Updated Aug. 13 at 12:22 p.m. CT
Some Wisconsin people with disabilities are raising concerns about their health during the COVID-19 pandemic. But the Trump administration says federal money coming to the state should provide some help.
One state resident speaking up is Kristi Scheunemann of Watertown. She was born with spina bifida, which affects her spinal cord. She also has breathing problems and uses a wheelchair. Scheunemann said COVID-19 has cut back the number of caregivers who come to her home, and the caregivers who do come don't have enough personal protective equipment.
"They often don't wear masks or gowns. They also go to other clients. So, I don't know what they're being exposed to, and in turn, what I'm being exposed to," Scheunemann said.
Parents of children who have special needs are also raising concerns. Gladys Walker's 5-year-old son is on the autism spectrum and hasn't been able to attend his public charter school near Nekoosa. She said when at school, her son receives occupational and behavioral therapy.
But now that he is always at home, Walker said, "We have seen an increase in behavioral problems with him. They send us packets to work with him. But, I mean, we're not occupational therapists. We don't know if we're doing it right. So, we've been just winging it."
Walker, Scheunemann and others spoke Thursday during a news briefing organized by the Survival Coalition. It is comprised of more than 30 statewide disability organizations that advocate for inclusion and participation. The coalition says in Wisconsin, more than 85,000 people rely on in-home health care and many other services in order to be able to live at home and not in more expensive Medicaid-funded institutions.
The U.S. Department of Health and Human Services recently announced that $16 million is coming to Wisconsin to fund delivered meals, other home-based care services, and more support to families and caregivers.
In a statement to WUWM, the federal agency said, "No American with a disability should ever worry about being denied routine or life-saving care."
Here is the full statement:
- On April 21, 2020, HHS announced $85 million in supplemental grants to our nation’s 354 Centers for Independent Living to meet the needs of Americans with disabilities as their communities respond to the need to mitigate and prevent the spread of COVID-19. Because of these grants, a network of 354 community-based organizations, called Centers for Independent Living (CILs), are able to increase their capacity and more quickly provide a vast array of resources and services to help people with disabilities stay healthy and living independently in their communities across the United States.
- The need for these services has increased as community measures to slow transmission of COVID-19 have closed locations where many people typically receive services and made it difficult for families to assist loved ones who live alone. In addition, the adaptations necessary to provide these services in the current environment have increased costs to Centers for Independent Living.
- CILs have a long-standing history in the United States of being the network of community-based organizations that are led by people with disabilities. They know what is needed in their communities across our nation in this unprecedented time of need. With their leadership, many individuals with disabilities will be able to remain safely and independently at home. For some, this may mean getting the support they need to return home after a hospitalization and treatment for COVID-19.
- No American with a disability should ever worry about being denied routine or life-saving care. In March, HHS issued a civil rights bulletin affirming the value of people with disabilities. We cannot accept the denial of care based on preconceptions of disability. Since the release of the bulletin, HHS has resolved issues with several states regarding their rationing of care standards.
Editor’s note: When this story was first published, it included a photo of Independence First with a caption describing the agency as “one of the eight independent living centers (ILCs) in Wisconsin helping people with disabilities.”
In August, Independence First reached out to WUWM to let us know that it did “have protective gear for all its personal care workers who would travel outside the home,” and that the agency had “nothing to do with the issues and problems” that were reported on in the story. To avoid any confusion or misinterpretation, we chose to remove the photo.
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