Ask the Scholar

Document scope · 1 page
doc
Scholar
Ask about this object, its catalog metadata, its source description, or the page inventory. For page-specific OCR and visual context, open one of the page chats.

Scholar Source Context

Document identity
localId
351274116
label
"Involving Disabled Consumers in Rehabilitation" [n.d.]
core
doc
dtoType
document
pageCount
1
Source metadata
Source extras
naId
351274116
levelOfDescription
fileUnit
recordType
description
ocrSource
nara-archive
Single page context
seq
1
pageIndex
0
type
document
mediaId
a9d1a5d3b882a0ab
ocrText
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: Papers/Books OA/ID Number: 52118 Folder ID Number: 52118-014 Folder Title: " "Involving Disabled Consumers in Rehabilitation" [n.d.] Stack: Row: Section: Shelf: Position: FiNAl Draft INVOLVING DISABLED CONSUMERS IN REHABILITATION Janet A. Minch, M.A. Project Director LeRoy Spaniol, Ph.D. Evaluation Consultant Core Research Area: Consumer Involvement Tufts-New England Medical Center Research and Tranining Center #7 Boston, Massachusetts Tufts - New England Medical Center RT-7 Project Staff Frederick A. Fay, Director of Research and Training, RT-7 Janet A. Minch, Research Associate Massachusetts Rehabilitation Commission Elmer C. Bartels, Commissioner Peggy Freedman, Project Liaison This project was supported through an Innovation and Expansion Grant, No. , from the Massachusetts Rehabilitation Commission. Health, Education and Welfare Office of Human Development Rehabilitation Services Administration Grant Number 16-P-57856/1-02 ACKNOWLEDGEMENTS The Consumer Involvement Core Area of Research at Tufts-New England Medical Center, Number Seven applied and received funds from the Massachusetts Rehabilitation Commission through its Innovation and Expansion Grant Program. This award was made in December, 1976. Program development began in January, 1977, under the direction of Janet Minch. Several persons were instrumental in the development of program objectives and outcomes. Frederick A. Fay, Director of Research and Training at RT-7, sought and obtained the funds to pi- - lot the demonstration project and has been actively involved since the onset. Commissioner Elmer C. Bartels stimulated program efforts with- - in the rehabilitation agency by displaying a commitment to the concept of consumer involvement. This was evidenced through agency goals sanc- - tioning and prioritizing consumer involvement activities, active parti- - cipation in the development of the project, and establishing and improv- - ing other consumer involvement efforts within the agency in addition to the ones described through this program. The rehabilitation agency pro - ject liaison, Peggy Freedman, has worked diligently from the very begin- ning to coordinate activities and distribute information on program pro - gress with disabled consumers. LeRoy Spaniol, Evaluation Consultant for the program, developed and implemented the evaluation methodology for the program. His outside objectivity, interest in rehabilitation pro- - cesses and expertise in model program evaluation contributed significant- ly to the quality of the research. Many others, most importantly, all the participants: disabled consumers and rehabilitation agency personnel who are meeting together and working together on the model programs deserve the credit for the success of the program. It is only through them that the consumer in- - volvement activities are effective and generating outcomes. The respon- - dents of the evaluation questionnaire helped to provide the significant information contained in this report. Without their participation the evaluation aspect of the program would not have been possible. A special thanks to the peer review team who worked diligently and enthusiastically on several occasions: Ester Littell (Rhode Island), John Nelson (Vermont), Debby Eddy (Connecticut), Frank Bowe (Washington, D.C.) and Lex Frieden (Texas) . To all participants, thanks for showing and demonstrating your in- terest, commitment and energy in developing the Consumer Involvement Project. Janet A. Minch Research Associate Abstract This publication summarizes the contribution of the Consumer Involvement Project during the first nine months of activity, January, 1977, through September, 1977. The major recommendations of the report to the state rehabilita- tion agency in developing consumer involvement are to: FORMALIZE A STRUCTURE FOR CONSUMER INVOLVEMENT Define Agency Consumer Involvement Goals and Objectives Define, Develop and Disseminate Guidelines for Consumer Involvement -- Program Rationale or Philosophy -- Program Expectations or Desired Outcomes - Eligible Participants -- Participant Roles and Responsibilities -- Specific Objectives -- Time Plan Determine an Agency Definition of the Consumers Determine Program Position within the Agency's Broader Goals PROVIDE ADDITIONAL INVOLVEMENT SUPPORT TO CONSUMERS Designate a Key Staff Position to Develop and Coordinate the Implementation of Consumer Involvement Develop Resources (agency materials, budgets, information, etc.) in Understandable Language Adequately Finance the Program (agency and consumer participation) at all Levels Provide for Support Services such as Interpreters, Personal Care Attendants, Accessible Meeting Sites, Accessible Trans- portation, etc. FOSTER GROWTH OF CONSUMER INVOLVEMENT Encourage and Expand