The Honorable William Jefferson Clinton 

President of the United States 

The White House 

Washington, D.C. 

Dear Mr. President: 

When John F. Kennedy launched the President's Panel on Mental Retardation in 1961, neither poverty in 

America nor the extent and significance of mental retardation were well researched or understood. In 1969, 

the President's Committee on Mental Retardation produced the landmark publication, The Sir Hour Retarded 

Child, linking mild cognitive disabilities in typical-appearing children with conditions associated with poverty. 

The ensuing years have revealed much about how substandard housing, environmental hazards, lack of 

access to medical care - particularly pre-natal care - poor nutrition, violence and especially alcohol and other 

drugs impact on development. Yet so much remains to be done to ameliorate those conditions. 

In 1999, the President's Committee on Mental Retardation revisited The Six Hour Retarded Child, to assess 

the lives of adults with mild cognitive disabilities living at the fringes of American society. "The Forgotten 

Generation Summit" convened 75 national experts, including adults with mental retardation, to examine the 

consequence of social failure to adequately support these people leading marginal lives. Their deliberations 

are reflected in this document, with many policy recommendations for your consideration that we believe will 

address some of their concerns. 

The plight of those living in poverty was a key concern to PCMR member John F. Kennedy, Jr. To follow on 

the experience and recommendations of "The Forgotten Generation," Mr. Kennedy adopted the concept of a 

PCMR conference on Poverty and Early Onset Disability to be co-sponsored by his Reaching Up Foundation. 

In his absence, the conference will go forward in New York City in February of the year 2000. We dedicate 

this Report to the President 1999: The Forgotten Generation, to the memory of John F. Kennedy, Jr., his life, 

spirit and aspirations. 

Please accept this Report, as we continue to work together to meet the needs of our nation's most vulnerable 

citizens. 

Sincerely, 

Valerie J. Bradley 

Chair 

PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Administration for Children and Families 

Washington, D.C. 20201-0000 
The Forgotten Generation

President's Committee on Mental Retardation 

Administration for Children and Families 

U. S. Department of Health and Human Services 

Nancy Sullivan, Editor and Layout Artist 

Bev Adcock, Co-Editor 

1999 Report to the President 
Table of Contents 

i

Table of Contents i 

Acknowledgements iii 

Voices v 

The Forgotten Generation Summit 1 

Who are People with Mild Cognitive Limitations? 9 

Employment & Economic Security 17 

Housing 29 

Community Living 41 

Criminal Justice 57 

Citizenship & Civil Rights 69 

Psychological, Familial and Spiritual Well-Being 83 

Health & Physical Well-Being 95 

The Final Session 105 

Closing Thoughts 111 

President's Committee on Mental Retardation 117 
Acknowledgements

in

The President's Committee on Mental Retardation takes this opportunity to thank its members Ruth L. Luckasson, J.D., and K. Charlie Lakin, Ph.D., and Professor Alexander Tymchuk,

Ph.D. who organized The Forgotten Generation Conference. Their stature, hard work,

and scholarship made possible the formulation of the excellent recommendations in this Report. 

Our thanks to the Social Security Administration Office of Disability for providing the funds 

to support the conference. 

The frame around which the conference was built were discussion papers prepared by a wide

variety of professionals and scholars in the field who are listed separately in this Report. Their

collected papers will appear soon in a textbook format, edited by Luckasson, Lakin and

Tymchuk. 

Thanks, too, to Dr. George H. Bouthilet, Program Officer, and Deputy Executive Director 

John L. Pride, the staff who implemented the conference plan. 

My personal thanks to Nancy Sullivan, Founder and Executive Director of Empowerment

Network Unlimited, Inc., who translated the proceedings of a complex and often technical

conference into the current highly readable Report, and to Bev Adcock who assisted her in

the project and Hank Bersani, Ph.D. who served as a reviewer. 

The Committee would also like to express its appreciation to Olivia A. Golden, Assistant

Secretary for the Administration for Children and Families for her leadership, commitment,

and support. 

Jane Browning 

Executive Director 

PCMR 
Voices

In creating this publication, graphics from many sources were used, including the following: Art Explosion 200,000® and Art 

Explosion 600,000® by Nova Development Corporation, ClickArt® 200,000 by Borderbund, CorelDrawTM and Corel 

Gallery MagicTM by Corel Corporation, and MasterClipsTM by IMSI Software. 

v

It is easy to objectify the issues raised and the recommendations offered within these 

pages. To do so would be to diminish the importance of the pain, frustration, wonder and 

hope that touch the lives of thousands of individuals with mild cognitive limitations throughout 

this country. The Voices that are threaded throughout this document are snapshots of real 

people leading real lives as individuals with mild cognitive limitations in communities across the 

nation. We deeply appreciate these individuals because it is only through their stories that the 

words contained herein are brought to life. The names of most of these individuals have been 

altered due to the overwhelming desire of people with mild cognitive limitations to remain 

anonymous. 

PCMR would like to extend its appreciation to the people whose lives grace this publication 

and to those who shared their stories, including: Bev Adcock, Valerie Bradley, Jane Browning, Sheryl Dicker, Cathy Ficker Terrill, Amy Fisher, Caroline Hoffman, Moe Mahometa, 

Cathy McLaughlin, James Meadours, Joe Meadours, Mary Nelson, Erin Rager, Nancy 

Sullivan, Susan Kidd Webster, and the Wisconsin Council on Developmental Disabilities. 

Thirty years ago, the 

President's Committee on Mental 

Retardation published a report 

called "The Six-Hour Retarded 

Child." This report brought national 

attention to a group of children who in 

school were identified as mentally 

retarded, but who were abandoned to 

their own resources after school. 

These children appeared so 

"typical" and were generally so 

street "smart" that neither were they 

thought to need any types of specialized supports, nor were supports provided. 

For nearly three decades, the 

country has been investing in 

Americans with substantial cognitive 

limitations. Expanded funding 

created a comprehensive network 

of community services to meet the 

needs of people with mental retardation and developmental disabilities. New Federal and State laws 

that defined and fortified the rights of 

these individuals and underscored 

new programs also funded advocacy 

organizations to address civil rights 

issues. 

Recent laws in the United 

States have often promoted a priority for those with the most severe 

disabilities. This has been done to 

address the problem of people with the 

most severe disabilities being 

excluded from services because 

resources went to serve those who 

had the greatest potential to succeed 

with the least amount of support. The 

new emphasis on serving those with 

the most severe needs first benefited 

this group dramatically. However, 

resources were increasingly limited 

and those with "cognitive 

limitation," including a "mild" 

cognitive limitation who required 

support were frequently excluded. 

As services to people with 

more severe disabilities were rapidly expanding, new services geared 

toward providing support to the 

general population were created. 

Social welfare programs, cash assistance programs, Food Stamps, 

housing assistance, medical services and many other types of supports were designed to help those

"By all accounts, 

adults with mild 

cognitive limitations formed a generation that was 

not only forgotten 

by the disability 

community, they 

were forgotten by 

society." 

-Tymchuk, Lakin & 

Luckasson 

Americans who were living life on

the edge. This included people who

were in poverty, unemployed, in

poor health, exploited, abused, disheartened and confused. 

It was into this changing, confusing world that the "six-hour retarded" children moved as they

dropped out or graduated from

school. Without support, these individuals were faced with great

struggles in making choices, finding

adequate housing, getting and

keeping jobs, obtaining health care,

fitting into community life, maintaining

marriages, and meeting other

expectations that come with adulthood. Though their need for periThe PCMR Forgotten

Generation Summit 

PCMR Report

3
"generic" service system? How 

does the increasing complexity 

of the information age affect 

them? How are they faring as 

the generic supports of welfare 

are being restructured and 

reduced, or even stopped? 

These and many other questions 

led PCMR to sponsor a Summit 

in February 1999 on the 

Forgotten Generation. 

To stimulate thought on important topics within specific areas, a 

number of discussion papers were 

prepared. These papers, listed in 

the shaded box to the right, will be 

incorporated into a book entitled 

The Forgotten Generation: The 

Status and Challenges of Adults 

with Mild Cognitive Impairments 

in American Society, to be published. Themes and key quotes 

from these papers are woven 

throughout the pages of this report 

combined with thoughts and 

recommendations of Summit 

participants. 

To set the atmosphere for this 

important gathering, experts in the 

field of disabilities shared their 

thoughts about the lives of people 

with mild cognitive limitations, 

the challenges they face and how 

society attempts to address some 

of those needs. 

Valerie Bradley 

PCMR Chair 

PCMR Chair Valerie Bradley 

welcomed participants to the 

Summit and thanked them for

taking time from their busy lives 

to address the issues of The 

Forgotten Generation. She 

expressed her pleasure to see 

PCMR addressing the needs of

people with mild cognitive 

limitations, people who have 

been ignored for far too long, 

living only in the shadows of our

thoughts. Bradley urged

participants to read the wealth of

information provided in the 

background papers, examine 

issues, explore alternatives, and

develop recommendations for

change. 

Bradley expressed her hope 

that this Summit would culminate 

in powerful prescriptions that

could lead to an improved quality 

of life for individuals with mild 

cognitive limitations. 

Jane Browning 

PCMR 

Director 

PCMR Director Jane Browning

extended her welcome to participants. She also spoke of the 

important effort that PCMR was 

making to attend to needs so long

ignored. Browning told participants 

odic support continued, such support was a diminishing priority 

within the traditional mental 

retardation service agencies 

(Tymchuk, Lakin & Luckasson, 

1999). By all accounts, adults 

with mild cognitive limitations 

formed a generation that was not 

merely of decreasing importance 

within the disability community, 

they were largely overlooked by 

society. 

The fact that access to 

specialized mental 

retardation/developmental 

disabilities services remains so 

very inadequate for individuals 

with lifelong disabilities who live 

in lower socioeconomic 

households — which includes 

disproportionately people from 

racial and ethnic minorities — 

can be traced to assumptions in 

the 1960s about conquering the 

social ills of poverty. The belief 

at the time was that mental 

retardation was largely the consequence of economic 

deprivation and the only enduring 

solution was to mount a broadbased attack on the root causes of 

poverty, ignorance and 

discrimination. According to this 

theory, people with mild 

cognitive limitations would 

benefit from the rising tide of 

improvements in generic health 

care, housing, job training, 

employment, and public assistance 

programs. Furthermore, by 

remaining outside the formal 

mental retardation service system, 

such individuals would avoid 

being labeled and could then blend 

into the mainstream of American 

society (Gettings, 1999).

How are these people doing? 

Do they find what they need in the 

PCMR Report

4
PCMR Report

We hope that our 

discussions will address how we can 

make our common 

institutions (like

places of employment and community 

organizations) and 

our common 

institutions (like a 

home of one's own, 

intimacy and a 

valued social role) 

more accessible to 

all. 

-Charles Lakin 

term was chosen because it carried

less stigma than mental retardation

and it provided a reference for a

group that was far broader than

that defined as having mental

retardation. 

Lakin challenged Summit participants: "We hope that our

discussions will address how we 

can make our common institutions

(like places of employment and

community organizations) and our

common aspirations (like a home

of one's own, intimacy and a

valued social role) more accessible

to all. We’d like to explore

whether we can create more 

universal design in the social 

aspects of our communities that

bring the kinds of access that universal designs have brought to our

physical spaces." 

Several newspaper articles 

about individuals with mild cognitive limitations in difficult, even 

heart-rending, situations were 

shared with participants, stories 

like this one about a woman 

named Kathy: 

"Kathy has lived most of her

life in a modest bungalow her

parents bought for her 40 years 

ago. Her family put the house in 

her name when her father died so 

that Kathy—who has mild 

mental retardation—would

always have a home. But she is 

now on the verge of losing that 

home. Somehow, after living on 

her own successfully for seven 

years, she stumbled into a 

quagmire of debt—about

$77,000 in the past 2 years—by 

taking out increasingly larger

loans to pay off previous loans. 

In a few months a county judge 

probably will approve the bank's 

foreclosure on her $54,000 

home-equity loans and she will 

have to move. Her older sister

feels guilty that she didn't pay 

closer attention to Kathy's 

finances. She blames a woman 

who apparently bilked Kathy out

of thousands of dollars, but she 

blames the bank even more. She 

is furious that a bank would loan 

so much money to someone so 

vulnerable and naive." Lakin 

noted that stories about people 

with mild cognitive limitations 

appeared on the front pages 

every day—some positive, more 

often in difficult life 

circumstances. 

Lakin ended his remarks addressing the stigma that people 

experience. "People must 

struggle to survive an identity 

that others have given them, an 

identity that is often far too 

limited for their dreams. These 

people must overcome what

alone turn doorknobs, or not." 

"Who dreamed for 

every child a 

chance, 

Cannot let luck 

that, "I lived for a number of

years in Little Rock, Arkansas,

and had the privilege of

becoming well-acquainted with

the poet, Miller Williams. An

old-fashioned liberal, Miller took

the opportunity to admonish his

young friend, the new president,

to retain the kind of government

that could intervene to help those

in need. His inaugural poem

reminded President Clinton that

‘Who dreamed for every child an 

Miller Williams 

Inaugural Poem, 1997 

even chance, Cannot let luck

alone turn doorknobs or not.'"

She continued, noting that this 

quote embodies the purpose of

the Summit—to share our

collective expertise to design

creative ways that generic

service systems can learn how

to "turn those doorknobs" for

people with mild cognitive

limitations. 

K. Charlie Lakin, Ph.D.

Dr. Charlie Lakin

recognized the awkwardness of

the term "mild cognitive

limitations" that was used to

define a broader group than

"mild mental retardation." This 

5
PCMR Report

“Many of the people 

I continue to follow 

are unknown to the 

human service system, yet continue to 

need help of all sorts 

that they do not 

receive.” 

---Robert Edgerton 

"I am struck by how far we

have come since I entered the

field," Edgerton remarked, and then

described a very different world

when he began his research in

1959. He described people who

were among the first to leave the

Pacific State Hospital. These individuals with mild mental retardation—early pioneers in community

living—were virtually thrust into the

community, unprepared and unsupported, challenged to "sink or

swim." They did not have the advantage of the comprehensive community service system that now exists; they had nothing in the way of

supports then. Impressive advances have been made since then,

yet Edgerton cautioned that there

is still much work to be done. 

According to Edgerton, this

"hidden majority" of individuals

who were once labeled mentally

retarded have disappeared from the

view of human service providers.

Some have likely made good adaptations and need little or no help

from such agencies. "Many of the

people I continue to follow are unknown to the human service system, yet continue to need help of 

all sorts that they do not receive." 

Edgerton's remarks ended with 

an introduction to the videotape 

called "Ted's Story." The story is 

about a man with mild retardation 

whom Edgerton met in 1959 when 

Ted was living in a trailer behind a 

bar where he did janitorial work. 

The video chronicles the meaningful life he has led, giving as much to 

others as they have given to him. 

"Whatever we say and do in this 

field in which we have chosen to 

spend so much of our lives, it is 

people like Ted, now seventy years 

old, who must remain at the center 

of our attention." 

Nancy Ward 

Ms. Nancy Ward is the founder 

chairperson of Self Advocates Becoming Empowered, a national selfadvocacy group, and the SelfAdvocacy Coordinator for 

Oklahoma People First. Ward 

congratulated PCMR on taking 

a big step in working with selfadvocates and including them as 

part of the team in the Forgotten 

Generation Summit. She reminded 

the group that self-advocacy 

(people with disabilities advocating 

for themselves) has a rich history 

that self-advocates need to share. 

"PCMR can teach us," Ward 

continued, "how to access the political arena. We feel President 

Clinton has included us in that he 

has done more for us than any other

"Part of the challenge of diminishing handicap 

is that of stigma. 

Stigma deprives 

people of strong 

expectations for 

themselves and 

fair opportunity 

from others." 

—Charlie Lakin 

we believe them not to be able to 

do. And often they must overcome 

what we have tried to teach them 

not to expect from themselves.. . 

Part of the challenge of diminishing 

handicap is that of stigma. Stigma 

deprives people of strong expectations for themselves and fair opportunity from others." 

Alexander J. 

Tymchuk, Ph.D. and 

Robert Edgerton, Ph.D. 

Dr. Alexander J. Tymchuk graciously delivered Dr. Edgerton's

keynote address, as he could not

be present for the Summit due to

serious illness. He reminded the

audience of Edgerton's many accomplishments, including his early

and monumental work— Cloak

of Competence and praised

Edgerton for his tireless efforts in

expanding the body of research in

the field and in educating

tomorrow's professionals. 

6
Susan Daniels, Ph.D. 

Susan M. Daniels, Ph.D.,

Deputy Commissioner for Disability and Income Security Programs, 

Social Security Administration, 

gave the luncheon keynote. Daniels

spoke of a "growing number of

people with disabilities who can

work, and want to work." She 

noted that due to recent advances 

like the Americans with Disabilities

Act, changing attitudes in society

and the rapidly changing world of

technology — today, more than

ever before, "being disabled does 

not mean that you can't contribute

to our nation's economy." She continued, noting that complex barriers to work still remain and the time

is right to "launch new initiatives to

help break through these barriers."

Her vision includes four parts:

(1) Consumer Choice, so that

people can pursue meaningful

careers. 

(2) Encouraging widespread innovations in both the public

and private sectors and collaboration on new and streamlined approaches that minimize

bureaucracy and maximize the

focus on achieving employment. 

(3) Linking outcomes to financial

rewards with an eye toward

stable employment. 

(4) Assuring that health care is

secure, as this is an essential

factor in the choice people 

make of whether to pursue

how to direct my feelings in a positive way. I knew real well how to 

direct my feelings in a negative way."

Concluding, Ward explained

that self-advocates had a leadership

gathering in February 1999. The 

audience included people from diverse cultures and cross disabilities. 

The slogan was "Nothing About Us

Without Us!" She closed noting 

that people with disabilities have the

right to be involved in all meetings

that affect their health, work, home

life, futures and lives. She requested

that this philosophy be one of the 

recommendations that comes from

this Summit —Nothing About Us

Without Us!

"People with disabilities have the 

right to be involved 

in all meetings that 

affect their health, 

work, home life, futures and lives. A 

key recommendation of this Summit 

should be for all human services to 

adopt the philosophy, 

Nothing About 

Us Without Us!" 

—Nancy Ward 

recent President. But there are still

things that he needs to do. PCMR

can help us by paving the way for

the President to hear our concerns.

We need to have PCMR help us

gain the ability to not just be included

in the political arena, but be understood." She also advised PCMR

of the need to use "user-friendly" 

language in their meetings and in

publications, so that self-advocates

can effectively participate in discussions and benefit from information

produced. 

Ward told Summit participants

of a time when she was watching

TV in the late 70s when she was

just beginning to learn how to advocate for herself. "A commercial

came on where they were parading kids with disabilities across the

stage. To me, it was saying give us

money because you feel sorry for

us. The last thing people with disabilities need is for others to feel

sorry for us because then society is

not going to give us the opportunity

to grow. They will never see us as

more than little kids. It made me 

mad and I yelled at the TV. Well

you know what happens when you

yell at a TV—nothing! So, some

friends talked to me about becoming a member of Advocacy First of

Lincoln, which was the local People

First chapter. 

"I suggested that we write a letter to President Carter and [the

sponsoring agency] to get rid of the

commercial. I don't think that our

one letter alone changed this, but

they took the commercial off. This

taught me a very valuable lesson: 

PCMR Report

7
PCMR Report

gainful employment or not. 

"No one should lose health 

care because they desire to 

move into employment." 

Daniels expressed great 

enthusiasm about the 

possibilities for the future 

because of the collective focus 

on innovation and increasing 

opportunities for constructive 

dialogue. She ended her 

presentation with a powerful 

promise: "I pledge my effort, 

and that of my SSA colleagues, 

to work with you to devise new 

approaches to getting real jobs 

for persons with disabilities. 

Our customers are calling..." 

limitations. She reviewed the 

purpose of the Summit, which 

was to generate new ways of 

thinking about the issues facing 

people with mild cognitive 

impairments in American 

society. 

Participants were divided 

into five groups to address five 

broad areas: Employment & 

Economic Security, Housing 

and Community Living; 

Criminal Justice, Citizenship 

and Civil Rights; 

Psychological, Familial and 

Spiritual Well-Being and 

Health and Physical Well-Being. Luckasson explained that 

authors would present a 

summary of the papers 

addressing each issue. Then the 

group should decide on the 

major issues to be addressed by 

the group and discuss a range 

of possibilities that would 

improve the situation for people 

with mild cognitive limitations. 

Finally, each group should 

finalize these recommendations 

and prepare a short report on 

the outcomes to the full group. 

In closing, Luckasson challenged participants to be 

creative in their vision and 

recommendations and wished 

them well in their endeavor. 

8 

Ruth Luckasson, J.D. 

Professor Ruth Luckasson 

extended a warm welcome to 

participants and thanked them 

for their commitment to 

examine issues surrounding 

people with mild cognitive 

“I pledge my effort, 

and that of my SSA 

colleagues, to work 

with you to devise 

new approaches to 

getting real jobs for 

persons with 

disabilities. Our 

customers are 

calling...” 

 —Susan Daniels 

Resources 

Gettings, Robert. (1999). 

Renegotiating the Social 

Contract: Rights, 

Responsibilities and Risks 

for Persons with Cognitive 

Limitations in an Era of 

Less Government in The 

Forgotten Generation: 

The Status and Challenges 

of Adults with Mild 

Cognitive Limitations in 

America. To be published. 

Tymchuk, Ph.D., Alexander 

J., Lakin, Ph.D., K. 

Charlie, Luckasson, J.D., 

Ruth. (1999). Life at the 

Margins: Intellectual, 

Demographic, Economic 

and Social Circumstances 

of Adults with Cognitive 

Limitations in an 

Increasingly Complex 

Society in The Forgotten 

Generation: The Status 

and Challenges of Adults 

with Mild Cognitive 

Limitations in America. 

