A voice for all those that don't have one

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

Kathy Bruni Manager, Alternate Care Unit Department of Social Services is clearly the wrong person to represent our community. She insults survivors, she attempts to manipulate families, and she attempts to bully providers.
For more info click on the link below - CT Brain Injury Support Network video playlist
https://www.youtube.com/playlist?list=PLb0H4ueaYYBjmIKhH_UJa-SoPnGisOgiF

A simple guide to starting a local brain injury support group

What is a support group? Do I need one?

A support group offers the opportunity to share information and to support one another in an environment of empathy and understanding. It is often from others in like situations that the best solutions to problems can be found. Difficulties and emotions can be discussed freely without judgment, and new friendships can be forged.

Often after an illness or injury, getting on with life is not as simple as one would imagine, especially if that injury or illness leaves the individual with life-long impairments. This is especially true with brain injury. Both the individual and the family often struggle to adjust to the life changes that result from the brain injury. Getting information and services can often be a maze of confusing and conflicting situations, which can lead to frustration.

It is not uncommon for friends to disengage and for extended family to become less involved in day-to-day activities. The family and the individual with the injury can become more and more isolated. As social contacts dwindle, so does the opportunity to interact with others, and there are few outlets for dealing with the emotional aspects of lifestyle changes created by the illness or injury. Questions often remain unanswered, and the feeling of being alone in the situation intensifies. If this describes you and/or your family, you may benefit from a support group. Individuals often want education or would like to educate others about brain injury. Support group members can work together to educate the community on brain injury issues.

I need support: how do I find a support group?

In some areas there are established brain injury support groups, but small towns and rural areas are frequently less likely to have a local group. It may be necessary to look in the nearest city to locate the group closest to where you live. Local groups often meet at hospitals, churches or other public facilities, and in some cases in private homes.

Information on existing brain injury support groups in your area can be obtained from the Brain Injury Association in your state.

If a support group is available, it is important to realize that members’ schedules and attendance may vary. It is wise to attend a support group several times to determine its usefulness to you. If there is more than one support group available, it is recommended that you attend each in order to determine the best fit for your needs.

What do I do if there is no support group available?

There are many support groups that exist today because survivors and family members saw the need in their own community and became instrumental in forming one. Initially this may seem an overwhelming task. Starting a support group does require effort and determination, but it can be a very rewarding experience that will benefit all who participate in the forming of a local group. There is no set formula for establishing a successful group, because each community differs in many ways, and these differences can greatly affect the steps necessary to form a group.

Does our community need a support group?

If so, how do I start one?

The first step in forming a support group is to determine the need. A need is present when two or more persons would benefit from sharing information and empathy. Almost everyone knows or knows of someone who has sustained a brain injury. Ask friends and relatives if they know of persons who may be interested. People in need of support may travel relatively long distances to participate in a group, so do not limit your exploration to just your own neighborhood.

Once you have compiled a list of people who may be interested in the support group, contact the persons you have learned about or ask that they contact you. Some of those you contact may express an interest in helping get the group started. If even one other person expresses interest, you have established that there is a need.

With the need established, and the first few participants lined up, you are well on your way to becoming an active support group. It is time to start putting the elements in place to make it a reality. Encourage those who are willing to help and share the responsibility. At this point you may want to schedule a planning meeting to determine what steps need to be taken and who will assume responsibility for each step, such as locating a meeting space, refreshment donations and determining a meeting day and time.

It is important to remember that support groups vary greatly from one to another. Each group will form its own unique characteristics as it takes shape, so encourage others to offer ideas and perspectives.

Finding a location for the support group meetings: Where do we look?

Finding a location for the group to meet is the next step in forming the support group. While it is impossible to estimate what participation level your group will reach, it is best to assume that it will grow. Finding a location that will accommodate growth is important. It is usually not difficult to find a facility or organization that will offer free meeting space. Some will even provide refreshments.

Many hospitals welcome the opportunity to participate in programs that benefit the communities they serve. Wheelchair accessibility and being easy to locate are also important factors to consider. Hospitals are easily identified in the community, which makes them good meeting locations if they are willing to provide space. Other options include local churches or civic organizations that may have a meeting room that could accommodate the support group meetings.

After identifying several possible meeting sites, you will need to contact those facilities to determine the best person within the organization to talk to about facility use. Request a meeting to discuss the possibility of allowing your group to meet at their facility. Do not jump at the first offer of space unless it totally meets your needs, and do not get discouraged if some of the facilities you contact are uninterested.

We need to publicize: How do we let people know about the support group?

One of the most important steps in the process of starting a group is to identify ways to get the information to those who may be interested. Following are some suggestions to help advertise your support group.

• Contact the media. This should include not only your town or county, but those surrounding it as well. Media can include newspapers, radio, television and in some cases tabloid-type publications. Contact each media source, give them the information about the support group and request that it is included with their public service or community events announcements. If possible, try to get a feature article about the start-up of the group. A good way to do this is by contacting the person in charge of health reporting and scheduling a time when you can meet with them to share information on your plans. Include facts about brain injury so the 3 media will understand the importance of this group. Be sure that each reference to the group contains the correct contact information as well as meeting locations and dates if that has been determined.

