Thursday, June 08, 2006

WORRIES IN DELAWARE (AND ELSEWHERE)

An article in the Delaware Coast Press highlights a growing concern about providing services for adult autistics. It seems that not all autistics grow up to the rosiest of lives.

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.

12 Comments:

Blogger Kristina Chew said...

Though this post and the previous one on chelation may seem far apart in topic, they are not necessarily so------both raise and ask the questions of, what do we [parents] need to do today and now and right now to ensure the best for our lovely children???????

6/9/06, 12:52 AM  
Blogger Do'C said...

"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.

Wade, you are aware that the population of the U.S. has gone from approximately 200 million in 1970, to nearly 300 million today, right?

Even without claim of epidemic, the population increase alone can answer your question of why there was less of a need for services for autistic adults in the past - there were fewer adults with autism.

In reading your November piece, I agree, it really comes down to dollars. I think it's extremely important for all parents with autism in the family to really understand Wright's Law/F.A.P.E. rights, I.D.E.A. details, etc. Advocate for education initiatives and don't let research dollars get flushed.

6/9/06, 1:21 AM  
Blogger Ian Parker said...

This comment has been removed by a blog administrator.

6/9/06, 7:22 PM  
Blogger Ian Parker said...

(yes, I'm the guy doing the deletes above - not a good night for wordsmithing)

DoC wrote:

”Wade, you are aware that the population of the U.S. has gone from approximately 200 million in 1970, to nearly 300 million today, right?

Even without claim of epidemic, the population increase alone can answer your question of why there was less of a need for services for autistic adults in the past - there were fewer adults with autism.”

Okay, so the U.S. population increased by 50% over the past 36 years, with the implication that so did the population of those with ASD. So in 1970 we had this covered and the budget allocation didn’t keep up with the population trends? What year did we fall behind? 1980? 1990? 2000?

I’d suggest that the reason for the increase in need has two other explanations: a) Wade’s implication that there may be more demand than explained by population growth, i.e. an increase in the percentage of the population with ASD (or at minimum an increase in severity), and/or b) changes in expectations regarding the quality of care to be provided for autistic adults.

We can argue here whether the prevalence or severity of presentation of ASDs have increased, but regardless of whether they have (I’d suggest yes, but not to the tune of 6000%, and no one has good numerical evidence prior to the early 1990s based on today’s diagnostic criteria to conclusively argue the point one way or the other) the issue still remains that society somehow still has to find a way to either a) reduce the need for ASD adult support services through improvement of ‘outcomes’ (better access to education, training, research, treatment, etc.), while b) providing support services to those in need, or c) adjust expectations downward.

One would hope that we could all agree that “c” is not the option we’re looking for. But without a greater societal commitment to a) and b), that’s where we’re heading. And while I haven't heard anyone mention it yet in relation to ASD (although maybe someone has), just wait 'til the boomers start retiring and further ratchet up the pressure on support services.

6/9/06, 7:34 PM  
Blogger Do'C said...

Good points Ian.

"I’d suggest that the reason for the increase in need has two other explanations..."

Maybe a third contributor too. Perhaps better recoginition/understanding is helping more persons with an autism diagnosis who might have previously ended up homeless or otherwise gone unrecognized and without appropriate services/assitance.

"Approximately 20-25% of the single adult homeless population suffers from some form of severe and persistent mental illness (Koegel, Paul, The Causes of Homelessness, Homelessness in America, 1996, Oryx Press.)"

No desire to discuss "mental illness" other than to point out that this could simply mean diagnosed with something by the DSM criteria.

6/10/06, 12:59 AM  
Blogger Ian Parker said...

I agree that DoC's third contributor could also be driving increased demand.

Not to be a downer on what here is a nice sunny Saturday morning, but this issue (provision of services to both children and adult autistics) is one for which I do not have a lot of optimism.

I live in Ontario, a relatively wealthy province in a wealthy country during a period of relatively good economic results, and our levels of government are not willing to fund services to the levels that are required. What will the willingness be during an economic downturn when the proportion of seniors in society increases, putting increased pressure on the demand for services and medical care?

