From: XXXXXXXX
Subject: Update on XXXXX and Asking for Help AGAIN!
Date: February 27, 2008 10:40:23 AM EST
To: governor.rell@po.state.ct.us, attorney.general@po.state.ct.us, kenneth.marcus@po.state.ct.us, thomas.kirk@po.state.ct.us, jwalter@rushford.org, connbhealth@aol.com, lossrm@yahoo.com, namicted@namict.org, mary.mushinsky@cga.ct.gov, mary.fritz@cga.ct.gov, len.fasano@cga.ct.gov, prague@senatedems.ct.gov, cdr7077@aol.com, james.mcgaughey@po.state.ct.us, gwaterhouse@cacil.net, patriciadroney@yahoo.com, DPerch@courant.com, szanger@clrp.org

Good morning all:

Here is the latest on the situation with our son:

1. XXXX is on a waiting list with KUHN for employment services. Not sure when he will begin in that program.

2. Our son is currently receiving both Clinical and Case Management Services at Rushford Behavioral Health, and I have yet to see a treatment plan since his re-admittance on January 15th. In fact, I have never seen a treatment plan for Our son since he has been a client at Rushford for the last year and a half! What about his patient rights? Don’t any of you take this seriously?

3. Our son is on “hold” to move into The Corner House in Meriden, due to ongoing construction issues which involve the State of Connecticut.

4. Our son has been non-compliant with his medication since he came back with me to CT. This is due to re-involvement with friends who self-medicate and involvement with a woman 10 years his senior who had him driving her to work because she has a DUI.

5. Our son is also self-medicating again. This is due to several factors: His social group interactions, building frustration at having nothing to do and not moving into The Corner House as promised, lack of appropriate supportive services based on his needs and requirements, and lack of involvement from therapeutic and case management entities with our son’s family members, who have the most knowledgeable and reality-based understanding of what is going on in his world.

6. Our son has been making dangerously poor choices, such as sleeping in a car in 20 degree weather with the engine running all night! Staying up all night and sleeping most of the day, thereby switching his sleep schedule and possibly inducing a manic episode. Not taking his medications for days at a time and then re-starting them, which could trigger any number of health-related issues. Repeated lying to me regarding medication compliance, where he goes, whether or not he is self-medicating, drinking, etc. Meeting complete strangers on the Internet (women) and going on dates with them.

7. Last Saturday night, our son called me at 3:45 AM to come and get him, because the woman he was staying with (who is 10 years his senior) had thrown him out and all of his belongings were in her car — and it was freezing out. I went to get him, only to watch him scream at this woman, call her every epithet you can imagine, and basically get angry enough to frighten me. When I told him to calm down and that he should never talk to anyone with that type of language, he immediately screamed at me that I was taking the woman’s side, etc. It was a shocking and emotionally exhausting event for me. I took our son home and he was too wound up to sleep. My whole objective was to keep him calm. Please know that my Master’s Degree is NOT in Psychology, Social Work, or any other behavioral area. I am NOT trained to manage these issues!

8. Our son hounds me constantly for money, even to the point of waking me up when I am very sick with a migraine! Because I am his Representative Payee for his SSI, he never lets up for even an hour. Everyday he is after me for money, and when I say no to a request, he gets angry and reminds me in a very unpleasant way that this is his money, and not mine! He cannot understand that we are all paying for this money via our taxes, etc. So I have given up on trying to get him to understand.

The bottom line is this, after being back home for only 6 short weeks, I am totally exhausted again. Please remember that my husband and I have made tremendous sacrifices for our son, and there are some of you who have worked very hard to assist me in getting the services my son desperately needs, and I thank you for that. However, we, as a family, are BEGGING you for help — how many times do we have to ask? I am so thoroughly frustrated and disgusted at the way these systems of care are not integrated, and no one appears to talk to the other people they should be talking to! I have a son who is once again getting out of control, a clinically depressed husband who has taken more than any non-biological father should have to, and a step-daughter who has also been badly affected by years of what has transpired in our home regarding our son’s severe mental illness.

I get great lip service from people, they tell me they have emails I have sent out and they want to help me, but nothing ever CHANGES! After being in North Carolina for 3.5 months in a very controlled environment, I knew that our son’s medications weren’t adequately treating his symptoms, and when I wanted to tell that to our son’s psychiatrist at Rushford, XXXXXX, I was told that would not be necessary, because he would do a psychiatric assessment on our son. Where is the assessment? What kind of assessment was performed? What about the expensive and thorough neuro-psych evaluation that my Mother paid for back in August? Why aren’t my husband and I involved in this? Our son is SEVERELY MENTALLY ILL for God’s sake! His perception of reality is not like yours or mine — it is quite skewed. While his input is extremely important, he is not able to tell you what is really going on with him — in fact, he will lie until he gets what he wants, which is to have free rein of his life — always to the detriment of himself and others.

I am fed up with the lip service, and I am fed up with a system that was put in place and does not work as it should. That is not my responsibility — it is yours. I want immediate action for my son and family. He needs to be getting employment skills and training, and he needs supportive housing — he is not capable of living on his own. Maybe after lots of support and life-skills training he will be able to — but certainly not now. Now he needs everything he can get in the way of support — and so do I and my family.

My family has put up with the negligent and often rude behavior of many people in this system for 1.5 years now, and still our son is living at home wreaking havoc in our household. I will not have our family destroyed by my son’s mental illness or your inability to affect the required change in our lives. If this is how long it takes for the mentally ill population to get reasonable assistance in this state, then there is something horribly wrong with our infrastructure and systems of care. That alone should be of paramount concern to all of you on many, many levels. Please put together a plan that addresses the needs of my son immediately, as he is going back down a very bad road.

Regards,

The Parents

I also want to let everyone know that Senator Prague also offered to assist me in helping my son. I met her after my first testimony at the Appropriations Hearing in Hartford. She is a tremendous lady and is very committed to helping people in need. She and her staff member, Pam, have been wonderful!

From: XXXXXXXXX
Date: February 20, 2008 11:20:45 AM EST
To: Eileen Wachsman <Eileen.Wachsman@cga.ct.gov>, “Nesman, Randa” <Randa.Nesman@cga.ct.gov>, “Jones, Donna (Dodd)” <Donna_Jones@dodd.senate.gov>
Cc: Senator Prague <prague@senatedems.ct.gov>
Subject: Update on XXXXXX Issues

Good morning, Ladies:

I hope all of you are doing well! I want to share with you what has been taking place since my son and I returned to Connecticut on January 14th. This is a long email.

