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Self-Determination Network News:

October 2020

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Last Chance! Register Today! 

There's still time to register for the 2020 Self-Determination Conference. Registration will stay open until October 23rd. The conference will be held virtually October 26th-28th. Learn how to live more independently, participate more in your community, and direct your public funds efficiently. Registration is free! Register now!

Direct Care Workforce Survey 

InControl Wisconsin is partnering with The Wisconsin Long Term Care Workforce Alliance, Wisconsin Personal Services Association and Survival Coalition on this Direct Care Workforce survey. This survey is to learn more about direct care worker experiences in Wisconsin. As the backbone of long term care in Wisconsin, it is important for decision makers to learn about worker experiences from workers directly. Our organizations advocate on behalf of the workforce and people with disabilities and older adults who need care. Names and responses to this survey WILL NOT be shared with employers and all answers are confidential. Survey results will be used in communications with policymakers in future advocacy activities. There's an opportunity to provide your email at the end of this survey if you would like to stay in touch about future advocacy opportunities. This survey will close October 23, 2020.

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:

• What My Day Looks Like
• Back Off

We encourage you to subscribe to the Channel (you can do by clicking the red Subscribe button on any of the video pages).

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.

In October, we're shining the spotlight on Dean. This fun-loving grandpa loves to volunteer and help people in any way he can. He’s been involved in disability advocacy for many years and doesn’t let his health conditions stop him from living life the way he wants to. Stop this month's Member Spotlight to get to know Dean.

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:

• Impact of COVID-19: The American Association on Health & Disability recently released an analysis of the impact of COVID on people with disabilities. Find out what their study revealed. 
• Adaptive Mountain Bikes: After an accident left him paralyzed, a man found he can help others when he designed adaptive mountain bike for himself. Read about how he realized that he could design bikes for other people with similar limitations. 
• Voting Information: The November Presidential election is going to be like no other. Find out what the Wisconsin Disability Vote Coalition is doing to educate people. 
• Transition Parents in Partnership: Transition Parents in Partnership (TPIP) will prepare families for the transition process for their youth with disabilities ages 14-21 in the areas of employment, education, living and health. All sessions will be virtual this year. Learn more and register today! 
• Emerging Leader Award: Through the AAPD Paul G. Hearne Emerging Leader Awards, the American Association of People with Disabilities (AAPD) recognizes outstanding emerging leaders with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. Applications due October 28th. Learn more and apply today. 
• 2021 AAPD Summer Internship Opportunities: The American Association on People with Disabilities announced they are now accepting applications for summer internships for 2021 in Washington DC for college students and recent graduates with disabilities. Applications are due October 28th. Read more and apply today! 
• Voting Resources: Check out information and resources from the Wisconsin Disability Vote Coalition. 
• Voting Challenges: With any election, people with disabilities face a variety of challenges. Add a pandemic in the mix and more problems arise. Read about the several issues issues people with disabilities face when trying to vote. 
• Disparities in Healthcare: The Americans with Disabilities Act turned 30 this summer in during the pandemic. Read about why many people think the pandemic emphasized the disparities in healthcare. 
• Voting and COVID-19 Report: The American Association of People with Disabilities (AAPD) has published a nonpartisan policy report COVID-19 and the Disability Vote, urging federal, state, and local governments to take immediate action and ensure that voters can cast a ballot safely, accessibly, and securely in the 2020 general election. Learn how the pandemic has made it more difficult for people with disabilities to vote. 
• Governor's Task Force on Caregiving Report: A report from the Governor’s Task Force on Caregiving, presenting their policy recommendations, is now available.  Find out what was recommended. 
• Best and Worst Cities: Each year, WalletHub publishes a report ranking the best and worst cities in the US for people with disabilities. Learn which Wisconsin cities made the top 100.
• Be Inspired: It's hunting season in Wisconsin. Read about a man from Prairie du Chien doesn't let his limitations stop him from doing something he loves! 
• COVID-19 Resources for Adults in Long-Term Care Programs: The Wisconsin Department of Health Services has created a plain language resource webpage for adults in the long-term care programs. Check out the information! 

Upcoming Events

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

• AbilityMKE Now! With Dave Stevens: October 15th, 6:30p.m. to 7p.m., Online
• ADA Audio Conference Session: Accommodations For Hiring And Work: October 20th, 1p.m. to 2 p.m., Online
• Did You Know? Now You Know!: October 20th, 3p.m. to 4:30p.m., Online
• NBDC’s Virtual Disability Inclusion Summit: October 21st, 10a.m. to 1p.m., Online
• What’s After High School?: October 22nd, 12:30p.m. to 2p.m., Online
• What’s After High School?: October 22nd, 6p.m. to 7:30p.m., Online
• What’s After High School?: October 28th, 5p.m. to 6:30p.m., Online
• AbilityFestUSA: October 26th to November 1st, Sheraton Hotel, Brookefield 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.

