When parents are gone, arrangements for the autisic can be a challenge
By Rick Wills
PITTSBURGH TRIBUNE-REVIEW
Sunday, October 2, 2011
The thought of what will happen to her autistic son when she's gone causes Marie Mambuca great anxiety.
Doctors diagnosed Tony Mambuca-Capanzzi, 20, with autism at age 3 and he still lives at home.
"He does not understand money. He would eat everything all at once. He'd walk into the street without looking. And who even knows what other people would do to him?" said Mambuca, 48, of West View.
She is hardly alone in her worry. As children, many autistic people attend school and live with their parents. But in adulthood, their educational opportunities dry up, their parents become infirm and die, and finding safe and stable living arrangements becomes a challenge.
Autism, which affects an estimated 1.5 million Americans, is increasing at a rate of 10 percent to 17 percent each year, according the Bethesda, Md.-based Autism Society. By 2023, about 380,000 autistic children nationwide are expected to need extensive residential services as adults, according to the Department of Health and Human Services.
"There is no other disability with this rate of increase that autism has, either nationally or in Pennsylvania," said Ann Bale, a spokeswoman for the Pennsylvania Department of Public Welfare that includes the Bureau of Autism Services.
About 25,000 people in Pennsylvania are living with autism diagnoses, 3,825 of them adults, state records show. By 2015, the number of autistic adults is expected to increase to 10,140, according to an audit by the University of Pennsylvania for the state Bureau of Autism Services.
Allegheny County has the highest number of autistic residents with 2,235 people, the records show. By comparison, 658 people with autism live in Westmoreland County, 317 in Butler County and 208 in Washington County.
"There has been a large increase of autism diagnoses in recent years, and researchers cannot figure out why," Bale said. "We hope we can meet the demand for the need for more services and for more housing."
Known as a pervasive developmental disorder, autism involves deficits in a person's ability to communicate and interact with others. The range of autism is vast -- some people can live independently, and others cannot speak or care for themselves.
The Centers for Disease Control and Prevention estimates 1 in 110 children in the United States has an autism spectrum disorder. The agency classifies such disorders as "an urgent public health concern," and is working on one of the largest U.S. studies to date, called Study to Explore Early Development, to determine risk factors such as genetics or environment.
Organizations that represent autistic people fear an onslaught of social problems in coming years.
"We think the next wave of homelessness will probably be adults with autism. There's also likely to be a high incidence of autistic people in jail. There are not a lot of support services after the age of 21, and what becomes available is complex and difficult. Not everyone has siblings, and not all siblings want to care for people with autism," said Scott Badesch, president of the Autism Society, which has 159 chapters across the country.
Said Nina Wall-Cote, director of the Bureau of Autism Services: "The public system right now cannot sustain all that is needed. We will be crisis-managing" without more resources.
The state's Adult Autism Waiver, a program designed to help house adults with autism, can accommodate only 200 people.
"Two hundred adult autism waivers for the whole state just does not cut it, even now. ... The unfortunate reality of residential programs is that someone has to die for someone else to get in," said Kim Lieb, director of The School at McGuire, part of McGuire Memorial, a New Brighton nonprofit that operates schools and work programs and houses 80 people with disabilities in 21 Beaver County group homes.
Lieb said McGuire Memorial anticipates increased demand for its adult residential services.
"Other disabilities like muscular dystrophy, cerebral palsy and Down syndrome are not increasing. Autism is increasing quickly, and it's a little scary," she said.
There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function, according to the Autism Society. Researchers are investigating theories, including heredity, genetics, medical problems and environmental factors.
Some people believe the use of childhood vaccines explains the higher prevalence in recent years. But studies examining trends in vaccine use and autism do not support such an association, according to the Centers for Disease Control and Prevention.
Most adults with autism cannot live on their own, said Lu Randall, executive director of Aboard AUTISM, a Western Pennsylvania service and advocacy group. Last year, Randall assisted a 62-year-old autistic woman whose mother died. The woman lived at home with no utilities and collected rainwater to use for cleaning and washing dishes.
"There are many, many more people out there like her. And with some of them, we won't find out until it's really too late," Randall said.
Peggy Best, 55, of Greensburg worries about her son Sean, 23, who is largely nonverbal.
"No one's going to take care of him like I do," said Best. "I get up every morning and help him get shaved. I cut his fingernails. I am hoping that one of my other kids will take in Sean when I can't care for him."
James Eaves, 19, diagnosed with autism at age 2, attends Highlands High School, where he sings in the choir.
"His well-being has always been my biggest worry. I have been thinking about that since he was 10. He will probably eventually be living in a group home, but I don't like to think of that," said his mother, Fredericka Stover, 54, of Natrona Heights, a nurse at the VA in Oakland, who twice underwent cancer treatment.
By 2023, the cost of providing residential services to autistic adults will be about $27 billion annually in current, noninflation-adjusted dollars -- more than a third of the Health and Human Services budget, according to federal statistics.
The Autism Society puts the bill even higher when other needs are considered -- nearly $90 billion annually for services to autistic adults and children, including research, insurance costs, Medicaid waivers, educational spending, housing, transportation, employment, therapeutic services and caregiver costs.
In Pennsylvania, state officials "have documented the scope of the problem and what it is expected to cost," Wall-Cote said. But the practical reality is how to pay for it.
Pennsylvania legislators this year instituted severe cuts, largely to welfare services and education, to offset a projected $4 billion budget shortfall. Things are worse at the federal level -- a congressional committee has a Thanksgiving deadline to identify $1.2 trillion in savings over 10 years. If it cannot, across-the-board cuts automatically would take effect in January 2013.
A measure co-authored this year by Rep Mike Doyle, D-Forest Hills, would provide services to individuals with autism and their families. The bill would cost $693 million during five years; it would direct at least $500 million to autistic adults. Doyle believes the bill has little chance of passing because of the budget climate.
"But facing this problem can't wait much longer, or it will cost even more," he said.
When educational and social services drop off or end for autistic people at age 21, many autistic adults simply stay home. Aboard AUTISM's Randall said she routinely fields calls from panicked, aging parents.
Even parents whose children are institutionalized worry.
"One day, I am going to die. One big fear I have is, who is going to give a damn about him?" Dan Torisky, 79, said about his son, Edward, 54, who lives in a group home in Coraopolis. The elder Torisky founded the Autism Society of Pittsburgh in 1965 and is its president.
Torisky said adults with autism need to be trained to work. Edward Torisky works in the laundry at Allegheny Valley School, and Tony Mambuca-Capanzzi works at Easter Seals in the South Side. "What has to be done is training beyond high school, to get them to hold a job, some sort of job, and make them high-functioning," Torisky said.
Rick Wills can be reached at rwills@tribweb.com or 412-320-7944.
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