What follows is my actual testimony to the Appropriations Committee in Hartford on 2/13/08. This is the first time I ever testified like this, and although it was certainly scary and intimidating, it also was invigorating and everyone involved were wonderfully helpful and supportive. The Staff at NAMI CT walked me through everything and could not have been more supportive. They edited what I wrote, so that I could get my message across properly, and at all times they were completely professional and on the ball with everything they had to do. I cannot speak highly enough of this organization! Ok, on to the testimony.
Testimony before the Appropriations Committee
February 13, 2008
DMHAS Budget
Good evening Senator Harp, Representative Merrill, and members of the Appropriations Committee. My name is Muriel Taylor Tomer. I am Mother to a 23 year old son with chronic mental illness, and am wife to a 50 year old husband with chronic mental illness. I am 49, and I have spent my entire life watching the devastation that mental illness wreaks on families and communities, supporting loved ones who could not care for themselves, and being a victim of clinical depression since the age of 15.
My son was diagnosed at the age of 5 and my husband at the age of 45, both with pervasive, debilitating, and chronic biologically-based mental illnesses. My son has been a participant in the North Carolina behavioral health care system since he was 5 until the age of 13. Then, he became a participant in the Connecticut behavioral health care system at the age of 14, and he continues to participate today. My son was dropped from the children’s system at age 18 with no guidance or planning on how to maintain treatment or transfer to the adult system. My husband does not participate, because he has lost all faith in the Connecticut systems of care, and he has not been able to overcome the stigma attached to having a chronic mental illness.
In August 2007, I had to do the one thing I vowed I would never, ever do – I had to throw my own son, my only child, out of the house and onto the street. Without a doubt, this was, on every level, the most painful decision I have ever had to make in my entire life – and I have had to make way too many horribly painful decisions over the course of my life when mental illness reached its ugly tentacles into every facet of my world.
Before I threw out my son, I notified the behavioral health center where he is a client that I may have to take this action, and they needed to be ready to pick up the pieces for my son. As soon as I threw out my son, I immediately notified his caseworker and behavioral center, so they could act immediately and support my only child, as I expected, and as they assured me they would. I had been told, for several weeks leading up to this event, that the only way to get my son the real help he needs is to throw him onto the street – then the State would jump in, put him in appropriate housing, ensure he was safe, and he would then begin to enjoy the benefits he so desperately needed.
I trusted these people, and when I could not take anymore of my son’s raging abuse, his refusal to remain medically compliant, and watching my husband’s depression deepen to an extremely dangerous level, I told my son he had to leave. If any of you have never had to throw a child you love out of your home, and I pray you haven’t, it’s an experience I wouldn’t wish on my worst enemy. To say I was devastated doesn’t even begin to describe what happened to me that day. It changed me forever, and what followed will drive me for the rest of my life to actively fight for the needs of people with mental illness.
There was no one to pick up the pieces. I was told a series of terrible lies. The State doesn’t want parents throwing out their children in order to get help. However, this seems to be a common perception among people who work in the mental health industry. The reality is that you cannot get any help from the State of Connecticut in the way of supportive housing that is appropriate to the needs of your loved one with mental illness – because there is no housing available. Nursing homes are not appropriate for young adults with mental illness, or any adult with mental illness, as the needs are completely disparate.
I started calling DMHAS, other behavioral care providers, NAMI, lawyers that I couldn’t afford, anyone that I could think of that could help me help my son. I was desperate, outraged, falling apart, and still had to manage my husband’s depression, my depression, my full time job in a Fortune 100 company, run our home, and all the other things that people do in the course of their daily rituals. I only know that I was able to do all that because I had support from loved ones, friends, and the company where I work. Unlike many people with mental illness, I am truly blessed.
After weeks of not hearing from my son, I made another extremely difficult decision. I told my husband that I was going to take my son to North Carolina to my Mother’s home, so I could get him off the street and stable on his medications again. I was completely torn apart by this situation. My son needed immediate help desperately, and my husband did too. However, my husband could not take one more day of our son’s mental health issues in our home. The behavioral health care center made a respite bed available to my son, but he refused, stating that it was only good for ten days, and then he would be back out on the street, so he turned that down. There was nowhere for him to go in the State system.
If there had been appropriate supportive housing available to my son, my family would be in much better shape than it is now. I wouldn’t have spent 3 and a half months in North Carolina at my Mother’s to get my son off the street and back on his meds. I wouldn’t have had to run up an $1100.00 phone bill for calls back to CT fighting with staff people at DMHAS and DSS, as well as the behavioral center where my son is a client. I wouldn’t spend countless sleepless nights worrying if my son is safe or not. I would be able to relax for once, knowing that my son was enjoying appropriate mental health care by trained professionals, and that he would eventually move toward a productive life of independence. I might even be able to get my marriage back, my husband back, and my life back. I don’t remember what it’s like to relax and not worry. I don’t remember the last time my husband and I could go out to dinner and enjoy each other. I don’t remember the last time a day went by without a crisis of some kind or another with my son. I don’t remember the last time I wasn’t lied to by someone in the Connecticut systems of care.
I used to take a walk every night to relieve stress. I don’t remember the last time I did that either. I do, however, remember that I am a tax-paying citizen of this state, and that my son has yet to receive the services he was promised. I actually got him into a supportive housing situation in Connecticut while I was in NC. This was with the dedicated help of his Case Manager. This situation is jeopardizing my entire family’s mental health. I was told that my son would have his supportive housing within two weeks of me coming back to Connecticut from North Carolina. Now it’s been almost two months, and my family is falling apart again.
Not only is my husband at risk with depression and exhausted, and not been able to work for the last 5 years because of this, my son is “on the loose,” making poor decisions, and the behavioral center has nothing for him to do! He is even on a waiting list for employment services! I, however, and finally, am slowly caving in as well. I have given it my all, sacrificed everything in my life that matters to me, put myself in harm’s way of my own depression, advocated ‘til I was literally blue in the face, and I now am beginning to realize that it may have all been for naught. All the years and all the exhaustive work to keep my son alive, together, sane, and off the streets, and I am staring it all in the face again. Why? Because there is no housing, there is no money, there are so many bottlenecks in this system that it never works, and then there are the lily-coated half-truths, the government staff who are supposed to be your advocate only to turn on you when you keep on pushing.
Why is this housing so important? So that these people have a chance at having a life! So that their families can have a chance at having a life! Is this really how we want to treat our citizenry? Aren’t you ashamed that in a state full of so much wealth, we have so much disparity between the haves and the have nots? People with mental illness are just that – people like you and me. They feel just like we do. They cry when they are lonely or have been hurt. They laugh and smile when they are happy. They love and they hate. They feel passion and despair. Because they are no different than you or me, don’t they deserve the same opportunities and supports as you would give to anyone else in need.
Just like all other illnesses, mental illness affects not only the individual who has it, but systemically affects the families, friends, and employers of those who support and interact with them. There is no difference when it comes to people with mental illness. It’s just another disease. Please, please, I implore you, spend the money needed to support people with mental illness, and help them get back on their feet and back into the arms of our communities by building the supportive housing they need to reach those reasonable goals. These are our parents, children, grandparents, aunts, uncles, and cousins. They are our employers, employees, peers, school teachers, doctors, nurses, and members of our churches. These are our people, and they are us.
Thank you for your time and consideration.
Muriel Tomer
Wallingford
