News
Self-Determination Network News:
April 2023
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Survival Coalition Survey: The Face of Caregiving
2023 Disability Advocacy Day
It was great seeing so many of you at Disability Advocacy Day a few weeks ago. If you weren’t able to attend in-person, we hope you were able to call your legislators. We want to keep the conversation going. By sharing our tips about tricks, we can help one another be stronger advocates! Join the Conversation
State Budget Advocacy
Late in February, Governor Evers released his 2023-2025 budget proposal. There is one more Joint Finance Committee listening session in Minocqua on April 26th. We strongly encourage people to attend if you're able. If you were unable to attend any of the sessions in-person, you can submit comments here. The Survival Coalition put together an analysis of the proposal from a disability perspective. The Caregiver Crisis Coalition also has created a proposal that addresses many aspects of the caregiver crisis. We encourage you to use these documents while submitting your comments and talking to your legislators about what you'd like to see in the budget.
2023 Self-Determination Conference Call for Presenters
Are you interested in presenting at the 2023 Self-Determination Conference? The Wisconsin Board for People with Developmental Disabilities is seeking session proposals for Tuesday, October 17 & Wednesday, October 18, 2023. Proposals are due by noon on May 12th. Submit a proposal today!
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 Emily. This karaoke singing young lady keeps busy by doing all sorts of fun activities. She loves to travel and play sports. She loves participating in activities with different groups and encourages people to join. Check out this month's Member Spotlight to get to know Emily.
Who should we shine the spotlight on next?
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:
- Human Rights: #17 Protection within the Law and Your Services
- Disability Advocacy Day/Rally at the State Capitol
- Sydney Unplugged/Disability Advocacy Day
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:
- Seniors Taking Care of Seniors: Older workers are helping fill a labor shortage in the home-care industry that worsened during the pandemic. Read about how more retirees are taking care of their elders.
- Home Care a Sticking Point for Medicaid Spending: President Joe Biden and his administration are using the importance of personal home care as a way to fight back against some Congress members’ desire to cut Medicaid funding. Learn how the White House is trying to keep health care off the chopping block for budget cuts.
- New Fact Sheet: The Centers for Medicare & Medicaid Services (CMS) has issued a fact sheet that addresses the following areas: COVID-19 vaccines, testing, and treatments, telehealth services, waiver flexibility, hospital-at-home care, provider scope and oversight flexibility, and Medicaid continuous enrollment. Check it out!
- Valuing Family Caregivers: Care provided by millions of unpaid family caregivers across the U.S. is valued at a staggering, estimated $600 billion annually. Learn about some of the efforts underway to strengthen support for family caregivers.
- Hiring People with Disabilities: With labor shortages across the country, overlooking those who can work but need some accommodations comes at a high cost. Find out why now more than ever it's critical to hire and retain people with disabilities.
- Accessibility Professional: The Accessibility professional is not just a change agent but in fact, part of a larger tribe that sees the world through a lens of inclusivity and espouses a new cultural norm that is essential in defining the mindset of the digital economy of the here-and-now and the future of the industry. Learn about how this profession has the responsibility of driving change in the disability economy.
- Waiting Lists a Thing of the Past: A proposal in Congress would do away with Medicaid's institutional bias and guarantee people with developmental disabilities access to services in the community. Read about how a new law would eliminate waiting lists for community-based services over time.
- Massive Confusion over Ballot Assistance: Going into the April 4th supreme court election, Wisconsin voters were still confused about ballot assistance and ballot return assistance. Find out what caused the confusion.
- The Fight Against Subminimum Wages: Advocates are highlighting a system of state tax credits across the US that allow employers to pay employees as low as $3 an hour. Read about how some states have passed laws to ban subminimum wages.
- Professionalizing Caregiving: Could professionalizing caregiving be the answer to the shortage? Learn what advocates say is needed to solve the crisis.
- Lacking Data: Thousands of people in Wisconsin lose the right to vote due to being labeled "adjudicated incompetent." Learn about the state lacks a defined system to track people who receive this label.
- Municipal Clerks Week: Municipal Clerks Week is coming up the first week of May. Do you have a great municipal clerk? Nominate them today!
