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Rhonda S. Black & Beverly A. Salas Life and Times of Individuals with Mental Retardation: The Employment
Saga
If we look to the not so distant past, we see a history of lost opportunities for employment and the chance to meaningfully contribute to society for individuals with mental retardation (Murphy & Rogan, 1995). Many issues surround why these individuals have not been more included within our society, particularly in the employment sector. Fears, questions, and concerns abound when looking at these issues. Such questions are: Why would I want to hire an individual with mental retardation? How much cost is associated with various accommodations that may be required? What unknowns are involved in hiring a person with mental retardation? Are there any benefits to my business and to me as an employer? If so, what are they? How will my other employees respond to working side-by-side with a person with mental retardation? I have no training working with this population, how will I know what to do? The purpose of this article is to provide an historical look and insight into the issues surrounding these questions.
Now,
more than at any other time in our Nation's history, people with
mental retardation are actively participating in the economic life
of their communities . . . Various political, economic, and social
forces are currently combining to create a unique opportunity that
we should not disregard. We must expand upon those principles we
know to be successful and summon the courage and resources necessary
to solve the problems we have too long ignored. (PCMR, 1998, p.
15) As
advocates for facilitating change, we must continually revisit what
we have done, what we are currently doing, and where we want to
go in order to make productive changes. As we enter a new millennium
it may be helpful to depict some past and more recent profiles,
snapshots if you will, of the lives, trials and accomplishments
of individuals with mental retardation. Therefore, the purpose of
this article is to examine perspectives that have set us upon this
current stage. Specifically, we will highlight major events across
the past five decades upon a timeline. This timeline will pinpoint
those policies, philosophy, and practices that impacted the lives
of individuals with mental retardation and their families. In addition,
we will use personal profiles of individuals with mental retardation,
their families and significant others as a comparative source of
data. We hope this examination will shed light on past and present
attitudes, and even misperceptions of individuals with mental retardation
as competitive employees and members of society. Each
of the following scenarios represents a creation of a prototypical
family, community, school climate, issues and social attitudes during
that particular decade. Barbara is a young adult woman who during
the 1960s was involved in the initial phases of integrating individuals
with mental retardation into our workforce. Jose, a second-language
learner, went through special education testing processes and the
public educational system during the 1970s. Terrell is a young man
brought up by his teenage mother in a single parent household during
the 1980s. Rachel, born with fetal alcohol syndrome, is involved
in a School-to-Work Youth Apprenticeship in the 1990s. Finally,
what does the future hold for Mitchell, born with Down's syndrome
in the 1990s? These
profiles are intended to encourage reflection concerning what helped
and hindered employment and independent living for people with mental
retardation. By comparing a core of specific information relative
to each decade, we can better assess where we've been, our current
status, and where we may go in the future. In 1966, Barbara Jerry, a 23-year old woman with mild mental retardation, lived at home with her family and worked at a nonprofit sheltered workshop five days per week. Each day in the United States, approximately 30,000 other individuals with mental retardation were receiving similar services sponsored by State Vocational Rehabilitation agencies. It was believed that individuals with mental retardation were incapable of community employment and should be separated from normal workers and settings. Sheltered workshops in the U.S. offered supervision, training, and special care in a protective environment that would help retardates like Barbara learn the skills and discipline necessary to achieve some level of productivity. Her workshop utilized "individual goals and support services in a controlled environment to help her achieve her maximum potential as a worker." Barbara's nonprofit workshop paid her piece-rate for gluing cardboard cylinders, a subcontract obtained from a local business who had difficulty finding workers who would do such routine and repetitive tasks. Barbara's parents were largely responsible for her having had the opportunity for placement in an environment away from the home, which allowed for a small degree of independence. For individuals with less actively involved parents, the outcomes were not as positive. The
Jerrys', a typical working class family, had three children. Barbara,
the second child, was born in 1943 without incident. Even though she
looked normal, she crawled and walked much later than other children
her age. At age three, her parents became concerned as they were still
awaiting her first words. After some testing, the Jerrys' family physician
determined that Barbara was mentally subnormal or mentally deficient,
terms that had recently replaced feeble-minded. Doctors stated this
condition was characterized by a state of incomplete mental development
where Barbara would be incapable of adapting to the normal environment
and would not be able to maintain an existence independently of supervision,
control, or external support. The doctors further stated that this
condition was most likely due to some kind of biologic pathology resulting
in arrested development, which was incurable. Because Barbara would
never be normal, her parents were urged to find a place to leave her
(i.e., an institution) so they could lead their own lives. The Jerrys went against their doctors' wishes and kept Barbara at home, because they loved her and did not want to be separated from her. Their concerns multiplied as they were confronted with (a) long waiting lists, and (b) recent media exposes regarding the living conditions and state of neglect in public-run institutions and training schools. In 1950, when Barbara was seven, Mrs. Jerry read The Child Who Never Grew by Pearl S. Buck. Mrs. Jerry found strength in Buck's acknowledgment of being bewildered and ashamed about her own daughter with mental retardation. Buck's admonition to keep children with mental retardation at home during the early years encouraged Mrs. Jerry. Buck's book started a trend of parent confessional stories about children with mental retardation. Mrs. Jerry especially enjoyed reading Dale Evans Rogers' book, Angel Unaware, about her daughter with Down's syndrome, the proceeds from which helped launch the National Association for Retarded Children (NARC). Interestingly, this growing body of parent confessional literature was leading to the growth of voluntary information and advocacy organizations led by parents of children with retardation. In
1954, the NARC organized radio and television spots sending a new
message about mental retardation that: (a) people need not fear retarded
children, (b) having a child with mental retardation was nothing to
be ashamed of, and (c) children with mental retardation could be helped
to develop their potential with proper education and support. Additionally,
the NARC's first executive director persuaded President Eisenhower
to declare a National Retarded Children's week. In the late 1950's,
A Child is Waiting used mentally retarded children living at Pacific
State Hospital, and sent the message that children with mental retardation
could be helped but only after all the players in the child's life
accept the reality of retardation. As
Barbara grew to school-age, her parents were unwavering in their refusal
to place her in an institution, even though many authorities of that
time touted institutionalization as progressive because practitioners
were treating adaptive behavior. The Jerrys had been closely following
debates concerning whether young people with disabilities truly benefit
from segregated environments. They believed Barbara would benefit
from and develop more rapidly in the loving, stimulating and caring
environment their family support provided her. By the mid to late
1950s, many parents who had chosen to keep their children with retardation
at home had combined forces in demanding services other than institutionalization
for their children. Thus, Barbara's primary school years were spent
attending an educational program in a facility sponsored by the local
NARC chapter. This facility represented her community's response to
parent advocacy efforts to secure educational services for children
with special needs. Year after year, the Jerrys were involved in fund-raising
activities to keep this special school afloat. As these parents worked
together toward a common goal, they became more solidified and started
advocating more for their children's rights. In
1960, at age 17, Barbara finally entered a public high school that
had just created special Work Study classes for students with mental
retardation. This Work-Study program focused on the development of
work attitudes and sought to teach Barbara general work behaviors.
