The mission of the Spina Bifida Association of North Carolina is dedicated to promoting awareness of Spina Bifida and enhancing the lives of those affected.
The Spina Bifida Association of North Carolina has a vision to help promote awareness of Spina Bifida. Every year thousands of babies are born with Spina Bifida. We feel that the awareness programs we provide will help decrease the amount of babies born with Spina Bifida and help mothers have the most information possible to help with raising a child with Spina Bifida.
Enhancing the quality of life for those affected by Spina Bifida is another vision the Association hopes to achieve. Through programs, services, parental support, networking and providing education and advocacy we feel we will be able to help those affected by Spina Bifida; by doing so people living with Spina Bifida will be able to live life to their fullest potential.
I am a pediatric physical therapist, originally from Waynesburg, PA. I moved to North Carolina in August of 2007 to work at a large pediatric therapy practice, with hopes of making a difference for children with disabilities in NC. Upon starting my job as a pediatric physical therapist in Raleigh NC, I was struck with an awful realization….Children with disabilities must pay for healthcare services in the state of North Carolina!!! In Pennsylvania, every child with a disability, regardless of income, receives healthcare for free. I went from seeing a child 2-3 times per week for physical therapy to seeing a child one time per week or even one time per month solely because of financial reasons! My frustration grew as I continued practicing in North Carolina. The hardest thing for me was seeing children with chronic disabilities suffer, just because their families couldn’t afford the 40-60 dollar insurance co-payment every week. This may not sound like a lot, but it adds up quickly. For example, an average child with a disability may receive 3 therapies per week with an average co-payment of 40 dollars per session ($6,240 per year). Most children with chronic disabilities also have approximately 1 surgery per year and have to pay at least 20% (20% x 50,000 = 10,000). This middle class family has just had to pay 16,240 dollars extra this year just because they have a child with a disability. This does NOT take into account the price of medications, specialist visits, or equipment. The total cost is outrageous!! Why should they be punished with this financial burden, simply because their child has a disability?
I think the breaking point was when I was seeing a family with a beautiful 6 year old little girl with Spina Bifida who could not afford to attend therapy more than every other week because of financial reasons (She needed 2-3 sessions per week). They were a hardworking middle class family, who had three children. I talked with the Mom about various resources (i.e.) Medicaid, CAP programs, or the Spina Bifida Association. She told me of the long and draining battles she and her husband had fought to try and receive help for their daughter and subsequently lost time after time. I desperately wanted to help this family and immediately started searching through various agencies to see what funding was available. One of the fist organizations I tried contacting was the NC Spina Bifida Chapter. Unfortunately, their number was disconnected, even though they had a “working” website. After numerous dead ends, I decided to contact the National Spina Bifida Association who told me that the North Carolina chapter had folded and they did not provide funding to individual families. They asked me if I would be interested in starting the North Carolina Chapter back up and I agreed with the help of my mentor and the best pediatric physical therapist I have ever met (Nazaly Miller). So one thing led to another and here I am today, several months later, with 25 interested families who want to make a difference in North Carolina, just like me. I am so blessed to have been given this opportunity to help individuals with Spina Bifida and I intend to make a difference no matter what it takes.
Read an article by Carolina Newswire about the North Carolina Spina Bifida Support Group here!
