On October 10, 2003, I appeared before a hearing in the New York State Senate chaired by Velmanette Montgomery (D-Brooklyn) and delived the following testimony in support of Timothy's Law, which would require that insurance companies deliver mental health and substance abuse treatment in parity with their coverage for any other illness. — Deirdre Drohan Forbes
Thank you all for giving me this opportunity to tell you what Timothy's Law means to me and my family, who suffer the challenges of mental illness and chemical dependency.
My father struggled with alcoholism and my mother has suffered from untreated mental illness for most of her life. I, in turn, suffered both, and now so does my 19-year-old daughter. As is often the case, I found a husband much like my father — caring, loving, hard working and alcoholic. Fortunately my husband and I have been in recovery for more than 16 years. Unfortunately, our daughter remains in the throes of the disease and is addicted to heroin.
When I was 16, having already downed enough chemicals from alcohol and amphetamines to hallucinogens and barbiturates for my remaining sober friend to notice I had crossed some line, she suggested I see someone at a storefront clinic, which had just opened near to where I lived. Those in charge said they could not help me until I returned home and told my parents what was going on. I did as they said, and since my mother was the first parent I saw upon returning home, I told her about where I'd been that day and how I'd like to go back. Her eyes filled with panic as she slapped me hard across the face saying "Oh, my God, you can't go back there it will ruin your father's reputation." She suggested I go to confession instead.
The stigma of chemical dependency was too much for her to bear. Three years later I attempted suicide, which everyone around me seemed to deny. They were all convinced I had taken an unplanned overdose of 30 barbiturates. Now, it seemed, it was easier to accept my drug problem than a mental illness. Unfortunately I went on to suffer both afflictions for another 20 years before I was able to get sober. And 10 years after that, before my clinical depression was recognized, and treatment was started.
It's very unfortunate that stigma still keeps many people from receiving the treatment they need to get well. But even more disturbing is the inability for people to access that treatment because they cannot afford the tremendous costs to do so. And they are legion.
I hear there is a potential compromise to Timothy's Law being discussed. These include limiting coverage to children only, and excluding coverage for chemical dependency. Let's say that happened. Where exactly would my daughter or I go to get help? These two diseases are often as intertwined as poison ivy wrapped around a tree trunk. Treating my daughter's depression is pointless without her being able to participate fully in her recovery. While doing drugs there is no recovery, her depression worsens, the drug abuse worsens, and this disturbing cycle keeps her an unwanted and unproductive member of society.
Let's say the law passes and coverage for both chemical dependency and mental illness occurs but only for children. My daughter was 12 and my son was 8 when I had my breakdown. Suicide was a demon coursing through my brain, attempting to convince me it was the best solution. Without my husband, who made certain there was always someone around to keep an eye on me, and a psychiatrist who worked with me relentlessly, never knowing for certain if I'd make it to my designated appointment, and finally a hospitalization where I was treated with Electro-convulsive therapy, other wise known as shock therapy, as well as my dear friends in the mutual support group who helped me deal with my chemical dependency, I never would have recovered. Without insurance coverage my family would have been bankrupt from that hospital stay alone.
Without that support from the insurance coverage, my daughter would no doubt be without a mother to help her deal with her own demons, my husband without a wife, and my son also without a mom. And I would not be here before you pleading as a concerned, productive citizen. Compromise is not a solution. It is a death sentence for far too many.
The medications I take as part of my daily routine to keep my mental illness stabilized costs far more than many people pay in rent or mortgages in New York State. Again, I am grateful our insurance covers the costs with very small co-pay.
Over the years my family has had every type of health insurance coverage that is available. As costs continue to rise, we are always looking for ways to stretch our dollars. Neither my husband nor I work for a large business. Right now I am in school studying to become a Certified Substance Abuse Counselor with hopes of continuing on into a graduate school of social work. So perhaps someday we will have health insurance supplied by an employer.
My husband is a freelance editor and writer. He has been for most of his working life. This necessitates purchasing our own insurance. This past year we looked into N.Y. Healthy Choice insurance, which covers families like ours at less expensive rates than what is offered in the free market. We fit all the qualifications except one. You had to be without insurance at all for one year prior to application.
Those in our situation know we would beg, borrow and put off paying other bills before we were to let our health coverage lapse for fear of total bankruptcy. And besides, Healthy Choice does not offer mental health coverage. So instead we joined our first full-fledged HMO. It isn't the absolute cheapest insurance out there, but it is far from the most expensive also. And for our family we pay $1,212.00 a month for health care coverage.
We also pay an extra $600.00 a month in therapy bills because my psychiatrist takes no insurance. When I first saw him he happened to be on the insurance plan we had. When that expired, he had decided he would only accept patients able to pay their own way because insurance companies had such poor reimbursement — often less than one half the regular hourly rate — and he was wasting hours arguing with the clerks at the insurance companies for more sessions for his patients.
Could I have found another psychiatrist on my insurance company's network? Perhaps, but working with a psychiatrist is a process. It takes time to establish trust and a therapeutic relationship. I choose to continue with the doctor who knows me better than almost anyone, and who has guided me through years of trying different medications to find what works for me, rather than switching and starting all over again. That would not be in my best interest. It would not be good health care.
However, I have tried to find psychiatrists who are on our network for my daughter. This is always an anxiety-provoking exercise. Often, the psychiatrists listed as being in the providers network no longer are when I pick up the phone to make an appointment. One time I called the insurance company to give me another list of names because all the ones I'd been given before either were taking no more clients in general, or no more clients with my particular insurance. The clerk was very kind and commiserated with me on how difficult it can be with finding a psychiatrist in particular. Astonished, I replied "I don't know where you are right now but I'm in New York and if you can't find a shrink in New York then you can't find one anywhere!"
