“Let’s Try a Different Way”

Wrapping up her fellowship this spring with the Minnesota Leadership in Neurodevelopmental and Related Disabilities (MNLEND) program, Agnes Cole was also juggling an administrative role at an area service provider and running her own non-profit organization dedicated to supporting people with disabilities to access services.

Cole (MNLEND 2022-23) is founder and executive director, along with her husband, Prince, of the Disability Motivational Network , a nonprofit organization offering support groups and other services to people with disabilities. Both Agnes and Prince were born in West Liberia, Africa, with physical disabilities, and their disability experiences created a passion to help others with disabilities overcome challenges.

Many of the people who come to the organization for support have immigrated to the United States, and they often aren’t aware of important disability services available in their communities, she said.

As a fellow getting to know some of the ongoing research projects at the Institute on Community Integration, she was particularly intrigued with the work of the Residential Information System Project. RISP is a longitudinal study of supports and services for people with intellectual and developmental disabilities (IDD). It is one of three Longitudinal Data Projects of National Significance funded by the Administration on Community Living, and it tracks the living arrangements of people with IDD who are receiving services.

“What really struck me was the large number of people who want to have their disability services delivered at home,” she said. “The waiting lists for receiving home and community-based services (as opposed to large institutions or intermediate care facilities) is so long. We need to allow family members to take care of their loved ones, and many are not even aware of their options.”

Cole contributed to a forthcoming ICI Policy Research Brief that explores the marked differences in waiting times for services delivered in institutional facilities compared with home-based services, which are delivered under a waiver system.

“Agnes is curious and a real advocate,” said Sheryl Larson, principal investigator of the RISP project. “It was very clear to her that what was happening needs to change. She was very much part of the team and made sure that when we made the policy recommendations, they made sense to her.”

Cole earned a master’s degree in healthcare and human services administration from St. Mary’s University in 2018. In addition to her nonprofit work, she also works part time in an administrative role at Thomas Allen, a provider of services for people with disabilities.

“The LEND program gave me the insight to look at service delivery from a different perspective,” she said. “Before, I just had the experience of working with the system as someone supporting my husband. Now I’m able to speak up and say, ‘let’s try a different way’.”