• Notify professionals in your area of your intent to start a support group. Professionals can include physicians, therapists, nursing agencies and health and human service providers and organizations. You can contact these professionals by writing a letter and stating the intent to establish the support group, the purpose of the group and the location of the meetings, if that has been determined. Ask that they refer any patients who may benefit from the group. Again, be sure to include complete contact information.

• Notify churches or civic organizations to request that the information be included in their newsletter or bulletin. Again be sure to include complete details and contact information.

• Contact your state Brain Injury Association to notify them of your plans to form the new brain injury support group and ask them to provide information about the group to contacts in the local area. If they have a publication, you can request that the support group information be included in the next edition and that your information be filed for referral purposes as well as placed on their Web site.

• Do not be disappointed if you hear from only a few individuals initially. As long as you and one or two family members or survivors are interested, you have the basis for building a support group. Many of the existing groups began with three or less participants and have grown to large groups.

• Organization is important at this stage. Create a list from all of the contacts you receive so that when the first meeting is scheduled you will be able to contact those who expressed interest.

• Start a mailing and phone contact list that you can add to as you receive calls from those who are interested. Refer to page 5 for an example of a contact log. Information needs to be organized and stored together in one location so that it is readily available when you need to add to the listings. Using a notebook is recommended to organize the information and make it readily accessible.

• When you are contacted by a person who is interested in the group you should ask questions that will help you understand any specific needs of the caller, such as what meeting times would be best, special interest information and whether they would be able to help organize the group. Make sure that the contact information is complete so that you can contact them.

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

___________________

___________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Support group contact log

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Name: ________________________________

Address: ______________________________

City/State: _______________ Zip: ________

Email: ________________________________

I would like to help organize the group:

• Yes or No

Other information:

______________________________________

______________________________________

Home phone: __________________________

Cell phone: ____________________________

Preferred meeting schedule:

Day: ______________ Time: _____________

Interest: o Family member

• Survivor

• Professional

Special interest:

______________________________________

Planning and scheduling the first meeting: How do I contact people?

After you have made all of the initial contacts, found a location for your meeting and created a mailing list of those who expressed interest, you are ready to schedule the first meeting of the support group.

Contact the facility where the meeting will be held and schedule a mutually agreeable date and time for the meeting. It would be best to choose a time when most of the individuals who expressed interest could attend.

Try to avoid times where traffic and other issues could keep people from attending. Once there is an established date and time for the meeting, you must notify those who have expressed interest in attending. Contact those individuals who have expressed interest by sending a notice to those on the mailing list you have developed. The notice should include meeting time, meeting location and address and a contact name and phone number. If a speaker is scheduled, the speaker’s name and the topic to be addressed should also be included. This may be followed up by a phone call to encourage participation. Contact the local news media and request that the meeting information be included in their community calendar or upcoming events listing. Most local newspapers, radio stations, TV stations and cable companies offer this as a public service with no charge. Also contact local churches, healthcare providers and civic organizations and give them the meeting information.

Refer to page 7 for a meeting preparation checklist.

The first meeting is scheduled: How should it be conducted?

The first meeting should be an informational meeting that allows for introductions of the individuals who attend and explores the needs of the participants. Keep in mind that a support group will be defined by the dynamics of the individual members. As the organizer or facilitator, you will need to take notes and listen carefully to the ideas and issues discussed by others. This will help you steer future meetings toward fulfilling those needs. Allow the group to develop naturally so that it will meet the needs of the participants.

Meeting preparation checklist

Meeting location: __________________________________

Date: ________________________ Time: _________________

• Media notified

• Reminder cards mailed

• Phone contacts made

• Refreshments arranged

• Speaker confirmed (if applicable)

• Name: ____________________ Phone: ___________________

• Meeting materials prepared:

• Name tags o Note cards

• Pens o Paper

• Handouts and other program materials

Notes:

_________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

As the group develops, encourage ownership of the group by the members by assigning them responsibilities. As the primary organizer, be prepared to lead and facilitate the meeting. The following tips are helpful when organizing the group.

• It is important to arrive early and have refreshments set out and seating arranged. If possible, arrange seating in a circle or around a table to encourage interaction. Having these chores out of the way will allow you to be free to greet people as they arrive. Refer to page 10 for a sample sign in sheet.

• As people arrive ask them to sign the sign-in sheet and point out the refreshments. Encourage them to serve themselves and to make themselves comfortable. Introduce persons visiting for the first time to those group members. This will encourage conversation.

• Name tags should be used so that you will be able to address each person by name when talking to them or making introductions. They also encourage group members to become acquainted and create a sense of belonging, which is essential in a support group.

• Have any handouts or materials prepared in advance of the meeting. They can be placed on each seat in advance so early arrivals can review them. It is important to remember that you are drawing together strangers and that each person has a different comfort zone. Some will socialize immediately while others will sit quietly and look through any available materials. Allow at least 10 to 15 minutes for people to arrive and socialize if they wish.

• Open the meeting by introducing yourself to the group and giving a brief personal overview. It is appropriate, and necessary, that you share openly and honestly whatever life situations that have led you to start the group. This may serve as an icebreaker and make those in the group more comfortable in sharing their own stories. It is important that group participants feel comfortable sharing their information with each other. Ask that the information shared within the group be treated as private and confidential. Some individuals will feel more comfortable sharing information if they understand it will not be discussed outside the meeting.

