Peter H. Bell, executive vice president of Autism Speaks, noted that the act provides important benefits, not the least of which is that children can stay on their parents' health plans until they turn 26, and cannot be denied coverage because of their pre-existing condition.
Autism Speaks successfully lobbied to insert language in the final bill requiring that newly created state health care exchanges cover behavioral health treatment, a reference to a type of therapy called assisted behavioral analysis. Alex benefits from the therapy.
"That is a very important provision for us," Bell said. "If the act gets repealed, the provision is no longer there. Fewer families would be able to access those benefits."
In California, state Senate President Pro Tem Darrell Steinberg last year carried a bill requiring that private health insurance companies provide assisted behavioral analysis beginning in July. That measure assumes that in 2014, the feds will start providing subsidies for the treatment.
"Funding is at the core of our services and program needs for our children," said Rick Rollens, the former secretary of the Senate who lobbies on autism-related issues in Sacramento and became immersed in the issue after his son was diagnosed 20 years ago. "We'd be back to square one" if the Affordable Care Act unravels.An earlier article in the same paper provided additional detail. Emken lobbied to include autism in the bill even though she disagreed with its overall approach:
Emken said that while she disagrees with the overall approach of the health care overhaul, the effort to include the language was important for her and the organization because autism is "perfect example of a catastrophic medical event" that some insurance companies will not cover.
"What we were doing is, as everyone was doing when you have a Democratically-controlled Senate, House and president, everyone, Democrats and Republicans are all working on a piece of legislation that's on the table," she said during a Sacramento press availability Tuesday. "That's how it's done. You don't just walk away if you don't like how things are going. You continue to work on it."
Emken said the reference to autism did not make it into the bill and regulatory language emerging on the issue is "extremely nebulous." She said that outcome reinforced her opposition to the law.
"The issues are so long and vast and broad with Obamacare," she said, "I really believe the only solution is to repeal it, but I do believe in replacing it with real health care reform and real health insurance reform."