A $258 million plan to improve the pay for thousands of home health care providers in Wisconsin was halted after lawmakers on the Legislature’s powerful budget committee blocked it. The plan that DHS sent to the Joint Finance Committee last month involves covering services for people enrolled in Medicaid home and community-based long-term care programs. Advocates for providers of long-term health-related services, as well as for the people who receive that care, say that if providers can’t cover higher wages, their workforce will shrink along with the number of agencies that provide that care.

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The Center on Knowledge Translation for Disability and Rehabilitation Research invites you to complete a research survey. We want to hear from adults with disabilities about the ways you find and use information in your daily life. Your experiences will help researchers learn to share information in more accessible and meaningful ways.

The survey takes about 20 minutes to complete and is confidential. We will not identify people by name when we write or talk about this research study. 

Click here to begin the survey in English

Click here to begin the survey in Spanish

Or copy and paste the URL below into your internet browser:

English: https://survey.alchemer.com/s3/7770841/Disability-Community-Survey-II

Spanish: https://survey.alchemer.com/s3/7701290/Encuesta-Discapacidad

Thank you for participating. Your voice matters! If you need accommodations to complete the survey, please email Jennifer Bumble at jbumble@air.org.

Dr. Jennifer Bumble

American Institutes for Research

jbumble@air.org

Note: English and Spanish flyers attached.

Self-Determination Network News:

April 2024

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

2024 Self-Determination Conference Call for Presenters

Are you interested in presenting at the 2024 Self-Determination Conference?  Session proposals for are now being accepted for Tuesday, October 22nd and Wednesday, October 23rd, 2024. This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined life. Proposals due by on May 10th. Submit an application today!

Please Help InControl Wisconsin's Caring Across Cultures Project

Are you someone who hires direct care workers?  Are you a family member of someone who receives support from a direct care worker?  Are you a direct care worker?  If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them.  We will give you questions to answer, to make it easier for you.

Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)

Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.

What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.

You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.

Here is a document to help you record your own video or audio.  This document will also tell you how to send us your finished recording: CLICK HERE

Need some help?

• You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.

• Are you coming to Circles of Life on May 16h in Stevens Point?  How about Employment First in Wisconsin Dells on May 21st? We will have recording equipment on site at both conferences.

Ready to Do This?

• Sign up here! 

• Questions for you to answer when you record yourself

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 Rosie. This Diehard Award winning very determined survivor and author travels around the world sharing her story of hope and perseverance. Her story has helped medical professionals, researchers, and advocates create needed changes to practices in medical facilities. Check out this month's Member Spotlight to get to know Rosie.   

Who should we shine the spotlight on next?

Stacy’s Journal

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

• Investment in Disability Services: President Biden is pushing to improve support for people with disabilities living in the community. Learn about what's being done to strengthen services.
• Funding Opportunity for Technology for Deaf and Hard of Hearing: The Administration of Community Living announced a new grant opportunity for research, development, and evaluation activities toward understanding and optimizing technologies and services used by people who are deaf and hard of hearing. Proposals are due May 6th.
• FOCUS Conference Call for Proposals: The Wisconsin Department of Health Services is now accepting proposals to present at the 2024 FOCUS Conference. Proposals due on May 1st.
• Flying with Dignity: The U.S. Department of Transportation is seeking public comments on a new proposed rule designed to ensure airline passengers who use wheelchairs can travel safely and with dignity.  Public comment due by May 13th.
• Disability Advocacy Day: Hundreds of disability advocates gathered in Madison for Disability Advocacy Day in mid March. Find out what advocates talked with legislators about.
• New Employment Resource: The US Department of Labor recently released a new resource in hopes of increasing integrated employment opportunities for people who have disabilities. Learn how the Competitive Integrated Employment Transformation Hub will help people with disabilities, their families, employment service providers, and state agencies.
• Advocates Continue to Push for More Accessible Voting: Voters with disabilities continue to advocate for better voting accessibility.  Read about some of the challenges voters continue to face.
• New Cafe: A new cafe in Racine is giving people with a chance to show off their skills and learn new ones. Find out more about this unique cafe.
• Disability Issues Should be a Priority: Over 38 million people with disabilities voted in the 2020 election, so many people feel that key disability issues should be a priority in the upcoming election. Learn about what issues people think should be priorities.
• Partners in Business Request for Proposals: The Wisconsin Board for People with Developmental Disabilities wants to partner with high schools to improve their employer engagement practices and employment outcomes for young adults with disabilities. Grant funds and technical assistance are available. Applications are due May 17th. They are also interested in partnering with businesses that want to hire and support individuals with intellectual disabilities. Applications for those grants are due May 31st.
• Flat Funding in Federal Budget: A $1.2 trillion deal for to fund the federal government includes more money for special education and disability employment, but doesn't include money for other disability programs.  Read about why disability advocates feel like many programs that people rely on were essentially cut from the federal budget. 

