Brain Injury Survivor Speaking Up

RE: CT Acquired Brain Injury ABI Waiver 1 and II

"It was my understanding, when the committee was formed, that this was to be a committee for all of us to discuss the many issues we face with the Acquired Brain Injury Waiver. As you can see from the change in the name of committee, to "ABI Waiver II Advisory Committee" we have been told the committee cannot discuss ANY issues except those regarding Waiver 2." These were the comments I addressed to the ABI Waiver II Advisory Committee about this and other issues we are facing.

My name is Craig sears and I’m a brain injury survivor Advocate Board Member Connecticut Brain Injury Support Network. I am here to question why, at the public hearing last year, I was told a committee was being formed to help me, and all the other people in the room that day, to bring our issues directly to the legislative committees who can help us.

Instead, the promises made that day have been broken, I now understand this committee cannot discuss the issues that directly impact me and all the others at the hearing that day, and instead, it is only for people who were NOT at the Hearing, and on top of that a committee was formed for a waiver that did not even exist yet? Why does the Governor's office, Dept. of Social Services and DMHAS all negotiate and promise something they have NEVER delivered on - we all had hope, and yet again, we are deceived and manipulated. Can someone explain why I was told one thing, on record, and video recorded, but now, with NO discussion it is completely changed? Just like when we were all told ABI waiver 1 was not changing and is staying the same.

After I gave my Public Comment

Letter from my Independent Living Skills Trainer to my ABI Dr about the comment Kathy Bruni Manager, Alternate Care Unit Department of Social Services said to her after I gave my comment.

”Good Afternoon, Doctor Yesterday at the public hearing a woman by the name of Kathy Bruni came up to me after it was all over and asked me if I was "Craig's staff". I answered her, "yes I am" she then proceeded to say "oh wow I feel for you, I really do". I kind of brushed it off and laughed about it because I knew she wasn't too fond of Craig because of previous in counters with each other. After Craig was done speaking I was telling him what she said but it was because I thought it was kind of funny. He also laughed. But the day went on Craig brought to my attention that she could have meant it in a hurtful way. I didn't think so but I did stop and think about it and Craig is a very loud person when he feels strongly about something he has a tendency to get hyped up and upset. But he always come to the table with facts and if he's unsure about something he asks questions. I didn't feel that it was appropriate for her to say that to me it was one thing about asking me if I was his staff but to make a comment like she did I think it would had been better left unsaid. I don't know if she said it as an attack on Craig but I know that it was completely unprofessional especially in her line of work. I hope I didn't take too much of your time I just wanted to make sure you knew what was said and how I felt about it. We all know how things can be twisted around.

Sincerely
Stephanie, (Craig's ILST)"

This isn't funny at all, it's insulting on so many levels. I do not go to these public hearings to be made fun of. I go to try and make others understand the difficulties I as well as so many other brain injury survivors and their families go through on a daily basis. It's not easy living a life of a brain injury survivor. All the challenges we have to face, all the people looking down on us because we are "different". Well everyone, including the state and those who put the changes into affect need to understand that we are human just like them and we have feelings too. The difference is you have less to worry about. You don't have to worry about people helping you get dressed or do your laundry or even cook you food. Some people even have to be feed! All these people who claim they "understand" well they don't, when you walk in a day or a life in my shoes or one of the so many other brain injury survivors or even their families you might understand it a little better. Let's stop justifying all this nonsense and look at the bigger issue. My ILST was doing her job and looking out for my best interest. She even told me about watching my language and trying not to raise my voice because people will listen better when you are calm. But I have been calm for too long and I continue to be treated like my opinion does not matter. I consider brain injury survivors apart of my extended family and I will continue to put on a fight. We need to understand the reason why we have a waiver in the first place that was made for brain injury survivors. And stop trying to put us in the same category as mental health. I am not by all means against mental health, but they are two very different disabilities! Myself and other have made this known on many different occasions.

We call it turning the clock back to a time where there was no help for brain injury survivors or their families. In 1990 the state department of mental health was being sued by 25 brain injury victims who were placed in psychiatric hospitals because there was nowhere else to put them and no services or programs for them.
Click here: http://www.clearinghouse.net/detail.php?id=439&search=

Going back to the main reason for all of this is the comments by Kathy Bruni Manager, Alternate Care Unit Department of Social Services and how it goes to shows how arrogant State employees can be along with showing how little they know, and of how much they are in need of brain injury education. An how certain "comments are better left unsaid".

Craig Sears
Brain Injury Survivor
Advocate
Board Member
CT Brain Injury Support Network