UAB Medicine’s Staging Transition for Every Patient (STEP) program helps young adults with chronic health conditions move from pediatric care at Children’s of Alabama to adult care. In May 2022, the program held a “Transitioning to Adulthood with a Disability” event to help patients and caregivers connect with community resources and health care teams. During the event, some patients and their family members shared what the STEP program has meant to them, emphasizing the growing need for this type of service.
Many people with serious health conditions such as spina bifida, cerebral palsy, inflammatory bowel disease, diabetes, neuromuscular disease, and severe neurologic issues now live longer thanks to advances in treatment. Complex health conditions require ongoing care that often calls for technological support and multiple specialists. When a young adult with such conditions moves from child-oriented to adult-oriented health care, the change involves more than just the transfer of medical records from one clinic or doctor to another. The complexities of medical treatments, insurance changes, and other details can be a challenge for patients, families, and caregivers. That’s where the STEP program comes in.
Under the leadership of Medical Director Carlie Somerville, MD, and Program Director Betsy Hopson, the STEP program has helped some 300 patients with their transition to adult care since 2019. Marking its second year in September 2022, STEP is the first formal program of its kind in Alabama and the surrounding region. The program includes specialists across 10 departments and 15 divisions within Children’s of Alabama and UAB Medicine.
Raising Awareness
For the event, STEP partnered with the local non-profit disability services organization United Ability, with the goal of helping patients and families connect with resources and support. A key goal was to raise awareness of both the STEP program and the growing demand for its services. Some health care providers are not aware of the many resources young patients with chronic conditions require as they enter adulthood. Knowing where to refer these patients for specialty care, supplies, medical devices, housing, school/work, financial help, and even legal questions tend to fall outside the scope of a doctor’s practice.
“It’s a challenging issue because it’s a complex issue,” Dr. Somerville says. “Many adult doctors are not comfortable taking on a patient with diseases of childhood. In small and rural clinics, they may not even be equipped. This creates a real struggle for young patients who need exactly that kind of complex, coordinated care when they reach their adult years. But as more health care workers and patients become aware of STEP, the more opportunities our team has to connect patients with primary care and specialty care doctors who are a good fit for them.”
A STEP primary care clinic for those age 18 and older provides medical care, referrals to adult specialists, and transition plans designed for each patient and family. The goal is to prevent gaps in medical care and provide support services such as physical therapy, social workers, counseling, and emergency planning within a single primary care setting. The program also assists adolescent patients age 14 and older at Children’s of Alabama with preparation for adult health care. This preparation includes learning how to make appointments, get medications from the pharmacy, build independence, and generally develop skills needed to manage health in adulthood.
Testimonials of Transition
At the STEP event, 100 patients and their families – along with 26 health care professionals – learned what the program has meant to those who are involved. Jill Billions, MD, who has practiced both internal and addiction medicine in Alabama, appreciates STEP from multiple perspectives. Her 39-year-old daughter, Autumn, has cerebral palsy.
“I cried the first time my daughter saw doctors with the STEP program,” Dr. Billions says. “Autumn is confined to a wheelchair, weighs about 70 pounds, has a feeding tube, can’t hold her head up, and is nonverbal. Finding doctors and specialists willing to care for her has been a real challenge. It’s hard to get coordination across the services she needs. When I met Dr. Somerville, it was obvious she had designed a wonderful program. With STEP, patients can see rehab, neurologists, social workers, and other specialists in one system, all in one day. That kind of communication and coordination is a life-changing arrangement.”
As a mom and physician, Dr. Billions says she can see the STEP program changing best practices for patients such as her daughter.
“I think, or at least I hope, attitudes may change,” Dr. Billions says. “Parents like me get cooperation in the early years because our kids are, for a while, seen as ‘the cute little handicapped child.’ That perception reverses when these kids become adults. For example, my daughter, at her small size, has an indwelling medical device that is used in pediatric practice, and one doctor was reluctant to see Autumn because he was not able or willing to handle that in an adult patient. As more health care professionals learn what STEP is trying to accomplish, maybe families like ours will find doctors becoming more comfortable. And the STEP team will have more opportunities to refer patients to those doctors.”
Dr. Somerville is hopeful too, based on the feedback the STEP team has received at awareness and resource events, as well as in practice.
“We are already planning next year’s event,” Dr. Somerville says. “It’s a chance for patients and providers to learn about us, but I assure you that we learn a lot, too. It’s extremely encouraging. One of our patients put her experience in words I will never forget. She said, ‘Now that I have found the STEP program, I feel safe.’”
To get a referral to the STEP program, speak with your Children’s of Alabama specialist or your pediatrician. Those with a complex or chronic disease of childhood who are at least 18 years old can call the UAB Primary Care Access Center at 205-801-7474 to schedule a new patient appointment with the STEP Clinic. To begin transition planning while still at Children’s of Alabama, please call 205-638-9100 and ask to be connected with the STEP program.