Survival Coalition Wisconsin

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.

Updates

“Next of Kin” legislation allows hospitals to choose a decision maker to move patients from hospitals to nursing homes

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.

FoodShare Action Alert

Talking Points and Action

  • 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.

Survival Coalition develops Candidate Questions

QUESTIONS FOR CANDIDATES

Many positions in Wisconsin will be up for election in November 2026, including offices for Governor, all 8 members of Congress, all members of The Wisconsin Assembly and a third of State Senate seats.

Now is a great time for you and members of your community to come together and invite candidates to discuss the issues most pressing to you and other members of the disability community. Your questions are a great way to educate both the candidates and your communities about how policies make real impacts on you and your loved ones’ lives.

Below are a series of questions to get you started, but feel free to ask your own. Consider talking by phone or asking to meet with candidates who have announced or are considering running for an elected seat in Wisconsin. Now is a great time, when candidates are trying to gather input on what is most important to potential constituents and before their calendars fill up.

QUESTIONS

  • Medicaid, the Affordable Care Act, and SNAP have all come under fire in past years, weakening the safety net for seniors, people with disabilities and low-income Wisconsinites. What will you do to guarantee people can get the help they need to remain in their homes instead of being forced into expensive Medicaid-funded institutions? Will you put these ideas on your campaign website?
  • What are your ideas to ensure people with disabilities in Wisconsin will not be forced back into institutions, What will you do to community based services  will continue to have access to Medicaid programs with optional community based waiver services at current levels? Will you put your ideas on your campaign website?
  • What steps will you take to reduce barriers to public programs and make sure people with disabilities have access to community-based services and other supports they are entitled to? Will you put those ideas on your campaign website?
  • n  What are your ideas to address the ongoing community based direct care professional workforce shortage?   Will you put those ideas on your campaign website?
  • What steps will you take to ensure equal education for disabled children in light of eliminated federal education programs and the dismantling of the Department of Education? Will you put position statements on education on your website?
  • What are your ideas to improve public education in Wisconsin? Will you put your ideas on your campaign website?
  • What steps will you take to increase safe, affordable, accessible housing for people with disabilities? Will you put those ideas on your campaign website?
  • What are your ideas to improve transportation for people with disabilities and other non-drivers in Wisconsin (more than 1 in 4 Wisconsinites are non-drivers)?  Will you put those ideas on your campaign website?
  • What is your position on mail-in voting and use of accessible machines in Wisconsin? Will you put those positions on your campaign website?

 FEDERAL CANDIDATES ONLY

  • What are you going to do if elected to address my concerns and the real problems that are going to impact myself and my family.

CURRENT FEDERAL LAWMAKERS

  • What steps will you take to undo cuts to critical programs for people with disabilities and  make a better, easier system for the people who use it.

CURRENT OR POTENTIAL STATE LAWMAKERS

  • How are you planning to address the state budget shortfalls that are coming?
  • How will you advocate with federal lawmakers to change federal law so states aren’t hurt?
  • How are you willing to use your bully pulpit to explain how people and communities are being harmed by these changes.

PDF here.

Survival Coalition Response to Passage of Federal Budget Bill

July 3, 2025

Contact: Survival Coalition of Wisconsin Disability Organizations, Co-Chairs

Beth Swedeen, beth.swedeen@wisconsin.gov; (608) 220-2924

Patti Becker, beckerp@clanet.org; (608) 240-8503

Jason Glozier, jglozier@wcilc.org (608) 422-0525

Survival Coalition Response to Passage of Federal Budget Bill

Today, the U.S. House approved the Senate’s deeper cuts to Medicaid and SNAP by a vote of 218 to 214.

The bill rushed through the U.S. Senate without any public hearings in less than three days with parts being written and rewritten until the final hour before the floor vote. The impact of many added or changed provisions had no formal analysis before the U.S. House passed the bill less than 48 hours after receiving it from the Senate.

According to an initial estimate from the Congressional Budget Office last Saturday—which does not reflect the final language of the bill—the bill would cut Federal spending on Medicaid, Medicare, and ACA Marketplace by more than $1.1 Trillion.  More than $1 Trillion of those cuts come from Medicaid alone. At least 11.8 M people would lose health care. These numbers will increase when more detailed analysis of the final bill is done.

The bill also cuts $ 300 Billion in food assistance, taking away food from an estimated 5 Million people. 45% of Wisconsin SNAP participants are people with disabilities. Two-thirds of the people who use SNAP/Foodshare in Wisconsin are also Medicaid participants.

“These cuts will be detrimental to the ability of states to meet their obligations under the Olmstead Act, and will cause an increase in unnecessary and costly institutionalizations.” Says Jason Glozier. 