Agency Staff Participation in Consumer Involvement Sanction efforts for Staff to Get Involved in Consumer Activities Implement Outcomes of Consumer Involvement Wherever Possible Maintain a High Priority on Consumer Involvement Activity ENCOURAGE TRAINING IN CONSUMER INVOLVEMENT Finance Training Programs in Skills to Improve Consumer Involvement Explore New Training Methods for Outreach and Participation Train Additional Persons (agency and consumers) in Consumer Involvement Skills PUBLICIZE CONSUMER INVOLVEMENT Actively Disseminate Information within the Agency to Consumers and the General Public Identify and Report on Results of Consumer Involvement Implementation of these recommendations would advance and enhance the program as it continues to develop. The success of the first year finding, described in the full detailed report, indicates rapid progress has been made. The recommendations isolate areas of need for further development to continue the success of early development. TABLE OF CONTENTS Acknowledgements Abstract Introduction Program Development Description of Models Statement of Problems Purpose of Study Methodology Results Discussion and Recommendations Bibliography Appendicies INTRODUCTION A. Program Development The Rehabilitation Act of 1973 requires state vocational rehabili- - tation agencies to develop a formal program to "receive and consider the views of recipients of vocational rehabilitation services," 11 and others interested in vocational rehabilitation services. The Massachusetts Re- habilitation Commission awarded an Innovation and Expansion grant to Tufts-New England Medical Center, Research and Training Center to explore the feasibility of several consumer involvement models. The goal of the program is to demonstrate and evaluate several different approaches to consumer involvement in vocational rehabilitation. The rationale for the demonstration program is that given appropriate opportunity and support consumer participation with state rehabilitation agencies will have beneficial outcomes. Some methods of involvement will be easier to achieve than others. Some will produce more visual results than others. Some methods will take a significant amount of time to re- alize a structure and participation and the even greater number of "infor- mal" consumer involvement types of activity presently under way. There is little program documentation and insufficient evaluation that quanti- fies and qualifies consumer involvement activity: Tufts Research and tife Training Center established in 1976 a specialized research area of Con- sumer Involvement. The study purposes of this area aim "to explore the role of 'consumers themselves' as a force in advancing the effectiveness of the rehabilitation system" and "to explore methods of assuring meaning- ful involvement of consumers and representatives of consumer organiza- - tions in the planning, delivery and evaluation of medical, vocational, environmental and independent living rehabilitation services. 11 These are the two major reasons for the involvement of Tufts RT-7 in this research on consumer involvement. To design a program methodology and begin implementation several underlying assumptions were isolated and formulated into the planning process. Five basic assumptions were generated: -- Consumers want to be involved in all phases of the program. -- Consumers have an understanding of what program models will work. -- Consumer based organizations of the physically disabled are under developed. -- Coordiantion with rehabilitation agency personnel is vital to program success. -- Demonstrating various program types at different sites allows for flexibility and comparability. A request for proposal (RFP) was used to advertise the availability of funds to eligible organizations that might be interested in undertaking consumer involvement projects. The program called for providing a reha- bilitation service and suggesting a plan of policy consultation. The purposes and needs of the program were described in general terms in the RFP. Specific requirements were spelled out. Details were given on the 1 Corcoran, Paul J., , M.D. , Medical Rehabilitation Research and Training Center Number Seven, Annual Progress Report, (Boston, Mass. : Tufts-New England Medical Center, 1977), p. 223. criteria for selection to be used in deciding the projects to be chosen. The proposal process sought a basic plan describing what activities would be undertaken, by whom, during a specific time period, how the activities would be implemented and any expected outcomes (products and/or achieve- ments). Eligible organizations were described in the request for proposal. This included organizations composed of, in the majority, of physically disabled individuals. This eligibility was consistent with the philosophy of service generated from the Tufts Rehabilitation Institute and a primary focus of the Research and Training Center, Number Seven. It did not exclude the involvement of other disability representation in project activities (and RT-7 - certainly encourages broad based program representa- tion) as is evident from project documentation. There were eleven orgnizations in Massachusetts that met the eligibility criteria that are to: 1. be a non-profit corporation established under the laws of the Commonwealth of Massachusetts 2. have corporate headquarters and operations in the Commonwealth of Massachusetts 3. include in its organizational purpose (s) primary activity directed toward assisting physically disabled persons 4. be composed, in the majority, of physically disabled persons who are interested and commited to improving the quality of rehabi- - litation services in the Commonwealth of Massachusetts. 