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Wisconsin Familes Forward Family Care Survey Results

Wisconsin Families Forward

Statewide Survey of Families with Children with Significant Disabilities

Impacts of the Legislature’s Proposed Freeze on Community Long Term Care Supports


Wisconsin Families Forward promoted an informal statewide survey to networks of families raising children and young adults with disabilities from May 31 through June 6, 2011. Although the Department of Health Services has projected that families will be able to care for loved ones with disabilities despite the proposed freeze on long-term care which goes into effect June 30, families predict in significant numbers that their life

circumstances will change dramatically for the worse. The survey solicited more than 700 responses from throughout Wisconsin in under 10 days.


Families were asked about both economic impacts and the health and emotional impacts related to the long-term care of their loved one with a disability.


The stark results show the following economic impacts:

  • More than 85% of respondents say that a lack of supports as their sons and daughters leave high school and enter the adult system will create economic hardship for their families.

  • Six in ten say their family will experience job loss (in order to provide care).

  • 60% said they would have difficulty paying for basic monthly needs (e.g. food, shelter, utilities).

  • Nearly three in 10 would lose health care coverage due to being forced to reduce employment.

  • Two-thirds say their son or daughter would lose important work- and independent-living skills they learned in school and more than six in 10 say their son or daughter would now be unable to work.


When asked about the potential health and emotional impacts on their family due to a proposed freeze on long-term care:

  • Nearly all (92%) say their family would experience significantly increased stress.

  • 62% say they or another family caregiver would experience significant deterioration in mental or physical health.

  • Nearly half say their son or daughter with a disability’s health would deteriorate.

  • 65% say their son or daughter with a disability would be unable to access the community (e.g. friends and activities).

  • Nearly 80 percent say their son or daughter would experience challenging behaviors or depression with no meaningful activity during the day.

  • 82% say concern about caring for their son or daughter would keep them up at night.


Nearly 4 in 10 say they would no longer be able to care for their son or daughter at home.


Although older adults with disabilities and seniors will also be impacted by a freeze on long-term care, families of youth leaving high school will have to make considerable life changes when these young adults are no longer occupied with meaningful activities during school hours. These young adults will receive no long-term supports that would make it possible for them to live and work in the community.

The survey solicited responses from all regions in Wisconsin and was distributed through a variety of statewide and local disability organizations.

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