Various vocational tasks were broken down into their component parts,
and Barbara practiced each part over and over again until she gained
proficiency. By the end of the school year, Barbara had learned to
independently gather her materials and then wash, rinse, and dry the
sink, counter, and floor in her classroom. She would then replace
her materials and ask the teacher to check each of the separate steps
involved in these tasks. The teacher used a task analysis checklist
to evaluate Barbara's performance. In Barbara's Work Study classes
she also studied prevocational skills such as personal hygiene, communication
skills, and how to follow instructions. In a 1963 meeting, officials
at Barbara's school arranged for her to advance to a sheltered workshop.
Barbara wanted to be a cosmetologist. However, the workshop was the
only postsecondary opportunity available to her. Scenario
created using information from: (Browning, 1997; Buck, 1950; Doll,
1941; Drew, Logan, & Hardman, 1984; Heber, 1961; Murphy &
Rogan, 1995; Robinson & Robinson, 1976; Rogers, 1953; Tredgold,
1937; Trent, 1994; U.S. Department of Labor, 1979; Wechsler, 1958).
See
Appendix A - 1950s - 1960's Timeline In 1976, Jose was a stocky 16-year old who stood 5 ft. 4 inches in height. He attended a class for students with Educable Mental Retardation (EMR) in his neighborhood high school five days per week. One year earlier, landmark legislation, Public Law 94-142, was passed granting children with disabilities the right to a free appropriate public education (FAPE) in the least restrictive environment (LRE). As a result, each day in the United States approximately 728,000 individuals with mental retardation received special education services in public schools, and no longer in separate educational facilities. However, the least restrictive environment was determined on an individual basis; and for students with mental retardation, this was generally interpreted as a special class within the public school. For the most part, children with mental retardation were separated from non-disabled peers and general education settings. It was believed that specially trained teachers best served these students' needs in special situations. Furthermore, fully self-contained classes would protect EMR children from unnecessary failure, peer rejection, and damage to self-esteem. Jose's special classes had fewer students, thus, offering more chances for individualized attention and a curriculum that would prepare him for the type of occupation he might enter upon leaving school. Jose was born in 1960 without incident, the first son in the Garcia family after four daughters. In 1955, Mr. and Mrs. Garcia moved to Los Angeles from Mexico. Although the Garcias learned to read and write English well enough to perform their respective jobs at the garment factory and wanted their children to learn English they were most comfortable conversing in Spanish. What English they did speak at home consisted of simple phrases. The Garcias were part of a growing number of U.S. Citizens with Limited English Proficiency. Jose had a healthy, happy childhood until he entered school; at which time his difficulties began. Much of school was confusing to him. He did not understand why he had to sit in a chair rather than move around freely and make things like he did at home. At home, the only time he was told to "sit down and listen" was when he had done something wrong. There were very few books in Jose's home, and the books that were there did not have pictures of princesses, elves, or talking animals that wore people's clothes. While most of the other children in his class seemed familiar with these storybook characters, these concepts were foreign to Jose. During his Kindergarten year, Jose did not learn the alphabet as expected. He felt confused because his teachers used many words he did not understand, and he was chided for using wrong words to describe various colors and objects. Jose's mistakes were actually common characteristics (e.g., code switching) of children for which English is a second language (ESL). However, none of Jose's teachers had background or training in how to recognize such characteristics. There were many times when Jose didn't understand what the teachers were asking him to do, and when frustrated, he would cry or stamp his feet. Soon the Garcias received a note from school stating that Jose's behavior problems were causing him to fall farther and farther behind academically, and that he should be retained and repeat first grade the next year. At the beginning of what should have been his second grade year, he was given an IQ test in English not his native language. It was determined that Jose was mentally retarded and the Garcias would need to find a place to educate him. The Garcias were shocked and bewildered. It had never occurred to them that their son was retarded. He didn't look like a mongoloid, and his physical development seemed appropriate for his age. In any event, the Garcias now faced the task of learning about mental retardation and educational options for their child. Jose's teacher told the Garcias to contact the Morenos, a couple who were quite active in the local NARC (National Association of Retarded Citizens) chapter. The Garcia's were relieved when the Morenos explained that institutionalization was no longer the only placement option. The Morenos further explained despite the fact that many states still had laws regarding compulsory sterilization of those with mental retardation (a fear of Mrs. Garcia's); mental retardation was no longer considered an incurable disease or a product of bad breeding for which institutionalization and sterilization were the answers. During the 1960s, there was recognition that individuals with mental retardation had the potential to learn and that many adverse effects could be overcome with early intervention, good parenting, and stimulating learning environments. In fact, Mrs. Moreno shared the re-printed dairies of two young men with Down's syndrome who had been brought up in devoted, stimulating families.These diaries showed how good parenting might produce unusual positive results. The Garcias felt assured Jose could flourish in the caring, loving environment of their home. After all, Jose was walking, talking, and could dress and feed himself without assistance. He did not have violent outbursts or exhibit any self-injurious behaviors. Jose had already mastered the skills institutions sought to address. Now the Garcias faced the task of finding a school that would take Jose. The Morenos pointed them to a few special schools in the greater Los Angeles area. Unfortunately, there were none of these schools in the Garcias' neighborhood. Jose was going to have to travel miles each day to go to a school far away from his sisters and other children he knew in school and in the neighborhood. It wasn't until 1972, when