The Survival Coalition of Wisconsin Disability Organizations is a cross-disability coalition of more than 20 state and local organizations and groups. For more than 20 years, Survival has been focused on changing and improving policies and practices that support people with disabilities of all ages to be full participants in community life.
Disability Advocacy Day is in-person this year! Register today! Join us in Madison on Thursday March 19th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights! Registration is free but required to attend. Register by March 2nd.
On January 16th, the Department of Workforce Development submitted a 13.10 request to Joint Finance requesting an additional $11 million in state funding for the Division of Vocational Rehabilitation (DVR) so it can provide services through June 30, 2027, and eliminate the current wait list that was re-instituted in December of 2025. Survival Coalition urges the committee to approve this request.See full letter.
Disability Day of Action is back in person! The event is focused on connecting Disability Advocates with their legislators to talk about issues that matter to them. Attendees are expected to participate in the morning briefing and visit their legislators in the afternoon. In -Person 10 A.M.– 3:00 P.M. Starting at Monona Terrace, One John Nolen Drive, Madison, WI (And at the State Capitol)Click here for the Save the Date flyer.
— A new survey by the Survival Coalition of Wisconsin highlights the immense burden carried by unpaid family caregivers across the state. More than 525 respondents shared their experiences, painting a stark picture of the challenges faced by families who provide essential care without compensation. Link to Caregiver Statistics Key Findings
Care Hours Rival Full-Time Jobs:
60% of unpaid caregivers provide care equal to or exceeding a half-time job (20+ hours per week).
10% provide care equivalent to a full-time job, and 31% deliver more than 60 hours weekly, often around the clock.
Families Fill Workforce Gaps:
When paid workers are unavailable, 63% of families step in to fill the gap.
31% report going without care entirely when shifts cannot be covered.
Impact on Employment and Finances
Caregivers report leaving or considering leaving the workforce due to caregiving demands.
One respondent shared: “I’ve already had to leave the workforce to care for my son.” Another said: “My parents will NEVER be able to retire due to expenses.”
Impact on Wisconsin Employers
Employee caregiving costs US employers $33 billion annually from lost productivity and an additional $6.6 billion to replace employees who retire early or quit,”
Wisconsin Family and Caregiver Support Alliance (WFACSA) Exemplary Employer awards recognize employers that adopted policies and practices to help unpaid caregivers keep their jobs. Award ceremony November 21, 2025. Madison, WI WFACSA at http://wisconsincaregiver.org/alliance
Complex Responsibilities Beyond Basic Care
Unpaid caregivers are performing tasks that rival professional health care roles:
86% coordinate care, including scheduling appointments and managing prescriptions.
67% complete Medicaid paperwork and verify eligibility.
67% perform nursing or medical tasks, while 60% provide personal care such as assistance with transfers, toileting, and eating.
83% attend medical appointments, and 36% correct billing and paperwork errors.
Call to Action
The Survival Coalition urges policymakers, employers, and communities to recognize that for multiple reasons unpaid caregivers are not a sustainable solution for Wisconsin’s direct care workforce crisis. Investments in the direct care workforce strengthen our economy, communities, and individual health outcomes.
On Wednesday November 5th, the Senate Health committee is having a public hearing onSB 578/AB 598, which would let hospitals pick a decision-maker (called a Patient’s Representative) if a patient becomes unable to make medical decisions so they can discharge them quickly and empty hospital beds. The “Patient’s Representative” would have the power to put patients in rehabilitation and nursing home facilities and is given the same authority over the person’s money, where they live, and their medical care as a guardian, without any court oversight. This hearing was announced 24 hours in advance of the hearing.
The Hospital would choose a Patient Representative based on a list set in statute. The Patient’s Representative gets broad authority over the person and their money. The bill does not say how, who, or when the person can be re-evaluated to get their rights to make their own medical decisions restored. The patient’s representative’s authority potentially continues indefinitely.
If this issue is important to you can contact your State Senator and State Representative (Look up your legislators) with your thoughts.
This bill is almost the same as a bill that failed last session and does not resolve any of the concerns raised by aging, disability, legal, and patient advocates last session (see Concerns about the bill below).
