In January 2014, the Rose F Kennedy University Center for Excellence in Developmental Disabilities (RFK UCEDD) received a grant from the Special Hope Foundation to help young adults with intellectual and developmental disabilities transition from pediatric into adult primary medical care. Since its founding in 1956, our center, through its clinical program, the Children’s Evaluation and Rehabilitation Center (CERC), has been providing diagnostic and treatment services in the Bronx, New York, an ethnically diverse and economically disadvantaged urban area. Although quality primary care for children with developmental disabilities is available, finding similar services as these individuals transition into adulthood has been a long standing problem. In recognition of the unique obstacles to obtaining adult primary care services, the Special Hope Foundation funding is helping to facilitate a partnership with the Developmental Disabilities Health Alliance (DDHA) that is developing a Health Home for young adults who receive specialty and care coordination services at CERC. Currently, through the Special Hope Foundation initiative, 28 adults with developmental disabilities have been referred to and begun receiving primary care services. Luz Cantres, a young woman with spina bifida, was one of the first adults to be served by this initiative. Below, Luz shares some of her experiences with health care services:  

What are some of your experiences with obtaining health care services as a young woman with spina bifida?

By the time I was 18 years old, I was being followed at the Blythedale Children’s Hospital for my Spina Bifida medical care, but I didn’t like it because it was a children’s hospital, and I felt out of place because I was the only adult patient in the waiting room. A few years later Blythedale added an adult clinic but I still didn’t like it because I still didn’t feel that I fit in. I had a general or family medical doctor, but he didn’t understand my disability or spina bifida and the problems I had with latex allergies and the other physical problems that I go through every day of my life. He had no idea how to examine someone like me who uses a wheelchair. His examining tables and equipment were too high for me to use during the examination, and so, unless a staff member lifted me, he would skip the physical exam and just talk to me. I started going to other clinics and private doctors to try to get medical care, but I always felt that they had little knowledge about working with people with disabilities. So, I used the emergency room for a lot of my ordinary illnesses like a fever or pain, but then, it was back to educating them on the latex allergies and the specific issues of spina bifida and waiting for latex free medical supplies. This wait in a city hospital could take 10 to 12 hours of sitting in the emergency room. Another problem that I have had is seeing a gynecologist. The offices that I have visited are not accessible, so this has been a major problem. Also the attitudes of some doctors have not been very understanding of my life situation, and the gynecologists have been very discouraging when I have tried to discuss family planning. This winter I joined the Developmental Disabilities Health Alliance through the CERC program. I have been a part of the CERC self-advocacy and spina bifida adult support group for the past seven years, and I have been trying to meet and make presentations with doctors and other professionals about my healthcare needs, so I was happy to learn about DDHA and how it is trying to develop a health home – a place where I can get all of my health care needs met. The whole attitude of the staff is different, and very positive and supportive:

  • There is always someone available to talk to when I have a question about my health. I can call anytime and someone will get back to me.
  • The examining table goes up and down, and I can transfer by myself.
  • The doctor and the nurses don’t rush, and I can ask questions and make sure I understand what is being said to me.
  • The nurse writes down instructions for me to follow at home, and this helps me to remember. The nurses put in my prescriptions directly to the pharmacy, so I don’t have to bring them and this is a great help because traveling back and forth is very difficult.
  • The nurses always do a follow up to call to see how I am doing, and see if I need to come back.

Being able to call at any time has been a great help for me and this allows me to skip going to the emergency room which I did routinely because I could never get an immediate appointment. I am really grateful for this service.

*** Are you a person with a developmental disability interested in improving healthcare? Join Special Hope Foundation’s Self-Advocate Advisory Board! Learn more.