• Ask each participant to briefly share his/her story with the group if they wish. Do not pressure those who seem reluctant to share information. Each person must be allowed to participate within his/her own comfort zone.

• When preparing the agenda for the meeting, schedule time at the end of the meeting for the group to socialize. This will give individuals an opportunity to discuss individual issues with the speaker and the other group members.

• Allow 10 to 15 minutes before the time scheduled for socializing, start bringing the meeting to a close. Thank the group for sharing, give your contact information to each person and make sure everyone has placed their contact information on the sign-in sheet. Give the group the date, time and location for the next meeting (if one has been planned) and remind them that the information on the sign-in sheet will be used to notify people of the next meeting.

The first meeting may continue after you have closed it. Encourage social interaction and allow people to leave at their own pace, Make yourself available for questions.

Be prepared for some people to become emotional. This may be the first opportunity some have had to share their experiences after brain injury. Allow time for composure if individuals become emotional and tearful. It is recommended to have tissues available. It is important that each person be given a chance to speak. Allow others to empathize with the emotional participant and then guide the meeting back to the agenda. After the first meeting it is not necessary for each group member to share his/her story.

After those attending have shared their stories, it is time to start to develop the group goals and to establish what those present hope to gain from attending the group. This can be determined by a combination of a questionnaire and discussion. Many issues are similar, while some of the group may have some unusual and specific needs. It is important to include all issues even if it applies to one person. Inclusion is what makes a support group successful.

A questionnaire may help start conversation and give the group organizer a clear idea of what types of needs are most prevalent in the group. In addition, it provides information on members interested in taking on a leadership role with the group. Following are examples of a sign-in sheet and a sample questionnaire. The questionnaire can be filled out during the first meeting. An open discussion of the answers can be helpful in identifying common concerns and interest. Refer to page 11 for a sample questionnaire.

We now have a support group: How do we keep it going?

Just as starting a support group takes work and organization, so does keeping it going. Some of the most important things to remember are:

As long as two people attend, you have a support group.

Keep the meeting date and time consistent each month.

It is important to plan meetings well in advance and to notify everyone on the mailing list as well as the local media.

Encourage group participants to decide on speakers and program content.

Share responsibility. Ask others to participate in the meetings by providing refreshments and planning other activities.

Brain injury support group sign-in sheet

Date: _____________________

Name Address Contact information

________________________ _________________________ _____________ /__________ Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Name Address Contact information

________________________ _________________________ _____________ /__________

Street Home phone / Cell phone

________________________

_________________________ ________________________

City State Zip Email address

Brain injury support group questionnaire

Name: (optional) _______________________ Phone number: ________________________

Address: ______________________________ City/State: __________________ Zip: _____

What do you feel are the most frustrating things that you are currently dealing with?

_________________________________________________________

__________________________________________________________

Do you feel that services for individuals with brain injury are adequate?

• Yes or No please explain why:

________________________________________________________

Are you and your family getting the services you need?

• Yes or No what services do you need that you have not been able to find?

__________________________________________________________

__________________________________________________________

What do you hope to gain from participating in a support group?

__________________________________________________________

__________________________________________________________

> What type of speakers or other information would most benefit you?

__________________________________________________________

__________________________________________________________

Do you feel that the time and location of the meeting is convenient?

• Yes or No how often would you like the group to meet?

__________________________________________________________

Would you be interested in helping lead the group or helping with future meetings and events?

• Yes or No if yes, how will you be able to help?

__________________________________________________________

__________________________________________________________

Comments:

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

__________________________________________________________

The support group needs a sponsor: Where do we look for help?

Even with a small local support group there can be some cost. Postage, the cost of copying handout materials and phone calls can add up over time. Unfortunately, many of the people who attend support groups deal with fixed or limited incomes and are unable to contribute to these expenses. Finding a sponsor for the group may be the answer, and may be easier than you think. Examples of possible sponsors include hospitals, human service providers, health organizations, civic clubs, etc. Asking for donated services is one way to gain the financial assistance for your support group, as well as asking for cash donations. The first step in this process is to make a list of the expense items and match each one to a list of businesses and organizations within your community. Approach each with a written description of your support group and its goals along with a request for the specific items or services that you need. Below are some examples of community supports:

Churches or businesses, as community outreach, can offer the use of copy machines and can include support group mail-outs in their postage budgets.

Grocery stores can participate by donating refreshments for meetings.

Local physicians, medical personnel and community organizations can participate by donating literature that would interest the group.

Businesses can be asked to assist by sponsoring special outings or sponsoring events that the group can attend.

Local entertainment, such as theaters, sport teams and other public venues, may be approached for free admission for group members. Maintaining a treasury may not be necessary in the early stages of forming a group. However, it may be something to look at in the future. Many groups use the natural supports within the community. If the group receives cash donations, keep records and receipts of what the money was used for.

The future of your group

If you have put the basics of this guide into action, you now have a functioning support group within your community. As your efforts reach others, and your group grows, it is important to remember the principal reason for the support group. We will end this book the same as it began, by reminding you of why you formed the group. A support group offers the opportunity to share information and to support one another in an environment of empathy and understanding. It is often from others in like situations that the best solutions to problems can be found. Difficulties and emotions can be discussed freely without judgment and new friendships can be forged.

