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

Legislation for 2017

While our primary legislative goals for Autism Health Insurance Reform in Oregon have been achieved, we are continuing to work on legislation this year to assist with implementation and enforcement, and address related issues. Here are four bills that we have introduced into the legislature in 2017:

HB2858 Insurance Consumer Complaints and Enforcement Process:

Establishes transparent and efficient procedures to adjudicate consumer requests for restitution or enforcement of the insurance code, based on the BOLI Civil Rights Division process for adjudicating civil rights complaints.

As welcome as last week’s enforcement actions were, our experience has shown that the DoFR’s process for enforcing consumer complaints about insurance violations is very limited and has room for improvement.

Every other industry in Oregon is covered by the Unfair Trade Practices Act (UTPA), Oregon’s anti-fraud statute – but insurance is exempt. As a result, there is no private right of action in Oregon to sue an insurer for violating the insurance code or engaging in deceptive business practices – you can sue for breach of contract terms only. In recent years, there have been several attempts to amend the UTPA to apply it to insurance – and give consumers the right to sue insurance companies for fraud – but they have always failed narrowly, with arguments that consumers should go to the DoFR for help instead of suing on their own.

The problem is that while the DoFR’s consumer advocacy unit can be very helpful, actual enforcement is very rare. Worse, when insurers don’t agree to fix issues voluntarily, consumers are left in the lurch. Out of the 4,000 Consumer Complaints that the DoFR typically receives each year, there are only a few enforcement actions (in 2016, there were 5; in 2014 there were 4, and in 2015 none at all). In fact, the DoFR doesn’t normally pursue enforcement from an individual complaint – it will typically wait to see if other consumers have been impacted before taking any action. For a consumer with a rare or unusual problem, this means that actual enforcement is highly unlikely.

In 2013, we wrote and passed SB414, giving the Insurance Commissioner the authority to seek restitution on behalf of a consumer as a part of an enforcement action, to require an insurer to compensate the consumer for the actual damages that they suffered as a result of a violation. In the 3 years that it has been in effect, it has been used only once – last November.

I have seen many cases in which the DoFR has encouraged consumers to pursue litigation rather than waiting for enforcement – even though litigation is extraordinarily difficult and expensive.

HB2858 would enable consumers to do what the Legislature has consistently urged – work through the DoFR for enforcement of our rights under the Insurance Code. It would establish a specific process for DoFR to follow in response to a Consumer Complaint, based on the process that the Civil Rights Division uses to act on Civil Rights complaints. The DoFR would be encouraged to involve the consumer in settlement discussions and to seek consumer input on restitution. In the event that a consumer attempted to use the DoFR enforcement process, but wasn’t able to get a resolution within a year, then the consumer would gain a private right of action to sue on their own for violation of the Insurance Code (instead of just breach of contract).

SB917 CCO External Review:

Implements Federal regulations (42 CFR 438.402) on External Review of medical necessity determinations by CCO.

When a consumer with a commercial insurance plan is denied coverage on grounds that it is “not medically necessary” or is “experimental,” the consumer can appeal to “External Review” in which the State of Oregon (DoFR) appoints a qualified medical expert to review the case and make an independent, binding decision about whether the care really is necessary. With our autism cases, we have found this process to be extremely useful – it is fast and fair; free to consumers; and inexpensive for insurers.

For consumers on the Oregon Health Plan (Medicaid), however, there is no opportunity for External Review – if the CCO denies coverage, the only appeal is to an Administrative Law Judge with no medical expertise, to review the case in a legal proceeding. In some cases, the consumer is pitted against a CCO attorney.

Federal regulations (42 CFR 438.402) permit states to establish an External Review process for Medicaid enrollees – but don’t require it, and Oregon hasn’t done it yet.

SB917 would implement this Federal regulation, to allow Medicaid enrollees to establish the same External Review process that consumers with commercial insurance use.

HB2931 Behavior Analysis Interventionists with College Degrees:

Clarifies educational requirements for registration of behavior analysis interventionists.

Behavior Analysis Interventionists provide Applied Behavior Analysis (ABA) therapy services under the supervision of licensed providers, such as a Licensed Behavior Analyst (e.g., BCBA).

The current statute specifically requires either a high school diploma or GED certificate. Unfortunately, some qualified individuals with college degrees or even graduate degrees have been denied registration because they lack either a high school diploma or GED certificate – even though their education (college degree) actually exceeds the minimum requirement.

HB2931 would simply clarify that an interventionist with a degree from a post-secondary institution meets the educational requirement, even if they don’t have a high school diploma or GED certificate.

HB2839 Organ Transplants for People with Disabilities:

Prohibits discrimination against potential organ transplant recipient on basis of mental or physical disability.

People with disabilities often face discrimination when seeking potentially lifesaving organ transplants. Discrimination often happens at the point where someone is referred for evaluation by a transplant center, before they are ever placed on the official transplant waiting list.

In some cases, this discrimination is overt, with formal policies against providing transplants to individuals with intellectual or developmental disabilities. In other cases, discrimination is based on incorrect assumptions that individuals with disabilities are unable to manage complicated post-operative treatment plans.

Several years ago, Lief O’Niell – a 9 year old, non-verbal boy with autism from Eugene – contracted a viral infection that severely damaged his heart. His parents were informed that his death was imminent and that there was nothing that could be done. In fact, his condition was treatable with a heart transplant and equipment was available that could sustain his life for years while awaiting surgery. Given the severity of his autism, however, he wasn’t even considered and his parents weren’t informed or consulted on the treatment options. Fortunately, one of his physicians at OHSU made a series of urgent phone calls to Stanford Medical Center, which agreed to consider him for a transplant.

Today, Lief is a thriving 14-year old boy – with a new heart – who demonstrated that even a severely autistic child can comply with rigid transplant requirements with the right supports.

HB2839 would:

  • Clarify that doctors, hospitals, transplant centers, and other health care providers are prohibited from denying access to necessary organ transplants solely on the basis of a qualified individual’s disability;
  • Require that health providers consider, in evaluating the likelihood of a transplant’s success, the full range of supports available to help a person with a disability manage their post-operative care; and
  • Include a fast-track procedure for challenging discrimination to ensure that people in urgent need of an organ transplant can obtain timely resolutions to their claims.

Four other states (California, New Jersey, Massachusetts, and Maryland) have already passed similar legislation, and three more (Pennsylvania, Kansas, and Delaware) are considering it this year.

The National Down Syndrome Society has also posted information about this issue on their web page.

Recently, the Washington Post covered this issue with a description of a similar case in Pennsylvania.

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