News

American Rescue Plan Act funds to help improve services for people in Wisconsin's long-term care programs. Providers whose work supports people in Wisconsin’s HCBS programs can apply. First round of applications are due September 12th And a second round will be due in February. 

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Most people don't think twice about the ability to use a public restroom, but, for some people with different abilities, using the restroom requires accommodations that aren't readily available in most public places. Recently, a Dane County Supervisor brought a resolution to a County Board Meeting that would bring electric, height adjustable, universal changing stations to county facilities with the highest foot traffic. The resolution will head to a Committee in the next few weeks. If passed, the changing tables could be installed in the next year-and-a-half. 

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Self-Determination Network News:

August 2022

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

Have You Registered Yet? 

Have you registered for the 2022 Self-Determination Conference yet? It will be held October 17-19 at the Kalahari Resort in Wisconsin Dells. Join us for one of the largest events for people with disabilities and people who support them. There is an option to attend virtually as well. Register now!

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 Rachel. Between working for the state and being involved in different advocacy activities, this busy lady doesn’t have much free time. Check out this month's Member Spotlight to get to know Rachel.   

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:

• Youth Ambassadors Spread Word on Alternatives to Guardianship

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:

• Take the Survey: The National Survey on Health and Disability is an annual survey about health, quality of life, access to health care services, and the COVID-19 pandemic, concerning people with disabilities or health conditions. The survey closes September 2nd.
• Continued Struggles for Family Caregivers: Family caregivers continue to be forced to pick up the slack due to the workforce shortage. Read about how the pandemic only made the situation worse. 
• Lack of Hazard Pay for Caregivers: According to a recent study, more than half of US states didn't support caregivers with hazard pay or paid sick leave policies during the first 18 months of the pandemic. Learn about what else the study revealed.
• Affects of Unwinding the Public Health Emergency Policies: A report was recently released about how unwinding the public health emergency policies is affecting those who have disabilities. Find out what the main issues seems to be. 
• Vocational Rehabilitation Success: After a life-changing injury, a man in Price County was able to get back to doing what he loves thanks to help from the Department of Department of Vocational Rehabilitation. Read about what accommodations and technology he was able to get. 
• Listen Now: National Public Radio did an interview to commemorate the 32nd anniversary of the Americans with Disabilities Act. It talks about the protections people have and what more is needed. Listen to the interview. 
• Fact Sheet: To mark the 32nd anniversary of the Americans with Disabilities Act, the Biden-Harris Administration released a new fact sheet. Check it out! 
• Voting Lawsuit: Recently, four Wisconsin voters with disabilities filed a lawsuit asking the federal court to ensure that voters can get assistance returning their ballot. Read about why this is so important. 
• Employment Brief: The Administration for Community Living recently released a new brief summarizing research on Customized Integrated Employment. Find out what is being done to increase knowledge about the benefits of Customized Employment. 
• Long COVID Reports: The Department of Health and Human Services released two reports on the effects of Long COVID. Learn what the reports are about. 
• Partners in Policymaking: Applications for the next Partners in Policymaking class are now being accepted. Partners is a six weekend hybrid course that trains people how to advocate for policies and initiatives that support full participation and inclusion of people with disabilities. Applications due September 30th. 
• SPARK Grants: Applications are now available for Sparks Grants. Sparks grants are available for grassroots groups that want to be more inclusive of people with disabilities, but are not sure how to do it. Applications are due September 10th. 
• Flying Problems Continue: For travelers who wheelchairs or scooters, flying is an embarrassing and risky ordeal. Check out this article documenting a person who uses while navigating taking a flight. 
• Key Disability Questions for Candidates: Midterm elections are happening in many states. Learn about five key questions that people with disabilities may want to consider when researching candidates. 
• Input Needed on Long-Range Plan: The Administration for Community Living is seeking input from stakeholders in developing its 2024-2029 long-range plan. Participate in a listening session. 

Upcoming Events

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

• Webinar: Common Sources Of Confusion In The ADA And ABA Standard: September 1, 1:30p.m. to 3p.m. Online
• 2022 Update On Got Transition®’S Health Care Transition Resources:  September 8, 12p.m. to 1p.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.

