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Originally Processed With FOIA(s): FOIA Number: S S FOIA MARKER This is not a textual record. This is used as an administrative marker by the George Bush Presidential Library Staff. Record Group/Collection: Donated Historical Materials Collection/Office of Origin: Frieden, Lex, Collection Series: Printed Materials Subseries: Reference Materials OA/ID Number: 52158 Folder ID Number: 52158-007 Folder Title: RIP [Rehabilitation Indicators Project] Project Narrative (2) [1979] [2] Stack: Row: Section: Shelf: Position: REHABILITATION INDICATORS: A METHOD FOR ENHANCING ACCOUNTABILITY AND THE PROVISION OF REHABILITATION SERVICES PHASE III: DISSEMINATION, DEMONSTRATION, REFINEMENT PART IV: PROJECT NARRATIVE Table of Contents Introduction to Part IV 1 A. Introductory Comments and Progress Report 1 B. Project Highlights 7 Project Framework 9 A. Introduction 9 B. Rehabilitation Indicators (RI's) 9 C. Basic RI Concepts 11 D. Defining Accountability 12 E. Accountability Problems and RI Response 13 F. A Comprehensive Model of Change in Rehabilitation 16 G. Rehabilitation Indicators and Units of Analysis 23 H. Defining Disability: Assumptions and Conceptualization 23 I. Defining "Needs": Assumptions and Conceptualization 25 J. The Structure and Functions of RI's 30 K. Models of Usage 34 1. Project Title 37 2. R & D Issues 38 A. Introduction 38 B. Program Planning, Management and Evaluation 38 C. Individualized Rehabilitation Planning 39 D. Defining "Functional Limitation," "Disability" and "Needs" 40 E. Improving the Information Base for Eligibility Determination 40 F. Other R & D Issues 42 3. Project Objectives 43 A. Introduction 43 B. Operational Objectives 44 4,5. Work Plan and Methodology 48 A. Introduction 48 B. Core and Modular Activities 48 C. Expected Progress; Project Staffing 49 D. Core and Modular Activity Areas 50 6. Utilization Plan 60 A. Expected R & D Product 60 B. Target Groups 61 C,D. Dissemination and Utilization 61 E,F. Implementation and Commitments 64 G. Indexed Abstract of Proposal 64 7. Cost-Benefit Measures 65 A. Target Groups and Size 65 B. Expected Benefits 66 8. Background 71 A. Project Staff / Committee Organization Chart 71 B. Staff Qualifications 72 C. Additional Affiliations 82 D. Table 5, Participants in Project Committees 83 E.1 Staff Commitments 90 E.2 Other and Priority Approaches 90 F. Potential Users 91 G. Implications for Legislation 91 9. Review of Appropriate Literature 92 A. Introduction 92 B. Review of Literature Useful for RI Content 92 Development C. Relevance of Literature Review to Project Framework 94 D. Duplication of Other's Work 94 E. Review of the Literature on Prediction of Rehabilita- 95 tion Outcome 10. Progress Report 103 A. Changes in Plan 103 B. Progress Report 103 INTRODUCTION TO PART IV, PROJECT NARRATIVE Several steps have been taken to improve this proposal's readability: (1) Introductory Comments and Progress Report (see pp. 1-7 ) place this proposal in the context of past, present and planned activities. (2) Project Highlights (see pp. 7-8 ) review some of the major ideas incorporated into the project framework, outlining this project's approach and selling points. (3) Project Framework (see PP. 9-36) fully discusses the conceptual underpinnings of rehabilitation indicators and their potential for use. A. Introductory Comments and Progress Report These introductory comments will attempt to place this proposal in the context of this project's past, present and planned activities. This proposal's purpose is to obtain funding for Phase III, the third of this project's activities. Phase I (October 1974-May 1977) consisted of the development of the project's framework (see pp. 9-36) and initial development of rehabilitation indicators (RI's) to the point of the inception of initial field testing. Development of RI's was based on the work of the Co-directors, Task Forces (constituted of providers, clients and administrators of rehabilitation services), and staff. Phase II (May 1977-October 1979), consisted of a two-and=one-half-year period which involved developmental and field test activities. Phase II involved the initial usage of rehabilitation indicators (RI's) with clients and service providers within rehabilitation settings. The purposes of such field. development included exploration of issues of reliability, validity, sensitivity, comprehen- siveness, and acceptability to clients and providers. Other purposes included intital attempts to explore dissemination and demonstration issues in preparation for Phase III. Phase III is an extension of previous work, but with a strong change in emphases. The objectives of Phase III (October 1979-October 1982) are focussed on one key factor: optimizing utilization of RI's in rehabilitation systems by the end of Phase III, i.e., establishing sufficient credibility, utility and momentum so that RI's will increasingly be adopted for use by rehabilitation settings and researchers, such adoption becoming less and less dependent upon RI Project efforts. Three areas of project activities are proposed during Phase III: establishing demonstrations to evaluate RI usage in a variety of settings; disseminating RI materials and concepts in a focussed, but expanded effort; and using feedback from utilizers to refine the indicators and RI packages. The strategy to be used in Phase III to address these objectives is one of separating project activities and staff into "core" and "modular" areas. "Core" defines the basic activities and essential staffing pattern needed to address most project objectives. "Modules" address important, but separable, objectives and would require additional resources; reviewers could choose to fund one or more modules along with the core; but the modules could be submitted to varying 1 2 funding sources if not approved and funded along with the "core" in the intital review. Where is the RI Project now and where does it need to go? A summary of progress is needed to place this proposal in context. First, in terms of developing rehabilitation indicators, three sets have been developed and have been tested in a variety of field settings. Status Indicators and guidelines are presented in Appendix I; three versions of Activity Pattern Indicators, their guidelines and initial training materials are presented in Appendices II-IV; and Skill Indicators are found in Appendix V. (Definitions of these types of RI's are presented in pp. 9-11.) The fourth type of RI, Environmental Indicators, has not yet been developed, due to insufficient resources during Phase II (see pp.6,11,14 of Appendix VI and p.12, Appendix VII). However, in Appendix VIII a modular proposal is presented requesting funds for this purpose (see also PP. 11,20 for a discussion of EI's). Also, the final report for Phase II (due in October 1979) will contain an expanded plan for EI development. Second, and of key importance, this project has clarified for itself how RI's relate conceptually to many areas of concern in rehabilitation: accountability, defining disability functionally, defining client needs, measuring benefits, devel- oping individualized plans, program management, etc. (see pp. 9-36 and Appendices IX-XD. The conceptual clarification of these potential uses of RI's provide a strong basis for the diversified application of RI's to multiple and key concerns; the conceptualization influenced the design of RI's and proposed models of usage. Third, the project has gained much practical experience in its field testing activities, Table I summarizes the separate programs in which RI's have been or are presently being tested. A full discussion of the results and implications of initial field testing will be presented in the Phase II final progress report. However, a summary of what has been learned thus far can be offered: 1. Numerous strategies for gaining entry to settings have been tried and evaluated. The keystone of what we learned is simple: "start small and work up." In other words, potential users of RI's in field settings were more receptive when small efforts were initially suggested (for small potential payoffs) rather than large efforts (with larger potential payoffs and greater risk). With successful small efforts, larger efforts could then be attempted. 2. The notion that settings can serve as "cells" in a research design where each cell uses RI's in the same way, with only one or two exogenous variables (e.g., disability group, type of agency) was quickly scrapped. Our Phase II proposal had proposed such a design; but in searching for settings to fit the cells, it was found that settings would vary greatly in how they would use RI's. Thus, the concept of "usage models" (see PP. 34-36) evolved from field testing experience. 3. In field testing it was found that the data collection paradigm would need to vary from setting to setting; this fact had significant impact on the development of RI materials. Thus, data gathering techniques needed to address special problems associated with psychiatric and developmentally disabled populations and with clients with less motiviation to cooperate and with lower level verbal skills. The three types of API's evolved from this set of experiences (see Appendices II-IV). N N Setting/Project/Contact Disability Design Completed/Planned Status Measures 1. Institute of Post- Longi- 300/300 Complete; - Early form Rehabilitation operative tudinal data analysis of API's Medicine cancer near completion /Cancer Research Project/ I. Friedenbergs /Psycho-social- Spinal cord Cross- 100/125 Continuing; - Status RI's vocational injury; para- sectional data being - API's Research Project/ plegics, analyzed - Skills W. Gordon quadriplegics - RI environmental Longi- 35/40 Continuing; questionnaire tudinal data being analyzed - Other non-RI psycho-social measures /Vocational Multiple Longi- 10/10 Complete; - API's Department tudinal data analysis Summer Work complete, but - Non-RI vocational Program/ not warranting interest measures P. Hutton report develop- ment (see p.17, App. VII) /Muscular M.D., mothers Cross- dystrophy of M.D. sectional 10/15 Continuing - API's children - Extensive interview Research Project/ F. Anderson Electronic Device Quadriplegics Cross- 15/20 Continuing; - API's Research/ sectional data analysis - Status RI's initiated - Non-RI interview J. Couniotakis /Traumatic Brain T.B.D. Longi- 12/32 Continuing - Status RI's Damage Research/ tudinal - API's Y. Ben Yishay /RI Project/ Non-disabled Reliability 20/40 Continuing; - API's some data M. Brown analysis 3 TABLE I: Field Test Activities N N Setting/Project/Contact Disability Design Completed/Planned Status Measures 2. United Cerebral MR Longi- 35/40 Completed; - Status RI's Palsy of New York/ adults tudinal data analysis - API's Post-Institutional presented in - Goals (API & status) Placement Project/ Appendix XIII S. Diamond, R. Schoenhorn 3. Altro Health and Outpatient Cross- 20/24 Completed; - Status RI's Rehabilitation/ psychiatric sectional data analyzed, - API's Evaluation Research/ not yet written - Perceived C. Benney into report well-being form longi- tudinal 25/25 Continuing - Status RI's - API's - Perceived well-being 4. SCI National Centers/Psycho- social vocational Research /Phoenix/ W. Dexter /Chicago/S. Harasymiw Spinal cord Longi- 40/150 Continuing - Status RI's /San Jose/ D. Mayclin injury tudinal - API's - Non-RI /Virginia/ D. Thompson psycho-social- vocational measures /Minneapolis/ G. Athelstan 5. University of Washington /Chronic Pain Research/ Chronic pain, longi- 475/575 Continuing; - Early and later W. Fordyce spouses tudinal data analysis versions of API's in process /Hemiplegia Hemiplegics Descriptive 73/73 Complete; - Early API form Research/ and spouses see App. XVI M. Clowers /Other Research/ Hetero- Descriptive 65/65 M. Clowers geneous Table 1, continued N N Setting/Project/Contact Disability Design Completed/Planned Status Measures /Spinal Cord SCI Longi- 32/85 Continuing - API's Injury Research/ tudinal W. Fordyce 6. Rehabilitation Institute of Chicago/ Hemiplegics Descriptive 12/20 Continuing - API's Hemiplegia Research/ S. Harasymiw 7. Woodrow Wilson Multiple Descriptive 9/20 Continuing - API's Rehabilitation - Skills Hospital, Virginia/ (planned) Special Research Project/ D. Thompson Table 1, continued 5 6 4. In exploring during field testing the issues of reliability, validity, relevance and comprehensiveness of the indicators, it was found that these issues could only begin to be explored under project auspices. Although RI's were tested in a variety of settings and with clients of many different types of disability, questions of relevance of RI's to rehabilitation and comprehensiveness were answered for only parts of the total target audience. For SCI patients in a medical rehabilitation facility, for example, it was found that RI's were relevant and sufficiently comprehensive to address most client problems; it is strongly believed that the RI tool will find similar success with other groups, but the empirical evidence to bolster such a belief will require a research program more extensive than any one project could handle. Such a large data base cannot be fully obtained under this project's auspices: pointing to a need for wider dissemination of RI's to other researchers, with feedback of RI client data to the RI Project. The Phase II objectives were phrased in terms of "determining" the reliab- ility and validity of RI's. It is obvious to us now, after much and varied field experience, that reliability and validity of assessment with RI's are as much a function of the usage situation and usage model as they are of the RI tool. Thus, our objective at this point is to explore these issues, to discover how to set up situations to maximize reliability and validity-- through appropriately designed usage models, adequate training, etc. Evidence is becoming available regarding test-retest reliability of RI's: a sample of 20 non-disabled persons completed activity pattern indicators twice, with a one-week interval separating the administrations; correlations for both frequencies and durations of 10 of the 12. activity categories across the two weeks were significant at the .05 level or better. This form of analysis of the tool's reliablity under controlled conditions will continue, as the tool is refined during Phase III. Nevertheless, whenever RI's are used in field settings reliability issues must be explored, with careful attention given to arranging the situation to bolster reliable information gathering. 5. Evidence regarding the sensitivity of RI's for detecting the type of changes expectable within rehabilitation programs is increasing. In all studies that have been implemented in the field, using RI's, where data have been analyzed-- even on a preliminary basis-- we have found strong evidence that RI's provide valid measures of changed functioning. For three examples of written discussion of RI use to describe functioning, see Appendices XIII-XV. Also, see pp. 103+ for an expanded discussion of data analyses. Fourth, a momentum of increasing involvement in field testing and disseminating the project concept has been building in the past two years. For example, field testing began in only three settings in early 1977 (using RI's with IRM cancer patients, with pain patients and spouses at the University of Washington, and with developmentally disabled persons at United Cerebral Palsy of New York); by April 1979 testing has occurred in nearly twenty settings with an N = 1200+. As a second example, contact with outside agencies in the early period of the project was centered on the persons who participated in project task forces (see pp. 83-89) by 1979 the project had developed its own newsletter to communicate with interested field settings (see Appendix XII) the present mailing list is approaching 1,000 and increasing (through letters of request) every day. 7 Where does the Project need to place its emphasis at this point? We believe the project should build on its experience and momentum to increase its dissemination (in focussed, selective ways) and should work to bolster the credibility of the RI product, by improving the instrument per se (through increased data analysis) and by exploring the utility of RI's to address multiple purposes that are of central concern in rehabilitation systems. The RI tool is being developed and tested in Phase II, but effort needs now to be placed on insuring that RI usage models are evaluated and results disseminated, with the outcomes of such evaluation fed back into tool refinement. This proposal incorporates a plan for developing, implement- ing and evaluating diverse usage models and utilizing such activity as a base for increasing the dissemination momentum and for obtaining additional evidence of RI utility. B. Project Highlights Rehabilitation indicators provide a generic language that can be used to describe the rehabilitation client's behavior and environment. These behavioral and environmental indicators can be used to describe as broad or narrow a range of goals and subgoals as needed by varying clients and varying rehabilitation settings. Through comparison of descriptions of actual behavior and goals, marked on the same indicator, the outcomes of rehabilitation can be described. Rehabilitation indicators are sets of phrases that can be used to describe what clients actually do or plan to do. The RI's as developed are neutral in that what is relevant/irrelevant, good/bad, needed/not needed, desirable/undesirable about the client's actual behavior, goals and outcomes is left to service providers and resource providers (including clients) to decide. Criteria setting and value judgements rest with the participants and do not reside in RI's, although RI's can be used by participants to state goals and criteria. Rehabilitation indicators focus on observable, modifiable aspects of functioning: behaviors and multi-dimensional environmental barriers/supports. However, the system of rehabilitation indicators is not "behaviorist." That is, no prescription or suggestion is made relevant to usage of behavior modification methods. The underlying notion within this project is that client behavior change is the major rationale for rehabilitation efforts and can be objectively described: therefore, behavior change is a good yardstick in determining rehabilitation setting effectiveness, and avoids hinging accountability to measures of non-observable constructs such as "improved motivation" or "enhanced satisfaction." Using rehabilitation indicators within rehabilitation settings will not require adoption of any one approach or methodology, such as a goal attainment model. The potential ways to use RI's are many: RI's are notably flexible. Thus, goal attainment models as well as other approaches to rehabilitation service provision can all benefit from use of rehabilitation indicators. RI's were not developed with only the present State-Federal VR system in mind, so flexibility of usage approaches has been built in. Rehabilitation indicators form a non-jargon language that promises to communicate well with many types and levels of participants in rehabilitation efforts. Varying types of clients (those with MR, psychiatric, physical and sensory impairments), varying types of service providers (counselors, nurses, psychologists, physicians, aides, OT's, etc.) and types of service settings 8 (hospitals, State-Federal VR agencies, workshops, mental health centers, etc.) can use the same language to discuss rehabilitation goals, needs, entry criteria, problems addressed by differing rehabilitation services, etc. This language should also help to enhance professionalization of rehabilitation counseling. Rehabilitation indicators can serve several potential purposes that are outlined above and are detailed elsewhere in this proposal: a. Improving accountability for rehabilitation efforts by expanding the behavioral dimensions defined in the information base (to include vocational, social, independent living and others) and by increasing the objectivity of the information base. b. Improving the provision of rehabilitation services through improvement of information that is used in forming individual rehabilitation plans and program planning. C. Providing a tool that can be used to operationally define "disability" and "needs." Rehabilitation indicators form a flexible tool, the use of which is defined by the nature of the setting, clients, purposes served, methods of information gathering and use, etc. A specific combination of such variables is referred to as a usage model. 9 PROJECT FRAMEWORK A. Introduction Although the RI project's primary product will consist of rehabilitation indicators, which are descriptors of aspects of client functioning, RI's have been designed to address multiple purposes (e.g., enhancing accountability) and, therefore, the product will also include guidelines or "models for usage" describing data gathering and use of RI information to address these purposes. As the Figure on the next page depicts, the RI product (both indicators per se and usage models) has been strongly influenced by purposes RI's are expected to address and expected constraints on usage within the operational level of rehabilitation settings. Furthermore, the nature of RI's and usage models have been strongly affected by, initial project assumptions and by conceptualizations of purposes (e.g., defining "accountability") and other issues. The purpose of this Project Framework is to discuss these conceptual and operational issues, relating them to the RI product. In the remainder of this Section, RI's are first outlined, then the product definition is expanded through clarification of conceptual and operational issues. B. Rehabilitation Indicators (RI's) The lexicon 1 of RI's (see Appendices I-V) consists of four sets of descriptors of observable, measurable and potentially modifiable client behaviors and environ- mental elements. Two of the sets are referred to as 'primary RI's" and can be used to describe 'quality of life' in terms of the client's elicited behavior; "instrumental RI's," the other two sets of descriptors, are used to describe the behavioral and environmental tools needed to attain the 'quality of life' the client seeks. Each of the two types of primary RI's focuses on different aspects of multi- dimensional client functioning actually implemented within the client's environ- ment. These are key indicators of quality of life functioning. The emphasis is on how a client spends his/her time. Primary RI's describe what the client chooses to do, not just what the client can do (which is covered by Skill Indicators, see below). 1. Status Indicators (see Appendix I) describe categorical statuses of import- ance to rehabilitation clients (e.g., competitive employment, living in a long-term care facility) in several functioning areas: vocational, educational, economic, transportation, and independent living. Specific, planned changes in these client statuses can serve as the primary goals of rehabilitation efforts. Status indicators account for major sources of variability in the client's elicited behavior. 2. A second source of variability in the client's elicited behavior resides in the activities the client selects: their nature (e.g., "going to the theater, " "bathing"), where they are located, their frequency, duration, etc. Activity Pattern Indicators describe these aspects of functioning and other patterns of behavior cutting across activities: client mobility, diversity of activities, isolation/non-isolation, etc. (see Appendices II-IV for three versions of API's). 1. "A dictionary and/or special language." as Operationally defined problems and needs: Usage Constraints: - Accountability Type of settings OPERATIONAL - Eligibility determination Information availability LEVEL - Individualized planning Information users - Defining disability functionally Resources Etc. Conceptual definitions of purposes: Models of Initial Rehabilitation: Assumptions: CONCEPTUAL - Accountability LEVEL - Defining disability - Client change - Observability - Etc. - Rehab processes - Multi- dimensionality - multi-setting RI's: Usage Models 1. Basic characteristics - Data collection paradigms PRODUCT - Observable, meaningful LEVEL elements of client - RI subsets functioning - Data reduction 2. Structured - Multi-dimensional content - Data usage - Four aspects of functioning: status, activity, skill, environment - Level of detail - Disability modules 3. Functions - Description - Change - Benefits - Gains 10 - Outcomes - Goals attained - Etc. FIGURE: 1 Conceptual and Operational Influences-on the RI Product 11 Instrumental RI's describe measurable and observable client-centered and environ- ment centered elements that may hinder or support (be instrumental to) the client's attainment of primary goals (status goals and activity pattern goals). 1. Skill Indicators (see Appendix V) are descriptors of the behavioral tools of the client, which may be instrumental to the client's attainment of primary goals (described with primary RI's). Skill indicators are behavioral means to the end, describing what the person "can do." 2. Environmental Indicators (see Appendix VI) will describe potential supports and/or hindrances to goal attainment that reside in the client's environment. The "environment" is defined as physical, social, and personal. Elements of the environment may be instrumental to goal attainment and, thus, may need to be modified through provision of rehabilitation services. Development of RI's began in 1974 in a rather simple context where one major purpose--the enhancement of accountability for rehabilitation services--and a few assumptions guided project activities. Since then, the assumptions and purposes have grown into a complex project framework. In describing RI's, at the product level, we have provided a brief outline of the lexicon (above); now we will describe the initial assumptions and the later project framework that fully define RI's and models of usage. C. Basic RI Concepts The original purpose for developing RI's was to improve accountability in rehabilitation settings. The project principals assumed that by expanding the range of outcome description in rehabilitation settings, using RI's, accountability would be enhanced. The assumption was that the range should be expanded to include social/leisure, ADL/self-care and vocational outcomes, including the environmental component of each. The project principals also assumed that to insure greater validity and objectivity of these multi-dimensional outcome descriptions, expansion should be tied to client behavior. Thus, if judgementalness was to be avoided, behavioral benchmarks would serve this purpose. These early assumptions were expanded to include additional basic concepts: the system of descriptors (RI's) should include only observable and inherently meaningful elements of functioning: elements such as "reading a newspaper" and "walking up and down stairs," avoiding non-observable elements such as ratings of "self-esteem or "job satisfaction." RI's also exclude components of functioning such as "flexes arm," which although important are labelled non-meaningful because components only acquire meaning when linked to purposes, such as "brushes teeth." All included elements also must be potentially modifiable within rehabilitation systems. It was also assumed that an enhanced accounting system would need to be designed so that it could be incorporated into service planning and service delivery processes; such a system would become integral to service delivery and not be viewed as "added on." From the outset of the project it was also decided that the accounting system must be designed for use by multiple rehabilitation sub-systems, not just state agencies- enhance information flow and accountability between agencies. Thus, RI's would need to be useful, at the operational level to address multiple purposes (e.g., accountability, individualized planning) and be flexible enough to be usable within many types of settings. To create a product that would be sufficiently flexible and credible to serve adequately at the operational level, conceptual clarification was crucial. Clarification was focussed on three inter-related areas: (1) the purposes RI's 12 could address (2) the aspects of client functioning to be incorporated into the RI descriptors, and (3) conceptual models of rehabilitation processes that would be useful as bases for establishing RI use in real world settings. These conceptual issues are depicted in Figure 1 and discussed in the remainder of this Project Framework. D. Defining Accountability The building blocks of accountability are defined as follows: 1. It is suggested that control of resources which allow rehabilitation programs to operate is the key to accountability. 2. "Resources" includes money for services and also a host of non- economic inputs that are necessary to rehabilitation programs, including client time, energy and hope. The set of actors in this half of the accountability relationship are referred to as "resource providers" (RP). The major resource providers are clients and funding sources. 3. The other half of the accountability relationship are labeled "service providers" (SP). These include rehabilitation counselors, rehabilitation planners, and administrators among others. All act as recipients of resources, deciding how they will be used in specific programs with specific clients. 4. Before control of resources passes to service providers, the resource providers tie expectations to the resources. For example, Congress defines the purposes for which State-Federal VR funds should be used. The resource provider's expectations may be categorized in terms of "who will receive services," "through what means, " and "to reach what ends," or "input," "process," and" outcome, respectively. 5. Service providers are accountable to resource providers for use of resources in line with these specific input, process and outcome expectations. An accountable service provider must meet two criteria: (a) Formulation of decisions that are compatible with the resource provider's specific expectations and (b) Generation of information or data that describes the results of input, process and outcome decisions, i.e., who actually received services, what means were used and what outcomes were attained? 6. Resource providers complete the accountability drama by using the service provider's information flow as a basis for resource allocation decisions, which are then tied to a new set of expectations. The model of accountability that emerges from these elements is depicted as follows: RP's EXPECTATIONS RP's RESOURCE ALLOCATION SP's DECISION MAKING SP's INFORMATION FLOW 13 Thus, accountability is the joint responsibility of service and resource providers. It resides in four basic processes which form a continuous cycle: a. Formulation of expectations, b. Decision making by service providers, C. Generating and communicating information about services, and d. Utilizing information to make resource decisions. E. Accountability Problems and RI Response The problems that resource and service providers encounter when they try to be accountable can be organized around the four basic accountability processes described above: 1. The Resource Provider's Expectations: Resource providers may couch their expectations in too narrow a set of categories (for example, only vocational outcomes). Or, expectations can be stated so vaguely that they give little guidance to the service provider's decision making. Inadequately formulated expectations can lead to narrow or vague concepts of service. One explanation for these problems in formulating expectations is that resource providers may not have a suitable language for describing clearly and unequivocally a broad range of expectations. The present language and syntax of rehabilitation is useful in describing only some of the potential expectations and outcomes of rehabilitation, for example, changes in vocational status. Other types of outcomes, such as independent living, may not be emphasized because they are not easily measured or specified with present languages and methods. 2. The Service Provider's Decision Making: The problems that arise when service providers are recipients of vague or narrow expectations were just discussed. The service provider's decision making also is hampered when multiple sets of conflicting expectations are being sent by multiple sets of resource providers. For example, a funding source may expect a counselor to work only toward vocational placement, whereas, the client expects assistance for independent living goals. 