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RECEIVED MAR 2 0 1984
THE INSTITUTE FOR EDUCATIONAL LEADERSHIP, INC.
March 8, 1984
Dear Friend of Independent Living:
The Institute for Educational Leadership (IEL), in cooperation
with the Charles Stewart Mott Foundation, is pleased to provide you
with the enclosed copy of Challenges of Emerging Leadership:
Community Based Independent Living Programs and the Disability Rights
Movement, a report on the status of independent living programs.
Based on the observations and discussion of independent program
directors from across the country, Challenges describes the
philosophy underlying the independent living/disability rights movement
and traces how this philosphy developed into a political and civil
rights movement among disabled persons in the 1970's. Challenges
also looks at the problems currently facing independent living programs
and makes specific recommendations for their solution in five technical
areas:
technical assistance
networking and communications
leadership development
research and policy analysis
long-term planning
The report, developed under a grant from the Charles Stewart Mott
Foundation and written by Robert Funk of the Disability Rights
Education and Defense Fund, is designed to assist you as well as other
persons interested in the independent living movement in exploring
options and strategies for maintaining and expanding independent living
programs. You will find a full list of contributors to this report
with their addresses at the back of the report. Please feel free to
contact the contributors, Bob Funk or me about the report if you have
any questions. We hope you will find Challenges a useful tool in
your operations.
Challenges is available from the Institute for Educational
Leadership for the single copy price of $4.95. A discount of 10% is
available on orders of 10 or more. To order the report, please
contact: Publications Director, Institute for Educational Leadership,
1001 Connecticut Avenue, N.W., Suite 310, Washington, D.C. 2ØØ36.
Sincerely,
Usa T.Walks
Lisa J. Walker
Vice President
LJW:jer
Enclosure: Challenges of Emerging Leadership
1001 CONNECTICUT AVENUE, N.W.
SUITE 310
WASHINGTON, D.C. 20036
(202) 822-8405
RECEIVED MAR 20 1984
Challenges Of
Emerging Leadership:
Community Based Independent
Living Programs And
The Disability Rights Movement
Final Report to the Mott Foundation, 1983
THE INSTITUTE FOR EDUCATIONAL LEADERSHIP, INC.
THE INSTITUTE FOR EDUCATIONAL LEADERSHIP, INC.
The Institute for Educational Leadership (IEL) is a national organization
dedicated to improving the quality and effectiveness of policymaking in education
and related public policy areas by enhancing the effectiveness of individuals and
institutions that influence policy, by encouraging access and participation of all
stakeholders in the formulation of policy, by promoting the involvement of
educators, government decisionmakers, business, labor and the nonprofit sector in
policy discussions, and by promoting access to policy resources, including people,
materials, processes and skills.
Since 1964, IEL programs have served those who have, or will have, impact on
public policy in education and related policy areas. IEL is a nonprofit
organizaton, based in Washington, D.C., with affiliated programs in 40 states.
THE IEL NETWORKS
The Education Policy Fellowship Program (EPFP)--operating in 14 states and
urban areas, prepares mid-career individuals to deal more effectively with the
people, processes, institutions and organizations that shape public policy.
State Education Policy Seminars (SEPS) 40-state network of policy
seminars convening key state political and educational leaders to examine policy
issues, sponsored jointly with the Education Commission of the States.
Leadership for Human Resource Development-a two-year program, sponsored by
the Danforth Foundation, to strengthen education in metropolitan areas by
developing seminars that assist communities in building the communications
networks for meeting their human resource development objectives.
Work/Education Fellowship Program (WEFP)- professional development
program designed to enhance the capability of staff in urban schools to prepare
students for the transition to the world of work.
Education Resources Exchange Program-jointly sponsored with the Council of
Chief State School Officers, designed to build a policy information network among
senior staff members of state education agencies and the federal level.
Education Forum-a Washington-based program for discussion of policy among
congressional, non-profit and business leadership.
Washington Policy Seminar (WPS) national seminar designed to assist
leaders from across the nation to understand and use the federal policy process.
Additional copies of Challenges of Emerging Leadership may be obtained for
$4.95 plus postage and handling by writing the Publications Coordinator, The
Institute for Educational Leadership, 1001 Connecticut Avenue, N.W., Suite 310,
Washington, D.C. 20036. A discount of 10% is available on orders of 10 or more
copies.
Challenges Of
Emerging Leadership:
Community Based Independent
Living Programs And
The Disability Rights Movement
THE INSTITUTE FOR EDUCATIONAL LEADERSHIP, INC.
CHALLENGES OF EMERGING LEADERSHIP
© 1984 Institute for Educational Leadership, Inc.
ISBN No. 0-93784694-5
Institute for Educational Leadership, Inc.
1001 Connecticut Avenue, N.W.
Suite 310
Washington, D.C. 20036
CHALLENGES OF EMERGING LEADERSHIP:
COMMUNITY BASED INDEPENDENT LIVING PROGRAMS AND
THE DISABILITY RIGHTS MOVEMENT
CONTRIBUTORS
BARRY BERNSTEIN
MICHAEL MOORE
BARBARA BRADFORD
CHRIS PALAMES
MARCA BRISTO
TERESA PREDA
BERNIE CANTU
JOHN ROSS
CHARLES CARR
LYNNAE RUTTLEDGE
PAT FIGUEROA
TONY SERRA
LEX FRIEDEN
MAX STARKLOFF
ROBERT FUNK
MARIAN BLACKWELL STRATTON
MARGOT GOLD
LISA WALKER
JUDY HEUMANN
MICHAEL WINTERS
GINI LAURIE
RAY ZANELLA
JEAN MANKOWSKY
This report is the product of a five-day conference
held in East Lansing, Michigan in August 1982, funded
under Mott Foundation Grant No. 81-332. The Foundation
encourages grantees to freely express their views.
The views and comments expressed herein are, therefore,
solely those of the authors and do not necessarily
reflect the views or policies of the Charles Stewart
Mott Foundation.
THE INSTITUTE FOR EDUCATIONAL LEADERSHIP
WASHINGTON, D.C.
CHALLENGES OF EMERGING LEADERSHIP:
COMMUNITY-BASED INDEPENDENT LIVING PROGRAMS
AND
THE DISABILITY RIGHTS MOVEMENT
A Report Produced by the Independent Living
Leadership Strategies Project
Written by:
Robert Funk, Director
Disability Rights Education and
Defense Fund
Berkeley, California and
Washington, D.C.
Project conceived by:
Judy Heumann, Associate Director
World Institute on Disability
Berkeley, California
Chris Palames, Director
Independent Living Resources
Amherst, Massachusetts
Barry Bernstein, former Executive
Director
Vermont Center for Independent
Living
Montpelier, Vermont
Conference Coordinator:
Margot Gold, Consultant
Institute for Educational
Leadership
Washington, D.C.
Conference Recorder:
Marian Blackwell Stratton, Staff
Disability Rights Education &
Defense Fund
Berkeley, California
Project Coordinator & Editor: Lisa J. Walker, Vice President
Institute for Educational
Leadership
Washington, D.C.
Preface
The origin of this report resides in several late night conversations in
1979 with Judy Heumann, Barry Bernstein, and Chris Palames. All were closely
connected to independent living programs, and had had experience working with
other program directors. All were concerned about the growth of the powerbase
of disabled community activists and worried about how to maintain a sense of
purpose between older community based independent living programs and new
centers emerging with federal funds. Quick growth and funding cutbacks
threatened the stability of programs. More so, communications across programs
were limited, and maintaining a unified sense of purpose, value, and goals was
becoming more difficult as directors struggled with day-to-day operations.
Over time, these conversations led to one with Jean Whitney, the Charles
Stewart Mott Foundation program officer interested in independent living, and
a grant to provide the Foundation with a status report on independent living
programs. This report is that status report. It is, more importantly, a much
larger effort to pull together the recommendations for future action of
experienced program directors and others interested in independent living.
The report has been culled from a five-day, intensive meeting in East
Lansing, Michigan in August 1982. The participants in the East Lansing
conference came together to assess the state of the art of independent living.
They were extremely candid with their comments, and they identified those
areas that were particularly problemmatic. Thus, the text of this report
tends to focus on issues and problems, and on solutions to those problems. It
does not convey fully the tremendous impact that independent living programs
have had on their communities, the high quality of services the programs offer
their participants, or the range of expertise which exists in programs. Nor
does it represent fully the methods which programs have used to resolve some
of the problems identified. The reader of this report should understand this
bias.
This report provides a basis for future action in five major areas:
technical assistance, networking and communications, leadership development,
research and policy analysis, and long-term planning. Work in each area is
important if independent living programs and the disability rights movement
are to continue their work to assist disabled persons.
To Judy Heumann, Barry Bernstein, and Chris Palames goes credit for
conceiving of the idea and carrying out the planning over great distance.
Margot Gold served ably and with little reward for coordinating the conference
and laying out the program and conference materials. Marian Blackwell
Stratton wrote the first conference draft and captured not only the conversa-
tions and tone of the meeting, but also its detail and its context. The final
document is the result of discussion with the participants and writing and
rewriting by Robert Funk, while major issues needing his time, attention, and
energy continued to surface at the local and national levels. Finally, all of
us thank Jean Whitney and the Charles Stewart Mott Foundation for taking a
risk and providing support to Independent Living at a time when leadership and
national assistance are greatly needed.
Lisa Walker
Institute for Educational Leadership
-v-
CONTENTS
PAGE
Preface
V
Table of Contents
vii
Executive Summary
1
I.
Introduction
7
II. The Philosophy of Independent Living:
Designing A Program for Independence
9
A. Disabled People Leaders in Program
Design and Management
11
B. Community Based and Community Responsive
12
C. Provision of Services and Advocacy
12
D. The Philosophy Defined
14
III. Development of the Independent Living/
Disability Rights Movement
15
A. Changes in National Disability Policy
16
B. Disabled Persons: A Political Force
17
C. State Funding of Independent Living:
Proliferation of Forms
19
D. Independent Living: A Federal Policy
20
IV. Maintaining Independence: Operational Issues Confronting
the Community Based Independent Living Movement
23
A. Funding and Funding Development
24
1. Images of Disabled People in the
Fundraising World
26
2. Education in Fundraising Skills
27
3. Board of Directors: Fundraising Resource
or Community Responsive
27
4. Economic Development
28
B. Leadership Development and Direction
29
1. The Role of the Center in the Community
30
2. The Role of the Center in Relation to
Other Centers
30
-vii-
3. The Role of the Independent Living Movement
in the Disability Rights Movement
31
4. General Issues Related to Leadership
Development and Direction
32
O Expansion of the Core Constituency
32
O
Racial and Ethnic Minorities, and Women
O
Expanding Involvement of Disability Groups
O
Expanding the Age Range and Including
Parents and Their Children
O The Role of the Non-Disabled Person
36
C. Organizational Development and Management
37
D. Service Delivery and Community Needs
39
E. Public Relations, Education, and Community Support
40
V.
Achieving Independence: Future Options and Strategies
41
A. Support and Technical Assistance
in Operation and Management
44
B. Need for Network Capability and Cross-Program
Communications
45
Level 1: Sharing of Information Across Sites/
Picked Up At Will
46
Level 2: Networking and Communications which
Require Discussion and Decisionmaking by
Independent Living Programs
46
Level 3: Joint Activity on Behalf of
Independent Living Programs
47
C. Leadership Development and Training
48
D. Research, Policy Development, and Long-Term
Planning
50
E. Long-Term Planning/Linkages to the Disability
Rights Movement
51
Appendices
A. Notes on the Text
53
B. List of Participants, Independent Living
Leadership Strategies Conference, July 25-July 30,
1982
57
C. Philosophy of Independent Living
61
-viii-
CHALLENGES OF EMERGING LEADERSHIP:
COMMUNITY BASED INDEPENDENT LIVING PROGRAMS AND
THE DISABILITY RIGHTS MOVEMENT
Executive Summary
I. Introduction
Challenges of Emerging Leadership, a report on the status of independent
living programs, community based programs run by disabled persons to provide
advocacy and support services to the disabled community, is based on the
observations and discussion of program directors from across the country.
II. The Philosophy of Independent Living: Designing for Independence
The independent living movement was formed by severely disabled persons who
designed programs and coordinated community change to achieve independence
despite limits in existing services.
These programs were designed around three basic principles:
- Disabled persons design and run their own programs. As such programs
provide employment and volunteer opportunities which build skills for
integration into the mainstream, peer role modeling which encourages
other disabled persons to take risks and become self-reliant, and a
community based support system which is a symbol of productivity for
the broader community.
-- Programs are community based and community responsive. They meet the
specific needs of their own local community and rely upon the community
for continued leadership, staff recruitment, and support.
