> REPORT TO THE PRESIDENT

The National Reform Agenda and Citizens with Mental Retardation: A
Journey of Renewal for All Americans

> U.S. Department of Health and Human Services Administration for
> Children and Families
>
> President\'s Committee on Mental Retardation Washington, DC

1994

April 19, 1995

The President

The White House

Washington, D.C. 20500

Dear Mr. President:

I am pleased to introduce to you the 1994 Annual Report of the
President\'s Committee on Mental Retardation (PCMR) entitled [The
National Reform Agenda and Citizens with Mental Retardation: A Journey
of Renewal for All Americans]{.underline}.

The Report reflects the contributions of 26 self-advocates, parents and
family members who as experts in the area of mental retardation,
collaborated with professionals in the field and Federal and State
partners to produce this Report. It includes recommendations made within
the context of welfare and health care reform and more broadly,
recommendations that reflect the principles of empowerment, equality and
justice.

This document, authored by Dr. Glenn Fujiura of the University of
Illinois at Chicago, emanates from the 1994 PCMR Presidential Forum
which produced a new vision for Americans with mental retardation and
their families. The recommendations provide an ambitious outline for
action which reflect the dedication and commitment of the Committee
members in meeting their responsibility to work as advocates for persons
with mental retardation.

Included in this report is a quote from Linda Preston about her son
Elijah, \"\...They didn\'t see his disability. They just saw the music
in him.\" It is within the spirit of Linda Preston\'s dreams for her
son, and on behalf of the dreams of my fellow Americans who confront
mental retardation and related disabilities daily, that I offer this
report for your consideration.

Sincerely,

Donna E. Shalala

Enclosure

> **TABLE OF CONTENTS**

Acknowledgements

Preface

Introduction

Part I: A promise not fully realized

Part II: The new American community

> School
>
> Home
>
> Work

Part III: The dignity of our citizen

> Health
>
> Welfare
>
> Long-Term Care

IV Epilogue: Putting People First

Appendices

> President\'s Committee on Mental Retardation Members & Staff April
> 1994 Forum Advisory Planning Committee

ACKNOWLEDGEMENTS

The President\'s Committee on Mental Retardation (PCMR) gratefully
acknowledges the insight and perceptive analysis of Glenn Fujiura,
Ph.D., University of Illinois at Chicago, Institute on Disability and
Human Development, who authored the Committee\'s 1994 Annual Report to
the President.

The Annual Report and the Proceedings of the 1994 Presidential Forum,
which served as the basis for the Report, were unique in many respects.
Reflecting President Clinton\'s commitment to empowerment and inclusion
of all Americans, this Report is historic through the active
participation and leadership of many self advocates and parents whose
dynamic contributions helped shape the tone of each of the PCMR
recommendations. The President\'s Committee would particularly like to
acknowledge the contribution of the 26 self-advocates who were active
participants at the Presidential Forum. The Committee is especially
grateful to T.J. Monroe of Nashville, Tennessee, and Tia Nelis of
Naperville, Illinois, who were Forum Keynoters, along with parent
advocates Koquese Collins of Detroit, Michigan, Dawn and Don Merriman of
Salina, Kansas, and Linda Charlton of Bel Air, Maryland. The passion,
love, and clarity of mission articulated by both parent and
self-advocate participants helped guide every discussion held at the
Forum.

In composing the Report to the President, Dr. Fujiura was greatly aided
by the contributions, writings, and technical papers of the PCMR Forum
Advisory Committee and Workgroup Leaders including William E. Jones,
Ph.D., Executive Director of the American Association of University
Affiliated Programs, chair of the PCMR Forum Advisory Committee and
members: Kathy Beyer; David Braddock, Ph.D.; Sharon Davis, Ph.D.; Steve
Eidelman; Rob Homer, Ph.D.; Matthew P. Janicki, Ph.D.; K. Charlie Lakin,
Ph.D.; David Mank, Ph.D.; Paul Marchand; Jan Nesbit, Ph.D.; Sharon
Ramey, Ph.D.; Frank Rusch, Ph.D.; Marsha Seltzer, Ph.D.; Steve Taylor,
Ph.D.; Alexander J. Tymchuk, Ph.D.; and Paul Wehman, Ph.D.

The Committee also wishes to express its appreciation for the leadership
and guidance of Administration for Children and Families (ACF) Assistant
Secretary, Mary Jo Bane; and Deputy Assistant Secretary for Policy and
External Affairs, Ann Rosewater.

Additionally, the PCMR would like to express its deepest gratitude to
Elizabeth Boggs, Ph.D., and Gunnar Dybwad, Ph.D., not only for their
technical writings and expertise, but also their inspiration, wisdom,
and lifelong commitment to inclusion and justice for individuals with
mental retardation and related developmental disabilities.

PREFACE

In April 1994, leaders from the field of mental retardation were
gathered together in a forum sponsored by the President\'s Committee on
Mental Retardation (PCMR). They were asked to evaluate the needs of
Americans with mental retardation in the context of the
Administration\'s domestic reform agenda. The [Report to the
President]{.underline} represents the synthesis of the forum\'s
technical papers, deliberations, and analyses in the areas of education,
housing, employment, health, welfare, and long-term care. Three core
themes bind together the sections of the narrative and accompanying
recommendations.

First, there remain great unmet needs. A-significant transformation in
the nation\'s care and treatment of its citizens with mental retardation
has occurred. However, it is a transformation yet in progress. The
report reflects the tension of the juxtaposition of accomplishments
against the sense of urgency for critical tasks yet to be completed. For
too many Americans with mental retardation, the reforms of the past
three decades are merely unfulfilled promises. This is a central theme
for the report\'s discussion of education, housing, and employment.

Secondly, the real revolution will see the end of the premise of
dependency that permeates our systems of care and support. This theme is
embedded in key concepts throughout the report \-- in the principles of
choice and control, in the view of persons with mental retardation as
citizens and constituents, and in the calls for meaningful inclusion.

The third and final theme is the fundamental importance of individual
dignity. It lies at the heart of report\'s discussion of health care,
welfare, and long-term care. The report\'s recommendations are made
against the backdrop of changes in the landscape of American governance
since the April meetings. While we understand there are no convenient
and readily implemented solutions for these domestic reform challenges,
the needs and injustices described in the report will be as pressing
tomorrow as they are today. For Americans with mental retardation,
domestic reform must remain on the agenda.

**REPORT TO THE PRESIDENT**

The National Reform Agenda and Citizens with Mental Retardation:

A Journey of Renewal for All Americans

*The President\'s Committee on Mental Retardation*

**INTRODUCTION**

We stand at a crossroad in the nation\'s passage into the 21st century.
Long-standing assumptions about the relationship of government and
citizen in health care, education, employment, and social welfare are
being challenged.

