Buncombe, Pitt, Guilford, Macon and Burke Counties | Mountain AHEC
Improving Care for People Developmental Disabilities (2004-2007)
When MAHEC initiated a three-year project on Improving Primary Care for Persons with Developmental Disabilities in the fall of 2004, little did anyone know the wave of work the project would create…or the lives that would be touched. Funded by the NC Council on Developmental Disabilities, with in-kind and cash contributions from MAHEC, the initiative began as most do, with a period of research and informative interviews. Very quickly it became apparent to the original project leaders, Robert Weaver and Irene Jurczyk, that the most underserved among those with developmental disabilities are adults.
The informed interviews and research included a (perhaps first-time ever) live teleconference of sixty-some adults, most with mild to moderate cognitive disabilities. What did they have to say about the level of care they were receiving? It was a powerful event which took place simultaneously in Franklin, Shelby and Asheville. And what was learned was that they wanted to be heard.
Following the initial exploration, MAHEC offered nine traditional continuing education programs targeted to mental health providers, pharmacists, physicians, and dentists in the spring of 2005. In total, more than 400 health professionals attended. But as those in the AHEC system recognize, traditional lecture time rarely results in changed behaviors. In the second year of the project, Jurczyk, with Terry Cordell as her new associate for the project, took a different tack. Cordell traveled to the University of Illinois-Chicago to see first-hand a nationally renowned program on nutrition and fitness for adults with developmental disabilities. Shortly after, Cordell invited the faculty to come to Asheville to present a two-day train-the-trainer event for representatives of the YMCA, Asheville City Parks and Recreation, and various group homes.
This effort, in turn, led to MAHEC’s direct participation with a group of adults with DD, launching a 24-week health and fitness program for the St. Dunstan’s group residence. They named themselves the St. Dunstan’s Wildcat Team, and a more enthusiastic crowd you have never met.
While the Wildcats were exercising and eating their way to better health and more self-direction, Jurczyk contacted Dr. Bruce Kelly, a MAHEC family medicine residency graduate and former FM faculty, to help her develop a mini-fellowship in adult developmental medicine. Kelly had recently become the primary care physician for the Black Mountain Center, a former ICF-turned-skilled nursing facility for aging, frail adults with developmental disabilities. He was reluctant. As with virtually all family physicians, internists, and other adult providers, he had received little formal training in the area of DD and was just, as he put it, getting his feet wet at the center. On the other hand, he fully appreciated the need for more formal training.
Together, Kelly and Jurczyk met in person and by phone with a small cadre of physicians interested in the field. The curriculum was a year in the making. Physician champions in other states urged MAHEC to target FM faculty at the SOM and GRE levels to sign up. There were no takers, so the mini-fellowship was then targeted to physicians in community practice. Those who signed up for the first cohort were a motley bunch, but as Kelly said, it was a lot like the Mick Jagger refrain: “You can’t always get what you want, but if you try sometimes, you just might find, you get what you need.”
By the time the first cohort convened for a weekend orientation in February of 2007, the group consisted of eight physicians, representing family medicine, internal medicine, med-peds, and pediatric pulmonology. They came from four states. They have their practice improvement projects, their shadowing assignments, their reading assignments, and monthly they meet. Through technology that could only be dreamed most of the last century, physicians across North Carolina link up with their colleagues in Boston, Cleveland and Albuquerque. And what’s best perhaps, apart from their commitment and dedication, is the powerful, professional relationships that are being formed, including discussions around forming a practice-based research network (PBRN) to begin development of evidence-based best practices for a population long overlooked in the larger academic arena.
What’s happened internally at MAHEC has been interesting, as well. The Health Sciences Library, with the help of librarian Sue Stigleman, has acquired perhaps the best collection of disability resource materials in the state. Senior administrative assistant Dina Gillespie has become a champion of the cause - just visit her office and see the posters to appreciate her commitment. And David Reid, James Joyce, and Chris Russell in MAHEC’s IT Department have risen to the challenge as well, somehow making the connections between seven sites work.
The MAHEC Mini-Fellowship in Adult Developmental Medicine is the first training of its kind in the nation, and it is getting noticed. It will be one of the discussions in a pre-conference at the annual STFM meeting in Pittsburgh this fall. There have been inquiries from physicians in other states regarding a second cohort. It remains to be seen whether the mini-fellowship will find funding to continue, but until the need is met through focused training at the undergraduate and graduate level, that’s what its project leaders hope. At the very least, the groundwork has been laid, and there are more than a few at MAHEC who have a passion for the work.
What’s next? A new challenge was presented to MAHEC just this year. Based on the success of the mini-fellowship, MAHEC was asked by the NC Division of Public Health Office on Disability and Health to develop a medical curriculum on the transition of care of youth with special health care needs (YSHCN) from pediatric to adult care. Jurczyk naturally leaned on Kelly once more, and once more, Kelly rose to the challenge.
No one has a crystal ball to see where all this good-intentioned, hard work will lead What can be said is that a few in the forefront and lives unseen have been touched by MAHEC’s commitment to improvements in the quality of health for people with disabilities.