President Biden is pushing to improve support for people with disabilities living in the community. In the State of the Union address, he urged Congress to add funding for Medicaid home and community based services. The President included $150 billion in his budget request for the 2025 fiscal year to " strengthen and expand Medicaid home and community based services" over 10 years.

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Self-Determination Network News:

March 2024

Connect | Share |Learn | http://sdnetworkwi.org

2024 Self-Determination Conference Call for Presenters

Are you interested in presenting at the 2024 Self-Determination Conference?  Session proposals for are now being accepted for Tuesday, October 22nd and Wednesday, October 23rd, 2024. This year’s theme: A Seat at the Table: Nothing About Us Without Us! will help people with disabilities have a voice in supports they need to lead a more Self-Determined life. Proposals due by on May 10th. Submit an application today!

Make a Plan for the Next Election 

April 2nd is an important statewide election. Join the Wisconsin Disability Vote Coalition on Thursday March 14th from 12p.m. to 12:45p.m. for a Lunch and Learn webinar that will help you prepare by discussing what you may find on your ballot, how to find non-partisan candidate information, how to get involved in this election year, and more. You will also get the most up-to-date information about this year’s elections. Register here.

Disability Advocacy Day is March 20th 

We're looking forward to seeing many of you in Madison on March 20th for Disability Advocacy Day, but we understand that some people can't make it. For those who can't come, we want to encourage you to call or email your legislators. You can share your story and tell them what you'd like to see done. You can still let your voice be heard even if you are not able to attend!

Please Help InControl Wisconsin's Caring Across Cultures Project

Are you someone who hires direct care workers?  Are you a family member of someone who receives support from a direct care worker?  Are you a direct care worker?  If so, InControl Wisconsin would like you to share a short video, audio clip, or written story of your personal experiences to help others understand the relationships between direct care workers and the people who hire them.  We will give you questions to answer, to make it easier for you.

Your stories will be used in online learning courses and/or other resources hosted on InControl Wisconsin’s website as part of the Caring Across Cultures learning platform. (See this link for more details about the project.)

Why are we asking for your help? Caring Across Cultures is a project with a goal of helping direct care workers and the people who hire them to build strong relationships. We want to help them connect and build trust across cultural differences.

What better way for someone who is thinking about hiring direct care workers to hear directly from people who are already doing it? The same is true for someone thinking about becoming a direct care worker. There’s nothing like hearing from someone first hand about what it’s like.

You can record a video or audio clip yourself with your phone (or other device) or you can ask us for help.

Here is a document to help you record your own video or audio.  This document will also tell you how to send us your finished recording: CLICK HERE

Need some help?

• You can work on this at home. If you need some help, Contact Sarah Godfrey, at sarah@promotelocal.com / (262) 349-1968, and she will schedule a phone or video call with you.

• Are you coming to Disability Advocacy Day, State Capital in Madison, March 20th?  We will have recording equipment on site.

Ready to Do This?

• Sign up here! 

• Questions for you to answer when you record yourself

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 Lindsey. This talented author, illustrator, artist, and motivational speaker has proven many people wrong. Check out this month's Member Spotlight to get to know Lindsey.   

Who should we shine the spotlight on next?

Stacy’s Journal

"There is no such thing as a right level of caution. It’s an individual choice."

In this month's journal entry, Stacy talks about how people have different levels of caution. She explains why she has to be a very cautious person.

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

• Prioritizing Accessibility and Inclusion: According to the World Economic Forum, of the 90% of companies that claim to make diversity a priority, only 4% are inclusive of people with disabilities. Learn what steps companies can take to improve efforts by focusing on communications and events.
• Technology Grant Opportunity: The National Institute on Disability, Independent Living, and Rehabilitation Research announced a new grant opportunity on information and communication technologies access. Applications due April 15th. Learn more about this opportunity.
• Fall Internship Program: The American Association of People with Disabilities is offering a paid internship to students and recent graduates with disabilities. The internship will help interns build leadership skills, explore career opportunities, and connect with the disability community.. Applications due March 13th.  Find out more and apply today!
• Volunteers Needed: Volunteers are needed for a research study on people who have sustained spinal cord injuries. Read more about this study.
• Initiatives for the Direct Care Workforce: The US Department of Health and Human Services recently announced several initiatives and resources to help with the dire need for caregivers. Read about the initiatives.
• Employment Record: The number of people with disabilities who are employed has reached a record high. Find out how much it jumped.
• Public Comment Wanted: The Federal Emergency Management Agency published an interim final rule that seeks to simplify processes, remove barriers to entry, and increase eligibility for certain types of assistance under their Individual Assistance program. Public comment is open until July 22nd.
• Proposed Rule would Ensure Airline Dignity for Passengers: Recently, the US Transportation Secretary announced a new proposed rule that would ensure that airline passengers who use wheelchairs can travel safely with dignity. Find out about the standards airlines would need to follow to accommodate people. 

