JFK then threw the power and leadership of the Presidency behind the budding movement to improve the lives of mentally retarded people when he declared in 1963, “Although retarded children may be the victim of fate, they will not be the victims of our neglect.” Another sister, Eunice Kennedy Shriver, established Special Olympics in 1968, which has become an international program of athletic competition and physical fitness for children and adults who are retarded. The family also set up the Joseph P. Kennedy Jr. Foundation, which sponsors other programs.
As U.S. Attorney General in 1963, Robert F. Kennedy told a Congressional committee: “We visited a state hospital for the mentally retarded on a bright April day when you would have expected all the children to be playing outside. The children were inside, standing in a room which was bare but for a few benches. The floor was covered with urine. Severely retarded patients were left naked in cubicles, which suggested kennels.…Patients were washed by a device resembling a car wash.…The only toilets for the approximately seventy patients in a large ward were located in the middle of the room, permitting no privacy. The hospital’s hard-working but inadequate staff could provide at best only custodial care.”
Not all residential institutions were so inhumane, but institutionalization was the order of the day in the 1960s. Buildings were expanding to meet demand — each institution for the retarded averaged 340 people waiting for admission, as Ms. Buck wrote in her 1965 book, The Gifts They Bring (written with Gweneth Zarfoss about the positive potential of people with mental retardation).
For those who remained at home with their families, public schools provided little more than babysitting service. The “special ed kids” were isolated in classrooms of their own, or even in separate school buildings, away from their brothers, sisters, and neighbors. Many public schools refused to enroll children who were mentally retarded when they reached the usual age for kindergarten or first grade because they were considered “not ready” for school until they were older. After school age, some communities offered sheltered workshops where retarded adults worked alongside other retarded adults, assembly-line fashion, routinely sorting silverware, stuffing envelopes, or packing boxes of widgets.
The 1970s heralded a public outcry about inhumane conditions at large institutions like the one visited by Robert Kennedy. The demand for better treatment reached a crescendo and drove the “demstitutionalization” movement. Institutions like New York’s Willowbrook received such media attention that scandalous living conditions could no longer be ignored. By the end of the decade, fewer than four percent of Americans with mental retardation lived in institutions.
At the same time, parents of young children with mental retardation began to look around at institutions, public schools, and sheltered workshops. “Our children should not be doomed to a lifetime in an institution,” parents protested. “They deserve better than that!..And why do they have to stay home from public school until they are nine or ten when we’re paying taxes for all our other children to begin school at age five?…Can’t they do more than sort silverware in a workshop all day?”
Just as the 1960s and 1970s launched the expansion of rights for minorities and women, the rights of people with mental retardation would become recognized and secured in the law. But unlike minorities and women, most people with retardation needed advocates to speak on their behalf. Innovative educational programs resulted from parents banding together and confronting legislatures and service providers. Early intervention (or infant stimulation) programs for developmentally delayed babies began in the early 1970s largely because parents demanded that their children receive a head start on their education. Few had heard of Skeele and Dye’s earlier work, but most knew that if federal Head Start programs were helping economically deprived children, the same early start could benefit then-preschoolers as well.
Historic legislation was passed in 1973 and 1975 to correct past injustices. The first was Section 504 of the Rehabilitation Act of 1973, which prohibited discrimination against handicapped persons in federally funded programs and protected rights to education and to participate fully in community life. The Education for All Handicapped Children Act of 1975 (Public Law 94-142) guaranteed a free, appropriate education to every American child, regardless of handicap, an education “designed to meet their unique needs.” The goal of this law was to provide children who have special needs with individualized educational plans, created jointly by parents and professionals. Children with disabilities were to be educated in the least restrictive environment — meaning that they were no longer to be segregated away from other children. The law also applied the right of due process (the constitutional right to a fair hearing by an impartial person) to all decisions about special education. Until this legislation, due process in schools had been ignored as children routinely were deprived of educational services, expelled from school without explanation, or labelled “ineducable.”
Richard Nixon declared a national goal of reducing by half the incidence of mental retardation by the end of the twentieth century. But setting goals and passing laws mean little unless they are backed up by a commitment of funds and will, as parents quickly learned. Without adequate funding, improved educational opportunities guaranteed by PL 94-142 were empty promises. As the 1970s became the 1980s, parents again had to become a driving force — writing to legislators, speaking before school boards, occasionally marching peacefully with their children in tow — to see that educational programs for the mentally retarded were funded.
Four months after the 1981 inauguration, the Reagan administration announced its intention to repeal PL 94-142. That misguided effort failed, but the administration attempted in 1982 to weaken the law by issuing restrictive regulations (to allow states and local school systems to set their own schedules for implementing “free and appropriate education”; to diminish parental participation in educational planning; to remove handicapped children from classroom on the basis of their being “disruptive”; and to reduce health-related special services).
After fighting so long and hard for the enactment of PL 94-142, parents and educators were not about to sit back and let it be gutted. Washington received thousands of letters and phone calls from angry parents and professionals. This outpouring of protest forced Reagan’s Secretary of Education, Terrel H. Bell, to withdraw most of the proposed changes. But throughout the rest of the 1980s, the Federal government footed only a small portion of the total special education bill, leaving individual states and localities to respond in patchwork fashion. The irony was that, by the 1980s, educational researchers had clearly demonstrated the value of mainstreaming students. The Educational Testing Service of Princeton, for example, conducted a three-year study which showed that both handicapped and non-handicapped students benefit from integrated school settings.
Another piece of landmark legislation was the Americans with Disabilities Act of 1990. Like its predecessors, its net effect will depend on commitment and dollars. The law is not backed by Federal money, but private businesses must make a good faith effort to bring down barriers and make workplaces more accessible to disabled individuals. Some business leaders initially cried that following the letter of the law would be prohibitively expensive for them, but most are finding that not to be true. And many business people have come to realize that workers with physical and mental disabilities are often more reliable employees who cause less turnover than others.
Since the mid-1980s, the concept of “supported employment” has begun to grow. Adults with mental retardation are assigned “job coaches” who help them find a job and learn the precise skills to hold it. Once the worker learns the ropes, the job coach steps back and moves on, leaving the worker responsible to the employer. A number of major businesses (Marriott, Pizza Hut, McDonald’s, Boeing, United Airlines, and IBM, to name a few) have hired thousands of mentally retarded employees through supported employment program. In one instance, Pizza Hut hired 1,012 disabled workers (73 percent of whom were mentally retarded) and found that they stayed four to five times longer in the job than non-disabled workers. This lower turnover saved Pizza Hut over $2.2 million in recruiting, hiring, and training new employees.