Alliance Committee Members

Peggy Burns Keener

Peggy Burns Keener, whose daughter suffered a traumatic brain injury in 1981, was one of the founders of the Brain Injury Association of Ohio.  In 1983, with help from the National Head Injury Foundation {now the Brain Injury association of America}, Ohio became an affiliate of the national organization.  She served as Vice President and then President of the State chapter as well as on the Board of Directors of the national group.  She was an organizer and presenter at the National Caregivers Conferences sponsored by BIAA in 2006 and 2009.

 

 

 

 

Jon Fishpaw

Jon Fishpaw is the former Board President of the Brain Injury Association of Ohio where he served in this capacity until 2010.  His affiliation with the Caregiver’s Alliance stems from his past board experience, which began shortly after his then infant child suffered an inflicted head injury. The culmination of his community service and advocacy efforts led to the passage of Ohio’s first shaken baby syndrome statute, “Claire’s Law,” named after his daughter.  

Jon currently serves as the Vice President of Advocacy & Government Relations at Catholic Health Partners, Ohio’s largest health system and the state’s fourth largest employer.
 

 

 

 

Jennifer Rucker

 

Jennifer Rucker is the spouse of a TBI and brain cancer survivor.  She is a mother of four children, a teacher, and the former BIAOH Community Support Network coordinator in Southeast Ohio.  She attended BIAA's 1st Caregivers Conference in Washington, D.C. and is a panelist speaker on caregiving at BIAOH'S annual conference.

 

 

 

 

 

Hollie Goldberg

I was a college sophomore when my brother, Gary, a college junior, had a serious car accident resulting in his ten day coma and traumatic brain injury.  This took place in 1972.  After the car accident, Gary was unable to return to college and was, frankly, very frustrated to find himself living back at home with his parents.  In Gary’s view, he was too old to be living with parents and he very much wanted to live on his own.  Over the next few decades, Gary, along with family help, accomplished many goals.  He received training in Cleveland from LEAP, a wonderful disabilities organization and he qualified for many public benefits including SSI, SSDI, Medicare, Medicaid, subsidized housing and other programs.  Gary is very comfortable allowing me to serve as his “advocate” and I serve as his authorized representative with all the public benefit programs.  My role as caregiver and sister is to try to manage all the benefits and to try to anticipate any problem areas.  Now that Gary is 60 and I am 59, we are beginning to imagine what life as a sister/caregiver and brother/care-receive might look like when we are in our 60’s, 70’s, and 80’s!  By the way, one of the most complicated aspects of being an “administrative” caregiver is managing the reporting requirements with Social Security since Gary works two mornings per week and is on Ohio’s Medicaid Buy-in For Workers with Disabilities program.  Even though wage reporting and advocacy in this area is burdensome, Gary’s job is one of the most fulfilling aspects of his life.  Gary and I live in two different cities, but we still communicate nearly every morning my phone. 

Dave Ritterbeck

My name is David Ritterbeck, I am 54 years old and live in Caldwell, Ohio. I am raising two grandchildren on my own, Destanie (my daughters child)　who is 13 years old and Coleman (my oldest son’s child) who is 12 years old. I have had custody of Destanie since she was 8 weeks old and Colemen since he was 13 weeks old. Coleman suffered a severe TBI (Traumatic Brain Injury) at 11 weeks old as a result of being shaken by his father (my oldest son).　Coleman’s dad spent five years in prison, which was the maximum penalty by law.　I don't believe that my son is some kind of monster, or that what he did was premeditated. Would Coleman have had a different outcome if my son would have been given information on shaken baby?

　 We were asked to care for Coleman when he was released from Children's Hospital, in Columbus, Ohio. Coleman was 13 weeks old, and I was given custody at that time. We were told that Coleman would be blind because of retinal hemorrhaging, and that he would never eat, walk, talk, know or do anything for himself. I say we because I was married to my second wife at that time. We separated in 2004 and have since gotten a divorce.

　 Nobody can prepare you for all the changes that come with caring for someone with a severe TBI. Almost everything changed in my life; my faith in God has grown. I am divorced for the second time; I quit my job at Detroit Diesel, after 16 plus years. There are people in and out of my home almost daily, from home health aides that help care for Coleman, to Nurses, Therapists, and Case managers. Coleman is 100% dependent and needs help doing everything, from dressing, eating, brushing his teeth, and the list goes on.

