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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Stop, drop, and roll. Go to the lowest level of a building. Avoid unsafe situations. As children, we are taught what to do in emergency situations. We know when a situation becomes dangerous, and, most of the time, adults know what to do when circumstances become dire. Whether people need to evacuate the situation immediately, call 911 to get help, take shelter in a safe location, or do something else to immediately reduce the risk of danger, generally speaking, most adults know what to do in emergency situations. Most adults also are physically able to make efforts to get out of harms way and do their best to protect themselves and others in their vicinity. Of course, no emergency situation is the same and there are thousands of factors that could play into every situation. For the most part, though, adults are able to do whatever they can to resolve the issue or at least minimize risk of danger for themselves and others. Regardless of what it is, being in an emergency situation is scary for everyone. For people with disabilities or health impairments, there is often another layer of fear is added. Many times, unforeseen physical barriers are presented in crisis situations, and people with mobility limitations are faced with additional challenges.

On a Monday night late in January, just after I had finished dinner, pounding on my front door scares my worker and I. I have a video doorbell, so it was odd that whoever it was chose not to ring that. Thinking it was weird because I wasn’t expecting anyone, I quickly open my doorbell app to see who it is. We see it’s a police officer. I follow my worker to answer the door. The officer explained that there was a domestic violence situation two doors down and we needed to evacuate. After seeing me, he quickly realized that it would be really hard for me to evacuate and he said he’d be right back. The reason it’d be nearly impossible for me to evacuate was because the sidewalk was snow covered. I live on the end of a building, and if I turned one way on the sidewalk, I would have been right in the middle of the incident; if I turned the other way, I would have gotten stuck because that part of the sidewalk wasn’t plowed. The officer left for 30 seconds; in the meantime, my worker and I frantically call my mom and tell her that we were told to evacuate. He came back while we were on the phone with her. My mom explained that they could come up with an accessible van, but they’re 45 minutes away. The officer said no they don’t want anyone to come in the area and that they just wanted us to move as far away as possible from the front door. He said he’d let us know when it was all clear. A few minutes after he left, we heard a cop with a megaphone say something like, “come out with your hands behind your head. I repeat, come out with your hands behind your head.” Admittedly, that really scared me. During this time, my mom was texting with me trying to calm me down and my worker was trying to calm me down as well. In the midst of this, I was getting texts from friends asking if I was ok because they said posts on the Oshkosh police scanner page on Facebook about an incident on my block. Until that point, we still had no idea what was going on. Multiple friends said it was a stabbing. I kept texting my mom. I didn’t respond to anyone else at that point. The officer eventually came back and let us know everything was fine. The whole ordeal lasted less than an hour. I never found out what actually happened nor did I want to, but, apparently, someone faked a stabbing. For a few weeks after that incident, I was pretty freaked out. I didn’t sleep very well and my anxiety was through the roof. I was, yet again, so glad I already had a counselor at that time. The reason that I can talk about this now is because the neighbors recently moved out which has been a huge stress relief. There were other incidents with the people, so, with them gone, I’m in a much safer place.

Looking back on that incident, I was very fortunate about a few things. The first and most important one being that it happened when I had someone with me. What would have happened if it had happened during the day when I was alone? What would the officer had done? Years ago, I thought was a list with the emergency services to make them aware of my circumstances. I’m not sure what happened to that program, but they didn’t have me listed. After the recent incident, my mom called the police department just to see if there was anything we can do to be precautionary. My address is now “flagged” in their system which means if there are ever any calls to my specific address, emergency personnel would have a heads up about my circumstances (I have cerebral palsy, I use a wheelchair, I use an app on my phone to communicate, etc…). We also found out that I can text 911 if I would ever need to. Gosh forbid, I would ever need to get emergency help, I now know that I can text 911. Second, I was really fortunate that it didn’t happen in the middle of the night. I don’t know what I would have done if an officer pounded on my door at 2a.m. Would I open the door by pressing the button on my bed table? Probably not because I’d be in bed, and the cop wouldn’t know what to do or how to communicate with me. I’d probably text and call my parents and then they’d call the police department and explain my circumstances. It’d be a mess! I now realize that the incident could have been much worse. I’m thankful that I was very fortunate with the timing and that nothing ended up happening, but, admittedly, it shook me pretty good.

I’ve only had a few encounters with paramedics in my lifetime. One was when I was just a few hours old and was transported to a different hospital. I obviously don’t remember that one. Another one about ten years ago when my parents and I were in Florida. It was the first time I had the severe stomach pains. We went to a stand-alone emergency room on the beach. I ended up needing to be admitted, so an ambulance had to take me to an actual hospital. My mom rode with me, so she communicated my needs to the paramedics. The other time I dealt with paramedics and firefighters was my second year at UW-Whitewater. I was in Economics class on the third floor of the business building when the power went out. It was quickly realized that it was campus-wide, so classes were canceled for the rest of the day. There was only one problem—the elevator obviously wasn’t going to work, so how was I going to get out of the building? All of my classmates left, but my professor stayed with me. I don’t remember exactly how it came down, but he must have contacted the Center for Students with Disabilities (CSD) to let them know we needed assistance. I don’t believe that I had a cell phone yet, but one of my good friends who worked with me knew where I was. She went to my dorm room, grabbed my manual wheelchair, and brought it to the business building. If I remember correctly, it took about two hours (because other students were stranded as well), but eventually a crew of seven or eight paramedics and firefighters showed up along with someone from CSD. They had a rescue chair to put me on to carry me down the stairs. At this point, I was laughing hysterically because it was made into such a big commotion. Everyone thought I was freaking out because I was scared, but my friend had to explain to them that I was fine; I was just laughing really hard. They carried me down and put me in my manual chair. I spent the day in my friend’s room until the power came back on. It’s one of my favorite memories from college, and I still occasionally tell it when I do presentations. I laugh every time.

Living with significant physical limitations can sometimes lead to some pretty interesting situations. While most of the time, I feel safe and confident in my surroundings, there are times when I’m scared because I don’t have the physical ability to protect myself. I admit, as I get older, I find myself becoming more of a scaredy cat in different situations. Maybe it’s age; maybe it’s anxiety. I just have to try to be as cautious as I can be and be prepared for life’s twists and turns!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

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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A new cafe in Racine gives people with disabilities a opportunity to use their skills. The cafe employees work on following multi-step directions and practicing their executive functioning skills which include: critical thinking, planning, time and resource management, and organization among others.The cafe makes people with disabilities feel valued.

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Voters with disabilities continue to advocate for better voting accessibility. Many polling places still aren't fully accessible and absentee voting has become more challenging in recent years.. The outlawing of drop boxes last year made it harder for people to return their ballot. Another issue is training poll workers on the accessible voting machine. Advocates continue to raise these issues with legislators.

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