Wednesday, December 12, 2012

Autism Congressional Hearing Transcript: Opening Statement (2)

Right after Rep. Darrell Issa gave his opening statement, the Oversight Committee's ranking member, Rep. Elijah Cummings, gave a second opening statement.

Here's the video:


Thank you for that, Mr. Chairman, and I do thank you for holding today’s hearing. Before I get started I want to take special note, as you have already done, to our friend who is leaving, Mr. Burton. Over my seventeen years on this Committee, this has been an issue that he has constantly put forth and constantly made sure that we tried to address as best we could. Mr. Burton, I want to thank you for your vigilance and I want you to know that although you may be leaving the Congress, as the Chairman just said, we will continue the fight. And I know you will too.

Mr. Chairman, we have learned much about autism spectrum disorders over the past decade. Taxpayer-sponsored research has identified risk factors and evaluated therapies to assist with some symptoms. Physicians and parents now have a better understanding of the developmental signs and the symptoms, allowing for earlier detection, and educators have experience with new methods and approaches for assisting children with autism. 

Congress has also acted to help individuals with autism and their families in significant ways. In 2010 we passed the Affordable Care Act, which contained significant new protections. Insurers may no longer discriminate against people based on pre-existing conditions. Insurers may no longer impose lifetime caps on health care coverage. New plans must include screening for autism without additional costs to the parents. And young people diagnosed with autism spectrum disorders may remain on their parents’ health insurance plans until they are 26 years old. These are real and significant protections that will improve the lives of millions of American families. 

Even with this progress, there is still more to learn and there is still more to do. While autism affects all racial, socioeconomic and ethnic groups, some studies have shown that African-American, Hispanic and Asian children are less likely to receive an early diagnosis. These delayed diagnoses cause minority children to be further behind in development of language and motor skills. We must be vigilant in emphasizing earlier detection for all our children, as an early diagnosis can make a critical difference in the lifelong development of a child.

We must also continue to invest federal research dollars in new and evolving therapies to improve the lives of those with autism spectrum disorders. In my district we house the Kennedy Krieger Institute [link], an internationally recognized institution dedicated to improving the lives of individuals with developmental disorders. These institutions improve the quality of life, education, and continued development of those affected by autism spectrum disorders, and we must continue to support them. 

Today’s hearing is an opportunity to examine what has been done about autism spectrum disorders to date and what more needs to be done in the future. There are many experts, individuals and groups who can help us in this effort. I want to take this moment to thank all of you for being here. 

As the Chairman said, there are so many people who are interested in this issue, so many who wanted to speak, but I want to say to you what I said to Bob Wright of Autism Speaks a little earlier in the day: I thank you for caring about somebody other than your children and yourselves, because what you are doing here today is raising this issue so that other children, other than those, or other folks, other than those maybe in your own families, maybe your friends, will benefit in the future. 

In other words, you are touching the future, and you are making it possible for those who are going through the autism spectrum disorders to have a better future. And so I thank you all for what you are doing, and as I said to Bob Wright, you must stay the course. One of the things that I’ve learned from being in Congress these seventeen years is that, in order for these causes to move forward, you have to keep banging the drum, and you must keep banging it louder and louder and presenting your case so that, after it’s all over, there’s high, as my mother would say, motion, commotion, emotion, and no results. I want you to be successful in what you’re doing. Life is short, and so what we must do is try and use our energy so that we can get the best possible results. And I am so glad the Chairman said what he said, about sticking with this, addressing it, and we encourage all of you to work with us as we move forward, and with that, Mr. Chairman, I thank you.
(end transcript)

Rep. Cummings raises some important points: he's absolutely right that there are inequities in who gets diagnosed with autism, and in who has access* to the kinds of therapies, services and educational accommodations that can make an autistic person's life so much easier. He is absolutely right that these inequities are starkest along racial, ethnic and class lines.

He's also right to point out the gains autistic people and their families made with the passage of the Affordable Care Act. 

Unlike Rep. Issa, Rep. Cummings seems to place the highest priority on identifying and providing services that improve actual, living autistic people's lives, as opposed to the more academic, theoretical research about what causes autism or what autism is at the molecular level.

I admit that I find the latter category of autism research more interesting, because I majored in biochemistry and I want to know about everything at the molecular level, but there's no question that the former category of research is more useful.

You can make the argument that scientific research shouldn't be funded solely based on its potential usefulness, or lack thereof, and I'd agree with you, but given that we're dealing with a limited amount of money that's supposed to cover pure research and applied research and actual provision of services, and that right now the bulk of the funding from both public and private sources goes to pure research, I'm okay with funneling some of that (public) money into the other two avenues. Private charities (looking at you, Autism Speaks!) would, of course, continue to be free to allocate grant funding however they see fit. 

*As this article from the Los Angeles Times makes clear, these disparities persist even when services are supposed to be paid for by the state. In 2010, the California Department of Developmental Services spent $11,723 per child on white autistic children ages 3 to 6; on services for Asian children, they spent only slightly less: $11,063 per child. Black and Hispanic children fared the worst, with the state spending only $6,593 per child (just a little over half what they gave the white families!) on the former and $7,634 per child on the latter.

No comments: