Wisconsin policymakers need to understand
disability and aging issues: People’s lives depend on it

MADISON – Half of Wisconsin residents are family caregivers, older adults, or people with disabilities, but the policy concerns they care about are largely invisible in the public conversation and debate leading up to Election Day.

Advocates, family caregivers, and service professionals who work to support older adults and people with disabilities shared firsthand experiences on Tuesday about the systemic issues families face in providing care for their loved ones and increased barriers to people getting the care and support they need to live. The conversation comes as rising threats from the federal government jeopardize the right of older adults and people with disabilities to live in their communities and get the care they need to stay there.

These issues directly affect millions in Wisconsin, where 1.4 million people are aged 60 or over, 1.1 million people are family caregivers, and 450,000 people under age 64 have disabilities.*

The real-life experiences shared during the forum co-sponsored by the Survival Coalition of Wisconsin Disability Organizations and the Wisconsin Aging Advocacy Network (WAAN) come from all over the state. Forum participants described what it’s like to rely on caregivers every day to live independently and in the community. They explained what happens when people struggle to find skilled in-home care or are forced to leave their homes because they are no longer accessible or affordable. Our panel also recounted tough economic decisions made about work and careers when there wasn’t enough home care. Parents shared their fight for their child’s education and their worries about what will happen to their child with a disability after they are gone.

We all age, and disability is a group that anyone can join at any time without warning. The systems and programs we put in place now — or dismantle — are what will be available when you or someone you love needs them. Those elected to make decisions about programs ranging from special education to home care must first understand why the right to live in the community matters, what happens when there aren’t enough workers or help for family caregivers, what it means when the housing people need isn’t there, and the importance of schools that teach everyone to support difference and put every student on a path to success.

Wisconsin is counting on them to make it a priority.

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Forum panelists:

·       Jennifer Fischer, President, Aging and Disability Professional Association of Wisconsin (ADPAW), an expert on issues seen day to day at the state’s aging and disability resource centers (ADRCs)

·       Lisa Schneider, a family caregiver to her mom and daughter and Executive Director of the Respite Care Association of Wisconsin

·       Carl Schulze, a disabled self-advocate from the Fox Valley

·       Jason Glozier, Executive Director, Wisconsin Coalition of Independent Living Centers and co-chair of Survival Coalition

·       Brian Peters, Advocacy & Accessibility Services Specialist, Independence First, Milwaukee

·       Megan Hufton, parent of two children who receive special education services and Director of Community Education and Training at the Autism Society of Wisconsin

·       Lori Karcher, parent and caregiver for her adult child with a disability

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*Sources:

https://www.dhs.wisconsin.gov/aging/demographics.htm County Population Projections Through 2050, P00138A (Excel)—Shows expected changes in the older age group from 2020 to 2050. Includes all ages, ages 55 and older, ages 60 and older, ages 65 and older, ages 75 and older, and ages 85 and older.

https://gwaar.org/api/cms/viewFile/id/2008983

https://www.disabilitystatistics.org/report/2024/WI

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Quotes from the panel

Tami Jackson: “Home care is the way that states uphold people’s rights to live in the community, to not be set aside and locked away in nursing homes or other institutions simply because they have a disability or need some extra help. Home care is also a lot less expensive than institutions. Coming cuts to Medicaid that will leave big holes in state budgets, combined with a dramatic change in civil rights enforcement by the United States Department of Justice are now threatening home care programs, and they will create dramatic consequences for caregivers and people who need care.”

Jennifer Fischer: “People are wanting to stay in their own homes, and they’re wanting to know information about the resources and programs that are out there to help them do that. How they can get to a doctor’s appointment or how they can access food or how they can handle their increased bills and looking to be able to afford things to be able to stay in their home or their. Possibly looking for help to stay in their home so they need someone to help them maybe with grocery shopping or cleaning and what to do and we also get a lot of calls from family caregivers who are looking to support a loved one.”

Lisa Schneider:  “I can’t plan for…the dealing with unstable policies, shrinking services, and a workforce that just might not be there. So my deepest fear, again, paralysis, is not whether funding and community-based care will survive but whether society will continue to honor her full rights, her dignity, and humanity. That is…A nightmare for me every day.”

Carl Schulze: “Life is tough enough already. I barely have enough aids to get by. I spend sometimes two to three days in a row in my chair each week, just based off of the level of care that I have right now. If I were to lose one, if I were to lose two caregivers right now, I would be on extreme emergency mode. And if that situation lasted for two to four weeks, I would probably end up having to go somewhere, which would mean losing my position on the county board…all of that would be taken from me. Just overnight. And…It’s really bureaucratic imprisonment.”

Brian Peters: “we receive many calls from individuals who are looking for housing for many different various reasons. People are trying to move out of their family home. They’re at risk of becoming homeless. Perhaps they’re moving for a job, whatever the case may be. But they’re looking for housing for housing that’s affordable. And accessible, as well, to meet their needs. It’s not a new problem.

We knew this would become worse and worse over time. we are in the midst of a housing crisis.”

Jason Glozier: “Oftentimes, communities plan disabilities and disability services around Medicaid and around a welfare system, as opposed to building a system that supports people’s independence…we need to plan for community services not the institutional alternative.”

Megan Hufton: “I’m trying to make transition plans, but I feel like I’m in a position where I don’t even know what questions to be asking, because I don’t even know what our options are going to be. Will there be supports so my kiddos can stay in our community where they are loved and supported and really valued? But that’s going to require a lot of help because I also have to work and I’m a single parent, so I don’t really have other options. You know, so will those, you know, home-based services be there when we need them? I don’t know. And if they can’t live at home, what are our options? That breaks my heart to think about.”

Lori Karcher: “I’m fearful for her. I know that her family will help, and there’s a lot of people out there that don’t have that, so her future doesn’t just affect her…my 19-year-old son was having conversations with his girlfriend about what is their life gonna be like…what would happen if, you know, we needed to care for your sister? We don’t want to set them up for that. We want to be able to have services available and community care available for her, because. They should be planning their future, not hers.”

Emily Petersen: “More than half of Wisconsinites are disabled, older adults, or family caregivers, or some combination of those three. It is impossible for us to be overlooked…The Survival Coalition and Wisconsin Aging Advocacy Network are the leading disability and aging advocate networks in the state. As candidates, executives, and legislators develop policy, we are the experts available to provide guidance and experience from self-advocates. We urge candidates elected to engage with disability and aging advocates and advocate groups as they make policies.”