News

Kaiser Family Foundation has published a new report, A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023. The report provides insight into one important measure of unmet need for home and community-based services (HCBS) across states.

A few highlights from the report include: 

• The number of states with waiting lists hasn’t changed significantly over time. Currently, 38 states have them.
• As of 2023, there are over 692,000 people on waiting or interest lists for HCBS services.
• Most people on waiting or interest lists for HCBS live in states that do not screen for eligibility before adding people to lists.
• Most people on waiting or interest lists are eligible for other HCBS services, but those services may not fully meet their needs.

Self-Determination Network News:

January 2024

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Disability Advocacy Day 2024

Save the date for the 2024 Disability Advocacy Day on Wednesday March 20th in Madison. It's on a Wednesday this year instead of the usual Tuesday. We'll be sending out information about details and registration in a few weeks. We hope to see you there!

Voting Lunch and Learns

2024 is a huge election year, and the Wisconsin Disability Vote Coalition has you covered! They will be holding virtual Lunch and Learns throughout the year about various voting topics. The first one (register here) is going to be Tuesday January 23rd from 12p.m. to 12:45p.m. It will be about registration and absentee voting. Another Lunch and Learn (register here) will be held on Tuesday February 6th from 12p.m. to 12:45p.m., and the topic will be voting rights and local elections matter. Make sure to keep up to date on voting issues by attending these events.

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 Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. Check out this month's Member Spotlight to get to know Brett.   

Who should we shine the spotlight on next?

Stacy’s Journal

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

• Tools to Help Strengthen HCBS: Recently, the Centers for Medicare & Medicaid Services released new tools that will help improve access for millions who receive home and community-based services through Medicaid. Learn about what these tools will help.
• Concerns over the the Census Questioning: The U.S. Census Bureau is considering changing the way it asks people about disabilities and advocates are concerned. Find out why advocates are concerned.
• Investment in Services: Recently, the Biden-Harris Administration announced actions and new data that will help expand home-and-community-based services.  Read about what actions are being taken.
• Guide to Accessible Travel: Traveling is generally fun and exciting, but it also can be stressful. This is especially true for many people who have disabilities. Check out this guide to accessible travel.
• Request for Comment: The Administration for Community Living is announcing an opportunity for the public to comment on the data collection requirements for the ACL Evidence-Based Falls Prevention Program Information Collection. Comments are due February 12th.
• Be your Best Self-Advocate: You are your own best advocate. Take a look at some great tips for being an advocate.
• Youth Leadership Forum: YLF is a week-long forum for high school with disabilities who want to learn more about leadership, self-advocacy skills, and career awareness. Share this opportunity with students who would benefit!
• What's Behind the Shortage: The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. Watch this news clip about what are the causes of the caregiver shortage.
• ABLE Limit Increase: Starting January 1st, people with disabilities are able to save more money in ABLE accounts which are accounts that allow them to save without jeopardizing their government benefits. Find out how much it increased.
• Digital Accessibility Guidelines: The Office of Management and Budget recently released updated guidance requiring federal agencies to improve their digital accessibility for people with disabilities. Learn about what the guidelines are. 

Upcoming Events 

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

• Webinar: Registration And Absentee Voting: January 23rd, 12p.m. to 12:45p.m., Virtual
• Transition To Adulthood: Healthcare And Advocacy: January 25th, 6:30p.m. to 8p.m., Independence First, Milwaukee WI 
• HSRC Webinar - Expanding Access To Service Coordination: Two Models Of Braiding Funding: January 31st, 1p.m. to 2p.m., Virtual
• Webinar: Designing Accessible Crosswalks: February 1st, 1:30p.m. to 3p.m., Virtual
• Webinar: Voting Rights And Local Elections Matter: February 6th, 12p.m. to 12:45p.m., Virtual
• Webinar: How To Begin And Grow An Adaptive Sports Program And The Resources Needed: February 8th, 1p.m. to 2:30p.m., Virtual 
• 2024 National Self-Direction Conference: March 14th-15th, Marriot Waterfront, Baltimore MD
• Disability Advocacy Day: March 20th, 10a.m. to 3p.m., Monona Terrance and the State Capitol, Madison WI
• Circles Of Life Conference 2024: May 16th-17th, Holiday Inn, Stevens Point WI
• Employment First Conference: May 21st, Kalahari Resort, Wisconsin Dells WI

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.