The choices made in this national debate will have profound implications
for persons with mental retardation. They are among the most vulnerable
of American citizens. Like a mirror held before the national renewal
effort, the success of reform will be reflected in their lives and
well-being.

In the body of the following report, PCMR endeavors to chart the
direction of future activities, policies, and strategies for Americans
with mental retardation in the context of the President\'s reform
agenda. The assessment represents a distillation of the deliberations
and recommendations of leaders in the field of mental retardation during
a 3-day PCMR forum in 1994.

I.  **A PROMISE NOT FULLY REALIZED**

*\"Our goals for Katie include wanting her to feel loved, to give her a
sense of high self-esteem so that she can experience life with
confidence. She is a very social child and while I think she has a great
capacity to make friends, I wonder how other children will accept her.
We envision her attending public schools and one day hope to see her
graduate from high school. I wonder if she will ever get married, and if
she doesn\'t, I hope someday she has a companion to enjoy life with, and
if we could we would like to see her remain as happy as she is today.
\"*

Linda Charlton, Maryland

In her address to the PCMR, Linda Charlton described life with her
2-year old daughter, born with Down syndrome. She spoke of her goals and
anxieties over what the future holds. In Linda Charlton\'s statement is
the eloquence of parental love and the aspirations of families
everywhere \-- that our children find opportunity, dignity, and above
all, love.

The nation Katie was born into two years ago is far different for
Americans with mental retardation from that first described by PCMR in
1967 in its inaugural report, [MR 67]{.underline}. The Committee spoke
then of the need to provide education, to improve the quality of
institutions, to offer rudimentary services in the community, and to
grant persons with mental retardation the elementary rights of
citizenship.

The Federal Government responded and transformed national policy \--
with prohibitions against discrimination on the basis of disability
through the Rehabilitation Act of 1973 and the Americans with
Disabilities Act of 1990, educational mandates in the Education for All
Handicapped Children\'s Act and its amendments, and the institutional
reforms and community expansion brought about through Federal
legislation and precedent-setting litigation in the Federal courts.

The transformation of national policy affecting people with mental
retardation over the past 25 years represents one of the great social
reform movements of our time. Policies are now in place at the Federal
level that affirm the basic rights and fundamental human dignity of
Americans with mental retardation.

And yet, great needs still exist. Aspirations are unfulfilled. Elisha
Preston was born 12 years after the publication of [MR 67]{.underline}.
His mother reflected on the hopes expressed by Linda Charlton \-- \"I
remember taking walks with Elisha when he was an infant. Like any new
parent I engaged in lots of idle thought about the future.

Those were times of great expectation. I said the same things as
Katie\'s mom. And a decade later my son has had the sweetness and
kindness and joy sapped from him by a system and community that has done
little but put barriers before him. It makes me want to cry.\"

Real change and true reform require national leadership. President
Clinton proposed a \"journey of renewal.\" In this report, we point out
the ways in which this journey will affect Americans with mental
retardation. We respectfully ask for your consideration of these
recommendations -­- recommendations that will transform promises into
reality.

**II. THE NEW AMERICAN COMMUNITY: OUR SCHOOLS, HOMES,**

**AND PLACES OF WORK**

The injustices experienced by people with mental retardation were great
in 1967. One half of the nation\'s 25,000 school districts denied access
to children with mental

retardation. State-operated institutions, at their peak census of nearly
200,000 residents, were the primary housing option. And the concepts of
employment and self-sufficiency were hailed as \"revolutionary\" in
PCMR\'s inaugural report of that year, which spoke of new ideas and
fresh approaches.

Our greatest challenge remains the infusion of new ideas \-- ideas that
will change, fully and irrevocably, the basic paradigm. Based on
exclusion, isolation, and individual

deficits, the old service model still stands as an obstacle to true
reform. The emerging paradigm is anchored to the values of inclusion,
collaboration, and individual determination. Through the
Administration\'s domestic reform agenda, we have the unique opportunity
to realize this new vision in the following areas:

-   Special education in the United States is a paradox of intent and
    effect. In order to redress the inequities created by the exclusion
    of children with a disability from public school, policy-makers
    inadvertently created a system predicated on segregation. Special
    education\'s status as a parallel system must be challenged.

-   Since 1967 the nation has reduced its reliance on institutional care
    while dramatically increasing community-based housing. Yet the
    fundamental premise of residential care remains unchanged \--
    persons with mental retardation are the \"occupants\" of beds and
    \"clients\" of services. We must challenge this premise of
    dependency.

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-   The success of integrated employment \-- real work in real jobs \--
    is in its acceptance as a true goal for persons with mental
    retardation. Unfortunately, it is treated as only one alternative
    along the continuum. We must commit ourselves, totally and wholly,
    to a vision of equal opportunity in the work place.

-   School, housing, and work have been targets of reform efforts since
    [MR 67]{.underline}. In 1967 the preeminent concerns focused on
    access to public schools, quality of care in the state-operated
    institutional system, and lost employment potential. While these
    continue to be points of concern, the mix of issues is far more
    complex today. It is no longer solely a matter of where to locate a
    service, but rather how to redress the balance of power and choice
    in the service provider-consumer relationship.

*We are a nation of individuals bound together by the vision of
community and the sense of purpose defined by our citizenship and what
America uniquely represents. PCMR\'s report to the President is based on
this fundamental assumption.*

What matters most to people with mental retardation and their families
is that which is of importance to all Americans -­to belong to a larger
community that endows its members with dignity anchored in a fundamental
respect for the individual. We hope that this aspiration, though not
fully realized, will find fuller voice in the reforms proposed by the
Clinton Administration.

**SCHOOL**

*\"I do not want the \"retarded corner\" of the school. \"* Linda
Preston, Illinois

The adoption of the Education of the Handicapped Act eliminated the
exclusion of children with mental retardation from public education. It
also created a \"special education\" system that is separate both in
operation and philosophical foundation. This contrived separateness
limits opportunities for those within it, and perpetuates inequities and
inefficiencies.

The fundamental goal is unchanged from the early years of mandates \--
equity in education. Yet the status of education for children with
mental retardation is startling in its disparities. Only seven in 100
students with mental retardation spend their school day in classrooms
with other children from their neighborhoods. Eleven out of every 100
students do not have access to their community school, attending totally
non-inclusive schools.

*The basic premises and character of our dual system of education are
found to be wanting. It is time to act.*

At the heart of the debate is the contemporary utility of the dual
system. Does the division of children \-- into those who have a
disability and those who do not \-- continue to serve an educational
purpose?

