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Challenges for adults with autism

The Bergen Record

A bus comes to Jonathan Lam's home in Tenafly every weekday morning and takes him to a private school for autistic children in Rockleigh. His education is paid for by the Tenafly school district. It's an entitlement mandated by law.

But four years from now, when Jonathan turns 21, the entitlement goes away. So does more than half of the money the government pays for his care. So does a guaranteed place for Jonathan to go during the day.

And if Jonathan's parents don't plan ahead, so does all the progress their son has made over the course of two decades -- the very skills he needs to find his way in the world.

"When the bus stops coming, there will be nothing," says Jonathan's mother, Natalie. "It's scary."

The public face of autism is young and cute. When most people think of autism, they think of children. But children grow up. They stop being cute. At 21, they stop getting the help they need.

"It's like falling off a cliff," says Larry Lam, Jonathan's father.

North Jersey suffers from a severe shortage of day programs that cater to the specific needs of autistic adults. The situation is even more desperate for those who need a place to live: There are 8,000 developmentally disabled adults on the waiting list for group homes or supervised apartments.

These problems will get worse in the coming years as the first wave of what some experts call the "autism epidemic" reaches adulthood.

For many parents, it's a race against time. Geoff Dubrowsky's autistic son is only 11, but he's already worried.

"I can't die without knowing that my child is in a safe environment where he knows he'll be protected," Dubrowsky says.

People with autism age out of entitlement programs at a time when many are just coming into their own. At 21, many have attained a level of maturity that eases some of the problems they have fitting into their communities. Their expensive education is finally starting to pay off. Many are ready to hold jobs or learn how to live on their own.

"How do you tell a parent there's nothing for their child?" asks Leslie Long, director of adult resources for a leading advocacy group, the New Jersey Center for Outreach and Services for the Autism Community, or COSAC.

"It's a dilemma nobody wants to deal with," she says. "But you have kids aging into a system that's so ill-prepared. Parents will be unemployed because they'll have to stay home with them. It's tragic."

Planning is crucial

Parents are forced to navigate an often tangled bureaucratic system in order to get on the right waiting lists, secure available money and apply to suitable programs. The problem is, many parents are so overwhelmed caring for a child with endless needs they can't see past the end of the week, let alone plan ahead five or 10 years.

The price of a rocky transition to adulthood is high. Experts say autistic adults with nothing to do will regress. Faye Schwartz Grossman watched it happen to her son, Daniel.

In 2004, when Daniel Grossman aged out of the Advantage Program, an academic and vocational training school in Ridgefield Park, the Teaneck mother says she was assured that her son would be able to get a job. After all, he'd already worked shelving videos and CDs at the Fort Lee Library and sorting mail at Englewood Hospital and Medical Center.

But he fell through the cracks when it came to adult programs. Though he can prepare a meal for himself, walk alone to the neighborhood synagogue for evening prayers and converse intelligently about his favorite subject, music, he doesn't know how to make friends. Some of his verbal quirks -- he raises his voice when he's excited and asks the same question again and again -- make him different from other 23-year-olds.

He was too smart for the available slots in sheltered workshops, where the work would have bored him, and the other workers -- developmentally disabled adults without autism -- were too noisy for him. On the other hand, he didn't have the social skills to succeed in a job without support. Grossman says the state Division of Vocational Rehabilitation offered to have a job coach help her son adapt to a new job -- but the coach would be able to spend only 30 hours total with him.

"Daniel would love to work around music," his mother says. "He could conceivably work in the music department at Barnes & Noble. But give him only 30 hours to get used to it and it's not going to fly."

So the young man was stuck at home during the day while his mother, who teaches middle school in Maywood, worked.

"He was going crazy," says Grossman, a single mother. "It was extremely frustrating."

He began having temper tantrums. He clung to his mother when she returned home from work, and to his younger sister, Ahuva.

"He became a little bit more physical," his mother says. "He wouldn't do this in public, but, within the family confines, he'd strike out. He'd hit. Which was never, ever an issue before."

For two years, Grossman could find nothing for her son.