This is one of the reasons why the poor levels of funding for programs for children is so short-sighted. Increasing the level of capabilities of ASD children would surely have a positive impact on the level of future services required for ASD adults (above and beyond the personal benefits for our children), but current administrations are pushing these costs onto the next generation of taxpayers in the form of increased adult services. We can argue the merits of ABA/IBI (and I’m sure most parents would be willing to consider other alternatives, if and when they become available to those without deep pockets), but the lack of funding also includes supports such as OT and speech and language therapy, which I believe pretty much everyone agrees with.

While the cost/benefit of service provision for children today vs. tomorrow can be debated (sarcasm - nice to know that the calcs do not take into account those messy and irrelevant intangibles such as the educational and social well-being of those children who receive the support), support today would presumably reduce future demand. And for those governments that are trying to make the argument that funding today has a negative economic return, I don’t see them setting aside the funding (from the money they’re saving) to finance these ‘lower’ cost future responsibilities. Instead, they’re trying to offload current obligations onto future taxpayers, who may be less able due to demographics to foot the bill.

6/10/06, 10:35 AM  
Blogger Joseph said...

Population growth questions aside, asking why there's more demand for adult autistic services is not the right question. The right question is whether there's more demand for mental handicap and learning disability services in general for the adult population. Is there any evidence of this? I'm pretty sure there isn't.

(I could check how much the total institutionalized population served by CDDS has increased since 1992 if you want).

6/10/06, 5:35 PM  
Blogger Joseph said...

Heck, I went ahead and checked. The following numbers are obtained by adding the categories Res - CCF, Res - ICF, Res - DC and Res - SNF:

Q2 1992: 32,943 institutionalized
Q4 2005: 36,847 institutionalized

Growth is a factor of 1.12, which is lower than would be expected from population growth. Conclusion: Calfornia is speding less, proportionally, in providing care for instituionlized individuals in 2005 than it did in 1992.

6/10/06, 5:46 PM  
Blogger Joseph said...

Another important point is that I bet many fellow autistics are glad that Asperger's syndrome was invented as a diagnosis. Twenty years ago they might not have gotten services for being "weird".

6/10/06, 6:08 PM  
Blogger Ian Parker said...

Joseph wrote:

”Population growth questions aside, asking why there's more demand for adult autistic services is not the right question. The right question is whether there's more demand for mental handicap and learning disability services in general for the adult population. Is there any evidence of this? I'm pretty sure there isn't.”

Why is asking if there’s more demand for adult autistic services not the right question? I’m assuming that you’ll raise the point of diagnostic substitution, but I’m not sure that expectations will necessarily be the same for those with MR diagnoses vs. ASD diagnoses.

A further question is whether it is reasonable to expect demand to grow at a rate greater than the population increase in the future. Regardless of whether the ‘epidemic’ exists or is a result of an increase in diagnoses within a stable prevalence, the fact remains that the number of people diagnoses with ASD is increasing. I would suggest that it is a perfectly reasonable assumption that those with the diagnosis and their families will be more requesting of adult care than previous generations due to changing expectations, if nothing else. Assuming that the diagnostic surge began in 1992, we have four more years before the first wave turns 18.

Joseph wrote: ”I could check how much the total institutionalized population served by CDDS has increased since 1992 if you want).”

Why is the institutionalized population considered a valid measure of the requirement for adult ASD services? I can’t speak to U.S. practices, but in Canada there has been a move to close institutions and move people into the community. Whether community care has kept up or will do so in the future is a different question.

Joseph wrote:

"Another important point is that I bet many fellow autistics are glad that Asperger's syndrome was invented as a diagnosis. Twenty years ago they might not have gotten services for being "weird"."

Would this be an increase in demand? ;-)

6/11/06, 2:35 AM  
Blogger Joseph said...

Why is the institutionalized population considered a valid measure of the requirement for adult ASD services?

It's the closest data available. It shows that the total "burden" has not changed, and is probably even lower now, even if the labeling of individuals served has shifted.

6/11/06, 7:21 PM  
Blogger Ian Parker said...

Joseph wrote:

"It's the closest data available. It shows that the total "burden" has not changed, and is probably even lower now, even if the labeling of individuals served has shifted."

But if there has been a deliberate shift away from institutionalization towards community care then how would this number, representing a 'service' that is being reduced, be reflective of the total demand for ASD services? All it would reflect is the movement away from institutionalization.

6/11/06, 10:00 PM  

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