Editor’s note: Madhuri Subhadra Molleti contributed background data and interview content for this article.
UAB Medicine’s Staging Transition for Every Patient (STEP) program helps teenage and young adult patients with chronic and complex medical conditions from childhood transition to adult health care. The program also works to create awareness about the unique challenges this vulnerable patient population faces.
Complex health conditions such as cerebral palsy, spina bifida, rare genetic disorders, neuromuscular disease, and severe neurological issues require ongoing care that often calls for technological support and multiple medical specialists. Accessing mental health care is especially challenging for these patients.
Moving to adult health care requires much more than simply transferring medical records from one clinic or doctor to another. The details of treatments, insurance changes, and other issues can be a challenge for patients, their family, caregivers, and even some medical professionals. The STEP program helps ensure that patients are matched with primary care physicians and specialists who understand how to manage their complex medical needs that began in childhood.
Barriers to mental health care
Under the leadership of Medical Director Carlie Somerville, M.D., and Program Director Betsy Hopson, the STEP program has made significant progress in helping young patients meet these challenges. Now, the STEP team wants to focus similar attention statewide on the need for access to mental health care especially for individuals with a disability.
“We need more psychiatrists, counselors, and primary care doctors to tackle the significant mental health challenges our patients are facing,” Dr. Somerville said. “We also need to be focusing on educating future psychiatric and primary care providers in the care of children and adults with disabilities who are at increased risk for mental health issues and have significant barriers to care.”
These barriers are especially difficult for children, teens, and young adults who have a chronic illness. They are living longer but still face a higher risk for mental health disorders such as anxiety and depression.
Chronic medical conditions can lead to mental health issues in many ways. Some mental health conditions run in families, but they also can be caused by life experiences, post-traumatic stress related to health care, trauma, or reactions to medications or treatments. Anxiety or depression may stem from a poor self-image, feelings of rejection by family or peers, or from treatment that requires long separations from family, school, and home. These feelings also can be caused by pain, complex medical issues, and lifestyle changes required by a chronic condition.
Closer look at a national issue
In 2022, more than 233,000 Alabama adults who needed mental health treatment could not afford it, and almost 10% of residents lack insurance that would help them pay for care. Other barriers are related to transportation, Internet access, and the stigma of seeking care.
The rise in depression during the COVID-19 pandemic further strained the mental health resources in Alabama and across the country. According to a study done at UAB, the rate of depression and anxiety symptoms grew from 11% to about 40% nationwide.
Jada Lucas, a young Alabama resident with a complex illness, agrees that it’s difficult to access mental health care in Alabama.
“I found that mental health care is one of the most important things for me, yet it’s one of the most difficult things to get help for,” Lucas said. “I’d call around, and there would be problems such as insurance issues and even months-long waits for office appointments. At times I felt helpless and that I would never get the help I needed. All I could think about was finding a mental health care provider before things got too out of control. It took a lot of searching around by my doctors, but eventually they found help for me.”
Dr. Somerville hopes that drawing attention to the scale of this issue will lead to more mental health services and options for reducing the demand for care.
“The lack of attention to this increased mental health burden will leave those in Alabama more susceptible to poor health outcomes and preventable disease,” Dr. Somerville said. “Alabama has great potential to begin reducing our mental health burden by expanding telehealth services, the number of mental health care personnel, and opportunities for those who are uninsured or on Medicare or Medicaid.”
To get a referral to the STEP program, speak to your pediatrician or Children’s of Alabama specialist. Those age 18 and up may call 205-801-7474 to schedule a new patient appointment with the STEP program. To begin transition planning from the Children’s side, please call 205-638-9100 and ask to be connected with the STEP program.