In the end I was able to find one psychiatrist who only saw people on Tuesday afternoons from 1 to 5 in a clinic setting. No wonder no one could see us. if all of them had such minimal time allocated to seeing patients, at least patients with our healthcare coverage.
But the worst is yet to come. I know long-term health care has its costs to society. But the absence of it is far more costly not only to the families who suffer from the disease of addiction, but also to all the other folks in our communities who pay the price in other ways. People with dual disorders do not get better on their own. Quite the opposite. They get sicker and sicker.
The first in-patient rehab my daughter went to, at the age of 15, kept her a total of 6 days. After the first three days, we had to plead for more time. Both the rehab and my husband spent time trying to get through to someone at the insurance company and make them understand that she needed to be away from her environment for a while. The last person my husband talked with asked him if she was using any drugs at that moment. My husband replied that she wasn?t. The person at the insurance company then said, to our utter astonishment, "Well, then she doesn't need to be there any longer." His temper beginning to take over, my husband loudly yelled, "The ONLY REASON SHE"S NOT USING DRUGS IS BECAUSE SHE'S IN A RE-HAB." We managed to get another 3 days.
Adolescents, more than any population, need time away from their environment to be able to have enough clean time under their belts to give them the confidence and learn the skills necessary to come back home and face the same situations that triggered their drug use in the first place. Ridding the body of addictive substances is one thing, ridding the mind of its compulsion to use, especially for kids who thinks they'll live eternally, is virtually impossible.
The only time my daughter had any clean time to speak of was when we scraped enough money together to send her to a therapeutic wilderness program in Utah. She spent four months there learning to survive in the high dessert in winter with little more than the clothes on her back, a sleeping bag and a weekly ration of food. The cost was over $25,000 dollars. Sure there were some wealthy people who sent their kids there, but the average family was middle class. They took out loans, used college funds, and got second mortgages, borrowed from relatives just to get the help their children needed.
We were told the next best thing to do was to get her into a therapeutic boarding school. Well, there was no money left for that but finally we got some real help from our school district. Since the district had placed her in a variety of special programs and schools since she was in first grade, they were prepared to increase the level of care when environment with lesser restrictions failed to meet our daughter?s need. She was placed out of state in a therapeutic school. She was there 9 months. She remained completely drug free for 3 months, and said she then occasionally smoked marijuana when she came home every other weekend.
From there, she returned home to another out of district placement, which at the time seemed a great choice. But part of their program was having the student do an internship. Our daughter chose one that would take her right around the corner from Tompkins Square Park on the Lower East Side of Manhattan --notorious for drugs. With pressure from the school to agree, we did. The first day there she made friends with the squatters and homeless heroin addicts in the park and decided this was the life she wanted to live.
It's almost impossible to describe the devastation we felt when she disappeared without a word. She spent that winter on the streets of Philadelphia and New York. Since then, the only time she has come home has been primarily to get some clothes, steal whatever money she could find and take a shower. She did a couple of detoxes after her boyfriend and street partner died of a methadone overdose, but always went back out after her brief stay. She quickly found another junkie boyfriend, with whom she now lives in the same Tompkins Square Park neighborhood she first made her connections. But he even threw her out about 6 months ago. She was too costly to keep. She went to a rehab and, having no where else to go, agreed to enter a long-term treatment placement run primarily by a faith-based organization. They generously used a sliding scale fee schedule and we managed to make it work. But our daughter didn't. She stayed just shy of 3 months and once again decided she could "do it on her own" because she couldn't take the rules and regulations at the rehab and she found the religious aspect overbearing.
Of course addicts will find any excuse to go back out there. That's how this disease operates. No rational human being picks a life of devastation over one of relative comfort, happiness, growth and family. But addicts and alcoholics are not rational. Throw in another mental disorder and things can really get bad. But like the O'Clairs, we couldn't finance the long-term treatment she needed. No middle class family alone can. We parents of addicts, however, don't think of giving our child up to foster care in order to get them the medical care they need and we can't afford. We hope they will get arrested for some minor possession of a drug, go through a drug court, and at long last be sent to long-term treatment. Some people even suggest that we should pray that they become homeless, strung out and unemployed so they can apply for Medicaid — the apparent Holy Grail of health care. Those are pretty odd ways to look for comprehensive health benefits.
My father must have walked some of the same paths I have today. He passed away just days before his granddaughter went to Utah to find some sobriety. In 1948, however, he served one term in the state Assembly, representing the Riverdale section of the Bronx. I still have his first campaign poster. On it he declares he will work for anti-bias legislation. He is even called a "progressive," not a term one normally associates with a conservative Republican who subsequently, as he put it, "ran for exercise" in the heavily Democratic Bronx. But he had a good heart, and believed in helping people when the deck was stacked against them.
That was over 50 years ago. I would ask you to remind your Republican colleagues who seem most reluctant to support this law, to go back to their roots and once again support anti-bias legislation. That hard-working Assemblyman knew the difficulties and hardships that drug addiction and alcoholism brought upon families. His own father died of cirrhosis, and his daughter almost died of addiction and mental illness. I hope he's watching over all of us today and somehow continuing his behind the scenes, politicking by enlightening the minds of those Senators who still believe addiction is not a disease.
Recovery happens. I'm living proof. Please make it possible for more people to become living proof by passing this vital legislation.