By Autism Speaks President Liz Feld:
For hundreds of autism advocates, last week marked the launch of a 2014 policy agenda that will provide meaningful benefit to the entire autism community. Over 200 volunteer leaders from classrooms, boardrooms, small towns, big cities, and service sectors from across the country convened for three days for the first-ever Autism Speaks Policy & Action Summit in Washington, D.C. Autism is not a partisan issue, and we kicked off the Summit with a reception on Capitol Hill to honor the 114 Members of the Congressional Autism Caucus. Caucus co-founders Chris Smith (R-NJ) and Mike Doyle (D-PA) told the crowd how far we’ve come in raising awareness, while pressing the urgent need for more supports and services for all who need them. At least three more lawmakers joined the bipartisan Caucus during the Summit – Sen. Bob Casey (D-PA), and Reps. Tim Griffin (R-AR) and Kevin Yoder (R-KS).
As a lifelong champion of the healthcare needs of children and families, Senator Tammy Baldwin, (D-WI) addressed the crowd and made a passionate appeal for a national strategy for autism. Senator Baldwin has been an effective leader of the so-called “Women’s Group” in the U.S. Senate and Autism Speaks is so grateful for her support. Later that evening, we were honored to have Congressmen Steve Stivers (R-OH) and Bob Meehan (R-PA) join us, as well as HHS Secretary Kathleen Sebelius.
The Policy & Action Summit was hosted at George Washington University, where we welcomed House Majority Leader Eric Cantor (R-VA) and Senator Bob Menendez (D-NJ) as keynote speakers. Leader Cantor has been a champion of brain research and is the author of the Kids First Research Act which would prioritize federal research funding for pediatric disorders, including autism. Senator Menendez was introduced by his friend, Kerry Magro, who works in the social media department at Autism Speaks and is on the spectrum. The Senator has been a longtime advocate for the autism community, serving as original Senate sponsor of the $690 million reauthorization of the Combating Autism Act in 2011. He is spearheading an initiative to address the range of issues that come with transitioning to adulthood – the AGE-IN Act-- from employment to housing to community integration.
Federal legislative priorities laid out by the advocacy team include re-authorization of the Combating Autism Act, landmark legislation (first enacted under President George W. Bush in 2008 and reauthorized in 2011 by President Obama) set to expire next summer. We are urging passage of the ABLE Act, and improvements to TRICARE. We continued our call for a national strategy to address the range of issues across the lifespan of someone on the spectrum. From increased NIH funding for autism research - to a plan to address the 500,000 young adults who will age out of school-based services over the next decade – we need a national plan.
In addition to presenting our federal legislative priorities, the Autism Speaks advocacy team laid out our 2014 state strategy for insurance reform. Our “Autism Champions” campaign will highlight states targeted for passage of legislation that would provide insurance coverage for autism benefits. Already, 34 states and the District of Columbia have enacted autism insurance reform laws.
Autism Speaks Chief Science Officer, Rob Ring, addressed the audience with news of our latest research initiatives and the “moonshot” potential of our 10k genome project. He renewed our commitment to helping “the whole person” through more research and treatment of medical conditions associated with autism such as GI complications and seizure disorders. We heard from our partners at Google about their work in the technology field to address the needs of the disability community now.
Lisa Goring, who leads our Programs & Services work, shared the results of our National Housing Survey that identified the needs of over 10,000 people who want housing options for themselves or their adult children, living with autism. The housing panel included leaders from across the country, such as Duncan Niederauer, chairman of the NYSE; Patricia Wright, national director, Autism Services for Easter Seals; Anna Hundley, executive director, Autism Treatment Center of Texas; Tom Toronto president, United Way of Bergen County; and Peter Gerhardt, chairman, Scientific Council for the Organization of Autism Research …. In her remarks, Suzanne Wright said, “The results of our national housing survey reflect the needs and hopes of thousands of parents who want options so their adult children can live as independently and safely as possible. We need help to make those dreams and hopes a reality.”
The Summit dinner on Wednesday was an evening to honor our local heroes from around the country who are making a difference on the ground every day. The event included two very special guests, Senators Ed Markey (D-MA) and Al Franken (D-MN). Both have been committed supporters of the autism and broader disability communities. Senator Markey called for a relentless campaign for more research funding “until we find all the answers we need.” Reprising his comedic Stuart Smalley role from Saturday Night Live, Senator Franken said, "You're good enough. You're smart enough. And doggone-it, people like you.” Our keynote address was delivered by Vermont Governor Peter Shumlin whose powerful speech urged advocates to work with the nation’s 50 governors as a way of effecting change.
Thursday morning, we gathered on Capitol Hill for meetings with nearly 40 Members of Congress. Priority issues for discussion included reauthorization of the Combating Autism Act, including greater accountability for research funding. With the staggering rise in autism prevalence, skyrocketing costs to families, and the urgent need for focused research and resources, we pressed for more accountability.
In meetings with House Minority Leader Nancy Pelosi (D-CA), and Senator Tim Scott (R-SC), our co-founder Suzanne Wright said, “Millions of children and adults have made progress over the last few years thanks to the Combating Autism Act. We can’t go backwards.”
Co-founder Bob Wright, and AS Board member and “dad” Billy Mann, appealed to Speaker John Boehner (R-OH) to move forward with passage of the ABLE Act which would provide tax free medical savings accounts for families with people with disabilities. A bipartisan majority of House members, 291, have signed on as cosponsors. “ABLE will benefit families immediately. Parents of children with special needs should have the same tax benefits as parents who use a 529 savings account to save for college. It’s all about fairness.”
By the time we wrapped up on Thursday, we had delivered a package of 150,000 petitions to all 535 Members of Congress, calling for a national strategy for autism. Our elected leaders must increase funding for research, work towards easing the burden of costs associated with treatments and services, and give parents and caregivers the peace-of-mind that their loved ones with autism will be supported later in life. It was such an inspiring experience to rally together at the Summit and call on Congress to take action for a national strategy that will help our families, friends and neighbors who are affected by autism.
Above all, the Summit was an opportunity to harness the individual ideas, successes, and goals of hundreds of autism leaders around the country into one collective force. From Anna Bullard, champion of Ava’s Law in Georgia, to Jim & Lisa Price, founders of Jack’s Place for Autism in Detroit, to Mark Olson, founder of LTO Ventures in Nevada, we heard what has been done, what can be done, and what must be done.