Margot Head and Bill Williams tragically lost their son, Will, to an overdose in December 2012. In order to learn more about Will and his substance use disorder, their family’s experiences with the treatment and insurance systems and what they’ve learned from it all, we asked them a series of questions. They kindly composed joint responses, which appear below. We’re grateful to Bill and Margot for their honesty, their insights and their willingness to help other families.
Tell us a little about yourselves.
We have been married for forty years. Bill has had a lifelong career as a teacher in both public and private schools. Margot was a professional dancer until the arrival of our children, Elizabeth Hope in 1983, followed by Will in 1988. We’ve lived on the Upper West Side of Manhattan ever since we got married. Elizabeth is currently an actress and a doula living in Chicago and the mother of our granddaughter, Josephine Hope, age 3.
Tell us a little about Will and his substance use.
Will was bright, talented, funny and charming. He hated school but received a National Merit Letter of Commendation. He played soccer and ice hockey and was an accomplished martial artist. He became a day trader at age 18 and achieved remarkable success.
Will suffered from ADHD and displayed other significant markers of those prone toward addiction: being a risk taker, impulsiveness and anxiety sensitivity. In part, due to his financial success, he was living in his own apartment when it became apparent his substance use was beyond his control. He agreed to treatment for his substance use disorder (SUD). Nonetheless things cascaded, especially when one of his friends informed us he was using heroin. From that point onward he and we endured a two-year odyssey of overdoses, changed personality and family struggle that culminated in the accidental overdose that led to his death.
What was your first encounter with the treatment system like?
Our first encounter was encouraging, because Will was willing to go, and we were both relieved and hopeful for a positive outcome. That said, we, as parents, were naïve and had no idea how important a rigorous and lengthy initial treatment should be. In retrospect we’d have taken a far more assertive approach if we knew then what we know now.
Insurance restrictions and limitations also dictated our initial encounter. We were certainly naïve about insurance companies’ desires to spend as little as possible on the treatment of SUD, including strict limitations on what is “medically necessary.” Getting clear, direct information from insurers is difficult. We’ve often referred to dealing with insurers as a “second career.” Our impression was that insurers are intentionally vague and create self-serving loopholes.
What sort of help or hurdles did you find when trying to access treatment for Will?
Here’s what we encountered: “Catch and release” hospital policies following overdose admission. Stigma. Medical staff and doctors who were uninformed, cavalier and impatient. We had a hard time finding treatment facilities that accepted Will’s insurance coverage and treatment that was evidence-based; We had difficulties getting recognition of co-morbidity between SUD and other mental health issues. We endured a system all too willing to churn patients through outdated treatment protocols without a remote understanding of the gravity of the disease of addiction.
Give us an idea of the steps you took to get Will into treatment.
Will was over 18, medically considered an adult, so he couldn’t be forced into treatment. Our lives were dedicated to persuading Will to engage in treatment, dealing with insurers, pursuing treatment options, helping transport William to treatment, discussions with treatment providers, coping with day-to-day anxiety and mishaps, even to the point of family trauma that SUD brings. In short, it consumed our lives.
What changes would you like to see in the treatment and insurance system?
We need improvement in and improved coordination between the following parts of the system: prevention, treatment (especially the education of all medical personnel), overdose reversal medication, recovery support, law enforcement strategies and criminal justice reform. In our common battle with addiction our biggest obstacle is the wall of stigma that hems us in and blocks the path toward long overdue change. It is a wall constructed of bigotry, discrimination, judgment, ignorance, shame and fear. Change begins with knocking down that wall. We need to stop stigma from blocking what science can teach us.
Did you know what the Mental Health Parity and Addiction Equity Act was and if enforced, how would that have changed your experience in getting treatment for Will?
We were not aware of the Parity Act. What became William’s fatal overdose occurred four days after his being denied in-patient detox as “not medically necessary.” Would obtaining parity intervention immediately upon his denial have resulted in a lifesaving admission within four days? Could an appeal/complaint have been successfully resolved in that short time? We’ll never know. How do we create a bureaucracy facile enough to save lives?
What would you like to tell other parents struggling with their son or daughter’s SUD?
If you suspect a problem, there is a problem. Find evidence-based treatment as soon as you can. Beware of frauds. Anyone can hang a shingle and call themselves a treatment facility. Learn how you can be a compassionate and understanding resource for your child’s recovery. Make sure they know you are on their side and that you love them. Know that SUD is a family disease and be sure to get your own counseling. You can’t help them if you don’t take care of yourself. Don’t let shame, fear and anger interfere with your family’s recovery. SUD does not need to be a secret.
What would you like to tell those responsible for enforcing the Parity Act?
PUBLICIZE and EDUCATE about Parity. We need a rapid response mechanism for Parity violations so that SUD sufferers aren’t dead before their complaints are resolved. People need treatment at the time they ask for it, not obfuscation and bureaucratic barriers. Parity law should be like Narcan for insurance abuse – widely available and easily administered. Actually and actively enforce the law.