The White House Office of Science and Technology Policy (OSTP) has published a request for information (RFI) soliciting information on how digital health technologies are used, or could be used in the future, to transform community health, individual wellness, and health equity. Comments are due by 5:00 PM ET on February 28 and can be submitted via email to connectedhealth@ostp.eop.gov or via phone at 202-456-3030. 

The RFI specifically requests input on several areas of interest to ACL’s networks, including:

• Barriers to the use of digital health technologies in community-based settings faced by individuals or organizations. Read more

Advocates are hopeful that the Build Back Better Act will move forward in some form. The Act aims to expand access to services for people with disabilities. This would include better pay for home-based care Workers. Lawmakers say Build Back Better will probably pass year, but it's unclear whether the $150 million tentatively saved for Medicaid Home-and-community-based services will remain. 

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Some workers supporting people with developmental disabilities across the nation will still be required to be vaccinated against COVID-19 despite a recent ruling from the U.S. Supreme Court blocking a wider mandate. The high court struck down a mandate requiring vaccines or regular testing for employees of big companies The court upheld a rule requiring workers at facilities, home health agencies, and other providers  that receive Medicaid or Medicare funding to be vaccinated. 

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After a recent defeat, Disability Rights Wisconsin is moving forward. The recent package includes a paper ballot mandate which poses a problem for some voters with disabilities. The current law does not include such mandate and some voters already use accessible voting machines. 

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Self-Determination Network
January 2022

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

Disability Advocacy Day of Change 

Disability Advocacy Day of Change will be held virtually on March 15, 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.   

Watch for registration information coming soon! 

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 December, we shined the spotlight on Stefanie. Growing up with a sibling with a disability shaped her outlook and passion in life. She enjoys making self-determination the center of peoples lives. Stop by and get to know Stefanie in the December Member Spotlight. 

This month, we shined the spotlight on Jen This outgoing self-advocate does everything she can to change the world’s perception of Down Syndrome. She encourages everyone to advocate to achieve their girls and to set high expectations. Check out this month's Member Spotlight to get to know Jen.   

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:

• Job Coaching and Fading
• Advocacy and Goal Setting
• A Look Back at 2021 at the Self-Determination Channel 
• "Treat me like everyone else" 

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

Join us to Film a Video 

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

• Assistive Technology Brief: The National Assistive Technology Act Technical Assistance and Training Center released a new issue brief that describes how AT Act programs are supporting people who are experiencing long-term effects of COVID. Learn what these programs offer. 
• EVV Study: A research firm recently did a study on the affects Electronic Visit Verification (EVV) has on care. Find what what the study revealed.
• Video Games Open Doors: Advancements in video game technology have made it possible for people with disabilities and health conditions to be able to experience outdoor environments without having to leave their house. Read about video games have become an unusual assistive technology tool. 
• "Silent Majority": Why doesn't the disability community have more political power? There are over 61 million people living with a disability and yet  they still have little involvement in the political arena. Read more about how the disability community continues to lack in politics. 
• Largest Home-and-Community-Based Services Increase Moves Forward: A $1.9 trillion bill that includes many different supports for home-and-community-based care and senior services was passed by the House of Representatives recently. Read about what this bill would include. 
• Take Survey: The Southwest ADA Center is conducting a study on video game accessibility for people with disabilities. The survey closes February 28.
• Airport Program: Mitchell International Airport in Milwaukee recently launched a program to assist adult travelers who have disabilities. Find out how the program works. 
• Accessible Routes at Historical Museum: Recently, the Smithsonian Museum of Natural History held a ribbon-cutting ceremony to celebrate the installation of new sloped walkways for accessible entry on the National Mall side of the 111-year-old building. Read more about the accessibility change. 
• State Transition Plan Submitted: The Wisconsin Department of Health Services (DHS) has submitted the updated statewide transition plan for final approval to the Centers for Medicare & Medicaid Services (CMS). Learn what changes were made. 
• Cracking Down on Caregiver Mistreat: Federal officials are working to make sure that paid caregivers aren't being taken advantage of.  Learn about what the Department of Labor is doing to try to prevent some of the mistreatment. 
• Rate Increase: The Wisconsin Medicaid reimbursement rates for home-and-community-based services went up 5%. Learn what programs this applies to. 
• The Affordable Connectivity Program: The Federal Communications Commissions  launched a longer-term program to replaced the Emergency Broadband Benefit Program. Read about what the program would help ensure. 
• Accessibility Awareness: In recent years, accessibility awareness has become more and more prevalent in conversation, but those conversations haven't necessarily turned into action. Read about how some people feel that accessibility should be part of the culture.
• Vaccine Information: The Administration for Community Living recently released a good informational sheet about COVID vaccines and boosters. Check it out! 
• Doctors Unclear about Obligations to People with Disabilities: A new study finds that many doctors don't know their obligations to people with disabilities. Learn about what some of requirements are.  