5. have the authority and capability to accept funds and enter into contracts 6. be willing to participate in evaluation efforts of the consumer involvement project 7. comply with all assurances and required procedures if selected for funding Most of these organizations have been recently organized, grown sporadically over time, have not been consistently financed, have limited resources and memberships, have difficulties such as lack of available transportation to bring people together or a limited number of consumer leaders interested in organizing efforts. Realizing that the efforts of these groups is solely volunteer for most, a stipend of $75.00 was awarded to any eligible organization that planned and submitted written program proposals. This evidence of support was done to assist individual consumer based organizations organizing efforts within the disabled community. Eight organizations subsequently delivered proposals and thus were paid for contributing program ideas and written plans. The Request for Proposal process had a significant program purpose as well. Through this procedure, disabled consumers were able to plan a program that they believed was workable and manageable. They proposed activities and tasks most appropriate to their needs, skills and desires. They presented policy consultation methods that they per- - ceived would work in conjunction with vocational rehabilitation agency personnel. They generated plans relevant to the geographical premise for which the program was designed (rural and urban). They formulated expectations of the program from their own perspective. They made budget projections for program costs. A wide variety of plans were submitted by the consumer based organizations. A peer review process was utilized to review the proposals and make recommendations to Tufts RT-7 of those proposals most appropriate for funding. This peer group consisted of five disabled persons primarily from neighboring New England states who read over the proposals, filled out the criteria for selection forms and attended a discussion meeting on the proposals. Two persons from Tufts and two persons from the state rehabilitation agency participated in the process as well. The group finalized their participation by recommending to Tufts RT-7 a prioritized list of projects for funding consideration. Peer involvement in the process ensured that programs appropriate to the needs of disabled persons would be recommended. They were able to provide relevant information, suggestions and comments from their expertise and experience. The review form used by the Peer Review Committee consisted of ten areas for judging the proposals. Each of the criteria was weighed, rang- - ing from ten to twenty-five points. The reviewed applied the criteria to the proposal and assigned a graded value from xeox to three points. Multiplying the weighted criteria by the assigned grade produced the score. The total scores were compared. After the Review Committee discussed all the proposals, they then individually thanked them. This priority ranking was then reviewed and compared with original pre-discussion scores. A final prioritized ranking of proposals was finally determined. The criteria for selection highlighted the proposed usefulness of the project, the creativity of the plan, and the evaluation plan. Experience of the applicant in program administration, appropriateness of the budget, and the management capacity of the applicant were some- what highlighted. The review form is contained in the appendix detailing all ten criteria and weighted indicators. From the recommendations of the Peer Review Committee, the top three consumer based organizations were notified of the desire to develop their program proposal. Tufts RT-7 made contract agreements with each individual organization. Formal agreements were established to ensure the administration of the program would be clearly, legally defined. This agreement process was most important because it presented the commitment and obligations of both parties. Assuming that not all con- sumer based organizations had entered into agreements previously, it was anticipated that the contract would establish a basis of learning management skills. Thus, as Tufts RT-7 prepared for a role of grants management, it provided a contractual basis upon which to provide tech- nical assistance and monitoring of contract and program performance. At the same time, as the program developed, a concerted effort was made by Tufts RT-7 not to get too closely involved in how programs developed. This allowed the opportunity to develop the program efforts at the grass roots or field level. It was supportive of the assumption that consumers knew how to develop and implement a program of service delivery and policy consultation with state rehabilitation agency personnel. One important step was taken prior to signing contracts with individual consumer based organizations. Meetings were held with key administrators of the rehabilitation agency from each of the regions where proposed program