President’s Committee On Mental Retardation 

Joseph A. Califano, Jr. PCMR Staff 

Chairman Fred J. Krause 

Executive Director Henry V. Cobb, Ph.D 

Vice Chairperson Alfred D. Buckmueller* 

Deputy Executive Director David M. Barrett 

Mrs. N. Lorraine Beebe Miss Linda Bass 

James D. Clements, M.D. Mrs. Nancy Borders 

Mrs. Jeanne C. Collier Mrs. Martha Brooks 

Jean K. Elder, Ph.D. Mrs. Helen Caldwell 

Arnold G. Gangnes Mrs. Fay Gold 

Michael R. Gardner Marcus Hamden 

John P. Greene Mrs. Nadine Harrison 

Morley Hudson Mrs. Beverly Keith 

Robert G. Jordon, M.D. Larry Lane 

Frank J. Menolascino, M.D. Allen Menefee 

Ana Navarro, M.D. Mrs. Jacqueline Mordecai 

Mrs. Dolores Norley-van Dyk Edwin Richardson, Ph.D 

Anderson W. Pollard Mrs. Laverdia Roach 

Ludwig Rothbein Mrs. Toni Ross 

Mrs. Cherrie Sevick Miles Santamour 

Mrs. Eunice Kennedy Shriver Mrs. Mattie Smith 

Mrs. Florence K. Simons Mrs. Pierette Spiegler 

Mrs. Margaret V. Tedone David Touch 

Samuel Whitman Consultants 

Ex Officio David Bilovsky 

The Attorney General Rosemary Ferguson Dybwad, Ph.D. 

The Secretary of Labor Maurice S. Flagg 

The Secretary of Housing and Urban 

Development 

Vincent C. Gray 

Dennis E. Haggerty 

The Director, Community Services 

Administration 

Arthur J. Lesser, M.D. 

George Tarjan, M.D. 

The Director, ACTION William H. Wilsnack

*Deceased 

ABOUT THE COVER 

Five-year-old Michelle could not walk when she was enrolled in a public school special education class in 

Hamden, Connecticut. But she showed remarkable determination when her teachers, her family and the 

workers at Camp Rainbow (a community-based service) joined forces and developed a program that might, 

someday, allow Michelle to stand up and move forward on her own. It wasn’t easy; this mentally retarded 

child had to reach and pass many “milestones” that normal children take for granted. She had to learn to roll 

over, push up on her hands, crawl, sit up, and balance on her knees. Assisted by her team of helpers, 

Michelle worked on these detailed, sequential tasks for more than a year. 

Then it happened. Michelle learned to stiffen her shaky legs and stand. And with her hands above her head, 

holding tight to the fingers of a helper, she moved forward. This qualified Michelle to be a candidate for the 

“50-Yard walk” in the forthcoming Connecticut Special Olympics. It was at one of the practice sessions 

that Michelle “unhooked” from her helper at the starting line and walked 50 yards unaided—for the first 

time in her life. 

Paul Calaluce first recorded on film what happened when Michelle crossed the finish line that day as she 

and her teacher, Susan Mangen, hugged each other with an almost indescribable joy. Later, Martha Perske 

recreated the effort in another art form, in an attempt to show that such joy is part of the reward—for both 

the handicapped persons and their helpers—when milestones are reached in programs that work. 
MR78 

Mental Retardation: 

The Leading Edge 

Service Programs That Work 

A Staff Report of the 

President's Committee 

On Mental Retardation 

Washington, D.C. 20201 

U. S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE

OFFICE OF HUMAN DEVELOPMENT SERVICES 

The President's Committee on Mental Retardation 

For Sale by The Superintendent of Documents 

U.S. Government Printing Office 

Washington, D.C. 20402 

i 
This report was produced by New Directions Associates 

under contracts HEW-105-78-7301 and 54-78—HEW-OS. It 

also has utilized survey information gained from contract 

HEW-105-76-5001 from the Research and Development 

Division. Developmental Disabilities Office, which was 

completed by Random House. Inc. New York. 

Library of Congress Catalog 

No. 78-600132 

Robert Perske, Author

Martha Perske, Artist

Ian Elliot, Editor

Frank Golino, Graphic Designer

John DiGioia, Graphic Designer

Allen Menefee, Project Officer

Alfred Buchmueller, Project Officer

DEDICATION 

This report is dedicated to Alfred D. Buchmueller, one of this project's 

officers, who died suddenly on Sunday, October 8, 1978. For seven years, 

"Buck" served with distinction as a staff member of the Committee, rising to 

the position of Deputy Executive Director. And in those years, he was always 

active on the leading edge of the mental retardation movement. This kind 

man worked overtime, inspiring and motivating others to utilize fresh 

innovations as they appeared on the national scene. 

The influence of such a man as this does not stop when he dies. Buck's spirit 

will be with us for many years to come — as if he were still looking over our 

shoulders and cheering us on in our efforts to provide richer lives for citizens 

with mental retardation problems. 

The Members, Staff and Consultants of the Committee 
PRESIDENT'S COMMITTEE ON MENTAL RETARDATION 

WASHINGTON, D.C. 20201 

MAY 17, 1979 

The President 

The White House 

Washington, D.C. 20500 

Dear Mr. President: 

I am pleased to transmit to you a staff report which constitutes the Eleventh Annual Report of the 

President's Committee on Mental Retardation. 

This staff report is entitled, Mental Retardation: The Leading Edge - Service Programs that Work. 

Rather than offering broad recommendations, it describes in detail a wide range of successful 

programs currently underway throughout the Nation. These programs share a common goal: to bring 

mentally retarded citizens out of a past of rejection and stigma—into a future of hope, understanding, 

and personal pride as productive individuals. 

The report shows that increasingly, mentally retarded persons and their families are working with 

representatives of business, industry, government, and community organizations in an effort to 

respond to the total range of programs associated with mental retardation—from prevention to 

employment and independent living. 

The Committee looks forward to continuing to work with you and Mrs. Carter. 

Respectfully yours, 

Joseph A. Califano, Jr. 

Chairman 
INTRODUCTION 

Living in the present, we are prone to look to the past for the experience to guide 

us in shaping a new and more satisfying future. But the real hope of the future 

often lies in ventures which break out of the past and apply new tools to solve our 

problems. 

Mental retardation is a human condition which has come with us out of a long and 

dismal past. The past of more than a few short years ago provided very little out 

of which a hopeful future for retarded people could be fashioned. Only as the 

leading edge of imagination and love has pierced the obscurities and 

misconceptions of past experience could the full possibilities of a good life for 

mentally retarded people be revealed and brought to fruition. 

In recent years we have begun to develop new methods based on a new spirit of 

humane artistry in ameliorating the problems of mental retardation. We still have 

a long way to go; yet, as we look across this great land of ours, we find people on 

the leading edge of the present with new programs that work in providing 

satisfying and productive lives for people who are retarded—in family life, in the 

schools, in the places of residence, in work and in personal life. We find new 

relief of the spirit for retarded individuals and their families who grapple with 

inner agonies; new possibilities of constructive living for those in trouble with the 

laws of the community. We find a host of new approaches to mastering the risks 

of being born and the hazards of surviving intact in a difficult world. 

This Staff Report of the President's Committee on Mental Retardation, to which 

Robert and Martha Perske made substantial contributions, highlights a few of the 

communities throughout the country which have service programs that are really 

effective with mentally retarded children and adults. It responds, in part, to Mrs. 

Rosalynn Carter's request for information on mental retardation programs that 

work. While this report focuses on effective service programs, it touches only 

briefly on another leading edge that is just as important: prevention. A full report 

on preventive efforts is projected in a future PCMR report. 

Here then, are a few samples drawn from hundreds of equally exciting new 

ventures that are really working for mentally retarded people. The President's 

Committee is deeply grateful to all of the devoted workers in every part of the 

country who contributed freely and proudly a wealth of information on what they 

are doing from which these examples are selected. We know also that there are 

many more such programs in the making, not only on these designs but on other 

new and creative ones, as devoted people apply their minds and hearts to shaping 

the future for retarded people on the leading edge of our time. 

Henry V. Cobb 

Vice-Chairperson 

iv 
TABLE OF CONTENTS 

1-19 SECTION ONE: THE FAMILY 

3 — A Coordinated Effort To Take The Risk Out Of 

"At Risk" 

Follow-up Intervention for Normal Development 

(FIND) 

Inland Countries Regional Center 

814 No. Arrowhead Ave. 

San Bernardino, California 92401

5 — Parents Are Educators, Too 

Down's Syndrome Infant-Parent Program, 

The Center on Human Development, 

University of Oregon 

Eugene, Oregon 97403 

7 — In Home Care When It Is Needed 

The Home-Aid Resources Program of 

Washington 

State Department of Social & Health Services 

Bureau of Developmental Disabilities 

Olympia, Washington 98504 

10 — Teamwork In The Bronx 

South Bronx Community Services Team 

Bronx Developmental Services 

1200 Waters Place 

The Bronx, New York 10461 

13 — Salvaged Destinies 

Somerset Home School 

7030 Grant Ave. 

Carmichael, California 95608 

15 — Parents To Parents 

Pilot Parents 

Greater Omaha Association for Retarded 

Citizens 

3212 Dodge St. 

Omaha, Nebraska 68131 

16 — Parents As Professionals 

Training Parents as Program Coordinators 

Regional Center of Orange County 

500 So. Main 

Orange, California 92668 

18 — Trouble Shooting In Washington State 

The Troubleshooters 

1600 West Armory Way 

Seattle, Washington 98119 

20-31 SECTION TWO: PUBLIC SCHOOL 

EDUCATION 

21 — A Public School Education That Begins At 

Birth 

Spring Harbor Elementary School 

1110 Spring Harbor Drive 

Madison, Wisconsin 53705 

23 — The School That Held Its Own Childfind 

Molly Stark Elementary School 

Willow Road 

Bennington, Vermont 05201 

24 — The Exodus From Badger To Glendale Schools 

Glendale School 

1201 Tompkins 

Madison, Wisconsin 53716 

27 — The Immense Journey: From Basement To 

Classroom 

Owen J. Roberts Middle School 

Rural Delivery 1 

Pottstown, Pennsylvania 19464 

28 — Community Referenced Education 

La Follette High School 

702 Pflaum Road 

Madison, Wisconsin 53713 

30 — The Teaming Of Regular And Special Teachers 

East High School 

2222 East Washington Ave. 

Madison, Wisconsin 53704 

31 — Mentally Retarded Persons Go To College 

Metropolitan State College 

Metro College for Living 

1006 11th St., Box 6 

Denver, Colorado 80204 

32-43 SECTION THREE: COMMUNITY 

RESIDENCES 

33 — In Our Neighborhood, Yes! 

East Mount Airy Neighbors, Inc. (EMAN) 

820 E. Vernon Road 

Philadelphia, Pennsylvania 19119 

34 — The Residential Clusters of Eastern Nebraska 

Eastern Nebraska Community Office of 

Retardation (ENCOR) 

885 So. 72nd St. 

Omaha, Nebraska 68114 

37 — A Boot Camp For Community Residents 

Training for Independent Living (TIL) 

Ventura County Association for the Retarded 

P.O. Box 646 

Camarillo, California 93010 

39 — The Institution That Became a Community 

System 

Macomb-Oakland Regional Center (MORC) 

16200 Nineteen Mile Road 

Mt. Clemens, Michigan 48044 

41 — A Rural County Takes Care of its Own 

Tuolumne County Independent Living Project 

(TCILP) 

Route One, Seco Road 

The Jamestown Apartments 

Jamestown, California 95327 

44-51 SECTION FOUR: WORK 

45 — The Public Service Crews of Greater Los 

Angeles 

Community Redevelopment 

Center in Mental Retardation 

California State University, Los Angeles 

5151 State University Drive 

Los Angeles, California 90032 

47 — Job Training That Industry Understands 

Training Alternatives for Living and Learning 

(TALL) 

3103 Swope Parkway 

Kansas City, Missouri 64130

v
49 — In The Real Marketplace 

The Donut Shop 

Hallelujah Inc. 

8808 La Mesa Blvd. 

La Mesa, California 92401 

52-57 SECTION FIVE: SELF ASSERTION 

53 — "We Are People First" 

People First International 

P.O. Box 12642 

Salem, Oregon 97309 

55 — Art Expression That Changes People's 

Lives 

Alan Short Center 

521 E. Acacia 

Stockton, California 95202 

58-61 SECTION SIX: THE MENTALLY 

RETARDED OFFENDER 

58 — Becoming Somebody . . . The 

Constructive Way

Our House Two 

Home Two, Inc. 

P.O. Box 12012 

Nashville, Tennessee 37203 

60 — The School That Finds Its Students On 

The Streets 

The Flushing School 

The Association for the Help of Retarded 

Children 

New York City Chapter 

200 Park Avenue South 

New York, New York 10003

62-67 SECTION SEVEN: MENTAL HEALTH 

63 — They Tackle Limits and Disturbances At 

The Same Time 

Rock Creek Foundation for Mental Health, 

Inc. 

4936 Fairmont Ave. 

Bethesda, Maryland 20014

65 — A Program That Makes Therapists Out 

Of Parents 

Regional Intervention Program 

2400 White Ave. 

Nashville, Tennessee 37204

68-71 SECTION EIGHT: PREVENTION 

68 — The Other Side Of A Divided House 

72-75 SECTION NINE: SOME NEW 

DIRECTIONS 

vi 


The Family 

A COORDINATED EFFORT 

TO TAKE THE RISK OUT OF 

"AT RISK" 

An awesome package of forces 

comes as standard equipment with 

each newborn child. When the 

child is healthy and the 

environment is adequate, each 

intricately timed force triggers a 

portion of the rapidly unfolding 

natural process. Each organ is 

energized, enabling the infant to 

quickly triple in size, to become 

conscious of the surrounding world 

and to respond to it. 

The most crucial period in the 

development of a human being is 

the first few years of life. For 

example, the brain begins a rapid 

development in the mother's uterus 

and continues until shortly after the 

second birthday. The process then 

slows down and never speeds up 

again. 

We take these early automatic 

activities for granted in a, normal 

infant, but this should never happen 

when there is the slightest suspicion 

that retardation is present. These "at 

risk" children need dramatic interventions. If ever there was a time 

when the helpers and the healers in 

a community need to come 

together on behalf of a family, it is 

when the unfolding forces in the 

baby of the family are being 

blocked. 

Follow-up Intervention for 

Normal Development (FIND), San 

Bernardino, California 

Every time a newborn infant in 

danger of being developmentally 

disabled leaves one of the area's 

intensive or intermediate care units, 

an elaborate case management 

system swings into action. A FIND 

counselor closely monitors the 

development of the child and 

coordinates the interventions of a 

large number of agencies 

throughout San Bernardino, Inyo, 

Mono and Riverside Counties. 

The counselor is trained and supported by the Inland Counties 

Regional Center, and the agencies 

which join forces are the County 

Health Departments, Public Health 

Nurses and Mental Health Services, 

as well as a number of public and 

private programs. "We have to 

work together to help these infants," 

says FIND's program manager. 

"These little people have not yet 

received a diagnosis of 

developmental disability and we 

are doing everything we can to see 

that they don't get one." 

The process begins when a FIND 

counselor and key community 

agency representatives meet with 

hospital staff at the hospitals' intensive care discharge planning meetings. All infants found to be "at risk 

for developmental disabilities" 

(approximately 33 percent) and 

their parents receive specific 

follow-up interventions for 12 

months after the child leaves the 

hospital. The FIND counselor 

comes to the home periodically to 

systematically assess and record the 

child's development, assist with the 

parenting process and see that the 

coordination of services is being 

carried out according to the individual program plan. The process has 

five vital targets: 

 Do everything possible to 

increase the developmental levels 

of the infants. 

 Do everything to stop 

secondary handicaps, even if 

developmental disability is finally 

diagnosed. 

 Use every means available to 

assist with the development of parenting skills. 

 Improve the utilization of all 

maternal/child health resources in 

the area. 

 Collect vital data which can be 

used in realistic resource planning 

for the future. 

Although there are many cases 

being coordinated simultaneously, 

each case has its own series of 

problems which must be skillfully 

examined and solved one by one. 

For example: 

Richard, who had been flown to 

Loma Linda (CA) Medical Center 

shortly after birth, was treated for 

respiratory stress syndrome, 

sustained kidney damage, 

congenital heart failure and several 

infections. He was finally released 

to his parents at the age of three 

months. At that time, he was 

functioning developmentally at the 

one and one-half month level and 

was extremely irritable, with a 

negative reaction to touch by others. 

The FIND counselor coordinated 

an individual program that included 

assistance with nutritional 

management; advice on growth 

and development; help in healing 

the disrupted mother- infant 

"bonding" relationship caused by 

Richard's long hospitalization; 

assistance with referrals to Crippled 

Children's Services for funding, 

occupational and physical therapy 

evaluations; and emotional support 

to both parents, helping them to 

recover from their earlier harrowing 

experience of not knowing whether 

Richard would live or die. At the 

end of 12 months, Richard was 

functioning at the six-month level, 

and gaining. 

Mary, a premature baby, was 

born in an ambulance on the way to 

the hospital. Her mother was 

mentally retarded and had received 

no prenatal care. When Mary and 

her mother were discharged five 

days later, FIND followed the "at 

risk" case closely. The mother, who 

had been living in an institution, 

was helped to move into a 

community residence. She received 

daily visits by a nursing consultant 

and a community worker who provided infant care training, mealtime 

scheduling and general assistance. 

Later, a live-in homemaker stayed 

in the residence when the mother 

began to neglect Mary—to the 

point where the baby's life was in 

jeopardy. Still later, arrangements 

were made for mother and baby to 

live in a family care home. Finally, 

when the mother became 

disinterested in caring for the baby, 

she was helped to put Mary up for 

adoption. Mary was adopted and at 

one year of age was "developmentally normal" and no longer "at 

risk." 

3
The Family 

This creative coordination of 

community resources has given rise 

to some significant developments. 

A few were unforeseen and came as 

happy surprises: 

 Less than one-fourth of the 

infants on the caseload ultimately 

receive a diagnosis of 

developmental disability. 

 No new services have had to be 

created. The program uses the 

efforts and resources of agencies 

that already exist. 

 No additional funds are needed. 

The existing avenues of financial 

support are identified and, used. 

 This is one of the few programs 

in the nation that does not require a 

diagnosis or label before services 

can begin. 

 Public relations efforts are not 

needed. All work together, quietly 

and efficiently, to meet the needs of 

the "at risk" children. 

 A strengthening of family relationships and parenting skills is evident in almost all cases. 

 There are no bureaucratic 

clashes and no rivalry for funds. 

Instead, all agencies share in the 

successes of the program. There is a
The Family 

cooperative spirit at work, so 

that agencies offer support to 

one another when they attempt 

to justify their budget requests.  In many cases, no medical 

care is involved. Instead, there 

are only preventative health 

care activities. Nevertheless, 

many physicians watch the 

processes with interest and 

support the interventions. 

 The home, not the clinic, 

has become the arena for most 

of the interventions prescribed 

in the individual program 

plans. 

 No child abuse has been 

found in any of the caseloads! 

Evidently, parents have been 

provided with enough supports 

and expressive outlets which 

diminish the urge to harm their 

child. 

 The physician is no longer 

forced to make a hasty 

diagnosis. He can delay and 

watch the follow-up process 

until he is more certain about 

the presence or absence of 

developmental disability. 

Although many of the results 

appear to be beyond the 

ordinary, those who 

collaborate on this program do 

not feel they are all that 

extraordinary. One FIND 

counselor, reflecting on the 

program, described its novelty 

this way: 

I don't feel we are 

introducing any new 

interventions. All of these 

specialties have been in the 

region for a long time. . . We 

don't seem to need a large 

bureaucracy to handle the 

coordination; we seem to get 

along very well without it . . . 

I guess you might say that 

the "at risk" baby is really

the center, and we 

manipulate our systems to 

help that little boy or girl to 

develop . . . The only 

difference may be that whatever it is we each are doing, 

we are doing it together . . . 

better than we have ever 

done it before. 

PARENTS ARE 

EDUCATORS, TOO 

Twenty-five years ago, 

children with Down's 

Syndrome were considered by 

many mental retardation 

professionals to be "no 

program kids"—children who 

could not benefit from any 

form of educational instruction. 

They were expected to be jolly 

boys and girls who would not 

live very long; their parents 

were often believed to be 

traumatized, incapable of 

doing anything about their 

child's intellectual 

development. The 

professionals who held these 

beliefs—and a great many of 

them did—considered it 

unthinkable that they should 

share their educational skills in 

such a hopeless cause. That, 

however, was 25 years ago . . . 

Down's Syndrome InfantParent Program, The Center 

on Human Development, 

University of Oregon, Eugene 

Oregon. 

Three years ago, a young 

teacher began traveling from 

500 to 600 miles a week 

throughout western Oregon to 

12 families with newborn 

Down's Syndrome infants. Her 

task: to carry out a special 

BEH-funded research training 

program that, unlike most 

research programs, would take 

place in the home with the 

parents serving as the 

"research assistants." 

The teacher possessed a 

combination of knowledge and 

vivaciousness that made her 

attractive to the families. She 

had a thorough understanding 

of the breakthroughs in early 

childhood education that had 

been taking place at the 

University of Washington's 

Experimental Education Unit; 

the University of Miami's 

Mailman Center for Child 

Development; Teaching 

Research in Monmouth, 

Oregon; Cooperative Educational Service Agency #12 in 

Portage, Wisconsin; and 

Lincoln Center in Chapel Hill, 

North Carolina. It was her goal 

to take the breakthroughs 

achieved at these five centers 

and apply them in the home 

setting. 

It wasn't easy. In the beginning, 

most of the parents had low 

expectations for their mentally 

retarded infants and for what 

they could do to help their 

children learn. The teacher 

was a nice lady, they felt, and 

it was pleasant having her visit, 

but they were skeptical about 

how she could be of any help. 

Three years later, the situation 

had changed dramatically. The 

children were functioning 

close to the developmental 

milestones of normal children; 

and the parents had acquired 

confidence and skill in 

working with handicapped 

boys and girls. More than that: 

the parents possessed 

documentation, written by 

themselves—to prove the 

success of the program. 

The program contained 

some crucial ingredients: 

 Developmental Milestones 

of Normal Children (e.g., 

when they hold their head up, 

roll over, crawl, stand up, walk, 

talk and feed themselves). 

5 
The Family 

The parents were taught to 

recognize these milestones and to 

compare them with the 

developmental accomplishments 

of their handicapped child. The 

primary goal of the parents was to 

help their child function as close to 

the normal milestone as possible: 

The Home as Educational 

Resource Center. The parents 

were encouraged to view the 

everyday events and physical 

effects of the home as a goldmine 

of educational opportunities and 

devices just waiting to be 

discovered. Familiar events could 

be broken down into sequential 

steps for learning, while the 

physical things around the home 

could be fashioned into prosthetic 

aids. Once parents learned to see 

their home as a rich educational 

resource center, they no longer felt 

that their child's education must 

take place in a special building 

stocked with special equipment. 

The Teacher as Responder. As 

soon as parents became alert to 

normal developmental milestones 

and the potential of their home as 

an educational setting, the teacher, 

visiting once a week, was in an 

excellent position to perform a 

single, helpful function. For 

example, when parents expressed 

the wish to help their child learn to 

roll over, the teacher first took into 

consideration the home resources, 

events, materials and people 

involved. She then wrote a stepby-step plan for helping the child 

to roll over. However, the family 

was given the responsibility for 

deciding what had to be taught—

and they did the teaching. 

 Record Keeping. Recording 

data on a child's behavior and 

accomplishments can be a dreary 

affair, but this teacher managed to 

make it interesting. She trained 

parents to use a remarkably simple 

system for recording how an 

infant succeeds in accomplishing a 

single step. The system consists of 

listing, for each day, the numbers 

1 to 10 (the number of attempts to 

teach an infant a single behavioral 

step). The parent places a plus sign 

(for success) or a minus sign (for 

failure) next to each numbered 

attempt, and then totals the 

number of successes for the day. 

Here, for example, is the checklist 

used while Angie was being 

taught to feed herself. The 

checklist is concerned specifically 

with helping Angie learn to reach. 

The teacher and her "research 

assistants" developed their own 

graphs to show how their children 

compared with normal children 

and with Down's Syndrome 

children who had received no 

intervention: 

On May 1, Angie was helped to 

reach for a piece of food 10 times. 

The assistance given could be a 

full hand prompt (bringing the 

hand to the food), a wrist prompt, 

an elbow guide, or no assistance at 

all. Each time Angie reached for 

the food unassisted, one or more 

family members responded 

warmly (planned reinforcements 

of success) and a plus sign was 

placed next to the number of her 

attempt. If she needed assistance, a 

minus sign was placed next to the 

number. The record shows that on 

May 1, Angie reached for the food 

without assistance on the first, 

second, fifth, eighth, ninth and 

tenth tries. The other tries were all 

failures. The number 6 was circled 

to signify the number of successes 

for the day. On May 2, Angie was 

successful seven times; on May 3 

and 4, she scored eight each day; 

and on May 5, she had a perfect 

score. 

The procedure was so simple 

that fathers, brothers, sisters, 

grandparents and even neighbors 

became involved. The net result of 

this widespread involvement was 

that mothers were not left alone 

with such problems as much as 

they had been before. 

Two and one-half years after 

this program began, all 12 of the 

children had reached 

developmental milestones 

remarkably close to those of 

normal children. Without help, it 

would have taken them many 

months longer. For example, a 

normal child holds his or her head 

up at about five months. All 12 of 

these children were doing it before 

five months, while other Down's 

Syndrome children, with no 

intervention, usually do not 

accomplish it until some time in 

the second year. There were many 

similar successes. 

A number of interesting features 

have emerged from this project: 

 Except for demonstrating and 

modeling, the parents do all the 

teaching. 

 The parents make the final 

decision as to what their child 

needs to learn next. 

 As parents begin to feel 

confident about what they are 

doing, visits by the teacher are 

reduced. 

 The measurement of 

accelerating development 

becomes an exciting motivator for 

the parents. 

 There is no need for a carryover from the classroom, since all 

learning takes place within the 

home. 

 Parents in the program experience less grief over having a 

retarded child than do most 

parents in the same situation.
The Family 

Reprinted from Hanson, Marci. 

Teaching Your Down's Syndrome 

Infant: A Guide for Parents. 

Baltimore: University Park Press, 

1978.

As the program continued, 

the original teacher moved on 

to a coordinator's position 

and another teacher picked up 

where she left off. The 

parents continued as they had 

before: watching the normal 

developmental milestones, 

prompting their children, 

reinforcing the steps already 

learned and recording each 

success and failure. 

Today, some of the children 

are ahead of normal 

development in many areas. 

Three-year-old Tony, for 

example, knows his colors, 

counts to seven, does one-toone correspondence, engages 

in rational counting and has 

made initial steps in writing. 

It has all been done through 

regular, playful interactions 

with this family. 

The results—as amazing as 

they seem to be—are being 

received with a tempered 

view. The parents and 

teachers know that there are 

limits to their children's 

development and that when 

they are of school age, the 

normal children will develop 

with greater ease. The goal at 

present is only to help these 

Down's Syndrome children 

get a running start. 

Nevertheless, these children 

have already accomplished 

far more than was thought 

possible 25 years ago. How 

much more they will 

accomplish is still anybody's 

guess, but it would be a 

mistake to sell them, their 

parents or their teachers short. 

IN-HOME CARE 

WHEN IT IS NEEDED 

Parents of older mentally 

retarded persons can tell of 

harrowing experiences in the 

not-too-distant past when 

they requested help from 

health, education and welfare 

professionals. Often, the only 

answer they received was: 

"Send him to an institution." 

One pediatrician in 

Washington State recently 

commented, "When I 

reminisce about how we, the 

professionals, used to deal 

with such families, it strikes 

me that we were utterly 

brilliant at separating mothers 

and fathers from their 

mentally retarded children." 

Such "brilliance" still exists 

today, of course, but it is 

definitely diminishing. 

The Home-Aid Resources 

Program of Washington

Bureau of Developmental 

Disabilities, Olympia, 

Washington. 

When a request for help 

comes from the home of a 

mentally retarded person in 

this state, everyone listens—

or so it seems. The state's 

Bureau of Developmental 

Disabilities (BDD) stands 

ready with an impressive 

array of in-home resources: 

respite care, therapy services, 

program skill development 

and government subsidized 

parent-to-parent contacts. 

Nor is it just the professionals 

who are sensitive to such 

family needs. Last year, the 

state legislators voted to 

increase funding for HomeAid Resources from 

$760,000 to $1,010,000 

without a budget request 

from the agency. The 

University of Washington 

and The American Red Cross 

have both gotten into the act by

7 
The Family 

training home-aid providers. And if 

by chance a parent's request for help 

receives no response, the state has 

an efficient system of red tapecutting advocates who make sure 

the parent's request is heard (see 

"The Troubleshooters" in this 

section). 

All of these efforts to get early and 

efficient help to parents of mentally 

retarded children stem from the 

state's massive effort to preserve 

such families and make them strong. 

The practice of quietly and quickly 

taking retarded children away from 

their families has ceased in 

Washington. BDD is committed to 

this new approach and has put it in 

writing as the agency's single, 

underlying goal: "Home-aid 

services are provided with the 

specific intent of eliminating or 

reducing the need for placing clients 

into residential settings which are 

more restrictive than the community/home environments." (BDD 

Report, February, 1977) 

The efficiency of the Home-Aid 

Resources Program is phenomenal. 

Only 1.3 percent of the funding is 

used in the overhead while 98.7 percent goes directly for in-home services. This is accomplished because 

no intermediate service organization 

is used in the process. The state contracts directly with each person providing the services and mails the 

check to his or her home. 

The program offers a number of 

distinctive services to mentally 

retarded persons and their families. 

Better than 75 percent of the 

home-aid budget is used for this 

crucial program which provides 

regular or emergency in-home 

services. Although this is by far the 

most popular type of service offered, 

out-of home planned and 

emergency services are available as 

well. 

The mechanism a family uses to get respite care is as follows: (1) 

The family makes a request for help to one of BDD's six regional or 

16 satellite offices which are located throughout the state. (2) A 

member of a regional team evaluates the situation and authorizes 

either a number of respite care hours per week or sufficient services 

to offset an emergency. 
The Family 

(3) The region provides a list of 

respite care providers from which 

parents can choose. Parents can, if 

they wish, select a provider from 

their own community; however, in 

such cases, it is recommended that 

the provider complete a thorough, 

competency-based training 

program which is offered free of 

charge. (4) If the provider has not 

done so previously, he or she signs 

a contract for services with the 

state. (5) Each month the parents 

sign the provider's statement of 

hours worked and it is submitted 

to the state for payment. (6) The 

check is mailed to the provider's 

home. The hourly rate of payment 

varies with the intensity of the 

person's handicap and the type of 

service provided. 

 Resource Therapies. Certified 

therapists are contracted for inhome services when no other 

agency in the community can 

provide the required help. 

Therapists are contracted for 

physical therapy, occupational 

therapy, recreational therapy, 

nutrition and health maintenance, 

dental hygiene, medical 

prevention and maintenance, 

behavioral management, intensive 

one-to-one programs, 

communications therapy and other 

therapies. These therapists are 

certified by the state, and payment 

procedures are identical with those 

used for respite care providers. 

 Parent-to-Parent Outreach. In 

some cases, a veteran parent of a 

handicapped child is assigned as a 

peer group counselor to parents 

who have recently had a child 

with the same type of handicap. 

Parents who have been assigned to 

help other parents can receive 

payment for mileage and 

sometimes for the time spent in counseling. Many of these skilled 

persons, however, volunteer their 

services. 

 Transportation Support. Payment for transportation is 

provided for all respite care 

providers and therapists who must 

travel 25 miles or more to provide 

the in-home services. 

 Specialized Equipment. The 

program purchases special 

prosthetic devices and other items 

needed by a handicapped person 

in cases where other community 

agencies are not able to do so. 

The success of the Home-Aid 

Resources Program is greatly 

enhanced by two nongovernmental groups which 

collaborate with the BDD in 

training respite care providers. 

They are the University of 

Washington and the Red Cross. 

The University's College of 

Education has developed a 30-

hour training program that 

includes the Red Cross first aid 

course and sessions on the 

following 10 subjects: 

understanding the 

developmentally disabled person; 

the family situation; home safety; 

medical management; mealtime 

management; communication; 

physical management; behavioral 

management; dressing and toilet 

training; and leisure time activities. 

The state Red Cross chapters 

have provided space and utilities 

for the project training office as 

well as for classrooms throughout 

the state. The national office of the 

Red Cross has contributed 

additional funds and expert advice. 