To be published. 

PCMR Report

Dan and Don 

No explanation of the Forgotten Generation so clearly shows the challenges of people 

with mild cognitive limitations than the story 

of twin brothers Dan and Don. These brothers 

in their 40s are very much alike in many 

ways. The differences that occur are, for the 

most part, slight, like the difference in their 

test scores. When the brothers were tested to 

see if they were eligible for services, Dan's IQ 

came out to be 72 and Don's was 68. 

Although these four test points did not make 

much difference in Dan's and Don's ability to 

learn things, they ended up making a huge 

difference in their lives. 

At the time Dan and Don were 

born, a person with an IQ under 80 

was considered to have mental 

retardation. Later the high score 

was changed to 70. Presto! Dan no 

longer had mental retardation and

he was no longer eligible for mental 

retardation services. 

Still qualified for disability 

services, Don received special 

education in school that concentrated

on "life skills." After school he 

qualified for adult services and 

lived in a group home for a while. Don learned to dress himself

neatly, be well groomed, handle money, ride public transportation,

shop for groceries, cook, have good manners and pretty much take

care of his own needs. He learned work skills and has held the

same job for many years. He never learned to read beyond first 

grade level or to be comfortable speaking to groups. 

Dan's life was very different. He had been receiving special

education; then the IQ level was raised and that support stopped.

He was never eligible for adult services. Dan's parents struggled to 

teach him all the things Don was learning, but were not as

successful. Although usually clean, Dan's hair isn't always

combed, his clothes don't always match, and he cannot cook or

shop on his own. Money in particular is a huge problem. Dan had

his own checking account for a while but was con11
PCMR Report

12

stantly overdrawn. He got credit cards in the mail and soon had more debts

than he could pay. Although Dan has had several jobs, he has difficulty

learning all the things he needs to know and never keeps a job for long. He

reads at a fifth grade level and is quite good at public speaking. 

Dan has had his best success since he and Don started sharing an

apartment because they are able to split duties. His parents continue to

provide major support although they are in their 70s. However, Don is

planning to get married which will leave Dan on his own and once again

dependent on his parents for things he cannot do alone. What will happen

when his parents are gone? 
cognitive limitations in their day-today functioning and who may require interventions and supports 

(Tymchuk, Lakin & Luckasson, 

1999). In his remarks to Summit

participants, Dr. Charlie Lakin explained that the term "mild cognitive limitations" was chosen in an

effort to avoid the restrictions of the

term "mild mental retardation" and

expand the group being identified. 

The label of mental retardation is 

offensive to many people, particularly self-advocates. "Mild mental

retardation" is also more narrow in

focus than the population addressed by the Summit, many of

whom do not fit into a precise definition due to the mild nature of their

challenges. 

People with mild cognitive

limitations may have been identified

in school as having "mild mental

nitive limitations" was

used at the Forgotten 

Generation Summit 

and appears in this publication to facilitate discussion about people 

who have relatively mild 

Among the citizens of

American society is a group of individuals who are, at once, nearly

invisible and highly visible. They are

invisible because they look pretty

much just like everyone else. They

wear many faces, representing all

of the cultures, religions, and ethnic

backgrounds that blend together to

make up our rich national tapestry.

They live in every town, every rural

area, and every metroplex. They

are our friends, neighbors, coworkers, employees, fellow churchgoers

and Little League parents. Their

existence is so much a part of mainstream U.S.A. that we often fail to

notice that these individuals have

mild cognitive limitations and may

need extra supports to accomplish

daily tasks or, at times, even to survive. 

Do not be confused by the

term "mild cognitive limitations."

This term is not meant to describe

a new category of mental disability.

It is not part of the accepted definition of mental retardation nor is it a

term that is approved or preferred

by PCMR. The phrase "mild cogWho Are

People with Mild 

Cognitive 

Limitations? 

PCMR Report

retardation" or "learning disabilities" 

and in need of special services to 

benefit from education. If students

were able to make passing grades 

without special help, however, they

may never have been identified as 

needing specialized services, or

they may have tested "too high" to 

`be eligible for special education. 

These students with mild cognitive

limitations simply muddled through

school and might have been considered "lazy" or "disadvantaged," 

and many dropped out before 

graduation. Attention that might

have been given to learning needs 

in school were rarely available to 

individuals after school ended, 

though the need for them continued

(Edgerton, 1999). 

"Depending on the availability of supports, not only have these

young people been faced with new

13
demands of work, relationships,

and of behavior, but also they

were faced with the realization

that they lacked adequate

knowledge and skills with which

to successfully handle such new

demands" (Tymchuk, Lakin &

Luckasson, 1999). The "typical"

appearance and street "smarts" of

individuals with mild cognitive

limitations led others to see them

as being fully competent and

capable and set the same

expectations of understanding 

and behavior that they held for

those without cognitive

limitations. A desire to be

accepted led people with mild

cognitive limitations to adopt

what Robert Edgerton first called

a cloak of competence, in an 

effort to hide from others hardships in understanding,

communicating, making choices,

managing budgets, building

relationships and working. So by

their own design, those within

this population often became

even more invisible. 

In his discussion about this

"hidden majority" Edgerton

(1999) notes that "everyone

needs social supports whether

from family, friends or human

service agency and research

indicates that these individuals

need a wide array of Supports."

Yet such supports are typically

not there for adults with mild

cognitive limitations. In the

absence of these supports, people

are at higher risk (Tymchuk,

Lakin & Luckasson, 1999). 

Members of this "hidden"

population only become highly

visible when the challenges of

life push them into dire

circumstances and 

Shifting public policies, gaps in resources and 

services, a lack of support have led to these 

individuals being at a heightened risk of: Victimization; Maltreatment; Acts of violence 

against them; Incarceration; Lowered life satisfaction; Lowered living standards; Child removal; Family disintegration; Placement of 

children within foster care; Failures in the 

criminal justice system; Inadequate physical 

and mental health & well-being; Limited competence in parenting skills; Dropping out of 

school; Homelessness; Joblessness; and illiteracy. 

—Tymchuk, Lakin & Luckasson 

the social networks and supports

that they need are not in place. Individuals with mild cognitive

limitations are often unemployed

or underemployed, working only a

few hours a week or from time to

time. As a result they frequently

live their lives in poverty. Unable

to afford adequate housing, these

individuals are plentiful in

homeless shelters, living from 

handout to handout, and as tenants

of federally subsidized housing, 

often located in high crime areas.

Though members of this

population can be wonderful, nurturing parents with support, many

end up in family courts and in

jeopardy of losing children

because of neglect, poverty or

abusive marriages. These 

individuals may have brushes with

law enforcement and can easily be

led into criminal situations that

result in long-term incarceration or

even worse consequences. For many, health care 

comes from emergency room 

visits, free clinics and other

places where prevention and

consistency of health care are 

not emphasized (Tymchuk, 

Lakin & Luckasson, 1999). 

As these adults age, an interesting thing seems to occur. 

People seem to become more 

socially competent as they move 

into their 60s. "With the passage 

of time, communicative and 

interpersonal skills improve, and 

so do the skills necessary for

success in the workplace and

appropriateness in public 

places" (Edgerton, 1999). Older

adults generally are more 

accepted as their limitations—

slow thought, limited memory, 

slow responses, lapses in 

judgment—are more generally 

expected from people in their 

senior years. However this older

PCMR Report

14
generation remains vulnerable to

poverty, often not being able to

afford adequate health care just

when health needs increase

dramatically. 

Recent shifts in public

policy have made individuals

with mild cognitive limitations

even more vulnerable. A key

concept in disability policy is to

serve all individuals with

disabilities, including individuals 

with the most significant disabilities, and to give priority to those

with the most severe disabilities

when funds are limited. A clear

example of this concept is in the

Vocational Rehabilitation system

that must adopt an order of selection if sufficient funds are not

available to serve everyone. 

Entitlement programs, such as SSI,

have always targeted individuals

with the most significant

disabilities (Silverstein, 1999).

People with mild cognitive

limitations are often excluded from

such specialized services. If more

generic supports exist, these 

individuals may not be aware of

them, or how to find help if they

need it. With the current antiwelfare mentality, people with

mild developmental disabilities

are most vulnerable to being

abandoned by governmental

agencies that search for less

inclusive definitions of what

constitutes need (Bogdan & 

Taylor, 1999). 

How many people fall into

this hidden population? The truth

is that we have no idea. How do

we identify a population that does

not typically appear to be different

from the general population? 

Sometimes limitations are clear;

much of the 

time they are neither clear nor

linked to the concept of any 

particular disability. It is unlikely 

that people who often try to hide 

their learning difficulties from

others would willingly be 

counted among this population. 

While it has been relatively easy 

to gather data on how many 

children receive special 

education for mental retardation, 

learning disabilities or mild 

behavioral problems, identifying 

dropouts or those on the margin 

of passing is not so simple. To 

complicate the situation, today 

many school districts no longer

identify kids as having mild 

mental retardation. Instead they 

are "learning disabled," 

"intellectually handicapped" or

"cognitively impaired"—broad

titles that can include a variety of

disabilities. The 1997 

Amendments to IDEA lets schools 

label children ages 3-9 as 

"developmentally delayed." This 

loss of a specific label even while 

in school will make the challenges 

of knowing how many people we 

are talking about and how they are 

affected even harder. 

In defining this Forgotten 

Generation, the reference has been 

made that this population includes 

"six-hour retarded children" from 

years ago who have reached

adulthood. The perception is not 

meant to be limiting, for this is a 

population spanning all 

generations. Children who are 

only now in special education 

face the same uncertain futures 

and lack of supports as they 

move into adulthood as those 

who graduated from special 

education so many years ago. 

Without action, the situation will 

continue. 

The issues that face adults 

with mild cognitive limitations 

are incredibly complex. In the 

pages that follow, issues that 

arise in various areas of life—

employment, housing, 

community life, health, and 

others—are more fully explored. 

In each section, the 

recommendations made by 

Forgotten Generation Summit 

participants are proposed. The 

recommendations in this report 

represent mere starting points, as 

there may be many solutions 

beyond these. However, if these 

recommendations are translated 

into action, they can have a 

powerful impact on the lives of 

people with mild cognitive 

limitations and can go a long way 

to enabling the adults of today, 

and those of tomorrow, to lead 

more satisfying, less challenging 

lives. 

PCMR Report

15
Bogdan, Ph.D., Robert and Taylor, Ph.D., Stephen J. Building Stronger Communities for All: Thoughts 

About Community Participation for People with Developmental Disabilities in The Forgotten Generation: The Status and Challenges of Adults with Mild Cognitive Limitations in America. To 

be published. 

Resources 

PCMR Report

Edgerton, Ph.D., Robert B. "The Hidden Majority" of Persons with Mental Retardation/Developmental Disabilities in The Forgotten Generation: The Status and Challenges of Adults with Mild 

Cognitive Limitations in America. To be published.

Silverstein, J.D., Robert. Our Nation's Emerging Disability Policy in The Forgotten Generation: The 

Status and Challenges of Adults with Mild Cognitive Limitations in America. To be published.

Tymchuk, Ph.D., Alexander J. Family Life: Experiences and Outcomes of People with Mild Cognitive 

Impairment in The Forgotten Generation: The Status and Challenges of Adults with Mild 

Cognitive Limitations in America. To be published.

Tymchuk, Ph.D., Alexander J, Lakin, Ph.D., K. Charlie, and Luckasson, J.D., Ruth. Life at the Margins: Intellectual, Demographic, Economic, and Social Circumstances of Adults with Mild Cognitive Limitations in an Increasingly Complex Society in The Forgotten Generation: The Status 

and Challenges of Adults with Mild Cognitive Limitations in America. To be published. 

16
Employment

and Economic

Security

17 
PCMR Report

Thomas is 38. He was 

identified as having mild 

mental retardation and 

received special education in 

school. After leaving school, 

Thomas was not eligible for 

adult services but he found a 

part-time job at a fast food 

place and a part-time job as a janitor at a store. He worked hard but 

neither job provided health care benefits. For a while, Thomas did pretty 

well. Although only making slightly above minimum wage, he managed 

to move out into an apartment with a friend. 

A few months ago Thomas lost his janitorial job. The business 

wanted to save money and decided to have their other employees split 

the janitorial duties. Thomas could no longer afford to pay his share of 

the apartment expenses and could not find another job. He still had the 

part-time job at the fast food place, but was forced to move back in with 

his mom. His father died several years ago and his mom has limited 

income so Thomas has to use part of his income to buy utilities and 

groceries. 

Thomas deeply resents not having as much money as he used to 

have when he had both jobs, especially now that he has more free time 

and wants to go out and do things. He blames his mother for taking his 

money and often yells at her when she won't give him as much spending 

money as he wants. Recently Thomas wandered into one of those 

quickie loan places that don't require collateral. He came out with $100 

and was very happy for a while. When the money ran out, he tried to 

borrow again, but was turned down. He went to a similar company and 

borrowed another $100. When that was gone, he borrowed $100 from a 

third place. His mother only discovered this when the companies came 

to collect because Thomas had not been making payments. Thomas is 

now thousands of dollars in debt because the papers he signed included 

an agreement to pay 300% interest per day on the unpaid balance. The 

companies are threatening to file suit and have even threatened 

Thomas's mother. He will probably have to file bankruptcy in order to 

avoid the debt. 

Thomas

19
Andrew has had a good life with a loving family. He was in

special education in school, but when he got out, he hated being considered disabled. Now, as a young adult, he knew he could make it on

his own if he could just get a job. He was right. 

Andrew's parents recognized their son's desire to stand on his 

own and supported it wholeheartedly. Andrew didn't want to go 

through vocational rehabilitation services so his mother contacted their

local chapter of The Arc and asked if they knew about any jobs that

might be right for Andrew. Though they had no leads at the time, the

director promised to contact her with any prospects. That very afternoon the call came that a new Marriott hotel was opening in their Southern

city in several months. Job interviews were to start the next day and

they welcomed people with disabilities. 

Andrew was hired on the spot and began his career by washing

dishes in the restaurant. That was 11 years ago. Since then, he's had

numerous raises and promotions. He also has full benefits. Andrew

was not just hired as an employee; he quickly became a valued member of the hotel staff. He participated in all of the employee activities, 

like company picnics and parties, and won "Employee of the Month" 

several times during his tenure. With a stable income, Andrew was 

able to move into an apartment—he could make it on his own. In the 

last few years, Andrew's parents, who continue to provide great support for him, retired and moved to another city. 

Andrew chose to stay with his job and 

his apartment—the life he had built. 

While Andrew sees his family 

frequently, he continues to lead 

his own life as a valued 

employee, friend and 

member of the 

community. 

Andrew 

PCMR Report

20
Employment and 

Economic Security 

PCMR Report

When we meet someone new 

one of the first things we want to 

know about them is where they work 

and what they do for a living. Where 

a person works is an important part of 

who they are and how people think of 

them, and it is the key to whether they 

will have enough money to live as 

they wish. Those with prestigious or 

high paying jobs are more highly 

valued in American society than those 

doing menial labor or earning low 

wages. People with mild cognitive 

limitations, already forgotten by 

society, are seen as even less 

important because many have no job 

or receive very low pay. Why aren't 

they working? 

Recent studies confirm a 

continuing and troublesome trend 

toward high rates of unemployment 

or underemployment for former 

recipients of special education 

services (Rogan, Leucking & Held, 

1999). Many of them will be people 

with mild cognitive limitations. 

Obviously success in school affects our ability to find a job. While 

the Individuals with Disabilities 

Education Act (IDEA) has greater 

emphasis on transition services and 

preparing students with disabilities 

for life, what about students with mild 

cognitive limitations who are not far 

enough behind academically to 

qualify for special education? They 

could greatly benefit from school 

work experience programs but 

schools have returned to a focus on 

the education "basics" and this has 

meant less focus on vocational skills 

and work experience programs 

(Kregel, 1999). 

Students with mild cognitive 

limitations usually have schedules and

curricula similar to general education 

but are not always given support 

services or activities that will help them 

succeed. They often fall behind. Schools 

frequently leave students with 

disabilities out of vocational education. 

Even when students with mild cognitive 

limitations are in vocational programs, 

many of them leave school unemployed

or with part-time, entry-level positions. 

A high percentage of youth with mild

disability labels flunk out, get expelled,, 

or drop out of high school (Rogan, 

Leucking & Held, 1999). 

Where a person works is 

an important part of who 

they are and how people 

think of them, and it is the 

key to whether they will, 

have enough money to live

as they wish. 

In 1996 Congress created a block 

grant program to assist the states in returning able-bodied adults on welfare 

to work. States have broad authority to 

determine the most effective way to 

reduce their welfare caseloads. So far, 

caseloads have declined at a much 

faster rate than originally anticipated 

but it is not clear if this is due to the 

success of the work programs states 

have initiated or due mainly 

21
PCMR Report

Employment & Economic Security 

to the strict time limits for how long 

people may receive assistance. One fact 

is clear: the booming national economy 

and the low unemployment rate and 

high tax collection it has produced has 

cushioned the impact of welfare reform. 

Blessed with huge surpluses, many 

states have been able to offer welfare 

recipients intensive job training and 

placement services, subsidized childcare, and other social supports to help 

them return to work (Gettings, 1999). 

What will happen when this stops? 

The disability service system has 

programs such as supported

employment or sheltered workshops to 

help people learn work skills and earn 

money, but people with mild cognitive 

limitations usually do not qualify for

either program. Without qualifying for

disability services, they have no 

meaningful place to spend their days, 

and need government benefits or help 

from their families to survive (Kregel, 

1999). 

The few students with mild 

cognitive limitations who do manage to 

qualify for work programs after leaving 

school face additional barriers. There 

are long waiting lists for services and

they lose skills and abilities while 

waiting (Kregel, 1999). Those who get 

into services often end up in segregated

sheltered workshops or activity centers 

that pay even less than minimum wage 

and don't prepare them for jobs in the 

local workforce. The few who do get 

jobs have low paying entry- level 

positions with little hope of advancement or raises (Kregel, 1999). 

Some people with mild cognitive 

limitations qualify for disability 

benefits through Social Security 

Disability Insurance (SSDI) or Supplemental Security 

Income (SSI). Less than 1% return to 

work. One reason for this is that the 

way the programs are designed 

actually discourages employment. 

Working should help people make 

more money and need less help. 

However, many times people are 

actually worse off being employed 

because the disability programs are set 

up to take away money or benefits if

people attempt to work. (Kregel, 

1999). Many times they lose more 

benefits (health care, housing, 

childcare) than they earn in work

income. 

Too many jobs do not offer

health benefits especially if the job 

pays minimum wage or is part-time. 

Yet these are the jobs people with mild 

cognitive disabilities are most likely to 

get. Individuals should not have to 

choose between having a job and 

getting health care and the other

support services they need, but this is 

the choice many people with mild 

disabilities face. 

The good news is that the area of

employment holds great hope for solving many of the problems faced by 

people with mild cognitive limitations. 

If we can remove many of the barriers 

they face to employment, they will be 

able to earn enough money to be 

independent and the current economy 

is ideal. More jobs have been created 

in the last eight years than in any other

time period this century (Wehman, 

Targett, Eltzeroth, Green, Brooke, & 

Barcus, 1999). According to Wehman 

et. al. (1999) when the Vice Chair of

the Federal Reserve (Rivlin, May 12, 

1998) is quoted as saying "... at the 

rate businesses are hiring, the U.S. 

economy will soon run out of

workers..." there is something terribly 

wrong, or at

22
Employment & Economic Security

least highly inefficient with a labor

market where large numbers of

people with disabilities remain

unemployed. 

Resources 

Gettings, Robert M. (1999). Renegotiating the Social Contract: Rights, Responsibilities 

and Risk for Persons with 

Mild Cognitive Limitations 

in The Forgotten Generation: 

The Status of Adults with Mild 

Cognitive Limitations in 

America. To be published. 

When employers do hire people

with mild cognitive limitations the

accommodations they need in order to

work are free or very low cost. This is

because the accommodations needed

are for employers to explain things in

clear, simple language, make sure they

understand what they are to do, allow

them a slightly longer time to learn

routines or process information, and

make sure they feel comfortable

enough with co-workers or bosses to 

ask for more direction when needed.

Other accommodations might include a

quiet place to work or having a

checklist of what they are to do

(Wehman, Targett, Eltzeroth, Green,

Brooke, & Barcus, 1999). 

Employers are in need of

workers and people with mild cognitive

limitations are in need of jobs. Our

challenge is to remove the barriers that

prevent these two groups from getting

together so that people with mild

cognitive limitations can be

successfully employed. 

PCMR Report

Kregel Ed.D., John. (1999). Freedom to Work: What Government and Employers Can Do 

to Assure Income and Health 

Security While Providing Opportunities and Rewards for 

Employment in The Forgotten 

Generation: The Status of Adults 

with Mild Cognitive Limitations in 

America. To be published. 

Rogan, Pat, Ph.D., Leucking, Richard and Held, Mary, M.S. 

(1999). Career Development: 

What Schools, Agencies and 

Employers Can Do to Help 

People Identify, Select, Prepare For and Continue to 

Grow in Careers That Offer 

a Future in The Forgotten 

Generation: The Status of Adults 

with Mild Cognitive Limitations 

in America. To be published. 

Wehman, Ph.D., Paul, Targett, —

Pam, Eltzeroth, Helen, 

Green, Howard, Brooke, 

Valerie, and Barcus, J. 

Michael. (1999). Support on 

the Job: What Business, Industry and Government are 

Doing to Support People with 

Mild Cognitive Limitations to 

Achieve Economic Self-Sufficiency Through Employment in The Forgotten Generation: The Status of Adults 

with Mild Cognitive Limitations 

in America. To be published. 