Segregation does not enhance academic achievement and delays social
adjustment. It encourages unnecessary labeling of children. It fosters
placement on the basis of administrative convenience rather than
educational need. How else to explain the arbitrariness of segregation
\-- that only 35 percent of Vermont\'s students are educated in separate
classrooms compared to 97 percent in Iowa. Why should a special
education student in Alabama be eight times more likely to be labeled
\"mentally retarded\" than one in Arizona or New Jersey? Why should an
African-American child in the special education system be twice as
likely as a white child to be classified as having mental retardation?

Segregation requires the classification of children in order to
communicate their \"deficits\" and to demand narrow instructional
specializations of their teachers. What has this classification and
specialization achieved? Dropout rates from special education exceed the
national average. Post-secondary school unemployment rates approach 50
percent three to five years after leaving school. The segregated system
fostered critical access to education in the early years of the
mandates, but it bought neither quality nor equity.

Assumptions of the past often obstruct alternative visions of the
future. For students in need of specialized education, we must revisit
previous assumptions about where those services are delivered.

**PCMR RECOMMENDATIONS: OUR SCHOOLS**

The United States achieved access for children with mental retardation.
Doors were opened and obstructions overcome. But access has not
necessarily translated into equality of education nor quality of
outcome. PCMR respectfully requests that you reaffirm the principle of a
unified educational system and an end to Federal support for separation.
We must unify education for all our children.

**THE FEDERAL GOVERNMENT MUST AFFIRM THE PRINCIPLE OF A UNIFIED
EDUCATIONAL SYSTEM**

-   **End the fiscal barriers to inclusion**. Eliminate fiscal
    incentives for dual systems. Link Federal funds authorized under The
    Individuals with Disabilities Education Act (IDEA) to total state
    school population rather than the number of labelled students.

-   **Let the children come home**. Eliminate fiscal incentives for
    out­of-district placements. Federal funds authorized under P.L.
    89-313 should be directly linked to each child\'s home school
    district.

-   **Provide a Federal vision**. Unify and apply the reform agenda
    across Federal agencies. Federal agencies involved in education
    should coordinate their training, research, policy, and technical
    assistance missions. The U.S. Department of Education\'s Office of
    Special Education and Rehabilitation Services (OSERS) should make
    placement-neutral and non-categorical reimbursements to local
    agencies a requirement of state plans.

-   **Set the agenda**. The Federal government should leverage its
    influence to effect system change. Set the research agenda on
    unification and inclusion, evaluate the effectiveness of teacher
    education curricula to facilitate inclusion, and de-emphasize the
    labeling of \"special education\" teachers in personnel preparation
    efforts. Put teeth into the Federal monitoring process. Establish
    meaningful sanctions for non-compliance.

**HOME**

*\"People need to have control of their front door. \"* T.J. Monroe,
Nashville, TN

*PCMR recognizes the moral and legal rights of persons with mental
retardation to experience and shape their lives as citizens and as
individuals, including the most fundamental right \-- to decide where
and with whom they will live.*

Rare is the person with mental retardation who experiences \"home\" as
do most Americans. Beyond the family home, the major housing
alternatives are institutional and other group facilities owned and
controlled by others, with people they never chose to live with. They
are denied the experience of a \"place of one\'s own\" \-- an aspiration
common to all Americans.

Contemporary options are still largely limited to \"homes\" that are
owned or leased by states, private organizations, foster care programs,
board and care providers, or non-profit housing corporations. While we
speak of dignity, rights, and inclusion, the sobering fact is that most
people with mental retardation living away from their family homes are
under the control of other people. Basic models of care are predicated
on dependence and the absence of choice.

Owning or renting a home of their own choice (excluding those living in
their family home) is currently limited to 8.4 percent of the 347,000
persons with mental retardation receiving services. For the vast
majority of people with mental retardation, housing and support services
are bundled as \"packages\" based on group considerations and agency
preferences rather than individual needs. The individual in need of
supports is often compelled to live in settings where the needed
services are provided or, conversely, to receive unnecessary care in
exchange for residential support.

Recognition of the consumer\'s right and capability of home ownership is
not without basis in recent experience. People with mental retardation
can and do own and rent their own homes all through the U.S. Though
little used to date, this is the most rapidly growing type of
residential option. In localities across the nation, innovative funding
options are being implemented. State governments, including Colorado,
Connecticut, Florida, Illinois, New Hampshire, Michigan, New York, Rhode
Island, and Vermont, have developed innovative financial assistance
programs for cash assistance, leases, rent subsidies, and vouchers.

David Guillet just purchased a condominium in Cumberland, Rhode Island.
Formerly a resident of group homes, he, together with his parents, Marge
and Lou, were pioneers in the development of home ownership options in
the State. Through a collaborative effort of state agencies, they
obtained a low-interest mortgage and a grant for the down payment,
closing costs, and furniture. Compared to publicly­ funded group homes,
often with service packages that are not needed and associated staffing
expenses, home ownership may be less expensive.

\"My son has very severe disabilities,\" said Mrs. Guillet,
\"quadriplegic, legally blind, with severe seizures. Yet, I have the
same fears for David as I do for my other children who do not have
disabilities. We are helping David expand his relationships by
introducing David to the fire department, to his immediate neighbors, by
holding an open house. The neighbors were wary, assuming the State had
purchased the condo. Their perceptions immediately changed when they
found out that David was the owner, not some \"ward\" of the State.

\"We have choices now. We pick the support staff. David has complete
control of the choices in his life. David can eat what he wants to eat,
when he wants to eat. If he wants to wear a blue shirt with green
shorts, that\'s OK. I can see the difference in his eyes. \"

The great challenge is to see beyond current service paradigms. Many
people with mental retardation who receive residential services live in
housing in which services and personal assistance are developed around
group considerations and agency preferences rather than individual needs
and choices. People with mental retardation are often wrongly viewed by
government agencies and service providers as needing \"special
housing,\" rather than as individuals with idiosyncratic needs for
support.

Changes in Federal policy will be crucial to the development of
consumer-controlled housing. The Federal Government has considerable
leverage through its housing programs, income support policies, and
public information efforts. Through modifications of these programs, the
Federal Government can play an affirmative, leading role in housing
reform for people with mental retardation.

**PCMR RECOMMENDATIONS: OUR HOMES**

Twenty-seven years after the onset of deinstitutionalization in 1967, we
continue to house an unconscionably large number of American citizens in
large non inclusive settings. Residential housing and financing models
across the range of residential options remain largely predicated on
institutional concepts of care and training. We recommend that the
Federal Government should affirm the principles of choice and control in
housing policy for people with mental retardation.