The sum total of all these efforts 

has been a training program so 

successful that it is now being 

made into a certified, competencybased program similar to the Red 

Cross' programs for swimming, 

lifesaving and first aid. Materials 

and manuals are being developed 

for three training levels: care 

providers, instructors and 

advanced instructors. All training 

must measure up to the Red Cross' 

high standards and providers 

receiving certification must 

demonstrate competency at a 

required level. 

Although the home-aid program 

was developed by the state, its 

shape has been greatly influenced 

by the lobbying efforts of a strong 

consumer advocacy force of 

voluntary associations and the 

aforementioned 

"Troubleshooters." These 

advocates remain on constant alert, 

discovering breakdowns in the 

system and exposing failures 

whenever they are found. Such 

no-nonsense consumer 

monitoring provides a steady balance of power that keeps the 

Home-Aid Resources Program 

developing at optimum efficiency. 

Some interesting findings have 

emerged from the state's efforts to 

aid the families of the mentally 

retarded: 

 Home-aid privileges are seldom abused. For example, the mother of a seven-year-old, 

profoundly handicapped daughter 

had been forced to stay in the 

home almost 24 hours a day. 

When she applied for help, she 

was authorized nine hours per 

week and one weekend per month 

for in-home services. Although she speaks enthusiastically about 

the first time she got away to 

watch one of her sons play soccer, 

she has yet to use her weekend 

privileges because she feels she 

doesn't need them. 

 The training program has become popular. Parents of 

mentally retarded persons and 

other interested citizens are now 

taking the respite care training 

course with the providers. In 

Tacoma, the head of the public 

school nurses is working on a 

program whereby 40 school 

nurses can achieve instructor's 

status; they, in turn, will teach the 

course as an elective in high 

school. 

 Security is knowing there is someone to call. Said one mother: 

"You don't know how good it feels to know that Home-Aid 

Resources are available if I need 

them. I may never have to use 

them again, but knowing they are there is comforting, and it keeps 

me going." 

 The needs of rural families are different. Service delivery records show that rural families do not use 

respite care services as much as do 

urban families. However, they use 

more of the in-home therapies 

than do their city counterparts. 

9
The Family 

The hardships that come with 

having a mentally retarded 

child are greater when you 

are poor, and when you speak 

a foreign language. If this is 

your situation, then you may 

be faced with two options 

typical of 1940: Either you 

send your child away, or you 

keep him at home and receive 

no support. Nineteen-forty 

was not a good year for most 

mentally retarded persons. 

And if you happen to live in 

an economically depressed 

area of the United States, 

today may be not much better. 

 Home-aid service is not 

an isolated effort. The BDD 

regional offices are now 

offering other services in 

addition to home-aid; for 

example—case management, 

individual program planning, 

vocational services and 

recreational services. 

Home-aid is considered the 

"first wave of services" that 

needs to be delivered to 

families with mentally 

retarded children. But it is not 

enough just to deliver them; 

they must be made available 

as early as possible after the 

family's request is heard. This, 

of course, is not an easy task 

for any state to carry out, but 

the State of Washington has 

proven that it can be done 

when a service delivery 

agency, a university, the Red 

Cross and a group of 

consumer monitors tackle the 

problem together. 

TEAMWORK IN THE 

BRONX 

However, some courageous 

people have begun vigorous 

programs with families of 

mentally retarded persons in 

environments where the 

economy is bleak. If this new 

breed of professional and 

paraprofessional are 

successful with their 

imaginative approaches, the 

vintage treatment of 1940 

may soon disappear. 

The South Bronx Community 

Services Team, The Bronx, 

New York. 

The team's tiny office stands 

three blocks away from 

where President Carter and 

Patricia Harris, Director of 

Housing and Urban 

Development (HUD), stood 

October 5, 1977, to survey "a 

wasteland of burned out 

buildings." When you walk 

into the office, you find no 

elegant facilities or equipment, no sophisticated 

mannerisms that can be 

observed in wealthier 

sections of the nation. But 

you quickly learn that the 

members of the South Bronx 

Community Services Team 

(SBCST) have heart. They 

are uncanny at finding 

families with retarded 

persons and getting them the 

crucial services they need. 

SBCST and many other 

small units came into being 

shortly after the State of New 

York began plans for the 

Bronx State School, a large 

multi-bed institution which 

would have become the 

residential catchment net for 

many retarded persons who 

live in this crowded borough 

of 1.4 million human beings. 

But the school was never 

built; the leaders changed 

their minds and decided to 

move in radical
The Family 

new directions. A modified 

building, the Bronx Developmental Center, was constructed with 

apartment-style living quarters, 

where a far smaller number of 

retarded persons live for short, 

intensive training periods. (The date 

of their discharge is planned and 

agreed upon before admission.) 

The remainder of the building 

houses the head offices of the 

Bronx Developmental Services 

(BDS) and facilities for a wide array 

of day programs for 

developmentally disabled children 

and adults. 

The most striking change in plans 

has to do with the staff. Many of the 

professionals and paraprofessionals who would have otherwise been 

putting all their energies into 

keeping a central institutional 

system alive, have now been placed 

under BDS. They have been 

organized into many small service units, scattered throughout the 

borough. Although each unit serves 

a different function, they all follow a 

set of guidelines calling for the comprehensive delivery of services to people in the many neigh- borhoods. When the director of 

BDS was asked how these 

decentralized, highly accessible, 

quick-to-respond units worked, he 

replied, "We don't homogenize 

anything. We give specific 

guidelines to small units and we 

send them into assigned neighbor- hoods to do their thing . . . We have 

some good people out there who 

are able to go into new, uncharted 

territories and do things that have 

never been done before . . . What's 

more, better than half of even our 

middle management live in the area 

where they work." 

The SBCST is one of more than 

20 small units at work in the 

neighborhoods. There are also five 

other community service teams 

serving geographical areas, and still 

other units (e.g., the Apartment 

Living Program, the Travel 

Training Program, the 

Rehabilitation Team, the Early Intervention Program, etc.) move in 

and out of neighborhoods as their 

special services are needed. 

Since the style of life varies in 

each service area of the Bronx, the 

style of the teams varies, too. "There 

is a great difference between the 

South Bronx Team, serving many 

Hispanic residents, and the 

Southeast Team that serves a stable, 

Italian neighborhood," the director 

says. "That's why each team, to be 

helpful and efficient, must be 

allowed to be creative on its own in 

a decentralized atmosphere . . . If 

we tried to develop a homogenized, 

bureaucratic system covering all of 

the Bronx, we would crush to death 

the thriving creativity of the teams." 

Thus, the SBCST carries out its 

own inimitable functions as dictated 

by the needs of its clients. Some 

examples: 

Finding families with retarded 

persons has developed into a fine art 

with many of the teams. The 

workers learn about families while 

walking the streets and while 

conversing with people in the 

neighborhoods. 

Winning trust takes time and 

patience. Many government 

workers who had previously served 

in the area recommended that 

families send their handicapped 

relatives away. Such a thought is abhorrent to the average Hispanic citizen. It only increases families' 

fear, forcing them to overprotect the 

handicapped individual, shielding them closer within the home. It 

takes time for an SBCST worker to 

convince a family that the goal is to 

strengthen and support the mentally retarded person within the home 

setting. 

Keeping track of clients can be an 

extremely difficult business. Since 

families must often abandon buildings due to condemnation, disrepair and fire, it is easy for clients to drop out of sight in the vastness of New 

York City. The workers have 

learned how to find these people by 

taking to the streets. 

In dealing with HUD, the team 

member often speaks as an advocate for the family. Estrelita is not 

violent just because the application 

says she is retarded . . . Maria is not 

a child; she's 45 years old and 

needs her own room . . . Pablo is 

non-ambulatory, so you could be a 

great help to him if you allowed him to move from the fifth floor to the 

first . . . The Supplemental Security Income (SSI) process is one 

through which almost every family 

must be guided step by step. 

Recently, the SBCST took a significant step forward when it arranged 

for social service workers in charge 

of SSI to schedule days at the two team offices. Now, handicapped 

clients or their families are brought 

in on these scheduled days to carry out the SSI process in a familiar 

setting. Team members are 

available as advocates and 

interpreters. 

Getting a handicapped child into 

school can be an uphill battle requiring many steps: (1) Formal application must be made with the Board 

of Education; (2) the family must 

respond to a letter from the board 

which sets an appointment date; (3) 

the child must undergo an 

evaluation; (4) the Board of 

Education's Committee on the 

Handicapped must certify the 

eligibility of the child; (5) the child 

is placed on a waiting list. The 

failure of parents or case managers 

to keep calling results in no school 

for the child. Most children would 

never get into school without 

SBCST members transporting 

them to meetings and monitoring 

the process. This past year, 100 

handicapped children were found 

needing a public school education. 

Today, almost all are attending 

school; those who are not are on the 

waiting list. 

Twelve profoundly handicapped 

adults were found in homes with 

absolutely no training program or support. Many had been overprotected by families who did not 

know what else to do. As a last 

resort, the team developed a day training program for them. SBCST 

staff members and a public school 

teacher on assignment joined together to deliver a six-hours-a-day 

instructional program on grooming, 

hygiene, aid to daily living skills, 

socialization, communication and 

11
The Family 

pre-vocational training. Today, 

there is striking growth and 

development in all 12 adults; 

their lives are happier. The same 

can be said for the families who 

have been freed from a burden 

which they carried in painful 

silence for many years. 

SBCST workers have become 

effective "synthesizers of 

services" on behalf of their 

clients. They identify crucial 

needs and, with a special knack, 

work at getting service agencies 

throughout the borough to 

supply the required services. 

Much help has been given by 

the Einstein College of 

Medicine, The Rose F. 

Kennedy Center for Research in 

Mental Retardation and 

Development, and the 

University Affiliated Facility 

(UAF) at Yeshiva University. 

These organizations have been 

heartwarmingly generous in 

their services to BDS clients. 

A halfway house for clients 

being returned to the 

community from the 

Willowbrook Developmental 

Center is now operational in 

cooperation with the 

Metropolitan Placement Unit, 

the agency in charge of 

transferring such residents to the 

community. 

Two homemakers assigned 

from a commercial homemaker 

agency (which holds the 

contract for services to the city) 

render 80 hours of in-home 

services a week to SBCST 

families. Arrangements were 

made with the corporation to 

screen and provide special 

training in developmental 

disabilities for the two homemakers. Both have been 

accepted as members of the 

team, although their salaries are 

paid by a commercial 

corporation. 

SBCST has worked with the 

Board of Education in starting 

developmental programs. Public 

school teachers are supplied by 

the Board of Education, while 

the team hires and trains the 

teacher aides. 

Couple the above activities 

with all of the usual activities of 

a community service team (e.g., 

vocational training, parent 

counseling, psychological testing, 

recreation and leisure time 
The Family 

activities, etc.)—and remember to 

take into account that all of this is 

accomplished in one of the most 

difficult places in the nation for 

finding and serving retarded citizens—and you have a betterthan-fair idea of what the South 

Bronx team is all about. 

The team's strength and creativity 

lies largely in its ability to decentralize and create services in 

neighborhoods. This channeling of service delivery, plus the team's 

energy and enthusiasm, has 

resulted in over 5000 visits to 

homes this past year and in the 

delivery of approximately 135,000 specific services. The visits and 

services will be at least 25 percent 

higher this year. With results like 

these, it is possible that the Bronx, 

in spite of all of its problems, will provide significant service delivery 

concepts which other, more 

fortunate communities in the nation 

can use to good advantage. 

SALVAGED DESTINIES 

"Every child is dependent upon 

whether other men care for his destiny." These words, used in a brochure of the agency described 

below, are hopeful words. We like 

to think of them as applying to our 

children, to our neighbor's children, 

to all of the children in school 

everywhere. But how rarely are 

they applied to the profoundly 

handicapped children—the 

youngsters who suffer from 

various combinations of mental 

retardation, cerebral palsy, epilepsy, 

autism, blindness and deafness. 

Hopeful words for "hopeless" 

cases? The idea that such children 

do have a destiny, just like the rest 

of us, has often been ignored by 

mankind. 

The Somerset Home School, 

Carmichael, California. The staff members of this training 

home work hard, helping others 

with disintegrating destinies before 

it is too late. First, they focus on the directions of six profoundly 

handicapped children (ages, from 

birth to six years); later, they expand their attention to the 

children's families. Salvaging 

destinies is their business. 

Frail, multi-handicapped children come into a three-acre wonderland 

of sensory stimulation and the reinforcement of healthy responses to it. 

The house is filled with bright 

colors, harmonious music, restful 

waterbeds, voices with loving tones, 

hands that massage, arms that hold 

one close, the stimulating waters of a Jacuzzi whirlpool, the smell of 

baking bread and a noisy canary. Outside is the sun, fresh air, a 

swimming pool, two spirited 

horses, a gentle pony, goats, dogs, cats, a rabbit and a duck. All play an important part in giving 

direction to these children's lives. 

It all began five years ago when 

Tom and Sunny Whalley, the 

parents of a profoundly 

handicapped child and two teenage 

daughters, moved to a larger house. They hired extra staff and opened 

their home as a 24- hour training unit for their son and five other 

profoundly handicapped children in the area. 

The purposes of the unit are simple: to receive profoundly handi- capped infants at Somerset for a 

brief period of time; to perform 

every early childhood intervention 

which is appropriate; to slowly 

phase the child's family into the 

program; and to send a stronger, 

more valued child back to his or 

her home, where a healthier family- child bonding can take place. 

The staff of Somerset is very 

much a family affair: Tom is the 

administrator, Sunny is program 

director, four hand-picked child 

care workers carry out the 

scheduled activities and the 

couple's two teenaged daughters 

assist when they can. Backup support is provided by a registered 

nurse, nutritionist, and case worker 

of the Alta California Regional Center, Sacramento. Also a 

physical therapist in private practice 

works regularly at the home. 

The program is intense and 

extremely humane. It is heavily 

influenced by the concepts of 

Rudolf Steiner, who years ago 

spoke of the value and dignity of 

profoundly handicapped persons. Detailed interventions of 

Neurodevelopmental Training 

(NDT) are carried out faithfully. 

For example, body positioning and 

head control programs continue all 

day. The jerky infantile reflexes— 

so important at birth but an impediment to growth if they fail to 

diminish—are helped to fade, 

while the purposeful use of lips, 

tongue and jaw are stimulated and 

reinforced. Events like mealtimes 

are unhurried, relaxed, enjoyable communions between big people 

and little ones. 

All children have daily periods in the water. Three have been taught to hold their breath and swim 

underwater. The "champ" is four- year-old Susie, who is blind, has 

cerebral palsy and static seizures. 

She can glide underwater for 10 

feet, kicking and paddling from one 

person to another. Such a feat is a 

striking exercise in trust! Additional 

time is spent each day in the Jacuzzi whirlpool, one of many means used to develop muscle tone. 

All efforts are geared to helping 

the children move from weakness 

to strength, from negative 

behaviors to purposeful interactions 

with the world around them. Their 

progress is measured by precision 

charting of behaviors, as well as by monthly videotapes. 

In happy contrast to so many 

institutions, where handicapped 

patients are hidden away from the 

public, the doors at Somerset are 

open to the community. Normal 

children are invited into the home 

and interact with the handicapped 

children by playing with them, 

swimming together, riding ponies and enjoying group picnics. Local musicians are frequent visitors to 

the house, too, for there is a great 

love of music at Somerset. The 

rooms are often filled with 

music—sometimes played by the 

musicians in informal concerts, 

sometimes from Somerset's record 

collection. 

13
The Family 

Photos by Pat Henry 

As parents increase their 

involvement with their own 

handicapped children, their 

attitudes frequently change. 

Many parents become avid 

consumer advocates, joining 

with others to start vital services 

for multi-handicapped persons in 

their own communities. They 

know the time is approaching 

when their child will need some 

of those services as well. 

Last year, the Somerset Home 

School received the Award for 

Excellence from the California 

Commission on Developmental 

Services. Two years ago, the 

agency underwent the California 

Department of Health's ANDI 

(A Normalization and 

Development Instrument) 

Accreditation Survey.1

Surveyors reported that 

Somerset had received one of the 

highest ratings in the state. 

Although the award and the 

accreditation rating are 

appreciated, staff members name 

other high moments which mean 

more to them. One such moment 

came from watching little Marie 

and Jimmy thrive and develop 

after they had been given little 

chance to live; another, from 

seeing parents mobilize their 

own strengths, develop their own 

skills and make the adjustments 

necessary for bringing their child 

back into their own home. 

Soon there will be three home 

schools operating instead of one. 

Other properties are being 

acquired in the region, and two 

young couples are being 

prepared to move into the homes 

and begin programs similar to 

those at Somerset. 

There is hope for the mentally 

retarded when the parents of 

such children—people like the 

Whalleys—refuse to accept what 

others believe about their 

handicapped child. In this case, a 

family has ignored the pessimistic presumption that 

profoundly handicapped children 

must be written off as having no 

future at all. Instead, they began 

work with their son—and with 

others like him—and they have 

documented, in film and written 

records, the rich, step-by-step 

developmental climb each child 

has made. And as these children 

developed, their parents, 

becoming more stalwart and 

caring, found new directions. 

Salvaging destinies is a 

supremely difficult business, but 

it can be done. In fact, it can be 

done by only two people who 

really care. 

1. ANDI combines the key components 

from two national accreditation efforts: 

The Accreditation Council for Services 

for Mentally Retarded and Other 

Developmentally Disabled Persons (AC 

MRDD); and Program Analysis for 

Service Systems. (PASS). 
The Family 

PARENTS TO PARENTS 

Parents of retarded children have 

reported how they suddenly began feeling apart from everyone else 

after learning of their child's 

handicap. They thought of 

themselves as being different and 

alone, almost as if they were one of 

a kind. Neighbors coming to them with information and advice 

seemed to stand at the edge of their 

struggle. Even service providers 

were seen to some extent as 

"outsiders," since they had not gone through the struggle themselves. 

Often, it took another parent of a 

retarded child—one who had 

"been there"—to reach the isolated 

parents and help them understand 

that they and their handicapped 

child were valuable members of 

the human race. 

Pilot Parents, The Greater Omaha 

Association for Retarded Citizens, Omaha, Nebraska. 

In this city, a parent with a developmentally disabled child can 

call for assistance from another 

parent who has successfully adjusted to the same problem. The 

idea that parents of retarded persons are good at helping one another is not new; however, the speed and 

efficiency with which Omaha 

parents help one another is 

remarkably fresh: Put in a request for assistance through Pilot Parents and parent-to-parent contact will be 

made within 24 hours. The Greater 

Omaha Association for Retarded 

Citizens, recognizing the value of on the-spot parent helpfulness, has 

organized some of the 

community's best fathers and 

mothers of handicapped children into a powerful system of peer 

group education and support. Although Pilot Parents are not 

formal counselors, nor case 

managers, they offer peer group interactions based on their own 

experiences and knowledge. They know what it is like to have a 

handicapped child; to receive 

"mixed signals" from relatives, 

friends and neighbors; to have 

some doctors and dentists passively 

or overtly reject their handicapped child. (Pilot Parents keeps a list of 

physicians and dentists who have 

been helpful and understanding, 

and those who have not.) 

One Pilot Parent used this 

analogy to describe what the 

organization does: We are like harbor pilots who 

guide ships out of strange har- bors. The harbor pilot knows 

all the danger spots because he's been there before. He 

helps the captain steer around 

them until the ship is ready to 

move safely on its course. 

Quite often, a Pilot Parent and the 

parent who is aided develop close 

friendships that last long after the 

original period of service. Such 

peer group education seems to be 

powerful because there is a strong 

hunger within us to learn from 

someone involved in the same 

experience. 

Becoming a Pilot Parent has its 

involvements and its time limits. A 

parent begins by making a formal 

application to serve for one year at a time. Although the application 

contains the usual questions, it also 

contains components seeking the 

applicant's own evaluation of his or 

her family's adjustment to a handicapped child. Screening and 

training involve six evening 

sessions on the following subjects: An orientation to the Pilot Parent 

service effort; the family's 

adjustment to a handicapped child; the use of the Program Analysis of Service Systems (PASS) evaluation process, based on the 

principles of normalization; and a 

thorough description of all 

community service agencies for 

developmentally disabled persons in the region. Throughout their one- year tour of service, Pilot Parents 

attend monthly meetings designed 

for information exchange and 

additional educational input. 

When a family calls or is referred 

for peer assistance, a detailed inoffice process goes into effect. 

Information on the family and their needs is gained through a low key 

but structured telephone conversation. A short time later, a 

list of available Pilot Parents is 

consulted and a parent whose child 

has similar disabilities is chosen to 

make contact. Two days later, 

feedback on the visit is phoned into the office. Decisions are made at 

that time about the nature of the on 

going peer assistance process, which is shaped to the needs of the 

situation. 

Many dramatic outcomes have 

resulted from these peer group interactions: 

 An 18-year-old mother was helped to decide to take her 

newborn son home from the 

hospital after the physician had 

given the child a diagnosis of Down's Syndrome and suggested 

the baby be sent directly to the 

institution. (A nurse on the ward 

notified Pilot Parents.) 

 Another mother received much 

needed respite care for her twoyear-old retarded son when the 

Pilot Parent found her emotionally 

exhausted after a painful, threeweek struggle and final separation from her husband. 

 One piloted couple, whose handicapped child died, has applied 

for Pilot Parent training, hoping to be assigned to other parents whose children are not expected to live. 

Many parents are helped to find 

services for their children; and 

when services are not available, the 

Pilot Parents become advocates, 

fighting for what is needed. As this 

happens, a powerful consumer 

advocacy effort remains alive, 

providing a balance of power that is capable of questioning agency 

officials, exposing inefficiency and 

keeping service delivery workers on their toes. 

Today, the roster contains 45 

Pilot Parents of children with a 

wide array of developmental 

disabilities. Sixteen have developed from being receivers of peer 

assistance to being givers of it. 

Twenty-three are on call to speak 

about Pilot Parents in Omaha's 

clubs and classrooms. 

Social functions are held regularly 

so that the parents and their children 

15
The Family 

can get together. Each social function adds its own richness to the 

program. At happy occasions—

like picnics, holiday parties, coffee 

meetings and cocktail parties—

parents caught in grim situations 

are helped to laugh again. Pilot 

Parents often possess a zest for 

living and an ability to share it with 

others. 

As specific needs arise from the 

chemistry of pear group relationships, small groups of Pilot Parents 

take on added projects. Some 

examples: 

 One group found that most of 

the books on mental retardation 

written prior to 1970 were outdated, 

so they wrote a proposal to the 

State DD Council asking for 

money to purchase and catalog 

books for a lending library for 

parents. The proposal was granted 

and the project was carried out. 

 Another group felt the need to 

get the latest information to 

physicians, so they had printed 

attractive file folders, suitable for 

filing in a physician's office, which 

contained information for both the 

physician and his patients. 

Brochures which could be given to 

parents of developmentally 

disabled children were included. 

The Pilot Parents replenish the 

supply as doctors give the materials 

to parents who need them. 

 Attractive file folders similar to 

those given to physicians are 

placed in the many children's wards 

of the city's hospitals. Posters 

explaining the Pilot Parent program 

and the telephone number to call 

are placed on hospital bulletin 

boards. 

The credibility of the 

organization has increased greatly. 

Many physicians and hospital 

personnel advise parents to call for 

peer assistance. The in-home staff 

of the Visiting Nurses Association 

and the counselors of the Eastern 

Nebraska Office of Retardation not 

only provide ample input to the 

training of Pilot Parents, they also 

often work as teams on certain 

cases. Pilot Parents work with 

agencies for persons having 

cerebral palsy, autism and epilepsy, 

too. 

Recently, the Pilot Parents of the 

Greater Omaha area received a 

grant from the Regional Developmental Disabilities Office to send 

teams into Missouri, Kansas, Iowa 

and other parts of Nebraska to help 

10 communities develop their own 

Pilot Parent programs. The Omaha 

group has already received requests 

for such assistance from 22 communities throughout the four-state 

area. Thus far, the group has developed seven new programs—and 

they don't intend to stop until all 22 

are trained and running well. 

PARENTS AS 

PROFESSIONALS 

Services to mentally retarded 

citizens can be endangered at any 

time when decisions about such 

services are removed from clients 

and their families and handed over 

to experts and bureaucrats who are 

far removed from the actual 

services being delivered. Although 

consumer participation can be 

uncomfortable to the entrenched 

bureaucrat, such involvement 

contributes much to an agency's 

ability to meet the real needs of 

handicapped persons and their 

families. 

Recent federal legislation having 

to do with education (The Right to 

Education for All Handicapped 

Act) and habilitation (The 

Developmental Disability Act) 

calls for strong consumer 

participation in the individual planning process. A number of states 

have also adopted consumeroriented legislation. California's 

Lanterman Act, which offers a 

remarkable number of 

opportunities for creative consumer 

input, is a good example. 

The Regional Center of Orange 

County, Orange, California. While agencies throughout the 

nation are training and assigning 

professional program coordinators, 

this center makes it possible for a 

parent to train for the job. This 

parent-as-a-professional 

arrangement is based on a point of 

state law which has frequently been 

ignored: "Nothing shall prevent a 

person with developmental 

disabilities or such person's parent, 

legal guardian or conservator from 

being the program coordinator of 

the person's individual program 

plan (IPP)." [Chapter 1368, The 

Lanterman Act of 1977, The State 

of California]. The law makes the 

process sound easy, but actually it 

is not. The course a parent takes to 

become the program coordinator 

for his or her own child is 

rigorous—so much so, in fact, that 

many do not complete the training 

program. 

Parents begin by making formal 

written application for the position 

of program coordinator for their 

children. After they have been 

accepted, the "trainees" move 

through a three-phase program. 

Phase one is a formal, 10-week 

training program coordinated by 

Rancho Santiago Community College. The course includes three 

hours of lectures per week on such 

topics as the history of the regional 

center system; the program coordinator's relationship with the 

regional center; writing and 

recording skills (e.g., individual 

program plans, data based records, 

quarterly and annual review 

records); the intake process; 

placement practices; orientation to 

all resources and agencies; the law 

(e.g., client's rights, parents' rights, 

guardianship and legal issues); and 

systems for recognizing growth 

and development. A final 

examination is given at the end of 

the course. 

Phase Two is a one-year apprenticeship called "conjoint programming." In this phase, the parent and 

a professional work together, 

applying the information learned in 

Phase One. As a team, they carry 

out all the details of programming 

for the parent's child. 

If all goes well during the 

apprentice year, the parent 

moves into the Solo Phase. In 

this phase, the parent functions 

as a member of the regional
The Family 

center team; conducts the 

annual review as team leader 

on his or her own child; 

synthesizes all team efforts 

and writes the IPP; writes the 

quarterly and annual reports; 

arranges for the purchase of 

service contracts and seeks 

final approval from the 

center's unit manager; and 

receives the customary 

administrative, professional 

and clerical support accorded 

any program coordinator. 

Although the program has 

been operating for a little less 

than two years, the following 

results have been produced: 

To date, 75 parents have 

completed Phase One, while 

35 are in Phase Two 

apprenticeships and 15 are 

Solo Phase program 

coordinators. 

Over half are parents of 

adults. "This was most 

surprising," a regional center 

supervisor said, "but now we 

understand why it happened. 

These parents lived through a 

period when their children 

had no programs at all, and 

nothing could have been done 

about it. Now, the chance to 

coordinate their own adult 

child's program has proven to 

be an attractive option for 

them." 

Better than half of the 

parents have children in an 

institution. In California, 

each regional center is 

responsible for the 

development of the IPP and 

program coordination for 

developmentally disabled 

persons in institutions as well. 

Consequently, parents of 

institutionalized persons have 

a chance, for the first time, to 

assist with their child's 

program. 

Many of the parents' case 

presentations, individual 

program plans and written 

reports are extremely 

professional. This became 

understandable when it 

dawned on the staff and 

parents that the average program coordinator has a case 

load of 60, while a parentcoordinator can work long 

hours on a single case. 

In Phase Two, both the 

parent and the professional 

invest an average of . 17
The Family 

from 10 to 15 hours per month work- ing together on a single program. By the sixth month, the time spent 

together lessens. This shift is seen as 

evidence of growth in the parent. 

Many "tough" parents who have 

repeatedly exhibited anger for the 

delivery system have applied for 

training as parent-coordinators. 

The formal education and close 

relationship with a professional 

have been invaluable in 

understanding the other person's 

point of view. Many such parents 

are on the road toward becoming 

efficient, responsible coordinators 

of their children's programs. 

Since parents of developmentally disabled persons, like all of us, 

have varying degrees of talent and 

energy, it is clear that all parents 

will not and should not undertake 

such a program. Nevertheless, in 

creating the parent-coordinator 

program, the Regional Center of 

Orange County has come up with 

one more consumer activity which 

can be added to a long list of 

parent involvement choices 

emerging throughout the nation. 

With each new consumer effort, 

there is less chance that decisions 

affecting the future of mentally 

retarded persons will be made in 

remote agency offices by people 

who will never know their "cases" 

personally. Instead, relevant decisions 

will be made out in the open—by 

parents who have demonstrated their 

competency to decide. 

TROUBLESHOOTING IN 

WASHINGTON STATE 

In the views of many advocates, 

no agency can be presumed to be 

honest or efficient in their delivery 

of services to families with 

mentally retarded children. For 

example, an agency may describe 

in glowing terms what is being 

accomplished for mentally 

retarded persons, while the 

families trying to get the services 

suffer frustration from what they 

didn't get and disappointment with what they did get. Or the agency 

may say sanctimoniously how 

badly it needs monitoring by the 

consumers, but when that 

monitoring is forthcoming, the 

agency finds 1001 ways to quiet 

the consumers and put them down. 

Many service delivery experts 

have come to see that an agency is 

kept honest and efficient when a 

balance of power with an ability to 

expose unresponsiveness is provided by coalitions of consumers 

who do not give in easily. 

The Troubleshooters, Seattle, 

Washington. These advocates know all about the 

confusing application forms, the 

slow-moving machinery of bureaus 

and the picayune reasons for denial 

of services which parents of retarded 

children often suffer in their attempts 

to get help. They not only know 

about it, they do something about it. 

This family advocacy agency 

swings into action with the dialing 

of a telephone, ready to listen to a parent's problem; to help them 

move, step by step, through a 

procedural maze; and, when 

necessary, to confront and expose 

an agency's derelict unresponsiveness to a family's needs. 

The advocates are called Troubleshooters and there are 40 of them 

operating out of 24 offices 

throughout the state. 

The Troubleshooters had a 

modest beginning. In 1972, two 

parents made an agreement with 

Seattle's Northwest center for the 

Retarded—the agency where their 

adult children attended—to 

develop a manual on "how to get 

benefits for disabled adults." The 

office management was funded by 

a small grant from the regional 

HEW Developmental Disabilities 

Office, and the two parents agreed 

to volunteer their services. 

Their plan was simple. First, 

they would attempt to move 

through some of the servicegetting processes as parents of 

adult mentally retarded children. 

Then, they planned to write out 

guidelines and steps that other 

parents could follow. However, 

after one month of attempting to 

move through the system, they 

were overwhelmed by the 

obstacles and degradation they 

encountered. "We found we were 

caught up in systems never 

designed for us and they simply 

didn't work," says one of the 

parents. "So we decided to help 

families individually and to work 

on the systems at the same time." 

During the next three years, a 

system for helping individual 

families who called on a special 

Troubleshooters telephone line was developed by the two parents and 

their office manager. At the same 

time, they joined with the state 

Developmental Disabilities 

Planning Council in building a 

variety of coalitions which began to provoke changes in all of the public assistance delivery systems for 

developmentally disabled persons. In 1976, the Troubleshooters 

became an independent family 

advocacy agency, and the 

governor called for the setting up 

of four Troubleshooters offices in 

other areas of the state. The new 

Troubleshooters were salaried by 

the Comprehensive Employment 

and Training Act (CETA) and 

their training was supplied free of 

charge by the veteran Troubleshooters of Seattle. 

In 1977, the governor ordered 

that the Troubleshooters be "the 

designated Protection and 

Advocacy Agency throughout the 

state for all persons with 

developmental disabilities and 

other handicaps." Today, the 

agencies are powered by $40,000 

Protection and Advocacy funds, 

$440,000 CETA funding, 

$160,000 worth of Vista Volunteer 

service and $400,000 of "in kind" 

and other volunteer services from 

45 agencies who have established 

formal and informal alliances. 