 States are unlikely to be able to pay a lot more to keep their Medicaid programs the same. States can change who can or can’t get into Medicaid (and also make eligible people wait to get in), choose to pay small businesses who provide health or long term care less, or reduce their spending on optional services.

Home and Community Based Services (HCBS)–Family Care, IRIS, CLTS–are optional services states do not have to do and they represent 50% of the optional Medicaid service spending. 86% of Medicaid optional service spending is for people with disabilities and older adults. Cuts that impact optional services will impact people with disabilities.

States are unlikely to be able to pay a lot more to keep their Medicaid programs the same. States can change who can or can’t get into Medicaid (and also make eligible people wait to get in), choose to pay small businesses who provide health or long term care less, or reduce their spending on optional services.

Home and Community Based Services (HCBS)–Family Care, IRIS, CLTS–are optional services states do not have to do and they represent 50% of the optional Medicaid service spending. 86% of Medicaid optional service spending is for people with disabilities and older adults. Cuts that impact optional services will impact people with disabilities. (PDF)

Survival Coalition of Statewide Disability Groups Statement on State Budget

July 3, 2025

Contact: Survival Coalition of Wisconsin Disability Organizations, Co-Chairs

Beth Swedeen, beth.swedeen@wisconsin.gov; (608) 220-2924

Patti Becker, beckerp@clanet.org; (608) 240-8503

Jason Glozier, jglozier@wcilc.org (608) 422-0525

The Survival Coalition of more than 20 statewide disability organizations supports the state budget passed by the Legislature and signed into law by Governor Evers overnight that continues to invest in the current levels of Medicaid supports and significantly increases special education funding. Survival also strongly supports the Medicaid rate increases for personal care, home health care, and private duty nursing: three critical supports that allow people with disabilities and older adults to remain in their homes and communities and out of institutional care.

The budget includes added Medicaid funding that allows the program “cost to continue” in spite of increases in the number of people projected to be in Medicaid, as well as increasing costs for Medicaid-covered health care, including rising prescription drug costs.

Survival Coalition also supports the budget’s continued funding for a Family Care minimum fee schedule. This ensures all residential providers will receive at least a base rate. Wisconsin’s Medicaid provider network is fragile, and many providers have of home and community-based services have struggled to stay in business

Survival Coalition has long been concerned about the inadequate reimbursement rate for special education. The state currently reimburses local public school districts at just 32.1% of their costs. This budget makes progress in getting to the 90% state reimbursement that Survival Coalition supports. The Governor’s budget would have reimbursed at 60%. This budget increases reimbursement to 42% the first year, and 45% the second year of the budget.

Survival Coalition continues to be concerned about potential devastating cuts to Medicaid and other public programs at the federal level that would impact Wisconsin’s disability community. This state budget shows the state’s commitment to investments that allow people with disabilities to be safe, healthy, and contributing members of their communities. Press release doc

Survival Coalition Statement on Senate Passage of Reconciliation Bill

July 1, 2025 
Contacts:  Beth Swedeen, beth.swedeen@wisconsin.gov; (608) 220-2924;  Patti Becker, beckerp@clanet.org (608) 240-8503 
Jason Glozier, jglozier@wcilc.org; (608) 422-0525 

Survival Coalition Statement on Senate Passage of Reconciliation Bill Survival Coalition of more than 20 statewide disability organizations issued this statement today in response to the Senate’s passage of a budget reconciliation bill that cuts over $1 trillion in Medicaid and $300 billion in SNAP food assistance in the next decade.  “People with disabilities, their families who provide care, and countless locall businesses that support people with disabilities in their homes and communities have been clear for months that the proposed budget bill will create direct harm. They have been tireless in efforts to educate policymakers on the value and benefit of Medicaid as a cost effective, efficient way to keep people healthy, safe, and connected to their communities and out of costly hospitals and institutions.  Today’s passage of a Senate bill that includes even deeper cuts than the House version feels like an attack on the lives and well-being of Wisconsin’s disability and aging communities. Survival Coalition continues to welcome opportunities to sit down with policymakers on ideas to improve public programs to ensure both quality and cost effectiveness. Today’s vote for steep cuts was not the way. People with disabilities, older adults, their caregivers, families and communities will pay the price.”  


To recap the Senate bill, it would cut more than $1.1 trillion from Medicaid, Medicare and the ACA: all programs that people with disabilities and who are aging need each day.  The bill also cuts 30% or $300 billion from food assistance. More than 45% of Wisconsin’s SNAP participants are people with disabilities.  PDF document