THE FEDERAL GOVERNMENT MUST AFFIRM THE PRINCIPLES OF CHOICE AND CONTROL

Separate housing from supports. People should have stable homes while
fully exercising their right to choose the agencies and individuals who
enter those homes to provide supports. Federal and local policy should
affirm the separation in all programs specifically funding services or
housing.

-   **Speak with a vision.** Develop a broad-based inter-agency approach
    to housing. Unify and coordinate Federal efforts to affirm the
    principles of choice and control. This can be achieved through: (1)
    a coordinated initiative on personal housing through the Departments
    of Health and Human Services and Housing and Urban Development; (2)
    a modification the Federal commitment of HUD Section 8 rental
    assistance to include mortgage assistance; and (3) fiscal support of
    public information programs \-- change will be facilitated at the
    local level when consumers, family members, and advocates know what
    options are available.

-   **Act on a vision**. Establish consistent housing policies across
    Federal agencies. The Federal Government can directly facilitate
    choice and control through modification of existing policy: (1) by
    permitting recipients of Disabled Adult Child (DAC) or Social
    Security Disability Insurance (SSDI) benefits (without Supplemental
    Security Income or SSI) who are eligible for Home and Community
    Based Services to retain their full DAC or SSDI benefits while
    receiving waiver services; (2) by permitting people in means-tested
    programs to save towards home down payments or apartment
    deposits; (3) by allowing waiver funds to be applied to supplemental
    housing costs where SSI and available state supplements fall below
    standards; and (4) by increasing the size and flexibility of housing
    subsidy programs for impoverished persons with mental retardation.

-   **Encourage states to do what they do best \-- innovate**. Fund,
    support, and develop systems change projects. Experimentation is a
    hallmark of state systems; facilitate the transition from
    facility-based care to supported community living through fiscal
    assistance projects, and collaborative efforts with private
    financing agencies.

**WORK**

*\"Work in a sheltered workshop and make money \-- like 79 cents every 2
weeks. \"*

Tia Nelis, Illinois

In its 1967 Report to the President, PCMR estimated that the potential
annual earnings lost because of unnecessary unemployment among persons
with mental retardation ran into the billions of dollars.

The 1983 PCMR report concluded, \"\...there are hundreds of thousands of
mentally retarded people who are employable but are unemployed because
of misconceptions. The report asked us to raise our expectations.

Today, after a decade of raised expectations, we can point to years of
achievement, of research, and of model demonstrations in communities
across the nation. Persons with mental retardation have affirmed over
and over again PCMR\'s central belief in their capacity to be productive
workers. Tens of thousands have participated in innovative employment
programs in real work settings. The Federal Government has infused the
principle of equal work opportunity in every piece of disability-related
Federal legislation since 1973. Above all else, the decade of
demonstration has raised our expectations.

Yet the contemporary employment status of Americans with mental
retardation is one of underachievement. A decade after we proclaimed a
\"decade of progress\" in the 1983 report, unemployment rates among
adults with mental retardation exceed 70 percent. Why should this be?
Why is unemployment such an intractable problem given what we know \--
that thousands of persons considered unemployable years ago are now
working in real jobs in real work settings?

The weight of Federal and state funding remains largely devoted to
segregated services \-- 80 cents of every state dollar reimburses
segregated rehabilitation services; 90 cents of every Federal dollar
support segregated services. While research clearly demonstrates the
efficacy of integrated employment, state service systems remain deeply
entrenched in segregated models of rehabilitation. Integration in
employment is made more difficult by inconsistent Federal regulatory
policies, some of which restrict the opportunity for real employment.
Work incentive reforms, for example, recently enacted for supplemental
security income beneficiaries do not apply to SSDI and disabled adult
child (DAC) recipients with mental retardation. For these individuals,
employment endangers benefits, even at poverty level wages. In the
absence of transitional support, entry into the world of work is fraught
with personal risk.

Despite legislative intent, systems of employment training remain bound
to funded \"slots\" into which people must fit. Given the bias of the
system, the alternatives, if they exist, are limited. Seven out of 10
persons served in rehabilitation programs are either in separate or
non-work day activity type settings. We must personalize supports, let
consumers control funds to direct their own programs, and select the
types of supports needed. We must create the options so that choices are
available.

The goal of real employment and equal opportunity seems almost as
distant today as in 1967 or 1983. Though we now know the vision can be
realized in practice, the challenge is to make it a reality for more
than a select few. Large entrenched systems do not change so readily. We
recommend support for greater economic independence for persons with
mental retardation.

*Seventy percent of persons served in day and employment programs are
served in segregated programs; 90 cents of every Federal dollar supports
these segregated services.*

PCMR RECOMMENDATIONS: WORK

Workers with mental retardation have repeatedly demonstrated their
ability to be employed for decent wages with benefits. Like a distant
beacon, competitive employment shines as brightly as ever, but across a
sea of exclusion and unemployment. PCMR recommends bringing Federal
regulatory and fiscal policies into line with Federal principles and
ending Federal support for exclusion in the work place.

**SUPPORT THE PRINCIPLES OF CONSUMER INVOLVEMENT, CHOICE, AND CONTROL
WITH FEDERAL REGULATORY REFORMS**.

-   **Bring Federal spending into line with Federal principles**.
    Require the U.S. Department of Education\'s Rehabilitation Services
    Administration (RSA) funding (including Section 110 funds and the
    required state match) to be employed in support of integrated
    employment; change financial controls so that consumers exert
    control over expenditures. Use RSA leverage to modify state agency
    goals.

-   **Make the system accountable**. Monitor the implementation of the
    Rehabilitation Act Amendments to assure that consumers are offered
    services in real work settings and involve them in all stages of
    program planning. Ensure the adherence of state and local school
    systems to the employment goals of The Individuals with Disabilities
    Education Act.

-   **Build capacity**. Choice requires options. Use Federal
    demonstration funds to stimulate innovations in achieving integrated
    employment and support replication projects. Ensure the
    participation of youths with mental retardation in the
    Administration\'s school-to-work transition initiatives.

-   **Establish consistent policy across agencies**. Remove limitations
    on the use of Medicaid for integrated employment; ensure involvement
    of persons with mental retardation in the many employment and
    economic development initiatives of the Federal government.

**III. THE DIGNITY OF OUR CITIZENS: HEALTH, WELFARE, AND LONG-TERM
CARE**

In the journey of national renewal we must give priority to reforming
those systems that contradict fundamental American values of equality
and self-determination. The Clinton Administration has elevated these
contradictions to the center of the national debate in health, welfare,
and long-term care. How these debates are resolved will be critical to
the security of America\'s citizens, in particular those with mental
retardation.

