Phone calls, phantom panels and advocacy

The sign on the door said “closed” but did not explain. Further investigation revealed three clinics under the same management were closed by the court at a bankruptcy hearing. As any parent of a child with mental health problems knows, finding a child psychiatrist or clinical nurse is not an easy task. The need for a new therapist as well makes the task even more daunting.  

Cheryl started exactly where she was supposed to start, with a call to their insurance company. “Let us do a search” said the representative. Unfortunately the names they gave her were dead ends due to the doctor not accepting new patients, no longer working there, etc. So when she called the insurance company back with that information they said again “Let us do a search.” This process was repeated more times than Cheryl could count. With each search the options would be further away from her home.  She told the customer service representative “As long as I don’t have to hop a plane, I’m fine.” Still no luck. The insurance company’s list of providers seemed to be what is sometimes referred to as a “phantom panel,” names on a list that are not connected to an actual, available doctor or provider.

Six months after the clinic closed, Cheryl’s son still did not have services and his pediatrician said she was no longer comfortable prescribing his medications. The insurance company was not budging in expanding their panel because they said their panel was big enough. What had become an exercise in futility was fast becoming an emergency.

Cheryl reached out to me for support and guidance. First, I referred Cheryl to the local Family Resource Center. I knew they had the ability to do an expedited referral to an area clinic that was not in her network. Then one morning, coffee in hand, we sat at her kitchen table and called her insurance company. When they told Cheryl they would do another search, I got on the phone. I explained who I was and that Cheryl’s son needed an out of network provider approved. We explained that this had been going on for six months, that Cheryl had done her due diligence by calling all the names provided to her and that no one was available. I was able to explain the larger context:- that three clinics had closed leaving lots of people without services and a limited pool of potential providers more stressed than before. I also explained this child was a DMH client with serious mental health concerns and numerous hospitalizations. That he had not had a hospitalization in a couple of years probably at least in part due to the careful combination of services that he had been receiving. Further, that he had recently been showing signs of decline.

I then said receiving comprehensive mental health treatment was in fact medically necessary and that it was obvious that their in-network panel was not sufficient, at least not in this area at this time. I requested an out of network level of benefits be authorized. The representative was very receptive and took the necessary steps that resulted in a “single case agreement” being approved.

Parents often comment about how hard it can be to navigate through this confusing system. So often they say “I feel bad for people who don’t have the support.”  Cheryl says “I just kept asking for help but– I didn’t know all the right words to use.” This was coming from a parent who is a great advocate for her child. During the previous 6 months she talked to DMH, called doctors who were not on the list, tracked down the old doctor for advice and even talked to the newspapers, still she needed support.

Cheryl called me recently and gave me some news. The psychiatrist her son has been seeing now for over a year is leaving the clinic and they have not been able to find a replacement. They are recommending she start looking elsewhere. After telling me and the DMH worker she started where she knew she had to start, the insurance company. Once again she made that call.  “Let us do a search,” said the representative.

Nancy Collier is a Family Support Specialist in the Lowell Area. She was involved in advocating for mental health parity legislation in Massachusetts.

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