3. The Service Provider's Information Flow: Many types of problems reside in this aspect of accountability. First, accountability information must not only meet the resource provider's needs, it also should be useful to the service provider. For this to happen, information gathering and use must be integrated into service delivery. Too often accountability data are defined as something "added on" to service delivery; the service provider is asked to "fill out the form and file it," but the information requested is not useful to the service provider's day-to-day interaction with clients. A second problem with information flow exists when a service provider does not give an appropriate accounting to the client for decisions which use the client's money, time, energy, and so forth. From the accountability definition offered above, being accountable to the client is a responsibility of the service provider; it is not a favor--it is the client's right. A third problem resides in the language of rehabilitation decisions not communicating clearly. Terms such as "work adjustment" and "under- achiever" can be meaningless to many resource providers. For accountability 14 to occur, the language used must be precise and understandable by most persons. A fourth set of problems relevant to information flow stems from accountability data being of such low quality that they are not useful to to the resource provider's evaluation of a service program, nor do they meet the service provider's need for good data to help in program planning. Quality is reduced whenever the data are of questionable validity and reliability. Also data quality is lowered whenever data so simplify the description of outcomes that they underestimate the impact of rehabilitation programs. Data collection formats may be insensitive to important client changes that occur as a result of the provider's efforts. Also, simplistic accountability data may not show clearly that lack of "success" can be related to factors totally outside the client's and service provider's efforts (e.g., high unemployment rates). 4. The Resource Provider's Allocation of Resources: Part of the accountability "contract" is the stipulation that resource providers will use accountability data to judge whether expectations have been met; this evaluation process then becomes the basis for decisions concerning allocation of new resources. When allocation is not based on this type of evaluation, but instead on influence outside the accountability flow, the payoffs for a service provider's being accountable are not operating fully. If resource providers ask for accountability data and then do not use them, they are not living up to their responsibility in the accountability relationship. Such decision making may be less than optimal from two perspectives: (1) demoralization of service providers and (2) decisions being formulated which are not responsive to the service system's structure, functioning and outputs. A related problem exists when resource allocation is based upon simplistic data. Outcomes of rehabilitation programs are complex functions of the client's disability level and of the client's efforts within a specific environment and within the context of particular services brought to bear to meet specific goals. Accountability is in trouble when little effort is make to acknowledge this complexity in resource allocation. The so-called 'numbers game' results from resource and service providers simplify- ing a complex reality, focussing disproportionately on "number of successes." How can RI's address the accountability problems outlined? Clearly, some problems are beyond the reach of RI's, but they have potential to address the following: 1. The Resource Provider's Expectations: RI's provide a multi-dimensional language of observable behavior and environmental elements which will be useful in formulating multi-dimensional expectations about who is to receive services and the range of valid outcomes, Expectations can be formulated precisely, drawing upon any or all of the RI content areas. 2. The Service Provider's Decision Making: Through use of RI's, decision making can be enhanced to the extent that it is based upon the RP's expectations and upon client functioning and outcome information. Both of these sets of information can become more precise, focused and reliable if based on RI's. Decision making may be enhanced, particularly, in formulating a strategy for challenging environmental barriers to client goal attainment, in that RI's will constitute a fully developed language for describing environmental events. More credit can be given for changing the environment 15 if a language is available for documenting changes and their relationship to client outcomes. More credit needs to be paid to the service provider who links a client to needed transportation or gets an employer to modify the task structure of a job. 3. The Service Provider's Information Flow: First, because RI's constitute a comprehensible language, RI's should communicate well across types of rehabilitation settings, across and within professional groups, and among differing levels of participant sophistication. Second, RI's are based on observability, which is expected to create more reliable and valid data, that are intrinsically more meaningful and less likely to be manipulated. It is recognized that no system of data collection can avoid totally the 'fudging' of data, but there is less reason to manipulate the data when the accountability system gives proper credit for a broad range of efforts and a broad range of outcomes. A crucial third point about RI's is that although they can be used as an external evaluation system, RI's can be used in ways where they are not an add-on, but are integrated into service delivery and follow up. Within this latter usage model, the RI lexicon provides multi-dimensional content which indicates possible goals, problems, and strengths; this can be used by the client and counselor in developing an individualized plan. The lexicon reminds the client and provider of the range of behavioral and environmental variables that need to be taken into account prior to and after goal selection. Information flow can be improved, also, through insuring the flow of information to the client. Moves to insure this aspect of accountability have been increasing from two major sources: clients themselves are demanding greater accountability, and funding sources are writing into law and regulations, measures to insure that information does indeed flow to the client. When information about services is shared with the client in a form that increases the client's understanding, accountability is increased. The client needs sufficient information to make informed decisions about options he/she can take within the rehabilitation planning process. Information can also be improved by increasing the congruence between accounting information and the resource provider's expectations, i.e., specifically and objectively describing client access, rationalizing services provided, as well as describing rehabilitation outcomes. In describing client access, defining the "severity of disability" and "type of disability" of client's served needs to be part of the information flów. By using behaviorally based information such as RI's val idity of information relevant to access increases and criteria for and priority of access can be set in behavioral terms. In rationalizing services provided, accountability will be improved through research to relate input and process variables to outcome. RI's will improve the description of clients at entry and client outcomes, to enhance this aspect of accountability. Accountability will be enhanced by RI's expanding the dimensionality of outcomes described, to include social, educational, vocational and other aspects of functioning and by expanding the range of functioning 16 levels that are defined as "successful outcomes." For example, reliance on "26 closures" to define "success" within the State-Federal VR system does injustice to rehabilitation efforts which improve client vocational functioning to a point of less than 60 days employment, to efforts which far surpass this minimum level of success and, also to changes in non- vocational areas. By adding dimensions to outcome descriptions and by allowing a range of functioning to be described on each relevant dimension, a substitute is being offered for a single point of "success." This will allow more appropriate credit for rehabilitation efforts and will tend to create less distortion of rehabilitation efforts, resulting from attempts to hit very narrow targets of "success." 4. The Resource Provider's Allocation of Resources: RI's are not meant to provide the sole input to influence resource allocation. However, RI's will allow information of greater reliability and specificity to flow into this process. Client benefits (or outcome) will be more comprehensively defined and inter-related to input and process variables. Finally, a basis is being laid with RI's to define "disability" in environmental/behavior (functional) terms; RI's also can be used to define unmet needs of disabled persons. These RI capabilities also will assist the resource provider's decisions regarding resource allocation. This accountability conceptualization has two impor tant consequences. First, the ideas have been incorporated into RI usage models at the product level. Second, the discussion of accountability highlights the need for a focussed information system--an information system that reflects better descriptors of client functioning and changes in functioning. In the next sub-section, a model of client change within a rehabilitation context is offered. The model has been a major influence in selecting aspects of functioning to develop as RI's. F. A Comprehensive Model of Change in Rehabilitation Typical models of process and outcome analysis that are implicit in studies of rehabilitation outcome (see PP. 95-97) relate various client factors to the gross agency status outcomes through correlational, regression or factor analytic techniques," (Walls and Tseng, 1976, P. 213). The problem with these approaches to examining outcomes is that the outcomes and inputs are grossly specified, other important variables are ignored, the relationship is analyzed out of its context, and/or the relationships between and among the predictor, criterion and other variables are simplified in the extreme. Below, Figures 2 and 3 schematicize these implicit designs. Figure 4 schematicizes the type of change model that is incorporated into this project framework; it depicts a network of predictor and criterion variables. Figures 2 and 3 oversimplify the complex nature of both sets of variables. Relationships within each set of data are not examined. These two approaches assume simple, direct relationships where complex multivariate interactions exist. In contrast, Figure 4 depicts the network of interactions available for analysis when examining outcomes of rehabilitation. "Rehabilitation" is 3 defined within this project as an active process that is designed to reduce the client's disability level and improve functioning. 2. Walls, R. and Tseng, M. Measurement of client outcomes in rehab. In Bolton (ed.) Handbook of measurement and evaluation in rehab., 1976 3. Reduction of disability is the purpose of most rehabilitation; however, for clients with chronic deteriorating conditons, the purpose may be viewed as stabilizing rather than reducing the disability level. 17 PREDICTOR1 PREDICTOR1 CRITERION 1 CRITERION PREDICTOR 2 PREDICTOR2 CRITERION2 PREDICTORN PREDICTORN CRITERION N Figure 2 Figure 3 PREDICTOR 1 CRITERION CRITERION A1 B1 PREDICTOR CRITERION CRITERION 2 A2 B2 PREDICTOR CRITERIONA CRITERION N N BN Figure 4 18 The model adopted in this project framework consists of two sets of variables: those associated with rehabilitation systems and those associated with rehabil- itation clients (see Figure 5, p. 19 ). 1. System Variables: The first element of the rehabilitation system is constituted of the general goals, expectations and eligibility requirements that rehabilitation systems adopt as the guiding premises of their efforts. Goals and access criteria may be adopted from funding sources, from consumer advocates, from laws or statutory regulations and from longstanding traditions and conventions of professionals and other groups. Whoever are the providers of resources (funds, time, energy) can formulate goals and criteria which guide overall resource allocation, access and individualized client planning. The client is a resource provider and, in this capacity, also contributes to the over- all goals the rehabilitation system must address. Second, "resources" include money to train and hire personnel and to purchase services and equipment, and also includes the time and energy of the client. The amount of resources available are limited and, thus, will help to determine the system's goals, eligibility requirements and the services that are brought to bear for any client. Third, "planning" is the system's process of determining a client's addressable needs and the determination and implementation of an appropriate course of action to meet those needs. Planning can vary in terms of the amount, type and source of information that is obtained in formulating the plan; in the degree to which services and goals are planned specifically; in the degree to which needs, goals and services are integrated logically; in the degree to which the plan is developed by the client and counselor; and in the degree to which it is specified in writing. Planning is based upon information relevant to client variables, the rehabilitation system's goals, and available resources and services. Formulation of the plan will help determine the services provided to the client and may in itself modify client variables (e.g., the client's goals may be modified by the planning process). Fourth, "services" include all actions on the part of rehabilitation system personnel and on the part of the client to change client variables. Examples of services include medical treatments, psychotherapy, physical therapy, educational programs, vocational counseling, etc. The type, level and timing of services is a function of resources available and the individual client plan; these service variables should impact upon all elements within client variables. 2. Client Variables: Historically it has been the case that for purposes of studying and modifying behavior within rehabilitation settings, the continuous flow of the client's elicited behavior is subdivided into units of useful sizes and types. These units are isolated from the natural flow of the client's behavior and from the external context in which the behavior naturally occurs. Thus, if we are interested in behavior change, "behavior" can be looked upon both as a continuous process occuring within the client's natural context and as discrete units isolated for the purpose of modification, study or measurement of change. 4. Except those variables that only vary across clients, not within clients, e.g., I.Q., demographics. 19 Rehabilitation Goals and Expectations Resources Services Planning Intra-Client Client's Environment: Social, Health Physical OLIENT Intra-Psychic: Psych. Constructs Knowledge Skills Behavior: Goals Statuses and Activities FIGURE 5 Model of Rehabilitation Processes and Client Variables 20 The treatment and modification of behavior (in isolated units) is associated with a set of questions: What can the person do? What are the skills of the person? These questions focus on behavior defined as "means to ends," "tools" or "capabilities." These questions, if asked over time, are important sources of information about behavioral change and, under certain conditions, about the impact of rehabilitation on client behavior. Another set of questions is relevant to the continuous behavior within a natural context: What does the person do? What behavioral pattern is chosen and elicited by the client? These questions focus on behavior, not as a tool, but as an end in itself. These questions also need to be asked (over time) to look at change in life functioning as rehabilitation progresses. The set of client variables included in the change model has incorporated a point of view that addresses these two forms of behavior. Three major sets of client variables are defined within this model. The relationships between these sets of variables are based upon Kurt Lewin's (1936) 5 formulation that behavior is a function of the person and the environment: B = f (P,E). Within the change model, it is suggested that statuses and activities are behaviors selected by the client (B, behavior) and are a function of the client's physical and social environment (E) interacting with client demographics and intra-client variables, including skills, health, knowledge, goals and psychological constructs (P, person). a. Client's Environment: The client's environment is constituted of thousands of elements that, to varying degrees, support and hinder the client's progress in reaching multidimensional goals of rehabilitation. The person's environment can be thought of in terms of a matrix of social and physical factors crossed by vocational/social interaction/ recreational/economic/self-care/political areas of functioning. The client's environment may be directly modified by rehabilitation service interventions or by the client's actions. Changes in the environment can affect changes in all other areas of client variables (e.g., statuses, health, skills, etc.). b. Intra-Client Variables: The first element, "client demographics," includes aspects of the client, such as gender, race, psychosocial history, age, etc. This set of variables is not subject to change with- in a rehabilitation context. Second, "health" includes level and type of impairment, where impairment is defined as a structural modification in a person that leads to functional modification (Nagi, 1975). "Health" also includes physical well-being and illness in general. Third, intra-psychic variables include cognitive and psychological variables that can be changed by and mediate rehabilitation progress: 5. Lewin, K. Principles of topological psychology. New York: McGraw-Hill, 1936 6. Nagi, S. In EB. Whitten (ed.), Definitions of pathology, impairment, functional limitations, and disability. National Rehabilitation Association, Mary E. Switzer Memorial Series No. 1, 1975, pp. 1-8. 21 1) "Psychological constructs" are constituted of measures of psychological and emotional functioning, such as level of self-esteem. The person's perceived well-being (Andrews and Withey, 1976) 7 or subjective 'quality of life' is an import- ant construct which may mediate or be impacted by rehabilitation. 2) "Knowledge" refers to the client's pool of information that he/she can draw upon and use in implementing activities in his/ her life. 3) "Skills" refer to the client's pool of learned behaviors that the client can draw upon and use (within a supportive environment) in order to reach the goals of rehabilitation. Skills can be categorized in terms of self-care, mobility, cognition, communication, social ADL/interpersonal, homemaking, child care, vocation, recreation, education, etc. Examples of skills include "irons clothing," "shampoos hair," 'turns on TV/radio." "Skills" are defined as the smallest units of behavior that have specific, immediate uses. A "skill" is a meaningful unit of behavior in and of itself and is likened to a tool. The tool has at least one specific, immediate use (e.g., hammering nails) and usually has several secondary uses (retracting nails, crushing ice cubes, etc.). A tool is a human-defined construct, as is a skill. Thus, the handle of a hammer, the head and sub- parts of the head may each be "useful" but when put together they form a tool which has more uses than the sum of the parts. Similarly, "walking" is a skill composed of many sub-parts, but only when the microbehaviors are combined in a set pattern does the person become "mobile." Skills may be highly complex or simple, varying in number of sub-parts. They vary also in degree of contribution of the three components of behavior: cognitive, motoric and social. Also, a skill can be central to a person's functioning, having wide impact or can be peripheral, having lesser impact on elicited behavior (e.g., "walking" and "skiing," respectively). The environment affects skills in two ways: the environment defines and teaches skills and is necessary to support skills once attained. For skills to be attained the environment needs to become focussed and experienced by the person in a fashion syntonic to skill acquisition and retention. The person's experience of the environment, then, mediates skill attainment. Secondly, as was mentioned above, once a skill is attained, it must have specific environmental" support for it to be incorporated into elicited behavior. 4) "Client goals" are formal or informal statements that define the types of statuses and activities for which the client will extend efforts to achieve change. These goals may be realistic or not, are intrapsychic concepts, and may or may not become incorporated into the formal rehabilitation plan. These expectations or goals are based on the person's values and are modified by awareness of skill levels, environmental 7. Andrews, F.M. and Withey, S.B. Social indicators of well-being. N.Y. Plenum, 1976. 22 supportiveness, and the person's actual functioning level. Thus, personal expectations act as a "plan" for behaviors elicited; the "plan" needs support from the person's pool of skills and from the person's environment. C. Statuses and Activities: Statuses and activities are interactions of person variables and the client's environment. Statuses are categorical channels of behavior that to a large extent account for much of the variability in elicited behavior that follows entry into the chanelling status. In our culture, "statuses" include employment, transportation, living arrangements, education, etc. Activities are purposive sets of behavior attached to a single setting within a social context, e.g., going to church, riding a bicycle, reading a book at home, dining out, etc. Statuses and activities are often the focus of treatment and goals in many rehabilitation settings, and are the locus of important changes in behavior that are associated with rehabilitation, i.e. where measurement of outcome should be enhanced. Once statuses and activity patterns have been described, the variance in elicited behavior that remains will consist largely of idiosyncratic sub-activities (e.g., "telling a joke at a business meeting," "waving to a friend"), and 'personality' traits (e.g., "laughing nervously," "talking forcefully") that can be important to the person, but also may be less relevant to rehabilitation and difficult to describe as they occur in elicited behavior. Statuses and activities constitute the elicited behavioral elements of client variables, and are a function of environmental and intra-client input. Services impact upon the intra-client variables and/or the client's environment which interact to produce changed statuses and activities in line with client and/or system goals. Changes within the elicited behavioral elements will serve as feedback to the modification of the rehabilitation system's goals and expectations. To influence outcomes, the client can affect the rehabilitation system through the planning process and also can act directly upon the environment to produce change that will support the acquisition of new statuses and changed activity patterns. As a final comment regarding this model, the status and activity elements can define important aspects of the client's objective 'quality of life,' especially in the context of the client's specific rehabilitation goals. The other client variables (environment and intra-client) can be looked upon as means to obtaining an enhanced quality of life. Thus, the behavior elements (status and activities) constitute the major goals and primary outcomes in rehabilitation; changes in intra-client (skills, psychological constructs, etc.) and environmental (social and physical) elements constitute instrumental and mediating outcomes of rehabilitation. 23 G. Rehabilitation Indicators and Units of Analysis The units of observable behavior and environment that become foci of treatment and are used for measurement of change are important to discuss. In subdividing the environment and behavioral stream, there is no one best unit; units selected are "good" only in relation to the purposes for which selection is made. Our approach for selection of units has been to note that some behavior is "means," some is "ends;" units will differ for the two types of behavior. Also, means and end behavior are both analyzed and dissected for the purpose of treatment, modification, and measurement of change. Thus, the units into which means end behavior are subdivided must be useful for treatment and modification purposes and for purposes of measurement. Within this project the unit selected for "means behavior" is that of the "skill." As was discussed above, skills vary in complexity and size, but a "skill" by definition is useful in and of itself. Also, "skills" are immediately understandable (e.g., we all know what "walking up stairs" means, but not necessarily what "30 degree range of arm motion" means, which is not a "skill"). Skill indicators were developed to describe this aspect of behavior. When the stream of the person's elicited behavior is subdivided into units, many possible choices can be made as to units that are useful and appropriate. The Project's approach has been to try to select units that are understandable and will account for major sources of variance within societal contexts. Statuses are categorical channels of behavior that to a large extent account for much of the variability in elicited behavior that follows entry into the channelling status. Activities are purposive sets of behavior attached to a single setting within a social context, e.g., going to church, riding a bicycle, reading a book at home, dining out, etc., that also account for large amounts of behavioral variance. The units of "ends" behavior (statuses and activities). are easily understand- able, are often the focus of treatment and goals in many rehabilitation settings, and are the locus of important changes in behavior that, are associated with rehabilitation, i.e., where measurement of outcome should be placed. Status indicators and activity pattern indicators were developed to describe this aspect of behavior. The environment is part of the "means to the end" and as such is seen as instrumental to change in elicited behavior; it can be subdivided into units that serve to support or hinder goal attainment. Environmental Indicators have not yet been developed to the point where "units" of the environment can be discussed in detail. Thus, the four types of RI's that have been developed reflect the client change model and these considerations about useful units of analysis, as well as the basic starting assumptions: observable, modifiable elements of function- ing. H. Defining Disability: Assumptions and Conceputalization This project's definition of "disability" follows directly from the definition of the structure of behavior, i.e., B = f(P,E) presented in the previous subsection. One additional component is needed to define disability 24 impairment. "Impairment" is a structural modification in a person that leads to functional modifications. Thus, for example, following Nagi (1975), the damaged brain tissue following a stroke is a person's "impairment"; functional problems that are based on this structural damage are referred to as "functional limitations" and "disability" (discussed below). The relationship of impairment and disability is that the latter is a consequent of the former. Impairment can be based on physical or mental pathology. An impairment typically impacts on a person through modifying the person's intrapsychic variables, including knowledge, goals and skills. The physical impairment can influence skills through (1) modification of the environment's impact on experience, (2) modification of the impact of experience on skills and/or (3) through direct impact on. the skill pool. A physical impairment of structural damage following stroke, for example, may impact on the person by modifying how the environment is received to produce the person's experience of it. A stroke may leave a visual impairment (a field cut) which may serve to filter out part of the visual environment; it may act in terms of the person's translation of experience into skills (e.g., a skill that a person learns while not compensating for a visual field cut may be quite different than the same skill learned when the person processes the whole field); and it may directly impact on the skill pool (the stroke may leave the person unable to walk or talk). With regard to the impact of impairment on skills, two types of impact need to be differentiated: 1. Because of impairment, skills that people need in reaching goals will not be developed (or in the case of traumatic impairment will be removed from the person's skill pool). Impairment can reduce needed skills. 2. Because of impairment, skills that are maladaptive and hinder goal attainment will become part of the person's skill pool (and part of elicited behavior). Impairment can increase unneeded, negative 'skills.' When reduction of disability through rehabilitation efforts is discussed, both types of skill problems need to be kept in mind. The functional consequents of impairment, following Nagi (1975), are of two types: functional limitations and disability. We define "functional limitations" at two levels of specificity: skills and behavioral components of skills (previously discussed on pp. 18-22). "Disability," on the other hand, is defined within this project's conceptualization as a function of elicited behavior and expectations or goals regarding this behavior. Thus, "disability" is located in what the person does not do, but wants or is expected to do. As Moriarty (1975) points out, "disability" is relational and cannot be directly seen (see Figure 6 ). Expectations about functioning Elicited behavior Disability or actual functioning FIGURE 6 DISABILITY, AS THE RELATIONSHIP BETWEEN EXPECTED AND ACTUAL FUNCTIONING LEVELS 8. "A physiological, anatomical or mental loss or abnormality, or both" (p.1). 9. Moriarity, J., In Whitten (ed.), op cit, p.15. 