All those preparing for Troubleshooter positions undergo a 

rigorous and relevant 30-day 

training experience. Throughout 

the month, the trainee lives with a 

handicapped person in order to 

gain first-hand experience with 

such an individual and 
The Family with the problems he or she must 

face. The training program covers: 

the civil and human rights of handicapped persons; the unique needs of 

the person and his or her own 

family; the benefits and services 

available; and exhaustive skill 

training in how to secure services 

from every agency that is charged 

with the provision of such services. 

The program also includes sessions 

on the quick recognition of the 

various application forms and the 

rules that govern their completion. 

As part of their training, prospective 

Troubleshooters fill out the forms 

themselves. Monthly in- service 

training is conducted, providing 

added vitality to the agencies. 

Troubleshooter offices often 

resemble the telephone "boiler 

room" in a political campaign, with 

two or three Troubleshooters manning phones which are in constant 

use. On a calm day in Seattle, a 

Troubleshooter will log about 20 

calls. On busy days, there can be 

over 35 calls per person, with a grand total for the day exceeding 

100. Thirty percent of the 

conversations have to do with 

carefully listening to problems and 

slowly going over a sequence of 

steps that need to be carried out by a 

family. Seventy percent of the calls 

deal with the office's efforts to 

follow applications, ask questions of 

agency officials and call attention to 

breakdowns in service systems. An 

active card file is kept on every 

family or client involved in a 

problem-solving situation with the 

Troubleshooters. The goal is to help 

the parent or client grow into "self 

advocacy." Said one Troubleshooter: "If we just solved the 

family's problems when they called, 

we would weaken them. Instead, 

we go over the steps of a situation, 

one by one, and we help them know 

what they need to do next. We even 

send texts of letters or checklists in 

the mail which they can use." 

Nevertheless, when it becomes 

evident that parents have done 

everything they can do, and the 

agency is still unresponsive, the 

Troubleshooters have strategies they 

take on behalf of the families. ("We 

even have a habit of calling the top 

official in an agency when we have 

to.") 

To keep the public informed—

and motivated—the Troubleshooters publish "The Inside Scoop," a 

monthly newsletter with a 

circulation of 12,000 which is sent 

through the mailing lists of many 

voluntary and professional agencies. 

The newsletter is playfully but 

seriously written, with an Ann 

Landers flair. It contains some of the 

previous month's actual pleas for 

help (the requester's identity is kept 

anonymous); each plea is answered 

with either specific advice or a 

review of how the problem was solved. The newsletter has also published "affirmative action statements" by agencies, specimen texts 

of letters to bureaus and simple 

explanations of current legislation, 

showing the weaknesses and 

strengths from the family's 

viewpoint. "The Inside Scoop" has 

proven to be interesting and helpful 

reading for parents, professionals, 

citizens and govern-ment officials 

throughout the state. 

The activism of the Troubleshooters has generated a number of 

remarkable ideas, schemes and 

materials, many of which have 

found their way into other comm.-

unity operations. Some examples: 

 The no parent pay policy. The 

Troubleshooters believe that assistance to families of developmentally 

disabled persons should be without 

charge—not even on a sliding scale. 

("In our communities, fire assistance, 

police assistance, public school education, emergency medical assistance and many other services are 

already covered in our taxes. The 

parents of handicapped children are involved in a painful emergency 

they didn't ask for which should be 

covered in taxes, too. If they have to 

pay for these services, it amounts to 

double taxation.") 

 Medical Advocacy. The Troubleshooters were instrumental in setting 

up a program to train and match 

medical, premedical and other preservice trainees with developmentally disabled persons who need 

advocacy during a period when they 

require health services. The organization is now independent and is 

based in one of Seattle's hospitals. 

 Community College Courses. The enthusiasm of the Troubleshooters has been contagious. The 

curriculum of their rich, 

informational training program has 

been revised for use with parents 

and interested citizens who wish to 

take the course at many community 

colleges in the state. 

 Group Home Schemes. The 

Troubleshooters have set up, and 

closely monitor, "instant group homes" and "cooperative rentals" 

for developmentally disabled 

persons on the basis of SSI 

payments and other support 

payments from state funds, without 

the need for any residential care 

agency intervention. 

 Creative Tension. After gaining an understanding of both the Troubleshooters and the aforementioned 

Washington State Home-Aid 

Resources Program, it is possible to 

sense a creative tension between the 

two groups. The two agencies 

might not admit that they are good 

for each other, but they are. The state 

agency has power but so does the 

family advocacy agency, and it is 

this balance of power that has 

enabled the State of Washington to 

create services that go beyond the 

ordinary. 

While one agency builds a 

program system and publicizes it 

from the government's point of view, 

the other watches its delivery to 

families and criticizes it from the 

consumer's perspective. The 

Troubleshooters know that if a 

service system, no matter how 

elaborate or well publicized it may 

be, does not reach and help the 

families for which it was intended, 

then something is wrong with that 

system. And the most helpful thing they can do is to publicly expose it at the point of breakdown. The 

Troubleshooters' unofficial motto 

puts it this way: God helps those 

who help themselves. But the 

systems help those who know the 

systems. 

19
Public School Education 
Public School Education 

A PUBLIC SCHOOL 

EDUCATION THAT BEGINS 

AT BIRTH 

When children are developing normally, everyone remains calm. The 

parents surround them with a family 

structure, the physician checks them 

periodically and in due course the 

educators provide them with a 

public school education. Everyone 

watches quietly as the children 

develop on their own. But there is a 

growing urge within everyone to intervene dramatically when a child 

shows signs of retardation. Parents 

become concerned and look 

everywhere for help. Physicians do 

not say, "Bring him back in three 

months" or "Maybe she'll grow out 

of it"; instead, they consult other 

professionals and make the child the 

object of day-to-day observations. 

Now that the public school education of retarded children is a fact of 

life, "everyone" includes teachers 

and school administrators, too. And, 

like so many professionals and parents, they have begun to realize that 

a handicapped child's education 

must begin early if it is to be 

effective. True, Public Law 94-142 

calls for the education of the 

handicapped to begin at age three, 

but some educators are not even 

satisfied with that. They want to 

break through all school age 

admission rules, to work shoulder to 

shoulder with other pediatric professionals and to deliver training programs as close to birth as possible. 

When a child is found to be retarded, 

there is a growing urge in everyone 

to intervene dramatically. . . and to 

do it early. 

Spring Harbor Elementary School, Madison, Wisconsin. 

In this community, any child from 

birth to five years who is 

handicapped or "at risk" can 

become a public school student 

immediately. There is no 

uncertainty about acceptance, nor is 

there any waiting until normal 

school age. A school district 

supervisor, for example, explained 

how little Amy was "enrolled" 25 

minutes after she was born. As soon 

as Amy's pediatrician knew that she 

was handicapped he informed the 

father in the waiting room and 

explained how the local public 

schools had programs to help such 

children. Wasting no time, the father 

went to a pay telephone and called 

to get Amy "in school." This is only 

one of many incidents which 

demonstrate Madison Metropolitan 

School District's adamant 

determination to maintain "zero 

exclusion for handicapped 

children." 

Spring Harbor School is one of 

“three elementary schools, strategically located throughout the city, 

which provides early childhood 

educational instruction. There is no 

attempt, in any of the three schools, 

to conduct the programs "off to the 

side." Instead, the students, teachers 

and parents are accepted as an integral part of the schools' programs. 

For younger infants, the school 

sends a special education teacher—

called a parent advisor—into the 

home at regular intervals. There, 

parents are helped to develop 

training programs in the family 

setting. As the children gain in weight and strength, they are placed 

in one of five programs at the school. 

Once a child is in a school program, 

the parent advisor visits less in the 

home, but she never completely 

stops as long as the child is in the 

program. 

At Spring Harbor, the 

classrooms—located in the middle 

of the building have brightly colored 

walls and rugs and an abundance of 

toys and play equipment. In this 

attractive setting, professionals, 

parents and elementary school 

students help 35 children overcome 

or compensate for such problems as 

hydrocephaly, Down's Syndrome, 

cerebral palsy, spina bifida, and the 

absence of speech, sight, hearing, 

arms or legs. Thirty percent of the 

children are severely and 

profoundly handicapped. 

The activities in this school are 

constantly being evaluated and 

changed. One teacher gave this 

explanation: 

If you came back in a year, you'd see a different program. It has to 

be this way. We have only five 

precious years with a 

handicapped child before he's 

school age. We must not waste 

this time. All of us try to develop 

specific instructional activities that 

will enable each child to make 

kindergarten. That's a big jump 

for these kids, but some of them 

make it. For those who don't 

make it, we can document that 

they are many steps beyond 

where they would have been 

without this program. 

The following are some of the 

components that are included in the 

early childhood program at this 

time: 

 Normal Preschoolers Integrated. Ten normal preschool children are 

distributed throughout the five 

groups as regular members of the 

program. They receive 

individualized training like their 

handicapped classmates, but they 

also serve as peer models. Many 

parents of normal children in the 

community have requested this type 

of exposure for their children. Some 

want it simply for the preschool 

experience, while others want their 

children to develop skills in understanding and accepting handicapped 

persons. There is never a waiting list 

for handicapped students, but there 

is a long one for normal children. 

 Regular Students Involved. There is a constant search for 

creative interactions that can take 

place between the handicapped 

children and the regular 

elementary students. Some 

regular students come to the 

21
Public School Education 

early childhood classes on special 

assignments to work as helpers and 

tutors. (Specific components on the individualized instruction plans are so exact that a regular student can 

be trained to carry them out.) Other 

students make casual visits. On 

special occasions, a regular class is 

invited to attend a party in the early 

childhood classrooms. At such 

times, the regular students are 

encouraged to be "receivers," since 

this helps the handicapped children 

understand that they can be 

"givers," too. One more attempt to 

ready these children for the "big 

step" into kindergarten comes 

when advanced handicapped 

students are scheduled into regular classes for specific periods such as 

socialization and music times. 

 Staff Flexibility. The only full- time persons in the early childhood 

groups are the teacher and the 

teacher's aides. Regular students, 

speech and language technicians, 

an occupational therapist, in-home 

parent advisors and parents come 

for special involvements with the 

children and then leave. Other 

technicians from the medical, 

psychological and social disciplines 

are available as needed. 

 Options for Parents. Since par- ents possess a wide range of talents 

and deficiencies, a number of 

options are available, enabling 

parents to choose how they would 

like to be involved. A university based advisor has identified 27 

possible options. For example: 

carrying out specific data based 

instructional programs; observing 

sessions; conducting tours of the 

program; scheduling and participating in coffee meetings with 

other parents; sharing information with new parents whose child has a 

similar handicap; maintaining a 

daily communications notebook 

that goes back and forth with the 

child; serving on the school's 

regular and special advisory 

councils; helping with field trips; 

and teaming with a teacher for 

speaking engagements. 

The parent is given the option to 

not be involved. In some circumstances this is the most appropriate 

choice, but it seldom happens since parents usually want to do things 

they are capable of doing. 

 Individualized Programming in 

the Group. The early childhood teams, being responsible for developing precise individual 

educational plans, demonstrate 

remarkable competency in 

analyzing behavior, developing 

sequential steps in a. task, cueing, 

measuring change and reinforcing 

positive achievements. 

The emphasis is very much on 

the practical, on teaching the handi- capped children to be independent and self-sufficient. For example, 

they are taught to identify and 

utilize the many components of 

preparing snack time, rather than 

being given some artificial task like 

putting squares and triangles in their proper holes on a board. They 

are encouraged to complete tasks 

for themselves, without help from 

the staff, even if this means extra 

time and difficulty. And although 

the tasks are individualized, there 

are no one-to-one programs in the class—for the simple reason that 

there are no one-to-one programs 

in kindergarten, the next step for 

many of the children. 

One result of this emphasis on the practical is that the children 

become "hardened" to their 

environment. They learn to 

overcome natural obstacles. A case 

in point: There are steps leading up 

to the classroom and the children 

learn to scoot, crawl or work 

themselves up to the top any way they can. Because the staff 

members regard this toughening 

process as highly valuable, they 

view with misgivings the fact that 

next year the classes must move to 

a "barrier free" school in 

accordance with Section 504 of the 

Federal Rehabilitation Act. Says 

one staff member: "We need those 

stairs for our kids. We'll find some 

stairs somewhere in the new 

school." 

 The Parent Advisor. In many schools, the teacher who is the parent advisor would be called the "inhome trainer." At Spring Harbor, 

such a title presumes too much. 

The parent advisor explained: When I go into someone else's 

home, I am a guest. I have no 

right to push or hard sell any- thing in somebody else's home. 

And when we meet over a cup 

of coffee at the kitchen table, I 

stay open and alert for all kinds 

of things they want to do for 

their child. 

The parent advisor is skilled in a 

wide range of educational and 

therapeutic interventions, so she 

listens and waits for the parents to 

tell her what skills they want to develop with their child. Although she refuses to be called a trainer, 

she ends up doing more training than many who carry the title. As mentioned earlier, the Early 

Childhood Program must move 

from Spring Harbor School at the 

end of the 1977-78 school year to a 

"barrier free" school. It is a move 

that no one is looking forward to— neither teachers, parents nor regular students. The principal explained 

why: 

The Early Childhood Program 

came to us last September after a 

brief stay in temporary quarters. 

As soon as they arrived at Spring Harbor, they gave our staff a lift. 

We found them to be a super group of professionals, and all of 

us have grown tremendously 

because of their presence. Even I as the administrator have been 

richly influenced as well. 

Although the early childhood staff have won the respect of those 

around them, they continue to be a 

driven group, searching for better 

interventions than those they now 

possess. Some even have the 

irrational belief that "we have failed 

every time a child doesn't make 

kindergarten." They know, of 

course, that many will not make it, 

but they continue to intervene at 

every point where a young child's 

intricately coded mechanism, for 

early rapid growth seems to be 

tripping over itself. For them, the 

time is short and kindergarten age 

comes all too soon. 
Public School Education 

THE SCHOOL THAT HELD 

ITS OWN CHILDFIND 

When Congress passed the Right 

to Education for All Handicapped 

Act, it was like throwing a very large rock in a pond. First the "splash" of the nearly unanimous vote (House of Representatives, 

404 to 7; Senate, 87 to 7), then the 

"ripples," "which traveled to every 

public school district in the nation. 

But the new law called for 

changes, and changes in 

educational systems—or any 

system, for that matter—are often 

difficult to bring about. It is not just that people are forced to give up 

familiar practices; sometimes, new, 

completely unfamiliar practices are 

thrust upon them. When this 

happens, people are faced with a 

dual problem: first, they must 

overcome the natural resistance to 

giving up cherished ways; second, 

they must find solutions where 

there are no precedents. 

One of the major changes forced 

upon school districts by P.L. 94-

142 has to do with the locating of 

handicapped children. In the past, 

the schools simply waited for the 

children to arrive at the age of five or six. Now, schools must locate 

the handicapped children. More 

than that: Once the children are 

found, there must be a worthwhile 

educational program to help them. Many school districts, by being 

ready for the changes, have been 

able to minimize the problems. 

One good example can be found in 

Bennington, Vermont. 

Molly Stark Elementary School, Bennington, Vermont. 

This small town school took P.L. 

94-142 seriously. It conducted its 

own "childfind" and came up with 

seven severely and profoundly handicapped children (ages 7 to 10) 

in need of a public school 

education. The school already had classes for "trainable" and 

"educable" mentally retarded 

children, but not liking these labels, 

the classes were designated "Level 

I" and "Level II." A teacher was 

recruited from a local college and 

two teacher's aides were hired from 

the community. Staff members of 

the University of Vermont's 

Special Education Department 

were brought in as consultants. 

And seven children—who had 

never attended school before—

began their education in September 

with the normal children in the 

neighborhood. Their class was 

called simply "The Early Learning 

Group." (The terms "severe" and 

"profound" were not liked either.) 

When school opened in the fall, 

the seven came to school for the 

first time in their lives. Some could 

not walk; others had a faraway look in their eyes as if they were living 

in another world. One child rocked, 

slapped himself and made incoherent noises. The principal had this to say about those first days: How did we react at first? It was 

'wow' for all of us. When we 

first saw them in the lunchroom, 

they seemed so frail. Some 

teachers were afraid they'd get 

run over. Then, our custodian 

swung into action. He built a 

special platform so that some of 

them could sit at a lunch table 

like the rest. Other students 

began to help. Now, some 

regular students are assigned to 

work with them at mealtime. 

By spring, the members of the 

class had developed such good eating skills and control that visitors 

could no longer identify them by 

their looks or behavior. One teacher, 

responding to such a lunchroom 

search, pointed them out and 

remarked humorously, "Now I 

suppose we ought to paint them 

green so they'll be easier to find." 

One father told how he and his 

family had been forced to consider 

institutionalizing their ten-year-old 

daughter. He spoke of bad balance, 

three broken legs, aimless movements, periods of screaming and an unresponsiveness to everyone. "We could have done cartwheels 

and shot off firecrackers and 

Margie wouldn't have responded to 

us," he said. 

This family had been giving constant care to Margie, around-theclock with no vacation for the past ten years. The father was frank: 

"Let's face it. We let her come to 

school because my wife needed a 

break. This school was our respite 

care." 

In school, Margie became 

involved in 12 precise instructional 

programs. They focused on: 

attending, undressing skills (dressing skills come later), 

scooping with a spoon, drinking 

from a cup, washing hands in cold water (hot and cold water come 

later, too), toileting, object 

recognition, physical obstacles, 

natural gestures (gross hand sign 

language), grasping and releasing, toothbrushing and interacting with 

people. 

Such skills are, of course, taken 

for granted in the development of a normal child. In Margie's case, 

however, the skills were dealt with 

one by one. Every positive 

response was recorded, along with 

data on whether Margie 

accomplished the task on her own, 

on cue, or with physical help. 

Today, Margie's educational program is working. Her father spoke 

of how his daughter has changed: She can take her clothes off. 

Before, she couldn't relate at all, 

but now she's bubbly. She 

wants to kiss everyone. She's 

discovered television. She 

started with "Sesame Street" 

because, I think she identified 

with the children. Then she 

moved to game shows and now 

it's cartoons. She's able to signal 

when she wants the channel 

switched. Her communication 

has enlarged. We understand 

her repertoire and now she 

knows we understand. She's 

even competitive with her 

brothers and sisters . . . The 

school has been the greatest 

help for my wife. It's made our 

family strong. And when our 

family is strong, we can do 

more for Margie than the 

government or anybody else.

23 
Public School Education 

Helping handicapped children can 

be contagious. People volunteer their services to the Molly Stark 

Elementary School simply to help 

the seven children—and the others 

who will come after them—

achieve a better life. For example: 

When a mother saw 

achievements in her daughter, she 

became involved to the extent that 

she now works as an assistant to 

the regular PE teacher with the 

Early Learning Group. Together, 

the professional and the mother 

carry out PE activities that are both 

precise and measurable. 

A regular student has been 

granted permission to work with 

her handicapped sister in the 

lunchroom. The student and her 

teacher now have lively 

conversations about what it means 

to have a handicapped sister. The handicapped girl responds strongly to her sister and their interaction 

carries over into the home. 

Jonathan, a regular student, goes 

to the Early Learning Group every 

morning at eleven. He helps the 

class go to the lunchroom, get their trays, and he assists with their 

mealtime skills. The job has made 

Jonathan feel like a hero and his 

interest in school and in his own 

studies has improved. 

The school custodian has 

become extremely interested in the 

children, helping them in the halls 

and lunchroom, and building 

special equipment the children 

needed. He says, “This is the best 

thing that has ever happened to this 

school. The regular children learn 

from the handicapped ones, and the handicapped children learn from 

the regular ones. Never before has 

this school been so rich and alive." 

Members of the University of 

Vermont's Special Education 

Department come regularly to Molly Stark School to provide inservice training to regular and special teachers as well as to 

volunteers who are involved in the 

Early Learning Group. For example, the volunteer mother and the 

regular physical education teacher 

take one of the classes, while the 

head teacher—who is working on 

her master's degree—takes another. 

The University's professors in the 

field of the severely and profoundly handicapped are vigorously 

committed to small teaching arrangements throughout the state. More than half of the preparation 

for teaching such handicapped children is connected with real 

classroom settings throughout 

Vermont. 

In addition to the usual mainstreaming of lunchroom, halls and 

assemblies, the following activities are taking place: 

 Some children from the Early Learning Group are assigned to the kindergarten during social 

language stimulation and peer interaction periods. 

 The teacher of the Early Learning Group participates in the 

"teacher switch" and exchanges teaching duties with the teacher of a 

different class. Before the switch 

takes place, the two teachers meet 

and help each other prepare; after the exchange, they meet and share 

experiences. 

 The special education teacher 

now serves on the Inter-school 

Support Team, a small select group 

of teachers who help other teachers 

cope with problem children. 

Teaching handicapped children 

at Molly Stark—and keeping them 

home and out of institutions—

makes financial sense. It has been 

estimated that it costs 

approximately $20,000 a year to institutionalize a child in Vermont; 

the people in Bennington serve the 

child for much less. However, the 

principal of the school makes it 

clear that money is not the biggest 

issue: 

The real key is an equal educational opportunity. I know it costs 

more than the regular children, and I know we don't have tons of 

money. But educators in thin 

district intend to respond to every child's educational needs . . . 

Furthermore, we need to begin 

working with handicapped kids from birth. Everyone, from the 

superintendent on down, wants 

to meet the learning needs of 

these boys and girls. 

THE EXODUS FROM 

BADGER TO GLENDALE 

SCHOOLS 

For more years than we can 

remember, the education of 

mentally retarded persons has taken place in settings located apart from the regular schools. Segregated 

settings were established because 

most educators felt the regular 

schools were not suitable 

environments for mentally retarded 

persons. But times change, and 

regular schools are now inviting handicapped persons to attend 

classes in the same buildings as regular students. 

After all these years of 

segregation, however, there is 

still a tendency to be fearful of 

such arrangements. It is not easy to leave a secure, familiar
Public School Education 

area and move into strange territory. Nor is it easy to adjust to strangers who move in as well. Such is the 

two-fold predicament that many 

school districts will face in the near 

future. How will students in 

segregated special education 

buildings eventually be merged with those in regular school buildings? 

Badger School and Glendale Elementary School, Madison Wisconsin. 

One of the nation's most famous 

special education schools no longer 

exists. It was abandoned and left to 

slip into oblivion in the summer of 

1977 when 32 severely and profoundly multihandicapped children, 

their teachers, therapists and equipment moved from Badger School to 

Glendale Elementary School. While 

the transfer was taking place, those 

who had become attached to Badger School shook their heads and wondered why it had to happen. After all, 

some of the most enlightened attitudes in regard to handicapped 

students—and some of the richest 

technologies for helping them—

were shaped within Badger's halls, 

while educators from around the 

world came to observe and learn. 

Now some people were being forced to abandon what had become their 

Mecca. 

Badger's history was short but rich. 

It opened in the fall of 1970 as the 

Madison Metropolitan Public School 

District's special education school. 

By 1973, there were 140 students 

with a wide range of handicapping 

conditions who traveled to its classes 

from all over the city. When the 

school developed MAZE (Madison's Alternative for Zero Exclusion) 

one year later, the Badger School 

became the center of a vigorous 

effort to deny no child a public school 

education because of his or her 

handicap. Beginning in 1974, the first wave 

of handicapped students moved to 

regular schools when "trainable" students were transferred to elementary, 

middle and high schools throughout 

the district: In the spring of 1977, the 

MAZE program was terminated; 

Madison had made its point that no 

child, regardless of handicap, would 

be excluded from a public school. 

Only 46 multihandicapped students 

were left in the building. Many 

thought that these students should 

stay at Badger and that the building 

should remain open as a tribute to its 

accomplishments. But the deification 

of buildings and the needs of children 

are separate things, and so the 

administration ruled that Badger's 

usefulness had come to an end. 

The sequence of events which 

took place during the exodus from 

Badger is every bit as valuable to the 

field of mental retardation as the 

school's accomplishments when it 

was thriving. The value lies in the 

smoothness with which school officials of both Badger and Glendale 

identified and dealt with the barriers 

hindering the transfer. The following 

chronological account may be of 

some help to special schools who are 

considering a transfer to regular 

schools in the future. 

December, 1976: The principals met with the superintendent. Dr. Tim 

Crowner of Badger and Dr. Jerry 

Johnson of Glendale were called in 

to the superintendent's office to consider bringing the two student bodies 

together. It was suggested that 32 

elementary age students could be 

transferred to Glendale, while 14 

older students could go to secondary 

schools. Dr. Johnson's response was 

typical. What would happen to his 

program? Glendale already had an 

excellent program which mainstreamed hearing-impaired children 

in regular classes. Would he have to 

give it up? Also, he knew nothing 

about the children at Badger, so he 

asked for time to "process" the idea. 

The Holiday Season 1976-77: The 

principals began working closely 

together. Shortly after their meeting with the superintendent, Dr. Crowner 

and Dr. Johnson met and attempted 

to gain an overview of all that was 

involved in such a move. Dr. 

Johnson wrote a series of seven 

alternative floor plans for Glendale 

which might accommodate both 

student bodies. (In a month, the seven 

would be narrowed to three.) 

Immediately after the first of the year, 

Dr. Johnson made his first tour of 

Badger School. 

Early January, 1977: The proposed merger was discussed at both 

schools. Each principal passed the news to their faculties and parents. 

At Glendale, Dr. Johnson first discussed the move with his cabinet of 

teacher and parent representatives. 

Three days later, it was presented to the entire staff, with more parents in attendance. This group voiced three 

major concerns: What would it be 

like to have more students in the 

school? Who would have to move to 

different classrooms? How would 

the presence of multihandicapped 

children affect the school? 

At Badger, the greatest fears of the 

staff and parents had to do with the 

children. These handicapped boys 

and girls already had more than their 

share of rejection from people in the 

community. Would they receive 

even more from the nonhandicapped schoolmates? How 

could all of their needs for special 

personnel and equipment be met in a 

regular school? 

January 12: The Glendale steering committee visited Badger. A small 

group of responsible teachers and 

parents visited Badger School for the 

first time. On the way back to Glendale, there was silence in the car. 

Then a teacher asked the question 

that everyone was thinking: "Do you 

mean we are going to mainstream 

those kids?" Heretofore, the Glendale 

teachers and parents had not been 

aware of the severity of handicaps in 

the Badger children. Later, this same 

group began to think favorably about 

the merger; they could see that it 

would be a healthy challenge. 

January 26: The administration 

gave the "go ahead." Everyone had been invited to express his or her 

fears about the merger and to consider its feasibility. By the latter days 

of January, many persons started to 

think the merger could work. Since 

time was short, and there was much 

work to do, the superintendent 

announced the move. 

25
Public School Education 

At this time, Dr. Crowner 

announced his future move to 

another assignment. Such a shift is 

customary when two schools merge, 

and he delegated Badger's 

leadership for the transfer to his 

administrative assistant, Mrs. Pat 

Van Deventer, who would be 

making the transfer with the children. 

February: A flurry of visits back and forth. Many key individuals from both schools were detailed to 

visit the other school, and gather 

specific data. For example, 

therapists from Badger went to 

Glendale to consider accessibility 

problems, bathroom needs and 

special areas of therapeutic 

equipment. Dr. Johnson and Mrs. 

Van Deventer met regularly—first 

at one school, then at the other. Dr. 

Johnson explained, “It was the only 

way I could get a 'handle' on the kids 

and their needs." 

February 17-18: The entire 

Badger staff visited Glendale. They met with Dr. Johnson and toured the 

building. The teachers were given a 

chance to express their ideas about 

the move and suggest areas where 

their class would fit best at Glendale. 

March 7-18: Many small groups visited Badger. During this two- week period, 22 groups of parents 

and teachers from Glendale toured 

the Badger School. They attended 

special presentations and were 

helped to get an understanding of the measurable growth that was 

taking place in the handicapped 

students. When the Glendale 

teachers and parents began to 

understand the developmental 

patterns that were being cued and 

reinforced in the children, they 

started to speak hopefully about the 

coming merger. ("I think our kids 

will get more from your kids." . . . "It 

looks like we have a lot of work to 

do together.") 

April: Numerous detail meetings were held. The three alternative 

floor plans had been narrowed to 

one: The Badger students were to 

move into the east section of the first 

floor. The time had come to get 

down to planning and carrying out 

such specific details as bus access, 

ramping, widening classroom doors, 

constructing additional bathrooms, 

allocating space for therapeutic 

equipment and remodeling new 

classroom areas for the regular 

students. Dr. Johnson and Mrs. Van 

Deventer delegated detail work to 

every staff member in both schools. 

May 2: Glendale personnel 

began inservice training at Badger. An all-day inservice training 

program on the education of 

severely and profoundly 

handicapped persons was scheduled 

for all Glendale staff members and 

some parents. The schedule 

included rationales and demonstrations of training techniques, video- taped records of measurable growth 

in the Badger children and slide presentations describing each classroom situation. 

May 16: lnservice training at Glendale for Badger personnel. At 

this training session, special 

educators and parents of 

handicapped children learned about 

programs in a regular school. 

Interestingly enough, many of the 

special education teachers had never 

been exposed to regular education. 

May 19: Both schools attend a 

final meeting at Glendale. This 

meeting, which took place a few 

days before the end of the 1976-77 

school year, was the largest, most 

climactic meeting of all. Smallgroups were scattered everywhere 

to review and comment upon the 

complete plan. This was the 

opportunity—planned by Mrs. Van 

Deventer and Dr. Johnson—to get 

everybody to "process" the plan in 

their thinking one more time. 

Summer: The long-awaited move 

took place. The heavy planning was over. Remodeling crews went into 

action and trucks began moving 

equipment and furniture from 

Badger to Glendale. By July 1, 1977, Badger School was an empty shell. 

Fall: The new school year began. The opening of school was similar 

to other years, except that some 

children needed help finding their 

new classroom. The fact that the 

school now had six classes of 

severely and profoundly handicapped children was simply accepted. 

In the first four weeks of school, 

no formal mention was made of the 

new schoolmates from Badger. 

During the fourth week, however, 

every regular teacher was teamed 

with two special education teachers 

to plan an inservice program on 

severe and profoundly handicapped 

children, each session was designed 

with the regular students in mind. 

Each class in the school received a 

program geared to its level. Regular 

students were helped to handle and 

operate special equipment, ride in 

wheelchairs, walk on crutches, 

balance blindfolded on a tilt board, 

role play critical situations, watch 

videotaped interventions and see 

audio-visual presentations on mental 

retardation. Older children were 

encouraged to write out specific 

questions requiring elaborate 

answers; some even wrote lengthy 

compositions on various aspects of 

being handicapped. 

When the sessions were over, 

many things happened spontaneously. Some classes asked for 

follow-up sessions, while other 

classes invited the handicapped 

children to their rooms for parties. 

But most remarkable of all, 

individual students—during lunch 

break and recess—walked into the 

special education classes and asked 

if they could help. 

Looking back on the merger, one 

can only say that it happened—

without fanfare and without special 

assemblies to prepare the students. 

For the most part, the students were 

already prepared. But why wasn't 

there more resistance? (The principal did not receive one negative 

phone call.) The answer can be 

found on three levels: 

 The district administrators made 

a crucial, forward-looking decision that reflected the most advanced 

trends. 

 Two leaders possessed the abil- ity to draw up a plan which allowed 

people to speak their minds repeatedly and "process" their thinking. 

 That staff and parents of the two schools were able to counsel and 

train each other—over and over 

until all the myths and fears had 

fallen away. This was the most 

powerful strength of all. 
Public School Education

THE IMMENSE JOURNEY: 

FROM BASEMENT TO 

CLASSROOM 

In a guest editorial in the "Pottstown 

Mercury" (January 23, 1976), 

James Hirst, the father of a retarded 

son, called for the inclusion of 

handicapped children in the public 

schools. The editorial drew some 

negative letters to the editor. One 

woman who signed herself 

"Skeptic" said, "I thought it was a 

wonderful idea, but it's a shame it 

won't work in our society today. 

Children can be cruel . . ." She then 

described some of the destructive 

myths that grow like weeds in our 

society. 

Today, as extraordinary efforts are 

being exerted to heal the breach 

between the mentally retarded and 

the so-called normal persons in our 

nation, such myths must be dealt 

with one by one. This is no easy task. A society does not surrender its 

myths easily. 

Owen J. Roberts Middle School

Pottstown, Pa. 

Today, a class of "trainable" mentally retarded students-11 of them—

attend classes in this regular school 

building, located in the rural 

countryside outside of Pottstown. 

With the regular students, they ride 

the school bus, eat in the lunchroom, 

attend assemblies and enjoy all the 

general rights and privileges of this middle school. 

In addition to specialized 

programs in their own classrooms, 

they attend special courses with 

regular teachers in gym, art, music, 

home economics, industrial arts and 

swimming. Regular students spend 

periods in the special class as 

teaching "advocates," assisting 

handicapped students with such 

tasks as counting money, sorting, 

telling time, measuring and using a 

calculator. The advocates became 

involved after responding to one of 

the all-school requests for volunteers. 