The Wisconsin Department of Health Services has created a plain language resource webpage for adults in our long-term care programs: Family Care, Family Care Partnership, IRIS (Include, Respect, I Self-Direct), and PACE (Program of All-Inclusive Care for the Elderly). This webpage provides information about how members and participants can stay healthy, safe, and connected during the COVID-19 pandemic. Individuals will find resources on accessing program services, increased contact with care teams and consultants, and helpful information to consider during the pandemic.

View webpage

It's hunting season in Wisconsin. For decades, the Wisconsin Department of Natural Resources has designed a special hunting season for people with disabilities. This year, 620 people are participating in it which is a significant increase from previous years. For Don McCarthy of Prairie du Chien, going deer hunting has a tradition that goes back many years. McCarthy, who has a visual impairment, started hurting with his dad when he was 12 years old. His inability to see doesn't phase him. Now, at 63 years old, the tradition continues. He always brings a friend along to guide him. 

Read more

Meet Dean. This fun-loving grandpa loves to volunteer and help people in any way he can. He’s been involved in disability advocacy for many years and doesn’t let his health conditions stop him from living life the way he wants to. We are so fortune to have him as part of the Network.

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

Dean has had disabilities most of his life, but he doesn’t let them stop him from living  life the way he wants to. He shares that he was diagnosed with orthopedic problems and fibromyalgia when he was young. He also has type 2 diabetes, asthma, and heart disease. He has survived three strokes, two heart attacks and several other medical problems as he got older.  He’s losing his hearing and uses a TTY phone. He explains that he is learning to read lips and is planning on learning sign language. Some of his conditions are chronic and may never get better, but he knows giving up isn’t an option. “I am very motivated to do things I’m told I can’t do or may not be able to do. I love to prove people wrong when I can,” he says.

In 1985, Dean started business college hoping to study electronics, but ended up taking a slight detour into small business management and then supervisory management. “A very good example of where my life took several detours along the way on my journey in life. I never considered the detours I have taken any type of problem, but a great opportunity to grow and learn so much more,” he says. He thinks he learns so more from living his crazy life everyday than any classroom lesson could ever teach him. He considers himself a lifelong learner.

Dean is a very creative, spontaneous and adventurous person. He has a married daughter and two wonderful grandchildren. He also has several other people’s children who call him dad and grandchildren who have adopted him as grandpa.

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

Dean has been involved in disability advocacy for many years. He got involved with the advocacy with his involvement with People First in the 80s, then with Systems Change Network in Iowa, and then with several other organizations. He’s currently a participant representative on the IRIS advisory committee for the last seven years. 

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

Dean is excited that he was recently reappointed to the IRIS Advisory Committee for another year until December 2021 by the Wisconsin Department of Health and Human Services.

What are some of your hobbies?

Dean has many hobbies that he loves to do. He believes in volunteering and giving back to my community and other organizations. Currently, he helps manage and operate a church and several non-profit organizations. He enjoys doing photography and videography which are things that he learned in high school.  He’s also an amateur radio operator for KC9TMG.

***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.

“I think he already knows I’m different,” I said to my mom as I was playing with my then almost three-month-old nephew as she was holding him in her lap. I know the statement caught her off guard because she told my sister what I said later that day. Normally, my friends and family know that if there’s a big event that happened, I’ll write about it in the next month’s journal entry. I was fully expecting to write about becoming an aunt in my July journal entry, but that didn’t happen.

It’s commonly known that little most little girls dream of becoming a mother. They play with baby dolls and pretend to be a mommy. I was no different. I had many dolls and I enjoyed pretending to be a mommy. Obviously, as I grew up, I realized that the becoming a mother wasn’t as easy as it once seemed. It wasn’t until my younger cousins and best friends started getting married and having babies that I realized becoming a mom probably isn’t in the cards for me. My love for teaching and little kids makes that reality even a harder pill to swallow.  Personally, I think it’s one of the hardest parts about having a physical disability.

When my sister got married, I knew she and her husband probably would eventually have kids. On a Saturday morning last November, she texted me, “I have an idea of what you can get me for Christmas.” Not thinking anything of it, I casually texted back, “Great. What?”  She sent me Amazon link to the book, What to Expect When You’re Expecting. Of course, I texted back congratulations right away and asked when she was due. After the news set in, I’d be lying if I said I wasn’t sad. Don’t get me wrong, I was over the moon for my sister and her husband, but selfishly, I was feeling sorry for myself.