25 The expectations about functioning may be the focal person's or may be society's expectations. "Disability" will, of course, differ when the expectations differ (over time or in terms of viewpoint) and when the level of elicited behavior changes over time. In terms of the definitions of structure of behavior, "disability" can be changed with modification of any or all of the client variables in the change model: impairment, knowledge, skills, environment, goals, etc. In defining disability in this way, we have attempted to differentiate the two aspects of functioning previously discussed: elicited behavior (behavior-as-ends) and skills (behavior-as-means). When physical and mental structures are modified through impairment, the ensuing functional modifications are complex and the distinction we have made will help maximize the impact of rehabilitation services. The distinction between behavioral tools (skills) and elicited behavior is the crucial aspect of this discussion, and is expanded below. I. Defining "Needs": Assumptions and Conceptualization In conceptualizing "needs" this project has defined "needs" differently than have others. Typically psychologists have viewed "needs" as universally valued categories of environmental elements which motivate people to work (expend energy). Thus, people are said to have "physiological needs" in that, when deprived of food and water, they will work to obtain these relevant items. "Needs," in typical models, refer to categories of elements in the environment that will reduce arousal levels associated with an inherently valued state. For example, the physiological need for food becomes more salient when a person has not eaten for several hours; the saliency of this need decreases when any food article is eaten. Also, food is a "need" because continued existence of the person is valued, i.e., need is based on value. This type of general model is not very useful in defining the needs of disabled people, especially if one is defining needs in order to develop a program of services that is responsive to "needs." The authors of this proposal take the view that what a person or society values, provides the context for defining that person's needs. The values that give rise to needs may be universal or idiosyncratic. This context of values that give rise to needs may change across situations and time, with the resultant modification of the person's need. In order to optimize the attainment of his/her values, each person operationalizes values into a means/end chain, each link of which is the focus of a different type of "needs." Below, each of the four linkages of the means/ end chain is discussed. The first part of the discussion is focused on defining means and ends at each linkage. This is followed on pp.27-29by a discussion of the "needs" defined at each linkage. (See Figure 7.) The first link in the means-end chain consists of an "end"--implicit and explicit values--and a set of operational means. In operationalizing their values, people tend not to act randomly, but instead tend to establish longstanding structures and patterns of activity that will provide a continuing high probability of achieving their values. To optimize value attainment, people enter statuses (e.g., marriage, employment as a lawyer) and adopt longstanding patterns of activities within statuses (e.g., performing lawyer- like activities) or independent of statuses (e.g., seeing certain friends a 26 MEANS ENDS LINK Status, Activity Patterns Values First Skills and Environment Statuses, Activity Second Patterns Services and Actions Skills and Third Environment Resources Services and Actions Fourth FIGURE 7: MEANS-ENDS CHAIN WHICH DEFINES NEEDS OF CLIENTS 27 certain number of times in any given period). Thus, the first link in the means- end chain refers to status and activity patterns being the major means chosen to optimize personal values. FIRST LINK: STATUS/ACTIVITY PATTERNS VALUES The second link refers to the specific constellation of skills and environmental supports that the person must acquire if he/she is to achieve the statuses and activity patterns described above. In this link, status and activity patterns become an "end" and instrumental elements from within the person (e.g., skills) and from without (environment) are "means" to reach this "end". For example, to address his/her social and sexual values, a person may wish to establish a status and activity pattern of marriage. To achieve and maintain the status and activity pattern, the person must seek an environment that provides social contact with appropriate persons, must demonstrate certain instrumental social skills, and must use skills to maintain the marriage, once attainment has occurred. SECOND LINK: SKILLS/ENVIRONMENT STATUS/ACTIVITY PATTERNS The third link consists of actions and services that are brought to bear in a person's attaining skills and in acting on the environment to enhance its supportiveness. Such actions and services can include the person's own and those implemented on behalf of the person, e.g., the person taking a course in English composition, the person's family buying him/her a wheelchiar. THIRD LINK: ACTIONS/SERVICES SKILLS/ENVIRONMENTAL SUPPORTS The fourth link refers to resources which are necessary if services are to be provided or actions are to be implemented. "Resources" with regard to services may include money, training of service providers, information about service availability and technological/structural adequacy of the service setting. Resources with regard to individual action may include the client's money, knowledge of options and ability to sustain an action. FOURTH LINK: RESOURCES SERVICES/ACTIONS This model depicts four levels at which "needs" can arise. Each of these types of needs are discussed below. 1. Primary (Status and Activity Pattern) Needs At the first link, "values" are the "end and "statuses/activity patterns" provide the "means." If these means are not sufficient to attain expected ends, "primary needs" are said to exist. Values are operationalized into expected levels of statuses and activity patterns (or goals); the actual level the person is able to attain is a function of these expectations and the constraints provided 28 by the person and environmental variables; the difference between expected and actual levels defines the person's primary (status and activity pattern) needs (see Figure 8 ) and is identical to the person's "disability," when preceded by impairment. Values Status & Activity Pattern: Expected Level Actual Need Level Area Person & Environmental Variables Figure 8 To be more precise this difference defines the person's needs to attain new statuses and activity patterns (the person's primary attainment needs). Primary maintenance needs refer to those areas where attainment has occurred, but the person is having difficulty maintaining this level, e.g., the person is having difficulty holding a job. EXPECTED LEVEL OF STATUSES AND ACTIVITY PATTERNS Attained & Maintained Attained, Not Being Not Maintained Behaviors Maintained Not Attained / TYPE OF NEEDS Maintenance Attainment Needs Needs Figure 9 2. Instrumental (Skill and Environmental Elements) Needs. Once primary needs have been defined, the means necessary to addressing these needs must be defined. Instrumental needs consist of those skills and environmental supports that the person must acquire (and does not yet have) in order to address primary needs. It should be pointed out that any single instrumental skill or environmental support can address more than one primary need. For example, eating skills can contribute to addressing independent living, 29 social, and vocational goals. SKILL1 PRIMARY NEED1 SKILL PRIMARY NEED N N Figure 10 3. Service and Action Options and Resources Once the client's instrumental needs are defined, many service options and action options are open to address these needs. One could define "needs" here as was done at the first and second linkages by determining what services and actions are necessary in 10 addressing instrumental needs but are not available. However, equifinality exists at this linkage to a degree not previously found in the needs model. Thus, if a person does not "enunciate words clearly," many service/ action options may prove to be useful: speech therapy, increased family supportiveness, psychotherapy, a hearing aid, etc. However, until the relationship between each option and the instrumental need is known, the client's service (and resource) needs will not be known, only service (and resource allocation) options. The relationships between the different types of means/end needs are clear: at the first linkage, values are selected and operationalizations of values are also selected by the person (and stated as expectations); this forms the context which defines needs at each linkage. "Needs" are the means that are necessary but not available to the person, given the context of the person's operationalized values, which define the end. Needs at each level are a function of the person's operationalized values. As values or operational statements change within the person, all needs derived therefrom will change. To this point, definition of needs has been discussed solely from the individual person's point of view using the individual's adopted values as the base. But a person's "needs" can also be determined using values selected by society (and operationalized statements derived therefrom); these might be labelled the person's societally validated needs. Societal expectations relevant to functioning can be stated in status and activity pattern terms, but it is more likely that the expectations will be formulated in general rather than specific terms. "Needs" can also be defined during the client-provider service interaction, where expectations are operationalized into rehabilitation goals. Here client expectations can be reviewed in the individualized planning context and trans- lated through consensual validation into operationalized statements: "needs" and "goals" are derived from consensus of client and provider. Within this context, societal and client expectations are both used to develop goals toward 10. A systems theory term denoting that many paths to an end are possible and that there is no one best way to an end. 30 which rehabilitation services and planning will be directed. Thus, "needs" can be defined from many viewpoints, including those based on client expectations, those based on society's or those based on both. Each basis of needs definition will be biased; these biases are discussed in the context of the purposes "needs" definitions must serve. Client-based needs (those based on client-selected values and expectations about functioning) will address a wide range of statuses and activity patterns the client values and will be quite detailed (e.g., expecting to be a "salesman" rather than only expecting to be "employed"). These "needs" will closely parallel "wants." In a world of unlimited resources and completely effective services, this "needs" list would be the only valid one. However, this "needs" list is biased, in as much as it does not take into account service limitations (in terms of effectiveness) and resource limitations (in terms of amount to be allocated). Determining client-based needs would be a useful starting point in individualized rehabilitation planning and may be useful as a data base to provide evidence of important needs not addressed when narrower societal values are used. Societal-based needs (those based on expectations that a societal agent, such as a funding agency selects) are limited in that they will tend to be global rather than specific and will produce a general list of primary needs, not very useful in generating individualized instrumental needs. Societal- based needs do not take into account societal resources. However, the bias exists in that the range of values will be more limited than the client's. To be useful societal expectations (that will be supported by resource allocation) need to be stated more specifically and for a broader range of values. These expectations could be used in surveys of the population where needs of the disabled are to be defined for program planning purposes. Needs, defined within a rehabilitation service context (those based on client values and societal values, consensus being mediated in the service planning process) are derived from the comparison of goals and the client's entry functioning. These "needs" are biased by assumptions concerning "being realistic," "staying within resource limits," "services that are available," "client motivation," etc. From this discussion, it is clear that "needs" are not simple to determine. "Needs" are of several types and can be developed from several points of view, depending on the set of expectations being tapped. The major point here is that "needs" can be defined quite explicitly, given that the purpose of defining needs is clear. J. The Structure and Functions of RI's The preceding conceptual framework has been a review of the project's definitions of (1) purposes (e.g., defining disability) it can address through appropriate design of RI's and RI usage models and (2) models of client change and rehabilitation system processes that impact on clients. Given this framework the RI product can be described more fully than in pp. 9-11. Up to this point, RI's at the product level have been described as descriptors of elements of the client's life that can change during rehabilitation, such descriptors are infinitely numerous and needed to be sampled and organized before being useful in addressing such purposes as "enhancing accountability." The RI 31 list of sampled descriptors was developed by first applying two criteria: "observability" and "meaningfulness." Non-observable elements (e.g., "self- esteem," "job satisfaction") were discarded, except those that could be directly operationalized in client behavior (e.g., "remembers own name"). Elements without direct, functional meaning were also discarded, e.g., "flexes arm." This sampling approach does not imply that non-observable and/or non-meaningful elements are unimportant aspects of the client; what is being implied is that documentation of change must be based on observability and meaningfulness, to enhance validity and communication. A key to RI utility lies in the several structural approaches to organizing descriptors. RI's have been structurally organized for flexibility of use on the basis of four organizing strategies: First, RI's are conceptually organized in terms of the four aspects of functioning (status, activity pattern, skills environment) incorporated into the client change model. Second, within each of the four types of RI's, the descriptors are sorted into content categories (e.g., vocational, self-care, etc.) Third, the relevance of each indicator to a variety of client disability categories is being estimated and validated in empirical field testing. The result will be disability-relevant modules of RI's. (The four aspects of functioning and the multi-dimensional content may also be seen as bases for modularizing the total set of descriptors, to increase flexibility of use.) Within each module of RI's only a sample of possible indicators have been included. The lexicon cannot possibly contain all of the elements that can be used in describing all clients' rehabilitation goals, subgoals, needs or strengths. To describe specific client goals or needs that have not been included in the lexicon, guidelines for development of "idiosyncratic indicators" will be included. Such guidelines would define the criteria that were used in development of each type of indicator, so that users could extrapolate from the lexicon to describe the client's relevant, but idiosyncratic behavioral or environmental elements. These idiosyncratic RI's would be used in a manner similar to that described for standard indicators included in the lexicon. Fourth, The RI descriptors have been organized into branched levels of detail. Indicators must be capable of describing behavior at a level of detail appropriate to the demands of accountability and to the focus of rehabilitation efforts and must also be structured so that the elements that are not problems, needs, or strengths may be ignored or easily skipped over and those that are relevant may be identified in minimum time. The Skill Indicators, for example, were organized into a three-level branched structure, by specificity of the skills involved. The first and broadest level of detail is referred to as a nominal level; it is used solely to organize and structure skill indicators at more specific levels of detail. The second level of detail of description consists of broadly defined behaviors and/or categories of skills referred to as "general skills." A third level of detail, "specific skills," are components of general skills (e.g., "dries entire body" is a component of "showers/bathes") or examples of general skills ("opens envelopes" is an example of "manipulates small objects"). These two types of specific skills are seen as structurally different, but functionally equivalent. 32 An example of the tri-level branched structure is presented below. Level of GENERAL SPECIFIC Detail NOMINAL SKILL SKILL Self-Care Eats/Drinks Drinks from cup Butters bread Orders a simple meal Maintains bowel continence Manipulates small objects Turns on light switch Opens & closes drawers Opens envelopes Uses key to open door When the concept of "gating" is added to this branched structure, the client and service provider can quickly 'reach' the behavioral areas relevant to describing problems and needs. "Gating" refers to the process of scanning the broadest level of detail to identify problem areas; a problem at the nominal level acts then as a gate to the general skill level. For example, if "self-care" is not problematic, none of the general or specific indicators listed above would be reviewed. The existence of problems in "self-care" would open the gate to "eats/drinks" which might open the gate to "drinks from cup." The client and service provider stop gating when the problem behavior is identified at an appropriate level of detail. The "gating" operation is useful for saving time during data collection; the gate structure also lends itself to data reduction (from refined to broad categories) necessary to serve program evaluation purposes. The final structural characteristic of RI's that needs to be stated is that of wide potential application: The RI content is relevant to many types of disability, including sensory, psychiatric, physical and developmental. Also, the flexibility and breadth of RI content bodes well for usage within many types of rehabilitation systems and settings, including State-Federal VR agencies, vocation- al workshops, mental health centers, medical rehabilitation settings, etc. To complete the discussion of the RI tool, the functions of indicators (and Rehabilitation Indicators, specifically) will be discussed. First, RI's can be used to describe client variables at any one point in time. Examples: "employment status (at closure): sheltered employment," "duration of passive recreation activities (at entry): 60 hrs/wk," etc. 33 Second, RI's can be used to compare client variables at two or more points in time (i.e., assess change). Examples: "difference between duration of socially isolated activities at entry into program and at present: 8 hrs/wk decrease," "decreased physical barriers in client's home: entry ramp," etc. Third, RI's can be used to state goals and objectives. Examples: "employment status to be attained at closure: competitive/wages," "increased frequency of activities using a prosthesis." Fourth, RI's can be used to describe problems, strengths, and needs. This usage combines description of the present level of a client variable and compares it to a standard or goal. Thus, "types 80 wpm" is a simple description taken out of context, but is a "strength" when compared to the goal of "employment status: competitive, secretarial position." Similarly, the fact that someone has not acquired the skill "washes dishes" may be termed a "problem" or "need" vis a vis the goal of the self-care status of "independent living." The fifth use of RI's is to describe client outcomes. Here, RI's can be used to compare the level of a client variable at closure with a previously stated goal or objective. Thus, if "washes dishes" has been acquired as a skill and was a skill objective, the comparison defines a skill outcome. Before leaving this discussion of the basic uses of the RI tool, it must be noted that RI's constitute value-free descriptors of client elements; values become attached to RI's when used to set goals, describe problems, etc; such values reside in the users of RI's, not in the RI's themselves. In other words, the relevance and value of each RI to a specific client can only be determined in the context of each usage situation. Thus, three contextual dimensions determine the basic uses to which any indicator may be put: 1. Is the indicator used to describe static functioning (at one point in time) or dynamic functioning (change over a period of time)? 2. Is value assigned to the description? 3. If change is being described, is the change causally attributed to rehabilitation efforts? Figure 11 depicts a terminology system reflecting combinations of these dimensions. Thus, for example, a "benefit" is a description of change to which value is assigned and evidence is sufficient to attribute the change to rehab- ilitation efforts. The multiple basic uses of the RI tool--description, assessment of change, goal formulation, problem/strength description, and documenting outcomes-- constitute an additional dimension of RI flexibility. The high degree of flexibility of the structure and functions of the RI tool allows RI's to be built into a wide variety of patterns or models of usage. The nature of such models will also be a function of the purposes which RI's are to address and the constraints of usage defined by the operational realities of rehabilitation settings or systems (see Table 2, P. 35). 34 DESCRIPTION (Single point) OR CHANGE (Multiple points) Description: Change: Attribution of change to the rehabilitation system? Yes No Yes GOAL, Yes BENEFIT GAIN CRITERION No DESCRIPTION No OUTCOME CHANGE FIGURE 11 CONTEXTUAL FACTORS FOR RI MODELS OF USAGE K. Models of Usage Usage of RI's will be discussed in terms of two sets of variables: those exogenous to the RI use and endogenous variables. Exogenous variables, in terms of Table 2 , include (a) operational usage constraints and (b) operation- ally defined problems and needs; these variables define the situation into which RI's will be placed. Endogenous variables describe the Usage Model per se: how RI's are used in the setting. 1. Exogenous Variables The situations into which RI's can be placed can be subdivided into those where (a) information about specific consumers is obtained (or not) and (b) a service setting is the site of information retrieval (or not)/ Examples of non-service settings include funding agencies, legislatures, rehabilitation counselling education programs. Some examples of usage in non-service settings, include (1) Congress or a funding agency specifying eligibility standards in RI terms, (2) and using RI's to survey "needs" in sub-populations of disabled persons. Although these examples point to important potential usage models for RI's, the more complex usage models occur in service settings, involving client participation; in Table 2 the exogenous and endogenous variables for this important subset of situations are outlined. The situation into which RI's will be placed is defined in Table 2 as a function of type of setting, usage constraints and uses of RI inform- ation. Thus, for example, RI use could be expected to differ if the clients in the setting in which RI's are placed are one month VS. one year post- stroke; or, similarly, if the clients are developmentally disabled vs. orthopedically handicapped. RI use would be a function of several setting constraints (1) whether or not information can be obtained observationally or only from interviewing clients, (2) the nature of individual service planning, (3) time limits on contact with clients, etc. The final set of exogenous variables that affect the nature of the usage model is constituted of who and how RI information will be used: For what purposes? Who will be the audience for information? How is such information to be used in client and/or agency decision making? EXOGENOUS VARIABLES ENDOGENOUS VARIABLES Setting Types RI subsets used - Timing of services vis a vis onset of disability - Functioning aspect (s) (i.e., status, API, skill, environment) - Client type - Content area(s) (e.g., vocational, social) - Agency goals - Level of detail (e.g., general, specific) - State-Federal agency, private facility, independent living - Disability-relevant modules (e.g., SCI, psychiatric) - Geographic location (urban, rural, etc.) - Rehabilitation phase (e.g., community-based Setting constraints skills - Present information system's adequacy Data Collection paradigm - Receptivity of "utilizers" to new methods - Timing of data collection (e.g., entry, closure) - Present service provision system - Data source (e.g., client self-report, - Time limitations on information gathering significant other, observation) - Access to clients: interview, observation - Data collector (e.g., counselor, researcher) - Data-gathering resources available: computer - Data recording (e.g., RI forms, client record) Uses of Information Data Reduction - Multiple or single audience: Clients, service - Computer/non-computer models providers, evaluators, administrators, funding agency, etc. - Level of detail of data reduction - Purposes of use: Informational, accountability, Data Uses evaluation of program, research, service enhancement - Describe change, outcomes, goal setting, goal - 'Sophistication' of audience attainment, benefits, problems, objectives, etc. - Relationship of information to decision making - Purposes: accountability, describe functional limitations, define disability functionally, program evaluation, program management, etc. 35 VARIABLES AFFECTING TABLE 2 USAGE MODELS OF RI's 36 2. Endogenous Variables Usage models per se are defined by which RI subsets are used, the data collection paradigm, data reduction and actual data usage. Some usage models may use all RI's; others may include only vocationally- relevant content, or only skills or only those indicators especially relevant to a specific disability group. Some usage models might use RI's in sequences determined by relevance to phases of rehabilitation, i.e., some skills are only useful when job seeking, some are relevant during institutional phases of rehabilitation. Other usage model variables are focussed on RI data-gathering, analysis and uses of RI data. Such aspects will be complex functions of exogenous variables, RI characteristics and the conceptual discussion offered above. This discussion of usage models concludes the exploration of issues relevant to RI product development and potential for use. The major concluding point is that the RI tool has been structured to be highly flexible, with broad utility. The tool is a neutral entity that gains meaning and potential for improving rehabilitation systems only when placed within an appropriate usage model. 37 1. PROJECT TITLE Rehabilitation Indicators: A Method for Enhancing Accountability and the Provision of Rehabilitation Services. Phase III: Dissemination, Demonstration and Refinement 38 2. R & D ISSUES A. Introduction Because the RI tool is an approach to help gather and organize client function- ing information and, thus, will provide an improved and focussed information base in rehabilitation agencies, the use of RI's has potential for impacting on many RSA R&D strategy areas. Although the labels and prioritizing of RSA's R&D issues change from year to year, several RSA strategy themes have remained constant and have been addressed by the RI Project since its inception. Development of the RI tool has been designed to address the following strategy areas: 1. Program planning, program evaluation and program management, 2. Individualized rehabilitation planning, 3. Defining "functional limitations," "disability" and "needs," and 4. Improving the information base for eligibility determination. Rehabilitation indicators (RI's) have a wide potential to influence the course of many RSA issues in that they constitute a language of rehabilitation which will expand the information base to be used by clients, counselors, and other rehabil- itation professionals in planning and accounting for rehabilitation services. The many uses to which RI's lend themselves and which determine their potentially wide influence on R&D Issues are detailed in pp. 9-36, 66-70. The specific ways that RI's will address the strategy areas listed above are defined in the remainder of this section. B. Program Planning, Management and Evaluation A key aspect of program evaluation is the documentation of the effectiveness of rehabilitation programs. In that RI's are descriptors of observable elements of the client's life, their use to document change enhances the face validity of evaluation data. Also, the defining and organizing characteristics of RI's (four aspects of functioning, multi-dimensional content, multiple levels of detail and disability-relevant modules--see pp. 30-32) and the flexibility of basic uses (description, change, goals, problems/strengths, and outcomes--see pp. 32-34) allow flexible response to a wide variety of evaluation approaches and foci. With RI's, program evaluation can focus on an appropriately wide or narrow range of content to fully reflect the rehabilitation agency's area(s) of accountability-- from "vocational only" to "independent living" to an even more broadly-focussed content. Thus, multi-dimensional and observable outcomes defined by RI's could be used to replace uni-dimensional definitions of success/non-success that presently are used to define "closure" within the VR system. Finally, the RI tool's structure and organization allows for ease of data reduction to produce evaluation information suitable to differing audiences. For example, documentation can be reduced from detailed skill indicators to gross skill areas; also information can be obtained at relatively gross levels (status and activity pattern indicators) and/or at relatively specific levels (skills and environmental indicators), with data collapsed to appropriate levels, as program evaluation needs dictate. RI's also will assist the process of program management: directly through personnel supervision and indirectly through better research relating service inputs to outcome (s). Thus, supervision of counselors, could be enhanced within RI usage systems that call for documentation of client data closely paralleling 39 the diagnosis-planning-implementation-monitoring process of counselor and client. The supervisor and counselor both benefit when the information base on which their interaction rests becomes a more valid reflection of service processes. In terms of research focussed on the process of service provision, RI's provide a basic tool for identifying the level of utility of specific rehabilitation inputs in contributing to client outcomes among specific client groups. Specifically some RI usage models will lend themselves to research analyzing causal relationships within rehabilitation processes. When RI usage models in- corporate the client change model described earlier (see PP. 18-22) and document changes accordingly, they lend themselves to studies that, in lieu of control groups, allow partial attribution of client change to rehabilitation system efforts and services, narrowing ambiguities of interpreting results. Thus, the model of service delivery and documentation rather than a research design based on random assignment of clients to treatment and non-treatment conditions forms the basis for exploring cause of outcome. Finally, through an information base that is more valid, multi-dimensional and more relevant, program planning focussed on allocation of resources should be improved. This purpose directly derives from enhancement of program evaluation and basic research described above. Such program planning will be improved to the extent such decisions are based on documentation of effectiveness of services and to the extent such documentation is enhanced. C. Individualized Rehabilitation Planning Certain RI usage models will enhance client participation in service planning and service provision. Clients can contribute more fully through the generic language aspect of RI's and through usage systems that encourage clients to state their goals and problems in terms of observable RI descriptors. Many usage models will assist counselors and other service providers by increasing their effectiveness: in gathering and organizing relevant diagnostic data, in interacting with clients in common language, in developing a plan of services that evidences high internal consistency (goals correlated with objectives which are correlated with services) and in documenting results in a style that complements planning and monitoring. In general RI's could be integrated into the client-service provider inter- action in several ways, some of which are described below: 1. RI's could provide a 'standard list' of client elements (statuses, activities, skills and environmental elements) that may prove useful as a 'checklist' of crucial sets of variables that need to be considered while developing a rehabilitation plan: in gathering diagnostic data and in organizing and translating diagnostic and other data into a form useful for communicating with the client and with referral agencies. 2. RI's can provide the behavioral, observable content from which suitable descriptors may be drawn and formulated as goals and objectives. 3. The selected RI's can be used as indicators of change and of rehabilitation outcomes. The client's progress can be recorded using relevant RI's during the process of receiving services. This usage lends itself both to program evaluation and to enhancement of tracking/monitoring purposes. 