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As a psychologist, I’m delighted that the Senate is negotiating a bipartisan bill that will reform mental health. The Mental Health Reform Act of 2016 will strengthen leadership and accountability for mental health and substance abuse programs, ensure that programs keep pace with science, support state responses to mental health and substance use disorder needs, promote access to mental health and substance use disorder care, strengthen mental and substance use disorder care for children and adolescents, and improve patient care and access to mental and substance use disorder benefits. These are important steps forward.
But as the mother of an adult daughter with bipolar disorder – serious mental illness that makes it impossible for her to hold a job, go to college, or contribute to society – I’m horrified.
This bill does little to help the 15.5 million people in our country who, like my daughter, suffer from serious brain diseases including schizophrenia, bipolar disorder, and major depression. By failing to provide needed psychiatric hospital beds, the Senate bill ensures that tragedies like that experienced by Senator Creigh Deeds – knowing his son was psychotic but being turned away from care because there were no beds – will be repeated. By not including provisions for assisted outpatient treatment – court-ordered treatment for individuals with a history of non-compliance and arrests as a condition of their remaining in the community – the bill guarantees that people with serious mental illnesses will continue to fill our jails and our streets and never have the chance to meet their potentials. By focusing on mental health and the worried well, the bill fails our most vulnerable citizens – people with serious mental illnesses whose delusions and hallucinations haunt them. And by failing to stop protection and advocacy programs from lobbying against treatment, the bill prevents sick people from getting the care they need.
Most disturbing to me, however, is the bill’s failure to change HIPAA privacy laws that keep parents like me from helping the children they love. Before my daughter was 18, my husband and I were part of her care team. Knowing things would change when she reached adulthood, we consulted a mental health attorney. He told us that while we could petition the court for guardianship, he advised against it because it would be expensive, unlikely to be granted, and temporary, typically three to six months in duration.
When my daughter turned 18, her doctors were prohibited from talking with me about her diagnosis or treatments. Because I didn’t know the treatment plan, I wasn’t able to help her adhere to it. My daughter refused treatment, left home, and became addicted to meth. I have not seen her for more than five years. Every day I wonder whether she’s still alive.
America's mental health system is in crisis largely because families are systematically excluded from participating in the care of loved ones. At least half of people with serious mental illnesses suffer from a lack of awareness or insight about their illnesses, compromising ability to make informed decisions. Yet, legally, once people turn 18, they have full control of their health care and other life decisions. In most states, getting treatment requires that the person first exhibit dangerous behavior.
But what about young people like my daughter, who has not exhibited violent behavior, but nonetheless needs treatment according to every health professional with whom she has had contact?
There are good reasons to give parents more legal leverage when their adult children have serious mental illnesses:
- When families are involved, health care providers gain a more accurate understanding of the patient's history. This, in turn, guides better treatment decisions.
- When families are involved, rates of treatment adherence are higher and rates of hospitalization are lower.
My daughter is now 23. Though her father and I have begged to help her, she continues to refuse treatment.
Another bipartisan bill, making its way through Congress, The Helping Families in Mental Health Crisis Act (H.R. 2646) emphasizes early treatment for serious mental illness and psychiatric intervention for families in crisis. Though not perfect, H.R. 2646 aims to help people with brain diseases. It includes provisions for assisted outpatient treatment, inpatient psychiatric beds, and it calls for HIPAA laws to be revised so that families are no longer kept out of important conversations.
In this election year, we need to start taking brain diseases seriously. The demons of mental illness experienced by people with schizophrenia, bipolar disorder, and depression are debilitating. Families are devastated. It’s time to prioritize the needs of people with serious mental illness so they can get the help they deserve.
As you decide how to cast your vote – for president, for senator, and for congressman – insist that politicians make improving life for people with serious mental illness a priority. We must help people with brain diseases get the treatments they need because it’s the humane thing to do. If it were your child, would you feel differently?
