[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Autism Speaks’ Dan Unumb Weighs in On Medicaid Change
August 26, 2014
(August 26, 2014) – Kaiser Health News (KHN) has examined how the states are reacting to the federal government’s July directive to cover medically necessary treatments for autism for individuals under age 21. An estimated one-third of all children with autism receive primary coverage through Medicaid.
The announcement by the Centers for Medicare & Medicaid Services (CMS) makes clear that autism treatment must be addressed under Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services which cover Medicaid-eligible children up to the age of 21. The states are now assessing how to implement the change.
While coverage of applied behavioral analysis “isn’t explicitly required” by the new guidance, KHN noted, advocates expect it to be covered.
“Since ABA is the most accepted, effective treatment that isn’t experimental and investigational, you can’t just exclude it entirely,” Daniel Unumb, executive director of Autism Speaks’ Legal Resource Center told KHN.
In California, where the state has already begun steps to expand Medicaid coverage, an additional 6,000 children with autism could benefit under the new federal guidelines, said Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage.
“For them it’s going to be a huge deal,” said Jacobson, who worked with Autism Speaks to help enact California’s 2011 autism insurance reform law.
Unumb said over a dozen states had reached out to him for guidance on how to implement the new directive.
Federal Officials Order Medicaid To Cover Autism Services
By Michelle Andrews August 26, 2014
When Yuri Maldonado’s 6-year-old son was diagnosed with autism four years ago, she learned that getting him the therapy he needed from California’s Medicaid plan was going to be tough.
In addition to providing health insurance for low-income children, Medi-Cal, as California’s plan is called, does provide coverage of autism services for some children, like Madonado’s son, who are severely disabled by the disorder, in contrast to many states which offer no autism coverage. But Maldonado’s son was approved for 30 hours a week of applied behavioral analysis (ABA), a type of behavior modification therapy that has been shown to be effective with autistic children, and she was worried that wasn’t enough.
So she and the boy’s father, neither of whose jobs offered health insurance, bought an individual private policy for their son, with a $900 monthly price tag, to get him another 10 hours a week of ABA therapy, as recommended by a clinical psychologist.
“I don’t know any family that can really afford that,” says Maldonado. “We made some sacrifices.”
That should be changing soon. In July, the Centers for Medicare & Medicaid Services announced that comprehensive autism services must be covered for children under all state Medicaid and Children’s Health Insurance Program plans, another federal-state program that provide health coverage to lower-income children.
Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn’t explicitly required, advocates expect it will be covered.
“Since ABA is the most accepted, effective treatment that isn’t experimental and investigational, you can’t just exclude it entirely,” says Daniel Unumb, executive director of Autism Speaks’ legal resource center.
“It’s going to help a ton,” says Maldonado.
Like California, some states provided limited coverage before to certain age groups, for example, or up to a specified dollar amount. But the new policy is important because it requires mandatory coverage for everybody under 21, says Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, a Burlingame, Calif.-based advocacy group.
In a coverage bulletin last month, CMS said that state Medicaid programs must cover a full range of autism services under the “early and periodic screening, diagnostic and treatment services” provision of the law. The EPSDT benefit, as it’s called, covers any services that are medically necessary to correct or ameliorate physical or behavioral conditions in children up to age 21.
Some states are concerned about the new requirement, says Matt Salo, executive director of the National Association Of Medicaid Directors.
“The nexus of covering a lot of kids and a fairly unknown condition and treatment for that condition, combined with EPSDT, anytime you get that you get states a bit concerned because there’s very little way to control costs in that arena,” says Salo.
The new coverage guidelines apply to children with autism spectrum disorder, a group of developmental conditions including autistic disorder and Asperger syndrome. Roughly 1 in 68 children have the disorder, according to the Centers for Disease Control and Prevention. The Association Of Maternal Child Health Programs estimates that just over a third of them get coverage through Medicaid or CHIP.
In California, to get coverage under the state’s Medicaid waiver program children need to be substantially disabled and have a full autistic disorder diagnosis, says Jacobson.
“It doesn’t cover people with Asperger’s syndrome or other forms of autism spectrum disorder,” she says, leaving children with language or certain functional abilities unable to get services.
Jacobson estimates that up to 6,000 new children in California who are currently ineligible under the waiver program may qualify for autism services under CMS’ new guidance.
“For them it’s going to be a huge deal,” she says.
The new coverage rules went into effect July 7 when the CMS guidance was issued, although many states are still setting up procedures. More than a dozen states have contacted him about implementing the new policy, says Unumb.
Advocates across the country in recent years have been working to build support for better insurance coverage of autism services, including Medicaid coverage. The federal government’s announcement followed a number of recent court cases, including federal circuit decisions in Florida and Ohio, affirming that applied behavioral analysis services were required under the Medicaid EPSTD benefit. Those decisions bolstered advocates’ long campaign to get such services covered, Unumb says.
In addition, 37 states and the District of Columbia have passed laws that require private plans to cover autism treatment, according to Autism Speaks. “It reached that boiling point where CMS had to step in and issue this guidance,” says Unumb.
Caring for someone with autism costs more than $3 million over a lifetime, according to a 2007 study published in the Archives of Pediatrics and Adolescent Medicine.
Advocates argue that early intervention, even pricey applied behavioral analysis that may cost more than $50,000 annually, can save money in the long run. Nearly half of children who receive early interventions such as applied behavioral analysis can achieve mainstream status, according to a 2005 study published in the American Journal of Mental Retardation.
This article was updated on Oct. 21 with additional information from Maldonado about her family’s situation.
Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.
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.