1. Our son had to go through the intake process again at Rushford Behavioral Center, because they “dropped” him from the clinical portion of his services as soon as I took him to North Carolina to get him off the street. Because of that decision, he is now on a waiting list at Kuhn for employment services and assistance. There is no ETA as to when he will get any services from Kuhn.

2. Our son now sees a psychiatrist at Rushford for all of his medical appointments, as opposed to an APRN, so that his meds will be managed more appropriately.

3. Our son had an intake interview at The Corner House in Meriden on January 15th, and he was verbally accepted into their supportive housing program. The Intake Coordinator told our son that he should be expecting to move into Corner House in approximately two weeks, however, since they are adding several new rooms to the facility, that it may take a few extra days. We were taken on a tour and we did see the construction underway.

4. Since the verbal acceptance at Corner House, we have been informed by James’ Case Manager, XXXXXX XXXXX, at Rushford, that there are now ongoing construction issues “with the State,” and there is no ETA as to when he will be able to move into Corner House. Since we have been home for a month now, this is causing significant issues in our family again. My husband’s depression is no better, our son is sleeping overnight at various friend’s homes, he is not working, has gotten involved with a 33 year old female who got a DUI, and now he uses her car to drive her to work, and uses her car as well. He is floundering around all over the place, and I am not confident that he is taking his meds as prescribed. This is yet another recipe for disaster! After all that my husband and I have gone through, and all of the wonderful assistance all of you have given our family over the last several months, I am becoming increasingly worried and frustrated at the latest turn of events. I am sure you can understand why.

5. Since returning home, the staff at Rushford rarely call to see how our son is doing, they do have him setup with weekly therapy and monthly medication appts. They did make sure that our son would receive therapy from his former therapist (who he really likes), and that was an additional blessing. They tell me that they have no services or programs for our son, so that he could be working on getting employment, or anything else, during the day. Since everything is on hold now, there is nothing for our son to do, and that is not a good thing. My husband and I take it one day at a time, and we continue to be in therapy and on medication ourselves. It is wearing me down to a frazzle, because I am back to worrying and doing the “case management” for my son, as opposed to his Case Manager at Rushford. Our son has medical issues that need to be addressed ( a rotten molar to be removed and wisdom teeth coming in), as well as blood tests that have never been done which his medications require. He needs to get a doctor and have a thorough physical, as he has alot of dizzy spells, which can be a side effect of his medications. I also manage his finances, and that is very difficult to do with a mentally ill loved one who has nothing to do and not many places to go. When will this ever get resolved?

6. I have made several attempts to speak with MS. XXXXXXXX, our son’s Case Manager at DSS in New Haven, and as usual, I never get any kind of response from her. She has never told our son or myself that he could be working in a special program that would not have him lose his benefits. I learned about that program from NAMI-CT while testifying at the Appropriations Committee hearings last week! I wonder how many opportunities our son is not benefiting from because no one has told us, or his Case Managers are not aware of the programs.

7. Since our son was re-entered fully into the Rushford Behavioral System, he has still not received any treatment plan. No one asks us what behaviors we see in our son, to get an idea of what is really going on in his life. He tells them everything is great — and that is fine with them! Sure it’s great! He isn’t working, not going forward, driving everyone around in someone else’s car, and he has no purpose in his daily life except to exist in a fantasy world! This is NOT what my husband and I want for our son. He is capable of working, and wants desperately to get employment, but he needs a lot of help to accomplish that, as well as an extensive employment assessment (not an Interest Inventory). He only receives $424.00 a month in SSI, and approximately $74.00 a month in Food Stamps, which doesn’t allow him to do much. For his life to continually be on hold is very frustrating for him as well as us. My financial situation has become untenable, because I am supporting everyone in this household. To be frank with you — it has almost broken me. I had to go into my 401K at work to get our mortgage current and continue to pay exorbitant oil prices to heat our home. We have kept our heat at 60 degrees all winter to conserve as best we can, but it is almost impossible to manage all of these issues by myself. If our son’s issues were being managed by appropriate parties, it would provide some relief to me. Just the groceries alone, as you all know, are getting more and more expensive, and our son’s $74.00 per month definitely does not feed him adequately, so, of course, I pick up the rest.

So, what can you do to help? I am not sure at this point, but our son needs appropriate housing asap, and Senator Prague mentioned something about a voucher, which I know nothing about either. He does need some variant of supportive housing — not comprehensive, but at least enough to ensure he remains medically compliant, and he needs supportive services in gaining employment and skills training. I feel as though I have exhausted all the avenues I am aware of today. His Case Manager at Rushford had him on a waiting list for Section 8 Housing (although that isn’t the appropriate situation for him either), and the waiting list is years long. He doesn’t get enough in benefits for him to go to a facility in Meriden that would be perfect, so that option is out (I can’t remember the name of it, but he would have his own apartment and have access to any supportive services he needs), and there seems to be nowhere for him to go. The Bridge subsidy is also not available to him, and we are still told that he is too old for the Young Adult Services Program (which is totally untrue — our son is just 23 and they take youth up to age 25).

We still have not gotten much farther than we were months ago, although I will never be able to thank all of you enough for your assistance in getting our son Title 19 and SSI Benefits. You all have been fantastic with your support and kind words of encouragement. If any of you have any other ideas that I could try, please feel free to let me know, as you all know I have no problem doing whatever it takes for our son — I just feel totally helpless at this point.

Although I am so glad to be back home, and I love living in Connecticut, I am still greatly saddened and disturbed by the state of affairs surrounding our most vulnerable population. This whole experience has left me sick to my stomach — and I mean that literally. I am embarrassed to say I am a resident of this state. Something must be done to get this all straightened out — for everyone’s benefit!

If I can be of any service in this regard, please let me know, as I would love to be able to do some good for the residents of this state — as we sorely need it.

Thank you all for reading this long email, and I hope you all have a great day!

Kind regards,

XXXX

Testimony before the Appropriations Committee

February 15, 2008

DSS Budget

Good evening, Senator Harp, Representative Merrill, and members of the Appropriations Committee. Thank you for the honor and privilege of sharing my testimony with you.

