From: Paul Terdal [mailto:paul@terdal.com]
Sent: Monday, June 27, 2011 4:37 PM
Subject: Autism Health Insurance Reform: No SB555 this year, but we shall overcome

 

Action:

·        Come join us for a meeting in Portland on Friday, July 22^nd, at 7:00 PM, at First United Methodist Church, 1838 S.W. Jefferson Street, Portland to plan next steps – free, on-site childcare will be provided – see details below

SB555 – Autism Health Insurance Reform – won’t pass this year

Two of the three co-chairs of Ways and Means – Rep. Buckley and Sen. Devlin – have contacted me to tell me that they are not willing to schedule a hearing on SB555, and are not willing to support funding the bill this year.  I haven’t heard directly from the third co-chair, Rep. Richardson, but I’ve heard from other legislators that he isn’t ready to push for this either.

Here’s what Sen. Devlin wrote:

Dear Mr. Terdal,

Thank you for taking the time to write and share your support for SB 555, the Autism health insurance reform bill.  This session Oregon faced a $3.5 billion dollar budget shortfall, a billion of which was in the Human Services budget.  In order to balance our budget, we as the legislature had to make cuts to almost every program and budget.  That said, any new program or policy whose price tag wasn’t next to nothing, was simply not going to be possible. 

Although I don’t disagree with the policy of SB 555, the size of its fiscal impact is nearly equivalent to other holes in the state budget, holes that must be filled in order to keep the lights on in some of our existing public safety and human service programs.

In speaking with Sen. Edwards, the bill’s Chief Sponsor, I have learned that he is committed to working with the Oregon Health Authority and other stakeholders to further develop SB 555 over the interim. I am supportive of the continued work and hope to see similar legislation succeed in the near future.

Sincerely,

Senator Richard Devlin

Senate District 19

Rep. Buckley – who was the lead sponsor on the house version of our bill -- also made it very clear that while he strongly supported the concept, he just couldn’t support funding for it at a time that the legislature was cutting programs for “for seniors, the disabled, education, public safety, the courts, health care providers across the board.”  He said that he very much wants to bring the bill back in the future, when the legislature isn’t face with such severe budget cuts.

We were derailed from the beginning by an erroneous cost estimate from the Public Employees Benefits Board (PEBB), Oregon Educators Benefits Board (OEBB), and Oregon Health Authority (OHA), which estimated $40 to $80 million per biennium for public employees and educators alone.  This was based on the mistaken assumption that everyone with any form of autism would require the maximum amount of ABA at more than $70,000 per year, and would stay on it for many years.  With help from Rep. Buckley and Sen. Edwards, I was able to get them to correct this – cutting the estimated cost literally by 90% -- but it was too late to make a difference.  Ironically, with the new corrected assumptions that the government has agreed to work with, the age limit of 11 on ABA that was inserted into the bill as a way of controlling costs now provides essentially no cost savings to the government, since very few individuals with autism spectrum disorders would need ABA after that age anyway.

I regret that we were never able to have a hearing on the fiscal merits of SB555.  The state is already spending well over $100 million per biennium on care for individuals with autism, through special education and community services  -- spending which could be reduced if the insurance industry was doing its’ part to pay for medically necessary care.  While this would have involved some increase in spending on PEBB and OEBB to provide benefits for public employees (PEBB’s estimate was down to $1.2 million, OEBB’s estimate was down to $3 to $6 million for the first biennium), it would have been more than made up for by savings opportunities to the state.  If we had been able to have a hearing, we could have talked about ways to either control the costs further, or offset those costs with cuts in other programs.

Note also that the entire bill – which would have required private health insurance companies to provide meaningful autism coverage – was held up over the cost of insuring public employees and educators.  The legislators concluded that it would be inappropriate to require private insurers to do this if they weren’t covering it themselves (and I agree), so their decision was not to require coverage for anybody. 

They were also unwilling to consider alternatives, such as a narrower bill with little or no cost that would have gotten things started – like recognition of BCBA credentials for ABA providers without an explicit mandate to cover ABA.

It really comes down to a question of priorities.  Just three weeks ago, the legislature voted to increase its’ own budget by $3.5 million, to pay for more staff and new computers.  This is roughly the same amount of money that would have been required to pay for insurance coverage of autism treatment for public employees.  See:  http://www.oregonlive.com/politics/index.ssf/2011/06/oregon_lawmakers_increase_thei.html

These frustrations aside, there really is no one person or group to blame:  while many legislators were supportive, we didn’t build a critical mass of legislators who were willing to stand up and take action to push this forward.  Sen. Edwards certainly tried very hard, and put in a lot of effort on our behalf.  While Rep. Buckley was unwilling to fund the bill, he did work to help build support for the concept in hopes that it could pass in a future session. 

There were rumors that the Republicans or Insurance industry were to blame for blocking the bill – those rumors are not true.  A number of Republicans were actively involved in helping us move this forward; Rep. Kennemer, R-Oregon City, asked to be added as a co-sponsor late in the session, and worked with us to build support to the very end.  According to Sen. Monnes Anderson, Kaiser was the only insurance company in Oregon to oppose SB555; PacificSource openly advocated for it, and even tried to raise the age limit on ABA from 11 to 18.  Many other insurers were offering constructive, productive feedback.

