Archived | Autism Speaks Government Relations New: Subcommittee Holds Hearing on the Role of Medicaid for Americans with Disabilities | January 16, 2008 #AutisticHistory #BanABA

Government Relations NewsSubcommittee Holds Hearing on the Role of Medicaid for Americans with Disabilities

Washington, DC (January 16, 2008) – The House Committee on Energy and Commerce – Subcommittee on Health, chaired by Congressman Frank J. Pallone (NJ), held a hearing on Wednesday, January 16, 2008, investigating Medicaid’s role in the lives of individuals with disabilities.

The hearing, entitled “Helping Families with Needed Care: Medicaid’s Critical Role for Americans with Disabilities,” focused on the importance of community-based care, school-based care, home-based care, and long-term care for those in the Medicaid system. Also discussed were the attacks on Medicaid by the current Administration and the effect of various agency rules and regulations on the Medicaid population. 

We thank Congressman Nathan Deal (R- GA) for submitting testimony on behalf of Autism Speaks. 

Click here to read Autism Speaks’ submission to the subcommittee (PDF). 
Click here to read the press release from the Committee.
Click here to read Energy and Commerce Committee Chairman John D. Dingell’s full statement from the hearing. 


JANUARY 16, 2008

Autism Speaks greatly appreciates the opportunity to present this written testimony to the Subcommittee. Medicaid plays an extremely important role in the lives of the many thousands of American families that are affected by autism.

• Both by design and default, Medicaid plays a critical role in the lives of persons with autism.
• The Centers for Medicare & Medicaid Services (“CMS”) has been pursuing policies contrary to the needs of persons with autism.
• Rather than limit autism services in the schools and out, the CMS should support successful state service models.

Autism Speaks, the world’s largest autism advocacy organization, welcomes the opportunity to offer written testimony on Medicaid’s critical role for Americans with autism. A complex neurobiological disorder that typically lasts throughout a person’s lifetime, autism is part of a group of disorders known as autism spectrum disorders.

Today, one in one hundred and fifty individuals is diagnosed with an autism spectrum disorder. Autism spectrum disorders are more common than pediatric cancer, diabetes, and AIDS combined. They occur in all racial, ethnic, and social groups and are four times more likely to strike boys than girls.

Autism spectrum disorders impair a person’s ability to communicate and relate to others and are associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Autism spectrum disorders vary greatly in severity. Some people with autism spectrum disorders need little or no support. Others need a great deal of help to live safely in their communities.

Private health insurance often fails to provide the assistance needed by people with autism spectrum disorders. Some private health insurance policies even contain blanket exclusions for the treatment of autism. Even when private health insurance provides some benefits, it almost always denies benefits for the behavioral treatments long established as effective.

Autism Speaks is advocating for change in state laws that allow insurers to deny or severely limit coverage for autism spectrum disorders. For instance, Autism Speaks strongly supports Pennsylvania House Bill 1150, which would require private health insurers to provide medically necessary coverage. In Pennsylvania and elsewhere, the inadequacy of private health insurance coverage has focused attention on the critical role of Medicaid in serving persons with autism spectrum disorders.

Medicaid spending for services for people with autism spectrum disorders and other developmental disabilities has increased substantially in recent years. Children with disabilities comprise a significant portion of all Medicaid recipients, and an even more significant portion of disabled children use the Medicaid system as their primary insurer. While the number of persons with autism spectrum disorders served by Medicaid is not known, studies suggest that the prevalence of autism spectrum disorders among Medicaid enrollees has increased over time. This rise parallels disturbing trends in school census and epidemiological data of ever greater numbers of affected children.

