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Long Term Care and Autism: A Letter to Congressman Dan Burton

Long highwayCongressman Dan Burton
2308 Rayburn House Office Building
Washington, D.C. 20515-0001                                                           October 16, 2012

Dear Congressman Burton,

I appreciate the work you are doing on behalf of our children with autism. I’m writing regarding Community Living Assistance Services and Supports program (CLASS Act), a Title VIII component of the Patient Protection and Affordable Care Act. The Act is supposed to provide long term care for our disabled adult children, including adults with autism.

In her letter to Congress, October 14, 2011, Secretary Sebelius declined to implement the CLASS Act because it did not meet actuarial requirements and, as she wrote "I do not see a viable path forward for CLASS implementation at this time." Yet as the Secretary acknowledged in that letter, the need for long-term care for developmentally disabled adults has not gone away.

I’m working to create a national program for LTC (Long-Term Care) community living services and supports that fills the vacancy left by the CLASS act. It might be a reworking of the Act, or something else entirely.

My question: Which of our elected representatives in Washington has made autism issues his or her own? Who will follow up on the work you are doing?

Best,

 

Dan E. Burns, Ph.D.

Chair, The Autism Trust USA

Contributing Editor, Age of Autism

Adult Issues Liason, AutismOne

daneburns45@gmail.com

Comments

kenneth Kernitzki

Open for options. And comments. Thank you

Gina Krobath

Dan- I showed your letter to my congressman who helps with my brother and his staff said that he would forward it to DC too!!!

Dan E. Burns

Benedetta and Gina, several people have contacted me privately. No word from Washington yet. Thanks to all who responded.

Gina Krobath

Any response yet? The sad part is I don't know if anyone will really get involved until they are effected by autism.

Angus Files

Care what does that mean exactly..

http://www.bbc.co.uk/news/uk-england-bristol-19990628
he family of a man who was punched in the face as a patient at a private hospital in Bristol is calling for the incident to be re-investigated.

Eleven care workers are to be sentenced later for the maltreatment and neglect of five patients at Winterbourne View.

But a BBC Inside Out West investigation has found evidence of alleged abuse involving different staff members.

Police have agreed the assault on Ben Pullar was "not acceptable" but said they would not re-open the case.

Mr Pullar is autistic and bi-polar, with severe learning difficulties, and when he was 18, he spent almost a year at Winterbourne View from July 2009.

He lost two teeth when he was punched in the face.

His twin, Tom, said his behaviour changed drastically after going to the hospital.

"He's burst out crying on me and demanded to talk about Winterbourne View - and this is two years after Winterbourne View - so it still affects him today," said the 21-year-old.

John Stone

Dan

Thank you for writing this - the cruellest autism qestion of all. In the UK it is a little better, but for how long? Even if we aren't allowed to talk in the wider public arena about the causes, and we are not allowed to talk about the exponential increase in numbers there is some recognition of social need. But they are not planning to address the real costs.

John

Dan E. Burns

Many of our ASD adults -- perhaps 80% or more -- are unemployed or underemployed. It costs $800/week private pay to care for our kids in the community. I know that because I’m helping staff a group home.

Seventy-five percent of our precious children’s lifespan is after graduation, and many will need services and supports for life. Medicaid is under attack. The Governor of Texas has said he won’t cash the check. Can you afford to pay the equivalent of college tuition for your child by yourself until you die and beyond? I can't. I figure maybe I can pay a third of it. Maybe my disabled son can work enough, with support, to pay a third of it. I need help on the rest.

Ruth Christ Sullivan got IDEA passed, and that’s why our kids have had a free and appropriate education. They told her it couldn’t be done but, working with others, she did it. Now it’s our turn. Whom do you know in Washington who can help us make long-term care for our adult children affordable? Please share names and ideas.

Benedetta

Well it is only the 22 of Oct, so it has only been a week.
Let us know if you get a response.
My biggest fear there is no one in Congress after all they have long taken care of this problem in 1986 when they so filled with Christian charity passed the Vaccine Compensation Court deal -- and said that it was nessacary to sacrafice children for the greater good.

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