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.

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.

Fast forward twenty years and Kristen is now employed full-time, and her daughter is getting the care, supports, and services she needs to live her best life. Thanks to the skills and knowledge Kristen gained from her experience, she currently works in a position that allows her to share this experience to help other parents struggling with new situations and complex challenges related to raising a child with special health care needs. This position is with MPHI as Project Coordinator for Michigan Family to Family Health Information Center.

Michigan Family to Family is a grant project funded by the Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) under grant H84MC26214. Michigan Family to Family is uniquely able to help other families because it is staffed by family members, like Kristen, with real-life experience navigating complex healthcare and other service systems. They work with families of children with any disability or special health care needs, along with the providers who serve them.

Michigan Family to Family provides information, education, training, support, and referral services to families across the State of Michigan, as well as offering a repository of resources on their website. One of the virtual trainings provided by Michigan Family to Family, Navigating Healthcare, gives Kristen the opportunity to share tips and tools she learned along the way with other parents of children with special health care needs. “I enjoy empowering families to be knowledgeable, equal partners within the healthcare system,” she said. “I get to share what I wish I knew when my daughter was younger.”

Michigan Family to Family staff also collaborate with health and social service systems to provide input and guidance on health programs and policy whenever possible. They focus on partnerships, outreach, and providing families with the knowledge they need to be informed decision-makers.

When Kristen reflects on how she ended up at Michigan Family to Family, she can’t help but wish that this type of support existed when her daughter was first diagnosed. “I remember how alone I felt,” she said, “Having someone available to help, who actually understands what you are going through, means everything when you’re struggling.” This memory is what drives her to share her knowledge and experience with other families. “My goal is to help make navigating healthcare and other service systems easier for the families I connect with.”

Services provided by Michigan Family to Family are free to families and professionals. There is a Family to Family project in each state, the District of Columbia, five U.S. territories, and three Family to Family projects serving tribal communities. Each Family to Family project is staffed by highly skilled, knowledgeable family members who have first-hand experience and understand the challenges faced by families of children with special health care needs. These qualified employees provide critical support to families, particularly families of children with complex medical needs and those from diverse communities.

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