activities were to take place. A review and discussion was held of the drafted contract. Suggested changes were made when appropriate. This step helped the rehabilitation agency personnel feel more involved prior to implementation. This coordination process was considered a vital component to successful programs. After the onset of the field based demonstration models, the role of Tufts RT-7 focused primarily on grants management, technical assist- ance and evaluation functions. The information that follows explains in detail the evaluation component of the first year activities. B. Consumer Models There are four basic models of consumer involvement being demon- strated within Massachusetts. Three of these models were designed by consumer based organizations then reviewed and amended in cooperation with state rehabilitation agency personnel. Contractual arrangements with Tufts RT-7 allow for field based program development and implemen- tation through the consumer based organizations. The field based models provide at least one supportive rehabilitation service to state rehabili- tation agency personnel. The fourth model developed and implemented through Tufts RT-7 focuses solely on policy consultation around issues of statewide significance. STAVROS FOUNDATION In the model demonstrated in the most western region of the state rehabilitation agency, the Stavros Foundation provides peer counseling to clients referred by the state agency. This service is carried out on a one-to-one counseling basis and is usually provided in the community setting in which the client resides. Typical problem solving areas focus on issues such as appropriate housing locations, dealing with loneliness, acquiring appropriate equipment, transportation or participation in com- munity based activities. On the policy consultation model, Stavros personnel acted as consul- tants to the rehabilitation regional office and five area offices to assist in the organizing of local advisory councils composed of disabled consumers. The councils meet once a month and Stavros personnel act as facilitators to assist in interaction of disabled consumers and rehabilitation agency personnel. The size of the councils vary from three consumer participants to thirteen participants. The following types of disabilities are repre- sented in the policy consultation process: alcoholics, arthritis, para- - plegic, multiple sclerosis, quadraplegic, scoliosis of the spine, cervical spine fracture. Usually one or two local agency personnel attend. The issues discussed vary at the local area but most have discussed the follow- ing topics: counselor caseload, regional and local budgets, costs relat- ed to developing consumer involvement activities. The advisory nature of consultation focuses on matters of adminis- tration and service delivery within the agency. Consumer participants are not paid for their participation. So far, interpreter services have been arranged through local rehabilitation offices, but this problem, as well as transportation availability and expenses, has been a continuing concern raised by agency personnel and disabled consumers in maintaining the program. The Stavros Foundation is established as a non-profit organization governed by a Board of Directors. The Board hires an Executive Director who manages the daily programs. The Executive Director does not have the aughority to enter into contractural agreements on behalf of the organization. In this model, the Chairman of the Board is an active participant as the key person to develop and implement the policy consul- tation program. WORCESTER AREA TRANSITIONAL HOUSING A demonstration model organized within the central region of the state rehabilitation agency is provided through the consumer based Worcester Area Transitional Housing, Inc. (WATH). Services of this model include a monthly newsletter entitled "The Rehab-Consumer Link" with articles focusing on the rehabilitation process, resource information for disabled persons, local and statewide issues and events, human interest stories, accessible sites, job opportunities, etc. The newsletter has a distribution of 2,000 including clients of the central rehabilitation agency area, local consumer based organizations and self-help groups, and rehabilitation agency personnel. In addition, WATH assisted the state rehabilitation agency program evaluation office by implementing a group process for a client satisfaction study. This study is a federal requirement of the state rehabilitation agency. Various methods are being explored by the program evaluation unit of the rehabili- tation agency including this one with disabled consumer participation to improve the outcomes of studies. The methodology undertaken was done in cooperation with a local area rehabilitation office. The office mailed out letters and a questionnaire to clients who were closed cases during the previous year. These clients were invited through the letter signed by a disabled person to attend a group meeting to discuss the questionnaire. This process was demonstrated on two occasions. Policy consultation activities undertaken by WATH and the regional rehabilitation agency focuses on the development and implementation of local area advisory board councils. There are five area offices within the central region of the rehabilitation agency. Through a phase-in approach to organizing local boards