Medicaid serves persons with autism spectrum disorders through state plan services to low-income persons and persons with disabilities, and through specialized waiver programs that serve targeted populations without regard to the income of anyone other than the individual served. Five states have waivers targeted solely at persons with autism spectrum disorders. One such state is Maryland, the first state in the nation to target Medicaid services specifically to children with autism spectrum disorders. Maryland’s waiver provides intensive individual support services, after-school activities, respite care, supported employment, case management and other services to the most severely affected children in the state. Like all waiver programs, Maryland’s program is capped. Approximately nine hundred children are served by the waiver. Another twenty-three hundred children are on a waiting list. Unless the number of waiver slots is expanded, these children may wait years for services.

In contrast to waiver services, Medicaid plan services are not limited to a fixed number of slots and can be delivered in schools. The Medicare Catastrophic Coverage Act of 1988 allows school districts to receive payment from Medicaid for health services listed in an individualized education program that are delivered to Medicaid-eligible children. When necessary services are covered by a state Medicaid program, the financial responsibility of the state Medicaid agency precedes that of the school system.

Recent actions by the Centers for Medicare & Medicaid Services call into question the agency’s commitment to fulfill that responsibility. For instance, proposed agency rules would deny federal financial participation for habilitation services, as well as for rehabilitation services furnished as “intrinsic elements” of educational programs.

Autism Speaks and other disability groups have been actively engaged in this rulemaking, and have submitted comments to CMS criticizing the proposed rules. Although the Medicare, Medicaid, and SCHIP Extension Act of 2007 blocks them from being implemented before June 30, 2008, the proposed rules are especially worrisome in light of the cutoff in 2007 of federal financial participation for applied behavioral therapy services for Medicaid-eligible South Carolina school children with autism spectrum disorders.

Autism Speaks understands that CMS acted in part because services were limited to school settings. The cutoff led South Carolina to discontinue funding services for almost 3,000 children and brought to an end a successful eight-year old state program.
Autism Speaks is also concerned about interim final regulations on optional state plan case management services.

These regulations, which become effective on March 3, 2008, would limit claims for federal financial participation for case management services. This could only exacerbate the problems school and public health systems face in financing services for children with autism spectrum disorders. The Maryland State Department of Education, for instance, estimates that the new regulations will reduce federal financial participation for autism waiver services by $700,000.

Autism Speaks fears that restrictive CMS policy will chill state efforts to provide appropriate services to persons with autism spectrum disorders. We worry about a bureaucratic Alphonse and Gaston routine, with the federal government looking to the states to fund services, the states looking to the federal government, and persons with autism spectrum disorders suffering in consequence. There is no real economy in engendering service cutbacks to a vulnerable and growing population of disabled Americans.

Finally, Autism Speaks urges the Subcommittee to act on H.R. 1881, the Expanding the Promise for Individuals with Autism Act of 2007 (the “EPIAA”). This legislation authorizes funding for a comprehensive set of federal-state partnerships to provide evidence-based treatments, interventions, and services for those with autism spectrum disorders. H.R. 1881 will fill gaps in Medicaid services and provide help to those not eligible for Medicaid. The EPIAA is an appropriate and necessary follow-up to the Committee’s profound work in 2006 on the Combating Autism Act, for which the autism community will be forever grateful.

Again, Autism Speaks greatly appreciates this opportunity to present its views, and stands ready to assist the Subcommittee in any way it can to ensure that American families receive all necessary assistance in dealing with autism spectrum disorders.

The “Autism Community” is not the Autistic Community | The Autism Community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. 
Most of what the world know about Autism is sourced from the non-autistic “Autism Community.”


Committee on Energy and Commerce  
Rep. John D. Dingell, Chairman

For Immediate Release: January 16, 2008Contact: Jodi Seth or Brin Frazier, 202-225-5735

Dingell, Pallone Highlight Committee’s Commitment to Disabled Americans

Washington, DC –The Committee on Energy and Commerce held its first hearing of the year today to examine Medicaid coverage for people with disabilities. The Subcommittee on Health hearing, entitled “Helping Families with Needed Care: Medicaid’s Critical Role for Americans with Disabilities,” focused on efforts to ensure that people with disabilities can exercise their right to live in the least restrictive environment available and recent legislative and Administrative actions that affect access to community care services.