The holidays were right around the corner, and I knew she would announce it to our extended family. They announced it to a small group of people at Thanksgiving. For a few seconds I had to compose myself. Again, very selfishly, it’s not the easiest thing to witness everyone super excited over something you desperately desire, but know will likely never happen to you. I tried to hide my tears as much as possible. Having said that, though, my sister and parents understand why things like these are emotionally challenging for me. That’s part of the reason why my sister told the other side of the family before we got together for Christmas. My sister sacrificed the excitement of being able to tell people in-person to make it easier on me. I feel awful she does that with so many things, but I truly appreciated that one.

As I have talked about in previous entries, I lived with my parents the first three months of the pandemic. Understandably, my mom was beyond excited to become a grandma. Her excitement was overwhelming at times. Sometimes, all I could do was go in another room. I couldn’t help but think that if circumstances were different, I would have had her first grandchild. That said, my mom continues to be the only person I can talk to about how I feel. It was very hard for her because she was so very excited, but, yet, she knew I was having a hard time.  I feel bad for her because she has to see so many situations from both sides.

My first nephew was born in mid-June.  My brother-in-law texted his sister and I sharing the exciting news. My mom got to finally send the text to the extended family that she had been waiting to do announcing the birth of her first grandchild. Admittedly, that text got to me. As happy and excited as I was for my sister, I couldn’t help but wonder if I’d be a mom if things were different. Due to the pandemic, nobody could visit them in the hospital. My parents went down and saw him the day after they got home, and my parents took me down to see them the next weekend. I was so happy that I was living back in my apartment by then, my parents could have that first visit alone. When I went to visit, I tried to prepare myself because I knew it’d be kind of challenging for me emotionally, but I desperately wanted to be excited for my sister.

I’ve been lucky to see my nephew four or five times since he has been born. Each time, I recline my wheelchair back and my sister sets him on my lap multiple times. In the beginning, we used a bopsee pillow to help support him, but now he’s big enough that he can lay on my arm pretty good. I know he will grow up knowing about my disability because my sister and brother-in-law will talk to him about it. Will there be a time period where he’s scared of me because I’m different? Likely. It happens with most little kids, but we’ll work through it.

There was like a 10-day time period right around the birth of my nephew that six of my friends announced their pregnancy on Facebook. It was unbelievable! With my emotions already spiked, seeing that didn’t help. Again, I’m so incredibly happy for all of them; it’s just hard knowing I’ll likely never get a chance to experience that. I admit, those were some tough weeks which is why I decided to wait to write about this topic.

The feeling of selfishness makes a person feel even worse in situations such as these. I feel bad really for feeling sad about other people’s joy. It’s an awful feeling. However, I’m slowly beginning to realize it’s an unavoidable part of life. I will always have the yearning to be a mother. That’s part of being “normal” enough to have that desire. Do I still feel sad when I see friends and family enjoying life with their children? Absolutely. I don’t think that feeling will ever go away. I’m slowly working on ways to try to deal with it.

When my sister heard what I told my mom that day, her response was, “that may be true, but you know what? He’ll grow up knowing you, so, to him, you won’t be different.” If that doesn’t sum up the meaning of family, I don’t know what does!

***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.

Each year, WalletHub publishes a report ranking the best and worst cities in the US for people with disabilities. The overall ranking is based on three categories : Economy, Quality of Life, and Health Care. Scottsdale, AZ and St. Louis,  MO ranked best. Milwaukee and Madison made the top 100.

Read the report

A report from the Governor’s Task Force on Caregiving, presenting their policy recommendations, is now available. The report details the process and recommendations developed to address the charges in Executive Order #11 and  improve conditions for family caregivers and paid direct care workers.

Read report

The American Association of People with Disabilities (AAPD) has published a nonpartisan policy report COVID-19 and the Disability Vote, urging federal, state, and local governments to take immediate action and ensure that voters can cast a ballot safely, accessibly, and securely in the 2020 general election. This report explores how COVID-19 has both created and worsened a variety of accessibility barriers that disenfranchise voters with disabilities. 

Read more

As the pandemic continued, the American with Disabilities Act turned 30.  Many people think one thing became clear - - reality falls short of the law. COVID-19 has made clear health care rights for people with disabilities are far from equal. There are several different examples of this.. This article explains some of the problems. 

Read more

As we all know, there is a presidential election coming up in November. In any election, voting often present challenges for many people with disabilities. Add a pandemic to the situation and the challenges are even more. Everything from voting place accessibility, to not getting accessible mail-in ballots, there are many issues for people with disabilities. 

Read more