She says she got "a lot of misinformation" from caseworkers -- a common complaint among parents. Only after she contacted COSAC in frustration did Grossman learn her son was entitled to a social worker's assessment to determine what programs would be a good fit. He was also eligible for transportation to and from work and state money for a home health aide to help him get ready in the morning.

"There's a gap," Grossman says. "It's a type of discrimination. If my kid can't avail himself of what's out there, you're discriminating against him."

With COSAC's help, Grossman found a workshop for her son at the Daughters of Miriam Center, a nursing home in Clifton. This month, he started assembling folders for doctors' offices.

Grossman noticed an immediate change in her son.

"The difference just the first day -- he came back a totally different person," she says. "He said to me, 'I did it. I went.' There was a sense of accomplishment."

One day, she hopes to find an even better job for her son.

New state efforts

There are many cases like Daniel Grossman's throughout the state -- capable but idle graduates of solid special-education programs who create a needless strain on their families, says Linda Walder Fiddle, whose Ridgewood-based Daniel Jordan Fiddle Foundation funds programs for autistic adults.

"Look at it from a financial viewpoint," Fiddle says. "It costs a tremendous amount for special education -- and we need to make that investment. If we drop the ball when these people become adults, they won't contribute to society and we're creating a burden. They're capable of contributing, and it's not just the high-functioning individuals. We're talking about individuals who have very little language and not exceptional skills who can go from being tax burdens to taxpayers."

State officials say they're working to make the transition to adulthood less onerous. The Division of Developmental Disabilities started a program called Real Life Choices, which allots families up to $28,000 a year to spend on programs they choose for their adult autistic children. The division also has begun setting up informational meetings for families with children expected to age out of the educational system in coming years, says Carol Grant, acting chief of staff of the Department of Human Services and the former director of the disabilities division.

"It's been a priority of ours since 2002 to ensure the transition is as seamless as we can make it," Grant says. "We need the resources to do that."

Part of the problem is a lack of money. Running an adult day program -- which offers a range of programs, including job training, life-skills instruction (like managing money and cooking) and baby-sitting -- is a money-losing proposition. While school districts spend up to $78,000 a year per special-education student, the state gives adult programs between $13,000 and $28,000 per client a year. COSAC estimates that adult programs need $30,000 to $60,000 a year per client. Most programs get by only with the help of grants and parent fund-raisers.

Typically, if parents are savvy enough to apply -- and have been careful to keep financial assets out of their child's name -- an autistic man or woman begins receiving supplemental Social Security income at age 18. At age 21, a mix of federal Medicaid money and state funds doled out by the Division of Developmental Disabilities is available for programs that replace school. Adults with higher skill levels can get help finding jobs through the state Department of Labor's Division of Vocational Rehabilitation.

Going it alone

More troubling than the lack of money is the difficulty parents have finding appropriate services. Six years ago, when Jim and Jennifer Hoppe began searching for an adult program for their daughter, Jaimie, they were so disheartened they decided to start one of their own.

If anyone could make a go of it, they figured, it was Jim. After all, he was chief financial officer for Citigroup. The Wyckoff father quit his job in 2000, enlisted 11 other families from the Alpine Learning Group, Jaimie's school in Paramus, and organized the Quest Autism Foundation.

The Hoppes signed a sweetheart deal with the Wyckoff YMCA. If they established a pilot project, one that could be duplicated at other YMCAs, Quest could rent 1,700 square feet of space for $1 a year for 40 years.

The result is the Quest Autism Foundation Adult Day Program, which opened in June 2005 with Jaimie and one other participant. This summer, two more young adults joined. All four have jobs sorting mail, setting tables, collecting recyclables and bagging groceries.

"People with autism have the same life span as typical people," Jenn Hoppe says. "You can't wait for someone to provide it for you. Sometimes you have to be a pioneer."

But the expense can be daunting. With just four participants, the Quest program costs $300,000 a year, Jim Hoppe says. They get $100,000 through state grants and tuition. That leaves a $200,000 gap that must be filled by fund raising, like a dinner dance scheduled for October.

