News

Many people with disabilities prefer to self-direct their care. Yet, because overall enrollment and awareness remain relatively low. There are many misconceptions about self-direction. This is an interesting opinion article trying to debunk some of the myths about self-direction.

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This analysis uses the 2022 American Community Survey to provide an overview of demographic characteristics, wages, and health insurance coverage of direct care workers, which include home health aides, personal care aides, nursing assistants, licensed practical nurses (LPNs), and registered nurses (RNs).

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This issue brief presents findings from focus groups with direct care workers and unpaid caregivers who provide HCBS including caregiver characteristics; physical, emotional, and mental caregiving demands of caregiving; their wages, finances, and opportunities for advancement; and what caregivers would like policymakers to know about their work.

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American Airlines has agreed to a record $50 million settlement with the U.S. Department of Transportation for violating laws that protect airline passengers with disabilities.  They are also accused of damaging thousands of wheelchairs from 2019 to 2023. The airline came under fire after a video of crew members mishandling a passenger's wheelchair went virtual.

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Meet Peter. This avid Wisconsin sports enthusiast loves connecting with others and hearing them share their story. He’s the founder of an organization that promotes Self-determination for individuals who have disabilities through the use of technology. He’s passionate about reaching out to businesses and organizations to raise awareness about how they can make things more accessible. We’re so fortune to have him on the Self-Determination Network!

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

Peter is 37 years old and lives with cerebral palsy. He works in the contact center at Exact Sciences. He explains that he has always been passionate about advocating for individuals with disabilities, striving to improve their lives so they can achieve independence and thrive comfortably. His journey in self-advocacy began in childhood when he wrote to the school superintendent, urging her to install automatic door buttons.

He shares that as he has grown older, he’s witnessed firsthand the positive impact advocacy can have for people with disabilities. “I am committed to ensuring that everyone has the opportunity to pursue the American dream,” he tells us. In addition to his advocacy work, he’s an avid Green Bay Packers fan and enjoy all Wisconsin sports. He also loves connecting with people through meaningful conversations, where each person can share their unique story.

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

Peter is the founder of an organization called Squeaky Wheel, dedicated to promoting self-determination for individuals with disabilities through technology. Their mission is to provide diverse communication tools and engage people with various disabilities in meaningful activities. 

He’s passionate about reaching out to businesses and organizations to raise awareness about Squeaky Wheel and help them understand how they can enhance accessibility. This includes reducing physical barriers, creating screen readers for individuals who are blind or visually impaired, and developing tactile solutions for those on the autism spectrum. He explains that they aim to create a more inclusive environment for people with sensory sensitivities.

In the future, he explains that Squeaky Wheel will evolve into a social network where users can discover accessible vacation destinations. Businesses will also be able to leverage Squeaky Wheel to develop solutions and set accessibility goals. Ultimately, Squeaky Wheel will empower individuals to achieve self-determination and transform our perspective on accessibility in the world.

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

Peter recently relocated from Arizona back to Wisconsin to be closer to his family and friends. “Having a strong support system enables me to live more independently and positively impacts my mental health, providing me with comfort and encouragement,” he says.

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

Peter shares that he has always relied on Access to Independence (an Independent Living Center) to stay informed about developments in the accessibility community. “They are well-connected within the Madison area and recently organized an accessibility gaming convention, among many other activities they promote,” he explains. 

What are some of your hobbies?

 In his spare time, Peter enjoys playing video games, going to Green Bay Packers games, and going out with friends. He tells us that he has gotten into podcasting as well and enjoys being able to share his opinions and views.

***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.

Getting married. Having a child. Switching careers. Moving to a different state. What do all of these things have in common? They are big changes to a person’s life. Any monumental change in life usually causes some sort of stress in people’s lives. The anticipation of whatever it is can bring on all sorts of emotions such as excitement, fear, and nervousness. For people living with disabilities, the monumental changes may sometimes look a little different, but we definitely still experience them. Change is hard for everyone—no matter what your circumstances are.

What happens when two major life changes happen at the same time? To put it bluntly, it’s pure chaos! For those who know me personally, they know how hectic the last couple months, actually years, have been for me. I’m not going to go into everything that has happened, but I’ll discuss the two big things that have been going on the last two months. To the average person, these two things probably won’t seem like a big deal, but, in my world, they’re life-changing. By the end of November, my entire life will be totally different than how it was at the beginning of October. Let me explain.