23
from school to work, for all high

school students. Career development and transition plans for all students should be driven by the talents,

interests and needs of the individual.

 Urge schools to put primary emphasis on providing training to prepare

all students for successful careers.

Upon transition, generic and specialized resources should be identified

that provide continuing supports

needed for the individual to pursue

desired career moves. 

 Increase the participation of individuals with mild cognitive limitations in

school-related programs funded under the School to Work Opportunities Act, the Department of Labor's

Employment and Training Administration programs and the Department

of Education's Office of Vocational

Education. 

 Encourage individuals, family members, educational personnel, employers, and adult service agency representatives to work together to ensure

that people have lifelong access to the

community supports they need to

pursue careers. 

School to Work 

Transition Programs

Public school systems 

are not doing a good job 

preparing students—

including those with disabilities—to transition 

into successful employment and community 

life as adults. 

RECOMMENDATIONS: 

 Make schools accountable for their 

transition efforts based on the outcomes of students with a philosophy 

of "everyone graduates with a job." 

Schools and cooperating agencies 

should receive recognition including 

financial incentives for individuals who 

are successfully placed into competitive employment opportunities and 

sanctions for those whose transition 

programs wither. For schools that 

place little emphasis on transition or 

whose transition efforts consistently 

meet with little success, stringent measures should be taken to suspend or 

withhold federal funding until energies 

are refocused on generating successful outcomes for people. 

 Develop individualized educational 

plans, including plans for transitioning 

Recommendations in Employment

and Economic Security 

PCMR Report

24
PCMR Report

 Work with the National Association 

of Employment Assistance Programs 

and similar groups to enhance the focus on supports for people with mild 

cognitive impairments as part of their 

nurturance of all employees. 

 Expand and enhance school-business 

partnerships to include all students not 

just those without disabilities. 

 Identify and replicate model programs 

that are working to develop long-term 

partnerships between the business 

communities and providers of supports. This enhances the capabilities 

of the workplace to embrace individuals with mild cognitive impairments. 

 Expand the current Work Opportunities Tax Credit so that the economic 

incentives to employers are equivalent to that provided by the Welfare 

to Work Tax Credit. 

employee training, mentoring programs, employee orientation, development of interdependent or shared

jobs and the development of natural

supports. 

Employment and Economic Security 

needs. 

RECOMMENDATIONS: 

 Develop creative partnerships between individuals, schools, service 

agencies, businesses, industry and 

others to address the needs of people 

with mild cognitive limitations. 

 Help employers develop effective 

strategies to employ individuals with 

mild cognitive limitations that are responsive to their specific needs. 

These supports might include, but 

certainly are not limited to, modified 

or expanded workplaces, job accommodations, assistive technology, 

training and supports

for all employees and 

build the employer's capacity to provide long

term supports to employees with specialized 

Building 

Partnerships 

Involving the business 

community in partnerships to employ people 

with mild cognitive limitations can; work to educate them about the advantages of workforce 

diversity, encourage 

staff sensitivity to individual needs, strengthen 

25
PCMR Report

Employment and Economic Security 

Training and 

Support Support for 

Employers 

RECOMMENDATIONS: 

 Hold all government agencies and 

service providers accountable for 

high quality employment outcomes 

for individuals. Impose financial 

sanctions when programs 

consistently fail to improve the 

employment situation for 

individuals with mild cognitive 

limitations. 

 Provide integrated, competitive 

employment opportunities for 

individuals with mild cognitive 

limitations. 

 Assure that necessary training and 

supports, including life-skills and 

literacy training, are available in 

school and throughout life. 

 Adopt the "Nothing about us 

without us" philosophy and 

promote the involvement of 

individuals with mild cognitive 

limitations in the design, 

development, implementation and 

evaluation of employment 

supports and services. 

Quality training and 

support programs for 

people with mild cognitive limitations can 

have a powerful impact 

on successful employment. 

Many employers would 

be willing to employ 

people with mild cognitive limitations if they 

had the support and 

technical assistance in 

areas such as training, 

job accommodations, 

on-the-job training techniques, supervision 

strategies and other areas that impact successful employment.

RECOMMENDATIONS: 

 Train potential employers, service 

providers, educators, and the 

general public to interact 

effectively, support and assist 

individuals with mild cognitive 

limitations. 

 Provide employers convenient access to the information and 

technical assistance they need for 

training, supporting and 

accommodating employees with 

cognitive limitations. 

 Expose the myths surrounding 

individuals with cognitive 

limitations and promote healthy, 

positive images and accurate 

information regarding these 

individuals and their potential to 

achieve successful employment. 

26
Employment and Economic Security

 Promote an array of demonstration 

projects and the use of their findings 

to remove the walls between 

funding streams. 

 Assure that accessible, dependable 

public transportation systems, 

including paratransit systems, are 

readily available to individuals with 

mild cognitive limitations 

throughout the country. 

PCMR Report

for benefits should they lose their jobs 

and be unable to return to work in the 

future. 

Create employment incentives for individuals who do not require income 

support, but need long-term health care to 

meet their medical needs while working. 

 Enable individuals whose benefits stop 

due to employment to remain eligible 

Work Disincentives

Many people who receive 

public benefits and attempt to return to work 

are threatened not only 

with loss of income if 

they return to work, but 

loss of health coverage, 

subsidized child care and 

other benefits. 

RECOMMENDATIONS: 

 Develop strategies to move

individuals from welfare to

competitive employment using 

proven methods. 

 Establish Medicare and Medicaid

buy- in programs that will provide

consumers long-term access to 

required health care. 

27
Housing
Althea works 10-15 hours a week at a minimum wage 

job. If she didn't work, she'd never be able to make it. She

and her son struggle since there's no child support to help.

Her son's father is in prison. Althea's wages from work are

too high for her to get Food Stamps. Although she is able to 

work some, she now makes less than what she received

through her son's Aid to Families with Dependent Children

(AFDC). The more money she makes, the more her SSI

goes down, her rent goes up and the cost of childcare

increases. Althea works hard despite the challenges she 

faces but she feels like she is drowning in increasing costs

and shrinking income. She worries all the time about her

son's future, and her own. 

Althea 

PCMR Report

31
PCMR Report

A Vietnamese orphan, Matthew was adopted as a baby by an

American military couple. Later, he was removed from their home

because his adoptive family abused him. At 18, Matthew was on his

own; he was all alone. He received special education services in

school in his Western state but because his cognitive limitations are 

mild and he is very well spoken and can take care of himself, he

never qualified for adult disability services or for SSI. When

Matthew left school, he got a job working for a roofing company.

He was sharing a house with some friends and getting by fairly well. 

One day there was a bad accident at 

work and a bucket of hot tar was

spilled on Matthew. He received

3rd degree burns on the right

half of his face, his right arm and 

chest and a few other places

where the tar splattered. 

Matthew had no health 

insurance. The company not 

only fired him but also refused 

to let him file a claim under 

worker's compensation. The 

company later filed 

bankruptcy. Matthew's 

"friends" threw him out of the 

house when he got behind on 

the rent and he ended up on the 

street. He needed skin grafts 

and physical therapy to avoid 

losing the use of his hand. 

32

Someone gave Matthew the phone number of a local advocacy

group. Homeless, he called to ask for help finding a place to live. 

After a lot of advocacy on his behalf over a three-year period, 

Matthew began to draw worker's compensation. After one more year

he will be eligible for lifetime benefits. He is also now on Social

Security Disability Insurance (SSDI). 

Matthew's situation is a good example of the frustration that

often occurs when people are applying for assistance. Worker's compensation wanted to use Matthew's Social Security eligibility as the

way to qualify him for benefits and Social Security wanted to use his 

worker's 

Matthew 
PCMR Report

comp eligibility to qualify him for disability. It took some very fast "tap

dancing" by advocates to convince worker's compensation to give Matthew

coverage for medical care related to the burns so he was able to get physical

therapy and many skin grafts. 

Though Matthew now has enough income to survive, most of it goes 

for housing. To afford the apartment, he must have roommates. His present

roommates are taking advantage of him by talking him out of money,

running up his phone bills and stealing his belongings. Advocates have urged

Matthew to move into a situation in which he is not exploited, but Matthew

prefers living with these people to being alone. He is currently in debt

because one of the housemates convinced him to borrow money for her from

a loan company at a huge interest rate. Whether he will be able to continue to 

afford this place to live, no one knows. 

Matthew's medical problems have gotten worse. He began having chest

pains, which were diagnosed as panic attacks. At the insistence of his

advocate, Matthew had a stress test to rule out heart problems. He had a heart

attack during the test and had to have open-heart surgery. Medicare did not

cover all the costs and he now has large hospital bills on top of a soaring loan

amount. Matthew also has high cholesterol and is supposed to be watching 

his diet. That is not going well as all the foods he loves best are on the

forbidden list. The only thing certain in Matthew's future is that he continues

to need strong, powerful advocacy. 

33
Housing

PCMR Report

Where and how we will live is 

something to which all of us give a 

great deal of thought, time and the 

major part of our income. Long before 

we move out of our parents' homes, 

we dreamed of where we would live, 

how many closets we would have, 

how big the yard would be, and how 

close we wanted to live to school, 

work, shopping malls and grocery 

stores. As our income increases (from 

getting a raise in salary or winning the 

lottery), most of us will spend at least 

part of the income on furniture, paint, 

wallpaper, or even moving to a more 

expensive place. Our homes are a very 

important part of who we are. But what 

is it like for people whose housing 

choices are limited or don't exist at all? 

For people with low incomes 

housing is not a matter of choice but a 

matter of what you can afford. Most 

people with mild cognitive limitations 

live with aging parents, in poor 

quality housing, or in crowded 

homeless shelters. The few who are 

lucky enough to have housing may 

pay 75% or more of their monthly 

income for rent. The most serious 

housing problems are in households 

with the lowest incomes, which 

include many people with mild 

cognitive limitations (Galbraith, 

1999). 

The major barrier faced by individuals with mild cognitive limitations 

in housing is low income. 

Supplemental Security Income (S SI) is 

by far the primary source of income for 

millions of people with disabilities. If a 

person is on SSI, his/her maximum SSI 

income is $494 a month. This is equal 

to an hourly wage of $3.09 — more 

than $2 below 

deny rental applications when the rent

would take more than half of the 

person's income (Galbraith, 1999). 

People with mild cognitive 

limitations face an even greater

challenge: unless they have a 

secondary disability, they cannot even

get SSI. If they were able to earn

sufficient money working (up to $700 

per month before their SSI is reduced), 

this would not be a problem. But just

as they have difficulty getting on SSI, 

they are also less likely to be eligible 

for work programs and so have little 

chance to learn work skills. 

Using HUD Fair Market 

Rents as the standard 

for modest rental 

housing, NOWHERE in 

the U.S. can a person 

living on SSI rent a 

one-bedroom 

apartment for less 

than 50% of his or her 

income. 

minimum wage. HUD considers a person 

to have a very low income if his/her 

income is half of the average income. But 

even this is more than twice as much 

money as the average SSI recipient gets. 

Using HUD Fair Market Rents as the 

standard for modest rental housing, nowhere in the U.S. can a person living on 

SSI rent a one-bedroom apartment for less 

than 50% of his or her income. This is a 

crucial problem because landlords and 

housing management companies usually 

34
Housing

PCMR Report

Many adult vocational and 

35

low-income people who worked found 

themselves unable to afford housing. 

Without SSI and without the 

ability to earn enough money to afford 

housing, many people with mild 

cognitive limitations are dependent on 

the welfare system. Because they often 

fall through the social service cracks — 

either by accident or because of the 

way public policy is determined — 

people with mild cognitive limitations 

face the same problems faced by 

anyone who is poor and not well 

educated. Temporary Assistance to 

Needy Families (TANF) has replaced 

the old welfare system. However, 

people on TANF must be in a work 

program and there are lifetime limits on 

how long a workforce training programs with no exc established with federal funding do difficulty le not serve individuals with mild Housing su cognitive limitations. As a result, TANF eligi many of them are unemployed or housing sub employed only once in a while. 

Others may be working for only a Betw

few hours a week. If they are was a 9% re

affordable f employed, it is usually for minimum add to t wage. Although full-time work Congress h should give a person enough income programs t to afford a decent place to live, a between w HUD study found a disturbing trend low-income in the opposite direction. Between (Galbraith, 1991 and 1995, when most of the At a 

nation was becoming better off on people financially, more regular ho

Between 1991 rather tha

and 1995, when most changes to

mean there of the nation was be housing ava coming better off financially, more low-in- Feder

come people who of federally

people with worked found them- only to elde selves unable to afford

housing. 

person can receive checks 

eptions for people who have 

arning or chronic problems.

bsidies are often tied to 

bility. But even getting a 

sidy may not help. 

een 1993 and 1995 there 

duction in housing that was 

or low-income families. To 

he problem, since 1995 

as stopped new funding for 

hat help pay the difference 

hat housing costs and what 

 families can afford 

1999). 

time when the emphasis is 

with disabilities living in 

using in the community 

n in costly institutions, 

 federal housing policies 

 is less and less affordable

ilable.

al law now permits owners 

 subsidized housing to keep 

disabilities out by renting 

rly people. A recent report 
Housing

PCMR Report 

entitled Priced Out in 1998: The

Housing Crisis for People with

Disabilities published by the 

Consortium for Citizens with

Disabilities Housing Task Force and

the Technical Assistance

Collaborative, Inc. (1999)

underscored the concern about recent

federal policies, stating that "during

the last decade, federal housing

policies have been driven by a desire

to exclude, rather than include,

people with disabilities, and have

reinforced the stigma and housing

discrimination experienced by people

with disabilities every day." An 

estimated 1 million or more people

with disabilities are on waiting lists 

for subsidized housing (where the

federal government pays part of their

rent) and many of them wait for

years. It is doubtful that people with

mild cognitive impairments are even 

included in this number since they 

would have to identify themselves as 

having a disability and most will go

to great lengths to avoid such a label.

It is clear that in order for any

true changes to take place in where

and how people with mild cognitive 

limitations live, there must be much

more safe, accessible and affordable

housing and people must be able to

earn enough money to pay for their

housing needs. 

Resources 

Edgar, Elizabeth, O'Hara, Ann, 

Smith, Brian, and Zovistoski, 

Andrew. (1999). Priced Out in 

1998: The Housing Crisis for 

People with Disabilities. Boston: Technical Assistance Collaborative, Inc. and Washington, DC: Consortium for Citizens with Disabilities Housing 

Task Force. 

Galbraith, Suellen. (1999). A 

Home of One's Own: What 

Housing and Social Services 

Agencies Can Do To Afford 

People the Dignity and Support 

for Personal Housing in The 

Forgotten Generation: The 

Status and Challenges of 

Adults with Mild Cognitive 

Limitations in America. To be 

published. 

36
PCMR Report

Recommendations in Housing 

Leadership 

Strong and persistent 

national leadership is 

essential to improving 

the lives of people with 

mild cognitive 

Public Awareness 

People have little access to information 

about housing options 

or resources that can 

provide help to people 

seeking low-income 

housing. 

RECOMMENDATIONS: 

Take swift and potent action to

develop progressive policies regarding housing needs and

community supports for

individuals with mild cognitive

limitations. 

Assure that the budget and all of

the initiatives are in sync. For

example, when supporting

work incentives and tax credits 

so that people can become

employed, expanding 

home/community options must

include housing resources targeted to people with disabilities 

to match the employment

initiatives, such as providing an

additional 20,000 Section 8

vouchers. 

Convene key players to discuss

the housing needs of people

with mild cognitive limitations

and advocate for more

affordable housing options. 

37

RECOMMENDATIONS: 

 Expose the travesty that people 

with disabilities—even those 

earning minimum wage—are 

living in poverty and often 

cannot afford safe or adequate 

housing. 

 Introduce information on and 

planning for housing as part of 

the high school transition 

process. 

 Simplify the reading level of 

housing information papers and 

documents. 

 Produce a yearly easy-to-read 

publication on how to access 

affordable housing and existing 

funding programs. 

 Train housing program 

personnel on the needs of people 

with mild cognitive limitations. 
Transition Planning 

Housing issues should be 

part of every student's 

public school transition 

plan. 

 Build on supports to coalitions to 

describe the needs of the various 

populations, teach citizens to access 

housing, work to influence the 

allocation of resources for safe, 

affordable housing and advocate for 

civil rights protection in housing. 

 Encourage the disability community 

to actively participate in the 

Consolidated Plan (ConPlan) that 

cities and counties receiving 

Federal housing assistance are 

required to develop and update 

annually. The ConPlan is a 

comprehensive 5 year planning 

document that describes housing 

needs, market conditions, housing 

strategies, and outlines an action 

plan for investment of federal 

housing funds. 

 Encourage service providers, 

disability groups, family, friends, 

and provider organizations to join 

low income housing coalitions at 

national, state, and local levels. 

Self-advocates should become 

active in these coalitions underscoring the theme, "Nothing 

About Us, Without Us." These 

coalitions embrace other 

populations, such as people on 

welfare, immigrants and the 

homeless, pooling resources and 

political power to become 

formidable in their influence. 

RECOMMENDATIONS: 

Identify and promote opportunities

for advocates, advocacy agencies,

Public Housing Authorities, and

local governments to work together

to solve housing problems. 

Form state and local housing 

coalitions including self-advocacy 

and disability groups, provider

organizations and others to

influence how housing money is

spent. 

Build Coalitions 

Working cooperatively 

through local and state 

coalitions to address 

poverty and housing issues can lead to powerful changes. 

RECOMMENDATIONS: 

 Conduct a national survey on

the housing needs of people

including those with disabilities. 

Research 

More information is 

needed in every aspect 

of housing and people 

with mild cognitive limitations. 

Housing 

PCMR Report

38
Housing

RECOMMENDATIONS: 

Use IDEA and school to adult life 

transition planning to build in 

supports, including housing, for life 

after school and to prepare families 

and students for change. 

Develop transition planning specifically for foster care children with 

cognitive limitations in the areas of 

community living and housing as 

this group faces particular 

challenges in transitioning to adult 

life. 

 Increase the stock of low-income 

housing. Reverse the trend that has 

taken money out of housing 

programs to help people with 

disabilities. 

 Support a home of your own 

program that significantly expands 

the potential for home ownership by 

individuals with mild cognitive 

limitations. 

 Link housing (Section 8) vouchers to 

SSI or to Home and Community 

Based Waiver Supports so when 

someone qualifies for one service, 

they qualify for all. 

39

RECOMMENDATIONS: 

 Identify and evaluate positive state 

and federal practices in supports for 

persons with mild cognitive 

limitations affected by welfare 

reform. 

 Encourage state governors to 

include work and housing initiatives 

for people with disabilities in their 

National Governors' Association 

agenda. 

 Provide State Legislators 

examples of good models of 

housing development ideas from 

other states. 

 Move beyond HUD to reach whatever federal resources can help to 

increase funding for affordable 

housing: 

 Work with corporations and

lenders to help them understand the 

needs of individuals with mild 

cognitive limitations. 

 Increase the flexibility of eligibility 

for Fannie Mae loans. 

 Increase participation of private 

loan institutions in developing loan 

products for people with 

disabilities. 

 Assure that the 20% of TANF 

dollars that can go to family 

supports is used creatively for

housing. 

Raise the minimum wage and eliminate barriers to people saving 

money, so people can work their

way out of poverty. 

PCMR Report

Federal Housing

Issues

Changes in Federal housing and related initiatives

could have a profound impact on improving the 

housing situation for 

people with cognitive 

limitations.
41
PCMR Report

Moe 

Moe is a character. At 57, he is well spoken and can read 

and write. Special education wasn't an option at the time Moe 

was in school; he dropped out before graduating. Since the age 

of 13, he has worked for a country club in his hometown. He's 

had several jobs there, but the best job is the one he has now. 

In his khaki pants and green shirt, he's a golf caddie. What to 

some teens might be just a fun summer job has become a 

lifetime career and much more for Moe. He is very good at his 

job and popular with the guests and with the other staff. 

Moe's family had some troubles while he was growing 

up, troubles that led to strained relationships among his 

siblings. Several years ago, Moe and the sister with whom he 

lived went from the Midwest all the way to Alabama to see 

another sibling. The visit didn't go very well. From there, Moe 

and his sister went to Memphis. Then, he unexpectedly found 

himself alone, stranded in a strange town with no money. He 

spent a few nights at the Salvation Army wondering what he 

would do. Ever resourceful, Moe called the president of the 

board of the country club where he worked and told him what 

had happened. 

Soon he was on a Greyhound bus back to his home, but 

the home he had with his sister was no longer an option. 

Determined to keep Moe from becoming homeless, his friends 

at work fixed up the gardener's storage area so that Moe could 

live there, just until he could get back on his feet. He returned 

to work but his work is seasonal, April through October, and 

Moe was having trouble making ends meet. His friends at 

work were also concerned because living on the property was 

not a good long-term solution. So they called around and 

finally found an agency that could provide him a space in 

Section 8 housing—he didn't fit the criteria for a group home 

for people with mental retardation. When they had a meeting 

to make a plan for Moe, his friends and coworkers were 

there—all supportive and concerned for him. 

Despite the hard times, Moe reclaimed security and 

friendship from a support network that remains broad and 

cohesive. He has made friends with some of the people in the 

Section 8 housing program. He also likes cooking his own 

meals, especially his favorite— spaghetti! Though he's happy 

with his living arrangements right now, he's planning to move 

into an apartment with a friend one of these days. 

