Angela, who asked that OPB not use her last name, says the mental health system failed her 31-year-old son. To protect his privacy, we are calling him “Andrew” (not his real name). Angela shared his story with OPB’s “Think Out Loud.”
“He has so much potential. He’s extremely intelligent. He’s articulate. And he lives with a serious mental health condition — in this case, bipolar disorder with psychosis — and that’s definitely affected his life in some pretty profound ways,” she explained.
In December of last year, Angela noticed some alarming changes in Andrew’s behavior. She says he was showing signs of paranoia in addition to extreme mood swings and delusions.
“I’d be in a car with him and he’d be saying, ‘The blue Subarus are surveilling me, but the silver ones have been sent here to protect me,’” she said.
In early March, Andrew was admitted to the Unity Center for Behavioral Health. Angela was disappointed with the care he received there.
“I was expecting therapy. I think most people would. It was minimal therapy there,” she said. “There was no discharge planning.”
With a referral from the Unity Center, Angela was able to enroll her son in an intensive out-patient program, but he wasn’t able to participate after the Oregon Health Plan (OHP) refused to pay for it. OHP is the state’s version of Medicaid.
When he was first discharged, Andrew was willing to participate in the program and take the medications that had been prescribed for him, but the denial from OHP had a devastating effect.
“That’s the very sad and horrifying thing about this — with a mental health condition, you have limited windows of opportunity, and that denial … just sort of triggered him into a downward spiral,” she said.
After that, Angela says her son’s behavior got significantly worse: he was hospitalized a second time, his girlfriend took out a restraining order against him, he threatened to harm himself as well as people close to him, and he was evicted from his art studio.
It took many months, but Angela says Andrew is now relatively stable, though she’s not sure how long that will last.
“Fortunately, he’s got a good support system around him, but frankly he’s not engaged in treatment, he’s not taking medications, he’s not in therapy. So, we’re all just sort of waiting and hoping he does better but also wondering if there’s another crisis looming around the corner,” she said.
Angela works for the National Alliance on Mental Illness (NAMI) at the national level. She teamed up with NAMI Oregon executive director Chris Bouneff to use Andrew’s story in a letter to county leaders, urging them to fix the problems they say his story highlights.
Multnomah County Commissioner Sharon Meieran says it’s helpful to have a real-life example in mind as she and her colleagues consider changes.
“This type of case study is extremely helpful both because of its emblematic nature, that it can be used as a catalyst for discussion about these bigger issues that really do affect so many more people, and it also humanizes what can otherwise feel like a very abstract, complex system,” said Meieran.
Meieran and Bouneff pointed out that this moment in time is crucial because the Oregon Health Authority, along with other government agencies, is working on an overhaul of coordinated care organizations (CCOs), provider networks that serve Medicaid recipients like Andrew.
Bouneff says the process dubbed “CCO 2.0” is a real opportunity to fix some of the problems in the original CCO contracts.
“We rushed the creation of coordinated care organization so that we could save our Medicaid system and get a big infusion of cash from the federal government,” he said. “There’s no standards. There’s no specific language in the contracts, and really we have an opportunity now for the health authority to actually put more detail and meat so that regardless of where you are in the state, we have some standards of care.”
Commissioner Meieran cautions that the kinds of changes that are needed will not come easily or quickly.
“What we’re looking at is a real paradigm shift,” she said. “We want person-centered care and holistic care, but we have a very program-centered system right now. We want coordinated care; we have a very siloed system right now.”
Bouneff says he’s hopeful, and he wants Andrew’s story to be instructive to the policy-makers considering systemic changes to CCOs.
“If we do not do it right, we will be saddled for five more years with a system that produces more stories like Andrew’s rather than starting to cut down on that. For the next few months, we have to look at that bigger picture,” he said.