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.

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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