This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.
Approximately
1.7 million Michiganders are unpaid caregivers. They help their friends, family members, and neighbors with everything from household chores and grocery shopping to personal care like feeding, bathing, dressing, and toileting. According to the
Center for Research and Transformation (CHRT), these caregivers are more likely to report poor financial status and social isolation. They are also less likely to take care of their own health, mental health, and dental needs. A
2023 AARP survey found that caring for a loved one dramatically increased caregivers' stress, anxiety, and depression.
Respite care, which refers to temporary care intended to give unpaid caregivers a break, has multiple benefits for caregivers. It provides essential downtime to de-stress, take care of personal business, and recharge in order to continue providing kind, effective, and reliable care. However, it can be difficult to find for many unpaid caregivers.
Older adults are not the only population receiving care from family and loved ones. Many parents of children with special needs provide round-the-clock care from birth, through adulthood, and throughout the parents’ old age. Eric Paad is one of those caregivers.
In January 2023, Paad found out he needed to have an out-of-state brain surgery. He scheduled the procedure for the following June so that he and his wife would have plenty of time to make respite care arrangements for their adult daughter, Dorothy Paad, while they were gone. Dorothy Paad lives in her own apartment, works as an instructional coach for the
Northern Michigan University School of Education, has published four children’s books, and is active in her community. However, she requires help performing all activities of daily living.
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Eric and Dorothy Paad.
As the founder of Marquette-based nonprofit
Caregiver Incentive Project, Eric Paad knew how and where to apply for the help that his state-appointed local agency was supposed to arrange. That help never materialized. Luckily, through his connections, he was able to find a private caregiver the day before his scheduled surgery. He paid for several days of respite care out of pocket.
"There are some options for respite care, but it's almost impossible. I mean, they just make it so hard," Eric Paad says. "We were able to find enough care, caring people that we were able to employ. And yes, she stayed in her apartment where she's at, where she is absolutely the most comfortable."
Eric Paad’s wife usually stays with Dorothy Paad from 10 a.m. Friday morning until 8 a.m. Monday morning. Eric Paad used to drive 40 miles one way to stay with Dorothy Paad every weeknight until they were able to engage other caregivers. The couple, who are in their late 60s, remain on call 24/7 in case a caregiver cannot make it, or other needs arise. Paad asserts that regular respite care allows caregivers to clear their minds, step back, and take note of everything in a way that’s not possible when they’re "in the middle of it."
"It helps you. It helps clear the anxiety. You can actually take a breath and also get other things done that we all have to do," he says. "But you have to have the comfort of knowing that it's there and it's dependable."
Help is available
Paad is not alone. Many of Michigan’s unpaid caregivers seeking respite face long wait times or reduced options due to both the expense and the shortage of direct-care respite workers. State and federal programs can help.
Medicaid covers respite services for those who receive private duty nursing services and some who are part of the Children’s Special Health Care Services program. The latter can receive up to 180 hours of respite services per family over a 12-month period. A qualified provider must provide the respite care.
Michigan Area Agencies on Aging and other local service provider agencies can provide respite for caregivers through the Title III-E National Family Caregiver Support Program under the federal Older Americans Act and the state-funded Senior Care Respite Fund Merit Award Trust Fund and State Caregiver Support Program. Those qualifying for these respite programs include adults caring for people 60 and over; adults providing care for people with Alzheimer’s disease and related disorders; relatives (not parents) age 55 and older providing primary care to children under 18; and parents or relatives age 55 and older who care for adults ages 18-59 with disabilities.
The MI Choice Waiver Program provides eligible adults Medicaid-covered services like those provided by nursing homes in their own home or another residential setting, including adult day care and respite services. And the federal Program of All-Inclusive Care for the Elderly (PACE) provides a comprehensive service package that supports adults 55 and older in living at home while receiving services.
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Scott Wamsley.
"By allowing older adults to remain in their homes and communities longer and providing respite care, primary caregivers experience less caregiver burden and burnout – and that can extend the time the caregiver can provide care, thereby delaying more costly facility-based services," says Scott Wamsley, director of the state of Michigan's Bureau of Aging, Community Living, and Supports. "This also prevents the cost from being transitioned over to the state through Medicaid when the family can no longer pay the long-term care facility room and board. Paying respite care services to a family caregiver is significantly less than what the state would pay to a long-term care facility over time."
Older adults looking for information on respite services can contact their local area agency on aging, PACE organization, or MI Health Link Integrated Care Organization. For children or adults with special needs, Michiganders can contact their local prepaid inpatient health plan, health department, or the state’s Family Center for Children and Youth with Special Health Care Needs.
"Respite care provides the caregiver the important opportunity to step away and rest, so they can return with renewed energy and focus," Wamsley says. "It also allows the aging adults to maintain their independence and rediscover who they are, separate from their family caregiver, while also enjoying new experiences and interactions."
Voucher program incentivizes paid respite care by family or friends
An innovative new respite option is now available for caregivers of older adults living in Livingston, Macomb, Monroe, Oakland, St. Clair, and Washtenaw counties. An
Area Agency on Aging 1B (AAA1B) voucher program launched Oct. 1 provides unpaid caregivers up to $575 to pay for respite care.
Unpaid caregivers may use the vouchers to engage a professional caregiver through AAA1B's partner platform,
CareLinx. However, the program emphasizes using the vouchers to pay family members, loved ones, and neighbors to provide respite care for several reasons. The shortage of direct-care workers makes it difficult for families to find professional respite coverage. Having respite care provided in the home eliminates a lot of the worry, stress, and extra work required to transport a loved one to a facility for respite care. And both the caregiver and the person receiving care feel more comfortable having someone they know providing the respite care.
"For someone with dementia, having a stranger in the home that they've never met before might be upsetting," says Katie Wendel, AAA1B director of planning and advocacy. "If you're able to lean on your known support network, we hope you can strengthen those relationships and have a really positive respite experience."
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Katie Wendel.
To qualify, unpaid caregivers need a referral from a physician, therapist, senior center director, or other professional. Family members or friends providing the respite care must pass a background check. During the first month the program was offered, 30 family caregivers took advantage of the vouchers.
"We're really excited to bring something new to the state of Michigan," Wendel says. "This is another tool that we can offer to our community to help meet their needs. Our goal is to surround a family caregiver with the support they need, so they can keep caregiving as long as they and their loved one desire."
Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children's books. You can contact her at [email protected] or www.constellations.biz.
Katie Wendel photos by Nick Hagen.