-- Programs provide services and undertake advocacy for change in the
broader community. Advocacy broadens the avenues disabled persons can
pursue within a community over time, and teaches self-advocacy skills.
III. Development of the Independent Living and Disability Rights Movements
The true turning point in the emergence of disabled persons and independent
living programs as an acknowledged political force came when the Carter
Administration refused to issue regulations to implement Section 504, the key
anti-discrimination law. The disabled community erupted in demonstrations
around the country and in Washington, D.C., including a 28 day occupation of
offices of the Department of Health, Education and Welfare in San Francisco.
Leaders in the San Francisco occupation were disabled persons from the Center
for Independent Living, a prototype of the new programs emerging as community
based social action programs developed and run by disabled persons.
-1-
The Berkeley model of independent living had been developed by former
University of California severely disabled students who questioned prevailing
thinking that the road to social integration and independence for disabled
persons was through higher education. Acknowledging that disabled persons
live within a physical, social, and economic environment which poses
limitations which must be removed, the model offered services and
self-determination to a wider range of persons in the community who had to
learn to be self-advocates and could not assume higher education as the
ultimate solution.
The independent living programs formed at this time were unique. They were
broad coalitions of disabled persons with different disabilities; they were
focused on community change and disability rights; they were formed and run by
disabled persons living within the community; they provided support to
disabled persons regardless of age disability or severity.
Programs were started in Boston, Houston, Ann Arbor, and other cities, and a
second stage had begun as state rehabilitation agencies began experimenting
with discretionary funds to create a variety of programs described as
independent living programs.
In 1978, passage of targeted federal legislation to support independent living
programs (ILPs) both greatly expanded the number of programs, and produced
models which do not meet the original goals of self-determination. Today, a
total of 135 programs provide attendant care, housing referral,
transportation, peer counseling, and other services designed to facilitate the
integration of severely disabled adults into the mainstream of the social,
economic, and political community. Dependent as they are on government
funding, many of the new programs are in an awkward position as an advocacy
force against the agency that funds them.
The growth of programs stimulated by external funds and governed by state
agencies and the federal government has underscored tensions existing within
the professional and consumer communities over the goal of independent living.
For rehabilitation professionals, independent living services were seen as an
alternative form of services for disabled individuals for whom employment was
not feasible. Today, their growth is beginning to threaten traditional
rehabilitation services, and arguments continue to be put forward that they
will lessen the emphasis on employment as a primary objective.
For independent living proponents, ILPs are part of the process of achieving
independence for disabled individuals; they teach self-support and advocacy,
self-determination, and provide disabled individuals with both peer role
models and avenues for development of pre-employment and employment skills and
continued development. Rather than service delivery in the traditional sense,
the independent living program is a support center for the disabled community
for a wide range of services and needs, providing community based advocacy to
further integration.
The conflict in perception about the goals of independent living programs is
significant to the future of these programs. The lack of understanding of the
broader purposes of these programs by the general public, state and federal
agencies, funding sources, and parts of the disabled community has produced
-2-
policy constraints which limit program effectiveness.
IV. Maintaining Independence: Operational Issues Confronting the Community
Based Independent Living Movement
The community based independent living movement is facing a crisis brought on
by the rapid increase in programs, rapid growth within programs, and growth in
demands by the disabled community. This situation has been exacerbated by
reduced economic resources, public indifference, and the lack of a network
support base across programs.
The most critical issue facing independent living programs is the lack of a
stable and adequate base of funding. At least 80% of the funds for
independent living programs come from a single source: the federal/state
vocational rehabilitation program. Support from a single source is not
healthy, and when that source is a single program, the potential for pressure
is maximized.
Diversification of funding is necessary, but limited by: the current state of
funding for social services and the fact that independent living is a "new
kid" on the block, a lack of awareness and understanding by local government
and private funders about disability, and the youth and inexperience of the
programs in outreach and public relations.
In fundraising development for independent living, a series of issues must be
addressed. The image of disabled people as "deserving poor," dependent and
helpless, must be changed so that priorities for funding change. Program
directors need experience and training in fundraising. The Boards of programs
must be reshaped or other mechanisms found to assist with fundraising.
Programs must begin to explore alternate mechanisms for funding.
A second issue is leadership development and direction. Disabled leaders
must develop their own resource base, support mechanisms, and power structures
which will allow them to continue to grow as a network of community based
programs serving the disabled community and to maintain the integrity of their
programs and goals. What is called for is a targeted effort to more fully
develop the strengths and capabilities of disabled persons in their programs
and across programs.
Leadership development, thus, must be undertaken in the following areas:
training of staff responsible to better utilize the resources of the
community, balance outreach with advocacy strategies, and obtain assistance of
outside groups; training in using skills, knowledge and resources of other
independent living programs; development of linkages between independent
living programs and organizations involved in other parts of the disability
rights movement.
To extend services to disabled persons, increase leadership ranks, and broaden
the base of the independent living/ disability rights movement, independent
living programs must develop strategies to expand involvement and service
delivery to racial and ethnic minorities, women, disabled children and youth,
and disabled older Americans. Linkages must also be formed with parents of
-3-
disabled children.
The issue of the role of the non-disabled in independent living programs must
be addressed. The increasing tendency to hire non-disabled in leadership and
management positions weakens leadership development within independent living
programs, violates the basic principles by which independent living programs
were formed, and undercuts the ability of programs to play a forceful role in
building self-reliance in the disabled community.
Third, assistance in organizational development and management is needed.
Directors of independent living programs are faced with broad responsibilities
and scant staff expertise. These areas include legal issues facing the
corporation, board development and utilization, long-range organizational
development, personnel and fiscal management, and development of program
accountability measures which are appropriate to this program.
Fourth, planning must be begun to deal with the growth in demand for services
and the fiscal constraints limiting expansion of services. Review of what
other programs (independent living and others) have done to respond at this
stage of growth will be important to avoid increasing frustration.
Finally, independent living programs are both service providers and catalysts
for community change. Their ability to educate the community and build strong
relationships of support are critical to survival. Relationships with the
media, other disadvantaged groups, local and state officials, and the business
community must be built.
V. Achieving Independence: Future Options and Strategies
Independent living programs are a base for developing skilled disabled
community leaders, managers, and program administrators. They are an
exemplary system for helping the broader community understand the capabilities
and needs of disabled persons. The dual system of services/advocacy has met
the needs of the client population in ways traditional rehabilitation or
social services programs have not.
Most importantly, these programs have been at the core of the political and
civil rights movement of disabled persons. Thus, their growth and continued
survival is key to a broader set of issues relating to the integration of
disabled persons into the social, political, and economic mainstream.
Growth of federal funding for independent living programs has been a blessing
and a problem. Continued disagreement over the dual goals of
service/advocacy, the increasing dependence of programs on federal money, and
cutbacks in other funding place programs in a very insecure position at the
present time. Assistance from other funding sources (particularly in
understanding the role of independent living programs in expanding
opportunties for the disabled community) is critically important to reduce
dependence on federal money.
Funding is not the only problem. Independent living programs are young, most
being less than four years old. Little exists to provide directors the
-4-
support and back-up they need to continue agency leadership in present
turbulent times. A support system among programs is critically needed.
Recommendations
Support and Technical Assistance for Operations and Management
To assist directors in handling day-to-day management problems, independent
living programs need to develop a mechanism to provide assistance to their
peers: identifying experts in other programs, providing on-site assistance,
and trouble shooting to resolve problems which are causing difficulties at the
program level.
This assistance network could shortcut many problems by developing from their
own experience packages in key areas, such as: non-profit accounting, job
descriptions for independent living programs. This network must be developed
from within the independent living and disability rights movement, managed and
directed by disabled persons.
Network Capability and Cross-Program Communications
A networking capability needs to be developed which will address the needs of
managers for information on day-to-day problems, as well as on longer-term
organizational development issues. This communications network would address
the following areas:
Information Sharing - creation and maintenance of a national disabled
job bank, reporting on individual programs (e.g., extension of services to
new client populations, successful community advocacy efforts, and changes
in federal, state, and local law), and identification of expert resources.
Decisionmaking by Independent Living Programs as a Group - consensus
building on priorities and standard setting for independent living
programs (role of non-disabled persons, relationships with other community
institutions, establishment and assistance to new programs),
representation of the needs of independent living programs to the media,
foundations, corporate funding sources, policymakers and the general
public.
Future Planning Activities for Independent Living Programs - development
of consortium funding, development of alternate methods of program
support.
Leadership Development and Training
A leadership development and training plan must be developed which focuses on
improving skills for program and community activities, as well as skills to
take on activities in the mainstream.
Such a plan would include: broadening skills for planning and management of
independent living (fiscal and program management, public relations,
legislative representation, leadership skills, fund development); recruitment
-5-
and training of new leaders (outreach to minority and underserved communities,
outreach for start-up of new independent living programs); skill enhancement
for existing directors (training in public management and public policy,
development of internship and fellowship opportunities, short-term replacement
of staff for sabbatical activity); linkage with other leaders (internships and
fellowships with other disability rights organizations and with major
institutions to enhance the credentials of disabled leaders).
Research, Policy Development, and Long-Term Planning
A capacity needs to be developed within the independent living/disability
rights movement to carry out long-term planning and policy development. This
capacity would include policy development and applied research activities
(e.g., attendant care programs, independent living programs in rural areas,
involvement of the mentally retarded and mentally ill in independent living
programs, removal of job disincentives from the social security system) and
development activities (e.g., development of an effective method of
evaluation, standards, and economic development options for independent living
programs, data collection on programs and on the disabled community).
Long-Term Planning and Linkage with the Disability Rights Movement
To assist the disabled community as a whole to meet its goals of social,
economic and political participation in the broader community, a capacity for
long term planning must be developed. Areas to be addressed are: the
relationship between disability rights organizations and other similar
disenfranchised groups, the development of a consensus on the steps to take to
further the integration of disabled people, identification of activities to
develop the disabled community as a political power base, and identification
of the impact that changes in technology, economic development, and
political/demographic forces will have on the broader based disability rights
movement.
-6-
CHALLENGES OF EMERGING LEADERSHIP:
COMMUNITY BASED INDEPENDENT LIVING PROGRAMS AND
THE DISABILITY RIGHTS MOVEMENT
I. Introduction
In the summer of 1979, three independent living program directorsl,
attending a conference in Washington, D.C. on another topic, spent their
evenings discussing their programs and independent living at the national level.
It was the kind of discussion which they felt needed to occur more often. Many
disabled leaders of local programs were becoming so preoccupied with day-to-day
management and the struggle to meet immediate needs that they had no such
opportunities to step back and examine their local efforts in the larger context
of the independent living and disability rights movement.
They came to the conclusion that a mechanism was needed to support ongoing
communication among disabled persons who were providing leadership in local
programs, one which would allow them to tap each other for mutual support and
collective action as well as to define and analyze the complex forces which
would impact the growth and ultimate effectiveness of local programs.
The assistance of the Institute for Educational Leadership was enlisted in
defining steps to move in this direction. Out of this collaboration, a proposal
was prepared and submitted to the Charles Stewart Mott Foundation.
The resulting Independent Living Leadership Strategies Project was designed
to meet two primary objectives:
1) Convene a group of individuals who were active in the development
of the independent living movement to begin conversations
necessary to produce a consensus on short-term and long-term
strategies for continued survival and growth of the movement; and
2) Produce a report based upon those conversations which would
express their sense of the significance of the independent living
movement and the challenge facing disabled people and independent
living programs if they are to fulfill their potential.
Initially, the intent was to limit the conference to ten persons from
diverse programs who had extensive experience in running independent living
programs. The agenda and issues would be set in consultation with a
cross-section of program directors and would reflect a diversity of experience,
-7-
geography, and community values. However, as discussions were carried out
throughout the country, it became apparent that this Project was generating
great interest. A number of persons were willing to commit their own resources
in order to attend the conference. Consequently, the original number was
doubled to respond to this interest, while keeping the group small enough to
maintain the character of a "working conference."
The Independent Living Leadership Strategies Conference was held on July
26-30, 1982, at the Kellogg Center of Michigan State University in East Lansing,
Michigan. Twenty-one persons representing programs from all regions of the
country attended the five-day, intensive working session. They were a diverse
group of men and women, coming from rural as well as urban areas and
representing programs serving culturally and ethnically heterogeneous
populations.2
The five-day conference was a unique and valuable experience. Though each
participant brought different personal experiences, skills, and focus to the
conference agenda, they had much in common: all were disabled, all had assumed
leadership positions, and all recognized the central role of disabled people in
a movement whose goals are empowerment, self-determination, and dignity for a
group of disenfranchised people.
The conference also provided the first opportunity for many of these
individuals to meet and discuss the underlying beliefs, values, and aspirations
which are of prime importance in determining the character and effectiveness of
their programs.
