They say are opinion matters

Re: Public Hearing & Meeting on Proposed Amendments to the Acquired Brain Injury Medicaid Waivers

I am a brain injury survivor receiving services from the ABI Waiver 1 program. It is easy to confuse me and upset me, so I am ask that everyone remember I do have a brain injury, you can't see my injury, but it is there.

I can't believe they say our opinion matters but yet we only have 3 minutes to talk, fact No one is looking at the bigger picture!

In 2014 - 2016 the community made the State and all of the policy makers very much aware that ABI waiver II was a mistake and will not work for brain injury survivors! But yet we are here today because DSS is making changes to ABI waiver one (a brain injury rehabilitative model) trying to make it just like ABI waiver II a mental health model.

God knows I can relate;

Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized.

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. As you know Yes I was one of the victims. Every change DSS has made has hurt me so much that I had to get Office of Protection and Advocacy for Persons with Disabilities (OPA) involved in my ABI program, that's why I'm speaking up; If these changes are hurting me think about the other 450 people on the waiver and what it's doing to them. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized.

Click here: http://www.clearinghouse.net/detail.php?id=439&search=

My life today fact: I live and work a program 24/7, I have taken the advice to try and better myself and every time I have, the system has found a way to bring me down and leave me with no room to grow. I understand the advice people have given me and I have used it and have worked it all into my life on more than one occasion. Every time I put the tools in my "tool-box" (or should I say brain) in an attempt to better myself, the system has found a way of pulling me back down. I have kept in this "box" where I'm very limited on what I can do. I believe that my rehabilitation has been curtailed as a result.

I can't help but to be concerned about what the state is going to do to me next, all because I have a Traumatic Brain Injury. It's bad enough the state took and wasted 5 years of my life by putting me in prison, all because I am disabled and they did not want to help me. How can you keep putting your trust into a system that would rather lock you up and throw away the key then help the people who actually need it?

If our opinion really mattered we would not be here today fighting for the same issue(s) we have been fighting for since the beginning.

I encourage all legislators to please ask me questions on this issue so I could better school you on the importance of this matter!

My public and written testimony December 17 2015

Public Hearing,

RE: Replacing DSS Social Workers on Both ABI Waivers.

I am a brain injury survivor receiving services from the ABI Waiver; I am not here to attack anyone, but at the same time, I must ask that at THIS Meeting, no one from the Department of Social Services (herein referred to as DSS) attacks me, or dismisses what I have to say. I may not always say things perfectly, and it is easy for you to confuse me and upset me, so I am asking that everyone remembers I do have a brain injury, you can't see my injury, but it is there. I especially ask that Kathy Bruni not be allowed to attack me or my staff, I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt sorry for them because they work with me.

Many people in our community are appalled by that lack of understanding and the quick anger when we question anything she says, unfortunately, for brain injury survivors, this is who you have put in charge of our programs. Attacking or being cruel to me is also seen as an attack on the rest of the brain injury community and their families.

I am here today, because there is little respect within DSS Management for our community, and we do not want to yet again, have decisions made about our future without our input. At an informational meeting between families and DSS, we specifically requested that certain criteria be followed, should DSS put out a request for a private company to take over case management of the Waiver. That input, which seemed to be welcomed, was whole heartedly ignored by DSS, without any explanation to those they told they would listen too, and take into account what families had to say.

This is not a person centered program when convenient and state driven when inconvenience. This is completely unacceptable in our opinion! The ABI waiver for the brain injury community was build for us to survive, not for DSS to use it as witch hunt and play around with the lives of all these people. With that being said, we have to remember why the ABI Waiver was put into action in the first place!

I would also like to add in that I am very happy that my staff tells me everything about my case and keeps me informed it has saved me on so many different occasions from being taken advantage of especially by the DSS.

Take for an example - My service contract with DSS has been changed without my consent. DSS modified Cognitive Behavioral Program service and have redesigned my service hours for Cognitive Behavioral where it is not possible for me to use the entire budget allocated for the service. This change was done without my consent and it violates my signed service plan because my plan only has one service code available on the plan. DSS has informed my doctor that he must comply with the change. I have a big problem that DSS has put me in harm's way and placed me at risk by limiting my access to my entire budget as approved earlier this year. By doing so, DSS has placed me at-risk of re-institutionalization.

This is why the brain injury survivor family member and or his or her conservator, if any, needs to understand that they are the ones making the decisions not the program provider or DSS - they have the right to say no what your suggestion does not work for me. Department of Social Services will tell you one thing, but the laws say another. Especially when DSS changes or cut off your services without having a team meeting and then leaving up to the program provider to repay the services that you received. Yes every brain injury and case is different but the regulations stay the same no matter how it is justified; DSS may act like they are immune to our rights but they are not.