Jose was 12, that his neighborhood school started an EMR class. By this time, Jose was not self-reliant; he almost expected to fail. When asked a question, he would often sit quietly, wait, and watch the other children for cues. His teachers interpreted this behavior as being non-cooperative. Therefore, the Garcias received reports from school that Jose was noncompliant and his teachers would be using a relatively new method, behavior modification, to reduce the frequency with which these situations occurred. Education professionals in this era were just recognizing that misbehavior was often an inappropriate or inefficient use of a teaching technology/strategy rather than inability on the part of the learner. Jose's teachers believed the rate at which a behavior occurs depends on the type and frequency of reinforcement and these schedules of reinforcement could be manipulated. Therefore, they used various reinforcement schedules to modify Jose's verbal behaviors, academic learning, nonacademic classroom behaviors, peer-oriented behaviors, self-help behaviors, and work-oriented habits. Because learning could not be directly observed, it was inferred when the frequency of appropriate responses increased. During this same period of time, much was happening in the larger disability community. When Geraldo Rivera exposed the atrocious conditions at Willowbrook State School in 1972, the Garcias' decision to keep Jose as home was validated. As the country learned how truly handicapping the experience of living in an institution could be, the local NARC chapter became more active. The Garcias and Morenos attended meetings regularly learning about lawsuits regarding inhumane conditions and right to treatment in residential facilities. As institutions were under attack for being segregated and dehumanizing, segregated special schools similarly came under fire. The Supreme Court's 1959 decision that separate is unequal in Brown v. Board of Education influenced cases regarding segregating students because of ability. This was followed by a series of decisions that established the FAPE rights of children with mental retardation. The
Garcias tried to keep up-to-date on any new developments affecting
Jose's education. As a result, they increased their involvement
in the NARC chapter. Their English had been improving and by the
mid 1970s they felt more confident communicating with school personnel.
However, many of their friends and relatives were not bi-lingual.
Therefore, they passed along relevant information and often played
the role of advocate for other parents who had children with disabilities.
As the Garcias heard of various litigation, they became particularly
interested in two court cases in their State of residence, California,
where there were two to three times more children of Spanish-surname
and African-American families in EMR classes than were represented
in the total population. These cases addressed the cultural and
linguistic biases of IQ testing often leading to segregation of
Mexican-American and African American children. Until 1973, IQ had been used as the sole criteria in diagnosis of MR. With current trends questioning IQ biases adaptive behavior was added to the diagnosis. Public Law 94-142 changed that by requiring that multiple tests be administered and reviewed by a multidisciplinary team. PL 94-142 also changed some other things, such as the changes some other things as well. Prior to this law, one needed only to have an IQ one standard deviation below the mean. The American Association on Mental Deficiency (AAMD) also changed the IQ criterion from one to two standard deviations below the mean. Terms used to describe the levels of retardation were now mild, moderate, severe and profound as opposed to moron, idiot, and imbecile. When Jose entered high school in 1975, this new definition was incorporated into Public Law 94-142 declassifying 85% of the individuals had formally met the criteria for students with mental retardation. Therefore, the guarantee of FAPE was granted to all children with disabilities, except for those who had been cured of their retardation. Jose's IQ of 69 allowed him to continue attendance in his EMR class. Approximately half of his classmates were sent to general education settings. This practice met much trepidation by students and teachers. As debates continued about the type of education that was most effective for EMR children, Jose's high school moved from a work-study program to a Career Education Curriculum. The Career Education Curriculum was aimed toward preparing students (with and without disabilities) for role of worker, citizen, family member and for becoming involved in meaningful leisure activities, and developing satisfactory friendships. This curriculum viewed a career as more than an occupation. A career encompassed all the productive activities engaged in during a day and through life. The Career-Education program at Jose's school focused on the development of life skills, affective skills, and general employability skills. In Jose's classroom he learned to wash clothes, cook food, ask for assistance when needed, follow directions, and became more aware of various careers. Jose was rewarded appropriately for each task he learned. Within the school, Jose also explored several occupations. He explored custodial occupations by emptying wastebaskets after school; food service by bussing tables in the school cafeteria, and he was allowed to take an auto mechanics class. What Jose really wanted was a job outside of the school so he could earn some money. He wasn't sure if these prevocational skills (i.e., dependability, promptness, handling criticism, and safety regulations) would help him on a real job. School was so different from out there in the real world. When Mr. Garcia heard that a new program, Special Olympics, was starting in their area, he was overjoyed. He was worried that Jose had no activities or friends outside of school. This seemed like the perfect opportunity. Jose had no motor difficulties, he was a great runner, and Mr. Garcia would like to see those skills more fully developed. Jose signed up; they had training practice each weekend and competition a few times per year. Jose now seemed well on his way. He was receiving some functional academics and vocational instruction in his school; he was involved in Special Olympics on the weekends. His parents had learned about the special educational system. Scenario
created using information from: (Baca, 1990; Beirne-Smith, Patton,
& Ittenbach, 1994; Brolin, D. E., 1989; Brown v Board of Education;
Browning, 1997; Diana v State Board of Education; Drew, Logan, &
Hardman, 1984; Dunn, 1968; Kiernan & Stark, 1986; Larry P. v
Riles, Lewis & Doorlag, 1999; MacMillan, 1977; Mills v Board
of Education, Murphy & Rogan, 1995; PARC v Pennsylvania; PCMR,
1969; Rivera, 1972; Scheerenberger, 1964; Trent, 1994).
