The Southeast Michigan Senior Regional Collaborative, a network of 35 organizations serving senior adults, has formed the first caregiver coalition in the state.
Called Changing the Care Conversation, the coalition is facilitated by caregivers focused on caregiving policy and resource concerns. The group’s meetings address themes such as mental health support, education, caregiver advocacy, respite, resources and support with a focus on the cultural diversity of southeast Michigan, said Kristie King, executive director of the Senior Regional Collaborative.
“The main commitment was making sure that we center the voice of the family caregiver, and that we really highlighted caregivers of color, Black and brown populations, understanding that there are some things about communities of color that may differ from the majority population when it comes to caregiving,” King said.
The priorities of the coalition were chosen by the members who are caregivers.
“We came up with activities and brainstorm activities for the caregivers who are part of the coalition to get their feedback of what they wanted to see our coalition do,” said Callie Bruley, one of the facilitators of the CTCC coalition.
In each coalition meeting, a facilitator starts a conversation, and caregivers can discuss what they experience, and what support they may need.
“It’s really about what caregivers want to see, what they experience day to day and what they think could make their lives easier as a caregiver,” Bruley said. “Those services that do exist, sometimes do not fully meet the need. It’s making sure we know what programs are out there… but also it’s identifying there is a gap, what can we do to close that gap and sharing the caregiver’s voice to do that.”
An increasing number of people around Michigan and the United States find themselves taking care of a loved one, according to a report from the National Alliance for Caregiving and AARP. The Center for Health and Research Transformation has estimated that about 1.7 million caregivers live in Michigan.
The coalition is funded by the Michigan Health Endowment Fund and the Changing the Care Conversation program, a national movement to improve support for family caregivers. It’s part of Michigan extension of a 10-state project funded by Grantmakers in Aging. Outreach began last year with nine caregivers called “caregiver champions,” the first caregivers to join the coalition and now there are 30 members.
“We didn’t want this to be just another coalition or another initiative that was led by organizations,” she said. “We really wanted to center the voice of the family caregiver, and so that’s what we really began to do,” King said.
CTCC program facilitator Jane Grant said conversations within the coalition meetings are learning opportunities. “What I found is that so many people are not aware that there is support out there,” Grant said. “We are a support system that will work with them and do whatever we can to give them the rest benefit and resources that they need. They’re not alone.”
Facilitators are also caregivers. As a family caregiver, Bruley dedicates her time advocating for support in Michigan because of her personal experience. “My mom and I were caregivers for my dad. Throughout his life with Parkinson’s… even back in high school I was a caregiver,” Bruley said. “Now I support my mom and I’m a caregiver for my mom. She’s got a lot of health issues. Many I think, because she pushed herself really hard taking care of my dad for as long as she could.”
The coalition also supports initiatives for state legislation centered on caregivers and caregiver respite. This includes working to bring the Home Health Program, which provides caregivers education and structured support, to Michigan. It also supports legislation through the Paid Leave for All coalition, which advocates for caregivers to receive paid time off for caregiving and access to paid family leave. Another initiative targets better long-term access to services such as Medicaid.
“People are living longer, you may live longer and need caregiving services. It’s going to touch everybody at some point in time. That’s why we have to be so diligent and consistent about fighting for these changes,” Grant said.
The group’s next steps are to grow the coalition through engagement and outreach. Even some out-of-state caregivers have joined. “It’s hard work and it’s heart work, and being there for your family in a different manner and changing your life and what your life looks like, that voice has to come from the family caregiver,” King said.
The CTCC caregiver coalition meets on the fourth Wednesday of each month at 11 a.m. and 6 p.m. For more information and to get involved, call 888-341-8593 or email careconversation@miseniors.org.
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