Upcoming Events 

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

• Webinar: Emergency Preparedness For Organizations Serving People With Disabilities And Older Adults: April 18th, 10a.m. to 11a.m., Virtual 
• Know Your Rights Webinar For Family Members: April 24th, 12p.m. to 1p.m., Virtual
• 7th Annual Older Adult Mental Health Awareness Day Symposium: May 2nd, 9a.m. to 4p.m., Virtual 
• Circles Of Life Conference 2024: May 16th-17th, Holiday Inn, Stevens Point WI
• Employment First Conference: May 21st, Kalahari Resort, Wisconsin Dells WI
• Community Conversation: May 23rd, 10a.m. to 1p.m., Independence First, Milwaukee WI

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.

A $1.2 trillion deal for to fund the federal government includes more money for special education and disability employment, but doesn't include money for other disability programs. Advocates feel that it essentially cuts things like home and community based services, state developmental disabilities councils, advocacy services, and many other programs.

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Meet Rosie. This Diehard Award winning very determined survivor and author travels around the world sharing her story of hope and perseverance. Her story has helped medical professionals, researchers, and advocates create needed changes to practices in medical facilities. She’s also a big advocate for Diversity, Equality, Inclusion, and Accessibility.  We’re so fortunate to have Rosie as a member of the Self-Determination Network!

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

This widow, mother, grandmother and educator is a fighter. In August of 2009, she underwent a total right knee replacement that developed into a MRSA staph infection. She explains that this healthcare acquired infection has led to 58 surgeries, over 200 hospitalizations more than 100 blood transfusions, more than 15 incidents of septic shock, a right leg amputation six inches above the knee, a total hip amputation, the removal of most of her pelvic bone and all the tissue to her waist on the right side. She shares that she also has suffered from C-dif. She developed it when she was in a coma because doctors had given her antibiotics to treat everything, they thought might be causing her infection and septic shock.

As she continues to battle this MRSA infection in her body, she’s driven to share her story of survival. “I believe in helping others with disabilities and other health concerns find their voices. I use my story to co-design with medical professionals, researchers and to advocate for patients and their caregivers,” she tells us. She has also written a book entitled, “Rosie’s Story, A Story of Faith, Hope, and Survival.” It isn’t found on Amazon because she signs every book. If you would like a copy, she says that people can email her.

How are you involved with self-determination? Why did you join the SD Network?

Rosie shares stories about living with a disability. She helps healthcare organizations and communities around the world understand the lived experience of individuals living with a disability. “As the world looks at Diversity, Equity and Inclusion (DEI), I encourage them to look at Accessibility or DEIA because without accessibility there won’t be any diversity, equity, or inclusion. Without the self-determination of individuals with disabilities change will not happen,” she says. She joined the SD Network because she believes the voices of many helps to create change for all individuals living with disabilities.

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

One of the most exciting and humbling experiences that happened to Rosie around self-determination was at the Wisconsin Self-Determination Conference last year when received one of the Diehard Awards. She shares that she also values being a member of the IRIS Advisory Committee because she’s able to share not only her experiences as a participant, but also the experience of other participants. “Finally, I appreciate that I was asked to share my story, my experience as a participant, and being able to present with both people from the Ombudsman and DHS at the Self-Determination Conference the last two years respectively,” she tells us.

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

Rosie’s go-to resources are the DHS website or calling DHS; she also encourages people to join the SD Network directly.

For her tip, Rosie really encourages everyone to attend the Wisconsin Self-Determination Conference. “You will meet many individuals living with disabilities that live a very self-determined life and will learn about many resources available to you,” she explains.

What are some of your hobbies?

Rosie tells us that she doesn’t have a lot of hobbies, but she loves to read James Patterson books; she has read everything he has written. She also enjoys watching television series that have a police/FBI, hospital/medical, fire department, law/order, building/renovation, baking, and every 90 Day themed programs.

***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.

Over 38.3 million people with disabilities voted in the 2020 elections, so many people think that disability issues should be a priority to any candidate who wants to win their election. The three policy issues uniquely, though not exclusively affecting people with disabilities are public health, home and community-based services, and disability benefits and work.

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