President's Committee on Mental Retardation

Collaborating

for

Inclusion

1995 Report to the President

> U.S. Department of Health and Human Services Administration for
> Children and Families

President\'s Committee on Mental Retardation

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Collaborating For Inclusion: 1995

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PRESIDENT\'S COMMITTEE ON MENTAL RETARDATION

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Administration for Children and Families

Washington, D.C. 20201-0000

**June 12, 1996**

**The President The White House**

**Washington, D.C. 20500**

**Dear Mr. President:**

**On behalf of the Self-Advocates, family members, service providers,
professionals and advocates who comprise the President\'s Committee on
Mental Retardation (PCMR), I am pleased to share with you the
Committee\'s 1995 Report to the President, [Collaborating for
Inclusion]{.underline}.**

**The Report is a product of cooperation between Federal, State and
local officials who have joined together, through the Committee\'s
National Collaborative Academy on Mental Retardation, to support State
and local efforts that strengthen our nation\'s commitment to assure
that all Americans have productive and meaningful lives.**

**The Report articulates the Committee\'s pride in the tremendous steps
that have been taken to include citizens with mental retardation in
community life, and also shares a vision for Federal, State and local
leaders who wish to work effectively together to promote coherent
policies that will support such independence.**

**The Committee is proud to share the dreams and aspirations of
Self-Advocates and family members as eloquently articulated by the PCMR
member and Self-Advocate, Ann Forts, who spoke at the National
Collaborative Academy on Mental Retardation, and urged State and Federal
Policymakers to understand that she and other Self-Advocates \"want to
see all of the doors opened and want \... the chance to enjoy all of the
opportunities that everyone else has the chance to enjoy.\"**

**The President\'s Committee on Mental Retardation is proud to offer
this Report for your consideration.**

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TABLE OF CONTENTS

Acknowledgements

Preface

I.  Where We've Been

II. Where We Are

III. Guiding Principles for Community Inclusion

IV. Challenges to Inclusion

V.  Guidelines on the Journey to Inclusion

VI. Current Policy Trends and PCMR Recommendations

VII. PCMR's Commitment to States

> Bibliography
>
> Academy Presenters Cited
>
> PCMR Members

Acknowledgments

The President\'s Committee on Mental Retardation (PCMR) is pleased to
share its 1995 Report to the President: Collaborating for Inclusion. The
Report represents a concentrated and strategic effort by PCMR to engage
Collaborative State Teams to design plans for supporting and promoting
the inclusion of citizens with mental retardation in community life.
State Teams, including State policymakers such as State legislators,
budget officers, and State agency mental retardation/developmental
disability personnel, joined with self-advocates, family members,
service providers, direct support workers, and educators to design State
plans that could maximize each individual\'s contribution in achieving
inclusion in each State and local community.

PCMR would like to extend the Committee\'s appreciation to Sharon Davis,
Ph.D., of the Arc-U.S., for her creativity and diligence in pulling
together the recommendations and observations of the participants in the
1995 National Collaborative Academy on Mental Retardation, which
constitute the background and basis of the Committee\'s Report to the
President. As well, the Committee is deeply appreciative of the efforts
of Tecla Jaskulski for her extraordinary editing and poetic ability to
express the concerns and dreams of the Self-Advocates, Family Members,
State Policymakers, and PCMR Committee Members who offer this 1995
Report to the President.

The Committee would also like to express its appreciation to the
Administration for Children and Families (ACF), Mary Jo Bane, Assistant
Secretary and Ann Rosewater, Deputy Assistant Secretary, for their
leadership and support of the Committee\'s initiatives.

Gary Blumenthal

Executive Director

Preface

The President\'s Committee on Mental Retardation strongly supports the
inclusion of individuals with mental retardation in all aspects of
community life. To further the prospects of inclusion, in September 1995
the President\'s Committee sponsored the first in a series of National
Collaborative Academies on Mental Retardation, designed to provide
information regarding community inclusion to State Teams. State
legislators, budget directors, business community leaders, key staff
members from each State\'s Governor\'s office, family members, and self
­advocates (people with mental retardation) joined mental retardation
service providers and State mental retardation/developmental
disabilities agency personnel to form State Teams for this very
important meeting. Delegations from Illinois, Louisiana, Maryland,
Missouri, North Carolina, North Dakota, and Washington participated and
began developing State Collaborative Plans to increase opportunities for
including children and adults with mental retardation in everyday life.

The President\'s Committee on Mental Retardation recognizes that the
impetus for change must come from the community and State level. Plans
developed by State Teams will need to be refined, implemented, and
adjusted many times, as States initiate change and respond to policy
reform efforts at the Federal level and requests for innovation from
consumers, families, and providers in the State. It is critical that the
plans continue to evolve as they are implemented to ensure their maximum
success.

During the Academy, the State Teams participated in numerous learning
experiences. They heard many examples of how people with mental
retardation have become valued members of their communities. Some of the
most wonderful examples were given by individuals with mental
retardation whose lives have been transformed by changes in how they
receive services and supports. Hearing individuals with mental
retardation talk about how important it is to be in charge of their own
lives and to be included in their communities helped all Academy
participants to have a better understanding of the importance of
promoting community inclusion and person-centered support systems. State
delegations left the Academy with an improved sense of the contributions
that can be made by people with mental retardation in the community.

State Teams also heard that promoting self-determination and life-long
community inclusion and participation requires new ways of thinking
about services for people with mental retardation. No longer is it
appropriate to talk about clients receiving services determined solely
by mental retardation professionals. Rather, supports must allow people
to choose what they want and need rather than what the service system
wants to provide them. Supports must be designed for each person based
on individual need, and must not require people to leave home or family
in order to accept services that are offered. This shift to
person-centered supports and inclusion will require changes in Federal
and State policies, as well as changes in the way agencies provide
services and funds. Although these changes have already begun, there is
still much work to be done.

Focusing on support to the journey to inclusion, this Report to the
President summarizes the principles emerging from the Academy\'s
deliberations, provides guidelines developed by State Teams to enhance
collaborative promotion of inclusion, and presents positions of the
President\'s Committee on Mental Retardation regarding the relevant
public policy issues under debate in the current era of reform.

> **REPORT TO THE PRESIDENT Challenges to States: Federal Reform and
> Community Inclusion of Citizens with Mental Retardation**
>
> *The President\'s Committee on Mental Retardation*

Self-advocates have a simple message for all who will listen: to be
included in their communities, and not to be known by the label of
mental retardation. Speaking to participants at the National
Collaborative Academy in September 1995, self-advocates Ann Forts and
James Meadours made the following points:

\"*I want all of the doors to be opened and I want the chance to enjoy
all of the opportunities that everyone else has the chance to enjoy.\"*

Ann M. Forts, PCMR member,

Center Harbor,

New Hampshire

*\"My dream is to see equal rights for people with mental retardation
and other disabilities move from a vision to reality. It is beneficial
for everyone to help each other out. We are the best people to help you
out - listen to us*.\"

James Meadours, VISTA Volunteer,

Oklahoma People First,

Tulsa, Oklahoma.

*We must recognize that those living with mental retardation have much
to offer our society and that our strength as a nation depends upon the
contributions of all our people. (Bill Clinton, Letter to Academy
Participants, September 6, 1995.)*

The President\'s Committee chose inclusion as the theme for the National
Collaborative Academy because of its critical importance to people with
mental retardation and their families. Academy participants heard from
several self-advocates and family members on successes in experiencing
inclusion, as well as barriers encountered on the journey to inclusion.
The Academy produced principles and guidelines for reconfiguring systems
to better support inclusion of people with mental retardation and
related disabilities. These were taken back home by the collaborating
State Teams, along with specific strategies to help their States get
started on making inclusion a reality.

The Academy took place in a climate of intense debate on Federal laws
and policies that have an impact on people with mental retardation and
their families. Regardless of the final outcomes, it is clear that
long­standing assumptions about the role of States in administering
Federal programs are changing. Services and supports that promote
community participation for people with mental retardation are among
those slated for reform. In some cases, laws defining rights and
protections important to individuals with mental retardation are being
questioned.

The President\'s Committee on Mental Retardation views these challenges
as an opportunity to reexamine how this nation offers services and
supports to people with mental retardation: What do people really need
and want? How can States best design their service systems to meet these
needs efficiently and effectively? How can local communities create
supports and enhance inclusion of people with mental retardation?

We present this report to summarize the guidance brought forth at the
Academy. We hope that it will provide further support and stimulation to
all who care about people with mental retardation as we address the
challenges before us.

I.  **Where We\'ve Been**

One Man\'s Walk Through the

Modern History of Residential Services

*When l lived at Lake Owasso State institution in Minnesota, you had to
ask for everything: \"Can you let me out?\" \"Can I have a can of pop?\"
\"Can 1 stay up a little bit longer?\"*

*When I moved into a group home, I had to follow all of the rules. I had
to go to bed at a certain time, and when I was in bed, I had to be
asleep; that was that. I lived with two other guys. We were being
watched all the time, 24 hours a day, seven days a week.*

*Two years ago I got married. My wife and I moved into our own
apartment. Now that I have my own place, I make the decisions. I have my
own keys. I can let myself out, and let myself back in.*

*Now I can come and go when I want. I can make my own food, and I decide
whether I want to have breakfast or lunch, or when I\'m ready for a
snack. We can invite friends to stay over. My wife and I decide when the
staff comes over. They help us with some things, but we make our own
decisions.*

Kevin Otley

This excerpt from *The Journey to Inclusion, a Resource Guide for State
Policymakers*, developed by the President\'s Committee and presented to
Academy participants to assist their collaborative efforts in promoting
inclusion, summarizes the evolution in residential services for people
with mental retardation. Various presenters at the Academy reminded
participants about changes in values and philosophy that are reflected
in how services and supports have been provided to people with mental
retardation.

The President\'s Committee on Mental Retardation was founded in 1966, at
the height of the institutional era in providing services to people with
mental retardation. Throughout the first two-thirds of the twentieth
century, large State mental retardation institutions grew in population,
reaching a peak of nearly 200,000 in 1967. The State facilities were
often the only resource to families seeking services for their family
member with mental retardation. Although many people with mental
retardation were never institutionalized, segregation and exclusion from
activities outside the immediate family circle were commonplace.

The era of institutional reform began in the mid­1960s, as attention to
inhumane conditions in institutions led to demands for improvements.
Litigation rulings, such as the landmark Wyatt v. Stickney and Pennhurst
cases, forced institutions to improve conditions. Family members joined
with advocacy organizations and policymakers at the Federal level to
support national standards for institutional services funded through the
Medicaid program. Regulations for Intermediate Care Facilities for
persons with Mental Retardation and Related Conditions (ICF/MR)
facilities began covering services in State institutions in the early
1970s. Although custodial and medical models prevailed, the initial
ICF/MR standards were significant in improving staffing patterns,
environmental conditions, and basic rights.

During the 1970s, there was increased understanding that people with
mental retardation-including those whose limitations are more severe can
learn, can adapt, and can grow and change. Developmental approaches
based on learning theory replaced custodial care in the institutions,
and new Federal regulations required State institutions and other
facilities certified under the ICF/MR program to provide basic and
specialized services designed to increase each person\'s abilities and
skill levels.

This also became the era of deinstitutionalization, as most States and
communities developed services for people with mental retardation who
were able to leave the State institutions or who had never been placed
there. Public Law 94-142 was enacted in 1975, establishing the right to
a free and appropriate public education for children with mental
retardation and other disabilities.

\"Adult activities\" for people with mental retardation expanded to
include a variety of vocational options as well as continuing to provide
day activity programs for those with more severe disabilities. Public
expenditures for mental retardation/developmental disabilities rose from
\$3.457 billion in 1977 to \$11.733 billion in 1988, of which nearly 48
percent was devoted to community-based services.

Despite the significant increase in community living arrangements and
related services, however, many people with mental retardation were
still largely segregated from their fellow community members. During the
late 1980s, people with mental retardation, family members, advocates,
and some service providers began to question the lack of community
membership and participation even among individuals who were living in
the community. New approaches to community living and to supporting
individuals in relation to their unique goals, strengths, and challenges
emerged. States and individual provider agencies began experimenting
with techniques such as circles of support, person-centered planning,
and supported living.

Twenty-eight States competed for eight slots in the Medicaid Community
Supported Living Arrangements program in 1990, while the population of
State mental retardation institutions fell to 84,732 and the number of
people served through the Medicaid Home and Community­ Based Services
waiver rose to 45,203.

By 1992, public expenditures for community-based services nationally had
surpassed those supporting care in large facilities. Although ratios
varied greatly among the States, all States had increased the portion of
expenditures devoted to community services compared to 1988. Forty-­seven
States were serving a total of 63,206 individuals through Medicaid Home
and Community-Based Services waivers designated to expand services in
the community for people with mental retardation/developmental
disabilities.

And self-advocates were increasingly vocal as they challenged all of us
to accord them respect as individuals as well as community membership.

*As we reach the mid-1990s, there is considerable evidence of progress
toward the inclusion of people with mental retardation.*

II. **Where We Are**

As we reach the mid-1990s, there is considerable evidence of progress
toward the inclusion of people with mental retardation. Although
community presence cannot be equated with community membership and
inclusion, it is significant that:

• Only 62,028 people with mental retardation and related disabilities
were housed in State institutions as of June 1995, compared to the peak
institutional population of 194,650 in 1967.

• About 4,000 children were living in State institutions in June 1994,
down from 91,600 in 1965.

• Over half of the 314,503 people with mental retardation/developmental
disabilities receiving State­licensed or operated residential services in
1995 were in community living arrangements for six or fewer people.

• The average size of residential service settings had dropped from 22.5
in 1977 to 3.8 in 1995.

In many communities, children with mental retardation are being included
in their neighborhood schools. Academy participants heard from Cathy
Ficker Terrill, PCMR member from Elmhurst, Illinois, about her
successful struggle to have her daughter Beth attend a regular classroom
in her neighborhood school. Beth, now ten years old, has multiple health
problems along with mental retardation and cerebral palsy. The local
school system had never included a child with disabilities like Beth\'s
in a regular classroom. Cathy and her husband had to educate school
staff about inclusion and guide the planning for Beth\'s Individual
Education Program, but their advocacy paid off.

As Cathy reported, \"*Beth is now going to her home school. She is fully
included. She has the necessary supports. The professionals have been
trained. This year, both she and her aide have been promoted to third
grade*.\"

Many adults with mental retardation are working in the community,
employed competitively with and without ongoing supports. The Academy
heard from Mary Lynn Gladding, a certified child care worker with mental
retardation, on her happiness with her job at the Before and After
School Program run by the Howard County, Maryland, Department of Parks
and Recreation:

*What I mostly do for my job is /just set up, I get snacks ready, and 1
work with the children. And it\'s not easy. Some of these kids are very
challenging, especially in the fifth grade. But really, I love what I
do, and it\'s been three years, almost four.*

*I get along with the children very well. They know I\'m different, but
they accept me for what I am. They ask me questions, I ask them
questions, and I think we*

*become a tighter knit family with the children, employers and the
coworkers.*

*This is the best job I ever had, working with children. Even when I\'m
65 years old, I\'m going to retire happy by working with children,
because really, what are children if they don\'t have a positive role
model to stand up for them?*

Some adults with mental retardation now have the opportunity to own
their own homes or hold their own rental agreements, under a variety of
\"Home of Your

Own\" initiatives featured at the Academy. Norman and Edith Braley of
Eddington, Maine, told participants that having their own three-bedroom
mobile home that sits on their own land is \"a dream come true\" after
moving among institutions, group homes, and city apartments for most of
their lives.

