Timothy O'Clair took his life on March 16, 2001. He was 12 years old. He died by hanging himself in his bedroom closet after trashing his room. That night culminated weeks of escalating distress and there had been an argument with his parents about his not taking prescribed medications.
Timothy's fate was in no small part a product of the discriminatory insurance practices that existed at that time in New York State (and throughout the country). He had a mental illness -- depression -- co-occurring with ADHD (attention deficit hyperactivity disorder) and oppositional defiance disorder, or refusing to follow rules.
It wasn't that he did not receive care -- often good care -- it was that treatment was repeatedly interrupted or not delivered. Why? Because the family's insurance had benefit limits and co-payments that required them to pay for what soon became unsustainable medical bills -- year after year.
Imagine your child having juvenile diabetes or a heart condition from birth and you discover that necessary (and effective) medical services are more than you possibly can afford because your insurance policy benefits are limited. That rarely happens with these and other physical illnesses but happens all the time when it comes to mental illnesses.
Born the youngest of three boys, Timothy had behavioral problems, often evidenced by being the class clown, from early childhood. But something happened after the Columbine massacre. For reasons the family still wonders about today he began acting strangely, heralding the trouble he would have in the years ahead. In the first inexplicable episode, while at school, he pushed back a ceiling tile in a student bathroom and hid in the overhead space, disrupting the school and frightening everyone. Disturbing behaviors became more regular and more intense.
I recently spoke with Timothy's father, Tom O'Clair, about his son's and the family's ordeal (disclosure: we are colleagues at the NYS Office of Mental Health). What I heard was a story about a family that recognized and actively sought professional care (therapy and medications for Timothy and counseling for the family); but with three children and modest income they could not afford what Timothy needed. Limits on the number of covered visits and high co-payments drained their limited budget. There wasn't parity -- or equality -- requiring that mental health care be covered the same way that physical illnesses were in New York State. At one point the family had to place him in the State's foster care system where payment for treatment would be possible.
The O'Clairs have turned tragedy into a legacy for Timothy and life saving treatment for countless others who would be foreclosed from needed mental health care by insurance policies that treat them as less than equal. Timothy's Law, the mental health parity law for New York State, passed on December 16, 2006, after almost six arduous years of campaigning and advocacy. Timothy's Law was created to remedy the unbearable, discriminatory inequity that he and so many others had faced. While it did not encompass drug and alcohol problems (in part because some existing benefits would have been lost) this law placed New York among a group of leadership states and helped build a foundation for the national parity law (The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act) which was signed into law in 2008.
The rules for implementing the Federal Wellstone-Domenici parity act were finally released some weeks ago. Families and advocates breathed a sigh of relief as the rules indicated that mental health and addiction benefits in health plans can be no more restrictive than medical and surgical benefits for out of pocket costs, for benefit limits (dollar amounts that limit what is paid annually or in a lifetime) and regarding utilization review (how insurers say no to you) -- the very problems that affected the O'Clairs' ability to sustain services for their son. This is a critical step in ending insurance discrimination.
I asked Tom O'Clair what counsel he offers to the families who frequently turn to him? He said, "...educate yourself, learn as much as you can, start with suicide prevention -- and take every threat seriously. After that, learn about the different mental illnesses and their treatment since you will need to know these to help your child (or loved one). Don't be afraid of the 'label' of mental illness because not getting help does much more harm. And, finally, seek out the support that works best for you, whether it is other families or organizations like the National Alliance on Mental Illness or Families Together. You will be grateful you did."
Wise counsel from a dad who has been there and knows what's needed.
The opinions expressed herein are solely my own as a psychiatrist and public health advocate.
Lloyd I Sederer, MD