Although 70 to 100 volunteer each 

semester, only 10 to 15 can be used 

efficiently each week. These 

advocacy relationships have 

remarkable carryover into the halls, 

lunchrooms and playgrounds, 

where friendly greetings and 

conversations between handicapped 

and non-handicapped students are 

numerous. None of the predictions 

that regular students would inflict 

cruelty and ridicule on the handicapped children have materialized. 

The special class—now accepted 

as a natural part of the student 

body—came into being after a long, 

hard struggle by a few families, the 

responsiveness of Chester County 

Intermediate Unit #24 (which is 

administratively responsible for 

such classes) and the willingness of 

the Owen J. Roberts School District 

to work with handicapped persons. 

It is common knowledge that parent concern and pressure have 

impacted creatively on the 

education of handicapped persons, 

but few have so thoughtfully 

documented their struggles and 

successes as precisely as one family 

in Chester County. Consequently, 

their efforts stand out vividly in this 

description. 

The family has twin sons, 14 

years of age, who now attend Owen 

J. Roberts School. Sam is in the 

school's program for the gifted, 

while Jim, a victim of Down's 

Syndrome, is in the special class. 

When they were five years old, Sam 

was admitted to kindergarten, but 

Jim was sent to a nursery for a few 

hours each day. Thus began a series 

of inequities in their education that 

lasted for seven years. Sam moved 

up the educational ladder with ease; 

Jim's ladder became an obstacle 

course. His journey—which started late—looked like this. 

 At eight years, Jim began attending a segregated special education 

school at Coatesville which was 

operated by the Intermediate Unit 

(IU). His travel time to and from 

school was over an hour each way. 

 At 10, he attended a school ope- rated by the IU in a Phoenixville 

church basement. 

 The next two years were spent in an IU-operated church basement in 

Spring City. 

In all of this time, the parents were 

painfully aware of the differences in 

the amount and quality of education 

their sons received. Jim always 

seemed to be traveling farther and 

getting less. In the last church basement, there were three special 

classes, no playground and a catered 

lunch that, according to reports, usually consisted of soup and sandwiches. Sam, on the other hand, 

traveled a few minutes from home 

to a regular school where he 

received a "full service" education. 

Year after year, the parents wrote 

to and met with government 

officials trying to correct the 

"blatantly unfair" discrepancies 

between Sam's and Jim's 

educational opportunities. They 

were received politely, but little was 

done. Then, in January, 1975, the 

parents wrote "A Proposal for a 

Mainstreaming and Normalization 

Program for Mentally Handicapped 

Students in Chester County." The 

proposal was sent to key state officials and was circulated locally as 

well. The document contained the 

following details: 

 A detailed list of the educational 

components Sam received in the 

regular school. 

 A detailed list of the same components which Jim did not receive. 

Some examples: a full range of programs, a safe and stimulating environment, sufficient staff, equipment 

and materials, a full range physical 

education program, a school nurse, a 

rich offering of general all-school assemblies, rallies, sporting events 

and cultural arts and activities. 

 An eight-point program for the development of "a model antisegregation and tactful but escalating" 

program of mainstreaming activities.  Functional definitions of "mainstreaming," "normalization" and dehumanization." 

 An added definition showing how the county historically engaged 

in the practice of "educational 

grouping by defect." 

 A series of to-the-point quota- tions by nationally recognized 

experts. 

 An appendix of newspaper clip27
Public School Education 

pings documenting that the public schools in the area had many 

empty seats (18,000, according to 

one survey). 

 An appendix of in-school and extra curricular educational 

offerings available to all Owen J. 

Roberts students. 

The parents gathered confidence 

from the data they had compiled 

and began discussions with an 

attorney. In a low-key way, they 

made it clear that they were willing to test their data in a court of law. 

Simultaneously, the IU had been 

hard at work renting space in public schools and placing some of their 

special classes in them. There were 

many obstacles to be overcome. 

For example, some parents were 

petrified at the thought of having their handicapped child in a regular 

school; others feared their children 

would be victims of an 

overwhelming prejudice. Unlike 

the parents of Jim and Sam, these 

parents worked hard to block the 

transfers. 

By spring, 1975, it was decided 

that the nomadic special class 

which Jim attended could make its 

home in the Owen J. Roberts 

District. However, when the 

decision was discussed with some 

parents of the class and other 

interested citizens, some 

understandable apprehensions 

were voiced. Most of them 

centered on the fear that regular students would be cruel and 

ridicule the retarded students. After 

thorough discussion, it was decided 

to go through with the merger. By 

that time it was summer. Everyone 

waited with a mingling of hope and 

fear for the coming school year. In September, the class moved 

into the District System. The 

children spent their first year at the 

Vincent Elementary School, where 

none of the parents' fears 

materialized. Then, because they 

were growing, the youngsters were transferred to the middle school. 

Many parents of the 

handicapped are active in the 

regular parent organization of the 

school. The principal has an open 

coffee hour for all parents once a 

week. According to him: All of our apprehensions about 

them didn't happen. Instead, 

the regular students are better 

because the handicapped are 

here. The warmth of the special class has permeated the whole building. And best of all, 

I haven't heard one regular stu- dent speak disparagingly or 

make fun of a handicapped 

student. 

The teacher of the special class, 

who had been with the students 

since the days of the church 

basement, had developed a 

closeness with them and had 

demonstrated a remarkable 

competency in documenting each 

student's individual growth. He described the changes he saw in his 

students as a result of the merger: They show so much more 

vitality here with the regular 

students. When I watch them 

interact with the other students 

on the playground, in the 

lunchroom and in the halls, I 

can see it has been like a shot 

in the arm to them. It has been 

a beautiful experience. 

Jim's twin brother, Sam, who is 

now involved in the "academically talented program" and doing 

independent research in astronomy, 

probably has the sharpest insights 

as to how his brother now 

functions: 

It's great! Jim and I ride the bus 

together to the school now, and 

his improvements are tremendous. His speech has 

improved dramatically. His 

behavior is so much better. 

Now, on our days off, we go to 

the mall and shop together, and 

all kinds of kids are walking up 

to say "Hi" to Jim and visit 

with him. They are all kids he 

got to know at school. Believe 

me, it's so much better than the 

days when he attended school 

in a church basement. 

Recently, the parents of Jim and 

Sam did an interesting thing. They 

sent a letter to the school officials, 

thanking them for making it 

possible for Sam and Jim to be 

together in the same school district. 

In that letter, they made a detailed 

list of 17 educational experiences that Jim now had, which he never 

had before. 

COMMUNITY 

REFERENCED EDUCATION 

As a child without sight or hearing, Helen Keller, suddenly one day ran 

from object to object, and—with tears of joy in her eyes—she called each one by its name. Although 

mentally retarded persons may not 

react as dramatically, the richness 

of their lives—and sometimes their 

survival—depends on connecting 

what they learn in the classroom 

with everyday objects and events in 

the community. 

La Follette High School, Madison, 

Wisconsin. 

For a group of teenagers having 

both hearing impairments and 

mental retardation, education 

within the walls of a classroom was 

not enough. Consequently, the community had become their 

classroom, too. They, and their 

teachers, are learning that the town is alive with things which, when 

experienced in conjunction with 

their school lessons, enable them to 

function on their own, with greater 

skills and confidence, in the real 

world. 

Although the teenagers' program 

has a high degree of relevancy and practicality, the teacher of the class 

made it clear that ". . . a program 

like this must have a high staff ratio, 

and the school must be close to 

many stores." La Follette High 

meets these requirements. For four 

multihandicapped students (ages 15 to 17), there is a teacher, a 

teacher's assistant, volunteers from 

the university and a number of 

regular high school students who 

serve as individual tutors receiving 

credit from the school's 

independent study department. 

In the vicinity of the school, there 

are many stores and facilities that are 
Public School Education 

part of their training forays. For 

example, the students carry out 

sequential training forays at: Donut Land, McDonalds, the Post Office, 

a small grocery store, variety store, 

hardware store, bicycle shop, paint 

store, bowling center, clothing store, 

handicraft shops, supermarket and 

drug store. As their competency 

increases, they also travel by bus to 

the city library and large shopping malls. 

In class, all students work to 

develop competency in "total communication" (hand signs and voice), 

but they resort to a special 

notebook system for 

communicating with people in the 

community. The notebook 

contains a number of message 

pages, each encased in plastic, which are individualized to the student's level of functioning in 

various community settings. On a 

specific day, 16-year-old Larry's 

notebook contained the following 

messages: Page 1: An identification page 

(including Larry's name, 

address, phone number and 

who to contact if lost.) 

Page 2: "I am hearing impaired. 

I will show you a note." 

Page 3: "I want to buy . . ." (A 

list of items can be slipped underneath the plastic. At the 

present time, they are pictures. 

Later, key words can be used 

as Larry learns to identify 

them.) 

Page 4: A communication 

page with messages for the postal clerk. 

Page 5: A communication 

page for buying lunch at 

McDonald's. (It includes the 

regular checklist used by 

counter employees and also 

pictures of mustard and ketchup). 

Page 6: A page for getting 

photographs developed. (Larry takes many pictures in his 

educational program.) 

Page 7: A page for buying film. 

Page 8: A page for buying 

flash-bulbs. 

Page 9: A page requesting help 

in tieing his shoes. (Larry also 

has cerebral palsy problems.) 

The notebook is constantly 

revised as Larry's competencies 

and needs change. This ingenious communication device has helped 

students move competently 

throughout the community and to 

make decisions they have never made before. The student first goes into a setting with his notebook 

accompanied by a teacher or tutor. 

Then, as the student develops, the 

presence of the tutor is phased out 

until finally the student and his 

notebook move into the community alone. 

Each student's community 

assignments are carefully written into a sequence of steps that are 

tailor-made for that girl or boy. 

Seventeen-year-old Margaret, for example, now has the following 

steps dealing with shopping in a 

grocery store. Margaret will: (1) walk to the store: (2) select 

purchases: (3) check them off her 

list; (4) stand in line; (5) pay 

money; (6) receive change; (7) 

accept purchases; and (8) walk to 

the class. Each step is watched 

closely until Margaret can do them 

independently. With George, a 15-

year-old, this particular task was 

broken into a series of smaller tasks 

of approximately eight steps each, since he is not as proficient as 

Margaret. 

The noteworthy thing about Margaret's and George's shopping 

objectives is that they serve as an 

excellent educational program for carrying out what educators call 

"sequencing events in time," "tallying," "counting," "directioning," 

"developing spatial skills" and 

others that can be dealt with 

individually or in groups as 

necessary. 

No task in the community is 

undertaken without a personalized, 

detailed checklist of behaviors. 

There are others having to do with 

crossing streets, observing traffic signals, finding directions, and 

using the Laundromat, to name but 

a few of hundreds of tasks. 

"The whole neighborhood has 

become our classroom," says the teacher's assistant. (She is in charge of the in-the-community activities, 

while the teacher handles the inclass academics derived from these 

experiences.) "Wherever we go, 

we find a new learning task that can be detailed and carried out step 

by step. Some of the students even 

go to an apartment and take 

training in how to keep it clean." 

How have the students been 

received by the community? 

"Simply great," the teacher says. 

"We should build monuments for 

those people out there. Take 

McDonald's, for example. Those 

people are beautiful. They know our kids, they understand what they are trying to do and they have 

patiently worked to understand 

them." 

When Terry went alone with his 

notebook to the hardware store, his 

note on the I-want-to-buy-page— his first scrawled attempt—said 

"Key Lockers." The salesman 

understood that Terry wanted to buy a lock for his locker and the 

purchase was made. 

The teacher, reflecting on that 

event, commented, "You know, 

that was our class's first written 

communication to the outside 

world." Since then, there have been 

many more, and this practical, 

detailed educational tactic called 

"community referenced education" 

has made them possible. 

29
Public School Education

THE TEAMING OF 

REGULAR AND SPECIAL 

TEACHERS 

All too often, there is a wide gulf 

separating the regular classroom 

teacher and the special education 

teacher. One regular teacher in a 

public school on the West Coast put 

it this way: We don't have much in 

common. The special teachers have 

a different type of training, and they do things differently. They work 

with small groups of six or eight, 

while my class has 28 students." A 

special teacher from the same 

school agreed. She felt that she was 

treated cordially, "but somehow I 

don't feel that I and my class have 

been fully accepted in this school." 

The separation in this school is 

more real than imagined. Almost all 

activities of the special classes are 

carried out in their own area. The 

children come to school and leave at 

a different time. They study and eat 

lunch in their own groups. 

Nevertheless, the two special classes 

in this school were seen as a 

crowning achievement by the local 

association for retarded citizens and 

by a local university professor of 

special education who rated their 

IEP's (Individual Education Plans) 

as among the best in the nation. In 

spite of many interviews that elicited 

cutting edge ideas being used in the 

class, the longer one listened, the 

more one was struck by the 

apartness in this school. It is a far cry 

from what is happening in Madison, 

Wisconsin. 

East High School, Madison, 

Wisconsin. 

The wall is coming down 

between regular and special 

teachers here at East High. On 

second thought, there are two

walls that are collapsing, since 

each side had built up its own 

defenses. The thing that made it 

really happen here stems 

largely from our policy to put 

special and regular teachers 

together in team teaching 

programs whenever possible. 

So spoke the assistant principal, 

who, along with his many other 

duties, is in charge of the special 

education efforts in this large urban 

high school (population: 2400 

regular and 160 special students). 

Although the school has a long 

history of successful integration of 

handicapped and regular students in 

the halls, lunchrooms, assemblies, 

athletic events and general student privileges, the school has recently 

instituted other impressive features: 

 The first 4-H organization for handicapped students in the state 

operates at East High. 

 "The Learning Shop," a volunteer tutoring organization of 

regular students, takes assignments 

with mentally retarded students. 

 "Drop In Night," a recreation program taking place one evening a 

week, encourages the participation 

of handicapped students. 

 A sizeable, community-ref- erenced, on-the-job training 

program places handicapped 

students and supervises periods of 

labor at work stations throughout the 

town. Seventy-five percent of these 

jobs are employer paid. Some 

examples: The Department of 

Public Instruction (filing and library 

aide work); a building maintenance 

corporation (custodial services for 

office, apartment and commercial 

buildings, as well as landscape 

services); a restaurant chain 

(washing dishes and busboy work); 

day care centers (child care aides); a 

bank (shredding records), a motel 

(room cleaning); and the Red Cross 

(collating, labeling, stapling). 

There are key components that 

receive special attention when a 

team teaching program is undertaken. They are: 

 A regular and special teacher are 

carefully matched. In the words of 

one teacher, "It's almost like a marriage. They have to get along together or everything is lost." 

 A creative interchange of knowl- edge and skills must take place. 

 Both teachers must undergo intensive inservice training 

programs. 

 Instructional program plans are worked out together and specific 

responsibilities are assigned. 

 The team must develop an 

evaluation procedure. This 

procedure not only measures how 

far each student has come; it serves 

as the groundwork for next year's 

course offerings as well. 

The team is expected to conduct a 

basic course for handicapped students for one year. By then, some 

students have developed sufficiently to be tried in a regular course, with 

the regular teacher in charge and the 

special teacher dropping in as an 

advisor; other students may need to study in a special class led by the 

special teacher, with the regular 

teacher serving as a resource person. 

Today, at East High, there are 

team teaching arrangements in 

physical education, agriculture, art, 

home economics, business and 

industrial arts. Plans are now 

underway for courses in horticulture. 

This coming together of teachers 

has richly influenced both members 

of the team. A special education 

teacher described the feelings that 

each has developed for the other: I find the regular teachers have 

come to respect and admire me 

for what I can do. They 

understand why a special education class must have a richer 

teacher-to-student ratio. Now 

they say, "I don't know how 

you do it." On the other hand, I 

am impressed with the wide 

grasp of knowledge that a 

regular teacher can bring to a 

subject. I'm learning as much 

from them as my students are." 

At East High, the differences 

between special and regular teachers have not been seen as an excuse for 

polite separation. Instead, it has 

become an opportunity for the 

creative development of a richer 

curriculum for all students. Special 

and regular teachers are no longer 

treated as two separate camps; rather, 

they represent a powerful, single, 

highly expanded program. Does this 

unique kind of team teaching work? 

The assistant principal says it does 

and—better than that—he feels it is 

"one more key to making today's 

educational desert bloom." 
Public School Education 

MENTALLY RETARDED 

PERSONS GO TO COLLEGE 

By 1980, all 50 states will require 

the public education of mentally 

retarded persons until the age of 21. 

This cutoff point would be fair 

enough were we dealing with 

normal human beings. However, 

when applied to mentally retarded 

students, it is little short of tragic. 

Many handicapped persons are in 

the middle of the richest learning 

processes of their lives when 

"graduation" comes and the 

strengthening and liberating force of 

special education is abruptly stopped. 

But need it stop? Should the end 

of public education mean the end of 

the retarded person's development? 

After all, many normal young men 

and women go on to college, so 

why can't the retarded go, too? 

Denver, Colorado. 

Severely handicapped persons are 

walking the campus of this fouryear college as students. They carry 

college I.D. cards, attend school 

functions such as dances, rallies and 

the college movie series, and have 

regular access to the library and 

physical education facilities. They 

take courses, too. Not courses like 

Sociology 10B or Engineering 

Problems 2C, but such courses as 

General Experience Course (for 

students with deep handicapping 

conditions), Money Management, 

Riding the Bus, Assertiveness 

Training, Getting Along with 

Others, Symphony Appreciation, 

Keeping Healthy, Human Sexuality, 

Dating, Creative Cooking, Camping 

and Whitewater River Rafting. The 

list of courses is subject to yearly 

change, since it is based on what the 

students say they want to learn at a 

previous registration. 

The department responsible for 

these courses is called the College 

for Living. Its birth took place when 

four problems were harnessed into a 

single solution: 

 Denver had many mentally retarded adults whose quality of 

living was bleak. 

 Some students were pleading for on-the-line training experiences. 

 Some professors longed to tackle the practical problems along 

with the usual theoretical ones. 

 Already paid-for classroom facilities were not being utilized 

during certain hours. 

Little money is involved in the 

program, but everyone earns 

dividends of one sort or another. 

Regular college students become 

the teachers and receive college 

credit for doing so. The professors 

find that their teaching takes on new 

energy and relevancy. And the 

mentally retarded adults, who 

receive the biggest dividend of all, 

are committed to specific learning 

tasks and realize the joy of doing 

things they have never done before. 

Teacher preparation begins when 

college students respond to publicity campaigns and attend screening 

interviews. If accepted, they enroll in a five-day orientation course (one 

credit) which includes: sessions on 

attitudes towards handicapped persons; panels of mentally retarded adults discussing their hopes and 

concerns; programs on teaching 

techniques; skill training in testing, 

evaluating and measuring the success of students; and tours of such 

facilities as nursing homes, institutions and community based services. 

The orientation is intense and most 

trainees emerge with far more 

enlightened views about handicapped persons. 

The handicapped students register 

for courses just as all college students do. Some pay fees and some 

receive "scholarships." However, 

each student tells his or her registration counselor what he or she wants 

to learn in the future. These suggestions are reflected in the course 

offerings next semester. For 

example, some of the students were 

aware of "whitewater rafting," a 

popular sport on Colorado's 

mountain rivers. They requested a 

training course on the subject. The 

next semester, White- water River 

Rafting was on the course list. 

Classes are conducted with a 

four-to-one or five-to-one studentto-teacher relationship. All are 

individualized instruction programs. 

On the first class day, each student 

negotiates his or her own learning contract. For example, a student in 

money management chooses specific tasks he or she wants to undertake, from a wide range of 

possibilities: counting money, 

writing checks, weekly savings, 

keeping track of expenses and 

survival math. If a student has any 

other money management topics 

he'd like to work on, chances are the 

college will be able to 

accommodate him. 

Goals are written down. Both 

teacher and student keep a copy. 

Midway in the semester, the goals 

are discussed and modified as 

necessary. At the end of the 

semester, the goals are reviewed. 

When the semester ends, the 

students, attend a special recognition 

night and receive certificates of 

achievement. Often, the president of 

Metropolitan State College 

participates in the ceremony. 

In less than four years, Metropolitan State's College for Living has 

expanded enormously. In September, 1974, the program began 

with five teachers, 21 mentally 

retarded students and a $600 budget. 

By Spring, 1976, there were 40 

teachers and 200 students. The program has been replicated at the University of Colorado at Boulder, 

Mesa College at Grand Junction, the 

University of Southern Colorado at 

Pueblo. All told, there are today 842 

students and 206 teachers on 11 college and university campuses in 

Colorado. 

The expansion has even moved 

beyond the state's borders. Programs 

can now be found at: The College 

of Staten Island, Staten Island, New 

York; Northern Virginia 

Community College, Annandale, 

Virginia; Mesa Community 

College, Mesa, Arizona; and Prairie 

Development Center, Atwood, 

Kansas. The trend continues at a 

rapid rate, and there is no sign of it 

slowing down. 

See page 75 for photographs taken at 

Metropolitan State College.

31 

Community Residences 

IN OUR NEIGHBORHOOD, 

YES! 

For years, people living on ordinary 

streets in ordinary communities had 

been led to believe that anyone who 

was mentally retarded should be 

sent away. The belief seemed right 

because most of the community's 

religious, therapeutic, legal and 

social spokesmen said it was right. 

Then, not too long ago, some 

citizens became convinced that 

sending retarded persons away was 

wrong, and they called for the return 

of handicapped people to the 

community. But others responded: 

not in my neighborhood you don't!

Such a reaction is, unfortunately, 

only to be expected. Many people 

do not cast off easily the beliefs 

inherited from previous, less 

enlightened generations. Try to 

change their minds and, more often 

than not, you earn only their wrath 

in return. 

However, there are enlightened 

communities in the nation. In these 

communities live people who have 

organized themselves for the purpose of continually casting fresh 

light on neighborhood practices and 

beliefs. The-communities are not 

perfect, of course, but with the 

enlightenment they gain, destructive 

beliefs are diminished and strides 

are being made toward attaining 

what is fair and just for everyone in 

the neighborhood, including 

mentally retarded persons. 

Hopefully, the gains these organized 

communities have made will help 

light the path for other neighborhoods which are also struggling 

to move out of the dark ages, too. 

Philadelphia, Pennsylvania. 

A community of 35,000 people in 

northwest Philadelphia, an area that 

is approximately 12 city blocks 

wide and 20 blocks long, has 

organized itself and has begun to 

take control of its own destiny. The 

neighborhood is racially integrated and the residents are drawn together 

by an active, grassroots community 

organization known as the East 

Mount Airy Neighbors, Inc. 

(EMAN). The ability of the 

residents to organize and carry out 

neighborhood tasks gives them a 

functioning identity that is unique in 

the City of Philadelphia. 

For example: EMAN, with its 

1600 paid members, its board of 36 

representatives and six officers, 

operates a day care center, a 

community center and skill center 

for teenagers. It administers a block 

organization plan which carries out 

low profile safety and 

communications programs which 

require neither weapons nor CB 

radios. It organizes an annual 

community fair, campaigns against 

graffiti and enlists volunteers to 

beautify the landscape. 

Small wonder, then, that when the 

State of Pennsylvania advertised for 

community homes for mentally 

retarded persons coming out of institutions, EMAN was one of the first 

organizations to respond. 

Today, four group homes—three 

for adults and one for adolescents—

are located in separate locations in 

the neighborhood. Each home 

houses six mentally retarded 

persons who live—at least as far as 

casual passers-by can see—pretty 

much as other people live. Outside, 

the homes are similar to the other 

residences on the block. Inside, the 

decorations are bright and tasteful, 

the furniture, new and comfortable. 

Each of the four homes is not only a 

nice place to visit, but a nice place to 

live, too. 

The program is built according to 

the highest principles of normalization, with residents being trained to 

live independently in the 

community. They learn to cook, do 

their own laundry and do everyday 

household tasks. During the day, 

they either work at their jobs or are 

in full-time training for a job. 

Evenings, weekends and holidays 

are busier than in most residential 

programs, with many opportunities 

for adult education and recreation. 

Since some residents have progressed to the point where they are 

ready to live in a less restrictive setting, EMAN is developing four 

apartment programs which will be 

dispersed throughout the 

community. 

Two graduates of the group 

homes will move into each 

apartment and live semiindependently. The next step will be 

for the residents to find their own 

living quarters, with the staff 

gradually offering less and less 

support. 

The administration of EMAN'S 

residential services is simple and 

highly efficient. There is an 

executive director and an 

administrative assistant. All other 

staff members are involved in direct 

care, including two full-time and 

two part-time employees in each 

home. Funding is provided by the 

state's Community Living Arrangement (CLA) program. The present 

budget is $280,000, which breaks 

down to approximately $11,600 per 

person each year. (Although an 

exact Comparison cannot be easily 

arrived at, due to other factors 

involved, the yearly cost is $23,000 

per person at the nearby institution 

where some of the group home 

residents once lived.) The annual 

budget for the apartment program 

will be $60,000, reducing the_ cost 

to $7500 each time a handicapped 

person moves into an apartment: 

Although more could be said 

about the technology of the program, 

its most significant cutting edges lie 

in the following organizational 

strategies: 

 The program was initiated by 

the community. This is not a case of 

impersonal state officials and community agents attempting to impose 

community living for retarded citizens on a neighborhood. It was the 

community's choice entirely. 

 The planning and development 

were deliberately kept low profile. No press releases were sent to newspapers, announcing the opening of 

the group homes, as some agencies 

have done. Since that sort of thing is 

not done when other persons move 

into a home, why do it when retarded 

persons move in? There was even 

a low key, door-to-door discussion 

33
Community Residences 

campaign with the neighbors surrounding the home earmarked for 

purchase. In one block, there were 

neighbors who reacted negatively; 

that home was quietly dropped f mro the list of possibilities.  No attempts were made to compete with existing agencies. EMAN 

made it clear that it was only interested in tapping its own neighbor- hood's potential for rendering 

human services to others. The local 

group admitted its amateur 

standing in the midst of so many professionals with years of 

technical training, and felt that 

c mo petition would be foolish.  The program offers few "tourist 

attractions." EMAN helps us all to 

see that the more normalizing 

and—to coin a new phrase for the 

field—the more "neighborly" a 

program is, the less there will be for 

mental retardation service "tourists" 

to see. There are no buildings 

named after trees, heavenly places or dead professionals; no 

commemorative plaques; and no innovative architecture and 

equipment. Instead, a visitor will 

find ordinary people, living in ordinary homes and doing the ordinary things that everyone else does. It is 

worth noting, by the way, that those 

individuals who entered the group homes from institutions looked 

much more retarded when they came than they do now. 

 Mental retardation becomes a 

community problem. For years; the tendency has been for communities 

to pass off most of the 

responsibilities for the care and 

training of mentally retarded 

persons as problems for the state to 

handle. EMAN chose to accept all 

the responsibilities itself, believing as it did that the problems of integrating mentally retarded persons into a 

be community can usually 

hu

they s in the 

od. 

retarded citizens was 

organized by states in a

 solved more efficiently at the 

local level. 

The EMAN group home 

program is a pioneering approach, 

and one wonders how this 

community took a problem that has 

been so complex nationally and managed to make it appear so simple. One clue can, perhaps, be 

found in the EMAN motto: Help 

make a good community better. Another clue is provided by 

Dennis' Johnson, chairman of the 

group home board, in his 

description of EMAN as "an 

attempt to help everyone get along 

with each other, and to develop man service assistance as a 

byproduct." 

Still-another clue can be found in 

the words of Eversley Vaughan, a respected community leader, who 

wrote in a 1973 newsletter: "Something exciting is happening in 

EMAN—we have discovered 

each other and have declared 

ourselves to be interdependent." From these clues, we can begin to 

see that the secret of EMAN's 

success does not lie primarily in the 

training skills and program 

technology, as outstanding as may be. Rather, it lie

attitudes of the neighborho

THE RESIDENTIAL 

CLUSTERS OF 

EASTERN NEBRASKA

Not long ago, the delivery of residential services to mentally 
Community Residences 

very simple way: All resources 

were channeled to "total" institutions. 

Every dollar and every service activity was administered by a single 

agency which was responsible for 

all the needs of the handicapped 

resident. 

It will never be that simple again. 

Indeed, the delivery of residential 

services to retarded persons in their 

own neighborhood will be an 

extremely complicated task, 

requiring more agencies, people and 

funding than ever before. Although 

many regions in the nation have 

begun to build such systems of 

residential services, no one has as 

yet completed the task, and no one 

knows what final shape such 

organizations will take. 

Eastern Nebraska Community 

Office of Retardation, Omaha, 

Nebraska 

On July 1, 1968, the Greater 

Omaha Association for Retarded 

Citizens presented the Douglas 

County Board with a plan which (1) 

described all components needed in 

a system of community based services for mentally retarded persons 

and (2) called for the return of all 

handicapped persons from the 

county who resided in Beatrice State 

Home, 90 miles away. The plan 

was approved. A few months later, 

neighboring Cass, Dodge, Sarpy 

and Washington Counties joined to 

make it a five-county effort, and one 

of the nation's most ambitious 

deinstitutionalization programs was 

underway. 

The five-county program took place 

simultaneously with a larger state 

effort. In 1967, the governor 

appointed a Citizen's Study 

Committee on Mental Retardation, 

authorizing the committee members 

to survey and report on the human 

situations of retarded citizens 

throughout the state. That report was 

submitted to the governor on the 

same day that the Omaha group 

presented its plan to the Douglas 

County Board. 

• The state report documented that 

Nebraska was one of the least progressive states in the nation with 

regard to planning and funding for 

mental retardation services. Conditions at Beatrice State Home, the 

state's single large institution for 

mentally retarded persons, were 

grim. It was located in a remote, 

rural section of the state; it, 

contained 2300 handicapped 

citizens who were forced to live in 

deplorable, overcrowded 

conditions; and the cost per resident 

was a mere $3.58 per day. At the 

same time, there were virtually no 

community services for mentally 

retarded persons in the state. This 

report received massive publicity 

which reached almost everyone 

from the citizen on the street to the 

governor himself. 

By 1969, a total of 14 state laws 

were passed with mandates ranging 

from the organization of the state 

into six powerful community based 

service regions, to the repeal of a 

law ordering institutionalized 

females to be sterilized before 

moving back into the community. 

It was with this added impetus 

that the five counties in Eastern 

Nebraska, comprising one-third of 

the state's 1.5 million population, 

were formed into Region VI, the 

Eastern Nebraska Community 

Office of Retardation (ENCOR). 

ENCOR began immediately to 

develop community service thrusts. 

The following is a description of the 

residential component of this 

regional service system as it exists 

today: 

 Support the Home First. Through the years, ENCOR's 

policy has been to do everything 

possible to help the mentally 

retarded persons live at home before 

offering them residential care in the 

community. All ENCOR divisions 

join with many generic agencies to 

provide services which support 

mentally retarded persons in their 

own home. For adults, "home" 

means their natural setting in the 

community; and for children, it is 

with their family. 

 Residential Clusters. Today, 

handicapped clients who have come 

from the institution or who can no 

longer be supported in their own 

home, live in one of 17 clustered 

subsystems of residences, where 

they are being helped to move 

through less and less restrictive 

settings and to take on more and 

more personal responsibilities as 

they develop. As clients become 

more responsible, they have 

increasingly less need for ENCOR 

services. To carry out this 

developmental process, each cluster 

is organized with one core residence 

and from 12 to 15 alternative living 

units (ALU's) around it. 

 Core Residences. A core residence is a group home of not more 

than six recently admitted handicapped clients who live there for an 

average of from three to six months 

in order to "settle in." Here, the first 

individualized program plan (IPP) is 

developed by an interdisciplinary 

team consisting of the necessary 

ENCOR staff and other agency 

consultants, as well as the client and 

a family member or guardian. This 

first IPP is launched shortly after the 

client enters the core residence; it 

provides the initial data on an 

individual's growth pattern. 

The recent admission of Mary 

Ann, a 43-year-old former resident 

of the institution, provides an example of ENCOR's initial 

program planning. She is learning to 

travel into the surrounding 

community, to use the telephone, to speak more clearly (teeth and jaw 

formation are being evaluated for 

possible surgical corrections 

simultaneously with initial speech 

training), to work daily in an 

industrial training center, to achieve 

a series of beginning industrial skills 

and to take part in various 

recreational opportunities. Also, 

Mary Ann is learning to maintain 

her own bedroom, carry out other 

specific housekeeping tasks and 

adopt acceptable behavior patterns. 