The conference began with a consideration of the developmental histories of
programs and the personal histories of the people who were the prime movers in
establishing them. It was recognized that, to an unusual extent, the
distinctive character of each independent living program is a function of the
the personal experiences of its leaders.
Disabled people create or become involved in Independent Living programs in
response to their frustrations in dealing with an unresponsive physical, social,
-8-
and economic environment. The relationships between their own personal
experiences-particularly those of the leader-and the distinctive qualities of
the local environment have significantly affected the eventual structure of each
Independent Living Program, its service and advocacy strategies, and its general
style.
The conference reviewed the current "state of the art," looking at how the
programs are structured, various management styles, and service and advocacy
strategies. Included in this look at the present was an examination of the role
of independent living programs in the growing disability civil rights movement.
Finally, the discussion turned to the future in an attempt to define both short-
and long-term strategies to support the growth and stability of local programs
while preserving their integrity.
The Independent Living Leadership Strategies Conference began the
communication and understanding necessary for the development of a national
network and support system for community based independent living programs. It
also fostered an understanding of the role of independent living in the broader
disability rights movement and the necessary role of disabled people in guiding
the movement.
This report has three aims. First, it provides a brief discussion of the
development of disabled-run independent living programs and their relationship
to the disability civil rights movement. Second, it sets out the short-term
needs which conference participants agreed are threatening the immediate
viability of community based independent living programs. Finally, it discusses
the options and strategies the participants believe are necessary for the future
growth of the independent living/disability rights movement.
II. The Philosophy of Independent Living: Designing a Program for
Independence
"The dignity of risk is what the movement for independent living is
all about. Without the possibility of failure, the disabled person is
said to lack true independence and the mark of one's humanity-the
right to choose for good and evil."3
Today, in part because of federal funding, the concept of independent
-9-
living has come to have many meanings4, and has been used to define many
models of programs. Independent living programs provide services-for example,
housing, attendant care, information and referral, advocacy, independent living
skills training, and transportation. But an effective community based
independent living program provides more than services; it has an overriding
goal of empowerment and the right of self-determination for disabled
individuals.
An article, published in 1978, by Gerben DeJong, sets out three major pro-
positions that underlie the philosophical context of the community based
independent living movement.5
They are:
Consumer Sovereignty -- disabled persons, the actual consumers
of the services, not professionals, are the best judges of their
own interests. They should ultimately determine how services are
organized on their behalf.
Self-reliance -- disabled persons must rely primarily on their
own resources and ingenuity to acquire the rights and benefits to
which they are entitled.
Political and Economic Rights -- disabled persons are entitled
to pursue freely their interests in various political and economic
arenas.
The independent living movement was originally formed in response to the
needs of severely disabled persons who were being ignored by traditional
services programs.6 They were individuals who were presented with the limited
life options of institutionalization or dependency on family support because
their employment potential either was not recognized or was grossly
underestimated by the rehabilitation system. Through the independent living
movement, these disabled persons designed programs and coordinated necessary
advocacy efforts enabling them to achieve independence despite limits in the
existing services system.
Achieving what had not been achieved by other service providers, they
recognized that three elements were critical to designing and maintaining an
effective community based independent living center. They are:7
Disabled People directing the organizational design and
management and involved in the evaluation and provision of
-10-
services;
Community Based and community responsive programs; and
Provision of Services and Advocacy to the community to enhance
self-determination, empowerment, and independence.
Before discussing the individual elements, it is important to note that
they are interdependent. An independent living program must display all three,
not merely to meet an arbitrary definition, but in order to effectively promote
the goals of the independent living movement.8
A. Disabled People-Leaders in Program Design and Management
A basic premise of the community based independent living movement is that
disabled people best understand their needs and the needs of their
communities.9 This assumption was key to development of independent living
centers in the early 1970's and was incorporated in federal legislation in
1978.10 Independent living programs run by disabled people meet other goals
beyond merely better understanding of and ability to meet service needs of the
disabled community. These include:
Employment and volunteer opportunities that develop the skills and
self-reliance necessary for integration into the social and
economic mainstream;
Peer role modeling that encourages others to take risks, develop
skills, and become self-reliant; and
Operation of a community based operation that serves as a source of
support and pride to disabled people in the community and as a
symbol of productivity and self-reliance for the broader social and
economic community.
Though the concept of disabled people developing and managing programs may
seem to be fundamental and obvious for community based support services and
leadership development programs in other human services areas, it was in fact
revolutionary in the early 1970's as applied to disabled persons. Even today it
is the subject of considerable debate. 11 The debate centers on whether or not
a community based program can effectively pursue the support services and
leadership development role if it is not directed and controlled by disabled
people. Some believe direct control by disabled people is a necessity; others
believe significant involvement by disabled people is sufficient. 12 The
Conference participants direct or were involved in programs that fit under both
-11-
sides of the debate. Yet, there is serious concern by disabled people that
effective operation of an independent living center is seriously constrained if
the organization is not responsive to, or a part of, the disabled community. In
these instances, there is less of a feeling of community ownership by disabled
people and confusion as to who defines priorities and evaluates effectiveness.
The debate will continue. It is clear, however, that disabled people
believe direction and control of their own lives is the goal and, at the
minimum, majority control and real involvement at all levels in a center is
absolutely necessary for a program to be effective in providing assistance to
disabled persons.
B. Community Based and Community Responsive
Independent living programs are established to meet the needs of and be
responsive to their communities. A community can have varied geographic limits
and population density.
The term "community responsive," as applied here, means the program is
dependent upon individuals and resources within the local community for its
continued leadership, staff needs, support, and survival.13 Community respon-
sive programs must continue to respond creatively to new needs of the community
in order to further the integration of disabled people into society.
C. Provision of Services and Advocacy
A community based independent living center has the dual function of
providing necessary support services that promote self-determination and
independence and undertaking advocacy within the broader community to promote
the program's services, remove attitudinal and physical barriers, and promote
the integration of disabled people into the social and economic mainstream.
In order to succeed in the broader community where their needs are not
being represented, disabled persons must engage in advocacy efforts to maintain
community based independent living programs. Advocacy can assume many forms.
For some programs, it includes lobbying before a local or state government body
-12-
for financial support. For others, it is requesting a state rehabilitation
agency to provide attendant care to enable severely disabled persons to maintain
employment. For all programs, it is a service: teaching self-advocacy skills
to enable disabled people to be more self-reliant and independent.
The support services provided by independent living programs include, among
others, housing assistance and referral, attendant care, readers for the blind
and interpreters for the deaf, peer counseling, financial and/or legal advocacy,
community awareness, and barrier removal programs. 14 The method of service
provision reflects the community's needs and in each instance is provided in a
manner that promotes dignity, self-determination, and independence.
A major issue that is being debated within the independent living movement
and within the professional establishment is the role of transitional and
residential service programs. The model developed by the Center for Independent
Living in Berkeley is a non-residential services and advocacy center that works
to ensure disabled people can live outside of institutions. Transitional and
residential programs are seen as a continued form of the problem that the
independent living movement was designed to combat-institutions. Thus, deve-
lopment and growth of quasi-institutional models are seen as a direct threat to
the ability of severely disabled people to make choices.
Further, the transitional and residential models are seen as a method of
promoting the eventual non-residential living needs of certain disability
groups. The experiences of many disabled people have been, however, that the
transitional and residential programs do not promote self-reliance, but
perpetuate lives of dependency and segregation, and the further growth of
professional systems to "care for the handicapped."
This issue is one of serious debate and will intensify as independent
living concepts are expanded to meet the needs of a broader spectrum of disabled
people (mentally retarded, mentally impaired, and older Americans).
-13-
D. The Philosophy Defined
Clearly, these three elements are the foundation of independent living and
define a philosophy which is wholly consistent with basic American political
tenets. The participants in the conference developed a beginning "Philosophy of
Independent Living" to elaborate on these values and to lay a basis for their
future planning. The statement is reprinted in full in Appendix B. The preamble
states:
Preamble
Among the foundations of our society is the acceptance of certain
fundamental human rights. Independent Living is based on the belief
that all individuals, including those with disabilities, shall have
an equal opportunity to exercise those rights. The independent
living movement shall affirm the basic human rights of disabled
persons:
To participate in the prerogatives and responsibilities of
citizenship
To equal employment opportunities
To access to public facilities, transportation, and affordable
housing for all disabled people
To the supportive services necessary for employment opportunities
and full participation in society
To free, appropriate, and non-segregated education
To bear, raise, and adopt children
To full participation in the cultural, social, recreational, and
economic life of the community
To live in dignified independence outside of institutional settings
This philosophy addresses a basic concern of disabled leaders that the
public understand effective community based independent living programs not as
service providers but in their role as supporting and promoting the right of
individual disabled persons to participate and contribute to society. Community
based independent living programs, at their base, are a mechanism for leadership
development, representation, and self-advocacy for a group of people that
society, to date, has only seen as "patients" or "clients."
-14-
This role is misunderstood by persons within the independent living and
disability rights movements, by disability professionals, by decisionmakers, and
by the general public. This misunderstanding has impact on whether or not an
entity called an independent living program is truly a community based,
community responsive center. Failure to clarify this concept allows the public
to deny the need for and acceptance of disabled people as leaders and directors
of programs affecting their lives. Finally, the perception of independent
living as "merely service providers" undercuts the future of independent living
programs as catalysts for community and individual change, posing the option as
eventual integration with the rehabilitation and social service systems as an
alternative form of rehabilitation services.
III. Development of the Independent Living/Disability Rights Movement
It is difficult to point to the specific times or places where the inde-
pendent living movement began. However, in a period of years from 1960 to the
mid-1970's, we can describe a series of grassroots activities and federal policy
changes that gave meaning to the movement we see today. 15
The independent living/disability rights movement is rooted in the 1960's,
though many of the essential policy and programmatic innovations which defined
the formal structure we see today did not appear until well into the following
decade. During the sixties, disabled people were profoundly influenced by the
social and political upheaval which they witnessed. They identified with the
struggles of other disenfranchised groups to achieve integration and meaningful
equality of opportunity. They learned the tactics of litigation and the art of
civil disobedience from other civil rights activists. They absorbed reform
ideas from many sources-consumerism, self-help, de-medicalization, and
de-institutionalization.l6
One of the distinguishing marks of sixties' politics shared by many who
swelled the ranks of the disability rights and independent living movements was
an emphasis on personal transformation-changes of consciousness-preceeding and
underpinning social activism. Disabled people had to achieve a dramatically new
and positive valuation of themselves as a group as a pre-condition to effective
organizing in pursuit of specific programs and policies. A critical aspect of
-15-
this process of rethinking disability was discarding psychologically the
sectarianism which had long fragmented disabled people into so many
subgroups--the blind, spinal cord injured, retarded, post-polio, etc. From
these experiences, many disabled individuals emerged for the first time with a
sense of themselves as members of a unique and valuable community, a sense
supported by their comprehension that they had the right-hitherto denied-to
participate as fully equal members of American society.
One remarkable fact, viewed in retrospect, was the large number of disabled
individuals, many of whom were substantially isolated, preparing to act along
similar lines. The implication of their newly politicized perspective on
disability issues was that real reform could be assured only by the development
of a broad-based coalition of disabled people throughout the United States who
demanded both fundamental national policy reforms and community based support
services that would permit them to break from the tradition of dependency and
institutionalization and live as part of the social and economic community.
A. Changes in National Disability Policy
At the national level, revolutionary reform in disability policy occurred
in the late 1960's and early 1970's. Traditional programs, policies, and
assumptions regarding disabled people were attacked through the courts and
legislatures. Advocates brought due process and equal protection challenges to
the dehumanizing conditions in segregated institutions and sheltered schools.
Supportive members of Congress passed landmark legislation to extend civil
rights guarantees to disabled people. In short, disabled people began to be
seen as a class of disenfranchised people denied basic civil liberties and
social access.
