It's time for Medical Insurance Companies in Oregon to cover Autism Treatment

Autism Health Insurance Reform: OHP Update; Clinton Autism Policy Discussion and Fundraiser


  • OHP Waiver “Action Alert” Results
  • OHP ABA Coverage Update – OHA Issues Emergency Rule Change
  • Tell me about your OHP coverage issues
  • Clinton Autism Policy Discussion and Fundraiser – Thursday, October 13th, 3:00 PM – RSVP needed

OHP Waiver “Action Alert” Results

A very big thank you to everyone who responded to last month’s Action Alert to “Ask the Federal Government to Stop Oregon’s Medicaid plan from Denying Coverage of Autism Treatments.”

We asked the U.S. Center for Medicare & Medicaid Services (CMS) to withhold approval of Oregon’s request to continue operating the Oregon Health Plan (OHP) until two critical issues were fixed:

  • First, we asked CMS to require Oregon to ensure that its most vulnerable children receive the medically necessary care that Congress intended, without rationing, by making it clear that Oregon must fully comply with “EPSDT.” EPSDT – short for “Early and Periodic Screening, Diagnostic and Treatment” – makes health care for children a national priority, and specifically requires coverage of “all medically necessary diagnostic and treatment services … regardless of whether or not such services are otherwise covered.…” Oregon is the only state in the country that claims the right to withhold medically necessary care from needy children on Medicaid solely to save money.
  • Second, we asked CMS to require Oregon to appoint bonafide Consumer Representatives to the Health Evidence Review Commission (HERC) develops the prioritized list of healthcare services. Oregon’s Medicaid waiver – and Oregon law – already requires two “health consumers” but in practice, qualified “health consumer” applicants for the HERC were rejected so that a CCO board member and an industry consultant could be seated on the Commission instead.

We had a very strong response to our Action Alert. In all, 84 out of the 86 comments submitted to CMS about the OHP Medicaid waiver were in support of our concerns. In addition to comments from dozens of autism families and their health care providers, there were also letters in support of our position from local and national health care advocacy organizations, including Autism Speaks, the Autism Society of Oregon, Center for Autism and Related Disorders, Center on Budget and Policy Priorities, National Health Law Program, and the Partnership to Improve Patient Care. You can see the comments here.

Most Medicaid waiver applications receive few if any comments from the public. None of Oregon’s recent applications had any comments at all; Texas’ reauthorization last year had 21 comments, which were mostly positive. Our strong response here was significant – and it has been noticed. Both the Oregon Health Authority and CMS have contacted us to discuss our concerns, and we will be meeting with senior officials from both agencies in the coming weeks.

I will keep you informed of major developments, and may reach out again for another action alert to move this forward.

OHP ABA Coverage Update – OHA Issues Emergency Rule Change

In last month’s action alert, we described significant problems with coverage of Applied Behavior Analysis (ABA) therapy by CCOs, particularly Health Share. While OHP specifically does cover ABA therapy as a treatment for both autism and for “stereotypy / habit disorder and self-abusive behavior due to neurological dysfunction,” Health Share misinterpreted an Oregon Administrative Rule to require all patients to have both autism and behaviors that were a danger to themselves or others. The results have been inappropriate denials with tragic consequences – such as 4-year old, non-verbal children with autism being denied access to medical care because their behaviors were allegedly not dangerous.

To quote the Oregon Health Authority, “This is not the intent, nor is it compliant with the HERC guidelines and federal EPSDT requirements.”

The Oregon Health Authority has issued an emergency change to Oregon’s Administrative Rules to clarify these requirements. Key changes:

  • Clarifies that ABA patients may have EITHER autism OR other neurological dysfunction with self-abusive behavior, but don’t need BOTH conditions
  • Requires document of behavior that is EITHER injurious to themselves or others OR interferes with everyday functions or activities, not BOTH
  • Eliminates age and visit limits on ABA therapy from the administrative rule
  • Eliminates requirement to submit copies of IEPs with referrals for ABA services

Health Share has also issued a statement pledging to reprocess all ABA denials, based on the new rule.