Hospitals say people who are medically incapacitated and who do not have a Power of Attorney for Health Care or Guardian to make medical decisions are staying in hospitals longer than necessary. However, the bill does not address other root causes of Hospital discharge delays, which result in longer hospital stays including:
Staffing shortages at rehabilitation and nursing home facilities. Facilities cannot accept patients if they do not have the staffing needed to accommodate the patient’s level of care needs.
Insufficient Community Services. Provider capacity and staffing shortages to limit access to home care services that could help families care for patients at home.
Inability to return to previous care setting (AFH, CBRF, RCAC, SNF) after hospitalization because their because their condition now requires a higher level of care. Affordability, availability, and facility acceptance all play significant roles.
Time needed for families to gather needed information, apply for Medicaid, and have workers verify income, assets, and other requirements to determine Medicaid eligibility.
Hospitals not having information about which patients are enrolled in Family Care (Family Care MCOs have a role in discharge planning for Family Care members).
Additionally, there is a growing demographic of people who do not have family or other close relationships that could be tapped to serve as a Patient’s Representative (assuming someone was willing to do so).
Concerns about the bill
Wisconsin has deliberately designed its statutes and regulations to safeguard the rights of individuals; this bill bypasses those protections.
While other states have “Next of Kin” laws, those laws are not as expansive as what is being proposing in SB 578/AB 598.
SB 578/AB 598 bill DOES NOT:
Require any screening or background checks to prevent individuals with financial motives or history of abuse from being appointed as a patient representative.
Establish a process for contesting the appointment of a patient representative whose decisions or priorities conflict with those of the individual.
Sets no limits on how long a patient representative can make decisions on behalf of the individual.
Require that the finding of incapacity – or the appointment of a patient representative – be communicated to the individual. As a result, a person may lose their right to make their own decisions without knowing who is acting for them and why.
Provide a mechanism for the individual to object to decisions made by the patient representative (other than the decision to admit)
Ensure oversight of health care decisions. Instead, the bill grants the patient representative decision-making authority that is equivalent to that of a guardian of person, but without any court oversight. That would allow patient representatives to override the individual’s wishes and authorize involuntary care (with some exceptions). Agents authorized under a Health Care Power of Attorney do not have that authority, and Guardians of the Person are subject to court oversight.
Specify when or whether an incapacitated individual must be re-evaluated for capacity, who can/must perform the evaluation, or who is responsible for ensuring it occurs.
Provide any requirements or timelines for a court to hear a petition reviewing the patient representative’s conduct.
Authorize a court to remove the patient representative.
Provide a process for patient representative to resign, and does not address what happens if the representative becomes incapacitated or dies.
Define what is included in “health care expenditures.”
Clarify whether a patient representative can liquidate assets (including real estate) on limits of the PR’s ability to liquidate assets (including real estate) to privately pay for placement and/or to spenddown to be eligible for Medicaid.
Clearly authorize a patient representative to access bank accounts, retirement accounts, life insurance policies, and other financial information used to verify Medicaid eligibility.
Speak to what happens when a patient is transferred to a different facility or between facilities.
Specify who in the hospital must notify corporation counsel or Adult Protective Services, set timelines for such notification, or outline consequences if notice is not provided.
Address what happens if the individual has no known county of legal residence or if their most recent residence was in another state.
Address decision-making for incapacitated individuals while they are in the hospital.
Distribute the action alert (below and attached) to your networks.
Ask your members, clients, and friends/families to call their state Senator and state Representative.
Ask your members, clients, and friends/families to share this alert with their networks and ask contacts to make calls.
Organization members, sign onto a letter supporting increased state funding to keep SNAP running here
If you have connections to local food pantries or other aging or disability groups, encourage them to sign onto the letter.
Immediate action is needed by the state legislature. Some new requirements went into effect Oct 1 and more impacts will be implemented Nov 1 and Jan 1st.
The federal reconciliation bill (H.R. 1) was signed into law July 4, 2025. H.R. 1 made cuts and changes to the Supplemental Nutrition Assistance Program (SNAP), known as FoodShare in Wisconsin.
These changes mean it will cost Wisconsin more to run the FoodShare program. The state must do more work to meet the new requirements, which increases the costs of running the program, while the federal funding that helps states pay for the cost of running the program is being reduced at the same time.
State budgets did not budget enough money to cover increased costs and less federal funding for SNAP. That means the state legislature must allocate more state money so Wisconsin can keep running the FoodShare program well and the way the federal government wants. See the full document here.
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