My name is Muriel Tomer. I am Mother to a 23 year old son 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 without appropriate health care. I have also been a victim of clinical depression since the age of 15.

When my son received SAGA benefits, he received the most horrid healthcare I have ever seen. After some experiences that were traumatic to him, now my son won’t go to any of the doctors in that system. Offices were filthy, the staff were extremely rude, and even at Yale, he was put on a waiting list for months even though he had an abscessed molar. After waiting several months, I took a day off of work to take my son to his dental appointment. for the abscessed molar, only to go all the way down there and find out the appointment was cancelled because of someone else’s emergency! After two times of repeat cancellations at Yale, my son refused to ever go again, and that molar is still rotting in his head. Now his wisdom teeth are coming in, and he has been in pain for a very long time. His Case Manager made an appointment with a dentist in Middletown to extract the tooth, but at that time my son was homeless and could not get to the appointment. Did you know that dental infections can lead to heart disease and other serious illnesses?

Now that my son is on seemingly perpetual hold for moving into a supportive housing arrangement, I have been told that even though he has Title 19, there are no doctors he can go to until he gets into that supportive housing situation. I doubt, however, that he will go to any doctors anymore. He always tells me that the services in Connecticut are actually anti-services and that everyone in the state lies about everything they say regarding services to be received under Title 19. I am beginning to see that it is a maze of misinformation..

Because my son has a pervasive mental illness, he can barely manage his own day to day life, let alone manage his Case Worker, so she can manage his health care needs. This is a difficult system to navigate.

My son desperately wants to work, and could with appropriate supports, however, if he earns even a small amount of money, he will lose his benefits. So where does that leave him? In a situation where the government in his state is functionally holding him back, forcing him living in abject poverty with lousy health care, and virtually no opportunities to improve and enrich his own life. If you think that anyone in Connecticut can live on $485.00 per month in SSI benefits, $80.00 per month in Food Stamps, and no cash assistance, I would have to voraciously challenge your perception of reality. However, if you are an adult with a serious mental health disability, then you cannot qualify for Medicaid coverage unless you are extremely impoverished.

I was recently informed by NAMI-CT that when he is able, he can apply for the Medicaid for the Employed Disabled Program, but this was never offered to us an option or explained by anyone at DSS. Unfortunately, there are many people who can’t currently work or may never be able to work, and what are they supposed to do for decent health coverage. We create barriers for those who need care the most.

How can any one of us in our community of the State of Connecticut consciously allow this to continue for one more day for anyone with mental illness. If you do not believe what I am sharing with you, then I urge you, all of you, to go and spend one day in the life of any of these individuals, so that you can gain a reality-based understanding of how to meet their needs at a reasonable standard of living. All of us should be embarrassed and horrified at how our most vulnerable community members are existing. Please fund the resources necessary to uplift people with mental illness – not persistently demean them, degrade them, and hold them back.

Thank you for your time and attention.

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

1.   I had to come back to CT when I did, or our son’s Social Security Benefits would have expired, and we would have had to go through all the work I just went through for the last several months.  In addition, he would have lost his Title 19 Benefits as well.
2. Also, I was told by Corner House in Meriden, that James would have his interview and most likely be into the supportive housing environment within 2 weeks of him coming home.
3. My husband and I had to re-adjust to our son and me being back in the home.  It was a little awkward for my husband and I, but nothing I would not have expected after such a long separation.  My husband and son were a little different, however.  After being home almost 2 months now, they are civil to each other, but that is about it.  We had some “hairy” days, but because our son is out of the house much of the time, the tension has begun to ease somewhat.
4. Working from my home office is certainly much easier than working from somewhere else!  I have all my files and work-related items at hand, so I am not floundering around looking everywhere for stuff I need at a moment’s notice.
5. I found out that I now have an $1100.00 cell bill from all the calling back and forth to different people in CT while I was in NC.  However, I must say that AT&T has been very good about me paying it off.  I wasn’t about to run up my mother’s phone bill, so I used my cell for everything.  Also, that created a record of every phone call made and received to and from the different agencies/individuals I dealt with regularly on behalf of our son.
6. Our son had to completely re-enroll in the program at Rushford Behavioral Center, where he had been a client all along.  Because he was out of the state for 4 and a half months, they made him go through the entire intake process again.  Because of this, he was put on a waiting list with KUHN, Inc., for employment services.  He has tried to get work on his own, but so far no luck.  He really needs the assistance of KUHN, or some agency to assess him and help him get employment.
7. Now our son has a psychiatrist that he sees at Rushford.  When I suggested to our son to take him the neuropsych assessment that was done on him in August, he agreed.  However, there have been no med changes or anything.  Anyone looking at that assessment would have looked at his meds.  I just don’t think anyone gives a damn about anything anymore!
8. We have now been informed by our son’s case worker that Corner House is having construction issues with the State of CT, so we have no ETA on when he can move into Corner House!  It would have been nice if someone at Corner House would have let us know that!  I am always having to ask all the questions of everyone — no one is forthcoming about any of these critically important issues.
9. I reconnected with NAMI and have done some testifying in Hartford which I will talk about in another post
10. I am SO GLAD TO BE HOME!  I really missed EVERYTHING while I was gone — most of all my husband, dogs, neighborhood, climate, etc., etc.!

 We did get the medications our son requires from Rushford, after I had very contentious conversations with staff there.  A psychiatrist called in a two week prescription, so that my husband could go to the local pharmacy and overnight them to us down here in NC at my Mother’s.  To have to go through that kind of stress right before going home is intolerable and unconscionable for any mental health care provider to put a client through.  I am still very concerned about our son’s future engagement with Rushford on almost every level.  But I will keep it all here in the blog as events unfold.

I cannot wait to see everyone!

I will update further after I have had a couple days of rest.

1. Have a medication assessment appointment and therapy appointment this first week we are back, since our son has gone without these critical therapeutic components for the last three and a half months.

2. I had already made the appointment with the group home to take place in the first week we get home, so that was already done, but to gather any paperwork needed for that to go smoothly as well.

3. I counted our son’s pills that were remaining, and realized that he will be short by several days, so I requested a 2 week prescription to be called in at out pharmacy in CT, so my husband can pick it up and overnight it to us in NC. We had come so far, that we could not have our son go without medications for even one day!

I wanted to get everything coordinated and in place before we got home, so I wouldn’t have to run around at the last minute to get these basics in place.

