Key Action Items:
- Contact your legislators – again, weekly – to ask for support or updates on SB555 and HB2214
- Provide me with written comments on your experience with treatment of older children (teenagers) and adults with autism, and on use of line therapists or paraprofessionals, so I can help explain the importance to the legislature
- Contact the Autism Commission to ask them to endorse SB555 and HB2214
- Save the date – let’s have an advocacy day in Salem on March 31st; we’ll ask the Autism Commission to support Autism Health Insurance Reform, and meet with individual legislators
See details, at bottom.
On Tuesday, Sen. Edwards led a roundtable discussion about Autism Health Insurance Reform with representatives from the Insurance Industry. All of the major Oregon insurance companies were represented, including Health Net, Kaiser, Lifewise, ODS, PacificSource, Providence, and Regence.
The legislature was represented by Sen. Edwards (lead sponsor of SB555); Sen. Kruse (vice-chair of the Senate Health Care committee); and legislative aides to Rep. Buckley and Rep. Greenlick. I was present as a parent of children with autism, and Kathryn Weit was there on behalf of the Oregon Council for Developmental Disabilities.
Most of the insurance companies did come prepared this time with useful feedback: while I didn’t agree with all of their conclusions or recommendations, we have clearly made substantial progress since 2009, when Kaiser sent a young rock musician with a BA in Political Science and no medical credentials of any kind to give its’ “expert” testimony that no one with autism needed anything more than a referral to Early Intervention and a little speech or occupational therapy.
Regence / Blue Cross stated that “there is sufficient evidence that children between ages 3 and 11 are helped (by ABA) – we’re not arguing about that…. It works in younger children – it really does make a difference in their lives.” They also discussed the need for certification of ABA providers, and expressed support for BACB certification (as addressed in SB555 / HB2214), but indicated the need for some sort of state registration for behavior analysts (which we’re working on).
Providence stated its’ recognition of the importance of providing better health care services for individuals with autism, but said that there was a lively debate within Providence about what care for individuals with autism is appropriate and evidence-based; since this is still underway, he didn’t provide any specific guidance about the range of options being debated within Providence. He stressed the need to balance treatment needs vs. cost, but didn’t provide any specifics.
ODS identified three concerns. The first was the need for consumer protection – they said that BCBA certification was okay for ABA providers, but that we needed at least a criminal background check for line therapists. They also expressed concern about the way that utilization review was managed in the bill, which allows review only once per 12 months and prohibits other forms of utilization controls (such as arbitrary limits on number or duration of visits). Finally, they pointed out that if we attempted to control costs by imposing an annual spending cap on autism services (which we haven’t done), then this provision would be illegal under the Federal Mental Health Parity law. (The current bill doesn’t include annual spending caps, for exactly this reason).
PacificSource had already announced its’ support for SB555 in the February 28 hearing – for a straightforward reason: they are under a court order to cover ABA. For them, this bill isn’t a mandate – its’ an opportunity to help undo the court ruling against them. They provided a model bill of their own, which would require coverage of autism treatments including ABA, and provide for recognition of ABA providers (a positive step that the court didn’t order) – but would have numerous other significant limitations, such as removal of autism from Oregon’s Mental Health Parity Law; severe annual dollar caps; and age limits.
Kaiser complained that the bill didn’t exactly 100% match the Autism Commission’s recommendations, and suggested – with evident disappointment – that we may have to wait another couple of years now given the short amount of time remaining in the legislative calendar to revise it to comply precisely with the commission’s report. This was somewhat ironic, given that a Kaiser executive served as Vice Chair of the Autism Commission; was largely responsible for the Leadership Team’s decision to delay launching the commission’s Insurance Committee by 12 months; and frequently informed those of us on the Insurance Committee that the commission wouldn’t be submitting an insurance bill – it would only be giving advice to the legislature about things to consider when writing one. The commission has since formally endorsed other bills, but the Leadership Team never asked the full commission to decide whether to endorse the Autism Health Insurance Reform bill.
