Teens with disabilities are up to five times more likely to suffer from mental, emotional, and behavioral health disorders than those without disabilities. In particular, they are more likely to be anxious and depressed, which when left untreated, can make their transition to adulthood more difficult.
Many teens with disabilities and their families receive “care coordination services” from a state Maternal and Child Health Bureau agency. These services help these young people get the medical care and social services they need, but usually do not provide mental health treatment or offer preventive mental health interventions.
We hope that this study will lead to improvements in how we identify and treat depression and anxiety in teens with disabilities.
Now, Senior Research Scientist Tracy Gladstone, Ph.D., and researchers at the University of Illinois Chicago (UIC) have been awarded nearly $7 million from the Patient-Centered Outcomes Research Institute (PCORI) to assess whether an enhanced care coordination program called CHECK, which includes a tailored mental health treatment component, achieves better outcomes than a standard state agency care coordination program.
“This new approach, of integrating behavioral health care into care coordination services for youth with intellectual and developmental disabilities, will offer access to mental health care for a population that has traditionally been underserved, which has huge public health implications,” said Gladstone. “An organized approach to early identification and treatment offers a significant opportunity to prevent the onset of mental health disorders and improve the lives of teens with disabilities.”
The researchers will engage 780 teens ages 13-20 who have intellectual and developmental disabilities and their families and will follow their health and experiences within the health care system for 24 months. Recruitment will include teens living in urban and rural areas and will be inclusive of all racial and ethnic identities. Half of the enrolled participants will receive care coordination with CHECK and half will receive traditional care coordination services from the state agency in Illinois. Those enrolled in CHECK will be assessed to determine what level of mental health support they need, and then will receive care tailored to meet their needs.
Throughout the two-year study, the researchers will track how teens feel and their health behaviors by asking questions about anxiety and depression and about health, health habits, functioning, ability to manage health care, and self-efficacy. The team also will track how satisfied teens, parents, and health care providers are with the care coordination experience.
“The results of this study will help us understand which care coordination models work best,” said Gladstone. “We hope that this will lead to improvements in how we identify and treat depression and anxiety in teens with disabilities, and potentially reduce barriers to mental health care.”
Gladstone’s partners on the study include Benjamin Van Voorhees, M.D., MPH, UIC professor and head of pediatrics at the UIC College of Medicine; Kristin Berg, Ph.D., UIC associate professor of disability and human development; Rebecca Feinstein, Ph.D., UIC research assistant professor; Michael Gerges, M.A., LCPC, executive director of the CHECK program; Michael Msall, M.D., professor of pediatrics at the University of Chicago; and Cheng-Shi Shiu of the University of California, Los Angeles.