As these initial tasks are accomplished, Mary Ann's personal growth 

pattern will become more apparent 

and predictable and an alternative 

living unit, fitting her needs will be 

sought. Central to this 

developmental pattern is the core 

residence, the supervising "mother 

house" for the ALU's it develops. 

 Alternative Living Units. It is the 

responsibility of the staff assigned to 

35 
Community Residences 

Mary Ann's core residence to find 

an ALU in the community that 

meets her developmental needs and to change the ALU when her 

continued progress warrants it. 

The numerous ALU's that now 

operate in the ENCOR system are, 

of course, as individual as the 

clients serviced by the system. An ALU can house from one to four 

handicapped clients; be in a city, a 

small town or on a farm; require 24 

hours of intensive supervision or 

only three hours a week for 

assistance with shopping and 

checkbook balancing. Some clients 

live with a family in the community; others live alone in an 

apartment. Some may require only 

short-term crisis assistance, while 

others need long-term intensive 

training. As one ENCOR 

spokesman put it: "An ALU is any 

residence a particular person 

needs." All of the details are 

determined by the ever-changing 

IPP. 

Many changes have taken place 

since the day the state report and 

county plan were submitted. 

Beatrice State Home has been 

renamed Beatrice State 

Developmental Center and its 

population has been reduced from 

2300 to 850. All but 250 of an 

original 780 institutionalized 

citizens from Region VI have 

returned to the community—to 

independent living, their family 

homes, nursing homes or ENCOR 

residential settings (where 250 persons are accommodated in the 

17 core residences or 105 ALU's 

throughout the five-county region). It has been estimated that more 

than 350 mentally retarded citizens 

in the region have been helped to 

stay in their homes instead of being sent to the institution, as would 

have been the case ten years ago. 

Despite the many changes, all 

persons interviewed regarding the region's residential services still 

hold to the original, unifying goal of the 1968 Douglas County report: ". . . all will be returned to the 

county (now five counties) for care, 

education and training." As the 

effort continues, ENCOR is 

attempting to solve the following 

problems: 

 Severity of Handicap. Of the 

250 persons still at the institution, 

60 percent are severely and profoundly handicapped. As a 

result, the agency must develop a 

more intensified technology than ever before. 

 Nursing Home Problems. There are 95 persons in the area 

now living in nursing homes who 

need ENCOR residential services.  Community Client Needs. Although much of the emphasis is on deinstitutionalization, there are 

many mentally retarded persons 

already living in the community 

who someday will need residential 

care. Services for these persons 

must be planned and also carried 

out. 

 Ideological Standards. The service system began with a small 

number of persons who believed 

unwaveringly in the value, dignity 

and rights of mentally retarded 

persons. Their high ideological 

standards gave them added 

enthusiasm, energized their efforts 

and inspired their creativity. As new personnel are employed, extra 

effort will be needed to keep the ideology rich. 

 Limited, Unstable Funding. Through the years, the funding from federal, state and county 

sources has always been in a state 

of flux—and always short. There 

have been some increases, but there 

have also been cuts that have 

crippled or killed vital components 

of the service. There have never

been sufficient funds to accomplish 

the goal of the Douglas County plan, and there has never been a 

single, stable source of funding 

from any level of government which is earmarked specifically for 

community residential services for 

retarded citizens. 

 Security for Parents. In the past, 

when parents placed their child in 

an institution, the government 

informally guaranteed that the child 

would be cared for after they died. No such guarantee has been made 

for parents placing their child in this 

community service. This lack of 

security has led some parents to 

attack ENCOR when they are 

forced to choose between it and the 

institution. 

 Largeness. As ENCOR 

becomes larger, there is increasing 

danger that central management will be forced to develop common 

denominator policies that enhance 

one client's life while diminishing 

another's; or rules that can correct 

an inefficient staff member's 

behavior while snuffing out a valuable worker's freedom to create. 

The organization of the 17 clusters 

was a defense against such 

creeping institutionalization. Now, 

as even they get larger, ENCOR 

must continue planning to keep 

each small unit alive, personal and 

at top efficiency. 
Community Residences 

The parents, professionals and 

citizens of eastern Nebraska have 

invested a massive amount of time, 

energy and emotion in an effort to 

provide continuums of residences 

for the handicapped persons in their 

midst. In doing so, they have had to deal, one by one, with hundreds of 

bureaucratic and prejudicial obsta- cles that have appeared in their way. They have learned that society does not take kindly to those who 

attempt to correct or change the practices and beliefs it has been 

institutionalizing for hundreds of 

years. Nevertheless, these people have not wavered from their goal. 

A BOOT CAMP FOR 

COMMUNITY RESIDENTS 

One of the most difficult times in 

the lives of mentally retarded adults 

occurs when they leave the safety 

of a home or institution and move 

into the community on their own. 

Such leaps into independence can 

be disastrous. The many 

complexities that must be 

weathered each day can 

overwhelm the handicapped, break them down, send them fleeing 

back to the "nest." Parents or 

caretakers, who already have a 

tendency to see them as vulnerable, 

are often all too ready to welcome them back, 

Today, many residential service 

experts have learned that the successful movement of retarded 

adults into the community involves 

more than just placing them in suitable quarters. They must be carefully taught to live there, too. 

While normal persons learn them 

automatically, there are hundreds 

of daily living skills that mentally retarded persons must consciously 

struggle to achieve, one by one, before they can "make it" in the 

community. 

Training for Independent Living. Oxnard, California 

If you are retarded, it isn't your 

parents or social worker who talk 

the staff of Training for 

Independent Living (TIL) into 

accepting you in their intense, fast 

moving, residential training 

program. You must convince them. 

Only your own motivation will get you into the program and keep you 

there, give you the strength to work 

70 to 90 hours a week, accomplish 

over 150 separate and distinct 

community living skills and, within 

six to 12 months, make you ready 

and eager to try living in the 

community on your own. 

The TIL program has many of 

the qualities of a military boot 

camp, where raw recruits are taught 

and drilled until numerous basic 

achievements are second nature 

and the trainee becomes hardened 

and skilled, ready to cope with 

what may be a hostile environment. 

TIL instructors are kinder to their 

recruits than drill instructors, but no 

less purposeful in their approach to 

training. Community living is 

rough. Knowing this, they are 

committed to do everything they

ca

in

m what he could 

do

ave been impressed by such 

37 

n to get their trainees ready for it. 

The TIL program was developed 

in 1975 by the Ventura County Association for the Retarded, 

which was well aware of how 

frequently retarded persons from homes and institutions fail to adjust 

to community living. The program utilizes ten apartments that are 

distributed among 100 units on 

four city blocks in Oxnard. Since 

the program is small and personal 

in its approach, only 24 clients are 

 training at any one time. 

However, the size and approach 

does not mean that the program is in any way casual. Far from it. TIL 

is highly detailed in what it 

demands of the client and in what it 

demands of itself—so detailed, in 

fact, that a 365-page manual of training procedures has been 

developed and is subject to 

constant revision. This close attention to detail is woven into every aspect of the program: 

 The Intake Evaluation. A 23-

year-old mentally retarded candidate from an institution, Tom 

Stark, was given an appointment 

for a full day of intake evaluation at 

TIL. In the morning, the would-be trainee attended an orientation 

session. Tom's parents and a social 

worker who accompanied him 

were allowed to attend only this first session. After the orientation, 

Tom was helped to fill out an 

application for training. Although Tom could write only a few words, 

the TIL representative was careful 

never to do for hi

 for himself. 

Following the completion of 

the application, Torn was given a 

thorough interview. At this time, 

a most important question was 

raised: "Why are you here?" 

Although Tom did not know 

it, the interviewer would not

h
Community Residences 

answers as "My mother thought I 

should come" or "My social 

worker brought me." Instead, the 

interviewer listened for the hopes 

and desires of Tom himself. When 

he began to tell the interviewer how 

much he wanted to live alone in the 

community, the interviewer 

listened with interest. 

The candidate spent many halfhour periods demonstrating what 

he already knew about bed making, 

vacuuming a rug, preparing a lunch, operating, a can opener, using a stove, washing dishes, calling 

people on a telephone, telling time, making change and planning a 

menu. Since he was not expected 

to do all these tasks, he was helped 

by the evaluator—but not until he 

did as much as possible all by 

himself. 

When the day came to a close, 

Tom was thanked for coming and 

was told that a letter of acceptance or non-acceptance would be 

mailed to him within two weeks. 

Tom Stark left TIL totally 

exhausted. 

 Acceptance. As promised, a personal letter was sent to Tom—

carbon copies went to his parents and social worker—stating that he was accepted on the conditions that 

he (1) be enrolled in a day 

program; (2) make application for a 

valid California I.D. card; (3) notify 

the Post Office and the Social 

Security Office of his change of 

address; (4) pay a specified amount of money each month for training; 

(5) be aware that his continuation in 

the program depended on his 

motivation and progress; (6) be 

prepared to enter into a contract 

with TIL that would be thoroughly 

explained to him; and (7) notify 

TIL within ten days if he chose to 

come for training. 

Had Tom received a letter of 

non-acceptance, it would have 

been just as exact, giving the 

precise reasons why he had not been accepted. 

 The Contract. Tom telephoned TIL immediately, saying that he 

wanted to come and that he would 

do all the things outlined in the 

letter. He then accepted an 

invitation to meet with a future 

trainer who would read and discuss 

a ten-point contract with him. 

The contract dealt with the transitional nature of his stay, his attendance at monthly "staffing," his 

apartment and roommate assignments, training session hours, visitors' rules, the monthly fee to be paid, the need for a day program (in Tom's case, he would be attending a community vocational training 

program), the equipment he would 

be issued, and the sharing of cost 

for food, cleaning supplies and 

utilities. 

When the contract points were 

clear, Tom and the trainer both 

signed the contract. The date for his 

entry into training was set. 

 The Training Progression. Tom 

is now in Phase one, the most 

intensive of three training phases. While in this phase, he must stay with a live-in trainer and two 

roommates. He attends the 

vocational workshop during the 

day; his training at TIL takes place 

every evening from 5 to 9 on week 

nights and from 9 a.m. to 3 p.m. on 

Saturdays. During Phase One; he 

attends small group training sessions and receives individual 

tutoring until he can accomplish 148 different community living tasks in ten categories: meal preparation, money management, housekeeping, shopping, 

appliances, interpersonal relationships, communications, transportation, personal care and safety. 

When the required tasks are 

accomplished, Tom will begin 

Phase Two. He will move into 

another apartment with roommates 

and no live-in trainer. His training 

activities will include more solo 

tasks, including assignments in the community. 

When Tom enters Phase Three, 

he will be making "a trial run for 

independent living." He will 

remain in the same apartment and 

carry out tasks on his own initiative, 

with staff checks being run on him only to see if he is. "making it" (e.g., paying his bills, eating properly, keeping his apartment clean, doing 

his laundry, using community 

transportation properly). In Phase Three, much of Tom's training will 

consist of in-the-community 

seminars on such subjects as com- parison shopping and leasing an apartment. At this time, he will be 

encouraged to purchase many of 

the items he will need when he 

finally signs a lease and moves into 

his own apartment. 

 Recreation and Leisure. Although the basic training 

categories are heavily structured, recreation and leisure time is free of 

performance and evaluations and 

check lists. Instead, it is seen as a 

time to break free of all the 

schedules and rules of the week. 

Nevertheless, recreation and leisure 

time is no less active. In addition to 

the usual activities that agencies sponsor for the handicapped, there 

are many things that trainees can do 

in the community, things that range 

from attending a flea market to 

going to a symphony concert. 

Trainees are kept posted on such 

events by the TIL staff. 

 Moving Away. If all goes well, the day will come when Tom will 

sign a lease for his own apartment, take his own furnishings and move 

away from TIL. However, the 

association does not end there. The 

staff will continue to make followup visits to his new home and Tom 

can always return for assistance 

when his checkbook doesn't 

balance or when he's attempting to transfer his cooking skills from an 

electric stove to a gas stove. Tom 

will also be invited to special 

picnics and parties attended by both 

the present trainees and other 

graduates. And he will probably be asked _to give pep talks to the new 

crop of trainees, just as others did 

with his group. 

Eventually, Torn may lessen 

even these informal ties. As one 

TIL trainer describes it: 

It isn't so much that we phase 

them out. Instead, they phase 

us out. They begin to say, 

"Come over and don't make a 

report on me. Leave your 

checklists at home. Just be my 

friend."
Community Residences 

And even this may change. It has 

been documented repeatedly how 

people like Tom Stark, trained to 

deal with a new world, find in that 

world many more exciting things 

to do than in the old world of the 

human service systems. When and 

if that day comes, Tom Stark will 

sever all contacts with TIL. But 

that's not bad. As far as TIL is 

concerned, it could be _the best 

thing that ever happened in his life. 

THE INSTITUTION THAT 

BECAME A COMMUNITY 

SYSTEM 

In the early 1970's, many voices in the community decried the "warehousing" of mentally retarded per- sons in institutions and called for 

"deinstitutionalization" instead. But 

there was something that people in 

the community did not do. They failed to develop systems of 

residences that could replace the 

institution. 

Many community groups, of 

course, did develop a few homes in their neighborhoods. Some of these 

homes even became "showcases" 

and the groups pointed with pride at what they had created. Then they stopped. They dabbled with 

providing residences for, say, 30 mentally retarded citizens, when 

they should have been organizing for 300. 

Meanwhile, the institutions— 

receiving tremendous pressure 

from governments, courts, news 

media and citizens groups—

considered giving up their residents. 

However, there was one big 

problem: There simply weren't 

enough community homes to 

accommodate the residents. 

Macomb-Oakland Regional 

Center (MORC), Mt. Clemens, 

Michigan - 

In 1971, the State of Michigan planned to build five new 

institutions for mentally retarded persons. Two were scheduled for 

Macomb and Oakland Counties 

(Population: 1,760,000), just north of Detroit. The Macomb-Oakland 

Regional Center (MORC) was 

created to develop the institutions. 

A superintendent and a skeleton 

staff were hired to develop the first 

650-bed campus; however, the 

new superintendent and his staff 

made a bold request. They asked 

for permission to put the building 

plans on "hold" until they saw what 

residences could be developed in the community. After an initial 

survey, it became clear that 

sufficient community residences 

were not available and wouldn't be 

for a long time. So MORC began 

developing a community residence 

system all by itself. 

Today, the institution is 

organized into a series of 

community residences, each effort 

energized by the same unifying 

goal: to prove that Macomb and 

Oakland Counties do not need selfcontained, central institutions. 

In an effort to accommodate 

everyone in the community who 

wanted to take an active part in 

keeping the handicapped out of the institution, MORC came up with 

two kinds of community 

residences, each with its own 

offshoot: 

 Community Training Homes 

(CTH). Although these homes are 

sometimes viewed as ''foster 

homes," they are really more than 

that. They not only provide the 

usual room, board and supervision, 

but offer intensive developmental 

training as well. At present, there 

are 250 developmentally disabled 

persons who live in these homes 

with 150 families throughout the region. 

Occasionally, a CTH family will 

express a desire to do more. Rather 

than just assist mentally retarded 

persons on a part-time basis, the 

family is willing to work full-time 

and provide even more intensive 

services. To accommodate such 

families, MORC has established 

Alternative Family Residences 

(AFR). These residences provide intensive in-home training for not 

more than four persons with more 

extreme handicapping conditions. There are, at present, four AFR's in 

operation. 

 Group Homes. Some 

community residents who want to 

help mentally retarded persons 

would rather do so on a corporate basis rather than on an in-thefamily basis. For such residences, 

MORC has established a series of 

group homes, each of which 

operates under its own corporate 

structure, governing board of neighborhood professionals and 

nonprofessionals, and three shifts 

of residence managers who do not 

live in the homes. There are now 

30 group homes serving 250 

developmentally disabled persons in the area. Although the homes 

have a maximum limit of six 

residents, three of the early units (organized when the program was 

still in its infancy) still contain from 

14 to 18 residents. However, since 

MORC believes that these larger units tend to take on the characteristics of institutions, efforts are 

being made to split them into smaller groupings. 

Here, too, there is a creative offshoot. Recently, five group homes 

met the Federal Government's 

Intermediate Care Facilities 

standards and, as a result, now 

receive HEW funding. These 

homes—known as Alternative 

Intermediate Services (AIS)—also 

accommodate no more than six 

residents, but they do provide services for persons with more 

intense handicapping conditions. A handicapped person is never 

immediately accepted for a MORC 

residence as long as that person has a home in the community. Before 

39 
Community Residences 

acceptance is considered, parents or 

relatives are trained within the 

home to help the client. MORC is 

prepared to move staff members 

into the home to help the family 

solve the problems calling for the 

client's removal; if the situation 

calls for 24-hour service, then 

MORC will supply that, too. As a 

result of such services, half of the 

families serviced develop to the 

point where they are willing to 

keep the handicapped relative in his 

or her home. If the situation 

remains unchanged, of course, 

other residential arrangements are 

made for the handicapped person. 

Despite the efforts of MORC 

staff members to phase out 

institutionalization, the state 

nevertheless mandated four years ago that a 90-bed institutional unit 

be constructed. The mandate, 

however, turned out to be more of a 

victory than a defeat for MORC. 

The "institution" consists of many 

small, duplex-like housing units, 

with each unit housing eight residents (four on each side of the 

duplex). The units are small and 

homelike, which, MORC believes, 

is all to the good; but they are all 

situated on the same site and that 

smacks of "institution." Nevertheless, MORC is managing to live with the situation, since the facility is used only as a depot for bringing the last 600 Macomb and Oakland 

County citizens out of institutions 

across the state and eventually 

placing them in community 

residences. In the 18 months that 

the 90-bed unit has been operating, 

only two persons have been 

admitted from the community. 

Although MORC's case load is 

constantly changing, with some 

persons being admitted to the 

program and others being phased 

out, there are approximately 700 

clients being served at all times. 

Eighty percent are persons with 

severely and profoundly handicapping conditions. 

To deal with such a case load, 

MORC has organized a number of 

divisions which perform specific 

functions in the setting up of each 

new community residence. Each 

division carries out a highly 

detailed checklist of functions, each 

of which must be carried out 

satisfactorily before a client is 

admitted. To make matters even 

more complicated, new tasks are 

being added continuously. Such 

meticulous planning, MORC 

believes, is necessary if the community wishes to develop a no- nonsense residential system that 

will serve all handicapped persons, 

not just the chosen few. 

 The Recruitment Division has 

one single goal: to give the 

program the maximum publicity it 

deserves. "We are the ones who 

make the telephone ring," said the division director. They are on the 

phone constantly, planning and 

carrying out a thorough campaign of advertisements and presentations in newspapers and on TV and 

radio. They also set up speaking engagements in all towns of the 

two-county region. 

 The Home Finders Division follows up on all likely prospects for 

community residences. Some 

members of the division interview 

families, screen them in or out, 

check letters of reference, help 

them qualify for licensing and arrange for trial visits of 

handicapped persons in the home. 

Other members are experts in 

developing neighborhood, nonprofit corporations. This includes 

finding investors, organizing local governing boards and recruiting 

lawyers to draw up corporation 

papers. When all the details are 

settled, MORC "vendorizes" the 

group home and provides for the 

placement of residents. 

 The Case Manager Division

takes over after the Home Finders 

have set up the home. The 

members of this division receive 

written reports (on the status of 

homes, problems, etc.) and conduct 

monthly meetings in the home. 

They coordinate the development 

of the individual program plan, as 

well as its quarterly and annual 

review. They are also available to 

deal with any critical situation that 

may arise. 

 The Program Review 

Committee handles the admission 

of clients. This committee is 

composed of professionals from 

generic agencies, MORC staff 

members and parents of 

handicapped children in the community. It meets twice a month and 

considers an average of 15 referrals 

at each meeting. Of the 30 referrals 

received each month, only four are finally accepted for MORC 

residential services. The others are 

carefully assisted into other more 

appropriate generic service 

programs or into inhome training. 

 The Professional Consultant 

Staff consists of physicians, dentists, nurses and physical, occupational 

and speech therapists. The staff 

treats clients only as a last resort; 

instead, it enlists the services of 

other professionals and agencies in the communities. If no such 

agencies exist, the staff works to 

develop them. 

MORC's training programs 

never stop. All home managers 

receive a thorough initial 

training that consists of an 

orientation on mental retardation; 
Community Residences 

maintaining healthy environments; 

providing emergency care; fire and 

safety considerations; 

administrative responsibilities; the 

elements of programming; and the principles of normalization. Each 

training unit requires 

approximately three hours to 

complete, and continuing 

education takes place at the rate of 

two hours a month. 

MORC believes that its 

community residential system has 

probably not been duplicated 

elsewhere. One staff member 

explained: "We built this system 

for two heavily populated counties 

just north of Detroit. It's for the 

specific needs of these citizens 

only." However, this hustling organization has developed a series 

of principles that other 

communities may wish to 

consider: 

"There is no such thing as a permanent placement." All of society 

out grows certain facilities. It is 

expected that mentally retarded 

persons will do the same. 

"There will never be a complete 

service system." Something will always be lacking. There will never 

be enough varieties in residences. 

"Our workers are expected to 

work hard and burn out." MORC 

accepts the fact that it has a 25 

percent employee turnover rate and 

that the average stay is only three 

years. It is what happens to .the 

workers while they are on the job 

that is important: few staff 

members come to MORC with upto-date attitudes toward retarded 

persons, but most leave with a 

healthy philosophy. Many leave to 

take much better positions in the field of mental retardation; indeed, 

there are strategic positions 

throughout the nation which are 

held by alumni of MORC. One 

staff member put it this way: 

"MORC is seen as a good place to 

move from." 

"Developing parent trust is a 

must." Communication with 

parents through newsletters and 

personal conversations is being constantly improved. Parents must 

approve the home where their child 

is placed. Once the child is in the 

home, parents are able to contact 

MORC 24 hours a day. 

"When a community home 

placement breaks down, we must 

have alternatives ready other than 

the institution." MORC plans for a 

number of alternative options. In 

fact, the organization seems willing 

to do almost anything to keep a retarded person out of the 

institution. 

In spite of all the ingenious organizational creations and the 

fresh principles that motivate them, 

MORC staff members admit that 

they still have an uphill battle to fight. More and more people with retarded children are moving into 

Macomb and Oakland Counties 

from the Detroit area. One reason 

for this influx is certainly due to the 

fact that MORC's achievements 

have received considerable 

publicity, with the result that many 

families have moved to the area for 

the express purpose of securing services. In addition, 150 

developmentally disabled persons still live in nursing homes, and these people—according to MORC standards—must be 

relocated. 

Nevertheless, MORC is an 

agency that is struggling valiantly 

to deal with the residential needs of 

all retarded persons in the region. 

MORC definitely knows where 

these people are and what needs to 

be done, and is committed to the 

development of a system that is comprehensive. Although MORC 

is well on its way to reaching its objectives, it remains to be seen just 

how far the organization will 

actually go. This, however, may be 

significant: MORC is already 

thinking about how the 90-bed unit 

with its central heating system and swimming pool can be used for 

something that is definitely non-. 

institutional. 

A RURAL COUNTY TAKES 

CARE OF ITS OWN 

Many Americans cherish living in 

a rural setting and wouldn't have it 

any other way. Mentally retarded 

citizens, however, often have no 

choice as to where they will live. 

They are forced to move to the 

cities simply because the rural areas 

cannot provide the special 

programs they need. 

Until recently, this forced move 

to the cities was the fate of most 

mentally retarded Americans in 

search of special programs and 

services. Today, a growing number 

of rural communities are 

reconsidering the many complex questions that pertain to helping the handicapped. They are learning 

that although most technical skills 

and standards are developed in 

urban settings, there is no reason 

why rural communities can't have 

their own programs, too. 

Tuolumne County Independent Living Project (TCILP), 

Jamestown, California 

"We who live in these mountains 

are different. We like the way we are and we don't intend to change. But something aches inside when 

our handicapped children must 

move to the valley for special programs. They get help, but 

something is lost in the process." 

So spoke the mother of a teenage 

son with cerebral palsy and mental 

retardation. To enroll her son in 

programs for persons mentally retarded outside of her mountain 

community was somehow a surrender. She, like many others in 

Tuolumne County, felt deeply that 

it was the community's moral duty 

to take care of its own. The end 

result of this community ethic: a local residential program that is 

remarkable because of its 

simplicity, naturalness and low cost. 

Four apartments for 

developmentally disabled persons are interspersed in a recently 

constructed 44-unit complex in this 

mountain town of 950 persons. 

Nine handicapped individuals—

from 19 to 32 years of age—

make their homes in these 

apartments. Three of the men live 

41 
Community Residences 

semi-independently in a threebedroom apartment; three women 

have a similar arrangement; two 

men with more severe handicaps 

live in the same apartment with the 

project's salaried house manager; 

and one person lives independently 

in a smaller apartment. 

During the day, all of the handicapped residents attend a work 

activities center two miles south of 

Jamestown. In the evenings and 

weekends, they are members of the 

community. They interact with 

other residents on the street, go 

bowling, attend movies and eat in 

local restaurants. They are invited 

for dinner in other homes in the 

neighborhood; and, in the case of 

two women who have learned to 

cook reasonably well, entertain 

townspeople in their apartments. 

The handicapped men also 

accompany neighbors on fishing 

trips to the many nearby mountain 

streams. Although most of the interactions are spontaneous and informal, both the clients and the project's 

volunteers have sponsored special 

pot-luck dinners for selected persons 

in the community who might be 

interested in regular friend-to-friend 

relationships. 

The handicapped tenants are so 

well accepted as neighbors that the 

manager of the apartment complex 

has indicated that he would like to 

rent more units to such persons. The 

offer has been declined with thanks, 

however, because too many units 

for handicapped persons in the same 

complex might possibly adversely 

affect the excellent relationships that 

are now being established. 

Tuolumne County's belief that it 

could take care of its own is neither 

an idle boast nor a case of wishful 

thinking. The residential program is 

remarkably self-sufficient: 

 TCLIP is financed, for the most 

part, by the handicapped resident's 

Supplementary Security Income 

(SSI) checks. Each client pays a 

share of the rent, the utilities and 

groceries and the salary of the house 

manager. After all these costs have 

been deducted, each client has 

money left over for personal use. 

 No licenses are needed for the 

operation of the program since the 

clients pay their own rent and sign 

their own apartment leases. 

 The project is administered by a non-profit corporation of volunteers. 

The corporation's board consists of 

all of the handicapped residents, one 

of the County Supervisors, the 

County Assessor, a parent of a mentally retarded child, the director of 

the work activities center and a 

representative of the Valley 

Mountain Regional Center 

(VMRC) which covers three 

mountain and two valley 

counties—one of 21 state mandated 

regions—with headquarters in 

Stockton. A volunteer serves as the 

project's bookkeeper; other 

volunteers have donated furniture 

which was refinished at the work 

activity center by the clients 

themselves. 

 The project has received support from the Catholic Charities SemiIndependent Living Project (a 

"Vendorized" program of VMRC) 

to pay for the relief staff on the 

house manager's days off. VMRC 

also pays for the clients' 

transportation to and from the work 

activity center and provides a 

community worker who 

coordinates individual program 

planning and remains on call for 

emergency assistance. This support, 

however, is minimal compared to 

the responsibility undertaken by the 

clients themselves. 

Since the program began in 1976, 

the residents of Tuolumne County 

have discovered that six citizens live 

in institutions. Although these 

citizens have been institutionalized 

for some time and are severely and 

profoundly handicapped, TCILP 

has started to plan for the development of a group home for them in 

the community. Not only is TCILP 

determined to bring all institutionalized persons home, it also intends to 

prevent such institutionalization 

from happening again. 

While the county continues to 

complete its own residential programs for handicapped persons, the 

larger VMRC is well on its way 

toward developing a computerbased program of individualized 

residential services for every 

developmentally disabled person in 

the five-county area (which has a 

population of slightly over 600,000). 

VMRC is "vendorizing" many nonprofit organizations like Catholic 

Charities, which, in the past year 

alone, has opened 45 new 

apartment units for handicapped 

persons. It's also working closely 

with Stockton State Hospital, 

transferring the mentally retarded 

residents there to community 

settings. 

The state mandated monitoring 

agency for the region—Area VI 

Developmental Disabilities Board 

—has announced that a continuum 

of community residences is its top 

priority. In addition, the special 

education and psychology 

departments of the College of the 

Pacific in Stockton have contributed 

generously of their expertise to the community residential effort. 

Such large-scale, region-wide 

efforts are highly beneficial, of 

course, but they can pose a threat to small, indigenous community projects like TCILP. What are the chances of TCILP one day being 

swallowed up by the five-county 

organization? The director of 

VMRC has this to say: "Such 

beautifully self-reliant programs 

must be protected and supported by 

the Valley Mountain Regional 

Center. If everybody did what 

Tuolumne County is doing, and if 

everybody kept improving the 

services, the day would come when 

VMRC would no longer be needed. 

"In the meantime, we must continue to organize residential services 

for the many other citizens who 

need it, but we must do it so the 

larger five-county programs and the 

smaller, community-initiated 

programs coexist. Furthermore, we 

know only too well that the urban 

valley culture and the mountain 

culture are remarkably different and 

we are committed to protecting and 

reinforcing the integrity of both 

groups."
Community Residences 

Photo by Tuolumne County Independent 

Living Project 

43 
Work 
Work 

THE PUBLIC SERVICE 

CREWS OF GREATER 

LOS ANGELES 

Competitive employment has been 

a major goal in preparing mentally 

retarded persons for adulthood. 

With many new training 

technologies now available, more 

handicapped citizens' will be 

gainfully employed than ever 

before. 

But what about retarded 

individuals who can't compete? 

Must all of their working lives be 

spent at a table in a sheltered 

workshop, performing such 

undemanding tasks as putting 

picnic spoons in plastic bags? A 

workshop trainer on the West 

Coast hopes not: 

I've worked with most of these 

adults for three years now, and I 

can tell you some of them are 

bored. They've learned to sit for 

long periods, look appropriate, 

increase their production and 

not complain. But I can sense 

that people like Bill and Maggie 

(nodding toward two persons 

packaging faucet washers) find 

no challenge in their work 

anymore. I suppose neither will 

be able to take the giant step into 

the competitive market, but I 

feel they could do more than 

they are doing now. 

Community Redevelopment, Center in Mental Retardation, 

California State University, Los 

Angeles, California. 

Eric Rodriguez loves going to 

work. On the day he was 

interviewed, he was up at 6 a.m. 

and on a city bus by 6:20. During 

the next 90 minutes, he transferred 

twice, walked five blocks and 

arrived at his current job ten minutes early. While saying good 

morning to the other members of 

the six- man crew, Eric walked into 

a portable shed, put on his hard hat, 

strapped on his tool belt, opened his 

personal tool box and filled his 

holsters with the tools he needed 

for the day's group effort, 

constructing a playground for 

children. The only things that could 

keep Eric from such steady public 

works labor would be something 

like a bus strike or severe illness. 

Even the fact that he can read 

neither numbers nor street signs 

and does not receive a competitive 

wage has not kept him from this 

job. 

On this particular day, he and the 

other members of the crew—all 

of them handicapped—constructed 

45 
Work 

wooden forms, shoveled sand and 

worked with wet cement. But that's 

only a small part of the crew's repertoire. In the past 16-months, this 

work crew—and four more like 

it—have constructed sheds, built 

wheelchair ramps, painted interiors 

and exteriors of buildings (mostly 

public schools and private 

rehabilitation facilities) and 

remodeled restrooms for handicapped persons. 

Eric is now 22. Unlike many 

young, mentally retarded adults, he 

feels very much like a creative adult 

and going to work is sheer fun to 

him. 

The work crews came into being 

in June, 1975, when a small grant 

entitled "Community Redevelopment: An Alternative to 

Workshops" was awarded to 

California State University by the 

Region IX Developmental 

Disabilities Office. The project called for the development of small 

close knit work crews, each containing five mentally retarded adults 

who previously had been evaluated 

as "not feasible for competitive 

employment." The sixth member of 

each crew was a non-handicapped 

"lead worker" who possessed 

previous experience as either a 

construction worker or a college 

industrial arts student. 

The project has been so successful in its community service efforts 

that it has been continued on its own 

after the grant expired in the 

Summer of 1977. Costs are 

remarkably low: the lead worker is 

salaried by the Comprehensive 

Employment Training Act (CETA), 

while the handicapped crew 

members live off their 

Supplemental Security Incomes 

(SSI) of $296 per month, as well as 

a monthly $60 payment from the 

local California Regional Center. (If 

they received any more payments, 

they would no longer qualify for 

SSI.) The organization being served 

is expected to pay for the materials 

and the expendable tools only. 