some areas have begun monthly meet- ings while other areas are in the planning stage. Together, the disabled consumer and the local rehabilitation agency personnel prepare lists of possible consumers to participate. Together a final list of approximately five individuals are identified and recruited. The council members are paid fifteen dollars for each monthly session that lasts about two hours. This payment covers all travel expenses and participation time. The committees have chosen co-chairpersons (one disabled consumer and one agency person) to coordinate and lead the group. Various disabilities are represented on the local boards including stroke, paraplegia, deaf- ness, quadraplegia. The focus of activity and tasks of the boards has service oriented community involvement. A local state supported school currently serving several rehabilitation agency clients is the focus of the board's advo- cacy to stimulate the removal of architectural or physical barriers to better serve disabled persons. Other issues such as transportation, availability of accessible parking spaces, and accessibility of higher education facilities have been discussed at the advisory board meetings. The organizational structure of Worcester Area Transitional Housing is that of a typical non-profit organization. It has a Board of Directors that hires an Executive Director to manage the daily opera- tions. The Executive Director is able to enter into contractual arrange- - ments and is responsible for all phases of program and fiscal operations. INTER-CAMPUS COMMITTEE FOR HANDICAPPED STUDENTS A statewide information center is the service component of a demonstration model provided through a consumer based group called the Inter-Campus Committee for Handicapped Students. This self-help organi- zation elects a Chairperson and a Secretary-Treasurer from among its membership. The Chairperson entered into the contract for the group and chose to manage day-to-day business. One key staff person was hired to develop and implement the service component. The primary service objective is to provide resource information and contacts to assist post-secondary disabled individuals who are clients of rehabilitation services in independent living. This service center is located in the central adminis- trative office of the state rehabilitation agency. Throughout regular business hours, inquiries are received, researched and followed up. Aimed at providing timely assistance and appropriate information the model program encourages self-advocacy in clients and better service through agency counselors. Information available through the office focuses on a wide variety of important areas such as accessibility on college campuses, financial aid for disabled students, housing, counsel- ling resources, and career development. A policy consultation team composed of four representatives of Inter-Campus Committee for Handicapped Students developed a model plan to interface with state rehabilitation administrative agency personnel on policy issues of importance to post-secondary disabled individuals who are vocational rehabilitation clients. A survey instrument was developed and distributed as one means of assessment of issues and concerns among this constituency. Three major issue areas were identi- fied by the ICCHS team for further research: 1) issues related to client/counselor relationships, 2) issues related to counselor training, and 3) issues of general administration. A team of five participants, each representing a different position within the state administrative office of the agency such as a deputy commissioner, a severe disabilities unit supervisory, a program evalua- tion department representative, a training office and a field counselor were designated as part of the team. Group interaction was difficult at the onset and common objectives or mutual concerns were not clarified. Each group posed themselves as "how can we help you" but neither were able to really understand and accept each other and thus work together in a cooperative effort. Future meetings were sporadic and did not overcome orginial difficulties. TUFTS-NEW ENGLAND MEDICAL CENTER The Tufts Research and Training Center, Number 7 undertook the final model developed called Individual Policy Consultation. A process and methodology was established to recruit interested and qualified disabled applicants or representatives of disabled persons concerned with vocational rehabilitation policies and administration in Massachusetts. A pool of 87 applicants were registered. These individuals were sought through disabled consumer groups throughout the state and from rehabili- tation agency personnel. A process was concurrently developed by the state rehabilitation agency to request a "consumer consultant" from the registered pool available. Several memorandums of explanation were mailed to rehabilitation agency personnel to inform and describe through examples suggested use of "consumer consultants." The utilization of these consultants has been minimal. The central administrative office has most actively sought involvement of consultants on developing agency objectives, reviewing innovation and expansion grant proposals, inter- viewing for new staff and reviewing draft policies on equal opportunity employment for handicapped individuals. Field based use through local area offices was negligible. The work was