Sec. 17b-260a-1J2c Responsibilities of the Department of Social Services, DSS shall assign social work staff to execute the following ABI responsibilities: implement the approved service plan and coordinate services provided to the individual under the waiver.

Sec. 17b-260a-1G4 The service plan shall be developed by an interdisciplinary team that includes the individual, his or her conservator, if any, the DSS social worker assigned to coordinate the individual’s service plan, a neurophysiologist who is familiar with the individual, other clinical staff as needed, and any other person(s) of the individual’s choice.

When this happens the Department of Social Services has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. The Department of Social Services has a responsibility and an obligation to provide services until such time as any changes are made to the plan.

In addition, I have been told I by some politicians that I am not a good advocate and I hit "too hard"- I need to "play the game".

For those who say that, think what you would do if your beloved, precious child was hit by a car tomorrow and can no longer have the life and live the dreams you envisioned for them.

I ask each and every legislator who sat on the panel last year and casually asked Commissiomer Bremby if "waiver two would improve and increase" services to brain injury survivors to ask yourself if his simple "yes" answer would really be what you would accept and trust for your own, endangered child.

I can and should, call you out by name as in review of that Hearing, as on video on CTN, I am appalled - you may have the cushion of income and entitlements, but we do not. I am ashamed of what you did, and continue to do to brain injury survivors, veterans and disabled children and adults in this state.

Re: ABI Waiver Advisory Committee

This is a sorry excuse for an advisory board and no one is looking at the bigger picture! The advisory board and Connecticut Department of Social Services (herein referred to as DSS) had the nerve to say that our "opinion counts", but then they cut me off 1/4 of the way into my speech! How is it that our "opinion counts" when we are continually cut off and shut out? They only want to hear what is convent for them but when the facts are right in front of them they shut us out but still have the balls to say our opinion matters. I understand to a point where maybe us brain injury survivors tend to go off topic as to what they are looking for but DSS as well as all policy makers have to understand that these points we address are meaningful to us and our lives.

In 2014 - 2016 the community made the State and all of the policy makers very much aware that the ABI waiver II was a mistake and will not work for brain injury survivors! Now DSS is making changes to ABI waiver one (a brain injury rehabilitative model) trying to make it just like ABI waiver II a mental health model. Speaking for myself and the rest of the brain injury community we don't want that!

They tend to forget how hard it is to live in a community where we have to look every which way because we are not aware of what might happen and if we will wake up the next day to a program that helps us live our lives as normal as we can.

Every change DSS has made has hurt me so much that I had to get Office of Protection and Advocacy for Persons with Disabilities (OPA) involved in my ABI program, that's why I'm speaking up; If these changes are hurting me think about the other 450 people on the waiver and what it's doing to them. (see below)

I am a brain injury survivor receiving services from the ABI Waiver, It is easy to confuse me and upset me, so I am ask that everyone remember I do have a brain injury, you can't see my injury, but it is there.

On January 11th, I sent a letter to Commissioner Bremby after a meeting with my ABI team and my advocate from OPA, they suggested I make a formal complaint to Commissioner Bremby and Governor Dan Malloy.

I did not write the letter to attack anyone, but at the same time, I have the right to ensure that no one from the Department of Social Services attacks me, for this reason, I asked that Kathy Bruni no longer be allowed to attack me or my staff. I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt "sorry" for them because they work with me.

I did nothing to invite the attack from Mrs. Bruni except raise my concerns as an advocate for myself and other survivors. It is difficult to understand why Commissioner Bremby asked Ms. Bruni to represent brain injury survivors when she is repeatedly disrespectful to us. Can you imagine how painful her comments were to me?

Many people in our community are appalled by her lack of understanding and the quick anger when we question anything she says. She insults survivors, attempts to manipulate families, and tries to bully providers. She has done this repeatedly, and although family members, survivors and providers are afraid to say this out loud for fear of retribution by DSS and by Ms. Bruni, I am not.

I also told Commissioner Bremby that since Ms. Bruni attacked me publicly, she must apologize publicly.

In response, Commissioner Bremby wrote back to me and asked me to "move on" from the public attack that Mrs. Bruni initiated against me.

I do not appreciate that response from him as I and many others, saw how he responded when he did not like what was being said in a public Hearing in the Spring of 2014 about his statements. He was so angry that his staff had to stop him from going to the podium to confront the speaker. This is well documented from an independent video recording of the Hearing. DSS has, to this day, targeted that speaker by conducting an illegal audit, it is my understanding that they continue to pursue that individual to this day.

So, I find it hypocritical of DSS and Commissioner Bremby, to tell me to "move on" in my handling of my situation with Mrs. Bruni, as it clear DSS does not do the same.

