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Groups Want Federal Autism Dollars Reallocated

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With the nation’s primary autism legislation set to expire soon, some disability advocates are pressing for major changes in the federal government’s approach to the developmental disorder.

In a letter this week to key members of Congress, 18 national organizations are asking for a greater emphasis on services and the needs of adults with autism when lawmakers reauthorize legislation known as the Combating Autism Act.

“Congress should make common-sense changes that will ensure that federal funds are better used to benefit the community that this legislation is designed to serve,” wrote the Autistic Self Advocacy Network, the Autism Society of America, the American Association of People with Disabilities, TASH, the National Disability Rights Network and other groups in the letter.

Currently, the Combating Autism Act allots $231 million annually for a wide range of autism initiatives including research, prevalence tracking, education, early identification and intervention programs. But that money is set to run out at the end of September unless Congress acts to renew the legislation.

In their letter to the law’s primary backers — U.S. Sen. Robert Menendez, D-N.J., Rep. Chris Smith, R-N.J., and Rep. Mike Doyle, D-Pa. — the advocacy groups said they’d like to see funding from the law reallocated. At present, a significant chunk goes toward underwriting research through the National Institutes of Health of which only 2.4 percent is spent on researching services for autism and even less — 1.5 percent — funds projects focused on adults with the developmental disorder, they indicated.

The groups also said they’d like the law renamed to remove the negative connotation they see in the word “combating” and want to see changes at the Interagency Autism Coordinating Committee, a federal advisory panel comprised of government officials and members of the autism community. Specifically, in the letter advocates told lawmakers that the IACC should include greater representation from people with autism and the committee ought to be reorganized to address more than medical research.

“Autistic people do not like being excluded from a conversation that at the end of the day is about us,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. “(The Combating Autism Act) really needs to be about supporting autistic people.”

Stuart Spielman of Autism Speaks, which has long-championed the bill in its current form, acknowledged that there is more work to be done, citing areas like transition and employment that merit greater attention, but insisted that all components of the current law are “vital.”

“We want to build on the successes of the Combating Autism Act,” said Spielman, the group’s senior policy advisor and counsel. “There’s a lot more that needs to be done but if you look at where things were at years ago, we have made progress.”

Menendez, who has traditionally been the measure’s chief Senate sponsor, is open to some reforms of the legislation which originated in 2006 but given that this is a reauthorization of an existing law, there are limits to how much change is realistic, an aide to the senator told Disability Scoop.

Lawmakers are looking to introduce a proposal for reauthorization in the coming weeks and are aiming for approval by August, the aide said.

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Comments (11 Responses)

  1. Whitney says:

    I can see that research is needed for autism but most of these projects are overlapping and poorly set up. I am curious what violence video games effects are doing to children in general. Until baseline is establish for children both autistic and NT then it can be assessed to what affect it most likely have on child. Video games just autistics who are negatively affected does not fly. Plus the last children were ranging 6 to 18 years with just 300 kids is too limiting. Get rid of this nonsense research and put money in to training and awareness for adults with autism or things that can have affect the quality of life for people with autism. Put in those programs where Autistics can get the training they need for employment will help the children down the road. Researching to prevalence and how to cure it can not be the only objectives. For every dollar goes in to curing autism a dollar must go into initiatives that improves the quality of life for people with autism.

  2. Nelsinia Wroblewski says:

    About time. I am totally in pro ASAN’s position.

  3. Wayne Clarke says:

    I am writing on behalf of My Time Inc a parent support center in Brooklyn NY. I am all for research but while the research is being conducted, more help is needed for the parents. The child will get the services 95 percent of the time. Who is taking care of the parent?.

  4. Sonja Luchini says:

    Ironic that the one organization in favor of keeping the law as it stands has no credibility with the population of people with autism they claim they are helping. Autism Speaks does NOT speak for those who would best know what is needed in this bill. John Elder Robison resigned from their board due to their narrow-minded perception of the public need Autism Speeks organization seems only interested in finding a “cure” to a “problem” which isn’t helpful for those many, many individuals who need services now.

    My son does not appreciate their organization’s mind-set that he is in need of “fixing” or ‘curing”. He does not see himself as a “problem” and feels he is fine as he is. Though different in how he might see the world, he attends school, gets good grades and does not think he has a disease that needs “curing”. As Robison stated in his resignation letter:
    “If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion.”

