From The Connecticut TBI Advisory Committee

From Craig Sears, Member
Survivor

To whom it may concern;

The Office of Protection and Advocacy for Persons with Disabilities provided me with the following, in her Fair Hearing statement.

 We the brain injury survivor’s of CT need your help. Would you please pass these laws on to your communication network and encourage their participation? In efforts to help enforce these laws and to get the word out to all the ABI Medicaid Waiver Program Provider’s. There are so many ways in which this can help us all.

My Name is Craig Sears and I am a survivor of Traumatic Brain Injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years in Connecticut. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors.

In the early 1990's I became a member of Connecticut's class action lawsuit working along with the Connecticut Brain Injury Association advocating for Connecticut's Acquired Brain Injury/Traumatic Brain Injury (ABI) Medicaid Waiver.

I am an independent man with a brain injury. I have been an active and effective advocate for the brain injury survivor community and a participant in the Acquired Brain Injury (ABI) Waiver Program for several years. Prior to obtaining waiver services, and as a result of a lack of community based supports, I was imprisoned and institutionalized. It is my goal to continue to strive for independence with appropriate supports, and to continue my advocacy efforts for other survivors. With these goals in mind my ABI Waiver Service plan was developed in a truly person-centered cooperative team approach. My specific needs and goals were addressed through the design of a unique employment support program, and structured services that address my needs.

After an annual review, my current ABI Waiver service plan was approved, dated to commence May of 2009, and was signed by two Department of Social Service (DSS) social workers, who at the time were Carolyn Wright, my former social worker, and Victor Estay, my current social worker, and social work supervisor, Gary Vertula. I recently issued to DSS a complaint about an approved ABI Waiver provider that was not meeting my needs. The provider as well as I agreed to part ways, leaving me without services. This service lapse should have been temporary; however, through time delays and a refusal to authorize both service provision and payment to an approved provider selected by myself, DSS has essentially suspended all of my ABI Waiver services without a formal notice, and without good cause. Despite having a current service plan that was approved by DSS, I was without any services since August 29, 2009.

Sec. 17b-260a-1I, Individuals who are eligible for ABI services shall be given free choice of all qualified providers of each service included in his or her plan of care. When I exercised this right to choice, DSS refused to authorize service provision and payment to an alternate DSS/ Allied approved provider of his choice, resulting in a complete absence of services for Mr. Sears.  Sec. 17b-260a-1J7 states that it is the responsibility of the Department to pay for approved ABI waiver services delivered by qualified providers through its fiduciary agent on behalf of the individual.

While the Department of Social Service may argue that a review of my service plan is necessary, additional evaluations are requested, etc., it cannot hold my services in suspense while these decisions are made by my team. I had a current DSS approved ABI Waiver service plan. The Department of Social Service 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 Department of Social Service, The 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, the Department of Social Service 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, 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 of Social Service 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 requested the immediate re-instatement of my ABI Waiver plan, as written. By withholding both the authorization to provide services and payment, to an authorized provider, DSS has placed me at risk of re-institutionalization, has halted my means of financial self-support, has left me without the ability to meet my own basic needs, and has neglected to support me in the least restricted environment available and stricted environment available.

2012 was no different; during the months of June or July I have an Annual Review State Team Meeting to evaluate my disability. On more than one occasion, Connecticut Department of Social Services continues to try to take my services away from me by cutting my hours back or trying to remove me from the program. As well as threatening me and stating that I am not compliant with the program because I won’t allow them in my residences. According to Dr. T. M. A., PhD., M. S., MBA clients on the ABI Waiver are not required to allow DSS to do home visits; if the client refuses a home visit that's fine. There are no consequences for not allowing a home visit.

Each year the Department of Social Service makes me sign a blank waiver agreement page without a completed service plan attached. According to Dr. T. M. A., PhD., M. S., MBA, One, it's unethical; especially when the worker has threatened to unilaterally change the plan without client’s involvement. Two, the Department of Social Service is billing clients for a co pay that is not documented in the plan. They are saying that clients sign off and understand the terms but they don't review the document. A month before my team meeting I received a call from my ABI Medicaid Waiver doctor, who had previously received a call from J.D at Bridgeport Department of Social Service, (who mind you is a supervisor) explaining to me my services were going to be lowered, and that DSS was going to try and use my program against me; all because I will ‘NOT’ allow them into my residence. This is the way they are getting the doctors to sign off on it and allowing them to take advantage. I had to have the Office of Protection and Advocacy for Persons with Disabilities at my team meeting like I have had to do in the past years, because my services are always being threatened.

 Two weeks after my Annual Review State team meeting, I had to call Allied Community Resources because I had been trying to get a hold of the Department of Social Services to try and get a copy of my ABI wavier plan and I was not getting any reply back from DSS. Come to find out that there actually were changes made to my plan. Without me/ABI team knowing anything about it!

This was done without an ABI Waiver team meeting, and in absence of me, my appointed advocate, and a neurophysiologist familiar with me.

Only after sending out an email and calling the “Office of Protection and Advocacy for Persons with Disabilities” and my ABI waiver Dr. about this, saying that I did not agree to that change in my plan, attaching the Department of Social Service and Sec. 17b-260a-1G4 on the email.

Only then the Department of Social Service called me saying that they were going to send me a new ABI Waiver service plan to sign saying DSS is changing it back to the way it was, without any changes.

 The ABI Waiver program is a federal program. The states are program providers for the government. Most requirements the state try to impose on us are NOT mandated in the plan.

When it’s brought to light they do their best to justify it!!

Fortunately I am a strong advocate for myself and after many phone calls, including to my Congressman’s office, I was able to have them reinstate my services – but not without cost to me as I went for so long without getting the services I needed. It also brought to my attention the sad state of the system as it currently exists – it is designed to take advantage of people with disabilities. Another person with a TBI in my shoes would likely not have had the ability to advocate for themselves as I did, and without services they would not have anybody else willing to do it on their behalf. This is a very disturbing situation and it shows how easy it is for the state of Connecticut Department of Social Service to take advantage of someone like me.

Why aren’t these laws being enforced?

Why is it that ABI Medicaid Waiver Program Provider’s don’t know about these laws?

http://www.ct.gov/dss/cwp/view.asp?a=2353&q=316512

To all U.S States with ABI Medicaid waiver Services what have you done to ensure that the same thing is NOT happening in your state?