From OPB.com, August 20 2008

Oregon’s growing number of cases of autism, and unreliable treatment options have a group of lawmakers and state officials searching for answers this week.

Oregon has at least the third highest incidence of Autism Spectrum Disorder, or ASD, nationally.

Frustration. That’s probably the best word to describe the overwhelming feeling from parents and advocates who showed up to an autism town hall in North Portland Tuesday night.

Ellen Dutch is the mother of a 17-year-old boy with autism. She says lately, she doesn’t feel comfortable leaving him alone with other people.

Dutch mentioned that to her insurance company, and was told that her son could be admitted to a facility, only if he was suicidal.

Ellen Dutch: “If he is not suicidal, but he’s a dangerous to others, you can call the police. Those are my two options. Given what has happened in Portland, with the Portland Police, I certainly did not want to depend on that option. And when I called Multnomah County services, I got the same answer.”

Dutch’s frustration came as no surprise to Eugene-area representative, Chris Edwards. He’s the chair of the Autism Spectrum Disorder Workgroup, and the father of a six-year-old autistic boy.

Chris Edwards: “As a parent of a son with autism, I know how frustrated I’ve been at the lack of a coordinated state response to this epidemic.”

One in 89 children in Oregon is diagnosed with autism. That number is even higher around Eugene.

Edwards opened the town hall by recounting his family’s struggles and eventual successes, in finding services for his son in Eugene.

The upbeat ending to Edwards’ story, though, rubbed some parents like Lyn Osburn the wrong way . She says a court case more than a decade ago forced the state to improve care. But Osburn says efforts since then haven’t done the job.

Lyn Osburn: “The same vague ideas, the same vague measurements, the same vague recommendations as 1996. I’m really disgusted, because to me, these people are part of the problem here.”

Republican state representative and work group member, Linda Flores says she intends to introduce a bill to state lawmakers next year.

Linda Flores: “Whatever we’re doing now is preparation for work that we come into the legislative session prepared to do. Rather than doing a study, for the sake of doing a study, and setting it on a shelf and not paying attention to it.”

Flores admits she doesn’t have much direct experience with autism. Unfamiliarity like that fueled criticism from advocates like Dora Raymaker. She’s an adult with autism, who spoke to the work group through a voice program on her laptop computer.

Dora Raymaker: “It is absolutely critical both in maintaining quality and from a human ethics’ standpoint for any organization that claims to serve a particular segment of the population, to have members of that segment of the population at the policy level of that organization. You must include actual autistic individuals on your committee moving forward.”

Others insisted that not only should adults with autism be on the committee, but they should be emphasized in the recommendations, as well.

People testified that the current draft prioritizes services in schools, for instance. But overall, parents like Myrsa Montoya-Brown called for stronger recommendations. In particular, she disagreed with a proposal to “explore” health insurance mandates.

Myrsa Montoya-Brown: “All it says is ‘explore specific health insurance coverage’ – I think it needs to say ‘develop and pass insurance legislation that covers physician-directed intensive treatments for ASD.”

Representative Edwards says he supports tough insurance laws, but says they’re complicated, and hard to create without loopholes. As these recommendations head toward bill form over the next few months, the question of insurance may prove controversial.

On one side, you’ve got the powerful insurance lobby. On the other, parents like Ellen Dutch, whose insurance company directed her to the police for help with her son.

Ellen Dutch: “And I said ‘what would you do if you had a child with this disability?’ Their response was ‘I would move. I would leave the state’.”

Dutch says she has had friends with autistic children leave the state – and she intends to do the same, if conditions don’t improve.

The series of public meetings on autism continues Wednesday night, in Eugene.