Congress is moving forward with efforts to renew key autism legislation, but some advocates aren’t happy charging that a proposal this week does nothing more than maintain the status quo.
After months of talk, a bipartisan group introduced legislation Thursday to reauthorize the Combating Autism Act for another three years. The law, which dates back to 2006, allocates millions of federal dollars for autism research, training and infrastructure. Unless Congress acts, the law is set to expire at the end of September and all of the programs established and funded under it will cease at that time.
As recently as December, autism advocates hoped that reauthorization of the bill would mean expanding it. Legislation proposed at that time even called for creating a new wing within the National Institutes of Health specifically focused on autism, among other changes.
Instead, the bill introduced this week is a near replica of the one approved five years ago. The reason: congressional aides say that it’s unlikely a modified bill could make it through Congress, especially ahead of the September deadline.
Mindful of the political climate, advocacy organizations including Autism Speaks and the Autism Society are backing the bill, acknowledging that maintaining the current level of support is probably the best that can be expected.
“It’s realistic,” says Alison Tepper-Singer, president of the Autism Science Foundation, which is also supporting the legislation. “There are a lot of things this community needs but this is a step forward in that it doesn’t allow the programs we’ve already made to lapse.”
But not everyone is on board. The Autistic Self Advocacy Network is strongly opposing the legislation, arguing that the current bill focuses too little on services for individuals with autism and pays almost no attention to adults with the developmental disorder.
“It tells adults and all those families waiting for services that they’re just going to have to wait for three long years,” says Ari Ne’eman, president of the self-advocate group.
It’s not immediately clear when Congress will take up the legislation, but advocates say they expect lawmakers to act quickly.
Yes, adults (like me) really need more support, especially as we get more elderly. But don’t let’s sink the whole thing if we cannot get it this time around. All these kids are getting older and as time goes on the clamor for more adult support is only going to get louder.
I disagree. It isn’t enough to just say that we’re going to settle for what we can get. Also, if the bill doesn’t actually involve people with autism, isn’t that a big problem? I think they should make changes or not extend it at all.
When you read the proposed legislation it is more about funding people who provide technical assistance or do research in the area of ASD. I have to admit I am concerned as well that there is limited, if any funding that is being proposed to go directly to the individuals.
I agree that one has to be mindful of the political climate. If we’re afraid of losing services for adults with disabilities, energy that’s currently going into complaining about what this bill doesn’t have might be better spent advocating against the proposal to convert Medicaid to a block grant. Compared to all the politicians who are now lining up to state that they’re going to fight cuts to Medicare, there’s a disturbing silence when it comes to fighting cuts to Medicaid. Flaws aside, Medicaid is currently the way lots of people with dd get services.
What mainly irks me about the CCA is that, as far as I can tell, no actual autistics were able to provide input into it’s creation. And that makes the “nothing about us without us” slogan spring to my mind.
Anyway, rather than going over all the pros and cons of the CAA again -as I expect everyone who’s reading this comment understands them already- I just want to mention that I’ve started a petition on change (dot) org about it. My position is that autistics need to be included in the process of improving, or replacing, the CAA.
Not sure if this website allows URLs to be posted in comments.
If that URL above doesn’t show up then just head over to change (dot) org, and search for the petition named “Tell Congress NO to More of the Same on Autism Policy”.