Thanks to advances in medical science and a highly developed network of specialized pediatric health care services, people with intellectual and developmental disabilities (IDD) are much more likely to live into adulthood than they were several decades ago. However, once they reach age 18, they may find a limited number of providers available to address their unique and specialized health care needs.
To improve access to quality health care for adults with IDD, the University of Louisville School of Medicine, UofL School of Dentistry and the Lee Specialty Clinic are sponsoring the Second Annual Caring for Adults with Intellectual and Developmental Disabilities Conference on Saturday, Nov. 12 at UofL. The conference will inform physical, occupational and speech therapists, physicians, dentists, social workers, patients and their caregivers about best current practices and future treatment directions for adults with IDD and address the multidisciplinary approach needed for their care.
"These are individuals with neurologically based conditions who require interdisciplinary care from a variety of health care providers, including primary care, dentistry, cardiology, pulmonary, neurology, psychiatry and psychology, as well as physical therapy, speech therapy and occupational therapy," said Michael Sowell, M.D., professor in the Department of Neurology at UofL and co-director of the conference.
One such individual is Steven Haburne, described by his mother as, "a 41-year-old man with a pleasant personality who was born with spastic quadriplegic cerebral palsy and developmental disability." He moves in a wheelchair, is non-verbal and has a seizure disorder. Haburne's mother, Shirley Haburne, said they have met with physicians over the years who did not speak to Steven directly or who made assumptions about his condition without listening to Shirley's description of his individual needs. When Haburne was very young, his family's dentist told Shirley he was not comfortable treating Steven.
"It did hurt my feelings, but I understand. He is not the same as other patients," Shirley said. "It has taken a lifetime of finding doctors. It takes time to find a doctor who will listen to you and trust what you say."
Steven now receives dental care at Lee Specialty Clinic in Louisville, which offers medical, dental, psychiatric and general health care services for patients with IDD, and he receives medical care from several specialists at University of Louisville Physicians. Shirley hopes the conference will help make optimal health care available for her son and others with IDD.
The conference will cover autism outreach, mobility and assistive technology, cognitive decline, advocacy for adults with IDD, and understanding the barriers in transitioning a child with neurodevelopmental disabilities into the adult provider network. Afternoon breakout sessions include topics in medicine, dentistry, developmental psychiatry and psychology, therapeutics and social work and are designed to stimulate discussions among health care providers, patients and their families that will lead to an improved standard of care in the region.
The event also is designed to support the physician specialty of adult developmental medicine.
"Developmental medicine as an emerging specialty pulls together a formal curriculum and training pathway to prepare physicians to provide the comprehensive care that these individuals need," Sowell said. Learn more about this specialty at the American Academy of Developmental Medicine and Dentistry.