From Eau Claire to Oshkosh; Nekoosa to Watertown, people with disabilities are feeling significant impacts of  COVID-19 in their daily lives. People with disabilities are among the most vulnerable in the COVID-19 pandemic.

View the recording of an April 23 press event by the Survival Coalition of Wisconsin Disability Organizations that featured 4 people with disabilities and family members.

Read the press release.

See a summary of statewide survey results and stories.

View more stories here and here.

Kristi Scheunemann, Watertown, Wisconsin

  • Kristi uses a wheelchair and requires daily personal cares from providers who cannot access personal protective equipment even though her respiratory issues put her at high risk for COVID-19. She has been forced to move home with her family and lose her employment.

Jason Endres, Eau Claire, Wisconsin

  • Jason lives with his wife in Eau Claire and both use wheelchairs. He and his wife depend upon people coming to their home to help them with household chores and personal care. Care workers have stopped coming and now They are having difficulty even getting groceries delivered.

Stacy Ellingen, Oshkosh, Wisconsin

  • Stacy needs help with all of her basic needs such as toileting, showering, dressing, and feeding. She has lost all of her care workers during the crisis and was forced to move from her apartment. She cannot obtain Personal Protective Equipment (PPE), and worries this will prevent her from being able to find reliable workers when she returns home. 

Gladys Walker, Nekoosa, Wisconsin

  • Gladys’ 5-year-old son is non-verbal and no longer has school services or needed therapies. He recently had a 107-degree fever but neither he nor his family members were able to get a COVID-19 test.  It has been a struggle to keep her son engaged while the family is also balancing life with another young child at home.

Survey Summary:

The statewide survey includes responses from almost 500 people with disabilities and older adults. Respondents are from 78% of Wisconsin counties.

The COVID-19 pandemic has intensified the isolation and vulnerabilities people with disabilities and older adults face. COVID-19 is amplifying the existing direct care workforce crisis, causing reductions and disruptions in needed services, and straining families to the breaking point as they try to fill in caregiving gaps, often while struggling to homeschool children and work from home.

Key Survey Findings:

  • 40% worry if they get COVID-19 and are hospitalized they might not meet hospital triage criteria and may not get a ventilator because of age or disability.
  • 37% report that families are providing some or all daily personal care support instead of their normal paid staff.
  • All respondents are experiencing disruptions and reductions in the supports and services they need to stay healthy or allow family members to work; including losing personal care and home health care, transportation to  essential businesses and medical appointments, prescription drugs and durable medical supplies, therapies that are needed to stay or become more independent.
  • Thinking about the next two weeks, people are very or extremely concerned being unable to get help if there is a medical emergency, not knowing what to do if they are not getting the help they need, losing their care workers, and losing the routine care needed to maintain health.

Note on this survey

The people responding to this survey are isolated, but they are among the most connected members of the disability and older adult community who use Family Care, IRIS, and other programs.

These survey takers have internet access, e-mail addresses or social media accounts, and are more likely to have family members able to assist them. Many people across the state are alone, and do not have anyone to reach out to for help. Many have limited or no access to computers, internet access, and even phones.

In Wisconsin, 37% of people with intellectual or developmental disabilities do not have a phone or smart phone and 17% don’t have other ways to connect with people.

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Survival Coalition is comprised of more than 30 statewide disability organizations that advocate and support policies and practices that lead to the full inclusion, participation, and contribution of people living with disability.