Upcoming Events

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

• Webinar: Accessible Signage: February 3, 1:30p.m. To 3p.m., Online 
• Disability Advocacy Day Of Change: March 15, Online 
• 2022 National Self-Direction Conference: April 11-12, Hyatt Regency Inner Harbor, Baltimore Maryland 

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.

Meet Jen. This outgoing self-advocate does everything she can to change the world’s perception of Down Syndrome. She works with a national organization that works to change the conversation about intellectual disabilities. She encourages everyone to advocate to achieve their girls and to set high expectations. We’re so fortune to have her as a member of the Self-Determination Network!

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

Jen is 45 years old and has  Mosaic Down Syndrome. She’s a lifetime ambassador for a nonprofit down syndrome organization called Nothing Down which is based in New Jersey. She explains that Nothing Down works to change the how the world views Down Syndrome.  She explains that they work tirelessly along with their filmmaker to change the conversation about intellectual disabilities. There’s been a huge transition from the negative stigmas that were so common not too long ago. They have produced 14 viral projects. They have been featured on media outlets such as MSN, The Today Show and many more. At the beginning of 2018 they formed an International Ambassador Program and now has over 60 ambassadors across the globe. The ambassadors have become the face of Nothing Down, representing the organization in eight different countries and in 22 US states. Jen loves being an ambassador because, “Having my voice heard on the issues that are important. Helping people feel more enabled to take control and providing practical support to overcome health and social care issues for our loved one with Down syndrome is what I love to do.” 

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

Jen got involved in self-determination to advocate for herself and others to get the support they need to live successful lives.

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

Jen is currently taking the Partners in Policymaking class through the Wisconsin Board for People with Developmental Disabilities. She hopes to change the way people view Down Syndrome. She’s not sure what exact policies she’d like to see changed, but things like supporting children in school, stop bullying, and making sure all kids are included and accepted are extremely important to her. “I know as I was included and accepted, but others aren’t,” she tells us.

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

Jen encourages people to set goals and advocate to achieve those goals that act as barriers. People should also participate in discussions that impact their quality of life and make choices based on personal preferences and interests. “Most importantly, keep high expectations of yourself,” she says. 

What are some of your hobbies?

In her spare time, Jen enjoys watching TV (she loves WWE) and movies. She also likes to do things like listening to music, exercising, writing, baking / cooking, being mindful, writing, practicing self-care, and going on adventures.

***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.

A new study finds that many doctors don't know their obligations to people with disabilities. Most of the doctors surveyed reported that they had little to no knowledge of their legal requirements under the Americans with Disabilities Act and didn't know who determines reasonable accommodations. Studies show that people with disabilities often receive substandard care. Examples of this would be people who use wheelchairs often get examined in their chairs rather than on exam tables and people who are deaf often go without an interpreter at their medical appointments. 

Read more

We've summarized the latest CDC guidance on vaccines and boosters below. Check our vaccination resources page for the latest guidance and resources.

Booster Shots

Who? CDC now recommends booster shots for everyone 12 years old and older.

When? Depends on which vaccine you received initially:

• Pfizer-BioNTech or Moderna: You should get a booster FIVE months after your last primary dose.
• Johnson & Johnson/Janssen: You should get a booster TWO months after your primary dose. 

Which vaccine should you get?

• CDC recommends the Pfizer-BioNTech vaccine for children and either the Pfizer-BioNTech or Moderna boosters for adults, regardless of which shot(s) you got initially.
• Johnson & Johnson’s Janssen vaccine is NOT recommended except in limited circumstances.
• You do NOT need to boost with the same vaccine you received initially.

Additional Primary Doses for People who are Immunocompromised:

Who? Moderately or severely immunocompromised people five and older who received initial doses of the Pfizer-BioNTech or Moderna vaccines.

When? 28 days after your second shot.

Which vaccine? Get the same vaccine you received for your first two doses. (CDC does NOT recommend mixing and matching for your additional dose).

Keep in mind: This is NOT the same as a booster shot, if you are 12 or older you should still get a booster shot after you complete your primary doses. In other words, you should get a booster five months after your third Pfizer or Moderna shot or two months after your single Johnson & Johnson shot.

Getting your vaccine or booster

• Find a vaccination site: Visit vaccines.gov, Text your ZIP code to 438829, or call 1-800-232-0233.
• Help for people with disabilities: The Disability Information and Assistance Line (DIAL) can be reached by calling 888-677-1199 or by emailing DIAL@n4a.org any time. 
• Help for older adults: Call the Eldercare Locator at 800-677-1116 or visit the website to chat live or browse resources.