Upcoming Events 

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

• Lunch And Learn: Make A Plan For The Next Election: March 14th, 12p.m. to 12:45p.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
• Webinar: What's New With WCAG 2.2?: March 21st, 1p.m. to 2:30p.m., Virtual
• 2024 Annual Disability Statistics Conference: Surveys, Statistics, And Identity: March 28th, Virtual or Washington D.C.
• Supported Decision-Making Webinar: April 10th, 1p.m. to 4p.m., Virtual
• Know Your Rights Webinar For Family Members: April 24th, 12p.m. to 1p.m., Virtual
• 7th Annual Older Adult Mental Health Awareness Day Symposium: May 2nd, 9a.m. to 4p.m., Virtual 
• 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.

Recently, U.S. Transportation Secretary Pete Buttigieg announced a new proposed rule from the U.S. Department of Transportation that would ensure airline passengers who use wheelchairs can travel safely and with dignity. The proposed rule would require that airlines meet standards for accommodating passengers with disabilities.

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The Federal Emergency Management Agency (FEMA) published an interim final rule (IFR) that seeks to simplify processes, remove barriers to entry, and increase eligibility for certain types of assistance under their Individual Assistance program. These changes will help make it easier for people to receive the assistance they need after a disaster, which is especially important for people with disabilities and older adults, who are disproportionately affected during and after disasters due to accessibility needs.

Among other things, the interim rule:

• Increases eligibility for home repair assistance.
  • This includes allowing survivors with disabilities to use FEMA funding to make certain accessibility improvements to homes damaged by a declared disaster. This change helps survivors with disabilities improve their living conditions by making their homes even more accessible than they were pre-disaster.
• Makes improvements to program registration requirements.
• Simplifies the documentation requirements for continued temporary housing assistance.
• Simplifies the appeals process.
• Establishes additional eligible assistance for serious needs, displacement, disaster-damaged computing devices, and essential tools for self-employed individuals.

The IFR goes into effect on March 22. Comments can be submitted online until July 22. FEMA will then consider whether to make changes to the rule on the basis of comments received.

Meet Lindsey. This talented author, illustrator, artist, and motivational speaker has proven many people wrong. She’s excited to be a keynote presenter at an upcoming conference. She believes that it’s Important for people understand that it’s ok to ask for help. We’re so fortunate to have her as a member of the Network!

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

Lindsey shares that she was diagnosed with autism when she was 28 months old. Her family had given little hope from others. She explains that they were told that she would never drive a car, get a job, go to college, or never live independently. She has proved them wrong over and over. She does drive a car, she graduated with an Associates Degree from UW-River Falls, she works full time at Target, and she’s a homeowner with her sister! She’s a co author, artist and illustrator, and a motivational speaker. She and her family wrote their story together to help other families living with autism. She’s also a coauthor with her aunt for the children book series entitled, Little Lindsey. “We both want everyone of all ages to learn and understand what it's like living with autism,” she says. She has been an artist since I was 13 years old and presents her work in art shows. She’s an illustrator for Koda the Fluff, Florida’s famous therapy dog, as well!

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

Lindsey tells us that a couple years ago she heard about the Self-Determination Conference from her friend, Ashley Mathy. “She sent me information about it. Thanks to her, I was a keynote speaker in the fall of 2022,” she excitedly shares! She decided to join the SD network because she wants to share her story and help 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? 

Lindsey is excited that she will be a keynote speaker at the Employment First Conference this spring in Wisconsin Dells! 

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

Lindsey stresses that it’s okay to reach out for help. “You are never alone. You all matter. You are always welcome to share your story to help other people. Always be yourself. You have the capacity to be anything that you want to be,” she exclaims!

What are some of your hobbies?

In her spare time, Lindsey loves drawing, hanging out with friends and family, reading books, watching movies, traveling, and going out for walks.

***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.

Stepping off a sidewalk curb. Running down the stairs in your house. Cutting fruit for dinner. Crossing the street to get the mail. What do these things have in common? They all have a physical factor of caution. Obviously, most adults don’t think twice about doing any of these things. Simple tasks become second nature as children grow into adults. When was the last time you actually thought about being cautious when you were running down a staircase to do something? Unless there are obvious sign of danger, most people don’t even think about the hundreds of risks they take in a day. Albeit, very small in most cases, every single thing we do has some level of caution associated with it. Some people are known to be more cautious than others. It’s no different when it comes to people with disabilities—some of us are way more cautious than others.

