Even with a background as an occupational therapist, Sue Rosa, 76, wasn’t fully prepared for the grueling daily responsibility of caring for her husband, Mark, who had multiple sclerosis, a progressively debilitating disease that attacks the central nervous system.
She helped him move from the bed to his wheelchair each morning, shower and get dressed, and shuttled him to and from medical appointments. Tending to his needs during the night deprived her of much-needed sleep.
Meanwhile, Rosa’s career suffered, and she covered the cost of home health aides, special equipment and other expenses—totaling $16,000 one year—before having to retire early, at 62, to care for her husband full time until his death in 2011.
The experience led Rosa to become a volunteer advocate for the Caregiver Challenge of Northwest Wisconsin and to her appointment last year to the 29-member Governor’s Task Force on Caregiving.
“What Wisconsin needs to know is what family caregivers need,” said Rosa, who lives in Cable. “It can be very expensive to care for somebody at home.”
AARP Wisconsin pushed to have two key bills included in the recommendations the task force sent to Gov. Tony Evers (D) last month. The Wisconsin Credit for Caring Act would create a $1,000 nonrefundable income tax credit for certain caregiving expenses, such as home medical supplies.
The Caregiver Advise, Record, Enable (CARE) Act would require hospitals to inform designated family caregivers when a loved one is going to be discharged and to provide instruction for medical care they will need to provide at home.
The CARE Act doesn’t cost the state anything, said Helen Marks Dicks, AARP Wisconsin’s advocacy director on state issues.
“The caregiver tax credit does cost money,” Dicks said. “But in the long run, aren’t we better off giving families financial support to help care for loved ones in the community, instead of requiring Medicaid for nursing home care?”
Wisconsin’s 580,000 family caregivers contributed $6.9 billion worth of labor in 2017.
Public supports aid bills
Expanding resources for both family and professional caregivers has wide support among Wisconsin residents.
Two-thirds of people surveyed strongly support tax credits for caregiving, according to a recent report by the task force. And more than three-quarters of respondents said they strongly support the CARE Act proposal.
It’s an encouraging indication of how lawmakers might respond to the measures, said Dicks, who is also a task force member.
She noted that the pandemic has fueled the urgency of expanded caregiver supports.
Caregiving becomes more complex as people with lifelong disabilities age, said Lisa Pugh, cochair of the task force and executive director of the Arc Wisconsin, a group devoted to people with developmental disabilities. She noted that a quarter of family caregivers for those individuals are themselves over 60.
The state budget will be strained next session due to the pandemic. But Dicks is optimistic that the caregiver tax credit will be included in Evers’ 2021–23 budget proposal early next year.
Go to aarp.org/wi to learn more about AARP Wisconsin’s advocacy efforts.
Joanne Cleaver is a writer living in Portland, ME.
More on Advocacy
- Advocate for Family Caregivers, Others by Becoming an AARP Volunteer
- Learn about AARP Wisconsin's Many Advocacy Efforts