Supporting Aging Adults with Intellectual and Developmental Disabilities (I/DD) and their Families

Planning Forward Grantee:  St. Louis Arc


Project Background

More individuals with developmental disabilities are living longer and face age-related changes in their health, retirement, finances, mobility, and community involvement. Individuals with I/DD are also outliving parents who are often their primary caregivers. As these caregivers continue to grow older, they often become less able to provide care for their loved one as they may also have to address their own health problems, physical disabilities, and other age-related concerns. This inability to care for their loved one with I/DD causes additional stress and anxiety on current care and on planning for the future. With a growing number of Missourians who are aging, our system must better understand these unique needs to adequately support older individuals with developmental disabilities and their caregivers during this life stage.

Project Description

With this project, St. Louis Arc will work to build capacity for aging support in Missouri through a demonstration of group education and individual futures planning services for aging individuals and families in the St. Louis area; development and testing of robust tools and materials to guide and support group education and futures planning for aging individuals; and deployment of a specialized training program on aging and I/DD for direct support professionals and community care providers.

The impact of the project will be to increase awareness, knowledge and access to supported futures planning for aging individuals and their families in St. Louis, and to establish a successful model for group education and futures planning services that can be replicated and sustained throughout the state and in other states using Charting the Lifecourse tools. In addition, the project will design and implement an enhanced training program for direct support professionals so that both developmental disability agencies and generic aging providers can competently serve aging adults with I/DD who access their services.

Mary Jo's Impact Story:

“I knew I needed to be more proactive, so that they have what they need when I’m no longer around,” said Mary Jo, who is the mother of Scott, age 38, and Michelle, age 31.

That’s what prompted the family to participate in St. Louis Arc’s Planning Forward sessions this past year. Mary Jo actually participated in two of the sessions, one with each of her children.

“We’d been to the Arc workshops before and this seemed very thorough, and it included the young adults in a way that was very positive,” she said. Individuals and their family members participated together in the Planning Forward groups, but the format allowed for separate times to share with peers.

“It has helped us to figure out what we need to work on—both for the individuals themselves, and for me as a parent-- so that they can be prepared and have a stronger future,” said Mary Jo. “They need to take responsibility but I have to be working for it too.”

One area the family has focused on is Healthy Living. Using some of the strategies discussed with the groups, Mary Jo worked with her family members so they could learn about their different medications and why they were prescribed. Both of her family members were able to review their own medications with their doctors, and it helped them to understand why and when the medications were necessary.

“It clarified for them why they had those medications, and their self-advocacy even led to some med reductions for each of them,” she said.

“I think it helped them to take ownership, and even, to be more self-aware of their own needs, abilities and strengths,” Mary Jo said. “It’s helped me to organize and prioritize, so that planning for and taking these steps is not so overwhelming.”

“It’s good for our family to be able to communicate about these issues, and it helps to be in discussions with other parents and families who are going through the same experience,” she said.


Impact Story:

Through the Planning Forward sessions, families have expressed interest in thinking “outside the box” when it comes to independent living options for their family member.

“For many families, there is a recognition that government funding may not be able to meet their needs in a timely manner,” said Sharon Spurlock, Arc’s senior director of family support. “These families are interested in learning more about innovative options for housing, and creating new opportunities for their family members with disabilities.”

Eight families who participated in the Planning Forward series identified a common interest in innovative housing, and they are working together to research and figure out next steps. The group is currently looking into housing programs offered in other states, and learning about potential opportunities in the St. Louis area. They hope to continue to learn more about how to leverage CRA loans, identify community leaders in affordable housing, and creatively consider real estate opportunities.

“These families are interested in advocating for relationship-focused housing initiatives that provide daily support while also maintaining connections to the community,” said Spurlock.

Project Lead

Katheryne Staeger-Wilson
(417) 895-7446

More Information

Planning Forward Project Website