Some striking, principles have 

emerged from the operation of this 

pioneering public works program: 

 Competitive employment principles are diminished. Money is not a 

primary motivator. Nor is 

production tempo. "We don't care if 

a project takes one week or three 

weeks," said one lead worker. 

"What counts is that the workers' 

interest and enthusiasm remain high 

and that they observe all standard 

safety procedures. 

 Personal value comes from 

helping others in dignified ways.

There's nothing "devalued" about 

these workers. They are helping to 

make the world a better place in 

which to live and they know it. 

Their heightened sense of value is 

even carried into their homes. One 

lead worker explained: Some of the fellows take home 

blueprints and spread them out 

on the kitchen table to show 

their dads what they're doing. 

They may not be able to read 

the words, but they can point to 

the various components and 

describe them. For some of the 

workers, this has been the first 

time their fathers ever took an 

interest in anything they did. 

The project director pointed out 

that "we've learned never to underestimate the personal values that 

come from wearing a tool belt, a 

hard hat and having one's own tool 

box. These items tell others that a 

guy stands ready to perform nononsense labor that can even be 

dangerous." 

 There can be, power in creative comradeships. Community 

Redevelopment has borrowed and 

modified "the peer group principle" 

developed by Emanuel Chigier of 

Israel. One leader explained the 

principle as he saw it: None of these projects could 

ever be completed by any of 

the workers alone, but together 

they become a remarkably 

powerful construction force. 

That is why we emphasize the 

fact that they belong to a 

damned good group. We train 

together, we work together and 

we even recreate as a group. 

 Independent living skills are relevancy-based. There are no 

pre-determined courses of study for 

the workers. Instead, the projects 

themselves dictate what the workers 

must learn. For example, travel 

training must take place each time a 

crew moves to a new job location. 

Each worker must learn new bus 

routes and identifiable landmarks 

between his home and his job. 

Learning to write or print their 

names, addresses and telephone 

numbers becomes critical. 

Another immediate necessity is 

the budgeting, saving and spending 

of money, and the handicapped 

workers become highly teachable 

regarding money management. 

Even when they go together to 

restaurants, on picnics or on 

weekend camping trips, every detail 

of such ventures provides an agenda 

for learning to live a richer, more 

independent life. One more 

example: The crew was 

refurbishing a large house for a rehabilitation facility and it was decided 

that the kitchen would be completed 

first. Then, each man took his turn 

planning, shopping and preparing 

the noon meal for the entire crew. 

The supervision of this training 

diminished as each worker became 

a capable cook. 

 Alliances between mental retardation professionals and industrial 

professionals are highly valuable. 

Formal dialogues and affiliations 

with agencies and departments 

having different perspectives have 

enhanced the creativity of the 

project. For example, a close 

working relationship has taken place 

between California State 

University's Center in Mental 

Retardation and the Industrial 

Studies Department. As a result, the 

industrial arts personnel have 

become avid contributors of 

technical advice on construction 

projects; they spend long hours 

drawing blueprints that are easy to 

understand and carry out, and they 

help lead workers develop instructional methods. Some industrial arts 

students have become so interested
Work 

that they have joined the project as 

lead workers themselves. 

From innovative principles like 

these, one begins to see that if a 

mentally retarded person cannot 

successfully compete for a job, all is 

not lost. Many opportunities still 

exist for them to join with comrades 

in renewing and redeveloping parts 

of their community. And as the 

community gains, so do each of the 

handicapped workers who receive 

tremendous dignity and status from 

their work. 

One of the project directors feels 

this so strongly that he has 

developed an attractive national 

perspective on such community 

service efforts: 

Right now, the Federal Government is trying to develop a welfare reform program that will 

separate those who can work 

from those who cannot. And 

would you believe that our 

handicapped workers are seen by 

the government as being among 

those who cannot work? What a 

shame! These men are working 

now. They know they have something rich to contribute to 

society. They feel it so strongly 

that they often come to work sick 

and we have to send them home. 

It would be sad if these men are 

ever seen as non-productive 

citizens and are sent home to live 

off the dole and watch TV all day . 

. . Just last week, I was in a 

subway station on the East Coast 

and it was in horrible disrepair. It 

made me want to bring our work 

crews to the city to begin working 

on these stations one by one . . . 

Wherever I go, I see hundreds of 

public works projects that need to 

be carried out and I know of 

many retarded persons who could 

be tremendous forces in community redevelopment if we 

organized them right and valued 

them for the no-nonsense 

contributions they could make to 

the nation. 

JOB TRAINING THAT 

INDUSTRY UNDERSTANDS 

Until just recently, mentally retarded 

citizens had no place in the nation's 

labor force. There were exceptions, 

of course, where "charitable" 

employers carried handicapped 

employees on the payroll—but they 

did it more from feelings of 

sympathy and guilt than from the 

dictates of sound business practices. 

Today, however, many mentally 

retarded persons are working side 

by side with non-handicapped 

employees. Management is learning 

that, far from being merely a 

sympathetic gesture, the 

employment of mentally retarded 

persons can be a sound business 

strategy. 

No one knows how many 

retarded persons will eventually fill 

competitive job placements in 

industry, but if the diverse types of new-breed vocational trainers have 

anything to say about it, thousands 

of handicapped persons will be 

accepted as members of our 

country's labor force. 

Training Alternatives for Living and 

Learning (TALL), Kansas City, Missouri 

When a placement worker from 

this small, hustling, avant-garde, 

vocational training unit approaches 

an employer to discuss the hiring of 

a TALL client for a specific job 

opening, there's no defensiveness in 

his approach. There's no gingerly 

holding of hat in hand, nor saintly 

expression, nor enticing the 

employer to feel sorry for the client. 

Instead, a hard-nosed business deal 

is offered. 

The placement worker goes over 

the employer's detailed list of skill 

requirements and may even add a 

few more requirements from the 

Dictionary of Occupational Titles 

(DOT: the nationally accepted 

industrial reference for detailed skills, 

produced by the U.S. Department of 

Labor). Then, component by 

component, the TALL 

representative goes over the 

handicapped person's profile with 

the employer, showing that this 

potential worker can meet 

every employer and DOT 

requirement. TALL stands ready
Work 

to help, if need be. For example, 

even if the client has severe physical 

limitations—and most clients do—

an industrial engineer from TALL 

will attach prosthetic modifications, 

at TALL's expense—to the 

equipment the handicapped person 

will use. 

After such discussions have concluded, the employer is often 

amazed because the placement 

worker—who was expected to be a 

"social service type"—turned out to 

be a no-nonsense businessman who 

talked the employer's industrial 

language. And, by skillfully 

matching the employer's data with 

the client's profile, the placement 

worker is frequently able to 

convince the employer that what his 

company stands to gain is a good, 

productive worker. 

A TALL trainee learns to operate a 

typewriter using a breath device. 

TALL's placement procedures 

are admittedly extraordinary. And 

so is the systematic process used in 

getting a handicapped client ready 

for employment. The process 

contains the following components: 

 Ample time is allowed during 

the application period for the agency 

and the trainee candidate to size 

each other up. The candidate's 

records from other agencies are 

released and read. Discussions take 

place, with the candidate having the 

opportunity to ask as many 

questions as he or she wishes. The 

goal, in TALL's scheme of things, is 

not to screen for the cream of the 

crop, since all clients have severe 

handicapped conditions (75 percent 

are mentally retarded) and all have 

failed in other vocational training 

programs. Instead, TALL workers 

look for a person with dormant 

possibilities and with enough 

motivation to try one more time to 

get a job in industry. 

 On Commitment Day, the candidate meets with TALL's 

training director and two prospective 

trainers in an intensive closed-door 

session. In this meeting, it's made 

clear just what stringent training 

components the candidate is 

expected to undergo. It's also made 

clear that the trainers are vigorously 

committed to discovering and 

reinforcing every strength—not 

weakness—in the handicapped 

person which could lead to a full 

time job in regular industry. Finally, 

the candidate signs a statement of 

intent that he will adhere to all rules 

and policies, including a full 

Monday-through-Thursday work 

week, with the only acceptable 

excuses for absence or tardiness 

being illness or death in the family. 

 Immediately after Commitment Day, an intense, three-phase assessment process begins—not to exceed 

two weeks, nor be less than 20 

hours—that covers 170 ordinary living skills, 144 work behaviors and 

not less than 74 work-related 

physical skills. When the 

assessment is completed, TALL 

professionals have a lengthy, highly 

detailed list of the client's skills. 

 Once all the assessment information is in hand, a strategy meeting 

takes place, at which the client, training director and two assigned directors go over all the client's strengths. 

Then, together, the handicapped 

person and the TALL trainers plan 

specific training milestones that 

must be achieved in the personal, 

industrial and physical areas. This is 

the first of many strategy sessions. 

Regular sessions are held at least 

once a month, and client or trainer 

can call for an emergency meeting 

at any time. 

 At this point, the client becomes involved in an on-the-wall, visual 

charting process. His name is 

entered on a large gridded chart with 

the names of other trainees. This 

easy-to-read chart—which covers 

an office wall, from ceiling to 

floor—records each client's progress 

through seven basic training phases 

and 20 sub-phases. The client's 

movement is charted through 

assessment, basic self-care, prevocational skills, career exploration, 

skill training for a specific job (DOT 

number and description are listed) 

and hiring by a company. The chart 

makes it possible for the client and 

trainers to see where each handicapped person is in his or her 

training program at any given time. 

It also dramatizes the fact that within 

four month's time, a handicapped 

person is expected to have moved 

toward a specific job in a specific 

industry. 

 If necessary, the industrial machinery can be modified, 

enabling a client with severe 

handicaps to meet regular 

production standards. TALL has 

available a full-time industrial 

engineer who is prepared to develop 

special machine controls activated 

by tongue, breath, eye contact, light, 

sound, body heat or proximity, 

touch and slight body movements. 

Such prosthetic modifications can 

be easily attached and removed 

from all kinds of machines on an 

assembly line. However, such 

adaptions are constructed only after 

the handicapped person's own skills 

are at a maximum. 

Although the TALL program has 

been in operation for less than a year, 

it has already served 46 

handicapped clients. Twelve are 

working full time on assembly lines, 

in food service systems and in 

clerical positions. Twenty are now 

being groomed for specific 

industrial positions and the 

remainder are in the early phases of 

training. There have been six failures: 

one client simply could not keep up
Work 

mentally and physically; two moved 

to other areas of the country; and 

three came to the realization that if 

they were employed, they would lose 

their monthly SSI checks and thus 

chose not to continue training. 

This new, lively vocational effort 

trains only severely handicapped 

persons who heretofore were never 

able to qualify for full time jobs in 

regular industry. Far from dismissing 

the program, tough-minded businessmen from the greater Kansas City 

area are highly interested in what is 

being accomplished. For example, 

Kansas City officials of Montgomery 

Ward made on-site visits to the 

TALL training location. They 

observed the operation in action and 

looked closely at the systematically 

recorded data on clients. They were 

so impressed by what they saw that 

they gave TALL the complete 

encyclopedia of detailed job 

descriptions for all positions in the 

Montgomery Ward industry, stating 

that they were willing to consider 

handicapped clients who could meet 

specific job descriptions. 

This vocational training program is 

based so strongly in the principles and language of regular industry that 

one industrial expert predicted the 

day would come when larger industries will develop such vocational 

training systems within their own 

corporations. If they do, they stand to 

gain enthusiastic, stable, regular 

attending, skilled employees who 

heretofore have been passed over by 

the nation's industry. 

IN THE REAL MARKET 

PLACE 

There was a time, not so very long 

ago, when many industrial training 

programs for mentally retarded adults 

were conducted in simulated work 

settings that were located apart from 

the real world of work. The programs 

were usually well-meaning and 

sometimes beneficial. However, they 

had one big drawback: The step from 

artificial training program to real 

industry was so great that even so-called normal persons would have had a hard time making it. Today, industrial trainers have begun to help retarded 

persons bridge this frustrating gap between training and employment by bringing, the vocational training program as close as possible to the practices and locations of regular industry. 

49 
Work 

The Donut Shop

, La Mesa, 

California 

"Everything is real here—the cash 

register, the display cases, the tables 

and chairs, the baking equipment in the back. But most important of all, 

the customers and the employees 

are real, too." So spoke Al Filipponi, 

creator and manager of a popular 

little bakery, located in the center of 

downtown La Mesa. His penchant 

for realness, however, stems not 

only from the fact that the Donut 

Shop is an attractive thriving 

business; it also comes from his 

determination to make the shop an 

industrial training center where 

mentally retarded trainees are 

integrated with regular employees 

in a genuine marketplace effort. 

It all began two and a-half years 

ago when Filipponi, the father of an 

18-year-old, mentally retarded 

daughter, left his position as a successful manager of a life insurance 

business and began to create his 

own conception of a successful 

work training program for mentally 

retarded adults. It was a make-orbreak effort for him, since he 

had invested all of his funds in the 

project and was working on it full 

time. 

Today, the Donut Shop is a 

unique success in more ways than 

one. The shop produces and sells 

many different kinds of donuts and 

pastries . . . there is a pleasant area 

containing tables and chairs where 

customers can eat baked goods and 

drink coffee . . . and the store is 

open from 5:30 a.m. until 6 p.m., 

while the bakery operations begin 

at 2 p.m. and end at 11 p.m. The business employs three bakers, five salespersons, an 

administrator and a vocational 

teacher. An average of 12 mentally 

retarded vocational trainees work 

side by side with the regular employees in this unique, learn-by- doing enterprise. A small house 

behind the Donut Shop has been converted into a classroom where 

the trainees participate in job- related learning activities. 

Today, all trainees are "verified" 

as being developmentally disabled 

adults by the California 

Department of Rehabilitation and 

they receive financial support. 

However, the verification took 

place only after the Department heard about the program, 

investigated it and became so 

impressed by the program that they 

offered to "vendorize" it. 

Filipponi's program involves 

many sensible, easy-to-understand 

principles and practices. They are 

best described in his own words:  Initial Interviews. "I find there's 

not all that much difference 

between interviewing a prospective 

insurance agent and a mentally retarded candidate for vocational 

training. The rules are the same and 

we look for the same basic things. 

It's still a case of an employer 

interviewing a job applicant from a 

strictly business point of view. 

"Of course, the most important thing we keep looking for 

throughout the interview is 

motivation. Nobody can produce very much without it. We even 

make it clear to the parents and the 

counselors who bring the
Work 

retarded persons for the interview that 

its the applicant's wanting to learn the 

bakery business that counts. 

"During the interview, we see that 

they level with us about their handicaps. We want them to tell us what 

medications they are taking, what 

kinds of seizures they may be having 

and why they aren't using that 

crippled hand they seem to be 

hiding." 

 The First Two Weeks. "If they are accepted for training, we have 

them agree to stay with us for two 

weeks, no matter what happens. At 

the end of that period, they can tell us 

what they don't like about us or the 

bakery and they can quit. On the 

other hand, we intend to tell them 

how we see them after two weeks as 

well. Quite often, mentally retarded 

persons become frightened in a new 

setting such as this and they want to escape—so we do everything to hold 

them steady until they are no longer 

afraid. 

"In these first two weeks, they are 

exposed to jobs in the front— 

cleaning tables, arranging pastries in 

the display cases and giving samples 

to customers. Then, they do various 

jobs in the bakery, from washing pots and pans to working with the dough. They also spend time in the classroom working on job-related 

learning tasks that involve using the 

cash register, making change, 

learning proper sales communication 

with customers, using the telephone 

and making out time cards. These 

people haven't worked before and 

they need to get many things straight in their minds about working. By the end of the first two weeks, we are 

ready to assign them to the group of 

salespersons in the front or to the 

bakery crew in the back." 

 Sales Training. "Everybody begins by being afraid of the cash 

register, but that's the easy part of 

selling and we help them handle that 

problem quickly. The toughest task is 

training them to do a good job of sell- ing. They must learn not merely to 

say to a customer, 'Can I help you?' 

Instead, they must develop confidence in saying things like, 'Good 

morning, how are you today? We 

have some wonderful cinnamon rolls 

this morning.' It's gracious statements 

like these that get an extra fifteen 

dollars in the till. That's the kind of 

salesperson every boss wants. And 

because these trainees are 

handicapped, we intend to make 

them better salespersons than socalled normal people. 

"There are many little things that 

good salespersons must learn. For 

example, the effective display of 

pastries and skillfully knowing where 

each should be placed for the best 

sales are both important. The ability 

to be properly groomed allows them 

to meet health department standards 

and to be attractive to the customers 

as well. These are the little things that sell donuts—and selling is what this 

job is all about." 

 Customers as Teachers. "Most 

customers don't know that they are 

the best trainers we have. From them, 

our trainees learn to understand all 

kinds of people, even the grumpy 

ones. For example, we had a retarded 

young lady who was extremely shy, 

so we gave her a tray of bakery samples and told her to go out and give 

them to the customers. She received 

so many kind responses from people that her shyness disappeared almost 

immediately. Giving samples to customers, pouring them an extra cup of 

coffee and listening to their responses 

are excellent training devices." 

 Bakery Training. "Those we train 

in the bakery work side by side with 

the bakers until they know 

everything about preparing and 

baking different kinds of dough. 

They learn to weigh the portions of 

dough and water, as well as to 

measure such things as yeast, nuts 

and flavors. Since we are 

mechanized, the trainees learn to 

work with mixers, the proof box 

where the dough is raised, the glazer, 

the donut dropper and the friers, each 

of which contains 200 pounds of 

very hot shortening. They also 

become skilled in making various handmade pastries." 

 Corporation Titles. "When the 

plan to become a nonprofit corporation was read to some of those working with us, one responded by saying 

'Hallelujah.' He said it in such a joyful way, we decided to name ourselves 

'The Hallelujah Corporation.' After 

all, it sounded so much better than the 

usual pity-getting names that some 

corporations use. We want to be 

happy and strong!" 

Since the opening of the Donut 

Shop, 28 persons have moved 

through the training program to other 

jobs. Many are working in fast food 

chains, ice cream shops and family 

restaurants. Those who have developed into pleasant, over-the-counter 

salespersons have found a wide 

choice of jobs waiting for them. Also, each trainee leaves the Donut Shop with completed applications for his 

next job and with a remarkably 

elaborate resume. After all, when 

they leave this unique training center, 

they do have a job history of which 

they can be proud. 

Hallelujah Corporation is now 

expanding to other "mainstreaming" 

vocational training efforts. For example, the corporation now conducts a 

housekeeping program in a 54-unit 

motel in La Mesa. Ten mentally 

retarded persons are involved in this 

program. 

The members of this corporation 

are adamant in their belief that mentally retarded persons best learn how 

to live and work in the real world by actually living in it. They have no use for isolated, artificial training efforts. 

Instead, they expose trainees to the 

genuine components of a 

community and industry—

especially customers. 

One last point about customers as 

trainers: Any visitor sitting at a table 

in the Donut Shop, eating a donut, drinking coffee and listening to the 

many conversations which take 

place over the counter, can easily see 

that those purchasing the pastries are 

receiving a rich education, too.

51 
Self Assertion 
Self Assertion 

WE ARE PEOPLE FIRST 

A gentle protest can now be heard 

throughout the nation from mentally 

retarded persons who are tired of 

being over-protected. They have 

begun to object when professionals 

and non-professionals make decisions for them and speak for them, 

when, with a little time and patience, 

they could have decided and spoken 

for themselves. These first protests 

are, perhaps, the latest step in a natu- ral evolution: They have come out 

of groups of handicapped persons in 

community settings where new 

styles of organization have enabled 

individuals to speak more genuinely 

about themselves than ever before. 

The protests are still gentle. However, as the community 

organizations gather strength and 

momentum, they may become 

more demanding. Mentally retarded 

persons may start reacting like the 

rest of us; when others attempt to do 

things for us that we are determined 

to do for ourselves, we have ways of 

telling them to back off. 

People First, Salem, Oregon National attention has begun to focus on "People First 

Conventions," a young and thriving 

movement of developmentally 

disabled persons who organize and 

carry out their own convocations 

with little help from nonhandicapped persons. The first 

convention was a state assembly 

which was held at Otter Crest, 

Oregon, on October 12-13, 1974. 

The convention, which was 

attended by 560 persons, had as its 

theme, "We Have Something to 

Offer." A second convention was 

held the following autumn at Bend, 

Oregon, with 750 in attendance and, 

from that time on, the movement 

has expanded rapidly. Similar 

conventions have convened in 

California, Kansas, Washington and 

Nebraska, as well as in the provinces of Ontario and Alberta. 

Regional meetings have embraced 

six states at a time and some 

conventions have drawn over a 

thousand participants. 

As a result of the movement's 

obvious success, some states have 

become interested in applying for 

grants in order to "buy" such 

conventions for their own 

developmentally disabled residents. 

Such searches for funds reveal that 

some state leaders may have missed 

the whole point of the People First 

movement. Far more serious: The 

assemblies that such uninformed 

leaders create may, at best, be 

artificial and superficial. 

The first convention was two 

years in the making and was the 

unforeseen product of follow-up 

relationships between former 

residents of the Fairview Hospital 

and Training Center (FH&TC) and 

some of the institution's social 

workers. Throughout the Salem 

area alone, these social workers 

conducted 23 weekly support group 

meetings. One FH&TC staff 

member explained why they were 

needed: 

Our former residents seemed to 

be moving into the community 

like immigrants coming into a 

new country. They couldn't 

seem to be their own advocates. 

Others conned them into doing 

things they shouldn't have done 

and they had a hard time 

expressing what it was they 

needed in order to survive in the 

community. They needed to 

'unwind' what they learned in 

the institution and we were 

committed to keeping them 

from returning to the institution. 

The support group processes took 

some surprising turns. For example, 

it was learned that one handicapped 

person sometimes had a special 

knack of understanding what a 

comrade was going through. And 

sometimes he had a down-to-earth 

way of telling the struggling 

comrade what to do about his 

problem. The social workers, 

observing such friend-to-friend 

solutions, had the good sense to 

discuss this phenomenon among 

themselves and to develop detailed 

procedures for reinforcing it. The 

procedure clicked and an outstanding 

"peer-group support system" was 

53
Self Assertion 

born. Then, it dawned on everyone 

that as the handicapped persons 

were talking more and more, the 

social workers were talking less and 

less. It was the first indication that 

handicapped persons could indeed 

take charge. 

A similar evolution was taking 

place in Canada. Two FH&TC staff 

members and three handicapped 

persons attended what was billed as 

"the first convention for the mentally 

handicapped in North America," in 

British Columbia. Hearing so many 

mentally handicapped persons 

speak out about their own situations 

was a heady experience for the five 

visitors from Salem. When they 

returned, they shared what they had 

seen and heard with other support 

group members. The group 

members were ripe for such talk as 

this and they discussed what 

happened for many weeks. Finally, 

it was decided that they would 

launch their own convention. 

Seven months were spent 

learning everything they could learn 

about such conventions—what they 

are, how they are conducted and 

what detailed tasks must be carried 

out in preparation. Elected 

representatives from all 23 support 

groups came together to form a core 

planning group. Officers were 

elected. Then, in the fifth month, 

they decided their organization 

should have a name, and one was 

voted from 12 possibilities when a 

member said to the group: "We are 

tired of being seen first as 

handicapped, or retarded, or 

developmentally disabled. We want 

to be seen as people first." 

The convention had barely started 

when there were two strikes against 

it. First, 200 participants were 

expected and 560 showed up. 

Second, the leadership—sincere, 

but very unsophisticated—got 

mixed up so that the last item on the 

two-day business agenda was 

presented first. Nevertheless, the 

"helpers," understanding these 

conventioneers and believing in 

them, stepped back and allowed 

them to solve things in their own 

way. 

Old institutional friends found 

each other; they hugged, laughed 

and talked together. Impromptu and 

planned speeches were given, and 

individuals talked about themselves, 

where they lived and worked and 

what they wanted to do in the future. 

Meals were eaten, a dance lasted 

until 2:30 a.m., church services were 

attended and walks with friends on 

Oregon's picturesque seashore were 

taken. 

An uninformed observer might 

have thought the convention a 

shambles, but in the minds of the 

participants it was not. Almost 

everything that had happened to 

them was sheer beauty, an 

experience that many will 

remember for as long as they live. 

In the closing moments, there was 

a rousing, unanimous vote to have 

another convention next year. And, 

as many handicapped persons said 

their goodbyes and their see-younext-year's, it was evident that these 

people had caught a contagious convention fever that continues to 

spread even today. 

The experience at Otter Crest and 

during its two-year preparation 

period has cast new light into some 

of the shadowed corners within the 

field of mental retardation. Some of 

these innovations are: 

 An organized mechanism that encourages handicapped people to 

speak for themselves in large assemblies (and in small ones, too) was 

born. One helper explained the 

breakthrough as he saw it: 

Many of these people have 

been participants in conventions held by professionals and 

voluntary organizations, and 

when they tried to speak out in 

their unsophisticated manner, 

they were often smiled at and 

ignored, or they were politely 

quieted. At Otter Crest, 

they had a chance to speak out 
Self Assertion 

shown an increasing efficiency and 

sophistication as far as the programs 

are concerned. The earliest workshops, for example, provided some 

much needed freedom for persons 

to speak out. The following year, 

convention topics dealt with 

organizational details: "How to Start 

a People First Chapter in Your 

Community" . . . "How to Get 

People to Meetings" . . . "How to 

Hold Elections" . . . and "How to 

Raise Money." Today, the conventions are tackling some of the tough 

current issues in the field: "Barriers 

to Persons in Wheelchairs" and 

"How to Get More Service from 

Your Service Workers," for 

example. It is obvious from this 

pattern that members of People First are well on their way to creating a 

new consumer movement that will, 

more and more, be heard and 

reckoned with. 

 The People First movement is built more on "moxie" than money. 

Convention bills have always been 

givers too can clash with those of 

the professionals. Also, som

f program 

ctated by 

pr d 

be , pr

m

developing people—just like the 

re

po

in al 

lan cannot predict? Some people 

55 

unashamedly. They were 

unpolished at first, but the very 

chance to speak out without 

others putting a damper on them 

was like breaking out of prison. 

 Discernible patterns of growth have been observed in many of the 

Oregon participants over the years. Many can even describe personal 

changes on their own. For example, 

one young woman with a slight 

speech impediment described what 

happened to her: 

I never thought I could get up 

and speak to others. I was scared 

I would say something wrong. I 

used to do some of the darndest 

things, you see. I got flustered the 

first time I got up and spoke at 

the convention, but I got through 

it and one of the helpers said the 

people liked me—I was so 

scared, I wouldn't have known 

that. Now, I have testified at 

legislative hearings on group 

homes and I've spoken on 

television. I've even talked to two 

governors, Tom McCall and 

Bob Straub, about People First 

and what we are doing. 

 The conventions in Oregon have 

paid from the $25 registration fee 

which each People First member 

had been saving up for many 

months in advance. Some agencies 

do provide assistance—for instance, 

for transportation costs—but such 

help comes from budgets that 

already exist. 

 People First members are now on the Governor's Committee for 

the Handicapped, the NARC Board 

of Directors and the Oregon State 

Developmental Disabilities Council. 

Also, representatives are active on 

many of the state's task forces that 

are working on group home 

standards. 

 As members of People First learn to express themselves, it has 

become obvious that others will 

need to make shifts in their own 

attitudes and skills. For example, 

some professionals visiting both the 

conventions and the small group 

chapters have tended to be 

uncomfortable in some of the 

meetings. Said one helper: "Some 

professionals seem edgy in the 

People First meetings because they 

always saw themselves as 'bountiful 

givers' to handicapped people. Now, 

the handicapped persons' urges to be 

professionals simply can't stand 

silence. Some of the members can 

sit silently and feel their groupness 

for long periods of time without 

saying a word, and that's not always 

bad." 

 There is one message which 

comes repeatedly from People First 

tes

e

technology, mentally retarded 

persons are often expected to move 

from Milestone A to Milestone B 

with professionals X, Y and Z 

delivering specific interventions 

according to a program di

an

timonies that is gathering increasing force: Time and time again, 

members mention their passionate 

hate for the word retarded when it is 

used to describe them. 

And so a new consumer force has 

been born that preaches "self advocacy" and "the power for peer group 

education." Already, many professionals in the field of mental retardation have been moved by the 

activities emerging from this group 

of people who, a few years ago 

would never have been expected to 

represent their own interests. But 

now, some are doing it. And as 

People First members successfully 

give us their candid views about 

current issues in the field, it can lead 

to fresh insights by us all. 

ART EXPRESSION THAT 

CHANGES PEOPLE'S LIVES 

In these days o

 interdisciplinary team. Such

ecise programming has produce

nefits. It has, for example

ovided documented proof that 

entally retarded individuals are

st of us. 

But could there be other creative

tentials within some handicapped 

dividuals that the usual technic

p
Self Assertion 

w

ad

th

Th

C

Sh

show—who also happens to be the 

fo

ex

an answer to the need these 

is made up of visual arts instructors, 

performing arts instructors and 

music therapy interns. 

This private, non-profit agency 

receives financial support from San 

Joaquin Delta College which pays 

for courses on a purchase-of-service 

basis and from the Valley Mountain 

Regional Center which covers other 

service contracts. The remainder of 

the funds comes from a variety of 

small government grants and 

donations. 

The energizing force is found in 

the training process. The director 

explained, "We're not, as our 

primary goal, looking for the 

product. What we're really looking 

for is the process that gets people 

there. That's what changes people's 

lives." This process usually is 

composed of three basic 

movements: The students create 

er became a 

his own 

The students are also active

in the field of fine art. Their

paintings, drawings, sculpture

and photographs are exhibited

in colleges and building lobbies

throughout northern California. 

ho work with mentally retarded ults have come to believe that 

ere are. 

e Alan Short Center, Stockton,

alifornia 

W

e

hen this "art college" opened its doors two and a half years ago, it 

added one more innovative 

program to the growing list of 

training options for mentally 

retarded adults. The program was 

the result of a crucial need 

uncovered by another successful 

California effort: A Very Special Art 

ow. The founder of this art 

under of the Alan Short Center—

plained what happened: 

In the spring of 1974, special 

education teachers throughout 

the state began helping their 

mentally retarded students to 

produce all kinds of artistic 

creations which were shown at 

Cal-Expo (the State Fairgrounds 

at Sacramento) in the fall. That 

year, more than 1000 creations 

were exhibited. Prizes were 

awarded and many items were 

sold. A Very Special Art Show

was such a success, it has 

become an annual affair . . . and 

it's getting better each year. But 

something began to happen that 

was painful to us all. Special 

education teachers wrote and 

telephoned, saying that many of 

their most promising artists were 

turning 21—the age limit for 

public school attendance in the 

state—and these teachers were 

fearful for the future of their 

graduates. After leaving school, 

most of these retarded citizens 

were faced with four options: 

They would go to an institution, 

stay at home with no program, 

attend work activity centers, or 

enroll in vocational training 

programs. Many of the teachers 

were heartsick, because they felt 

that none of these options would 

continue the artistic creativity 

which had been discovered and 

reinforced in their students. The 

Alan Short C nter was started as 

teachers uncovered. 

Today, the center is in full operation. Sixty students (ages 18 to 60, 

with the majority in their 20's and 

30's) attend classes in a spacious, 17-

room mansion that was once the 

Stockton State Hospital superintendent's home. The mansion is located 

on a corner of the institution's 

grounds in downtown Stockton. 

Most of the students live in 

community group homes or in their 

own homes. However, 25 percent 

are developmentally disabled 

residents of Stockton State Hospital 

who are now in a "community ree tr n y" program. 

The students take a full range of 

courses in the performing, visual 

and expressive arts. The current 

offerings: Drama, Square Dancing, 

Folk Dancing, Chorus, Instrumental 

Music (i.e., Swiss hand bells, drums, 

guitars, recorders and flutes), Music 

Theory (Many students who cannot 

read words have learned to read 

music), Weaving, Sculpture, Pottery 

Making, Photography, Film 

Making, Painting, Drawing and 

Poetry. All courses are extension 

courses of nearby San Joaquin Delta 

College and all attending the Center are full-fledged, card-carrying 

students of the college. The faculty 

something; they share their creations 

with their comrades; and the 

accomplishments are then shared in 

many different ways with the public. 

Here are some examples: 

Fatso, a musical stage production, has been playing at state fairs, conventions, festivals, colleges and, 

recently, at the American Theatre 

Association meeting in New 

Orleans. The music and lyrics were 

written by a promising music 

therapy intern who lat

permanent staff member of the 

Center. The story line came from 

the real-life human situations of the 

handicapped actors themselves. 

Fatso—dressed in a costume with 

tremendous amounts of stuffing—is 

the hero who, at the play's beginning, 

is ridiculed by the other characters. 

