Autism bill (not the one you’re thinking of) passes the House
December 7, 2006 by Kristina Chew, PhD
Filed under Health
The passing of the Combating Autism Act (CAA) on Wednesday has been applauded by autism organizations and by parents; passage of the CAA received additional attention in the media due to radio host Don Imus and his wife, Deirdre, joining in the fray. Another bill also passed the House on Wednesday that will also have a significant impact of autistic persons and their families, and that has received far less notice in the media. The Lifespan Respite Care Act (H.R. 3248) authorizes “authorizes competitive grants to states to make quality respite available and accessible to family caregivers, regardless of age, disability, or family situation.” Respite is often identified as a basic need by families of autistic children, especially as children grow older. Says Autism Society of America (ASA) President Lee Grossman:
“Families of children with autism consistently rank respite as one of their greatest family support needs, yet in many states and regions respite is in short supply or unavailable due to inadequate and uneven funding, lack of provider capacity and resulting waiting lists for such services……Families take great joy in supporting their child with autism; however they need regular breaks from their care giving responsibilities.”
Talking about “combating autism” suggests that one is going to “challenge” autism and wage an all-out fight and struggle against this “disorder”; that one is not “giving into it.” Talking about “lifespan respite care” suggests that one is thinking about how best to take care of one’s autistic child through his or her entire life; that one has accepted one’s child being autistic, and acknowledged that certain supports may be necessary for one’s child into adulthood. Acceptance does not have to be tantamout to “giving in”: I rather think acceptance is all about seeing what and who one’s child is, and understanding what are their strengths, and what they have still to learn.
An “accepting autism” act hardly has the ring that one about “combating autism” does, and perhaps that is why the CAA has gotten all the attention, while the Lifespan Respite Care Act has received little notice, despite the equally important measures for autistic persons it contains.
More information about the Lifespan Respite Care Act can be found at the ASA’s website.
CAA got more attention because it was backed by high powered media people… It’s as simple as that.
I’m very glad both bills passed; it’s important to up the ante regarding autism at all ages.
I’m glad these bills got passed also.
But I still see a large need for health insurance for this popluation..
It still bothers me that these families cannot get proper health care insurance.
I wish someone would bring more light to this subject. Health care brings more quality to life.
I feel health care is a human right not a privilege.
Think the ‘families’ have trouble?
Try being the autistic kid/adult (we ARE perpetual children, you know, ask anyone) who can’t get insurance.
And has intractable seizures.
Go price a Topamax/Keppra combo while you’re thinking about that. THEN wince.
I’m sorry kassiane, what I meant was families who have children and adults with autism..and not being able to get insurance for this population.
sorry about the misunderstanding…
I have been around autism for over 10 years and see these issues more and more about proper health care for this population.. I have also seen my share of health issues with this population. so please don’t think I don’t realize these situations.
Dealing with insurance is when diagnosis and definitions get scrutinized—-we have not had too much luck in getting many things covered for Charlie, and certainly not something like respite.
Yeah, because adults dont matter.
Keep just thinking about the poor poor parents.
Go look up those prices. Tell me what you find.
Kassiane:
As an organizer of a support group for parents and caregivers of people with autism in Bronx NY, It troubles me that you can not get insurance.
I advise parents and caregivers regularly regarding benefits and resources available to this community.
There has to be some benefit available to you. I’m not sure this forum is a place to discuss the details. If you would like to email me at info@bxangels.org I would be happy to give you my thoughts on what might be available to you.
This is not to say that you have not already looked into this, however, I wouldn’t mind brainstorming with you on this matter.
Gerard Petillo
Parents of ANGELS Bronx NY