*When Rhode Island created a person-driven support system under CSLA in
1987, a whole new world of inclusion opportunities opened up for
Roseanne.*

The Braleys require minimal support from the service system and are
increasingly accepted as full members of their community. They enjoy
gardening, caring for their pets, working in Norman\'s woodshop, and
selling produce from their garden. The *Bangor Daily News* featured them
in a front-page article reflecting the community\'s recognition of the
Braleys\' value as full citizens.

Another success story came from Lucille Stringer of Warren, Rhode
Island, describing the tremendous changes in her daughter Roseanne when
she was able to move from her family\'s home into her own apartment:

*In August of 1993, at the age of 33, our daughter, with bag and
baggage, left our home and moved into a lovely, bright, cheerful
apartment of her choice that she now calls home. Signing her lease and
being handed her key was such a red letter day for her. She had
\"arrived. \" Having her own mail box, checking her messages on her own
answering machine, and having her first pet, a beautiful white cockatiel
bird named Sammy, were all so unbelievable to Roseanne-things we all
take so much for granted.*

*What a wonderful change we see in her! She left us virtually a little
girl and now has developed into a young woman, full of confidence and
self-esteem, and learning to struggle through her problems. She\'s
learning to cook (adding the title of microwave queen), has made new
friends, and invites them to dinner. She teaches sign language to a
friend, exercises regularly at a \"Y\" of her choice, and has even
learned an important new skill-ordering out with delivery service! We
have taken such pride and joy in her accomplishments, all made possible
with daily supports under CSLA, the Medicaid Community Supported Living
Arrangements program.*

Roseanne, who has cerebral palsy and a speech impairment, had finished
her education at a time when few choices were available to her. When
Rhode Island created a person-driven support system under CSLA in 1987,
a whole new world of inclusion opportunities was opened to her. The
things in her life now that make it so wonderful are amazingly simple.

People with mental retardation also are being included in the civic life
of their communities. James Meadours, an individual with mental
retardation, serves his community in a very direct way. He is a VISTA
volunteer with the Tulsa Arc (formerly the Association for Retarded
Citizens) in Oklahoma. He works with People First, a self-advocacy
organization for people with mental retardation and related
disabilities, where he is helping to establish new People First groups
and support existing groups. He also serves on the board of directors
for the Tulsa Arc and The Arc of the United States, as well as serving
as treasurer of Self-Advocates Becoming Empowered, a national
organization of self-advocates. He talked frankly to Academy
participants about how the opportunity for inclusion in community
service had helped him develop:

*People with mental retardation and developmental disabilities have come
a long way. I remember five years ago when 1 joined the board at the
Tulsa Arc. It was my first time to serve on a board of any kind. Inside
of me, I wondered if 1 was going to do well or if I would fail. At
first, I did not understand my role as a board member, but I grew as the
organization grew.*

Academy participants also continued the celebration of the five year
anniversary of the Americans with Disabilities Act (ADA). Bob Williams,
Commissioner of the Administration on Developmental Disabilities,
reflected on his personal fight for inclusion, as well as reminding
Academy participants that our continued effective enforcement of the ADA
is promoting significant progress toward inclusion in every facet of
American life:

*Progress in opening doors which have been slammed in our faces;
progress in creating job accommodations and equal opportunities for
qualified disabled individuals to work, earn a living, and pay our fair
share of taxes; and progress in creating access to a wide variety of
goods, services, and supports both in the private and public sectors
which have never been available to individuals with disabilities or our
families before.*

Several presentations to the Academy highlighted advances being made by
individual States in promoting inclusion while Bob Gettings, Executive
Director of the National Association of State Developmental Disabilities
Services Directors noted the expansion of the individual supports model
through CSIA and the Medicaid Home and Community-Based Services waiver
program. Great differences remain among the States, and within States,
regarding the commitment to inclusion of people with mental retardation
throughout their life span.

Although movement toward inclusion is widespread, however, gains need
constant support and actual progress remains uneven. Lessons learned
from the experience of those who have been successful in promoting and
reaching inclusion need to be available to those further behind on the
journey to inclusion.

*Great differences remain among the States, and within States, regarding
the commitment to inclusion of people with mental retardation throughout
their life span.*

**III. Guiding Principles for Community Inclusion**

The personal stories of people with mental retardation, family members,
and others at the forefront of promoting inclusion reflect benefits from
pro-inclusion State and Federal policies, and the goodwill and support
of individual communities. From these and other presentations to the
Academy, the President\'s Committee has drawn the following principles
to guide future policy and program development:

Principle 1: People with mental retardation have the same basic legal,
civil and human rights as other citizens.

These rights, as for all citizens, should never be limited or restricted
without compelling State interests and due process. Where needed,
additional protections should be offered to prevent injustice, abuse and
neglect.

Principle 2: People with mental retardation are individuals who, like
all other people, have a wide array of interests, needs and
capabilities.

Community services and supports should embrace the diversity among
people who comprise American society today.

Principle 3: Community services and supports respect individual
differences and basic rights of self-determination and autonomy.

Assessment procedures should be utilized that allow and encourage
individual differences to be identified. There should be a menu of
services and supports available that can be tailored to individual
goals, needs and preferences. Adequate resources should be allocated to
allow more than one option for services and supports.

Principle 4: The racial/ethnic/cultural membership of individuals and
their families is respected at all times.

Assessment procedures should be utilized that reflect an understanding
of how cultural values may affect the meaning of information, the
importance of specific recommendations, and who makes decisions and how
they are made. Services and supports should be available that are
sensitive to differing cultural values, practices and priorities.

Principle 5: People with mental retardation are valued members of their
communities.

People with mental retardation should actively participate in all
aspects of community life including school, work, recreation, organized
religious life, and community service.

Principle 6: People with mental retardation live in homes like other
people.

Children should grow up in homes with their families or surrogate
families, with services and supports available to families as needed.
Adolescents and young adults should be prepared for transition to
supported living and/or independent living, as appropriate and desired
by the individual. Adults should have opportunities to live in their own
homes in communities. Aging adults should receive services and supports
that allow them to stay in their own homes.

Principle 7: People with mental retardation receive services and
supports that are tailored to their needs, aspirations and preferences.

Children and adults should have opportunities to explore and develop
their interests, so that they can make decisions about meaningful things
to do with their time. They should be assisted to develop a wide range
of friends and associates. Family ties should be strengthened and
supported. Adults should make real choices about how they spend their
time, how they spend their money, and with whom they associate. Services
should result in positive outcomes as measured by consumer satisfaction.

Principle 8: People with mental retardation are prepared for and have
meaningful and productive work.

Children should have the opportunity to attend preschool and
neighborhood schools with nondisabled peers where they receive an
education based on their individual needs. Youth should be prepared for
the transition from school to the world of work and adult
responsibilities. Adults should have meaningful and productive work
opportunities in the competitive work force, and are valued for their
voluntary service to their communities. Aging adults should have
opportunities to continue employment, if desired; to retire in familiar
communities with members of their social network; and to contribute to
society through voluntary effort.

The President\'s Committee believes that these principles will be useful
to States during this critical period of policy reform. It is our hope
that the events unfolding in Congress and in State capitals will sustain
and build on the gains that have already been made by people with mental
retardation and other developmental disabilities.

**IV. Challenges to Inclusion**

*When we first decided to sponsor the National Collaborative Academy on
Mental Retardation, we thought it was important to focus on State policy
making\... We did not anticipate the degree to which (it) would become
the focus of political changes in Washington nor the extent of the
dramatic shift of power that would be extended*

*to States and local communities.*

Val Bradley, Chair, PCMR.