For additional information about brain injury, or support groups in your area, contact your state Brain Injury Association in your state.

“Things work out best for those who make the best out of the way things work out!”

Health and Human Services testimony

Regarding the outsourcing of Case Management

ABI and ABI II Waiver Amendment Re-submittal and Hearing.

My name is Craig Sears I am brain injury survivor receiving services from the ABI waiver; I am here today regarding the outsourcing of Case Management.

1. The program is a Person-Centered Program and if DSS places a member on my team that I cannot choose or fire the Department of Social Services will have taken away my authority to hire and fire which is a fundamental feature of the program.

1. At present I choose all members of my team who cost against my budget including the doctor, agency providers or independent providers

2. If the Department of Social Services places a Case Manager on my team and that means that I cannot hire a Case manager in the future if I need that service this would limit my freedom that I have at this time

1. At this time, If I needed a Case Manager today I could interview as many people as I like and hire whom I choose

2. I would have the responsibility of hiring and firing that individuals

3. What DSS is doing takes away my ability to choose who I want as a provider

3. I am opposed to the outsourcing of the waiver to a community-based agency because I believe that the brain injury is so unique and requires attention of well-trained social worker. That said, I am very opposed to DSS using my budget to hire social workers to administer the program while at the same time assigning someone to my team that I have no authority to manage.

4. DSS decides when it is convenient for the program to be Person-Centered. In no way is what is being proposed Person-Centered and I ask you to reject the proposal.

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

This is NOT a budget issue with DSS!

To. Roderick L. Bremby | Commissioner
Connecticut Department of Social Services | Office of the Commissioner

Meeting request

Re: Abusing survivors and holding them hostage until DSS gets their ransom!! - Social Services refusing to fill treatment slots

To whom it may concern. My name is Craig Sears and I am a Brain Injury Survivor Advocate Board Member CT Brain Injury Support Network. I am asking for a meeting with Roderick L. Bremby Commissioner so that I/we can educate the Department of Social Services on what and how DSS is taking advantage and discriminating against brain injury survivors.

I can't begin to say how bad I feel for these people all I can do is use what Connecticut did to me to try and help others I hope you can use this in some way to stop this from happening.

Holding brain injury survivors hostage, unless and until Department of Social Services get what they want from CT Legislators puts vulnerable survivors at great risk. DSS is demanding legislators approve outsourcing the Acquired Brain Injury Waiver, before they give services to those on the wait list. This is now not a budget issue, as some slots have recently become funded, but department of Social Services still refuses to fill them and added the language about being "short staffed", only after legislators denied their request to outsource the waiver. At the same time DSS is suddenly too "short staffed" to properly care for brain injury survivors, they are asking to have the Autism Waiver added to their agency, meaning the DSS overworked staff that cannot care for brain injury survivors is now going to take on yet another fragile and vulnerable population?

I don’t know what tomorrow’s going to bring for me, but I do know all too well as a brain injury survivor what life is like with no help. I can relate 110% to what social services is doing to others I beg you please stop this from happening.

This is my personal experience about what happens when brain injury goes untreated.

It was July 9, 1987. It was a beautiful Connecticut summer afternoon and I was out riding my motorcycle. I had just turned 20, and had a lot going for me. I was making a very good life for myself. I had a great family and a good job in construction and as a part-time mechanic. I was making good money for a kid my age. I had a great girlfriend and lots of friends. I had two cars and lived in a nice condo right on the water. I was living the American Dream. I'll leave that up to you to fill it in because I had everything a man could have possibly wanted — and in a heartbeat it was all gone.

As I was coming up over a hill, there was a car going the wrong way and I was unable to stop. We collided. I was thrown an estimated 40 feet into on-coming traffic. I landed headfirst into a curb.

I have no memory of the next six months. That period of time is a black hole in my life. I was in and out of a coma, undergoing multiple surgeries. From there I was transferred to a rehabilitation center. While I was in this treatment center, I had to relearn everything about life down to using the bathroom on my own. There, I was fighting against the physical pain and the pain of not knowing who I was. Then one day they decided to transfer me out to a locked, mental health ward in Bridgeport, Connecticut where I was constantly put in four-point restraints and forcefully drugged. (I was told there were no other services offered for people with traumatic brain injury.) After being in the mental health ward for nine months, I began to regain some memory and I knew this wasn't for me! Keep in mind traumatic brain injury is not a mental illness.

So I started to call around to town officials and state government offices to ask them how to get out of the ward. The ward was holding me against my will and I knew I didn't need to be there. I did know that I needed help in other areas because of my brain injury but I also knew I was not mentally ill. After getting through to the Connecticut Governor's office and sharing my story with one of his representatives, they got a hold of the hospital and set up a jury room filled with my family, doctors, and a representative from the state office. All the while, I was saying that I wanted out of the ward. In order to be taken out of there, I had to have a place to go and my only option was my family and I did not want to burden them with the pain that I was going through.

I ended up in a one-room efficiency apartment. At the time, the building was a major drug trafficking building with rats, roaches, and prostitutes. There was no other place for me to go, no help at all; my family had tried everything to get me help. There were no group homes, no programs, no services offered, nothing. I still did not know how to do the basic functions of life so I would wander the streets trying to regain some kind of memory. I would watch other people to see what they were doing, how they were acting in order to regain memory of anything that I knew how to do before the accident. I knew at that time this was not who I was.