- Take Survey: The League of Women Voters of Wisconsin and partners are conducting a survey to learn about voters' experience during the April 4th election. Please take the survey!
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Guardianship and Voting Rights: In Wisconsin, people under guardianship retain the right to vote unless a court specifically removes the right. Check out these resources Disability Rights developed that explains how to determine if you retain or lost the right to vote, and, if you have lost the right to vote, how to petition the court to restore it.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Overview Of Accessible Formats: April 17th, 3p.m. to 4p.m., Online
- Webinar: Accessible Exterior Routes And Surfaces: May 4th, 1:30p.m. to 3p.m., Online
- Webinar: Plain Language: May 8th, 3p.m. to 4p.m., Online
- Circles Of Life Conference: May 11th & 12th, The Wilderness Resort, Wisconsin Dells, WI
- Webinar: Easy Read Text: June 5th, 3p.m. to 4p.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.
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In Wisconsin, people under guardianship retain the right to vote unless the court expressly removes that right. |
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Disability Rights Wisconsin has developed resources that explain how to determine if you have retained or lost the right to vote, and, if you have lost the right to vote, how to petition the court to restore your right to vote. |
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Help us get the word out! We would love to share these resources with you. If you have a guardian, if you are a guardian, or if your organization supports people who have a guardian, here’s a great chance to learn more about voting rights. |
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To order copies of our resources, please email your request to info@disabilityvote.org See below for links to our website pages on Guardianship and Voting. |
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WISCONSIN DISABILITY VOTE COALITION: We Need to Hear from You: Take the Voter Experience Survey
By SD Network, 2023-04-11
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The League of Women Voters of Wisconsin and partners are conducting a survey to learn about voters' experience during the April 4th election. Please take the survey! |
| It will help the League and the Disability Vote Coalition learn about your voting experience, any challenges you had, and what worked well. Your input will help us to make Wisconsin elections accessible! |
- Link to the survey: https://my.lwv.org/wisconsin/article/april-2023-voter-experience-survey
WISCONSIN DISABILITY VOTE COALITION: Celebrate Municipal Clerks Week: Nominate a Great Clerk
By SD Network, 2023-04-11
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The 54th Annual Municipal Clerks Week is April 30th – May 6th 2023. Join the Disability Vote Coalition to recognize the important work of Wisconsin Municipal Clerks in administering our elections. |
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Municipal clerks are in charge of elections for your city, town, or village. Clerks handle voter registrations and absentee ballots. They have an important role in making voting accessible and welcoming. |
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We invite you to submit a nomination to recognize the work of your Municipal Clerk. Your nomination can highlight best practices, such as supporting the use of accessible voting machines, curbside voting, or assistance with absentee voting and early voting. You can look up your Clerk’s name and contact information here on My Vote Wisconsin: https://myvote.wi.gov/en-us/My-Municipal-Clerk |
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Nominate a clerk today! Nominations will be shared with clerks and posted on our website! Submit your nomination as soon as possible so we can recognize your clerk. |
| Complete this form to nominate your clerk: |
WISCNEWS: Why some Wisconsin residents with mental disabilities lose voting rights — and how they can restore them
By SD Network, 2023-04-11
Thousands of people in Wisconsin have been labeled " adjudicated incompetent" to vote under state laws. In Wisconsin, a court may determine someone is incompetent to vote. However, the state lacks a defined system to track people who receive this label.
U.S. ACCESS BOARD: Administration for Community Living Issues Grant Opportunity on Universal Access to Information and Communication Technology
By SD Network, 2023-04-11
Administration for Community Living (ACL) has published a grants notice to fund a Rehabilitation Engineering Research Center (RERC) that addresses the universal accessibility and usability of information and communication technology (ICT) for people with disabilities. The purpose of this RERC is to conduct research and development that ensure accessibility standards are met or exceeded for ICT, promote availability and usability of individualized ICT configurations for people with disabilities, and identify barriers to sustainable innovations that provide universal access to ICT. The grant will have a 60-month project period, requiring five 12-month budget periods.