Since PCMR\'s 1994 Report to the President, our nation has again been
deliberating the appropriate roles of the Federal and State governments
in implementing services for people with mental retardation. Presenters
at our 1995 National Collaborative Academy on Mental Retardation
acknowledged that the Federal/State partnership is changing in very
dramatic ways. Many proposals give much more responsibility than
previous policies to States in determining how Federal funds are spent.

Discussions at the Academy also reflected the many challenges States are
facing:

• Many people with mental retardation are not receiving the services and
supports they need for community inclusion. Relatively few States have
engaged in long-term planning that has fully involved stakeholders in
designing systems that are flexible and able to respond quickly and
effectively to individuals needing publicly funded services and
supports.

• States face enormous challenges in responding to changing
demographics, such as increased demands for early intervention services
for infants and toddlers with developmental disabilities, expanded need
for eldercare services, and the need for competence in reaching out and
serving people of different cultures.

• All States are struggling to meet the demand for qualified personnel,
particularly direct support workers, to serve people with mental
retardation.

• States will receive fewer Federal funds over the coming years to meet
these challenges, as Medicaid funding is likely to be reduced and
capped; welfare reform could restructure public assistance programs and
redefine eligibility requirements; and other Federal human service
spending is likely to be capped or reduced.

• Managed care is moving ahead rapidly, including the expansion into
mental retardation service systems.

These challenges come at a time when gains in inclusion have plateaued
in some areas due to the ongoing challenges of funding constraints,
resistance to change, and the difficulties of redeploying resources.
Advocates and policymakers need to be vigilant to maintain the momentum
for greater inclusion as resources are increasingly constrained.
Although the growing consensus on the value base for inclusion will
continue to help States move forward, they also must be supported in
meeting these challenges.

At the same time, there may be some opportunities to promote inclusion
and to make the system more able to tailor services to individuals.

Pressures to work within Medicaid budgets and in managed care
environments can increase interest in the individual support orientation
and, indirectly, promotion of inclusion. States can focus on preserving
access to the system and to essential services, while efforts to
increase effectiveness and efficiency can emphasize the services valued,
needed and chosen by individuals.

**V. Guidelines on the Journey to Inclusion**

PCMR charged State Teams with the task of addressing how stakeholders
could respond to current challenges to maintain and enhance the support
systems for people with mental retardation and other developmental
disabilities. State Teams reviewed key policy trends and, guided by the
principles emerging from the presentations, outlined each State\'s
planning approach to meet the needs of people with mental retardation
and their families. Their deliberations resulted in six general
recommendations that we offer as guidance to all States addressing
current policy and funding issues.

Guideline 1: Involve all stakeholders when redesigning systems to
provide better services and supports for self determination and
life-long inclusion of people with mental retardation.

All parties who plan, fund, provide, use and assess services need to be
involved in redesigning the service system. Participating stakeholders
should include, but not be limited to, key elected and appointed State
officials, policy-makers, public and private providers of services and
supports to people with mental retardation, representatives of employee
organizations, family members, people with mental retardation who are
self- advocates, and other advocates. Planning groups need to be
broad-based, non-partisan and include minority representation. Involving
people with mental retardation and their families is critical, not only
because it is their lives that are most directly affected by the
decisions being made, but also because they are the ultimate \"experts\"
on the service system and its current strengths and weaknesses. To
enhance their contributions, self-advocates should receive supports for
attendance and participation in all planning and related activities.

Guideline 2: Focus system change plans on children and adults with
mental retardation and their families by incorporating techniques that
offer them options and choices for services and supports in community
settings.

Individual State system change plans should focus on community inclusion
and moving away from segregated environments for children and adults
with mental retardation. People must be supported to exercise their
rights to self-determination and community inclusion. There should be an
array of services and supports available in the community that allow
choice and are tailored to individual needs and preferences. Systems
should be put in place to make the public-and especially people from
diverse and under-represented groups-aware of the options available for
people with mental retardation and their families.

Guideline 3: Make sufficient resources available and use them
efficiently and effectively to eliminate waiting lists for services and
supports.

State Teams called for investigating various means of redeploying
resources as one way to use reduced funds more efficiently. They
recommended assessing the feasibility of using some of the successful
strategies from managed care for providing both acute health care and/or
long-term supports, and exploring options for converting program funds
into cash or vouchers given directly to people with mental retardation
and their families. Current service providers with an investment in
facilities should be assisted in conversion strategies that free up
funds to develop more flexible support models based on individual and
family choice. States also suggested recruiting community members to
provide natural supports to individuals with mental retardation in the
workplace and other community settings.

Guideline 4: Ensure that there are direct support personnel who are
trained, culturally competent, and adequately paid, with opportunities
for career advancement.

States must create and offer personnel development programs that are
responsive to the changing patterns of providing services and supports
to people with mental retardation. Training of direct support workers
and other personnel should be coordinated through the university system,
community colleges, adult education programs, and other means, depending
on locale and need. States should ensure that teacher training programs
prepare all teachers to serve children with mental retardation in
inclusive settings. Technology can also be used to educate the work
force, through distance learning, and satellite transmissions to reach
people throughout the State.

Guideline 5: Empower people with mental retardation and their families
to envision, plan and create inclusive lives, with sensitivity to
individual needs and cultural differences.

An inclusive community requires that people with disabilities be
educated to exercise their rights and responsibilities as citizens,
without a presumption of dependency on others for decisions. People must
be supported to develop their own capacities and competencies for
self-determination. To enable people with mental retardation and their
families to have access to the supports they need, State Teams
recognized the value of advocates/brokers who can empower people with
information on how to access the full range of possibilities for
services and supports.

Guideline 6: Enhance the capacity of communities to welcome and support
people with mental retardation through public education.

States suggested finding opportunities to tell positive stories through
the media about people with mental retardation who are leading inclusive
lives in the community. Public education can help communities to become
more welcoming places for people with mental retardation, and ordinary
citizens will become more willing to become involved in the lives of
people with mental retardation and their families. With changed
attitudes, we can expect that more businesses will hire people with
mental retardation; communities will offer natural supports in
transportation, housing, employment, and recreation; and people with
mental retardation will have improved access to quality health care.

As 1995 ended, active negotiations were ongoing regarding budget
reductions in programs affecting people with mental retardation.

**VI. Current Policy Trends and PCMR Recommendations**

As 1995 ended, the future of Federal funding for many disability
services was uncertain. Active negotiations were ongoing regarding
budget reductions in programs affecting people with mental retardation.
Much of the discussion centered on creating block grant programs and
simultaneously reducing funding to States. The Federal programs Congress
was considering for block granting to States included Medicaid, welfare,
child protection, child nutrition, job training, and possibly
Supplemental Security Income (SSI) for children with disabilities.

To create block grants, the Congress was considering alteration of
existing laws and the enactment of changes that would send funds
directly to States, with fewer Federal mandates on how those funds are
spent. There was discussion of eliminating entitlements, enabling States
to have increased authority to make decisions about who would be
eligible for funds and services. States and local communities would have
greater flexibility in deciding how funds will be spent. Congress also
proposed massive changes in the Children\'s SSI program that would
reduce the types of benefits provided and the number of children
eligible to receive them.

> *The ability of States eligible to finance services is inexorably tied
> to Medicaid policy.*

Bob Gettings, Executive Director of the National Association of State
Directors of Developmental Disabilities Services, Inc.

**MEDICAID REFORM**

Medicaid is a shared Federal/State program that provides acute health
care and long-term services and supports for 4.9 million people with
mental retardation and other disabilities, most of whom qualify because
of limited income and thus are eligible for SSI. States that choose to
provide Medicaid services must meet all Federal Medicaid mandates, rules
and guidelines, while retaining flexibility in selecting optional
services and in defining the amount, scope, and duration of covered
services. At present, there are 12 mandated services, including nursing
home care, inpatient and outpatient hospital services, physician
services, and early and periodic screening, diagnosis, and treatment
(EPSDT) for individuals under age 21.