    The people we need to hear from are those who would best be served by this bill, not by a bloated organization that takes funds away from cities and towns with their “fundraising walks” that could’ve been better utilized locally. They suck all the energy (and fundraising $$) out of the room, leaving little for those organizations that truly help the individuals now who need it.

  5. R. Larkin Taylor-Parker says:

    This is what the autistic community and growing numbers of parents want. We were born this way. We have always been here. In my family, we are ‘normal’ enough to get by in the workforce without help, so we have good lives. I am pursuing my dreams, finishing undergraduate this spring and starting another degree in the fall. I want that for people who need some supports. This money could help. Wasting it on a scientifically implausible cure ignores and undercuts the children, families, and adults who are already here, many in dire poverty and great need.

  6. Jennie says:

    Since there is such great insistence that there is nothing wrong with the high functioning self-advocate types, there should be no funding wasted on them. If they are ok why the need? Give funds to those with severe autism and their struggling famillies. Stop the whiny whimpering about feeling insulted and save the funds for those who are struggling and seek relief.

  7. Dadvocate says:

    Unsurprising that the anti-science wing wants to allocate funds they never worked to secure away from research. This bill was never about services and supports, though critical work needs to be done there too, especially on rolling back the anti choice one size fits all independent living mandates from HHS.

  8. vmgillen says:

    Ah yes: same old same old, thanks to the APA’s creation of a “Spectrum.”

    1. Adopt the Americans with Disabilities Act standard: you aren’t disabled unless you have a physical or mental disability which substantially limits one or more major life activities, a record of the impairment, or being regarded as having the impairment.

    2. The young men I know say they’re sorry, and sometimes cry, after meltdowns – and they mean it. SLuchini, your son doesn’t want to change anything, fine. That is not universal.

    I submit a different diagnostic standard is needed. I further submit that should be done before any more money is wasted – yes, wasted – because there is no standard for population. Conflation tends to make all results suspect.

    Finally, I challenge people to read the Act before sounding off. It probably will be reauthorized – and needs specific challenges and changes, not statements about ‘losing identity’. For heaven’s sake, elementary school changes identity! (reducto ab absurdam).

  9. Whitney says:

    The research is overlapping and does nothing for quality of life for people with autism. I see so far research in areas that about how to get a grant for degree in psychology than actual effective research in how make people with autism live life better.

    So far I seen in research here on disabilities had been about behavior of teenagers and due to that age are confrontational. HELLO THEY are teenagers and it would be more abnormal for them not to be confrontational. This does not matter if they are part of ASD or NT.

    Next is about Video games and yes there are game out there have negative impact on children. Okay figure out how some video games have negative impact on society general not just people with autism. Until you have a baseline for impact on NTs then you can move ASD.

    Oh next the favorite of the top ten studies lets lobotomize people with autism for the great Autism Speaks so they can find their cure for Autism.

    BTW the greatest thing People with Autism are great with computers oh we have studies that prove this. Now here is a study that shows that people with autism can contribute to society now funds are needed to train them. Autistics are great with details and computer programming requires it and studies prove that. Now we are not implementing the facts of the studies to improve quality of life for people with autism and their families.

    There been enough studies and we know what works and what doesn’t we don’t need research to rehash the same results from previous and overlapping research.

  10. Thomas C. Wood says:

    As a member of ASAN, Ari Ne’eman’s organization, I want to see the funding shifted to helping us live in the community and not getting tied-up in going after cures, which are dubious at best. I am ok just the way I was born, having both Autism “and” Cerebral Palsy. At age 56, I have had to live my entire life up to now without any supports, and honestly, as I “age” as a senior citizen in the Autism & Cerebral Palsy Disability Communities here in Southern New Hampshire, I need more support to continue to “age in place” here in my own Town of Salem, New Hampshire.

  11. Whitney says:

    It is a taxation without representation. Autism Speaks has no one speaking for autistics instead it taking path of eugenics. If a group wants the money to spend on promoting training for autism in fields they excel at to improve their lives. For Autism Speaks does not allow our voice in it’s group nor allow any input from us. So we also have no say in what research being done or how money is being spent for this research. So in essence we have no representation in decision making and what the people with autism in Autism Speaks. Many with Autism think and feel Autism Speaks no longer have the best interests for the group it is suppose represents. Autism Speaks has shown path of eugenics where it allows hunt us down like mutants in X-men. People with Autism are the Mutants and Autism Speaks are the Sentinels. Sentinels are hunting people who are mutants to extinction and that what Autism Speak will do to us.

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