When our son’s Case Worker called me back, she said she had some bad news. My head began to pound instantly, and I felt sick to my stomach while I waited to hear the news. She told me that Rushford had closed our son’s case down as soon as we left for NC on September 30th, and that he now would have to go through the complete intake process again when he gets back home. The earliest time he could do that would be in early February! Then she informed me that because our son’s case was closed out, that they would not be able to call in anymore prescriptions until he had gone through the entire intake process again!

I couldn’t believe what I was hearing! I felt like we were being punished for doing the right thing by protecting our son until he had benefits and an appropriate placement! Why weren’t we being rewarded for this? Everything was WRONG with what I was hearing! I was so angry and frustrated! Here we are with one and a half weeks to go to get home, and these people at Rushford won’t even call in a two week prescription — and they NEVER told our son that he had been closed out after we left! And we have to deal with these people for the foreseeable future — these are the people who will be managing my son’s mental illness requirements! I am OUTRAGED!!!

So, after the case worker went to talk to her superiors, she did arrange to have the intake done on the 15th of January, as opposed to February. She also told me that if I take our son to our local hospital here in NC, that we could take his prescription bottles and they would right a two-week prescription for us to get home with. So, I called the Emergency Room, and after several long holds, a woman came back tot he phone and told me that our son would have to have a psychiatric evaluation before he could get exactly enough pills to get us home to CT — not even 2 week’s worth to cover the extra days before he sees someone in CT! Who is going to pay for this? I don’t have it — and then I asked if we had to wait like everyone else in the ER, and the woman said yes, we would have to wait, and it could be an all day or all night wait.

So, I called our son’s attorney, Sally Zanger, who is fabulous, and left her a voicemail about what had happened and asked her what we should do. Then I left a voicemail for Mr. Jeffrey Walter, the Director of Rushford Behavioral Center, and explained the current situation and asked him to please have the APRN call in a prescription for two weeks, so that our son would have his medication without any break. I also let him know that I could not understand why our son’s case was closed at Rushford or why he had to go through a completely new intake process, which also means he will start over again with a new therapist (and he really liked the one he had been seeing), which will be traumatic for him.

I hope to hear from both of them tomorrow. I cannot understand why this is happening to our son and family!!! All we have tried to do is the right thing, and to protect our son and get him the benefits and placement he so desperately needs — and all we have seen is what feels like punishment after punishment for every sacrifice and effort we have put forth!

Even at the last minute — they have to make this as difficult and stressful as possible — it looks like to me that they are putting up every conceivable barrier to our son getting the help he needs and is ENTITLED TO!

I am too upset to continue, but will update as things unfold.

My husband and I are so excited that we can barely stand it! Our son has a scheduled interview with a group home on the 15th, and as soon as the new rooms have been completed, then James will be able to move in to his first assisted living environment. Our son is excited too, because he can begin pulling his life together, and then we can all have a life.

I told my Manager and co-workers where I work, and they are all excited too. I have been knitting and crocheting furiously to keep my mind occupied, and to finish up some projects for family members.

Once we got the Social Security Disability and Title 19 in place, then all we had to do was find the appropriate facility, and luckily, there was one that is right for our son. And it is nearby, and the people seem to be very nice and easy to talk to.

I have been trying to rest since all this happened, because I got pretty sick over the holidays, so I am very worn out. I keep waking up in the middle of the night, because my mind is running wild with ging home to be with my husband and dogs again! I have missed them tremendously, and I can only hope I can make up the time we have all lost.

My husband went to the pharmacy this morning to get our son’s medications, so he could overnight them to us in NC today. He was told that our son’s SAGA card was not valid now, and he would have to pay almost $400.00 for the two prescriptions! We definitely don’t have that money, so I called the Supervisor of Eligibility Services at DSS in New Haven to alert her that we had an urgent situation. Our son’s medications run out tomorrow night!

This is very scary for us, as going off any of these types of medications abruptly can do serious physical and mental harm to the patient.  However, the last several days are very indicative of how we live on an emotional roller coaster from day to day, and sometimes from hour to hour.  To say this is exhausting is an understatement.

I also put in a call to our son’s attorney, so that she also knows that this is taking place.

I am really exhausted, and even though I thought I would get a great night’s sleep last night, I ended up waking up at midnight and not being able to go back to sleep until around 4:00am.  The sleep disruption is truly wreaking havoc with my nervous system and psyche.  I am so tired of being tired!

I will post an update to this medical emergency as soon as I can.  Wish us all luck — we really need it now!

Now that this approval had gone through, I immediately call the Supervisor of Eligibility Services at DSS to alert them of this fact.  This would then expedite the process of our son getting Title19 benefits.  He needs both benefits in order to go to an assisted living facility.  After talking with the Supervisor, I knew that the ball was indeed rolling in our favor at last!

Since yesterday was my birthday, I have to say that this was the most fabulous birthday gift I could have ever received!  I almost got sick from the excitement of it all!

So it has happened, and I am completely humbled by the assistance of so many kind people — people who have gone way above and beyond their normal duties to help us get these benefits in place.  I think I will be able to sleep through the night tonight, which I haven’t been able to do in a very, very long time!

1. Melissa Ott, C-APN, Greenville Health Care Center, Greenville, NC: Until Friday afternoon, on November 30, 2007, our son and I were complete strangers to Melissa Ott. We went to the Greenville Health Care Center to have someone do a physical, interview, and fill out paperwork, for the CT Title 19 Medical Packet. When we arrived at the center, we filled out the usual paperwork, and I explained that I would be paying for the physical, because our son has no health insurance — that was discontinued after he had been out of CT for more than 30 days per DSS policy. I had all of the CT paperwork that had been faxed to me by a Supervisor at DSS, and I also had our son’s original neuro-psychological assessment performed by specialists in CT in August of 2007.

I didn’t know if these people would do this physical, or if they thought I was someone who was trying to “scam” the system. These people did not know us from anywhere. The Staff were extremely warm and friendly, and they were very professional. When our son went to get his height, weight, and blood pressure taken, the Staff member asked us why we were there, and I tried explaining the situation, while I showed her the paperwork I had with me that the Dr. would need to sign. As I was explaining this, I was really nervous, and expected the nurse to look at me like I had 2 heads! Instead, she listened politely, asked a couple of questions, and told me she needed to show this to her Office Manager to make sure they could fulfill our request.

