[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
2016: Advocates make big strides for spring session in Washington
June 15, 2016
Autism advocates in Washington, DC and across the country have made big strides on federal legislation. Below are some of the highlights of the spring legislative session.
National Institutes of Health starts 2016 with budget boost
The National Institutes of Health (NIH) heads into 2016 with a budget increase of 6.6 percent after Congress showed renewed commitment to biomedical research. President Obama signed the omnibus appropriations bill that includes $2 billion more than the previous level of $30.1 billion. According to the Washington Post, the budget boost is the “largest single increase in more than a decade.”
In May, the Autism Speaks science and advocacy departments presented a briefing on Capitol Hill for Congressional Members and their staff on “The Human Genome and Precision Medicine: Research Developments in Precision Medicine and Autism.” The event was held in coordination with the Congressional Coalition on Autism Research and Education.
The briefing began with a legislative update by Representative Chris Smith (R-NJ) who co-chairs the caucus with Representative Mike Doyle (D-PA). The event provided information on the latest research developments in precision medicine, which intersect with the legislation that has passed the U.S. House of Representatives, HR 6, the 21st Century Cures Act, and is under consideration through the Senate Health, Education, Labor and Pensions (HELP) committee’s biomedical innovation agenda, as well as the precision medicine initiative.
Federal safety and wandering legislation makes progress
Advocates celebrated when the U.S. Senate Judiciary Committee passed S.2614, safety and wandering legislation known as Kevin and Avonte’s Law, by a vote of 15 to 5. The legislation aims to safeguard individuals who have autism or other conditions that may cause them to wander away from caregivers.
Introduced by Senate Judiciary Committee Chairman Charles Grassley (R-IA) and Senators Chuck Schumer (D-NY) and Thom Tillis (R-NC), the bipartisan bill would ensure that grants from the U.S. Department of Justice can be used by state and local law enforcement agencies and nonprofits for education and training programs to proactively prevent wandering and locate missing individuals with autism and other developmental disabilities.
Kevin and Avonte’s Law is named in honor of two boys with autism who perished after wandering. Nine-year-old Kevin Curtis Wills jumped into Iowa’s Raccoon River near a park and drowned in 2008. Fourteen year-old Avonte Oquendo left his school and drowned in New York City’s East River in 2014.
The bill would reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program and include new provisions to support people with autism.
Congress introduces legislation to expand ABLE
In March, Congress introduced legislation to expand the ABLE program for individuals with autism and other disabilities. The package includes the ABLE to Work Act, the ABLE Financial Planning Act and the ABLE Age Adjustment Act.
Advocates applauded the proposed enhancements which would allow rollovers to and from 529 college savings plans. Other improvements would strengthen the financial tool by allowing individuals with disabilities to deposit income directly into their state-facilitated ABLE accounts. The legislation would also expand eligibility to include individuals who became disabled before age 46 (currently, only individuals who were disabled before age 26 are eligible to open ABLE accounts).
Congressional hearings on employment
In May, the U.S. House Small Business Committee, led by Chairman Steve Chabot, held a hearing on the role that small businesses can play in employing individuals with developmental disabilities: “Help Wanted: Small Business Providing Opportunities for All.”
The hearing included witnesses from Autism Speaks and entrepreneurs across the country: Lisa Goring, executive vice president of programs and services at Autism Speaks; Terri Hogan, owner of Contemporary Cabinetry from East Cincinnati, OH; Rajesh Anandan, co-founder of ULTRA Testing from New York, NY; and Joe Steffy, owner and proprietor of Poppin’ Joe’s Gourmet Kettle Korn from Louisburg, Kansas.
Lisa Goring shared updates on Autism Speaks’ commitment to employment opportunities and a small business-focused employment initiative, Advancing the Role and Impact of Small Businesses in Employing Adults with Autism.
The Bipartisan Disability Caucus also hosted a briefing on the importance of employment for individuals with disabilities with Autism Speaks colleagues from the Association of University Centers on Disabilities (AUCD) and the Department of Labor, highlighting Employment First initiatives around the country that are successfully transitioning individuals with disabilities into competitive integrated employment. Autism Speaks is currently working with governors across the country to expand Employment First policies that focus on the needs of transition-age youth and adults with autism.
Department of Education addresses special education inequality
Autism Speaks applauded the Department of Education for its action to address inequality in special education. The Individuals with Disabilities Education Act (IDEA) aims to provide equity in the identification, placement, and discipline of all students with disabilities. The Department of Education recently released a proposed rule that would help close the disparity gap by providing states with a standard approach to identify schools with significant disproportionality of students of color and other underserved groups of students that are classified for special education, disciplinary practices, and placement in certain educational settings.
The U.S. Secretary of Education, John B. King, Jr., called on Congress to reauthorize the Carl D. Perkins Career and Technical Education Act, which provides funding for the nation’s career and technical education programs in secondary and post-secondary institutions which can be a key to success for individuals with autism preparing for life after secondary school.
To that end, Autism Speaks has continued to advocate for the Perkins Modernization Act to reauthorize the Carl D. Perkins Career and Technical Education Act of 2006 to improve career and technical education for secondary and postsecondary students. Autism Speaks will continue to advocate for improved access to critical educational services, from early intervention to transition services, so all students can reach their full potential.
Planned ABA coverage expansion announced for Federal employees
The Office of Personnel Management, which manages the Federal Employees Health Benefits Program (FEHB), has directed its carriers not to exclude coverage of applied behavior analysis (ABA) starting in 2017. The FEHB program is the nation’s largest employer-sponsored health benefits program, covering 8.2 million federal employees, retirees and dependents. OPM urged its participating providers in 2012 for the first time to include ABA coverage, starting with their 2013 policies. Some did. In following years, OPM directed participating providers to either cover ABA or explain why they were not including the benefit. Gaps in coverage continued. However, the new directive aims to ensure coverage for all under FEHB.
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.