43
PCMR Report

A friend who works for the 

parks department gives Moe a 

ride to work every day. Healthwise, he's doing pretty well right 

now. Moe's boss—the president

of the board of the country 

club—makes sure he doesn't 

overdo. He doesn't allow Moe to 

work in the rain or work too 

long in the sun. On those days, 

the president will drive Moe 

home. It's clear Moe's boss and 

coworkers want him to be 

around for a long time. Moe 

even gets to rub elbows with a 

lot of sports celebrities, like 

Michael Jordan and Mike Ditka, 

when the PGA comes to town. 

It is ironic that in the disability arena, we struggle to define 

the elusive term "inclusion" 

when all we need to do is just 

ask Moe. Though he encounters 

problems from time to time, his 

life is full and getting better

every day. 

44

Moe walks to church every Sunday where he sees some of the people he's

known from the country club. He even admits to having a pretty girlfriend who is

from a "well-to-do" family but he says he has no plans for getting married at his

age. In the winter months, Moe supplements his income by doing contract work at 

the workshop that the provider runs. Moe is very proud of who he is and of the

achievement award he recently won. 
PCMR Report

Nakita 

Nakita thanks God that spring is finally here because she 

can turn off the heat and save precious money. To increase 

income, Nakita rented out a room in her home, but that made her 

food stamps go down to only $85 a month. It's barely enough to 

buy food for her son so she gets her nourishment from "dumpster 

diving." When no one is around, Nakita gets food out of 

dumpsters behind restaurants. At least she did, until the car died. 

Living below the poverty level hurts her physically and 

mentally. Nakita wants to work and wishes that she could, though 

the challenges she faces preclude working. "I honestly don't 

know what to do," she says. Nakita quit wearing an artificial eye 

because the ointment she needs costs $9-10 a month and to clean 

it costs $25- 30. Her benefits don't cover this, so her only choice 

is a patch. 

"I'd give up anything for my son, so he can have a few 

things. I don't want him growing up and hating the USA. We are 

a proud country — so proud that the 'higher up' people turn their 

backs on us as if we don't exist." Nakita continues, "I have never 

had much self- esteem, but now I have none. I worry all the time. 

I don't want my son to see just how bad off we are. I keep my 

tears inside 'till he's tucked away in bed for the night. No child 

should have to worry if he's gonna get a meal today or not. So 

this is my goal — bring him up the best I know how and pray he 

too will have a future like other kids." 

45
PCMR Report

Community Living

Community is a place where

people live in harmony, have

meaningful and satisfying face to face

relationships, care about each other

and look out for each other (Bogdan 

and Taylor, 1999). But people can live

in the community and still be isolated,

ignored and lonely. How do we help

people with mild cognitive limitations

become part of their communities and 

build close relationships that will give 

them lifelong support? 

Most of us feel part of our

communities because we have friends

there. We feel welcome in the

churches, schools and other places.

People greet us with a smile when we

go to the store and we are known by

sight and often by name. We know 

what the rules are for how we should

dress and act and we fit in with how

the rest of the people in the neighborhood look and act. We are accepted

because we are similar to others in our

communities. 

People with mild cognitive

limitations often struggle to fit into 

their communities. They do not always

understand what the rules are for being

like everyone else and they may be just

different enough to be noticed. These

individuals may have a hard time

making friends because they are at a

particular disadvantage. Their

disability is not easily identified so

they may avoid some stigma but this

also means that people may see them

as "odd" without realizing the

differences may come from disability. 

Successful life in the community

often depends on the availability of 

supports and services. In most states,

eligibility for 

Community is a 

place where "people 

live in harmony, have 

meaningful and satisfying face to face 

relationships, care 

about each other 

and look out for each 

other." 

-- Bogdan & Taylor, 1999 

publicly funded services and supports 

is limited to individuals with more 

severe and profound disabilities and

even then there are long waiting lists. 

Reforms in these systems may not 

benefit people with mild cognitive 

disabilities (Bradley, Agosta & 

Kimmich, 1999). The mental 

retardation system has an all or nothing 

approach to support while people with 

mild disabilities usually need only a 

few services now-and then. Most 

people with mild cognitive limitations 

cannot even qualify for services unless 

they have additional disabilities and so 

they have to get help from agencies 

who serve individuals with lowincomes. 

Poverty is widespread among those 

with mild cognitive limitations. Many 

people are unemployed or employed 

only sporadically. Those who have 

such limited incomes that they receive 

S SI or other public benefits are 

typically living well below the poverty 

line. Even if people are employed, they 

are unlikely to be making more than 

minimum wage and that is often not

enough to provide 

46
PCMR Report

Community Living 

for adequate housing, preventive 

medical services, a nutritional diet, the 

needs of children, etc. Many of the 

things we do that make us a part of our

communities are beyond the reach of

people who do not have enough income 

to cover their family's needs. 

Individuals with mild cognitive 

limitations may not want to admit they 

need supports because they don't want 

to admit they have a disability (Bradley, 

Agosta & Kimmich, 1999). This leaves 

many of them outside the disability 

system and dependent on welfare 

programs like food stamps, housing 

subsidies and Temporary Assistance to 

Needy Families (TANF). With recent

welfare reform, however, these services 

have lifetime limits and once the 

maximum is reached people cannot 

qualify again. 

Resources for people with low-incomes are designed to help with basic 

needs like food and housing. People 

with mild cognitive limitations often 

fail to get the help they need because 

they do not know these resources are 

available or how to gain access to them. 

There is no consistent system to help 

people find out about services. In 

addition, these services do not focus on 

including people in the community 

(Bradley, Agosta & Kimmich, 1999). 

to live on but is enough to make the 

person ineligible for other assistance 

(like food stamps, health care and 

subsidized housing). 

TANF in some states may 

exempt people with disabilities from 

work requirements but it also excludes 

them from training and other programs 

that might be beneficial. It does not, 

however, exempt them from the time 

limits on benefits. As a result, they run 

out of benefits and lose TANF 

eligibility without having a job to 

replace the income unless the state 

chooses to continue assistance at the 

state's expense. People with mild 

cognitive limitations currently on 

TANF will be hard hit by the loss of 

these programs when the time limit is 

up. 

With the current anti-welfare 

mentality, people with mild cognitive 

limitaPeople on TANF are required to 

go to work as quickly as possible. Unfortunately, in most states, TANF does 

not make exceptions for people who 

cannot learn work skills in the time 

allowed or have chronic problems that 

prevent them from learning or working. 

It does nothing to address the problems 

of those who leave TANF only to take 

minimum wage jobs that do not provide 

enough money 

47
PCMR Report

Community Living 

tions who do get services are the most

likely to be dropped by governmental

agencies that want stricter rules for

who can qualify (Bogdan & Taylor, 

1999). Because they often seem very

competent until you know them well,

their needs for explanation, advice,

encouragement and help may be

hidden (Bradley, Agosta & Kimmich, 

1999). 

larity in the 70s. This program 

recruited volunteers —members of the 

community who were connected and 

successful in dealing with the daily 

challenges life brings. These volunteers 

were trained and matched with 

individuals with cognitive limitations 

to provide friendship, encouragement, 

and support in daily activities and 

resolving problems. Through Citizen 

Advocacy, people with cognitive 

limitations learned to be a friend, to 

access community resources, to make 

sure a child got the right dose of

medicine, to communicate needs and to 

pursue desires. Despite the incredible 

success that many of these programs 

had in building relationships that 

continued long after the programs 

ceased, most fell as casualties of the 

drastic slash in federal funds to support 

human welfare services that marked 

subsequent decades. 

One significant problem people

with mild cognitive limitations face is 

isolation. They need to be connected

with other people and to learn to speak

for themselves. Self-advocacy groups 

are gaining in momentum, numbers

and strength. They have proven to be

powerful avenues that enable people

with cognitive limitations to gain selfconfidence, learn information about

rights and resources, get information to

make responsible choices and find the

power to take control of their lives.

Many people have become empowered

to dramatically change their lives for

the better with the training and support

that comes from participation in selfadvocacy groups and selfdetermination training. 

Most people don't know individuals with mild cognitive limitations even 

exist, so little attention has been paid to 

helping them become part of their 

communities. Our attention has been so 

focused on individuals with more 

substantial cognitive and other

developmental disabilities that we 

know very little of this group of

individuals whose needs are less 

obvious. We do not even know how 

many people have mild cognitive 

limitations. We know some of the 

challenges they face but need to 

identify all of the existing issues and 

find real solutions. Until we do, people 

will continue to lead lives of poverty, 

illness, loneliness, homelessness and 

fear—lives that fall short of the quality 

lives they so richly deserve. When we 

find ways to make communities places 

that welcome, value and support

people with mild cognitive limitations, 

we will make communities better for

all of us. 

While there are growing

numbers of self-advocacy groups 

across the country, they are not present

in every community and the 

knowledge, resources and support they

provide vary widely from group to

group. Again, one barrier for people

with mild cognitive limitations is that

being part of a self-advocacy group 

means admitting you have a

disability— something many people

with mild disabilities are reluctant to 

do. 

One of the most successful programs in helping people become connected to their communities was

Citizen Advocacy, a concept that

gained popu48
PCMR Report

Community Living 

Resources 

Bogdan, Robert and Taylor, Stephen J. (1999). Building Stronger 

Communities for All: Thoughts About Community Participation for People with Developmental Disabilities in The Forgotten Generation: The Status and Challenges of Adults 

with Mild Cognitive Limitations in America. To be published. 

Bradley, Valerie J., Agosta, John M. & Kimmich, Madeliene. 

(1999). Social and Community Participation: How to Enhance 

Supports to People with Mild Cognitive Disabilities in The 

Forgotten Generation: The Status and Challenges of 

Adults with Mild Cognitive Limitations in America. To be 

published. 

49
PCMR Report

Recommendations in 

Community living 

Public Awareness Further Research 

and Education As long as the tragedy 

of the Forgotten Generation remains hidden, 

people with mild cognitive limitations will 

continue to lead lives of 

poverty, illness, loneliness, homelessness 

and fear without help 

and without hope. 

More information and 

more education are 

needed on every aspect 

that impacts on this 

population. Only then 

can we understand all 

of the existing issues 

and develop meaningful 

solutions. 

RECOMMENDATIONS: RECOMMENDATIONS: 

Make the public and policymakers 

aware of the fact that people with

mild cognitive limitations exist and 

need ongoing supports to achieve 

healthy, full, contributing lives. 

 Educate private foundations about

people with mild cognitive limitations,

their needs that are not being met by

federal and state resources, and how

they can help. 

Mount a publicity campaign to increase acceptance of people with 

disabilities across the country by promoting accomplishments of individuals with disabilities. This campaign 

should encourage community inclusion and include examples of people 

being included in housing, being good 

neighbors, contributing to their communities, embracing diversity, etc. 

 Promote research to identify more 

precisely the Forgotten Generation. 

There are many questions: How many

people fall into this population? Why

do people have the challenges they

have? How many live in poverty? 

What is the true economic impact? 

What strategies could improve the 

situation? Perhaps the most important question of all is: How can we

encourage and support generic 

community services to reach out

to meet the needs of all people, 

including those with mild cognitive limitations? 

Reach out to the public for input on 

these recommendations to the President. Ask that they be adapted into 

public policy at every opportunity. 

50
PCMR Report

Community Living 

 Present the findings from this research widely. Teach present and

future professionals, educators,

generic service providers and

others about this population and

the strategies that can alleviate

the challenges that are faced. 

Poverty 

Poverty is widespread 

among people with 

mild cognitive limitations and affects every 

area of their lives — 

having enough food to 

eat, getting appropriate health care, providing an education for 

their children, and finding adequate housing. 

 Assure that research conducted is

designed with the input of

individuals with mild cognitive

limitations so that the strategies 

employed respect informed

choice and personal dignity. 

 Work with Health and Human

Services to develop data on the

TANF program and its activities

in regard to people with mild

cognitive limitations. Publicize 

the resulting information to all 

resources that can impact on 

public policy and enhance the

lives of individuals with mild

cognitive limitations. 

RECOMMENDATIONS: 

 Increase awareness within the 

Federal government and 

Administration about the millions 

of people with disabilities who live 

in poverty and who should have 

access to federal programs. 

 Encourage the Administration on

Children and Families to invest

in a survey to determine the

specific outcomes for recipients 

of public benefits with mild 

cognitive limitations. 

 Expand membership of coalitions 

looking at poverty at the 

community and state levels to 

include self-advocates, family 

 Study the effects of federal an members, friends and providers. d

state higher graduation standards

on youth with mild cognitive  Promote joint initiatives between 

developmental disabilities, 

vocational rehabilitation, education 

and social services around welfare 

to work. 

 Establish cooperative 

demonstrations to work in waiver 

authority under Section 1115 of 

the Social Security Act. 

51
PCMR Report

Community Living 

 Add the infrastructure development to

establish independence accounts

through a funded Home and Community Based Waiver service. 

be strong self-advocates should start 

in elementary school. 

 Develop coalitions to build stronger 

self-advocacy networks on a local, 

state and national level. The Illinois 

Self-Help Center, designed to 

strengthen linkages and develop mutual support strategies, serves as a 

good model for these coalitions. 

 Raise the minimum wage to a livable

wage and eliminate barriers to people

saving money, so people can work

their way out of poverty. 

 Work with Administration of Children

and Families to identify and encourage exempt uses of welfare reform

funding for people with mild cognitive

limitations. 

 Expand support for helping people to 

learn to be strong self-advocates, 

starting in elementary school. 

 Simplify the reading level of applications, information papers and legal 

documents. 

Enhancing 

 Mandate that all disability and generic

services funded through federal resources require the active involvement 

of individuals in the development, design and evaluation of the supports and 

services they receive. Assure that selfadvocacy training is available so that 

people with mild cognitive limitations 

are able to effectively participate in 

driving the supports and services they 

receive. 

Self-Advocacy 

Self-advocacy groups 

have proven to be 

powerful supports that 

enable people with 

cognitive limitations to 

gain self-confidence, 

learn information about 

rights and resources, get 

support to make 

responsible choices and 

find the power to tale 

control of their lives. 

 Encourage and support self-advocates in joining various advisory committees, coalitions, Boards and other 

community groups. 

RECOMMENDATIONS: 

Create opportunities in local schools 

for students to learn about self-determination and making informed choices. 

Supports for helping people learn to 

52
PCMR Report

Community Living 

people do not already have a circle 

of people who can support them, the 

broker helps to create one. These 

circles work with the individual to 

help them lead the lives they want to 

lead. As the circles of support begin 

to work well, members begin to take 

on roles that the broker played and

the broker moves into the 

background, but is still available for 

assistance. 

Community Supports 

And Service Brokerage

People often fail to get

the help that they need

because generic community service, systems do

not understand the needs

of people with mild cognitive limitations. They

do not know that resources are available or

how to gain access to

them. 

 Assure that service brokers are well 

trained in federal, state and local 

programs and resources, those 

designed for people with disabilities 

as well as those for the general 

population. People should be able to 

meet with a service broker at least 

once a year to learn about changes 

in Federal and State programs. 

RECOMMENDATIONS:

 Provide vouchers so that people 

with disabilities can hire service 

brokers who are uniformly trained. 

With a voucher, people can contract 

with any broker they choose. They 

also have the option to leave one 

broker and contract with another if

they are not happy with the services 

they receive. Having control of

funds, more than any other factor, 

puts people truly in the "driver's 

seat" when it comes to designing 

their own futures and the kinds of

services and supports they need to 

reach their dreams. 

 Establish information and service

brokerage supports that are available

to all individuals regardless of their

disability. Service brokers are

independent contractors who are

hired by the individual. Brokers

generally assist people with

disabilities and their families to plan 

for the future, get information and

identify resources and find service

providers and sources for informal 

supports. They arrange for services, 

evaluate services and supports, and

review the arrangements as needed to

address the individuals' changing

needs and life circumstances 

(Bradley, Agosta & Kimmich, 

1999). 

 Offer generic supports that are 

readily available that are not tied to 

organizations associated with

disability groups so that people who 

do not wish to be labeled as 

disabled can get the supports they 

need without the accompanying 

stigma. 

Brokers can help people to find suitable housing, find a job or make social connections. They work to expand 

the natural supports that people 

already have in family and friends. If

53
PCMR Report

Community Living 

Work toward more need-based rather 

than category-based services for everyone. Present services are based 

on categories of people with 

disabilities that are tied to particular 

funding streams. Need-based 

services would address specific 

problem areas for all people with 

needs, regardless of whether they 

have mild cognitive limitations or 

not. 

Care Finance Authority, the Department of Education, Housing and Urban Development, the Social 

Security Administration and

Rehabilitation Services 

Administration should work together to develop coordinated

policies and benefits. 

 Increase the 

availability of supports for

individuals in community living, 

including personal assistance: a 

broad resource that can offer

assistance in areas such as personal 

care, mobility, household affairs, 

transportation, community 

participation, communication and

more. These supports can be secured 

through flexible cash subsidies such 

as family and individual support

programs. 

Assure the money follows the person. 

Currently the disability service 

system is based on a system of 

funding that reimburses providers 

for providing specific kinds of 

services. When a person leaves a 

program, the funding for services 

stays with that provider. The person 

may or may not be able to find 

alternative services that meet continuing needs. If the services are 

found, adequate funding may not be 

available to extend the supports to 

the individual. If the funds followed 

the individual instead, it would 

enable the person to purchase 

services that are consistent yet no 

more nor less than are truly needed 

to address individual needs. 

 Invest more 

federal funding to address access to 

public transportation. A reliable 

source of transportation is critically 

important to community inclusion, 

securing needed supports, economic 

self-sufficiency, full citizenship, 

self- determination and choice. 

 Promote and

secure universal health insurance to 

assure that people with mild 

cognitive limitations have full access to preventive and prescriptive 

health care. 

End waiting lists. Fully fund and/or 

improve equity in programs for 

people with disabilities so that those 

with mild disabilities are able to 

secure the supports that they need to 

become more independent and 

included in their communities. 

Establish stronger public/private partnerships between local government 

and private service providers. 

Foster interagency coordination for 

school-to-work transition. The 

Health 

54
PCMR Report

Community Living 

RECOMMENDATIONS: 

 Commission the development of a 

best practice guide on how to support people with mild cognitive 

limitations in the community and 

widely promote this guide. 

 Sponsor a national conference on 

building community support 

structures for individuals with mild 

cognitive limitations. Foster 

communication among states to 

share model program ideas. 

with mild cognitive limitations to increase their competence and foster Build Community inclusion. 

 Create more opportunities for 

individuals with disabilities to 

participate in established 

neighborhood activities, recreation, 

and groups dealing with community 

issues. 

People with mild cognitive limitations often 

have great difficulty 

making connections in 

their communities and 

in identifying those who 

might provide friendship 

and support. They need 

assistance to help build 

networks of support and 

acceptance. 

 Empower circles of friends in 

becoming advocates and assure that 

needed supports are found and 

maintained. A service broker is an 

excellent point person to develop a 

plan of action and facilitate this 

empowerment. 

 Fund "citizen advocacy" style natural 

supports in which a person who is already living a successful, inclusive 

lifestyle in the community befriends 

an individual with disabilities to 

facilitate making community 

connections, identifying and using 

resources, fostering relationships and 

providing support and 

encouragement. 

 Involve friends and family in 

planning for the housing, life-style 

preferences, needed supports, etc. of 

children and youth with mild 

cognitive impairments. 

 Increase programs of mentoring 

younger students with disabilities in 

the schools. This can lead to building 

greater "circles of friends" in 

community so students with 

disabilities can lead inclusive lives as 

valued citizens as adults. 

 Use the local media to match needs 

to available supports in community 

programs. 

 Encourage community groups and 

associations to reach out to enroll 

people with mild cognitive 

limitations as members. 

 Work with faith communities to 

build interest in providing supports 

to people 

55
57
PCMR Report

Barry 

At 9:11 p.m. on August 31, 1995, Barry's life was over. Small 

of stature but long on courage and the outrage of injustice, his 

mother had lost the battle to save her son's life. Barry's voice has 

been forever silenced, but his story—complicated and convoluted—

will not die. He was a member of the Forgotten Generation whom 

we must not forget. 

The saga began in early 1983 when a young Air Force nurse 

was kidnapped, raped and murdered. The issue was black and 

white—she was white and the two men the police sought were 

African American. So was Barry and that was an important issue 

deep in the heart of the South. Deputies arrested him within a few 

weeks of the murder and soon secured not one, but two confessions. 

His court appointed attorney never surfaced the issue of Barry's mild 

cognitive limitations as a mitigating factor in his first trial. Barry 

was quickly convicted and sentenced to death. 

His conviction was not for the kidnapping, rape or murder, for 

there was no hard evidence that tied him directly to any of these 

crimes: semen and hair found at the scene were not his. Barry was 

convicted of being an accomplice, reportedly "confessing" that he 

was sitting in a car outside of the old farmhouse when the murder 

occurred. He never confessed to killing the nurse or knowing the 

murder would occur. 

Barry later recanted the confessions, saying that he was coerced 

into making them. Five other suspects testified that they too had 

been cruelly beaten (two threatened with guns to their heads!) in 

unsuccessful attempts to make them confess to the same came. 

Barry's head was bandaged during his videotaped confessions from 

the injuries that he sustained. Reportedly, the videotape also shows 

him frequently glancing away from the camera—apparently being 

coached as he gave his confessions. Barry later told one of the 

psychological examiners that he was looking at the Sheriff during 

the confession. Barry reportedly said that the Sheriff was pointing to 

Magic Marker colors drawn on cardboard and this was how Barry 

knew he was supposed to answer "blue" when asked what color of 

car he was driving the night of the murder. The Sheriff (who went 

on to serve in a high elected office) denied all charges of abuse and 

coercion. Barry's confession provided the ONLY significant 

evidence the State had against him, but that was enough to seal his 

fate. 

