For Immediate Release: November 1, 2018

Madison, WI – The Arc Wisconsin joined members of the Wisconsin Family and Caregiver Support Alliance in the State Capitol November 1 in a celebration of caregivers. The event in the Governor’s Conference room at 10 AM kicked off Family Caregiver Month and featured caregiver stories and the presentation of a Governor’s proclamation recognizing the contributions of family caregivers to the state’s economy, estimated at $6 billion.

“Family caregivers are the backbone of Wisconsin’s caregiving industry, providing approximately 80% of all care,” says Lisa Pugh, Co-Chair or the Alliance and Executive Director of The Arc Wisconsin. “Family members of persons with intellectual and developmental disabilities tell us they feel significant stress. In a recent survey 92% of caregivers reported that caregiving impacted their employment. We have to figure out solutions that support family caregivers.”

The Arc Wisconsin was a leader in forming the Wisconsin Family and Caregiver Support Alliance, a group of disability and aging organizations dedicated to supporting and providing resources for individuals who provide care to family members including people with intellectual and developmental disabilities (I/DD).

Thursday’s event featured caregivers telling their own stories and bi-partisan legislators who will speak on the many challenges Wisconsin family caregivers face.

“An estimated 549,000 informal caregivers provide more than 588 million unpaid hours of care annually to individuals with disabilities and older adults in Wisconsin,” says Pugh. “The daily demands of caregiving for individuals with I/DD and older adults can be challenging, and commitment of time and resources that goes into ensuring a loved one’s well-being leaves little time for personal goals, professional duties and planning for the future.”

Consider this data from the Arc’s Family & Individual Needs for Disability Support or FINDS Report released this year:

  • Caregivers reported spending an average of 57 hours each week assisting loved ones with everything from feeding to dressing, providing behavior supports and managing finances.
  • Almost all working caregivers in the survey (95%) report that caregiving has impacted their employment – everything from going in late to turning down a promotion or losing a job.
  • Roughly 9 of 10 caregivers reported some out-of-pocket expenses related to their family member’s disability. One-third (reported expenses totaling $5,000 or more per year.
  • In Wisconsin alone 97% of all respondents reported difficulties finding direct care workers or other support staff and 98% reported difficulties finding respite.

For more information on the press conference, family caregivers and the Wisconsin Caregiver Support Alliance, please contact Lisa Pugh at

Family Caregiver Data Sheet – Wisconsin and nationwide

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.


Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.