NYS Developmental Disabilities Planning Council (DDPC) awards $35,000 for support of medically fragile

George E. Fertal, Sr., Chairperson, today announced that on December 11, 2008 the New York State Developmental Disabilities Planning Council (DDPC) awarded $35,000 each to United Cerebral Palsy of New York City, The Children's Hospital at Montefiore, Visiting Nurse Regional Health Care System, and St. Mary's Healthcare System for Children to help address unmet support needs for individuals who are medically fragile and their caregivers.

"Medically Fragile" is a term that describes a group of children and adults who have profound disabilities requiring long-term care, respiratory support, increased usage of medical supports, and caregiver support. Many of these individuals rely on assistance to eat, dress, and in some cases, to breathe. To help these individuals the DDPC sought "field initiated ideas" to discover and address unmet needs for individuals who are medically fragile and their caregivers.

Several areas were identified where individuals who are medically fragile were in need of greater supports. These areas included nursing services, where needs included a lack of trained nurses, concerns about recruitment and retention of in-home nurses, and a need to promote the benefits of in home care as a career choice. Other needs include greater community integration such as residential options beyond nursing homes and better provision of day and respite services; reaching new caregivers before and after discharge with new caregiver supports and resource materials, and greater coordination of services at the time of discharge and after.

Mark Hoffacker from St. Mary's Hospital for Children comments on how his hospital is helping families of children who are medically fragile to have the supports and resources they need to advocate for their children. "St. Mary's Hospital for Children is developing a curriculum geared for parents of medically fragile children to become better advocates for their children as well as influence public policy related to all children with special healthcare needs. Topics included funding healthcare, writing an individualized health plan (IHP), media advocacy, developing relationships with professionals, public policy advocacy and organizing for action. Throughout the training participants are being taught how to tell their child's story to different audiences with an advocacy goal in mind. It is hoped that the training will be replicated throughout New York State once the curriculum is field tested and this project will help to develop the next generation of skilled parent advocates who are focused on the many needs of children with special healthcare needs. Currently the training is being taught by a professional and a parent with participants who have a broad range of advocacy experiences. The first group of trainees all asked to continue meeting to share their advocacy efforts and successes."

Alex Okun from the Children's Hospital at Montefiore explains how they are working to improve services for families of children who are medically fragile. "An interdisciplinary hospital-based team has recently incorporated a new level of collaboration at the Children's Hospital at Montefiore, thanks to support from the NY DDPC. "Planning Better Home Care", as our team is known, now offers parent-to-parent support as part of multidisciplinary, family centered discharge planning for children with special health care needs and their families. Caregivers contemplating how best to care for their children living with dependence on technology or facing life-threatening or life-limiting chronic conditions are helped by our team through the experienced input of a pediatrician and two parent representatives, themselves mothers of children with special health care needs. Our team joins with hospital based professionals in social work, nursing, child life and pediatrics to assure that families' wishes and needs are heard and that transition to the community is a smooth as possible. Short and intermediate-term follow up is maintained by the team. Goals of care are articulated; comfort is prioritized; spiritual and social supports are offered; and bereavement support is provided, where appropriate."

Sherry Rose, Director of Institutional Giving at United Cerebral Palsy of New York City, tells us how their training program is helping to improve care for individuals who are medically fragile. "UCP/NYC has partnered with the Phillips Beth Israel School of Nursing and Kingsborough College School of Nursing as well as several large New York City nursing contract agencies to increase the pool of nurses who have the skills and experience required to successfully deliver high quality health care services to people who are medically fragile. UCP/NYC developed a training curriculum for nurses and nursing students that was enthusiastically received by our partners. Nurses are often the first-line caregivers and coordinators of care within the health care system, so it is vitally important for them to understand the complex and multiple needs, concerns, and medical problems often posed by medically fragile individuals. A pivotal part of the training will be the opportunity to meet and talk to medically fragile individuals with developmental disabilities to learn about their personal experiences when accessing health care services. HealthLink for Nurses grew out of an initiative to train first year medical students at New York University School of Medicine, which is still in progress. Our vision is to ultimately expand HealthLink to other disciplines."

The DDPC is a federally funded state agency dedicated to designing and implementing new programs that serve New Yorkers with developmental disabilities and their families in the most effective way possible. Sixty percent of the Governor-appointed membership of the DDPC is parents and people with developmental disabilities. For more information on the DDPC, go to: www.ddpc.state.ny.us.