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When the weekend hired caregiver for Christine Lidbury’s father quit earlier this year, she tried to find a replacement to no avail. Grateful that she still had a good weekday paid care provider, she took over the weekend duties.
Her father is in his 80s and has advanced Parkinson’s disease and dementia. “And now Dad has gone into steep decline,” Lidbury said Tuesday.
She cut her work week to four days and on Fridays travels an hour to her father’s home, staying with him through Sunday. Lidbury prepares meals, for which she has to puree her dad’s food. She provides his personal care, including toileting and giving him his medication, and helps him to bed.
After what may have been a small stroke left him unable to bear weight on his legs, she has had to help him move with the aid of a lift.
Lidbury praises her employer for accommodating her need to shift her schedule. She hasn’t used state and federal family leave laws to get some unpaid time off, however. Lidbury has a chronic medical condition herself that is aggravated by the stress of caring for her dad, so she’s been reserving the family leave time in case she needs it to address her own health needs.
Years ago her father took early retirement and cared for Lidbury’s mother as she grew profoundly disabled from multiple sclerosis. She died a year ago. Lidbury recalled that her father told her once why he had stepped up to provide her mom’s care: “We don’t throw people away.”
Lidbury shared her experience during a Tuesday morning press conference over Zoom, along with four other women all providing care for family members with severe disabilities or other health needs.
The presentation was organized to call on lawmakers to enact policies that would ease the plight of family caregivers. Participating were The Survival Coalition of Wisconsin Disability Organizations along with the Wisconsin Aging Advocacy Network and the Wisconsin Family and Caregiver Support Alliance.
One in five Wisconsin residents is providing ongoing care for a family member, said Beth Swedeen, a Survival Coalition co-chair and executive director of the Wisconsin Board for People with Developmental Disabilities. And 25% of the people who provide care for adults with developmental or physical disabilities are over 60, she noted.
Three out of five caregivers are women, added Lisa Pugh, co-chair of the Survival Coalition, and a majority are people of color. The COVID-19 pandemic heightened the challenges family caregivers were already facing, advocates said.
Family caregivers help provide meals, bathe and dress their loved ones, and perform other necessary tasks, said Janet Zander, advocacy and public policy director for the Greater Wisconsin Agency on Aging Resources and the Wisconsin Aging Advocacy Network.
They transport their family members to appointments and help them connect with social services and other resources. In Wisconsin alone, that work adds up to 490 million unpaid hours of care a year for people with disabilities and older adults, she said — while caregivers also have to juggle their own work and family responsibilities.
“The time has come to support caregiver health and well being in the same way we approach any other public health concern,” said Zander. “We cannot simply stand by while the problem grows larger — we must preserve family caregiving as a viable and sustainable resource by taking steps now to protect families from deteriorating health effects, financial insecurity and stress from searching for resources that may or may not even exist.”
‘Low-hanging fruit’ for policy change
With Tuesday’s call, the participating groups highlighted three policy changes they said could help Wisconsin residents who have taken on the responsibility of looking after loved ones who are elderly, have chronic illnesses, or live with disabilities.
Expanding the state’s unpaid family medical leave law to allow more people to use its provisions. The law currently allows people to take time off without pay to help a parent or child needing care. The group proposes adding care for chronic conditions and including grandparents, grandchildren and sibling relationships in the law’s coverage.
“All family members with the capacity to help should be able to take unpaid leave, without fearing that they’ll lose their job,” said Tami Jackson, a policy advocate for the Survival Coalition. “Working grandparents are taking care of grandkids. Working grandchildren are taking care of their grandparents. Siblings are caring for each other. And right now, under current law, those relationships do not qualify [a person] to take family medical [leave].”
Expanding resources for Aging and Disability Resource Centers (ADRCs), local and regional agencies that provide support and guidance to caregivers. ADRCs run on federal grants for helping caregivers of people who are 60 or older. Draft legislation would fund an additional $4 million in state grants so more centers could provide designated caregiver support staff members and to establish support programs for people who are under 60.
By strengthening caregiver support the state could reduce nursing home admissions for people needing care, the organizations contend, saving the state’s Medicaid program as much as $6,000 a month for every person who is not admitted to a nursing home.
“Supporting our family caregivers helps maintain their health and extend their ability to provide care at home and for the people they love for a longer period of time,” Jackson said.
Creating a partial tax credit for qualified expenses that family caregivers bear. Those could include transportation, meal preparation, durable medical supplies and home modifications to accommodate a person with a physical disability, said Jackson. “These are sometimes expensive costs, but they’re often covered by caregivers with their own money,” she said. “And out-of-pocket expenses often leave less money for caregivers’ own health-related expenses and retirement savings.”
The proposal is modeled on bipartisan legislation that was introduced in the 2019-20 legislative biennium, but didn’t advance further despite a survey showing broad support among voters. The proponents estimate it would cost the state about $125 million per year in lost revenue.
Jackson called the three proposals “the tip of the iceberg, the simplest, low-hanging fruit” among policies to address family caregivers’ needs. Much more could be done, she added.
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The three proposals are much more limited than provisions that Gov. Tony Evers included in his draft of the 2021-23 biennial budget. Most of those measures, however — the product of a state task force Evers commissioned early in his term to address the twin challenges of paid caregivers and family caregivers —were stripped out early by the Republican majority on the Legislature’s Joint Finance Committee.
“Family caregiver advocates, aging groups, disability groups and others have continued to have conversations in the Legislature about these proposals, and there is bipartisan support,” said Pugh, who cares for her adult daughter with a developmental disability.
“I think caregiving issues don’t impact just one party or the other — they are nonpartisan issues,” Pugh said. Some lawmakers have shared stories with coalition members about their own experiences as caregivers for aging parents or other family members. “So we do believe there’s interest,” she added. “And we do believe there are some champions” for the proposals offered Tuesday.
“We need to grow that list of champions to get this across the finish line,” said Zander.
The allied organizations also debuted a three-minute video in which caregivers speak to the camera about their experiences. The video is one of several planned to circulate on social media in November, which advocates mark annually as Family Caregiver Month to draw attention to the issue.
A link to the video was emailed Tuesday to every Wisconsin state legislator, Pugh said.
The video is called “See Us.” Another of the caregivers who spoke Tuesday morning summed up the challenges she and others face.
“My day starts at, basically, around 5:30, and it doesn’t end until about midnight,” said Deatrice Ash of Milwaukee, who cares for her 19-year-old daughter with a seizure disorder. “So I’m not getting sleep myself. I’m tired and worn.”
From the difficulties in finding personal care workers for her daughter to dealing with her own need for health care to addressing daily obstacles such as how to replace the wheelchair her daughter needs to helping her mother, who is 88, in addition to her daughter, Ash has come to feel perennially exhausted.
“I will be honest with you. We have been abandoned,” she said. “And no one’s listening. No one is hearing me or many others that are in my same position.”
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