News
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Youth Leadership Forum Applications Open
By SD Network, 2022-02-05
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.
When/Where:
July 10 – 15, 2022 at Edgewood College in Madison, WI
The Youth Leadership Forum is for:
- Students who show leadership potential by being active in their school and community
- Students who have a disability (physical, learning, cognitive, emotional, sensory, etc.)
- Wisconsin residents
- Students who are currently sophomores, juniors or seniors in high school
Why Attend the Youth Leadership Forum:
- Learn more about college and career options
- Make connections with other young leaders in our state.
- Meet your state legislator
- Connect with energetic staff and speakers from across the state
- Have fun at a dance and talent show and many other memories you’ll never forget!
To Apply:
Complete the application by April 1, 2022.
Contact Jenny Neugart at jennifer.neugart@ wisconsin.gov if you have any questions.
PRESSWIRE.COM: Almost half of business leaders believe there aren't enough candidates with a disability despite over 1M disabled people wanting to work
By SD Network, 2022-02-03
New research shows that almost half of businesses believe that the key barrier to hiring people with disabilities is the lack of candidates. However, misconceptions, lack of representation, and taboos continue to be a significant factor in recruitment policies.
The National Alliance for Caregiving recently released Caregiving in a Diverse America: Understanding the Systemic Challenges Facing Family Caregivers in the U.S., a report based on results of the Caregiving in the U.S. 2020 study. The report highlights disparities in support, caregiving intensity, health and financial impacts among diverse caregivers. The report emphasizes the importance of considering culture and identity when facilitating access to programs, services and resources and tailoring support to meet the unique needs of caregivers. With much more work to be done, the report identifies key themes and areas of future research that are needed to meaningfully improve the caregiver experience.
CENTER FOR HEALTH CARE STRATEGIES: Four Ways to Strengthen the Direct Care Workforce
By SD Network, 2022-02-01
Direct care workers provide hands-on support to older adults and people with disabilities. For years, there has been a national shortage. Low wages, long hours, few benefits, and the demanding nature of the work has led to high turnover rates and this shortage. A recent report done by the Center for Health Care Strategies drew four key recommendations.
1.. Focus and organize state-level and advocacy efforts related to the direct care workforce shortage- The commitment of state leaders to a common goal is very important for making progress in the workforce shortage.
2. Use federal funding and flexibilities- the Build Back Better Act has potential, but is uncertain. There are other ways to access federal funding and flexibilities to support the workforce.
3. Prioritize DCW-related goals in Medicaid managed care contracts- Many states use managed care contracts for Medicaid services. States could use their contracts to expand and strengthen their workforce.
4. Recognize the deep value and importance of the profession- From the start, caregiving isn't consistently valued. States could promote the value and importance of the profession.
ADMINISTRATION FOR COMMUNITY LIVING: White House seeks input on strengthening community health through technology
By SD Network, 2022-01-31
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
PUBLIC NEWS SERVICE: Biden Administration Aims to Expand Home-Based Care for Medicaid Recipients
By SD Network, 2022-01-31
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.
DISABILITY SCOOP: Supreme Court Ruling Means Fewer Disability Providers Face Vaccine Mandate
By SD Network, 2022-01-24
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.
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.
January 2022
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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?
In December's journal entry, Stacy talked about how we are now sending tourists to space, but, yet, people who use wheelchairs can't fly in an airplane without worrying about our chairs being wrecked. Something doesn't add up - - she discussed how we need to make everything inclusive. Do you agree with her?
Stacy discusses how the direct caregiver shortage has become dire in this month's journal entry. Have you struggled to find caregivers?
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.
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.
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.