Grant applications are due June 05, 2023 via electronic submission. Eligible applicants, details about the grant, and other information can be found on Grants.gov.
The RERC program is part of ACL's National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), the federal government’s primary disability research organization. NIDILRR’s mission is to generate new knowledge and to promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community, and to expand society’s capacity to provide full opportunities and accommodations for its citizens with disabilities.
In support of this mission, NIDILRR sponsors RERCs to address the barriers confronted by people with disabilities and improve the effectiveness of services authorized under the Rehabilitation Act. RERCs also demonstrate and evaluate technologies, facilitate service delivery system changes, stimulate the production and distribution of new technologies and equipment in the private sector, and provide training opportunities.
What's your story? Tell us a little bit about yourself.
Emily turned 30 years old on St. Patrick's Day. She has a boyfriend named Mitchell, and they have been dating for eight years. “We like to sing karaoke, go to parties and dances, and bowl together,” she says. She lives in Fond du Lac, Wisconsin now, but she’s from Illinois. She sings in a choir and also does lots of activities with Champions of Fond du Lac which is a group for people with disabilities. She enjoys taking an online cooking class every week and she also bowls.
What does Self-Determination mean to you? Why is it important?
Emily explains that she likes to make her own decisions and vote. She wants to spend time with people she likes, and she wants to work to make money. “I want to do things for myself like shopping, deciding what I want to eat and where I want to live, and planning my activities,” she says. Her iPad is important to her, so she can do online classes, Facebook, and Facetime with her friends.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Emily tells us that at a recent People First meeting they talked about voting rights. She was happy to learn that she can get help filling out her ballot.
What tip or resource would you like to share with people who want to be more self-determined?
Emily encourages people not to be afraid to say what you want and to ask for help. Try new things and be safe online. She encourages people to join People First and go to state meetings like the Self-Determination Conference.
What are some of your hobbies?
Emily is looking forward to getting outside more when the weather is nice. She loves to bowl and play bocce. She also likes to do chores around the house like laundry, take out the trash, get the mail, keep her room clean. she likes to travel. She tells us that they are going to Arizona in a few weeks, and in July, they are taking a train across the country to San Francisco.
***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.
NEXT AVENUE: Could Professionalizing the Caregiving Workforce Have Impact?
By SD Network, 2023-04-02
The caregiver shortage has only gotten worse. The problem will only worsen if the jobs don't improve, advocates say. The solution? Better pay, more training and options for career advancement. Since immigrants make up a large portion of the direct-care workforce, immigration policy also needs to be addressed, some say.
THE GUARDIAN: ‘An inherent indignity’: the fight to get workers with disability a living wage
By SD Network, 2023-04-02
Advocates are highlighting a system of state tax credits across the US that allow employers to pay employees as low as $3 an hour. Disability advocates have made progress in recent years. Thirteen states have passed laws banning the subminimum wage exemptions for people with disabilities.
Whether it’s getting your foot in the door for a company you want to work at, getting an important question answered, gathering information for a critical decision one has to make, getting in touch with the right person about something important, or getting something that you really need approved by the state, most people have benefited from having connections at some point in their lives. Connections can come from all different facets of one’s life. When people are fortunate enough to happen upon the right people in various aspects of their life, it often turns out to help them in ways they didn’t foresee. Having connections helps everyone find their way through life. People with disabilities are no different. In fact, for many different reasons such as preconceptions, isolation, and the lack of resources, we likely rely on connections more than most people. For people with disabilities, the power of networking and finding connections is crucial in our lives.
In previous entries, I’ve explained that, ironically, my mom was a special education teacher before I was even born. She was teaching for several years before I was even born. Some call it fate...I don’t think it’s coincidence that I came along and had some challenges. Obviously, I was too young to realize it for quite some time, but it was a huge blessing to our family. Not that mom had all of the answers, but she had some knowledge of disability and knew of the resources available to help us navigate through the system to get what I needed to be successful. She was aware of our rights and she knew what to advocate for. She knew the process of IEP meetings and what services I needed. Albeit, it got a little awkward when she became a Program Support Teacher (where she reviewed IEP paperwork and attended meetings for students in different programs) and then had to switch roles and be the parent during some of my meetings that got heated (I feel like every kid with significant needs has at least one or two intense meetings during their school years). The team did a good job of understanding she needed to be a parent in those situations, though.
