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What is normal?  That’s a loaded question with no right or wrong answer. When people ask it, it’s often meant to be rhetorical leaving people to ponder. A common response to that question is, “there’s no such thing as normal.” That’s so true!  Regardless of the circumstances, normal is usually what everyone strives to be. In the disability community, the word “normal” is something we many times laugh at because it truly doesn’t exist in our world.  

Sometimes, people ask me if I could have one day- 24 hours- without CP, what would I do?  In other words, what would I do if I could be “normal” for a day? I honestly don’t even know.  I can’t even imagine.  First, I have to be realistic and say I understand that if there was a way I could be without CP for a day, I’d probably have to be a psych ward because it’d be such a shock to my entire body at first, I probably couldn’t handle myself. 

With that said, what’s the first thing I’d want to do? Yes, I have thought about it. It’s fun to daydream about. First of all, I’d want to know when it was going happen so that could have my close family and friends could be there.  When the magic first happened, (again, I’m fantasizing about this--realistically, anybody in that situation would likely need psychiatric treatment after that big of a shock to the body) I’d stand up and start hugging people. I’m not sure what I’d talk about, but I wouldn’t shut up the entire day! After hugging everyone there, I’d walk around the entire house (I’m assuming that I’d be at my parents house where I grew up) and experience walking up and down the stairs. I’d carry any babies and little kids around that were with me-–something I long to do.  We’d then go somewhere where I could try playing lots of sports just so I could see what it felt like to play the sports I love to watch. Then, we’d go to every inaccessible place in the area, so I could experience it. I’d visit friends’ houses and go up the lighthouse. I’d go to small jammed restaurants and eat the messiest foods. When we got back to my parents, explore the house some more--do simple things such as run through the grass and ride a bike. I’d probably try driving a vehicle too just so I could experience it.  I would end the day by walking around the neighborhood and chatting with my friends and family until my time was up.  That’s how I’d spend my day!

Is my fantasy realistic?   Absolutely not. If given the chance, would I do it?  Probably.  I’m not sure how I’d handle going back to having cerebral palsy. On one hand, I think it’d be incredibly hard because you just experienced a lot of things you’ll likely never be able to do again; however, part of me wonders if you’d almost miss having the limitations. It’s interesting to think about, but, if given the chance, I think I would do it.

Now, I know and understand this is one of those controversial topics among people with different abilities. Many people feel their disability is a part of who they are and they wouldn’t change it. While I respect their opinion, that’s not me. Like I’ve said in past entries, yes, I accept that I have cerebral palsy and a it’s part of my life; however it doesn’t define the person I am. For that reason, if given the chance, I’d love to experience “normalcy.”  I’m not expecting it in my lifetime.  If it happens, great, but if it doesn’t, that’s okay too.

Normalcy is something we all crave and strive for.  That said, definitions of “normal” widely vary. Unless referring to something static like temperature, the word usually can be used pretty loosely. While we all have our own unique definitions, society has its own that many people continue to strive for!

***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.  

Do you know a high school student with a disability who is a leader or a budding advocate? If so, please refer them to the Wisconsin Youth Leadership Forum (YLF)!

WHO: High school students with disabilities who have an IEP (up to age 21)

WHERE: Edgewood College, Madison, WI
WHEN: July 19 – 24, 2020
COST: FREE to invited participants

In just one week, students will gain:

• Better leadership skills
• Practice getting/keeping a job
• Career exploration
• Improved self-advocacy skills
• Adult mentors to support you
• A Personal Leadership Plan to keep you focused when you go home
• Increased confidence
• Experience with independent living skills
• Connections with your state legislators & new friends
• Memories and fun!

Application is available at: https://wi-bpdd.org/index.php/wisconsin-youth-leadership-forum/
Applications are due April 1st, 2020! 

Being selected to attend the Youth Leadership Forum is a distinct honor that can go on a resume!   

Questions?  Contact, Jennifer.neugart@wisconsin.gov or call 608-266-7707.

Comcast has recently partnered with NuEyes. They are a company who set out to allow visually impaired customers access to television, through the use of virtual reality. The company created glasses and magnifying devices to do this.

The technology is lightweight and works on everyday objects, not just TV. The new partnership will now allow millions to use the technology. Comcast has also previously released other technology. These include a voice-activated remote, and a talking TV guide. The company has also sought to make their TV programs accessible. 

