Self-Determination Network
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?

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.

“When a person can make more money flipping burgers at McDonald’s or stocking shelves at Walmart than they can helping people literally live, it’s nearly impossible to find people.” I use something to that effect when I talk about the caregiver shortage. The workforce shortage has elevated to the crisis level in recent years, and now it seems to be even more of a dire situation. The national guard is assisting in some of the state institutions. Nursing homes are turning people away because they don’t have enough staff. People are going without care in their homes. Elderly parents are being forced to take care of their adult children with disabilities. It’s endless. Something has to give, but nobody seems to know what the solution is.

I’ll be honest--I’ve been extremely lucky for about a year and a half with staff. I’ve had a decent core group of girls who have been awesome about helping me cover shifts. They’ve also recruited friends of theirs to work with me. Sure, we’ve had rough patches where shifts weren’t able to be filled, but, for the most part, it’s been really good. Having said that, I’m finding myself scrambling to find people to hire. Right now, most of my workers are college students, and they have clinicals or internships. Then, ultimately, obviously they move on. They’re also typical “college students” and, to no fault of their own (I get it—I once was in college too), socialization often comes before work. As I get older, I notice how prioritizing changes with age. As the age gap grows and I deal with young kids, it’s very apparent that priorities differ with age.  

I knew it was coming and knew the drill all too well. I posted on the website where you can post a job without paying (the website only sends you a few applicants when you don’t pay, but most websites won’t even allow you to post unless you pay) and I posted on every Facebook job group I could find. I posted it on my own profile and ask my friends to share it as well. I always have my ad up on Handshake which is the student employment website for UW-Oshkosh, but I haven’t had much luck with that—I’ve been told students don’t look on it very much. With those advertisements up, this time, I’ve literally got three names. One of the people is a past caregiver’s daughter who has just graduated high school and finished the Certified Nursing Assistant (CNA) class and want to get some experience. The other two came from the website and we’re interviewing one of them (if she shows). I probably could use two or three more people, but I can’t find anyone even interested.

This is a common problem across the state. Workers in almost every field are desperately needed. It’s almost like jobs are competing against each other, and, unfortunately, caregiving is often considered “dirty work” which nobody wants to do. For the millions of people like myself who literally rely on caregivers to survive, it causes a serious problem.

Rates increased a little bit at the beginning of the year which definitely helps, but it’s nowhere adequate for what caregivers do. When people can make more money doing something mundane like working as a cashier at a dime store or flipping burgers and a fast-food joint, why would anyone want to make less money taking care of people which often involved very strenuous and disgusting tasks? There have been many discussions about this in the different councils I’m involved in. People also have brought up another great point—not necessarily in my situation at the moment, but, many times, caregivers also have lower economical status and often qualify to receive state benefits as well. There’s nothing wrong with this; however, those people often don’t want to work as many hours as they could in fear of not qualifying for things like BadgerCare. It’s very understandable, but where does that leave people like myself who literally rely on caregivers to survive? It’s a vicious cycle for everyone involved.

I’m hearing about a lot of agencies and nursing homes offering workers just outrageous bonuses to work. In fact, I have a worker who also works at a nursing home back in her home town, and she was telling me about how their paying workers a ridiculous amount to pick up shifts. I explained that while it’s awesome for her, it seems unfair to people in my situation because we literally can’t pay workers more than what the state allows (it’s illegal to pay people additional cash if you receive care through the state). Once people have worked with me for awhile, I try to show my appreciation by dinner every so often or something little like that. However, I understand that while it may be appreciated, it’s not enough to sustain workers.

I’m very blessed with amazing parents who will continue to fill in the gaps for me until they physically are no longer able to. While I have an awesome sister and brother-in-law who will help in the short term when that time comes, I’ll ultimately end up in a care facility. It’s mentally draining to constantly worry about cares. Between that and various medical issues, it has consumed my life in recent years. To the average person who doesn’t know anything about the “system,” when I talk about the caregiver shortage, they often can’t comprehend why it’s such an issue. Most people think that there are agencies that we can call who will automatically provide support. I find myself explaining unfortunately that’s not the case. When I explain the system a little, they are often flabbergasted how things really are.

I don’t have the solution to this massive issue. While I do think adequate pay and maybe some benefits would help, I don’t think that’s the whole issue either. People don’t want to work period. When you have an overall lack of enthusiasm to work and can make more money not working, how can you blame them? It’s going to come to a boiling point sooner than later, and something will be forced to change. I don’t know what that point is (and I’m scared to find out), but something has to give. All we can do is keep advocating and telling our stories about the crisis. It often seems pointless because it’s all we’ve been talking about for years now, but, eventually, something will have to change. I’m beyond ready to find out what that change is!

***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.

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. 

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.

Read more. 

• 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.

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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