But Fatso turns the tables. One by 

one, he calls attention to the 

deficiencies of the other characters 

and he tenderly helps each person to 

accept and compensate for their 

defects. At the play's end, Fatso 

comes to grips with 

problem. 

The play has been well received, 

wherever it has been produced. But 

more important: It has become a 

powerful force for positive attitude 

change toward handicapped persons. 

The Short Swingers are a faststepping, beautifully costumed 

troupe of precision square dancers. 

These dancers, who once tended to 

shuffle just as many retarded 

persons are expected to do, have 

performed throughout the state and 

were recently featured entertainers at 

the National Parks and Recreation 

Association's national meeting in 

Miami. And one singular triumph 

for the former "shufflers": They 

now hold workshops and teach nonhandicapped persons the various 

steps. 
Self Assertion 

lso, the Center has a gallery in the 

ansion which is open to the public 

ch day. 

This steady outpouring of 

eativity is in stark contrast to the 

stems managers and training 

chnologists currently in vogue in 

e field of mental retardation. The 

ntributions of the Centers artists 

nnot help but keep the field from 

coming too ingrown and 

rochial. The following 

ey have much to give to the field: 

Creative dialogues between 

rnest after some of the West

oast's leading chart-and-graph 

ecial education professors 

tended a performance of Fatso. 

ten mix like oil and water, the 

ndicapped players in Fatso

elted the barriers between the 

ecial education technologists and e art instructors. As a result, formal 

ppening in Fatso—each 

fferent perspectives. 

Small groups of students—most 

asses average from seven to ten 

udents—have discovered a beautil freedom for dis

A

m

ea

cr

sy

te

th

co

ca

be

pa

happenings and concepts show that 

th



artists and technologists began in 

ea

C

sp

at

Although technicians and artists 

of

ha

m

sp

th

plans are now underway to 

investigate and discuss what is 

ha

contributing what is seen from 

di



cl

st

fu cussing and learning from one another while 

e most. I 

to try it. They are doing it 

A

persons labeled "mentally 

57 

focusing on a common creative 

effort. For example, the members of 

one group were so taken with 

Wonder Woman (featured each 

week on television) that they 

decided to construct a life-size, 

papier mache model of her. The 

project was a tremendous success. 

But, while focusing on the careful 

construction of a woman's body— 

especially the breasts—the group 

engaged in a serious and respectful 

discussion of sex and what it means. 

 Applause changes people. This is as true for the handicapped students at The Alan Short Center as it 

is for any professional performer. 

The cast of Fatso now struggle to improve their stage presence, diction 

and grooming. The actresses 

decided to go on a rigid diet to 

prepare for their New Orleans 

performance; and all of the 

performers have developed an 

excellent sense of timing when the 

audience laughs. 

 The faculty wisely recognizes that all mentally retarded persons 

will not become enthused in such a 

setting as this. For this reason, candidates are invited to come to the 

Center and spend time there to see if 

they really want to enroll. Even if a 

student fails to thrive in the setting, 

faculty members skillfully—and 

without causing guilt feelings—

manage lateral transitions to other 

programs in the community. 

 For many students, certain per- ceived limits have been dissolved. 

"These people came to the Center 

with a long history of being told verbally and nonverbally what they 

can't do," the director stated. "And 

they all came to the Center labeled 

'mentally retarded,' while their 

records stated they have IQ ranges 

of from 20 to 70. They were often 

called 'behavior disordered,' too. But 

when these people were put into 

settings where there are no limits, 

some have gotten so enthused with 

what they are doing that they 

surprise everybody. They transcend 

the limits that others have placed on 

them." The director of Fatso

explained, "I never show them I 

expect the best, or even th

just help them along in the process, and they have moved on their own, 

far beyond anything I ever 

expected." 

 Such freedom to move in their 

own creative directions has given 

them confidence to move in new 

directions beyond the Center. Such 

moves usually begin with questions they had always been afraid to ask. 

For example, one man asked, "Why 

can't I work at McDonald's?" The 

only answers he received were: 

"Why not?" Today, he holds down 

a job at McDonald's and loves what 

he's doing. Other students who, two 

short years ago, would never have 

thought of getting involved in 

academic learning have transferred 

to the Delta College campus where 

they are taking special courses in 

simple reading and math. They are 

doing it because they were 

counseled 

because they want to. 

Such success stories have not 

gone unnoticed. The National Committee, Arts for the Handicapped in 

Washington, D.C., has named The 

lan Short Center as one of its 

"National Model Sites." 

The Center has made a reality of 

the statement by Mark Twain that 

"We are only handicapped with 

what we think we cannot do." 

Many of the faculty members have 

adopted the statement as their 

unofficial motto. But even those 

who haven't seem convinced that 

soaring expressions of poetry, the 

inner eye of beauty and fresh, clear utterances about what it means to 

walk as a human being can come 

from 

retarded." Nothing that has taken 

place at The Alan Short Center has 

lessened their conviction. 
The Mentally RetardedOffender 

BECOMING SOMEBODY . . . 

THE CONSTRUCTIVE WAY 

When a mentally retarded person 

has been found guilty of breaking 

the law, the judge is often faced with 

two equally grim alternatives. If the 

handicapped offender is sent to 

prison, he often becomes the 

vu nerable "patsy" who is cruelly l

used and led astray by the other 

inmates. However, if he is sent to an 

institution, he is usually "streetwise" 

enough to become a ringleader who 

manipulates other residents into 

committing antisocial acts. 

Five years ago, one counselor in 

Nashville described the youthful 

retarded offender's plight when he 

testified, "The boys we get just don't 

fit anybody's program. The schools 

don't want them. The MR 

institutions don't want them. The 

training schools don't want them. 

Their neighborhoods don't want 

them." Fortunately such testimony 

has become a cause for concern in 

states like Tennessee, where there is 

a general feeling that the mentally 

retarded offender should no longer 

Our House Two, Nashville, 

Tennessee. 

One young man came to the home ready to fight anybody who 

opposed him. Another arrived 

telling everyone that someday he 

would be a successful, well-dressed, 

big-carowning pimp who would sit 

back while "his women" worked for 

him. A shy youth came, thinking 

that the best way to live was to 

quietly steal things. Others came, 

hating teachers, policemen and all 

other authorities who had attempted 

be ignored. young man in a series of activities 

nd the 

house is farmland. Consequently, 

the home is not as noticeable 

as it would be on a city block in 

to straighten them out in the old 

environment. But behind the antisocial attitudes of the eight teenagers 

(ranging in age from 15 to 18) could 

be found some piteous common 

denominators: They were all 

mentally retarded . . . they were only 

pseudo-streetwise . . . life was a 

painful puzzle to them . . . and they 

were trying desperately—in the 

only ways they knew how—to be 

somebody. 

The hand-picked staff members 

of the home understand such 

facades—and the internal anguish, 

too—and they begin to involve each 

designed to help him be the 

"somebody" he really desires. But 

they do it in constructive ways. 

Our House Two is one of four 

homes based upon information 

gained from an earlier 

demonstration effort (The Juvenile 

Offender Project, a joint venture of 

the Tennessee Department of 

Corrections and the John F. 

Kennedy Center of Peabody College) and mandated by recent 

state legislative action (The Special 

Correction and Rehabilitation Act of 

1974). Similar youth programs are 

operating in Memphis (The Tennessee Law Enforcement Planning 

Agency (TLEPA) Group Home) 

and Cleveland (The Hermes Group 

Home for the Mentally Retarded 

Offender), while one unit serves ten 

adults in Knoxville (The Sertoma 

Learning Center). 

Our House Two is located on 

12 acres of land facing a 

suburban highway and a large 

shopping center. Behi
The Mentally Retarded Offender 

the center of town and the clients 

have easy access to both the rural 

and urban ways of life. 

Also behind the house is a small 

cottage which is used as a remedial 

education classroom. The courses 

delivered in this cottage school are 

designed to help clients find happiness in learning—to the point where 

they will eventually want to return to 

a public school. 

All clients are first sent by the 

court to Clover Bottom 

Developmental Center. This 

institution then refers them to Our 

House Two, remaining involved by 

assisting with the diagnosis and 

evaluation and by offering other 

supportive resources as needed. 

Since these mentally retarded 

offenders are on the brink of adulthood, the home becomes a much 

needed transition stage where a 

handicapped person is helped out of 

is childhood environment and pre-

, 

d for each resident. 

Those who participate in the process 

are the client himself, home staff 

members, the client's parents or 

other relatives and representatives 

from the public school, the local 

mental health agency and Clover 

Bottom Developmental Center. 

Every new resident receives at 

least four hours per day of personalized remedial education in the cottage classroom until he re-enters 

public school special education 

classes. Even after this happens, the 

resident will still receive two hours 

per day of such remedial work. The 

teacher/counselor who conducts the 

session is skilled at building success 

into every remedial assignment. For 

example, when it was learned that 

Robert could read 30 words, the teacher/counselor composed a story 

containing only those words. On the 

day that Robert read this story to his 

fellow residents, they cheered as he 

beamed with pride. Robert's love of 

Utilizing a rotating chairmanship 

and Robert's Rules of Order, the 

residents review and revise all 

general rules of the house. They also modify and administer each 

resident's individualized point and 

reward systems. For example, 

Richard was found guilty of staying 

up late and playing TV too loudly. It 

was agreed that Richard would be 

fined a certain number of points for 

each late night TV disturbance. The 

loss of these points would make it 

impossible for him to receive his 

most prized reward: a date with his 

girlfriend on the weekend. (No staff 

member would have dreamed of 

being as strict as Richard's fellow 

residents.) Consequently, Richard 

became remarkably quiet in the 

evenings. 

Options for work, education and 

recreation in the community have 

become so numerous that most resiwill move into other segments of the 

59 

h

pared to move into a community of

his own choosing as an independent

responsible, productive citizen. Our 

House Two, providing love and 

technological reinforcements, offers 

a retarded offender the richest 

opportunity he will ever have to 

change the direction of his life. 

The atmosphere is dignifying and 

low key. The basic training strategy 

can be stated in four simple sentences which are connected with an 

easy-to-remember mnemonic— 

RAID: 

Rules should be simple and as 

few as possible. 

Approve appropriate behavior 

promptly. 

Ignore inappropriate behavior 

while in action. 

Disapprove or interrupt 

dangerous and destructive behavior. 

Many nurturing activities have 

evolved from the above basic strategy. For example: 

A thorough individual program 

planning process that utilizes the 

Gunzburg Progress Assessment 

Chart (PAC) system and all components of the AC MRDD Standards 

is develope

learning was born that day. Six 

months later, he was able to read 

over 200 words. 

The housekeeping of Our House 

Two is a matter of good teamwork 

and timing. Everyone has specific 

chores to perform for which he 

receives points that can be saved and 

used for personal rewards. The 

young men are even responsible for 

breakfast, with each resident taking 

his turn as cook, table setter, dishwasher and kitchen cleaner. 

Every resident has at least one formal hour of individual counseling 

per week with either the 

teacher/counselor or the 

administrator/counselor. However, 

all house staff members are 

available for many hours of informal guidance sessions. The complete milieu of Our House Two 

demonstrates to the residents that in 

this home all are advocates who 

stand ready to inspire and reinforce 

as many positive changes in each 

resident as possible. 

Self-government meetings were 

started with some apprehension, but 

have now produced creative results 

beyond everyone's expectations. 

dents have a problem deciding what 

they will do. Some recent examples 

of summer activities: Richard and 

Robert had jobs working on house rehabilitation crews serving elderly 

persons . . . Sam worked as a 

groundskeeper at Peabody College . 

. . Carl, being athletically inclined, 

participated in Tennessee State 

University's summer athletic 

program (the same program that 

Olympic champion Wilma 

Rudolph participated in as a young 

girl) . . . Pete attended a center that 

taught small engine repair . . . 

Jerome took guitar lessons . . . and 

Leon and Lester, the two youngest 

residents, enrolled in the Nashville 

Parks and Recreation Department 

summer program. 

Although Our House Two has 

only been open since December 23, 

1977, three clients have already 

moved on. Sam, Richard and 

Robert have kept their jobs and have 

moved into "sheltered apartments." 

(Our House Two is but one of a 

network of community residences 

developed by Home Two 

Incorporated, a private, non-profit 

agency. It is expected that residents 
The Mentally Retarded Offender 

network.) All but one of the 

remaining residents are attending 

public high school while getting extra booster education in the 

a state becomes 

co

schools, the youth authorities, the 

C) 

ar

the 

plight of these teenagers and 

de

ff and students begin by 

taken away and 

ne

remedial classroom. Three new 

residents now fill the vacancies left 

by those moving out. 

The activities in Our House Two 

and the documented development 

of its residents show what can 

happen when 

ncerned with the plight of its 

mentally retarded offenders. 

Tennessee is one state among many 

which is now committed to helping 

such handicapped persons to be 

somebody—and to do it 

constructively. 

THE SCHOOL THAT FINDS 

ITS STUDENTS ON THE 

STREETS 

An increasing number of teenagers 

in large cities have found their 

school education so distasteful that 

they no longer attend. Instead, these 

fugitives from the classroom receive 

a different kind of education on the 

streets: how to evade the authorities 

and how to counteract long hours of 

boredom by engaging in illegal and 

destructive activities. Many of these 

drop-outs are mentally retarded 

teenagers who desperately need every practical educational 

opportunity they can get in order to 

survive in a world that—without 

warning—can overwhelm them at 

any time. 

As long as these retarded teenagers are on the street, they remain 

invisible. However, they are fre- quently brought to court for crimes 

they have committed (all too often 

in a bungling, unsophisticated 

manner). Once in court, they receive 

the label "mentally retarded 

offender," which only makes 

matters worse, since it is unclear 

whose responsibility it is to serve 

them. One official from a large Eastern city stated that, in the past 

ten months, he attended five conferences at which agency representatives tried to determine whether 

these handicapped offenders were 

the responsibility of the public 

developmental disabilities agencies, 

the juvenile court system or the 

agencies which deal with child 

neglect. 

Meanwhile, some agencies like 

New York City's Association for the 

Help of Retarded Children (AHR

e not waiting for official decisions 

to be made. Since they are used to 

serving mentally retarded persons 

with unmet needs, they have 

quickly moved into the business of 

educating these handicapped 

children of the streets. 

The Flushing School, Queens, New 

York 

It is not uncommon for a staff 

member of this school to enter a private home, walk into the bedroom 

and persuade a student to get up and 

come to school. Such an action is 

only one of the many ways these 

teachers demonstrate two basic attitudes of the school. First, these 

teachers really care about what 

happens to their students and they 

show it, not by what they say—

words like "love" and "care" only 

provoke immediate suspicion in the 

teenagers—but by the many out-ofthe-ordinary things they do. Second, 

these teachers believe that learning is 

an extremely rich experience. 

Neither of these two basic 

attitudes are particularly easy to get 

across, since the students have 

grown up hating schools and 

teachers. And yet, it is these two 

attitudes which eventually draw a 

student into faithfully attending The 

Flushing School. These attitudes are 

genuine. They have to be, since a 

student who has reason to doubt 

their genuineness can "blow" his 

chances for education on the spot. 

Flushing School is a small, 

personalized school that holds 

classes in a rented church building. 

The program accommodates 20 

young men, from 13 to 18 years of 

age, who live in various parts of the 

Borough of Queens in New York City. The program came into being 

two years ago when AHRC and the 

Developmental Disabilities Council 

of New York began discussing 

cided to develop this pioneering 

program. 

The staff members are a sensitive, 

committed group of professionals 

who live in the area and who 

possess a keen street wisdom 

themselves. Each staff member 

seems to have a personality that is 

attractive to students like these. 

("These guys will push you to the 

wall to see if you can be strong and 

kind at the same time. This is no 

place for 'softies'.") 

The program is so closely tuned 

to the practical needs of the students 

that many vivid, relevant 

educational components have been 

created out of the sheer necessity of 

giving students exactly what they 

need. For example: 

 The sta

having breakfast—or, perhaps, a 

cup of cocoa—together. Since 

many of the students do not receive 

breakfast at home, this coming 

together is a must. It is, everyone 

agrees, an excellent way to begin the 

day. 

 After breakfast, the male staff 

and the students meet in the lavatory 

for on-the-spot training in grooming. 

They practice such things as washing their hands and face, brushing 

their teeth, combing their hair, and 

applying deodorant. 

 No weapons are allowed. In the first days, all knives, chains, pipes, 

large bolts, whatever, were checked 

when the students entered school 

and were returned when they left. 

Later staff members decided to give advance announcement of a change 

of policy: Any weapon brought to 

school would be 

ver returned. After some testing, 

the procedure was accepted by 

everyone. 

 Press statements and publicity 

about the program are rarely 

allowed in order to respect the 

confidentially of the students. The 

on-site visit and interviews that 

produced this report were approved 

only after it was made clear that 

the readers might be able to use 

the ideas created at The Flushing 
The Mentally Retarded Offender 

School in similar programs 

elsewhere. 

 The label "retarded" is never 

used in conversations at the school. 

Almost all students have developed 

a natural hate for the term. 

 An advocate is present on the 

st

and out of the room) 

on 

s). 

as and 

these distorted views may ha

t training for the 

dent has sometional components will probaontinue to be 

r made it clear why these 

61

aff who automatically goes to 

court with every young man in 

trouble with the law. The advocate 

also keeps communications channels open with all probation officers 

and assists with teaching duties. 

 An interesting data-based pro- gram was utilized in the opening 

days of the school in order to stop 

two negative behaviors (fighting 

and running in 

and to reinforce one positive acti

(participation in class activitie

Substantial rewards—camer

boxing gloves, for example—were 

awarded when students achieved 

the stated goals. Later, classes 

became so orderly and the interest of 

students became so high, that this 

component was no longer needed. 

 Three basic foundation courses 

have been instituted for all students: 

Workshop, Art and Academic 

Education. The workshop became 

the earliest interest-getter. Each 

student was helped to build a bicycle 

from junk parts. When the bicycles 

were completed, they became the 

students' property to take home. 

Recently, the students constructed 

their own paddle ball racket for a 

special tournament they were 

having. They have also been doing 

detailed woodcarvings of animals 

on plaques. All products must have 

a practical relevance for the student 

and all products are theirs to keep. 

During such processes, by the way, 

the students learn to use a wide 

range of heavy-duty (even 

dangerous) industrial tools. 

After initial successes in the workshop, the students became involved 

in art. It was learned through the students' drawings that many had 

serious problems in how they saw 

themselves and how they saw the 

world around them. The school's art 

teacher was effective in helping the 

students correct faulty perceptions 

and do complete, dignified 

drawings of themselves and others 

around them. There is some 

evidence that the overcoming of 

some of 

ve paved the way for improved 

reading ability. 

The academic class was the last of 

the three foundation courses to win 

the students' interest. It was learned 

that many students were secretly 

ashamed of being unable to read 

and write and that they longed to 

posses such skills. When the 

academic teacher enabled each 

student to achieve real success in 

personalized reading tasks, their 

interest in academic pursuits began 

to increase. However, even in the 

academic class, such activities as 

reading, writing, math and social 

studies have extremely practical 

goals—like learning to read the 

newspaper for meaning and 

learning to fill out working papers. Learning all aspects of cooking is 

another component of the school. 

Each day, two students and a 

teacher decide on the menu for a 

noon meal to be eaten by all staff and students. Together, they purchase the items, cook them, set the 

tables and clean up after the meal. 

On warm spring days, students 

and teachers form crews that spend 

half the day in the community 

making real money which students 

can keep. The crews have seeded 

and cut lawns, planted gardens, 

tarred roofs and repaired 

automobiles. On snowy days in the 

winter, class schedules are modified 

in order for small crews to make 

money by shoveling walks. 

A tremendous number of 

"domestic science" trips take place 

in small groups. Many students have gone with their art teacher to 

Manhattan museums ("Who would 

have thought these youngsters 

would learn to appreciate art?) 

Many of the students had never 

before traveled over the bridge to 

Manhattan; however, now they go 

sightseeing everywhere. Other trips 

that are purely practical include 

going to the post office to purchase 

stamps and mail letters, visiting 

health clinics and talking to 

personnel officers about how to 

apply for jobs. 

Although the overall 

Individualized Education Plan (IEP) 

is developed, carried out and 

measured according to high 

standards, each student receives a 

daily personalized IEP schedule 

when he arrives each morning. The 

schedule carefully spells out all 

activities a student will attend along 

with the exact time of arrival. Such a 

schedule is excellen

student, and it keeps the staff 

members, who write them, on their 

toes as well. 

Each student has a confidant in 

one of the staff members. All staff 

members are trained for such a role. 

The fact that each stu

one to whom he can go and discuss 

in confidence anything that is bothering him, is one more 

comforting factor that makes 

retarded offenders want to be part of 

this school. 

By this time next year, many new 

educa

bly have been adopted by The 

Flushing School, replacing other 

components which have outlived 

their usefulness. Such is the strong, 

flexible nature of the school. But no 

matter what changes are instituted, 

the education will c

down-to-earth and practical. The 

size of the school will, in all 

probability, also continue. The staff 

is well aware that the school's 

smallness, intimacy and 

comradeship are keys to the program's success. 

There is one precious component 

that is central in every activity: the 

way that staff members help 

students feel their genuine success. One teache

students need such feelings of 

accomplishment: "These fellows 

have known one failure after 

another all of their lives. When they 

do something good here—I mean 

really good, not just a put-on 

good—how proud they are. They 

want more experiences like that. It's 

like a hunger with them." 

Mental Health 

THEY TACKLE LIMITS AND 

DISTURBANCES AT THE 

SAME TIME 

Being mentally retarded is bad 

enough; being mentally ill, too, 

makes it many times worse. It's not 

just that such double afflictions are 

difficult to treat. The sad but 

undeniable fact is that adequate 

treatment is extremely hard to come 

by; psychiatric professionals in the 

United States often refuse to work 

with mentally retarded persons; and 

mental retardation professionals 

often ignore deeper emotional 

disturbances which may be present 

in their clients. The end result is that 

mentally retarded persons who 

suffer from psychiatric disturbances 

are frequently caught in the 

middle—a middle where all the 

needed services simply don't exist. 

The Rock Creek Foundation for 

Mental Health, Bethesda, Maryland The psychiatrist/director of this 

psychiatric day treatment program 

for mentally retarded persons 

explained why such handicapped 

people are not the most desirable 

clients for psychotherapy: 

Most psychiatrists are bright 

individuals and they like to work 

with other bright persons who 

can become more like their 

psychotherapists. For this reason, 

those having high achievement 

levels—like medical students—

are preferred patients. But when 

a mentally retarded person 

comes for psychotherapy, he is 

quickly "referred away." Such 

referrals are polite diversions, so 

the psychiatrist doesn't have to 

say what he really feels: "Get out 

of my office . . . I don't want to 

talk to you . . . I don't want to 

recognize that you have feelings, 

too." Of course, a retarded 

person will never develop like a 

medical student can, but that 

handicapped person can be 

helped to find an emotional 

stability and a career within his 

range that's every bit as satisfying. 

Unfortunately, most psychiatrists 

fail to see value in such an 

opportunity. 

An administrator, who was 

trained in public health 

administration, then described the 

usual predicament of the men and 

women who are served in this 

agency: 

Many of these people have 

needed psychiatric intervention 

almost all of their lives, but such 

needs were ignored. As young 

children, their aberrant behaviors 

were ascribed to mental 

retardation syndromes. During 

adolescence—when most 

attended special education 

classes—their bizarre actions 

were tolerated just as long as 

such acts were not sexual or 

violent. For example, one young 

lady literally believed she was 

Cinderella, but none of her 

special ed teachers did anything 

about it. The real shock comes 

after these disturbed persons 

leave the special education 

classes. Then, they are rejected 

by one adult program after 

another. When this happens the 

families are forced to keep their 

disturbed children in the home 

with no programs or to send 

them to an institution. That's a 

bitter set of alternatives to face 

after at least 20 years of hard 

work and sacrifice. 

It was frequent situations like 

these that motivated the director and 

administrator to establish the nonprofit Rock Creek Foundation for 

Mental Health in 1973. Today, 33 

young adults who, for the most part, 

are mildly and moderately retarded 

and who have severe emotional disturbances, travel each weekday to 

this day treatment center located on 

the second floor of a building in 

downtown Bethesda. 

At the Foundation, the young 

adults engage in 40 hours a week of 

activities that utilize both the latest 

behavior methods from the 

developmental disabilities' field and 

the best expressive techniques 

employed in psychiatric settings. 

This private, J.C.A.H.-accredited 

facility gets much of its avant garde 

character from a number of 

programmatic twists not usually 

found in day programs for mentally 

retarded persons: 

 There are no separate staff and client lounges, washrooms and general activity areas. Instead, a spirit of 

togetherness is fostered in all daily 

activities. For example, staff and 

clients are encouraged to make 

friends with each other, even to the 

point of lunching or shopping 

together during their free periods. 

 Mealtime programs are nonexistent at the agency. Staff and 

clients go to various restaurants and 

fast food facilities in downtown 

Bethesda, or they "brown bag" it 

together. 

 The agency has no transportation facilities of its own. Clients come to 

the center from all parts of the 

Greater Washington, D.C. area via 

public transportation which they are 

trained to use. 

 No one-way vision mirrors (allowing the staff to secretly watch 

clients) can be found anywhere in 

the facility. Explained the 

administrator: "With the staff-client 

equality we are fostering, one-way 

vision mirrors would be unfair."

63 
Mental Health 

ople who work in 

-

pr

th

weekday hours. There are other 

ad

th

co

no

provide 24-hour care; and the cost of 

th

th

endeavors is to help clients qualify 

for jobs or volunteer work that 

pr

ca

im

sk

to

to parties where the second question 

asked is, 'What do you do?' Since so 

much self-esteem is tied up in the 

answer to this question, we intend to 

help our clients develop such 

meaningful vocational skills that 

they'll be able to answer that second 

qu

Fo

ca

m

di

pe

pr llow: 



to

tim

m

gr



fe

se

m

in

an



ap

developed which covers all group 

an

ce

so



an

30

in

bo

recognized and praised; planned and 

em

an

th

pr

th

sh

co

clients express themselves in ways 

they've never been able to do before. 

 Task Oriented Groups. As 

disturbances are diminished, clients 

are channeled into small, timelimited groups that pursue single 

tra

complete daily 

rk 

cleaning the hallways 

agencies and service industries in the 

Greater Washington area. Since the 

Federal government has many 

serious training and place

grams for handicapped persons,

many of the Rock Creek clients are

eventually given "700 hour probationary placements," which can lead 

 The neighborhood has become 

an extension of the treatment team. 

Many of the pe

the local businesses know the Rock 

Creek staff and clients on a firstname basis. In fact, one fast-food 

facility trains new counter 

employees to recognize the 

capabilities and limitations of Rock 

Creek's clients (e.g., "Make sure that 

John shows you his money before 

he orders." . . . "Sam has just learned 

to count out the proper change for 

his hamburger and shake, so wait 

until he does it correctly.") 

 Every staff member is consi- dered a therapist. Although Rock 

Creek has a rich staffing pattern 

(including psychiatrists, psychologists, psychiatric social workers and 

nurses, special education teachers, 

mental health workers and voca

tional training personnel), even the 

secretaries, receptionists and bookkeepers are expected to provide significant relationships with clients 

who seek them out. Front office 

personnel even take part in program 

activities from time to time. 

The rationale for providing only 

day care treatment is that such a 

ocedure allows the client to make 

e most of his or her active 

vantages: Ties between the client, 

e family and the home

mmunity are not severed; there is 

 need to add staff and facilities to

erapeutic care is reduced. 

The ultimate goal of all 

erapeutic and developmental 

ovides dignity to the client. "We

nnot over-emphasize the 

portance of independent living 

ills—particularly work," the direcr stated. "How often have we been 

estion proudly." 

The programs at Rock Creek 

undation consist of many 

refully executed treatment 

odalities for specific emotional 

sturbances in mentally retarded 

rsons. Some examples of 

ogramming fo

Individual Therapy. Conventional psychotherapy techniques are 

used to help clients understand and 

deal with specific disturbances, and 

all psychotherapy programs are 

designed to treat specific illnesses. 

Most sessions are from 30 minutes 

 one hour long and are held three 

es a week. In some cases, 15- 

inute sessions are conducted with 

eater frequency. 

Group Therapy. Male and 

male co-therapists conduct group 

ssions daily. No group contains 

ore than eight clients and all 

teractions are focused on a hered-now orientation. 

Family Therapies. A flexible 

proach to family relationships is 

d individual styles. Over 85 pernt of the clients are involved in 

me form of family therapy. 

Community Meetings. All staff 

d clients meet together for at least 

 minutes each day. At these meetgs, successful achievements of 

th clients and staff members are 

ergency absences are discussed; 

d problems are aired (anyone in 

e "community" can bring up a 

oblem that seems pressing). Since 

e atmosphere is one of mutual 

aring, the community meeting 

ntributes greatly to the treatment 

process by reducing feelings of isolation and futility. 

 Structured Activity Groups. Art 

therapy, dance therapy, psychodrama and occupational therapy are 

used to help severely disturbed 

educational or service goals. 

Specific aspects of such things as 

sexuality and money management 

are explored; current events 

described in the newspaper are 

explored in depth. Since the groups vel for the data they need, the 

Greater Washington area becomes 

their "classroom." 

 Vocational Program Ladder. Since psychiatric disturbance can be 

extremely "expensive," sapping 

much time and energy from a client, 

there is often a need to "replenish" 

the client. The Rock Creek staff 

does it with real work. The process begins in the center itself when 

clients are paid the minimum wage to successfully 

chores like maintaining the coffee 

urn, vacuuming the floor or 

emptying the wastebaskets. From 

this first, successful taste of work, 

the clients (none of whom have ever 

held a job before) are helped 

through an exacting, step-by-step 

process that ends with either fulltime employment or volunteer wo

that, in the client's view, gives a 

sense of dignity and achievement. 

Small career exploration groups 

travel to industrial settings to 

observe people at work, ask 

questions about working conditions and find out how to qualify for a job 

in such a setting. 

Later, these clients move into the 

community as members of small, 

part-time work crews. These crews 

tackle jobs like 

and stairwells in a 15-building apartment complex. In all cases, the work 

must be real work in the community, 

with the minimum wage received. 

Still later, vocational staff members 

place clients in supervised part-time 

work stations in Federal government 

ment pro-
Mental Health 

't understand

65 

to successful full-time government 

employment. (The U.S. 

Government has been the unsung 

leader in the nation in the hiring of 

handicapped persons.) 

Throughout the carefully graduated vocational process, both vocational counselors and therapy staff 

members perform a detailed 

number of follow-along functions, 

supporting the client and reinforcing 

his or her progress even after fulltime employment is achieved. 

A PROGRAM THAT MAKES 

THERAPISTS OUT OF 

PARENTS 

Most Americans cannot imagine 

what it would be like to have a fouryear-old child who ran through the 

house destroying everything that 

was breakable . . . screamed almost 

incessantly . . . climbed on top of the 

kitchen cabinets . . . fell to the floor 

in a tantrum every time he was 

touched . . . threw his food . . . hit, bit 

and kicked his brothers and sisters . . . 

There are always easy assumptions that can be made to explain 

such behavior: "The parents are 

soft," for example, or "All the kid 

needs is a good spanking." But what 

if the assumptions don't apply? In 

this particular case, the parents—

Philip and Mary Sanders—were far 

from being soft; in fact, they had 

already raised three well-adjusted 

children who had never behaved so 

destructively. And they had tried 

spanking, but such punishment only 

increased this pathetic, tiny tornado's rate of destruction. 

A mother of another child with 

similar behavior explained what it 

was like: 

Here you are, out in your little 

neighborhood, in your little 

house, and you look around 

your neighborhood and you 

look down the street, and there's 

nobody out there you can even talk to about your child, 

because they don . . was thoroughly explained, Mary 

Sanders signed an agreement that 

she would: (1) appear with Jamie 

for each session (every weekday 

morning for more than a year) and 

take primary responsibility for her 

son's treatment as recommended by 

RIP staff members; (2) pay no fees, 

with the understanding that 

n

. And that's kind of hard, too . . . 

It's a very lonely feeling, 

especially for people who don't 

get the help they need when 

they need it. 

Regional Intervention Program 

( I R P), Nashville, Tennessee 

This treatment center has no 

shortage of persons who can help 

families with "behaviorally 

disordered" and "developmentally 

delayed" preschoolers. There's no 

waiting list either. Help begins 

almost immediately after a battleweary parent contacts the program. 

It is a very special kind of help, for 

not only are the many therapists well 

tr ia ned—they, too, are parents of 

children with the same problems. (In the entire program, there are only 

six master's-level professionals and 

they serve only as "resource 

persons.") 