40 4. The selected RI's help focus the efforts of the counselor in contacting referral agencies to obtain diagnostic data and feedback regarding progress. Client-counselor interactions can also become more focussed, enhancing client participation. Finally, follow-along services and follow-up studies can also be focussed onto key client elements, defined by RI's. When integrated into rehabilitation processes, RI's will address the purpose of enhancing services, as described above. However, such integration is not a necessary dimension of RI usage. The RI tool will lend itself to many models of usage, including being used as a data collection device outside the planning, delivery and monitoring process coordinated by the counselor. This latter model could be applied to a sample of clients or to all clients who enter a rehabilitation setting. Thus, a 'data specialist' could collect RI data to be fed back (or not) into the client-counselor planning process and/or to be used for basic research and for program evaluation. D. Defining "Functional Limitations," "Disability" and "Needs" In our conceptualizing of RI's, this project's framework (see pp. 23-30) has come to include a conceptualization of "functional limitations, "disability" and "needs"; the development of RI's addresses the operationalizing of these concepts. The conceptual definitions of functional limitations and disability outlined by Nagi (1975) 1 are similar in many respects to the definitions and conceptualization offered within this proposal. Nagi defines functional limitations as "the most direct way impairments contribute to disability" (p.2), and allows that functioning may be limited at many levels (e.g., at the level of cells, organs, systems, etc.). This project defines conceptually and offers a means for operationalizing "functional limitations" only at the level of the organism. Also, the RI Project focusses solely on organismic functioning that is "meaningful," e.g., "brushes teeth" not "flexes arm." Nagi defines disability as follows: "Moving beyond the level of organismic functioning to social functioning, disability can be defined as a form of inability or limitation in performing roles and tasks expected of an individual within a social environment. These tasks and roles are organized in spheres of life activit- ies involved in self-care, education, family relations, other interpersonal relations, recreation, economic life, or employment/vocation concerns" (p.2). In a later chapter based on Moriarty (1975) 2 important implications of the definition are detailed: (1) "Disability is relational: The definition is rooted in the person- in-the environment. The relational or interactive character of a disability allows for considerable fluidity since it is not exclusively a function of the intrinsic attributes of the individual" (p. 15). (2) "Disability is a discrepancy between individual performance and average expectable role performance it is possible to describe disability as norm-referenced" (p.15). (3) "Disability is a consequence to the existence of a physical or mental impairment" (p.15). The conceptualization of disability developed within this project's activities is compatible in many ways with these definitional comments. It is agreed that disability is centered on the discrepancy between "roles and tasks expected of an individual within a social environment" and the client's level of actual functioning, that disability is relational and is "not exclusively a function of the intrinsic attributes of the individual" and that disability is a consequence of impairment. 1. Nagi, S., ibid. 2. Moriarty, J., op. cit., pp. 15-20. 41 However, in defining client social functioning as the locus of disability, the idea that normative expectations provide the sole context for defining the disability discrepancy, is not accepted. Equally valid for some purposes are sets of individual client expectation or, in some cases, level of client function- ing prior to impairment. It may be true that normative expectations would need to be used for locating "the disabled" in the population; however, normative expect- ations are not maximally or solely useful within the individual client's contact with rehabilitation services. (See PP. 23-25 for a full discussion of "disability.") How does one distinguish between "disability" and "functional limitations"? First, both are consequences of impairment, but this project's conceptualization would designate "function limitation" as a person variable (or "skill" deficit, in terms of RI's) while "disability" is a behavioral variable and is a function of person and environment. "Disability" is an outcome; "functional limitation" is a mediator; there may be many functional limitations contributing to a disability (see pp. 23-29). "Needs" are defined within this project's concept- ualization at many levels of meaning (see PP. 25-29). Using RI's one can define primary behavioral "needs" (e.g., employment, increased social contact) and instrumental needs. The type of "needs" most usefully specified are those that define instrumental skills and environmental elements that are needed in reducing the "disability discrepancy" referred to above. These two sets of elements (skills and environmental elements) are what the client "needs" in order to reach goals set in the rehabilitation service context. Skills and environmental supports are defined as instrumental to the client's goal attainment. "Needs" are operationalized with instrumental RI's, defining what 'needs' to be obtained if the client is to minimize his/her disability. This "need" level is most useful in that it is the bridge between primary goals (e.g., employment) and services (e.g., work adjustment training). Skill RI's would define the "functional abilities" the client "needs" to acquire in order to reduce his/her"disability" through attaining rehabilitation behavioral goals. Status indicators and activity pattern indicators provide descriptors which can be used both to define expectations relevant to functioning and to describe actual behavior. These indicators are measurable, observable, and multi-dimension- al, taking into account all categories of roles and tasks mentioned by Nagi in his discussion of "disability" (self-care, education, family relations, other interpersonal relations, recreation, economic life, employment/vocational concerns), as well as transportation and political/legal activities. Thus, in operationalizing disability the discrepancy between expected and actual functioning that defines the level of disability would have two components: discrepancies in statuses and in activity patterns. Skill indicators and environmental indicators can be used to operationalize client needs and functional limitations. Thus, operationalizing needs would follow directly from operationally defining the client's disability: determining the expectation/actual performance discrepancy ("disability"), which would be used as the context to define skill and environmental needs to be addressed if the disability is to be minimized. E. Improving the Information Base for Eligibility Determination RI's offer an approach to eligibility determination based on functional assessment rather than use of medical diagnoses and/or services needed. Thus, RI's could be used as presently constituted to explicate the person's disability, limitations and/or needs; in the future, RI's could be used to predict type of 42 outcome from initial assessment data. F. Other R & D Areas In addition to the impact on R & D objectives described above, RI's may have impact on other R&D objectives if adopted as a basic descriptive tool by other researchers. With better descriptors of client capabilities, problems, goals, outcomes, etc., being made available to researchers and planners, many R&D objectives can be addressed better than with presently available tools. 43 3. PROJECT OBJECTIVES A. Introduction The overriding purpose of the RI project, which has guided Phases I and II of its activities and which continues to serve as the overall target, is to develop a basic tool that will have utility in several ways: * enhancing accountability through the multi-dimensional definition of rehabilitation outcomes in terms of four aspects of functioning, improving processes for individualized rehabilitation planning, through focussing on observable aspects of client functioning: problems, strengths, objectives, goals; and by providing a common, non-jargon language for clients and service providers/counselors. defining "functional limitations," "disability" and "needs"- for purposes of identifying the population in need, of differentiating in the population levels of severity, and of identifying service needs for individual clients. improving program evaluation, planning and management through enhancing the information base relevant to client functioning outcomes and services provided to achieve such outcomes. The operational objectives for Phase III of the RI Project (October 1979- October 1982), are focussed on one key factor: optimizing utilization of RI's in diverse rehabilitation systems by the end of Phase III, i.e., establishing sufficient credibility, utility and momentum so that RI's will increasingly be adopted for use by rehabilitation settings and researchers such adoption becoming less dependent upon RI Project efforts. To establish sufficient credibility, utility and momentum, project activities will be aimed at two types of RI tool dissemination: 1. Demonstration models, in which RI's will be established in a variety of rehabilitation settings, to be used in a variety of ways, with varying client populations and to serve multiple setting purposes. Demonstration will serve two major RI Project needs: a. Enlarging the RI data pool to address issues of credibility (increas- ing the methodological foundations of the instrument), b. Evaluation of a variety of usage models, to enhance credibility and utility of RI's by analyzing and verifying usage in a variety of models and settings. 2. Research by others, in which RI's will be used by other researchers to address their own research questions. The researchers will share their data with the RI Project and will in effect be evaluating additional usage models. Dissemination for demonstration and research purposes will address project needs (a) to expand the number of settings using RI's (to increase awareness and momentum), (b) to increase the utility of RI's by expanding the number of tested usage models and by obtaining data to provide a basis for developing 44 second generation RI packages, and (c) to increase credibility through evaluation of usage models and providing additional evidence regarding reliability, validity and relevance criteria for RI tool development. Thus, two interactive routes will be taken to optimize utilization: direct dissemination and use of demonstration and research feedback to improve product credibility and utility. B. Operational Objectives In order to optimize future utilization, several objectives will be addressed: 1. Demonstration: RI tools, guidelines and training programs will be disseminated to rehabilitation agencies: *to expand awareness of and use of RI's, *to evaluate the impact of RI use on agency parameters (which will specifically be a function of the usage model established), *to provide feedback to the RI Project in the form of client RI data, *to create usage models of wide applicability to other settings, and *to identify factors necessary to maintain the use of RI's in varying usage models. Demonstrations will be designed to fit usage models that are expected to be widely applicable to other settings. Usage model variables are outlined in Table 2, pp. 34-36. Two sets of variables are outlined: exogenous and endogenous. The former are variables describing the situation into which RI's will be placed: *Will RI's be used with clients or not? *Will RI's be used in rehab service settings or not? * Type of setting Usage constraints Users of information Endogenous variables describe how RI's are to be used within a given situation: *Parts of the RI tool used *Data collection methods *Data reduction methods *Uses for RI data Given these sets of variables, usage models will be developed to be broadly applicable to the rehabilitation field. Thus, emphasis will be focussed on models where RI's are used with clients and within settings (as opposed to non-setting or non-client models). Models will be established in a diversity of setting types (with at least one state agency and at least one non-state agency setting, e.g., independent living, medical rehabilitation, etc.), minimizing contraindicative usage constraints (e.g., low receptivity among potential utilizers), and serving a variety of information uses (e.g., at 45 least one setting where RI information will be used in client planning will be selected). Depending on the exogenous and endogenous variables within specific demonstration settings, evaluation of RI use will explore the following types of issues: a. Influence of RI usage on the accountability of rehabilitation settings: 1) Increased accountability regarding the access of clients to rehabilitation settings. Service providers can describe with sufficient specificity the types and severity of disability of clients who gain access to rehabilitation services and those who fail to gain access. 2) Increased accountability regarding outcomes of rehabilitation. Service providers will increase their specificity in describing observable, multi-dimensional outcomes of rehabilitation (primarily in terms of goal attainment and sub-goal attainment). 3) An expanded information base for accounting for access and outcome will also be available to service providers for improved decision-making at many levels: client and counselor development of individualized plans, program planners' and evaluators' formulation of program modifications, and funding sources' distribution of resources. 4) More precise definition of the relationships between rehab- ilitation inputs, services and outcomes will be developed using RI's as a tool to improve decision making. b. Influence of RI usage on the provision of rehabilitation services: 1) Access of the severely disabled to rehabilitation settings should be improved, with development of more specific accounting for access in terms of severity of disability (defined functionally). 2) Individualized planning should become more systematized through the usage of RI's as an information base for goal selection, for defining goal-relevant client needs, for setting environmental and skill sub-goals and for tracking client progress; follow-up of progress and needs once clients leave active participation in rehabilitation should be improved using RI's. 3) Enhanced speed and coordination of services, through more systematic initial planning and tracking of progress. 4) Greater satisfaction of the client and counselor, through usage of RI's. C. Influence of RI usage on outcomes of rehabilitation services: 1) The congruence between input/process variables and outcomes should be increased, given the enhanced RI information base and a more systematic individualized planning process. 2) The range of goals that is accepted as valid by rehabilitation systems can be increased to include statuses and activity patterns. beyond the presently accepted (within the State-Federal VR system), 46 but limited, vocational statuses. 3) Longer maintenance and greater advancement of outcomes of rehabilitation programs can be attained to varying degrees, given enhanced planning and optimal implementation of follow-up mechanisms based on RI's. 2. Tool and Package Refinement: RI materials will be refined to enhance their credibility and their utility within a variety of usage models: a. Separate status, activity pattern and skill packages developed during Phase II will be refined; additionally, all packages will be integrated into a second generation package of all sets of RI's to be used concurrently. b. Training programs appropriate to each RI package will be refined to better address the needs of varying levels of utilizers. C. As data are obtained and analyzed (from clients of multiple rehab- ilitation settings and from normative samples), second generation indicators will be derived from the present RI descriptors, reflecting (1) the differential relevance of subsets of RI's for describing outcomes for selected groups of clients and (2) underlying factors in changes occurring within descriptor sets. d. Environmental indicators will be developed to fit criteria utilized in developing other RI's (i.e., observable, potentially changeable, relevant to client functioning and meaningful). EI's will be developed into a separate first generation package and then integrated into the second generation combined package. e. As second generation indicators and second generation packages of indicators are developed, they will be disseminated as described in. objectives#1 and #3. f. Models for data analysis and for use of RI's as a mode of communication will be refined and incorporated into the RI packages. 3. Dissemination: Awareness of RI's--what they are, their potential uses, and results of field usage--will be expanded throughout the rehabilitation field (among consumers, counselors, administrators, evaluators, researchers, educators, funding sources, etc.). Several strategies will be used to address this objective: a. A project newsletter (RI Update, see Appendix X) will continue to be mailed to a wide variety of interested persons, being specifically focussed on evaluators, administrators, researchers, educators and consumers. b. Presentations and publications will be expanded and targetted for varying audiences: rehabilitation counselors, researcher evaluators, consumers, and administrators. C. RI packages will be disseminated to independent researchers for their use; such researchers must agree to use RI's according to project 47 guidelines and to share resultant data with the RI Project; the researchers will receive consultation from a project consultation team, as needed, and will be encouraged to publish their results. d. Workshops will be offered near the end of Phase III to teams of agency representatives, where team members represent the key persons in usage models focussed on in the workshop. The workshops would be designed to share sufficient RI information with the teams to create a demand for adopting RI's in the agency. Workshops would be followed by appropriate Project consultation to assist the adoption and utilization process in agencies. 4. Defining "Disability" and "Needs" Use of RI's for defining disability functionally will be evaluated, in conjunction with the development of second generation (derived) indicators. Disability-relevant, factored indicators will be used with clients to describe disability--to analyze the utility of the RI approach compared to other non-functionally-oriented methods (e.g., medical diagnosis). 48 4., 5. WORK PLAN AND METHODOLOGY A. Introduction The purpose of this Section is to define, as far as possible, the RI Project's strategy for addressing its Phase III objectives and approaches for implementing the strategy. It is not possible at this time to define all the tasks needed to address the objectives, the appropriate sequencing of tasks and methods applicable to tasks, because during Phase III the nature of demonstration activities will be contingent upon which models of usage are negotiated through Project/field setting interactions. The Project is not proposing to evaluate pre-specified designs for using RI's, but instead to evaluate several usage models (see pp. 34-36). "Usage models" refers to an approach for using RI's that is setting-specific. Therefore, tasks needed to implement usage models will be specific to each model. This provides field settings with the opportunity of aiding in the design of demonstrations insuring that each demonstration is constructed to fit spe- cific sets of needs/concerns that arise in the field. The Project's stance is that developing a pre-conceived research plan would constitute a weakness in project design and would be counterproductive in addressing the goal of enhancing future utilization. In our encounters with field settings, it has been our experience that they "turn off" when they are asked to march to a researcher's drum; however, when we've incor- porated into RI usage the setting's needs, data gathering approaches, and resource constraints, the RI product has been accepted and found useful. In this proposal, therefore, the issue of a priori "looseness" in being able to specify tasks and methods has been addressed in three ways, development of: (a) strategies to accomplish project objectives, (b) using a consultant and review panel mechanism to monitor strategies as they evolve during Phase III into specific task-anchored plans and (c) specification of tasks in those activity areas where such detail is possible. B. Core and Modular Activities Given the basic objective of Phase III -- demonstrating the utility and enhancing the credibility of RI's, to optimize future utilization -- and given the numerous usage models which might be demonstrated, it is clear that the RI Project cannot implement all important or all possible demonstrations. If this approach had been chosen, the Project would have had to establish ten or twenty demonstrations before a broad enough sample of usage models would have been demonstrated; however, each such demon- stration will require significant staff resources to establish, to monitor and to process data emanating from it. Ten or twenty demonstrations would require a huge staff. Therefore, the Project developed the strategy pro- posed herein: core and modular activities, with core and modular staff. Core activities will include (1) establishing several demonstrations, the number to be limited by staff resources, (2) refinement of the three types of RI's that have been developed and (3) implementing basic dissemi- nation activities. Modular activities are those which are equal in impor- tance to core activities (e.g., development of Environmental Indicators), 49 or of lesser priority (e.g., offering workshops to enhance utilization) or are demonstrations beyond the number that can be handled by core staff. The defining characteristic of modules is that the funding of each is separable from the core: each module can be attached to the core to add to the total Project effort, but the modules are not necessary to the basic effort. The core-and-modules strategy provides a dual advantage: (1) it will allow the Project to request funding in a way that allows the funding agency to view the Project as a whole, but fund only those aspects that fit its own priorities and (2) the Project can phase in as it progresses through Phase III additional modules of activity -- as new modules are funded or as core resources are freed up from completed tasks. C. Expected Progress; Project Staffing Three inter-related areas of activity will be implemented during Phase III: demonstration, tool refinement and dissemination. Some general comments are required before proceeding to discussion of tasks and methods. First, we need to clarify what project progress is expected prior to Phase III, in the remaining months of Phase II. 1. A plan, based on a literature review and the canvassing of a Task Force, will be written regarding development of Environmental Indicators. 2. Demonstration and dissemination plans will be updated, to reflect continuing field experience and results of RI data analyses (exploring validity and reliability issues). 3. Packages of RI's will be produced, in a state ready for intro- duction into settings for demonstration purposes. Packages will con- tain the RI tool, guidelines for data collection, simple training materials and discussions of data analysis as it affects users of RI's. Separate packages for status, activity pattern and skill indi- cators, respectively, will be developed, based on the material in Appendices I-V, but revised in accordance with results of present field test activities. Each package will be professionally designed and printed. Second, the role of respective staff members in implementing Phase III project activities needs definition: 1. The Project Coordinator (Brown) will be responsible for coor- dinating and supervising all project activities; this includes the activities of the Data and Field Coordinators. She will be respon- sible for negotiating with field settings to establish demonstration projects and for designing suitable usage models and evaluation plans relevant to demonstrations. She will be responsible for dissem- ination activities: coordinating consultation provided to independent RI users, publication of the RI Update and development of articles and reports for publication. Finally, she will be responsible for revising and refining RI materials, coordinating input from the field and from data analyses. The Project Assistant (Fabian) will assist the Coordinator in these activities. 50 2. The Research Supervisor (Gordon) (20% time) will serve in the role of advisor to the Project, Field and Data Coordinators. His responsi- bility is in the area of research design and data analysis -- insuring that demonstrations are appropriately designed to address cogent issues and that data analysis proceeds smoothly and competently in supporting the Project's objectives. He will conceptualize data analytic questions and decide appropriate modes of statistical analysis. 3. The Data Coordinator (Farber) will be responsible for all RI data analysis. She will be responsible for translating project objectives into data analytic strategies, including assisting in the design of demonstrations and independent research efforts. She will be responsible for monitoring incoming data to insure quality control and for providing feedback to the Field Coordinator. She will be responsible for pro- viding appropriate input to the Project Coordinator's revision of RI materials and will assist the Coordinator in concept development and report writing. She will be assisted by the (half-time) Data Analyst (Buccheri) who will primarily be responsible for computer programming and other aspects of data analysis; additional assistance will provided by two Data Assistants one hired on a consulting basis at the start of Year 1, the second as a staff member at the start of Year 2. Consultation will be provided by the Computer Consultant (Lucido) and by the Research Supervisor. 4. The Field Coordinator (TBH) will assist the Project Coordinator in establishing demonstration activities and in consultation to inde- pendent researchers. He/she will be responsible for liaison with all settings using RI's -- monitoring progress, problems and needs. He/she will be responsible for training staff of settings to use RI's and for development and revision of educational materials. The Field Coordinator will be assisted by a Project Assistant (TBH). Consul- tation on training and educational materials development will be pro- vided by the Training Consultant (Randolph). 5. The Secretary (Harris) is responsible for arranging project meetings and for staff travel, implementing financial aspects of the project, typing reports and project correspondence, assisting project personnel in literature reviews and maintaining the project bibliography. D. Core and Modular Activity Areas With these comments regarding general strategies, expected progress and project staffing, the context has been laid for indicating the activi- ties that are planned in Phase III to carry out project objectives. The Project activities can be categorized in terms of core and modules and in terms of three areas of emphasis: demonstrations, dissemination and RI refinement. The resulting six categories are presented in Table 3 and dis- cussed below. 1. Core Demonstration Activities A six-step process is envisioned relevant to establishing each demonstration site: negotiation, plan development, plan review, training, implementation and evaluation. The process is viewed as cyclic, with negotiation initiating the sequence and also a logical sequelae of the evaluation phase. CORE MODULES D E --Usage Models/Demonstrations: --Usage Models/Demonstrations: M 0 1-State-Federal Agencies 1-Additional demonstrations beyond core 2-Private facilities resources N S 2-Computer-based usage T 3-Using RI's to define "disability," "needs" R and "functional limitations" A 4-Use of RI's in Rehabilitation Counselling T programs I o N D U -Disseminating RI's to independent --State Agency Advisory Committee I T utilizers, with consultation S I -Dissemination - utilization workshops S L -Publications ) Basic concepts and E I -Presentations. usage models -Educational program development M Z I A "RI Update" newsletter N T A I --Utilization and Advisory Committees T 0 I N o N T R --Status, activity pattern and skill --Environmental Indicators development 0 E packet refinement 0 F L I -Integration of RI packets N E --Training program refinement M E Data reduction and communication N approaches T -Second generation RI's TABLE 3: Phase III Activities 51 52 In preparing for Phase III, two types of settings have been the focus of negotiations: State-Federal Vocational Rehabilitation agencies and private facilities. At this point the RI Project is in the discussion stage with many settings, attempting to develop usage models that will optimally address Phase III objectives. Our primary criteria are selecting settings where results of demonstrations will be applicable to many other similar settings and where potential utilizers indicate a cooperative spirit at the outset. (It's impor- tant eventually to address the issue of rehabilitation personnel who are resistant to using RI's; but addressing this issue at the outset of demonstration activities seems a poor strategy.) In attempting to establish demonstrations, we have adopted a strategy of both responding to contacts initiated by settings and initiating the contact ourselves. In negotiating with the setting we state very carefully that we are there to learn what their problems and needs are in order to design a usage model that will address setting needs as well as Project objectives. We offer to assume costs of training, materials, liaison and data analysis for defined (and limited) usage models in a defined number of settings, clearly indi- cating that any expanded usage may require the setting's allocation of resources or the necessity of requesting additional modular funding. The following is a summary of negotiations up to this point; in Appendix XVIII, correspondence is included that refers to planning for future demonstrations. a. State Agencies: Project staff have met with representatives of central and/or area offices in Ohio, New Jersey and New York. In each case several specific ideas have been suggested by the agency staff and/or administrators regarding possible usage models and discussed in these meetings. The correspondence to Roland Sturm (NY DVR), George Chizmadia (NJ DVR) and Mary Nies (Ohio DVR) in Appendix XVIII incorporates these ideas. However, they are summarized here to make a point: negotiation has been an experience of expanding awareness of new ways RI's can be used -- field personnel have stimulated thinking about how their needs can be addressed with RI's in novel ways; they have seen avenues of use and possibilities not previously identified: 1) Analysis of the relationship between RI use and two approaches to counselling: counselling by objectives and other. RI's could be used by both types of counsellors; also included in the research would be a control group not using RI's. 2) A similar study would focus on the relationship of RI use or non-use to two other styles of counselling: counsellor-as-coordinator of services versus counselling with emphasis on counselling. 3) Using RI's to evaluate SSI/SSDB screening results: to explore client variables that predict successful rehabilitation. 4) Use of RI's by counsellors who work with developmentally disabled persons entering the process of deinstitutinnal- ization. 53 5) Use of RI's in setting S with multidimensional goals, such as work activity training centers. 6) Use of RI's to study "homemaker" closures, to define what gains have been made that would justify a "26 closure." 7) Use of RI's to help define job readiness. 