[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
On the road to autism insurance reform: The Autism Law Summit
May 26, 2016
As a full-time autism advocate, the highlight of my professional year is the annual Autism Law Summit. The Autism Law Summit is a national gathering of self-selected advocates who want to change autism law and policy for the better. I started organizing the Autism Law Summit in 2007, before I even went to work for Autism Speaks.
First held in my then-hometown of Charleston, South Carolina, the inaugural Autism Law Summit drew about a dozen attendees, who paid their own way to Charleston to spend a day around a conference table, strategizing about ways to change the world.
The Autism Law Summit has since grown to an annual event with about 150 participants. It draws the movers and shakers in the autism world – people who want to make a difference in their states and want to share ideas with like-minded superstars. Attendees are parents, grandparents, self-advocates, providers, researchers, doctors, lawyers, lobbyists, legislators – anyone who is interested in understanding, discussing, and improving autism law and policy.
The 2016 Autism Law Summit is planned for October 6-9 in Albuquerque, New Mexico. For the first time, the Autism Law Summit is being held in conjunction with another event – the annual Southwest Conference on Disability. This year’s Southwest Conference on Disability is called “Reducing
Disparities for People with Disabilities Through Systems Change,” and it runs October 5-7 at the Albuquerque Convention Center. Both events take place within the timeframe of the annual Albuquerque International Balloon Fiesta, which is October 1-9.
The Autism Law Summit is open to anyone who wants to join a high-level conversation about autism law and policy. Traditionally, conversations center on autism insurance reform, which is how I got my start in autism advocacy and thus the raison d’etre for the Autism Law Summit. Insurance reform is also the initiative that has been the cornerstone of the Autism Speaks state government affairs effort for the past decade. As such, Summit conversations typically include not only advice on how to pass autism insurance legislation, but also discussions on implementation of the laws in the 40+ states where reform bills have already passed.
The 2015 Autism Law Summit, held in Mobile, Alabama in November, also included discussion of possible future policy initiatives in areas such as Employment, Housing, Safetyc and Education. Attendees from 40+ states and 4 countries suggested areas in which reform is needed and also shared ideas that are working well in their states.
Dr. Jane Howard from the Kendall Centers/Therapeutic Pathways and California State University-Stanislaus was named “Provider of the Year” for her longstanding contributions to autism policy. Dr. Howard teaches undergraduate and graduate courses in Applied Behavior Analysis as well as serving children with autism in home and clinic-based programs. A longtime board member of the California Association for Behavior Analysis, Dr. Howard has been in a leader in encouraging behavior analysts working in autism to engage in legislative affairs.
We also recognized our first “International Advocate of the Year,” awarded to Professor Mickey Keenan from the University of Ulster in Northern Ireland. Keenan was selected for his ongoing advocacy and dedication to ensuring that individuals with autism have access to Applied Behavior Analysis. In particular, Prof. Keenan led a team in the development of an online resource called “Simple Steps,” which explains and illustrates the concepts and application of behavior analysis in user-friendly terms. Parents and professionals without access to well-funded ABA programs can use Simple Steps to improve their interactions with individuals with autism. Keenan and his team spent years developing and disseminating Simple Steps throughout Europe and beyond, and the program has now been translated into multiple languages.
The “Parent Advocate of the Year” award was shared by a trio of young parents who became leaders in the fight for autism insurance reform in North Carolina. Kyle Robinson, Wendy Mies, and Brian Pearce – all of whom have children with autism under the age of 7 – effectively advocated for legislation through intense letter-writing, personal visits to the legislature, and dissemination of accurate information to other parents in the face of unusually difficult circumstances in the state.
Other awardees included:
- Lisa Stanley from South Dakota as “Rookie of the Year”
- Jodi Bauer from New Jersey as “Lawyer of the Year”
- Cari Brown from Colorado as “Expansion Advocate of the Year”
- Georgia Lt. Gov. Casey Cagle as “Executive Champion of the Year”
- The Hawaii Association of Behavior Analysts as “Advocacy Group of the Year”
A recent addition to the Autism Law Summit is a one-day, pre-Summit workshop for lawyers only. The lawyers workshop, which is led by the Autism Speaks Legal Resource Center, brings together attorneys who are interested in or actively litigating issues on behalf of individuals with autism and their families. After the attorneys share strategies amongst each other at the workshop, many of them stay for the entire Summit and add immeasurably to the conversations. In 2015, Summit attendees enjoyed several legal presentations, including Misty Bloom, Esq., with the Behavior Analyst Certification Board; Stuart Spielman, Esq., on Autism Speaks federal legislative efforts, including ABLE and the 21st Century Cures legislation; and Dan Unumb, Esq., Executive Director of the Autism Speaks Legal Resource Center on efforts to enforce existing autism mandates for the benefit of families and also recent activity to secure meaningful autism benefits for the Medicaid population.
The mix of conversations, presentations, and networking at the Autism Law Summit makes for a meaningful experience for attendees. “Honestly, attending the Law Summit was the best choice we have made,” said first-time Summit attendee Michele Robinson, an ABA billing and credentialing specialist.
In addition to Autism Speaks, other sponsors of the Autism Law Summit included Beacon ABA Services, Early Autism Project, Center for Autism and Related Disorders, the Behavior Analyst Certification Board, ABPathfinder, Autism Society of Alabama, and Helper’s Heart.
Space is limited. (Sign-up for the 2nd annual Autism Law Summit Talent Show will take place in late summer.)
If you have questions about the Summit, please contact Mike Wasmer, Director of State Government Affairs, at Michael.email@example.com.
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.