Project to Improve Mental Health Support Benefits DSCC Teens

The B.E.S.T. study looks at how care coordination services that include mental health support can help teens with intellectual and developmental disabilities.

The teenage years can be a challenging time for all teens, including teens with intellectual and developmental disabilities (IDD).

Is your teen or young adult feeling sad, stressed or overwhelmed?

Consider joining the B.E.S.T. study. B.E.S.T. stands for Behavioral Health Stratified Treatment (B.E.S.T.) to Optimize Transition to Adulthood for Youth with IDD. 

The B.E.S.T. study wants to know if care coordination services combined with mental health programming can help teens with IDD live happier and healthier lives. 

All Division of Specialized Care for Children (DSCC) participants receive care coordination services. B.E.S.T. study participants receive access to additional behavioral and mental health resources and support.

DSCC participant Lily Kohtz, 19, (pictured on the left in the above photo) says her mental health has improved since taking part in the B.E.S.T. study.

Lily has spina bifida, uses a wheelchair and has difficulty with anxiety and depression due to her disabilities.

“I think a lot of people don’t connect anxiety or depression to having a disability,” she said. “The B.E.S.T. study has helped me talk about these things. We all have bad days, but depression is worse. Understanding how disability and mental health are tied together and having strategies to use to help me cope has really helped me.”

Lily says she’s enjoyed the online group sessions, where she now meets monthly with four other teens and a group leader. All meetings are confidential. 

“We go over coping strategies such as controlling your thoughts and getting rid of the negative. I frequently use the skills we’ve learned and feel like my mental health has improved,” she said. 

Lily’s mom, JoAnn Watkins (pictured on the right in the above photo), agrees that the study has benefitted Lily in many ways.   

“I’ve seen a positive difference in Lily since she started with the B.E.S.T study. She’s using the skills she’s learned, and you can really see the improvement in her attitude and overall mental health.”

The study began recruiting participants in late 2022. More than 250 DSCC participant families have enrolled in the study so far. 

Eligible DSCC participants must be enrolled in DSCC’s Core Program or Connect Care Program. (Please note that DSCC teens enrolled in the Home Care Program are not eligible to participate.)

The B.E.S.T. study is a free and voluntary project. Teens can join the study if:

• They currently have a DSCC Care Coordinator and are enrolled in DSCC’s Core or Connect Care programs.
• They are between 13 and 20 years old.
• They have an intellectual or developmental disability.
• They can comprehend at a fourth-grade or similar level.
• They can read and speak English.
• They have a computer, tablet or smartphone they can use to access the internet.
• They have permission from their parent, caregiver or guardian (if they are under 18).

The B.E.S.T. study team developed the project with input from a group of B.E.S.T. Study Scholars. These scholars are teenagers with IDD who tested and reviewed all of the B.E.S.T. study materials.

Teens who join the study are put into one of two groups:

• Group A receives care coordination services as usual from their DSCC Care Coordinator.
• Group B receives care coordination services and mental health support from the B.E.S.T. team. This support is based on each teen’s needs and can include:
  
  • Mental health education
  • Online group sessions
  • Caregiver education and support

The study is a virtual program that will continue recruiting through December 2025.

The B.E.S.T. study is a partnership between DSCC and the University of Illinois Hospital and Health Sciences System (UI Health), the University of Illinois Chicago’s (UIC) Department of Disability and Human Development and the UIC Department of Pediatrics.

The principal investigators are Dr. Benjamin Van Voorhees and Dr. Kristin Berg.

The B.E.S.T. study team includes mental health professionals from Illinois, California and Massachusetts. They are all working together to find a way to promote the health and well-being of teens with IDD.

You can learn more information for both teens and parents/caregivers on the B.E.S.T. study website.

If you would like to join the study or have questions, please email the B.E.S.T. study team at beststudy@uic.edu or call (833) 732-5778.

If you choose to join, you and your family can support research that helps other teens and families.

Both parents/caregivers and teens must agree to be in the study. (Note that if a teen is their own legal guardian, they can participate alone or with a parent/caregiver if they choose.)

Those who join will be compensated for their time.

We’re excited to continue our partnership on this important research project!