By Tracy Record
West Seattle Blog editor

“Autism is treatable, and health insurance should cover that treatment.”

That’s how Allison Dennis summarizes her quest, which — on the night we spoke in her Upper Fauntleroy living room earlier this week — had just taken her to Olympia, to try to change a local legislator’s mind.

Allison’s preschooler son Jack is autistic, diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, in semi-short).

He is getting therapy – which can make a huge difference for those with autism – but it comes at a significant cost. Allison and other parents and advocates are trying to get the state to change the rules about which treatments insurance companies must cover and when, but they are facing an uphill fight.

One of West Seattle’s two state House members, Rep. Eileen Cody, chairs the House Health Care and Wellness Committee. That’s who Allison and Arzu Forough from Washington Autism Advocacy had an audience with last Monday, “fairly brief,” Allison noted.

WAA is campaigning for “Shayan’s Law,” House Bill 1210, which has yet to be scheduled for a hearing in Rep. Cody’s committee (see its latest status here).

Rep. Cody is co-sponsoring HB 1412 (which has moved on to Health and Human Services Appropriations), a different bill which is not autism-specific and which Allison says would not provide the coverage level that families need.

She says one major difference is that if HB 1412 becomes law, families would not be entitled to coverage for services that their children are getting at school, but she points out that occupational therapy and speech therapy offered in short sessions, often in group settings, at school, is a world away from what autistic children need in order to truly make make progress. She also notes that HB 1412 includes caps, and would not take effect until 2011, while HB 1210 would be effective later this year; WAA’s latest side-by-side comparison of the two bills can be read here.

The best time for progress to be made, she says, is in early childhood. Her son Jack is almost five. “Cognitively, he’s fully functioning,” she says, “but he has sensory integration issues, emotional regulation issues, fine- and gross-motor differences … we’ve been very fortunate in being able to get intervention early.”

And that’s only because they paid for it themselves, and because they received an early diagnosis. “We knew something was wrong,” Allison recalled. “But we would hear (from doctors), ‘oh, everybody develops at a different pace’ … Finally, he was evaluated at Children’s Hospital, and they made a referral, and we wound up in a study at the UW.” That study does not include treatment or therapy, but it does include an annual evaluation to see what progress Jack is making. Allison recalls with relief that he began to speak just after his 3rd birthday.

Right now, he is in intensive therapy to keep that progress going – 25 hours of Applied Behavior Analysis a week at home, along with occupational, speech, and music therapy (the latter provided by West Seattle’s Kathleen Voss), and he is in a developmental preschool at Alki, where he gets some additional speech and occupational therapy.

But just relying on what can be provided nominally at school would not be nearly enough, she says, and so she and other autism advocates continue to fight for HB 1210, which is summarized in this page on the Washington Autism Advocacy site.

Among the other co-sponsors of what WAA considers the inferior bill, HB 1412, is West Seattle’s other state House representative, Sharon Nelson, who sent Allison and other letter-writers a note that read in part:

I am a cosponsor of House Bill 1412, which expands the existing mandate that insurance companies cover neurodevelopmental therapies. I am optimistic that this bill will make a difference both for families dealing with autism and for others who could benefit from neurodevelopmental therapies. I am not a cosponsor of House Bill 1210, which establishes a new mandate for autism-related therapies. While I agree with the bill’s goals, I am concerned that they may not something the state can afford during our current severe budget crisis, during which we will have to make many deep cuts to other important health programs.

As a mother, I understand that autism is a difficult challenge, both for the children who are born with it and their families who care for them. I look forward to passing more aggressive changes in support of families dealing with autism during future years when we do not face such critical budget situations.

Here’s part of what Allison wrote back to Rep. Nelson:

So much talk about costs, but what of the human side of the issue? I have a beautiful 5 year old son, smart and loving. His dys-regulated sensory system and resultant emotional dys-regulation get in the way of his ability to learn effectively in group settings. His fine and gross motor deficits make play a challenge rather than a joy. The weekly cost of his therapy – ABA, Speech, OT – to correct these issues (as well as communication difficulties, social deficits, etc.) at a time in his life when it is still possible to affect such an outcome is staggering and is not covered by our insurance. I have attached a picture of him, so that you may put a face to my personal request for your support.

You mention that you, “look forward to passing more aggressive changes in support of families dealing with autism during future years when we do not face such critical budget situations” and I argue that my son and the other 895 children diagnosed with autism in 2008 in Washington do not have the luxury of waiting. The fiscal well being of the state, in the long run, does not either. HB 1412’s less than adequate autism components (less aggressive supports for autism, as implied by your words) would not go into effect until January, 2011. HB 1210 would be in effect 90 days after passage – July, 2009 – and would be fully adequate. Autism is treatable and insurance should cover the treatment – fully.

Allison says she and other advocates understand the intense budget concerns, but consider this to be ultimately a case of penny wisdom/pound foolishness, as early intervention and intensive treatment could save the state hundreds of thousands of dollars per patient in later years.

One study quoted on the Washington Autism Advocacy website says that an untreated patient with autism can lead to a lifetime public cost of more than $3 million; WAA also says our state leads the nation in institutionalization of children with autism and “related disabilities,” with costs as great as a quarter-million dollars per child per year.

West Seattle’s third state legislator, State Sen. Joe McDermott, has provided Allison and other advocates with more hope; he is a co-sponsor of the Senate version of the bill, SB 5203 (check its status here), which had a hearing in the Senate Health and Long-Term Care Committee in late January.

Allison says that if a vote can at least be scheduled in that Senate committee — even if Rep. Cody’s committee declines to schedule a hearing — that keeps its chances alive.

But she also knows the timing is going against them — of the meeting with Rep. Cody, she says, it was made clear that this all comes down to the current state-budget crisis, and that Rep. Cody doesn’t believe any bill with a cost will make it through, maybe not even the one she, Rep. Nelson, and others are backing.

If you want to contact West Seattle’s legislators on this issue (or anything else), their websites and contact information can all be reached from this starting page.

Allison will continue to work to get the word out until the bill’s fate is clear: “I’m just so passionate, because I love my child so much.”

And then, she has to end our conversation – to interview a new therapist who has arrived for an in-home interview; a therapist that her family will pay for out of their own pocket because until and unless the time comes that they just can’t pay any more, or that insurance companies help, there is no other choice, if her son is to have a chance at a more-normal life.

From the State Legislature’s website, full information on HB1210 (including its “fiscal note” – potential costs to the state) – is here; full information on HB 1412 is here; full information on SB 5203 is here.