Congressional reform occurred at a rapid pace. Integration and equality of
opportunity mandates were enacted to provide access to public buildings and
transportation.17 The Rehabilitation Act of 1973 was passed, not only
strengthening the commitment of the federal/state vocational rehabilitation
system to address the needs of the severely disabled persons, 18 but also
containing several policies with even broader implications. Section 504 of the
Act defined the key national mandate prohibiting discrimination in employment,
-16-
education, and health and social services against handicapped individuals by
recipients of federal assistance, in language identical to that used in the
Civil Rights Act of 1964, and later in the Education Amendments of 1972 applying
the same federal guarantee to women. 19 Title V further mandated the creation
of a federal board to coordinate and ensure access to public buildings and
public transportation20 and prohibited discrimination in employment by
requiring affirmative action by federal agencies21 and federal
contractors. 22
Through passage of the Education for All Handicapped Children Act, Congress
mandated an end to separate and unequal educational opportunities. It required
that "to the maximum extent appropriate, handicapped children (shall be)
guaranteed a free, appropriate public education and (shall be) educated with
children who are not handicapped "23 Finally, it passed legislation
containing a bill of rights for persons with developmental disabilities, with
the primary goal of providing services that would further the individual's
potential to become a participating member of the community. 24
The Congressional reforms of the 1970's took aim at the roots of historical
prejudice and stereotypes that had isolated disabled people from organized
society as an inferior caste. A clear summary of the overall intent of these
reforms was stated in 1974:
The Congress finds that
it is essential
to assure that all
individuals with handicaps are able to live their lives independently
and with dignity, and that the complete integration of all
individuals with handicaps into normal community living, working and
service patterns be held as the final objective. 25
The passage of federal legislation, however, is not sufficient within the
American political system to realize the reforms which impact on the lives of
the constituency for which the legislation is intended. Adequate methods of
implementation and enforcement must be defined, and these, in turn, must be
reinforced by a broad base of support at the community level.
B. Disabled Persons: A Political Force
In April 1977, an event occurred which illustrated this process in relation
to the development of disability policy. Demonstrations by disabled people
-17-
occurred throughout the country to protest the failure of HEW Secretary Joseph
Califano to sign regulations implementing Section 504 of the Rehabilitation Act
of 1973.
In the four years since the enactment of Section 504 in 1973, a set of
compromise regulations had emerged from the evaluation of over 30 hearings and
over 1,200 written comments. In response to Secretary Califano's refusal to
issue the regulations, demonstrations occurred throughout the United States. In
San Francisco, disabled activists occupied the offices of the Department of
Health, Education and Welfare for 28 days until the regulations were signed.
Protest activities were also staged in other major cities-including Washington,
D.C.--to bring public attention and political pressure to bear on the enactment
of the Section 504 regulations. These demonstrations, for the first time, showed
the nation and policymakers that the growing grassroots disability rights
movement was a significant political force.
A notable presence at the San Francisco sit-in were a number of individuals
from a new kind of disability organization which had appeared in Berkeley
several years before. The Berkeley Center for Independent Living (CIL), since
its establishment in 1972, had gained national attention both as an expression
of the new activism among disabled people and as a translation of the ideology
of independent living into a dynamic program integrating services with social
action. The creation of this prototype Center had given the independent living
movement credibility and momentum.
Berkeley had been founded by seven severely disabled persons, including
former University of California students, who had participated in the
University's Disabled Student Program. (From that perspective) They had come to
question the assumption dominant in rehabilitation thinking at least since the
establishment of the disabled student program at the University of Illinois at
Champaign/Urbana in 1950: that higher education was the "royal road" to social
integration and personal independence for severely disabled persons. While it
was recognized that gaining access to universities and colleges had been an
essential innovation and one which needed to be expanded through application of
the Section 504 mandate of physical and program accessibility, higher education
-18-
was now seen as just one point of access to independence.
The significance of the strategy embodied in the Berkeley model was that it
not only had a flexible and individualized sense of the service needs of
severely disabled people, it also took into consideration that individuals live
within a physical, social, and economic environment which must be modified in
significant ways to make independent living possible. It rejected residential
programs as inherently paternalistic and debilitating and extended this critique
to other social service practices which continue the dependency of the "client"
constituency. Berkeley combined services and advocacy in the most
straightforward and logical way: the Center itself was controlled and largely
staffed by disabled people and designed to serve their needs as they saw them.
An example of what disabled people could achieve if given a meaningful
opportunity, the Berkeley Center became a symbol of hope and dignity as well as
a model for efforts in other communities. Its profound influence extended not
only to disabled people throughout the United States, but also to many
disability professionals, 26 Congress, 27 other important decisionmakers, and
fostered the establishment of disabled run groups that focused upon policy and
practices from the perspective of empowerment, integration and civil rights28.
C. State Funding of Independent Living: Proliferation of Forms
In the mid-1970's, several state rehabilitation agencies (California,
Michigan, and Massachusetts) influenced by the success of the Berkeley Center
and anticipating the eventual enactment of federal independent living mandates,
began experimenting with state discretionary funds (Innovation and Expansion
Grants) to create a variety of programs described as independent living
programs. For example, in 1974, the Boston Center for Independent Living-the
first of five programs funded in that state through the grants-began providing
transitional/residential programs and related support services. Independent
living programs also formed in Houston, Ann Arbor, and numerous other cities in
the early and mid-1970's.
As programs proliferated and assumed a variety of forms, the question of
what it meant to be an independent living program was raised. The two most
-19-
significant dimensions of the emerging controversy were the distinctions between
1) "residential/transitional" VS. "community oriented" services and 2) "disabled
control" VS. "disabled participation" in the organizations. While both issues
remain significant, the latter was particularly prominent among the concerns
discussed at the conference.
Independent living programs of the 1970's were not the only organizational
forms which this activism generated. Coalitions, many under the sponsorship of
or in conjunction with independent living programs, formed to press special
issues as well as broad social policy affecting all disabled people, through
programs in community education, organizing, research, and advocacy.
These independent living programs and advocacy groups are unique for
several reasons. First, they cut across traditional medical/ charity
distinctions to work with coalitions of people with different disabilities.
Second, the new organizations were formed by disabled people living in the
community who took on leadership roles to develop and run programs that met
their needs.
From the very beginning, they differed from traditional social service
programs which served disabled people in that they were designed to provide
support to disabled persons from birth to death and were not "closure-oriented"
in a traditional casework mode. Most started as coalitions of physically
disabled and blind persons, and have painstakingly expanded these coalitions to
include all disabilities in the community. Finally, these early programs
started without the assistance of targeted federal money and have been
maintained without this assistance.
D. Independent Living: A Federal Policy
Government funding of programs brought very different ideas about
independent living. The differences stem from viewing it professionally as an
innovation in rehabilitation methodology or as an expansion of the role of the
state/federal vocational rehabilitation system. The impact of this professional
point of view increased dramatically the tension emerging within the independent
living movement with the advent of specific federal funding for independent
-20-
living services.
In 1978, Congress authorized support for independent living programs for
the first time. 29 The Rehabilitation Act of 1973 was amended to add Title
VII, Comprehensive Services for Independent Living. 30 As expressed in the
legislation, Title VII was intended to assist in the development of community
based service centers to provide housing referral, transportation, attendant
care, and peer counseling and other services. The goal was to facilitate the
integration of severely disabled adults into the mainstream of community,
social, and economic life-i.e., to decrease their dependence and increase their
self-determination and ability to be productive and contributing members of
society.
Title VII established a basic change in federal disability policy, and in
doing so reflected the growing influence of the community based independent
living movement through specific legislation drawing on program experience of
the early centers. 31
Title VII has resulted in a marked increased in the number of independent
living centers throughout the United States. 32 For this reason alone, it has
been of great benefit to disabled people in expanding needed services. However,
the inclusion of independent living under the federal-state rehabilitation
system has created conflicts both in the professional rehabilitation system and
in the independent living movement. This results in part from a basic
disagreement between professionals and "consumers" over the goal and intent of
independent living programs.
Independent living was originally seen by rehabilitation professionals as
an alternative form of services for disabled individuals for whom employment was
not a feasible objective. Thus, for professionals the goal of independent
living was provision of services that would permit certain disabled persons to
live in a community short of being gainfully employed. Although this view is
not shared by disabled advocates, many rehabilitation professionals retain this
view and see independent living as a service form that competes with rehabil-
itation: As independent living programs grow, these professionals see them as
-21-
having potential to undermine the specific closure-oriented goal of gainful
employment.33
From the point of view of grassroots independent living program directors,
independent living encompasses employment. The goals are not competing, and
employment is one of the ways an individual can achieve independence. Further,
independent living is viewed by disabled leaders as a process which may require
continued provision of a particular service in order to maintain indepen-
dence. 34 The traditional rehabilitation service system, however, assumes a
termination point in the provision of services, i.e., the individual is
employed, and the rehabilitation goal is achieved.
This policy conflict between vocational rehabilitation professionals and
the community based independent living movement has major significance. First,
on the federal level, currently funded independent living centers supported by
Title VII cannot expect to depend on federal monies forever for existing
programs. This demonstration program assumption has the effect of putting
pressure on programs to conform to traditional service delivery norms. Second,
federal Title VII funding of independent living programs is generally
administered through the state rehabilitation agency. To the degree the state
agency fears the independent living concept, misunderstands the leadership
development role, or has been involved in conflict with independent living
programs in their community advocacy role, there is an obvious danger of
reducing the effectiveness of the community based independent living model
through the imposition of rehabilitation service provision regulations35 and
traditional accountability measures. 36
Third, the federalization of independent living under the rehabilitation
system has created tension in the independent living movement. The use of the
concept "independent living" under federal legislation and the application of
the concept to a wide range of program models which are not run and directed by
disabled people and do not include community advocacy have created major
political issues for community based programs. Can independent living be a mere
-22-
provision of services without undermining the overall goal of empowerment and
advocacy? What is the value of federal funding if it creates another form of
dependency and the loss of community control?
The policy conflict involved in the needs of state agencies for administra-
tive standards versus the need of programs for flexibility to meet individual
service needs has been the subject of conferences, professional papers, and
policy reports, 37 many involving disabled people. The Independent Living
Leadership Strategy Conference and report is the first attempt by disabled
leaders and independent living program directors to look at these conflicts and
needs from a grassroots perspective and to propose solutions that will assist
the community based movement and enhance the rights of disabled people.
IV. Maintaining Independence: Operational Issues Confronting the
Community Based Independent Living Movement
The community based independent living movement is facing a crisis. The
crisis has been brought on by the rapid increase in the number of individual
programs, the rapid growth within programs, and growth in the population that
wants, needs, and demands to be served. The present situation has been
exacerbated by reduced economic resources, public indifference, and the lack of
networks and support mechanisms for independent living programs.
This crisis is not one of confidence or of a lack of belief in the goals of
the independent living movement by disabled persons. Rather, it is a period in
the evolution of the disabled-run independent living programs that requires
evaluation and planning. The East Lansing Conference, from which this report
comes, presented a unique opportunity for disabled leaders to outline the
problems that must be confronted for continued growth, and develop options and
strategies to assure that independent living programs and the disability rights
movement can continue to work toward the social, political, and economic
independence for all disabled people.
The operational issues Conference participants identified can be divided
into five categories:
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Funding and Funding Development
Leadership Development and Direction
Organizational Development and Management
Service Delivery and Community Needs
Public Relations, Education, and Community Support
A. Funding and Funding Development
The most critical issue facing disabled-run independent living programs is
the lack of a reliable base of continued and adequate funding. An estimated 80
to 90 percent of independent living program funds are received from the
government. 38 These are primarily grants and contracts from state
rehabilitation agencies and federal Title VII funds provided through the state
agencies. 39
Government funds have resulted in a rapid increase in the number of
programs that provide independent living services40, and are of great benefit
to disabled people nationally. However, the heavy reliance on this single
source of funds has created a series of problems for the community based
independent living movement.
Government funds are not, as a general rule, a reliable source of long-term
support. 41 This factor undermines the stability of the movement and of
specific programs and services. Funds provided by state rehabilitation agencies
are in the form of grants and contracts for provision of services. Generally,
they are discretionary funds of the state rehabilitation agency and are subject
to budget restrictions and revisions.
The other major source of federal funding is that available from the state
agencies to assist in establishing centers for independent living.42 Title
VII has five parts, of which only one, Part B, has received appropriations from
Congress. 43 Part B appropriations began at $2 million in fiscal year 1979 and
grew to $18 million in fiscal year 1982.
In the first year of funding under Part B, ten states were awarded grants
of $200,000 to develop and establish centers. These grants were for a
-24-
three-year cycle, with applications for continued funding required each year.
In the second year, the original ten states were refunded and an additional 25
states were eligible to apply. In the third year, the original ten received
their last year of funding, the second group was refunded for their second year,
and a third group was funded, bringing the number of states and programs
receiving Title VII money to 35 and 135 respectively.
The fourth year presents a major problem for the federally funded centers.
Part A was designed to provide funds that, after the initial three year start-up
cycle, would be available for provision of direct services. The state agencies
were to receive funds for purchase of independent living services from existing
centers. Part A, however, has never been funded and is not expected to be in
the near future. In addition, for the majority of programs, state and local
government funds and private funds have not made up the difference. Thus, the
cycle of funding new centers continues, and existing centers are being defunded
or must compete with new programs for reduced levels of funding.
All of the foregoing raises an additional point regarding the impact of
federal funding. There has never been an effort to think through the long-term
purposes of federal resources in independent living-certainly none which
involved the disabled community and resulted in a consensus on purpose and
direction. Without a comprehensive plan, one can expect mixed messages on
funding stability, funded agents, and goals and purposes.
