Despite strong pushback from disability advocates, a case that could severely restrict the rights of those who rely on Medicaid and other government programs is set to go before the U.S. Supreme Court this week.'' The case hinges on whether individuals receiving services through programs like Medicaid have the right to sue state and local governments if their civil rights are violated.

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Announcement: Electronic Visit Verification Hard Launch

ForwardHealth Update 2022-48, “Personal Care Services Electronic Visit Verification Hard Launch Announcement”

The Wisconsin Department of Health Services (DHS) has released ForwardHealth Update 2022-48, “Personal Care Services Electronic Visit Verification Hard Launch Announcement.”

Hard launch of Wisconsin’s electronic visit verification (EVV) requirement for personal care services will begin on May 1, 2023.

After hard launch, DHS will impose consequences when EVV information is not captured for required personal care and supportive home care services (service codes T1019, T1020, S5125, and S5126). Consequences include claim denial, exclusion from future capitation rate setting development, and possible IRIS (Include, Respect, I Self-Direct) participant disenrollment.

Hard launch is required by the federal government for Wisconsin to continue to receive its full federal funding. 

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25% of adult Americans live with a disability and nearly 75% of those live with family members. Most don't have a plan for when family members can no longer take care of the person. This is because there is no system in place . Advocates are trying to get legislators to understand that there needs to be a better system in place. 

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Family Caregiver Involvement | Hospital Discharge Survey:

GWAAR, in partnership with our grassroots caregivers, are conducting a survey to collect Wisconsin family caregiver experiences at the time of a loved one/care recipient’s hospital discharge. The intent is to learn about caregiver involvement at the time of discharge. The survey will take less than five minutes of your time to complete. Please complete it yourself if you are a family caregiver and please promote this survey on your social media, websites, within your caregiver support groups, and in newsletters using the QR code or link to the survey below.

For this survey, a “family caregiver” is defined as any relative, partner, friend, or neighbor who has a significant personal relationship with and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. Responses to this survey will be combined with overall results to understand the hospital discharge process in urban cities, rural communities, and elsewhere throughout the state of Wisconsin. The data collected will be shared to promote advocacy efforts related to legislation, administrative rules, and healthcare systems and associations. Information collected will be kept anonymous.

Survey link:

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Millions of people living in the United States are feeling the effects of one of the worst affordable housing crises in a generation. But for the growing number of people with disabilities, finding and retaining quality housing they can afford is even more challenging. This report explains some of the barriers people with disabilities face. 

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As this year’s National Disability Employment Awareness Month ends, there is at least some rare good news. U.S. employment statistics over the last several months show an improvement in employment rates for people with disabilities. Specifically, people with disabilities seem to be entering the job market and getting jobs at a slightly higher rate than non-disabled people..

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In a series of anonymous interviews with 22 U.S. doctors, some admitted to refusing care to people with disabilities, making the excuse that they weren't taking on new patients. There was one finding that 82% of doctors think that people with disability have worse quality of life than other people.

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Short-term program to bring vital services to pre-Medicaid population

The Wisconsin Department of Health Services (DHS) is preparing to launch a pilot program in July 2023 to help Wisconsinites who are older or have a disability, and who are not eligible for Medicaid, get short-term services so they can stay independent and healthy. Selected aging and disability resource centers (ADRCs) and Tribal aging and disability resource specialists (ADRS) agencies in some areas of the state will help people enroll in the pilot program and find providers in their communities.

About the pilot

The Independent Living Support Pilot will offer short-term, flexible, limited services and supports. It is for people at risk of entering Medicaid long-term care. Eligible participants include adults who:

  • Are older or have a disability.
  • Make less than 300% of the federal poverty level.
  • Live in the area of an ADRC and Tribal ADRS agency that is participating in the pilot.

Each participant will have access to services worth up to $7,200. Services include things like ramps, in-home supportive care, rides to medical appointments, and more.

Learn more about the pilot

Request for applications announced

A request for applications is open for ADRCs and Tribal ADRS agencies to deliver these services in their areas.

Selected ADRCs and Tribal ADRS agencies will:

  • Find eligible participants.
  • Help them enroll in the pilot.
  • Coordinate one-time and ongoing services.
  • Help participants transition to other services when the pilot ends.


The Independent Living Support Pilot is possible through federal funding from the American Rescue Plan Act. Learn more, and sign up to receive updates about this funding in Wisconsin.

