During the COVID-19 pandemic, nearly all projects funded by the Administration for Community Living’s National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) experienced substantial delays and required pivoting in some way during the pandemic. Grantees used this opportunity to collect data on the experiences of people with disabilities. This document summarizes some of their findings.

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The electronic visit verification process is using intense reconsideration. If a congressional bill passes, GPS would be eliminated. Some people worry this would put millions of dollars already in by home health providers and government agencies at risk of being wasted. On the other hand, people with disabilities argue that having GPS linked to EVV is an invasion of privacy. 

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Recently,  the U.S. Department of Justice (DOJ) and the U.S. Equal Employment Opportunity Commission (EEOC) each released a technical assistance document on artificial intelligence (AI) and the Americans with Disabilities Act (ADA). The DOJ’s guidance document, Algorithms, Artificial Intelligence, and Disability Discrimination in Hiring, provides a broad overview of how employers’ use of AI and other technologies in hiring and employment may result in unlawful discrimination against people with disabilities under Title I of the ADA. The press release is available here. To find out more about the guidance or the ADA, visit ada.gov or call the Justice Department's toll-free ADA information line at 1-800-514-0301 or 1-800-514-0383 (TDD). To find out more about the EEOC’s technical assistance document, visit The Americans with Disabilities Act and the Use of Software, Algorithms, and Artificial Intelligence to Assess Job Applicants and Employees or eeoc.gov.

Self-Determination Network News:
May 2022

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

Make your Voting Plan 

It's an important election year! Wisconsin will hold two statewide elections. The Partisan Primary is August 8th and the General Election is November 9th. The Wisconsin Disability Vote Coalition has put together several different resources to help people make a plan for voting. You can also check out their website for even more resources. Start planning now, so you can make sure your vote counts! 

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 Martha. This incredible mom is an advocate for all families in her school district. In addition, she's a para-athlete who loves to do ballroom dancing! Check out this month's Member Spotlight to get to know Martha.   

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:

• In the Spotlight: Moving Out on My Own
• Stewing with Stacy: Why I Share my Story
• In the Spotlight: Shining a Light on Youth Voice, Youth Choice: Making Your Own Choices and Decisions

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:

• Fact Sheet: Government agencies have begun reviewing policies that were put in place during the pandemic. Many flexibilities will need to be rolled back. Check out this fact sheet from the Administration for Community Living has put together to address some common questions. 
• Recreation Technology Grant Opportunity: The RERC program is offering a grant opportunity to conduct research and development activities toward technologies that promote exercise and health for people with disabilities. Applications due June 13.
• Stagnate Wages for Home Care Workers Continue to Cause Issues: With jobs readily available in today's economy, people can pick and choose. Unfortunately, this doesn't help the direct care workforce where wages aren't keeping up. Find out how this is affecting people with disabilities. 
• Vetoed Bills: Governor Evers vetoed several bills that many feared would have a negative impact on people with disabilities. Learn about what the bills would have done. 
• Economic Crisis Facing the Disability Community: This report has a snapshot of the economic crisis people with disabilities are facing and highlights some of the barriers and failed policies that stand in the way of economic justice. 
• Community Conversations: The Wisconsin Statutory Council on Blindness wants to hear from you! They're holding community conversations to get input on what the important issues are that communities are facing right now. 
• Legendary Senator Passes Away: Senator Orin Hatch of Utah recently passed away. Find out why people with disabilities are indebted to him.
• Job Opportunity: Are you passionate about voting rights? Disability Rights Wisconsin is now hiring a Voting Outreach Advocacy Specialist. Learn more today. 
• Issues with Parcel Deliveries: Many people think that people with disabilities use the parcel services more than most. Unfortunately, this isn't the case. Read about the barriers to deliveries. 
• Funding Opportunity to Strengthen Workforce: The Administration for Community Living announced a funding opportunity to strengthen the workforce. It's a technical assistance and capacity building initiative. Applications due June 28.
• Caregiver Growth Rate Drop Despite Increasing Client Need: Here's another article about the workforce shortage. There aren't enough home care providers to keep up with the system. Learn about about what studies found. 
• Voters Continue to Worry about Restrictions: Many Wisconsin voters with disabilities continue to wonder if new restrictions will inhabit their ability to vote in the primary election. Read about what they are anxiously waiting for. 