The inability of community based centers to find sufficient alternative
sources of funding results from numerous factors. First, there is severe
competition at the local level for resources to replace those lost by federal
reductions in all social service programs. In this regard, disabled-run centers
are at a disadvantage as the new kid on the block looking for funding from other
groups' funding sources.
Second, there is a lack of awareness and understanding on the part of local
government and private funders regarding the unique service/leadership role of
the independent living programs. An attitude generally exists that the services
duplicate those of existing social service agencies or that disabled people are
-25-
presently provided for by existing federal and state programs and by private
charities--so much are disabled persons seen as non-active persons to be dealt
with by charity or welfare programs.
The majority of community based centers have been in existence for less
than four years. To implement and establish a new organization as well as carry
out the community education and outreach necessary for long-term survival is a
major undertaking for any program. However, in the case of the disabled-run
community based centers, this is made more difficult because federal start-up
money is provided for only three years. During this time, the organizational
leadership and Board are, by definition, developing new skills and potential.
And they are undertaking a venture in social services/leadership development
that is revolutionary in disability policy.
The older community based centers that were established prior to the Title
VII legislation have a slightly broader funding base and, in a few cases, are
established as an important and unique part of their communities. However, the
passage of time does not solve the funding issue.
In developing and operating the centers, the Conference participants
identified a series of issues that must be addressed to ensure a secure funding
base for long-term survival for independent living specifically and the
disability rights movement generally.
1. Images of Disabled People in the Fundraising World
The independent living/disability rights movement is struggling to
overcome traditional images of dependency. Changing these public
attitudes is the major task of the movement and is a major obstacle
in obtaining support from funders.
Traditional charities, utilizing images of "crippled" children and
helpless adults, have fostered the portrayal of the charity model in
the funding world. Government programs, in the great majority, were
developed to take care of the "deserving poor" on the theory there
-26-
was no meaningful future for most disabled people.
This pattern of charity and paternalism in traditional fundraising
betrays the philosophy and goals of the independent living/disability
rights movement. 44 It presents a major obstacle that can be
overcome only by educating funders and increasing the involvement of
disabled people in the fundraising world through positions on Boards
and Advisory Boards and in the direct process of fundraising. Only
through this process can disabled leaders reshape the priorities of
funders away from programs that continue to support dependency and
charity to programs that support the integration of disabled people
into the social and economic mainstream.
2. Education in Fundraising Skills
Directors of nonprofit organizations all recognize that fundraising
is part skill, part art, and part contacts. They also recognize that
fundraising is, by necessity, a full-time occupation and a process
that requires long-term planning.
Though all community based independent living centers have fund-
raising mechanisms, fundraising is generally one of the respon-
sibilities assumed by the Director and not through an established
development office. The Conference participants recognized a need
for training in fundraising skills and related long-term planning.
3. Board of Directors: Fundraising Resource or Community
Responsive
Traditional nonprofit organizations develop Boards of Directors that
can assist in the fundraising process. The Board can be an important
resource, and, in many cases, a willingness to assist in fundraising
is a requirement for Board membership.
Community based independent living programs vary greatly in their
Board make-up. Most programs, however, attempt to ensure the
-27-
majority of members are disabled people to ensure the organization is
responsive to community needs.
In many cases the disabled person serving as a board member will not
have the broad background and experience necessary to assist in
fundraising. This includes contacts, skills and resources a
non-disabled person selected as a board member is more likely to have
developed as a participating member of society. Thus the desire to
have a community responsive Board made up of disabled leaders may be
inconsistent with the generally assumed role of fundraiser that board
members undertake.
The Conference participants recognized a need for education in Board
development, utilization of Board members, and development and
utilization of Development Advisory Boards.
4. Economic Development
Economically disadvantaged groups have traditionally undertaken
community based business ventures to provide meaningful employment
opportunities, to develop leadership and business skills, and to
provide a secondary funding source for community based programs.
A number of community based independent living programs have
developed business enterprises related to their community service
needs. Most notably, businesses have been developed in the areas of
wheelchair sales and repair, the sale of other disability aids, and
van and motor vehicle modification for disabled drivers.
Other groups which have developed profit-making businesses have not
been able to fully sustain all their programs and costs from this
source alone. Clearly, there will always be a need for other sources
of funding, particularly from government and foundation sources. The
Conference participants recognized that there must be further
research and development in this area.
-28-
B. Leadership Development and Direction
The original centers grew in an organic fashion: a leader or group of
leaders saw a need and developed mechanisms and coordination to meet that need.
The leadership group generally had to undertake fundraising, organizational and
program development, and related activities involved in creating and directing
an alternative social service/leadership development organization. Further, the
leadership group was acting alone, outside the mainstream, and had few, if any,
outside resources or sources of support.
Federal involvement in independent living has, to some extent, assisted in
the development process of the centers. But, this involvement has not greatly
assisted disabled leaders in developing necessary leadership skills. Rather, it
has imposed traditional structures and management techniques upon a
non-traditional service/leadership development model. 45
The resulting conflicts between the rehabilitation professionals and the
disabled leadership, 46 and the continued pressure to conform to traditional
service provision models and accountability measures have made disabled leaders
recognize that they must look to developing their own resource bases, support
mechanisms, and power structures in order to maintain the integrity of the
community based independent living model.
The push to maintain the integrity of the independent living movement is
derived from the recognition that to achieve self-reliance and the right to
shape their own destinies, disabled people must be leaders in the process. This
recognition is not a denial of the need to develop professional organizations
that meet high standards. Rather, it is focused on the issue of who develops
the standards, professional criteria, and evaluation tools, and whether or not
these criteria and standards are appropriate to the goals of a community based
independent living program.
Leadership development is a clearly recognized need that must be viewed
from a number of levels. At each level, the goal is to increase the
-29-
self-determination and self-reliance of the individual and further the
integration of disabled people into the broader social and economic mainstream.
1. The Role of the Center in the Community
Each Center must, by definition, be an agency oriented to leadership
development. As part of its role to be responsive to the community
and meet community needs, 47 the Center must continually undertake
outreach and education activities to assist disabled individuals who
want increased options and access to the community. The Center must
also assist in skills development for the Center's personnel both to
meet their own needs and to assist disabled individuals in achieving
employment and education options in the broader community.
The major responsibility for ensuring that the Center is providing
the necessary services and engaging in appropriate advocacy efforts
for the community rests with the Executive Director and the Board of
Directors.
The Conference participants recognized the need for training and
support in leadership development and in organizational planning for
staff and Boards of independent living programs. While disabled
people must be in top management positions and in majority numbers on
the Board, many disabled people are new to the experience of
management or serving on a Board of Directors and unsure of the
responsibilities and conflicts inherent in these roles.
2. The Role of the Individual Center in Relation to Other
Centers
There is a sense of isolation among the leaders of independent living
programs, because they operate alone, without the reinforcement of a
larger group with similar goals. The lack of communication among
programs also underutilizes the skills, knowledge, and resources
available within the network.
-30-
The Conference participants recognized the need for a strengthened
network of community based independent living programs to provide
support, resources, and information sharing. Further, the expressed
need went beyond networking among the Centers, to the need for mecha-
nisms to educate the general public and decisionmakers on the role of
independent living centers and facilitate involvement of programs in
the larger decisionmaking and policy development process.
3. The Role of the Independent Living Movement in the Disability
Rights Movement
The independent living movement and disability rights movement are
united by the same philosophical values and the same goals of
integration into the social, political, educational, and economic
mainstream. Disability rights organizations operating on both the
state and the federal levels have increased in number over the last
five years. They focus on broader policy issues and pursue their
goals through programs in education, research, advocacy, networking,
and leadership development48. Their leadership includes an
increasing number of disabled people from leadership positions with
independent living programs. In many cases, the disability rights
organization may be part of an independent living program or working
in coalition with one or more centers. These organizations promote
disabled leadership and involvement in the decisionmaking process and
tend to be run by and for disabled people.
Disability rights organizations began because, like independent
living programs, there was a recognized need. The leadership became
aware that as independent living programs assisted an increasing
number of disabled people to pursue lives with greater freedom of
choice, true integration would occur only by increasing their
involvement in the broader social and political arena. The question
became: What is the value of achieving self-reliance and independent
living skills if one cannot utilize them to achieve full potential
and foster change in the social, educational, and economic
mainstream?
-31-
From the point of view of disability rights advocates at the state
and national levels, the process of fostering broad change in the
social and political system has value only if there are increasing
numbers of disabled people wanting and able to lead productive, fully
integrated lives. It is clear, therefore, that the community based
independent living programs play a central role in the process of
integration by acting as catalysts for change in local communities
and in the individual lives of disabled people. They are a central
part of a process of social and political change that is having
greater impact each year.
The Conference participants recognized that the independent living
movement is a key part of the process of social change necessary for
integration. However, it was recognized that the dynamics of this
key role is not well understood by individual centers and that
greater communication, leadership development, planning, and linkage
were necessary to ensure the movements pursue complementary goals and
coordinate activities to ensure long-term social change and
integration.
4. General Issues Related to Leadership Development and
Direction
A series of general issues that affect leadership development and
direction of the independent living and disability rights movement at
all levels were raised at the Conference. These issues address the
concern that as the movements mature, they must expand programs and
activities to include disabled people outside the traditional core
constituency49, and they must address the role of the non-disabled
person.
Expansion of the Core Constituency
As with other social movements, the early leadership in the
independent living/disability rights movement tended to be better
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educated and from more stable socio-economic backgrounds. They
tended to be young adult white males from a few specific disability
groups: spinal cord injury, postpolio, cerebral palsy, muscular
dystrophy and multiple sclerosis 50 As the movements have
matured, there has been increasing recognition that the constituency
base and the leadership must expand to include: (1) greater
proportions of racial and ethnic minorities and women; (2) a broader
range of disability groups; (3) a broader age range of disabled
people, including children and older persons; and (4) parents of
disabled children;
Racial and Ethnic Minorities and Women
It has been noted that there is a higher incidence of disability
among racial and ethnic minorities, women, and persons who are
poor. 51 It is unclear whether the lower involvement of racial and
ethnic groups in the independent living/disability rights movement is
a product of the larger issue of sex and race discrimination; a
product of differing family and cultural backgrounds relating to the
treatment and expectations of disabled persons who are of different
races or women; or a combination of both and other unknown factors.
The Conference participants strongly believe work must be undertaken
to include racial and ethnic minorities and women in programs and
activities and in leadership positions
Expanding Involvement of Disability Groups
As with racial minorities and women, there is an understanding within
the movement that both independent living and disability rights
groups must expand their programs and activities to include
disability groups outside the traditional core constituency. Policy
changes in the last decade away from institutionalization and toward
community based living have placed new pressures to expand programs
and activities that will open society to participation of mentally
retarded and mentally impaired persons, as well as increased
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participation by deaf and blind persons
The growth of the independent living centers has had major impact on
deinstitutionalization. This factor is placing added pressure on
independent living programs to develop service models and provide
resources to serve and assist these additional disability groups. It
is recognized that a failure to undertake these actions may result
again in a split between the physically disabled and mentally
disabled, in the duplication of many programs, or in an increased
tendency to put resources into traditional residential programs
rather than non-residential services and advocacy centers.
The Conference participants recognized work must be undertaken to
include a wider range of disability groups in disabled-run,
non-residential independent living programs and in the broader
disability rights education and advocacy policy activities.
Expanding the Age Range and Including Parents and Their Children
As noted, the early leadership of independent living programs tended
to be young adults, with a marked absence of older persons and little
focus on services for disabled children and youth.
From one point of view, this can be understood if one considers the
evolution of the community based centers. They were designed by a
constituency of disabled persons who were excluded by existing
service patterns. They were individuals of an age and educational
level who wanted to live outside a family setting and were not
prepared to spend their adult lives in nursing homes and
institutions.
There is a clear recognition that the incidence of disability
increases with age and that the concepts and services provided by
independent living programs are of value to older Americans. As a
result, many community based programs serve older persons as a
general part of their services. However, there has been little
-34-
involvement of older persons in leadership positions in either the
independent living or the disability rights movement. This may
change as the leadership of the movements grows older52 and as the
organizations representing and serving both populations work on
issues affecting disabled and older persons. 53
A second issue is involving children and parents in the movement to
integrate disabled people into society. There has traditionally been
a split between parents and disabled adults. In large part, this is
in response to a view that parents have played a major part in
maintaining dependency and paternalistic patterns of living.
However, there is increasing recognition on the part of disabled
adults that they must ensure the integraton of disabled children in
education and service programs in order to promote system and value
changes in the primary and secondary schools and in disabled and
non-disabled children so that segregation and disenfrachisement of
disabled people is not perpetuated. This integration is necessary to
ensure that the concepts and philosophy of the independent
living/disability rights movement become the norm for future disabled
leaders.