A little back story. Over a year ago, for various reasons, doctors recommended 24-hour care for me. There was no way I would be able to staff that by myself, so we had to find an agency. Really long story, there’s only one agency in my area that could possibly take me on. I had been on their waiting list since last October. We’d check in with them every few months to see where I was on the list. Well, between July and September, my care team (who I hired) basically fell apart. I unexpectedly lost five or six workers starting in June, and it became very apparent that something needed to change. I had a couple of great workers who stuck with me and tried to fill as much as they could, but we just couldn’t continue doing it. I was at my parents most of the time. We contacted the agency, and we finally connected with the right people and found out that that they were ready to take me on. The agency would staff 16 hours to start with, so I had to get a budget amendment approved which was a process in and of itself. I had to let the workers I still had know what was going on. That was a hard thing to do because some of them became good friends, but, thankfully, they understood. The original date the agency had given us ended up not working out for them, so I was at my parents another week while they supposedly straightened everything out.

I’ve transitioned to different care agencies or models a couple times before, so I knew what to expect and how rocky things would probably be. To say that it’s been an adjustment would be a huge understatement. Starting with all new people is hard –period. I don’t like using this limitation often, but, when you aren’t able to communicate verbally, it adds another whole layer. I have step-by-step instructions for everything I need done, but there are many in-the-moment things that can’t be explained in writing. In my case, hands-on training is an absolute must. My mom did a whole day training with two of the workers, and the intention was for those two workers to train others. So far, that hasn’t been working too well, but we’re really trying to give them a chance. At the time of writing this article, I’ve been with them for about three weeks, and my parents have had to come up about 95% of the days for one reason or another. It’s been pretty crazy to say the least, but things have gotten a little better over time.

Having someone with me all day has been an interesting adjustment as well. For years, I was by myself from 9a.m. to 4p.m. I tried to feed myself finger foods for lunch and didn’t use the restroom for about nine hours. Obviously, this was a huge reason why doctors recommended more care. It’s been an adjustment, though. Having someone at my apartment while I work is new to me. I’ll probably write about in detail in another entry, but, as challenging as it is, it’s also so much healthier and safer for me. In time, once things get settled, I hope to be able to go into the community a lot more since someone will be with me all the time. Right now, having an agency is a lot more stress than doing it on my own, but, eventually, it should be a lot less stressful for my family and I. That’s the goal.

I’m also moving in less than two weeks. In a previous entry awhile ago, I explained how I was on a waiting list for a different apartment for over two years. Well, low and behold, we learned that my name was at the top of list again. This time, we were able to do the intake meeting, and, about a week later, I received a call saying that three apartments were open. My parents and I set up a time to look at them. We looked at all three to determine which one would work best. We thought one would work pretty well, so I took the leap and signed the contract. Now, moving is stressful for anyone, but, when you need accommodations, it adds another level! This apartment building has an inner doorway and tenants have to buzz people in using an intercom system. There is an intercom in each unit, but the problem is that I won’t be able to reach it from my bed in the morning to let my caregiver in. We are trying to figure out the best solution to that. An electronic door has to be installed on my actual apartment as well. Among other less major things, it’s a lot to figure out in a short amount of time.  My current apartment still has a lot of issues, and the new place will be much safer and less stressful for me. I’m beyond excited to move, but it’s a lot of stress trying to figure everything out.

Do I wish both major changes wouldn’t coincide with one another? Absolutely. The amount of stress that this has put on my parents is palpable, but that seems to be how life works—everything happens at once. I’m so grateful that my parents are able and willing to help me figure everything out. I’ll write about both of these changes in more detail in upcoming entries.

“Next year will be your year,” friends kept telling me when I confided to all that has been going on the past couple of years. Moving and getting cares figured out have been on top of my personal to-do list for awhile. Due to other things that have happened in my personal life, I won’t be able to say that 2024 has been the greatest year; however, I’m hopeful that this is the start of a great stretch of good things to come for me and my family!

***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.

There’s a growing number of us who are Millennials or Generation X and struggle to balance the obligations of parenting school-age children, caring for elderly loved ones, and working for a living. Unsurprisingly, one-third of people who must serve as caregivers for family members ultimately have to quit their jobs, according to a Harvard Business School study.

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Federal data shows that the number of people with disabilities finding employment is increasing. Disability advocates credit the rise in remote work. Learn more about the different ways remote work supports workers with disabilities.

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