But that’s not the way it goes in the mental health world.
When another friend, this one with a 19 year old son who has bipolar disorder, called the mobile crisis (mental health) team, her experience was vastly different. They arrived at her house and told her, “We can’t talk to you.“ They refused to hear that her son had discontinued his medications the week before or that he was barely sleeping or even that he was threatening suicide. Instead, they interviewed her son, who argued that he was fine. After they left, her son slammed out of the house and was picked up by the police a few hours later. “Why didn’t you tell them what was going on with me?” he asked his mother. “None of this would have happened.”
There is a federal law in this land called HIPAA or the Health Insurance Portability and Accountability Act of 1996. HIPAA protects the privacy of our health information in all its forms (verbal, written, electronic) and mandates that providers of care, payers of care (insurers) and health care clearinghouses comply with it. HIPAA also gives us all rights – the right to see, access and correct our medical records and to decide to share or not share our health information. Overall, HIPAA is an important law that ensures our privacy. Before it was enacted, some doctors and pharmacies sold patient lists to pharmaceutical companies. In Florida, one disgruntled public health worker sent the names of more than 4,000 people who tested positive for HIV to two newspapers.
But HIPAA seems to play out differently for young people with mental health needs and those with medical conditions. That difference in practice has an enormous impact on families, especially those where young people are living at home.
Today, record numbers of young adults are living at home with their parents. That includes young people with mental health needs like my friend whose son is 19. Data from 2012 shows that more than 32% of young adults 18 to 34 are living at home. A lot has been written about how young people (18 to 29) are generally taking longer to grow up and neuroscience tells us the part of the brain which affects planning and decision-making is not mature until the mid-20s. What’s also important is that young adults have a strong instinct to push against authority and forge their own way. What we end up with is a perfect storm consisting of the need to make good treatment choices, a still developing brain and a desire to push back against anyone telling them what to do.
Now add a discussion of rights into the mix. Once young people become 18 – and sometimes before that – many conversations about mental health care seems to begin with a discussion of their rights. They often hear they have the right to keep information private, refrain from consulting parents or other family members about health decisions and the right to refuse treatment. Unlike my friend’s daughter with a heart condition, they usually don’t hear that involving their parents and others can help get them better care. I used to think the goal was to make good medical and mental health decisions. Sometimes you would think that that was not true; that instead the goal is to make decisions bereft of the input of family and friends.
When my son was 19, he needed an adult primary care physician, a transition many parents dread. The one person who has known your child since infancy is replaced by stranger who you hope will care just as much. I went on the web, found 3 doctors that met his criteria – male and under 40 – and I called each one (with my phone on speakerphone) to see who was comfortable with serious mental illness. We debated and my son chose one and made an appointment. After some discussion we agreed that I would be there to share the family history, then he would finish the appointment. It worked out well. When his mental health problems are acute, my son needs someone to help figure out what might work since his critical thinking skills go out the window. Sure, the line can be a thin one between making the decision for him and laying out the options. But parenting teens and young adults is often about walking a fine line. Parents get pretty good at it.
Last year the U.S. Department of Health and Human Services clarified that HIPAA does not cut off communication between health care providers and the families and friends of patients. In their online guide, it is clear that health care providers do not have to unnecessarily withhold a patient’s health information from their family or others involved in their care. The caveat is that this guideline applies only if the patient (read young person) does not object. When we talk about communication between providers and a young adult’s parents, is our starting point going to be a recital of your right to decide by yourself (or refuse treatment) or is it a discussion of the way to get the best care and support?
Knowing when to stand alone on your own and when to accept help comes with experience. We’ve all let someone else talk us into something we weren’t comfortable with or simply confirm what we already knew. We’ve also had the experience of feeling like you know just the right thing to choose without help. We usually have a default that works for us – some combination of asking others to help us or pulling up the drawbridge until we are ready to listen. For decisions where the stakes are high, such as making a choice about crucial care, most of us consult with those who know us best. HIPAA isn’t supposed to prevent this. Why can’t mental health providers see that?
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Lisa Lambert, Executive Director, Parent/Professional Advocacy League (PPAL) and Children's Mental Health Network Advisory Council member – Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL), a statewide, family-run, grassroots nonprofit organization based in Boston. Lisa serves on a number of committees in Massachusetts as well as the Building Bridges Initiative Youth and Family Partnership workgroup. She has been instrumental in working with local and national media to highlight the concerns of families and youth. She is dedicated to ensuring that family voice is included in every state and national conversation about the policies, practices or services that impact them.
PPAL website, February 19, 2015. Reprinted with permission.the