News

Self-Determination Network News:
June 2022

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Family Caregiver Survey 

Are you a family caregiver who provides care to a loved one? 

Have you been unable to find direct care workers to hire? Are you picking up the pieces and filling in the gaps yourself? 

Are you employed full or part time, or not working to make sure your loved one had the care they need?

Have you worried what would happen if you suddenly became unable to do your caregiving duties because of physical injury or illness?

You are not alone.

We need your stories to show the policy makers the reality of many people’s day to day lives.

Please take the Survival Coalition Family Caregiver Survey before June 17, 2022. 

Survey results will be used to educate policy makers, shared with media outlets and advocates.

Call for Exhibitors 

The 2022 Self-Determination Conference will be held October 17-19 at the Kalahari Resort in Wisconsin Dells. Applications for exhibitors and microbusinesses are now being accepted. Microbusinesses have the unique opportunity to sell not only at the conference, but all year long. Visit www.allAmarket.org to sign up to sell merchandise year around. Click here to fill out the application to exhibit at the conference. Applications are due by July 20.

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 Kai. This resilient lady has recently learned that, through self-determination, she can build a support circle who will support and encourage her to be successful. Check out this month's Member Spotlight to get to know Kai.   

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:

• Gardens and jobs and ticks! Oh my!

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:

• Augmentative Alternative Communication Newsletter: Mike shared the newsletter from the Augmentative Alternative Communication Amplify program with us. Check it out and see what it's about. 
• Artificial Intelligence Guidance: Recently, two government agencies issued guidance on artificial intelligence. Learn about what the guidance explains. 
• EVV Reconsideration: The electronic visit verification process is using intense reconsideration. Read about why it's becoming a topic of heated debate. 
• Impact of COVID on People with Disabilities: When COVID hit, nearly every project funded by the Administration for Community Living's Institute on Disability, Independent Living, and Rehabilitation Research experienced delays and pivoted. Learn what grantees found.
• Assistive Technology State Plan: The Wisconsin Assistive Technology Advisory Council is looking for feedback on the 2021-2023 State AT Plan. Written feedback can be submitted until June 30.
• Accessibility Gains From the Pandemic: As the pandemic whines don't (or at least as things return to a new normal), many people with disabilities hope accessibility gains made during the last few years won't be forgotten. Find out what accommodations people hope will continue. 
• Watch: Many adults with disabilities often feel left hanging when they turn 18.A new documentary follows a young man with multiple physical disabilities as he navigates adulthood. Learn more and watch the film. 
• Digital Access Video Series: The U.S. Department of Education’s Office for Civil Rights (OCR) released a 20-part video series covering a variety of topics on digital access in education, including how people with disabilities use technology, applicable federal regulations, and identifying and remediating barriers to access. Check them out! 
• New Medicaid Waiver Rule: Federal officials say they are moving forward with implementing a Medicaid rules that standardizes what counts as home-and-community-based services for people with disabilities.  Read about what the rule entails. 
• Public Health Emergency Unwinding Resource: The Centers for Medicare & Medicaid Services recently released a new resource to help states understand and meet legal requirements for Medicaid and other programs when the public health emergency ends. Check it out! 
• Vaccine Information Website Accessibility: After many complaints about vaccine information websites being inaccessible for many people with disabilities, the Department of Justice came out with a fact sheet highlighting the guidance on website accessibility requirements and describes some of the actions taken to address inaccessibility of COVID vaccine websites. Learn what the fact sheet entails. 
• Core Standards for Information and Assistance in Self-Direction: A new resource has been developed to provide information to states regarding competencies and skills for professionals providing Information and Assistance in support of self-direction. Find out what this resource suggests. 
• Partners in Business: The Wisconsin Board for People with Developmental Disabilities is looking for businesses to partner with who are interested in hiring people with developmental and intellectual disabilities. Grantees are awarded up to $25,000 and technical support from the Board. Applications due June 17.

Upcoming Events

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

• Webinar: ADA Coordinator: Getting The Job Done: June 21, 1p.m. to 2:30p.m., Online
• Webinar: Pathways To Person-Centered Decision-Making And Alternatives To Guardianship: June 21, 2p.m. to 3:30p.m., Online 

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 Kai. This resilient person has recently learned that, through self-determination, they can create their own support system with the people and resources they feel comfortable with. They're confident that, with the right supports, one day they will be able to live independently without any support. We’re so fortune to have them as a member of the Network.    

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

Kai shares with us that they are a high functioning adult with numerous diagnoses. They tell us that they have had a lot of experience in advocating for themself and the communities that they are a part of.