8) Finally, a use mencioned most frequently is use of RI's by counselors in general offices -- to help improve client planning working in some settings toward a computer-based usage model. With each agency contacted, the agreement has been reached that the agency and Project continue discussions, leading toward demonstrations being established, if the respective needs of the state agency and the RI Project can be incorporated into a usage model plan and if state agency staff agree to participate (in Ohio, agency staff initiated contact and, therefore, this latter requirement has been addressed). In all cases, the possibility of usage models being implemented appears quite high, in terms of positive reactions of those participating in the negotiations. b. Private Facilities: Several private agencies have expressed interest in using RI's; however, meetings leading toward the establishment of demonstrations have not yet commenced. Repre- sentative letters of inquiry are presented in Appendix XVIII. These settings may be dealt with in one of two ways: (1) pro- viding consultation to them to establish usage of RI's within their own design for research or service provision (see Core Disseminations below) or (2) establishing a demonstration where the design would constitute a usage model, where RI Project interaction would be more intense and where the RI Project would retain greater control of data analysis. In any case, if RI use is established, settings will be required to feed back to the RI Project RI and other relevant data. In order to explore other setting's interest in using RI's, the Spring 1979 "RI Update" (to be mailed on April 30) will request settings which have interest in possibly becoming a demonstration setting to contact the Project. The purpose of the negotiation step is to see if sufficient interest exists on the part of the setting and the Project to continue the process, to clarify what RI's are (and are not), to discuss possibilities for usage models and to define areas of mutual and separate responsibility if a demonstration materializes. If both parties agree to continue, plan develop- ment follows. The second step of the process is plan development, an interactive process between the RI Project and field setting. Each plan will have three segments: usage model specification, RI evaluation and agreements. The usage model segment will specify each of the endogenous variables listed in Table 2, p. 35: what part of the RI tool will be used, how and by whom will the data be collected, how will data be analyzed and to fit what purposes. The RI evaluation segment will define relevant 54 questions concerning evaluation of RI use and its impact on setting processes, outcomes, etc.. A sample of relevant concerns is provided in the Phase III Objectives, pp. 45-46. The evaluation segment will also specify methods that will be used to address the questions. The third segment of the plan, "agreements," will clearly describe (1) the calendar of events including when the demonstration can be expected to start and RI project involvement terminate, (2) the nature and timing of training, (3) the nature and frequency of project and setting liaison, (4) how RI data will be analyzed and fed back to the setting, (5) how results of the demonstration will be published, (6) costs to be assumed by each party, (7) processes to nego- tiate changes in the plans and to negotiate expanded use, (8) the location of offices and names of staff to be involved in the demonstration, etc.. The plan will be written by RI project staff after the groundwork is laid in planning sessions with relevant setting staff (counselors, supervisors, administrators, etc.) and in direct observation of present operations. The plan will be signed by representatives of the RI project and the field setting. The third step is Plan Review. At least three members of the project's Utilization Committee (see p. 85) will be asked to review the plan. Each member of the review panel will discuss the plan with project staff and then provide written comments (critique and suggestions). The fourth step is training of field setting staff to use RI's. Project staff will be responsible for this aspect of the demonstration. We expect to use the Training Consultant to identify training issues (during the plan development phase), guide the development of appropriate materials, and implement a training program. She will be assisted by the Field Coordi- nator and/or Field Assistant and will phase herself out of direct involvement as project staff can assume more training responsibilities. Training will continue, as needed, during the implementation phase, and is discussed below. The fifth step is implementation of the plan. Setting staff will pre-test RI use and with RI staff decide what modi- fications are needed. Once the usage is stabilized project- field interactions will occur as defined in the plan; additional training will be provided by the project if during the liaison process additional needs are identified. Also, as RI materials are refined by the project, they may be offered to the setting for use, if suitable. The final step of the first iteration is evaluation. The RI project will gather relevant data into a demonstration report; the report will identify the number of clients and providers involved, the uses of data, problems encountered, the impact of RI use on setting parameters, etc.. This information will serve as the core of concern in an evaluation meeting between project and setting staff; the meeting will be used to 55 come to final conclusions and suggestions regarding the demonstration. If the situation warrants, it will also serve as the first step (negotiation) of a second iteration of inter- action between the project and setting. The result of the meeting will be a written description and evaluation of the demonstration which may be suitable for publication. In the core aspect of project activites, a minimum of two demonstrations will be established, with the probable number being four or five. The number will be increased past two until core staff resources are fully engaged; additional demonstrations would then be developed only as additional funds are acquired. For those field settings expressing interest in using RI's above and beyond the core, two avenues of response will be available: developing modular proposals for funding as a demonstration, or the project providing consultation on use of RI's as an indepen- dent effort -- both of these options are discussed below. 2. Modular Demonstration Activities As discussed above, any demonstrations above and beyond the number feasible within core resources will be funded as separate modules. One usage model that intrinsically is beyond core resources is development of computer terminal-based RI use in a service setting. Establishing such a demonstration would require modular funding. Demonstrations to be included in the core will focus solely on usage models where the exogenous situation (see pp. 34-36) is defined by client involvement in rehabilitation settings. Modular demon- strations, on the other hand, may be developed that include non- rehabilitation setting use (e.g., in educational program models of usage) and/or uses where clients are not involved in data gathering (e.g., specification of eligibility requirements). In this vein, demonstrations to address the objective of defining "disability" and "need" functionally will only be developed through modular funding. 1 3. Core Dissemination/Utilization Activities Two aspects of dissemination will be emphasized: disseminating the RI product and the RI concept. (See also pp. 61-63 for a dis- cussion of dissemination/utilization strategies.) First, RI's will be disseminated to the demonstration setting as defined above, but also to other researchers and service providers. These "independent" users of RI's will include some of the present field test settings that are to continue using RI's (see Table 1, pp. 3-5) as well as other settings (see Appendix XVIII for some potential sites). The independent users will follow this avenue of involvement rather than becoming demonstrations, if establishing and evaluating the desired usage model is of lesser priority for the RI project. For example, evaluation of a usage model that gathers data from clients solely for purposes of program evaluation is not the highest priority to the project since many such models have been established and studied during Phase II as part of field testing. 1. The project is also willing to work with state comprehensive rehabilitation programs in those states interested in I & E development in the RI area, and with other types of programs in the State-Federal vocational rehabilitation system. 56 The process for establishing RI use with independent users will be a less time consuming and detailed process than for setting up demonstrations. Negotiation will largely occur by letter and telephone. Then the project will provide consultation to the potential user to develop a plan for use, incorporating many of the points dis- cussed above, but less formally defined. The plan will focus on the usage model specification and on agreements about data sharing (which all RI users must agree to) and publication. The "evaluation of RI use" plan segment may be developed (or not) but implementation will be the responsibility of the user not of the project. If appropriate, training will be provided by the project. During implementation, RI field staff will maintain liaison largely to monitor data collection and for trouble-shooting. The product of the dissemi- nation to independent users will be project and/or user publications (focussing on or methodologically highlighting RI's) and data, to be fed into RI tool refinement (see below). The second aspect of dissemination centers on dissemination of the RI concept and of evidence regarding use of RI's. Several paths will be taken here, some aimed at expansion of the level of awareness and knowledge in a broad cross-section of the rehabilitation community and some aimed at selected subsets within the community. For example, in April 1979 a project manuscript was mailed to Evaluation; the paper (see Appendix XIX) describes the project in general: its historical context, purposes, product, uses, etc.. This paper is aimed at a general audience and will be revised to fit other audiences (e.g., rehabilitation counselors). Several other papers are presently being written: descriptions of the client-change model, the accountability model, and (from field testing) results of the deinstitutionalization program evaluation (see Appendix XIII), the SCI National Center field test involvement and the study of pain patients and spouses at the University of Washington. Now that RI materials are ready for demon- stration and dissemination to a wider audience, dissemination of the RI concept to a wide audience through expansion of presentations/ publications has been planned, during Phase III. An important step will be taken to develop publications suitable to a rehabilitation counselling/state agency audience: Members of Project Committees who can "speak the language" of this large target audience will be asked to co-author relevant papers and will also be used as co-presenters of papers and talks to relevant groups (e.g., CSAVR). Another path to dissemination of the RI concept is the "RI Update" (see Appendix XII). The project newsletter began publication in January 1979, with the second edition being mailed on April 30. It is sent to approximately 1,000 persons, primarily administrators, researchers, evaluators and all persons who have previously expressed interest in the project. In the present issue, requests are made for consumers who wish to be placed on our mailing list, for persons interested in participating in the Environmental Task Force and for settings/individuals interested in exploring use of RI's as 57 demonstrations or independent users. Each issue of the RI Update (four per year) will report on project progress, on availability of RI materials or other avenues for dissemination and will also discuss aspects of the RI concept (e.g., how RI's can improve IWRP formu- lation, how RI's can help in client-counselor and counselor -other rehabilitation professional communication processes, etc.). An important activity especially with regard dissemination and utilization will be the yearly convening of the project's Utili- zation and Advisory Committees. Each group reviews project progress, plans and materials to provide a broad-based critique of our course of action. (Both groups met in recent months, in fact, to provide advice and suggestions relevant to this proposal's development.) 4. Dissemination/Utilization Modular Activities Activities defined as modular here are those utilization/ dissemination efforts beyond the basics described above and for which funding is separable. Three activity areas have been defined at this point: First, many issues relevant to dissemination/utilization of RI's in the State-Federal VR system have arisen in project discussions since its inception. Although, representatives of several state agencies sit on the project's committees and task forces, a broader degree of input will be useful. The project will develop a modular proposal to request funds to support meetings of a State Agency Advisory Committee. Ten to fifteen counselors, supervisors and administrators would meet twice a year to provide input of several types: (a) general advice relevant to use of RI's in state agencies (e.g., strategies of approach, possible usage models), (b) how to create a demand for RI's among counselors and ways the project can support their attempts to get RI's installed in their agencies, and (c) critique of RI's as they évolve into derived "indicators" " --- such critique would be viewed as part of the validation of the degree to which the derived "indicators" are indicative of meaningful rehabil- itation progress, from the point of view of experienced service providers. 1 Second, toward the end of Phase III, to enhance utilization in selected types of settings, a workshop or series of workshops will be presented, if modular funding is obtained. Teams of personnel (e.g., supervisor and counselors, medical rehabilitation teams, etc.) would be brought together to learn RI usage, benefitting from results of demonstration and independent use. Finally, funds will be sought to support the Training Consultant's producing videotape educational and training materials for use in state agencies and other settings. These materials, like the workshop described above, will be distillations of Phase II and III field experiences. 1. The Project would request assistance of CSAVR in selecting the Committee. 58 5. Tool Refinement: Core Activities Efforts will be focussed to utilize the large amounts of data generated in demonstration and independent settings to enhance the acceptability, and credibility and utility of the RI materials. Acceptability will be addressed through developing better, less time-consuming training materials, partially as a function of simpli- fying RI's per se and partially through using a professional consultant. Acceptability will also be the key factor in analyzing RI's to produce better branching systems: to reduce the time needed to gather data from clients. Credibility will be addressed through expansion of a criteria referent system, whereby subsets of RI's will be correlated with other types of measures (e.g., measures of affect, ADL scales, etc.) to create a set of anchors of the meaning of RI's. As far as possible, with core limitations, some RI norms will also be obtained to provide an additional "layer" of meaning to RI assessment. Increasing the credibility of RI's is also the purpose of continuing efforts to increase our knowledge of factors influencing reliability of data- gathering; project staff also will continue to refine training programs to address problems that reduce reliability of measurement. Finally, extensive data analyses have commenced in Phase II (see pp. ) to study aspects of validity, particularly the sensi- tivity of RI's to detect change and other types of expectable dif- ferences in client functioning (e.g., differentiating between types of disability and between levels of severity). Utility of the tools will be the focus of a major portion of tool refinement efforts. The development of an RI package that integrates all four types of RI's will add greatly to tool flexibility; development of the integrated set will be based on experience in demon- stration settings with integrated use. Tool utility will also be aug- mented through deriving second generation indicators from the simple descriptions. This development will be a function of obtaining a large amount of data on diverse populations which can then be sub- mitted to factor analytic approaches. Development of second gener- ation indicators will also simplify data reduction and communication aimed at those outside the client-counselor interaction: present RI's communicate easily when used by clients and service providers but more clumsily serve in the role of communicating to outsiders. Derived indicators will contain larger clusters of meaning and, thus, hold. promise to be more useful than simple descriptors in conveying patterns of outcome. 6. Tool Refinement: Modular Activities A key component of functioning rests in the environment. Envi- ronmental Indicators are the part of the RI tool that recognizes this fact. Their development is essential -- to complete the RI product, but more importantly to insure within the RI tool a set of indicators that point to the environment's contribution to disability and rehabilitation. EI's provide a necessary counterpoint, balancing 59 the attention to client factors with factors outside the client. Inclusion of EI's in an accountability system is necessary if service providers are to be given adequate credit for their efforts to change the environment's contribution to disability. Also, service providers need reminders of the multiple environmental factors -- physical, social and programmatic environments -- that influence the client's attainment of goals. In Appendix VII a modular proposal is presented requesting funds and outlining tasks for this aspect of tool development and refinement. 60 6. UTLIZATION PLAN A. Expected R & D Product The RI Project's expected product has been described extensively throughout this proposal. In sum, the Project's product consists of RI packages, the concept of usage models -- with several tested and evaluated, and the project framework. RI packages are expected to evolve throughout the course of Phase III; initially packets will contain single indicator sets (e.g., skill indicators only), where the "indicators" are really "descriptors" that infer or "indicate" very little beyond what is directly described. As experience is gained in using RI sets together, more refined RI packages will be developed that integrate the indicator sets. Finally, by the end of Phase III, sufficient data should be available so that derived, second generation indi- cators can be produced; these "indicators" will be composites derived from the first generation descriptors. Both types of RI's will, we believe, be useful in different usage models. As RI packages evolve, the new (and old versions, as appropriate) will be phased into dissemination. RI packages will contain not only RI's per se, but also guidelines and other training materials; these materials will vary according to the usage models into which RI's are placed. The concept of usage models is a key aspect of the expected product. This concept emphasizes flexibility of using RI's and that RI usage (endogenous variables) is a function of setting variables (exogenous) (see pp.34-36). This is a crucial point: RI usage in each specific situ- ation is a function of many variables in the situation; within limits RI's can be "custom fitted" by the utilizer. The listing of exogenous and endo- genous variables in Table 2 lists the a priori dimensions of situations that will affect usage, as well as the dimension of usage per se. Thus, "usage models" is not an empty concept; the important parameters have been hypo- thesized and are being explored in Phases II and III to evaluate their respective influence on usage models. Not only is the concept of usage models important to the RI product, but also the demonstration and evaluation of several models is a keystone of the utlization plan (see below). The project principals believe it is of highest priority to provide evidence of "good" usage with positive pay- offs to participants, for the obvious reason that such evidence will lead to greater utlization, but also to establish positive models for rehabil- itation settings to emulate -- the "good" models providing necessary and hopefully sufficient guards against users developing less beneficial usages. Any tool can be used to the detriment of those it is supposed to help, RI's included; strong usage models that are beneficial to participants should help avoid the inappropriate use of RI's. Finally, the Project Framework completes the RI product. The Frame- work points toward approaches to enhancement of accountability, to defining 61 "disability" and "needs," to provision of more focussed client services, and also points toward systematic concepts regarding client functioning and how change in functioning can be more precisely conceptualized and measured. B. Target Groups Two sets of target groups are envisioned as the eventual utilizers of RI's. (For an expanded discussion of usage, see pp. 12-36 and pp. 38-42 1. Resource providers Clients of multiple types of rehabilitation settings in all disability categories (i.e., sensory, physical, psychiatric and deve- lopmental disabilities) are included in the target group. It is expected that the use of RI's by consumers can be either setting-based or occur outside the context of rehabilitation service provision (e.g., in consumer surveys of "needs"). The market, using SSA's esti- mates of disability would be 23,000,000 disabled adults (plus an un- specified number of disabled children). The second set of resource providers includes legislators and others who provide resources to rehabilitation systems. 2. Service providers Direct service providers, funding agency personnel, and service planners constitute the second target group. Rehabilitation settings would include State-Federal VR agencies, independent living settings, private medical rehabilitation facilities, psychiatric hospitals, mental health centers, work evaluation centers, workshops for the disabled, services for mentally retarded persons, etc.. Estimates of the size of this target group have not been developed. C., D. Dissemination and Utilization (See pp. 51-57 for additional discussion of approaches to dissemi- nation and utilization to be taken by the Project during Phase III.) Throughout the course of the RI Project, development, dissemination and utilization have been intertwined concerns. Each area of concern has been differentially emphasized from Phase I to Phase III, but each has been influenced by the others. Because utilization of RI's within rehabilitation settings will require changes in service delivery, service planning and accountability/evaluation processes, the amount of inertia to be overcome is large. Thus, at the beginning of Phase I the authors of this proposal felt that if RI's were to be adopted, development of the product and its dissemination would need to be heavily influenced by future concerns of utilization. Similarly, because utilization will require change within systems, dissemination needed to be carefully planned. Four overlapping themes have been and will continued to be carried out: (1) inclusion of 62 representatives of the rehabilitation community in all phases and aspects of project functioning, (2) design of a product to maximize future utili- zation, (3) development and implementation of a strategy to disseminate the project concept and project materials, and (4) development and implementation of a strategy in Phase III to optimize future adoption of RI's. First, members of the rehabilitation community have been active parti- cipants in all phases of project activities. The 75+ members of the project task forces and committees (see pp. 83-89) helped develop the structure and elements of RI's. (The Environmental Indicators Module -- See Appendix VIII -- proposes to utilize this process to assist in developing EI's). Not only in terms of helping the development of RI's but also in terms of advising the project regarding utilization and dissemination, these repre- sentatives of multiple viewpoints in rehabilitation have been and will con- tinue to be crucial to the project's success -- the proposed State Agency Advisory Committee (see P. 57 ) is an ongoing part of this aspect of insuring involvement. Additionally, the project will have during Phase III, in its Utilization Committee, not only a forum to continue to spell. out strategies and priorities for dissemination/utilization, but also a larger body of field representatives to act as reviewers of specific demonstration plans. The Advisory Committee plays a strong part in evaluating project progress. A newly evolving role has been defined by the project for reha- bilitation setting personnel who become involved in using RI's: defining them as "partners in design" of appropriate usage models and "fellow problem solvers" with regard to improving the RI package. Our message to users is that although project personnel work full time on RI's and therefore may "know" more about them, setting personnel who use them with clients gain a complementary form of expertise -- their sharing their ideas, reactions and suggestions with us is their contribution to improving and evaluating RI's. In all of these efforts, the RI Project's goals have been to benefit from the point of view of diverse rehabilitation "insiders"; to insure the field's perception that they, too, have been part of RI's; and to expand the field's awareness about RI's through word of mouth of those who have had direct contact with RI's. Second, the RI product has been shaped by the diverse input described above, to better fit the diverse needs of diverse settings. The concept of a flexible RI tool set within an appropriate usage model was developed to enhance potential utilization. Third, a dissemination strategy has evolved that attempts to optimize future utilization, while recognizing project constraints -- especially in terms of speed of progress in developing RI's and limited project resources. The project has tried to avoid disseminating the RI concept too far in advance of the RI materials' being sufficiently developed to "make good" on the promises intrinsic in the concept. Thus, early dissemination of the concept was funnelled through two media: the participants in project committees and presentations given to selected (and small) audiences. 1 The 1 Principally, NRA, open paper session, September 1977 (See Appendix X); American Psychological Association meeting, September 1978 (See Appendix IX and XIV); Council on Social Work Education, March 1979 (See Appendix XI); American Orthopsychiatric Association, April 1979; Functional Limitations Assessment Conference, September 1978; Syracuse Evaluation Conference, May 1978. 63 emphasis has been placed during Phase I and the early part of Phase II on a reactive role in dissemination rather than on a proactive thrust. In preparing for proactive efforts, the project developed "slick" materials meant to create a visual image for RI's: a stylized phoenix was selected as a logo; a symbol of regeneration was judged to be a suitable symbol for the project's efforts to create indicators of rehabilitation. The "RI Update" is an example of a visually appropriate dissemination device: it looks professional and will convey the project's message to a wide audience. Dissemination in Phase III will take two forms: (1) increasing the awareness and understanding of the project within a wide audience and (2) sharing RI materials with a selected and smaller audience of demonstration settings and independent researchers. Training Consultant, Alice Randolph, has pointed out that needs of users and potential users of RI's for RI information varies -- from simply being aware of the project and its major goals, to understanding the RI concept, to being able to integrate, practice, evaluate and adopt RI's. Thus, the relationship the person has to RI use (from none to deciding whether to contact the project for more information to deciding to adopt RI's for usage) will largely determine the nature of RI materials that should be disseminated. A second determining factor that Randolph has highlighted is that of the language of the target audiences: researchers and service providers use different jargon and respond to different selling points; our materials must take this into account. Specific activities to implement the dissemination strategy are described in pp. 50-57 Fourth, the utilization strategy for Phase III has been defined to address objectives of increasing the credibility and utility of RI's and increasing the momentum of RI adoption within field settings. Utility of RI's will be enhanced through establishing and analyzing several demon- strations incorporating varying usage models; experiences in using RI's within the demonstrations will be fed back into RI and usage model refinement. Additionally, evidence relevant to demonstrations will be disseminated to specific targetted audiences to enhance awareness and know- ledge of RI utility. A second thrust of such RI and usage model refinement is to improve the statistical and technical merits of RI's (e.g., improving the reliability of data collection, decreasing the amount of time needed to implement RI's with clients, etc.) in order to increase the credibility and acceptability of the RI tool relevant to a wide target audience. Momentum, we believe, will build through establishing a variety of suitable and well- planned usage models in demonstration and independent research sites; eval- uation reports relevant to such use will be disseminated to targetted sub- groups, through presentations, publications, workshops and consultation. A final aspect of the utilization strategy for Phase III is to include in the evaluation of demonstrations, activities to determine (1) the resources needed within settings to support specific usage models and (2) the elements in settings (and without) that are needed for maintaining RI usage. These data will help in determining maintenance costs for a variety of RI usage models: a crucial element in decision-making for potential uses. 64 E., F. Implementation and Commitments This aspect of Phase III activities is discussed in PP. , and Also see Appendix XVIII for correspondence referring to potential sites of demonstration and other uses of RI's. G. Indexed Abstract of Proposal Accountability, Counseling, Rehabilitation Processes, Research, Planning, Information; Indicators, Behavior, Environment; Independent Living, Vocational Rehabilitation; Severely Disabled, Disability, Needs. The purpose of this project is to develop and demonstrate rehabil- itation indicators (RI's), a generic language of rehabilitation which can be used to obtain and organize large amounts of information focusing on client functioning. RI's can be used to account for outcomes of rehabil- itation and access to services; they can be used to operationalize defi- nitions of "disability" and "needs"; they also can be used to help define client strengths and limitations, goals, needs and outcomes within a context of rehabilitation planning. RI's are descriptors of aspects of the client's functioning, including statuses, activities, skills and environmental elements. RI's include vocational/education, independent living, social, political/legal and economic content at several levels of detail. RI's are being developed for use within most rehabilitation settings and with clients of many disability groups: sensory, psychiatric, deve- lopmental and physical. This proposal covers the third phase of project development and will demonstrate RI's and usage models. 65 7. COST-BENEFIT MEASURES A. Target Groups and Size The primary target population of this project's product consists of all disabled persons encountering rehabilitation services during the time period RI's are used within target rehabilitation systems. All disabled persons with sensory, psychiatric, physical or developmental/educational impairment could benefit if served within rehabilitation settings using RI's. Two groups of disabled persons are not specifically targeted, but could benefit from use: the culturally disadvantaged and ex-offenders. The following types of settings and service systems are targeted: State-Federal Vocational Rehabilitation agencies, medical rehabilitation facilities, psychiatric hospitals, mental health centers, vocational eval- uation and training programs, independent living programs, etc.. Direct service providers, administrators, planners/evaluators, and funding agents relevant to these types of settings are the secondary target populations. Estimating the proportion of the primary and secondary target popu- lation which would benefit if project objectives were fully met is a simple task. In that we have no reason to believe that utilizers will not benefit, we would suggest that 100% of those receiving services and 100% of those using RI data would benefit, when RI's are used within appropriate usage models. To estimate the size of the populations which will benefit is, of course, much more difficult. Nagi 1 estimates (from a survey conducted in 1971-1972) that the target population for State-Federal VR services is constituted of approximately 5,000,000 persons "limited in work roles and activities" and 7,000,000 who are "vocationally disabled"; Nagi based these estimates on four indices of inability or difficulty in performing work, housekeeping or school work, because of "disability." The Urban Institute 2 has adopted the SSA's Survey of Disabled Adults' estimate of more than 23,000,000 disabled persons in the U.S. These two estimates of the total number of persons who might benefit from State-Federal VR services or, in the latter estimate, from any rehabilitation services received constitute the pool from which our target population is drawn. However, we have no estimates available for the number of individuals actually receiving reha- bilitation services among the total target groups during any one year. Thus, we have no basis for estimating the size of the actual primary target group. Also, we have made no attempt to estimate numbers of service providers, administrators, etc., who work in the type of rehabilitation settings listed above, the secondary target group. 