Health care reform is a principal priority of PCMR. Americans with
mental retardation and their families are especially vulnerable to the
effects of discrimination in the health care system. Our struggle will
not end until universal coverage is achieved. We concur with the
President that \"\...the human cost far outweighs the risk of
responsible change.\"

Welfare serves many purposes. Above all else, it must support
self-sufficiency, productivity, family, and those who cannot care for
themselves. Americans with mental retardation are disproportionately
affected by pervasive and long-term poverty, unemployment, or long-term
dependency. They have very much to gain and very much to lose in the
outcomes of the nation\'s welfare reform. **We must be sure that the
interests of people with mental retardation and their families are not
lost in the clamor for change**.

Long-term care is a critical ingredient of a comprehensive domestic
agenda. The long-term care agenda recommended by PCMR is likewise a
critical element in any effort to provide a secure future for people
with mental retardation and their families. **The domestic reform agenda
is incomplete without a guarantee of home and community­based long-term
supports.**

The outcomes of domestic reforms are critical to the well-being and
dignity of all Americans. PCMR requests that the needs and the special
vulnerability of Americans with mental retardation not be overlooked in
the pending reforms.

**HEALTH**

> *\"No band-aids, real health care reform for all. \"*

Health care reform campaign button

*A moral imperative is non­negotiable. PCMR believes that health care is
a basic*

\"Seven years ago when Robert was 2 1/2 years old, he started having
epileptic seizures. Due to the seizures, Robert is mentally retarded and
at times unable to walk or talk. At the time he first became ill, Tom
was a first year apprentice with the Sheet Metal Workers Union. Our
insurance coverage was 80 percent with 20 percent to be paid by the
member. During that period we accrued several tens of thousands of
dollars worth of medical bills. As we were a struggling, young two
income family making \$20,000 per year, we applied for assistance, only
to be denied \-- because we were, \"just over the maximum income
allowed.\" After six months the insurance company stopped paying for a
nurse to help with Rob. I was forced to quit working. We sold the house
and took all the equity to pay off the medical bills. The move required
Tom to spend four hours on the road each day going to and from work.
Robert\'s illness made him uninsurable because he now had a
\"preexisting condition,\" and we became all too aware of how important
it was for Tom to keep his job. After the move more admissions followed,
and again the bills started mounting. It was at that time we were told
to apply for Children\'s Medical Services. If it were not for this
organization we would have been homeless. In October of 1992 our renewal
came due and we were denied services based on our income being in excess
of the \$22,000 per year maximum. Last year Tom\'s company was forced to
cut back to a 4-day work week. Due to Robert\'s preexisting condition
Tom is locked into his job, even if his employer cuts him back to a
3-day work week. The problems are neverending. Two years ago while
lifting Rob, I hurt my back. The injury has left me bedridden and unable
to care for Robert many times since. It was one of these times I
contacted the local agencies, to get some help taking care of Rob in our
home. I was told that if he was on Medical assistance they could send an
aide, but because he was ineligible, all they could offer was to
institutionalize him.

\"I informed them that I would not even consider putting Rob in an
institution, and that he would not thrive without the love of his family
nor would we. In an institution no one is going to get up during the
night, while he is having seizures, and let him know that it\'s \"ok\"
and that mom loves him. No one in an institution could ever give him the
love that we give him at home. This is why we so desperately need health
care reform. What has happened to us and many other families like ours
is wrong.\"

Kate Miles, Maryland

Americans with mental retardation and their families are painfully aware
of the health care crisis. Their needs are a microcosm of the national
crisis. Their voices are part of a larger chorus of Americans with
disabilities and their families and of the tens of millions of other
citizens with no coverage or inadequate and inferior care in the
world\'s most advanced nation. PCMR\'s position has an essential
predicate \-- that health care is a basic right of all Americans. We
support your courageous effort to \"undertake this journey of change\"
towards a just and equitable health care system for all.

Like other Americans, persons with mental retardation are remarkably
diverse in their health care needs. They cannot be treated as a single
constituency. Most have the same basic needs as everyone else. But they
have a special vulnerability which is the legacy of discrimination,
unemployment, and poverty. Many adults with mental retardation are often
disqualified for Medicaid because their disability is not \"severe\" or
because they are too proud to apply, yet the jobs they can find are
usually marginal or part time. As a result they are without the
continuity of health care that they particularly need. For these
individuals and their families there is a crisis of coverage.

For others, there are complex medical problems and significant health
care needs. These individuals have disorders associated with rare or low
incidence syndromes, or challenging behavior problems requiring health
care professionals with specialized training. Meeting their needs has
been complicated by shifts in models of care. Those most severely
impaired are now living longer because of medical advances and their
numbers are increasing because of improved health care during infancy
and childhood. The locus of health care services for this population is
in the community. But there is a severe shortage of providers with even
the rudimentary expertise in working with individuals with mental
retardation. For these individuals, there is a crisis of care in the
community.

What do Americans with mental retardation need? Policies affirming
guaranteed health coverage that directly address the inequities and
arbitrariness of the current care system: universal coverage, limits on
out-of-pocket expenses, access to specialists, elimination of work
disincentives, and home and community-based long-term services,
including personal assistance services.

**PCMR RECOMMENDATIONS: HEALTH**

For Americans with mental retardation, there is a dual health care
crisis \-- shrinking coverage and a dearth of skilled practitioners in
the community. Both must be addressed. The following recommendations
address universal coverage, service delivery, and financing.

Like all journeys into uncharted regions, the nation\'s passage will be
marked by false starts, unexpected turns, and illusory conclusions. For
persons with mental retardation and their families, the endpoint of the
health care reform battle is clearly marked.

**TRUE HEALTH CARE REFORM MUST INCLUDE UNIVERSAL AND COMPREHENSIVE
COVERAGE**

-   **Do not discriminate**. People with mental retardation must be able
    to participate fully in the nation\'s health care system, regardless
    of age, health, disability status, or income. **Permit no exclusions
    based on pre-existing conditions**.

-   **Be comprehensive**. People with mental retardation must have
    access to a health care system that ensures a comprehensive array of
    health, rehabilitation, personal, and support services across all
    service categories and sites of service delivery. **Provide access
    to specialists and other providers**.

