Connecticut program that assists adults with autism threatened with budget cuts

From the New Haven, Conn., Register:

Paul Horan lives in an apartment in Madison and bags groceries at Stop & Shop, something that seemed unlikely a few years ago.

Several times a week, Horan goes out with a mentor from the state’s Autism Spectrum Disorder pilot program and enjoys movies, concerts, museums and hiking.
He also works with a life skills trainer, who teaches him how to cook, clean and take care of himself.

Horan is 28 and has Asperger’s syndrome, which is characterized by a severe lack of social skills and difficulty with social relationships, but adequate language skills and normal-to-above normal intelligence. His mother, Eileen Horan of Guilford, describes Paul as a caring and intelligent person.

But after Paul left school at age 24, he spent most of his time sitting at home by himself, getting bored and depressed, Eileen said.

She credits the pilot program, which is run through the state Department of Developmental Services and serves 52 people with autism and Asperger’s syndrome in Greater New Haven and Hartford, with changing Paul’s life and her own.

"It has been such a blessing, I can’t even tell you,” Eileen said. “Our relationship has gotten much better because we don’t see so much of each other. It’s made him more independent; he feels better about himself because he’s doing things. It has taken a lot of pressure off of me.”

Last year, Eileen was able to take a two-week trip to Ireland to visit family, and an employee with the program came in every day to check on Paul.

Program coordinator Kathryn Reddington said participants learn life skills, like how to budget their money or do laundry, and social skills. Mentors bring the participants — many who had been isolated in their homes — out into the community to do activities. Participants may also receive job coaching to help them find employment.

Reddington said participants are getting jobs and becoming more involved in the community.

But Eileen Horan and other parents with participating children worry about the program’s future. Late last month, Gov. M. Jodi Rell ordered all state government agencies to submit proposals that cut up to 10 percent from their upcoming budgets.

“We’d be totally devastated if anything happened to (the program),” Eileen Horan said.

The pilot program launched in June 2006 with $1 million in funds and received an additional $500,000 in July 2008. It’s now financed through June 2009. Officials at DDS are exploring the possibility of seeking a Medicaid waiver, under which the federal government would reimburse the state for half its spending on services for adults on the autism spectrum.

“Any expansion of the program will be contingent upon additional state resources,” said Joan Barnish, DDS director of communications.

Before the pilot program’s inception, the state provided no services to adults with autism who are not dually diagnosed as mentally disabled.

The only exception was the Bureau of Rehabilitation Services, which offered employment assistance to adults with autism. But BRS employees are primarily
trained to work with clients with mental disabilities and mental health issues,
and haven’t been successful at providing job coaching to those with autism, said Lois Rosenwald, executive director of Wallingford-based Autism Spectrum Resource
Center.

Families like the Horans find that services for young people on the autism spectrum dwindle as their children get older.

After her son became too old for the public school system, Eileen Horan paid for him to attend a private vocational school for two years, but the cost became unbearable and Paul had to leave. He spent his days alone in his apartment, unable to find a job. He had no friends and nothing to do.

“When he would get bored, he’d get depressed. And then he’d get meltdowns — just thinking all bad things,” Eileen said.

She said it’s common for individuals with Asperger’s syndrome or autism to have “meltdowns,” where they have suicidal thoughts or urges to hurt themselves.

As the sole provider for Paul, Eileen wasn’t able to get away, even for a weekend visit to her daughter’s home out of state.

“My whole time was just spent helping Paul shop and cook. It was just really, really rough going,” she said.According Rosenwald, nine out of 10 adults on the autism spectrum are unemployed or underemployed. Most live with their families, “if they’re fortunate enough to have families that will keep them.”

When parents get too old to care for them or die, they often end up in institutions or on the streets.

Living on the streets, autistic adults, whom Rosenwald characterized as “very gullible and very much the victim,” are often sexually abused.

“We hear one horrendous story after another,” Rosenwald said.

When living at home, autistic adults often spend their days home alone watching television and getting “seriously depressed.” This year, three young adults who belonged to the Autism Spectrum Resource Center committed suicide.

The number of autistic adults requiring services from the state is unclear, as no demographic study has been done and there are likely many who go undiagnosed, Reddington said. There are about 250 individuals on the autism spectrum aged 18 to 21 in the state’s public schools. They are entitled to a free, appropriate public education until age 21, according to Jacqueline Kelleher, education consultant to the state Bureau of Special Education.

As they grow out of the public school system, it’s estimated that 80 percent or more of these people will continue to need support and services throughout their lives, said Suzanne Letso, co-founder and CEO of the Connecticut Center for Child Development, a Milford-based nonprofit organization dedicated to improving the lives of people with autism and Asperger’s syndrome.

The number of children being diagnosed with autism has skyrocketed in the last two decades. According to the Centers for Disease Control, for decades autism was believed to occur in four to five per 10,000 children. In 2004, the CDC and the American Academy of Pediatrics reviewed data from several studies that found the prevalence rates to be about six per 1,000.

Letso noted with alarm that as this generation of children with much higher rates of autism becomes too old for public school systems, the state will be unable to meet the demand for services.

Rosenwald said that in general, “It’s the folks that are the middle- to high-end cognitively that are not receiving, that don’t qualify for any services and really are in desperate need for services. Those that are more classically autistic are receiving help because they are generally dual diagnosed” with mental disabilities or other disabilities.A 2003 study by the CDC found that 62 percent of children on the spectrum had at least one additional disability. Of those, 68 percent had a mental disability or an intellectual impairment.

Rosenwald said, “There’s been a huge commitment (by the state) to those with mental retardation in Connecticut that has overshadowed the fact that there are other people desperate, truly desperate, for services.”

Rosenwald said it’s only been in the last 10 years or so that parents of autistic children and professionals who work with them have begun to step up and advocate for services.And with the number of adults on the spectrum still unknown, Rosenwald believes the state has been concerned that, “if you begin to service folks in any meaningful way, they’re opening the floodgates.”

Rosenwald said there are very few states that provide services for adults with autism across the spectrum. Connecticut’s pilot program “really is on the cutting edge,” she said.

“I can’t imagine they’d take the only program that exists for people with autism and cut that,” Rosenwald said. “I think this is our decade. I think we’re going to see a lot happening around autism now.”