Advocates for people with disabilities are urging the Massachusetts General Court to pass what is known as the Wheelchair Warranty bill, to improve the repair process for those who rely on wheelchairs.
Two large corporations provide most of the country's wheelchairs, and groups say the lack of competition leads to longer wait times for repairs. The bill would shorten the time manufacturers have to assess faulty chairs and offer loaners, and require them to keep adequate parts on hand.
Rich Levasseur, a power-chair user in Tewksbury, said people in wheelchairs often need to constantly reposition themselves so as not to exacerbate medical conditions.
"Long repair times mean worsening health conditions," Levasseur explained. "In my case, I can develop sores which can become infected and become pressure wounds."
The bill would extend the minimum warranty period to two years, and include what is called a "reasonable right to repair," meaning wheelchair users can attempt to make fixes themselves without voiding the warranty. Levasseur pointed to a time when a loose battery cable was causing his chair to start and stop intermittently, and said he could not have waited for the manufacturer.
Ellen Leigh, a power wheelchair user in Arlington, said it is not a recent supply chain issue. She pointed out whenever she has needed repairs -- from replacing tires to motors -- it has always taken months and included delays and mistakes. She pointed to simple repairs, such as replacing a bolt which fell out of her headrest. It took about three months to fix.
"In the meantime, I could not use this head/neck cushion," Leigh recounted. "This lack of support caused increased pain and fatigue. This wastes time and resources, and most importantly, leaves someone like me with a faulty or inoperable and potentially dangerous wheelchair."
Sen. John Cronin, D-Worcester, a sponsor of the bill, said it aims to level the playing field between wheelchair users and the companies controlling the supply: Numotion and National Seating and Mobility.
"It's important that our elected representatives hear the voices of people who have been overlooked and marginalized," Cronin contended. "That includes consumers who have little or no bargaining power or choice."
With only about a month left in the legislative session, advocates stressed the General Court needs to start advancing the bill. It is in the Senate Ways and Means Committee.
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Thirteen students, ranging in age from 14 to 21, have just graduated from the Iowa Developmental Disabilities Council Youth Leadership Academy.
The program's goal is to develop young leaders who learn skills that build their confidence.
A dozen students from Iowa welcomed one from Illinois who is attending school in Iowa. Together, they learned during the weeklong academy how to be more effective advocates for their communities.
That's exactly what 21-year-old Andrew Allen, who has been diagnosed with ADHD, autism and severe separation anxiety, was looking for when he applied.
"I got bullied a lot," said Allen. "When I was in school, I got pushed aside a lot and I thought, 'Enough is enough.' They taught me how to communicate, have conversation with special needs, and help our community."
The annual academy teaches students ways to advocate for themselves, become more civically engaged and to be of service in their communities.
19-year-old University of Iowa student Jackie Corless, who said she has an intellectual learning
disability, also took part in the Youth Leadership Academy.
She said the topics ranged from advocacy to communicating, and lots of useful skills in between.
"Leadership skills," said Corless. "I learned about networking, setting goals - you know, the difference between how to be an advocate and how to better strengthen your advocate goal. How networking really works within the disability world."
The Youth Leadership Academy is a partnership between the Iowa Developmental Disabilities Council, Disability Rights Iowa, ASK Resource Center, the University of Iowa Center for Excellence in Developmental Disabilities, and Access to Independence.
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New York disability-rights advocates are celebrating the 34th anniversary of the passage of the Americans with Disabilities Act.
The 1990 legislation prohibits discrimination against people with physical or mental disabilities. Along with becoming a standard part of employment law, it bolsters accessibility in the public environment.
As seminal as the ADA is, said Dr. Sharon McLennon Wier, executive director of the Center for Independence of the Disabled New York, more work must be done to achieve true accessibility.
"Even though ADA has been around for many, many years," she said, "there is still ignorance regarding what is true accessibility and how new construction at times can still be put up without following the principles of ADA universal access."
Downstate New York's transportation systems lack ADA compliance. Only 31% of New York City's Subway system is accessible to people with disabilities. Funding has been allocated to make the system 95% compliant. The work would have been done by 2055, but since Gov. Kathy Hochul paused congestion pricing, these plans have been put on hold indefinitely.
A New York City Comptroller report finds only 40% of the city's disabled population is employed. Statewide reports show post-pandemic employment for people with disabilities is recovering much slower than the nation.
To change this, said McLennon Wier, classroom instructional materials need to be more accessible, "having more raised line drawings, having more Braille available, having more assistive technology that can read various types of charts and diagrams."
She said she thinks certain industries are siloed, but once they open up to better comprehend universal accessibility, more people with disabilities will join them. One place this can work is in STEM fields, as only 3% of that workforce includes people with disabilities.
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July is Disability Pride Month, and today is the 34th anniversary of the signing of the Americans with Disabilities Act.
Federal data show that more than 42 million Americans have a disability affecting their cognition, mobility, hearing, vision or ability to provide self-care or live independently.
"Studies over and over demonstrate that people with disabilities are a very solid
part of our workforce," said Joe Xavier, director of the California Department of Rehabilitation, which helps people with disabilities thrive at work. "They stay in their jobs, they're committed to the work that they do, and so there's much less turnover with people with disabilities, thereby reducing the cost and all the work associated with that."
Advocates have said companies are responsible for providing accommodation in the same way they provide chairs and technology for all their workers. They encourage companies to follow principles of universal design when building new spaces, so access is not an afterthought.
Britanny Comegna, a member of the State Rehabilitation Council, runs a company called Deaf and Disability Mediation Services and said people shouldn't be shy about direct communication with disabled people.
"When you meet a new disabled person," she said, "you have to ask, 'How do you want to identify? What do you need? And what can I learn from you?' Ask those questions because we really do appreciate that you're making that effort to connect with me and understand me as a person."
The Centers for Disease Control and Prevention is working to reduce health disparities among adults with disabilities, who have higher rates of smoking, obesity, heart disease and diabetes.
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