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96Self-Determination Network Network:

January 2021

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Happy New Year!

InControl Wisconsin would like to wish you a Happy New Year! We hope 2021 is a better year for everyone. To start off the new year, we want to encourage members of the Self-Determination Network to post news items or questions about self-determination or disability-related issues. By sharing knowledge and experiences with others, we can all learn from each other. If you have questions about how to post things, please contact Network Manager, Stacy Ellingen. Let's help one another by connecting with each other! 

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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:

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

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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're shining the spotlight on Anna. This coffee-loving author believes anything can be done by taking one step at a time. Stop by this month's Member Spotlight to get to know Anna. 

Who should we shine the spotlight on next?

128 Stacy’s Journal






"While understandably, some people are hesitant to get vaccinated, I’m more than ready. Even though we don’t know the long-term effects of it, my opinion is that we have something that will most likely keep us safe and make it so that we can gather freely again hopefully sooner than later. "


In this month's journal entry, Stacy discusses the vaccine distribution and her view on the situation. What's your opinion?






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

  • Candidates with Disabilities: Disability issues have become more prevalent in elections recently. Find out why many people feel that more people with disabilities need to run for political office.
  • Input on Autonomous Vehicles: This spring, the U.S. Access Board, in partnership with other federal agencies, will host a series of virtual meetings on making autonomous vehicle accessible to all passengers, including those with disabilities. Find out how to participate. 
  • Program Helps with Isolation:  We all have felt some degree of isolation during the pandemic. Read about a program in Marathon County that helps social isolation for seniors. 
  • Push to Make Rental Vehicles Accessible: The National Highway Traffic Safety Administration is aiming to make mobility far more accessible for people with disabilities - - especially those who use wheelchairs. Learn what is being proposed. 
  • The Remote Work is Evening the Playing Field: People with disabilities are often unemployed, even in times where a pandemic is not a factor.  Read about how the new movement to work remotely is evening the playing field for people with disabilities. 
  • New Policy for Service Animals on Airlines:  Airlines no longer have to make the same accommodations for emotional support animals as they do for service animals. Learn about why this is. 
  • Disability Employment Remains Study: According to December's disability employment report, despite a decline in the economy, people with disabilities remain active in the workforce. Find out what some people are worried about due to the pandemic surges. 

128 Upcoming Events

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

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. 

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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.


According to December's disability employment report, despite a decline in the economy, people with disabilities remain active in the workforce. Even with a increase in COVID cases, there was a slight increase in employment-to-population ratio in December. However, some believe the surges may cause a slow down in employment for people with disabilities in the months to come. 

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The U.S. Department of Transportation (DOT) has released for public comment a Request for Information (RFI) on a proposed initiative to create a library of resources on making autonomous vehicles (AVs) accessible to people with disabilities. The planned Inclusive Design Reference Hub would compile existing resources, including technical specifications, voluntary consensus standards, and best practices on providing access to AVs for persons with physical, sensory, and cognitive disabilities. 



Public comments to the RFI are due January 20, 2021. For further information, contact the DOT Contracting Officer, Robin Gates, at Robin.Gates@dot.gov or (202) 366-1408.  



The U.S. Access Board will host a four-part public forum series on AV accessibility in March and April. The sessions are free and open to the public. Attendees will be able to share comments, suggestions, and information and pose questions. For more information on the series, visit the Board’s AV webpage

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The Department of Transportation has a new policy regarding animals. Airlines no longer have to make the same accommodations for emotional support animals as they do for service animals. This means that a person may no longer be able to claim any pet as an emotional support animal, and allows airlines to decide whether they want to accommodate the animal. DOT made the policy shift to accommodate others. They stated that they received many complaints regarding emotional support animals. These included fraudulent claims and animal misbehavior. DOT also decided against allowing miniature horses and Capuchin monkeys as service animals. This change has the potential to harm many individuals with disabilities.

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People with disabilities are often unemployed, even in times where a pandemic is not a factor. Forbes reports that while an estimated 12.4 percent of persons aged 35 to 64 in the United States have a disability, only about 20 percent of individuals with a disability were working or seeking to do so. In comparison, persons without disability are employed at 69 percent. Recently, there has been some improvement as some employers have tapped into the remote work population, which often includes persons with disabilities. Remote work has allowed people with disabilities more access to employment. Many employers still insist on in-person work, despite the ADA's accommodation requirement. Since March 2020, many employers found themselves forced to allow work from home because of pandemic-related concerns. Remote work has now become an equalizer, which has opened opportunities for employers to restructure typical job requirements. This has improved employment prospects for people with disabilities. However, there is still much to be done to make employers more committed to accessibility and hiring people who have limitations.

