[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
A Vision for New Jersey’s Autism Community
August 25, 2011
This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.
As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)
Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.
Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum
Creating a New World
Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.
So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”
Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.
One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.
Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.
The Transition Tool Kit
Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.
Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.
We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.
To read full article, please visit NJ Spotlight.
The Autism Community Is Not The Autistic Community
More With Peter Bell
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.