[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Autism Speaks Joins Outcry Over Cutoff in ABA services
May 10, 2013
SACRAMENTO (May 10, 2013) — Autism Speaks has joined with advocacy groups from across California to protest the cutoff of ABA services for 900,000 children who are transitioning from the Healthy Families Program to Medi-Cal.
The coalition is urging Gov. Jerry Brown to require that the ABA services be retsored through Medi-Cal. Read the statement below.
Autistic Kids Being Denied Critical Care As State Fails To Keep Its Promise
Children transitioning from Healthy Families to Medi-Cal are suffering from disruption in vital therapies despite outcry from families, advocates, and legislators
SACRAMENTO, CA – A coalition of children‟s health and autism support organizations today stated that hundreds of California‟s children are suffering from disruptions in critical health care services due to the state‟s transition from the Healthy Families Program to Medi-Cal. In particular, children in Healthy Families who had been receiving standard therapy for Autism Spectrum Disorders (ASD) are being denied these services in Medi-Cal, often with less than a week‟s notice.
Alice Mayall, a mother of three from Livermore, has experienced this disruption directly, as her son has not been able to receive the Applied Behavior Analysis (ABA) services, the standard therapy for ASD that his Healthy Families health care team had deemed medically necessary. “Every day that my son goes without services is a massive loss to his health and well-being and it directly affects our family,” she stated. “The process of trying to get solid answers from different agencies and advocating for continuation of care has been tortuous.”
Governor Brown‟s Administration has continually promised legislators, stakeholders, and families that no children would lose access to services during the multi-tiered transition of over 900,000 children from Healthy Families to Medi-Cal. In December 2012, before the transition began, California Health and Human Services Agency Secretary Diana Dooley was quoted as saying that officials would not shift children from Healthy Families to Medi-Cal unless they were sure the children would receive adequate health care: “„[W]e will delay the transition‟ for certain children if they are unlikely to receive adequate care under Medi-Cal. However, she said, „[a]t this point, everything is on track.‟”i
Now, after the transition of over 600,000 children to Medi-Cal, children‟s health advocates say it is clear that everything is not on track. “These problems represent a shameful failure to provide for children who the state
has known for at least six months were at risk of losing services,” said Ted Lempert, President of Children Now. Advocate groups, health plans, and legislators have warned the Administration about continuity of care concerns for children receiving ABA services since last November.
Kristin Jacobson, President and Co-Founder of Autism Deserves Equal Coverage, noted that the state has acknowledged that children with ASD are harmed by any delays or interruptions to behavioral health treatment services: “In August, 2012, when it passed emergency regulations specifically to ensure children with ASD in Healthy Families had access to ABA services that are available in all other state-regulated health insurance settings, the state cited „imminent, serious, and irreparable harm to the public‟ if these services were not available.ii How can the Administration allow these children and others in Medi-Cal to be exposed to the same irreparable harm?”
Advocates also worry that the interruptions in autism services may foretell broader challenges if children transitioning from Healthy Families to Medi-Cal are unable to access needed care in a timely manner. “We know that only a small percentage of affected families ever file a complaint, and since the state‟s monitoring of the Healthy Families transition has been woefully inadequate, other continuity of care issues may take a while to surface,” added Karen Fessel, Executive Director and founder of the Autism Health Insurance Project. “The state did not do enough to thoughtfully prepare for this transition, and it shows.” Advocates urge the state to more closely monitor the transition to ensure that no additional children are harmed.
Families are demanding action. Over 1,750 parents and family members have signed on to a petition sponsored by MomsRising (available at:
http://action.momsrising.org/sign/HFPTransfer_Autism) urging Governor Brown “to restore services for impacted kids and suspend transferring any more children to Medi-Cal until you can assure parents that their children will not lose vital health services.”
1) Alice Mayall‟s complete personal story; other family stories from across the state are available.
2) MomsRising petition
Ted Lempert, President – Contact Elizabeth Cavagnaro at 510-763-2444 x104 to speak to Ted, or contact Ted directly at 510-763-2444 x155 or 650-245-8166
Kelly Hardy, Director, Health Policy – 510-763-2444 x126
Children’s Defense Fund California
Jamila Edwards, Northern California Director of Children’s Defense Fund-California – 510-663-3780
California Coverage & Health Initiatives
Suzie Shupe, Executive Director – 707-527-9213
Autism Deserves Equal Coverage
Kristin Jacobson, Co-Founder and President – 650-759- 5737
Autism Health Insurance Project
Karen Fessel, Executive Director – 510-325-0975
The Children’s Partnership
Wendy Lazarus, Founder and Co-President – Contact Carrie Spencer at 310-260-1220 to speak to Wendy, or contact Wendy directly at 310-710-9830
PICO California Project
Jessica Rothaar, Lead Health Care Campaign Organizer
Ashley Boyd, Director of Member Engagement/Senior Campaign Director – 415-595-8527
Alliance of California Autism Organizations
Kristin Jacobson, Steering Committee representative –
Lorri Unumb, VP State Government Affairs – firstname.lastname@example.org
The Autism Community Is Not The Autistic Community
More With Autism Votes
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.