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.


Survival’s Budget Analysis

Survival Coalition’s analysis document, compares Survival’s original asks, the governor’s budget and the Joint Finance Committee budget, signed into Law by Governor. Link to budget analysis

Ensuring Access to Medicaid Services rule public comments

The cross-disability Wisconsin Survival Coalition is comprised of more than 20 statewide disability organizations in Wisconsin with a mission of improving services and supports so people with disabilities can fully participate in their communities. We appreciate the opportunity to provide public comment on the Ensuring Access to Medicaid Services rule (file code CMS-2442-P) and the interest CMS has in ensuring state Medicaid LTSS programs are maximizing the use of home and community-based services so people with disabilities can live healthy, safe, community-connected lives. Our experience in Wisconsin demonstrates that to ensure access to appropriate home and community-based long-term care services and supports (LTSS) we need federal regulations and more federal guidance to:  

  • ensure rates reflect the actual cost of care,  
  • address the care worker shortage with multiple strategies,
  • ensure the provider network can provide the level of authorized services,
  • drive states to evolve service systems, lower cost, less staff intensive, more inclusive, and best practice approaches, including community supported living and integrated employment as the first and preferred option,
    Read complete list of comments.

Survival Coalition Disappointed in Expanded Private School Funding, Proposed Modest Investment in Public Special Education

June 20, 2023

The Survival Coalition of more than 20 statewide disability organizations is deeply disappointed with the Governor’s decision today to sign into law Senate Bill 330 increasing the amount of public funding for private schools, while the Legislature’s current state budget proposal for a modest special education increase would keep Wisconsin near the very bottom of all states in covering public school special education costs.

“Continuing to expand private schools that are allowed to selectively admit students and are not accountable for outcomes, while failing to adequately cover the costs of public schools which are required to educate all students is not the right direction for Wisconsin,” said Beth Swedeen, Survival Coalition Co-Chair.

“Wisconsin is now funding two separate and unequal education systems,” said Kit Kerschensteiner, Survival Coalition Co-Chair. “Wisconsin is choosing to increase funding for private schools that do not have to educate students with disabilities and where families have no recourse if their student is not receiving the specialized support they need.”

Survival Coalition supports increasing the state’s share of special education funding from the current 31.5% to 60% and eliminating public funding for private schools. As part of the ongoing state budget process, the Joint Finance Committee increased special education reimbursement to only 33.3%, dependent on funds being available. Read full Press Release

For Immediate Release: Survival Coalition Sees DHS State Budget as Beginning to Address Needs of Disability Community

The Legislature’s Joint Finance Committee last night voted on disability priorities in the Department of Health Services (DHS) section of the state budget that takes some first steps toward addressing the most pressing needs of the disability community: adequate supports to live in their homes and communities and freedom from abuse and neglect. Another critical issue– mental health supports–were mostly left out of the budget, and it is Survival Coalition’s hope that mental health and other important initiatives can move as stand-alone bills in the months ahead.

“The vote demonstrates recognition of concerns advocates have been expressing for decades and potentially a start to more re-investments that ensure Wisconsinites of all ages and abilities have access to the right care, at the right time and in the place, they most often prefer – in their own home,” said Patti Becker, Survival Coalition co-chair.

Among actions Joint Finance took:

  • Continued the 5% increase for Home and Community Based Services providers that were initially part of federal pandemic response legislation. These increases impact providers in Family Care, IRIS, and Children’s Long Term Support Services (CLTS) waivers.
  • Increases of 5% for  direct care workers in Family Care. However, no increases for IRIS participant-hired workers.
  • Increase of 4.3% to the Medical Assistance Personal Care Services
  • Requirements that Family Care managed care organizations report publicly amount of care needed (authorized hours) and the amount of care provided by service category and MCO, thus quantifying unmet needs.

“The Legislature’s attention to the direct care crisis through rate increases and better quantifying the state’s needs are important initial investments,” said Beth Swedeen, Survival co-chair. “With average direct care worker wages in the state of $13.53/hr. and fewer than half earning benefits, we have a long way to go in paying the true cost of care.” Read full press release here.

Media advisory: Thursday April 20th, 10 AM, Virtual Press Conference

Critical crossroad for community care: Direct care worker shortage creates dire consequences for Wisconsin residents, workforce, and economy.

What: Wisconsin families, older adults and people with disabilities don’t have the supports they need to live in Wisconsin communities.  If you need caregiving help, there is no one to hire and no place to go. A critical caregiving workforce is missing. The toll on people with disabilities, older adults, families and local businesses is relentless.Learn the latest data on Wisconsin’s care workforce shortage.
Hear from people with disabilities and older adults who can’t find care.

Hear from families who are forced to leave their jobs to avoid their family member being moved to a hospital or different community.

Hear from providers who can’t find workers and what it means for the future of their business and people forced to wait for help or who are turned away.
Hear from advocates on what Wisconsin should do to stabilize and increase a quality care workforce.
“The legislature has the power to take action and make long overdue investments in the communities they call home.” said Patti Becker, Survival Coalition Co-Chair. Wisconsin’s long term care system does not include the funds needed to attract and maintain a sustainable direct care workforce. Without these investments, people with disabilities of all ages will continue to be at risk, be forced to live in hospitals or nursing homes,  family caregivers will continue to leave other employment to provide unpaid care, community based care businesses and other small local business will continue to close.”  Read full Media Advisory.

Survival Coalition Press Release:Disability Advocacy Day, March 23,2023

More Than 300 Members of Disability Community Plan to Participate in Annual Disability Advocacy Day

Caregiver Crisis, Voting Access For All on Priority List

(MADISON) – More than 200 members of the disability community from all parts of Wisconsin plan to rally on March 23 for the Survival Coalition’s annual Disability Advocacy Day. Grassroots advocates will gather at the Monona Terrace for issue discussions and planning before making the walk to the Capitol to visit with  their state legislators and share how the issues impact their lives as Wisconsin residents
This year’s goal is to ensure legislators understand that the voices of people with disabilities and their families are facing significant challenges to their health, safety, and ability to remain in their homes because of the underfunding of Wisconsin’s long term care services for people of all ages. Advocates will also share the importance of protecting voting rights, supporting special education, mental health services and ensuring transportation is available for non-drivers.
“Every morning in Wisconsin people wake up waiting and worrying about themselves or their family members.  The low Medicaid rates don’t attract enough workers or providers to meet the needs of Wisconsin residents.  said Survival Coalition Co-Chair Patti Becker.
“Aging family members are sacrificing their jobs, their health, and their retirements to cover the gaps. We have to reinvest in our systems to pay for the actual costs of care,” said co-chair Beth Swedeen
”New restrictions on voting rights are creating added barriers for people with disabilities to exercise their right to vote.  We ask our policymakers to work with us to make our elections more accessible and inclusive – not more restrictive”, says Barbara Beckert, Milwaukee Office Director of External Advocacy, Disability Rights WI. Read full press release.