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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 ).