Things began to improve. My mother got me a weight set, my father bought me a bicycle, and I started volunteering at a local hospital. At the hospital, I could go into the physical therapy rooms and I could watch what they were doing for rehabilitation. Then I would go back home at night to do the exercises on my own in order to regain my strength and abilities. But I overworked myself physically so as time went on, I found that I was spitting out blood and my body was in terrible pain. A touch hurt. I didn't know better, I didn't realize I was harming myself rather than helping and improving. My mother had to take me many times to the hospital because I couldn't walk or move.

Socially, things were awkward. One day after volunteering I was leaving the hospital and I saw a lady fall to the floor. My instincts were to grab a wheelchair and put her in it and run to the emergency department. Because I had ran to the emergency department, they called me the next day and told me not to return. I was crushed. There was a lot of other pain from being turned away … people always assumed that I was drinking or using drugs because I would slur my words and my equilibrium was off because of my TBI. It became harder and harder to find where I fit in. After remembering little things from watching other people and always trying to look at the good things in life, I started wondering what it would be like to get out of where I was living in Bridgeport. I asked my family for help. They got me a different apartment. Everytime I moved into a different place, I'd think it would help me by being in a better environment. I would temporarily feel like things were changing.

But I had learned a wrong way of thinking to solve my problems. I started drinking and getting into drugs. I thought it would help me cope with the pain by letting me forget all that I went through. Everything I had fought for, I started to lose. I found myself alone even more and getting into trouble, ending up in numerous mental health facilities all over the state because there is no help for TBI survivors. I continued to spiral down, and soon I wound up on the streets and homeless, and not long after that, in prison

I had several brushes with the law. While I struggled daily to live with my brain injury, I ended up with several minor arrests for public urination and things of that sort. The state of Connecticut did find a way to use my injury against me. It was a probation violation, for which I would ultimately receive a five-year prison term. I spent five years locked up in a level-four high-security prison where I received absolutely no help for my disabilities. I was locked in an 8'x 10' cell twenty-four hours a day surrounded by gang members, rapists, killers, and child molesters. All for peeing in a garage. Does that sound like justice to you? The police, the court, and the judge didn't know, care, or consider my TBI. And once behind bars, neither did the warden. I served five-years for what other people would sleep off overnight in the local lock-up, and then clear up with a brief court appearance. Again, there were no programs, no early release, or time off for good behavior. TBI or not, I served every measure of that sentence to the fullest. Common courtesy prevents me from sharing here. I will leave it up to your imagination to fill in the blanks. It was hell.

Somehow, I survived and was released in 2003. Life though continues to be a struggle. I have few options, and fewer choices. I am very uncertain of my future. I want to be hopeful, but I know all too well how quickly good can go bad in life. So I try my best to help those with TBI get the help we need.

In 1990 I became a member of Connecticut's class action lawsuit working along with the Connecticut Traumatic Brain Injury Association advocating for Connecticut's Acquired Brain Injury (ABI) Medicaid Waiver, implemented in 1998. This waiver allows the state to permit organizations to provide non-medical services to people with ABI enabling them to live in the community outside of nursing homes and institutions. No two people are exactly alike, just as no two brain injuries are exactly alike.

After nearly 20 years of waiting and being turned down, I was released in 2003 when I turned to a local Congressman's office for help. But I needed a place to call home and within two months, they cut through the red tape and I finally received recognition of my TBI. I was accepted into a HUD subsidized housing unit.

From 2003 to 2014 my life made a complete 180° turn - life was great. I started getting my independence back - My life now has now made a 360° turn because of the way governor Malloy and DSS Commissioner Roderick L. Bremby are taking advantage & discriminating against people with disabilities. Every day I wake up wondering if today is the day that I'm forced back into an institution. 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.

Let's stick together and start fighting back with the rights we are given

Re: Senate bill 17

Governor Malloy's proposal to eliminate the legislative process and eliminate Public Hearings for changes to the ABI Waiver, as well as all other Waivers.

This proposal appears in section 32 of the Governor's bill S 17 which would repeal § 17b-8. This is a critical protection for brain injury survivors and MANY others. The fact that Waivers and Amendments to those Waivers, have to go before the committees of cognizance (Appropriations and Human Services) serves as an important moderating force, when DSS proposes changes that are harmful to Waiver participants.

Public and written testimony.

My name is Craig Sears I am a brain injury survivor receiving services from the ABI waiver; I am here today in regards to Governor Malloy's proposal to eliminate the legislative process and stop holding Public Hearings for changes to the ABI Waiver, as well as all other Waivers in CT. I can't begin to tell you how wrong this proposal is to the citizens of Connecticut - this proposal is nothing but in direct response to the legislators denial of the proposal to outsource the ABI Waiver at the Public Hearing in December! It is clear, that if this proposal was passed it would only be because governor Malloy doesn't want the citizens of Connecticut to know that they are being taken advantage of and being discriminated against.