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Self-Determination Network News:

November 2022

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Let's Keep the Conversation Going: The 2022 Self-Determination Conference 

It was another great Self-Determination Conference this year. We enjoyed seeing many of you in-person, and we're glad that people who couldn't make it could join virtually. What was your favorite part about it?  Let's keep the conversation going! Share your comments, questions, and ideas.

Join the conversation!


Congratulations to the 2022 Diehard Award Winners! 

We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:


Let's Talk About Solutions to the Caregiver Crisis

During the 2022 Self-Determination Conference, InControl Wisconsin led a session about the Wisconsin Direct Workforce Crisis.  We talked about “what if, what then” situations we all face as caregivers and people with disabilities that are brought on by no available paid workers.  Everyone’s situation is different. Everyone’s story is important.

We want to hear from more people about their  “what if, what then” scenarios. More importantly, we want you to feel open to share your ideas with each other about how to make things better.

Join the Conversation


The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

This month, we shined the spotlight on Kate. This avid Packers fan uses self-determination to live life to the fullest. She has been involved in all sorts of advocacy activities, and she loves connecting with others and hearing their stories. Check out this month's Member Spotlight to get to know Kate.   

Who should we shine the spotlight on next?

128 Stacy’s Journal

"While I would love to be able to just wing a presentation or a meeting, I can’t. Luckily, for me, I’m an overly organized person."

In this month's entry, Stacy talks about how she has no choice but to be prepared for almost everything in life. She explains what it takes to prepare her communication device for various types of events. Do you have to prepare things ahead of time?

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Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).


Take five minutes to check out what's happening on the Self-Determination Network:

  • Input Needed on National Strategy to Support Family Caregivers: The National Strategy to Support Family Caregivers is intended to serve as a roadmap for better recognizing and supporting family and kinship caregivers, backgrounds, and caregiving situations. A public comment period is open until November 30.
  • Digital Accessibility Challenges: Despite a surge in hiring of digital accessibility specialists, as of 2022, only 3% of the Internet is fully accessible to people with disabilities. Read about some of the challenges of making the Internet accessible. 
  • Assessing Worker Needs and Shortages in Rural Areas: Increasing wages and benefits, improving training and career development options, and adding flexibility to state Medicaid waiver programs to pay family caregivers for providing personal care services are just some of the things that would help with improving the personal care aide workforce in rural areas.  Learn about more would help with the shortage. 
  • Accessibility in the Apostle Islands:  Sightseeing the Apostle Islands is often challenging for people who have mobility impairments. Find out what a nonprofit group is doing to try to make it more accessible. 
  • Caregiver Shortage Impact on the Economy: The caregiver shortage crisis impacts every field of the economy. Read about how the crisis is affecting the economy. 
  • People with Disabilities Reap Benefits of Remote Work: Adults with disabilities rarely have been employed at such a high rate as now. This is in large part thanks to the pandemic. Learn why more people are having success finding remote employment. 
  • Service Animal Survey: The Southwest ADA Center is conducting a study on the experiences of employed people with disabilities using service animals and other assistance animals at work. Take the survey. 
  •  Challenging Situation: As the direct care worker shortage continues, more and more people are being affected. Learn about one couple's struggle to get in-home caregivers. 
  • Climate Change Effects: As climate-related disasters become more common and severe, some feel that people with disabilities are being left out of the planning process. Read what a recent report found. 
  • Caregiver Report: ANCOR has measured the impact of the direct support workforce crisis on community providers and their ability to provide high-quality community-based services for people with intellectual and developmental disabilities (I/DD). Learn what the research found. 
  • The Pandemic Continues to Shape Medicaid Priorities: After substantial gains in 2020, Medicaid enrollment is expected to decline in 2020 due to the COVID public health emergency ending Take a look at the examination of the changes to Medicaid taking place across the country. 
  • Ageism and Ableism: Nine in 10 older adults experience everyday ageism, yet it is rarely talked about. Learn about how ageism is deeply embedded in the health care system. 
  • Independent Living Survey: The Independent Living Council of Wisconsin is looking for public input from consumers, stakeholders, and community partners is needed to describe the challenges and barriers persons with disabilities face. Take the survey! 

128 Upcoming Events

Here's a sample of upcoming events listed on the Self-Determination Network:

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 


The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.


The Independent Living Council of Wisconsin is looking for public input from consumers, stakeholders, and community partners is needed to describe the challenges and barriers persons with disabilities face. Please take a few minutes to complete the Statewide Plan for Independent Living (SPIL) public input survey. Your input will help develop Wisconsin’s SPIL and assist the Independent Living Network addressing the needs of persons with disabilities.



If you have any issues accessing the survey, please contact Tyler Wilcox at

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