Then she came back after a few minutes, and our son and I were saying to each other that they probably would not do the physical or fill out the paperwork, because we were out of state, and completely unknown to them. I couldn’t have been more wrong! We were taken to an examining room, where we waited for the person who would hopefully examine and interview our son. Sure enough, she did come into the room, and she asked us to explain why we were there. So, I began to go through the story, trying to be as concise as I could, our son filled in the blanks, and then she looked through the form and at the neuro-psychological report, then began to give our son his physical. I got up to leave, but she said she wasn’t going to anything that would require me to leave for privacy reasons.

A couple of times during the examination, Melissa would stop and ask several questions of our son, and he answered them pretty clearly, and was honest about everything he said, and that was great, because he often has difficulty explaining things clearly. After the exam was done, Melissa read through the neuro-psychological report some more, and asked more questions of our son. She was very thorough, and very kind and patient. She asked us about our family dynamics, the mental health care our son had been getting in CT, and counseled us that James needs to have a blood test, and needs to see a psychiatrist so that his medications can be adjusted, as she (and our son) both agreed that he was hypo-manic, and that he was struggling with it to a moderate degree. This also confirmed my own suspicions that our son needed a medication adjustment. Melissa continued with the interview and exam, filled out the paperwork, and we were done! I breathed a HUGE sigh of relief, and felt tremendous gratitude for this woman who took such care and time to perform the exam and interview thoroughly, and took the time to fill out all the paperwork and also did that with great care.

Our son and I went out to the receptionist’s desk to pay and check out, and in conversation with Amber Padron and Susan Voorhes, came an offer to fax the paperwork to the DSS Office in New Haven. This saved me hours of work, because normally I would scan each page, saving it as an image, then open a Word document and paste each image into a separate page of that document, before faxing it with eFax. These two wonderful women offered to fax it all for me, so that I would not have to do it! I could not believe how kind the people in this office were — and very caring. They faxed the document, and then we made our financial arrangements. I was stunned by the many kindnesses that we were afforded us in this most unsuspecting place — probably the last place one would expect such generosity. (I say that, only because many of us are experiencing the results of big insurance companies “running” doctor’s offices in America, instead of the doctor’s running their own offices.) I was truly humbled and did my best to contain my tears. We had been through so much negativity with so many people, and here was a group of medical professionals, in a very non-traditional walk-in clinic, who had shown me once again, that not everyone is jaded or “in it” only for the money. This was an random act of kindness I won’t soon forget.

For those of you who live in the Greenville, NC area, and you want true quality healthcare by medical professionals who are caring, sensitive, gentle, and kind, the place you definitely want to go to is the Greenville Health Care Center on 3121 Moseley Drive, right behind Parker’s Barbecue on Greenville Boulevard. Their phone number is: 252-758-4455. I haven’t received health care of that quality and care in many, many years.  I will never be able to thank these folks enough for what they did to help us out!

Comments are always welcome!

So, after explaining the plan for our son, and after talking with our son and several experts on the matter, we came to a general consensus. Our son should not go to a respite center, even in an interim placement, as it just was not appropriate for his needs. What he needs is a supportive housing situation, where he has appropriate supports and autonomy and self-directed-ness as is warranted. The group thought was that if our son was placed into respite, that he would then languish there, or possibly get expelled after 10-14 days (and be put back on the street). This is not wants ANYONE wants for our son. The risk is too high to chance our son ever going out onto the street again. I certainly don’t want to have to go to another state and endure all the stressors that go along with this type of decision EVER AGAIN! Having to do this one time is inexcusable all by itself!

I also had told this caseworker that I was having a difficult time getting Title19 for our son with the Department of Social Services in New Haven, and that it had been a horrible experience to date. The caseworker said to me that if I just work really hard to get our son to go into respite that he would do whatever he could to help me out with the ongoing Title 19 issues.

Therefore, in our last, and most recent phone conversation, the verbal exchange went as follows: (C=Caseworker and M=Mother):

On 11/27/07, the caseworker called me around 3:20PM.

M: Hello?
C: How’s our boy?
M: He’s fine.
C: Did he read the Website like I told him to?
M: Yes, but he had a very difficult time and it was very overwhelming for him.
C: Why is that?
M: Because he can barely read.
C: Well, he should at least read the WRAP Outlines – they are easy to read.
M: Well, he hasn’t gotten that far yet.
C: Have you heard anything from Rushford about a respite bed?
M: No, I haven’t, but I wanted to talk to you about it. I have talked to several professionals about this idea and the general consensus is that it is not an appropriate placement for our son – even as an interim solution.
C: Well, you are going to be down there for several months. (in a very angry tone)
M: No, I won’t XXXXXX. (I have removed the caseworker’s name and made it all X’s).
C: Well, what is your solution? (again, very angry)
M: I want to pursue the XXXX House option with Britni and Title 19.
C: Well, I don’t do Title 19 — you go to DSS for that. (even more angry tone)
M: Okay, XXXX, that’s fine.
C: Ms. XXXXXX, when you decide you want help from DMHAS, you call us back. (really angry and nasty tone of voice)
M: Ok, XXXXX.
C: He hung up at this point and that was the end of the call.

This call was very contentious, and this caseworker’s voice got nastier and nastier in tone. He didn’t even want to discuss anything with me, and I never got to tell him some very important feedback:

1. The fact that he would not even deign to look at the neuro-psych report we went to great lengths to get (and so did the Dr.’s who made special arrangements to do it very quickly), was extremely troubling to me. That report outlines our son’s issues, needs, and requirements for his success as an adult male living with Bipolar Disorder.
2. If this caseworker had read the report on our son, he would have never asked him to read a Website for 30 minutes a day, because he would have known he was asking too much of our son.
3. Because this caseworker didn’t put too much stock in neuro-psych reports, as he felt that psychologists pathologize their patients and all say the same things, I was becoming increasingly uncomfortable that this person was trying to assist me in gaining appropriate services for our son. This man works for the Department of Mental Health and Addiction Services for the State of CT — remember to keep that in mind as you read this.
4. This caseworker had little or no people skills for interacting either with a parental advocate or a mentally ill young adult male. All I can think of now, is that if this is who we have staffing our mental health authority, then we all better be scared to death at the treatment our loved ones will receive.
5. This caseworker had even trivialized, and played down, our son’s pervasive mental illness — an illness that is documented from the time he was 5 YEARS OLD! This person has no right to question a diagnosis or a report that was performed by highly skilled mental health professionals and experts. I have never been so insulted as I was by this man. And when I wanted to discuss and challenge his idea for a solution, what does he do? Get irate with me and hang up on me. He certainly didn’t have any intention of helping me with Title 19 or anything else!