Since 1969, a total of 420 families 

have received help from RIP. Each 

treatment target is, of course, 

individual; however, the treatment 

sequences follow a general pattern. 

Here, for example, is what 

h pa pened to Philip and Mary Sanders and their son, Jamie: 

It began on Monday morning, a 

year and a half ago, when a thoroughly exhausted Mary Sanders 

and Jamie kept an appointment with 

their pediatrician. The physician 

mentioned a film presentation he 

had seen, describing RIP, and 

suggested that Mrs. Sanders call to 

see if Jamie could be helped by the 

program. She called within the hour. 

On the following Wednesday, 

Mrs. Sanders attended an intake 

conference at RIP which was 

c no ducted by a trained parent who skillfully handled 14 checklists, 

authorizations and negotiations. 

Included in the issues which were 

discussed was a "parent 

participation" agreement. After it 

co tinuance in the program 

depended upon her work in relation 

to Jamie and the program as a 

whole; and (3) receive support from 

parents and, in a short time, give 

support to new parents. She also 

agreed to "pay back" the program 

with six months' daily service after 

Jamie's treatment was completed. 

As the intake conference was concluded, Mrs. Sanders was assigned 

a "parent case manager" and a "support parent" and was told that treatment would begin at RIP in two 

days. 

On the first day at RIP, Mrs. 

Sanders and Jamie were asked to 

spend 20 minutes in the 

"generalization training room," a 

simulated three-room apartment—

living room, bedroom and 

kitchen—where she and her son 

were instructed to play with a 

specific number of toys, on cue, 

while two parent observers and the 

case manager watched through a 

one-way vision mirror and 

systematically recorded what was 

happening. 

As soon as the session began, 

Jamie's behavior became violent: 

toys hurtled through the air—some 

struck the mother. The session was 

stopped abruptly with the mother in 

tears. ("I guess they couldn't stand 

seeing a four-year-old beating up his 

mother," Mrs. Sanders said some 

months later.) Immediately, the 

observers and the mother went into 

a "feedback session," in which the 

mother was supported and specific 

acts were discussed. Mrs. Sanders
Mental Health 

ite

barriers. The support parent also 

he

pr

m

ed child and his family ch

C

A RIP parent learns to manage her child's 

behavior while two "veteran" mothers record 

her progress through a two-way mirror. 

and Jamie were than scheduled for 

another generalization training session on the following Monday. 

During the weekend, Mary and 

Philip Sanders received a visit from 

their "support parent," who was 

placed on-call to the Sanders at any 

time, day or night, during Jamie's 

treatment period. In the next month, 

no fewer than 15 telephone conversations took place between the 

family and their support parent. 

Although the conversations 

primarily provided much needed 

emotional support, technical advice 

was given as well. For example, the 

support parent advised the Sanders 

on how to make their home 

"childproof" by storing breakable 

ms and installing gates and 

lped the family develop in-home

ograms having to do with Jamie's

ealtime and night time behaviors. 

On the next Monday—and on the 

days following—the generalization 

tra

"

m

ining and feedback sessions were 

continued. From these sessions, it 

was learned that everybody had 

been unwittingly reinforcing Jamie's 

violent acts by giving him extra 

attention when he committed them. 

With this knowledge, the mother 

and child began a long series of 

regular sessions called "individual 

tutoring." Again, the case manager 

and parent observers first watched 

the sessions and joined Mrs. 

Sanders in feedback, helping her 

develop skills that could turn off bad 

behavior and turn on good behavior. 

Jamie also spent time in an intake 

classroom, where his developing 

healthy behavior was reinforced in a 

group setting. 

After a year of hard work by the 

therapists and the entire Sanders 

family, Jamie began to progress 

dramatically. His violent acts were 

diminished and the childproofing 

devices were removed from his 

home. At RIP, Jamie was promoted 

to a "language/community" class for 

handicapped children and normal 

children who served as models. 

(Since the normal children who 

attend this class are the brothers and 

sisters of the handicapped child, the 

arrangement relieves parents from 

the added expense of day-care.) 

This fall, Jamie is attending a 

public school. His entry into a 

special education class was assisted 

by well-trained parents who serve as 

liaison workers." They set up 

eetings with public school faculty 

members at which they described 

Jamie's progress at RIP and his 

immediate program needs. In 

Jamie's first month at school, the 

liaison workers made three followup visits to the school on the child's 

behalf and remain available as 

advocates should such services be 

needed. 

Since RIP is a dynamic program 

that changes as the needs of the handicapp

ange, the Sanders' experience 

makes visible only the tip of a rich 

program that contains many basic 

concepts which have been shaped 

through the years. Some examples: 

 An efficient, three-level 

organization keeps RIP cohesive 

and flexible at the same time. On the 

first level, all on-line service delivery 

functions are carried out by parents. 

On the second level, the six 

professional resource persons serve 

as a back-up force. The third level is 

a seven-member Evaluation 

ommittee of parents and 

community professionals—elected 

by the parents—who monitor all 

treatment activities and report 

monthly to the Tennessee Department of Mental Health and Mental 

Retardation. 

 The parent-child relationship is the heart of the program. Every program component is constantly 

adjusted so that optimum success 

can be realized in this single, crucial 

relationship. 
Mental Health 

 Intense parent participation keeps the program dynamic. One 

professional explained why: 

"Professional agencies simply 

cannot shift as rapidly. Pro's spend 

time and energy, each developing 

his own professional role which 

'locks' the agency into a more 

constant, unchanging service pattern. 

The only thing that's constant at RIP 

is that parents will always deliver the 

on-line therapies." 

 A management-by-objectives system keeps RIP remarkably 

accountable. For example, "targets 

that are time-bound, numerically 

delineated measures incorporating 

predetermined sequential activities" 

are written for each family-child 

relationship. These targets are 

evaluated every six months. Then, 

by using a unique point system, an 

tasks are performed by parents. 

They serve as intake workers, 

support parents, case managers and 

liaison workers. They are also 

teachers, assistant teachers and 

clerical workers. One parent is even 

trained as a video camera operator 

who periodically videotapes parentchild interactions. 

 A back-up network of six 

consultants who are in private 

practice or attached to outside 

agencies are available on an asneeded basis in the areas of 

pediatrics, psychiatry, child 

psychology, special education, child 

development and speech pathology. 

 The Nashville Junior League provides a number of valuable 

volunteer services to RIP. For 

example, the League offers rent-free 

program space (they own the 

building), supplies volunteers, 

conducts fundraising drives, 

sponsors holiday parties and 

kes 

—assisted in setting up 

ne

The "bullpen" office arrangement at RIP promotes constant exchange of ideas among parents 

and staff. 67 

account of targets made and not 

made is passed to the Evaluation 

Committee which, in turn, produces 

overall reports for state officials. The 

major targets for the complete 

program are rewritten each year by 

the Evaluation Committee. 

 RIP is flexibly data-based. Care- ful measurement of input-processoutput variables are utilized in all 

program operations. However, 

while some data-based programs 

perfect a single, rigid system, RIP 

has developed better than 25 

different types of change-producing 

systems. Always, such flexibility is 

determined by the specific needs of 

each family. 

 There are no fees. While the state 

pays the operating costs (less than 

$10,000 per year), the parent payback plan (a minimum of nine 

hours per week for six months) has 

kept RIP remarkably cost-efficient. 

Over the years, only 15 percent of 

the enrolled families failed to pay 

back their obligations; and many of 

these parents were officially released 

from the obligation because of family tragedies or hardship. 

 A complex system of detailed 

provides emergency funding for 

needs like special shoes and 

prosthetic devices and for families 

with financial hardships. 

 The use of siblings as models has been invaluable in helping 

handicapped children acquire 

appropriate social and language 

skills. Also, the siblings receive a 

richer education than they would 

have received in an ordinary day 

care center. 

 RIP training is seen as "rehearsal training." Successes in the training 

setting are minimized. At best, it's 

only a boot camp setting where 

families and handicapped children 

are prepared for life in the real world. 

The real test of RIP's success ta

place in such settings as the home, 

the grocery store, the restaurant and 

the public school. 

On February 28, 1974, the 

Tennessee Legislature passed a 

resolution calling for the statewide 

expansion of RIP. With this 

mandate, a RIP expansion team has 

worked with area mental health 

centers throughout the state, helping start programs and giving intensive, 

competency-based training courses 

for staff members. In addition, the 

RIP expansion teams have—by 

invitation

w programs in West Hartford, 

Connecticut; Cleveland, Ohio; and 

Branford, Ontario. More expansion 

projects are being planned. 

RIP demonstrates that when the 

service is clear, when all tasks in 

delivering the service are broken 

down into many different jobs (with

exact procedures, targets and time 

limits) and when every task is kept 

under the scrutiny of evaluators, a 

striking thing can happen: A cadre 

of parents with a special need to 

excel may—in some settings—

become more motivated and 

efficient therapists than professionals.
Prevention 

describes. But when it happens, 

money and manpower are wasted. Although this report deals with 

programmatic efforts on behalf of 

mentally retarded persons, it would 

be wrong to end it without 

providing the reader with a brief 

look at the other side of the house—

into the world of prevention that is 

every bit as challenging. 

Prevention Options, Everywhere, 

U.S.A. 

If we, the American people, could 

marshal all we presently know 

about preventing mental retardation, 

and if we could organize and carry 

out all of the options available to us, 

one dazzling achievement would 

important than the savings in dollars 

and cents is the saving in human 

lives. How much would we add to 

human dignity and how much 

would we subtract from human 

suffering were we to cut mental 

retardation in half? We can only 

guess. However, guessing remains a 

poor substitute for actually carrying 

out the options presently available to 

us. 

The following list of options is the 

result of structured conversations 

with a number of prevention experts 

situated across the nation. The list is 

by no means complete, and others 

involved in prevention efforts 

could make many additions.

THE OTHER SIDE 

OF A DIVIDED HOUSE 

An unfortunate myopia is present 

in some who work in the field of 

mental retardation. Sometimes, 

those who help citizens overcome 

or compensate for mental 

retardation have little knowledge of 

two other large groups who are 

working to prevent such handicaps 

from occurring in the first place. 

One group is working on biomedical prevention, while the other 

struggles against environmental 

de rivations caused by low income p

and sociocultural problems. When 

the three groups operate 

independently of one another, the 

field becomes a divided house. 

It is admirable that workers in all 

sections of the house can be so 

enthusiastic about their own human 

service efforts that they have little 

time for other pursuits. But it is 

counterproductive when experts in a 

midwest community-based service 

are found to be completely ignorant 

of a biomedical breakthrough that 

took place in a medical school ten 

blocks away. 

It is also counterproductive when trainers skillfully deliver services to 

retarded clients, but remain 

oblivious to the painful economic 

and cultural barriers that encircle the 

home and neighborhood from 

which they come. Of course, this 

cannot be said about Project FIND, 

the South Bronx Development 

Services Team, and many other 

broad-based services that this report 

emerge immediately: We would 

reduce the incidence of mental 

retardation by one-half. In purely economic terms, the 

annual savings to the American 

people would be enormous. Last 

year, for example, California alone 

spent $900 million on the care of its 

mentally retarded citizens, and this 

was only one of 50 state outlays for 

that purpose. But even more 
Prevention 

 The Ideal Time for Child

earing. Today, there is sufficient idence to show that the incidence 

f disability rises sharply with 

others under 20 and with those 

ver 35. 

Many younger mothers— 

pecially teenagers—are not emonally, socially, economically nor 

iologically as prepared as they 

uld be at a later age. According to 

r. Richard Koch, Professor of 

ediatrics, The University of 

outhern California: 

Quite often with very young 

mothers, the pregnancy has 

caught them by surprise. They 

sometimes tend to hide their 

condition until it shows. By then, 

they are four to five months 

along. They haven't readied 

themselves physically, paying 

little attention to nutrition and a 

wide range of options that could 

have insured the best possible 

For examicient 

rprise. The conception f a child can be a purposeful, 

carefully planned act, one which 

takes into account a series of crucial 

health checks and functions. 

Quite possibly, some 

impediments to such a purposeful 

process can be traced to older fathers 

and mothers who, only a few short 

years ago, did not have all the 

backup health services available to 

their sons and daughters. As a result, 

older parents have not always 

educated their children regarding the 

many relatively easy health checks 

and functions now available. 

 Care of the Unborn Child. Almost all of the workers involved 

in prevention pursuits seem agreed 

on one point: Americans must raise 

their consciousness about protecting 

the fetus in the mother. Researchers 

have come to see that the fetus is 

many times more vulnerable to 

infection and trauma and in need of 

more proper nutrition than anyone 

dreamed was possible 20 years ago. 

For example, excessive drinking of 

alcohol during pregnancy has a 

 indicators 

pre-natal care, the lower will be the 

frequency of abnormality." 

 Anticipating "At Risk" Situations. The day is coming when a motherto-be showing even the slightest 

problem in either her own or her 

unborn child's functioning could 

automatically be transferred to a 

regional unit possessing a 

comprehensive array of the latest 

equipment and services for solving 

such potential "at risk" situations. 

Such a service would take the 

pressure off local health units to 

purchase expensive equipment and 

retain professional services they seldom use. The benefits would be 

twofold: for the local unit, a great 

reduction in the average per-patient 

cost; for the mother and infant, a 

thorough monitoring and 

intervention from the moment 

trouble is diagnosed, during the birth 

itself and extending throughout the 

crucial post-natal period. 

"The mother is the best incubator 

any infant can ever have," Dr. Cook 

means of diagnosing a fetus in the 

uterus. In this process, fluid is drawn . 69

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health for their child. 

ple, they have not had suff

checkups and they often are 

without immunizations that 

could protect them from such 

diseases as German Measles 

(rubella) . . . Many just aren't 

ready. Their biological systems 

may not have matured as fully as 

possible for the task. And having 

a baby costs money . . . 

economic deprivation introduces 

disabling factors as well. 

On the other hand, many 

congenital anomalies begin to 

increase along with the age of the 

older mother. Chromosomes can 

fail to function properly. Mothers 

who have had many previous 

children may develop impairments 

in their childbearing systems. Even 

a woman of 38 who has had no 

children may have developed 

solidification in the bones so that 

there is less resiliency in the pelvis. 

When such things occur, problems 

in childbirth begin to rise. 

 Health Planning Before 

Conception. We have entered an 

age when pregnancy need no longer 

catch us by su

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marked effect on the fetus. Some 

researchers, in fact, now believe that 

alcohol is one of the most common 

cause of defects in the fetus leading to mental retardation. Also, studies 

now show that smoking can result 

in decreased birth weights. One 

physician felt that the warning on 

cigarettes should be modified to 

read, "Warning: The Surgeon 

General has determined that 

cigarette smoking is dangerous to 

your health and especially to 

children in a mother's womb." He 

felt that a similar warning should be 

placed on bottles of liquor and he 

wished that the liquor industry, out 

of concern for the children of the 

nation, would initiate such a 

warning voluntarily. 

One of the strongest

that the fetus needs extraordinary 

protection and care stems from 

recent studies which, according to 

Dr. Robert Cooke, President of the 

Medical College of Pennsylvania, 

"show that when a woman believes 

she is pregnant and the earlier the 

pregnancy is confirmed . . . and the 

earlier she can embark on adequate 

stated. "The transportating of a child in the uterus to such a specialized 

monitoring and maternity unit is so 

much better than the old practice, 

where the local physician and the 

hospital staff blindly hope for the 

best until the baby is born disabled 

and it is transferred to a regional unit after the fact." 

 Genetic Counseling. Today, it is possible to know, through various 

pre-conception tests, what chances a 

mother will have of giving birth to a 

child with specific disabilities. This 

is especially true of parents who are 

carriers of Tay-Sachs disease (a disease which occurs in the descendants of Eastern European Jews and 

which causes baby to degenerate 

rapidly, both physically and 

mentally, becoming blind and 

usually dying before the age of 

three). The screening for this disease 

has been extremely successful in 

many areas of the country. For 

example, only one child with TaySachs disease was born in all of 

California last year. 

It is also possible to utilize a process known as amniocentesis as a 
Prevention 

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Massachusetts, Maine, Rhode Island, 

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throughout the nation, m

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from the amniotic cavity by a small 

needle and syringe. By studying the 

cells in the fluid, it is possible to 

determine better then 100 different 

disabling conditions. However, 

since it is not economically feasible 

to test for all conditions, the 

laboratory technician, genetic 

counselor and parents-to-be should 

know what they are looking for. 

The procedure is most often used in 

determining whether or not the 

unborn child has Down's Syndrome. 

 Newborn Screening. A single drop of blood, taken from each 

fant shortly after birth and sent to 

 adequately equipped laboratory, 

n lead to the immediate prevention 

 seven terrible retardation-causing 

lactosemia, maple syrup urine disse, histidinemia, homocystinuria, 

rosinemia and hypothyroidism. 

lthough a recent Government 

ccounting Office (GAO) Report 

etardation calls for cost-beneficial,

gional, newborn screening centers, 

ly two regions have been 

ganized accordingly. The State 

ealth Department in Portland 

aho and Nevada; while a similar 

onnecticut and New Hampshire. 

If and when such regional 

wborn screening is accomplished

r

any ildren will be rescued from these 

seven diseases. (Forty-four states do 

make it mandatory to test for PKU, 

but they have no laws covering the 

other six diseases.) 

 Lead Poisoning. Since the Federal Government's "Lead-Based 

Paint, Lead poisoning Control Act," 

we have done a heroic job of 

stopping the manufacture of paints 

containing this poisonous metal. 

However, monitoring paint 

production amounts to less than half

the battle. Better than half of the lead 

poisoning in this country can be 

traced to the exhaust pipes of our automobiles. Dr. Robert Guthrie, 

Professor of Pediatrics and Microbiology, State University of New 

York at Buffalo gave a vivid 

description of the problem: 

The Federal Environmental 

Agency reports that one of the 

major sources of lead poisoning in the past two decades— 

affecting small children— comes 

from the tremendous 

contamination of soil and dust by 

the exhaust of tetraethyl lead from 

our automobiles . . . One health 

department professional in 

California, testing the soil 

downwind from one of the 

f eeways, found that one percent 

of the dry weight of the top soil 

was lead. Well, if you have ever 

watched children play in dirt, and 

when you know that a child 

ingesting only a micro-amount of 

this soil will receive a severe case 

of lead poisoning, you can't help 

but become alarmed. 

Dr. Guthrie spoke of other significant tests for lead: 

Some interesting tests have been 

carried out on glacial ice in 

Greenland. By boring deep into 

the ice and by carbon dating the 

ice's formation, it can be shown 

that lead began appearing around 

1940 and its presence has been 

increasing ever since . . . The 

presence of lead now appears in 

the rings of redwood trees. This 

appearance also coincides with 

the increase of automobile travel . . 

Many tests have shown that the 

captive dust on the streets of large 

cities contain an extremely high 

content of lead. 

Such evidence provides us with 

one more option that is well worth 

pursing. But will we pursue it? 

Acting vigorously in our attack on 

somebody else's manufacture of 

lead paint is one thing, but attacking the automobiles which 

are closer to our hearts is 

something else entirely. 

 The Rubella Problem. Not so 

very long ago, rubella—more 

familiarly known as German 

Measles—was seen as a mild, 

three-day illness that simply came 

and went and afflicted almost 

everybody. In 1941, however, 

Norman Gregg of Australia 

astounded the world w

showed that this seemingly benign 

illness could be vicious when 

present in pregnant mothers—

especially when it occurred during 

the first trimester. The children of 

mothers who had rubella were often 

born with multiple handicaps, 

including blindness, deafness, heart 

defects, seizures, cerebral palsy and 

mental retardation. 

At first, many physicians refused 

to believe that rubella could cause 

such damage. However, in 1961, 

proper tools for diagnosing the 

disease were developed and rubella 

was recognized for the damage it could do as seen most dramatically 

in The Epidemic of 1964. In 1966, 

the first rubella vaccine was 

administered to children and by 

1969, the vaccines were licensed. 

Since then, more than 80 million 

doses have been administered—

mostly to children because they are 

the most active carriers of the 

disease. As a result, this country has 

not had a rubella epidemic for the 

past 14 years. (The last major 

epidemic took place in 1964 and 

prior to that time, they occured 

every six to nine years.) 

Does this mean we have won 

over rubella? Definitely not. Dr. 

Louis Z. Cooper, Professor of 

P de iatrics, Roosevelt Hospital and Columbia University, New York, 

explains why: 

Many women are becoming 

pregnant every day without 

being aware of their immunity 

status for rubella and for the 

few who contract the disease 

during pregnancy it's just as 

big a tragedy every time it 

happens. Many children in the 

country still haven't received 

the vaccine, because we have 

yet to work a thorough and 

complete immunization program into the nation's service 

delivery system . . . Regrettably, 

some people have become 

complacent and fail to see that 

the next rubella epidemic is 

always just around the corner . . . 

The tragedy of the situation 

lies in the fact that this disease 
Prevention 

ith Rh-negative 

ix. But 

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could be stopped dead in its 

tracks if we could only organize 

the immunization process into 

the fabric of our society. 

 The First Two Years of Life. One 

thing people should understand—

although they usually don't—is that 

the infant, in the first months of life, 

has a great deal of difficulty 

throwing off infections carried in the 

blood. Dr. Cooper explains why this 

is so: 

When you and I get an infection, it is localized at the point of 

attack so that only one, two or 

three organisms can be found in 

a milliliter of our blood. But 

when a newborn child gets an 

infection, he or she may have 

over a hundred organisms in the 

same amount of blood. There is 

still an absence of a number of 

elements in the blood that can 

localize and control the infection 

as it happens in us. Consequently, 

these organisms may be carried 

into the bloodstream to the brain. 

And the brain, being one of the 

most vulnerable organs in the 

child, becomes readily 

susceptible to all kinds of damaging conditions. 

This, of course, is one more 

reason why it makes sense to see 

that the mother is as healthy as 

possible before becoming pregnant. 

She must protect herself from all 

preventable diseases—not only for 

her own sake, but for the sake of her 

child. 

 Rh Problems Can Be Solved. For years, we have known that 

when a woman w

blood and a man with Rh-positive 

blood conceive a child, they run the 

risk of having a mentally retarded 

child. Dr. Koch and his wife, Jean, 

explain the problem this way: 

Although both parents have 

normal blood types, the mixture 

causes trouble. In most cases, the 

fetus inherits the father's 

dominant Rh-positive blood. 

This causes no problems during 

a first pregnancy because the 

circulatory systems of mother 

and baby are separate and their 

blood usually does not m

at delivery, if some of the fetal 

blood in the placenta 

inadvertently mixes with the 

mother's blood, her system will 

begin forming antibodies to this 

foreign substance. During her 

next pregnancy, these antibodies 

may cross the placenta, enter her 

baby's circulatory system and 

systematically destroy the 

developing red blood cells. This 

causes the release of bilirubin, 

one of the pigments in the red 

blood cells. This substance 

interferes with the ability of 

some brain cells to utilize the 

oxygen carried by the blood. As 

a result, the affected brain cells 

are literally starved for oxygen 

and die. When such a baby is 

born, its tiny liver cannot cope 

T

with the continued destruction of 

blood cells. As the bilirubin level 

rises, the infant's skin becomes 

jaundiced. Such an infant may 

become mentally retarded or 

have cerebral palsy or convulsions. Prompt exchange transfusions, in which a newborn is 

given an entirely new supply of 

blood, can usually prevent brain 

damage. A new vaccine, given 

to the Rh-negative mother 

immediately after the birth of 

each child, can keep her system 

from developing antibodies and ends the possibility of an infant 

incurring brain damage due to 

Rh Incompatibility. (Psychology 

Today, December, 1976)  Other Facts about Prevention. Americans cannot afford to shrug 

off mental retardation as something 

largely beyond their control. Much 

of it is controllable—through 

legislation, through common sense 

and, highly important, through 

greater knowledge of the problem. 

With this in mind, consider the 

following: 

Some countries and Canadian 

Provinces have laws requiring adults to wear safety restraints in 

automobiles. But few show equal 

concern for children. However, 

Tennessee has a law making safety 

restraints mandatory for children. 

Infants are highly vulnerable to 

brain damage as a result of 

automobile accidents, since the 

disproportionate weight of their 

heads tends to turn them into flying 

missiles within cars making abrupt 

stops. 

Motorcyclists are often vehement 

in their protests against laws requiring them to wear crash helmets. 

hey believe such laws are an 

infringement of their right to 

freedom. Yet for every motorcyclist 

killed, several others are seriously 

brain damaged. Much of their care 

is at government expense. 

As noted by Dr. Richard Koch 

and Jean Koch (in Psychology 

Today, December 1976), every American who is so retarded that he 

cannot work will cost society 

$650,000—the money he might 

have earned during his lifetime. 

Hydrocephalus, a condition in 

which fluid is trapped in the skull, 

eventually filling the space the brain 

should occupy, can be corrected by 

an operation. Unless treated, these 

babies either suffer early deaths or 

have severe mental retardation, 

develop enormous skulls and are 

generally confined to an institutional 

bed throughout their lives. 

It would perhaps be an exaggeration to say that we live in a drugoriented culture; nevertheless, drugs 

play a highly influential role in the 

es of a great many Americans. It 

 not only the highly publicized 

ugs like heroin and "angel dust" 

e must worry about. Just as 

ngerous (because we know so 

tle about them) are the many drugs 

 common use in everyday life. 

ntil we know more about what 

ese drugs can do, Americans must 

ad cautiously in their use of them. 

Any competent prevention expert 

uld add more options to this list. 

owever, it is hoped that the ones 

esented here will provide 

ogrammatic and prevention 

orkers with a fresh opportunity to 

crease their interest in one another 

d to advocate for one another as 

ver before. 

Some New Directions 

SOME NEW DIRECTIONS 

The following concepts, attitudes and beliefs have been 

distilled from the "programs that work" described in this 

report. Many are fresh and untested. Nevertheless, it is 

possible—if not probable—that some of them will richly 

influence the delivery of services to mentally retarded 

citizens and their families for years to come. 

Incentives to Families. More and more, agencies and 

governments are creating incentives that influence 

families to keep their mentally retarded children within 

their own homes. These incentives are replacing the 

financial and social incentives which for years have 

motivated parents to send their children away to 

institutions. 

Emphasis on Early Childhood. The first months and 

years of life are crucial to the development of mentally 

retarded persons. This should be recognized by service 

agencies in charge of developing and delivering programs. Services to infants and very young children 

should be given top priority. 

Coordination of Early Intervention Programs.Community agencies should join forces to deliver programs 

to "at risk" and developmentally disabled children 

during infancy and early childhood. Such coordination 

can take place with little or no additional funds and staff. 

In-Home Services. As governments and agencies assign home-aid resources (e.g., respite care, crisis assistance, etc.) a higher priority on their list of services, more in-home services will be delivered to families with 

retarded children than ever before. 

Child Abuse. As some in-home services to families with 

mentally retarded children are increased, the incidence 

of child abuse will decrease.

Parent Participation Options. Parents have a wide 

range of talents and temperaments. The best way to 

utilize parents is to recognize these differences and 

provide them with options which they can choose on the basis of their individuality. The worst: to involve them in 

narrow, heavily structured activities which do not fit their 

best capabilities. 

Assistance for Siblings. Programs should be designed 

to help siblings understand and adjust to their retarded 

brothers or sisters. Here, too, many options should be 

provided. 

Programs for Low Income Families. Services to low 

income families are most effective if they take into 

account the cultural heritage, the dignity and the foreign language problems of minority groups. 

Parent-to-Parent Peer Relationships. Peer group 

education between parents of mentally retarded children 

is a powerful force for good. There is a need for more 

innovative programs based on this principle.

Consumer Advocacy Systems. Families of retarded 

citizens should continue to be the creative force behind 

new and different consumer advocacy thrusts. They 

should also continue to serve as a balance of power with 

service agencies so that they can question administrative 

procedures, make suggestions, reinforce helpful services 

and expose inefficiency. 

Public School Education. The regular, public school 

building is the proper setting for school-age, mentally 

retarded students—except for those students whose 

medical problems rule out such a possibility. 

Early Childhood Education. Inasmuch as the first 

months and years of life are critical to human development, public school education of every mentally retarded child should begin at birth. 

Special and Regular Student Relationships. Peer 

group relationships between special and regular 

students are extremely valuable to all concerned. Such 

relationships should be carefully planned, encouraged 

and used extensively. 

Family-Teacher Relationships. The wide gap which presently exists between families and teachers will 

narrow as teachers and parents work together in planning 

the program direction of retarded students. Here, too, the 

personalities and options of parents and siblings should 

be recognized and options for involvement provided for. 

Regular-Special Teacher Relationships.As a result of 

Public Law 94-142, interactions between regular 

classroom and special education teachers are already 

taking place. These interactions should be developed 

even further, for the benefit of all children. 

Community Referenced Education. Classroom education alone does not prepare the mentally retarded person to live with optimum skill in the community. 

Also needed in addition to classroom activities are wellsequenced, in-the-community assignments. 

Professional Preparation. Colleges and universities 

should increase the number of hours of competencybased, in-the-field education with mentally retarded 

students. At the same time, professors of special 

education should continuously demonstrate and 

upgrade their own competencies in teaching mentally 

retarded children. 

73 
Some New Directions 

Discrimination in Public Schools. All mandates concerning racial discrimination—beginning with the U.S. 

Supreme Court's decision in Brown v. Board of 

Education (1954)—must now apply to mentally 

retarded students as well. 

Special Educators and the Medical Profession.

Competent special educators should become actively 

involved with medical personnel at the birth of a 

mentally retarded child or at the earliest moment an 

infant is identified as such. 

Classes on College and University Campuses. Wellplanned adult education programs for mentally retarded 

persons in such settings will enhance the quality of living for handicapped students and revitalize the education of 

regular students as well. 

Community Attitudes. Further thought should be 

given to the problem of community attitudes. The fact 

that most community residences for retarded persons are 

located in "transitional" sections of cities indicates that 

attitudes towards such handicapped citizens may not be 

as positive as some workers in the field tend to believe.

Tourism and Residential Programs. The more a residential program blends into a neighborhood, the more 

awkward tours of such services will become—for the 

resident and for the touring parties as well. 

Local Responsibilities. For years, communities have 

tended to pass off the responsibilities for the residential 

care of retarded citizens to the state or federal 

government. Now, when some local governments rise to 

the point of wanting "to care for their own," state and 

federal red tape can stand in the way.

Support the Home First. Residential service agencies should do everything possible to help mentally retarded 

persons live successfully in their own homes before 

offering other community residence options. 

Security for Parents. In the past, when parents placed 

their child in an institution, the government informally 

guaranteed that the child would be cared for after they 

died. Similar guarantees should be made for parents 

placing their child in a community residence.

Careful Community Placements. Residential service 

experts have learned that the successful movement of 

retarded adults into the community involves more than 

just placing them in suitable quarters. They must be 

carefully taught to live there. 

Community Residences in Small Towns. It is no 

longer a foregone conclusion that mentally retarded 

citizens from rural areas and small towns will be better 

off living in big city facilities.

Work and Self Esteem. Since the "second question" in most getting-acquainted conversations is "What do you do?", many service delivery agencies should intend to 

help clients develop such meaningful vocations that 

they'll be able to answer that second question with pride. 

Community Redevelopment Efforts. Many retarded 

persons who are incapable of competitive employment 

could be tremendous forces in public works projects, 

according to a new breed of vocational training experts, 

if we organize them effectively and. value them for the 

contributions they can make.

Training Assignments. Some vocational trainers are 

convinced that mentally retarded persons learn best in real on-the-job assignments, rather than in isolated, 

artificial training efforts. 

Self-Advocacy Movements. As mentally retarded 

clients develop to the point where they can speak for 

themselves and represent their own interests, service 

delivery workers must learn to "step back" and become 

less controlling of their clients' destinies.

The "Mentally Retarded" Label. There are a growing number of handicapped persons who deeply resent 

being called "mentally retarded." Workers in the field should become aware of this sensitivity in their clients. 

Artistic Talents.Sometimes, a mentally retarded person 

may possess considerable artistic talents, even though he 

or she is unable to read and write. These talents should 

be encouraged. 

The Mentally Retarded Offender. In many sections of the nation, programs serving mentally retarded persons 

in trouble with the law quickly collapse when funding crises arise. Programs serving these citizens should be made more substantial and durable. 

Retarded Persons with Mental Illness. Citizens who 

suffer both retardation and mental illness have not 

always received the services they need because of 

differences of economy and technology between the 

fields of mental illness and mental retardation. The time 

has come to solve these differences. 

Prevention. If the American people could marshal all that is presently known about preventing mental 

retardation—biomedically and environmentally— and if 

all available options were organized and carried out, the 

incidence of mental retardation would be reduced by one-half.