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The University of Texas at Houston and the City University of New York have partnered to achieve an important goal. The two schools created a device to allow seniors the ability to stand. While losing the ability of motor functions is normal among the elderly, it is a large issue. The robotic device seeks to delay the issue. The device is a wearable machine, which functions as an exoskeleton. Fortunately, the design is much lighter than those on the market. This is crucial as a heavy product restricts the user's ability. The lighter the product, the easier it is to use. The school's ultimate goal is to expand beyond seniors. Their design could certainly be utilized by many others.

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Neillville's Daina Shilts has done it again. She has won a gold medal in snowboarding at the Winter X Games. This Special Olympian is no stranger to winning medals. She has won multiple medals at events across the world. Shilts trains in her hometown at Bruce Mound or at Granite Peak in Wausau. She snowboards every chance she gets and practices with a local ski team.

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Meet Cindy. This amazing self-advocate has used self-determination to get her where she is today. She believes everyone should be able to voice their opinions and needs regardless of their abilities. She encourages everyone to exercise their right to vote. We are so fortune to have Cindy as a member of the Network.

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

Cindy is a self-advocate and the Executive Director of People First of WI. She has come a long way from her start in an institution. She explains that she had a guardian that advocated for her! The guardian helped her to get out of the institution and helped her become her own guardian. Why was this important? Because she wanted to vote!! “When we went to the courthouse to get my self-guardianship, the judge agreed and also advocated for me to become my own guardian. So, I feel the need to pay it forward with my work in People First of WI and advocate for others,” she says.

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

“I want to be able to speak up for myself, I want to do my own thinking and not have others speak for me. It’s the same reason for myself advocacy and assisting others to advocate for themselves,” Cindy says. She feels that people with disabilities should be able to voice their opinions and needs--just like everybody else. 

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

Cindy thinks people have more of a voice now. People are listening to people with cognitive disabilities more than ever before. She recently took Secretary Palm of DHS on a tour to showcase people with significant disabilities that successfully live in their community. “The Secretary came on the tour and listened to my input regarding the advantages of community living as opposed to living in an institution. She followed up with a thank you card - that’s exciting,” she exclaims!

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

Cindy encourages people to get out and exercise your right to vote!  She explains that many decisions that lawmakers need to make can affect people with disabilities. “You can’t complain if you don’t vote,” she says. She also wants to remind people that this year it is important to be counted in the 2020 Census.

What are some of your hobbies?

Cindy loves snuggling with her kittens. She’s an avid sports fan, and she loves watching and participating in all sports. She also enjoys reading magazines and watching TV.

***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.

Community Care Corps seeks proposals for innovative local models in which volunteers assist family caregivers or directly help older adults or adults with disabilities with non-medical assistance in order to maintain their independence.

Community Care Corps will award competitive grants between $30,000 and $250,000 to establish, enhance, or grow volunteer programs. A wide range of nonprofit entities, such as faith- and community-based organizations, institutions of higher education, and service organizations, as well as state, county, and local governments are encouraged to apply.

Community Care Corps seeks to fund local models that represent a diverse cross section of the nation reflective of geography, urban/rural/frontier and Tribal communities, underserved and limited English-speaking populations, communities with limited support programs, and more.

Through February 21, you may submit an optional Notice of Intent to Apply. Beginning February 10, the application portal will accept submissions at the same wepage.

Applications due April 3, 2020, 5:00 PM ET

Under a new bill introduced by a legislator who uses a wheelchair, BadgerCare would pay for standing wheelchairs.  These chairs lift people up, relieving pressure on parts of the body prone to sores and bone density issues. They are also useful for functional purposes such as reaching things.    

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 Self-Determination Network News:

January 2020

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

ACTION ALERT:  New Wisconsin ABLE Legislation Could Help More People With Disabilities Save for the Future

ABLE (Achieving a Better Life Experience) accounts are a great new way for people with disabilities (or families on their behalf) to save money without harming their eligibility for important benefits like Medicaid or Social Security. Unfortunately, many Wisconsin residents don’t even know about ABLE or how to set up an account. That’s because Wisconsin is one of just 9 states that does not to operate or market an ABLE program.

Bi-partisan legislators have just introduced an ABLE bill that would require the state Department of Financial Institutions to start an ABLE program. This will increase awareness about ABLE as a savings tool so people with disabilities and their families feel more secure about earning and saving more money in an ABLE account to put toward important extra expenses like transportation, housing or other support needs.

You can learn more about ABLE here.

