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Data shows Oregon experiences a higher incidence of mental illness than most states but provides less services. Chris Bouneff says that’s because the state painted itself into a corner where only taxpayers foot the bill for mental illness, while private insurers have historically covered little.
Bouneff came to National Alliance on Mental Illness Oregon as a volunteer in 2004 and has led the organization since 2009. The nonprofit has 17 chapters across the state, offering free education and support programs for families living with mental health disorders. “At NAMI, we are people with lived experience,” he says. “We either live with a mental health disorder, we’re a family member, or we’re a parent. Most of us are like me; we tick multiple boxes.”
NAMI serves about 14,000 Oregonians a year, advocating in the Legislature and to state and county health authorities. In the latest in a series of interviews WW has conducted with experts with insight into Oregon’s failing mental health care system, Bouneff, 54, stopped by our office last week for an hourlong discussion. The former journalist answered questions about why Oregon has struggled for so long to provide adequate mental health services. His answers have been edited for brevity and clarity.
WW: Data regularly shows Oregon has among the highest prevalence of mental illness in the country. Why?
Chris Bouneff: Nobody knows. I’ve never seen anything authoritative in academic literature or in comparative data that would explain it.
Day to day, what does NAMI do?
We get about 2,000 phone calls and emails a year from people asking, “How do I help my loved one?” Yesterday, for instance, there was a father from Marion County calling about his 22-year-old daughter who’s experiencing her first psychotic break. He’s experiencing what it’s like to take someone in the emergency room and have the emergency room tell them, “We can’t do anything.” As an advocate, you spend most of your day angry.
Dr. George Keepers, the chair of psychiatry at Oregon Health & Science University, recently told us that Oregon’s decentralized system of mental health services costs a lot and produces lousy results. What’s your view?
Well, we’ve just always had structural misalignment. Prior to 2005, when Oregon passed health insurance parity legislation, people largely had no coverage for mental health conditions. Particularly if you were an adult living with serious mental illness and you weren’t eligible for Medicaid.
Like many states, Oregon organized by county because what other entity is going to care about a whole population? But it doesn’t make sense. What other area of health care is entirely the purview of the county government? Is oncology? Heart disease? Then in 2011, we created a network of Medicaid coordinated care organizations. So you have confusion in our state: Who is responsible for mental health? Is it the coordinated care organizations? Is it the counties?
How could the system work better?
We need to start moving behavioral health care out of government and into our health care systems. We need to put more onus on commercial payers to pay for things that we know work, many of which are really only available in our Medicaid system.
Are there parity laws in other states that are more effective?
Not right now. We did a sweeping update in 2021 that I think puts Oregon at the forefront of parity legislation. And now that we’re in that position, the question is how aggressive the regulatory agencies will be. On the Medicaid side, it’s the Oregon Health Authority. The commercial side would be the Oregon Insurance Division. How aggressive are they going to be in enforcing those requirements? Oregon isn’t known for aggressive regulation.
Some people say Oregon’s insurance regulator is toothless.
There have been moments when the insurance division has really stepped up. One good example is applied behavior analysis, a therapy for autism. It became folded into Oregon’s parity law at the time. But largely my experience has been that from the attorney general to the Oregon Health Authority to the insurance division, Oregon’s bias is towards collegiality rather than really dropping a hammer when that might be more appropriate.
Where are some examples of where you’d like to see them drop a hammer?
Well, there are treatments available that haven’t traditionally been covered by commercial health insurance. For example, Oregon has been on the forefront of first-episode psychosis intervention. That onset typically happens when people are young, and we know that the closer to onset you get effective intervention, the more successful we are in keeping people on a life path. But if you have private insurance in this state, you can’t access that service. That doesn’t make sense.
Let’s about talk something more granular. What is your impression of ketamine?
Well, the evidence shows it works for treatment-resistant depression. But this reveals a perversity in our system. The data that we have are around ketamine infusions. And yet what you can get access to is the nasal spray. Because Johnson & Johnson makes it and it’s FDA approved. There’s no profit in the infusion because that is basically a generic form of ketamine. No one will do more research around that since there’s no money to be made.
Did NAMI take a position on Measure 110, Oregon’s drug decriminalization initiative?
No, we stayed neutral. We concluded if you defined the goals Measure 110 was trying to achieve, it wouldn’t have been done that way. Which showed the perils of trying to do these major endeavors by ballot measure.
Some lawmakers want to lower the bar for civil commitment. What’s your view?
We supported that legislation in 2021. [It didn’t pass.] We have formed our own workgroup to talk about bringing the bar down slightly. At the same time, if all you do is change the criteria that qualify someone to be committed and you don’t have a corresponding package of services along with it, you haven’t done anything except contribute to the ongoing logjam that we already have.
After 20 years as an advocate, what bugs you the most?
Why is it that we are almost entirely dependent on public financing for behavioral health? Why are we producing people with licensed credentials who can’t even do a comprehensive mental health assessment? Why is it that we’re not aggressive in measuring network adequacy either on the commercial side or on the Medicaid side?
Is mental health care publicly financed because people experiencing mental health crises are disproportionately low income?
No. I have served families who have streets named after them in this city, and they struggle just as much as anybody else. They often just don’t talk about it.
So then why don’t we see a wing of a hospital for mental healthcare funded by a marquee name?
Until 2005, we didn’t care in Oregon if you had a mental illness or not. If you did, we’re not going to pay for anything for your care. What hospital is going to develop services or a wing to serve somebody if nobody’s going to pay for the services?
It wasn’t until 2021, when a bunch of American Rescue Plan dollars came into the state, that the Legislature finally put money into building out that capacity. To expect in two years to make up for what should have been done over 20 years is unrealistic.