In a journal entry about a year ago, entitled, Dignity of Risk, I talked about the big risks I’ve taken in life. I explained that the big risks I’ve taken have taken have led to opportunities I’ve never could have imagined and have really shaped my life. While that’s 100% true, there are several things that I have to do very cautiously every day.   Most things that I have to be careful are that most people wouldn’t have to even think about.  Things as simple as turning on my wheelchair after I’ve been sitting at my computer desk working all are things that I have to really careful while doing because if I hit my phone off the mount, I couldn’t contact anyone until my next worker came. This has happened a couple of times before, and it’s a scary feeling. As minute as this sounds, another example would be when I feed myself lunch, I have to be very careful not only that I don’t drop the food, but I also have to be very cautious that I don’t choke myself. Until recently, this wasn’t a huge concern; however, within the last month or two, I’ve noticed that eating has become a bit more difficult. So far, fortunately, I’ve been able to clear my throat on my own by coughing, but, when I feed myself lunch, nobody would be here to help me if I were to actually choke. I have to be very cautious when I eat by myself.

Another thing that I have to be very careful about is moving around my apartment by myself. Yes, my apartment is accessible, but if a tire on my wheelchair would get caught on a doorway or something, I would literally be stuck until someone came to help me. Yes, I would have my phone so I could text people for help; however, depending on the situation, I could be stuck in the same spot for hours. Being stuck isn’t the only thing I have to worry about. A power wheelchair is like an automobile—things wear out and the you experience mechanical problems from time to time. This is what I’ve been experiencing recently. As luck would have it, the day before I was supposed to come back to my apartment after the holidays, an error message started flashing on my joystick. We called the wheelchair place, and they had us try a couple different things; none of which got rid of the error. They said as long as it was working OK, I should be fine to go back. It continued to flash, so a couple weeks later, I had a doctor’s appointment in Fondy and we arranged for my wheelchair to be dropped off at the shop so they could determine what was wrong with it. They thought it was the joystick, so a new one was ordered. Well, it finally came in and my wheelchair guy came to my apartment to replace it. Unfortunately, the error message popped up on the new joystick, so it wasn’t what they thought. Knock-on-wood, the chair is still working fine, but I find myself being even more cautious when I’m alone. I’m so afraid of getting stranded.

Other unique things that I find myself being overly cautious about are things that seem miniscule to most people. A simple task like restarting my computer can be risky to do when I’m alone. I have so many pieces of adaptive equipment that plug into my computer that when I have to restart, it’s always a gamble whether or not everything is going to work. If a piece of equipment isn’t working, I have to wait until someone is here to unplug it and plug it back in.

There are several things like that where if I attempt to do it myself, I risk the chance of doing more harm than good. In other words, if I attempt to do something myself, I risk messing it up. I’m constantly trying to balance being cautiously independent and risking messing whatever it is up to the point where I can’t proceed without assistance from another person. At times, it can be mentally wearing trying to be as independent as possible; yet, having to use an abundance of caution at the same time.

While most people likely don’t realize it, every single person uses some level of caution on a daily basis. Caution is a human instinct. People have a wide variety of caution. Some people are overly cautious; while others are riskier. Being a cautious person comes with pros and cons. On one hand, you may miss out on opportunities because you like to play it safe, but, on the other hand, playing it safe gives you assurance. Each of us has to find a balance of caution that she/he feels comfortable with. There is no such thing as a right level of caution. It’s an individual choice. I challenge you to test your level every once in a while—by doing so, it could lead to something you’d never dream of!

***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.

The number of people with disabilities across the country who are employed is at its highest level since federal officials started keeping track. According to the U.S. Department of Labor’s Bureau of Labor Statistics, 22.5% of people with disabilities had jobs in 2023. That’s an increase of 1.2 percentage points from the year before.

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New TA Opportunities and Resources To Address the Dire Shortage of Direct Care Professionals

Development and Leadership Opportunities Open for Youth with I/DD

• Youth Steering Committee (YSC) Member: The YSC is a group of youth ages 17-26 who guide the center's design and operation. The YSC guides the work plan, develops resources, and supports evaluation efforts. YSC members receive ongoing support and education to build their knowledge about health care transition and leadership skills.
• Youth Development Initiative (YDI) Committee Member: The YDI is a group of youth ages 12-17 with I/DD who will receive training and mentoring by young adult leaders also with I/DD. This initiative will help them understand health care transition, advocacy, and self-determination. These skills support youth in their own transition and prepare them for potential leadership opportunities.