After a decade of appeals, hope resurfaced. A U.S. District 

Judge commuted Barry's death sentence to life in prison without 

l j h b f hi h d l d i S b 22 59
PCMR Report

This bright prospect was eclipsed when the Appellate Court overturned the 

decision and mandated the reinstatement of the death sentence. 

Understanding Barry's cognitive limitations, advocates were 

soon encouraged with the passage 

of a state law precluding the use 

of the death penalty on people 

with mental retardation. 

Arguments as to whether or not 

Barry had mental retardation 

ensued. While Barry was illiterate 

and had a history of trouble with 

school, his records held no stated 

diagnosis of mental retardation. 

Street wise, Barry was eager to 

hide anything that would make 

others see him as weak—the 

epitome of a young man from the 

Forgotten Generation. 

Several examiners evaluated Barry; only one claimed that Barry was not 

mentally retarded. This examiner reportedly based her conclusion (an IQ of 87) 

on the results of a picture test used for World War I draftees who could not read 

or write English. News reports stated that various tests placed Barry's IQ at 60, 

63, 65 and 87. In a published letter to the editor of the major local newspaper, 

one of the expert witnesses evaluating Barry said that the accused had signed a 

written confession that he could not even read because he was illiterate. Despite 

arguments from experts on mental retardation, the judge deemed the issue 

controversial and would not rule that Barry had mental retardation. The judge 

then determined that the law that might have saved Barry's life wasn't applicable 

in his case; yet another judge ruled he was not entitled to a jury determination on 

this issue of whether he was mentally retarded. 

In a letter to the Governor pleading for clemency for Barry, a member of the 

state parole board that considered clemency for Barry, reportedly noted that the 

board had never been so clearly divided on an issue or come so close to recommending clemency. She did not believe Barry could have been responsible for the 

murder and pleaded with the Governor to have mercy. It was Barry's last hope. 

Arguments continued until the final hour but the flickering flame of hope 

soon died. After 12 long years on death row, after the endless days during which 

Barry's mother lived in fear and the endless nights during which Barry did not 

know if he would live or die, the Governor denied clemency and signed his final 

death warrant. In the early darkness of August 31, 1995, the touch of a toxic 

needle brought an end to Barry's life. Yet, his story lives on as a prime example 

of the abject vulnerability of people with mild cognitive limitations caught in 

systems that do not recognize or respond to their plight. 

60
PCMR Report

Trevor

In his 30's, Trevor lives with his mom and dad. He has his

own car and drives everywhere. For several years, he did odd

jobs for a non-profit organization that often held evening 

meetings. 

One evening, there was a group of 13-15 year olds meeting 

in the building. Trevor was told not to allow them to go down

the hallway outside the meeting room. Three of the girls tried to

go down the hall; Trevor told them it was off limits. They made

fun of him and called him a "retard" because of his speech 

problem. They tried to push past him anyway. A shoving match

resulted and the 3 girls and their parents filed "sexual assault"

charges against Trevor, claiming that he grabbed their breasts

and buttocks

Trevor's explanation was 

that he tried to spank the "children" because they wouldn't 

mind him. He denied touching 

their breasts. A judge found 

him guilty but before he was 

sentenced, Trevor's mom 

contacted a non-profit 

disability advocate and asked 

for help. Not confined by strict 

governmental definitions of 

mental retardation, they took 

— his case and convinced the 

judge to put Trevor on 

probation. He was sentenced 

to 1,000 hours of community 

service at the advocacy 

organization and the judge 

directed them to provide him 

sex education training (with a 

lot of emphasis on appropriate 

touching). Trevor completed 

his hours and has been doing

for the past four years. Had he not had a strong and knowledgeable

advocate, Trevor would have turned out very differently: he would

surely have been lost in the horrific, tragic and unrelenting world

of a prison! 

61
PCMR Report

Criminal Justice 

The criminal justice system is complicated. Few of us understand how it

works and find even minor things like

reporting a petty crime to be a little overwhelming. People with mild cognitive

limitations already have a hard time understanding everyday issues. If they become involved as a victim, witness, or

are accused of a crime, it is almost certain

that they will not understand the complicated

rules of the criminal justice system. They

are more likely to be ignored, falsely

accused and convicted, and to have their

rights violated. 

with cognitive limitations are often 

disregarded in the present criminal 

justice system (Luckasson, 1999). 

People with mild cognitive 

limitations have the same rights as 

other citizens, including the right to 

legal representation, a speedy trial, to 

assist in their own defense, and to 

have their disability appropriately 

evaluated and acknowledged for any 

legal significance it may have. 

With only a few rare 

exceptions, policemen, lawyers, 

corrections officials, probation 

officers, victims' assistance programs, 

and judges have little understanding of

the challenges and needs of people 

with cognitive limitations. The system 

is not prepared to deal with individuals 

with mild cognitive limitations as 

perpetrators, witnesses or victims. Often, these professionals are also 

unaware of the resources that exist

with expertise to help develop 

successful intervention strategies for

this population. 

If being a citizen has 

genuine meaning, it must 

include an expectation of 

fair treatment from the 

criminal justice system. 

Yet the principles of justice, fairness, and safety 

are distorted in the presence of mild cognitive disabilities. Defendants 

with cognitive limitations 

are often not treated well, 

and crime victims with 

cognitive limitations are 

often disregarded in the 

present criminal justice 

system 

The job of the police is to determine if there was a crime and find the 

person who did it. The police believe 

that it is the court's job to decide if

someone has mild cognitive 

limitations and whether that had any 

affect on their involvement in the 

crime. They do not feel it is their job 

to determine whether a person 

understands the charges against them 

or what it means to confess (PCMR, 

1991). Because of that, the cognitive 

limitations of a person accused of a 

crime are rarely discovered during 

police questioning. Unless someone 

who cares about the person pushes for

testing, the question of whether a 

person is competent to 

— Ruth Luckasson, J.D. 

If being a citizen has genuine

meaning, it must include an

expectation of fair treatment from the

criminal justice system. Yet the 

principles of justice, fairness, and

safety are distorted in the presence of

mild cognitive disabilities. Defendants 

with cognitive limitations are often not

treated well, and crime victims 

62
PCMR Report

Criminal Justice

confess or stand trial may not come up at 

all. are in a highly emotional state that affects

the results. If they are tested again after

they have adjusted, their test scores are

generally higher. Using different tests and

different examiners also changes how

many people are identified. While it is 

widely believed that the number ofpeople

with mild cognitive limitations in the criminal justice system is considerably larger

than the number with mental retardation, 

there is no accurate count (PCMR, 

1991). 

Competency means the person has

the ability to understand what is happening. In the criminal justice system competency also means the ability to assist in

your own defense. Deciding if a person

with mild cognitive limitations is competent can be complicated and difficult because they don't want to admit when they

don't understand things They may say

what they think the other person wants

to hear. The individual may also have

mental health issues. These complications are particularly dangerous when the

other person is a police officer trying to

get a confession to a crime. 

Mental retardation does not cause 

a person to be a criminal. People with

mild cognitive limitations get involved in

crime for the same reasons as other 

people. They often have a rough childhood with little discipline and are not

taught moral values. Broken, dysfunctional families and poor support and encouragement from their family or community are typical. People with mild cognitive limitations do poorly in school, have

low self-esteem, have difficulty finding

and keeping jobs, and seldom succeed. 

They fall into the wrong crowd and make

errors in judgment. These individuals are

follower who are easily manipulated and

used by others with more intelligence or

experience. They are used as lookouts, 

to carry drugs or forged checks, and to 

carry or sell stolen goods (PCMR, 1991).

People are also more competent

in some situations than they are in others

depending on the circumstances, the information and training provided and even

the people involved in the situation. For

instance, a person with mild cognitive limitations who is innocent may confess to a

murder because he is afraid of being hurt,

he wants to please the police, or because

he believes that if he does confess, he

can go home. Because he does not understand what will happen if he confesses,

he is not competent. If things are calmer,

people take the time to carefully and simply explain issues, and questioners use

various checks to assure the individual

understands what is happening, the person may be competent. 

Once in the criminal justice system

there is a delay in identifying people with

cognitive limitations, if it is done at all. 

There is limited understanding of disability and limited resources for testing. Mild

cognitive limitations are not apparent, 

people do not want to be identified with

the disability and will try to hide it, there

are technical problems in diagnosing it, 

and most forensic examiners only know

about mental illness (PCMR, 1991).

In 1991, PCMR estimated that

approximately two percent (2%) of those

in the criminal justice system have mental

retardation, about 26,500 prisoners

across the country. The rates are probably overstated because the tests are

given just after people are brought in and 

63
PCMR Report

Criminal Justice 

Since the criminal justice system is 

not set up to meet the needs of individuals with mild cognitive limitations, there 

should be alternative solutions. The most 

effective approach has been to keep 

people away from sentencing and jail 

and give them supports and programs 

designed for people with mild cognitive 

limitations. Transdisciplinary demonstration, evaluation, and research projects 

should be initiated that create techniques, 

instruments, and standards to be used in 

the forensic evaluation of juvenile and 

adult defendants with mild cognitive 

limitations in the areas of competence to 

stand trial, competence to confess, competence to waive the right to an attorney, 

and, for victims, competence to testify or 

be a witness (Luckasson, 1999). 

Resources 

Luckasson, Ruth, J.D. (1999). 

The Criminal Justice System 

and People with Mild 

Cognitive Limitations in The 

Forgotten Generation: The 

Status of Adults with Mild 

Cognitive Limitations in 

America. To be published. 

President's Committee on Mental 

Retardation. (1991). Citizens 

with Mental Retardation and the 

Criminal Justice System. Washington: U. S. Department of 

Health and Human Services. 

Resources for 

Barry's Story 

Just as their disability causes them to 

be left out of the protections for people 

accused of crimes, people with cognitive 

limitations are rarely seen on juries or as 

witnesses in courtrooms. The legal 

system assumes that challenges in 

communication, understanding and 

memory prevent people from being seen 

as believable. Yet these individuals not 

only have the right to be involved in the 

legal system, with support they can also 

be powerful witnesses and jurors. 

Brummett, John. (1995). The 

Fairchild issues won't die. Arkansas Democrat-Gazette. August 29. 

Chaney, James A., Ph.D. (1993). 

Save a sparrow from death. 

Letter to the editor. Arkansas 

Democrat-Gazette. September 

19. 

Perske, Robert. (1991). Getting 

Barry Fairchild's confession 

was easiest. Unequal Justice? 

What can happen when persons 

with mental retardation or other 

developmental disabilities 

encounter the criminal justice 

system. Nashville: Abingdon 

Press. 

People with mild cognitive 

limitations are easy targets for crime. 

They do not always understand when 

someone else is taking advantage of 

them and so are more likely to be 

manipulated, and exploited or be the 

victims of violence. Yet even if they 

report a crime, it is not unusual for the 

police to fail to pursue it because they 

don't find the person believable. The 

criminal justice system's limited 

understanding of this population keeps it 

from recognizing, interviewing, 

protecting and supporting people with 

mild cognitive limitations who are victims of crime. 

Pierce, Ray. (1993). Board 

rejects pardon for Fairchild. 

Arkansas Democrat-Gazette 

Pine Bluff Bureau, 

September 18. 

64

Pierce, Ray. (1995). Give 

Fairchild clemency. Arkansas 

Democrat- Gazette Pine Bluff 

Bureau, August 26. 
PCMR Report

Recommendations in 

Criminal Justice 

conferences, publications and techA Little Known nical assistance. 

Problem 

Explore a variety of ways to intervene early, before people with cognitive limitations enter into the criminal justice system. For instance, 

training people about situations that 

might lead to arrest, such as inappropriate touching, public vs. private 

sexual behavior and taking things 

when you do not have money can 

help to avert these behaviors and 

prevent trouble from occurring in the 

first place. Education about one's. 

rights when arrested might help 

someone to ask for an attorney before questioning and prevent a confession to crimes that were not committed. 

There is little awareness of the issues that 

confront people with 

mild cognitive limitations when they encounter the criminal justice 

system. 

RECOMMENDATIONS: 

Convene a Summit on criminal justice issues. Invite key national, state 

and local players in the criminal justice system, such as the Department 

of Justice and the International Association of Chiefs of Police, and 

other national organizations of professionals in the criminal justice system. This Summit should be designed to educate about the many 

pitfalls the criminal justice system 

holds for individuals with mild cognitive limitations. 

An Unprepared

Criminal Justice 

System 

The criminal justice system is not prepared to

deal with individuals

with mild cognitive

Involve key advocacy, self-advocacy and criminal justice groups to

work to place and keep this issue

on a persistent national agenda for

change. 

limitations as perpetrators, as witnesses or as

victims. 

Encourage local and state advocacy RECOMMENDATIONS: 

and self-advocacy groups to pursue

activities that can lead to systems

change on the local level. Support

this effort by providing workshops, 

 Fund the development of training 

modules for professionals in every 

aspect of the criminal justice system. 

65
PCMR Report

Criminal Justice 

The modules should provide information about people with mild

cognitive limitations as victims, as

witnesses and as offenders and

include issues such as recognition,

communication, management,

alternative sentencing, protection

of rights, and support for people as 

victims and witnesses. 

 Mandate the use of these modules

or comparable training as part of

initial and ongoing educational

requirements, including college

coursework, judicial conferences,

bar associations, police 

departments, etc. 

should promote alternatives that 

are very flexible and highly 

individualized. Education and

training should be provided to 

individuals about their rights, how 

they can get formal and informal 

supports in the community and

other issues pertinent to their

situation. 

 Insure that state juvenile and adult 

criminal law includes diversion 

programs for people with mild 

cognitive limitation that can be 

accessed by judges, probation 

officials and law enforcement 

personnel. Such diversion 

programs could include service 

brokerage and the use of flexible 

funds to pay for those supports 

necessary to keep individuals out

of the criminal justice system. 

 Encourage the criminal justice system to work with other agencies to

effectively deal with the source of

problems to keep people out of

that system. 

 Create a system of courtappointed special advocates for

individuals with mild cognitive 

limitations similar to those for

abused children (CASA). This 

would assure that the individual

understands rights, is aware of

supports available, those involved 

are educated regarding the issues 

and assures that rights are 

protected. 

Alternative 

Dispositions

People with mild 

cognitive limitations 

benefit greatly from 

the design and 

implementation of 

alternatives to 

incarceration. 

RECOMMENDATIONS: 

 Design a model system for

developing alternative dispositions

for people with mild cognitive 

limitations in the criminal justice

system. This model 

66
PCMR Report

Criminal Justice 

 Research protocols to enable individuals with mild cognitive 

limitations to give truly informed 

consent. Assure that research 

designs are sensitive to individual 

privacy and dignity and to 

cultural issues. 

The . Magnitude of 

the Problem 

We have no clear information about how 

many people with mild 

cognitive limitations 

are involved in the 

criminal justice system. 

Victims' Assistance

People with mild cogni

RECOMMENDATIONS: 

 Encourage the Department of Justice to conduct a survey of

criminal justice facilities around

the country to identify people with 

mild cognitive limitations, 

including those from culturally 

diverse backgrounds. 

tive limitations are 

easy targets for crime. 

The system's limited 

understanding of this 

population impedes its

ability to provide appropriate supports to these

individuals when they

become victims. 

Competency 

to Stand Trial

RECOMMENDATIONS: 

 Provide training and technical 

assistance for professionals in the 

criminal justice system when they 

encounter individuals with mild 

cognitive limitations as victims. 

Present competency 

standards address 

those with mental illness, not those with 

mild cognitive limitations. 

 Include individuals with mild 

cognitive limitations in counseling 

and classes designed to address 

victims' needs. 

 Support people when they are assaulted or abused by caregivers. 

Such cases should be reported and

prosecuted. 

RECOMMENDATIONS:

 Propose models to determine 

competency in individuals with 

mild cognitive limitations in 

criminal justice standards. 

67
Criminal Justice 

Assure that people with mild

cognitive limitations who are

victimized are able to utilize

restraining orders, as other citizens

do. 

 Provide training for educators, 

counselors and others to prepare 

them to provide training to their

students and to identify potential 

danger signs that might lead to 

problems with the criminal justice 

system. Address issues about

people from culturally diverse 

backgrounds who have mild 

cognitive limitations in this 

training. 

Awareness of Rights

and Resources

Individuals with mild 

cognitive limitations 

typically do not know

about their rights in 

the criminal justice 

system, how to protect themselves 

against crimes and 

how to recover from 

Participation as

Citizens 

People with cognitive 

limitations are rarely 

involved on juries or as 

witnesses in courtrooms. 

these traumas.

RECOMMENDATIONS: RECOMMENDATIONS: 

 Educate the criminal justice 

system regarding the abilities of

individuals with mild cognitive 

limitations as well as their rights 

under the Americans with 

Disabilities Act to participate as 

full citizens. Include in this 

training how accommodations, 

including the use of technology, 

can enhance participation of these 

citizens and others with disabilities 

as witnesses and jurors. 

 Develop a training package for 

youth and adults with mild 

cognitive limitations that focuses 

on criminal justice system issues, 

such as: civil rights within the 

criminal justice system, how to 

reduce the chances of being a 

victim of crime, what kinds of 

supports there are in the 

community to help if you are 

arrested or become a victim of a 

crime, etc. Harassment and hate 

crimes should be included in the 

issues addressed by the training. 

Make this training available in 

local schools and community 

colleges. 

 Assure that current prevention 

programs on drugs and early 

parenting are available to students 

with mild cognitive limitations.

68
Citizenship &

Civil Rights

69
PCMR Report

Carrie Ann

Carrie Ann qualified for special education services in school but 

was turned down for adult services because her IQ, ranging up to 75 on 

tests, was too high. 

When she was in her 20's, Carrie Ann's mother kicked her out of 

the house. With no job, no work skills and no home, Carrie Ann began 

sleeping under a bridge with other homeless people. She traded sex for 

food and was soon pregnant. 

Her hometown, a prim southern city, was in the middle of an avid 

campaign to get the homeless people off the street. With an atmosphere 

of strong disapproval of Carrie Ann's life-style, a conservative judge 

committed her to the state institution. Immediately efforts began to terminate Carrie Ann's parental rights to the unborn baby. This was based 

on the assumption that she would be a bad mother and the fact that the 

baby could not stay in the institution with her. A lawyer appointed to 

Carrie Ann managed to intervene and convinced her to voluntarily sign 

the baby over to her mother. By doing it voluntarily, Carrie Ann could 

later reclaim the baby. 

Eventually the lawyer got Carrie Ann released from the institution 

to a group home where she learned living skills and work skills. She 

was now presumed to be eligible for disability services because she'd 

lived in an institution, despite her IQ scores. Carrie Ann did extremely 

well and by the time her son was 4 years old, Carrie Ann was sharing 

an apartment with him and her mother, working and supporting the 

entire family. 

7 1
PCMR Report

Joe 

In school, Joe was in special classes about 40% of his day. When

he got out of school, he was no longer eligible for disability services.

More importantly, he didn't want "special" help. On his own, he got his

first job at McDonalds and enjoyed working there for awhile. Life wasn't

great, though. His mom died when he was 16 and he didn't get much

support from his father. He went through some rough times and even

thought about suicide at one point. It was really hard and he wanted to

give up, but his brother and his network of friends refused to let that

happen. Joe says that if it weren't for his brother and his friends, he

might be in jail today. . . or worse. He sure wouldn't be where he is 

today without them and he wants them to know how much they mean to

him. 

Things are a lot better in Joe's life today. He lives in an apartment with three

roommates who are college kids; he found

them through a roommate service. Joe

really enjoys his new friends and they help

him out with rides from time to time. He

cooks his own meals most of the time including lasagna, his specialty. 

For exercise, Joe plays golf a couple 

of times a month and rides his bike to work 

unless it's raining, then he takes the bus. 

When Joe lost his last job, a friend helped 

him to find a great new job as an 

AmeriCorps volunteer working with a 

state self-advocacy group to help people 

with mental retardation move out of the 

institution. Joe believes strongly that everyone deserves the chance to live a free 

life in the community. He is very proud of 

what he does and of his whole life now. 

Joe keeps in close touch with his brother 

who also works as a self-advocate in another state. Recently both brothers presented a workshop together at a self-advocacy conference. Joe really enjoys 

being able to interact with his brother not 

only as family, but also as two professionals—colleagues who are helping others 

lead more successful lives. 

72
PCMR Report

Nell 

Nell is a young woman who lives alone now. Her son was

taken away from her due to the Court's belief that she was unable

to effectively care for him. Nell understands why her son was

removed and agrees that she is not able to adequately care for him

right now, but oh, she sure does love him. Nell was granted the

opportunity to visit her son frequently; he is in foster care with a

family who lives in a small town relatively close to hers. 

When she returned to Court several months later, the social

worker (who was supposed to be facilitating Nell's visitation with

her son) complained to the judge that Nell had not even bothered

to visit her son in several months. Fortunately, the judge wisely

pursued the situation more thoroughly and discovered that Nell

had indeed wanted to visit her son and had tried several times.

However, getting to the foster family's home required using

several types of transportation along a quite confusing route

requiring complicated timing. Nell had set out to visit her son

several times but she became lost each time and had to return

home. Social services had never considered that she might need

assistance to get to her destination nor offered her help. Rightfully

frustrated with the social service worker, the judge instructed her

that facilitating visitation meant helping people to resolve

whatever their transportation needs might be. He ordered social

services to make sure Nell had transportation to visit her son even

if they had to take her! 

Nell is happy to have a new chance to bond with her son and 

take him presents on his birthday while she is working hard to 

build a new life for herself. 

73
PCMR Report

Citizenship and 

Civil Rights 

People with mild cognitive limitations are full and equal citizens. They 

have the right to vote, to serve on jury 

duty, to move about the community, 

to form relationships with whomever 

they choose and more. 