Can you present to this group? Could you write an article about it? Would you be able to attend this meeting? Could you speak to that group? Are you available to do this? Could you do that? Questions such as these consume our daily lives. Being asked to do certain things and asking others to do things is part of life. Like it or not, humans depend on one another to live. People have a choice whether or not to oblige to the task that they are being asked to do. Depending on the situation, individuals often perform the duty that they’re being asked out of respect for the person who is asking. It may be an employer asking an employee to a task, a family member asking you to do something, or a friend asking you for a favor. Whatever the case may be, you have a choice whether or not to do it. Sometimes, people have a hard time saying no when others ask them to do something. Most of the time, people enjoy helping others and being valued, so turning down an opportunity can be difficult. People who have different abilities are no different—we have a hard time turning down opportunities just like everyone else. The truth is that people who have some limitations probably have a more difficult time saying no to things than the average person because often we can’t do a lot of things due to our circumstances; so, when we’re asked to do something that we’re able to do, we feel immense pressure to say yes.

“I’m going to try to be very intentional about what I say yes to this year,” I said to my mom one night recently. She rolled her eyes and laughed because she knows how hard it is for me to turn down an opportunity. In past journal entries, I’ve written about the importance of feeling valued. Especially when you have some unique challenges, being and feeling valued is a detrimental part of life. However, it’s also equally important to realize when you’re spreading yourself too thin. I also wrote entries about this in years past—often, I say yes to too many things which puts a lot of stress on my body. It’s a fact that everything takes me a lot longer to do things than the average person. Years ago, I read that people who have cerebral palsy exert three times the amount of energy than the average person does.

During a session a few weeks ago, I was telling my counselor about how frustrating it was to be gone from work for so long over the holidays. I explained the situation to her. She then asked me a very good question: why do you hate missing out on work and advocacy so much? I told her it had nothing to do with the financial aspect of it. As we talked more, she figured out that work and advocacy are the things that make me feel valued most. In other words, I often feel useless when I’m not doing some sort of work or partaking in an advocacy activity. Obviously, learning this opened up a whole other thing to work on in counseling, but, in the weeks since, I’ve been really trying not to keep myself busy with work or advocacy projects all the time. I didn’t realize how much I relied on those things to keep me busy.

As I get older, I’m slowly realizing that there’s more to life than always trying to prove that you’re successful. As a person with a significant disability, that’s kind of a tough thing to grasp. I’m always trying to prove that I’m a contributing member of society and my main way of doing that is to engage in as many advocacy activities as possible. However, with some help, I’m realizing that I have other things that people value me for. I’m also learning that it’s okay to take some time to do nothing.

I’ve already turned down two advocacy opportunities this year. They were events that would have taken me hours to prepare for and I honestly didn’t have much interest in either of them. Will I agree to do various advocacy things? Absolutely. I love advocating and helping people. I just have to be selective about what and how much I agree to do. I’m going to try my best to be cognizant of how much I put on my plate. It’s not worth the stress and repercussions it causes.

For some people, turning down opportunities or saying no to things is really hard to do, but life is too short to overwork and stress yourself out. It’s just not worth it!

***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.

• Testing electronic content for accessibility before publishing and including disabled people during the digital design and testing user group process.
• Establishing digital accessibility programs and policies by designating a program manager to define and oversee digital accessibility processes, reporting, tracking, and resolving problems.
• Purchasing accessible products and services.
• Regularly scanning web content to assess whether accessibility requirements are met and prioritizing remediation.
• Cultivating a positive culture of digital accessibility, such as by offering training and education to employees on a regular basis.

Starting January 1st, people with disabilities are able to save more money in ABLE accounts which are accounts that allow them to save without jeopardizing their government benefits. The Internal Revenue Service increased the federal gift tax exclusion from $18,000. The new limit is up from $1,000 last year. 

Read more

The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. But despite high demand, many are paid little more than minimum wage. A longstanding workforce shortage means people with disabilities who depend on those workers are left without the support they need.

Watch clip

What is self-advocacy? In the 1800s, people with disabilities didn't have the opportunity to advocate for themselves. They were placed in institutions or hospitals and were not seen by the world. Big changes came in the 1960s when the civil rights movement started. The Americans Civil Rights Act of 1964 made it illegal to treat people unfairly because of their disability. The Americans with Disabilities Act later required to public services, communication, education, transportation, and other things. To be the best self-advocate is to know what to want and how to receive what you want. This column lists several points to help you advocate.

Read more

Meet Brett. This fun-loving guy is determined to make the best of life regardless of the circumstances. He is determined to make an impact on as many lives as possible. He is working to change the long-term care functional screen to make it easier for people. We are so fortunate to have him as a member of the Network!

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

Brett shares that he was born three months premature weighing 1 lb 15 oz. Due to this, he has cerebral palsy, but he doesn’t let it stop him. “I am always determined to make it impact in as many lives as I possibly can,” he says. 

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

Brett shows self-determination by not giving up. “I keep fighting every single day of my life. My life may not be perfect, but somebody always has it worse,” he tells us. He joined the Network to make a difference. 

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

Brett is working with legislators and stand functional screen for long-term care. “This isn’t going to happen overnight, but I’m not going to stop until it is changed,” he says.

What are some of your hobbies?

Brett enjoys watching TV and playing video games. He also loves spending time with his family and friends.

***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.

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