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Member Spotlight: Jen Stauss


By SD Network, 2022-01-17

image0.jpegMeet 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. 

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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. 
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In recent years, accessibility awareness has become more and more prevalent. Everything from TV ads, to video games, to websites, accessibility is usually brought up some how in conversations. As great as that is, it's not turning into action.  There are gaps in accessibility because more training needs to be done. Accessibility awareness needs to be part of the culture.

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On December 31, the FCC launched the ACP. This program, created by Congress in the Infrastructure and Jobs Act, is a longer-term replacement for the Emergency Broadband Benefit (EBB) program. This investment in broadband affordability will help ensure households can afford the internet connections they need for work, school, health care, and more.

The FCC also launched a toolkit of materials for partners to download and customize to meet their needs. More materials will be added in the coming weeks.

The ACP provides a discount of up to $30 per month toward internet service for eligible households and up to $75 per month for households on qualifying tribal lands. Eligible households can also receive a one-time discount of up to $100 to purchase a laptop, desktop computer, or tablet from participating providers if they contribute more than $10 and less than $50 toward the purchase price.

Enrollment in the ACP is now open for households with at least one member qualifying under any of the following criteria:
  • Has an income that is at or below 200% of the federal poverty guidelines.
  • Participates in certain assistance programs, such as SNAP, Medicaid, Federal Public Housing Assistance, SSI, WIC, or Lifeline.
  • Participates in tribal-specific programs, such as Bureau of Indian Affairs General Assistance, Tribal TANF, or Food Distribution Program on Indian Reservations.
  • Is approved to receive benefits under the free and reduced-price school lunch program or the school breakfast program, including through the USDA Community Eligibility Provision.
  • Received a Federal Pell Grant during the current award year.
  • Meets the eligibility criteria for a participating provider's existing low-income program.

The 9 million households fully enrolled in the EBB program as of December 31, 2021 will continue to receive their current monthly benefit until March 1, 2022. More information about steps current EBB recipients must take to continue receiving the ACP benefit after March 1, 2022 will be available in the coming weeks.

For application questions, email ACPSupport@usac.org or call 877-384-2575.
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The Wisconsin Medicaid reimbursement rate for home and community-based services (HCBS) will go up by 5% effective January 1, 2022, through March 31, 2024. The increase comes from federal funding authorized by Section 9817 of the American Rescue Plan Act (ARPA). Programs benefiting from the increase include:

  • BadgerCare Plus Managed Care
  • Care4Kids
  • Children Come First
  • Children’s Long-Term Support (CLTS) Waiver
  • Family Care
  • Family Care Partnership
  • IRIS (Include, Respect, I Self-Direct)
  • Medicaid fee-for-service state plan services
  • Program of All-Inclusive Care for the Elderly (PACE)
  • SSI Managed Care
  • Wraparound Milwaukee

HCBS providers serve Wisconsin’s frail elders and people of all ages with disabilities, enabling them to live independently or in home-like settings in the community. These services are essential to meeting their daily needs and avoiding unnecessary institutionalization. Further, HCBS are shown to be a cost-effective alternative to higher levels of care, such as nursing home placements and hospital services.

This 5% rate increase will help providers get adequate reimbursement to recruit staff and maintain this important system that delivers such critical care.

Providers eligible for the rate increase will receive follow-up communications from DHS with operational details. Services will need to be coded properly to be reimbursed at the new rate.

Resources

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Federal officials are working to make sure that paid caregivers aren't being taken advantage of. The Department of Labor recently launched an initiative to protect the wages and rights of professional caregivers. The agency said it plans to educate these workers about rules related to minimum wage and overtime pay and how to file a complaint if their rights have been violated.

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2022 National Self-Direction Conference 

Monday, April 11 - Tuesday, April 12, 2022

Planning is well underway for the 2022 National Self-Direction Conference on April 11th and 12th in Baltimore, Maryland. We are thrilled to bring the self-direction community together again to share relevant policy updates, discuss innovative best practices, and highlight exemplary self-direction programs from around the country. We will share more information about our dynamic speakers and sessions in the coming weeks.


Before the holiday break, don’t forget to register for the conference and sign up for a showcase or sponsorship! 

RegistrationYou can register for the conference at our discounted early bird pricing here. 

Tools & Tech to Self-Direct ShowcaseAs an integral part of the conference, vendors have the chance to show off, explain, and demonstrate their tools or technology with an audience of state Medicaid administrators, Financial Management Services providers, managed care organizations, and other Medicaid stakeholders as a part of our Tools & Tech to Self-Direct Showcase.
We encourage anyone with a product or service that supports self-direction to be a part of the showcase. You can learn more about the showcase here

SponsorshipsDon’t miss your chance to reach self-direction program administrators, Financial Management Services providers, managed care organizations, federal government officials, and other partners during our conference. Sponsorships offer unique opportunities for your organization to network, brand, market, and advertise—boosting your visibility. 
View the Sponsorship Prospectus for a complete overview of all the latest opportunities.

Register here
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