News

The Rage Fund (https://jointherage.org/) seeks to understand the needs of those who use in-home care providers in order to develop more responsive solutions. It will only take 5 minutes to complete this survey: https://forms.gle/FLhKaCUcq48Y6Uko9  All information submitted is anonymous, and the information you share will inform services and products provided by The Rage Fund. Thank you for taking the time to share your experience with us. 

• a US map with information about alternatives to guardianship in different states;
• photos and bios of our Youth Ambassadors and a Youth Ambassador Training Curriculum;
• resources for many different audiences including ones written in plain language; 
• stories about youth; and
• information on State Teams that are part of a national Community of Practice.

• How civil rights laws prohibit discrimination against people with disabilities in accessing scarce healthcare during emergencies, including Crisis Standards of Care (CSCs).
• Our networks filed complaints with OCR about CSCs, including several that were resolved by OCR.
• Reasonable modifications to visitation policies, including in hospitals and long-term care settings.
• Our networks also filed complaints with OCR about visitation policies, including at least one that was resolved by OCR.
• Accessibility of vaccination, testing and contact-tracing programs.

Along with vaccinations and sensible individual measures such as wearing masks, maintaining physical distance, and hand-washing, at-home COVID-19 tests are an important tool for stopping the spread of the virus. There now are several no-cost ways to get tested and to obtain at-home test kits to have on hand in case they’re needed. For people who need to purchase additional tests, health insurance may cover the cost (and assistance may be available for those who do not have insurance).The Administration for Community Living  pulled together the basic details in this fact sheet.

• Implement Organizational Practices to Center and Prioritize DEIA in the Workforce
• Grow and Sustain DEIA through Structural and Cultural Change
• Advance DEIA Through Research

Self-Determination Network
February 2022

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

Register Now for Disability Advocacy Day of Change 

Registration is now open for Disability Advocacy Day of Change which will be held virtually on March 16, 2022. It's a event focused on connecting Disability Advocates with their legislators to talk about issues important to them. Attendees are expected to participate in the morning briefing and call their legislators in the afternoon. Registration deadline is March 8. Register today! 

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 Krystal. This writer has overcome a challenging childhood and has learned writing helps her express her feelings. Check out this month's Member Spotlight to get to know Krystal.   

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:

• Voting in Local Elections

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:

• Vaccine Mandates: Despite the Supreme Court blocking wider mandates, some support workers working with people with disabilities will still be required to be vaccinated. Read about what the Court decided. 
• High Hopes for Legislation: Disability advocates have high hopes that the Build Back Better Act will bring some much needed increases for Home-and-community-based services. Learn about what advocates are hoping. 
• Input Needed: The Office of Science and Technology is looking for input on how technologies are used, or could be used, to better community health, individual wellness, and health equity. Comments are due by February 28. 
• Workforce Strategies: As we all know, for years there has been a national shortage of direct care workers. In a recent report done by the Center for Health Care Strategies, four key recommended. Learn what they are. 
• 2020 Caregiving Study: The National Alliance for Caregiving released its report with the results of the Caregiving in the US 2020 study. Find out what the study found.
• Lack of Candidates: Despite over a million people with disabilities wanting to work, new research shows that a key barrier to hiring people with disabilities is the lack of candidates.  Read about other factors that contribute the lack of disability representation in the work place. 
• Wisconsin Youth Leadership Forum: The Wisconsin Youth Leadership Forum (YLF) is a week-long, overnight leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities. Applications due April 1.
•  Helpful Resource: The National Center for Advancing Person-Centered Practices and Systems compiled a list of helpful resources for person-centered practices and related activities to enhance work supporting people with disabilities and older adults with long-term services needs. Check it out! 
• Medical Diagnostic Equipment: A final rule has been issued related to standards for medical diagnostic equipment. Learn about what the rule requires.
• Input Needed: The Federal Communications Commission is seeking comments on an action to improve the clarity and accessible of visual Emergency Alert System messages to the public, particularly to people who are Deaf or hard of hearing. Comments due on March 28.  
  

Upcoming Events

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

• The Intersection Of Race And Disability: February 15, 1p.m. to 2:30p.m., Online 
• Webinar: Accessible Swimming Pools And Spas: March 3, 1:30p.m. to 3p.m., Online 
• Disability Advocacy Day Of Change: March 16, 10a.m. to 12p.m., Online 
• 2022 National Self-Direction Conference: April 11-12, Hyatt Regency Inner Harbor, Baltimore Maryland 
• Circles Of Life Conference: May 12-13, Virtual or the Holiday Inn in Stevens Point Wisconsin 
• Employment First Conference: May 24th, Kalahari Resort, Wisconsin Dells Wisconsin 

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.