If the public hearings are taken away, where are we to go when there's a problem? In December at the last public hearing, I spoke on the fact that every change DSS has made to my ABI waiver has hurt me so much that I had to get the office of protection and advocacy for persons with disabilities involved in my last team meeting. Which makes it a perfect example of the type of errors that can occur if there are not multiple eyes looking at these issues. And yes, I was able to have my services reinstated because of the sections in DSS regulations I spoke about on December 17. (see below). Think about it, DSS went through the committees to allow them to modify the waiver to change prevocational and cognitive behavioral. The committees agreed! All ABI Waiver clients lost services with their doctors due to the CBP change.

For example, I had 8 hours at $83.22 = $665.76 But they increased the rate to $105.00. As a result I could only see my doctor 6.34 times per month in a face-to-face format. That is a loss of 21% of the service I had prior to the change. Now I have won a victory and every client will have to have their CBP budget increased by 21%. That is a cost that should be reviewed by Appropriations.

The loss in services should have been properly vetted by Human Services.

What about clients who are right against the budget cap and have no room for this increase in cost to CBP. Does this place their waiver at-risk? Does it open up the State to Claims or a Class Action Lawsuit since a client who may be at his cap limit say $139,700.00 for Level 1 but had four hours per month of CBP at $332.99 now needs a monthly budget of $420.00 and for 12 months which is an increase of $1044.00 for the year and places the client over budget.

The admission by DSS that there is a service loss places the state in a vulnerable position and again, this change was done with the approval of Appropriations, Human Services, and DSS.

Governor Malloy and Commissioner Bremby I am ashamed of what you did, and continue to do to brain injury survivors, veterans and disabled children and adults in this state.

I am asking this committee and all legislators not to pass this ridiculous proposal for the good of the community.

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!

Craig Sears brain injury survivor

The irony is that I thought he could help me!

My response to a letter from Department of Social Services Commissioner Roderick L. Bremby.

Hi Commissioner Bremby,

I find it ironic that you ask me; to move beyond the public attack that Mrs. Bruni initiated against me.

Commissioner Bremby, you were criticized in a forum at the Legislative Office Building in the Spring of 2014 regarding how you would manage the "slots" on the ABI Waiver. You were so angry that you attempted to charge the podium and attack the person who was speaking at the time. Your staff had to restrain you from going back to the podium. There are a number of witnesses to this event and there was an individual hired to video record the events on that day, so your behavior at the event is well documented. Your department then targeted the speaker by conducting an audit of the provider and it is my understanding that you continue to pursue that individual to this day.

I find it hypocritical for you to critique my handling of my situation with Mrs. Bruni.

It is my understanding that public hearings allow individuals to voice dissenting opinions. Nevertheless, you chose the "low road" when you were critiqued.

I did nothing to invite the attack from Mrs. Bruni and I am a brain injury survivor. I am a member of the class of individuals that you have asked Mrs. Bruni to represent. Can you imagine how painful her comments are to me and how insulting she has been to the entire community by the statements she made?

Mrs. Bruni attacked me publicly. She must apologize publicly. Most importantly, Mrs. Bruni is clearly the wrong person to represent our community. She insults survivors, she attempts to manipulate families, and she attempts to bully providers.

In addition, it has come to my attention that you (Commissioner Bremby) are manipulating the slots on the ABI Waiver in exactly the manner as was anticipated at the hearing in the Spring of 2014. You are picking "winners" and "losers" by setting aside MFP slots that are not being used, providing preferential position to DMHAS applicants, and leaving those who are at home or in a nursing facility to languish without any real chance of obtaining a position on the ABI Waiver.

The DMHAS clients are receiving community services, MFP clients are receiving community services and applicants who are at home or in a nursing facility are not receiving community services and at this time have no real hope of ever securing a position on the waiver.

When I go to a store or any other place of business I am served on a "first come" "first served" basis.

You are toying with people's lives based on who saves the State of Connecticut the most money. It's wrong and you should be ashamed Commissioner!

I encourage you to do what is right. Provide the slots as you agreed to provide them in your waiver application and provide the survivors with a representative who treats us like human beings!

Thank you for your time,

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

Stop attacking brain injury survivors

Below is a copy of the e-mail that I sent to Commissioner Roderick L. Bremby along with copy's sent by certified mail to 55 Farmington Avenue Hartford, CT 06105 and to my human services advocate at OPA.

To Roderick L. Bremby
Commissioner
Department of Social Services
55 Farmington Avenue
Hartford, CT 06105

I'm putting this letter together because after my meeting with my ABI team at Bridgeport DSS which also included my human services advocate from OPA it was suggested that I put this letter together as a formal complaint to commissioner Bremby and governor Dan Malloys office also cc here.

My name is Craig Sears I am a brain injury survivor receiving services from the ABI Waiver; I am not writing this letter to attack anyone, but at the same time, I must ask that no one from the Department of Social Services 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.

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)"
Being a voice for all those that don't have one;
This constant harassment by Kathy Bruni isn't funny at all, it's insulting on so many levels. I do not go to these public meetings - 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. I consider brain injury survivors apart of my extended brain Injury 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.

That goes without saying 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.

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?

