The Insurance and Treatment Systems Failed this Family. Now These Parents Are on a Mission to Help Others.

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Takeaways

  • Under the Parity Act insurers must apply equal coverage to substance use as they do for other medical benefits.
  • Parity requirements are not widely known or enforced.
  • You can help change this when you sign the petition.

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 medicationrecovery 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?

Let's Save More Lives

Help more families get the drug and alcohol treatment they need for their son or daughter. Sign the petition to enforce insurance coverage of addiction treatment.

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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.

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    Jackie

    June 21, 2017 at 8:07 AM

    I worked in the field of focused substance abuse for over one decade. I brought millions upon millions of dollars a year into various treatment centers in PA. My other work did include substance abuse but it was not totally focused. As I left the field a new caveat surfaced. That caveat can be either a policy provision or a element of the pre-certification process, “no coverage if there are legal issues involved.” Those issues could be: a court order admission, DUI or DWI, assault, etc. Many people in the industry today does not know that this exists, but it does. The pre-conceived notion that just because you have health insurance means that they will pay is just that pre-conceived. In addition, as a pattern of regular behavior it did not matter if the facility I worked at obtained precertification and had a contractually arrangement for payment; the majority of high dollar claims were rejected. Because of having so many years in the field; I knew what to do to get a claim paid. However, what I experienced in particular, with the exceptions of only about one to two carriers, once one pattern of non-payment is tackled; on comes a new one. My recommendation is to appeal everything. Contact the Attorney Generals Office in the state in which the policy is written, as well as, the Insurance Department. So sorry for your loss. I am glad that many states along with the Trump Administration is/are taking steps for a drug-free America.

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    Rae Pevy

    June 20, 2017 at 7:03 PM

    I am not the parent of a child with addiction; I am an alcoholic/addict with over 29 years of sobriety. I went through an outpatient program in 1987 and one day they said, “Of all of the people who get sober today only 6% will still be sober 10 years from now.” I thought to myself, a mother with an 8 yr old daughter, “By God I HAVE to be in that 6%! Nothing must stop me from being in that 6%!” You see, I wanted sobriety from that moment forward.

    We live in a society in which sobriety has little value. Even my own parents and relatives were hostile towards me for getting sober. My younger sister got sober 2 1/2 yrs later, but that didn’t seem to budge my parents from their position on alcoholism and drug abuse. Through all the years I was never encouraged by them to remain sober, but I did it anyway because I wanted my little girl to have a fighting chance in life. She turned out to be normal, thank God.

    Right now we have an epidemic going on in our country, but the denial of the existence of the disease is the most grave symptom of the disease. We have so many tens of millions of substance abusers in the US now that it has changed the way society views substance abuse. It is no big deal, it is par for the course, and as a matter of fact, why would anyone want to stay sober? How insane? This is the view that many people have about the topic of sobriety.

    My question to you is this: What is it going to take for American society to begin to WANT to be sober? When will it become “cool” to not be a druggie, not get all tattooed, pierced, not shoot drugs and not shirk our responsibilities as citizens?

    Kids don’t just spring up out of nowhere and start doing drugs. I know I didn’t. I grew up with the belief system that it was fun, normal, cool and tantalizing to drink, and later on that encompassed smoking pot, and doing drugs. Either you’ve got it in your DNA to be a substance abuser or you may just fall in with the wrong crowd – either way it is almost impossible to get the horse back into the barn once the door has been opened.

    As far as insurance companies are concerned, how are they going to handle the millions upon millions upon millions of people in this country who are addicted? My secretary’s daughter, 26, is laying in a hospital bed right now with a blood infection around her heart, pneumonia, and her lungs are like Swiss cheese – she very well may die. All of this is from drugs, but nothing would sway her from doing them, eventually taking her out to the streets where she became much worse and has almost died.

    The hospital plans to keep her, if she pulls through, for SIX WEEKS. Now you think about that. You think about the bill the State is going to have for this one drug addict who absolutely refused to stay sober. Multiply that by the millions. Just how far can the tax dollar or the insurance company dollar stretch? The doctors, nurses, and healthcare workers aren’t uninformed and they do care, but they are so overwhelmed with problem substance abusers that one becomes like the next.

    I believe the first thing we must do as a country is to begin to teach children to stay away from drugs when they are small and paint a picture of sobriety as being a good, desired thing. Stop making substances so readily available. Stop fighting the forces of law and order. There are a whole bunch of mistakes we’ve been making on this problem for decades and enough people have died. Lets try to do something to stem the tide of substance abusers now.

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    Janice Ballenger

    June 5, 2017 at 3:21 PM

    So I sit here in PA as a friend is frantically searching for a detox for her daughter. She doesn’t have insurance, so there’s one place in our county who will take her, with a huge waiting list. We need to do something. When someone reaches out for help, we should be there to help them and we need more subsidized detox treatment facilities.

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      Rae Pevy

      June 20, 2017 at 7:07 PM

      Have you tried Narcotics Anonymous? You can call them and see if you can get some help that way while she gets on a list for treatment. If the daughter doesn’t want to be sober it is almost impossible to get her to be sober.

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