1 Nagi, S. Estimates of Target Population for State Federal Rehabilitation Programs, Unpublished paper, July 10, 1974, P. 3-4. 2 Urban Institute, Comprehensive Needs Study, 1975, p. 72. 66 B. Expected Benefits Two approaches are offered in describing expected benefits to the target populations: (1) The individual and non-personal benefits, listed in section 4010.25 of the R & D Guidelines, that are likely to occur with full use of RI's are listed first. Since these terms are not defined in the Guidelines and the meaning of some are not clear, we have not priori- tized the benefits. (2) The project principals, as part of developing the project framework, have specified the expected payoffs for each target group. These expected benefits are described in this Cost-Benefit Section (see Table 4). 1. RSA Benefit Terms: The following terms from Section 4010.25 of R & D Guidelines describe possible individual direct benefits from use of RI's: Quality of service delivery; coping behavior; counselling, education and training; containment of personal cost; adaptive behavior; client- initiative; expanded potential for benefit from services; client awareness and expectation of service; consumer participation; under- standing rights and obligations; and service containment. The following terms describe possible non-personal direct benefits from use of RI's: Legislative impact; program improvement tactics; improved evaluation of programs; service process refinement; improvement of provider's efficiency and effectiveness; cost effectiveness and benefit/cost; improved information systems; improved productivity of tax expen- ditures; validation of benefits; more effective planning processes; expanded R & D potential; improved data quality; and improved and more flexible administration. 2. Project-Defined Payoffs from Use of Rehabilitation Indicators: Use of rehabilitation indicators will provide payoffs to resource providers (clients and funding sources) and to service pro- viders (counselors, physicians, planners, etc.); the nature of the payoffs is a function of the usage model into which RI's are placed. Some of the potential payoffs outlined below will be empirically tested during Phase III. The results will help determine final development of training programs, using model guidelines and the final utilization plan. a. Resource Providers. The clarified language of rehabili- tation indicators within appropriate usage models will make possible the following enhancements for rehabilitation resource providers (clients and funding sources): 1) Clients: a) Reasons for not gaining access to rehabili- tation services should be more clearly stated to applicants refused services; the rationale could 67 be detailed in terms of status, activity pattern, skill, and environmental relationships. b) The logical relationships among rehabilitation variables should be more clearly and directly shared with the client through use of RI's; in other words, the means-end chain could be explicated: the rationale for specific services being chosen, to address identified skill and environmental needs which, if alleviated, could enable specific goals to be reached. The client's clear understanding of the rationale for the services being offered should speed up the rehabilitation process. c) The client's role as an equal participant in rehabilitation plan development and implementation should be enhanced. With the focus of rehabili- tation planning placed on factors and events that the client understands, e.g., "walking," "visiting with friends," "being employed in a workshop," and with avoidance of jargon which can hinder mutuality in planning, the client can understand actual and projected levels of functioning and can see progress as clearly as the rehabilitation professional: the client knows where he/she "is" in the rehabilitation process at any point in time. d) Rehabilitation planning should improve and goals and sub-goals of rehabilitation should be attained more quickly, when the need for specific rehabili- tation services is based on identification of client instrumental needs; the service plan would be based on identification of the environmental factors and skills that need to be the targets of rehabilitation efforts, if primary goals are to be reached. e) Client satisfaction and understanding also should be increased when the locus of needs is explicitly specified, whether client-centered/behavioral or external/environmental. f) Rehabilitation goals should become more syntonic with the client's capabilities, interests and needs, leading to increased satisfaction. g) The multi-dimensional content of RI's should broaden the target areas of rehabilitation efforts: a wider primary goal range can be validated by the resource provider and a wider range of instrumental skills and environmental factors can be targeted. In the past, too narrow a focus in goal selection and particularly in need identification has hindered the attainment and sustention of rehabilitation success and have prevented clients from maximizing their potential within formal rehabilitation programs. 68 h) The client's role as an evaluator should be enhanced in that the information necessary to judge the service provider's use of resources is improved. i) Whenever direct service providers have access to RI's, duplicated services and other information-based errors should decrease. 2) Funding Sources: a) In that the benefits and payoffs of rehabili- tation can be more clearly, specifically, and broadly defined, cost/effectiveness evaluation can be uti- lized more rationally in funding decisions. b) Funding sources can define priority of access to rehabilitation systems in terms of functional disa- bility levels of clients, a more meaningful measure of severity than "diagnosis" or "number of services used." Evaluation of actual access to the system would be possible through use of RI's. c) Improved research regarding access, process, and outcome, using RI's as a basic tool, will give funding sources improved information relevant to the their decisions about these variables. d) Funding sources will have in R.I's a language to define multi-dimensional success, in that the lan- guage of RI's provides additional observable out- comes which are key factors in expanding the client's quality of life. e) The four types of RI's provide a powerful tool to define "disability" and "needs" of disabled people. Needs would be defined multi-dimensionally, with two primary foci, the environment and client skills. This approach to defining need will provide objective data that can be used to enhance resource allocation decisions. b. Service Providers. With use of RI's in appropriate usage models, the following enhancements are probable for direct service providers and service planners, respectively: 1) Direct Service Providers: This group includes reha- bilitation counselors, physical therapists, psychologists, physicians, social workers, etc.. The main function of direct service providers vis a vis clients is to coor- dinate and/or directly provide rehabilitation services. 69 a) Developing the written rehabilitation plan should be an easier, more systematic process; the content that would be included in the plan would be found in the lexicon of RI's. b) Record keeping could become simplified in that rehabilitation efforts would be more precisely focussed through RI's used in appropriate usage models. c) Expanding the categories of outcomes and foci (environmental and behavioral) that can be dealt with in rehabilitation, should increase the direct service provider's satisfaction, in that clients can be worked with more nearly as 'wholes,' rather than as undimensional 'parts.' d) The set of RI's that are incorporated into the client's goals and sub-goals provides a useful tracking device, to better follow the client's progress, by focusing on the change within critical behaviors and on progress made in modifying or adapting to external barriers. This allows better feedback into goal setting, which can be a cyclic process. 2) Service Planners: This group includes those who plan and evaluate resource allocation, training, staffing, service development, etc. a) All planning processes can be improved through implementation and use of basic input/process/out- come research that helps clarify relationships among these rehabilitation client and service variables. RI's provide an excellent tool for this purpose. b) Evaluators within rehabilitation settings (in- house evaluators) will have better information, both in client records and within special data collection devices, to perform better formative and summative evaluation. c) The language of RI's should assist in the training of service providers, its being a directed, outcome-oriented language understandable to a broad range of providers. REHABILITATION REHABILITATION REHABILITATION ACCESS PROCESS OUTCOMES Rationale for access Rationale for plan development Goals and client strengths More participation, avoidance more syntonic of jargon Expanded goal range Services more focussed and CLIENT direct Problem locus is clear: behavioral vs. environmental Client as evaluator Avoidance of duplicated services Priority in access can be Better research will rationa- Better defined outcomes stated in functional lize access, process and improve evaluation of FUNDING terms outcome expectations services SOURCE Resource allocation improved through better "need" definition DIRECT Plan development a more satis- Expanded outcomes allow SERVICE fying process working with client as a PROVIDER Simplified record keeping 'whole' Tracking of client progress SERVICE Planning processes improved through basic research PLANNERS Better evaluation information Training programs become more outcome-oriented TABLE 4 Expected Benefits to Rehabilitation Participants with RI's In Appropriate Usage Models 70 71 8. BACKGROUND A. Project Staff/Committee Organization Chart Advisory Utilization Environmental Committee Committee Task Force Co-Directors Wilbert Fordyce, Durand Jacobs Leonard Diller Research Project Consultants: Supervisor Coordinator Computer, Training, etc. (W. Gordon) (M. Brown) (Lucido, Randolph, etc.) Field Data Coordinator Coordinator (TBH) (J. Farber) Field Project Data Assistant Assistant Analyst Secretary (TBH) (A. Fabian) (G. Buccheri) (B. Harris) Data Data Coder Assistant (TBH) (TBH) Advisory Relationship Supervisory Relationship 72 B. Staff Qualifications 1. Leonard Diller, Ph.D., Co-director Dr. Diller has been actively involved in rehabilitation psychology for nearly 30 years as a researcher, clinician, educator and consultant, and has served as chairman and member of numerous professional organizations, some of which are described below. Dr. Diller is presently Chief of Behavioral Science Research at the Institute of Rehabilitation Medicine, and Professor of Clinical Rehabilitation Medicine at New York University Medical Center. Formerly he served as Staff Associate for the Association for the Aid of Crippled Children (1963-1964) and Chief Psychologist and Assistant Chief of Psychiatric Services at New York University Medical Center, Institute of Rehabilitation Medicine (1951-63). He has served as research consultant for several organizations including United Cerebral Palsy, New York City (since 1961) and is a member of their Professional Advisory Committee (since 1967); he is also a Member of the Professional Advisory Committee of the New York Chapter of the March of Dimes. Other con- sultantships and memberships include Human Resources Corporation (1957-60), Association of Rehabilitation Centers (1960-1961), Psychology Advisory Committee of the Social and Rehabilitation Service Administration (1968-1970), and the spinal cord research program, RSA (1975- ). Dr. Diller has held office in several professional organizations: President, Division 22 of the American Psychological Association (1964-65); Chairman (1962-63), Research Awards Committee, American Personnel Guidance Association; Board of Governors' of International Neuropsychology Society (1975- ); and Executive Board of the New York State Psychological Association (1970- ). Dr. Diller's publications and presentations in the field number nearly 200. Those most relevant to the issues to which this project is addressed include: Diller, L. Evaluation of the physically handicapped and psychological assess- ment of the brain damaged. Georgia Psychol. Assn., Atlanta, March 1957. Diller, L. Research in Trehabilitation. In D. Martin (ed.) Whither diagnosis: evaluation of the atypical. University of Colorado, 1959. Diller, L. Prognostic strategies in rehabilitation. American Psychological Association Convention, Cincinnati, September 1959. Diller, L. Psychology and rehabilitation. Conference of Rehabilitation Centers, California, 1960. Diller, L. Olient-Counselor relationships to counseling in rehabilitation process. In Jacobs, Jordan, and DiMichael (eds.) Bureau of Publishers, Teacher's college, Columbia, 1961. Diller, L. Pre-vocational unit in a rehabilitation center. Institute of Physical Medicine and Rehabilitation Monograph, New York, 1961. 73 Diller, L. Hemiplegia. In Garret, J., and Levine, E. (eds.), Psychological practices with disabled. Columbia University Press, 1962. Diller, L., The psychology of activities of daily living in stroke. AMA Stroke Conference, Chicago, 1964. Diller, L., Rehabilitation and behavior psychology. Division 22 Bulletin, American Psychological Association, 1965. Diller, L., The psychopathology of activities of daily living. N.Y. Society of Clinical Physical Medicine and Rehabilitation, New York City, January, 1966. Diller, L. Ben Yishay,Y. and Haas, A. Development of objective psychometric predictors of recovery rates and duration of rehabilitation in hemiplegic patients. Congress of Physical Medicine, Montreal, August, 1968. Diller, L., Ben Yishay, Y. and Gerstman, L. Prediction of rehabilitation outcomes from psychometric parameters in left hemiplegia. Journal of Consulting Clinical Psychology, 1970, 34, 436-441. Diller, L., Ben Yishay, Y., Weinberg, J., Goodkin, R., Gerstman, L., Gordon, W., Mandelberg, I., Shulman,D and Shah, N. Studies in cognition and rehab- ilitation in hemiplegia. Final Report, SRS, RD-2666-P. July 1971. Diller, L., & Goodkin, R. Reliability among physical therapists in diagnosis and treatment of gait deviations in hemiplegics. Perceptual & Motor Skills, 1973. Dembo, T., Diller, L., Gordon, W., Sherr, R., & Leviton, G. A view of rehabilitation psychology. American Psychologist, August, 1973. Diller, L., Powell, R., & Grynbaum B. A follow-up study in hemiplegia. J. of Genetic Psychology Monog., 1976 Gordon, W., Freidenbergs, I., Diller, L., Hibbard, M., Rothman, L., Wolf, C. and Ezrachi, 0. Assessment of psychosocial problems of cancer patients. American Psychological Association Convention, San Francisco, 1977. Freidenbergs, I., Gordon, W., Diller, L., Hibbard, M., Rothman, L., Wolf, C. and Ezrachi, O. Problem-oriented record in psychosocial assessment/ intervention with cancer patients. American Psychological Association Convention, San Francisco, 1977. Diller, L., Gordon, W., Freidenbergs, I., Hibbard, M., Rothman, L., Wolf, C. and Ezrachi, 0. The relationship between rehabilitation goal, ADL status and psychosocial problems in cancer patients. American Congress of Rehabilitation Medicine, Florida, 1977. Diller, L., and Gitler, D., Evaluation and management implications of cognitive, attentive, behavioral and functional deficits in children. American Congress of Rehabilitation Medicine, Florida, 1977. Diller, L. & Gordon, W., RI's: A home for ADL. American Psychological Association, Toronto, August 1978. Gordon, W., Friedenbergs, I., Diller, L., et al, The Psychosocial problems of cancer patients. American Psychological Association, Toronto, 1978. 74 Diller, L., Rehabilitation indicators as a system for accountability. Conference on Functional Limitations Assessment, Alexandria, Va., September 1978. 2. Wilbert Fordyce, Ph.D., Co-director. Dr. Fordyce has been a prominent figure in the field of rehabilitation psychology for many years: as professor, researcher and clinician. Since 1970 Dr. Fordyce has been Professor of Clinical Psychology in the Department of Physical Medicine and Rehabilitation, University of Washington School of Medicine, Seattle, and previously was Associate Professor (1964-70) and Assistant Professor (1959-64). He has served as member and officer in numerous organizations and committees and has served on several editorial boards. These include the American Rehabilitation Foundation (Vocational Psychologist Committee, 1963-70; Chairman 1967-70), the Association of Rehabilitation Centers (Long-range Planning Committee, 1961; Research Committee, 1963-64; Education Committee, 1967-68, Board of Directors, 1967-68), the American Congress of Rehabilitation Medicine (Professional Development Committee, 1967-72; Vice President, 1973-77), and International Association of Rehabilitation Facilities (Executive Board, 1969-72). Dr. Fordyce has been active in several divisions of the American Psychological Association (12, 18, 22,25,38) and has served as a member on the Council of Representatives (1970-1972), as President of Division 22, Rehabilitation Psychology (1973-1974), as Chairman, Section on Health Care Research (Division 18), 1976-1978; and on the Fellows Committee of Division 38 (1978-1979). Dr. Fordyce has served on the editorial boards of the Archives of Rehab- ilitation Medicine (1969- ), and the Journal of Program Evaluation (1972- ). From Dr. Fordyce's numerous publications we have selected those which reflect his interest and commitment to the issues addressed in this project. These include: Parsons, J.R., Fordyce, W.E., Thorne, J., & Gronewald, D.H. Studies of public assistance referrals to vocational rehabilitation: I. Administrative effectiveness. II. Predicting vocational rehabilitation outcomes. Report, Office of Vocational Rehabilitation, School of Social Work, University of Washington, 1961. Fordyce, W.E. Assessment and management. In Handbook of physical medicine and rehabilitation. Philadelphia: F.H. Kinsen, F.J. Kottke, P. Ellwood, W.E. Saunders Co., 1965. pp. 137-164 Fordyce, W.E. On behavior theory applications in a medical rehabilitation context. Bulletin, Division 22, APA (July), 1967. Fordyce, W.E. Psychology and rehabilitation. In Rehabilitation and medicine. New Haven, Conn.; S. Licht; published by Elizabeth Licht, 1968. Fordyce, W.E. Behavior control systems to increase socialization behavior in the elderly. Bulletin, Division 22, APA (March), 1969, 50, 11-16. Sand, P.L., Fordyce, W.E., Treischmann, R.B., and Fowler, R.S. Behavior modification in the medical rehabilitation setting: Rationale and some applications. Journal of Rehabilitation Research and Practice Review, 1970, 1, 11-24. 75 Fordyce, W.E., Fowler, R.S., Sand, P.L., Treischmann, R.B. Behavior systems analyzed, Journal of Rehabilitation, 1971, 37, 29-33. Fordyce, W.E. Behavioral method in rehabilitation. In Neff, W.S. (ed.), Rehabilitation psychology, Washington, D.C.: APA, 1972, 74-109. Bonica, J., Fordyce, W. Operant conditioning for chronic pain. In Bonica, J., Procacci, P., and Pagni, C.A. (eds.), Recent advances on pain pathophysiol- ogy and clinical aspects. Springfield: Charles C. Thomas, 1974, p. 295. Fordyce, W.E. Chronic pain as learned behavior. Bonica, J.J. (ed.) Advances in neurology series, Vol. 4., New York: Raven Press, 1974, pp. 415-422. Fordyce, W.E. Behavioral science and rehabilitation. Rehabilitation Psychology, 1974, 21, 82-85. Fordyce, W.E. Research on influencing level of patient participation in the rehabilitation process. In Fifrer, M.J. (ed.), Selected research topics in spinal cord injury rehabilitation. Houston, Texas, 1975, 55-69. Fordyce, W.E. Behavioral methods in chronic pain and illness. St. Louis: C.V. Mosby Company, 1976. Fordyce, W.E. A behavioral perspective of rehabilitation. In Albrecht, (ed.), The sociology of physical disability, Pittsburgh: University of Pittsburgh Press, 1976. Fordyce, W.E., Brena, S.F., Holcomb, R.J., De Lateur, B.J., and Loeser, J.D. Relationship of patient semantic pain descriptions to physican diagnostic judgements, activity level measures and MMPI. Pain, 1978, 5, 293-303. Fordyce, W.E. and Brockway, J.A.: Pain and its management. New York: McGraw-Hill, In Press, 1978. Fordyce, W.E. Environmental factors in the genesis of low back pain. Advances in pain research and therapy, Vol. 3. In Bonica, J.J., Liebeskind, J.C., and Albe-Fessard, B. (eds.), New York: Raven Press, In Press, 1978. Fordyce, W.E. Behavioral methods in the rehabilitation process. In Eisenberg, M.G., and Falconer (eds.). Treatment of the spinal cord injured: An interdisciplinary perspective. Charles C. Thomas, Springfield, IL: Charles C. Thomas, 1979. 3. Durand F. Jacobs, Ph.D., Co-director Dr. Jacobs is Chief of the Psychology Service of the Veterans Administration Hospital, Loma Linda, California; he is also lecturer at the University of California, Riverside. Until 1978 he was Chief of Psychology at the V.A. Hospital in Cleveland and Associate in Psychology at Case Western Reserve University (1965- ) and Adjunct Professor, Psychological Clinic, Kent State University (1968- ). Dr. Jacobs' professional activities have included participation in several aspects of the American Psychological Association: 1) Division 22--President (1976); 2) Chairman, Standards Committee (1966- ); 3) Chairman, Legislative Committee (1972- ); 4) Member, Task Force on Specialty Criteria; and 5) Member, Health 76 Care Committee. He also has participated in other organizations, such as Task Force on Standards for Service Facilities, Chairman (1971-75); Northeast Ohio Rehabilitation Association, President (1969-70); Ohio Rehabilitation Association, Board of Trustees (1973-74); Advisory Board of the Bureau of Vocational Rehabilitation, Region II Ohio (1962-74); and Advisory Board of the Vocational Guidance & Rehabilitation Programs, Cleveland (1967-73). Dr. Jacobs has been consulting editor to the Journal of Counseling Psychology (1962-75), the Journal of Rehabilitation Psychology (1970- ), and the Journal of Drug Issues (1972- ). Dr. Jacobs was also (1976) Trustee, Ohio Academy for Education & Research in Professional Psychology and APA representative to the White House Conference for Handicapped Individuals. Dr. Jacobs' publications and presentations relevant to project issues include: Jacobs, D.F. (ed.) Rehabilitation of the emotionally and mentally disabled veteran: Workshop proceedings. Division of Vocational Rehabilitation, Indiana, 1955. Jacobs, D.F. and Trollinger, A.B. A hospital-community team approach to vocational rehabilitation. V.A. Program Guide, 1956 G-8, M-2,Pt. X, 28-30. Isaacson, L.E. and Jacobs, D.F. An inter-agency multi-discipline approach to rehabilitation. Journal of Counseling Psychology, 1958, Vol. 5, No. 4, 300-304. Jacobs, D.F. Vocational rehabilitation of the psychiatric patient: a hospital-community problem. Personnel and Guidance Journal, 1960, 38, 642-647. Reprinted: Hope for the mentally handicapped, Employment Security Exchange, Govt. Printing Office, 1960, No. 17, 13-15. Jacobs, D.F. Motivation to work. Toledo: U. of Toledo Press, 1963. Jacobs, D.F. Rehabilitation indicators symposium. American Psychological Associations Convention, Toronto, August 1978. 4. John R. Barry, Ph.D., Chairman, Field Testing Task Force: Member, Steering Committee. Dr. Barry has accrued a broad and extensive range of professional experience and accomplishments over the last 30 years. Only those which particularly reflect his interest in the issues and methods related to this project are described herein. Since 1966 Dr. Barry had been Professor of Psychology at the University of Georgia (Athens) and Consultant for Research to the State of Georgia Dvision of Vocational Rehabilitation. Since 1968 he has been Coordinator of Graduate Education in Psychology at the University of Georgia. Prior to this appointment Dr. Barry was Director of the Regional Rehabilitation Research Institute and Professor of Psychology at the University of Florida (1962-66). Dr. Barry has been a member and officer of numerous professional psychology and rehabilitation organizations, including the American Psychological Association (Division of Consulting Psychologists: President (1964-65), Research Awards Committee (1967- ), Executive Committee (1973-76); Division of Rehabilitation Psychology, President, 1972-73; APA Council of Representatives, 1966-69, 71), 77 American Association for the Advancement of Sciences (Fellow), National Rehabilitation Counseling Association (Professional Member), and the American Personnel and Guidance Association (Association for Measurement and Evaluation in Guidence, and ARCA--Professional member, and Chairman of Interest Group on Aged.) Dr. Barry is Consulting Editor for the Journal of Gerontology (1977- ), Journal of Rehabilitation (1978- ) and the Journal Supplement Abstract Service Catalog of Selected Documents in Psychology (APA) (1977- ). Previously he acted as consulting editor to the Georgia Rehabilitation Bulletin (1967-74), the Rehabilitation Counseling Bulletin (1962-67), and the Journal of Criminal Justice and Behavior. Some of Dr. Barry's present consultantships are to the Human Interaction Research Institute (since 1966; Member, Board of Directors since 1975) and the Veterans Administration (1963- ). Other professional activities include participation as APA representative at the Regional Planning Meeting for the White House Conference on Handicapped Individuals (Atlanta, 1976) and as APA representative at the 15th Annual Conference of the U.S. National Commission for UNESCO entitled "Environmental Education, the Last Measure of Man" (1971). Over the last 25 years Dr. Barry has had published and has presented numerous papers; those that relate to issues, purposes and methods of this project include: Barry, J.R. Research design in rehabilitation, basic and applied. Annual Meeting of the American Personnel and Guidance Association, Minneapolis, 1965. Barry, J.R. Rehabilitative approaches. In I.A. Berg and L.A. Pennington (eds.). An introduction to clinical psychology. New York: Ronald Press, 1966, 685-713. Barry, J.R. Dissemination and utilization of rehabilitation research information. National Conference of Joint Liaison Committee, Miami Beach, 1966. Barry, J.R., & Fulkerson, S.C. Chronicity and prediction of duration and outcome of hospitalization from capacity measures. Psychiatric Quarterly, 1966, 40, 104-121. Barry, J.R. Predicting results of vocational counseling. Annual Meeting of American Psychological Association, Washington, D.C. 1967. Barry, J.R. Research utilization and œerations research in state rehabilitation agencies. Regional Conference on Research Utilization and Dissemination, Atlanta, 1968. Barry, J.R. Non-standard data utilization in the rehabilitation setting. Conference on Planning and Program Development as it Relates to Rehabilitation Data Management, Atlanta, December, 1969. Barry, J.R. Rehabilitation and data management. Conference on Planning and Program Development as it Relates to Rehabilitation Data Management, Atlanta, 1970. Barry, J.R. Behavioral classification of the physically disabled. Report to the APA Task Force on Behavioral Classification. Psychological Aspects of Disability, 1971, 18, 136-142. 78 Barry, J.R. The physically disabled. In D. Spiegel and P. Keith-Spiegel (eds.), Outsiders, USA, San Francisco: Rinehart, 1973, 99-115. Barry, J.R. Program evaluation in vocational rehabilitation agencies. Fall Conference on VR Region IV Research, Warm Springs, Georgia, 1974. Barry, J.R. Program evaluation and accountability. Symposium at Annual Meeting of American Psychological Association, Chicago, 1975. Barry, J.R. The costs of mental health, institutionalization VS. independence. Georgia Conference on Aging, Atlanta, May 1976. Barry, J.R. Symposium on program evaluation: Positive and negative aspects. American Psychological Association Convention, Washington, 1976. Brown, M., Diller, L., Fordyce, W, Jacobs, D., Barry, J.R., Gordon, W., & Mayer, J. Accountability: Definitions, problems, and the response of Rehabilitation Indicators. Annual Meeting of National Rehabilitation Association, Washington, 1977. Barry, J.R. Barriers in the rehabilitation of SSI and SSDI referrals. Training Staff Conference, Georgia Division of Vocational Rehabilitation, Athens, December 1977. Barry, J.R. Counselor and program evaluation methods in vocational rehabilitation, HEW Region IV Training Conference, Orlando, Florida, January 1977. Barry, J.R. Use of reports for monitoring in the State-Federal vocational rehabilitation program. New directions in program evaluation. San Francisco: Jossey-Bass, 1978, No. 3, 37-44. Bozarth, J. and Barry, J.R. Impact of selected psychosocial research on rehabilitation services. In Annual Rev. Rehab., 1, New York: Springer, 1979 (in press). 5. Margaret Brown, Project Coordinator Ms. Brown's major experiences prior to becoming Coordinator of the RI Project in 1974 has been in health program analysis and project development, as well as in research and teaching. In 1973-74 she was Project Analyst for the Mid-America Comprehensive Health Planning Agency, Kansas City, Missouri, being responsible for project analysis relevant to health services, manpower and research funding applications and for liaison with the agency's review committees. In 1972-73 Ms. Brown served as Coordinator for Project Development for the Kansas Regional Medical Program, formulating procedures, policies and guidelines relevant to the development and review of project proposals. Previously, as a program evaluator with KRMP (1969-72), she was responsible for the management of several project evaluations. While at the University of Kansas (1965-68), Ms. Brown participated in research studies as a U.S. Public Health Service Trainee under the supervision of Beatrice Wright, Franklin Shontz, Gerald Siegel and Roger Barker. Ms. Brown received an M.A. with honors in Social Psychology from the University of Kansas and is presently a Ph.D. candidate in the Community Psychology program at New York University. 79 In the past few years she has served on Advisory panels., for several projects and research efforts: Functional Limitations State of the Art Review, Indices, Inc.; (Select Panel) Taxonomy and Nomenclature Task Force, RR&T Centers National Association; Feasibility Study for Evaluation Methodologies for Cost-Benefit Analyses of Restoration Services in Rehabilitation, Rehab Group, Inc.; and Weight- ing Case Closures, Arkansas RR&T Center. Relevant presentations include: Brown, M., Diller, L., Fordyce, W., Jacobs, D., Barry, J., Gordon, W., & Mayer, J. Accountability: Definitions, problems and the response of rehabilitation indicators. National Rehabilitation Association meeting, Washington, D.C., September 1977. Brown, M., Diller, L., Fordyce, W. and Jacobs, D. Rehabilitation indicators: An overview of the RI Project. Program Evaluation for Rehabilitation Agency Personnel Conference, Syracuse University, May 1978. Brown, M., Caplan, J. and Swirsky, J. Rehabilitation indicators: An overview. American Psychological Association, Toronto, August 1978. Brown, M. Rehabilitation indicators: A method for enhancing rehabilitation services. American Psychological Association, Toronto, August 1978. Gordon, W., Brown, M. & Sherman, B. Evaluating the impact of perceptual remediation. International Neuropsychology Society, New York, February 1979. Brown, M. The use of indicators to study the rehabilitation process. Council on Social Work Education, Boston, March 1979. 