Patients with developmental disabilities learn life skills through mentorship program

Finding a new doctor, changing family and peer relationships, learning to live independently, and engaging with college or work can be challenging for young adults. This transition process is even more difficult for individuals with intellectual and developmental disabilities.

Through a new program at the Transition Medicine Clinic at Baylor College of Medicine, young adults with disabilities can learn essential self-care and transition navigation skills with the help of a mentor who has been in their shoes.

Funded by a grant from the Texas Council of Developmental Disabilities, the Transition Medicine Clinic provides a six-month curriculum that trains older adults with intellectual and developmental disabilities to mentor younger adults who are learning how to transition from pediatric to adult healthcare.

“I think what makes the program unique is the peer-to-peer relationship,” said Dr. Kathryn “Jordan” Kemere, assistant professor and physician in the Transition Medicine Clinic. “It’s significant that the mentors are 5-10 years ahead and saying, ‘I went through some of these things, and some I did well, some I didn’t do well and some I’m still learning to do.’ It’s been beautiful to see them working through it side by side.”

Kemere explains that between 18 and 25 years old is when several changes begin to occur, not only in terms of healthcare but also in personal growth.

“Learning how to navigate their own insurance and make appointments happens over time, but there’s also a lot of change going on for them personally,” she said. “They’re thinking about what to do after high school and learning how to take care of themselves mentally and physically like all adults do.”

Every month, the mentors and mentees meet for a two-hour group session in which one of the mentors presents a topic such as how to write a medical summary, navigate insurance and community support, or ask questions at a doctor’s visit. Sessions also cover other topics, like physical and emotional self-care, transportation options, and opportunities for future employment and education.

“During the group session, mentees pick a goal related to the topic and develop an action plan with coaching from their mentor,” Kemere said.

Although the group meets once a month, the mentors set up phone or video conferences with their mentees in between meetings to work on the goals discussed in the previous session.

Not only is the program a learning opportunity for the mentees, but it is also a first-time job for many of the mentors. They learn professional skills such as motivational interviewing, problem solving, and group conversation.

“The grant allows us to pay the mentors for their work and they really treat it as a job,” said Dr. Ellen Fremion, assistant professor in the Transition Medicine Clinic. “They come dressed professionally and they take it very seriously.”

Fremion adds that the mentors also wanted to invite representatives from organizations like United Healthcare, Community STAR Kids and Texas Medicaid STAR+PLUS to speak and have a Q&A during the group sessions. “It’s special not only for the mentors to have those resources, but also for the service representatives to see our program and interaction between mentors and mentees,” Fremion said.

The program began in summer 2019 and the first class will graduate this December. Fremion and Kemere said they hope that the program continues to grow and reach more people outside of Baylor and throughout Texas. The next step for this four-year grant is to develop a web-based version to make the program more accessible to those not able to meet in person.

“I have already seen increases in mentee self-esteem,” Kemere said. “When you see someone who has done it before, looks like you and has gone through some of the same things then your confidence goes way up and you think ‘I can do this.’

-By Kaylee Dusang