MICHIGAN FAMILY TO FAMILY
Supporting Patients and Their Caregivers Like Family
BY KRISTEN REESE, MICHIGAN PUBLIC HEALTH INSTITUTE PROJECT COORDINATOR
When Kristen Reese’s daughter was diagnosed with a rare genetic neurodevelopmental disorder in 2001, Kristen found herself thrust into the often-frustrating worlds of healthcare and social services.
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During the eighteen months it took to get her daughter’s diagnosis, she was overwhelmed by a multitude of specialist appointments and diagnostic testing. She struggled to figure out the maze of social service programs that all had different eligibility requirements, policies, and procedures. As a single mother of three children, she juggled with the demands of providing care for her child, including medications, managing new equipment, and carrying out new therapies. And while expenses for deductibles, co-pays, and out-of-pocket medical costs were adding up, she lost her job in the insurance industry due to the vast amount of care her daughter required.
For the next four years, Kristen remained unemployed in order to focus on getting the care, support, and services her daughter needed. This meant working with a variety of different providers, including doctors, therapists, case managers, and social workers. Kristen found that one of the greatest sources of help and support was the connection with other parents of children with similar health conditions. She found other parents understood the challenges she faced, and their help was vital in improving her ability to make the best care decisions for her daughter. With that support, over time, Kristen learned how to navigate the systems providing services to her daughter.