6. Wayne Gordon, Ph.D., Research Supervisor Dr. Gordon is Assistant Clinical Professor of Rehabilitation Medicine and Supervisor of Research in Behavioral Sciences at the New York University Medical Center, Institute of Rehabilitation Medicine. As such he is responsible for development of research programs, including the conceptualization of research problems, experimental designs, and designs for data analysis. As a rehabilit- ation methodologist, Dr. Gordon integrates the tennets of experimental design with concepts of rehabilitation and realities of clinical research to develop evaluation techniques suitable for rehabilitation programs. As staff consultant to this project, Dr. Gordon has participated in Task Force, Co-director and other project meetings, where he advises the project on methodologic and analytic issues; he will assist the Coordinator in supervising ongoing data analysis and in planning field operations. In addition to his role as project manager to this and other projects in the Behavioral Sciences, Dr. Gordon is a member of an in-house research review committee at the Institute which reviews all proposals from all departments for purposes of peer review and quality control. Dr. Gordon is a frequent consultant and reviewer: consultant to the National Exercise & Heart Disease project (1972-73) sponsored by the Social and Rehabilitation Service and to the Brooklyn V.A. Hospital; grant reviewer for the Epidemiology Study Section of the National Heart-Lung Institute, the Behavioral Medicine Study Section of NIH and the Special Section on Psychological Precursors to Cancer, and reviewer for the Journal of Behavioral Medicine and Archives of P M and R. Also, he presently chairs the Liaison Committee of Division 22 of APA. Dr. Gordon has contributed many public- ations and presentations relevant to rehabilitation and educational psychology; 80 those which relate to project issues include: Diller, L., Ben-Yishay, Y., Weinberg, J., Goodkin, R., Gerstman, L.J., Gordon, W., Mandelberg, I., Schulman, P. and Shah, N. Studies in cognition and rehabil- itation in hemiplegia. Final Report, SRS, RD-2666-P, July 1971. Reprinted as Rehabilitation Monograph #50, 1974. Gordon, W. Public relations and rehabilitation: The patient as a consumer. Second Symposium on Public Relations and Rehabilitation, Athens, Greece, September 1972. Gordon, W., Gertler, M., Diller, L., Leetma, H. & Gerstman, L. Behavioral correlates of coronary proneness. Eastern Psychological Association, May 1973. Dembo, T., Diller, L., Gordon, W., Sherr, R. and Leviton, G. A view of rehabil- itation psychology. American Psychologist, 1973, 28, 719-722. Gordon, W., Gertler, M., Diller, L., Leetma, H. and Gerstman, L. Behavioral correlates of the coronary profile. J. of Clinical Psychology, 1974, 343-347. Gordon, W., Freidenbergs, I., Diller, L., Hibbard, M., Rothman, L., Wolf, C. and Ezrachi, O. Assessmant of psychosocial problems of cancer patients. American Psychological Association, San Francisco, 1977. Freidenbergs, I., Gordon, W., Diller, L., Hibbard, M., Wolf, C. and Ezrachi, O. Problem-oriented record in psychosocial assessment/intervention with cancer patients. American Psychological Association, San Francisco, 1977. Diller, L., Gordon, W., Freidenbergs, I., Hibbard, M., Rothman, L., Wolf, C., and Ezrachi, O. The relationship between rehabilitation goal, ADL status and psychosocial problems in cancer patients. American Congress of Rehabilitation Medicine, Florida, 1977. Athelstan, G., Dexter, N., Gordon, W., Harasymiw, S., Mayclin, D. and Thompson, D. Psychosocial-vocational research project. American Spinal Injury Association Convention, April, 1978. Gordon, W., Freidenbergs, I., Diller, L., Hibbard, M., Rothman, L., Wolf, C., Lipkins, R., Ezrachi, O. and Francis A. The psychosocial problems of cancer patients. American Psychological Association, Toronto, 1978. Diller, L., and Gordon, W. Rehabilitation indicators: A home for ADL. American Psychological Association, Toronto, 1978. Diller, L., Gordon, W., Freidenbergs, I. Psychosocial factors in the rehabilit- ation of people with cancer. Cleveland Cancer Center, December 1978. Gordon, W., Brown, M. and Sherman, B. Evaluating the impact of perceptual remediation. A case study. International Neuropsychology Society, February 1979. 81 7. Joan Farber, Data Coordinator Ms. Farber expects to complete all Ph.D. requirements in June 1979, in Social Psychology, City University of New York. Her experiences include appointment as Instructor in Psychology Hunter College and serving as consul- tant in evaluation research to the Board of Education, New York City. She has gained experience in rehabilitation and health issues in research assist- antships with David Glass and Irwin Katz. Relevant publications include: Katz, I., Glass, D.C., Lucido, D.J. and Farber, J. Ambivalence, guilt and the denigration of a physically handicapped victim. J. Personality, 1977, 45, 419-429. Katz, I., Farber, J., Glass, D., Lucido, D. and Emswiller, T. When courtesy offends: Effects of positive and negative behavior by the physically disabled on altruism and anger in normals. J. Personality, 1978, 46. Katz, I., Ludido, D., Farber, J. & Glass, D. Ambivalence and amplification of response to the physically handicapped. Manuscript submitted for public- ation. 8. Gino Buccheri, Data Analyst Mr. Buccheri is presently completing requirements for a Ph.D. in Social Psychology at the City University of New York. His experiences include serving as consultant in program evaluation to the New York City Board of Education, being assistant to the Chief Psychologist at St. Francis Hospital, Roslyn, New York, and conducting independent research regarding varying perspectives of disability. He has gained a working knowledge of SPSS and MLIN and extensive experience in computer use for data analysis. 9. Abbe Fabian, Project Assistant Ms. Fabian was graduated in 1977 from Connecticut College with a B.A. in Psychology; she was elected to Phi Beta Kappa and graduated summa cum laude. As an undergraduate she participated in faculty research and conducted her own research project as part of an honors thesis. Prior to being hired by the RI Project, she worked at Rockefeller University in the Department of Immunology. 10. David Lucido, Programming and Data Analysis Consultant Mr. Lucido is presently completing requirements in the Social Psychology Ph.D. program at the City University of New York. He has obtained much experience in programming and data- analysis in several positions at CUNY: Consultant to the Physician Payment Project at the CUNY Research Foundation; Graduate Fellow, serving as computer consultant to faculty and graduate students; Instructor of Computer Statistical Software; and Research Assistant to Leonard Kogan and Irwin Katz. (For relevant publications, see Farber, above.) 82 C. Each of the Co-directors and other key project members are affiliated with and have access to a variety of rehabilitation institutions and organizations throughout the country (these have been highlighted in the preceding biographical sketches). Associations of project principals with rehabilitation networks provide potential sites for demonstration and channels for dissemination of RI's. In addition, Task Force and Committee members represent many professional and consumer organizations and institutions. (See Table 5 , p.83, for a complete list of all project participants and their affiliations). Another contributing factor in this project's potential success is its being located at the Institute of Rehabilitation Medicine (RT Center 1), New York University Medical Center. This location provides access to 1) consult- ants and specialists in rehabilitation medicine, psychology, homemaking, occup- ational therapy, physical therapy, vocational rehabilitation, bio-engineering, architectural re-structuring, research methodology and data analysis; 2) computer terminals and programing/key punch; 3) medical and university libraries; and 4) other resources in the metropolitan New York area (e.g., ICD Resource Center, National Paraplegia Association) including a wide variety of rehabilitation programs. D. NOT APPLICABLE 83 TABLE 5 PARTICIPANTS IN PROJECT COMMITTEES 1 1. STEERING COMMITTEE Leonard Diller, Ph.D. Chief, Behavioral Science Dept. Co-Director Institute of Rehabilitation Medicine New York University Medical Center New York Wilbert Fordyce, Ph.D. Professor of Clinical Psychology Co-Director Dept. of Physical Medicine & Rehabilitation University of Washington School of Medicine Seattle, Washington Durand Jacobs, Ph.D. Chief, Psychology Service Co-Director Veterans Administration Hospital Loma Linda, California John Barry, Ph.D. Professor of Psychology University of Georgia Athens, Georgia 2 2. ADVISORY COMMITTEE John Cobun, Ph.D. Asst. State Superintendent in (representing CSAVR) Vocational Rehabilitation DVR, Baltimore Anne Crumpton Project Director Services for the Blind, Knoxville Anthony DeSimone Director, Office of Rehabilitation (resigned) Services DHEW, Region II New York Fred Fay, Ph.D. Asst. Director of Research & Training (resigned) Tufts-New England Medical Center Boston Fred Francis Director, Division of Policy, Evaluation & Development OVR, Albany, New York Lex Frieden Houston, Texas Pamela Gunnell, Ph.D. Coordinator of Research & Evaluation Wyandot Mental Health Center Kansas City, Kansas 1. Participants include project staff. 2. Participants include the Steering Committee, Chairman of the ADL Task Force, RSA Project Office (N. Ed Acree) and project staff. 84 Douglas Inkster, Ed.D. Director, New York Infirmary Center for Independent Living New York Adriano Marinelli Chief of Program Planning & Evaluation New Jersey Office of VR Trenton Marion Martin Asst. Commissioner of VR (resigned) New York State Office of VR Albany Esther Montanez Asst. Director (resigned) Fountain House, Inc. New York Essie Morgan Chief, Socio-Economic Rehabilitation & Staff Development Dept. of Medicine & Surgery Veterans Administration Washington, D.C. Louis Nau, Ph.D. Assistant Director, OVR Springfield, Illinois John Nelson Tufts-New England Medical Center Boston Thomas Porter, Ph.D. Professor of Special Education & Rehabilitation Memphis State University Memphis Maxine Prescott Director, Mentally Retarded Adolescent Delinquency Project Piscataway, New Jersey Robert L. Robinson Consultant American Foundation for the Blind New York Stanley Sadofsky Research & Development Specialist Rehabilitation Services Administration Region II New York Denise Sherer Center for Independent Living Berkeley, California Douglas Watson, Ph.D. Director of Service Research Deafness Research & Training Center N.Y.U. School of Education New York 85 3 3. UTILIZATION ADVISORY COMMITTEE Gerben DeJong Tufts-New England Medical Center Boston Stefan Harasymiw, Ph.D. Rehabilitation Institute of Chicago Chicago John Muthard, Ph.D. Professor of Rehabilitation Counseling University of Florida Gainesville Alice Randolph, Ph.D. Kent State University Ohio Kenneth Reagles, Ph.D. Associate Professor of Rehabilitation Syracuse University Syracuse, New York Robert Struthers, Ph.D. OVR, Lansing, Michigan Roland Sturm OVR, New York, New York Richard Walls, Ph.D. Associate Professor of Educational Psychology West Virginia University Morgantown 4. ADL TASK FORCE⁴ R. Rembert Aranda Director of Research (resigned) Center for Independent Living New York Paul Corcoran, M.D. Tufts-New England Medical Center Boston Lenore Daniels Dept. of Speech & Hearing Tufts-New England Medical Center Boston Therese Fitzpatrick Dept. of Physical Medicine & Rehabilitation Tufts-New England Medical Center Carl Granger, M.D. Pawtucket Memorial Hospital Chairman Pawtucket, R.I. 3. Participants include Steering Committee, ADL Task Force Chairman, RSA Project officer, project staff, and the following members of the Advisory Committee: Cobun, Francis, Marinelli and Sadofsky. 4. Meetings attended by Co-director L. Diller and project staff; this Task Force is no longer functioning. 86 Glen Gresham, M.D. Tufts-New England Medical Center Boston Arnold Gross Graduate School for Advanced Studies in Social Welfare Brandeis University Waltham, Massachusetts Lauro Halstead, M.D. Texas Institute for Rehabilitation & Research Houston Ellen Jones (Resigned) Center for Community Health & Medical Care Harvard University School of Public Health Boston Sidney Katz, M.D. Michigan State University East Lansing Robert A. Keith, Ph.D. Director of Research Casa Colina Hospital for Rehabilitation Medicine Pomona, California Maude Malick Director of Occupational Therapy Harmarville Rehabilitation Center Pennsylvania Cairbre McCann, M.D. Director, Rehabilitation Medicine Rhode Island Hospital Providence Barbara McNitt, Ph.D. Center for Community Health & Medical Care Harvard University Boston John Melvin, M.D. The Medical College of Wisconsin Curative Workshop of Milwaukee Milwaukee Harold Remmes Project Director, Advocacy Project Massachusetts Counsil of Organizations of the Handicapped Boston Herbert Schoening, M.D. Director, Rehabilitation Medicine St. Mary's Hospital Minneapolis 87 Clarence Sherwood, Ph.D. John Jay College of Criminal Justice City University of New York, and Project Consultant to Fall River Housing Authority (FRHA) Fall River, Massachusetts Sylvia Sherwood, Ph.D. Director of Social Gerontological Research Hebrew Rehabilitation Center for Aged Rosindale, Massachusetts 5 5. ENVIRONMENTAL TASK FORCE Lee Meyerson, Ph.D. Professor of Psychology Arizona State University Tempe William Moldt New Jersey Dept. of VR Trenton Charles Reeder, Ph.D. Director, Institute on Attitudinal, Legal and Leisure Barriers George Washington University Washington, D.C. Marilyn Saviola Dept. of Rehabilitation Counseling Goldwater Hospital New York Angela Thompson President, Disabled in Action New York 6. 6 FIELD TESTING TASK FORCE John Barry, Ph.D. Professor of Psychology & Chairman Coordinator of Graduate Education in Psychology University of Georgia Athens John Muthard, Ph.D. Professor of Rehabilitation Counseling University of Florida Gainesville Kenneth Reagles, Ph.D. Associate Professor of Rehabilitation Syracuse University Syracuse, New York Richard Walls, Ph.D. Associate Professor of Educational Psychology University of West Virginia Morgantown 5. Meetings chaired by Co-director L. Diller; attended by project staff 6. This Task Force has been integrated into the Utilization Committee. 88 7 7. SOCIAL TASK FORCE Howard Kaplan, Ph.D. Professor of Psychiatry Baylor College of Medicine Houston, Texas Edwin Willems, Ph.D. Associate Professor of Rehabilitation University of Houston Houston, Texas 8. VOCATIONAL TASK FORCE I⁸ Jim Bertram Executive Director Skills, Inc. Moline, Illinois Monique Bruns CCDPA Western District Office Chicago Stanley Crow VEWAA Research Director Washington, D.C. Richard Erickson Director of Vocational Rehabilitation Unit Institute of PM & R Peoria, Illinois Robert Granzeier Division of Vocational Rehabilitation Springfield, Illinois Michael Haswell Raleigh, N. Carolina Edward Hester, Ph.D. Goodwill Rehabilitation Center Chairman (Resigned) Chicago Robert Lee Goodwill Industries of San Antonio San Antonio, Texas Alex Levis, D.Sc. Systems Control, Inc. Palo Alto, California Fred McFarlane, Ph.D. Assoc. Professor of Rehabilitation Cslg. San Diego State University Rehabilitation Center San Diego William Rabucha HRS Vocational Rehabilitation Tallahassee, Florida John Roberts Goodwill Industries of Toledo, Inc. Toledo, Ohio 7. Meetings also attended by Co-director Wilbert Fordyce and project staff; this task force is no longer functioning. 8. This task force was constituted by Dr. Hester with sub-groups meeting three times prior to Dr. Hester's resignation as Chairman. This task force is no longer functioning. 89 Charles Robinson Rehabilitation Director Vocational Development Center Manchester, New Hampshire Arnold Sax Materials Development Center Department of Rehabilitation & Manpower Services University of Wisconsin-Stout Menomonie, Wisconsin Harold Taylor Division of Vocational Rehabilitation Mt. Prospect, Illinois 9 9. VOCATIONAL TASK FORCE II Gary Athelstan, Ph.D. Professor of Rehabilitation Counseling Vocational Rehabilitation Unit University of Minnesota Minneapolis Arthur Bradley, Ph.D. Veterans Administration Hospital Minneapolis Rene Dawis, Ph.D. Professor of Counseling Psychology University of Minnesota Minneapolis Fred McFarlane, Ph.D. Associate Professor of Rehabilitation Counseling San Diego State University Rehabilitation Center Duane Sermon Director of Research State of Minnesota DVR St. Paul 9. Replaced Vocational Task Force I in February 1976. Meetings chaired by Co-director Durand Jacobs; also attended by project staff. This task force is no longer functioning. 90 E. 1. Staff Commitments: Current employees include Brown, Gordon, Farber, Fabian, Buccheri and Harris. Current consultants include Lucido and Randolph. To be hired during the current project Phase (i.e., May 1979) is the Field Coordinator. This staff person will be responsible for liaison between the Project and all demonstration and satellite users: he/she will assist in setting up and monitoring demonstrations and will be a member of the dissemination consulting team. He/she will be responsible for development and implementation of training programs, in conjunction with the training consultant. The person is expected to have several years' experience in providing rehabilitation services as well as experience in educational materials development. To be hired three months into the first year of Phase III is a Project Assistant to assist the Field Coordinator in implementing training programs, in monitoring data collection, and in providing feedback to settings. To be hired at the start of the second year of Phase III is a Project Assistant who will assist the Data Coordinator and Data Analyst. It is projected that data feedback to the Project will increase rapidly by the second year, generating a need for greater capability in data analysis. Both Project Assistants will be B.A. level people with suitable rehabilitation and research experience. E.2. Other and Prior Approaches The approach of this project is unique in that what we are developing is a multi-dimensional, multi-faceted language of descriptors that is conceptually compatible with serving multiple purposes within diverse models of usage. Other researchers (see pp. 92-95) have developed less flexible tools, focussing on only some aspects of functioning (e.g., "competencies," not tied to other functioning variables) or on single purposes (e.g., improved outcome measures). Some approaches to assessment are also based on observable elements of functioning and are quite comprehensive (e.g., Crumpton, 1975; SKILS, 1978), but are not intended for use in many types of rehabilitation settings and with diverse groups of disabled persons. Other approaches often form a patchwork of data demands that can be awkwardly placed on a rehabilitation setting or system; none we have found provide an integrated approach where data gathering is incorporated into the planning of client services and only then is used for extrinsic accountability, evaluation purposes. RI's avoid the jargon that resides in some other approaches to rehabilitation assessment and RI's provide for flexible use; the development of demonstrated usage models is seen as crucial to RI product development. Other assessment tools that provide more detailed functioning information have been developed (e.g., SKIL, 1979); such tools that focus on observable client elements are often compatible with RI's, simply defining more levels of detail. RI's provide a "medium level" of detail: useful in individualized planning, in tracking progress and in program management--an approach that ties together client behavior, skills and environmental assessment. 91, F. Potential Users In Appendix XVIII, copies of correspondence between the Project and potential users is provided. Plans to involve these settings and individuals in Project activities are discussed in pp. 50-57 G. Implications for Legislation RI's provide better means for multi-dimensional outcome measurement. Such potential could lead to the development of sophisticated evaluation paradigms being applied in settings for severely disabled people: providing better inform- ation to resource providers (e.g., Congress) as to benefits accruing to disabled clients of independent living centers and other similar settings. Also, environmental indicators should provide detailed information relevant to environmental elements that hinder, or prevent or assist client goal attain- ment. These data could provide the ammunition for stronger legislation relevant to environmental supports and barriers. 92 9. REVIEW OF APPROPRIATE LITERATURE A. Introduction A review of the literature can serve many purposes, including providing a history of the research of others from which the focal research is derived, comparison and differentiation of other approaches relevant to the focal research, and review of research results directly utilized in the focal re- search. Our discussion here will not be lengthy, although the Bibliography of materials reviewed (see Appendix XVII) is quite extensive. This brevity is due to the fact that our approach is basically orthogonal to most others of which we have become aware and is not derived from a history of prior published developments (although recent developments are relevant and are discussed herein). Basically we have reviewed the literature with four purposes in mind: 1. Discovery of descriptors and environmental barriers/supports that other researchers have utilized in describing, assessing or measuring aspects of the client's life, 2. Ensuring that this project's framework accounts for relevant conceptual developments of others (e.g., defining "needs", "outcomes", "disability", etc.), 3. Ensuring that the RI tool and usage model does not duplicate the work of others, and 4. Analyzing related work relevant to outcome measurement. The remainder of this Review will discuss each of these purposes in turn. B. Review of Literature Useful for RI Content Development 1. Self-care/Independent Living To help develop RI's related to self-care, we began by reviewing the major ADL scales (e.g., Donaldson, Wagner & Gresham, 1973; Granger, 1974; Schoening and Iverson, 1968; Katz and Lyerly, 1963) and scales of functional life activities (e.g., Sarno, Sarno, & Levita.., 1973; Scranton, Fogel & Erdman, 1970). Forms and check- lists used in several medical rehabilitation facilities were also reviewed for the purpose of determining the behavioral components of "activities of daily living" that could be translated into skill indicators (e.g., "Household activities chart", Institute of Rehabilitation Medicine; "Physical self-maintenance scale", Philadelphia Geriatric Center, Lawton, 1965). In order to des- cribe skills associated with specific disabilities, literature on the rehabilitation of people with mental retardation, hearing, and speech impairments were consulted (e.g., Gold, 1963; Wolfsenberger, 1967; Porter, 1975; Sarno et al., 1973). "Household activities" were based on a draft provided by Maude Malick, a member of the ADL Task Force. 93 Several adaptive behavior scales and checklists were utilized in the development of indicators in the area of social ADL. These were a) the Camelot Behavioral Checklist (Foster, 1974), b) AAMD Adaptive Behavior Scale (1974) and c) the Adaptive Behavior Checklist (Schwartz & Allen, 1974). All of the materials from which we directly drew ideas for in- dicators are asterisked in the Bibliography. In addition to the ADL Scales and checklists, we reviewed some major developmental efforts of multi-dimensional behavioral description, including the approach of the Knoxville Functional Capacity Areas project (Crumpton, 1975), the Colorado Master Planning Guide, the Nebraska Client Progress System (Hansen, 1974), the work of the Portland Habilitation Center (Thiel, 1975), and SCIL (Hannah, et al., 1977). Each of these are impressive efforts to describe client behavior in self-care, social and vocational terms. Each, however, takes a develop- mental approach where skill descriptions are used as behavioral anchors on scales of and/or curricula for developmental progress and growth. 2. Vocational Assessment The literature in this area is abundant. The basic objective of our review in this area was to analyze and then behaviorize constructs such as "work adjustment" and "employability" to help in developing specific, observable and objective skills related to vocational functioning. These included job-seeking and interview skills (Walker, 1969; Lumsden and Shard, 1974), job-related personal-interpersonal skills (MDC Behavioral Identification Format, 1974), career planning skills (Smith, 1959; Willings, 1959; Calhoun, 1946) and job-specific skills (DOT, 1965). Other efforts to make vocational planning more behavioral and goal oriented (Esser, 1972; Houts, Scott and Leaser, 1973) and other multi-dimensional vocational evaluation systems (e.g., Hester Evaluation Systems; Controlled Environmental Laboratory Evaluation) were reviewed as well as vocational scales such as the JVS Employability Scale, San Francisco Vocational Competency Scale (1968) and several scales of work adjustment. All scales and other published resources used in development of RI's are asterisked in the Bibliography. An important recent publication (Walls, et al., 1978) is being reviewed by RI staff to insure our coverage of areas defined by Walls and his coworkers. 3. Social/Leisure Behavior After an extensive review of the literature exploring relationships between rehabilitation variables and social/leisure outcomes, one reference (Chapin, 1974) proved to be particularly useful in develop- ing the content of the activity pattern methodology. Other literature in the area of social behavior took approaches less consistent with the project conceptualization, (e.g. focussed on affect); Chapin's work is aimed at exploring how people use time and space. His activ- ity categories were used as the basis for development of activity categories. listed in Appendices II - IV. 94 It should also be pointed out in this context that the work of Willems and his colleagues at TIRR (cf., Willems et al., 1977) was influential (through Willem's participation in the Social Task Force of this project) on the direction taken by the RI Project in developing activity pattern indicators. C. Relevance of Literature Review to Project Framework Unfortunately most of the literature was not relevant to the develop- ment of the RI project's framework. Briefly outlined below is the research and work of others that has been influential in conceptualizing RI's: 1. Relevant to defining "disability" and "needs", only the chapters by Moriarty and Nagi in Whitten (Ed., 1975) proved useful and consistent with our own approach. 2. Kennedy, Hamilton & Galliers (1972) provides a useful model for program planning, which could be used with RI's as content. 3. Jones' (1974) work on patient classification provided us the concept of "level of detail", which has become integral to RI's. Much of the project's framework was developed by the project staff, interacting with the project's Task Force/Committee structure and informal contact with colleagues. D. Duplication of Others' Work The RI approach (RI's and usage models, within a project framework) overlaps with the work of others but does not duplicate it. Most of the work of others that is most relevant to issues to which the RI approach is responsive addresses only parts of what the RI project has "taken on." Thus, some efforts focus on measuring outcomes in vocational rehabilitation agencies (e.g., Westerheide and Lenhart, 1975; Reagles, Wright and Butler, 1970), some efforts focus on defining (in great detail) client competencies and skills (e.g., Theil, 1975; Crumpton, 1975; Hannah, et al., 1977), some assessment systems are focussed on single types of disability. None of the approaches we've encountered have taken the RI approach: - A basic, flexible tool. - To serve multiple purposes: - Outcome measurement - Assisting in client plan development - Defining disability functionally - Etc. - Focussing on several, conceptually integrated aspects of functioning: - Statuses - Activity patterns - Skills - Environment 95 - Applicable in multiple types, of rehabilitation agencies - State-Federal VR - Private facilities - Independent living - Useful with many disability groups - Orthopedic and other physical disabilities - Sensory disabilities - Developmental disabilities - Psychiatric disabilities - Where information is focussed through "branched"or "gated" levels of detail. E. Review of the Literature on Prediction of Rehabilitation Outcome (This review was developed as part of project efforts in relation to the client change model, see pp. 16-22 , and is included here because of the relevance of methodological outcome studies to the RI Project efforts.) Several reviews, bibliographies and discussions of the literature on prediction of rehabilitation outcome are available (Rubin and Salley, 1973; Bolton, 1972; Westerheide and Lenhart, 1974; Walls and Tseng, 1976; Grigg, Holtmann and Martin, 1970; IRI Prime Study Group, 1974; Hammond, Wright and Butler, 1968, and Sankovsky, 1968). Based upon Rubin and Salley's (1973) annotated bibliography and some additional references, this review includes those studies that used physically disabled persons as subjects and/or where the study is methodologically interesting in the context of this proposal's client change model. In these studies, predictors include demographic, disability and experiential variables, e.g., age, sex, level of education; psychological measures, e.g., anxiety, self-concept; cognitive measures, e.g., WAIS; environmental variables, e.g., availability of jobs; service variables usually are formulated in terms of employment; occasionally an outcome such as independent living is utilized. Most studies reviewed have used a simple model of one set of variables to predict one set of outcomes. Two exceptions are Barry, Dunteman and Webb (1968) and Arnholter (1962). Both of these studies used a range of predictors (psychological and/or demographic, disability, functional, or service variables) to predict employment outcomes which were viewed as mediated by motivation (Barry et al) or by a decrease on a rigidity measure (Arnholter). No studies were located that postulated a wide range of mediating outcomes (e.g., increased skills, increased mobility) as does the client change model. Most of the studies reviewed use "obtaining employment" as the sole criterion variable (Zuger, 1971; Mesch, 1976; Weisbroth, Esibill, and Zuger, 1971; Burnstein, Soloff, Gillespie, and Haase, 1967; Goss, 1968; Taylor, 1963; MacGuffie, 1970; MacGuffie, Janzen, Samuelson and McPhee, 1969; Tseng, 1972; Salomone, 1972; Tosi and Vesotsky, 1970; Clayton, 1970; DeMann, 1963; McPhee and Magleby, 1960; Miller and Allen, 1966; Gressett, 1969; Schwartz, Denner11, and Lin, 1968; Warren, 1961, and 96 Gilbert and Lester, 1970). Three studies vary from this pattern and must also be noted: Ben-Yishay, Gerstman, Diller, and Hans (1968) used length of stay and functional outcomes as criteria; Novis, Marra and Zadrozny (1960) focussed only on "pre-rehabilitation outcomes"; Bowman and Micek (1973) included congruence between vocational goals and vocational outcomes. Others look at outcomes in addition to "obtaining employment": Neff, Novick and Stern (1968) focussed on percent of time worked; Arnholter (1962) measured change on Rorschach as a mediating outcome; Barry, Duntemann, and Webb (1968) obtained ratings of motivation, potential functioning efficiency and satisfaction; Lorei (1967) assessed number of days not hospitalized; Miller, Kunce and Getsinger (1972) studied employment-related outcomes, such as "job stability"; Greenblum (1977) measured post-rehabilitation earnings; Clark (1973) assessed employment-related outcomes, independent living, and ratings of success; Siegel (1969) included schooling as a rehabilitation outcome category; Nadler (1957) included several measures of work-related functioning, e.g, punctuality; Ayer, Thoreson and Butler (1966) looked at occupation level and upward mobility ratings; Hawryluk (1974) utilized a standardized gain score constituted of hours of work per week, weekly earnings, work status, economic dependency, and psychological well-being; and Olshansky and Beach (1974) focussed also on job stability. With regard to predictor variables, most studies analyze demographic and disability variables. Westerheide and Lenhart (1974) concluded, after reviewing several reviews of demographics as predictors (Sankovsky, 1968; Hammond, Wright and Butler, 1968; Day, Cummings, Anderson, and Iverson, 1969; Grigg, Holtman and Martin, 1970), "demographic data have not been shown to bear any consistent relationship to outcome" (p.13). Some of the studies also use psychosocial and cognitive assessment to predict outcome. For example, Weisbroth, Esibill, and Zuger (1971) found that communication abilities related to employment for right hemi- plegics, while WAIS block design differentiated return and not return to work for left hemiplegics. Warren (1961) found that supervisors' ratings of personality and social characteristics of clients predicted employment. Nadler (1957) found significant correlations between WAIS and Bender-Gestalt and a criterion constituted of the number of jobs the person was capable of, productivity, steadiness of work, punctuality, independence from supervision and work quality. Barry, Duntemann and Webb (1968) found that favorable attitudes toward self, similar real and ideal self images, interest in people and attitudes of social restraint could predict levels of motivation and return to work. Gilbert and Lester (1970) found that WAIS full scale, WAIS performance and MMPI hypochondriasis and depression measures correlated with rehabilitation success. Westerheide and Lenhart (1974) conclude, "The value of psycho- logical tests in predicting rehabilitation success seems limited Psychological factors may play an important role in the client's rehabilitation, but they have proven difficult and time-consuming to define and measure" (pp. 14, 16). 