In addition, Medicaid has 31 optional services a State can choose to
provide, including Intermediate Care Facilities for the Mentally
Retarded (ICFs/MR), personal care services, durable medical equipment,
and a range of rehabilitation services. States can also qualify for
Medicaid waivers that allow them to create their own more innovative
variations for providing services. Under the Home and Community-Based
Services waiver, for example, States are projected in 1996 to serve
approximately 205,000 individuals with developmental disabilities in the
community who would otherwise be in ICF/MR facilities, more than a 50
percent increase from 1994.

Congress has proposed reducing the amount of Federal funds provided to
States for Medicaid, eliminating existing Medicaid entitlements, and
reducing or eliminating the Federal mandates governing how funds are
spent.

**PCMR RECOMMENDATIONS:**

**MEDICAID REFORM**

Medicaid is a cornerstone of funding for services for people with mental
retardation. Revisions in policy will dramatically affect the character
of services. We must ensure that reform efforts are based on promoting
self-determination and inclusion, and that people with mental
retardation and other developmental disabilities retain an entitlement
to services and supports. The Medicaid program should be re­focused as
necessary to promote self-sufficiency, opportunities for community
inclusion, and protection for the rights of full citizenship.

• **Ensure that people with mental retardation retain their eligibility
for services provided under Medicaid**. People must retain their
entitlement to essential services and supports. For many, Medicaid is
their only hope for health care. Private insurance, if offered at all,
is very often prohibitively expensive, and pre-existing conditions
eliminate them from the private insurance market. They must also retain
critically needed long-term supports that are Medicaid-funded, such as
adult day services, personal assistance, and supported living. There is
no private coverage or provision of long term care services.

• **Maintain the quality of services and protections**. Medicaid reform
proposals call for fewer Federal mandates on how to spend available
funds. States need to guard against narrowing eligibility, restricting
the array of supports, or reducing standards of quality for services.
Efficiencies should come from tailoring long-term supports to each
individual\'s unique needs, rather than limiting benefits and
restricting eligibility. People must be protected from abuse, neglect,
and economic exploitation.

• **Permit States to develop new models**. With less Federal money,
States will have to contribute a greater share of funds to simply
maintain the current level of services for people with mental
retardation. States should be permitted and encouraged to redeploy
existing resources in innovative strategies to meet people\'s needs in
community settings.

• **Put families first.** People with mental retardation and their
families must have a voice in determining the services and supports
received by each individual and by the family. Policies need to
recognize that many families depend on Medicaid to lessen their burden
by providing supports and medical services they could not otherwise
afford.

• **Consider the effects on school children**. Major reductions in
Medicaid will have significant consequences for schools. Medicaid pays
for related services such as speech therapy, physical therapy and
assistive technology for thousands of children with disabilities who are
in special education programs. Although schools have under-utilized the
Medicaid program, the loss of those funds will financially strap school
systems currently using it to provide children with such services.

Managed care happens.

Janna Starr, Oregon Advocacy Center, Salem, Oregon.

**MANAGED LONG-TERM CARE**

Managed care involves various strategies to contain or limit health care
costs, such as prior authorization, capitation, and putting providers at
risk beyond pre-set funding limits. Until now, managed care has been
used almost solely for acute health care. Interest is growing, however,
in expanding managed care into long-term care services, including those
used by individuals with mental retardation and their families. The
existing budget pressures in the States, coupled with the likelihood of
decreases in Federal funding, are leading to active development of plans
for managed care in long-term care services.

**PCMR RECOMMENDATIONS: MANAGED CARE**

PCMR recognizes the importance of developing a coherent approach to
long-term care that is strongly linked to Medicaid reform. We reiterate
the principle of providing services and supports tailored to the needs,
aspirations, and preferences of individuals. Long-term services must
focus on supporting people\'s choices in inclusive communities.

• **Include people with mental retardation and their families in
planning a managed care system**. Individuals and families depend on
community support systems that have taken many years to develop. They
must be involved in planning for managed care, to ensure that proposed
managed care strategies do not undermine existing support systems that
enable people with mental retardation and other developmental
disabilities to live as citizens in their communities.

• **Ensure that service systems provide appropriate supports to people
with significant health problems**. States and managed care
organizations have little experience with managed care for people with
mental retardation who may also have specialized health problems.
Incentives under managed care plans to keep costs low may penalize
people with significant disabilities or health problems, for example, by
restricting their access to the specialists most familiar with their
needs. Systems must be designed to provide adequate care to prevent
decline in health and activity levels, to promote expertise in caring
for people with developmental disabilities, and to maintain capacity
levels.

• **Maintain quality-of-care standards**. Medicaid managed care programs
for people with mental retardation must maintain important
quality-of-care standards and consumer protections that have typically
been included under Medicaid law. States must guard against reverting to
outdated custodial models of inappropriate services for individuals with
mental retardation under the guise of cost-saving. They need to ensure
that managed care organizations similarly are required to provide
services in line with contemporary service standards, including the
ongoing promotion and expansion of opportunities for inclusion and the
use of consumer satisfaction measures to monitor quality.

**CHILDREN\'S SSI REFORM**

Several Federal provisions have been debated that could drastically
alter the current Children\'s Supplemental Security Income (SSI)
program. This Federal program ensures that low income families who have
children with qualifying disabilities receive essential monthly cash
subsidies. SSI has made it possible for thousands of families to ease
the challenges of coping with a child with disabilities, thereby
reducing the need for costly out-of-home placements.

There are proposals calling for elimination of cash entitlements for
families, substituting a block grant program for treatment services, and
changing the eligibility requirements to exclude some low income
children with disabilities currently qualifying for Federal SSI
payments. Because most States link Medicaid eligibility to receiving
SSI, these children could be excluded from the Medicaid program as well.

**PCMR RECOMMENDATIONS: CHILDREN\'S SSI**

Children who are disadvantaged both because of their disability and
their poverty stand to lose the most in the current reform movement. The
Children\'s SSI program has been extremely important in helping their
families meet their needs. PCMR supports program refinements that
protect the ability of families to keep children with mental retardation
at home and to make choices on behalf of their children.

*SSI has made it possible for thousands of families to ease the
challenges of coping with a child with disabilities, thereby reducing
the need for costly out-of-home placements.*

• Maintain cash benefits for families of children with mental
retardation. Eliminating cash benefits would greatly reduce family
autonomy and decision-making. They would be unable to obtain essentials
such as food, clothing, shelter and utilities, and for some, dietary
supplements, diapers, and special transportation. The limited treatment
services being proposed would not meet the very basic needs of these low
income families and their children. Simultaneously, PCMR supports
increased accountability from families on the use of cash benefits.

• Ensure that eligibility requirements do not exclude qualified children
with mental retardation. Both houses of Congress propose to eliminate
the Individualized Functional Assessment process that has been used
successfully to determine children\'s eligibility for SSI. More
restrictive definitions for eligibility would deny benefits to an
estimated 170,000 children currently receiving them. These restrictions
would have a devastating impact on children with mental retardation and
their families, since 43 percent (359,871) of the children who now
receive SSI have mental retardation. PCMR affirms the importance of
refining the functional assessment, but strongly disagrees with its
elimination.

• Do not jeopardize the health of children with mental retardation. SSI
eligibility allows most children with mental retardation to receive
needed health services through Medicaid, as well as Medicaid-waivered
services. The loss of Medicaid eligibility may increase the severity of
these children\'s disabilities and could contribute to the development
of secondary disabilities that are preventable with access to adequate
care. PCMR affirms the importance of the eligibility for Medicaid that
is inherent in the Children's SSI program.

**THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT**

The Individuals with Disabilities Education Act (IDEA) is currently up
for Congressional reauthorization. For 20 years IDEA and its predecessor
legislation have guaranteed a free, appropriate public education for all
children with disabilities, including mental retardation. IDEA\'s least
restrictive environment requirements help ensure that children with
disabilities are educated with children who are not disabled to the
maximum extent appropriate. They may be excluded from regular
educational settings only when the nature and severity of their
disability is such that education in those classes with the use of
supplementary aids and services cannot be achieved satisfactorily.