-   **Serve the person not the system**. Ensure the appropriateness of
    health services. People with mental retardation and their families
    must be assured that comprehensive health, rehabilitation, personal,
    and support services are provided on the basis of individual need,
    preference, and choice. **Allow meaningful consumer involvement,
    accountability, and provision of home and community-based long-term
    care.**

-   **Be equitable**. People with mental retardation and their families
    must be assured equitable participation in the nation\'s health care
    system and not be burdened with disproportionate costs. There cannot
    be financial disincentives for serving people with more intensive
    needs for health services and other supports**. Limit out of-pocket
    costs and eliminate lifetime caps on benefits.**

-   **Be efficient**. People with mental retardation and their families
    must have access to a health care system that provides a maximum of
    appropriate, effective services that includes effective cost
    controls as well as a minimum of administrative waste. **Remove work
    disincentives in health coverage policies.**

-   **Do not exclude**. True health care reform must integrate, not
    segregate, health services for persons with mental retardation. In
    the reform of the nation\'s health care systems, we must vigilantly
    adhere to the intent of the Americans with Disabilities Act. Ensure
    equal access. Policies and procedures may not, by design or impact,
    deny individuals with mental retardation health services by reason
    of their disability. Rationing, or denial of coverage, or unintended
    discriminatory effects of neutral policies are violations of the
    intent of the law.

-   **Build capability**. Prepare service providers and service
    consumers. Health care providers, including family physicians, need
    knowledge, experience, and models. Much exclusion occurs not because
    of lack of skills but because of lack of experience. Similarly,
    persons with mental retardation and their families must be made
    aware of their options and rights.

-   **Build capacity**. High quality primary care must be available to
    all, at all ages. Home health care services must be available.

-   **Do not eliminate options currently available.** Referral to
    specialist care must be an option within the generic system. For
    people with atypical medical needs, \"comprehensive\" services must
    include referral to the most relevant specialists.

**WELFARE**

*\"It defies our values as a nation. \"*

*President Clinton\'s 1994 State of the Union Address*

Welfare in its present form presents a challenge for persons with mental
retardation \-- economic self-sufficiency, equal opportunity, family
support, and above all the dignity and respect that come with being a
contributing and productive citizen. The welfare system has personal
assets limitations that discourage savings towards future needs. There
is a penalty on parents, brothers, sisters, and other family who assume
the responsibility of care, even when few viable alternatives exist.
Support based on total dependency serves to discourage integration into
the work force. PCMR believes an effective system of social welfare
should promote the independence of people and reduce their long-term
dependence over time. Let people work and save and encourage family
support.

Persons with mental retardation are participants in the full range of
social insurance programs \-- as workers contributing taxes to Social
Security, as dependents and survivors entitled to draw on the Old Age,
Survivors, and Disability Insurance (OASDI) and Social Security
Disability Insurance (SSDI) Trust Funds, and as recipients of
means-tested income assistance. It is on behalf of those who are most
economically vulnerable that PCMR addresses its concerns and
recommendations.

Two pillars of Federal poverty-related income assistance to persons with
mental retardation are the Supplemental Security Income (SSI) program
and the Aid to Families with Dependent Children (AFDC). PCMR supports
the Administration\'s scrutiny of AFDC; we urge you to also include
changes in the SSI program in the larger welfare reform agenda. SSI
plays a central role in the modern configuration of mental retardation
services. Benefits now reach more than 700,000 Americans with mental
retardation under 65 years of age. Contradictions between social goals
and statutory regulations within SSI have long been the object of
criticism. The SSI Modernization Panel noted several problems:
regulations that discourage personal savings, the harshness of in-kind
support penalties on family care, and earned income exclusions that make
the transition from welfare to work extraordinarily difficult for
potential wage earners with mental retardation. We strongly support the
recommendations of the SSI Modernization Project Panel: bring Federal
benefit standards in line with our national goals.

PCMR is concerned about the outcomes for persons with mental retardation
and their families in the current welfare reform debate. While changes
are needed, it is important to consider carefully how any modifications
will affect those for whom work mandates are inappropriate. For
recipients with mental retardation there is a narrow line between the
objectives of welfare reform and unintended neglect. Federal data
indicate a rate of functional disabilities among women in the AFDC
population to be in the 20 percent range. In addition, some 19 percent
of households receiving AFDC benefits have another disabled adult or
child present. Of the total AFDC enrollment of 14.1 million, an unknown
but potentially large number have mental retardation. In short, many
AFDC recipients, children as well as adults, have disabilities and are
truly dependent.

In total numbers and potential impact, Americans with mental retardation
have a significant stake in the course of welfare reform. In our effort
to correct the wrongs of the system, we must not forget those most
vulnerable. Do no harm. We urge sensitivity to the unique needs of
welfare recipients with mental retardation.

*There is a fine line between reform and neglect; in our reforms we must
do no harm to those most vulnerable.*

PCMR RECOMMENDATIONS: WELFARE

PCMR believes that an effective social welfare system is an investment
in human capital. The central reform issue is the use of welfare for the
realization of potential. We concur with the Administration that the
central objective of welfare reform is to bring today\'s systems of
support into congruence with core American values.

**LONG-TERM CARE**

*We must be cognizant of the role that Medicaid plays in the support of
Americans with mental retardation. Realize also that it has been both a
bane and bulwark.*

Disability is a natural dimension of the human condition. It can touch
any life at any time and for many Americans it is manifested as a
lifelong need for support. Among this group are significant numbers of
Americans with mental retardation. While the composition and character
of long term care is in a state of continuous evolution, we can address
the basic features that impact most significantly on persons with mental
retardation.

The existing Federal supports for long term care services for Americans
generally have been characterized as a \$70 billion system that is
fragmented and ill-matched to the needs of current recipients. It has a
medical bias that results in persons going without services or receiving
more intensive services than necessary. These critiques are no less
valid when applied to the long-term care needs of persons with mental
retardation and their families.

What Americans with mental retardation and their families desire is both
more and less than the current system delivers, derived as it is from
its institutional precursor. The agenda in long-term care is both a
composite and a constituent part of the reform debates on employment,
health care, housing, and welfare. What is desired of long-term care is
an extension of what is needed generally from our reform efforts \--
greater independence, choice, dignity, and inclusion.

To understand the texture of the contemporary long-term care system for
Americans with mental retardation one must understand its historical
antecedents in the state-operated institutional care system. Over two
decades ago Federal Medicaid dollars were used to finance improvements
in the state institutions and to create additional capacity in the
private sector. Beginning with the Home and Community Based Services
(HCBS) waiver in 1981, diversion of Medicaid funds was authorized for
community placements of individuals who might otherwise have qualified
for an Intermediate Care Facility-Mental Retardation (ICF-MR) bed. Thus
it was through the open-ended Medicaid ICF-MR program that states
expanded long-term residential alternatives outside of the traditional
state operated institutional system.

