If you've never dealt with severe mental illness; if you haven't sought care for someone and seen it denied -- even with the best of medical coverage; if you've never watched as the once-joyful life of a child, partner, spouse, parent or friend was ravaged by such a curse, then concepts like "mental health parity" and "outpatient assisted treatment" may have little relevance to you. But that may only be for now.
One in every hundred people suffers from Schizophrenia. Bipolar disorder affects 2.6 percent of the U.S. adult population. One in four persons in the world will be affected by some kind of mental health condition or neurological disorder at some point in their lives.
Should serious mental illness manifest before a child turns 18, parents can insist on care. However, around that time more serious forms of mental illness tend to become evident -- and denial is often a symptom. Families of patients over age 18 can find themselves shut out of major treatment decisions. They may not even be told the diagnosis. Often they are treated like interlopers in the lives of their own young adult children.
This week, the Helping Families in Mental Health Crisis Act (HR 2646), designed to help severely mentally ill patients, made it out of the House Health Subcommittee markup with bipartisan approval. This is a major step forward.
Key provisions that remain in the bill so far include:
- Creation of an Assistant Secretary of Mental Health and Substance Use Disorders to coordinate efforts and elevate the importance of mental health and severe mental illness in the federal government;
- Money to states and localities to implement lifesaving, evidence-based treatment programs (called "assisted outpatient treatment" or "AOT" laws) for people who are too sick to maintain treatment by themselves;
- An increase in the number of psychiatric inpatient beds; and
- Permitting mental health professionals to share critical diagnostic criteria and treatment information with parents or caregivers of patients who suffer from severe mental illness.
To become law, the Helping Families in Mental Health Crisis Act still needs approval from the Energy and Commerce Committee, the full House of Representatives, the Senate and President Barack Obama. The journey is far from over.
In the past, a number of inept or vile people ran some mental healthcare facilities. Short-sighted closing of hospitals and clinics occurred followed by "mainstreaming" patients into non-funded and therefore non-existent at-home treatment or group homes -- or whisking them in and out of "care facilities" in a matter of only a few days or a week. That still goes on. It's tragic. Patients denied effective mental health care often become homeless or in jail. Others wander the streets unaware of the extent of their illness. What should have been done then, and must be done now, is to learn from the past and to provide excellent facilities, services and monitoring.
People and organizations exist that are capable of running exceptional mental health facilities and programs for temporary and long-term care. The Treatment Advocacy Center reports a 66 percent reduction in violent behavior when patients with serious mental health issues enter an AOT program, where taking medication is required for them to remain in their communities. In New York State, AOT laws have reduced arrests for violent offensive behavior by 88 percent when pre-AOT and post-AOT arrests were assessed among 86 persons studied.
How AOT is implemented will make a big difference in whether the rights of patients are adequately protected. But with regard to those cases of severe mental illness where medication has proven to make a significant and positive difference in patients' lives, the status quo pales by comparison.
We should listen to patients, their families, and seek second and even third opinions in order to protect patients' rights. We should also question candidates for high public office. Are they current on serious mental health issues? Do they have a strategy for repairing a desperately inadequate mental health system? Or are they dodging the issue?
Unlike most of my blogs, I write this time not only as one who has spent years studying preventive medicine and developing health interventions, but also as someone who has been there more than once -- struggling to get a loved one required, consistent care and support. I cannot adequately describe the pain. I can only pray that you are spared it and that the rest of us will one day find you in our corner, delaying no longer, but rather changing with sensitivity, intelligence and courage that which can be changed.
Kathleen also blogs here.