Further, there is increasing recognition by parents that role models
for their children must come from disabled adults. If disabled
adults are self-reliant, living productive lives, and undertaking
leadership positions, it offers greater hope for each disabled
child's future.
Coalition work between parents and disabled adults has been most
effective on issues involving section 504 and P.L. 94-142, which
prohibit discrimination in education, social services, and
employment. 54 However, there is increasing involvement by disabled
leaders on the community level in schools and with parents groups
undertaking advocacy and services activities.
The Conference participants believe disabled-run independent living
-35-
centers and disability rights groups must undertake and explore joint
activities that will further integration and participation.
The Role of the Non-Disabled Person
A major issue that has become a focus of greater concern and debate
over the last few years is the role of the non-disabled person in the
independent living/disability rights movement.55 It is similar to
the tensions that existed in the civil rights movement on behalf
racial minorities and women. 56
It is an important issue in disability because of the history and
numbers of traditional professions and programs that were dedicated
to care for, help, and protect disabled people. The programs
traditionally molded the life options and directed decisionmaking for
the disabled person in education, rehabilitation, and related social
services; employment, training, and opportunities; medical care; and
recreation/leisure. Each program area fostered the problems disabled
people face of dependency, segregated and sheltered care, and
stereotyped job options. The charities fostered attitudes of pity
and helplessness in order to raise funds for disabled people. In
each area, the decisionmakers and providers have been and continue to
be predominantly non-disabled.
Both the independent living and disability rights movement focus upon
disabled people assuming control over their own lives and their
increased involvement in the decisionmaking process. The role of
non-disabled persons will continue to create controversy within the
movement and with non-disabled professionals in both rehabilitation
programs and related policy areas, and in the broader civil rights
policy arena.
The Conference participants believe the issue must be addressed both
within local community programs and in the broader movement. The
participants recognize an increasing tendency to hire non-disabled
-36-
persons for leadership and management positions, thus weakening the
leadership development role of the programs. This tendency is be-
coming more apparent as the centers are pressured by federal and
state agencies to become more oriented toward traditional social
services and less oriented toward advocacy. The long-term result of
this pattern is the loss of the ability to serve as catalysts for
community change and change in the lives of individual disabled
people in the community.
For both the independent living and disability rights movement this
is a major concern. The loss of leadership at the local level and
the loss of mechanisms to develop new leaders weaken the movement's
ability to achieve its goal of integration. Thus, the participants
recognized that the issue must be addressed and must be confronted in
a manner that is not merely separatist, but recognizes the necessity
of working with and within the professional system to affect
necessary change, and supports and fosters the ability of disabled
people to direct their own lives and achieve increasing involvement
in the decisionmaking and policy setting arenas.
C. Organizational Development and Management
As discussed above, the director of a community based independent living
program is not only a community leader, but also the executive administrator of
a non-profit corporation. Each of the Conference participants recognized a need
for support, technical assistance, and training in administrative and management
skills.
Legal and Corporate Issues: A large group of independent living
programs do not have a corporate attorney representing them. In
some cases, the management is not sure if and when such assistance
is necessary. This is true because of cost: pro bono assistance
is generally limited in use because it is free. Further, many of
the potential problems confronting independent living programs are
-37-
unique to disability groups, and attorneys who are familiar with
these issues and non-profit organizations are limited in number.
The issue areas range from adequate articles and by-laws to
contracts and contractual liability, from potential tort liability
in provision of services (e.g. attendant, wheelchair repair,
transportation) to personnel policies.
The need can be addressed by development of guides to potential
problem areas; individual technical assistance in general problem
areas; and assistance in developing contacts among and support from
the local private bar.
Board Development and Utilization: Outside the area of leader-
ship development, training and support for directors in Board
development and utilization of the Board in policy setting,
planning, and fundraising are necessary. There is also an expressed
need for training in the proper role of the Board in relation to
their corporate responsibilities.
Organizational Planning: As a general rule, directors of the
community based programs are too busy with day-to-day needs to plan
the development of the center and inadequately prepared to undertake
the task. A need expressed at the Conference was individual as well
as network support and training in the skills and techniques of
organizational development.
Personnel Management and Staff Development: Each participant of
the Conference recognized a major need existed in the area of
personnel management and staff development. The issues under
personnel management included personnel policies and affirmative
action, management skills, and development of adequate and appro-
priate job descriptions and pay rates. Other issues include staff
recruitment, training, and reasonable accommodation to ensure a
disabled person can undertake and carry out job duties. Staff
-38-
development includes training for individuals who have potential to
assume greater responsibilities, the use of interns, and the use
volunteers to develop individual skills through on-the-job training.
Fiscal Management: A major skill required of a non-profit
director is in the area of financial management. The Conference
participants recognized the necessity of maintaining proper fiscal
records and procedures. Support and technical assistance is needed
in order for directors to understand non-profit accounting
principles, cashflow management, and to acquire or train for the
skills and staffing needed to ensure the financial health of the
corporation is maintained.
Evaluation and Program Accountability: The community based
centers are faced with pressure to apply traditional evaluation and
case management techniques as well as accountability systems to
their services and advocacy programs. 57 However, it is recognized
by disabled leaders and professionals that these tools are inappro-
priate to the independent living programs. 58 The debate will
continue over the type of tools that are appropriate, but it is
recognized that such techniques and standards are necessary for the
future growth and development of the movement.
D. Service Delivery and Com unity Needs
The central focus in the development of the independent living programs has
been the provision and coordination of services that would enable an excluded
segment of the population to achieve independence. As programs increased in
understanding and sophistication, it was recognized that advocacy was a key com-
ponent to ensure community needs were met and individuals who received the
services would continue to develop added skills, self-reliance, and the ability
to move into the wider community.
The early programs developed to meet similiar goals but varied in the
methods and techniques of service delivery and advocacy. Service delivery
methods in a large urban area were not appropriate to rural areas. Differences
-39-
exist among urban areas according to the availability of public and/or private
transportation. Differences exist in population served based on racial and
cultural differences and disabilities. However, each program confronts certain
common problems that must be addressed.
In addressing community needs, programs face the dual issue of increased
demand for services and limited resources and delivery mechanisms. Within the
last five years, the concept of independent living has expanded from its initial
core constituency to a greater range of disability groups who desire access to
the services of an individual center. At the same time, centers are facing
limited resources and the need to establish priorities for service provision.
Further, in many communities, the existence of an independent living
program is an excuse for other social services groups not to serve the
individual and to refer him or her to the center. This occurs regardless of the
naturé of the problem; that is, it may be a legal or service need that has
nothing to do with the disability, but because the person is disabled he or she
is referred to the independent living program.
The Conference participants recognize the dual tensions facing each
program. They recognize that the movement must communicate the need for their
services and advocacy to the public and work to foster the development of
resources and skills necessary to meeting the needs of all disabled people who
desire the opportunity to live independently.
E. Public Relations, Education, and Community Support
An area of further concern raised by the Conference participants focuses on
the relationships with organizations and agencies outside the disability area
and the development of broad-based community support. Because the independent
living programs are both service providers and advocates for the rights of
disabled people in the community, their relationships with and ability to
educate the broader community are necessary for their individual survival and
the expansion and growth of the movement toward integration.
-40-
This area includes utilizing the media and public relations; developing
relationships with groups providing services and advocacy to other disadvantaged
groups; establishing contacts with and support from local and state officials;
and establishing contacts with and support from corporations, banks, and other
institutions within the community.
Conference participants recognize this need for their individual programs
and utilize varied approaches to communicate and develop supportive
relationships with the broader community. Specific programs often involve video
or slide presentations, speeches and meetings with local business clubs (i.e.
Rotary, Lions, Chamber of Commerce), participation in advisory boards, working
in coalition with other community groups on common issues affecting programs or
poor people generally, and meetings and education of decisionmakers in local,
state, and federal government.
It was apparent that each program must develop its approach and related
materials according to the specific program and the specific community.
However, it was recognized that this need could be met equally well by
dissemination and sharing of existing resources developed by individual centers;
by technical assistance and training in media use, public relations, and related
skills; and by technical assistance in resources and resource referral.
V. Achieving Independence: Future Options and Strategies
Independent living programs provide the grassroots representation, service
delivery, and advocacy which assure disabled persons a method of affecting and
determining their roles in the community and their rights to participate fully
in all the benefits the larger society offers all of its members. In the decade
since the initiation of independent living programs, their numbers have grown,
external support has multiplied, the numbers of severely disabled persons
assisted to become more fully independent in the community have increased
substantially, and their impact--both directly and indirectly-within their
immediate communities and at the state and national levels has resulted in major
attitudinal and policy changes.
-41-
Like other non-profit organizations, independent living programs have
developed skilled community leaders, managers, and program administrators,
provided on the job training and developed innovative and effective methods of
service. Unlike most nonprofit agencies, however, independent living programs
are at the core of the political and civil rights movement of the population
they serve. Their continued growth and survival, therefore, will play a
determining role in the success of the disability rights movement.
As pointed out above, the initiation and the growth of federal funding has
been a mixed blessing. Distribution of funds on a broad scale and lack of
agreement on the purpose and goals of independent living, combined with a
perceived lack of leadership credentials in the disability community, have
fostered the growth of programs which are only nominally controlled by disabled
persons. Lack of understanding of community based programs, a short start-up
period, and the recent recession set existing programs competing with new ones
in a time which has proved tumultuous for even long-established nonprofit
organizations. If federal funding were only a part of independent living
development sources, the pressure would not be SO great. The case, however, is
that only a few programs have other major sources of funding they can rely on,
and next to none have sources which provide the kind of financial latitude or
flexibility needed over the long term.
Alternative sources of funding, however, are not the only barriers to
successful program development. Independent living programs, as with the
broader disability rights movement, are young in age and in breadth of
experience. Several points can be drawn from this statement. First,
leadership and management of these programs have developed on the front lines -
hard experience gained through meeting service delivery needs or battling a
recalcitrant agency to make changes in policy or service guidelines. As stated
before, most program leadership developed as a result of pursuing a particular
service goal, e.g., availability or accessibility of noninstitutional housing,
pursuit of attendant care support, back-up services for disabled students, or
undertaking a needs assessment to encourage the development of service support
systems for adults in rural areas. As a result, many leaders have been caught
-42-
on the edge of change- without the chance to reflect on leadership skills,
leadership development, and planning. as Virtually none of the directors and few
of those who are now joining the ranks of former directors had exposure to the
breadth of demands all faced in the last several years.
delivery
of
At the current time, little exists to provide directors the support and
back-up needed to undertake agency leadership in such turbulent times. In terms
of seeking assistance from their peers, getting expert technical assistance from
others who understand their program goals, or formulating cross-program policy
and resources which will serve all programs with similar goals, they are at a
severe disadvantage. This is not to say that technical resources do not exist.
What is not in place are methods to access these, resources, either through
networking or through sufficient communications and flexible resources to make
the
assistance
available
here
are
both
for
A third point, however, must be made about the youthfulness of programs.
Independent living programs have been the leadership corps for the massive
disability policy change which has taken place over the last decade. As
leadership changes in the programs there are few options available in the
disability rights community for those who have developed management, political,
and advocacy skills and are leaving the independent living programs. The
broader disability rights movement has few resources to further make use of
these skilled individuals.
At the same time, little exists as an infrastructure to assist programs
with policy development, collection and dissemination of information, and
linkages of the independent living programs to other disability organizations
and civil rights and advocacy groups. Given funding, a clear match could be
made between these developed skills and growing needs for expert policy
development. What follows is a discussion of each of the major areas of action
recommended by the participants of the Independent Living Leadership Strategies
Conference. These recommendations address five major needs: (1) Support and
Technical Assistance in Operations and Management, (2) Development of
Strategies for Networking and Communications, (3) Leadership Development and
Training, (4) Research and Policy Development in Independent Living, and (5)
-43-
Long-Term Planning.
Outside
resource
Sist ibacion of funds to community based programs
A. Support and Technical Assistance in Operation and Management
As highlighted above, much of the initial conference discussion centered on
current day to day operational problems. While technical expertise exists to
assist programs, most directors focused on the fact that they often had neither
the time nor the resources to attend to long-term planning and management
solutions. What is needed is a technical assistance or support capacity which
might be organized on a regional or a state basis which could assist program
directors:
In identifying persons in the independent living movement who have
worked on similar day-to-day problems;
By providing on-site training and planning assistance to help them
solve current problems; and
and
By identifying particular issues which are causing problems and
developing solutions for independent living programs.
At the center of this need, however, is basic assistance, which could be
provided fairly simply. As noted, most independent living program staff have
had limited experience in organizational management. Packages of materials
which respond to agency needs would save many from "reinventing the wheel".
