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Adults with autism

Posted: Thu Jun 08, 2006 7:54 pm
by Winnie
Just thought I would point out that they exist -- I recall that being questioned previously on the forum:

From the Lenny Letter:

Adults With Autism Find Services Lacking

By Hilary Corrigan
http://www.delmarvanow.com/deweybeach/s ... 92831.html

Inadequate housing, public transportation and solid employment options have grown into common complaints through the southern Delaware region.
For those with autism, though, the options narrow much further.
Millsboro resident Theodis Bowe searched for a group home for his two autistic adult sons, he told other parents at a May 23 meeting in Georgetown. He found crowded places with little privacy, members suffering from drug and alcohol addictions, time limits on kitchen and bathroom use.
"I don't think they should be forced to live in a place that you wouldn't want to live in yourself," Bowe said.
So he rented an apartment for them. Tony and Michael can walk to their jobs and the grocery store. Bowe visits and checks in by cell phone.
"They had to live independently," he said, encouraging other parents to prepare for their autistic sons' and daughters' futures.
The Lower Delaware Autism Foundation hosted the gathering, part of an effort by the Lewes nonprofit to target the needs of area adults with autism, a neurological disorder that impedes development of social and communication skills.
While the Sussex Consortium educates autistic students until they turn 21, the area lacks continuing programs, such as activities, as well as needed services, including housing, parents complained.
Some autistic adults, such as 24-year-old Antuan James, live at home with family. The arrangement works now, said his mother.
"I'm not going to live always," Pam James-White added.
The Bridgeville resident showed up at the meeting to hear options. She would like to see Antuan live in a home with a small group of residents, supervised by trained staff.
Rehoboth Beach resident Terry Barnheimer wants the same for her 22-year-old son, David. She figures that transitioning him into such a setting would also help him avoid a sudden switch when she dies. A comfortable home, Barnheimer pictures, run by caring workers.
"Where you know that they're safe," she said. "That would be like glory."
The population of adults with disabilities across Delaware has been growing, as those living here age and as retirees relocate to the region from other states and bring disabled children with them, according to Roy Lafontaine, deputy director of the Division of Developmental Disabilities Services, part of Delaware Department of Health and Social Services.
The division partners with various private and nonprofit agencies to provide services -- including housing, employment and caregivers -- for those with disabilities.
Warren Ellis, director of the division's adult special populations program that serves 114 people with behavior problems, mostly autistic people, expects the need for services to rise as a larger population of autistic students grows up. But for now, more group homes for autistic people aren't warranted.
"Not that many people over the years have been requesting residential services," Ellis said.
That may change.
"There are clearly more people with autism who are needing services,"
Ellis said, noting a statewide increase. "Most of those people are still in school."
Starting more group homes and home care services requires enough applicants who meet state eligibility requirements and enough money for the state to meet costs, Ellis said.
Division officials have worked with the Delaware Department of Education to project the number of graduates in coming years. Along with advocates, they have presented findings to lawmakers in an attempt to prepare for the future.
"We're well aware of it," Ellis said of expected rises in the state's autistic adults. "We've been tracking this."
Other concerns Housing is not the only need.
Parents complained of a lack of transportation options and a small pool of available caregivers to hire when they need to work or travel.
Laurel resident Dorothy Thompson has been looking for a job for her 42-year-old autistic son, Kenneth, since 2002.
In caring for a friend's autistic daughter, Lewes resident Bonnie Zistl has trouble finding aides to watch 21-year-old Ashley Dinn.
"My biggest dilemma is, I work a full-time job," Zistl said. "You exhaust your friends getting them to babysit. They become not your friends real quick."
A community center or gym would help on weekends and evenings, since Dinn works weekdays. "Things that she would enjoy doing," Zistl said. "I'd be willing to pay for services."
Getting around the rural region presents another hurdle.
While Delaware Transit Corp. provides door-to-door service for $2 per trip, Barnheimer refuses to rely on the state agency.
"Half the time, they don't show up, they're always late," she said.
The federal Americans with Disabilities Act requires public transportation agencies to provide the same transportation services for disabled people as it does for others.
DART's 52 buses for paratransit services completed 900,000 trips through the state last year, according to Darrel Cole, of Delaware Department of Transportation.
"It's a great service," Cole said, noting that the buses arrive within a 30-minute reservation window. "Transportation is there, is available, for anyone with any sort of disability."
Zistl also refuses to rely on the agency, after a driver returned Dinn to her workplace when she acted out with behavior that autistic people have trouble controlling.
While drivers train to help those with disabilities on bus rides, they do not qualify as medical aides, Cole said.
"Our role is to transport folks in a safe manner," he said. "We're not capable of providing special needs."
Continuing care Ellis' division aims to attract more agencies to Delaware to partner in providing services to autistic adults.
With limited resources, the division must prioritize, focusing first on disabled people who most need homes, who are poor, who lack caregivers or have been orphaned. While federal laws mandate education for disabled children, no such provisions ensure specific care for disabled adults.
"Many parents feel that it should be an entitlement," Ellis said of housing and services for autistic men and women. "Unfortunately, it's not."
That became clear to Lower Delaware Autism Foundation organizers at last month's meeting. "It's more bleak than I expected," Dr. Vivian Bush, a foundation board member and psychologist at the Sussex Consortium, said after hearing parents' comments.
For now, foundation leaders will consider expanding the programs and activities that they provide for autistic children to accommodate autistic adults.
But Charlotte Herbert, executive director of the group that formed in 2001, employs two workers, is run by an 18-member board and maintains a more than $400,000 annual budget, plans further steps. She will seek state and federal money, along with grants and private donations, to boost housing projects. "There's things that just need to change," she said.

Posted: Thu Jun 08, 2006 8:20 pm
by Gabesmom
Winnie, that's some scary stuff. It makes me wonder why we are focusing so much of our energy on arguing with each other and not enough time mobilizing to improve services for both autistic children and adults. I wonder how much more the autism community could accomplish if we were united in this common goal. After all, is there a single person here who would not like to know that our children's needs would always be met, even if we couldn't afford it, and even after we were no longer here to provide for them ourselves?