I don’t even remember how this happened, but my sophomore year of high school, we began looking at UW-Whitewater. I believe that I got a brochure in the mail about a camp they put on for people who use augmentative alternative communication devices. For various reasons, I never ended up going to the camp, but, through one of my groups on the Internet, I connected with the organizer of the camp. He was a student at Whitewater and had very similar needs. I talked with him via email, and his hometown was only 20 minutes away from where we lived. My mom and I ended up going to his house to meet with him. I was amazed to learn that someone like me could go away to college and succeed. The summer before my junior year, my mom and I went to see the campus of UW-Whitewater. for the first time. Obviously, it was way too early to do a formal visit, but I wanted to see if it was something I’d be interested in. We met with my friend again—this time at his apartment. After that visit, I knew that was where I wanted to go. It was because of a by chance connection on the Internet that I found an amazing opportunity that ultimately shaped the rest of my life.
When I moved to Whitewater, I literally knew two people . One was the organizer of the camp and the other was a girl I met during my pre-enrollment day (Whitewater has students with disabilities come to campus a few months before to meet with people at the Center for Students with Disabilities). The girl I met also had very similar needs. She graciously gave me her contact info and we began talking. In the months prior to moving down there, I asked her all sorts of questions about college. Looking back, there’s no doubt that I bugged her with pretty silly questions, but she was good about answering them. As luck would have it, that summer we learned that we’d be neighbors in the dorm for my freshman year . She took me under her wing that year and showed me the ropes. As I met more people, I obviously made a lot more connections. Like everyone else, having connections helped me navigate college life.
About my third year of college, my mom forwarded me and email she received from her work about an online mentoring opportunity for students with disabilities. It was through Midwest Alliance which was associated with UW-Madison. I ended up mentoring high school students with disabilities for about five years, but that isn’t the point I want to make. The manager of the program really connected with me and ended up asking me to be on a panel for a session at the Transition Conference. Being able to attend that conference literally changed my life because I was introduced to the world of disability advocacy. At the conference, I was able to attend sessions about employment for people with disabilities which happened to be perfect timing because at the time I was struggling with DVR to find employment. I ended up connecting with the presenters of one of the sessions, and, although in a very roundabout way, that connection led me to becoming self-employed and working with the organizations I do. It’s really incredible to think about all of the connections it took for me to be where I am today. It’s simply amazing!
I’ve been incredibly fortunate to be able to make even more connections that have personally benefited me through the advocacy work I’m involved in. Knowing the people to contact when I have a question or need something has been so helpful. I’ll just share one recent example. Our wheelchair accessible van was totaled in mid-February. It was literally my only means of transportation. Right away, I posted on Facebook asking if anyone knew of any funding resources for van modifications. Much to my surprise, I learned that I could ask for a one-time expense through IRIS. My awesome consultant had never done one before, so she and her supervisor worked together to get the process started literally right away. They found out that I needed to have an accessibility evaluation done. They contacted my Independent Living Center to set it up. The Independent Living Center knows me as I’ve done some work with them over the years. They understood the urgency of the matter and they were able to squeeze me very quickly and do the assessment. They were amazing and we had the report early the next morning. It was submitted to the state. I waited a few days and then I reached out to someone who works in DHS and has presented many times to a state council that I’m on. He was able to connect me with the person who does one-time expenses, and later that day we received word that it was approved! The multiple connections that made it happen so quickly is remarkable.
As a person who has a significant physical disability that affects my speech, to say I’m proud of all the connections I’ve made would be a huge understatement. I realize that it takes some extra time and effort to communicate with me and get to know me. I’ve been beyond lucky to have so many incredible people who have done just that. Without all those connections, I wouldn’t be able to do anything. The connections have led to opportunities I never dreamed of. Everyone has different connections that influence their path in life. I’m incredibly fortunate to have so many connections that have led me to where I am today!
***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.