Posted on October 10, 2019
Family involvement is an evidenced-based practice shown through research to help people who have serious mental illness do better. Yet, many parents like me and other family members struggle to be included in the mental health system charged to care for our loved ones.
Conferences Omit Parents
This oversight is furthered along by the mental health conferences populated mainly by professionals that omit parents from the list of presenters. This can’t help their receptivity to later working with us.
I attended a conference this spring about the busy intersection between the criminal justice and mental health systems. Thankfully some people who have mental illness were featured, but not a single parent. We were represented in the audience, three at my table alone. A National Alliance on Mental Illness (NAMI) staff person was on one panel, speaking as an authority on the subject, but not from a parent’s viewpoint. Later this month, a national conference for court administrators will feature discussion of two excellent policy papers, save for the fact that they include only a glancing role for families of people with mental illness who end up in court.
Vast numbers of people in the mental health field do have first-hand experience themselves, but when they are in their professional roles, they are representing that viewpoint. I don’t believe parents are necessarily excluded with malice aforethought. I believe they are mainly excluded because little thought is given to them at all. This is typical of the entire mental health system. This serious omission flies in the face of family involvement being an evidenced-based practice necessary for a successful end game.
More Band for the Buck
If parents had more of a role in conferences, perhaps more mental health workers would see the advantages to including them. Family involvement doesn’t have to be time consuming but it is better to at least touch base with families at regular intervals rather than just when things are going south.
I know from having been an elementary teacher that it can be easier in the short term not to bother communicating with parents. In the long-term, however, parents are a huge asset in their child’s education. People with serious mental illness are not children and should be as independent as possible but they often need more support than busy mental health workers can provide.
Families could help and also save workers time by rounding out the picture about a client or helping with things that require follow through. Workers have many clients, but families have just one person and much more skin in the game.
HIPAA
Even when mental health workers think of enlisting parents, they are often overly fearful of running afoul of health privacy laws—Health Insurance Portability and Accountability (HIPAA). It is my strong belief that more of a mountain is made of this situation than need be. If clients were asked to sign releases for families as nonchalantly and routinely as they are those for mental health professionals, more would be signed.
In the past year, I attended a meeting with our son, his case manager and a new staff person. The new person whipped through a myriad of forms Jim had to sign in order for her communicate with his psychiatrist and other professionals. He signed everything unquestioningly, with his ongoing case manager sitting at his side. When the new person asked Jim to sign the release form for my husband and me, the case manager interrupted.
“Jim, do you want to sign a release for your parents?” she asked in a rather sharp tone. Jim stopped mid pen and looked at her.
Thankfully he replied, “Yeah.”
He put the pen to the paper and signed, but his case manager had caused him to stop and think about it, unlike the other forms. And this was with me sitting right there. Otherwise perhaps the case against parents would have been spelled out in more detail.
I didn’t interpret the case manager’s behavior as harboring ill will against me or parents in general, but rather as thinking she was doing due diligence on Jim’s behalf regarding HIPPA. She didn’t consider how sad her question made me feel for myself, but especially for the families where her cautionary question might succeed in blocked them from communicating.
Parents are counseled that even if their family member won’t sign a release, they can still provide information, but any parent will tell you that isn’t the same as communicating.
Doing Better
All is not gloom and doom. The Minnesota Psychiatric Society has asked me to share some thoughts about our family experience at their upcoming annual conference, and I know other conferences do include parents as presenters. NAMI works hard to educate mental health professionals to include families and not be afraid of HIPAA. Families and professionals need to work together and support each other in order to best help people with mental illness live the best lives possible, as research says we should.