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2021 is finally here! With vaccines beginning to be administered, hope is on the horizon. There are many different factors to consider regarding the vaccine for COVID-19. With it being so quickly developed, is it safe to get? Are there long-term side effects we don’t know about yet? Who should be priority and what is the criteria that makes them so? Should employers be able to make it mandatory for employees? How long will it take to get enough people vaccinated so the world can return to some sense of normalcy? How long will the vaccine protect people? These are all questions circulating in today’s society. Where do people with disabilities fit into this discussion? That’s a good question. Like almost every minority, at least for myself, I feel like I’m at a higher risk even though I’ve already had it once.

In previous entries, I’ve discussed how careful my immediate family and I have been from the beginning. We wear masks everywhere we go and really limit our outings and gatherings. My nephew is over six months old and we still mask up when we’re around him. My sister works in the healthcare field, so she and her husband wear masks anytime they’re around anyone else. We knew I’d be at risk of getting it simply because I have caregivers come in. Sure enough, the first week of college classes, a worker was exposed in a class, caught it, and unknowingly brought it into my house. In turn, myself and two or three workers contracted it. Fortunately, my symptoms were very mild, but I ended up having to go to my parents for over two weeks because all of my workers were quarantined. Miraculously, somehow, my mom and dad didn’t get it (that’s still something weird about this virus—how can both of test negative when I was with them 24/7 for over a week? It doesn’t make any sense), but what if they caught it, and got really sick? What would have happened? Questions like these are what keep me up at night.  We just had another scare recently where a worker’s husband tested positive and the worker exposed me without realizing it. As a precaution, I went to my parents for a few days. After talking with my doctor, we found out it’d be extremely rare for me to catch it again, and I’m probably not even a carrier anymore. Again, there is still so much unknown about this virus that it’s hard to know what to do.

How should the vaccine be prioritized? Obviously, healthcare workers and first responders should take first priority. They’re risking their lives to help and protect others who may or may not take this virus seriously. After that, I’ve heard residents in long-term care facilities will be next. While I understand they're at higher risk because they live in a congregate setting, I guess I have sort of a hard time understanding this simply because they unfortunately don’t have the opportunity to leave the facility most of the time. That said, if it means that residents can finally have visitors, I totally understand why they’d be next. I’m just not sure that’s the case as of yet. After people in community living settings, I think it’ll go by a combination of age and health risk factors. Where will people with disabilities fall in this equation? That’s the million dollar question for many of us. In my opinion, it’s going to widely vary depending on individual circumstances. I haven’t talked to my primary physician about this yet, but I’ve talked to other doctors and they feel I may be a higher priority just based on having cerebral palsy. Since I’ve already had it, though, I’m not sure how that’ll factor into it. For those of us who rely on other people to take care of us, it’s an uneasy time. We have no choice but to be physically close to people. I’m hoping in-home caregivers will have some priority just like people who work in long-term care facilities did. Time will tell.

The other question is whether the vaccine should be mandatory or not. Even though, I personally believe that everyone should get the vaccine, I understand why it can’t be mandated. Especially with this being such a new vaccine, people have reservations. People have the right to refuse medical treatments. Many people don’t believe in any vaccines which is their right; however, I don’t know where the line is drawn between personal choice and public safety. That’s a hard question that I’m not going to get into. Therefore, as an IRIS participant, I can’t force my workers to get the vaccine. This is why it’s important that people who are in situations like myself (those who need assistance from other people to complete daily living skills) get the vaccine as soon as possible.

With a vaccine beginning to be administered, I feel hopeful. While understandably, some people are hesitant to get vaccinated, I’m more than ready. Even though we don’t know the long-term effects of it, my opinion is that we have something that will most likely keep us safe and make it so that we can gather freely again hopefully sooner than later. Yes, getting the vaccine is risk, but I’d rather take the risk than continue to live in isolation forever. 

***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.

                                                                                                                               

Member Spotlight: Anna Gouker


By SD Network, 2021-01-04

Anna outdoor photo.jpgMeet Anna. This coffee-loving author believes anything can be done by taking one step at a time. She has many outstanding achievements that she’s proud of and continues to strive to do more. We’re so fortune to have Anna as a member of the Network! 

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

 Anna is originally from a small town in northern Illinois; she moved to the Madison area for grad school nearly 10 years ago. She explains that her ultimate life goal has always been a two-parter—1. to work (preferably) in a job she finds meaningful and she feels she’s uniquely gifted at and 2. to live independently in the community.