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

Kai became involved in self-determination for multiple reasons. They explain that a good chunk of their life was spent being treated as either a helpless child or an incompetent, lazy individual by people who believed that they knew what was best for them. These experiences have taught that the only one capable of knowing what is best for a person with a disability is the person themself. “I didn’t even know that self-determination was a thing until this past year, which speaks volumes to the importance of advocating and spreading this crucial information to others in the disability community,” they say.

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

Kai is excited that they learning to advocate for themself. They explain that they are taking necessary steps to build a system that will enable them to one day live independently, without any outside support. “It’ll take time but, with the right resources and supports, I’m confident that it will one day be a reality. My reality,” they exclaim!

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

Kai shares that the Aging and Disability Resource Center of Dane County is a great place for those who live with a disability to get services, support and referrals to other resources in the community.

What are some of your hobbies?

Kai has many hobbies. They love to read and write stories, watch television or film, play games, consume food or drink she has never tried before, listen to or play music, spend time with animals, hang out with other people, cook food, make baked goods, mix cocktails, exercise, spend time outside, volunteer in the community, go to shows or events and much more! “I’m always open to new things, which means that I’ve developed a lot of hobbies and interests in my twenty-some years of life,” they tell us.

***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.

Applications to Exhibit at the 2022 Self-Determination Conference are now open
Turning Vision into Reality! October 17-19, 2022

The Core Standards for Information & Assistance Professionals in Self-Direction resource, developed with the generous sponsorship of Centene, is designed to provide information to states, managed care organizations, and other stakeholders regarding core competencies and skills for professionals providing Information and Assistance (I&A) in support of self-direction. I&A is essential for helping participants understand self-direction, navigate their program and its rules, and have a successful experience self-directing. An underpowered I&A function can limit not only a program’s growth and participant satisfaction but also its integrity, as one of the core functions of I&A is to provide additional program monitoring and safeguards.

A new fact sheet from the Department of Justice (DOJ) reiterates earlier guidance on accessibility requirements for websites under the Americans with Disabilities Act and describes some of the enforcement actions taken by DOJ to address inaccessibility of COVID-19 vaccine websites. DOJ reached agreements with several companies to address issues that limited people with disabilities in using vaccine scheduling websites, such as required information (like first and last names, birthdates, and zip codes) not being “read” to users of screen readers, and available vaccination times not being available to “select” by people using keyboards.

The ADA requires that businesses provide people with disabilities full and equal access to services including those offered online. Similarly, state and local governments must not discriminate based on disability including in services and programs provided online. Both must ensure that they communicate effectively with people with disabilities. As the aging and disability network continue to assist people with disabilities access vaccines and boosters, any suspected violations of the ADA should be reported to the Department of Justice.

The Centers Medicare & Medicaid Services recently released a new resource to help states understand and meet legal requirements for Medicaid, the Basic Health Program and the Children’s Health Insurance Program when the COVID-19 public health emergency (PHE) ends. 

With limited exemptions, states have not been allowed to disenroll Medicaid beneficiaries during the PHE. When the PHE ends, states will have to perform millions of redeterminations to see who is still eligible and who is not. To assist states with that work, the tool includes information on the requirements for eligibility renewals and redeterminations, application processing, fair hearings, coordination with the Marketplace, and other processes. It also highlights temporary options available to states during the unwinding period to facilitate eligibility and enrollment processing and to help retain coverage for eligible individuals. 

It will require “all hands on deck” to ensure the PHE unwinding period goes smoothly to avoid harmful gaps in coverage for people who rely on Medicaid to stay well and independent. The aging and disability networks are critical partners in ensuring older adults and people with disabilities can continue to receive the supports and services they need without disruption.

More info:

• CMS website on Unwinding and Returning to Regular Operations After the COVID-19 Pandemic
• ACL information on PHE unwinding for the aging and disability networks.

Federal officials say they are moving forward with implementing a Medicaid rules that standardizes what counts as home-and-community-based services for people with disabilities. The Centers for Medicare & Medicaid Services came up with a strategy to enforce the 2014 regulation that lays out criteria programs must meet in order to be community based and eligible for funding. The rule requires settings must be where people choose to be and have full access to the community. 

Read more

Do you get nervous speaking in front of a crowd? Have you ever done something courageous like skydiving? Being courageous and taking risks is something we all do. Granted, being “risky” means something different everyone. Some people are riskier than others. Some people enjoy trying a challenge, while others prefer to stay on the safe side. Obviously, there are thousands of different risks we take every day that we don’t even think twice about. Crossing the street. Riding the bus. Getting out of bed. The list is truly endless. Taking risks is part of life, and can often lead to opportunities the person never dreamed possible. There is also forced risk meaning people have no other option than to try the task at-hand. People with disabilities are no different. We take risks just like everyone else. In fact, we likely take more risks than the average person.