In 1987, Terrell Jackson, a tall thin 18 year-old sophomore was involved in community-based vocational instruction (CBVI) program at his neighborhood high school. This program was created through an interagency agreement between his school district and the local Division of Vocational Rehabilitation (DVR). In the past, work study programs had been sponsored by DVR. Now that transition services were mandated by law, schools across the country were responsible for developing and implementing programs to assist the 300,000 students with disabilities each year who were moving from the safety and security of school to the opportunities and risks of adult living. Fifteen
year-old Yolanda Jackson gave birth to Terrell in 1969. Being
young and single, she did not admit she was pregnant, nor did
she see a doctor until she was 6 months along. When Terrell was
born 2 months premature at 3 pounds 5 ounces, he needed to remain
in the hospital a few days. The doctors seemed concerned; Yolanda
hoped there would be no long-term adverse effects. During the
first few years of Terrell's life he was frequently cross and
ill. Because Yolanda did not have a job or insurance, and did
not see a doctor, she never knew if any of these illnesses were
serious. When
Terrell was two years old, Yolanda's mother told her she would
need to find a place of her own. So, Yolanda applied for Aid to
Families with Dependent Children (AFDC) and within a year moved
into her own apartment in a public housing community where several
of her classmates were living who similarly had their high school
experiences cut short by the birth of a child. Yolanda's apartment
was small, dark, damp, had paint chipping from the walls and windowsills,
the faucets were constantly dripping; and no matter how hard she
tried, the roach infestation never completely went away. Terrell
had irregular sleep patterns. Yolanda was concerned that he always
seemed tired and lacked the energy to do things most children
his age enjoyed. Their apartment was loud and it seemed as though
they rarely made it through a night without being awakened by
a loud party or domestic dispute. Therefore, she didn't know whether
Terrell's lack of vitality was due to a medical problem or their
living situation. Now that she was on AFDC, she could finally
take Terrell to a doctor who would accept Medicaid. The
next time Terrell got sick, Yolanda took him to the doctor, who
asked questions about his speech, coordination, and self-help
skills and about their living conditions. At age four, Terrell
was still was not talking in more than single-word sentences.
The doctor explained that there might be some developmental delays;
which is not uncommon for low birth weight babies. She further
explained to Yolanda that low birth weight babies are at significant
risk for cerebral palsy, deafness, autism, epilepsy, and mental
retardation. In discussing their living situation, the doctor
asked about paint chips. Yolanda reflected back to the times when
Terrell was small and putting everything he could find into his
mouth. The doctor mentioned the possibility of lead poisoning
and its association with brain damage, learning and behavior problems,
hearing problems and stunted growth. While it was impossible to
tell conclusively whether these things affected Terrell, the doctor
was concerned that combinations of factors were working against
him. Therefore, she recommended a program, Head Start, a relatively
new program, that provided comprehensive health and education
services for low-income pre-school children. The aim of this program
was to ameliorate some of the delays often experienced by these
children. Terrell and Yolanda most certainly fit the profile and
eligibility requirements. Yolanda
enrolled Terrell in a Head Start program at the Community Center
one block from their public housing complex. She was encouraged
to stay with Terrell and participate; after a few weeks, she felt
comfortable doing so. Together Yolanda and Terrell would make
books using pictures from magazines glued to construction paper.
They had no books at home, so Yolanda enjoyed learning how to
make such things inexpensively. She also learned to make other
toys and learned various games and activities. She even shared
many songs from her own childhood during Leading Circle time.
The director encouraged any kind of activity that would share
each family's unique cultural heritage. It made Yolanda feel good
to contribute to Terrell's class. Things
around their household changed quite a bit during that year. The
importance of reading was stressed, and Yolanda decided that she
needed to become a better reader, and obtain a high school diploma.
Therefore, she enrolled in an adult education program to get her
General Education Diploma (GED). The GED classes were not easy
for Yolanda, but she was determined. She also became a parent
volunteer at Head Start where she was learning all kinds of things.
This was an exciting time for her. She learned about language
development, nutrition and proper diets for herself and Terrell,
and what she could do at home to help Terrell's cognitive development.
At the end of Terrell's first year in Head Start, the director
asked Yolanda if she had considered a career as a Child Care Provider.
The director gave Yolanda a brochure describing an Associate of
Arts (AA) in Child Development offered at the local community
college. The target group for this program was young AFDC mothers
for whom Division of Vocational Rehabilitation Services would
pay the tuition, childcare would be provided, and volunteering
at a supervised Head Start location would meet the practicum requirement.
It seemed too good to be true. This is exactly what Yolanda wanted
and needed. Terrell
started Kindergarten in the fall of 1975. He still didn't speak
much; he usually just pointed to things. Terrell often didn't
understand what his teacher was asking him to do. He was afraid
to ask because his teacher scared him. The more his teacher made
him feel inadequate, the more he withdrew. As time went on, Terrell
learned to become almost invisible. It wasn't easy because there
were so many needy children in his class; they took up most of
the teacher's time. Terrell hated his first two years of school.
