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Autism Speaks Global Autism Public Health Initiative highlighted
WASHINGTON, DC (July24, 2014) -- A House subcommittee heard expert testimony yesterday on the global challenges and advances occurring with autism research and services, with a special focus on the needs of individuals transitioning into adulthood. Michael Rosanoff, Autism Speaks' associate director of public health research, briefed the members on the Global Autism Public Health Initiative launched by Autism Speaks in 2008.
The hearing was held by a subcommittee of the House Foreign Affairs Committee chaired by Rep. Christopher Smith (R-NJ), who is sponsoring the Autism CARES Act to protect federal funding for autism research. Smith has long advocated for a global focus on autism.
“Autism is a growing health problem around the world,” said Smith. “With the ever-rising cost of care, it is imperative that people with autism have the opportunity to learn skills and earn a living so that they can control their own lives as much as possible."
Rosanoff said Autism Speaks launched its Global Initiative with the goal of developing sustainable, broad-reaching, and culturally sensitive programs to expand capacity abroadfor autism research and service delivery. Since 2008, Autism Speaks' international team has loggedmore than one million miles andmet with hundreds of affected individuals, parents, professionals, and government officials to advance the autism initiative.
"There is no single one-size-fits-all solution to improving lives of those touched by autism," Rosanoff told the committee in his written testimony. "Autism is not simply a health issue, but also an education issue, a social welfare issue, and a human rights issue. The most effective strategies are those that are comprehensive and multi-sectorial.
"Approaches do, however, need to be tailor fit to different country contexts," he added. "What may be an effective strategy in one country may simply not be feasible in another."
Autism Speaks and the World Health Organization (WHO) have beendeveloping an intervention guide and training program for community health workers todeliver autism services.The model isnow being used in Ethiopia through an Autism Speaks-funded project.
"As a result of the initial success of this program," Rosanoff said, "the Ministry of Health of Ethiopia has made autism and mental health in general, national priorities. They are currently organizing a conference on the scaling-up of mental health services in the country."
Rosanoff cited employment programs in Bangladesh and Peru that are servingadults with autism and intellectual disabilities. Programs developed in India, South Africa and other African nations are alsoshowing a promising start, he said.
"Worldwide, governments are listening and the commitment is there," Rosanoff said. "However the knowhow and capacity are often not."
The enactment of legislation does not always result in action, he noted.
"Many of the autism laws passed in recent months around the world are well-intentioned, but lack the strategy and resources to implement properly," Rosanoff said. "In some cases, poor execution leads to unsuccessful programs that may actually hurt the chances for future support. More concerning is that hope can turn to helplessness for members of the autism community under these conditions."
Rosanoff concluded with a call for immediate action utilizingavailable modelsthat are working to improve access to services and by promoting community inclusion. "By working together, and learning from one another, we can change the future for all who struggle with autism worldwide," he said.
Bill would allow tax-free savings accounts for people with disabilities
WASHINGTON, DC (July 23, 2014) -- The ABLE Act, which would allow tax-free savings accounts for people with disabilities,was warmly received today by a U.S. Senate committee which heard testimony from supportive witnesses, including Bob D'Amelio, a North Carolina advocate who spoke on behalf of Autism Speaks.
The hearing by the Senate Finance Committee's subcommittee on taxation and IRS oversight, was the first by Congress on the bill, S.313, which was introduced in February 2013. Sponsored by Sen. Robert Casey (D-PA), left the bill has 74 co-sponsors; the House version, HR.647, sponsored by Rep. Ander Crenshaw (R-FL), has 367 co-sponsors.
"No other bill in Congress has this level of bipartisan, bicameral support," said Casey, who chairs the subcommittee. "This level of support is a testament to the hard work of families and other disability advocates, many of whom are present here today.It is also reflects the importance of what the ABLE Act does."
The ABLE Act (Achieving A Better Life Experience) would mirror Section 529 college savings accounts by allowing families and individuals with disabilities to set aside tax-free savings to pay for housing, education, transportation, job support and other costs. Participants would not lose their Medicaid or Social Security benefits.
“The legislation we are considering today is a step towards making the promise of the Declaration of Independence ring true for all of us,” said Sen. Michael Enzi (R-WY), the ranking member of the subcommittee.
D'Amelio and his wife, Christi, live in Charlotte with their three children, including two sons with autism.
"The current section 529 plans fall short for the many individuals with autism and other disabilities who cannot or choose not to go on to college," D'Amelio testified before the committee. "As much as anything else, the ABLE Act is about fairness. If Christi and I can use a college savings account to provide for our daughter Lindsey's future, why can't we use something similar to take care of Nicholas and Christopher?
"I would love to sleep at night knowing that I was doing everything I could to secure the future of my children. My son Christopher is a very smart young man, but he will need a job coach and at some point a residential program," he continued. "Saddling my daughter Lindsey with a big financial burden is not fair when Christi and I can provide for Christopher.Lindsey is already mature beyond her ten years of age. She knows that she will be looking after Christopher and keeping tabs on Nicholas for her entire life."
Sen. Richard Burr (R-NC), right, the lead Senate Republican sponsor of ABLE,said, “It's hard for me to find a reason why anyone would want to get in the way of a bill that allows the parents of a disabled child the opportunity to save their own money for their child's future and to give that child a shot at financial independence.”
Other witnesses included Rep. Cathy McMorris Rogers (R-WA), whose son, Cole, has Down syndrome;SaraWolff, a self-advocate and board member with theNational Down Syndrome Society; and Chase Alston Phillips, a financial advisor from northern Virginia.
"Our outdated laws encourage women and men with disabilities to resign themselves to a life of dependence by spending down their assets rather than saving them for future expenses," said McMorris Rogers."Unless families have the resources to hire an attorney to create a special trust or some other complicated savings vehicle, there is no other option to establish financial security without risking access to critical government programs for individuals with disabilities. And that's just not fair."
Because ABLE is a tax bill, it must be first voted out of the House.