“Living in Wisconsin has been an exciting journey, one characterized by many moments of achievement as well as quite a few learning experiences (a.k.a. failures!),” Anna says. She’s proud to say she graduated with she master's degree in rehabilitation counseling and has had the privilege of working in social services. She has worked in a couple different positions over the years, but all having the common thread of assisting people with disabilities in reaching their employment goals.

Anna shares that she’s grateful to have accomplished some of her goals and she has learned a lot. While she has been able to continue living in the community, she’s not currently in a situation she would call "independent." After 10 years, she now has the benefit of a better understanding for how to make strategic progress towards the future she envisions. “It's not always possible to achieve everything all at the same time, but slow and steady wins the race. Anything can be done one step at a time,” she says. 

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

Anna was able to attend and present at the Wisconsin SD Conference for her job a couple of years ago. She’s excited to be a part of this Network to learn about all the possibilities for future growth and to assist others with their goals. 

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

Anna recently wrote a book! She explains that it's a collection of essays about her experiences, observations about the world, and the people who have influenced her the most. This is something she has been working on for a long time and she’s really excited to share it. You can learn more about it here. 

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

 YouTube and Audible are both essential resources for Anna and have really helped her get through quarantine. “There's so much information out there and cool people to learn from,” she says. She likes watching interviews of people on YouTube that she finds motivating like Oprah Winfrey and Taylor Swift. Sometimes, she will have videos of them playing in the background while she’s working on other things. Right now, on Audible, she’s starting to move through a list of books written by and about US Supreme Court Justices. 

What are some of your hobbies?

Anna enjoys drinking coffee and hanging out with her teacup chihuahua, Coco. When she’s not working, those are her two main priorities in life. She’s also hoping to downsize her belongings, so she will probably be spending much of her time cleaning in the early part of 2021. “Wish me luck,” she exclaims! 

***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.


The National Highway Traffic Safety Administration is aiming to make mobility far more accessible for people with disabilities - - especially those who use wheelchairs. The new proposed rule would allow car-rental companies to install hand controls and equip vehicles with wheelchair lifts. The rule would allow companies to bypass two safety requirements - - one of which is to allow disabling the knee-bolster airbags so temporary hand-controls could be installed. The second would allow companies to be exempt from the requirement to have back-up cameras. This is because wheelchair lifts would likely block the view. 

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Many people didn't see family over the holidays due to the pandemic. For older adults, this sometimes leads to social isolation. In Marathon County, United Way and the Aging and Disability Resource Center (ADRC)  setup a program where volunteers call seniors to check on them. Background-checked and trained volunteers make the 15 to 30-minute phone calls. Those on the line can share as much or as little as they want.

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This spring, the U.S. Access Board, in partnership with other federal agencies, will host a series of virtual meetings on making autonomous vehicles (AVs) accessible to all passengers, including those with disabilities. The four-part series will provide an open forum where members of the public and stakeholders can discuss considerations, challenges, and solutions in designing AVs that are inclusive of everyone. The sessions are free and open to the public. Attendees will be able to share comments, suggestions, and information and pose questions.

The Board is undertaking this initiative jointly with other agencies, including the Department of Labor’s Office of Disability Employment Policy and the Department of Health and Human Service’s Administration for Community Living. The sessions will be conducted through a virtual platform (Zoom) and will focus on different types of accessibility and user groups. The final session will review findings and recommendations, identify areas for further study, and recommend next steps.

The planned schedule is:

Accessibility for Passengers with Mobility Disabilities: Entering and Exiting Vehicles
March 10, 2021, 2:00 – 3:30 (ET)

Accessibility for Passengers with Mobility Disabilities: Maneuvering and Securement in Vehicles
March 24, 2021, 2:00 – 3:30 (ET)

Communication Accessibility for Passengers with Sensory or Cognitive Disabilities
April 7, 2021, 2:00 – 3:30 (ET)

Findings, Recommendations, Future Research, and Suggested Next Steps
April 21, 2021, 2:00 – 3:30 (ET)

Each session will feature presentations by agency representatives and invited speakers who will review relevant information and research and outline issues and questions for discussion. An open dialogue with attendees will follow. In addition, an online crowdsourcing platform (ePolicyWorks) will provide a forum for continued discussion after the live session. 

Further details will be posted on the Board’s AV webpage in coming weeks. Direct questions to Randall Duchesneau III at duchesneau@access-board.gov or (202) 272-0044.

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