Nancy Wyant knows how difficult it is to care for a disabled child at home. "It's like taking care of a 20-year-old baby," she says of Rhonda, her severely mentally retarded daughter. Rhonda attends public school now where she is being taught to care for herself, and she enjoys the company of her friends there. Federal law guarantees Rhonda a place in public school special education programs until she turns 21, but then she will "age out" and her mother worries about what is next.

The next step for Rhonda should be a day training program to reinforce the skills she learned in public school — things like brushing her teeth and washing her hands. The nearby Franklin-Williamson Workshop in West Frankfort has run such a program for a year, after Wyant and other parents pressured lawmakers for the necessary state funding. Now Wyant worries that there will be no place for Rhonda. "When my daughter gets ready to leave public school, I fear that the program will be filled. It is now," she says. Without the program she thinks Rhonda will regress. And Rhonda will miss the social contact she now has at school.

Wyant and her daughter are not alone. According to the State Board of Education, more than 30,000 mentally retarded students are now enrolled in public school programs across Illinois. All will "age out" by the time they reach 21 and require replacement services. Day training programs, such as the one needed by Rhonda already enroll 4,200. Another 900 to 3,000 — depending upon who counts them and whom they count — remain unserved. May will bring a new batch of graduates, some of whom will end up sitting home watching television while they wait for a spot to open up.

The lack of services frustrates Gail Kear, director of the Franklin-Williamson Workshop. Besides its 10-slot day training program, the workshop offers programs ranging from vocational development to sheltered and supported employment where clients can earn some money. Franklin-Williamson serves 140 persons in the two-county area, but Kear guesses that another 500 to 600 people within that area require workshop services. "There are hundreds and hundreds of people out there not being served," Kear comments. Filling vacancies at the workshop raises questions for Kear. "Which is the priority? Someone just getting out of school or someone who has been out 10 years? It's a tough question, and there isn't an answer," Kear says. "We have to make the choice every time a spot opens, and we don't like having to make it," she continues.

Waiting lists, Wyant's worries and Kear's frustrations all illustrate the problem. Federal law guarantees services in public school special education programs for the retarded until they turn 21. Then they are on their own, forced to seek community services that are neither adequate nor guaranteed.

Kear believes the retarded should be helped to reach their highest level of independence. The Illinois statutes agree. The Illinois Community Services Act states that the goal of the state is to provide services "to strengthen the disabled individual's independence, self-esteem and ability to participate in and contribute to community life; to insure continuity of care for clients; to enable disabled persons to access needed services." David Stover, executive director of the Illinois Association of Rehabilitation Facilities, points to a problem in the law. "It doesn't say they have to provide them, it says they may," he explains, and that distinction allows many people who have exited the public school programs to "fall through the cracks" and come up empty in the search for services. Department of Mental Health and Developmental Disabilities spokesman Donald Neltnor acknowledges the problem. One department goal, he says, "is that people who will lose out will be a bare minimum. It's our job to make those cracks as little as possible; now they're pretty wide."

Rhonda is only one example of a large and growing group affected by the lack of services. It's "like a baby boom," says Don Moss, executive director of the Association for Retarded Citizens of Illinois. Carl Suter, executive director of the Governor's Planning Council on Developmental Disabilities, says that this year probably 7,500 developmentally disabled persons will leave school and require adult services. His figure includes persons who have had speech therapy, those who are blind and those with hearing loss, but Suter cannot isolate the number of retarded. The State Board of Education identifies 6,700 people aged 18 to 21, including almost 4,000 retarded, who will age out of federally guaranteed programs in the public school system soon. Many will need day training programs.

Local agencies like the Franklin-Williamson workshop, Progress Resources Center in Decatur and Pilot House in Kewanee provide day training for the retarded under contract with the state Department of Mental Health. The state pays $5,712 per slot. Moss says that Gov. James R. Thompson's proposed fiscal 1988 budget funds only 450 new day training positions, too few to serve even those now on waiting lists.

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Not only are there too many candidates for too few slots, but those aging out must compete with older disabled persons for the scarce day training space. More than 3,000 developmentally disabled, many abandoned or with elderly parents, now live in nursing homes that may not be licensed to care for them. These people must receive day training services outside of the facility they live in, according to federal Title 19 regulations, and the federal government threatens to pull all Medicaid funds from Illinois if that criterion is not met. Federal Medicaid money currently flows to the Department of Public Aid, which in turn directs that money via contracts to nursing homes. The homes contract out for day training at a rate established by the Department of Mental Health for those needing it; for example, Kear's workshop holds contracts with five nursing homes.

