Representatives Chris Smith (R-NJ), Maxine Waters (D-CA), and Mike Doyle (D-PA) reintroduced Kevin and Avonte’s Law (H.R. 4221) on November 2. This bipartisan legislation reauthorizes an existing federal program that assists in locating persons with dementia who wander from safe environments and expands the program to include new support for children with developmental disabilities, including autism spectrum disorder (ASD). It allows Justice Department grants to be used to develop training and emergency protocols, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander because of their condition. According to recent data, 27% of children with ASD, intellectual disability, and/or developmental delay are reported to wander from safe settings each year. In 2016, the House and the Senate both approved Kevin and Avonte’s Law. However, last minute changes attempting to address concerns over privacy and cost offsets required the legislation to return to the Senate. The Congress ended before another vote was held. The Arc supports this legislation and appreciates that the problematic provisions are not included in the new bill.
After being amended and passed by the House of Representatives on December 8, Kevin and Avonte’s Law (H.R. 4919), stalled in the Senate. This bill would provide grant funds to state and local law enforcement agencies and nonprofit organizations for education, training, and technology to help prevent and reduce the harm from wandering (or “elopement”). The Arc dropped its support and now opposes the bill after two last minute changes were made: 1) A “pay for” from the Department of Justice’s Byrne Criminal Justice Innovation Program was added to cover the estimated $7 million cost over a five year period, and 2) language was added on the allowable uses of tracking device data that raises civil rights concerns. The measure would need to be reintroduced in the 115th Congress that begins in January.
The Government Accountability Office (GAO) released a report, “Youth with Autism: Roundtable Views of Services Needed During the Transition into Adulthood.” GAO studied (1) the services and supports transitioning youth with ASD need to attain their goals for adulthood, (2) the characteristics of these services and supports, and (3) how youth with ASD can be fully integrated into society. To address these objectives, GAO convened a roundtable discussion including adults with ASD, service providers, researchers, and parents of youth with ASD. Among these panelists was The Arc’s Board member, Dena Gassner. The panel described the services and supports that youth with ASD may need to help them achieve five goals for adulthood: postsecondary education; employment; maximizing independent living; health and safety; and maximizing community integration.
The Senate passed S. 2614, Kevin and Avonte’s Law, by unanimous consent on July 14. This bill, sponsored by Senators Charles E. Grassley (R-IA) and Charles E. Schumer (D-NY), would provide grant funds to state and local law enforcement agencies and nonprofit organizations for education, training, and technology to help prevent and reduce the harm from wandering (or “elopement”). The Arc supports Kevin and Avonte’s Law and encourages our members to thank their Senators and reach out to their Representative about the House bill, H.R. 4919, during the long summer recess. Click here for more information.
The federal Interagency Autism Coordinating Committee (IACC) that was reauthorized by the Autism CARES Act of 2014 is looking for comments from people with autism, family members, service providers, advocates and other interested parties as it gears up for its 2016 update. Comments should be related to the seven key topics traditionally addressed by the panel: 1) screening and diagnosis, 2) underlying biology of autism, 3) risk factors, 4) treatments and interventions, 5) services, 6) lifespan issues, and 7) surveillance and infrastructure. Click here to submit comments by the July 29 deadline.
The federal Interagency Autism Coordinating Committee (IACC) released its Research Portfolio Analysis Report for 2011-2012. The report tracks funding and trends for research-related projects by the IACC’s seven strategic objectives: screening and diagnosis, biology, risk factors, treatments and interventions, services, lifespan issues, and infrastructure and surveillance. The report found that combined federal and private investment in autism spectrum disorder research decreased from 2010 ($348.6 million) to 2011 ($299.9 million) and then increased in 2012 ($331.9 million). Proportionately, most autism research funding — 30 percent in 2012 — went toward studies focusing of the biology of the disorder, followed by research on risk factors and treatments and interventions. At the bottom end of the scale are spending on research looking at services (7%) and lifespan issues (1%) in 2012, both of which decreased from the prior year.
On April 14, the Senate Judiciary Committee advanced Kevin and Avonte’s Law of 2016 (S. 2614), passing the bill out of committee by a vote of 15 to 5. The measure, sponsored by Senators Charles Grassley (R-IA), Charles Schumer (D-NY), and Thom Tillis (R-NC), adds children with autism spectrum disorders and other developmental disabilities to an existing program to provide education, training, and technology to help prevent and reduce the harm from wandering. On April 13, Rep. Christopher Smith (R-NJ) introduced Kevin and Avonte’s Law in the House (H.R. 4919).
The U.S. Office of Personnel Management (OPM) announced that all health plans within the Federal Employees Health Benefits Program – which covers federal employees, retirees and their dependents – must include ABA therapy starting next year. “OPM has now determined that appropriate coverage of ABA treatment by all plans/options is necessary,” according to a letter sent to insurance carriers. “Therefore, for the 2017 plan year, carriers may no longer exclude ABA for the treatment of autism spectrum disorder (ASD). We expect all carriers to offer clinically appropriate and medically necessary treatment for children diagnosed with ASD,” the letter states. This directive is a victory for advocates who have fought for years for ABA to be recognized as an evidence-based treatment by insurers. To date, legislation has been passed in 43 states requiring at least some insurance plans to cover ABA
Kevin and Avonte’s Law (S. 2614) was introduced by Senators Chuck Grassley (R-IA), Chuck Schumer (D-NY), and Thom Tillis (R-NC) on March 1. This legislation reauthorizes an existing program designed to assist in locating persons with dementia who wander from safe environments and it adds new support for children with developmental disabilities, including ASD. It allows Justice Department grants to be used to develop training and emergency protocols, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander because of their condition. The Arc supports this legislation as it seeks to prevent and reduce the harm from wandering (or “elopement”) by the 27% of children with developmental disabilities who are reported to wander from safe settings each year. Read Senator Grassley’s statement for the Congressional Record here.
Last week, the U.S. Preventive Services Task Force (USPSTF) issued a final recommendation statement on “Screening for Autism Spectrum Disorder in Young Children.” The USPTF concluded that evidence is insufficient to recommend that all children be screened for autism, stating that “…the current evidence is insufficient to assess the balance of benefits and harms of screening for autism spectrum disorder (ASD) in young children for whom no concerns of ASD have been raised by their parents or a clinician.” The USPSTF is an independent, volunteer panel of national experts in prevention and evidence-based medicine convened by the Agency for Healthcare Research and Quality. The Arc and several other disability organizations submitted comments last year on the USPSTF’s draft recommendation. We expressed support for guidelines from the American Academy of Pediatrics that call for continuous developmental surveillance and for specific autism screening at 18 months, 24 months, and whenever a parent or provider expresses concern. The Arc is concerned that the USPSTF final recommendation statement could be used by insurance companies to discontinue reimbursement to physicians for screening work, despite the availability of free brief evidence-based screening tools. Visit the USPSTF web site to view its final recommendation.