[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
2011 Autism Law Summit
October 26, 2011
Hope and ideas are two things that always matter.
~ H. Jackson Brown, Jr.
by Judith Ursitti, Director, State Government Affairs
The 6th Annual Autism Law Summit convened this past weekend at a new location — the University of Utah’s Susan J. Quinney School of Law, but with the same underlying theme — the passage, implementation and enforcement of meaningful autism insurance reform across the nation. Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.
It’s worth noting that the Summit has evolved from an informal gathering of a handful of advocates passing around a hat to collect pizza money, to a capacity-level event, involving more than 100 registrants from 33 states. And once again, hope and ideas intersected with the blood, sweat and tears of parents, providers, lawyers, legislators and regulators, creating undeniable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.
A highlight of the event was the presentation of the 2011 “Speak Out” award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.
Special guests, Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.” Honored as part of the presentation were the five states that passed legislation since the previous Summit: Arkansas, Virginia, West Virginia, Rhode Island and California.
Other highlights of the jam-packed agenda included:
· A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform
· A panel discussion on “Convincing Self-Funded Companies to Add an Autism Benefit.” The panel consisted of providers, PhD, BCBA-D and Colleen Allen, PhD, CCC/SLP; employer representatives Doug Green of DTE Energy and Jeremy Shane of HealthCentral; as well as advocate Karen Fessel, Dr. PH (You can learn more about convincing your self-insured employer to add an autism benefit here.)
· An analysis of the provider credentialing issue by panelists Misty Bloom, JD of the Behavior Analyst Certification Board; Andrea Chait, PhD, BCBA-D, NCSP, and Jill McLaury, MS BCBA
· An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger and Dave Honigman
· A presentation on implementation issues by panelists Billy Edwards, MS, BCBA, of Texas; Mike Wasmer of Kansas, and Amy Weinstock of Massachusetts sharing their experiences implementing autism insurance laws in their respective states
· A primer on developing successful grassroots advocacy at the state level to gain autism insurance reform by Shelley Hendrix, Autism Speaks, Director of Grassroots Development
· A robust discussion of “Enforcement of Coverage” by panelists Adam Cole, JD, General Counsel, California Department of Insurance; Jacqueline Eckert, MedClaims Liaison; Dan Unumb JD; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the Missouri Department of Insurance
· A mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates
· Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement
As attendees dispersed Sunday morning, heading back home to different parts of the country, smiles and hugs of encouragement were shared by colleagues old and new. Once again, the connection of hope and ideas had been sparked. Truly, 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, step by step, state by state, plan by plan, family by family.
More With Autism Insurance Reform
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.