Some significant problems remain, however:

  • While age and visit limits were removed from the administrative rule, they are still included in the prioritized list. In the past, the Oregon Health Authority has confirmed orally and in writing that these limits violate the Federal Mental Health Parity and Addiction Equity Act (MHPAEA) and wasn’t imposing them; we’re concerned that CCOs may continue to impose these unlawful limits.
  • The rule still requires “documentation that less intensive treatment or other therapy has been considered or found insufficient.” The Oregon Health Plan does not provide coverage of any other treatment for autism, so a requirement that “other therapy has been considered” is flatly ridiculous. Further, CMS has issued guidelines expressly warning that “fail first policies or step therapy protocols” like this violate MHPAEA unless the plan imposes similar requirements on the predominant medical-surgical conditions. Since there is no comparable administrative rule imposing such “fail first” requirements on any other conditions, this rule violates Federal law.
  • The rule still requires an unusually large amount of documentation to support a referral for ABA. Several Psychologists and Developmental Pediatricians have contacted me to complain that this documentation is excessive, unreasonable, and overly burdensome. Requiring this documentation for treatment of autism is also in violation of MHPAEA, as outlined in the same CMS guidelines referenced above.

Tell us about your OHP coverage issues

While the Oregon Health Authority has taken these steps to try to resolve the problems with ABA, we remain concerned about this, and about the improper imposition of limits on rehabilitative care (speech, OT, or PT).

If you or your patients have been denied coverage of autism treatment by the Oregon Health Plan, we’d like to hear about it. This will help us to understand the scope of the problem, and identify people who have been affected. If we have information about approaches for appeals, we can then reach out to impacted patients and providers, and should litigation be necessary it will help to identify potential plaintiffs. It will also help us to explain the situation to the Oregon Health Authority and CMS.

(Providers obviously can’t provide patient identifying information, but general information would be helpful and you are welcome to refer your patients to me or to the Autism Society of Oregon).

It would be helpful to have the following information:

  • Patient description: (e.g., age, gender, diagnosis, key symptoms)
  • Requested treatment: (e.g., ABA therapy, speech / OT / PT, etc.)
  • CCO: (e.g., Health Share, Family Care, etc.)
  • What happened: (e.g., requested referral on date; denied because of … or approved but with limited hours, etc.)

Please contact us at

Clinton Autism Policy Discussion and Fundraiser – Thursday, October 13th, 3:00 PM – RSVP needed

In the six years that I have been writing these messages, I have made a point of being non-partisan. Once I began working with the Oregon legislature, I learned very quickly that we had strong support from legislators in both parties. While our chief sponsors (Rep. Buckley, Sen. Edwards, Sen. Hass, Sen. Bates) were Democrats, we also had enthusiastic support from many Republications, such as Rep. Kennemer, Rep. Parrish and others. Our autism health insurance reform laws (SB365 and SB696) both passed unanimously – and in fact no Oregon legislator ever cast a vote against any of our major autism bills, either in committee or on the floor.

In the current Presidential election, however, Hillary Clinton has really stood out for her support of individuals with disabilities, including autism. In January, Secretary Clinton released a comprehensive Plan to Support Children, Youth, and Adults Living with Autism and their Families, that includes improved access to insurance coverage for autism – and increased state compliance with state compliance with Medicaid coverage requirements for children with autism and other developmental disabilities. She has also announced a comprehensive Agenda on Mental Health, which critically includes enhanced enforcement of the Federal Mental Health Parity and Addiction Equity Act, and a comprehensive policy on support for individuals with disabilities.

What I really appreciate, however, is how well Secretary Clinton has worked with grassroots activists in the autism and disability communities to create these policies. All of these policy proposals were developed in consultation with a broad network of grassroots disabilities activists from across the country, led by former Congressman Tony Coelho, the author of the Americans with Disabilities Act. This is exactly the kind of health consumer input that Oregon is lacking, and that was the basis for part of last month’s action alert. And I’m exceptionally pleased that Congressman Coelho personally answered our action alert, and joined us in asking CMS to remove the EPSDT clause from the OHP waiver and provide bonafide consumer representation on HERC.

That’s why I am helping organize a national fundraiser for Hillary Clinton, focused on her Autism plan, featuring former Congressman Tony Coelho. This is a great chance to show your support for Secretary Clinton’s autism policy – and to ask Congressman Coelho questions about it.

This fundraiser will be a conference call, this coming Thursday, October 13th, at 3:00 PM Pacific time. You may RSVP by making a contribution to the campaign using this link:

(The link itself won’t give any information about the conference call, but we’ll follow up within about 12 hours with our thanks and information). If you have questions about this fundraiser, please contact me at, or my co-host Julie Kornack at



Paul Terdal

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