We must be cognizant of the enormity of the Medicaid program in the
lives of persons with mental retardation. Revisions in policy will
dramatically affect the character of services. Medicaid ICF-MR and Home
and Community-Based Services funds represent the single largest Federal
services program in the field. For over 20 years, its institutional
component has grown dramatically. Because of its size and institutional
origins, Medicaid is both bulwark and bane to long-term care. The funds
are a cornerstone of funding in the field. When matched with mandated
state and local funds, Medicaid accounts for 52 percent of all financial
resources for mental retardation services nationally. Nevertheless, for
all the Federal legislative and administrative language expressing
commitment to independence and inclusion in the community, only 1.5
percent of this enormous annual Federal investment is used for
individualized supports for people with mental retardation.

Needs for long-term care are significant and will grow through the
decade. Waiting lists for placements into residential facilities are
estimated in excess of 78,000. There are also over 40,000 nursing home
residents with mental retardation; many will require transfer to more
appropriate settings. There is a large population of adults supported at
home with aging parents increasingly unable to provide care. Finally,
there are those 228,000 persons in state institutions and other
congregate facilities with over 6 beds for whom more individualized
supports are required.

Our concerns in long-term care are mirrored in our recommendations for
housing. Despite the contraction of the institutional network, and
despite the dramatic growth of individualized supports in the community,
the non-inclusive character of the nation\'s residential services for
persons with mental retardation remains fundamentally unchanged. Ending
this segregation is our first priority. We must realign the nation\'s
fiscal commitments to bring this about. Federal funding policies must be
modified to eliminate fiscal incentives that encourage development of
more institution-like care in separated facilities of all sizes. We must
bring coherence to long-term care; it must be predicated on the
individual not the facility, on personal needs and not professional
guilds, on consumer choice rather than service \"slots.\"

PCMR underscores again the interconnectedness of the domestic agenda for
Americans with mental retardation. Health housing, and welfare reform
will not be complete until the long term care needs are systematically
and comprehensively accounted for.

**PCMR RECOMMENDATIONS: LONG-TERM CARE**

The long-term care agenda for persons with mental retardation is
inextricably linked to our reform recommendations in health, housing,
welfare, and work. Each is a critical component to long-term care. What
is presented below is not a recitation of new and additional services
but rather a recommendation for a coherent approach to long-term
supports based on the President\'s call for \"People First.\"

**COMMIT FEDERAL POLICY TO THE PRINCIPLES OF INDEPENDENCE AND COMMUNITY
LIFE**

-   **Permit the states to innovate**. Federal commitments to
    instititutional services spending through Medicaid ICF-MR are
    enormous, yet we continue to cap the level of Medicaid benefits
    available for serving people in their own homes. Make the Medicaid
    Home and Community Based Services a full Medicaid option. Regularly
    provide residents of ICFs-MR the option to use the Medicaid HCBS
    Waiver. Permit Medicaid Waiver funds to be used to supplement
    housing costs.

-   **Provide universal access to individualized long-term care supports
    through social insurance**. Provide reasonable cost sharing through
    modest deductibles and co-insurance; uphold personal dignity and
    self-direction; minimize dislocation; provide only that which is
    specifically appropriate to the individual; avoid forced
    impoverishment.

-   **Put people first**. Long-term services must commit to a
    non-facility based model of care; address the needs of the
    individual and break free of the \"continuum\" of care funding
    options.

**IV. EPILOGUE: PUTTING PEOPLE FIRST**

The contours of mental retardation in America changed significantly in
the 27 years since [MR 67]{.underline}. Yet inequities remain, and basic
paradigms of care are unchanged. PCMR\'s recommendations are a challenge
to these old assumptions.

Our recommendations must be viewed as mere threads in the larger fabric
of an individual\'s experience. Reform is more than the identification
of \"optimal\" services; what we do cannot be disentangled from the
meanings, experiences, and aspirations of the individuals that all these
systems of supports are intended to serve. The essence of reform in the
field of mental retardation lies in an abiding respect for the person.
We are talking about constituents, not clients; citizens rather than
recipients \-- let us not lose sight of the person in the policy.

\"We went to a forest preserve one weekend,\" recalled Linda Preston." A
group of young adults had an impromptu concert with bongos, drums, and
other instruments. We went over to listen. One of them gave Elisha some
maracas. And for the next hour, Elisha was just one of the bands, making
music, dancing and keeping the beat. They didn\'t see his disabilities.
They just saw the music in him.\"

This is the crossroad. In our journey of national renewal, we must
choose to challenge the old assumptions. We must move the nation towards
a vision that accords a basic dignity to all its citizens. Let
America\'s fundamental nobility be reflected in the lives of those like
Elisha Preston, Katie Charlton, David Guillet, and Robert Miles. Their
passage is a journey we will all share.

Appendix A

PCMR Citizen and Ex Officio Members and Staff

The Honorable Donna E Shalala, Chair, President\'s Committee on Mental
Retardation

Secretary, U.S. Department of Health and Human Services

Washington, D. C.

Valerie J. Bradley, Vice Chair, President\'s Committee on Mental
Retardation

President, Human Services Research Institute

Cambridge, Massachusetts

\*Lorenzo H. Aguilar-Melancon

5822 Cromo, Suite 320

El Paso, Texas 79912

Ph: (915) 584-5535

\*Ann M. Forts

P.O. Box 644 Center

Harbor, New Hampshire 03226

Ph: (603) 253-6722

\*Kenneth L. Barun

Ronald McDonald Children\'s Charities Kroc Drive

Oak Book, Illinois 60521

Ph: (708) 575-5505

\*Gisselle Acevedo Franco

Bilingual Advocate California Protection and Advocacy, Inc.

221 E. Glen Oaks Boulevard, Suite 220

Glendale, California 91202

Ph: (818) 546-1631

\*Valerie J. Bradley, President

Human Services Research Institute

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140

Ph: (617) 876-0426

\*Robert E. Brown

P.O. Box 462

Put-In-Bay, Ohio 43456

Ph: (419) 285-3500

\*Jane Browning

Director of Community Services

The Arc of Maryland, Inc.

6810 Deerpath Road, Suite 310

Baltimore, Maryland 21227

Ph: (410) 379-0400

\*Robert D. Dinerstein

The American University

Washington College of Law

4400 Massachusetts Avenue, N.W.

Washington, D.C. 20016

Ph: (202) 885-1515

\*Linda Felner

1 Well House Close

Mamaroneck, New York 10543

Ph: (914) 698-4403

\*Marcia Frey

139 Genius Drive

Winter Park, Florida 32789

Ph: (407) 628-0139

\*Thomas Gunnings, Ph.D.

2614 Cochise

Okemos, Michigan 48864

Ph: (517) 332-0811

\*Ruth Luckasson, J.D.