"It's a lot easier to raise money for a cute child than it is for an adult," Jim Hoppe acknowledges.

"We compete against the Cancer Society and other charities like that," he says. "When people hear we help four families, we're not on the radar screen."

Nowhere to live

Finding a place for autistic adults to live is even more difficult.

Jeffrey Douma's parents want him to live on his own like the adult he is. They also want the peace of mind that will come with his future being settled.

"More terrifying than what happens after graduation is what happens to him when we're gone," says Cathy Douma, his mother.

Jeffrey works part-time cleaning offices in Morristown as part of a program called The Daily Plan It. He's a handsome man who plays the piano, but whose verbal skills are childlike. He'll ask his parents or his 19-year-old sister, Erica, bizarre questions over and over, such as "Air Bud or Air Buddy?" -- referring to the children's movies. When he's bothered by noise, he plugs his ears with his thumbs. Sometimes, he hits his mother.

Every once in a while, he approaches a stranger in, say, the supermarket, and touches her. He's gentle, his mother says, but still. She has to explain it to the startled stranger.

Cathy Douma wants to find her son a place where he is safe and happy.

The good news: Because she just turned 55 and her husband is 59, their son qualifies for the priority waiting list for a group home because he has older parents.

The bad news: 7,912 others are ahead of him. It could be eight years before he moves out. That means she and her husband could be 63 and 67 before they are relieved of the day-to-day stress of caring for an autistic son -- a job they've already held day and night since he was born 22 years ago.

"It's sort of like, I did my job," the Morris Township mother says. "We're ready to go to the next phase. You feel like you put in your time, but you can't stop. You have this responsibility."

The housing crisis is only going to get worse. Beginning in 2010, the swelling number of children diagnosed with autism will begin aging out of school. So far, the state hasn't allocated any money to pay for more group homes or supervised apartments.

For Robin Sims, the best option for her 23-year-old daughter is the Hunterdon Developmental Center, a place often dismissed as an "institution."

New Jersey has seven developmental centers -- large residential and vocational facilities for people with all kinds of developmental disabilities. Together, they house about 3,000 people, most of whom have nowhere else to go. Just about everyone in the disabled community lobbies for them to be shut down. Even the U.S. Supreme Court, in its 1999 Olmstead ruling, called for moving people into "community settings" and out of places like Hunterdon.

Sims, however, says Hunterdon saved her family.

"I got lucky," she says.

Heather was a frustrated, stubborn teenager. For some reason -- Sims isn't sure why, because her daughter can't speak -- Heather didn't like her school. In April 1997, when she was 14, Heather took it out on her family. She broke every window of their home in Bloomfield and pounded holes in the walls. Sims has a video showing the bloody cuts those tantrums left on her daughter's wrists.

"One day we couldn't take it anymore and we called 911," Sims says.

Hunterdon is currently admitting new residents on an emergency basis only. Most emergency admissions, like Heather's, are court-ordered.

The center, set on rolling hills in Clinton, has been Heather Sims' home for nine years. It is where she and 600 disabled people live, work and play. She has a tightly structured schedule. She holds a paying job on site packaging Sleep-Snugs -- plastic clips that hold bed sheets in place -- that are sold at Bed, Bath & Beyond. She swims in the indoor pool, bicycles, Rollerblades, takes trips to the beach and, Sims says, has a young man interested in her, though she's done nothing to encourage him.

Sims says her daughter respects the Hunterdon staff and doesn't let her frustration bubble over into violence nearly as often as she did at home.

"The environment is predictable and dependable, so she does well," Sims says. "She's been happy and healthy and functioning. She knows she won't always get her way. With me, she'd destroy herself. It's amazing that she's happy."

Sims is well aware of the stigma attached to what she calls state institutions. A caseworker once accused her of trying to get rid of her daughter. But when Sims could no longer control her and she became a danger to herself and others, what alternative was there?

"Every parent wants to quit the [I-have-an-autistic-child] club, and you get to a certain point and you realize you're not quitting the club," she says. "So you realize there's a point where your desires end and hers begin. It's not what I want for her, it's what she wants for herself."