Since the 1960s, the one key

promise has been that the

vulnerabilities of individuals with mild

cognitive limitations are best

addressed through generic health,

education, income maintenance,

housing and social service programs. 

The reality, however, is that too often

people with mild cognitive limitations

cannot deal with the complicated rules

for getting government aid and fall 

through the huge cracks in the nation's

generic safety net programs. Evidence 

of this fact can be found in the overrepresentation of people with mild

cognitive limitations in foster homes

for neglected and abused children,

adult board and care facilities, state

prisons and local jails, as well as 

community mental health systems

(Gettings, 1999). Clearly these are

barriers that prevent their full 

participation as citizens. 

Barriers to their civil 

rights include fear, ignorance, prejudice, architecture, transportation, 

communication, and 

even policies and procedures. These barriers 

force people with disabilities to be unnecessarily dependent on other 

people, segregated, left 

out, or treated as children. Sometimes, the 

barriers are a result of 

deep-seated hatred. 

More often, however, 

they are the result of 

thoughtlessness or indifference. 

—Robert Silverstein 

Barriers to their civil rights 

include fear, ignorance, prejudice, 

architecture, transportation, 

communication, and even policies and 

procedures. These barriers force 

people with disabilities to be unnecessarily dependent on other 

people, segregated, left out, or 

treated as children. Sometimes, the 

barriers are a result of deep-seated 

hatred. More often, however, they 

are the result of thoughtlessness or 

For many years people with 

disabilities, especially those with 

mental retardation, cognitive 

impairments and mental illness, were 

thought to be unable to exercise their 

rights or participate fully in society. But 

changes in attitudes and laws and the 

civil rights movement mean that most 

people now believe (even if they do not 

always act on these beliefs) that people 

with disabilities not only have basic 

rights but can learn to express and 

benefit from those rights (Dinerstein, 

1999). 

74
PCMR Report

Citizenship and Civil Rights

Some people with disabilities may 

need support to participate fully in community life. That support should follow 

basic principles. 

ask for help from others. But it does 

mean people with disabilities have the 

right to decide whom to include in their 

decision-making, to whom they should 

listen and with whom they should consult. The people they consult must respect their decisions (Dinerstein, 1999). 

Obviously, in order for people to make 

their own decisions, they will need information about their rights and choices and 

may need training to learn how to exercise those rights. 

 All persons, including those with disabilities, should be able to control 

their own lives and make their own 

decisions in their own way. 

 Any limits on this should be of the 

least intrusive kind. 

 Those who come into contact with 

people with disabilities, especially 

professionals and caregivers, should 

not tell people with disabilities what 

to do but should help them make 

their own choices. 

The issue of informed consent often 

comes up for people with mild cognitive 

limitations. It is not just a question of 

whether they can legally make their own 

decisions but whether the person has 

enough information to consent and 

whether they are deciding on their own. 

Discrimination can happen when the right 

of individuals to direct their own lives gets 

pushed aside because others feel they 

are not able to make their own decisions. 

Sometimes a person's rights are simply 

ignored. At other times legal steps may 

be taken to remove their ability to decide for themselves. 

 Limits on a person's rights or choices 

should change as the person becomes more capable (Dinerstein, 

1999). 

Making their own decisions doesn't mean 

that people with disabilities can't ask for 

help from others. But Guardianship has been used and 

abused in relation to people with mild 

cognitive limitations. Laws differ from one 

state to another and, at times, they are 

based on stereotypes and the convenience of others rather than the abilities 

of each person and their need for protection. There are many complicated issues related to guardianship including the 

feeling of many families that their right to 

make decisions for their children with mild 

cognitive limitations should continue after the child is an adult without legal interference. While it can be a way to protect someone who does not have the

it does mean people 

with disabilities have 

the right to decide 

whom to include in 

their decision-making, 

to whom they should 

listen and with whom 

they should consult. 

Making their own decisions doesn't 

mean that people with disabilities can't 

75
PCMR Report

Citizenship and Civil Rights 

ability to make decisions, guardianship 

is a serious step because it removes a 

person's rights permanently. 

against people with disabilities by 

programs that get Federal money. 

 The Fair Housing Act of 1968, as 

amended in 1988, protects people 

with disabilities from 

discrimination by landlords or

housing authorities. 

One of the main reasons parents 

seek guardianship of their adult children 

with cognitive limitations is sexuality. 

It is a difficult issue for parents of these 

individuals and no issue is more packed

with explosive emotions. Parents 

sometimes feel that by getting 

guardianship they can control the rights 

of their son or daughter to choose 

friends, date, marry or have a relationship. The expression of sexuality 

is a primary right of human beings. 

Unfortunately, sexuality is also an area 

that brings many people with mild 

cognitive limitations into contact with 

the law because they have not been 

given good information on the subject 

and do not understand the rules. Rather

than keeping people from having sexual 

relationships, we need to teach them 

how to develop caring relationships and

protect themselves from exploitation 

and disease. 

 Part B of the Individuals with Disabilities Education Act (IDEA) 

guarantees all children with 

disabilities a free appropriate 

public education (Silverstein, 

1999). 

There has been tremendous 

progress in defining and protecting the 

civil rights of people with disabilities 

but there is still much to be done. One 

of the greatest challenges is making 

sure that people with mild cognitive 

limitations, who are often invisible to 

us, know what their rights are so they 

can exercise them. 

As a result of the history of

discrimination against people with 

disabilities, Congress has passed or

changed laws and regulations to state 

and protect their rights. There are four

permanent civil rights laws that protect 

people with disabilities from 

discrimination. 

 The Americans with Disabilities 

Act (ADA) prohibits discrimination 

on the basis of disability in 

employment, public services 

(including transportation), public 

accommodations (like rest- rooms), 

and telecommunications. 

One of the greatest 

challenges is making 

sure that people with 

mild cognitive limitations, who are often invisible to us, know what 

their rights are so they 

can exercise them. 

 Section 504 of the Rehabilitation 

Act of 1973, prohibits 

discrimination 

76
PCMR Report

Citizenship and Civil Rights 

Resources 

Dinerstein J.D., Robert. (1999). How People with Cognitive Disabilities and their Allies Are Coming Together to Protect their Civil Rights 

in The Forgotten Generation: The Status of Adults with Mild 

Cognitive Limitations in America. To be published. 

Gettings, Robert. (1999). Renegotiating the Social Contract: Rights, 

Responsibilities and Risks for Persons with Cognitive Limitations in 

an Era of Less Government in The Forgotten Generation: The 

Status of Adults with Mild Cognitive Limitations in America. 

To be published. 

Silverstein J.D., Robert. (1999). Our Nation's Emerging Disability Policy 

in The Forgotten Generation: The Status of Adults with Mild 

Cognitive Limitations in America. To be published. 

77
Citizenship and Civil Rights 

PCMR Report 

Recommendations in 

Citizenship and Civil Rights 

Empowerment (self-determination, real choice and full 

participation in and contribution 

to the community), not 

paternalism and charity. 

Citizenship 

People with mild cognitive limitations have 

the right to participate 

fully as citizens including the right to vote, to 

serve on jury duty, to 

move about the community, to form relationships with whomever they choose and 

more. 

 Build capacity for people to participate in the community at the 

earliest ages, through mentoring 

relationships and other

empowering experiences. 

 Assure that people with mild 

cognitive limitations have access to 

general curriculum on citizenship 

in school. 

 Educate families how they can encourage active citizenship by 

participating in community 

activities as a family and serving as 

good models. 

RECOMMENDATIONS: 

 Distribute and explain the basic

statement and four core principles

in user- friendly language sensitive

to diversity of culture and language

to state, federal, local government

and other systems. Regulations,

policies and practices must reflect

the integration of the following

core principles: 

 Educate generic service systems 

about values and underlying 

realities of people with disabilities 

including focusing on community. 

Encourage these systems to 

provide services to these 

individuals. 

 Build the capacity of generic 

systems to hear and address needs 

and desires of individuals with 

mild cognitive limitations and their

families. 

Individualization (taking into 

account each person's unique

needs), not relying on labels or

generalizations. 

 Assure that the diversity of culture 

and language is respected and accommodated in content, communication, information, design, implementation and evaluation of all human service programs and community supports. 

Independence, economic selfsufficiency and productivity, not

dependence. 

Inclusion and integration, not 

exclusion, isolation or 

segregation. 

78 
PCMR Report

 Encourage advocacy groups to address issues of citizenship for 

people with disabilities, such as 

voting and participating in all 

levels of government. 

 Examine models that support selfdetermination and promote 

replication of these models 

throughout the country. 

 Educate people with mild cognitive 

limitations about the resources in

their communities that can help in 

times of need. 

 Encourage the development of a 

full range of advocacy services 

from peer support groups to skilled 

professional advocates 

knowledgeable about people with 

mild cognitive limitations.  Sponsor a follow-up to the 

Forgotten Generation Summit to 

ensure that the work continues on 

these issues. 

 Empower people with mild 

cognitive limitations to become 

competent self- advocates through 

training, involvement in selfadvocacy groups and support. This 

training should begin in school 

with opportunities to continue 

learning and supports throughout

life. 

Advocacy 

People with mild cognitive limitations need 

knowledgeable strong 

social and legal advocates. They also need 

opportunities to learn 

to be good advocates 

for themselves. 

 Assure that individuals who are 

self- advocates are able to have 

direct access to the judiciary. 

 Develop systems to help people 

get information and advice on 

everyday matters, and support that

can prevent issues from escalating 

to the legal system in many 

instances. 

RECOMMENDATIONS:  Provide training in selfdetermination for young people and 

 Assure that all people—including adults. 

those with limited incomes—have 

access to skilled counsel. 

 Encourage University Affiliated 

Programs to work with law 

schools and communicate the core 

values of individualization, 

independence, economic selfsufficiency and productivity, 

inclusion and integration, and 

empowerment to them so that they 

are "user-friendly" to individuals 

with mild cognitive limitations. 

Consent

People with mild cognitive limitations are 

generally capable of 

giving consent when 

provided with appropriate supports. 

79
PCMR Report

Citizenship and Civil Rights 

RECOMMENDATIONS: RECOMMENDATIONS:

 Educate parents, professionals 

and the public about the right of 

individuals with mild cognitive 

limitations to make choices about 

issues that affect their lives and 

ways to assist people to make 

truly informed choices. 

 Conduct a Department of Justice 

funded review and analysis of State 

guardianship laws with 

recommendations for how these 

laws might be revised. This study 

should identify alternatives to 

guardianship and how they can be 

utilized to provide necessary 

support without diminishing rights 

and privileges. 

 Provide training to people with 

mild cognitive limitations in 

regard to self- determination 

including making choices.  Encourage the reform of 

guardianship laws that do not 

recognize the ability of people with 

cognitive limitations to be 

competent, and provide full due 

process in any type of guardianship 

proceedings, including 

representation by counsel. This 

legislation should assure that the 

least restrictive option is used, 

encourage the use of accommodations (for disability and native 

language) and technology to 

enhance communication and 

understanding, and establish a strict 

process of reviewing the 

guardianship annually so that it can 

be modified as circumstances 

warrant. 

 Require consent for medical 

issues including but not limited to 

sterilization, the use of behavior 

altering medications, surgery, 

experimental treatments, sexually 

transmitted diseases, restraints, 

aversive behavior treatments, 

denial of basic health care and 

lifesaving techniques, and testing 

and referral for organ transplants. 

Requiring consent carries with it 

the companion responsibility to 

provide full information about 

these procedures, including 

advantages, disadvantages, 

possible dangers and potential 

consequences in easy to understand language.  Mandate the use of simple, easy-tounderstand language in forms and 

papers in the guardianship process. Guardianship

 Provide training on selfdetermination for people with mild 

cognitive limitations. Selfdetermination includes issues such 

as managing money, making 

informed choices and how to find 

help when you need it. 

Guardianship is a 

legal way to protect 

a person from 

making decisions 

that can hurt them. 

It has sometimes 

been used to hurt 

the people it’s 

designed to protect. 

 Provide training to individuals with 

mild cognitive limitations on issues 

related to decision-making, 

guardianships, their rights in the 

guardianship 80
PCMR Report

Citizenship and Civil Rights

process, and resources that can help

them understand complicated legal

papers and assure that their rights

are protected. 

 Provide education and training to

families of individuals with mild

cognitive limitations on issues of

autonomy, self- determination and

the dangers of overprotection. 

 Assure that parents with mild 

cognitive limitations involved in 

custody and parental rights issues 

are provided access to legal counsel 

who are knowledgeable about the 

needs of this population. 

Parental Rights

People with mild 

cognitive limitations 

can be caring, 

concerned and 

competent parents if 

the appropriate supports and services are in 

place. 

 Increase affordable access to legal 

representation by increasing funds 

to legal services and protection and 

advocacy services. Tie this new 

funding to a mandate to use it for

representation of individuals with 

mild cognitive limitations in civil 

matters, such as guardianship and

parental custody. 

RECOMMENDATIONS: 

 Assure that people with mild cognitive limitations are able to

participate in parenting classes

while in school or as young adults. 

 Encourage agencies to involve resources experienced in working 

with individuals with mild 

cognitive limitations in providing 

assistance with child care and child

protective services. 

 Offer Planned Parenthood services

and parenting classes for individuals

with mild cognitive limitations early

in the child welfare process.  Urge the Department of Justice to 

aggressively examine cases on 

parental rights issues under Title II 

of the Americans with Disabilities 

Act. 

 Help people with mild cognitive 

limitations to identify and network

with natural supports that may exist,

such as extended families,

neighbors, church members and

others who might provide

information, advice or assistance on 

parenting issues. 

 Educate child welfare agencies, 

family courts and others that

individuals with cognitive 

limitations can be competent and

effective parents, and how best to 

81
PCMR Report

Citizenship and Civil Rights 

cate limited information or underSexuality Rights standing rather than criminal intent.

People with mild 

cognitive limitations have 

the right to have intimate 

relationships, to get 

married and to have 

children and have a full 

family life. 

 Assure that sexuality issues are addressed in accreditation standards 

for services that provide supports to 

people with cognitive limitations. 

 Develop policies that assure 

individuals with mild cognitive 

limitations have the opportunity to 

express sexuality and be protected

against victimization. 

RECOMMENDATIONS: 

 Educate parents, professionals and 

the public as to the right of 

individuals with disabilities to 

express their sexuality. 

 Assure that students with mild 

cognitive limitations are included 

in school educational programs 

about human sexuality. This 

education should also include 

planning for parenthood and 

protection against health concerns 

such as sexually transmitted 

diseases. 

 Provide information and 

counseling to individuals with mild 

cognitive limitations about how to 

appropriately express sexuality, 

such as public versus private 

displays of affection, and sexual 

expression only when both parties 

are consenting and without using 

coercion. 

 Educate those in the criminal 

justice system about issues of 

people with mild cognitive 

limitations around sexuality and to 

recognize that inappropriate sexual 

behavior may indi82
Psychological,

Familial

& Spiritual

Well-Being
PCMR Report

Marissa 

She speaks softly but openly about her life. At forty-three, Marissa

lives alone in a quiet apartment and works as a janitor at the Salvation Army

Day Care Center. Marissa says her life is really good now, but she has been

through a lot of pain. 

Adopted at an early age by an older couple, Marissa's adopted parents 

are now deceased. They set high standards for her, standards that that Marissa

had a hard time fulfilling. She was placed in special education in school and

when she graduated, Marissa went to work in a factory. Shortly afterward, 

she got married to a man she describes as a "tough character." They quickly

had four children then a fifth several years later. 

Marissa's husband had problems with alcohol and gambling. He also abused her and the

children until, finally, he went to prison. Marissa

was in poor physical health most of the time. She

also had mental health problems due to the stress

of having five children and an abusive husband. 

All of her children went into foster care and were

eventually adopted against her wishes. 

Marissa's life has been a lot better since 

she divorced. It was only after losing her

children that she came to the attention of the

service system. Now she gets SSI and

vocational supports due to her mental health

problems. There is a delightful twinkle in her

eyes now when she talks about the new love

she has in her life. 

Recently, Marissa's life took an exciting turn when he was reunited with

her youngest son. The woman who adopted Marissa's youngest just happened to work for social services in the parent aide program. Understanding

the challenges and difficulties people sometimes experience in trying to raise

children, she felt it was in the boy's best interest to develop a bond with his 

birth mother. Now Marissa can visit her son. Though she only sees him three 

or four times a year, she is very happy to know her son is doing well. 

There is still sadness in Marissa's life because she still does not know 

about her other four children. Not knowing where they are or how they are 

really hurts. Her pain has been eased a little now because she's recently 

been reunited with her own birth family and found new support with her birth 

parents and siblings. Marissa has had a hard life, full of pain and fear, but it's 

okay now and getting better every day. 

85
PCMR Report

Elisa

Elisa is a young woman who 

lives on the sunny West Coast. 

She is trying hard to be a good 

parent to her two sons, 20 and 22, 

but it's hard. Elisa was a victim of 

child abuse and, later, came to 

abuse her own children. She 

wants help for herself and her 

sons so they can heal from being 

abused and abusing, but she hasn't 

had much luck in fording the help 

she needs. She says that there 

seems to be a world where people 

with disabilities live that's 

different from everyone else's 

world. 

Elisa says that they are living at poverty level and she believes 

they will become burdens to society because she and her sons cannot 

function the way others do. Elisa says, "We do not fit into society yet 

we continue to try, in order to survive." 

Elisa says that other children were quite cruel to her when she was 

young because she looked different from most children. Her head was a 

little bigger and very round. Even now that she's in her 40s, she says she 

still does not look like others. "It's like I have gotten stared at all my life 

because I look different and others couldn't figure out why. . . neither 

could I until I discovered that me and mine are autistic." She says that 

the people in our society do not accept the differences that other people 

have. 

Elisa has hope. "There is a place for me and mine in this world," 

she says. "I just need to find it. It's like the first step to becoming 

independent is the true realization that I need to take responsibility for 

myself and my actions. I need to honor the way I am and stop trying to 

change the world to suit me or change me to match the world. The 

world is going to continue to be cruel and heartless. . . the system we 

live in will continue to fail somewhere for someone. I cannot stay stuck 

in the helplessness of how the system has failed me and mine. The anger 

does nothing more than hurt me. I am stopping it through understanding. 

That seems to me to be the only way I can recover from the years of 

abuse and torment." She also is concerned for her sons, the two most 

important people in her life, who cannot take care of themselves either. 

86
PCMR Report

Psychological, Familial

and Spiritual Well-being

All of us want to be happy. For

most of us being happy means having a

family, friends, a home, a job we like and

enough money to buy what we need. We

want to be with people we care about

and who care about us. We want to be

able to take care of our families and keep

them well and safe. We want to be welcome in the church we have chosen to

attend. 

People may give up on getting the things

they want and become depressed or withdrawn or they may use extreme behaviors to try and get what they need (Reiss,

1999). 

People with mild cognitive limitations may struggle to be happy and it is

no wonder. They are exposed to stigma

and other negative attitudes all through

their lives. Treated as objects to be 

avoided, they find few friends in life. They

are likely to be unemployed as adults and

are rarely asked for their opinions because cause people assume they are not smart

enough to have any. It is common for 

When people don't get their basic

desires met they are not happy. Unhappy

people have poor quality of life and may

have behavioral or personality disorders

and even symptoms of mental illness.

these individuals to think badly of themselves and have emotional scars from

being made fun of as a child. The most

common problem is low self-esteem

(Reiss, 1999). 

People with mild cognitive, limitations may 

struggle to be happy and it 

is no wonder. They are exposed to stigma and other 

negative attitudes all 

through their lives. They are 

treated as objects to be 

avoided and find few friends 

in life. They are likely to be 

unemployed as adults and 

are rarely asked for their 

opinions because people 

assume they are not smart 

enough to have any. It is 

common for them to think 

badly of themselves and 

have emotional scars from 

being made fun of as a 

child. The most common 

problem is low self-esteem.

As adults they struggle to find significant life partners, keep their marriage

or other relationships stable, raise children, and make enough money to survive. Most of them have the added problems of low incomes, not being well educated, and not knowing where to find the

assistance they need. It is not surprising

that many of them have mental health

problems and may have difficulty finding

happiness. 

For those who become parents, the

joy of having children is mixed with the

added strain of holding the family together

and meeting their needs. Having children

means having to learn many new things in

order to raise them and interacting with

87
PCMR Report

Psychological, Familial and Spiritual Well-being 

schools, doctors, and others on their behalf. They must use available resources 

to be able to care for themselves and

their children and learn how to function 

within a society that does not know 

how to treat them. Individuals with 

mild cognitive limitations are not 

prepared to do this (Tymchuk, 1999). 

People with mild cognitive 

limitations run into difficulties when it 

comes to belonging to churches, too. In 

"Spirituality and Self-Actualization: 

Recognizing Spiritual Needs and

Strengths of Persons with Cognitive 

Limitations," William Gaventa and 

Roger Peters relate several stories of

people with mild cognitive limitations 

and their faith and experiences with 

churches. What comes through loud 

and clear is that church is a source of

comfort and strength and, in many 

cases, an experience that changes lives 

and behavior. But in every case, 

churches had to learn how to meet the 

needs of this part of their congregations. 

Many churches, synagogues and

temples have classes especially for

people with more severe and obvious 

disabilities. But people with mild 

cognitive limitations are often left out 

because no one thinks of them. 

Religious groups do not always make 

accommodations to help people with 

disabilities participate in ceremonies 

such as baptism or confirmation. This 

can be because there is an assumption 

that the disability will make the person 

unable to understand religion or that 

they don't need the rituals because they 

are "special" and already a shoo-in for

heaven (Gaventa & Peters, 1999). 

