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

Action Alert: Family Caregiver’s Third job: Navigating the Maze of Systems

Today, Survival Coalition of disability organizations, Wisconsin Aging Advocacy Network, and the Wisconsin Family Caregiver Alliance are releasing the sixth short video focused on the daily challenges faced by Wisconsin’s family caregivers.

This week’s video exposes the struggle caregivers face with the systems that are supposed to help them.

Watch this four-minute video on
Caregiver’s Third Job: Navigating the Maze of Systems

In addition to the care they provide, family caregivers are constantly faced with figuring out complex administrative tasks and systems. The systems caregivers depend on often become a barrier to care when paperwork is hard, confusing, time consuming, and when many phone calls and follow up e-mails are needed.

Action steps you can take to help Wisconsin family caregivers be heard!

Suggested post language: “For many caregivers, interacting with systems is extremely time-consuming and frustrating. Too often, systems push the job of how to get the supports people need back on the caregiver. When systems aren’t oriented around addressing real caregiver problems in real time, it makes it harder on the people already working their hardest.”

  • Directly Tweet video to local reporters, , national aging and disability organizations, and influencers 

Suggested post language: “Caregiver’s Third Job: Navigating the Maze of Systems. Watch this four minute video to meet family caregivers across Wisconsin struggling with difficult, confusing, time consuming paperwork, endless phone calls and follow up e-mails, and other tasks systems push back onto caregivers in order to get the supports the people they are caring for need.
Directly Tweet and post video on your Legislator’s social media

Suggested post language: “For many caregivers, interacting with systems is extremely time-consuming and frustrating. When systems aren’t oriented around addressing real caregiver problems in real time, it makes it harder on the people already working their hardest. Three things you could do that would help people like me include 1) Broaden Family Medical Leave 2) Make sure all caregivers can get help at ADRCs 3) create a Caregiver Tax Credit. These are a few of many needed policy changes.

  • Share a message out to your grassroots or member networks with a link to the video and ask them to tell their caregiving story using this easy step by step take action link: https://p2a.co/cx0fstc

Important details legislators include where you live, your age, a little about the person(s) you care for, how many hours per day you spend caregiving, and how being a family caregiver affected your physical and mental health, and overall stress levels.

Survival Coalition Action Alert: All On Our Own: Part Time Help for Full Time Care

Today Survival Coalition of disability organizations, Wisconsin Aging Advocacy Network, and the Wisconsin Family Caregiver Alliance are releasing the fifth of six short videos focused on the daily challenges faced by Wisconsin’s family caregivers.

We need Survival Coalition members’ help to distribute this video and facts about Wisconsin family caregivers on social media, to grassroots, and to reporters.

This week’s video exposes the volume and kind of care families provide, and the lack of paid help available to hire.

Watch this four-minute video on
All On Our Own: Part Time Help for Full Time Care

The lack of quality direct care workers has increased pressure on family caregivers to an unsustainable level. Families have been forced to fill in the gaps, even though they already provide 80% of all the care needed. 85% of families do not have enough direct care workers to staff all authorized hours.

Action steps you can take to help Wisconsin family caregivers be heard!

Suggested post language: “Family caregivers spend their evenings, nights, and weekends providing care for loved ones. They pick up the pieces and provide care when direct care workers don’t show up, quit, or there’s no one to hire. The amount of care families provide is already unsustainable; the direct care workforce crisis pushes it to the breaking point. “

  • Directly Tweet video to local reporters, national aging and disability organizations, and influencers

Suggested post language: “All On Our Own: Part Time Help For Full Time Care. Watch this four minute video to meet family caregivers across Wisconsin who spend their days, nights, and weekends caregiving with no break and no help to hire.

  • Directly Tweet and post video on your Legislator’s social media

Suggested post language: “The amount of care families provide is already unsustainable; the direct care workforce crisis pushes it to the breaking point. Three things you could do that would help people like me include 1) Broaden Family Medical Leave 2) Make sure all caregivers can get help at ADRCs 3) create a Caregiver Tax Credit. These are a few of many needed policy changes.

  • Send a message out to your grassroots or member networks with a link to the video, and ask them to tell their caregiving story using this easy step by step take action link: https://p2a.co/cx0fstc

Important details legislators include where you live, your age, a little about the person(s) you care for, how many hours per day you spend caregiving, and how being a family caregiver affected your physical and mental health, and overall stress levels.

