(Blogger’s Note: I wrote this before the shootings in Newton. As will be seen below, there is some discussion about Asperger’s syndrome. At this posting there was some information that the shooter in Newton may have had Asperger’s. That does not have any bearing on this post. Many will argue, some have already, that, if true, the condition would have no bearing on the awful events of this week. If indeed the shooter in Newton had Asperger’s, we will join that discussion and, as always here in this space, welcome and encourage your comments. These kinds of horrific tragedies focus our collective attention on trying to make sense of the senseless and on trying to prevent them from happening. As that attention is sharpened with accurate information we in the advocacy community must join the conversations with our unique perspectives about what it means, and more importantly as may be true in this case, what it does not mean, to have a developmental disability.)

Better Services; Not Always More

Two things popped up in the news recently that on the surface don’t seem to be related but are, at least in certain ways.

They are the changes in the American Psychiatric Association’s revised diagnostic manual (DSM) and the practice, as discussed in a New York Times Op Ed piece, of taking struggling students out of literacy classes so they will be labeled as having a cognitive disability for the purposes of qualifying for SSI benefits.

The new DSM, which has finally been signed off on by the APA’s board and will be published next spring, has been through a lengthy, often contentious process of revision. The APA committee that worked on it decided to open up the process to public review and comments early on. As a result, interest group weighed in heavily throughout, in some cases effecting changes, so that the end result was less sweeping than was originally intended. Whether that produced a better or lesser document will no doubt be debated for some time. Not my goal to weigh in there for now.

Although there were many sides to the opinions and comments during the drafting process, the one major area I want to talk about a bit here is the objections raised because the proposed change would affect who would receive benefits and services and to what degree. A perfectly legitimate concern, especially given the manual’s position as the diagnostic Bible for the health and social services fields.

It raises questions though. Questions I believe the DSM revisions committee were trying to address in part when they originally set the more sweeping goals for this update.

What should we base our decisions on when we look to provide help to those who need it? One controversy in the manual’s revision was centered around leaving certain conditions previously grouped under Autism Spectrum Disorders, most notably Asperger’s syndrome, out of that category.

Some with Asperger’s may indeed benefit from some targeted training and assistance to help them deal with the often unforgiving complexities of the world around them. The same case could be made for some people with learning challenges, behavior issues, vision problems, blood chemistry imbalances, asthma and other traits that could put them at disadvantages with some of their peers.

We’ve gotten so locked in to our service-provision labels that we’re losing sight of the fact that one person with Asperger’s syndrome may not need, or want, to have that label define them for life. Another may desperately need some help. The way we now parse out that help is by lavishing it on “the deserving,” those with conditions we’ve all agreed warrant that largesse, and withholding it from those not so deserving because they are not so designated.

Certainly structures and guidelines are necessary, especially in health care. In the growing field of support services, though, it is clear, and has long been advocated, that people who need supports need those supports regardless of what the underlying reason is. We need to separate the provision of some of the more generic support services from the label-laden health care industry.

The DSM is a vital tool for doctors and other health care professionals to develop standardized treatments and medications. I think it has become too powerful a determiner of public supports and services.

A related situation finds poor parents in Kentucky taking their children out of literacy classes so they will continue to qualify for SSI benefits by continuing to be labeled as having a cognitive disability, as described in Nicolas Kristoff’s piece in the Sunday NY Times. http://kristof.blogs.nytimes.com/2012/12/07/when-parents-have-an-incentive-for-their-kids-to-fail/

As we all know, SSI benefits are targeted to people with significant disabilities. Or should be. In the Kentucky cases cited here, and I’m sure many others with different details, it seems clear that the “deserving” recipients are offering a haven for the “undeserving.”

It is understandable that individuals and their families, desperate to survive in desperate circumstances—whether it’s the mother with a five-year-old that seems withdrawn and extremely diffident; or the family of six struggling to subsist in poverty—would turn to whatever resources they could find to help.

For now that help is a patchwork of federal, state and local programs. Many of those are underfunded. Others have more solid funding. When there is not enough you don’t ask “does it meet the intent” you say “we need help now.”

However, in the absence of a public commitment to help the “undeserving,” as well as the “deserving” we’ll have these scrambles to get into the group that gets the positive attention.

It’s a public discussion no one wants to have. Those who have the bigger pieces of the dwindling pie don’t want to rock the boat. Who can blame them? Those on the outs are because their stories are more complex or not so compelling.

We could use situations like the messy DSM process and subsequent or the desperate “nose-to –spite-their-face” actions of Kentucky parents to spark discussions about how to better target public services and funding, trimming in some areas, expanding in others, so recipients get what they need and taxpayers get what they pay for.

But we probably won’t.

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Disability in Focus