So, I promptly called the Medical Director of DMHAS that afternoon and left a very nice voicemail asking him to please call me back, because I wanted to discuss with him what I had just gone through with one of his caseworkers. The Medical Director was also recommended to me by other professionals as someone who would be committed to helping me get our son’s services in place as quickly as possible. I called him late in the afternoon on 11/27/07. It is now 7:17PM on 11/28/07, and I have not heard anything as of yet.

I am going to take a break, because I am feeling overwhelmed and upset again, so I need to de-stress. I think a hot cup of tea will do the trick!

Comments and feedback are welcome!

The caseworker from DMHAS assured me that he had a plan to get our son and I back to CT within the next few weeks. I listened to his plan, but was hesitant from the start. Here it is:

1. The caseworker was going to get a “respite” bed at the behavioral center where our son is still a client. This means that our son would be placed in a fairly confined and restrictive environment that only allows him to be there for no more than 10 days. Respite is a place for people to go who might have just come out of the hospital, but they need more care than they would receive if they just went straight home. It is also a place for people who don’t need a hospital stay, but they are getting into a “critical” state and need round the clock support for several days in order to get them “back on track.” It is not as restrictive as a hospital environment, but it is more restrictive than an outpatient day program.
2. Once our son was in respite, the caseworker told me that since there were so many “important” people looking at this situation, that the behavioral center would be hard-pressed to make our son leave after 10 days. During our son’s time in respite, DMHAS would be working hard to find an appropriate supportive living situation for our son. When I asked how long our sone might be in respite, the caseworker said it might be a month or it could be 4 months. It all depended on getting funding either from Title19 or Social Security Disability benefits. The caseworker’s main objective, at this point, was to get our son into respite and get us back to CT as quickly as possible.
3. There were also some other financial alternatives that the caseworker was going to pursue, such as something called the “Bridge” program, which provides for short term financial support until other funding becomes available.

The caseworker had also given my son a Website to go through at: Mental Health Recovery. This is an excellent Website, with some great information in it, however, when our son tried to go through it, he became totally overwhelmed, because the language was at too high a level for him to read and understand, and it really provides for alot of cognitive overload for someone who has learning issues as well as Bipolar Disorder. When the caseworker asked our son if he had gone to this Website, and our son told the caseworker no (the first time he asked), the caseworker told our son that since he was working so hard for him that our son needed to do his part and read through the Website at least 30 minutes a day. Our son was too embarrassed about his reading issues to explain that to the caseworker. So he simply agreed. I sat down with our son before the next phone call from the caseworker and went through the Website with him. He became quite overwhelmed and couldn’t get through too much of it at one shot.

The caseworker also asked to talk with our son about the respite suggestion. They talked, and after they were finished talking, our son told me he really did not want to go to respite, but he felt like the caseworker was really pressuring him to do it. This caseworker has a very aggressive approach and is overwhelming even for me. I reassured our son that I would confer with some experts, like therapists, psychiatrists, professionals in the mental health care industry, and most importantly, my husband, and we would come to a general consensus about what the outcome of the proposal should be.

More on this in the next posting.

Now that I have calmed down a little bit, I can continue my story….

Over the course of the last several weeks, the DMHAS caseworker that I had dealt with last Summer was again assigned to assist me in procuring appropriate services for our son. At first, I did not realize this was the same person that I had dealt with last summer — I thought this was a totally different person. Our first conversation was interesting in that this man was very charming to me right off the bat.  He told me that he had several emails in front of him.  These were emails that I had written to various entities in CT, and he had them all laid out in front of him.  He also stated that he had been given these emails in preparation for calling me to see what he could do to help. He then said that he remembered talking to me last Summer about our son. But it still didn’t click in my mind — mainly because that man was not nearly as pleasant as this one was during our initial conversation. But the voice sounded vaguely familiar — I just didn’t make the connection — yet. So we talked on about our son on a very surface level. He said he had read in one of the emails I wrote that our son had been arrested for shooting a paintball gun out of a car. I said, “Yes, I remembered that incident.”

He then said a strange thing. He stated that our son’s behavior wasn’t anything unusual, in fact it was behavior very typical for a young adult male. He continued on to say that he was sure our son was just a good guy who was acting like he was immature, and that he did not want me to pathologize our son. He mentioned the word pathologize two more times in our conversation, and he used it in the context of the first time — that he didn’t want me to pathologize our son.  I felt like he was beginning to trivialize, or minimize, our son’s mental illness and its corresponding issues.

Then this caseworker asked me to tell him about some of our son’s mental health issues and needs. So, I looked down at the recent neuro-psychological report that we had completed on our son in August 2007.  I began to read some of the more important information from the testing results. Right away, this caseworker told me NOT to read from the report, because he did not “hold much stock in them, because psychologists tend to pathologize the person they are testing and they all say the same thing anyway.”  I was quite shocked at this remark and as well the tone of his voice was very flip — as if the information in the report really didn’t amount to more than a hill of beans.

Next, the caseworker told me to tell him about our son in my own words. I explained that since I have learning disabilities and ADD, it was actually easier for me to read from the report, so I would be as accurate as possible and not get off track in our conversation. The caseworker’s response was the same as before — he did not want me to read from the report and he was not at all interested in what was in the report. So, I told him what I could about the bipolar issues, learning disabilities, etc, and as I started to go into adult performance issues and everyday living, he stopped me and said he had heard all he needed to hear.  After that, the conversation was almost totally one-sided and I was told how he was going to get our son and I back to CT in the next couple of weeks. He said he had a plan.

I will go over the plan in the next post. Believe me when I tell you that the story only gets “better” from here!

Last Summer, in 2006, when our son was homeless, I called DMHAS looking for help for our son. We needed urgent help and the gentleman I talked to treated me like I was an imbecile. All he could seem to do was recommend that I take the parenting course that NAMI offers — and that was his way of helping me – a frantic mother who had no idea whether or not our son was safe, alive, or worse! Don’t get me wrong — the courses that NAMI offers are invaluable, and I would highly recommend them to any of us that are touched my mental illness in our lives — whether it be by a loved one, ourselves, or if we work in this field. Those courses should be mandatory for many of us!