“One of the challenges we face is how to improve access to community services instead of making nursing homes and institutions the first options for care,” said Rep. John D. Dingell (D-MI), Chairman of the Committee on Energy and Commerce. “We know that those who receive community-based services have an improved quality of life, and are better able to be near family and friends.”

The Medicaid program provides essential funding for millions of Americans living with disabilities, including seniors in nursing homes, children born with birth defects, people struggling with mental illness or intellectual disability and adults whose disabilities occur later in life. Medicaid is currently the nation’s primary source of funding for the delivery of community-based and long-term services to the disabled. However, funding traditionally favors nursing home care over the range of community-based services available. Witnesses from the Kaiser Family Foundation, Family Voices, ADAPT, the ARC of New Jersey, ResCare and Amerigroup of Texas provided testimony regarding Medicaid’s impact on disabled Americans.

“Over the years, Medicaid has enabled millions of Americans with a wide range of disabilities to live independent lives,” Pallone said. “However, as America continues to age, we are faced with an impending crisis in long term care. With the introduction of the CLASS Act, the Community Choice Act and the Direct Support Professionals Fairness & Security Act, we are offering a new approach that builds upon our existing safety net system and helps our elderly finance the long term care they need to remain active and productive members of their communities.”

Witnesses and Committee Members also discussed the Administration’s proposed Medicaid rules, which would limit reimbursement to states for rehabilitative and school-based services. Prior to adjourning in 2007, Congress enacted a moratorium on implementing the rules. The six-month moratorium, which would delay the effective date to June 30, 2008, was included in the Medicare, Medicaid, and SCHIP Extension Act of 2007. The rules, if implemented as proposed, would limit or eliminate transportation and health care services that are essential to disabled Americans.

Chairman Dingell’s full statement



January 16, 2008 

Today’s hearing will focus on a critical source of health care for Americans living with disabilities: the Medicaid program. Millions of people with disabilities — frail seniors in nursing homes, children born with birth defects, people struggling with mental illness or intellectual disability, adults whose disabilities occur later in life — depend on Medicaid for needed services, including services not available from other sources of insurance.

Medicaid provides almost 40 percent of all long-term care services delivered in this country and covers nearly half of all nursing home expenditures in the U.S., making it the Nation’s largest single payer of long-term care.

One of the challenges we face is how to improve access to services in the community rather than require admission to nursing homes to receive them. Those who receive community-based services have an improved quality of life, and are better able to be near family and friends. States have taken some steps to improve the availability of community services. The “Money Follows the Person” demonstration, which provides States one year of enhanced funding for each person transitioned back into the community, is a good first step. This has an unfortunate requirement, however, that a person must first live in an institution for six months in order to be eligible for this transition program, which is counter productive to this goal.

The availability of waivers, and the new State option to provide community and home-based services without a waiver, provides critical tools for the transition to community care. But again, the income and resource thresholds often mean that people with disabilities must choose between better-paid employment and the health services that allow them to remain in their community. And yet, tens of thousands of people are on waiting lists for waiver places, nearly 260,000 in 2005, a clear indication of the need to expand these vital programs.

Unfortunately, while States have been making some progress at transitioning individuals back into their communities, the Administration is trying to hold them back rather than forward. It has proposed regulations that will seriously curtail or eliminate the ability of people living with disabilities to receive needed services. For example, limiting transportation services for disabled children who receive health services in schools, and restricting rehabilitation services to those with long-term disabilities because they may never fully recover, is short-sighted and a source of harm for those affected by such regulations.

I thank the witnesses who are here today. Their testimony will detail the challenging task of improving community options for people with disabilities. Medicaid has given us an excellent foundation, but more work is needed to update its provisions. I also welcome our visitors and guests today, who are both present at this hearing or watching this broadcast. We are pleased you are here and I commend your efforts in this worthy endeavor.



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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