Beyond Special Ed: Options for Disabled Adults
By Marie Holmes

For the past decade, colleges, universities and other institutions have been required, under the Americans with Disabilities Act, to provide reasonable accommodation for the persons with disabilities whom they employ and serve. Most schools comply with the federal legislation through an office of disability services charged with providing everything from texts in Braille to a note-taking assistant for a student with a broken arm. The recent spat over the College Boards decision not to flag the SAT scores of students who take the exam under accommodated circumstancesextra timeis evidence of the breadth of the field of special education and the diversity of students served. The concerns of a college-bound dyslexic student, after all, are vastly different from those of the parents of an autistic child.

Disabled children do not graduate at age 18, says Carol Kasmin of the League School. Typically, says Ilysa Kramer, Clinical Director of the Morgan-Stanley Day Treatment Program at the League Center, this population says in high school until theyre 21 or 22. They age out rather than graduating.

And when these more severely disabled special education students do leave the system, where do they go?

Not as long ago as one would like to think, developmentally disabled persons were often institutionalized in places such as the infamous Willowbrook School in Staten Island, which closed its doors in 1987. Geraldo Riveras television cameras caught images inside its doors that sparked a public outcry across the nation, forcing politicians and policy makers to take action. In 1983, Governor Cuomo stated that Willowbrook, where living conditions amounted to human rights violations, must close its doors. In 1975, the State passed the Willowbrook Consent Decree, sparking a wave of reforms in the state and across the country.

While change could not come quickly enough for persons trapped in these inhumane conditions, today, less than two decades after Willowbrooks closure, deinstitutionalization has taken a firm hold in the field.

Despite shrinking education budgets, developmentally disabled persons and their families can now choose from a variety of programs to suit their individual needs. Increasingly, the goal of social workers, clinicians and counselors is not only to bring these persons to the greatest level of independence that they can reach, but also to help them become active members of their communities.

For lower-functioning persons who need constant supervision in a more structured environment, a day treatment program is usually the best option. Terri Ross, of the Queens Center for Progress (QCP), formerly United Cerebral Palsy of Queens, explains that many of these consumers need hand-over-hand assistance in completing the most rudimentary daily tasks. Because their disabilities have left them physically contracted, special attention is paid to the act of eating. One of the problems, says Ross, is [that] people aspirate food and get food in their lungs and get pneumonia. The staff does not, however, devote entire days of instruction to chewing and swallowing. We want to do it creatively, says Ross. Physical and speech therapy sessions are supplemented with music, art and even horseback riding, all activities designed to benefit physical and emotional comfort.

Its amazing to watch people who have severe contraction get on the horse and watch their limbs loosen up with the movement of the horse, comments Ross.

Persons with behavioral problems might also benefit from the highly structured environment of a day treatment program. The League Center runs a program for adults, ages 18-65, who have a dual-diagnosis of a developmental disability and a psychiatric conditionautism and depression, or retardation and schizophrenia, for example.

We get the people who dont make it in other programs, says Kramer. We focus on the behavior that comes out of that [diagnosis]. Consumers work on daily living skills, such as personal hygiene and cooking, at the same time that they learn the ropes of basic social interaction. When one man politely shook hands and introduced himself, the staff praised his progress.

Although now out-of-vogue in the field, the League Center continues to make use of time-out rooms, where consumers can take out their aggression on the padded walls before their behavior escalates to the point that they might hurt themselves or others. Constant supervision and meticulous documentation assure that the type of isolation and abuses that occurred at Willowbrook will not be repeated.

While such emotional difficulties are inherent to their conditions, some of this aggressive behavior has been learned in institutional settings. Among the consumers that the League Center serves, several are former Willowbrook residents.

One consumer, recalls Kramer, was working with a staff person, naming different objects depicted on flashcards. When shown picture of a ruler, he quickly identified the item: Thats what you use to hit me.

Undoing such damage can be a lengthy process, and success is a relative term. Many day-treatment program participants are eventually able to move on to less restrictive settings, while others remain in the program for years. The ultimate goal, says Kramer, is to get them out into the community.

The next step is often a day habilitation program, in which consumers, supervised by trained staff, spend more time outside their treatment centers, using public transportation and doing volunteer work, such as gardening or sorting clothes for the homeless. Another option is what is called a sheltered workshop, in which consumers, under supervision, complete piecework tasks for modest pay. At the League Center, consumers sat grouped at tables, listening to the radio as they assembled ballpoint pens. Their modest earnings, notes Kramer, allow them to take part in the local economy while at the same time increasing visibility of the developmentally disabled.

The least restrictive option, next to unsupervised competitive employment, is a supported work program. A staff person accompanies a consumer to the workplace and provides the necessary support while he or she adapts to the new working environment. Supported work might also take place in a group, with one staff person supervising several consumers in the stockroom of a clothing store, for example.

The whole vocational rehabilitation movement started after the Second World War, to rehabilitate veterans, explains Charles Houston of QCP. In the last twenty years, it has become the dominant model in programs for disabled adults. What most agencies like us are doing right now, says Ross, is done through a supported work model.

The government agencies that fund and supervise us are encouraging supported employment, she adds, because its a more integrated model.

While the great majority of these consumers live in residences run by organizations such as the League Center, QCP and others, gone are the days of cloistered institutional life. Even seriously handicapped individuals can find programs that allow them to get out into the city and perform some kind of work.

Medicaid funding covers the cost of these programs for the consumers, who are also usually eligible for SSI benefits. Families who are looking for help in transitioning a young adult from a special education program or occupational training center can contact the office of Vocational Education and Services for Individuals with Disabilities (VESID). Because the State Department of Education is responsible for both special education in the schools as well as services for adults, the transition from the schools into an adult program is a fairly established process.

Waiting lists can be long, but the good news, according to Ross, is that metropolitan New York is a very service-rich environment, enabling many people to find a good fit with a program in their own neighborhoods.#