People with mild cognitive 

limitations face hard challenges in 

relation to their 

psychological, familial and spiritual 

well being. Because their disability is 

mild, they are not usually eligible for

services that are designed to match their

needs. So they must seek help from 

literacy councils, welfare programs, 

food banks, food stamps, low-income 

housing programs and other social 

services that do not make allowances 

for disability. The search to find the 

supports and services they need can be 

even harder because they do not know 

what is available, may have limited 

understanding of what is needed, and 

may not be able to read well. To add to 

the difficulty, health care, education, 

social and other services for low 

income families have been greatly 

changed or reduced (Tymchuk, 1999). 

Though some generic services 

exist that can provide support, these resources are not well known or used. It 

is hard for people with mild cognitive 

limitations to benefit from them 

because the rules for who is eligible are 

different for each program, the way 

income is determined is confusing, and 

application processes are complicated 

(Tymchuk, 1999). 

Self-advocacy groups enable 

people to learn about their rights and

how to speak out for those rights. Many 

offer ongoing learning opportunities, a 

network of support through peers and a 

vehicle through which both individual 

and systemic concerns can be 

effectively addressed. Most of the 

groups that exist sprang from the avid 

interest and energies of a few people in 

a particular area with parallel needs and

concerns and most have evolved with 

little or no financial resources to 

support the effort. Funding is needed to 

stabilize existing groups and 

88
PCMR Report

Psychological, Familial and Spiritual Well-being 

enable them to continue and expand their

present supports, and to create and maintain new groups. 

people to live fulfilling, happy lives. People

with mild cognitive limitations may face

their greatest challenges in these areas because their needs are often invisible to the

very systems and agencies from which they

need assistance. 

Psychological, familial and spiritual

well-being are important in order for 

Resources 

Gaventa, William and Peters, D. Min., Roger K. (1999). Spirituality and 

Self-Actualization: Recognizing Spiritual Needs and Strengths of Persons 

with Cognitive Limitations in The Forgotten Generation: The Status 

and Challenges of Adults with Mild Cognitive Limitations in America. To 

be published. 

Kane, Ph.D., William, Rogers, Ph.D., Everett M. and Avila, Ph.D., Magdalena. 

(1999). Community and Culture: World Views and Natural Affiliations as 

the Basics of Understanding, Trust, Assistance and Support in The Forgotten Generation: The Status and Challenges of Adults with Mild 

Cognitive Limitations in America. To be published. 

Reiss, Steven. (1999). The Value-Based Happiness and Mental Health of 

Persons with Mental Retardation in The Forgotten Generation: The Status 

and Challenges of Adults with Mild Cognitive Limitations in America. 

To be published. 

Tymchuk, Ph.D., Alexander J. (1999). Family Life: Experiences and Outcomes of People with Mild Cognitive Impairments in The Forgotten Generation: The Status and Challenges of Adults with Mild Cognitive 

Limitations in America. To be published. 

Resource for 

Marissa's Story 

Webster, Susan Kidd (ed.). (1993). Preserving the Bond, A Collection of 

Family Stories. Madison: Wisconsin Council on Developmental Disabilities. 

89
PCMR Report

Recommendations in Psychological,

Familial and Spiritual Well-being 

Fragmented

Support 

one aspect of life. This collective 

mindset should include a shared recognition of the need to change the 

delivery and content of services. People with mild cognitive limitations must 

seek help from literacy 

councils, welfare programs, food banks, food 

stamps, low income 

housing programs, and 

other social services 

that are not tailored for 

their needs—a "mix and 

mesh of fragmented, isolated services." 

A proactive holistic approach:

All people are entitled to the services

and supports that they need. 

Supports should offer a holistic

approach with a focus on pro-action

toward enhancing an individual's

quality of life issues rather than

belatedly reacting to the invariable

crises that arise. 

Self-determination: Selfdetermination is a key to a person's 

happiness and should be available

to all people, coupled with the

opportunity to experience and practice

full citizenship. Supports should

seek to enhance the capacity for

self-determination and full

citizenship through a personcentered and life long focus that

drives not only the quantity, but also

the

RECOMMENDATIONS 

 Base all supports on the following 

principles: 

-

quality, of supports that are based

in strong values. Professionals and

educators should be educated

regarding these values and how to 

thread them through supports provided to individuals from this community. 

Collaboration: We need greater

collaboration among Urban League,

NAACP, self-advocates, health care,

mental health, child welfare, disability, vocational rehabilitation, religious

organizations, nonprofit groups, private and other pertinent groups. Such

groups should have a shared responsibility and a shared capacity to provide supports to all populations. As

their missions are parallel, their mission statements should reflect collaboration and an approach that emphasizes the whole person, not just

Empowerment: Supports should

empower individuals to gain self-confidence and the ability to speak out

and make decisions about their needs

and desires, their hopes and dreams. 

The voice of the individual should be

revered in directing a desired future

and life goals. 

90
PCMR Report

Psychological, Familial and Spiritual Well-being

High quality programs: Mechanisms should exist that assure 

supports and services provided are 

of high quality, as defined by the 

people being supported. Research 

is needed to identify the magnitude 

of this population and their needs. 

Yet the strategies used to gain 

information should not be invasive 

and should respect the right of the 

individual not to participate. 

Participation must be an informed 

choice. 

Spirituality: There needs to be an

increased emphasis on helping the 

spiritual community recognize and

understand the needs of individuals 

with mild cognitive limitations. 

Collaboration 

All groups that are working to address a family's 

needs should work in 

collaboration so that 

their needs are supported fully and consistently. 

Cultural diversity: Key among the 

principles that should be addressed

is to strengthen cultural diversity.

While this concept certainly

contains aspects of race and

ethnicity, it must also embrace 

tribal issues and sensitivity to

gender. Appreciation for the

richness that comes from diversity

and respect for the traditions within

particular cultures are precursors 

for true inclusion and acceptance—

a true community. 

RECOMMENDATIONS: 

 Develop a Collaboration Task Force 

comprising a major private network

of families, self-advocates, 

advocacy groups, faith-based

networks, corporate 

representatives, culturally diverse 

groups, tribal governments, Food

and Drug Administration, 

representatives from the National 

Institute on Health, University 

Affiliated Programs, and others. 

Family focus: Just as supports often focus on part of a particular

characteristic or need of an

individual, so too are individuals

supported without consideration of

the role they play within their

family unit. Particularly in relation

to individuals with mild cognitive 

limitations, issues of family, marriage and parenting are profoundly

important. Failure to recognize the

impact of the individual on the

family or that of the family on the

individual results in insensitive 

supports that can be marginally

successful at best. A primary goal 

must be to strengthen and solidify

Among the recommended duties of

this task force are to rewrite the 

Developmental Disabilities Act to 

embrace the principles noted above 

to facilitate collaboration and

cooperation between the public and

private sectors, implement the 

recommendations contained in this 

Report. This Task Force should

work collaboratively to impact 

federal policy initiatives to support

self-determination and 

91
PCMR Report

Psychological, Familial and Spiritual Well-being 

empowerment, and encourage their

respective groups to register to vote

and participate in the political process

to improve the existing system. 

 Educate policymakers about the 

importance of putting money into 

self- advocacy efforts. Funding 

should also be forthcoming to 

support activities that enable 

people to gain in self- knowledge, 

explore their heritage and 

embrace cultural traditions. Funding for 

Self-Advocacy

Create a series of peer-to-peer

teaching videotapes. Support 

individuals with mild cognitive 

limitations to talk about the issues 

on videotapes and share their 

ideas about how to improve 

supports, become more empowered, speak out more 

confidently and other aspects that 

help to educate their peers and 

others. 

Federal support is not 

flexible enough to establish and maintain 

self-advocacy groups 

despite the apparent 

success and relative 

little expense of these 

peer support groups. 

Universally Designed 

RECOMMENDATIONS: Resources 

Generic services should 

be universally designed 

and provide accommodations for people who have 

mild cognitive limitations 

so that they can make 

the best use possible of 

these resources. 

 Create Federal policy initiatives that

support self-advocacy groups and

activities that enable people to gain in

self-knowledge. Self-advocacy 

groups enable people to learn about

their rights and how to speak out for

those rights. 

Funding should be made available to

self-advocates to stabilize existing

groups and enable them to continue

and expand their present supports and

to create and maintain new groups. 

Representatives from these groups 

should develop a national agenda and

be encouraged and supported in their

efforts to fashion a more value-based,

respectful and supportive service system. 

RECOMMENDATIONS: 

 Increase the ability of the Temporary

Assistance to Needy Families 

(TANF) program to respond to the

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PCMR Report

Psychological, Familial and Spiritual Well-being 

needs of people with mild cognitive

limitations. Those implementing

the TANF program should look to 

the disability community for

effective strategies on how to 

address the needs of individuals

with mild cognitive limitations. 

TANF should also recognize that

the families of individuals with

mild cognitive impairments have

needs beyond those necessary to 

get and keep a job and address

those needs. 

Limited Knowledge 

of Resources 

People with mild cognitive limitations are not 

aware of the generic or 

specialized resources 

that might benefit them. 

RECOMMENDATIONS: 

Public Education  Create a national institute or

clearinghouse. A repository of

materials about collaboration and

aspects of building supports for

people with mild cognitive

limitations, their families, and their

psychological, familial and spiritual

well-being. Existing clearinghouses

should be identified and contacted

to avoid duplicative efforts. 

Neither the public,

policymakers nor most human

services professionals are

aware of the needs people with

mild cognitive limitations may

have for lifelong supports. 

RECOMMENDATIONS: 

Sponsor a series of regional conferences to address issues of people 

with mild cognitive limitations on a 

broad basis and with the active 

collaboration of a broad array of 

partners in the public and private 

arena. Self- advocates should be 

leaders in these conferences. 

93
Health & 

Physical 

Well-Being 
PCMR Report

Cathy & David

Cathy lives with her family on the East Coast. She and her husband David are in their 30's and coping fairly well considering their

circumstances. Cathy has epilepsy that is, for her, an extremely 

serious seizure disorder. She has to be on medication continuously. 

The medication has had a traumatic impact on their lives. 

They have four sons from 2 to 10 

who are absolutely beautiful. They look

perfect with dark hair and eyes. Cathy's 

physician told her that the medication 

she took for her seizure disorder is 

what caused all four of her boys to have 

severe mental retardation. They are 

non-verbal (but very vocal) and have 

pretty extreme behavioral problems. 

All four are totally mobile and require 

constant supervision to prevent injury 

to them. 

Cathy's husband David is a very 

nice man who is patient with the 

children and devoted to the welfare of

the family. He works full time at a 

blue-collar job and rides the commuter

train to work despite the challenges he 

faces. 

Where was the medical 

community? Cathy did not understand

the traumatic effects possible if she had

children while on medication. If she 

was ever told, it was not in terms she 

could understand. After the first boy 

was born severely disabled, where was 

the counseling to help them understand

that the medication could have the 

same devastating effect on their next 

son and the next and the next? In the 

most medically sophisticated country in 

the world, people who live in the 

"margins" of life, with limited income 

and mild cognitive limitations often 

have an added disability—the lack of

quality and sensitive medical 

intervention. 

97
PCMR Report

Walter

For many years, Walter was in an institution for people with mental

retardation. It was a period in his life that he never liked talking about it, 

as there was always an underlying fear that someone might make him go

back. Back in those days, very competent people who seemed odd in

some way, maybe even just because they looked very different from

others, were put in institutions. Today, we have moved beyond that

injustice. 

Shortly after moving to

the community over twenty

years ago, Walter met a

young man named Alan

through a local citizen 

advocacy volunteer program.

Alan had been recruited to be

a friend to Walter—to help 

him succeed in community

life. Walter and Alan began

to go places together. As they 

got to know each other, their

relationship matured. Alan

helped Walter pick out spiffy 

clothes and find a job at the

local university. Walter taught Alan how to make coffee and what

friendship really means. When Walter encountered problems, Alan

helped him talk through them, and figure out how to solve them. 

With Alan's support, Walter made a place for himself in the

world. He became well known in his community, and well liked. He

even won an award for becoming a strong self-advocate, successfully 

taking control of his life. He became a role model for others with 

disabilities. He also became a valued staff person, proving to be

extremely dependable in rain or shine. "Uncle" Walter baby-sat for

Alan's children and was a fixture at family holidays and a constant

source of comfort in times of strife. 

When an aging Walter became ill, Alan made sure that he had

good medical care and that he understood what was happening to his

health and all about the possible treatments. He went with Walter to

the doctor and asked questions Walter didn't think of asking. Walter's 

final days were filled with the love and comfort of caring friends. At

the funeral service, the chapel was filled to capacity with friends and

coworkers. Still there are many people that miss Walter's humor and

humanity. 

98
PCMR Report

Rosa

Rosa has arthritis 

and what she calls a "bad 

digestions disease." She 

is on a special diet and 

sometimes gets very sick 

and has to go in for treatments to relieve the pain 

or to be able to eat anything again. 

Recently, when her Aid to Families with Dependent Children 

(AFDC) payment was decreased, they lost $171 a month in income.- 

Then her rent went up. Her food stamps that had gone up to $87 per 

month were immediately cut to $57 due to a $77 grant she received for 

her child in place of AFDC. Her Section 8 rent was raised again, $134 

to $154—no one told her why. She uses the $77 to buy her daughter 

food for the month. That leaves $577.78 for everything else—rent, 

medical care, phone, electric, school needs, child needs, toiletries and 

whatever is left after all of her expenses goes to buy her food. Sometimes she gets $50, sometimes $30. 

In April 1998, Rosa had to for two field trips for her 

daughter's school. That left no money at all for her food. "I will live on 

steamed rice and herb tea," Rosa said. She cannot eat the food bought 

for her daughter or she will become very sick and have to go in for 

treatments that will take more money, money she doesn't have. "How 

healthy is this?" she asks. 

"We live in America," Rosa says, "Life should not be this way! We did 

not ask for diseases or injuries. We should not be forced below poverty. We should not be punished and our family punished for our sickness." She describes her situation of not being able to work and not 

being able to borrow money to live as being caught in a "poverty prison." 

99
PCMR Report

Health & Physical 

Well-Being 

There are real challenges for

people with mild cognitive limitations

when it comes to caring for their

health and that of their children. One

of the first problems is getting health

care. 

Most Americans obtain their

health care coverage through jobrelated insurance. People with mild

cognitive limitations are at a 

disadvantage because most don't work

or their jobs have no health benefits. If

they work part-time and their income

changes from month to month, they

may only qualify for Medicaid part of

the time. Supplemental Security Income (SST) includes Medicaid but is

only for those with IQs under 60 or

IQs of 60-70 who have other physical

or mental disabilities that keep them

from working (Campbell, 1999). Many

people with mild cognitive limitations

will not qualify for SSI. Others qualify

because they are on Temporary

Assistance to Needy Families (TANF)

but these welfare benefits have a time 

limit. 

As an additional problem, states

are putting people who receive Medicaid or access it through TANF into

managed care. Managed care has strict

rules about how to get healthcare and

about canceling or missing

appointments. The rules and required

forms are very difficult for people with 

mild cognitive limitations to 

understand (Spitalnik & White- Scott, 

1999). Most managed care systems 

will not know that people have mild

cognitive limitations and will not make

allowances for their disability. 

Mothers with disabilities, 

particularly cognitive impairments, 

constitute a growing portion of the 

TANF caseload. A Kansas study 

showed 30% of the adult TANF 

caseload was learning disabled and 

26% had IQs at or below 80. People 

with mild cognitive limitations who 

receive their access to Medicaid 

through their TANF status may be 

more at risk in the movement to 

managed care because there is no 

process to identify them, safeguard 

their rights, and make sure they get the 

services needed (Spitalnik & WhiteScott, 1999). 

For those who do get health care, 

there are additional challenges. Many 

health care choices require thinking in 

a way that is very difficult for a person 

with mild cognitive limitations. One 

problem is that they often fail to know 

that a condition needs-medical care 

until it is serious. It is not unusual for

people with mild cognitive limitations 

to use emergency rooms for their

medical care. These individuals have 

difficulty understanding the benefits 

and risks of medical treatment and

what will happen if they do not follow 

the doctor's advice. Not understanding 

how what they do affects their health 

puts them at high risk for things like 

sexually transmitted diseases, 

unplanned pregnancies, cigarette 

smoking, physical and sexual abuse 

(especially for women), and alcohol 

and substance abuse. Like other poor

people they are at health risk because 

of poor nutrition and eating habits 

(Spitalnik & White-Scott, 1999). 

100
PCMR Report

Health & Physical Well-Being

is better or the same when it is really 

worse because they think that is what

the doctor or nurse wants them to say 

(Spitalnik & White-Scott, 1999). 

These individuals

have difficulty under

standing the benefits and

risks of medical treatment and what will happen if they do not follow

the doctor's advice. Not

understanding how what

they do affects their

health puts them at high

risk for things like sexually transmitted diseases, unplanned pregnancies, cigarette smoking, physical and sexual

abuse (especially for

women), and alcohol and

substance abuse. 

It is doubtful that doctors will 

realize that they are not getting accurate 

information from patients with mild

cognitive limitations or that the patient

even has a disability. No formal 

curriculum exists for training 

physicians in the care of people with 

mild cognitive limitations except in 

pediatrics. Some pediatricians try to 

continue to serve their patients once 

they are adults but pediatricians are not 

trained to recognize adult diseases. If

hospitalized, adults with mild cognitive 

limitations often have difficulty getting 

the care they need- because they lack

some of the communication skills 

necessary on an adult hospital unit

(Spitalnik & White-Scott, 1999). 

People with mild cognitive limitations get left out of national efforts to 

improve people's health. Healthy 

People 2010 (HP2010) is a process to 

help Americans live longer, healthier

lives. A major shortcoming of HP2010 

is that there is no way to identify 

people with mild cognitive limitations. 

Part of the process for HP2010 is the 

Behavioral Risk Factor Surveillance 

System (BRFSS) which is a telephone 

survey of adults used to get information 

about their health. People with mild

cognitive limitations have difficulty 

answering phone surveys and will not

willingly admit their disability. Mild

cognitive limitations are usually 

identified during school years but the 

BRFSS does not include children 

(Campbell, 1999). 

Taking care of your health means 

being able to communicate well with 

your doctor, understand instructions 

about medications, and be able to 

understand how much medicine to take 

and when to take it. Poor education and 

lack of independent living skills may 

prevent people with mild cognitive 

limitations from being able to do all 

these things for themselves or their

children (Spitalnik & White-Scott, 

1999). 

When they are getting treatment, 

people with mild cognitive limitations 

are less likely to admit when they have 

not followed the doctor's instructions. 

This can be because they did not

understand the instructions or did not 

understand the relationship between 

their symptoms and the treatment. They 

may say their health 

Traditional public health entities 

have seen mild cognitive limitations as 

a condition to be prevented and paid

little atten101
PCMR Report

Health & Physical Well-Being Resources 

tion to the health care of people with 

the condition (Campbell, 1999). People 

with mild cognitive limitations are not 

easily identified by the health care 

system and are a medically 

disadvantaged population (Spitalnik & 

White-Scott, 1999) but diagnosing 

their disability may cause stigma and

labeling that could be worse than the 

cognitive limitation (Kane, Avila, & 

Rogers, 1999). 

Campbell, Vincent A. (1999). The 

Healthy People 2010 Process 

and People with Mild Mental 

Retardation: Difficulties Related 

to Surveillance and Data Collection in The Forgotten Generation: The Status and Challenges of Adults with Mild 

Cognitive Disabilities in 

America. To be published. 

Kane, Ph.D., William M., Avila, 

Ph.D., Magdalena, and Rogers, 

Ph.D., Everett M. (1999). Community and Culture: World 

Views and Natural Affiliations 

as the Basics of Understanding, 

Trust, Assistance and Support in 

The Forgotten Generation: 

The Status and Challenges of 

Adults with Mild Cognitive 

Disabilities in America. To be 

published. 

It is clear that people with mild 

cognitive limitations face tremendous 

challenges when it comes to health 

care. Children are usually identified as 

having mild cognitive limitations 

during the third to sixth grades when 

schoolwork gets harder and they begin 

to lag behind. Most people with mild

cognitive limitations, once they leave 

school, disappear into the general 

population. However, the problems 

that became apparent during school do 

not disappear in adulthood but remain 

problems even if people are not in the 

service system (Campbell, 1999). 

People at especially high risk for

disease, injury, and disability often 

lack the resources to cope with their

problems (Kane, Avila, & Rogers, 

1999). Health care providers are 

usually unaware of the disability and

the problems it may cause for adults 

struggling with their own health care 

and that of their children. 

Spitalnik, Ph.D., Deborah M. and 

White-Scott, M.D., Sheryl.

(1999). Access to Health Services: Improving the Availability of Health Services for People 

with Mild Cognitive Limitations 

in The Forgotten Generation: 

The Status and Challenges of 

Adults with Mild Cognitive 

Disabilities in America. To be 

published. 

A better approach to solving the 

problems of adults with mild cognitive 

limitations is to develop public health 

policy and programs that support all 

adults. This would ensure that adults 

with mild cognitive limitations, 

whether we identify them or not, 

would get the services and supports 

they need (Kane, Avila, & Rogers, 

1999). 

Resource for 

Rosa's Story 

Hoffman, Caroline & Fisher, Amy. 

(1998). Families in Poverty: 

Parents with Disabilities and 

their Children. Madison: Wisconsin Council on Developmental Disabilities. 

102
PCMR Report

 

Recommendations in 

Health & Physical Well-Being 

Socialization 

Adults with mild cognitive limitations often 

need supports that offer 

socialization opportunities and that, in turn, improve their health and 

well-being. 

RECOMMENDATIONS:

RECOMMENDATIONS:

 Train and encourage health care professionals to be sensitive to issues of

race, ethnicity, diversity and culture,

as they are relevant throughout the

health care arena. 