*Inclusion of all children learning together with necessary supports and
services; all children having their unique needs met at the same
setting; all children participating in all facets of school life.*

Linda Frazey, Teacher, Hoxie Community School, Hoxie, Kansas

The least restrictive environment requirements support inclusion by
promoting children\'s education in regular classrooms with necessary
supports and supplementary aids. Unfortunately, the most recent data
reported to the U.S. Department of Education by the States indicate that
only seven percent of children with mental retardation are being
educated in regular classrooms, and another 27 percent are partially
included. The rest are educated in segregated environments, where they
have few opportunities to meet their neighbors.

**PCMR RECOMMENDATIONS:**

**THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT**

The Individuals with Disabilities Education Act achieved access to
education for all children with mental retardation. We must remain
vigilant to ensure that children are not denied access in the future. We
are concerned about proposed modifications to IDEA that would allow
children with disabilities who present discipline problems to be
expelled and potentially lose their right to education. Movement should
continue toward a unified, rather than a dual, school system. Children
with mental retardation should have the opportunity to attend preschool
and neighborhood schools with the nondisabled children in their
communities, rather than be separate and segregated.

• **Protect the right to appropriate education**. The currently
controversial and divisive issue of student discipline should not be
allowed to threaten children\'s right to education. IDEA currently
prohibits schools from indefinitely suspending or expelling children who
present educational challenges because of their disabilities, such as
occasional disruptive behavior. If the policy is weakened, children with
disabilities could be expelled from school, ending up at home or on the
street-precisely the outcomes that the original framers of the Federal
law chose to remedy.

• **Continue support for the policy of inclusion**. Schools have had 20
years to implement the law, yet there are huge variations among States
in their inclusion of children with mental retardation in regular
classrooms. PCMR supports the expanded efforts of the Clinton
Administration to monitor States\' implementation of the least
restrictive environment requirements of IDEA.

**JOB TRAINING CONSOLIDATION**

Congress has agreed on the laudable goal of consolidating the
government\'s more than 100 job training programs into a coordinated
system that uses Federal dollars more efficiently and effectively.
Proposed bills consolidate current programs into block grants and create
one-stop career centers to provide employment services. The Vocational
Rehabilitation State Grant Program, responsible for addressing the
nation\'s need for job training and rehabilitation and, for competitive
and supported employment programs serving people with mental retardation
and other disabilities, came under scrutiny as part of the
consolidation. At present, the program remains essentially unchanged.

**PCMR RECOMMENDATIONS: JOB TRAINING CONSOLIDATION**

Employment is an issue of vital concern to people with mental
retardation. Very little progress has been made in reducing their
unemployment rate of more than 70 percent, in spite of the work success
of many people with a range of abilities. As a result, most people with
mental retardation are poor as adults. Growth in supported employment in
the community has not been matched by a decline in sheltered employment
in segregated settings. PCMR supports efforts to ensure that people with
mental retardation have access to the range of generic supports
available to all who seek employment, as well as specialized assistance
as needed to obtain and maintain employment.

• **Ensure access of people with mental retardation to employment
services in a reformed system**. One-stop career centers, if enacted,
must provide people with mental retardation appropriate accommodations
and services, so that they can benefit from the generic job training and
placement services offered to others. Trained personnel need to be
available in one-stop career centers to meet the unique needs of people
with mental retardation for employment services.

• **Expand employment opportunities for people with mental
retardation**. Traditional programs have only met the needs of limited
numbers of people. Public policy must ensure that people with mental
retardation with a range of functioning levels have sufficient services
and supports available for them in competitive employment or other
community settings, and are fairly compensated. They must have equal
access to participation in the labor force to the same extent as the
rest of the community.

• Make the vocational rehabilitation system accountable. Assure that
people with mental retardation, including those whose disabilities are
severe, work in integrated job settings with fair pay. Enforce
provisions requiring that they have choices about the supports they
need.

*We need more funds so that we can have all the young adults with
disabilities be able to work and be able to do their job well, and also
to have a choice of what jobs they would like to have and enjoy.*

Mary Lynn Gladding, Self-Advocate, Certified Child Care Worker,
Columbia, Maryland

**THE AMERICANS WITH DISABILITIES ACT**

The Americans with Disabilities Act (ADA), often described as the civil
rights law for people with disabilities, bans discrimination based on
disability. Signed into law in July 1990, the ADA gives individuals with
mental retardation and other disabilities civil rights protections like
those provided to individuals on the basis of race, sex, national origin
and religion. It guarantees equal opportunity for individuals with
disabilities in employment, State and local government services, public
accommodations, transportation, and telecommunication relay services.

This past year the ADA became a focus of discussions in Congress on
unfunded mandates, with some members of Congress charging that the
Americans with Disabilities Act was such a mandate. ADA supporters were
successful in obtaining provisions in the Unfunded Mandates Reform Act
of 1995 (Public Law 104-4) clarifying that civil rights legislation like
the ADA, is not an unfunded mandate. This issue may resurface in future
debates, however, along with threats to rewrite the ADA and possibly
weaken its protections.

**PCMR RECOMMENDATIONS: AMERICANS WITH DISABILITIES ACT**

PCMR is aware that a great deal of confusion and misconception exists
around the ADA and the rights it guarantees. As advocates for people
with mental retardation, we must be diligent in helping the Congress and
the public accurately understand this legislation. Until the passage of
the ADA, Federal protections against discrimination based on a person\'s
disability were scattered and very limited. The Congress concluded that
discrimination existed against people with disabilities, and that they
were sometimes denied equal, effective and meaningful opportunities to
participate in society.

• Strengthen implementation of the Americans with Disabilities Act. PCMR
fully supports the Americans with Disabilities Act and supports
President Clinton\'s pledge to veto any legislation that would diminish
its effectiveness. Access to jobs, transportation and public places are
each important for full participation in society. People with mental
retardation must not be denied participation in any of these life
activities based on their disability.

• Erase misconceptions about the ADA. PCMR encourages those who support
the ADA to publicize life stories of people with mental retardation who
are full citizens in their communities, to communicate with Congress
about the benefits to individual citizens, and to educate business
owners about meeting their responsibilities under the ADA cost
effectively.

**VII. PCMR\'s Commitment to States**

With the 1995 National Collaborative Academy on Mental Retardation, the
President\'s Committee on Mental Retardation embarked on an innovative
public education approach for States to encourage life span inclusion of
people with mental retardation in community life. We broadened our
outreach to include non-traditional audiences that influence the success
of State policies, programs and services to people with mental
retardation and their families.

The Academy expanded the knowledge base of all who directly affect
policy development, planning, programs and services to citizens with
mental retardation

in the seven participating States. We will continue to support these
States and others by providing information and encouraging collaboration
and action within States to include people with mental retardation in
all aspects of community life. The experiences of the States that
participated in the Academy in implementing their planned initiatives
will serve to guide States across the nation as they face today\'s
challenges.

**Support for Upgrading the Direct Service Work Force**

We will support States\' efforts to enhance services to people with
mental retardation by nurturing initiatives to upgrade the quality of
the direct service work

force. People with mental retardation need high quality services and
supports provided by skilled and responsive direct support staff.

Since 1994, as part of a national Task Force on Direct Service Workers,
representatives of the President\'s Committee have been meeting with
leaders of national organizations who share our concern about the low
wages, high turnover, minimal training, and lack of career opportunities
for direct service workers in the developmental disabilities field.

Paraprofessionals represent a large segment of the workforce, and often
play a central role within a fragmented service delivery system. From
the perspective of a person with mental retardation or other long-term
disability, the quality of services and supports is frequently dependent
on maintaining a long-term, stable relationship with a skilled,
responsive and compatible direct service worker.