　 Coleman has special equipment needs. He requires a wheelchair, lifts and ramps in the home and in the van. He has a gait trainer or walker, standing frame, and a communication device, ECO-14.

　 Coleman attends the local public school Caldwell Elementary school,And he has an IEP. The school and I are growing with Coleman's needs. We live in a great community where Coleman is accepted, well know, and loved. I have in home help with Coleman two days per week and sometimes on a weekend. However I personally believe that it is a must to have out of home Respite, This is not just for you it is also good for the one you are caring for.

     I hope that this will help others that are in the same situation as myself or someone else on the panel, get the information they need to not only find the resources that are available. But how to get the things or services that are available. 

　 Coleman is a miracle child! He can see, talk some, he drinks from a sippy cup, with assistance, and he can eat puree food, with assistance. He also has some use of his right hand, and is able to communicate with his ECO-14. He shows different emotions. He loves to go to Church, school, shopping, out to eat, square dancing, and 4-wheeler riding.

　 I have had the honor of speaking on prevention of shaken baby syndrome in several venues; support groups, school staff, The County Wide Baby Shower, STNA and Nurses at Summit Acres and also presented at a breakout session at the BIAOH 29th annual conference in Columbus. I also sat on a panel in a caregivers breakout session. The BIAOH asked that I sit on the Caregivers panel that will hopefully help other families who might face the same challenge that I have with Coleman. It is an honor to have been ask to be apart of this new Caregivers panel. In March of 2010 OCALI (Ohio Center for Autism Low Incidence) published Colemans story, at their request, on their web site.

   The International Shaken Baby Conference in Atlanta Georgia, gave me an opportunity to share Colemans story and I was ask if his story could be part of a DVD being made for Pennsylvania hospitals.　The plan is for the DVD to be about eight minutes long and will have four families that are involved with victims of shaken baby syndrome. This　DVD will　be shown to a parent before a new born baby is released from a hospital in Pennsylvania. I also have been invited to be on a panel as a Keynote in Massachusetts in September next year.　

　 Prevention of shaken baby syndrome is my passion. If teenagers are given the preventive information before they become adults and must care for a child, I feel there would be a drastic reduction of shaken baby syndrome. I have been given the ok to talk to the students at Caldwell Schools and I am looking forward to giving our teenagers a plan so they can be prepared when they become adults and bring new life into this world.  　

   It is my hope to eventually have every teenager in Ohio be aware of the steps to take to prevent Shaken Baby Syndrome. The roll of the caregiver is not to stop the baby from crying, it is  to know how to deal with the crying until the crying stops. 

 

Betty Bacalu

Betty is a Registered Nurse and a long time resident of the Cuyahoga-Summit county area. She worked for many years in several Cleveland hospitals, until her son sustained a traumatic brain injury in 1997, from a car accident. She is a member of the Brain Injury Association of Ohio, Ohio Brain Injury Advisory Committee, Ohio TBI Caregivers Alliance, International Brain Injury Clubhouses Alliance, and the Summit County TBI Collaborative. She also co-leads a brain injury support group in Akron, Ohio.  Betty founded the Ballinger TBI Clubhouse in 2003, now Community Clubhouse. She  was Executive Director until 2011. Betty developed the Clubhouse as a result of seeing an unmet need for community services and activities for her son and other individuals with brain injuries. When she received the “middle of the night” phone call that her son had been in an accident, her life changed forever.  Since then, Betty has been the caregiver for her son. Her son’s injuries left him with a severe brain injury, right-sided hemi-paresis, and aphasia. He is unable to drive or be competitively employed. Betty oversees and helps him plan his daily/weekly activities while allowing him as much autonomy as safely possible. She takes him to all his medical appointments and handles his banking.  Her desire is to see him have a fulfilled life.

 

 Lyla Kepler

 My name is Lyla Kepler and I have long served as a TBI support group leader and advocate for Ohioans living with brain injuries and their families in the Canton area, and across the state of Ohio.  As a mother whose now adult son sustained a TBI at a very young age, I am dedicated to both preventing TBI and improving the lives of individuals living with disabilities as the result of a TBI. 

I have previously sat on various committees associated with The Brain Injury Association.  My main focus is advocating for my son and others with TBI, as well as educating family members and caregivers of those with TBI as to the intricacies of life with TBI victims.