With that being said, Is Kathy Bruni Manager, Alternate Care Unit Department of Social Services. So arrogant that she thinks she knows better than the leading experts or does she just not care about people with disabilities? (Brain Injury)

I want a public face to face apology from Kathy Bruni at the next brain injury meeting held at the state capitol televised by CTN to myself and the rest of the brain injury community which includes my ILST staff that Kathy Bruni attacked at the advisory board meeting & CTBISN, family members and supporters! Because they were present on another occasion when Kathy Bruni attacked me; including removing Kathy Bruni from the waiver altogether! Making it impossible for her to have any contact with the brain injury community and our programs!

I do not like being attacked, harassed, or made fun of by state employees because I am disabled and I come to the table with facts.

(Governor Malloy and Commissioner Bremby)
• 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
Advocate
Board Member
CT Brain Injury Support Network

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
Advocate
Board Member
CT Brain Injury Support Network

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

Speaking Up For Brain Injury Survivors

Re: Dept. of Social Services DSS newest changes to the Acquired Brain Injury Waiver:

Appropriations & Human Services Committees Public Hearing & Meetings on Acquired Brain Injury ABI Medicaid Waiver Renewal & Amendments.
My comment about this and other issues we are facing,

My name is Craig Sears 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... In the 1990's I became a member of Connecticut's class action lawsuit advocating for Connecticut's Acquired Brain Injury ABI Medicaid Waiver, implemented in 1998. This waiver allows the state to permit organizations to provide non-medical services to people with Traumatic Brain Injury enabling them to live in the community outside of nursing homes and institutions. 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.

However, The State of Connecticut found a way of destroying this truly remarkable program and turning the clock back to a time where there was no help for brain injury survivors or their families. CT Brain Injury Support Network said it best this new Waiver is a HUGE step backwards for Brain Injury Survivors in Connecticut! And now, with even more devastating changes proposed, CT is continuing its efforts to dismantle a program that has been highly successful for more than 18 years! This is a stigma for our community as brain injury survivors have fought long and hard to receive treatment specific to our needs and outside of the endorsement and guidance of mental health treatment, because everyone with a brain injury is different and global interventions do not work with our population.

Wake up Connecticut, fact; universal services do not work for brain injury survivors... Traumatic Brain Injury TBI is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues. If the Department of Social Services and Office of Policy and Management do NOT understand this they should NOT be writing inappropriate Waiver programs!

You will not understand brain injury until it happens to you or when someone close to you has a concussion or a more serious brain injury, only then can you understand what's happening, and what Connecticut is doing people with Disabilities, with that being said;

It is pretty clear Connecticut either doesn’t care about people with disabilities, or Connecticut is so arrogant that they think they know better than the leading experts - brain Injury survivor’s, family members, advocates, professionals and supporters.

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

Helping each other :)

When people come together to help each other it can be an amazing example of how good mankind can really be in improving and helping their communities.

It was a great show yesterday on Citizens Television's Sandbox Chronicles with Gabor Kautzner OEF/OIF Outreach Counseling Tech New Haven Vet Center 291 South Lambert Road Orange CT, 06477 & Elaine Burns Parent of a Brain Injury Survivor & President of Connecticut Brain Injury Support Network & Craig Sears Brain Injury Survivor Advocate Board Member CTBISN & Stephanie Bukovcik Independent Living Skills Trainer.



If you are a member, supporter of CTBISN a brain injury survivor, caregiver, provider, family member or a parent of a brain injury survivor and are interested in the differences between abi waiver one and abi waiver II I suggest you watch these videos.

Especially if you are a state employee and need education on brain injury I highly recommend you watch these videos.

AN ACT CONCERNING THE MEDICAID WAIVER APPROVAL PROCESS

Proposed Bill No. 6155 the bill is intended to change/improve the method of notifying participants and providers when changes are made/proposed to the ABI Waiver.

This was my testimony on February 10th 2015 in Hartford Connecticut at the legislative office building for this very important bill.

My name is Craig Sears and I am a brain injury survivor receiving services on the ABI Waiver 1 Program. 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. Without the services of this truly remarkable program I would probably be in an institution in prison or dead!

I am here today in support of Bill No. 6155

Currently, the State of CT does not inform, in a timely manner, Participants and Providers when they make changes to my services. They also do not inform someone like me, who has a brain injury, of proposed changes in a manner that is accessible to me! Recently DSS made changes that directly impact my life and my staff - I only learned about the last Public Hearing two days before it occurred. The State of CT must stop treating me and other brain injury survivors in this manner!

I support the following: Notice of proposed changes at least two months prior to a Public Hearing, via email and snail mail to participants, conservators and providers.

2. Major changes should require a Public Forum prior to holding a Public Hearing to gauge the public response and to give Legislators time to gather further information if there is strong resistance.

3. Public Comments allowed during the first 30 days after notification of changes is sent out.

4. No less than a 10 day notice (email and snail mail) of Public Hearings on changes.

Although this is not a notification issue, I have to say that it is clear the department of social services is going to eliminate Independent Living Skills Training and replace them with recovery assistant - which is not a rehabilitative model.

Not to mention that ILSTs are the heart of the program for brain injury survivors and a very important teaching service.

If CT takes away the only teaching service for brain injury survivors you will see another class action lawsuit in CT because the service descriptions and mental health bias of ABI Waiver II is taken from the Mental Health model of services and are inappropriate for Brain Injury Survivors. I am not mentally disabled, but a proud brain injury survivor!