The problems associated with the paraprofessional workforce have been
chronicled for over 25 years, spanning institutional, community-based
and independent living models of service delivery. Indeed, an
experienced, well-trained and motivated workforce may be the single most
important factor in the delivery of quality services, regardless of the
particular service paradigm.

To help develop national consensus, sound public policies, and effective
strategies to strengthen the role of direct service workers within an
evolving service delivery system, the Committee is working with other
national organizations to establish a National Alliance for Direct
Service Workers. The Alliance will include representatives from
professional and provider organizations, consumer and advocacy groups,
academic institutions, government agencies, unions, and private
foundations. Members will work together to develop strategies and
activities to achieve the following goals:

• Provide better access to in-service training, continuing education,
higher education and lifelong learning, for all paraprofessionals.

• Reduce the turnover of qualified personnel.

• Enhance the status and public image of direct support staff.

• Develop nationally recognized standards for the training, practice,
supervision, evaluation and credentialing of experienced direct service
\"master workers.\"

• Facilitate changes in the service delivery system to create portable
career pathways.

• Foster communication and networking among direct service workers from
around the country.

• Increase the active participation of paraprofessionals at national and
regional conferences.

• Improve the advocacy for and the inclusion of direct service workers
in professional associations.

• Disseminate model legislation that provides incentives to agencies for
staff training, salary increases, and career ladders for qualified
workers.

• Promote research projects and publications that focus on the role of
direct service practitioners within an evolving service delivery system.

• Create a national database of direct service workers.

• Strengthen the working relationship and partnership between direct
service workers, self-advocates, and consumer groups.

The importance of appropriately trained direct support workers was
underscored by PCMR member John F. Kennedy, Jr., speaking to Academy
participants:

*I have learned that the voices of direct care workers and self
advocates come from the heart and the soul of the developmental
disabilities field. These groups need to have a far greater role in
determining its future direction. Whether it is in a person\'s home, or
school, or job or local neighborhood, direct service workers provide the
daily support to assist individuals with developmental disabilities to
ultimately lead more active, rewarding lives in their own communities.*

**Support for Self-Advocacy**

PCMR will continue to assist people with mental retardation to create
satisfying lives for themselves. To do this, they must be part of the
national debate that affects their lives. For the first time in the
history of PCMR, two self-advocates are members of the Committee. At
PCMR\'s request, States included self-advocates as members of their
State Teams for the National Collaborative Academy, and self-advocates
were featured speakers in the Academy.

We will continue to support and enhance self­-advocates\' meaningful
participation in our meetings through orientation sessions and other
supports as needed. We will strive to follow the advice self-advocate
James Meadours offered at the Academy, and to encourage others to follow
it as well:

*Listen to us. If you say something over our heads during a PCMR
conference, ask a question to make sure we can understand the issues. If
not, use more words we can understand so we can make our voices heard
and share information. Help us be a part of the group when we need it.*

**Protecting Civil Rights of People with Mental Retardation**

We will continue to fulfill our historic national role in advising the
President and the public about the current status of children and adults
with mental retardation and their families in the United States. This
year we provided our expertise to the nation in many ways as major
changes were considered in Federal policy. We spoke out in particular
about Children\'s Supplemental Security Income, Medicaid and the
Americans with Disabilities Act.

As we reviewed proposed policy changes during our Academy deliberations,
our members repeatedly reminded the participants of the need to do
better with more limited resources. They reiterated that the hard fought
gains of people with mental retardation to full citizenship and
inclusive living could not be compromised. Further, we repeatedly
reminded ourselves and the nation that far too many people with mental
retardation and their families are not yet beneficiaries of these
fundamental opportunities.

Finally, in fulfilling our responsibilities at this time in particular,
we have attempted to serve to some degree as a national conscience. We
well remember that much of the Federal infrastructure created since our
founding occurred as a result of an inability or, in some cases, an
apparent unwillingness of the States to adequately meet the needs of
children and adults with mental retardation and their families. While we
are optimistic that the nation\'s commitment to them has substantially
improved, we will continue to remind all levels of government of their
responsibilities to strive for full community inclusion of all their
citizens. We look forward to continuing our efforts with the States to
help them achieve this outcome.

**Bibliography**

Jaskulski, T., Lakin, K. C., & Zierman, S. *(1995). The Journey to
Inclusion: A Resource for State Policymakers.* Washington, DC:
President\'s Committee on Mental Retardation, U.S. Department of Health
and Human Services.

National Association of State Directors of Developmental Disabilities
Services, Inc. *(1996). Special Supplement to Perspectives, May 1996:
More than 200,000 people with developmental disabilities participating
in HCB waiver program.* Alexandria, VA: National Association of State
Directors of Developmental Disabilities Services, Inc.

Otley, K. *(1995).* \"One man\'s walk through the modern history of
residential services.\" In Jaskulski, T., Lakin, K.C., & Zierman, S.
*(1995). The Journey to Inclusion: A Resource for State Policymakers.*
Washington, DC: President\'s Committee on Mental Retardation, U.S.
Department of Health and Human Services.

President\'s Committee on Mental Retardation *(1996). The National
Collaborative Academy on Mental Retardation: State Collaboration for
Community Membership (draft).* Washington, DC: President\'s Committee on
Mental Retardation, U.S. Department of Health and Human Services.

President\'s Committee on Mental Retardation *(1995). The impact of
proposed changes in the children\'s supplemental security income (SSI)
program on children with mental retardation and their families: A policy
advisory.* Washington, DC. U.S. Department of Health and Human Services.

President\'s Committee on Mental Retardation *(1994). Report to the
President. The National Reform Agenda and Citizens with Mental
Retardation: A Journey of Renewal for All Americans.* Washington, DC:
U.S. Department of Health and Human Services.

Prouty, R. and Lakin, K.C. (Eds.) *(1996). Residential Services for
Persons with Developmental Disabilities: Status and Trends Through
1995.* Minneapolis, MN: Research and Training Center on Community
Living, University of Minnesota.

Smith, G. and Gettings, R. *(1994). The HCB waiver and CSLA programs: An
update on Medicaid\'s role in supporting people with developmental
disabilities in the community.* Alexandria, VA: National Association of
State Directors of Developmental Disabilities Services, Inc.

U.S. Department of Education *(1995). Seventeenth Annual Report to
Congress on the Implementation of the Individuals with Disabilities
Education Act.* Washington, DC: U.S. Department of Education.

**Academy Presenters Cited**

**Norman and Edith Braley, Self-advocates, Maine.**

**Valerie Bradley, Chair, President\'s Committee on Mental Retardation,
Massachusetts.**

**Ann M. Forts, Self-advocate and Member, President\'s Committee on
Mental Retardation, New Hampshire.**

**Linda Frazey, Teacher, Hoxie, Kansas.**

**Robert M. Gettings, Executive Director, National Association of State
Directors of Developmental Disabilities Services, Inc., Virginia.**

**Mary Lynn Gladding, Self-advocate, Maryland.**

**John F. Kennedy, Jr., Member, President\'s Committee on Mental
Retardation, New York.**

**James Meadours, Self-advocate, Oklahoma.**

**Janna Starr, Advocate, Oregon.**

**Lucille Stringer, Parent, Rhode Island.**

**Cathy Ficker Terrill, Parent and Member, President\'s Committee on
Mental Retardation, Illinois**

**Bob Williams, Commissioner, Administration on Developmental
Disabilities, Washington, D.C.**

**PCMR Members and Staff**

**Valerie J. Bradley**

Chair, President\'s Committee on Mental Retardation

President, Human Services Research Institute

Cambridge, Massachusetts

Lorenzo H. Aguilar-Melancon

President, Perspectiva

4400 N. Mesa, Suite 10 & 11

El Paso, Texas 79902

Ph: 915-577-0990

FAX: 915-577-9099

Valerie J. Bradley

President, Human Services Research Institute

2336 Massachusetts Avenue

Cambridge, Massachusetts 02140

Ph: 617-876-0426

FAX: 617-492-7401 <Valbrad@aol.com>

Jane Browning

Executive Director

Maryland Coalition for Inclusive Education

7257 Parkway Drive, Suite 209

Hanover, Maryland 21076

Ph: 410-712-4837

FAX: 410-712-0211

Robert D. Dinerstein, J.D.