The Administration for Community Living’s National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is hosting a series of six listening sessions to obtain input from key stakeholders, especially people with disabilities in developing its 2024-2029 Long-Range Plan. The input from these listening sessions will inform NIDILRR’s future funding priorities and strategic direction.

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Midterm elections are coming up in November for many states. For people with disabilities, there are some unique things to think about when researching candidates. This article explains five key questions that people with disabilities may want to consider. 

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For travelers who wheelchairs or scooters, flying is an embarrassing and risky ordeal. Everything from the ticket line to checking your luggage, to navigating the airport, to boarding the plane, it's often an embarrassing spectacle. The New York Times documented a person who uses a wheelchair while taking a flight. It's shocking to see what people have to go through. 

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“Don’t give up…don’t ever give up.” That was the famous quote from Jim Valvano’s famous speech at the ESPYs in March of 1993. He was a famous college basketball player and later coach who was accepting the Arthur Ashe Courage and Humanitarian Award.  Jim was courageously battling cancer. Variations of that quote have been used in many different ways in the years since his speech. It’s likely that everyone has been told “not to give up” on more than one occasion in life. Whether it’s for something as simple as a child scoring in a sports game or something as serious as a person with a terminal illness fighting to survive, hearing people say those encouraging words usually ignites a spark of encouragement in the person. The motto, “never give up,” is often heard in the disability community. For many people like myself, it’s a motto we choose to live by.

In an entry a few years ago, I wrote about how comparing our lives is human nature. It’s something we all do without even realizing it. While often comparing is a reaction to jealousy of someone’s circumstances or good fortune, it sometimes can be reflective and can make people realize how well they’re doing despite life’s obstacles. It can help people see what may be possible even when life throws you curveballs.

If you’ve been reading my entries, you probably have figured out that I’m a pretty ambitious person. Thanks to my family, growing up I was taught not to give up.  Obviously, there are some things that I want that are just not possible due to my circumstances, but, if there is a chance it could work with accommodations, I was taught to pursue it until it was accomplished. It started early on when I refused to take assignment modifications even though things took me much longer to complete than most of my classmates. It was the same with going to college, finding an apartment, and eventually finding employment. I was taught to keep fighting regardless of how many obstacles get in your way.

Over the years, I’ve witnessed many people with very similar circumstances choose to not to make use of the abilities they have. Often, these people have more physical capabilities than I do (mainly the ability to verbally speak which is huge), but don’t take advantage of them because they don’t have the ambition to jump through the so called “hoops” to get the accommodations they need. When I see this, it’s incredibly frustrating for me because I can’t help but think if I had the abilities they do where I would be. Another example is when people abuse the Social Security system. While I understand that some disabilities and health conditions are hidden, there are a lot of people who claim disability that would be fully capable of working. I can’t say much because I’m obviously on the system; however, I’m doing what I can to help provide for myself. Do I wish I was able to do more? Of course—I’d love nothing more than to be able to make enough income to be able to not be rely on the government programs, but that’s not physically possible for me.

There are many different types of “giving up.”  A few years ago, there was a big conversation among the disability community about the book entitled, “Me Before You.” It’s about a man who becomes paralyzed and he wants to commit suicide. However, because he’s physically unable to, someone else would have to assist him. There was discussion about ethics. Should someone be able to assist someone in ending his/her life if the person so desires? That’s a loaded question that has no right answer. Some people with disabilities and health conditions feel like their life isn’t worth living anymore and think it’d be better to end their life. Another example of “giving up” is when, sometimes, older people decide they have lived the life they desire and are ready to move on to the next endeavor. They Intentionally do things not to prolong their lives.

“Never give up” has been my motto for years. I used to close with it when I presented to high school students. It’s extremely hard for me to watch others not take advantage of the abilities they do have. I’m sure some people feel that I don’t take full advantage of my capabilities either; and, I respect and accept that opinion. Knowing that just pushes me to try and accomplish new things. For me, giving up will never be an option. My family and friends have worked too hard to support me in all my endeavors for me to give up on them. Sure, I have days where everything is going wrong and I feel like giving up on everything—I think everyone does, but it’s in those trying times where Jimmy V.’s words really come to fruition. “Don’t give up…don’t ever give up.”

***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.