• Electronic Filers: Comments may be filed electronically using the internet by accessing the ECFS: https://apps.fcc.gov/​ecfs/​.

• Paper Filers: Parties who choose to file by paper must file an original and one copy of each filing.

Meet Krystal. This writer has overcome a challenging childhood and has learned writing helps her express her feelings. She’s learning that by helping people solve problems she’s making a difference in her own way. She also shares some great organizational tips with us. We’re so fortune to have her as a member of the Network!

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

Krystal shares with us that she had a difficult upbringing, but she has cut toxic people out of her life in order to change who she once was and become the best version she could be.

She explains that writing has helped me through all my experiences. She has some brain damage around the areas of my brain for expression, in addition to trauma. When she is unable to express my words verbally, she is able to pick up a pen and write what she means. “When I'm unable to communicate, my anxiety increases, and I develop a panic attack. I've learned early on that if I brought a notebook and pen with me wherever I went, my anxiety decreased. I learned early on how important every word was and became sensitive to the pain others felt,” she says.

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

Krystal tells us that she’s new to the SD network, so she hasn’t been much involved yet. She hopes to become an active member once she learns more about advocacy and how things are run.

She shares with us that her psychologist actually encouraged her to look at ways to share her knowledge and experiences. “I've been helping people on Facebook, Instagram, Quora, and other places with some problems they were forced to endure. How I saw it was making the difference in my own way. My psychologist helped me see this could reach more people and help people connect with resources they need, that my experiences were just as valuable as anyone else's," ’she explains to us. 

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

Krystal is excited about a couple of things. She’s glad there has been more awareness for childhood intellectual and developmental disabilities. She didn't even know she had a developmental disability until she began intense therapy when she was 24. “This helped me understand why I felt a disconnection when I spoke versus when I wrote. While I can't have gotten my diagnosis sooner, I hope we all can continue to advocate to improve the future for the younger generations,” she explains.

She also is excited about being able to connect with senators and give input on upcoming bills. She intends on talking to her senator about the upcoming bills about mailing votes and medical assistance programs.

She also wanted to mention that she’s happy that NAMI (an organization that supports mental health)is now in Manitowoc. This will help the community heal.

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

Krystal shares lots of tips on how to keep organized:

• Make a chores list for every room in the household (weekly). Laminate it and you can reuse it to keep track of what needs to be cleaned each week.
• Get into a routine. Set alarms and stick to them, even though you don't want to. This helps create structure and an understanding of how your body functions.
• Make a checklist of what you need to get done each day. Don't overdo it. Be mindful of how much stress you can handle and make room for in case of emergencies, sick days, etc. She shares that she was taught goals need to be realistic, something you can manage to do, starting right now. Build yourself up slowly from there. If you become too stressed, go back down and build yourself up until you're ready to handle it.
• Color-code information or things associated with each other. This helps reinforce your memory. She finds it easier to remember the color of a folder where I put my bills versus what file number they're in.
• Label everything and make sure it's easy to read. This way you know where something goes and takes stress off your mind.
• Exercise 3-4 times weekly. She highly recommends yoga—it teaches you about learning patience, calming the mind, and how to be present at the moment. 
• Eat whole wheat, fresh fruits, and lots of green veggies. Drink plenty of water. Having a healthy body keeps you energized so you can endure more and heal faster.
• Make time for yourself every day. Set up a certain amount of time doing something to learn about yourself. 

What are some of your hobbies?

Krystal enjoys learning about any topic and will research topics she’s unfamiliar with. She enjoys reading a good story and doesn’t have a preference in the genre.  Her biggest passion is writing. 

She also enjoys doing activities such as listening to music (lately getting into operas, orchestras, and piano), learning how to paint and draw from a variety of artists online (they offer free classes at Michaels, which got her started), and volunteering at Painting Pathways a few times a month. She tells us that one of their upcoming projects will be painting inspiring quotes on stones to place around Manitowoc County.

***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 U.S. Access Board released a direct final rule related to its standards for accessible medical diagnostic equipment (MDE) covered by Section 510 of the Rehabilitation Act. The MDE Standards, originally published in 2017, established minimum technical criteria to ensure that medical diagnostic equipment, such as examination tables, weight scales, and imaging equipment, used by health care providers is accessible to and usable by individuals with disabilities.

Learn more