Waiver 2 Judgment day

Appropriations & Human Services Committees Public Hearing & Meetings on a Proposed Amendment to the Acquired Brain Injury Medicaid Waivers,

Public Hearing,

RE: Replacing DSS Social Workers on Both ABI Waivers.

My public comment at that Hearing, as on video on CTN,

My name is Craig Sears 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 to what your suggestion does not work for me. Department of Social Services will tell you one thing, but the laws & regulations 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 laws & regulations stay the same no matter how it is justified. Sec. 17b-260a-1J7 states that it is the responsibility of DSS to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

Department of Social Services may act like they are immune to our rights but they are NOT , additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I have a current DSS approved ABI Waiver service plan. DSS has a responsibility and an obligation to provide me with these services until such time as any changes are made to my plan. Sec. 17b-260a-1J2c Responsibilities of the DSS, 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. Furthermore, DSS has overstepped its authority; it is the interdisciplinary team that makes determinations about the service plan. This was done without an ABI Waiver team meeting, and in absence of Me and my appointed advocate, and a neurophysiologist familiar with Me. 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 Department 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.

I did contact my human services advocate at P&A on this matter. They have accepted my case and are looking into it. They will be at my next team meeting to address this matter, if DSS ignores this I will ask for a fair hearing! If this is happening to you (I suggest you do the same! If they can do it for me, they can do for you because the system was not made to help just one person.)

The one and only way that a change is possible if enough people have become fed up. But if people don’t come forward it will continue. The only way we can grow by letting people know we exist and we are fighting for everyone. Day after day I get emails about the horrible things that Connecticut is doing to brain injury survivors. They need to be stopped; we have rights for a reason, but the State tramples all over them as if they are immune. We plan on doing everything we can so we can all help each other. And with enough people complaining about the wrong, we can bring this information to the media as well as the United States. Lets finally put a stop to this, all it takes is spreading the word so let’s stick together and start fighting back with the rights we are given.

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.

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