Announcement: Electronic Visit Verification Hard Launch

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: https://forms.microsoft.com/r/Jhw6C5KmBa

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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Self-Determination Network News:

November 2022

Connect | Share |Learn | http://sdnetworkwi.org/

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:

• Ramsey Lee
• Emily Savage
• Jenny Felty
• Lisa Schneider
• Lisa Sobczyk

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?

Stacy’s Journal

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:

• 2022 Self-Determination Conference Wrap Up 
• Human Rights: #3 Have privacy
• Human Rights: #4: Get a Job
• Human Rights #5: Vote

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! 

Upcoming Events

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

• Webinar: Veterans With Disabilities: An Overview Of Veteran Affairs (VA) Resources Supporting Independence And Inclusion: November 15, 1p.m. to 2:30p.m., Online

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.

Meet 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. Volunteering is very important to her and she has rung bells for Salvation Army for over 30 years. She encourages everyone to make sure to do research on all the candidates, and be sure to vote! We are so fortunate to have her as a member of the Network.

What's your story?  Tell us a little bit about yourself.

Kate is a twenty-four-seven Green Bay Packer fan for life! She shares that in 1990, a virus caused her brain to swell, loss of memory, balance, sense of direction, etc…  “It made my so-called normal life of almost forty years a real mess,” she tells us! Though it’s been a lot of hard work, her doctor fortunately sent her to Curative Connections Brain Injury and Wellness Day Program in Green Bay, WI when she was out of rehabilitation. She uses a wheelchair, so she says she rolls! She’s thankful to have a sound mind and able to make a difference. She lives outside of Denmark, which is about only fifteen minutes east side of Green Bay. She’s very fortunate to be able to live at home with one of her sisters and they help each other! 

What does Self-Determination mean to you? Why is it important?

To Kate, self-determination means using information and friends to allow one to become more independent. She explains that online and on Facebook you can meet many individuals and hear their stories. It’s important to have a good support system. A few years ago, she was invited to join Partners in Policy Making! Transportation is an issue for many, but with covid it was online, so she didn’t need to travel. It was an awesome learning experience for her! She was interested in what was going on with politics and politicians that affect people with disabilities, but had no clue she could make a difference! 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Kate shares that attending the Self-Determination Conferences in WI Dells has also opened her ability to meet more people and have awesome adventures! Her very favorite is finding out about My Team Triumph! “Before covid hit, they were at the conference, and I was able to ride one of the three wheeled chairs – I was hooked immediately,” she explains! Since then, she has been the captain of several teams of angels running in the Bellin Run and Packer 5k in Green Bay, WI. “It is so amazing being right next to the runners who are trying to improve their personal times, being high-fived and encouraged to continue! When you depend on a wheelchair and mostly feel short, these runners make you feel your full height,” she says.  

 What tip or resource would you like to share with people who want to be more self-determined?

Kate explains that it’s easy to think “someone else will take care of everything.” She’s so happy she became involved in caring about what is going on in Wisconsin politics. It has really changed her life! Voting has always been important to her, but now she understands how important it is to do your research on the candidates and if they are aware of people with disabilities. https://www.VOTE411.org, gives you the information to make wise choices, and compare candidates that are going to make a difference or not make a difference in your district. She says, “there are other sources as well, get involved, you don’t have run for office, but you will find whatever interests you and want to make a difference – you can…”    

What are some of your hobbies?

Kate explains that she that found after she was less able to do physical things all the time, she had an amazing gift for writing rhyming poetry! She continues to bring a great deal of happiness to many. She also enjoys making greeting cards on her computer. She likes going on Facebook to keep up with some of my nieces and nephews who live in different states. “I have only a hundred friends and these people all are important to me, I don’t just friend anyone,” she tells us.

She also enjoys going outside with her power wheelchair, planting flowers, and feeding the cats that live in our machine shed! Volunteering is near and dear to her heart! She volunteers at Curative Connections and, for about thirty years with friends and family members, she has enjoyed ringing Bells for the Salvation Army. “I enjoy every day and love to have fun 😉 I feel it is very important to give back and be thankful… Live well,” she exclaims!  

 ***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.