Bad Bill Rising: House, Senate Primed to Screw Autism Families Once Again
By Dan Olmsted
Sources tell us that both chambers of the United States Congress will pass similar versions of the newly named but basically unchanged Autism CARES act this week, confirming once again that the federal government couldn’t care less about the autism epidemic engulfing the nation.
The House was marking up the bill Tuesday. It was expected to pass through a suspension-of-the-rules vote as early as the end of the day. In the Senate, the HELP committee will take up the bill Wednesday, and it's expected to sail through the full chamber by unanimous consent. While there may be some ironing out of differences between the two chambers, a final bill is expected to move to the president’s desk with no further chance of intercepting it. (See end of story for appeal to HELP committee chair Tom Harkin [(202) 224 3254] asking him to delay vote.)
“Autism families are getting f----d again. Autism Speaks should be ashamed of themselves,” said one person who has been attempting to head off the legislation AS and federal bureaucrats have been pushing for months. Autism families will let out a “primal scream” when they realize it’s happened again, he added.
The new law is looming despite efforts by outgunned and underfunded autism advocates to add more environmental research and targeted funding to the bill. They say the process was hijacked by special interest and disability advocacy groups and that, once again, Autism Speaks big-footed the process with its lobbying. The result: Status quo ante -- and inadequate.
The Autism Policy Reform Coalition (APRC), representing more than 100,000 families nationwide, had pushed for significant structural changes, centering on the Interagency Autism Coordinating Committee set up by the act. They believe it has been misguided and inept.
“Right now, the IACC, which is ‘in charge’ of federal coordination, is not functioning,” said APRC’s Katie Weisman. "It holds a handful of meetings a year, it has no authority to actually allocate any funds, and it does not have the resources to implement anything.”
The reform coalition -- made up of the National Autism Association, Generation Rescue, Talk About Curing Autism, Autism Is Medical, D.A.I.R. Foundation, SafeMinds and Thinking Moms Revolution -- was not asking for additional funding, but rather accountability and reallocation of existing dollars.
Congressman Bill Posey, R-Fla., called on Congress to reform the act after listening to Tom Insel, head of the IACC and the National Institute of Mental Health, testify before Congress last month.
“The failures of the federal response to autism in general, and of the IACC in particular, is rooted in structural weaknesses resulting from bureaucratic organization and execution. These things can and should be reformed as we reauthorize CAA.”
He pointed to proposals by the APRC coalition: “These organizations represent those living with autism every day. The framework they are suggesting appears to provide logical solutions and I think we as legislators owe it to the autism community to incorporate some of their ideas for CAA reform so that we have a better opportunity to bring results that work for families.
“I fear that in the rush to pass ‘a bill’ we are missing an opportunity to pass ‘the right bill’ that produces results. I hope my colleagues on both sides of the aisle will work with me to make the time to do so.”
Autism Action Network issued an appeal Tuesday afternoon asking for more time: "The text of the new Combating Autism Act, now given the ridiculous new name of Autism CARES Act, was only released last Friday. Yet Congress is rushing to vote on locking in the current text, no hearings, no time for public review, no time for anyone but insiders to have any input.
The gov't doesn't care about autism. Heck, Obama is letting in thousands of kids with TB and diphtheria. It's always about money and influence.
Posted by: Jerry | June 26, 2014 at 11:06 PM
the bill was totally highjacked by the neurodiversity movement
Posted by: jonathan | June 24, 2014 at 10:13 PM
That's right, Bob. They are getting lots and lots of phone calls, likely because there are lots and lots of us making them.
Posted by: Not an MD | June 24, 2014 at 05:51 PM
Called the Senators listed on "thinking moms" .. and .. was encouraged to hear two different Senate staffers .. immediately acknowledge that others have called for the Senator to place a "hold on S.2449"
Power to the people ..
Posted by: Bob Moffitt | June 24, 2014 at 05:06 PM
Posted by: Zoey O'Toole | June 24, 2014 at 03:30 PM