In addition, it has come to my attention that Commissioner Bremby and DSS are manipulating the slots on the ABI Waiver. They are picking "winners" and "losers" by setting aside approximately 26 MFP slots that were not used last year, and they will have another 24 MFP slots, that will not be used this year - that is about 50 slots, that no one in the brain injury community can qualify for! And MFP will have 54 more slots added to the Waiver each year for the next three years! And then there are the DMHAS applicants who also get "reservations" at the restaurant - oh, sorry, I meant the Waiver, leaving many who have no services to languish without any real chance of obtaining a position on the ABI Waiver.

Now, in clear retribution for a denial of their proposal to outsource the Waiver, DSS has announced that due to the denial, "staff shortages" are so severe they will not be able to activate or process plans for the only 13 open slots left on the Waiver even when the money is available to do so.

I hope you are all aware of the loss of cognitive behavioral services to survivors, caused by the change made to that service, but I also realize this is getting long, and I hope you will ask myself or CTBISN to explain what has occurred and why all survivors on the Waiver have had their services reduced.

Please remember and think about the fact that DSS is toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and CT should be ashamed of the Commissioner and DSS!

I encourage this committee and all legislators to do what is right. Tell DSS they must provide the slots as written in the waiver application and provide survivors with a representative who treats us like human beings!

Thank you for your time,

I sent this out to governor Malloy asking him for Help what a surprise I got no response from him or his office.

Governor Malloy I am writing to you today for your help; My name is Craig Sears and I am a brain injury survivor receiving services from ABI Waiver one,

On January 11th (Please see attached file), I sent a letter to Commissioner Bremby after a meeting with my ABI team and my advocate from Protection and Advocacy, they suggested I make a formal complaint to Commissioner Bremby and Governor Dan Malloy.

I did not write the letter to attack anyone, but at the same time, I have the right to ensure that no one from the Department of Social Services attacks me, for this reason, I asked that Kathy Bruni no longer be allowed to attack me or my staff. I have been repeatedly disrespected by her, in meetings, hearings, and recently, when she pulled my staff aside and told them she felt "sorry" for them because they work with me. I did nothing to invite the attack from Mrs. Bruni except raise my concerns as an advocate for myself and other survivors. It is difficult to understand why Commissioner Bremby asked Ms. Bruni to represent brain injury survivors when she is repeatedly disrespectful to us. Can you imagine how painful her comments were to me?

Many people in our community are appalled by her lack of understanding and the quick anger when we question anything she says. She insults survivors, attempts to manipulate families, and tries to bully providers. She has done this repeatedly, and although family members, survivors and providers are afraid to say this out loud for fear of retribution by DSS and by Ms. Bruni, I am not.

I also told Commissioner Bremby that since Ms. Bruni attacked me publicly, she must apologize publicly. In response, Commissioner Bremby wrote back to me and asked me to "move on" from the public attack that Mrs. Bruni initiated against me.

I do not appreciate that response from him as I and many others, saw how he responded when he did not like what was being said in a public Hearing in the Spring of 2014 about his statements. He was so angry that his staff had to stop him from going to the podium to confront the speaker. This is well documented from an independent video recording of the Hearing. DSS has and to this day continues to target that speaker by conducting an illegal audit, it is my understanding that they continue to pursue that individual to this day. So, I find it hypocritical of DSS and Commissioner Bremby, to tell me to "move on" in my handling of my situation with Mrs. Bruni, as it clear DSS does not do the same.

In addition, it has come to my attention that Commissioner Bremby and DSS are manipulating the slots on the ABI Waiver. They are picking "winners" and "losers" by setting aside approximately 26 MFP slots that were not used last year, and they will have another 24 MFP slots, that will not be used this year - that is about 50 slots, that no one in the brain injury community can qualify for! And MFP will have 54 more slots added to the Waiver each year for the next three years! And then there are the DMHAS applicants who also get "reservations" on the Waiver, leaving many who have no services to languish without any real chance of obtaining a position on the ABI Waiver.

Now, in clear retribution for a denial of their proposal to outsource the Waiver, DSS has announced that due to the denial, "staff shortages" are so severe they will not be able to activate or process plans for the only 13 open slots left on the Waiver even when the money is available to do so. DSS must provide the slots as written in the waiver application and provide survivors with a representative who treats us like human beings!

I hope you are all aware of the loss of cognitive behavioral services to survivors, caused by the change made to that service, but I also realize this is getting long, and I hope you will ask myself or CTBISN to explain what has occurred and why all survivors on the Waiver have had their services reduced.

Please remember and think about the fact that DSS is toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and CT should be ashamed of the Commissioner and DSS!