January 4, 2008
Memo to:
From:
Re:
The Autism Caucus
Oregon Autism Alliance (OAA)
Janel Salazar, Oregon Autism Alliance
Minutes and updates to the December 21, 2007 Oregon Autism Alliance - Autism Caucus meeting
Attending
Rep. Esquivel's office
Teleconference
Rep. Peter Buckley
Rep. Chris Edwards
Rep. Sal Esquivel
Laurie Stuebing, OAA
Rep. Ron Maurer
Katie Larive, OAA
Allison MacMullin, Rep. Ron Maurer
Betsy Close, Rep. Dennis Richardson
Jim Kuntz, Medford City Council
Janel Salazar, OAA
Follow-up
Kathryn Weit, Oregon Council on Developmental Disabilities (OCDD)
Michelle Vanderwey/Snyder, OAA
Rep. Edwards reported on legislators and his/her level of commitment to the autism caucus.
OCDD developed a survey that is being used by Department of Human Services (DHS) to collect data from internal
agencies about deliverables and gaps in services for autism. Seniors and People with Disabilities (SPD) has the
survey and other DHS agencies will have by mid-January.
The Oregon Department of Education (ODE) has decided to delay data collection until fall of 2008 with the intention
to have results from the Human Resources Commission (HRC). Original intent was to combine DHS and ODE data
results into a recommendation for the Governor's budget in June 2008. The change in ODE's timeline will not delay
DHS. Rep. Edwards reports that Supt. Castillo is supportive.
HRC has developed a work group to carry out the provision of HB 2918 SECTION 2a. The Health Resources
Commission shall: (1) Conduct a review of available medical and behavioral health evidence on the treatment of
pervasive developmental disorders. Meetings are scheduled for the third Friday of each month throughout 2008
starting January 18.
There is consensus to bring nonlegislative stakeholders to the table for conversation about comprehensive coverage
for autism treatments, including but not limited to SPD/Medicaid, Speech-Language-Hearing Association,
ESD, insurance representatives, Oregon Dental Service (ODS), Oregon Medical Association (OMA), and Academy of
Family Physicians. Execution to be announced.
OAA is planning a statewide tour to education parents about legislation for insurance coverage of autism treatments
and how to navigate an appeals or external review process. OAA with the Insurance Division is compiling data on
claims filed to analyze for the 2009 session. The Department of Consumer and Business Services (DCBS) Insurance
Division reports that they have received 35 complaints related to SB 1, 13 regarding autism, and 22 related to other
conditions in the DSM IV-TR.
To date, there has not been a rules committee to clarify the language in HB 2918. This may happen in the future
(perhaps within the year) based on complaints received by the insurance division. The first few denials for autism
related treatments went to an Independent Review Organization (IRO) external review based on the interpretation
of 1) investigational treatment or 2) medically necessary treatment. Fewer denied claims are reaching an IRO for the
opportunity to receive closer scrutiny to interpret the intent of SB 1 (and now HB2918).
OAA is assembling Autism Fast Fact dossiers for legislators. Rep. Maurer indicated that regionalized data would be
beneficial. All agreed due to differences, for one example, of Education Service Districts (ESD) interactions with
school districts throughout the state. Rep. Maurer also said it would be helpful if OAA can get autism information to
legislators to in turn, disseminate to constituents through newsletters, websites, etc, to build a groundswell of
awareness and support, not only regarding children with autism but the impact of transition and lifespan services.
OAA has distributed autism insurance coverage information through Stand For Children and KindTree memberships,
joined the OCDD Oregon Network, and contacted Autism Society of Oregon and Autism Speaks about our legislative
objectives. (Autism Speaks announced plans Dec. 27, 2007 to support legislative activity in FL, CA, and MI.) Janel
Salazar is meeting with the Northwest Health Foundation regarding an RFP due in March, "to increase access by
reforming the health care system through advocacy and policy."
The Autism Caucus and OAA will simultaneously contact media with press releases from legislative and grassroots
approaches. Willamette Week is interested in reviewing a story on spec about insurance coverage for autism
treatments.
Rep. Buckley and Janel Salazar are presenting at Rebooting Democracy, January 11-12, 2008 organized by the Bus
Project. An autism policy "one-pager" is attached. If our issue obtains enough votes from approximately 350
participants, we will receive a substantial media and volunteer services package.
Submitted by Janel Salazar
----- Original Message -----
Oregon Autism Alliance - Autism Caucus
Teleconference Agenda
December 21, 2007 - 11:30am
1. Autism Caucus - update
Legislator roll call
Nonlegislator stakeholders
Public announcement
Media and PR
2. Oregon Autism Alliance - update
Consumer Education Meetings
Website
http://orautismcoverage.googlepages.com
Legislator Fast Facts
Key contacts by legislative districts
Insurance Division - SB1 complaints received
3. Moving Forward
HRC
ODE/DHS work group
Attachments
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Report of the California Legislative Blue Ribbon Commission on Autism - September 12, 2007
Autism Speaks - Arguments in Support of Private Insurance Coverage of Autism-Related Services - October 24, 2007
Pediatrics Report - Management of Children with Autism - October 29, 2007
Autism Services Demonstration Project for TRICARE - December 4, 2007
Oregon Autism Rates by School District - 1988-2006
A light lunch will be provided for attendees at Rep. Esquivel's office.
Janel Salazar
541-324-6660