Wisconsin Board for People with Developmental Disabilities: Family caregivers fill gaps, pick up pieces, and are running out of time

The relentless and continual shortage of paid caregivers is driving many families to the brink and is costing Wisconsin businesses and the greater state economy.

“Stable care infrastructure is essential if communities are to remain livable,” said Beth Swedeen, Executive Director of the Wisconsin Board for People with Developmental Disabilities. “Right now, if you need care, there are few options, no workers, and no relief. There is no place to go and no way to stay in your own home.”

Family members provide 80% of the care for children and adults with disabilities and older adults. They are stretched thin. More than 50% of caregivers spend more than half of the hours in a day—every day—caregiving.

“Families are caregiving all the time. Every day, every night, every weekend. Often for years, even decades,” said Swedeen. “Family caregivers know if they don’t do it, there is no one else. Many also know they can’t do it forever.”

Family caregivers are being forced to leave the workforce because they can’t find help. More than 40% have left the workforce entirely and another 20% have been forced to reduce their hours to part-time.

“Quality professionals are retiring early or leaving the workforce in their prime working years to care for siblings, adult children with disabilities, older adults,” said Swedeen. “No matter who you are, this crisis is coming for you. One fall, one illness, one accident that impacts a caregiver or creates a person who needs care and families are left to figure it out on their own.

Last year, almost 500  family caregivers told Survival Coalition in a statewide survey how the caregiver worker shortage affected their ability to work, their finances, and their physical and mental health.

“Wisconsin is at a critical juncture,” said Swedeen. “We must invest in creating a stable, well paid caregiving workforce to have a stable Wisconsin workforce.”