When he was at school, he sat quietly and tried not to talk. He
didn't like how the kids made fun of the way he talked, and the
teachers just got mad at him. In
second grade, Terrell's teacher made a referral that he be tested
for special education services. The teacher reasoned that his
speech and language were delayed; he was not yet reading, he slipped
into a fantasy world quite often, and she used the words hyper-vigilant
and withdrawn to describe his behavior. Terrell underwent a series
of tests administered and interpreted by a multidisciplinary team.
It did not surprise Yolanda that Terrell's tests indicated he
was slow. He'd always been a little behind children his age in
cognitive, language and motor tasks. But, the diagnosis of mild
mental retardation seemed inappropriate for him. Terrell didn't
have facial features or anything like other children with mental
retardation she'd known. She remembered the doctor talking about
developmental delays. But, she never thought of these delays as
retardation. A
meeting was called to develop Terrell's Individual Education Program
(IEP). Yolanda had a difficult time making it to this meeting.
She was now working at a Day Care Center and these meetings cost
her a day's pay. This was a stressful time. Not only did Yolanda
have to come to terms with Terrell's retardation, but also their
Medicaid and AFDC cash payments had just ended. They still received
a housing subsidy and food stamps. But, earning slightly above
the minimum wage and having no health insurance did not provide
much security. Yolanda almost felt penalized for finishing school
and going to work. She told herself over and over again; they
would be all right as long as neither of them became ill. The
primary objective of Terrell's IEP meeting was to determine the
least restrictive environment for him. Public Law 94-142 had been
passed two years earlier, so there was no question about whether
Terrell could still attend his neighborhood school. It was decided
that Terrell should enter a special education classroom to "reduce
extraneous environmental stimuli" that might be frightening
him. His IEP goals included self-care goals such as feeding, dressing,
and personal hygiene. Current functioning level was determined
through the use of task analysis. He also had fine and gross motor
goals such as running, jumping, skipping, and how to manipulate
objects like a pencil or a spoon. For example, one of his goals
involved learning (through behavioral chaining) the 18 steps for
the proper use of a spoon. It was agreed that Terrell needed goals
that would get him ready to learn. Terrell's teacher started using
a method called applied behavior analysis (ABA). Research journals
publishing articles about this method were gaining in popularity
and teachers were encouraged to use ABA to visually chart progress
towards accomplishing IEP goals. Yolanda liked the way that sounded,
but was surprised there were no "communication" goals
on Terrell's IEP. Since he began school, she had been told he
was quiet, even uncommunicative. The teachers said it was behavioral.
Yolanda thought he may need a speech therapist, but didn't know
to ask for such related services. After all, these people were
experts in special education; they must know what's best. In fifth
grade, it was decided he wasn't just being difficult and speech
therapy was finally added to his IEP. Terrell continued to receive
special education services in a separate classroom throughout
the 6th grade. Terrell
entered seventh grade and had to adjust to a new school, a junior
high school. Now the LRE now included some mainstreamed general
education classes, usually for electives. His IEP now stated that
he would be integrated into general education art/music, physical
education and woodshop. He was in a "part-time special class"
for academic subjects with one special education teacher who had
the primary responsibility of implementing his IEP. He also attended
assemblies, field trips, and other school-wide activities. Terrell's
IEP stated his arrangements "had the advantage of an unthreatening
academic setting along with integration into the social mainstream."
Research has shown there were social benefits to mainstreaming
that were equal to or outweighed the academic benefits for children
with and without disabilities. As educational debates continued,
Regular Education Initiative (REI) proponents asserted that total
segregation leads to unnecessary stereotyping, unnecessary rejection,
and uninformed educational decision-making. REI opponents stated
that mainstreaming was in direct conflict with national education
goals of increased standards and higher graduation requirements.
Terrell and Yolanda didn't know which was right; they just knew
that Terrell liked being with some of the "regular"
kids that he'd been separated from for so long. Interestingly,
during the 1970s, the special education spotlight was on elementary-aged
students. In the 1980s, the focus shifted to secondary education,
and Transition from school to adult living became a national priority.
Terrell and his age contemporaries became the focus of attention.
During
the 1980s, calls for educational reform were commonplace. Schools
were criticized for being dangerous, ineffective, and with too
many students exiting functionally illiterate. Others argued that
the current secondary school system largely focused on inappropriate
college for the Forgotten Half who do not attend postsecondary
education. Therefore, special education focused on a more functional
curriculum teaching reading, language, and arithmetic in the context
of daily living activities. Special education professionals also
recognized that in order for a behavior to be generalized, the
behavior must be taught across persons, settings, and subjects.
If students were to perform functional skills in the community,
the learning must occur in the community. Community-Based
Vocational Instruction (CBVI) focusing on Transition replaced
Terrell's integrated general education classes. His special education
class focused on functional academics. Each afternoon he would
take the bus to the City and County building where his CBVI program
had a contract to perform custodial services. All of Terrell's
classmates had community work placements in food service, housekeeping,
custodial services or auto detailing. Terrell's CBVI program also
included job placement and follow-up after completion of the program
and school coursework. Terrell liked that he was expanding his
circle of friends to include older people including those who
rode the city bus with him each day after work. Scenario created using information from: (Browning, 1997; Kiernan & Stark, 1986; Kronenwetter, 1993; Mahaffey, Annest, Roberts, & Murphy, 1982; Murphy & Rogan, 1995; Polloway, 1984; Trent, 1994; Wagner, Blackorby, Cameto, & Newman, 1993.) See
Appendix C - 1980's Timeline In 1998, Rachel Gordon, a senior in high school, stood 5'3" with beautiful long brown hair and green eyes. In the early years of her schooling, she had the diagnostic label of mild mental retardation. Now her special learning needs were described using the terms intermittent to limited support. She was well known by classmates in general and special education for her sense of humor and her willingness to try new things. She was involved in a School-to-Work Youth Apprenticeship 20 hours per week at a local hospital, and had been involved in integrated vocational classes within the health occupations cluster since ninth grade. Rachel
was one of approximately 594,025 individuals with mental retardation
who received special education services in their neighborhood
public schools. Since her sophomore year, one half of her school
day had involved vocational education and community-based instruction.
