Mother tells legislature of how state helped her son

By Nancy Vara
GwinnettForum.com

The following is from the mother of a son with cerebral palsy. She testified recently about how the State of Georgia was able to be of assistance to her.

LILBURN , Ga., March 11, 2008 -- A year and a half ago, my 24-year-old son Carmine was still in school. Diagnosed with cerebral palsy and developmental disabilities, Carmine had nevertheless been an active member of the community with a part time job in addition to school. He participated in plays, attended church, and engaged in various social outings.
Vara
Once Carmine graduated, however, everything changed. While we had thought ourselves prepared, we did not anticipate the amount of energy, money, and emotion required for our son's round-the-clock care. Because cerebral palsy affects the area of the brain that controls movement and language, he is unable to perform a number of basic tasks; hence all of Carmine's personal care needs were left up to our family.
We quickly found ourselves physically, emotionally, and financially drained. The young man who enriched our lives had suddenly become a tremendous burden. It became clear that we could not continue this way. In the past, our family has helped raise money for many in need, and now we were the ones in need.
Household accommodations for people with disabilities are very expensive. We had almost no spare time, and keeping my Lilburn-based business afloat was a challenge. Lifting my 120-pound son three to four times a day was inadvisable but unavoidable.
So recently, with the support of the Atlanta Alliance on Developmental Disabilities, I testified before the Georgia House Appropriations Subcommittee on Human Resources. I asked for increased funding for the Mental Retardation Waiver Program (MRWP), an agenda that would help provide personal supports in order for Carmine and others in similar situations to become fully integrated into the community.
With 5,700 people still on the waiting list to receive waivers, I hope that Georgia will continue offering support and move forward for families like mine by insuring that 2,500 new MRWP waivers are made available in the Department of Human Resources 2009 Budget. It is also imperative that providers receive the seven percent increase that they deserve (with $2M in state funds) to continue to be able to serve Georgians with developmental disabilities.
With the backing of the governor and the legislature, in May of last year Carmine received a MRWP waiver. Since then, he has received a promotion at his job and a raise. He has transportation and personal support for work and home and is able to go to the movies with friends. He is currently rehearsing for a church play. Wanting to give back, he has signed on for two nonprofit boards that advocate for our citizens with disabilities. None of this would have happened without the Medicaid waiver from the state -- along with the unerring encouragement of his friends, family and personal support staff. Thanks to programs such as the MRWP waiver, Carmine is now capable of leading a life inside the community where he is treated with dignity and respect -- and his mother feels like a productive citizen again as well.