Mixing the two groups, those aging out and nursing home residents, may not be the best policy. Day training programs, such as the one Rhonda hopes to enter, are easily filled by nursing home residents, and age differences and ability levels seperate the two populations. "I'm wondering if it's wise to mix these groups,'' Wyant commented; "I guess I'm very protective of those kids and the type of programming we wanted for these individuals.''

The retarded are not the only ones who suffer from the lack of services. Parents, especially single parents, who have chosen to keep their retarded children at home also suffer when their children "age out" of the public school system and have nowhere to go. Without the school program or a day training program, the child is home all the time and the parent gets no break. "It's a constant demand on you both physically and emotionally; the drain is monumental with no respite,'' Wyant explains.

The lack of services for those aging out also increases the likelihood of people turning to state developmental centers, where residential care is high-priced for the state. David Stover says that "it's an expensive proposition to keep disabled persons in state facilities," but in the last year, he says that 250 developmentally disabled persons entered state institutions. The Department of Mental Health concurs. In other states the reverse is true, according to Moss, with few entering institutions and many exiting to community programs. Although integrating people with developmental disabilities into the community costs money, Stover believes it may save money in the long run. He projects the yearly cost of community programs at about $6,000 per person compared to $40,000 per person in a state institution. "It'll never cost more to have them in the community than in state facilities," he says.

Proposed solutions call for more money and facilities for the retarded. "We need more money, of course," Moss says. He notes that the state has invested money for special education students from age 3 to 21 and, he says "to stop now is fiscally irresponsible." Moss and his organization propose expanding day training programs to serve 5,000 nursing home residents and the 3.000 who have already aged out and are without services, all at a state cost of $27.5 million.

Stover and Moss also propose long-term solutions. They plan to push for a state law that guarantees the disabled state support to reach their highest level of independence. That would require $300 million to $600 million in new dollars, according to the Department of Mental Health, and that would be at least twice the current budget for community programs. With the new money, the department could "increase dramatically the number of people being served and allow the system to become what its planners envisioned it to be," says department spokesman Neltnor. New programs to meet community needs and more advanced training programs could also be offered. Moss anticipates that state support at the high level he proposes would meet all day and residential program needs and eliminate waiting lists. The cost is high, but he says, "It doesn't cost anything to get it on the books, and that's what we want to do this year."

Another solution to the problem of students aging out is the introduction of "transition planning," the process of preparing students for their adult years while still in school and establishing the programs they need before they leave school. In a 1986 study the Governor's Planning Council defined the process as "involving a partnership of consumers, school-age services, post-school services, and local communities (employers, neighbors, etc.) that results in maximum levels of employment, independent living, integration and community participation." The council has recommended that each student be assessed and his or her educational and vocational needs planned while in school and followed up after the student leaves school. Department of Mental Health Director Ann Kiley agrees with that approach. Her department is working with the planning council on a "program to link with students way before they leave special education" by planning for students and avoiding program waiting lists.

Legislative action on the aging out issue remains uncertain, but Rep. Woody Bowman (D-4, Evanston), chairman of the House Appropriations II Committee, expects the issue to be talked about. "I'm not sure I can predict what will happen, but we need to come to grips with it," he says. "We're all amateurs at this issue, and we don't have a lot of time," Bowman admits. He expects the legislature to play referee if the agendas of advocacy groups and the governor's planning council are not congruent, "a role we wind up having thrust on us by default." Senate Minority Whip Jack Schaffer (R-32, Cary) hopes that the issue will be addressed but did not appear confident that any long-term solution would be adopted. He says that very few members of the legislature are aware of it; some legislators equate the term "aging out" with pensions for the elderly. "I'm sure we'll get some additional funds, but I'm equally sure it won't be enough, but we'll fight on," he adds.

In the meantime, parents whose children are losing the guaranteed public school program are turning into activists and lobbyists, unwilling to accept that services are unavailable. Some start their own support groups such as the not-for-profit Parents Association for Handicapped Children founded by Elizabeth Marguerite four years ago in Chicago's northwest suburbs. The group's 2,000 members write letters and lobby legislators to gain more services for the handicapped. Marguerite's 20-year-old daughter, Julie, will soon age out of her public school program. "I'm afraid of what will happen if my daughter can't get in a program," Marguerite says. Julie needs a day training program, and her name went on waiting lists two years ago. Despite discouragement, parents such as Marguerite fight on. She says: "Now we know how to fight; we deal with problems ourselves. But it's irritating after a while to be a politician along with everything else. I love my daughter. It sounds like such a burden, but I wouldn't trade her for anything — she's given me so much joy."

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