Alesha Thomas, left, and Kelsey Ledezma-Rebollo, right, and her family in Santee on Feb. 4. Both women are both involved in a pro-bono clinic for parents with disabilities through the University of St. Augustine for Health Sciences in San Marcos. Courtesy photo
Originally published on The Coast News Group
SAN MARCOS — Staff and students in the occupational therapy program at the University of St. Augustine for Health Sciences in San Marcos are working with community partners to fill a care gap for families with disabled parents through a virtual, pro bono clinic.
The clinic came about last year, when assistant professor and doctor of occupational therapy Amy Lyons-Brown was overseeing a group of OT doctoral students who wanted to complete a capstone project on parents with disabilities.
They connected with Alesha Thomas, the founder of the San Diego nonprofit Adaptive Parent Project, which empowers parents with disabilities through resources and information. During weekly capstone meetings with Thomas, Lyons-Brown said it was apparent that the OT community could offer significant support to parents with disabilities.
Now, Lyons-Brown and a group of OT students from the University of St. Augustine for Health Sciences , together with Thomas, lead a pro-bono clinic every week via video call.
“This is not something that you’ll see anywhere else,” said Lyons-Brown. “In our clinic, everyone is working together and collaborating. The students are able to give their input, the parents give their input, and we all work together on the common goal of helping a parent with a disability be a better parent.”
The clinic provides a space for parents to share challenges and successes and to find support, while also teaching students to be disability-informed and become better healthcare providers. Students can also count the clinic toward their field work for their OT dissertation.
Thomas, who has cerebral palsy and uses a wheelchair, said she would have benefited greatly from a group like this when her son was born.
Her desire for community with other disabled parents is what motivated her to establish the Adaptive Parent Project, where she makes videos with tips and product recommendations for other disabled parents.
“Parenting with a disability can be so isolating,” Thomas said. “An able-bodied parent doesn’t sit there and go, ‘how am I gonna pick up my baby from the bassinet?’ You have so many other factors that you have to juggle.”
Lyons-Brown said this partnership with Thomas and other people in the community is what makes the clinic work. Including people with lived experience can build trust and rapport with clients and create an environment that feels safe and accepting.
“There’s that concept of a safe provider. Alesha and I have talked a lot about it,” Lyons-Brown said. “This is a space they can feel present in, and not feel judged.”
Another key member of the group has been Kelsey Ledezma-Rebollo of San Diego, a mother of a young son. She had previously connected with Thomas via social media, and the two had relied on each other as sources of support as they navigated parenting with a disability.
Ledezma-Rebollo became disabled at age 12 after being paralyzed from a spinal cord injection, and uses a wheelchair. She said she has experienced a lot of medical neglect in her life, often because providers are not trained to treat patients with disabilities.
When Thomas invited her to join the clinic through St. Augustine, Ledezma-Rebollo readily accepted.
“I’ve had a rocky time dealing with my body. I’ve been handed off repeatedly because no one wants to talk about what happens,” she said. “Alesha and I connected through social media. She asked if I wanted to participate, and I was definitely struggling with my son, so I was like, ‘yeah.’”
The weekly clinic looks a bit different each time, Lyons-Brown said; it’s tailored to what the parents want to talk about. They may talk about ways they can adapt to meet their children’s needs, or how they can advocate for themselves with their medical providers.
“We don’t have the limitations of traditional insurance. It’s a little more quality in terms of what we’re doing, instead of the quantity,” said Lyons-Brown. “We have some clinics that are several hours long.”
The clinic also provides a great way for parents to get support from other disabled parents who are in the same boat as them. Many opportunities to meet up with other moms are based around jogging or pushing strollers, Lyons-Brown said, or other activities that may not be accessible to someone with a disability.
On Feb. 4, the clinic held its first in-person event for parents with disabilities in Santee. Thomas said they hope to host another in-person gathering.
“When you get together and you get to see someone who, not only do you see a reflection of yourself, but also understands your struggles as a parent with a disability, it’s one of the most magical things on the entire planet,” Thomas said.
The University of St. Augustine for Health Sciences in San Marcos offers several rehabilitative and health science programs, including occupational therapy, physical therapy, and speech-language pathology.
The clinic is currently offered to parents in California and Arizona, and Lyons-Brown said they hope to expand it to Florida and Texas, where the university has other campus locations.
