The Health series is presented by AdventHealth
A Q&A with internist, pediatrician, and clinical leader of AdventHealth Medical Group’s Special Pediatric-to-Adult Need (SPAN) program, Laura Gaffney, MD.
How does primary care differ for special-needs patients?
Primary care for patients with special needs requires a calm, thorough investigation. Really, this is what every patient should expect, but special-needs patients also require a physician who understands the changes that a pediatric or genetic disorder manifests throughout their lifetime.
What challenges do people with developmental disabilities face as they age out of pediatric care?
1) Expressive language: Many have communication devices or use sporadic sign language using modifications due to paralysis. This makes use of a virtual translator nearly impossible.
2) Receptive language: Hearing, vision, and intellectual abilities may interfere with understanding and implementing health changes.
3) Emotional: The teen years can be emotionally tough for anyone, but developmental disabilities can make it difficult to maintain friendships as other teens “move on” to adulthood.
4) Sexual health: People with developmental disabilities have changes in sexual health just like any other person, but sometimes that is not discussed or supported.
What drew you to this area of work?
I had exposure to complex medical patients while attending UMKC School of Medicine. Patients were living longer with congenital disorders, but there was not a comprehensive look at health care. Now, I can evaluate complex medical mysteries and try to get a diagnosis, while also finding a way for patients to live more comfortable lives. My tenacious personality lends itself well to problem-solving for underserved populations.
What inspired you to establish SPAN?
My mom and grandma inspired me. My grandma worked as a librarian in St. Louis serving children with cerebral palsy and polio. My mom died too young of multiple sclerosis; she spent decades in wheelchairs, and no one ever fully examined her.
Tell me more about the program.
SPAN focuses on teens and adults with special needs for primary care. These days, people are living longer with genetic, intellectual, developmental, and neuromuscular disorders—even just 30 years ago, this wasn’t possible. Advanced technology in neonatal care has led to two generations of people living who, historically, would’ve never had the chance. That said, the care for these patients is often shortsighted and doesn’t address these longer life spans. Many primary-care adult physicians, nurses, therapists, counselors, and administrators have not yet been educated in this field. In the Kansas City area, there are more than 50,000 teens and adults who have a genetic or developmental disorder. One in four U.S. citizens will have a short- or long-term disability in their lifetime. Every year in the USA, 50,000 people with autism enter adulthood. All of these people deserve good health care and they need medical homes.