[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Advocates Report on Testimony at HHS ‘Listening Sessions’ Held Across U.S.
December 09, 2011
NEW YORK (Dec. 9, 2011) — The U.S. Department of Health and Human Services (HHS) conducted a series of “listening sessions” in cities across the United States during November to help guide its implementation of the sweeping federal health care reform law enacted by Congress in 2010. The listening sessions gave the public an opportunity to declare what health care benefits children and adults with autism should receive.
The HHS will use the public input to help determine what essential benefits should be included in Affordable Insurance Exchanges which were created under the 2010 law. The Patient Protection and Affordable Care Act (PPACA) is being phased in over a period of years.
A number of autism advocates testified at the sessions and offered their reactions:
Gene Bensinger, Autism Speaks board member
“I relayed the major points why Applied Behavior Analysis (ABA) is an essential medical benefit and why insurance coverage is absolutely necessary and cost efficient. I also said that the 29 states passing mandates says that the market has spoken and people want coverage for this therapy. I tried to personalize it a bit for HHS with my own experience of mega bills and no reimbursement.
“Nancy De Lew, deputy director of HHS’ office of legislation, made the point that their impression of the Washington, DC session was that consumers wanted more mandates and specificity. They mentioned that this was ‘especially true re: “rare” disorders like autism’ and the plan provider and insurance folks wanted exactly the opposite.”
Farah A. Chapes, government affairs director, Marcus Autism Center and Children’s Healthcare of Atlanta
“I would estimate there were 150 people who attended. We arrived very early and were first for comments, which I think was a good thing because the panel was alert and engaged. Getting there early also gave us the opportunity to ‘chat’ with panel members.
“There was a huge mix of advocates, providers and lobbyists from what I could tell.”
Feda Almaliti, Autism Health Advocates
“The essential benefits package (EBP) is required by the Patient Protection and Affordable Care Act (ACA), or referred to by some as ‘Obama Care.’ Whatever you want to call it, the point is that EBP is going to set the minimum standard for basic health care services in this country. EBP will be offered in the exchanges (yet to be set up) – the theory being that all the plans that are not in the exchanges will have to offer EBP as well in order to remain competitive.
“I, along with a few other autism advocates, gathered in the basement of the San Francisco federal building for a ‘listening session’ on the EBP. After standing for almost two hours in line, I held up my son’s picture and in 90 seconds tried to convey his story – the story of a little boy who everyone had given up on, the struggle to get him treatment, and success of that treatment.
“I was not sent by any particular group, I went because I cared and was scared. I knew that if behavioral health treatments such as Applied Behavior Analysis (ABA) were not specifically defined in the package, our community of millions could be severely impacted.
“There are some basic guidelines to defining the EBP package. But what falls under those sections for kids with autism is questionable, and the process is not so open. It’s not like there’s going to be a vote. Cost will probably be the key to formulating the package as it is for most things.
“My take home message to the HHS staff was, we either pay now or we will pay later.”
Megan Ott, nurse practitioner, The Children’s Hospital of Philadelphia
“It was well attended—over 100 people were present. We were able to get our points in—a parental perspective, increasing health demands/complexity, and the need for behavioral health services, as well as habilitative services.”
Jill Tappert, director of private insurance policy, Autism Society of Colorado
“The Autism Society of Colorado organized a group of professionals and parents to testify at the Listening Session in Denver. We each made several points during our allotted two minutes that, taken together, created a compelling case regarding the need for and effectiveness of habilitative therapies, including ABA Autism Therapy, to treat and enable individuals who have an ASD.
“We have made progress in Colorado though our state mandate (which includes small group policies); HHS should ensure that progress is continued and not halted, or even worse, undone. We believe that individuals who have an ASD deserve the opportunity to access critical medical treatment and to live healthy, safe, productive and fulfilled lives.”
The Autism Community Is Not The Autistic Community
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.