“I couldn’t do what you do,” people often say when they meet my parents and I. While it’s a nice compliant, it likely isn’t true. Yes, admittedly, thanks to the support I receive from friends and family, I’ve turned into a pretty determined person, but, what many people don’t understand, is that I have no choice but to be. I literally depend on the assistance of other people to live. That alone is a huge forced risk that I have no choice in. Regardless of my living situation, being dependent on others is a risk in and of itself.

The biggest and most important risk I’ve ever taken was 19 years ago when I decided to go to UW-Whitewater. Because all of my friends were going away to college, I didn’t even realize how big of a deal it was. To me, it was just the next thing to in life. I don’t even think I thought about it as a risk. Even though, I spent the summer before typing up my care instructions for caregivers I had never even met, I never thought twice about being on my own down there was a risk. It was just the way it was. Sure, when it came time for my mom and sister to leave, I felt emotional and a little scared, but I thought that was pretty normal of an 18-year-old college freshman. My first night care was with a really sweet college student who could tell I was pretty nervous (I’m Facebook friends with her now, and, sometimes I message her and just say thank you for putting me at ease that night). The next morning is when reality hit and I realized “ohhh, ok, maybe this is a bigger deal than I thought.”  The aide who was supposed to get me up was over an hour late. Mind you, this is the very first morning I had woken up completely alone. We didn’t even think about having a phone by my bed. I had no idea what to do. I ended up rolling off my bed onto the floor, rolling over to my computer desk where my phone was, pulled the phone cord down, the receiver clunked me on the head, and I was trying to call my parents to see what to do when the aide walked in. Yeah, yikes! It was quite a reality check to say the least. I always tell people that I have no idea what convinced me to stay after that! It wasn’t until after I graduated from college that I began to realize what a giant leap of faith it was to move two hours away from home having never really had other people assist me with all of my needs. By taking that risk and succeeding, I proved to everyone, including myself, that I could live independently if given the right supports. The decision to give it a try at Whitewater has shaped my entire life!

Now, 13 years after graduating college, I find myself taking more risks than I ever have. Hiring my own caregivers is a huge risk. I don’t have backup. If someone doesn’t show up, my parents have to come. It’s a risk for me and a sacrifice for them. We have to trust that these people will show up. Yes, there have been several times in the last six years that people didn’t show up for a shift and we never hear from them again. I also have to risk having people physically take care of me. Unfortunately, the system is so messed up that I can’t train people properly. Technically, in the IRIS program, you’re not supposed to be able to pay people to train (again I think the assumption is that most IRIS participants use family and friends); however, we worked it out so that I am able to compensate people for one shift of training (by using some of my Supportive Home Care hours). This may sound like plenty, but it’s really not. I make do with what I have and have the person jump right in and do the actual care. The other worker is there to guide them. The new person often feels stressed and under pressure, but it’s the only way to do it. Having one training shift, the person is expected to be able to do it alone (this causes a lot of people to quit, but that’s beside the point of this entry). The first shift the person works alone is a huge risk for me. I don’t really know if they can do it alone and I don’t know what they would do if something happened. I have to risk putting my life in the person’s hands.

Being nonverbal adds another layer of risk to almost everything I do. Yes, I use the app on my phone to communicate, but there are many times that I can’t access my phone. When I use the restroom, shower, or transfer anywhere, I can’t use my phone. This probably doesn’t sound like a big deal to most people, but those are the crucial times when the caregivers usually get flustered and need guidance. Unfortunately, as you can imagine, this can be very frustrating for caregiver and I. In fact, several years ago, on a caregiver’s first shift alone, a transfer didn’t go right and I ended up on the bathroom floor. The caregiver flipped out, called my dad (who lives 45 minutes away), and ran out the door crying leaving me on the bathroom floor. Thankfully, she called my dad and we’ve since changed the way we do things, but it just shows the risk I have having to trust other people to assist me.

Living alone is another risk I choose to take. Countless things could happen that could literally leave me stranded for days, but it’s a risk I’m willing to take. Some people with disabilities aren’t comfortable living alone and I totally understand that. Another risk I choose to take is being vulnerable and putting my story out there. Some people aren’t comfortable with sharing so much of their personal life with the world, and that’s perfectly understandable. No doubt it’s risky putting your life out there, but, personally, I’ve come to believe that one of my main purposes in life is to show others what people can do despite their limitations.

All that said, I don’t consider myself a risk taker whatsoever—in fact, far from it. In my family, I’m known as the person who needs a plan and hates when anything changes. I’m not one to jump on anything spontaneous. The major risks I’ve taken in life have been required in order to live the life I desire. Sometimes, risks don’t work out the way we want, but taking risks often ignites a flame in us to make dreams become possibilities!

***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.