However, I was calling about my son, who I thought was sleeping outside in the woods near a paintball site, and he was terribly at risk. He was off his medication, and had been for over a month, and he had no mode of communication or money or anything! I had been told repeatedly by many individuals in the mental health industry that in order to get our son the help he needs, that we would have to throw him out onto the street.

THEY ALL LIED TO US!

Once our son was homeless, there was no help from anywhere! The CT State Mental Health Authority was telling me to take NAMI classes and read some books!

I got quite angry with this caseworker at DMHAS and told him that I was a seasoned parent of a mentally ill adult. I had been dealing with out son’s issues since he was 5 years old, and that I had been dealing with the “system” for many, many years. At this point, I told him, classes were not what I needed. I was not very nice in my tone of voice either.

I felt completely insulted by this man, and could not believe he was in the position he was in — helping me as a mental health services professional. He was no help at all, in fact, he only added immeasurably to my stress and anguish.

In my next post, I will describe my most recent experience with this same individual at DMHAS, while I have been trying to get our son the services he needs while we are fighting all this down in North Carolina. I have to stop here and take a break, because just writing about it and dredging it back up again actually makes my head and chest hurt.

I will continue the story after I calm down.

I can say that I don’t EVER want to spend another holiday like this again. This has nothing to do with my Mother, but it has EVERYTHING to do with not being able to have a traditional or “normal” holiday with my own immediate family. We were actually planning to cook together for the local Homeless Shelter and deliver the food the day before Thanksgiving, because we are giving people and want to enable others who are not as fortunate as we are. We couldn’t even do that. Very disturbing and depressing.

My depression is acting up again. When I had therapy with my psychologist and psychiatrist yesterday over the phone, I told them both that I could not sleep anymore, and that I had no energy for much of anything anymore. They were both concerned and told me to increase my Prozac by another dose per day. I hope it works. I try to be very vigilant about my depression, and I think I do a pretty good job, but this situation is way more than I expected, and it is telling on me over time.

I have been in conversations with the folks at DMHAS, and not with much success. As I think back over our conversations, I am seeing that there are some troubling comments that have been made by the caseworker. But I will explain that in a later post, as it deserves a post all by itself!

We are doing the right thing for our son, but I have a feeling it is going to get more difficult and nasty as time goes on. As usual, I will continue to update.

Feel free to comment and share!

Check out this article: Channel 8 Drug Article

Commentary is welcome!

The other interesting part of this article is that the State of CT has immunity to certain types of lawsuits — as many states do in this country. This is a very important issue to be aware of — and it is really unfair, but it is reality.

This family has an online petition to stop CT from being able to continue to have immunity, so that their daughter did not die in vain. I urge you all to read the news article, then read the petition, and then sign the petition. This is one small way we can all help and honor the life of this family’s daughter.

Article location: Channel 8 News Article

Petition Location: Justice for Alexandria Desmond and Justice for all!

Thank you for taking the time to read this post, article, and petition. Commentary and responses to this horrible story are encouraged and welcome!

1. I cannot bring our son back to CT, because he is still somewhat unstable, and we have not yet heard anything from anyone regarding an appropriate placement for him in CT.

2. My husband’s depression is not getting any better, so I absolutely cannot add more pressure to his illness by having our son move back in with us. Our son is also not completely stable, since he has been cutoff from clinical services in CT. I know now that his meds are not right yet.

Those two points raised, I am very tired of the run-around with people in the State of CT. I have not heard back from anyone, except my son’s attorney, who is wonderful. She is with the Connecticut Legal Rights Project, and she is really excellent.

My frustration level and anxiety level are getting pretty high, and most of the time I feel like I am going to implode (or explode, I’m not sure anymore which one!).

I was so ignorant and naive to think that if I “did the right thing,” and worked really hard at advocating for our son, that this would have “worked out” by now. I am a huge disappointment to myself, and I know I am to my husband and our son. This really bothers me.

However, I will not give up, and I am in this for the long haul — and from the looks of it all — it will be a very long haul, indeed.

Thanks for reading.

Table of Mental Health Contacts in Connecticut

Our son is starting to get more argumentative over time. He is very frustrated while he is waiting for news of all of these battles. He has nothing to do most of the time, he is cutoff from therapy and his friends, and this is proving to be disastrous. My Mother is wearing down also, because this has gone on so long. She is in her mid-70′s, and although very healthy and active, the mental drain of our son’s mental illness issues, and my issues, are taking their toll. She is getting more and more tired, and waking up in the middle of the night too often.

I am waking up in the middle of the night more and more, and I am not able to go to sleep for at least a couple of hours most times. Then I am exhausted for the rest of the day. There is more and more of a breakdown of communication between the three of us, as the triangle that existed many years ago seems to be re-forming. What I mean by that is that my Mother is starting to act like a co-parent, instead of a grandparent. This undermines whatever I do to manage our son’s illness, and try to get him to manage his illness on his own. If I try to discipline our son, or make him stay on task, my Mother will intercede and back our son instead of me. This is a very bad situation, and one that I remember from many years ago, when I was a single Mother and our son was a toddler. It’s so true that old behaviors do not change unless the person wants to make changes, because they have to recognize their behavior is causing a negative situation.

I am beginning to feel old emotions stir back up that are actually harmful to me. I try to stem the tide of these feelings, but they are becoming more evident throughout the day. What I feel is that I cannot be a mother to our son, because my Mother interferes with almost everything I do or say regarding our son. This creates an untenable situation that has created a living breeding ground for arguments, volatile discussions, and increasingly negative pressure on me. I love my Mother, as she is a wonderful Mother, but she tries to be a Mother to our son also, and that does not work. After years of therapy and treatment for our son, I know what he needs, and what he should not do on many different behavioral levels. For some reason, my Mother goes against all of this, and feels sorry for our son, thereby allowing him to feel quite empowered with regard to me. When my Mother interferes, our son immediately starts an argument with me, and he and my Mother team up against me in a very solid front. This has gone on since I first had to live with my Mother when our son was very young. My Mother knows no boundaries when it comes to our son — my husband’s and my son — not hers and mine!