Quick facts: On Our Own, No Help to Hire

  • 85% of families do not have enough workers to staff all authorized hours.
  • Families fill in the gaps.
  • Families work long hours, every day doing complex personal and medical care.
  • 93% of personal care providers reported difficulties in filling job
  • openings.
  • The annual direct care workforce turnover rate is more than 50 percent.
  • Few direct care jobs have any benefits.
  • 50% of direct care workers rely on public assistance programs.
  • 25% live below the poverty line.
  • In 2020, the average wage for Wisconsin direct care workers is $13.22 per hour.

Update November 22: COVID Cases and Deaths Among People with Disabilities and Older Adults in Wisconsin

(Madison) – The Survival Coalition of more than 20 disability organizations supports the work of the Wisconsin Department of Health Services and the Governor Evers’ administration to share regularly updated data regarding the impacts of COVID-19 in Wisconsin’s Medicaid Adult Home and Community-Based Services system.  People with disabilities and older adults, particularly those who live in congregate or group settings are particularly vulnerable to the virus. Wisconsin’s long-term care program enrollment is 79,074 or approximately 1.3% of the WI population but accounts for more than 14% of all state COVID-19 deaths.

Survival Coalition is sharing the Department’s updated data Monthly.

The following data was published on November 22, 2021 and can be accessed in detail here: https://www.dhs.wisconsin.gov/hcbs/data.htm#cases

Read full report

Update November 1: COVID Cases and Deaths Among People with Disabilities and Older Adults in Wisconsin

(Madison) –The Survival Coalition of more than 20 disability organizations supports the work of the Wisconsin Department of Health Services and the Governor Evers’ administration to share regularly updated data regarding the impacts of COVID-19 in Wisconsin’s Medicaid Adult Home and Community-Based Services system.
People with disabilities and older adults, particularly those who live in congregate or group settings are particularly vulnerable to the virus. Wisconsin’s long-term care program enrollment is 78,972 or approximately
1.4% of the WI population but accounts for more than 1/6 of all state COVID-19 deaths.
Survival Coalition is sharing the Department’s updated data Monthly.
The following data was published on November 1, 2021 and can be accessed in detail here: https://www.dhs.wisconsin.gov/hcbs/data.htm#cases
Read More

FOR IMMEDIATE RELEASE: November 2, 2021

November is Family Caregiver Month: It’s Time to Fight the Invisible Epidemic

An invisible epidemic has been slowly raging across Wisconsin affecting approximately one in five Wisconsinites (1.18M people) who are estimated to be an unpaid caregiver. During November we recognize family caregivers who provide 80 percent of all care for people with disabilities, older adults and others throughout Wisconsin. Conservative estimates show 1 in 4 caregivers providing more than 40 hours of unpaid care a week (with many underreporting). The total value of this care is estimated at $490 million.[1]

This November the state recognizes the contributions of family caregivers while also pleading with policymakers for relief. Disability and aging advocates are unveiling a new video – Wisconsin’s Family Caregiver Crisis: The State’s Invisible Epidemic –  featuring the stories of family caregivers throughout the state. Watch the trailer here

Many caregivers want to provide this care, but it is increasingly challenging. The COVID-19 pandemic has exacerbated strain on family caregivers who have been forced to leave their jobs or put their own health at risk to continue providing care. Half of caregivers report cutting back their work or volunteer hours. If they continue to work, they often take lower-level positions to fit around their caregiving responsibilities.[2] This puts a caregiver’s financial future at risk; lost income due to family caregiving is estimated to be a staggering $522 billion each year.[3] Family caregivers spend an average of nearly $7,000 a year of their own money to support their loved one. Read Full Press Release

[1] https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf

[2] https://www.caregiver.org/resource/caregiver-statistics-work-and-caregiving/

[3] 2020 RAISE Family Caregiver report; (Chari, Engberg, Ray, & Mehrotra, 2015).

Recognizing the Need to Address the Caregiver Crisis and Supports to Families

Caregiver Survey Shows People are Going Without Needed Care, Families are Reducing Work to Provide Care. Stress is High.

Survival Coalition of Wisconsin Disability Organizations members continue to see the impacts of the pandemic on family caregivers and direct care workers who are in crisis. These survey
results from early 2021 share what is happening in Wisconsin communities and emphasize the need for the $400 billion increase proposed in the Better Care Better Jobs Act. Specifically, Survival Coalition supports increased home and community-based funding and other policy changes to increase direct care worker wages and support family caregivers who are providing a majority of care. Read full report