Professor & Director of Clinical Programs

American University Washington College of Law

4400 Massachusetts Avenue, N.W.

Washington, D.C. 20016

Ph: 202-274-4141

FAX: 202-274-0659 <rdiners@american.edu>

Steven M. Eidelman

Executive Director

Joseph P. Kennedy Jr., Foundation

1325 G Street, N.W.

Washington, D.C. 20005

Ph: 202-393-1250

FAX: 202-824-0351 smeatjpk@ari.net

Gisselle Acevedo Franco, J.D.

Executive Director, Coalition for a Non-Violent City

236 West Mountain

Pasadena, California 91103

Ph: 818-796-9813

FAX: 818-584-8742, 818-357-0166

Ann M. Forts

P.O. Box 644

Center Harbor, New Hampshire 03226

Ph: 603-253-6722

Joyce Keller

Executive Director

Jewish Association for Residential Care for Persons with Developmental
Disabilities 28366 Franklin Road

Southfield, Michigan 48034

Ph: 810-352-5272

FAX: 810-352-5279

John F. Kennedy, J.D.

President, Reaching Up

434 East 52nd Street, Suite 1 E

New York, New York

10022 Ph: 212-754-6750

FAX: 212-754-0203

K. Charlie Lakin, Ph.D.

Director of the Rehabilitation Research and Training Center on Community
Living Integration

University of Minnesota

214 Pattee Hall, 150 Pillsbury Drive

Minneapolis, Minnesota 55455

Ph: 612-624-5005

FAX: 612-625-6619

> \*denotes Ex Officio Members

Ruth Luckasson, J.D.

Regents Professor and Professor of Special Education

College of Education, University of New Mexico

Albuquerque, New Mexico 87131

Ph: 505-277-7231

FAX: 505-277-8360 ruth@unm.edu.

Elizabeth Pittinger

Regional Director, Step-by-Step

809 Grandview Avenue

Pittsburgh, Pennsylvania 15211

Ph: 412-381-3800

FAX: 412-381-8334 [[ECPITT@aol.com]{.underline}](mailto:ECPITT@aol.com)

Tom E.C. Smith, Ed.D.

Associate Professor Department of Teacher Education

University of Arkansas at Little Rock

215 Crystal Court

Little Rock, Arkansas 72205

Ph: 501-569-3016

FAX: 501-569-8694
[[TESmith1@UALR.edu]{.underline}](mailto:TESmith1@UALR.edu)

Cathy Ficker Terrill

Vice-President of Quality and Strategic Planning Ray Graham Association

683 Prospect

Elmhurst, Illinois 60126

Ph: 708-530-4554

FAX: 708-832-7337
[[75142.447@compuserve.com]{.underline}](mailto:75142.447@compuserve.com)

T.J. Monroe

1156 Waycross Road, Apt. A109

Cincinnati, Ohio 45240

Ph: 513-825-5771

Michael Remus

Director of Special Education

Kansas State Board of Education

120 S. E. 10th Avenue

Topeka, Kansas 66612-1182

Ph: 913-291-3097

FAX: 913-296-1413 [[mremus@smtpgw.ksbe.state.
ks.us]{.underline}](mailto:mremus@smtpgw.ksbe.state.ks.us)

Deborah M. Spitalnik, Ph.D.

Executive Director

University Affiliated Programs of New Jersey

Brookwood II - 2nd Floor

45 Knightsbridge Road, P.O. Box 6810

Piscataway, New Jersey 08855-6810

Ph: 908-235-4447

FAX: 908-235-5059 spitalde@umdnj.edu.

Jacquelin Victorian, MSW

Executive Director, Independent Living, Inc.

474 N. Foster Drive

Baton Rouge, Louisiana 70806

Ph: 504-924-7998

FAX: 504-924-7715

Barbara Yoshioka Wheeler, Ph.D.

Associate Professor of Clinical Pediatrics

University Affiliated Program

Mailstop #53, Children\'s Hospital of Los Angeles

P.O. Box 54700

Los Angeles, California 90054-0700

Ph: 213-669-2300

FAX: 213-953-0439 bwheeler%smtpgate@chlais.usc.edu.

Sheryl White-Scott, M.D.

Director of Adult Health Services Westchester Institute for Human
Development Department of Medicine

New York Medical College

459 West 144th Street

New York, New York 10031

Ph: 914-285-8714

FAX: 914-285-1973

Virginia J. Williams, MA

Senior Advisor

Georgetown University Child Development Center

2500 Wisconsin Avenue, N.W.

#833 Washington, D.C. 20007

Ph: 202-687-5443

\*The Honorable Janet F. Reno

Attorney General

U.S. Department of Justice

10th & Pennsylvania Avenue, N.W.

Washington, D.C. 20530-0001

Ph: 202-514-2001

\* denotes Ex Officio Members

\*The Honorable Robert B. Reich

Secretary of Labor

U.S. Department of Labor

200 Constitution Avenue, N.W.

Washington, D.C. 20210

Ph: 202-523-8271

\*Harris Wofford

CEO

Corporation for National and Community Service

1100 Vermont Avenue, N.W.

Room 6100

Washington, D.C. 20525

Ph: 202-606-5000

\*The Honorable Henry Cisneros

Secretary of Housing and Urban Development

U.S. Department of Housing and Urban Development

451 7th Street, S.W.

Washington, D.C. 20410-0001

Ph: 202-708-0417

\*The Honorable Richard W. Riley

Secretary of Education

U.S. Department of Education

400 Maryland Avenue, S.W.

Washington, D.C. 20202-0001

Ph: 202-410-3000

\*Gilbert Casellas Chair

Equal Employment Opportunity Commission

1801 L Street, N.W., 10th Floor

Washington, D.C. 20507

Ph: 202-663-4900

Fax: 202-663-7022

\*Marca Bristo Chair

National Council on Disability

1331 F. Street, N.W., Suite 1050

Washington, D.C. 20004

Ph: 202-272-2004

Fax: 202-272-2022

\*Shirley Chater

Commissioner

Social Security Administration

1825 Connecticut Avenue, N.W.

Washington, D.C. 20257

Ph: 202-482-7100

Fax: 202-482-7105

\*denotes Ex Officio Members

**Administration for Children and Families**

**President\'s Committee on Mental Retardation**

**Wilbur J. Cohen Building - Room 5325**

**330 Independence Avenue, S.W.**

**Washington, D.C. 20201-0001**

**Ph: 202-619-0634**

**FAX: 202-205-9519**

**Gary H. Blumenthal**

**Executive Director**

**John L. Pride**

**Deputy Executive Director**

**Laverdia T. Roach**

**Special Assistant to the Executive Director**

**State Policy Collaboration Coordinator**

**George N. Bouthilet, Ph.D.**

**Research Director**

**Thelma B. Lucas**

**Minority and Cultural Diversity Subcommittee Coordinator**

**Marci Whiteman**

**Public Awareness and Self Advocate Coordinator**

**Rosa M. Singletary**

**Budget and Administrative Officer**

**Bena Smith**

**Program Analyst**

**Peggy A. Butler**

**Secretary to the Executive Director**

**Angie D. Green**

**Secretary to the Deputy Executive Director**

**Terry A. Lion \* Dina Bergman**

**Clerk-Typist Clerk-Typist**

> **\*U.S. Government Printing Office: 1996 - 715-032/53008**