Key Accomplishments:

Although the bill isn’t going to pass this year, our accomplishments together have been substantial.

In 2009, HB3000 never made it out of the House Health Care committee:  Kaiser sent a young man with no medical credentials to testify that there was no evidence in support of any treatments for autism, and to happily assert that all anyone with autism needed was a little speech and occupational therapy, and a referral for taxpayer-funded early intervention and special education services.

This time, the testimony in favor of the effectiveness of many interventions for autism was overwhelming, and universally accepted; the only debate was over the details.  The Medical Director of Regence / Blue Cross told the legislature 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.”  PacificSource announced publically, on the legislative record, that “We have been on the wrong side of this issue. We need to find a path forward for these families to find early intervention and services for these families.”

We also built a strong coalition of organizations and legislators in support of Autism Health Insurance Reform, and inspired others to join with us for future efforts.

Progress in Other States, and Nationally:

Last week the legislature in New York unanimously approved a very similar bill – after taking the time to consider both the costs and benefits, and to realize that (a) treating autism leads to lower long-term costs that non treating autism, and (b) getting the insurance industry involved to help defray the costs to the state saves the state money. 

Rhode Island’s legislature followed suit last Wednesday, with only 2 legislators in the entire state opposed. 

Once signed by their governors, New York and Rhode Island will be the 27^th and 28^th states in the country to have passed Autism Health Insurance Reform legislation.  See http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm for more information.

Later this year, the Federal Government will release the “Essential Benefits Package” of benefits that the health insurance exchanges will be required to cover in 2014.  The Affordable Care Act includes a requirement for “behavioral health treatment,” which was inserted as a way of requiring autism care – it is thus likely that Federal law will require this coverage for most insurance policies within a few years anyway.

The Strategy to Move Forward:

There is not a doubt in my mind that we will prevail on this issue one way or another within the next few years.  There are two things that we need to do now to keep the issue moving forward:  using and enforcing existing laws, and promoting new legislation for 2012.

Use and Enforce Existing Laws:

There is a strong legal precedent that existing Oregon and Federal Mental Health Parity laws already require insurance companies to cover treatment for autism.  In California, for instance, Kaiser publicly asserts that it won’t cover ABA – but has been overturned on appeal with such regularity that it has a contract with Easter Seals to provide it.  In Oregon, Providence has been ordered by an Independent Review Organization to cover a home-based ABA program for one family; in McHenry v PacificSource, PacificSource was ordered to cover ABA, and they have abandoned their appeals.  Earlier this month, in Washington, courts ruled against PEBB in a class action suit, ordering coverage for ABA and other intensive interventions for state employees.

Each and every one of us can take action simply by being assertive with our insurance companies, in asking them to reimburse medically necessary autism care for our family members and patients.  In many cases, they will refuse – but can be appealed.  Personally, I’ve used the Independent Medical Review process to compel Kaiser to pay for autism diagnosis and assessment at OHSU, and am now pursuing other appeals to insure timely access to health care.  Within the last year, several families I have been in contact with have submitted claims for reimbursement of ABA – and had them honored (although Kaiser has since asked at least one family for a refund on a technicality).

I plan to prepare a tutorial on the insurance claims and appeals process, and will conduct seminars around the state within the next few months to help people understand how to file and manage insurance claims and appeals.

We should also look for additional opportunities for litigation where appropriate to expand the legal precedents.  PacificSource’s endorsement and strong support for SB555 came after losing an expensive legal fight over this issue.  The more we can do to demonstrate that autism insurance coverage is already a requirement, the easier it will be to pass new legislation to clarify and enhance the law.

Promote New Legislation for 2012:

The legislature will meet again in 2012, in a short (35 day) legislative session.  We will attempt to introduce another bill then.  We will try to build upon our coalition, to include support from public employee unions and established health care advocacy organizations.

We will all need to work over the next six months to educate our legislators about this issue, and let them know how important – and affordable – autism health insurance reform really is.  We will need to meet with legislators in person, at coffees and public forums, to talk about the issue and build support.  Since the 2012 session will be very short, we need to ensure that we can move as fast as possible, and resolve any major issues with our legislation before the session begins.  If we can identify key supporters within the legislature in advance, then we can build a team of legislators to help us move the bill forward and remove obstacles.

Meeting on Friday, July 22^nd, at 7:00 PM to Plan Next Steps:

Date:  Friday, July 22^nd

Time:  7:00 PM to 8:30 PM

Location: 

·        Room 202

• First United Methodist Church
• 1838 S.W. Jefferson Street
• Portland, Oregon   97201

On-site, professional childcare will be provided.  Bring your children to the Nursery, which is at the opposite end of the hall from Room 202, where we will meet.  There is no cost, but donations will be accepted.  A map of the church building can be found here:  http://fumcpdx.org/pdf/FUMC_map_2007_color.pdf 

If possible, please let me know if you will be coming to the meeting, and if you plan to bring your children.  If your children have any particular needs or interests that you would like the childcare staff to be aware of in advance, please let me know and I’ll pass it along.

Thanks,

 

Paul Terdal,

Parent