The changes coming from the implementation of ABI waiver II will force brain injury survivors into lesser quality services that put our lives in the community at great risk!

This is why Bill No. 6155 is so very import to all Participants and Providers that are involved in Medicaid Waiver Programs, please take my recommendations and include them in this Bill.

Update: 2/18/15 Bill No. 6155, regarding improving the way survivors, families and providers are notified by Dept. of Social Services of proposed changes to the Acquired Brain Injury Waiver passed in the Human Services Committee with full support from all the Legislators - Thank You!

Here’s a link to the Bill No. 6155: http://www.cga.ct.gov/2015/TOB/H/2015HB-06155-R00-HB.htm

Craig Sears Member, Survivor CT Brain Injury Support Network

Pure Arrogance

Re: State of Connecticut's ABI Waiver and the changes to this waiver

The State of Connecticut has written a new Waiver with the intent to give preferential treatment to disabled people who save the state the most money and discriminate against members of a specific brain injury population who do not save the state money. This is immoral and a significant civil rights violation.

This is the information I sent out to request a meeting with Lt. Governor Nancy Wyman on Jan 7 2015. Prior to this request, I as well as CTBISN had a meeting with her back in early 2014 before this law was passed. This is the same information Governor Dannel P. Malloy and Lt. Governor Nancy Wyman and Social Services Commissioner Roderick L. Bremby received at that time when they chose to ignore it. Now is the time where I need more answers then what people have been giving me. Before I, as well as others lose everything we have worked for!

My name is Craig Sears and I am a brain injury survivor receiving services on the ABI Waiver 1 Program. 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.

Today I'm writing about my own problems that I'm having with the State of Connecticut Department of Social Services concerning my ABI non-medical waiver plan that has been helping me to live in the community outside of nursing homes and institutions. I have five questions below that I need answered.

I, along with many other brain Injury survivor's, family members, advocates and supporters are deeply concerned about the new ABI Waiver. The new Waiver will have significant negative impacts on hundreds of brain injury survivors. ABI Waiver II will lead to significant harm, serious crisis and put the health and safety of brain injury survivors in CT at great risk.

ABI Waiver 1 was the first Medicaid-funded program in Connecticut that allows individuals with brain injuries to live in the community instead of institutions, and it does so while reducing state expenditures by providing services at an average of 75% of the cost of alternative institutional care AND receives approximately 50% reimbursement from the Federal government. Simply put, this truly remarkable Program has not only made an incredible difference in the lives of many families and survivors in Connecticut but has saved the State money!

The new Waiver is nothing but a vehicle to allow Department of Social Services to jump over people on the current wait list in order to provide services for people at the back of the wait list who will save the state more money. This unethical and immoral way of choosing who will receive services in CT is frightening for people of ALL disabilities. This means determining services is not based on need and the date of application for services; rather, CT can choose to create new methods to determine who gets life-changing services based on the calculation of how many dollars they will save CT.

ABI Waiver II was passed by State Legislators on March 28th 2014. This new Waiver is a HUGE step backwards for Brain Injury Survivors in Connecticut! This is a stigma for our community as brain injury survivors have fought long and hard to receive treatment specific to our needs and outside of the auspices of mental health treatment, because everyone with a brain injury is different and global interventions do not work with our population.

Traumatic Brain Injury (TBI) is separate and distinct from developmental and mental health diagnoses. Individuals with developmental disabilities and/or mental health issues may suffer a TBI. However, not all individuals with TBI have developmental or mental health issues. Finally, challenges and interventions implemented with survivors of TBI may be very different from those implemented with individuals with developmental disabilities, mental-health diagnoses and a dual-diagnosis of TBI and developmental disabilities and/or mental health issues.

There's a world of difference between someone with TBI and someone suffering from mental illness. If the Department of Social Services and Office of Policy and Management do NOT understand this they should NOT be writing inappropriate Waiver programs for brain injury survivors!

No matter how many public forms CT holds or how many times Connecticut changes the words of the new ABI Waiver, you cannot change the fact ABI waiver 1 was capped/closed it's still the same conclusion. The fact is that the service descriptions and mental health bias of ABI Waiver II is taken from the current Mental Health Waiver and are inappropriate for Brain Injury Survivors. Mental Health Waiver services are supportive/maintenance models with rehabilitative components of services provided by staff at local Mental Health Associations.

Questions:

1. Why did Connecticut balance the budget on the back of the disabled?
2. Why is Connecticut discriminating against brain injury survivors?
3. Why is Connecticut ignoring what brain injury survivors need and want?
4. Why did governor Dan Malloy lie to me and the state when he said that "we" (meaning both present and future brain injury survivors), are OK when we are not?

This will eventually mean, I as well as many others will end up back on the streets etc, because there will be no help for us. I don't know what tomorrow's going to bring for me, but I do know all too well as a brain injury survivor what life is like with no help. I do not want to go back to that cruel and unusual life on the streets or locked in an insane asylum or back in a prison cell for that matter.

So my last question is; what does Connecticut plan to do to fix this issue? But this time I'm asking to please have it in writing, because words mean nothing to me I need to have it in writing.

Craig Sears
Board Member, Survivor
Connecticut Traumatic Brain Injury Advisory Board
CT Brain Injury Support Network