Upcoming Events

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

• Roundtable Discussion: Lessons Learned On Partnerships For Inclusive Transit Planning: May 16, 1p.m. to 2p.m., Online
• Webinar: The ADA In Small Cities And Towns: May 17, 1p.m. to 2:30p.m., Online
• The Wisconsin Statutory Council On Blindness Listening Session: May 17, 6:30p.m. to 8p.m., Online
• The Wisconsin Statutory Council On Blindness Listening Session: May 18, 2p.m. to 3:30p.m., Online
• The Wisconsin Statutory Council On Blindness Listening Session: May 19, 10a.m. to 11:30a.m., Online
• Virtual Town Hall For Family Caregivers: May 21, 9a.m. to 10a.m., Online
• Employment First Conference: May 24, Kalahari Resort, Wisconsin Dells Wisconsin
• The Wisconsin Statutory Council On Blindness Listening Session: May 24, 10a.m. to 11:30a.m., Online
• Webinar: Accessible Data Visualization: Addressing Barriers And Implementing Section 508 Solutions: May 24, 12p.m. to 1:30p.m., Online
• Webinar: Wisconsin’s Dementia Care Specialist Program: May 25, 12p.m. to 1p.m., Online
• The Wisconsin Statutory Council On Blindness Listening Session: May 25, 2p.m. to 3:30p.m., Online
• The Wisconsin Statutory Council On Blindness Listening Session: May 26, 6:30p.m. to 8p.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 Martha. This incredible Mom doesn’t let anything stop her. Not only does she advocate for her daughter, she advocates for all families in her district. In addition to being a parent advocate, she also is a ballroom dancer para-athlete. She recently started a non-profit organization to support other para-athlete dancers. She believes self-determination is something we all can appreciate in some way. We’re so fortune to have her as a member of the Network! 

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

Martha grew up in Watertown, WI and has five younger brothers and an older sister. She was always active in sports like track, basketball, gymnastics and softball during grade school.  During high school, she was in cheerleading and softball. She worked in the cafeteria at Luther Preparatory School, later switched to a stocker/Asst Manager at Pick n Save, and also held a server job a Perkins for a short time. She shares with us that she sustained a C6/C7 spinal cord injury (SCI) the year after graduating high school from a car accident in snowy conditions.  

“Having a positive attitude amidst a traumatic injury certainly helped, and I certainly had some down days, but all the shining stars at Froedtert got me through it all,” she says.

 After all the therapy and finding a new normal, she played wheelchair rugby, went to college, and worked at Walmart in Electronics. She’s twice divorced and has a nine-year-old amazing daughter who energizes the both of us every day.  She shares that her daughter has Cerebral Palsy and epilepsy, but even with all their supports, they team up and don't let things get them down.  Her daughter has special education programming to support her academic career, and Martha educated herself on the Spec Ed system to support her and other families.  

Currently, Martha is a parent peer advocate with Madtown Mommas & Disability Advocates, a Ms. Wheelchair WI Coordinator, and she also am a ballroom dancing para-athlete. She just started a non-profit, Wheels & Heels Inc., to open ballroom dancing up to more participants since cost is definitely a barrier for this particular sport. She performed a showcase this year and will be in competitions in May and July.  

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

Martha believes self-determination is something that we all can either appreciate individually, or collectively. “It's all about setting appropriate goals and taking advantage of unique opportunities, she says.

She enjoys and believes networking amongst others is not only essential for my own perspective and experience, but it's equally important to share ourselves with those around us. “Disability in community is what inclusion is all about,” she says.  

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

Martha has two things to share. First, she’s excited to be able to work directly with the Madison School District Special Ed Department—it is empowering and impactful.  “As much as I advocate for my daughter, I'll go to bat for any family who needs with- with Madtown Mommas right aside me,” she says. 

The second that she is wheelchair ballroom dancing. “It's a sport that I can enjoy with my own time commitment for lessons, and draws out creativity.  Having been introduced to adaptive dance in a group setting back in 2019, I've been dedicated to learning technique and different styles,” she explains.  She'll be in my first competition this year on May 19th for the Milwaukee Classic, where she’ll be judged for Cha-Cha (she'll be the first wheelchair dance competitor in Wi fur cha-cha) and the routine she performed for Dance Fantasy. She loves how her instructors believe in her and continue to challenge her in a variety of ways. Her daughter enjoys being her personal cheerleader whenever she comes along, and she’s incredibly blessed to have a friend who comes along with them to watch her so she can focus on whatever dance activity they are doing.  “Life is more fun with friends,” she exclaims! 

She shares that since encircling herself in the world of dance, she has created a non-profit called, Wheels & Heels Inc., to help financially support other para-athlete dancers for personal instruction, public showcase or competition opportunities and group lessons. It is still being set up, but will have the capacity to grow and really make dancing in WI more inclusive than its ever been before.  

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

To be more self-determined, Martha suggests people make sure your goals are personalized to your individual needs, and try to make them realistic. “In other words, don't make goals upon other people's expectations unless you feel that the goal truly accommodates your individuality.  Being realistic is being honest with yourself.  Some things are just facts, others are aspiring challenges- having a lens to perceive the difference can come with trying and time, but never forget that accommodations are always an option.  

Martha tells us that resources are found everywhere. “Personally, I've learned a lot from BPDD, WPEN, UCP, DPI, FACETS, and many more.  When I had questions, I dove online and made a ton of phone calls, then put in a lot of time to educate myself with the experiences I was navigating and sharing/ listening to those around me,” she says. She stresses that communication is key and you never know where you might find a new connection. 

What are some of your hobbies?

Martha’s new hobby has become Wheelchair Ballroom Dancing. She explains that the interpretation and experience an audience member goes through while watching a performance is intriguing.  Dancing incorporates musicality, physical movement, and emotion. She never had expected that, but as a lover of the Arts, it's a vulnerable art form that reminds us of the beauty around us. 

She also enjoys any adventure she and her embark on, baking, and enjoying the summer months in Wisconsin.   