These packages would include: (1) a simplified accounting package which
deals with funds management, development of an indirect rate, and handling
multiple sources of funds; (2) a funding source document which organized service
support by program; (3) job descriptions for most basic positions common across
independent living programs; (4) reporting requirements for federal money; (5)
pay scales; (6) employee grievance procedures or unionization questions; (7) a
personnel policies guide; (8) job recruitment and search procedures; (9) selec-
tion and functioning of a board of directors as well as board relations and
training; (10) designing services, balancing services and advocacy, and roles of
peer counselors in counseling and advocacy; (11) structuring benefit packages -
particularly insurance variations; and (12) legal issues affecting the
organization's overall corporate integrity.
While these materials would not be needed by all programs, their
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availability would save much time and effort. Access to expert resources
recommended by other independent living programs would take programs a second
step.
Such a technical assistance resource system would cover the range of
short-term problems identified (e.g., funds management and funding development;
personnel development and management; management planning for service
development and advocacy; board selection and relations; and community rela-
tions). While it might begin as an externally-based system, the capabilities of
technology and existing expertise within programs could allow the development of
shared resources across programs through the development of a computer-based
system.
B. Need for Network Capability and Cross-Program Communications
The comments above demonstrate the need for a networking and communications
capability across programs which cannot be satisfied by occasional contact or
discussion at conferences or in regional group meetings. Clearly, coalitions at
the state level begin to satisfy this need, although the need to share
information on common issues and problems at the national level, particularly
for program leadership, is critical.
This need encompasses all areas: day-to-day management problems, common
accounting and reporting systems, for funding source information, legislative
development at the local, state and national levels, for recruitment and job
searching, innovative methods and adaptations, representation of independent
living programs at the national and state levels, on training programs and
leadership development options. Clearly, the fact that most of the directors
present at the Conference had not had a chance to meet previously on long-term
planning is apt testimony to this point. At present, this need is satisfied
only partially by: occasional travel and meetings through federal auspices, a
newsletter put out by ILRU and technical assistance, occasional reporting
through regional offices, updates from national organizations (most of which
deal with specialized information) and through beginning efforts of the emerging
National Coalition of Independent Living Programs.
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As identified by Conference participants, this need can be described at
three levels: the sharing of information across sites which might be used by
programs at will, networking and communication which requires discussion and
decisionmaking, and joint activity which will benefit all programs but could not
be done by any single site. Specific activities are as follows:
Level 1: Sharing of Information Across Sites/Picked Up at Will
The creation and maintenance of a National Job Bank -
identification of disabled persons and their skills, together
with a separate posting for available positions.
Sharing of Information on and Updating Individual Independent
Living Programs - reporting on recent activities of community
based independent living programs, including extension of service
to new client populations, successful community advocacy efforts,
and changes in law and guidelines.
Reporting of Developments in the Field - identification and
reporting of community coalitions, new applications of
technology, and new methods of fundraising.
Referral to Expert Resources - identification and site
evaluation by programs of consultants used, availability of
expert resource through newly funded projects, including
utilization of former Directors as experts.
Level 2: Networking and Communications Which Require Discussion
and Decisionmaking by Independent Living Programs
This activity requires direct involvement of independent living
program directors and assumes the representation of all programs
through an organizational entity, such as the National Coalition of
Independent Living Programs. Primary elements include the
following:
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Consensus Building on Priorities and Standard Setting --
includes policy development and definition of standards for
community based independent living programs, such as: the role of
non-disabled in independent living programs, the range,
philosophy, and delivery of services, the role of programs in
community, the relationship between programs and other community
institutions, and the role of the director as a disabled leader
in the community.
Development and Representation of Needs to the Public --
primary publics include the national media, foundation and cor-
porate funding sources, policymakers-in Congress, the Executive
Branch and the Courts—the general public, and professional
groups. Included here are both representation and the creation
of support for community based programs, such as public relations
campaigns, political response capacity, and outreach to funding
sources.
Development of and Assistance to New Programs --identifica-
tion of areas needing programs and identification, and
recruitment and training of potential directors.
Level 3: Joint Activity on Behalf of Independent Living
Beyond assistance to programs to carry on current activities, steps
must be taken to develop the capacity for programs to sustain them-
selves in the future and to move away from primary dependence on
governmental funding. Although these are long-term strategies,
planning and development activities must be undertaken by the
independent living programs jointly or by an organization or entity
representing the community based programs as a whole. Two primary
needs were identified at the Conference.
Consortium Funding - the creation of an entity of program
interaction which would not necessarily carry out programmatic
-47-
activities outside resource development, fundraising and
distribution of funds to community based programs.
Development of Alternate Methods for Program Support - the
primary option discussed under this heading was the development
of program-owned business ventures, although other options such
as partnerships with other organizations or collaborative ven-
tures, other fee for service activities, and shared resource
plans (health benefits packages, use of loaned executives) are
possible.
C. Leadership Development and Training
Critical to the development of community based independent living programs
is the recruitment and training of disabled persons to direct and staff existing
programs, start new programs, and take on broader leadership roles in the
community and in support of the goals of the independent living movement. At
the present time, most training takes place on the "front line" through expe-
rience, and to some extent through transfer to programs in other communities.
Because of the youth of the programs, disabled staff have not had access to the
many alternate forms of specialized training and experiences which allow the
development and maturity of leadership skills. More formal training programs
need to be developed which can assure programs of a cadre of capable staff to
carryout the broad range of responsibilities at the program level, and will
allow disabled persons to expand areas of current responsiblities.
The pattern of emergence of disabled community leaders has brought forward
persons immersed in location-specific problems. Little time has been available
to compare individual circumstances to other areas, or to sort out skills and
techniques which can be useful in broader areas. This grassroots training has
been critically important to producing self-trained and capable persons with a
shared experience and unique knowledge. As expressed by the Conference
participants, what is lacking is that broader set of experiences, relationships,
and exposures to enable them to hone their skills, broaden their capabilities,
and put to work in other ways the knowledge gained in solving their own
community problems. What is needed is a leadership development and training
-48-
plan encompassing the following objectives:
1. Training of Existing Program Directors and Staff in:
Fiscal and program management
Public and community relations
Legislative development and advocacy
Leadership and staff development skills
Fund development and fundraising
2. Recruitment and Training of New Leaders and Staff for
Programs:
Outreach to minority and underserved disability community
Training and outreach activities for development, recruitment
and program start-up of community based independent living
programs
3. Leadership Skill Enhancement for Existing Directors:
Training in public management and public policy
Development of internship and Fellowship opportunities to
enhance public policy and research and management skills, with
emphasis on state and national levels
Development of programs to allow short-term replacement of staff
for staff development programs
-49-
4. Leadership Programs for Directors and other Disabled Leaders to
Develop Capabilities for Linkage and Leadership Activities in
Major Generalist Policymaking Positions:
Internships and Fellowships for ILP leadership with
organizations involved in broader disability rights arena
Internships and Fellowships through major institutions to
enhance credentials of disabled leaders
Specific leadership skill programs to develop understanding of
public policy and management and translate the skills gained to
other arenas
D. Research, Policy Development, and Long-Term Planning
As long as community based independent living programs are continually
pressed by primary issues of program management, crisis advocacy and
stabilization of a funding base, there can be no focus on the major policy and
planning problems that continue to plague individual programs. This creates two
problems--the failure to solve issues which may prove to be their downfall, and
the cooptation of community based programs besieged by demands for
accountability from external sources. The fourth major area of focus for the
Conference is the need to develop a capacity internal to the disability rights
movement to carryout research, identify and develop policy options, and conduct
long-term planning.
For example, this capacity would include:
1. Policy Research and Development Activities Which Expand and Reinforce
the Process of Integration
- Attendant care programs on the state and national level
- Independent living models in rural areas
- Independent living models for mentally retarded individuals
- Employment disincentives in support programs
-50-
2. Research and Long-Term Planning for Independent Living Programs
- Development of a comprehensive plan for use of federal
resources in independent living
- Development of an effective evaluation method for community
based independent living programs
- Development of standards for community based independent living
programs
- Development of economic development options for community based
programs
- Collection of data on programs, their communities and their
impact
- Impact of technology on independent living
E. Long-Term Planning/Linkages to the Disability Rights Movement
Finally, this report ends where the initial project began: with the need
for concerted efforts at long-term planning to determine where the community
based independent living movement and the broader disability rights movement
should be in ten years.
Conference participants addressed the need to broaden long-term planning to
focus on the political environment, addressed linkages between community based
independent living programs and the disability rights movement, and linkages to
other groups representing disenfranchised populations. Specific issues which
must be addressed in these areas are the following:
Development of consensus on a plan and component steps to assure
the disability community as a whole achieves full participation in
society
-51-
Identification of the specific linkages which must be forged with
other groups to improve the probability of success in meeting this
goal (e.g., what can be learned from the history of other groups in
achieving participation and access to economic and political
equality)
Identification of specific activities to develop a political power
base within the disabled community to achieve full community
participation and integration into the social, political, and
economic system
Determination and communication of the steps the disabled community
must pursue in the area of civil rights policy in federal and state
government-including the courts and legislatures-to ensure
broader options of integration and choice
Examination of the impact that changes in technology, economic
development, and political and demographic forces will have on the
disability rights movement
*****
-52-
Appendix A.
1 Chris Palames, Director
Independent Living Resources
22 Lessey Street, #511
Amherst, MA 01002
Barry Bernstein, Former Executive Director
Vermont Center for Independent Living
174 River Street
Montpelier, VT 05602
Judy Heumann, Associate Director
World Institute on Disability
c/o 3025 Regent Street
Berkeley, CA 94705
2 See List of Participants - Appendix B.
3 DeJong, G. The Movement For Independent Living: Origins, Ideology; and
Implications for Disability Research, Paper presented at the Annual Meetings
of the American Congress of Rehabilitation Medicine, New Orleans, LA,
November 17, 1978 at 33. (hereinafter DeJong, The Movement).
4 E.g. Frieden, Lex, Independent Living Models, Rehabilitation Literature,
Vol. 41, No. 7-8, July-August 1980, at 170. (hereinafter Frieden).
5 DeJong, The Movement, supra note 3 at 34.
6 See DeJong, Independent Living: From Social Movement to Analytic
Paradigm, Archives of Physical Medicine and Rehabilitation, Vol. 60., October
1979, 435-446. (hereinafter DeJong, Independent Living) See also Hahn, H.,
Disability and Rehabilitation Policy: Is Paternalistic Neglect Really
Benign? Public Administration Review, July/August 1980 at 385-389.
7 See Frieden, supra note 4.
8 See Appendix C, Philosophy.
9 See Frieden, supra note 4 at 170.
10 DeJong, G., The Historical and Current Reality of Independent Living:
Implications for Administrative Planning, Policy: Planning and Development in
Independent Living, University Center for International Rehabilitation,
Michigan State University, June 1980. (hereinafter DeJong, Policy at 170).
See also DeJong, The Movement, supra note 3.
11 See Frieden, supra note 4; DeJong, Independent Living, supra note 6;
Hahn, supra note 6.
-53-
12 See Frieden, supra note 4 at 170, 171.
13 Id.
14 Id.
15 See e.g., Funk, R. Law Reform in Disability Rights: Articles and Concept
Papers. Volume I, A-1, A-50. Disability Rights Education & Defense Fund,
November 1981; DeJong, The Movement supra note 3.
16 DeJong, The Movement, supra note 3 at 20.
17 Architectural Barriers Act of 1968, 42 U.S.C. S4151 et. seq.; Urban
Mass Transportation Act of 1964, as amended, 49 U.S.C. S1612; Federal Aid
Highway Act of 1973, 29 U.S.C. 142.
18 P.L. 93-112; P.L. 93-602, 29 U.S.C. S702, (Supp. II 1978).
19 29 U.S.C. S794, (Supp. II 1978).
20 29 U.S.C. S792, (Supp. II 1978).
21 29 U.S.C. S791, (Supp. II 1978).
22 29 U.S.C. S793, (Supp. II 1978).
23 The Education Acts of 1974 and 1975, 20 U.S.C. S1401, et.seg.
24 Developmentally Disabled Assistance and Bill of Rights Act of 1975, 42
U.S.C. S6001 et.seq.
25 White House Conference on Handicapped Individuals Act, 29 U.S.C. S70 in
(December 7, 1974).
26 See DeJong, Independent Living, supra note 6, 435-446.
27 See "Oversight Hearings on the Rehabilitation Act of 1973" before
Subcommittee on Select Education of the House Committee on Education & Labor,
January 5, 1979, at the Center for Independent Living, Berkeley, CA.
