Homefront Initiative—Georgia Advocacy
Unlock the Waiting List
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- On February 26, 2004, Samantha Refro, Executive Director of the Brain Injury Resource Foundation, spoke at Disability Day held at the Georgia State Capitol. Here's what she had to say.
Hello, my name is Samantha Renfro. I am thrilled to be here and appreciate the opportunity to tell my story. I moved to Georgia in 1986 and work as the Director of Business Development at Emory University's Goizueta Business School and as the Acting Executive Director of the Brain Injury Resource Foundation. I also serve on the Distribution Committee of the Brain and Spinal Injury Trust Fund Commission and a number of other committees within the State that deal with disability issues.
More importantly, I am the mother of a daughter who was traumatically brain injured 23½ years ago as the result of a car accident. My daughter Debbie had a severe traumatic brain injury in 1980 and sustained cognitive deficits that have precluded living independently ever since. She has short-term memory loss and frontal lobe syndrome, which causes her to have poor impulse control and poor judgment. Before Debbie received an Independent Care Waiver, my ability to keep her safe as a single mom who needed to work was impossible. During those 16 years before the waiver, she ended up in over 23 rehabilitation facilities, has been repeatedly abused and raped by men to the point where she had to be hospitalized many times because of the beatings. She disappeared four times and ended up in jail even though we alerted the police to her condition. And, worst of all, she was kidnapped from a rehabilitation facility and disappeared for one month. The man responsible for the kidnapping eventually was caught and put in jail; however, he continued to stalk her when he was released. Just imagine for a moment what that was like for me, her mother, who loved her very much, but had nowhere to turn.
The good news is that when we finally got Debbie onto the Independent Care Waiver, she has received home and community based services and remained safe for the last 2½ years. She now holds a part-time job, goes to church, and participates in other community activities. She is a contributing member of society. If ever, though, these safe confines and structure should be taken from her, I know we will return to a life of relentless chaos—one filled with fear and uncertainties, and danger for Debbie.
I am sure you can imagine that there is more to the story. My reason for being here, though, is to stress how important the waiver is to individuals like Debbie. If they are given the chance to have structure in their lives, they can be productive citizens. If not, they may end up in jail, mental hospitals, or some other institution that not only will compound their family's grief, but will cost the tax payers money.
The Waiting List Numbers for Georgia
Unfortunately, there are not enough waivers to go around and the waiting list continues to grow. This is tragic! We must find a way to unlock the waiting list for those individuals who are not as fortunate as Debbie. What does this mean? What is needed? Who is waiting for services?
There are 4,276 children and adults with developmental disabilities who are waiting for home and community based services. It will cost the state 28 million to fund just 1,662 of those who are in crisis.
There are 262 individuals with severe physical disabilities or traumatic brain injuries still without services. Two million dollars are needed to provide services to the 87 people in this population who are in crisis.
Some of these folks have been waiting for up to 10 years for services. This is not acceptable.
Unlock the Waiting Lists! Fact Sheet
I see so many advocates here who share my vision. Thank you for your efforts on behalf of the thousands who need services. We need your voices to resound across the rotunda and into the legislators' offices. We need your energy and passion to touch their hearts and pocketbooks.
I am here to fight for all those on the waiting list who are living in back rooms or institutions, for those who have not even heard of the waiting list and their caregivers who are too exhausted to fight for themselves. If you have not walked in their shoes, you can't imagine how difficult it is to care for a loved one with a disability. If you have not walked in their shoes, you cannot imagine what it is like to watch your loved one languish in an institution with no hope of coming home. These individuals and their families deserve a life of dignity in their community. The fact is that this is not possible without a helping hand from the State.
The Cost to Address the Waiting List
I say to the legislators who are here, please listen to what we have to say. Open your ears and hear us. We don't want to be voices crying in the wilderness. We need your help to appropriate 30 million dollars to unlock the waiver waiting lists to provide home and community based services to those in crisis. Take the time to talk to us. Each one of us has an amazing story to tell. Thank you