***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.

Wisconsin voters with disabilities continue to to wonder if new restrictions will inhabit their ability to vote in the primary election coming up in August. In January, a judge sided with a conservative group in a lawsuit that drop boxes aren't permitted under state law, and voters must return their own ballot. The appeals court temporarily blocked the order for the primaries in February, but the ban was in effect for the local elections in April. The Supreme Court heard oral arguments last month, and a final decision is expected in June or July. 

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Home Care is changing. Its role in the health care system is growing, but, yet, there are not enough home care providers to keep up. 80% of agencies report that the caregiver shortage is the No. 1 threat with turnover being No. 2. Agencies are taking care of more clients with less help. 

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Ever have that feeling where you feel so selfish for feeling bad for yourself, but, yet, you also are so grateful for what you have? Those thoughts of what should/could/would have been; yet, you know you’re incredibly blessed despite the circumstances you have been given. At the beginning of each May, I have this inner conflict. No, not about whether to cheer for the Cubs or the Brewers, not about whether or not I should go for a stroll because it’s finally nice outside, or not about deciding on summer plans… I have a struggle within myself about Mother’s Day. I can’t say for sure, but I have an inkling I’m not the only woman who may struggle with this. On one hand, I know that I’m incredibly fortunate to have the amazing mom I do, but, yet, on the other hand, that selfish feeling of yearning to be a mother myself often creeps into my head.

In a previous entry I wrote a few years ago, I wrote about how I have the absolute best parents. Both my mom and dad are awesome and basically have dedicated their lives to make my life the best it possibly can be. My dad has modified countless things for me and does whatever he can to make my life better. He’s truly incredible. This is an article about Mother’s Day, but I couldn’t continue without mentioning him. He’s just incredible!

My mom and I have a very special relationship. Hands down, I’m honored to say she’s my best friend. As I’ve mentioned before, very ironically, she was in the special education field before I was even born. I don’t believe it was a coincidence. This has been such a blessing because she already knew about the laws and services available. She also had connections to various resources and people, and, even though she has been retired for a couple years now, she continues to. She knew the potential of what could become, and continues to push me and encourage me to be the best I can possibly be.

Unlike most daughters my age, I still rely on my mom for countless things. Everything from interviewing aides, to staying in the hospital with me, to bringing me to and being my assistant at various events… the list is truly endless. One thing sticks out to me, though. As I age, it’s no secret that I’ve struggled more with my mental and emotional health. My mom is my sounding board. I can’t even begin to count how many times I’ve broke down to her crying or texted her venting about one thing or another. My mom gets the brunt of it. Mom always listens and tries to calm me down. She always reminds me of all that I’ve done and tells me she understands (I believe she’s one of the few people who does truly understand). She’s my rock!

Mother’s Day is a day to thank and celebrate moms. I certainly celebrate and thank my incredible mom, but it’s a day that has become harder and harder for me over the years. Selfishly, in my heart, it’s a day that emphasizes what I want most in life, but will likely never happen. In a past entries, I’ve explained that some people who have disabilities are fully capable and do have children. Due to the severeness of my physical limitations, realistically, it’d be nearly impossible to care for a child. Yes, I could have assistance, but it wouldn’t be fair to the child. In my brain, I’ve come terms with the fact that I’ll likely never become a mother, but, in my heart, it’ll always hurt.

Now that my sister has become a mother and my mom has become a grandmother, it adds another layer to it. I do my best to be happy for them, but, the “what if” thoughts sometimes take over my brain. What if those complications during birth didn’t happen? Would I be a mother? Would I have made my mom a grandma first? What kind of a mom would I be? What would have my kids been like? Thoughts such as those do no good, but I believe they are unavoidable. Sharing that I have those thoughts shows how “normal” I am.  Social media also adds another layer. Years ago, I used to write a long post about my mom on Mother’s Day. She loved it as did friends and family. However, a few years ago, I realized that staying off social media during Mother’s Day weekend was better for my mental health. Seeing friends who are mothers post about how lucky they are to be moms to their kids selfishly triggered my emotions. As happy as I am for them, it was just too hard seeing that. I then explained that I wasn’t going to do a long post anymore to my mom and, of course, she said she understood. Is it selfish? Absolutely. Do I feel bad about it? Absolutely. However, it’s one less thing that reminds me of my situation. Again, thankfully, my mom “gets it.”

Women with disabilities aren’t the only ones that might have conflicting feelings about Mother’s Day. Women who struggle with infertility, people who lost their mothers, mothers who lost their child… There are many different scenarios. It’s a day of mixed emotions for many. I’m sure the same can be said about Father’s Day for men yearning to be fathers. While it may be a day of mixed feelings, it’s a time to recognize the mother figures in our life.

Happy Mother’s Day to all of the amazing moms out there—especially mine!

***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.

Many would think that people with disabilities use the parcel services more than most. Having various things delivered to your home eliminates the need for transportation and other barriers. However, this is not the case. Whether it's trying to get down stairs to answer the door, taking too long to get to the door and missing the delivery, or another barrier, surveys show that consumers with disabilities are having issues receiving deliveries. 

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