task oriented with written products required or participation in meetings in fulfillment of con- sultation activity. STATEMENT OF PROBLEM There is very little documented research on consumer involvement in rehabilitation. It is generally considered valuable to encourage consumer involvement in the planning and delivery of services to clients. Yet, there is limited information describing approaches to consumer in- volvement or the outcomes/benefits of such involvement to the agency and to the consumer. With the assumption that involving consumers will ultimately improve the quality of rehabilitation services, the Rehabili- tation Act of 1973 required in Section 101 (a) 18 that state agencies must: "take into account, in connection with matters of general policy the views of individuals and groups thereof who are recipients of vocational rehabili- - tation services working in the field of rehabilitation services 11 The Chapter 25 regulations developed by the Rehabilitation Services Administration, suggest methods for the development of policy consultation. Chapter 25 isolates a number of areas where views and recommendations of individuals are helpful: -- program evaluation -- program planning and development -- legislative proposals and budgets -- assessment of physical accessibility -- assistance in studies and surveys -- proposing research -- interpretation of agency policies and program services -- inservice training and staff development -- White House Conference activities -- securing and utilizing local community resources -- implementation of Rehabilitation Act amendments -- establishment of centers for independent living Few states appear to have implemented consumer involvement as extensively explained in the law. 2 One problem is the lact of research proven methodologies pertaining to the involvement of disabled persons and their constituencies. In addition, very little research exists which dociments and explains the benefits resulting from consumer parti- cipation in state vocational rehabilitation agencies. Technical assist- ance is necessary to familiarize persons with options and the support necessary to facilitate meaningful involvement. 2 This is substantiated from raw data collected for a study entitled "State of the Art of Consumer Involvement in Vocational Rehabilitation: A Nationwide Study" presently underway at the Medical Research and Training Center, Number Seven (Boston, Massachusetts) under the direction of this Project Director. PURPOSE OF THE STUDY The purpose of the study is to determine the comparative feasibi- lity of four methods of involving consumers in the rehabilitation process. Through an Innovation and Expansion grant from the Massachusetts Rehabili- tation Commission, Tufts Research and Training Center #7 has undertaken a program of evolving and evaluating model programs that involve persons with disabilities in service delivery and consumer representatives in policy consultation. This study will be ongoing over the life of the project. The first year focused on primarily clinical assessment strategies. This resulted from the developmental nature of the first project year. Data collected will serve as a baseline against which to measure future project benefits. In subsequent project years additional, objective measures of approaches to consumer involvement and ultimate benefit will be in- cluded. Finally, the study assumes a strong commitment to utilization of the findings. The research questions related to the study are: 1. What is the level of outcome of the individual consumer projects? 2. What is the differential effectiveness of the consumer projects? 3. What is the relationship of agency demographic characteristics to consumer project outcome? 4. What is the relationship of consumer demographic characteristics to con- sumer project outcome? METHODOLOGY Overview The first step in developing the evaluation methodology was to assist the everall project in developing a statement of its expected outcome. A nominal group process 3 was utilized to generate a pool of expected outcomes from project staff, agency staff, consumers and project consultants. Priority outcomes were identified. Measurable indicators of these outcomes were generated and reduced to items in an evaluation instrument. The instrument was given as a post-test at the end of the first project year. Results represent baseline data against which future project benefits will be measured. Additional objective measures will be generated in subsequent project years. Subjects The subjects for the study were drawn from the consumer involve- ment projects staff and from the state agency officer interfacing with the projects. All consumer project and agency staff were included in the sample. 3 Frank Warren indicates that the "Nominal Group Procedure was developed by A. H. Van de Ven and A. L. Delbecq in 1968 as a needs assessment procedure designed to acquire preliminary information prior to using more traditional methods as questionnaires and field interviews. Its use has greatly expanded in the last several years (Foss & Harris, 1976). . It is a technique designed to collect information systematically from two or more people engaged in problem solving, identifying needs, establishing goals or priorities for action." (Organizational Planning for Action Washington, D.C., Federal Programs Information and Assistance Project, 1977 ).