Regents Professor and Professor of Special Education

University of New Mexico

Albuquerque, New Mexico 87131

Ph: (505) 277-7231

\*T.J. Monroe

Middle Tennessee Self-Advocacy Coordinator

People First of Tennessee

P.O. Box 121211

Nashville, Tennessee 37212-1211

Ph: (615) 297-2734

\*Betty B. Osman, Ph.D.

White Plains Hospital Medical Center

Department of Psychiatry

Davis Avenue at East Post Road White Plains, New York 10601

Ph: (914) 723-4397

Ph: (914) 681-1078

\*Elizabeth Pittinger

Regional Director Step by Step, Inc.

1216-1218 Grandview Avenue

Pittsburgh, Pennsylvania 15211

Ph: (412) 381-3800

\*Michael Remus

Director of Student Services

Educational Service Unit #7

2657 44th Avenue

Columbus, Nebraska 68601

Ph: (402) 564 0815

\*\*The Honorable Henry Cisneros

Secretary of Housing and Urban Development

US. Department of Housing and Urban Development

451 7th Street, S.W.

Washington, D.C. 20410-0001

Ph: (202) 708-0417

\*\*Eli J. Segal

President and CEO

Corporation for National and Community Service

1100 Vermont Avenue, N.W., Room 6100

Washington, D.C. 20525

Ph: (202) 606-5000

\*Tom R.C. Smith

Associate Professor

Department of Teacher Education

University of Arkansas at Little Rock

Little Rock, Arkansas 72204

Ph: (501) 569-3016

\*\*The Honorable Richard W. Riley

Secretary of Education

U S. Department of Education

400 Maryland Avenue, S.W.

Washington, D.C. 20202-0001

Ph: (202) 401-3000

\*Deborah M. Spitalnik, Ph.D.

Executive Director

The University Affiliated Program of New Jersey

Brookwood II, 2nd Floor

45 Knightsbridge Road

P.O. Box 6810

Piscataway, New Jersey 08855-6810

Ph:(908) 235-4447

\*Cathy Ficker Terrill

Vice President, Quality and Strategic Planning

Ray Graham Association for People With Disabilities

340 W. Butterfield, Suite 3C

Elmhurst, Illinois 60126

Ph:(708) 530-4554

E. Duane Thompson

205 Oakwood

Geneva, Illinois 60134

Ph:(708) 844-5040

\*Virginia J. Williams

Senior Advisor

Georgetown University

Child Development Center

3307 M. Street, N.W., 4th Floor

Washington, D.C. 20007

Ph: (202) 687-8635

\*\*The Honorable Janet F. Reno

Attorney General

US. Department of Justice

Constitution Avenue and 10th St., N.W.

Washington, D.C. 20530-0001

Ph:(202) 514-2001

\*\* The Honorable Robert B. Reich

Secretary of Labor

U.S. Department of Labor

200 Constitution Avenue, N.W.

Washington, D.C. 20210

Ph: (202) 219-8271

\* denotes Appointed 1994

\*\* denotes Ex Officio Members

Gary H. Blumenthal, Executive Director

John L. Pride, Deputy Executive Director

George N. Bouthilet, Ph.D., Full Citizenship and Justice Coordinator

Ashot P.Mnatzakanian, Family and Community Support Coordinator

Laverdia T. Roach, Prevention Coordinator

Bena L. Smith, Public Awareness Coordinator

Fred J. Krause, Special Assistant to the Executive Director

Peggy A. Butler, Secretary to the Executive Director

Rosa M. Singletary, Program Assistant

Angie D. Green, Clerk-Typist

Terry A. Lion, Clerk-Typist

**Appendix B**

**PCMR Advisory Planning Committee**

William E. Jones, Ph.D., Chairperson

Executive Director

American Association of University Affiliated Programs

8630 Fenton Street - Suite 410

Silver Spring, Maryland 20910

Ph: (301) 588-8252

David M. Mank, Ph.D.

Associate Professor Specialist Training Program

1235 University of Oregon

Eugene, Oregon 97403-1235

Ph: (503) 346-2477

Fax: (503) 346-5517

Kathy Beyer

People First of Northern Virginia

100 N. Washington Street - Suite 234

Falls Church, Virginia 22046

Ph: (703) 532-3214

David Braddock, Ph.D.

Professor, Institute on Disability and Human Development

The University of Illinois at Chicago

1640 West Roosevelt Road

Chicago, Illinois 60608

Ph: (312) 413-1647

Sharon Davis, Ph.D.

The Are - National Headquarters

500 East Border - Suite 300

Arlington, Texas 76010

Ph: (817) 261-6003

Steve Eidelman

Executive Director

Joseph P. Kennedy, Jr. Foundation

1350 New York Avenue, N.W. Suite 500

Washington, D.C. 20005-4709

Ph: (202) 393-1250

Matthew P. Janicki, Ph.D.

Director

Aging Services for the New York State Office of Mental Retardation and
Developmental Disabilities

44 Holland Avenue

Albany, New York 12229-0001

Ph: (518) 473-7855

Fax: (518) 473-9695

K. Charles Lakin, Ph.D.

Director for Research and Dissemination Minnesota University Affiliated
Programs on Developmental Disabilities

University of Minnesota

6 Pattee Hall

Minneapolis, Minnesota 55455

Ph: (612) 624-5005

Paul Marchand

Chairperson

Consortium for Citizens with Disabilities

1522 K Street, N.W. - Suite 516

Washington, D.C. 20005

Ph: (202) 785-3388

Jan Nisbet, Ph.D.

Director

Institute on Disability University of New Hampshire

UNH 312 Morrill Hall

62 College Road

Durham, New Hampshire 03824

Ph: (603) 862-4320

Frank R. Rusch, Ph.D.

Director and Professor

Secondary Transition Intervention Effectiveness Institute

College of Education

University of Illinois at Urbana Champaign

110 Education Building

1310 South Sixth Street

Champaign, Illinois 61820

Ph: (217) 333-2325

Marsha Mailick Seltzer, Ph.D.

Professor

Waisman Center

University of Wisconsin-Madison

1500 Highland Avenue

Madison, Wisconsin 53705-2280

Ph: (608) 263-7878

Fax: (608) 262-8848

Steven Taylor, Ph.D.

Director

The Center on Human Policy

School of Education

Syracuse University

200 Huntington Hall

Syracuse, New York, 13244-2340

Ph: (315) 443-3851

Alexander J. Tymchuk, Ph.D.

Associate Professor and Director of the Parenting Project

UCLA Neuropsychiatric Institute and Hospital

760 Westwood Plaza

Los Angeles, CA 90024-1759

Ph: (310) 825-0026

Paul Wehman, Ph.D.

Director

Rehabilitation Research and Training Center

School of Education

Virginia Commonwealth University

Richmond, Virginia 23284-0001

Ph: (804) 367-1851