Severely Autistic and Left Out in the Cold
Thursday, January 28, 2010 What’s life like for Arkansas families who have children with severe mental disabilities such as autism? One mom was telling me the following story:
“I got home from work with my three children, two 8-year-old twins who have severe autism and a small baby. I turned on the oven for a frozen pizza when one of the older boys pointed towards the bathroom. He wanted to use the potty but needed help. While I was in the potty helping the child who is not fully toilet trained, the other twin impulsively opened the oven and the baby crawled in. Luckily the oven hadn’t heated up, but how am I supposed to manage these kids while waiting for Medicaid waiver?”
Her story points to the extreme difficulties of families with severely autistic children. Her sons won’t be enjoying the summer off, because at their disability level there are no summer programs or after school programs in Arkansas. In fact the mother is unable to work regularly because of their needs.
The proposed Arkansas autism waiver has been suggested for ages 0 to 10, but these twins may never get in since they’re on the older side of the age range. The proposed waiver also would not include respite care or physical modifications to the home to ensure safety. A cold-turkey ending to services is also not going to work for the severely autistic.
Arkansas education programs are also only targeting young children, but middle and high school children are not currently served.
I think the proposed autism waiver only meets the needs of young, moderately disabled children. Yes, cases like these twins are going to be more expensive to treat. But is it really going to save Arkansas money to institutionalize these kids?
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Reader Comments (8)
My son is an aspie. He is also 13, which is already too old for the proposed autism waiver. I am afraid that schools in Arkansas do not have a clue. My son was partially caught with child find in the 4th grade, but those who evaluated him only saw part of the problem. It was not till two weeks before his birthday that we fianlly had the right mix of evaluations. The medical community (outside of the Little Rock area) seems to be reluctant to even try to diagnose our children. I was told recently that our kids (this generation) will help mold the future for Autism Awareness. I hate that my son will possibly not be one to benefit from the present, but working to do my part to raise awareness, and FAPE.
The proposed waiver is not written in stone--Maryland, for example, has waiver eligibility from 2 to 21. Children older than 10 are being left out in the cold; sure studies show that earlier interventions are more effective, but right now older children in Arkansas get almost no services from the medical and educational community.
Once the waiver is finalized the waiver age range will be set for 5 years until renewed by CMS, the federal medicaid manager. So even if Arkansas comes up with additional funding for the waiver, the money would continue to flow to the younger age ranges.
Moving the proposed Arkansas waiver down to infants is also fairly strange. Except for the initial enrollment lottery, there will probably be a multiyear waitlist for the new autism waiver. Enrolled infants will be preschoolers by the time services are delivered.
Autism awareness has come a long way, but still has a long way to go. It seems like "early intervention with ABA" is the mantra right now. I agree that early intervention is crucial, but it does seem like older kids/adults are pretty much ignored. It's almost like there is this idea, especially among those who don't have direct experience with these kids (e.g. lawmakers,etc.), that once kids turn 6 or 7 their ASD is set in stone and there isn't much that can be done for them. Over the last few years, autism awareness has been doing a decent job of promoting early diagnosis and early intervention, but not a good job of advocating for older kids/adults. Hopefully that will change. With the number of kids today that have autism, our society is going to face a crisis in 10 years dealing with all these autistic adults if it isn't addressed now. A study done a few years ago in England showed that less than 10% of high IQ, high functioning autistic adults were able to live independently, hold a job, etc.
Obviously we need the HCB waiver (the "big" waiver) funded fully - not just for the autism community, but for the benefit of all individuals w/ developmental disabilities. Wouldn't it be a powerful statement for everyone who is on the big waiver "waiting list" to assemble at the Capitol one day during the session in February? We could even hold up large posters w/ our "number" and some info about our families. This could be an effort to bring together everyone in the disabilities community to advocate for something that will benefit EVERYONE.
Just a thought.....
-Di
Big Waiver certainly meets the need for respite care, but there is still almost no afterschool, recreational, or summer opportunities for the disabled in Arkansas. Waiver just provides a caretaker but can leave the disabled isolated at home.
I would like a lot more emphasis on building therapeutic recreation programs and on improving the disabled's right to access local opportunities. I was just looking at a local camp program for children from troubled backgrounds as a possible recreation opportunity. It's a nonprofit with block grants from the school district. But on the application it states in big letters, "NOT FOR CHILDREN IN SPECIAL EDUCATION."
I think Dianna has a great idea!!! But for what Dr. Greene told me, we will have to wait until next year to try and get more funding! :(
I love the idea of after school care and summer programs. It would seem to me to be more cost affective and help more people!
Little Rock has a lot compared to Ft. Smith, Ar. We have no programs for the disabled..not even private ones you can pay for. Respite care doesn't have enough provider etc.
The new waiver program will only accept 100 at a time...I think the program is 3 yrs? And it will be in populated areas that already have services...not for places like here. AND it is not for tweens...we so need something for tweens.
In areas lacking services an individual assistance would of course make sense, but why are regular recreation programs allowed to discriminate against the disabled?
Even in the Little Rock area, Carole, parents with moderate and severe autism really have almost no programs. Little Rock Therapeutic Recreation will have a summer program with 20 slots for all disabilities. If you need an aide, you'll have to bring your own helper. The rest of the disabled summer programs are all for half days, a week, etc.