Meet Rosie. This Diehard Award winning very determined survivor and author travels around the world sharing her story of hope and perseverance. Her story has helped medical professionals, researchers, and advocates create needed changes to practices in medical facilities. She’s also a big advocate for Diversity, Equality, Inclusion, and Accessibility.  We’re so fortunate to have Rosie as a member of the Self-Determination Network!

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

This widow, mother, grandmother and educator is a fighter. In August of 2009, she underwent a total right knee replacement that developed into a MRSA staph infection. She explains that this healthcare acquired infection has led to 58 surgeries, over 200 hospitalizations more than 100 blood transfusions, more than 15 incidents of septic shock, a right leg amputation six inches above the knee, a total hip amputation, the removal of most of her pelvic bone and all the tissue to her waist on the right side. She shares that she also has suffered from C-dif. She developed it when she was in a coma because doctors had given her antibiotics to treat everything, they thought might be causing her infection and septic shock.

As she continues to battle this MRSA infection in her body, she’s driven to share her story of survival. “I believe in helping others with disabilities and other health concerns find their voices. I use my story to co-design with medical professionals, researchers and to advocate for patients and their caregivers,” she tells us. She has also written a book entitled, “Rosie’s Story, A Story of Faith, Hope, and Survival.” It isn’t found on Amazon because she signs every book. If you would like a copy, she says that people can email her.

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

Rosie shares stories about living with a disability. She helps healthcare organizations and communities around the world understand the lived experience of individuals living with a disability. “As the world looks at Diversity, Equity and Inclusion (DEI), I encourage them to look at Accessibility or DEIA because without accessibility there won’t be any diversity, equity, or inclusion. Without the self-determination of individuals with disabilities change will not happen,” she says. She joined the SD Network because she believes the voices of many helps to create change for all individuals living with disabilities.

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

One of the most exciting and humbling experiences that happened to Rosie around self-determination was at the Wisconsin Self-Determination Conference last year when received one of the Diehard Awards. She shares that she also values being a member of the IRIS Advisory Committee because she’s able to share not only her experiences as a participant, but also the experience of other participants. “Finally, I appreciate that I was asked to share my story, my experience as a participant, and being able to present with both people from the Ombudsman and DHS at the Self-Determination Conference the last two years respectively,” she tells us.

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

Rosie’s go-to resources are the DHS website or calling DHS; she also encourages people to join the SD Network directly.

For her tip, Rosie really encourages everyone to attend the Wisconsin Self-Determination Conference. “You will meet many individuals living with disabilities that live a very self-determined life and will learn about many resources available to you,” she explains.

What are some of your hobbies?

Rosie tells us that she doesn’t have a lot of hobbies, but she loves to read James Patterson books; she has read everything he has written. She also enjoys watching television series that have a police/FBI, hospital/medical, fire department, law/order, building/renovation, baking, and every 90 Day themed programs.

***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.

Over 38.3 million people with disabilities voted in the 2020 elections, so many people think that disability issues should be a priority to any candidate who wants to win their election. The three policy issues uniquely, though not exclusively affecting people with disabilities are public health, home and community-based services, and disability benefits and work.

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A new cafe in Racine gives people with disabilities a opportunity to use their skills. The cafe employees work on following multi-step directions and practicing their executive functioning skills which include: critical thinking, planning, time and resource management, and organization among others.The cafe makes people with disabilities feel valued.

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Voters with disabilities continue to advocate for better voting accessibility. Many polling places still aren't fully accessible and absentee voting has become more challenging in recent years.. The outlawing of drop boxes last year made it harder for people to return their ballot. Another issue is training poll workers on the accessible voting machine. Advocates continue to raise these issues with legislators.

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The US Department of Labor recently released a new resource in hopes of increasing integrated employment opportunities for people who have disabilities. The Competitive Integrated Employment Transformation Hub collects resources from the federal government to provide practical guidance, policy information and evidence-based best practices for people with disabilities, their families, employment service providers, and state agencies. 

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Hundreds of disability advocates gathered in Madison for Disability Advocacy Day in mid March. Before marching to the Capitol, advocates gathered at Monona Terrace for a briefing and to fine tune their messages. People talked with their legislators about everything from living safely in their own homes to, to transportation, to the direct care crisis . According to the CDC, 23% of adults in Wisconsin have a disability. Advocates spoke about what people with disabilities and their families need!

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Input Opportunity: Ensuring Wheelchair Users Can Fly With Dignity 

Comments due Monday, May 13, 2024

The U.S. Department of Transportation (DOT) is seeking public comments on a new proposed rule designed to ensure airline passengers who use wheelchairs can travel safely and with dignity. 

An estimated 5.5 million Americans use a wheelchair, and many encounter barriers when it comes to air travel. In 2023, 11,527 wheelchairs and scooters were mishandled by carriers required to report data to DOT. 

The proposed rule would set new standards for prompt, safe, and dignified assistance; require enhanced training for airline employees and contractors who physically assist passengers with disabilities and handle passengers’ wheelchairs; and specify actions that airlines must take to protect passengers when a wheelchair is damaged during transport.

Notably, the proposed rule would require airlines to provide passengers with two options to repair or replace their wheelchairs if mishandled by the airline. The two options are:

• The carrier handles the repair or replacement of the wheelchair with one that has equivalent or greater function and safety within a reasonable timeframe and pays the associated cost.
• The passenger arranges the repair or replacement of the wheelchair with one that has equivalent or greater function and safety through their preferred vendor and the airline pays the associated costs. 

In addition, the proposed rule would make it easier for DOT to hold airlines accountable when they damage or delay the return of a wheelchair to its owner by making it an automatic violation of the Air Carrier Access Act to mishandle wheelchairs. 

As part of the Notice of Proposed Rulemaking, DOT is also requesting input on two topics not currently included in the proposal: lavatory size on twin-aisle aircrafts and reimbursement of the fare difference between a flight someone could've taken if their wheelchair fit in the aircraft and the more expensive flight they had to take instead.

Comments can be submitted online, by mail or fax, or hand-delivered through Monday, May 13, 2024.

The proposed rule was announced at a White House convening on protecting the safety, rights, and dignity of air travelers with disabilities.

Read DOT’s press release for a summary of key provisions.

Attn: All Regulated Health Care Providers

Call for Presenters! 2024 FOCUS Conference.

We’re now accepting online proposals for 75-minute breakout sessions.  

FOCUS 2024 is being held at the KI Center in Green Bay on November 20 and 21, 2024. FOCUS brings together provider associations, health care providers, and Division of Quality Assurance staff to provide better care and service for Wisconsin elders and those with disabilities. FOCUS is a unique opportunity to teach, learn, and collaborate.

The conference serves:

• Aging and Disability Resource Centers
• Assisted Living Facilities
• Division of Quality Assurance
• Facilities Serving Individuals with Intellectual Disabilities
• Nursing Homes

We look for proposals that apply to a variety of provider types.

The conference is intended to be applicable to administrators, case/discharge managers, caregivers, dietitians/dietetic technicians, medical directors, nurses, pharmacists, quality improvement managers, risk managers, social workers, and therapists.

Please complete the Online Proposal Form by May 1, 2024. The FOCUS 2024 planning committee will review all proposals and notify selected presenters by June 1, 2024.

Contact the FOCUS Committee for more information.

Funding Opportunity: RERC on Technology for People Who Are Deaf or Hard of Hearing