Rachel's parents were responsible for her physical education outside
of school. The other half-day included one period per day where
she received direct instruction in language arts. As part of this
placement, she also received assistance in completing her general
education assignments in science and social studies. Because many
of the assignments in these classes involved cooperative learning
groups, Rachel was able to succeed with the help of her peers
and this additional resource-class assistance. In her general
education mathematics class she was assigned a peer tutor, Melanie.
Several high prestige peers, like Melanie, received an elective
credit for helping another student meet their academic and social
IEP goals. Melanie, senior class vice president, enjoyed Rachel's
company at school social events such as basketball games, dances,
and school plays. A few times, they had done things together outside
of school like going to a movie or the mall. Melanie introduced
Rachel to her friends. Rachel's Circle of Friends widened significantly
during her high school years. She now felt comfortable calling
classmates to do something after school or on weekends. Rachel
also made new friends with co-workers at the hospital. Everyone
seemed to like Rachel. Rachel's
high school had chosen health and human services career clusters
for their School-to-Work program, with an accompanying 2+2 Tech
Prep Program with the local community college. Under a plan by
the U.S. Department of Labor and the Workforce Investment Act,
Rachel's school entered into a School-Business Partnership with
a local hospital creating an interagency agreement with the state's
Department of Social Services. This agreement allowed for paid
apprenticeships. Under this grant, the school needed to increase
the number of women served in such programs. It also allowed students
to have several job shadowing and job try-out experiences before
choosing their career major. Rachel's
beginnings were not as rosy. Rachel was born with Fetal Alcohol
Syndrome (FAS). Her birthmother, Sarah began drinking on a regular
basis in high school. By the time she was 20, she had graduated
to cocaine and marijuana. At the age of 25, she became pregnant
with Rachel. Sarah, like most pregnant women who are addicts,
was a user of multiple drugs including alcohol. She knew that
approximately 5% of all birth defects are associated with prenatal
exposure to alcohol and that alcohol abuse is the leading cause
of mental retardation in the U.S. Unfortunately, Sarah, like 739,000
other women who used drugs during pregnancy that year, didn't
worry because she was a recreational user, and birth defects happened
to children of women who had real problems with drugs and alcohol.
Like many women addicts, Sarah lived with a man in an abusive
and exploitive relationship, whom she feared telling that she
was pregnant assuming he'd leave her. Like many addicted mothers,
Sarah did not seek prenatal care. She avoided medical services
for fear she'd be reported to the authorities for illegal drug
use. As a result, she did not see a doctor until the 6th month
of her pregnancy, at which time she could no longer hide it. By
this time, she was not only using alcohol and drugs, she was also
stressed, anxious, and suffering from depression. When
Rachel was born, there were some obvious physical characteristics
noticed such as mild facial abnormalities, her smaller-than-normal
head size, and she was a preemie -- tiny. Sarah's blood alcohol
level was checked. The doctors were concerned even further when
they found traces of cocaine in her urine. Sarah, with great hesitation
and guilt, admitted to doing cocaine that may have precipitated
the premature labor. Rachel was one of the 2.6 million alcohol
exposed and 459,700 drug exposed infants born that year. With
increased drug use by women of childbearing age in the 80's, there
was also an increase in out-of-home placements for infants and
toddlers. In Sarah's case, Social Services was called almost immediately.
Sarah was required to talk to a nurse and social worker regarding
specific care for her drug exposed infant, and other related concerns
of which Sarah should be aware. Rachel's father was infuriated
that undue attention has been brought to their lifestyle. Sarah
agonized over what to do; he was becoming more abusive. She could
handle the abuse; after all she was an adult. But, what about
the baby? Sarah, getting more depressed, finally agreed to put
the baby up for adoption, at which time Rachel was put into an
emergency placement foster home. Such
chaos and displacement exacerbated the appearance of some of the
common characteristics of infants born with FAS. Rachel was a
very distressed little baby. Her foster parents found her more
difficult to handle during feeding and bathing than most infants
her age. Rachel was extremely irritable; she resisted being held
or dressed, and was not easily soothed. Her foster parents were
concerned that she showed depressed interactions during feeding
and play. During Rachel's first year of life, she showed signs
of delayed development. Social services continued to work diligently
to find suitable adoptive parents. It was clear that with passing
time, Rachel's chances for a stable environment was becoming less
optimistic. At
about thirteen months of age, Rachel's situation turned for the
better. A family had been identified who wanted to meet Rachel.
They were thrilled about the possibility of adopting a child.
They were told about Rachel, saw pictures, and instantly fell
in love with her. They had been on the adoption waiting list for
three years. Eager and most enthusiastic, the family began making
conscientious efforts to lean about FAS infant attachment issues
as well as infant bonding in temporary placements. Rob and Sharon
Gordon, the adoptive parents, involved their two older children
in learning about how to provide a secure, health, and supportive
environment. The children were thrilled at the prospect of a baby
sister. While they were excited about their new arrival, the family
still had a touch of apprehension about whether or not they would
be able to able to meet the needs of a special child. When
14 months old Rachel was placed in the Gordon's home, and formal
adoption procedures began. This was one of the 127,000 adoptions
in the U.S. that year, 15% of which were adoptions of children
in foster care. Rob and Sharon started counseling with a social
worker that told them that the extent of Rachel's mental retardation
would not be known for some time. However, the social worker emphasized
that with a stimulating environment and proper nurturing, Rachel's
special needs could be optimized. They received training and were
visited periodically over the next 12 months. This was all part
of the adoption procedures. Social Services talked to their older
children's teachers; they talked to neighbors, and thoroughly
evaluated the Gordon's fitness as parents. During this year-long
scrutiny, as Sharon and Rob called it, they learned a lot about
Individual Family Service Planning (IFSP) and the support services
available to them. Sharon was strongly impressed by the fact that
family-centered early intervention seemed a powerful means by
which to break the cycle of abuse, neglect, and feelings of abandonment.