97 Of lesser emphasis have been studies that have included environmental, service and client functioning variables as predictors of outcome. Lorei (1967) found that a client's relatives' attitudes toward mental illness could predict the client's employment and living in the community. McPhee and Magleby (1960) found that a "healthy family relationship' would predict "substantial employment". Mesch (1976) found that employment opportunities and employer cooperation correlated with employment; Clark (1973) found that none of the predictor variables (demographic, psychological, cognitive, etc.) correlated with employment and independent living of mentally retarded subjects, but that availability of jobs in a rural setting accounted for variance. Burstein et al. (1967) found a positive correlation between psychomotor performance measures and discharge employment status. Ben-Yishay, et al (1970) found that client functioning levels predicted (with other variables) self-care and ambulation at termination. Mesch (1976) also suggests that the patient's communication abilities will correlate positively with employ- ment outcome. Weisbroth, Esibill and Zuger (1971) found that ambulation and upper limb functioning correlated with employment. Tseng (1972) and Arnholter (1962) correlated work behavior ratings and vocational outcomes. With regard to service variables, Arnholter (1962) found that group counseling participation did not correlate with criterion variables. Neff, Novick and Stern (1968), however, found that counseling predicted vocational adjustment; Bruell and Simon (1960) found that early entry into physical therapy correlated with recovery among hemiplegics. McPhee and Magleby (1960) found that obtaining more vocational training correlated with their outcome category of "substantial employment". Hawryluk (1974), however, found a negative correlation between rehabili- tation service expenditures and rehabilitation gain. Bowman and Micek (1973) found that three service variables (less vocational training, completing the rehabilitation plan and number of contacts between referral and plan formulation) correlated with congruence between vocational goals and outcomes among 114 "26 closures". In terms of the methodology of outcome studies, one might conclude that none of the work reviewed depicts a complex model of rehabilitation services and client/environment change. Findings are not reproduced consistently and in much of the work, the utility of the findings to service planners and providers is questionable. 98 American Association on Mental Deficiency, Adaptive Behavior Scale for Children and Adults, 1974 Revision. Arnholter, E.G. The validity of Fisher's Maladjustment and Rigidity Scales as an indicator of rehabilitation. Personnel and Guidance Journal, 1962, 40, 634-637. Ayer, M.J., Thoreson, R.W. and Butler, A.J. Predicting rehabilitation success with the MMPI and demographic data. Personnel and Guidance Journal, 1966, 40, 634-637. Barry, J.R., Dunteman, G.H. and Webb, M.W. Personality and motivation in rehabili- tation. Journal of Counseling Psychology, 1968, 15, 237-244. Ben-Yishay, Y., Gerstman, L., Diller, L. and Hans, A. Prediction of rehabilitation outcomes from psychometric parameters in left hemiplegics. Journal of Consulting and Clinical Psychology, 1968, 34, 436-441. Bolton, B. The prediction of rehabilitation outcomes. Journal of Applied Rehabili- tation Counseling, Summer 1972, 3, 16-24. Bowman, J.T. and Micek, L.A. Rehabilitation service components and vocational outcome. Rehabilitation Counseling Bulletin, December 1973, 100-109. Bruell, J.H. and Simon, J.I. Development of objective predictors of recovery in hemiplegic patients. Archives of Physical Medicine and Rehabilitation, 1960, 564-569. Burstein, A., Soloff, A., Gillespie, H. and Haase, M. Prediction of hospital discharge of mental patients by psychomotor performance: partial replication of Brooks and Weaver. Perceptual and Motor Skills, 1967, 24, 127-134. Calhoun, R. P., Moving ahead on your job, New York: McGraw-Hill, 1946. Chapin, F.S., Human activity patterns in the city: Things people do in time and space, New York: Wiley & Sons, 1974. Clark, A.T., No "open sesames" in rural rehabilitation. Rehabilitation Literature, 1973, 34, 207-209. Clayton, W.H. Correlates of client-counselor interaction and rehabilitation outcome. Dissertation Abstracts International, 1970, 31 (4-a), 1572-A. Crumpton, A.D. Functional capacity areas project. Unpublished document, 1975. Day, Cummings, Anderson & Iverson. Client characteristics and their relation to outcome: A review of previous research. Minneapolis, Minnesota: Institute of Interdisciplinary Studies, American Rehabilitation Foundation, Nov. 3, 1969 (unpublished). DeMann, M.M. A predictive study of rehabilitation counseling outcomes. Journal of Counseling Psychology, 1963, 10, 340-343. Dictionary of Occupational Titles (Third Edition). Vols. I & II, 1965. 99 Donaldson, S.W., Wagner, C.C. and Gresham, G.E. A unified ADL evaluation form. Archives of Physical Medicine and Rehabilitation, 54, April 1973. Esser, T.J., Individualized planning for work adjustment services. Menomonie: Materials Development Center, (1972 Supplement). Foster, R.W. Camelot Behavioral Checklist. Parsons, Kansas: Camelot Behav- ioral Systems, 1974. Gilbert, D.H. and Lester, J.T. The relationship of certain personality and demographic variables to success in vocational rehabilitation. Research Report from the Orthopedic Hospital, Los Angeles: 1970. Gold, M.W. Research on the vocational habilitation of the retarded: The present, the future. In Ellis, N.A. International Review of Research in Mental Retardation, 6, New York: Academic Press, 1963. Goss, A. Predicting work success for psychiatric patients with the Kuder Preference Record. Educational and Psychological Measurement, 1968, 29, 571-576. Granger, C.V. A monograph on medical rehabilitation II: Programming care and measuring outcomes: A first year's experience, Tufts-New England Medical Center, Boston, August 1974. Greenblum, J. The effects of vocational rehabilitation on the earnings of disabled persons. HEW Publication No. (SSA) 77-11852, Staff Paper, No. 27, 1977. Gressett, J. Prediction of job success following heart attack. Rehabil- itation Counseling Bulletin, 1969, 13, 10-14. Grigg, C.M., Holtmann, A.G. and Martin, P.Y. Vocational rehabilitation for the disadvantaged. D.C. Heath: Lexington, Massachusetts, 1970. Hammond, C.D., Wright, G.N. and Butler, A.J. Caseload feasibility in an expanded vocational rehabilitation program. Monograph VI, Madison, Wisconsin: University of Wisconsin, RRRI, 1968. Hannah, M.A., Millhouse, J., Sauvageot, A., Froelich, A., Zidar, P.A., Spinks, N.L., and Landau, P.S. SCIL: Systematic curriculum for independent living. Novato, California: Academic Therapy Publications, 1977. Hansen, J.A., Nebraska Client Progress System, Lincoln, Nebraska, 1974. Hawryluk, A. Rehabilitation gain: A new criterion for an old concept. Rehabilitation Literature, 1974, 35, 322-328. Houts, P.S., Scott, S.A., and Leaser, J.P., Goal planning with the mentally retarded. Pennsylvania State University College of Medicine, Department of Behavioral Science, Hershey, 1973. 100 IRI Prime Study Group. Measurement of outcomes, Institute, West Virginia: R & T Center Press, 1974. Jones, E.W., Patient classification for long-term care: Users manual. DHEW publication No. HRA 75-3107, November, 1974. Katz, M.M. and Lyerly, S.B. Methods for measuring adjustment and social behavior in the community: I. Rationale, description, discriminative validity and scale development. Psychological Reports, 1963, 13, 503-535. Kennedy, O.G., Hamilton, B.B. and Galliers, J. A conceptual model for planning the delivery of rehabilitation services, Archives of Physical Medicine & Rehabilitation, October 1972. Lawton, M.P. Physical Self-maintenance scale. Unpublished material. (Available from Behavioral Research Department, Philadelphia Geri- atric Center, Philadelphia). Lorei, T. Prediction of community stay and employment for released psychi- atric patients. Journal of Consulting Psychology, 1967, 31, 349-357. Lumsden, H.H. and Shard, J.C. Behavioral dimensions of the job interview. Journal of College Placement, Spring 1974. MacGuffie, R.A. Relationship between the Social Vocabulary Index and the Interaction Scale and rehabilitation success. Journal of Counseling Psychology, 1970, 17, 289-290. MacGuffie, R.A., Janzen, F.V., Samuelson, C.O. and McPhee, W.N. Self- concept and ideal self in assessing the rehabilitation applicant. Journal of Counseling Psychology, 1969, 16, 157-161. Materials Development Center, MDC Behavior Identification Format. Menomonie: Department of Rehabilitation and Manpower Services, 1974. McPhee, W.M. and Magleby, F.L. Success and failure in vocational rehabil- itation. Personnel and Guidance Journal, 1960, 497-499. Mesch, J.C. Content analysis of verbal communication between spinal cord injured and non-disabled male college students. Archives of Physical Medicine and Rehabilitation, 1976, 57, 25-30. Miller, D.E., Kunce, J.T. and Getsinger, S.H. Prediction of job success for clients with hearing loss. Rehabilitation Counseling Bulletin, 1972, 21-28. Miller, L.A. and Allen, G. The prediction of future outcome among OASI referrals using NMZ scores. Personnel and Guidance Journal, 1966, 45, 349-352. Nadler, E. Prediction of sheltered shop work performance of individuals with severe physical disability. Personnel and Guidance Journal, 1957, 36, 95-98. 101 Neff, W.S., Novick, B. and Stern, B. A follow-up counseling program. Final report, Jewish Occupational Council, New York, 1968. Novis, F., Marra, V., and Zadrozny, L. Quantitative measurement of the initial screening of rehabilitation potential. Personnel and Guidance Journal, 1960, 39, 262-269. Olshansky, S. and Beach, D. Follow-up of clients placed into regular employment. Rehabilitation Literature, 1974, 35, 237-238. Porter, E.B. Guidelines for the diagnosis and remediation of problems of persons with severely impaired hearing. National Association for Hearing & Speech Action, Silver Spring, Maryland, July 1975. Rubin, S.E. and Salley, K. Studies of prediction of rehabilitation outcomes. Annotated bibliography. Arkansas RR & T Center, July 1973. Salomone, P.R. Client motivation and rehabilitation counseling outcome. Rehabilitation Counseling Bulletin, 1972, 11-20. Sankovsky, R. Predicting successful and unsuccessful rehabilitation outcome: A review of the literature. School of Education and Commonwealth of Pennsylvania, Bureau of Vocational Rehabilitation, 4, No 2, December 1968. Sarno, J.E., Sarno, M.T. and Levita, E. The functional life scale. Archives of Physical Medicine and Rehabilitation, 54, May 1973. Schoening, H.A. and Iversen, I.A. numerical scoring of self-care status: A study of the Kenney Self-care Evaluation, Archives of Physical Medicine and Rehabilitation, April, 1968. Schwartz, B.J. and Allen, R.M. Measuring adaptive behavior: The dynamics of a longitudinal approach. American Journal of Mental Deficiency, 1974, 79. Schwartz, M., Denner11, R. and Lin, Y. Neuropsychological and psychosocial predictors of employability in epilepsy, Journal of Clinical Psychology, 1968, 24, 174-177. Scranton, J., Fogel, M.L. and Erdman, W.J. Evaluation of functional levels of patients during and following rehabilitation. Archives of Physical Medicine and Rehabilitation, January 1970. Siegel, M.S. The vocational potential of the quadriplegic. Medical Clinics of North America, 1969, 53, 713-718. Smith, L.J. Career planning. New York: Harper & Bros., 1959. Taylor, F. The general aptitude test battery as predictor of vocational readjustment by psychiatric patients. Journal of Clinical Psychology, 1963, 19, 130. 102 Theil, S.A. (ed.) Inventory of habilitation programs for mentally handi- capped adults. Portland Habilitation Center, 1975. Tosi, D.V. and Vesotsky, L.R. Successful rehabilitation as a function of client status. Psychological Reports, 1970, 27, 37-38. Tseng, M.S. Predicting vocational rehabilitation dropouts from psycho- metric attributes and work behaviors. Rehabilitation Counseling Bulletin, 1972, 154-159. Walker, R.A. "Pounce": Learning to take responsibility for one's own employment problems. In Krumboltz, J.D. & Thoreson, C.E., Behavioral counseling, cases and techniques. New York: Holt, Rinehart & Winston, 1969. Walls, R.T. and Tseng, M.S. Measurement of client outcomes in rehabilitation. In Bolton, B. (ed.), Handbook of measurement and evaluation in rehabilitation, Baltimore: University Park Press, 1976, 207-226. Walls, R.T., Zane, T. and Werner, T.J. The Vocational Behavior Checklist. Experimental Edition. West Virginia University, 1978. Warren, G.F. Ratings of employed and unemployed mentally handicapped males on personality and work factors. American Journal of Mental Deficiency, 1961, 65, 629-633. Weisbroth, S., Esibill, N., and Zuger, R.R. Factors in the vocational success of hemiplegic patients. Archives of Physical Medicine and Rehabilitation, 1971, 52, 441-447. Westerheide, W.J. and Lenhart, L. Case difficulty and client change. Monograph I. A review of the literature. Department of Insti- tutions, Social and Rehabilitation Services, Oklahoma City, Oklahoma, 1974. Whitten, E.B. (ed.), Pathology, impairment, functional limitation and disa- bility: Implications for practice, research, program and policy deve- lopment and service delivery. Report of the First Mary E. Switzer Memorial Seminar. Cleveland, May 20-23, 1975. (Available from National Rehabilitation Association, 1522 K St., Washington, D.C.). Willems, E.P., Tanner, M.E., and Crowley, L.R. Coding manual '77. Texas Institute for Rehabilitation and Research, 1977. Willings, J.Z., The strategy of earning a better living. New York: Holt, Rinehart & Winston, 1959. Wolfsenberger, W. Vocational preparation and occupation. In Baumeister, A.A. Mental retardation, appraisal, education and rehabilitation. Chicago: Aldine Publishing Co., 1967. Zuger, R. To place the unplaceable. Journal of Rehabilitation, Nov.-Dec., 1971. 103 10. PROGRESS REPORT A. Changes in Plan All changes in plan have been detailed in prior progress reports (see Appendix VI, pp. 4-7, and Appendix VII, pp. 5-8), except for one change in the plan outlined on p. 22 of Appendix VII. In a discussion of planned activities in the Progress Report for Year 2, it was stated that by the end of Phase II the project would expand its conceptual discussion of "disability," "needs," etc. and develop a plan to operationalize such concepts. Instead these activities will be aimed at producing a modular proposal rather than a plan for action in Phase III (implying core activity). B. Progress Report The last report of progress was written in January 1979 (see Appendix VII). Progress since that date has been discussed in several parts of this proposal. One aspect of progress remains to be described: activities of project staff centering on analysis of RI data. Studies have been conducted in three major areas of concern: a) reliability, b) tool refinement and sampling procedures, and c) validation. 1. Reliability. Test-retest reliability of the weekly inventory (NYU) form of API's was studied; the form was administered twice to a sample of non- disabled adults. Correlation methods were applied to both frequency and duration of occurrence of activities in each of 12 activity cate- gories (e.g., Vocational, Educational, etc.) across the two points of measurement. Analysis of these data indicated that for both frequency and duration, ten of the 12 correlations between the sampled weeks were significant (p < .05). The probability of obtaining this proportion of significant correlations by chance is less than .02. This suggests that activity patterns were consistent in this sample from one "typical" week to the next, providing evidence that the inventory form is reliable over time. 2. Tool Refinement and Sampling. The following study was conducted to serve two purposes: (a) to examine the comparability of two API forms currently in use (weekly inventory (NYU and daily timeline -- see Appendices II and IV, respectively), and (b) to begin to determine the best sampling procedure to use with the timeline for obtaining a two-or three-day record that adequately represents a full week: Seven daily timelines, as well as the two weekly activity inven- tories mentioned above (one of which covered the same week as was sampled using the timeline) were administered to 20 nondisabled adults. 104 Comparability of the two API forms was examined by correlating the summed activities of the seven daily timelines with the inventory form for the same week. The two API forms were significantly cor- related on nine of the 12 activity categories for frequency and on 11 of the 12 for duration (p = .003). Thus, duration more than frequency was highly comparable across the two API forms. The timeline form appears to provide a more complete description of an individual's day, thereby providing a more accurate and reliable view of what transpires. Despite these differences, however, this study of a small sample pro- vides evidence that the inventory and timeline forms are significantly comparable. The timeline data were further examined by making multiple internal comparisons of data subsets: individual days, composites of weekdays, weekend composites and the total week. In these ana- lyses, it was found that: a. For both frequency and duration, the composite of the five weekdays correlated significantly with the sum of all seven days on all 12 categories. The composite of the two weekend days correlated significantly with the total week on 11 of the 12 categories for frequency and on 10 of the 12 categories for duration. While the weekday and weekend composites each cor- related significantly with the total week, they only correlated significantly with each other on four out of 12 frequencies and three out of 12 durations. (Individual weekend days and week- days tended to correlate negatively with one another or not at all.) b. Out of 48 correlations (12 activity categories X 4 other days) of each of the five weekdays with every other, the maximum number found to be significant for any one day was 29 for fre- quency and 26 for duration. However, the proportion of signif- icant correlations was much greater for comparisons between individual days and the total week, and between individual days and the weekday composite. For frequency, Monday and Tuesday correlated significantly with the total week on all 12 cate- gories, Wednesday and Thursday on 11 out of 12, and Friday on 10 out of 12. For duration, Monday correlated significantly with the total week on all 12 categories; Tuesday, Wednesday and Friday on 11 out of 12. (Thursday correlated significantly with the composite week only 9 out of 12 times). Individual weekdays also correlated well with the weekday composites. For frequency, Monday, Tuesday, Wednesday, and Friday all correlated significantly with the weekday composite on all 12 categories, and Thursday on all but one out of 12. For duration, Monday and Wednesday correlated significantly with the weekday composite on all 12 categories, Tuesday and Friday on 11 out of 12, and Thursday on 10 out of 12. C. Saturday and Sunday correlated significantly only six out of 12 times with each other, and only eight out of 12 and seven out of 12 times respectively with the composite week for frequency. However, Saturday correlated significantly 11 out of 12 times and Sunday ten out of 12 times with: the composite weekend. For duration, Saturday and Sunday were significantly correlated 105 only two out of 12 times, and each was significantly correlated with the composite week only eight out of 12 times. However, Saturday was significantly correlated with the composite weekend ten out of 12 times, Sunday 11 out of 12 times. These findings suggest that weekdays and weekend days are not sufficiently correlated, indicating a need to sample at least one of each in order to obtain an accurate representation of an entire week. Furthermore, timeline days were strongly correlated with the composite week, indicating that sampling a single day to represent all week days is supported by this evidence. Two additional sets of analyses on these data are in progress: 1) the similarity of activity category means, for both frequency and duration, on the two forms will be tested in order to cross-validate the correlation studies; 2) within subject activity pattern consistency, both over time and across API forms, is also being examined in order to clarify the group patterns observed. 3. Validation A number of data analyses, some completed, others in progress, provide information regarding the sensitivity of RI's to differences in client populations, varying along dimensions such as type and severity of disability, type and phase of rehabilitation, and status. Table 1, pp 3-5, summarizes these studies: 1. IRM, Cancer Research Project: An early inventory form of the API's was used in a longitudinal study of the impact of problem-oriented intervention programs on the psychosocial rehabilitation of breast lung, and skin cancer patients. Intervention and Control patients 1 were tested within 48 hours of hospital admission (T1), at hospital discharge (T2), three months post-discharge (T3) and six months post- discharge (T4). The API form (an early version) was used to measure frequency of participation in various social-leisure and family-role activities. At T4, Intervention patients more frequently (p <.05) participated in Household Business Activities away from Home (grocery shopping, bill paying, errands, etc.) than did Control patients. The frequency of participation in Solitary Activities at Home (reading, TV watching, napping) was constant from T1-T4 in the Intervention but, increased significantly (p < .03) in the Control group. There were no activity pattern differences specific to cancer-site. These measures indicate the greater activity of those in the Intervention group, and that the effects of intervention were associated with active patterns of activity. 2. IRM, Psychosocial-vocational Research Project: API data (NYU form, see Appendix II) gathered from 85 spinal cord injured individuals, 1-5 1. "Controls" received regular psychosocial services rather than the special intervention program. 106 years post-injury, were available for analysis. Ten cases (not wheelchair bound) were eliminated from the analysis; it was felt that the difference in mobility status would have skewed the data base, rendering interpretation (at this point) difficult. Thus, the data from 75 SCI individuals were examined in order to determine how API's varied as a function of disability [paraplegic (N = 25) VS. quadri- plegic (N = 75)], vocational status [working (N = 25) VS. not working (N = 75)], sex [male (N = 60) VS. female (N = 15)] and marital status [married (N = 23) VS. single (N = 52)], and duration of disability [years post injury: 1 (N = 12), 2 (N = 20), 3 (N = 16), 4 (N = 16), 5 (N = 11)]. All data were collapsed into 12 activity categories for each individual and then were analyzed using analysis of variance procedures; the Tukey-B procedure was used to test the significance of all post-hoc comparisons. These analyses indicated: a. The categories of API's were sensitive to the effects of disability. This was observed in several ways: a) The para- plegics participated in many more different activities than the quadriplegics (p <.004). b) The greater diversity of activities was also reflected in the area of transportation (p < .02). Thus, the paraplegics appeared to venture out more and use transportation to do more different activities. c) The paraplegics more frequently participated (p < .05) in Household Business activities (shopping, banking, etc.) for longer periods of time (p <.03). The paraplegics also spent more time in Home Maintenance Activities (p < .05). These activities were especially underrepresented in the reports of the C4 quadriplegics (p .001). b. The categories of API's were sensitive to the effects of vocational status. As would be expected workers engaged in more different (p < .001), more frequent (p < .001) and more time (p < .001) in vocational, educational and transportation activities than the non-workers. In contrast, those who were unemployed spent more time engaged in rehabilitation (p < .01) and recreational (p < .001) activities compared to those who were employed. C. The categories of API's were sensitive to gender differences. The data indicated that the women were more active social parti- cipants than the men. This was observed in several ways: a) the greater diversity of recreational activities (p < .01) and communications (letters/phone calls) (p < .04) ; and b) the greater frequency of social activities (p < .05). In addition, the women spent more time (p < .03) in personal care activities than did the men. d. The categories of API's were sensitive to marital status differences. Thus, married people more frequently participated in child-centered activities (p < .001) for longer periods of time (p < .002). 107 e. The categories of API's were sensitive to duration of disability, in that those who were one year post injury engaged in more different rehabilitation activities than those who were three or five years post-injury (p < .05), Following these analyses, the focus of data analysis was switched to individual activities. It was reasoned that even though categories of activities differentiated between groups, use of categories in the analyses would be blunting the sensitivity of API's to group differences. It was hypothesized that individual API's would be the source of dif- ferences and that category means might be similar but the ways in which activities were distributed within a category might differ. The latter situation is analogous to two individuals having similar WAIS full- scale IQ scores, but based on differing patterns of subscale performance. In order to examine the utility of this approach for future analyses, the items in the social, recreational, social interaction, relaxation and housework categories were examined. It was noted in the category analysis that unemployed subjects spent more time in recreational activities than did persons employed. Examination of the specific activities added meaning to this finding: the recreational activities selected were largely passive in character. Specifically, non-workers more frequently watched TV (p < .03) or read (p < .05), for longer periods of time (TV, P < 001 reading p < .007) than did workers. The greater passivity of the non-workers is also noted in their social interactions: they more frequently (p < .07) and for longer time (p < .02) were visited by family members (a more active form of social interaction would be the Ss visiting family) than workers. It was seen in the analysis of activity categories that women were more socially active than men, which is accounted for by their greater participation in such activities as dining out (frequency, p < .05), going to museums (frequency, p L .05; duration, P <. .01), going to the theater (frequency, p 4 .001; duration, P .003), wheeling (duration, p is .03) and interacting when friends visit (frequency, p < .07). Individual API's were much more sensitive to the effects of marital status than were the activity categories. Single people more frequently visited (p < .06) and spent time with friends (p < .02) than those who were married. In contrast, those who were married spent more time attending meetings of clubs and organizations (p (..02). Also, those who were single spent more time listening to the radio (frequency, p < .01; duration, P < .001). These analyses indicate that the API's are sensitive to statuses which act as major channels of behavior. Further analyses are planned during Phase II and III to: (a) explore the external correlates of activity patterns, and (b) explore ways of clustering items so that der- ived "indicators" of such factors as mobility, isolation, etc., emerge. 108 3. IRM, Vocational Department, Summer Work Program. This study derived from an interest of the Vocational Department at IRM in evalu- ating the effects of a summer placement program for young adults and teenagers. Using the NYU form of API's, pre- and post-placement, with an N = 9, no consistent immediate changes in patterns of activity were found. A request for R & T Center funds to continue the evaluation over a longer time span was rejected, and therefore no further activi- ties are planned by the RI project in this evaluation. 4. IRM, Electronic Device Research. A cross-sectional study of quadri- plegics was conducted for the purpose of evaluating the impact of devices on activity patterns and other variables within this population. Preliminary analyses have been completed and are presented in Appendix XX. 5. UCP, PIPP. RI data (API's and Status Indicators) were obtained on over 30 developmentally disabled persons at two points in time: pre- and post-deinstitutionalization, as part of a longitudinal evaluation study of the Post-Institutional Placement Project, sponsored by United Cerebral Palsy of New York. A report of this study is included in Appendix XIII. Overall, the results revealed large, expected pre/post differences, pointing towards increased activity levels, diversity of activity, independence, and mobility after deinstitutionalization. 6. Altro Health and Rehabilitation, Evaluation Research: A. 2 X 2 cross-sectional study of 20 psychiatric clients at entry and at closure was conducted, using either the NYU or timeline API forms. By inspection of the data, it was found that the two API forms did not differ greatly on either frequency or duration within the activity categories and therefore these two cells were collapsed for the analysis of clients at entry and at closure. It was found that: a) clients at closure engaged in rehabilitation activities more often and for longer duration than did clients at entry; and b) clients at closure showed less variance in their responses than did those at entry. It is un- clear whether the latter finding reflects greater similarity in actual activity patterns, less measurement error or both. These findings and a report of field test experiences in this psychiatric setting were the focus of a presentation by Joan Mayer Caplan, a former staff member, and Celia Benney, Research Dierector at Altro, at the April 4, 1979 meeting of the American Orthopsychi- atric Association. 7. University of Washington, Chronic Pain Research: This is a longi- tudinal study of chornic pain patients and their spouses. API's are being used in conjunction with several other measures: the MMPI, acti- vity diaries, an activity checklist, and a health care utilization measure. Data analyses are focussed on describing the API's criterion referrent systems. 109 8. University of Washington, Hemiplegia Research and Other Research: An exploratory study of hemiplegics and their spouses, and a similar study of a heterogeneous sample of disabled patients have been completed. The use of API's in those two studies was descriptive. Expected activity pattern differences among subsamples were found. (See Appendix XVI.) 9. University of Washington, Spinal Cord Injury Research: In another ongoing longitudinal study, medical and functional capacity measures, and API's are being administered to spinal cord injured patients. Correlations among these measures, and the relationship between indi- vidual and functional capacity and changes in activity patterns will be examined. Results are not yet available.