Managing Rosie D.: Who is on the team?

In our conversation with the folks who brought the Rosie D. case, we spoke a little about the third step of the process- provision of services. The ideal, set forth in the opinion, is the treatment team, which is cross-disciplinary, shares information, is family centered and culturally competent. It seems the key is that the parent has to pick the team. Recently, an old patient came back to my office and reminded me that, as a provider, I need to respect the choices that families make. I really don't know the answers for some of the patients that pass through my office.

Last month, I told a parable about Ruel K., a preschooler with serious behavioral problems, who, through much pushing by me and my colleagues, was hooked up with a family stabilization team, Headstart, a psychiatrist and us. At the time, it seemed like there might be a positive outcome. Boy, was I an optimist.

Turns out that things haven't been going so well. The details I cannot quite figure out how to blog about without breaking HIPAA, but basically it comes down to two groups of people with two different sets of expectations. On one side, we have the agencies. All of these people see a child who is in need of services, with a family who cannot cope with his behaviors, intermittently calling for help and seeming to back away when we offer our best services. On the other side, we have the family. All they see is a child who needs medication in order to function. "He needs to be on something" for this, they will say, while not understanding that it is our sense that without the supportive services of counselling and in home safety monitoring is to neglect the complexity of his status.  Our science of brain and behavior gives me little assurance that this child can be safely treated with medication, frustrating another family in their search for help with Serious Emotional Disturbance.  The family didn't like the proposed service plan, didn't like the people who were implementing the plan and the plan hasn't worked.
Under Rosie D.'s standard, Ruel should be eligible for a case manager/care coordinator to work with the family to put together the team that would care for him.  What sort of person could put together the team to help a child like Ruel? Hold can you facilitate a connection that allows a therapeutic relationship when the members hold such different views of how the child works?  Who will the parents choose to be on the team?  What if the parent says "I don't want Headstart on the team"  Or "I don't like that psychiatrist- I will get in line for a new one in six months."?  What will happen when you try to convene these teams?

As I was pondering the reality of how this is going to work out, I remembered another story.  A baby from the mid-1980s, with a fever, on whom I performed a spinal tap that was clear, but was later found to have evidence of early H. flu meningitis.  By this time we got the spinal tap results ack, the child appeared well, and had never received IV antibiotics.   We convinced the parents to allow us to hospitalize and treat the child even though  he looked fine by the time that we had caught up with him.  After 10 days of IV antibiotics,  during which the child appeared to be in perfect health, the patient, was discharged, with no evidence of meningitis.  After that, their child was fine by both the parent's and the doctor's criteria.  I think, however,  that the parents thought I was crazy to insist on such invasive treatment of a child who appeared to have healed himself;  I followed the guidelines for the treatment of meningitis, but wondered constantly whether or not these guidelines made sense in the context of this case.  That what is going on in mental health care right now-  we have some powerful medications for the treatment of mental illness,  some guidelines for treatment, and to the outside world, those guidelines seem pretty thin.  Families want treatment in the crisis, and don't yet see the point of the other stuff we do.  In the end, I think, it will only work if the parents are to be in charge, even if their understanding of disease doesn't match ours.

Ruel's family has identified a new psychiatrist, who agreed to take the case.  I am pessimistic that medications can help him without the "wraparounds" like home-based services and Headstart, but I need to let the family form the treatment team if we are to have any hope of helping this child.