These types of behavior act to undermine my authority as a Mother to our son, and therefore begins to erode my self confidence, and inner strength. It also makes me very angry, and I keep that very much in check, so as not to disrupt the entire household. This is what drives my depression — suppressed anger. Because our son needs special treatment, I don’t raise my voice, even in a heated discussion. I remain calm, and talk myself off the edge in the midst of the storm, so that I can keep our son calm. If I didn’t do this, then our son’s rage would emerge and boil over, and then it really goes from bad to worse in a hurry. I already have to listen to his ranting and raving about how horrible I am for putting him in psychiatric hospitals and residentials when he was younger. I listen to him cry about how I, and his father, abandoned him, neglected him, and didn’t raise him properly. I try to keep in the forefront of my mind that it’s our son’s illness that drives these conversations, but it doesn’t make it any easier for me. I am not trained to manage anyone’s bipolar illness. I am not geared toward being able to fend off psychological and verbal abuse — in fact, it can “lay me out” pretty quickly. The sad thing, is that most people don’t understand than any severe mental illness is a FAMILY ISSUE — it’s never just an issue with the person who is mentally ill — it affects everyone in a family, and close friends as well. Our family has been absolutely and completely traumatized by our son’s mental illness. Bipolar illness is a severe mental illness, and it is complex and difficult to manage in the best of situations.

The other part of why I am feeling like I am sliding down the “slippery slope,” is that having to battle with multiple agencies in CT, as well as filing paperwork, being treated like I am less than human by agency workers, and so on, is also very debilitating and exhausting. While many people are very compassionate and sympathetic, and that is greatly appreciated, there has really been no action as of yet. The letter writing, phone calls, faxing, and everything else that goes along with this type of advocacy, takes a tremendous amount of energy, quick-wit-edness, and commitment to many hours of research and and intense thinking. It would be exhausting if it were the only thing I had to do in this world. But for me, it is just an addendum to everything else I do and think about.

I worry about my husband and our marriage — this part of the journey has really taken a toll. I have 4 beautiful dogs that I miss tremendously. After my husband, they are my solace and comfort for everything in my life — which usually revolves around our son’s illness and adjacent issues. I miss my plants, and taking care of them all. I miss my things — all of the feminine things we women have around our home, you know, special containers, jars of moisturizer, keepsakes that remind you of good things, past letters and cards from loved ones, photographs of the happy times, pots and cookware that are as familiar as your own skin.

The daily habits that I had in CT are all gone and changed. The times when my husband and I would spontaneously decide to run out somewhere to look at something, go to a flea market, go to a cafe for coffee, curl up in the bed with our dogs to watch some good sci-fi, or just spend time planning our future as old people, are the most precious of memories that I hang on to everyday that I am away. All of the looks that two people share throughout the course of the day are now not part of my daily life — and I miss those looks that we shared. We love each other very deeply, even after going through all the years of dealing with a mentally ill child. We love our son, and we are both committed to getting our son the help he needs, but we cannot do it without help. Help from agencies, individuals, and loved ones. We need alot of help, and we need it now, and at 100% capacity. I am now feeling like a total failure at advocating for our son. Nothing I have done has worked, and I have not been able to find appropriate legal representation for my husband and I and our needs.

If anyone out there has any tips on how to get this all accomplished, please let us know. We are good people who love our son, but we are dying a slow death from all of this, and that should NEVER happen to anyone.

Thank you for reading.

To:

governor.rell@po.state.ct.us (Governor Rell), attorney.general@po.state.ct.us (Richard Blumenthal), szanger@clrp.org (Sally Zanger), gwaterhouse@cacil.net (Gary Waterhouse), jwalter@rushford.org (Jeffrey Walter), rick@vintagecycles.net (Rick Tomer), RMHB2@aol.com (Wayne Starkey), DPerch@Courant.com (Daryl Perch), connbhealth@aol.com (Jon Pedro), mary.mushinsky@cga.ct.gov (Representative Mushinsky), james.mcgaughey@po.state.ct.us (James McGaughey), namicted@namict.org (Kate Mattias), thomas.kirk@po.state.ct.us (Thomas Kirk), cdr7077@aol.com (Marc Galluci), mary.fritz@cga.ct.gov (Deputy Speaker Fritz), len.fasano@cga.ct.gov (Senator Fasano), hannah.carlson@po.state.ct.us (Hannah Carlson), bwright@rushford.org (Britni Wright)

Subject: Update on Our Son’s DSS Situation

Date:Thursday, November 08, 2007 4:22:51 PM

Hello all:

Our son’s caseworker at Rushford, Britni Wright, called me this afternoon to inform me of a conversation she had this morning with Ms. XXXX of DSS. As follows:

Britni called Ms. XXXX this morning. Ms. XXXX asked Britni what our son’s status currently is, as a client, at Rushford Behavioral Center. Britni explained that our son was closed in clinical, but remains open in meds management and case management. Ms. XXXX told Britni that Ms. XXXXXX closed our son’s Title19 case file as of yesterday, because he is not a legal resident of CT. She based her statement on her belief that since he has been out of the state for more than 30 days, he is no longer a resident, and neither am I. Britni was quite shocked at this turn of events, and was totally taken back by it. Ms. XXXX continued to tell Britni that our son and I would have to come back to CT and re-file for everything and start the entire process over again. I asked Britni’s permission to tell this story in this letter, and she said yes. Britni is also copied on this email if anyone needs to speak with her about this situation. (Again, I thank God for Britni, as she is the only one who cares about our son and his well being other than my own family.)

I have received no such information from either Ms. XXXX or Ms. XXXXXX. In fact, when I spoke with Ms. XXXX yesterday on the phone, I told her I wanted to make sure they did not close our son’s file until all of this was resolved. She told me that she would not close his case. Well, apparently she didn’t, but Ms. XXXXXX did. My understanding of the reporting structure is that Ms. XXXX is Ms. XXXX’s Supervisor. This is really unbelievable — the whole situation is out of control and becoming surreal.

Someone needs to do something about this immediately. I feel that my son is being discriminated against. Furthermore, I feel abused by the treatment of these women and the Department of Social Services. What did I and my family ever do to deserve this kind of treatment? Our son is a legal resident of the state of CT, as am I, and now I have people infringing on my son’s civil rights — and possibly mine and my husband’s, as we are taxpaying members of the State of CT. Something is very, very wrong here, and I hope that someone on this email distribution list will do what they need to in order to get this straightened away asap!

What is it going to take?

Regards,