 Educate health care professionals 

about the concept of self-determination and of how to help people—including those with mild cognitive 

limitations to make truly informed 

health care decisions. 

 Encourage those in the health care

industry to have a holistic approach

to health care, with sensitivity to the

role that a person's overall quality of

life plays in their health and physical

wellbeing. 

Sensitivity Issues 

Cut Across Health 

Services 

Health care professionals 

are focused on health 

needs and often lapse in 

attending to the whole 

person, in being sensitive 

to the broader humanity 

of the people they treat. 

 Urge policymakers, legislators and

insurance providers to collaborate to 

provide resources to support alternative funding for social supports for

people with mild cognitive 

limitations. 

 Develop and implement curricula to 

train providers to address 

comprehensive psychological 

factors including sexuality and

developmental life span issues of

individuals with mild cognitive 

limitations. 

 Assure that services provided in 

community based settings supports 

quality of life. Such services should

assure the participation of

consumers/ providers in identifying 

socialization activities that are 

developmentally focused, and age 

and gender appropriate.

103
PCMR Report

Health & Physical Well-Being 

may include special education, 

public health (birth and death 

records) Medicaid, vocational 

rehabilitation, mental health, 

mental retardation. Critical issues 

include protection of individual 

identity, the disinterest of needed

participants, and varying diagnostic practices. Consumer involvement is critical to guide the 

process and govern the use of data.

Surveillance 

Numerous factors 

make it difficult to survey and study the 

health care needs of 

people with mild cognitive limitations. 

RECOMMENDATIONS: 

 Assure the federal government 

develops sampling strategies, 

questions and survey vehicles in 

studies of health service access and 

quality that include adults and 

children with mild cognitive 

limitations. Such efforts should be 

achieved through an interagency 

effort involving the Department of 

Health and Human Services, the 

Social Security Administration, and 

the Department of Education, 

collaborating with advocates, 

consumers and organizations of 

professionals. 

 Develop state-based individual-related surveillance through the 

linkage of agency databases. 

 Establish within states interagency 

committees that include advocates 

and consumers, to explore the feasibility of linking databases that can 

address risk factors, identify prevalence, service use, outcomes, secondary conditions, etc. Participants 

104
FinalSession
T

PCMR Report

The Final Session

cognitive or otherwise, 

tends to be over

plistic, and very

ch onedimensional." Some 

sim

mu

people with mild 

disabilities may be able 

to lead a healthy, 

wholesome, satisfying 

life-style if they have 

the supports that they 

need. For others, 

difficult life circum

The Summit closed with a 

plenary session in which 

representatives of the Work 

Groups summarized their 

recommendations for the areas 

that they addressed. Then 

several speakers shared their 

thoughts regarding The 

Forgotten Generation. 

Bob Williams first formed. A refocus of

attention to this group is long

overdue. Self- advocates have a

wealth of inferstances, such as poverty,

compound the limitations and

complex supports may be needed

just to survive. 

"Let me suggest that we

could benefit from taking a

similar more holistic, ecological

approach to disability more

enerally. We need to continue to

ook at the level of an individual's

disability as one importan

g

l

t

indicator of the likely support

needs he or she probably has. But,

we also need to look upon disability as one of many characteristics

— like income, family stability,

education and work history, as

well as race and gender — the

interactions of which, taken

vide a more indepth understanding of the persotogether, help pro

n

and their support needs." 

Williams cautioned the

audience to remember that

individuals with so called mild

cognitive disabilities, represent

the majority of those for whom

advocacy organizations like

PCMR, The Arc and AAMR

Bob Williams, Deputy 

Assistant Secretary for Long 

Term Care and Disability, began 

his remarks at the closing 

plenary by thanking PCMR for 

having the insight and foresight 

to convene this Summit to 

examine issues surrounding 

people with mild cognitive 

limitations. "Historically, PCMR 

has played its most valuable role 

in helping to inform and shape 

public policy and other key 

practices, when it has shed light 

on the major challenges facing 

their constituents, and then, 

proposed strategies to address 

these challenges in a way that 

betters, and strengthens, our 

nation as a whole." Williams 

indicated that this Summit 

follows that rich tradition. 

-

 mation to share

and can teach the rest of us much

about this population. In closing,

Williams noted that participants

should include a focus on

assistive technology and increasing the universality of

information and information

technology. 

John Monahan 

John M. Monahan, Deputy 

Assistant Director, 

Administration of Children & 

Families, Department of Health 

& Human Services, congratulated participants for their 

hard work during the conference 

and underscored the importance 

of a focus on people with mild 

cognitive limitations, people 

whose lives have often been 

challenged with limited support. 

w

When the term mild 

disability began to surface first 

in the disability field and later 

in public policy, it was used 

with the best of intentions, 

Williams noted. However, "the 

notion of mild disabilities, 

h th

Monahan spoke of the 

critical efforts that were being 

made to 

ere 

107
PCMR Report

address this population through

Temporary Assistance to Need

Families (TANF) and Headstart.

Through the TANF program, creative efforts are being made to help

people get and stay employed.

Supports such as childcare and extended health care benefits are being provided to people in an effort

to ease the burden that people often face as they move from welfare

rolls into self-sufficiency. 

fect the lives of people with mild

cognitive limitations. She applauded the hard work that participants had invested into developing

a wide range of powerful recommendations. 

Bradley reminded the group

that these recommendations would

be incorporated into a Report to

the President and the collection of

papers would be published in a

book entitled The Forgotten Generation: The Status and Challenges of Adults with Mild Cognitive Limitations in America.

A listing of these papers appears

on the following page. 

Headstart programs have been

greatly expanded. These programs

are vital to give children the best

start possible in life. They are particularly wonderful resources for

families in which parents have mild

cognitive limitations as they focus

on providing children the stimulation and challenge they need in those

early years and can help to spot

problems the child might have, such

as illness or developmental delays.

Headstart programs are also working to prepare the children of today, including those with mild cognitive limitations, to lead healthy,

successful lives as the adults of tomorrow. 

Bradley closed the conference by

challenging participants to keep the

focus on people with mild cognitive limitations alive so that these

individuals who are now so prominent in our minds will never be forgotten again. 

Valerie Bradley 

PCMR Chair 

After the groups had reported

their outcomes, PCMR Chair

Valerie Bradley extended her gratitude to the presenters at the Summit for their inspiring remarks and

challenging charges and the authors

of the background papers for their

efforts to identify the issues that af108
PCMR Report

The Forgotten Generation: The Status and Challenges of Adults with Mild Cognitive Impairments in American Society will include the following papers: 

Bogdan, Ph.D., Robert and Taylor, Ph.D., Stephen J. Building Stronger Communities for All: Thoughts about 

Community Participation for People with Developmental Disabilities. 

Bradley, Valerie J., Agosta, John M. & Kimmich, Madeliene. Social and Community Participation: How to Enhance 

Supports to People with Mild Cognitive Disabilities. 

Campbell, Vincent A. The Healthy People 2010 Process and People with Mild Mental Retardation: Difficulties 

Related to Surveillance and Data Collection. 

Dinerstein J.D., Robert. How People with Cognitive Disabilities and their Allies Are Coming Together to 

Protect their Civil Rights. 

Edgerton, Ph.D., Robert B. "The Hidden Majority" of Persons with Mental Retardation/Developmental Disabilities. 

Galbraith, Suellen. A Home of One's Own: What Housing and Social Services Agencies Can Do To Afford 

People the Dignity and Support for Personal Housing. 

Gaventa, William and Peters, D. Min., Roger K. Spirituality and Self-Actualization: Recognizing Spiritual 

Needs and Strengths of Persons with Cognitive Limitations. 

Gettings, Robert. Renegotiating the Social Contract: Rights, Responsibilities and Risks for Persons with 

Cognitive Limitations in an Era of Less Government. 

Kane, Ph.D., William, Rogers, Ph.D., Everett M. and Avila, Ph.D., Magdalena. Community and Culture: World 

Views and Natural Affiliations as the Basics of Understanding, Trust, Assistance and Support. 

Kregel, Ed.D., John. Freedom to Work: What Government and Employers Can Do to Assure Income and Health 

Security while Providing Opportunities and Rewards for Employment. 

Luckasson, Ruth, J.D. The Criminal Justice System and People with Mild Cognitive Limitations. 

Reiss, Steven. The Value-Based Happiness and Mental Health of Persons with Mental Retardation. 

Rogan, Ph.D., Pat, Leucking, Richard and Held, Mary, M.S. Career Development: What Schools, Agencies and 

Employers Can Do to Help People Identify, Select, Prepare For and Continue to Grow in Careers That Offer 

a Future. 

Silverstein, J.D., Robert. Our Nation's Emerging Disability Policy. 

Spitalnik, Ph.D., Deborah M. and White-Scott, M.D., Sheryl. Access to Health Services: Improving the Availability 

of Health Services for People with Mild Cognitive Limitations. 

Tymchuk, Ph.D., Alexander J. Family Life: Experiences and Outcomes of People with Mild Cognitive Impairment. 

Tymchuk, Ph.D., Alexander J, Lakin, Ph.D., K. Charlie, and Luckasson, J.D., Ruth. Life at the Margins: Intellectual, 

Demographic, Economic, and Social Circumstances of Adults with Mild Cognitive Limitations in an Increasingly Complex Society. 

Wehman, Ph.D., Paul, Targett, Pam, Eltzeroth, Helen, Green, Howard, Brooke, Valerie, and Barcus, J. Michael. 

Support on the Job: What Business, Industry and Government are Doing to Support People with Mild 

Cognitive Limitations to Achieve Economic Self-Sufficiency Through Employment. 

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PCMR Report

PCMR Summit Participants 

Lorenzo H. Aguilar-Melancon 

Magdalena Avila 

Ruth Luckasson 

Howard Mandeville 

Paul Marchand 

John Mattingly 

Angela McCants 

John McClain 

Kathleen McGinley 

James Meadours 

T.J. Monroe 

Carol Beatty 

Robert Bogdan 

Valerie Bradley 

Marie Bristol-Power 

Ruth Brousseau 

Deb Brown 

Jessica Butler 

Tina Campanella 

Vincent Campbell 

Kathleen Courtney 

Carolyn Morgan 

Barbara Murdock 

Donna Nigh 

Catherine Nolan 

Roger Peters 

Elizabeth Pittinger 

Dennis Poole 

Roseanne Rafferty 

Carol Rasco 

Allen Crocker 

Virginia Cruz 

Curtis Decker 

Rene Denfeld 

Sheryl Dicker 

Robert Dinerstein 

Karen Ito Edgerton 

Robert Edgerton 

Robyn Edwards 

Don Regan 

Steven Reiss 

Victor Robinson 

Everett Rogers 

Robert Silverstein 

Rosalyn Simon 

Senora D. Simpson 

Tom E.C. Smith 

Deborah M. Spitalnik 

Nancy Sullivan 

Pam Targett 

Ann M. Forts 

Billie Friedland 

Suellen Galbraith 

William Gaventa 

Robert Gettings 

Tawara D. Goode 

Judith Gran 

Victor Hall 

Emma Hambright Cathy Ficker Terrill 

Paula Hirt Nancy Thaler 

Eugene Thompson 

Alexander Sandy Tymchuk 

Jacquelyn B. Victorian 

Shirley Wade 

Joe Hollowell 

Karen Irick 

George Jessien 

Sally Jochum 

Bill Kane Nancy Ward 

Michael Wehmeyer 

Barbara Wheeler 

Sheryl White-Scott 

Kenton Williams 

Elise Young

Ruth Katz 

Fred Krause 

John Kregel 

Charlie Lakin 

Sandra Lawson 

110
CLOSING

THOUGHTS

1 1 1
PCMR Report

Closing Thoughts 

How incredibly frustrating it must be to, 

have a difficult time 

communicating to 

find it hard to 

understand, to be 

daunted by the 

puzzles that modern 

life brings, and to 

look for help only to 

find closed doors 

or closed minds. 

For people with 

cognitive limitations, the world is 

often a confusing, 

frightening and 

lonely place. 

How incredibly frustrating it

must be to have a difficult time

communicating, to find it hard to

understand, to be daunted by the

puzzles that modern life brings,

and to look for help only to find

closed doors — or closed minds.

For people with cognitive

limitations, the world is often a

confusing, frightening and lonely

place. 

Despite the incredible mountains of money that go into

services of every kind, people

with mild cognitive limitations

are often excluded from the very

services they need to 

survive, much less to thrive. They 

are not "disabled" enough for disability services; generic services 

do not accommodate for the 

unique learning needs of this 

population. They are truly the 

Forgotten Generation. 

Throughout the pages of this 

Report, the problems faced by individuals with mild cognitive 

limitations have been highlighted 

in snapshots of people's lives and

prose about their challenges. If

they are employed, people with 

mild cognitive limitations are 

likely to work in minimum wage 

jobs, only once in awhile or for

only a few hours a week; they are 

the last hired and the first fired. 

Often they are not able to find 

and keep jobs because what

others infer, they may need to be 

taught. 

People with mild cognitive 

limitations generally live in 

poverty. Most are not eligible for

disability benefits. Even if they 

can get Supplemental Security 

Income (SSI) or Social Security 

Disability Income (SSDI) their

incomes fall well below federal 

poverty guidelines. Low-income 

prevents people from being able 

to find safe and adequate 

housing; they abound in our

homeless shelters. Community 

life presents its own challenges 

with people facing expectations 

that they may not be able to meet 

in developing relationships, finding their

way around, understanding rules, 

handling money, being safe,

finding help — the list seems 

endless. 

Sometimes people with mild

cognitive limitations come in 

contact with the criminal justice 

system, a system that is not able 

to deal adequately with their

needs. Unequipped with the 

necessary knowledge or training, 

the system fails to assure 

protection of rights and equal 

justice. In civil rights, people 

with mild cognitive limitations

fare no better. Often stereotypes 

and misguided efforts to protect 

lead to the loss of rights, choice 

making, and children —even 

freedom. The stress-filled world

of this population often results in 

mental health concerns and

difficulty finding personal 

fulfillment and happiness. Health 

issues are equally sad:

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PCMR Report

that is easily understood by 

all and providing verbal 

counseling in simple and 

repetitious terms, take 

sensitivity and a little extra 

time, not great expense. 

Universal design demands 

that all professionals be 

provided the information and

training they need not only to 

understand the needs of this 

population but also to 

respond with sensitivity, 

compassion, and effective accommodations. 

preventive efforts are rare and Empowerment

when people do get health

services they often cannot

understand the doctor's

instructions. Among the general

medical community, there is little

understanding of the need to

make instructions simpler, to follow-up with people to assure they

understand, to get viable 

information regarding injury and

illness or to empower people to

be more responsible in their

personal care. 

 Throughout the recommendations are thoughts of empowering people with mild cognitive limitations to become better advocates for themselves in 

all areas of life. To do that, information, training and

supports are needed that enable 

people: 

 To learn 

 To make choices 

When seen as a whole, these

challenges are awesome. It is

hard to believe that in a society in

which information zooms past us

in papers, on TV, and over the

Internet, this large group of

Americans has remained hidden

for so many years. They are

hidden no longer. 

 To understand and protect 

their rights 

 To develop relationships 

 To find and keep jobs 

 To find help that is needed

 To understand their 

health care needs Also within these pages are

recommendations in every area

of life, recommendations that can

bring us closer to the inclusive,

supportive society this great

country should nurture. These

prescriptions have major themes

threaded throughout that are

worthy of mention. 

 To take control of their 

lives 

Prevention 

 Certainly prevention should

be a powerful focus in health 

care, but it is also the only 

way to address the many 

problems facing individuals 

with mild cognitive 

limitations. Appropriate 

supports can work to prevent 

unemployment, poverty, 

homelessness, mental health 

problems, incarceration, and

needless illness if they are 

readily available and responsive to the needs of this population. 

Universal Design, 

Prevention, Empowerment and Support. 

Woven together 

these threads can 

combine to create a 

strong, enriching environment in which 

people with mild cognitive limitations can 

do more than merely 

survive, they can 

thrive. 

Universal Design 

 All services should adopt

policies, procedures and

practices that welcome and

are accessible to all people,

including those with physical

or cognitive limitations.

Accommodations for people

with mild cognitive

limitations, such as putting

forms, questionnaires and

other documents into "real"

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PCMR Report

Empowerment also means the

use of technology that can enable people to better communicate, understand, work, live

independently and so much

more. 

The only hope is action — 

meaningful, powerful action — 

that translates these recommendations into realities. Strong and 

compassionate leadership can 

make all the difference. 

The only hope is 

action — meaningful, 

powerful action — 

that translates these 

recommendations 

into realities. Strong 

and compassionate 

leadership can make 

all the difference. 

Support 

 People need supports that are

responsive to their needs.

Sometimes this means

generic supports that are

available to everyone 

regardless of disability; at

other times it means the need

for specialized support such

as those provided through

disability organizations. Generic and specialized supports

are needed in every area from

helping people to learn

parenting skills to assisting 

people to negotiate public

transportation to assuring

people find the health care

they need. 

The information contained in

this report has for far too long

lain silent and ignored — lost

amid the thousands of other

human needs and challenges.

Now that it is starkly before us,

the question becomes how will

we respond. Will this report go

the way of so many others before

it—destined to be read by a few

and shelved by many? If so, a

generation of people who have

lived forgotten lives will die

forgotten deaths. And another

generation of children whose

lives have just begun will be

relegated to the same lonely path. 

115
117
PCMR Report

President's Committee

on Mental Retardation 

Valerie J. Bradley, Chair 

President 

K. Charlie Lakin, Ph.D. 

Director, Rehabilitation Research and Training

Center on Community Living and Integration

University of Minnesota 

Human Services Research Institute 

Cambridge, Massachusetts 

Minneapolis, Minnesota 

Deborah M. Spitalnik, Ph.D., Vice Chair 

Executive Director Ruth Luckasson, J.D. 

University Affiliated Programs of New Jersey 

Piscataway, New Jersey 

Regents Professor and Professor of Special 

Education 

College of Education Lorenzo Aguilar-Melancon 

Parent Advocate 

University of New Mexico 

Albuquerque, New Mexico El Paso, Texas 

T. J. Monroe 

Jacquelyn Blaney, MSW 

Executive Director 

Disability Rights Consultant 

Cincinnati, Ohio 

Independent Living, Inc. 

Baton Rouge, Louisiana Donna Nigh 

Former First Lady of Oklahoma 

Robert D. Dinerstein, J.D. President, Nigh Foundation 

Associate Dean for Academic Affairs 

Washington College of Law, American University 

Bethseda, Maryland Elizabeth C. Pittinger 

Executive Director 

Citizen Police Review Board 

Ann M. Forts Pittsburgh, Pennsylvania 

Motivational Speaker 

Center Harbor, New Hampshire Michael L. Remus 

Executive Director 

The Arc of Tennessee 

Nashville, Tennessee 

Sally Jochum 

Community Living Coordinator, 

Johnson County Developmental Supports 

Lenexa, Kansas Tom E.C. Smith, Ed.D. 

Professor and Associate Dean 

Joyce A. Keller College of Education 

Executive Director of JARC 

Southfield, Michigan 

University of Arkansas at Little Rock 

Little Rock, Arkansas 

John F. Kennedy, J.D.* 

President Cathy Ficker Terrill 

President Elect, American Association of Mental 

Reaching Up, Inc. Retardation (AAMR) 

New York City Vice President, Brain Injury Association 

Elmhurst, Illinois 

* Mr. Kennedy is now deceased. 

119
PCMR Report

Barbara Yoshioka Wheeler, Ph.D. 

Associate Professor of Clinical Pediatrics 

University Affiliated Program 

PCMR Staff 

Jane Browning* 

Executive Director 

John L. Pride 

Deputy Executive Director 

Laverdia T. Roach* 

Special Assistant to the Executive Director 

George H. Bouthilet, Ph.D.* 

Research Director 

Parthenia Dinora 

Special Projects Assistant 

Thelma B. Lucas 

Mental Retardation Program Specialist 

Children's Hospital of Los Angeles 

Los Angeles, California 

Sheryl White-Scott, M.D. 

Director 

Adult Health Services 

Westchester Institute for Human Development 

New York City 

Ex-Officio Members 

The Honorable Donna E. Shalala 

Secretary Joan Williams 

Special Projects Specialist 

Bena Smith* 

U.S. Department of Health and Human Services 

The Honorable Janet Reno 

Attorney General Program Analyst 

Sheila Whittaker* 

Administrative Officer 

Peggy Butler* 

Secretary to the Executive Director 

U.S. Department of Justice 

The Honorable Alexis M. Herman 

Secretary of Labor 

U.S. Department of Labor Angie Green 

Secretary to the Deputy Executive Director 

Terry Lion The Honorable Andrew Cuomo 

Secretary of Housing and Urban Development 

U.S. Department of Housing and Urban Development 

Clerk-Typist 

Dina Bergman 

Clerk-Typist 

*current staff Harris Wofford 

Chief Executive Officer 

Corporation for National and Community Service 

The Honorable Richard W. Riley 

Secretary of Education 

U.S. Department of Education 

Ida L. Castro 

Chair The mission of the President's Committee on

Mental Retardation (PCMR) is to act in an advisory 

capacity to the President and to the Secretary of Health

and Human Services on matters relating to policy and

programs affecting services and supports for people 

with mental retardation. 

Equal Employment Opportunity Commission 

Marca Bristo 

Chair 

National Council on Disability 

The Honorable Kenneth S. Apfel 

Commissioner of Social Security 

Social Security Administration 

Real outcomes for real people. This is the ultimate goal of lifelong inclusion. This is the challenge 

to the field of mental retardation into the next

millennium. 

120