The Gordons were aware of what needed to be done to ensure positive
outcomes. In fact, Rachel's restlessness, sleep problems, and
difficulties with transitions made their family even more attentive
to the need for constancy, structure, and socialization for the
next few years. They knew these were critical elements in helping
Rachel make a successful move into school where independence,
trust, and positive self-image are so important. In elementary school, Rachel had many therapeutic needs as well as many social behavioral needs. These needs were addressed in a self-contained classroom (e.g., occupational and speech therapy). The self-contained classes were divided into physical, learning, and behavioral supports as opposed to the traditional categorical groupings such as MR, LD, BD or severe classes. Rachel needed both learning and behavioral supports. Therefore, she attended two classrooms at various times during the school day for delays in language and attentional problems. In special education it was being recognized that a person's disability touches all aspects of their life -- not just in school. Ecological assessment was coming of age during the 80's, so Rachel's IEP team began looking at all the ecologies where the Rachel functioned: school, home, and community. This, of course, meant involving the family in determining Rachel's educational, social, and life needs and it was the beginning of a long-term collaborative relationship among Rachel's school teachers and her family. Mental
health service providers worked with Rachel in the classroom and
at home so that both school personnel and the family would be
involved in the development of social skills and behavioral self
control, her most pressing needs. It was fortunate that her elementary
teachers like her mother, was of calm temperament and made every
attempt to support a balanced school environment that minimized
sources of complications (irritations). Through peer assistance,
highly systematic and organized schedules, and consistency across
all her life spaces Rachel began to be more tolerant of frustration
and external stimulation. Even though Rachel had many friends and good social skills, she was strong-willed and got stressed-out quite easily. Teachers described her behavior as noncompliant. A functional analysis was planned to determine (a) the relationship between her noncompliance and environmental events, (b) what function her behavior served and it also involved, and (c) systematic observation, ABC analysis, and structured interviews. Results were directly linked to an intervention plan. Throughout elementary school many positive, new, and challenging events took place to further impact Rachel's future. Her parents maintained a high profile and constancy in participating with and providing information to the IEP multidisciplinary team that was advocating jointly for Rachel. School and outside friends, educational assistants in school, and an inclusive approach to her education promoted Rachel's growth. She was even introduced to what would become her lifelong vocation and passion… health care, working to help people sick in hospitals. Fortunately, Rachel's middle school embraced school renewal and many of the productive middle school concepts such as an advisory period and interdisciplinary teaming. This School-Community Based Management (SCBM) school used collaborative site-based decision-making and was well known for its high level of parent involvement. Fortunately for Rachel, the teachers at her middle school had received Tribes training to build an inclusive community of learners, based on mutual respect, and appreciation and acceptance of diversity. The stage was set -- an atmosphere of tolerance, working collaboratively, valuing differences, parent involvement, and school staff committed to making positive change. During high school, Rachel and her parents were once again experiencing new ideas, contacts, and opportunities. Her parents listened eagerly as parents from The Association for Persons with Severe Handicaps (TASH) spoke about social inclusion -- something in which they would later become strong proponents. Rachel had a difficult time adjusting to so many different teachers and going to so many different classes. But then again, so did many of her classmates without disabilities. Some even had difficulty with various academic subjects or particular assignments. In response, Rachel's middle school set up a Content Mastery lab staffed throughout the school day with certified special education teacher(s). They helped anyone, not just children with disabilities struggling with homework or other assignments. The Content Mastery Lab teachers were also available to provide support and to consult with the general education teachers on how to make the curriculum accessible for all children. With entry to high school, not far behind was making money and getting a job, transportation and getting around, boyfriends, college and financing -- all those young adult things. After numerous job try-outs, Rachel learned that she did not want to work in food service or in housekeeping; and that she did, in fact, like health care. At the same time, Rachel's older sister taught her to ride the city bus explaining to Rachel how uncool it was to have your parents drive you places. Her sister felt it was important for Rachel to be able to get around the community independently. The Gordons agreed. They wanted her to be more independent as she moved into high school. During the summer between Rachel's freshman and sophomore year, she volunteered at the hospital with her mother. Interestingly, the high school health occupations teacher, Ms. King, was also working at the hospital through a summer externship program called Teachers in the Workplace. Rachel got to know Ms. King and definitely knew she wanted to take classes from her the following school year. During Rachel's junior year, she further learned what was necessary to pursue her specific career major as a nurse's assistant. She took keyboarding, basic office machines, and a health occupations class every semester. Her family was interested in helping her now explore the academic skills she would need for community college entrance. With her older brother and sister willing to serve as tutors, Rachel's parents explored the kinds of campus support available for students with disabilities. Rachel's vocational rehabilitation counselor was involved throughout, giving suggestions, and explaining where financial and learning assistance could be provided. At the beginning of her senior year, Rachel took the ChoiceMaker Self-Determination Transition Assessment, a curriculum-based assessment that was used in her Present Levels of Performance (PLOP). This assessment tool also tied directly to her Self-Directed IEP. Rachel, as usual, was prepared for her next and most important IEP meeting to discuss her future education goals and plans. At this meeting, goals were created that would lead Rachel specifically into a Tech Prep Nurse's Assistant Program at the community college. Her long-term goal was to be responsible for routine personal care (such as bathing and feeding) of residents in a long-term care facility or patients in a hospital. After a few years of supported training, she would take the exam to become a certified Nurse Assistant. While these certificate programs at the community college were usually completed in approximately 6 months, the Gordons had talked to the community college student support department, to plan for an extended period of study. The local school district was responsible for providing transition services until Rachel's 21st birthday. Therefore, Rachel's IEP included an agreement between the school district and vocational rehabilitation to support her for the next two years at the community college. The Gordons had invited the director of the community college's Programs & Services for Students with Disabilities, agreed to this arrangement. As
blossoming opportunities were abounding, Rachel became involved
in the Best Buddies program sponsored by Special Olympics, a well-organized
group in her community. She had been a Special Olympics participate
for over 6 years, but she wanted to participate in the social
as well as physical fitness aspects of their programs. Rachel
enjoyed meeting people outside her high school. She found out
that there was a Best Buddies Colleges program, which promotes
friendships between college students with mental retardation and
non-disabled persons. Rachel thought that might be a good idea
to get advice from someone who wasn't paid to be her counselor.
