WORRIES IN DELAWARE (AND ELSEWHERE)
The mother of a 24 year-old autistic man, who is currently living at home, echoed the same worry so many of us have, “I’m not going to live always.”
Another parent spent a considerable time searching for an appropriate group home for his two autistic sons, but found the living conditions in available facilities to be deplorable. He wound up renting an apartment for his sons within walking distance of their jobs at a local supermarket.
The lack of appropriate services for children and adults alike is all part of what many call the Epidemic of Denial. Officials at the federal, state, and local levels are doing their best to avoid facing the fact that they have a real problem on their hands. And it’s only going to get worse. Here’s the part of the story that really caught my attention:
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.”
It should be noted that another official attributed the rise in the population of autistic adults to a variety of factors:
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.
I was unaware that Delaware has become a haven for retirees, although I would certainly agree that the DelMarVa area is an inviting destination. Nevertheless, an influx of families from elsewhere cannot completely explain the increased burden on services. Indeed, Mr. Lafontaine mentioned the factor of autistic individuals already in the area aging.
It all begs the question of why there was less of a need for services for autistic adults in the past. It’s a question that many in other states are also asking.
In any event, parents in Delaware are starting to worry about housing, transportation, and personal services for their autistic sons and daughters. To the state’s credit, Delaware has been tracking numbers through its Department of Education, and is at least thinking about the future. But there’s no plan, and good intentions are not going to help families in need now.
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.”
We have all heard some pretty scary estimates of the lifetime cost for caring for an autistic individual. Undoubtedly, some individuals will require less in the way of services, and some will require more. The unfortunate truth, however, is that not all autistic children grow up with the ability to live a fully independent life.
For some families, physical recovery from autism is possible. For other families, though, that may not be an option. And some families do not even consider recovery or cure an option. The common thread for all families of autistic persons is that we face a heavy financial burden. When families are unable to bear that burden, our governments step in. It is time for society as a whole to take stock of this situation and decide just what is to be done. As the numbers increase, time is running out.
Thanks to Teresa for pointing out this news item.