28 See discussion infra at (IV) (B) (3) and footnote 48.
29 Federal initiatives in independent living had been attempted as early as
1959. Consumer advocates and rehabilitation professionals, recognizing that
traditional rehabilitation services were not being made available to large
numbers of severely disabled people because they were not deemed "employ-
able," persuaded Congressional supporters to introduce independent living
legislation in 1959, 1961, and 1973. In each instance, the independent
living legislation was not enacted. DeJong, Independent Living, supra note
6 at 437. See also Burton, L. Law Reform in Disability Rights: Articles
and Concept Papers (Vol. 1, B-11, B-13, (November, 1981).
30 P.L. 95-602, S122 (a) (b) (c); 29 U.S.C. S706, (7) (Supp. II 1980).
-54-
31 See e.g., DeJong, Independent Living, supra note 6.; "Oversight
Hearings," supra note 27.
32 By fiscal year 1982, 135 centers for independent living were being funded
under Title VII; Testimony by George A. Conn, Commissioner, Rehabilitation
Services Administration before the Committee on Labor and Human Resources,
Subcommittee on the Handicapped, U.S. Senate, February 24, 1983.
33 DeJong, Independent Living, supra note 6 at 438. See also DeJong,
Policy, supra note 10.
34 See DeJong, Independent Living, supra note 6 at 438; DeJong, Policy,
supra note 10 at 3.
35 See DeJong, Policy, supra note 10 at 6.
36 Id.
37 See e.g., Implementing Independent Living Centers: Conference
Proceedings, Edited by G. Timothy Milligan, Arkansas Rehabilitation Research
& Training, 1981; Policy: Planning and Development in Independent Living,
University Center for International Rehabilitation, Michigan State University
June 1980.
38 Chadderdon and Malhotra, "Independent Living Centers Have Funding
Problems," The Interconnector, University Center for International
Rehabilitation, Michigan State University, Vol. VI, No. 1, (1982) at 10.
(hereinafter Chadderdon).
39 Id.
40 Supra note 32.
41 Chadderon, supra note 38.
42 P.L. 95-602, S (a) (b) (c); 29 U.S.C. S 706, (7) (Supp. II, 1980)
43 Part A of Title VII is designed to provide subsequent direct service monies
through state agencies for the delivery of independent living services by the
independent living centers. Part C is designed to fund services to the
elderly/ blind, and Part D to fund protection and advocacy services.
44 See Hahn, supra note 6.
45 See e.g., DeJong, Policy, supra note 10 at 6.
46 See discussion of conflict at text following footnote 31.
7
47 See discussion of community-responsive role of centers in text following
footnote 12.
48 In each state, there are groups that undertake education, research,
organizing and advocacy activities based on civil rights principles and
strategy. These groups do not provide health or social services, but utilize
their skills and resources to foster change in the broader social, political
-55-
and economic community in order to ensure the empowerment and integration of
disabled adults and children. These groups include, among others,
federally-funded state protection and advocacy offices providing legal
assistance and education for developmentally disabled persons; parent-run
coalitions and networks; broad-based disability rights groups with direct
roots in community based independent living centers; and organizations
established by and for mentally retarded and mentally disabled persons.
For example: Disability Rights Center, Washington, D.C.; Disability Rights
Education and Defense Fund, Berkeley, California and Washington, D.C.;
Disability Rag, Louisville, Kentucky; National Parent CHAIN, Giles, Illinois;
and People First, Marin, California.
49 See DeJong, Independent Living, supra note 6 at 435.
50 Id.
51 Id. at 435-436; See also Socio-economic Status of Disabled People in the
United States, Disability Rights Education and Defense Fund, August 1982.
52 Id.
53 E.g., issues involving Social Security, Voting Rights Act for
Disabled and Elderly.
54 Supra notes 19 and 23.
55 See e.g., DeJong, Independent Living, supra note 6 at 445.
56 Id.
57 See DeJong, Policy, supra note 10 at 6.
58 See Milligan, supra note 36; article by Muzzio, T., "Program Evaluation for
Independent Living Programs" at 54.
-56-
Appendix B.
THE INDEPENDENT LIVING LEADERSHIP STRATEGIES CONFERENCE
KELLOGG CENTER FOR CONTINUING EDUCATION
JULY 25 - JULY 30, 1982
Participants*
BARRY BERNSTEIN**
Executive Director
Vermont Center for Independent Living
174 River Street
Montpelier, Vermont 05602
(802) 229-0501
BARBARA BRADFORD
Director
Disabled Citizens Alliance for Independence
Box 675
Viburnum, Missouri 65566
(314) 244-5402
MARCA BRISTO
Director
Access Living of Metropolitan Chicago
Rehabilitation Institute of Chicago
505 N. LaSalle
Chicago, Illinois 60610
(312) 649-7437
BERNIE CANTU**
Director
San Antonio Independent Living Services
1222 N. Main
Suite 11-36
San Antonio, Texas 78212
(512) 226-0054
CHARLES CARR
Director
Northeast Independent Living Center
429 Broadway
Lawrence, Massachusetts 01840
,
(617) 687-4288
PAT FIGUEROA**
Executive Director
1
Center for Independence of the Disabled
in New York
853 Broadway, Room 611
New York, New York 10003
(212) 674-2300
-57-
LEX FRIEDEN
Project Director
Independent Living Management Project
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
P.O. Box 20095
Houston, Texas 77225
(713) 797-0200
ROBERT FUNK
Director
Disability Rights Education and Defense Fund
2132 San Pablo Avenue
Berkeley, California 94702
(415) 644-2555
JUDY HEUMANN**
Special Assistant to the Director
Associate Director
California State Department
World Institute of Disability
of Rehabilitation
3025 Regent Street
830 K Street Mall
Berkeley, California 94705
Sacramento, California
(415) 849-4576
(916) 445-3971
GINI LAURIE, Observer
Publisher/Editor
Rehabilitation Gazette
4502 Maryland Avenue
St. Louis, Missouri 63108
(314) 361-0475
JEAN MANKOWSKY**
Program Director
Executive Director
Vermont Center for Independent
Vermont Center for Independent
Living
Living
174 River Street
174 River Street
Montpelier, Vermont 05602
Montpelier, Vermont 05602
(802) 229-0501
(802) 229-0501
MICHAEL MOORE, Facilitator
Professor of Organizational Behavior,
Personnel Management and
Industrial Relations
Michigan State University
4351 Wausau
Okemos, Michigan 48864
(517) 349-4070
CHRIS PALAMES
Director
Independent Living Resources
22 Lessey Street, #511
Amherst, Massachusetts 01002
(413) 253-7173
-58-
TERESA PREDA
Director, HAIL
1249 East Calfax
Suite 107
Denver, Colorado 80218
(303) 623-6946
JOHN ROSS
Director
Metrolina Independent Living Center
N.C. Division of Vocational Rehabilitation
909 S. College Street
Charlotte, North Carolina 28202
(704) 375-3977
LYNNAE RUTILEDGE**
Director
Center for Hadicapper Affairs
1026 E. Michigan Avenue
Lansing, Michigan 48912
(517) 485-5887
TONY SERRA**
Director
Erie County Office for the
Western N.Y. Independent
Disabled
Living Project
Room 670, Rath Building
3108 Main Street
95 Franklin Street
Buffalo, New York 14214
Buffalo, New York 14202
(716) 836-0822
(716) 846-6233
MAX STARKLOFF
Executive Director
Paraquad, Inc.
4397 Laclede Avenue
St. Louis, Missouri 63108
(314) 531-3050
MARIAN BLACKWELL STRATTON, Conference Recorder
Disability Rights Education Defense Fund
2032 San Pablo Avenue
Berkeley, California 94702
(415) 644-2555
MICHAEL WINTERS**
Executive Director
Executive Director
Hawaii Center for Independent Living
677 Ala Moana #402
Center for Independent Living
2539 Telegraph
Honolulu, Hawaii 96815
(808) 537-1941
Berkeley, California 94704
(415) 841-4776
-59-
RAY ZANELLA
Co-director
Community Services Center for
the Disabled
1295 University Avenue
San Diego, California 92103
(619) 293-3500
PROJECT STAFF
LISA WALKER
MARGOT GOLD
Vice President
Conference Coordinator
Institute for Educational Leadership
P.O. Box 6
1001 Connecticut Avenue, N.W.
Ray Brook, New York 12977
Washington, D.C. 20036
(518) 891-5946
(202) 822-8716
*Note that titles and addresses used throughout this Appendix are for
positions at the time of the meeting. Participants who have changed
positions are indicated by **. New addresses have been included for those
who have moved to independent living/disability rights programs.
-60-
Appendix C.
Preamble and Goals
Among the foundations of our society is the acceptance of certain fundamental
human rights. Independent Living is based on the belief that all individuals,
including those with disabilities, shall have an equal opportunity to exercise
those rights. The independent living movement shall affirm the basic human
rights of disabled persons:
To participation in the prerogative and responsibilities of citizenship
To equal employment opportunities
To access to public facilities, transportation and affordable housing
for all disabled people
To the supportive services necessary for employment opportunities, and
full participation in society
To free, appropriate and non-segregated education
To bear, raise and adopt children
To full participation in the cultural, social, recreational and
economic life of the community
To live in dignified independence outside of institutional settings
I. Services
1. Advocacy (benefit counseling)
2. Peer counseling
3. Housing assistance
4. Personal care attendant referral (specialized services)
5. Reader services/intepreters services/TTY-relay
6. Independent living skills training
7. Information and referral
8. Community education
9. Transportation
10. Legal assistance
11. Sexuality counseling
12. Recreational and leisure activities
13. Outreach
14. Equipment repair, loan and counseling
15. Services for development to achieve full human potential
II. Population and Disablilty
All segments of society shall be served.
-61-
III. Service Delivery
We affirm that because of the major importance that independent living
services play on the lives of disabled people, independent living
programs and services shall be controlled by and reflect the needs of the
disabled community.
IV. Role of non-disabled in independent living movement
Non-disabled people shall not be at the forefront of the movement.
V.
Relationship of independent living movement to civil rights
movement
The independent living movement, as a direct result of the disabled
people's civil rights movement, shall continue to supporty and provide
leadership.
IV.
Principles
1. Right to exist
2. Self-directing (individual designs services)
3. Non-medical
4. Integrationist
5. Right to choice
6. Self-determination
7. Non-residential
8. Civil rights and advocacy oriented
9. Community-based (community responsive/oriented)
10. Right to fail
11. Service with dignity
12. International human movement
13. Non-sexist and non-racist
14. Non-sectarian
15. Without regard to economic or social class
16. Non-traditional (in housing and approach)
17. Without regard to age
18. Promoting a positive and dignified image of disabled people
VII. Organizing and Coalescing
We shall encourage the development of independent living programs and
organizations on the local, state, national and international levels that
embrace the philosophy of the independent living movement heretoforth
stated.
VIII. Ideological Leaning
Progressive thought that is dedicated to developing a peaceful and
humanitarian society.
-62-
IEL BOARD OF DIRECTORS
Robert Andringa
Anne Lindeman
Executive Director
State Senator, Arizona
Education Commission of the States
Floretta D. McKenzie
Jack R. Borsting
Superintendent
Dean of the Business College
D.C. Public Schools
University of Miami
Matthew Prophet
Jerry Calhoun
Superintendent
Deputy Assistant Secretary of
Portland Public Schools
Defense
Blandina Cardenas-Ramirez
Martha E. Church
Director of Training
President
Intercultural Development
Hood College
Research Association (IDRA)
Luvern L. Cunningham
Lois Rice
Novice G. Fawcett Professor
Senior Vice President
of Educational Administration
Government Affairs
Ohio State University
Control Data Corporation
Arthur M. Dubow
Bernice Sandler
President
Executive Associate and Director
The Boston Company Energy
Project on the Status and
Advisors, Inc.
Education of Women
Association of American Colleges
Samuel Halperin
Senior Fellow, IEL and
Donna Shalala
Fellow, Institute for
President
Federal Studies
Hunter College
Dean Honetschlager
Richard C. Snyder
Director
President
Office of Human Resources
Civic Education Association
Planning
Minnesota Department of Energy,
Arthur White
Planning and Development
Senior Partner
Yankelovich, Skelly and White,
Harold Howe, II
Inc.
Senior Lecturer
Harvard University
SENIOR STAFF OF THE INSTITUTE
Michael D. Usdan, President
Lisa Walker, Vice President
Elizabeth Hale, Director, Education Policy Fellowship Program (EPFP)
Barbara McCloud, Associate Director, EPFP; Coordinator,
Superintendent's Roundtable
Jacqueline Danzberger, Director, Work and Education Programs
Priscilla Hilliard, Associate Director, Work and Education Programs
Rafael Valdivieso, Senior Associate and Director of Educational
Programs, Hispanic Policy Development Project, Inc.
Harold Hodgkinson, Senior Fellow
John May, Treasurer
Louise Clarke, Administrative Coordinator
John Rankin, Executive Assistant