If you think Wisconsin should join the other 41 states with ABLE programs and make sure state residents with disabilities and their families know about ABLE here’s what you can do:

• Contact your State Assembly Representative and State Senator TODAY and ask them to support LRB-3165 and LRB-5380 – the ABLE bill!
• Go to Who are My Legislators to find your rep’s contact information.
• Contact your representatives by January 24^TH

 You can find links to the current ABLE bill draft and legislator memo here.

2020 Disability Advocacy Day

Mark your calendars!  Make certain your voice is being heard by joining us for the 2020 Disability Advocacy Day in Madison on Tuesday March 24th! It's a day designed to connect you with your legislators so you can talk about issues that matter to you. You are the expert in sharing how legislative policies affect people with disabilities in their everyday lives.  Registration and additional information will be coming soon.

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.

The theme of the channel is: Self-Determination is Empowerment. It’s a place where self-advocates can be seen and heard, connect with others, and mentor each other. The hope is that the channel can be used as a teaching tool and show examples of what is possible.

Videos are posted weekly 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:

• Tips for a Stress Free Holiday
• New Year Resolutions for 2020
• Self-Determination Channel 2019 Top 10 Moments
• Darwin Makes Up for Lost Time

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

If you want to be notified every time we post a new video, click on the bell that is next to the subscribe button on Channel homepage.

Then, click the "All" bell.

That's all there is to it. You will now get an email notification every time a video is posted.

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 Barbra.  This worldwide traveler believes that people with disabilities should make their own choices and live their most meaningful lives--just like people without disabilities.  Stop by this month's Member Spotlight to get to know Barbra.

Who should we shine the spotlight on next?

Stacy’s Journal

"Whether it’s the waterpark, the sauna, the workout room, or a different amenity, it’s often fun to look around and see what the place has to offer. For people with physical disabilities, exploring hotels is also enjoyable experience; however, we often look at different things."  In this month's entry, Stacy talks about how accessibility widely varies. What accessibility issues at hotels have you faced?

We encourage you to share your thoughts and experiences as well.

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

• Free Resource:  Check out the ABLE Employer Toolkit recently released by the ABLE National Resource Center.
• Help Shape the Future of the ADA:  This year is the 30th anniversary of the Americans with Disabilities Act (ADA)!  Help form the future of it by taking a survey. 
• Feedback Needed:  The national Recognize, Assist, Include, Support and Engage Family Caregivers Act (the RAISE Act) became law in January 2018. It requires the Department of Health and Human Services (HHS) to develop and maintain a national strategy to recognize and support family caregivers, and to organize an Advisory Council to make recommendations.  Comments due February 7th.
• Members Needed:  The Assistive Technology Advisory Council is seeking new members to fill vacancies on their roster. Learn about the qualifications and consider applying.
• Winter Fun:  Wisconsin has a lot to offer in the winter, but not everyone can take advantage of it. Read about how three organizations want to change that. 
• Feedback Wanted on Airplane Restroom Accessibility: The U.S. Department of Transportation (DOT) seeks public comments on a new proposed rule to improve restroom access for passengers with disabilities on single-aisle aircraft with 125 or more seats. Comments due by March 2nd.
• Changes to Social Security Could Put Beneficiaries with Disabilities at Risk: A proposed change to federal disability assistance would result in millions more case reviews, likely cutting off many recipients with disabilities if the changes are made.  Read about the proposed change.
• Program Extended:  For the fourth time in a year, lawmakers voted to keep alive a program that moves people with disabilities from institutions into the community, but its long-term fate remains in jeopardy.  Find out why.     

Upcoming Events

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

• Waisman Center Day With The Experts: Autism: January 25th, 8:30a.m. to 12:15p.m., Waisman Center, Madison WI
• Ability Fest Planning:  February 6th, 9a.m. to 10a.m., Milwaukee World Festival Inc., Milwaukee WI
• Adaptive Sports Night:  February 8th, 5:30p.m. to 8:30p.m., YMCA, Kenosha WI
• SOPHIA Transportation Meeting: February 20th, 11:30a.m. to 1p.m., Unitarian Universalist Church West, Brookefield WI  
• Advocacy For Change 2020:  March 12th, 8:30a.m. to 4:30p.m., Concourse Hotel, Madison WI
• AbilityMKE NOW!: February 26th, 9p.m. to 10p.m., Online   
• Disability Advocacy Day: March 24th, 9a.m. to 4p.m., Monona Terrace and State Capitol, Madison 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.