U.S. Department of Health and Human Services 

Administration for Children and Families 

President's Committee on Mental Retardation 

Collaborating For Inclusion: 

1995 Report to the President 

cover design by Richard Swartz 

text graphics by Kate Billings 
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.

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. 

Sincerely, 

Valerie Bradley 

Chair 

TABLE OF CONTENTS 

Acknowledgements i 

Preface ii 

I. Where We've Been 3 

II. Where We Are 7 

III. Guiding Principles for Community Inclusion 13 

IV. Challenges to Inclusion 17 

V. Guidelines on the Journey to Inclusion 19 

VI. Current Policy Trends and PCMR Recommendations 24 

VII. PCMR's Commitment to States 39 

Bibliography 46 

Academy Presenters Cited 47 

PCMR Members 48 
1,
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 

 

i 
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. 

ii 
PCMR Report Page 1

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. 
PCMR Report Page 2

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 selfadvocates 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
PCMR Report Page 3

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 I 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 I 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 come over. They help us with some things, 

but we make our own decisions. 

Kevin Otley 
PCMR Report Page 4

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 
PCMR Report Page 5

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. 
PCMR Report Page 6

"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 CommunityBased Services waiver rose to 45,203. 
PCMR Report Page 7

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 CommunityBased Services waivers designated to expand services 

in the community for people with mental 

retardation/developmental disabilities. And selfadvocates were increasingly vocal as they challenged all 

of us to accord them respect as individuals as well as 

community membership. 

As we reach the mid1990s, 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. 
PCMR Report Page 8

 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."
PCMR Report Page 9

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 I just set up, I get snacks 

ready, and I 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. 
PCMR Report Page 10

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. 

When Rhode 

Island created a 

person-driven 

support system 

under CSLA in 

1987, a whole new 

world of inclusion 

opportunities 

opened up for 

Roseanne. 

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. 
PCMR Report Page 11

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 SelfAdvocates 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 I 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 I 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. 
PCMR Report Page 12

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: 

Great differences 

remain among the 

States, and within 

States, regarding 

the commitment to 

inclusion of people 

with mental 

retardation 

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. 

throughout their 

life span. 

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 CSLA and the Medicaid Home and 

Community-Based Services waiver program. 

Although movement toward inclusion is 

widespread, however, gains need constant support and 

actual progress remains uneven. Great differences 

remain among the States, and within States, regarding 
PCMR Report Page 13

the commitment to inclusion of people with mental retardation 

throughout their life span. 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. 

Ill. 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. 
PCMR Report Page 14

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. 
PCMR Report Page 15

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 
PCMR Report Page 16

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. 
PCMR Report Page 17

IV. Challenges to Inclusion 

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. 

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 fit] 

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. 

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 longterm 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. 

Val Bradley, Chair, 

PCMR. 
PCMR Report Page 18

 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. 
PCMR Report Page 19

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. 
PCMR Report Page 20

Guideline 1: Involve all stakeholders when 

redesigning systems to provide better services 

and supports for self- determination and lifelong 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, policymakers, 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, nonpartisan 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. 
PCMR Report Page 21

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 selfdetermination 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 underrepresented 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 
PCMR Report Page 22

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. 
PCMR Report Page 23

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 selfdetermination. 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 
PCMR Report Page 24

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 

As 1995 health care. 

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 
PCMR Report Page 25

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. 

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

The ability of States and 

localities 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. 
PCMR Report Page 26

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. 
PCMR Report Page 27

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. 
PCMR Report Page 28

 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. 

MANAGED LONG-TERM CARE 

Janna Starr, 

Oregon 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 

Advocacy

Center, Salem,

Oregon.
PCMR Report Page 29

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 longterm 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. 
PCMR Report Page 30

 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. 
PCMR Report Page 31

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 
PCMR Report Page 32

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. 

 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. 

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.  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.
PCMR Report Page 33

• 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 is 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.
PCMR Report Page 34

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. 
PCMR Report Page 35

 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 
PCMR Report Page 36

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. 

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 

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. 

they would like to 

have and enjoy. 

Mary Lynn 

Cladding, 

Self-advocate, 

Certified Child 

Care Worker, 

Columbia, 

 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. 

Maryland 
PCMR Report Page 37

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. 

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 
PCMR Report Page 38

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 
PCMR Report Page 39

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 
PCMR Report Page 40

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. 

An 

experienced, 

well-trained 

and motivated 

workforce may 

be the single 

most 

important 

factor in the 

delivery of 

quality 

services. 

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
PCMR Report Page 41

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 
PCMR Report Page 42

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. 

 Improve the job skills and cornpetencies of all direct service 

workers. 

 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. 
PCMR Report Page 43

 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- 
PCMR Report Page 44

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 selfadvocates' 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. 
PCMR Report Page 45

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. 
PCMR Report Page 46

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. 
PCMR Report Page 47

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 

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 

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 NonViolent City 

236 West Mountain 

Pasadena, California 91103 

Ph: 818-796-9813 

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

John F. Kennedy, J.D. 

President, Reaching Up 

434 East 52nd Street, Suite 1E 

New York, New York 10022 

Ph: 212-754-6750 

FAX: 212-754-0203 

Ruth Luckasson, J.D. 

* denotes Ex Officio Members 

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 

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 

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 

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 

T.J. Monroe 

48 
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 

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 

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 

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. 

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 

*denotes Ex Officio Members 

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 

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 

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 

*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 

49 
*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 

*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 

*Shirley Chater 

Commissioner 

Social Security Administration 

1825 Connecticut Avenue, N.W. 

Washington, D.C. 20257 

Ph: 202-482-7100 

Fax: 202-482-7105 

*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 

*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 

* denotes Ex Officio Members 

50 
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 

51