Rachel was a great model of someone who had not only overcome
many odds in her life but also was an independent spirit willing
to go the distance. She had determination, she had a family who
had faith in her, she had a hard but successful growth from childhood
to young adulthood; and she was now entering into a new world.
Rachel was becoming what all parents would love to see their own
children become: self-sufficient, hard working, and happy. Scenario created using information from: (Bauer, & Shea, 1999; Burkett, Yasin, & Palow, 1990; Gibbs, 1995; Heward & Orlansky, 1988; Hewitt & O'Nell, 1998b; Jenkins & Sileo, 1994; Kirk, Gallagher, & Anastasiow, 2000; Lozada, 1999; Martin & Marshall, 1996; Streissguth, Sampson, & Barr, 1989; Turnbull, Turnbull, Shank, & Leal, 1997; U.S. Department of Education, 1998; Vincent, Poulsen, Cole, Woodruff, & Griffith, 1991; William T. Grant Foundation, 1988). See Appendix D - 1990's Timeline
The Trumans wanted to establish their careers before starting a family. Now in their 40s, they were wondering if they'd waited too long. In 1992, however, they did finally get their wish when Mitchell was born. The doctors explained that his small flat nose, small mouth, and slanted eyes with epicanthic folds are the physical characteristics of Down's syndrome. Mitchell was one of the 125,000 children born with mental retardation in the U.S. each year. The doctors further explained that the extent of Mitchell's cognitive impairment, or mental retardation, would not be known for several years and it could vary widely. The Trumans felt blessed that Mitchell did not also suffer from a heart defect or intestinal malfunction, abnormalities which are quite common in children with Down's syndrome. In 1992, AAMR came out with a new definition that distinguished levels of MR to according intensity of support needed. Whether or not this would have grave impact upon Mitchell and his parents are yet to be seen. Whether or not most states this definition for special education eligibility determination or to define levels of mental retardation is an ever-dynamic proposition. Time is on our side? Before
Mrs. Truman left the hospital a parent group contacted her about
a weekly support group that included parenting classes about the
special needs of a child with Down's. Many more parents attended
than the Trumans anticipated. Down's syndrome is evident in 1
out of every 600 births and that rate increases as the parents
get older. The Trumans were so grateful to not be alone nor so
terribly misunderstood. Their guilt and disappointment was fading
away as other parents talked about their children with such joy
at these meetings. As
we enter the new millennium, the past decade has been inundated
with technological advances. So, it is not surprising that the
Trumans found a growth chart published by Pediatrics on the Internet.
Parents needed normative comparisons for their children with Down's
syndrome like parents of children without disabilities who use
growth charts to determine their child's progress. The Trumans
had accessed other web sites regarding MR and parent support groups
as well. Eventually Mr. Truman, a computer software engineer,
created a web site for parents of children with Down's syndrome.
By 2000, quite a list had been placed on the website of readings
for parents, siblings, and anyone interested. What
is Mitchell's vocational potential? What opportunities await him?
In 1994, the PCMR publication, Journey of Renewal for All American,
reviewed the decade that had passed since its 1983 report and
found that the contemporary employment status of Americans with
mental retardation is one of underachievement. It is clear that
as the decades have progressed, so too have the issues and concerns
regarding individuals with mental retardation as employees. Despite
the undeniable progress of the past 25 years, many problems remain.
The majority of adults with mental retardation continue to be
excluded from the nation's work force, unable to obtain or maintain
employment. Yet, at this time in our history, we have a chance
to dramatically improve the employment opportunities of Americans
with mental retardation. Various political, economic and social
forces are currently combining to create a unique opportunity
that we should not disregard. We must expand upon those principles
we know to be successful and summon the courage and resources
necessary to solve the problems we have too long ignored. These
scenarios briefly described those policies, philosophies, and
practices that have significantly impacted the education, the
services afforded, and the overall lifestyles of individuals with
mental or cognitive impairments. Now more than ever, the vital
importance of a philosophy that drives independence, that helps
define our curricula, that effect teaching strategies, that prepare
the students in our public schools to enter society, that help
to make strong, health, individuals who fit within our communities
(the system) is needed. Brief scenario and questions for the future created using information from: Hewitt & O'Nell, 1998a, b, c, d; Turnbull, Turnbull, Shank, & Leal, 1997).
Appendix A - 1950-1960's Bullets Appendix B - 1970's Bullets Appendix C - 1980's Bullets Appendix D - 1990's Bullets
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