Archived | Autism Speaks: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law | Circa October 12, 2011 #NotAnAutisticAlly #BanABA

Ban ABA & Boycott Autism Speaks

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

Update: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law

October 12, 2011

Autism Speaks

By Stuart Spielman

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.

The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.

The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.

The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.

The IOM recommends that HHS use the following process to establish the initial essential health benefits package:

1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health

2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford

3. Weigh possible trade-offs through public discussion of benefit costs

4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient

The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

  • 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
  • 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
  • 38.6% of families who have a child with autism have financial problems (16.7%)
  • 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.

HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”

Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.



Note/Warning:

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 workIn 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.


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