I reached out to the Autism Commission’s Leadership Team (through its’ staff) in January of this year to talk about how we could amend SB555 to match the commission’s recommendations – and the current, amended version reflects all of the input that I received. At no point did the Autism Commission propose any additional changes or express any concern about the compatibility with its’ recommendations. Despite my service as a member of the Insurance subcommittee, and my regular contact with the commission, I learned about the commission’s decision not to endorse the bill from Rep. Greenlick, not from the commission.
So – in Tuesday’s meeting – Kaiser was complaining that SB555 didn’t precisely match the commission’s recommendations, and that time was running out to fix this – after Kaiser’s own executive had delayed the process, discouraged the commission from introducing a bill of its’ own, and side-stepped any opportunity to provide timely constructive feedback to the bill that we do have.
At the end of the meeting, Sen. Edwards announced that he would meet with co-sponsor Rep. Buckley to talk about ways to revise the bill to incorporate some of the industry’s feedback. Key issues include:
- Age caps or other cost control approaches. Note that the insurance companies present variously recommended age caps of between 8 and 11 years of age – which is much, much lower than most other states, and disregards the evidence that older children and adults can also be helped
- Certification and registration approaches for ABA providers and line therapists
- Miscellaneous revisions to bill language
One issue also raised was whether line therapists – paraprofessionals – should be eligible for reimbursement at all. This is a key issue – use of line therapists is a proven, cost effective technique to provide the 20 or more hours of weekly, intensive intervention that many individuals with autism need. Without reimbursement for line therapists, an Autism Health Insurance Reform law would be very ineffective for those who need it most.
Next Steps for Us:
Our time is running short – we have until April 8th to have our bill approved by either the House or Senate Health Care committee. Realistically, I think this can be done – it’s almost in our grasp – but our odds at this point are probably only about 50 / 50.
Here’s what we need to do next to push this forward:
- Continue reaching out to your own legislators (in both House and Senate) to ask them to support SB555 and HB2214. Please give them a call and send them an e-mail at least weekly, reiterating your support and asking them to contact the committees to express their support. You can find your legislators at: http://www.leg.state.or.us/findlegsltr/
- In order to ensure that we get a strong bill – without arbitrary age limits, or restrictions on reimbursement for line therapists – we need good, concise, written testimony on the benefits of providing autism treatments to older children (teenagers) and adults, and on use of line therapists. If you have experience with treatment for older children or adults – either as a recipient, caregiver, or parent – or have experience working with line therapists – please send me a short written note (addressed to “Oregon Legislators”) explaining your experience and how it was helpful. Please keep your messages polite, friendly, and informative – we’ll be sharing them with some of our best champions in the legislature, and we need their warm, enthusiastic support. E-mail them to info@AutismInsuranceOR.org; I’ll bring them to Sen. Edwards and Rep. Buckley.
- We need to ask the Oregon Commission on Autism Spectrum Disorder to formally endorse SB555 and HB2214. Please send them an e-mail explaining why Autism Health Insurance Reform is important to you, and ask them explicitly to endorse the bills in their next meeting on March 31st. Please be very courteous: many of the commissioners, as private individuals, are doing a lot to help us – it’s the commission’s official support that we’re asking for to help move this forward. Use the following e-mail addresses:
Staff@orcommissionasd.org; MGense@ORCommissionASD.org; JRystrom@ORCommissionASD.org; CEdwards@ORCommissionASD.org; RNickel@ORCommissionASD.org; DRaymaker@ORCommissionASD.org; firstname.lastname@example.org; GEakin@ORCommissionASD.org; JBernheim@ORCommissionASD.org; KErickson@ORCommissionASD.org; MPardew@ORCommissionASD.org; email@example.com; firstname.lastname@example.org
- Save the Date: let’s plan to go to Salem on March 31st, 2011 – this will be our last chance to press for a hearing on the bill, and to ask the Oregon Commission on Autism Spectrum Disorder to get behind SB555 and HB2214. We’ll present our case to the commission, and then visit our own legislators – and some other key legislators – to ask them directly for their support. I’ll follow up later with details about scheduling and logistics.