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Mom and smilinWisconsin families with a loved one with intellectual or developmental disabilities (I/DD) are feeling the pressures of caregiving now more than ever according to a new national survey released this week by The Arc. Nearly 100 Wisconsin families responded to the national Family & Individual Needs for Disability Supports or FINDS survey that gathered responses from 3,398 unpaid caregivers in 2017.

Ninety-five percent of all caregivers who responded said they were stressed out with nearly half describing themselves as very or extremely stressed. An estimated 7.3 million people with I/DD live in the United States, with the majority living in their family home and receiving support from a family member. In Wisconsin 60% of people with intellectual and developmental disabilities (of a total of 54,202) live with their family. In 2015 – 25% of these family caregivers were over 60 years old; another 35% of caregivers are between ages 41-59.[1]

Family members and friends reported spending an average of 57 hours each week in a support role for those with disabilities assisting with everything from feeding to dressing, providing behavior supports and managing finances.

“While there are a few bright spots in this survey such as more individuals with I/DD working in competitive employment, and fewer students in separate classrooms since the 2010 FINDS survey, caregivers are reporting greater unmet needs,” says Lisa Pugh, State Director for The Arc Wisconsin.  “The caregiver shortage is hitting these families hard. They simply cannot find help.”

Wisconsin’s Survival Coalition of Disability Organizations recently reported that 85% of people responding to a state survey could not find enough direct care workers to meet their daily needs. Nearly 9 in 10 (92%) of respondents in the national survey indicated they could not find workers.

The FINDS study also revealed that:

  • Most caregivers (54%) reported that they did not have a plan for the future.  Caregivers share a long list of concerns about what will happen to their loved one with disabilities when they are no longer able to support them.
  • Family members and friends reported spending an average of 57 hours each week in a support role for those with disabilities assisting with everything from feeding to dressing, providing behavior supports and managing finances.
  • Caregivers said these obligations are affecting their abilities to address personal needs, tend to other family duties and stay afloat professionally.
  • Almost all working caregivers in the survey (95%) report that caregiving has had some impact on their employment. (91% reported going in late; 55% cut back on their hours; 33% had turned down a promotion).
  • Roughly nine of 10 FINDS caregivers reported some out-of-pocket expenses related to their family member’s disability (92%). Two-thirds (67%) reported expenses of $1,000 or more per year. One-third (36%) reported expenses totaling $5,000 or more per year.

The Arc Wisconsin is part of the statewide Wisconsin Family and Caregiver Support Alliance that is working to address the needs of families providing care to people with disabilities and older adults. Learn more here: http://wisconsincaregiver.org/alliance

[1] Source: Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2017. http://stateofthestates.org

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