Written by Stephanie M. Bond, CLL/UCEDD Newsletter Editor
When Jacqueline Devereaux started planning her daughter Carla’s graduation, she realized she not only needed to plan the cake and decorations, but the rest of Carla’s life. Her daughter, who is on the autism spectrum and does not use language to communicate, would need lifelong help.
“In school, supports kind of happen automatically for students with disabilities,” said Jacqueline, “but entering adulthood, those supports fall away. When kids transition out of school, it’s a feeling of ‘what do we do now.’ Many parents of adults between ages 20 and 30 find themselves trying to navigate systems for their loved one with disabilities.”
Jacqueline realized she needed to figure out if she would be able to continue to work, what her daughter would do all day, and what programs could help Carla. Jacqueline has advocated for people with disabilities for more than 40 years. She serves on the board of directors for Oklahoma Parents Network and is a member of the Family Leadership Network, as well as a Family Mentor for the CLL Family Mentorship Program, which mentors students in the OKLEND program. She is also the current co-chair for the CLL/UCEDD and Oklahoma LEND Consumer Advisory Committee (CAC).
As parents begin future planning for their children, Jacqueline suggests that parents access social security benefits for their children. She suggests exploring resources like the Department of Rehabilitation Services, which offers job training, if applicable. Also, parents may want to research if guardianship or guardianship alternatives could help their adult child.
“Think about what life will be like for this adult,” said Jacqueline. “What do you want for your adult child, now and in the future? What can you afford? What can you do while waiting for services to be available?”
As both mom and daughter have aged – Jacqueline is 67 and Carla is 45 – Jacqueline’s planning has turned to preparing for when she’s no longer here.
“I have a lot of family support,” said Jacqueline, “and we’ve put a team around Carla that, if anything happens to me, will make decisions for her. I’ve tried to put protections in place for her.”
Jacqueline has full guardianship of her daughter, as does her niece, who can step in immediately if needed. She has also established, with her attorney and the rest of the family, that Carla will always live in her family home.
“It can be a tedious process, trying to navigate all the adult systems,” said Jacqueline, “but planning sooner rather than later helps the whole family.”
Long-term planning information and resources:
Social Security Information for Adults with Disabilities
Oklahoma Department of Rehabilitation website
Information about guardianship from LegalAid
Information from the OKDHS Developmental Disabilities Services Division
DDS guide about guardianship and alternatives to guardianship
OKDDS guardianship alternatives
Oklahoma STABLE website