DENVER -- As infrastructure legislation makes its way through Congress, advocates for people with disabilities are urging lawmakers to boost investments for in-home care programs that would allow more people to avoid placement in nursing homes.
Christiano Sosa, executive director for Arc of Colorado, said the Better Care Better Jobs Act would dramatically improve quality of life for people with disabilities.
Sosa pointed out the proposal would raise wages for caregivers, and provide benefits including paid family leave, which will help make direct care work a viable career path and reduce turnover.
"One of the things that we hear loud and clear from individuals with disabilities and families is that it's almost a full-time job just training the new person," Sosa observed.
Caregiver reimbursements have not kept up with inflation or even local minimum wages, and Sosa sees the proposed $400 billion investment in Medicaid Home and Community-Based Services as an important step to reverse decades of underfunding.
Congress has remained divided along party lines over so-called human infrastructure investments. Republicans say the price tag is too high, and worry it would lead to bigger government.
Lack of funding has led to long waiting lists for rationed in-home care services, which leaves many no choice but to turn to nursing homes.
Henry Claypool, policy director for the Community Living Policy Center at Brandeis University, said blocking the proposal would be penny-wise but pound-foolish. States are required to accept nursing-home residents regardless of their ability to pay, which costs taxpayers exponentially more than community-based care.
Claypool believes the proposal is ultimately about giving people more options.
"If you're in an institution like a nursing home, you're not able to get up and go when you want, you're totally dependent on when the staff can get to you," Claypool explained. "Most Americans really want to stay in their homes, and this is an important investment to make that happen."
Sosa noted if Congress does not invest in community-care options, the burden will continue to fall on unpaid family caregivers, which historically have been women and people of color. Sosa added the legislation should also boost recovery from the pandemic's economic fallout by providing good jobs for direct-care workers, and allowing family caregivers to rejoin the workforce.
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Nearly a dozen Iowa youths with disabilities are taking newly developed leadership skills out into the world. A summer academy wrapped up this month, and organizers say this year's class displayed impressive strength in self-advocacy.
The Youth Leadership Academy just saw the graduation of its third class and was able to hold closing ceremonies in-person for the first time after COVID disrupted the previous events.
In interactive sessions, students from ages 14-21 learn about things like goal-setting and civic engagement.
Francine Pace, a college student who was diagnosed with autism at a young age, said she liked the networking training.
"You want them to hear your side, and it's great to hear other people's side and combine and making teamwork happen," Pace explained. "You can overcome a lot of things."
Pace feels the program is a great approach in trying to enact change at the community and state level. She will keep pushing for policies to reduce the state's waiting list for those with disabilities seeking home- and community-based services.
Event organizers say this summer's students already had a range of advocacy experience, which allowed them to bolster the curriculum.
Sebastien Janelle, another college student and academy graduate, said the program helped him focus on personal goals as he looks ahead to his future while living with autism.
"If I want to buy a house someday or, like, if I want to get there, then it is a huge priority to live up with that moment to reach that goal," Janelle emphasized.
The Iowa Developmental Disabilities Council helps lead the academy, along with several partners, including the Center for Disabilities and Development, ASK Resources, the state Department of Human Rights and Access to Independence.
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The New York City Council is considering asking the Department of Transportation and the Department of Parks and Recreation to develop a report outlining the best locations for public restrooms in every ZIP code in the city.
Currently, New Yorkers can either use public restrooms in the parks or one of the city's newly installed automatic public toilets.
The new report would specifically address accessibility for people living with a disability.
Sharon McLennon-Wier, executive director of the Center for Independence of the Disabled-New York, described one of the biggest issues with the new automatic toilet facilities.
"If someone is using a motorized wheelchair -- and also, they may themselves weigh a certain amount -- they may not be able to access the public restrooms due to the construction of the flooring," McLennon-Wier pointed out. "Which has a weight limit of, I believe, 700 pounds."
She noted another concern is the time limit on the automatic public toilets. The door remains locked for 12 minutes, which might not be enough time for someone with mobility issues. Some solutions would be to extend the time limit and make the structures more permanent, so the floors are better reinforced.
Public restrooms in parks were recently found to be lacking in New York for people with disabilities. According to a 2019 report from the City Comptroller, 69%, or almost 1,000 of the city's 1,428 park restrooms, do not comply with the Americans with Disabilities Act.
McLennon-Wier hopes additional facilities will provide a wider range of options.
"With disabled folks having to take Access-A-Ride, and having to worry about wait times and their transportation not being readily available, they have to sit and wonder about if they're going to make it to the bathroom," she observed.
McLennon-Wier added that better access to public restrooms would be a benefit to all New Yorkers. She explained many people find themselves having to carefully consider when or where they can eat or drink because they might not have a restroom nearby.
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New York City's subway system has often been a thorn in the side of the disabled community, because only 114 of the system's 472 stations, or 24%, are disability accessible.
It is slated to change as part of a class-action settlement. The Metropolitan Transportation Authority (MTA) said, as part of its next round of capital improvements, all remaining subway stations will be made accessible for people with disabilities.
Jeff Peters, director of communications at the Center for Independence of the Disabled in New York, feels it is a major step forward, despite the lengthy timeline.
"The fact that it is a long time frame is not the greatest thing in the world," Peters acknowledged. "Of course, we'd all love to see this be done in a faster manner. But this is now the first time that they've actually mandated that there is a date, and there is money set aside for this."
The MTA is aiming for 81 stations to be made accessible by 2025, with improvements to a second round of 85 stations 10 years after. In the two decades afterward, 180 stations will be made accessible by 2055.
According to the New York City Department of Health, more than more than three million people in the city live with a disability.
Peters believes it should not signal the end of disability-access improvements for mass transit, rather, it is a new beginning with plenty of work ahead. He added the changes to be made do not start with construction plans, but with better education about what 'disability access' means.
"When we educate people about what needs to be done, they understand a little bit more," Peters explained. "Sometimes we'll hear, 'I never thought of it like that.' Or, 'I didn't see it this way, thanks for bringing it to my attention.' Sometimes, people just need to see how things will affect other people."
Greater awareness can help elected officials and everyday citizens comprehend the necessity of elevator and escalator access at subway platforms, and for functioning tactile strips to alert blind people of their location on a station's platform. Peters emphasized once others know this, it will underscore the importance of these improvements.
Disclosure: The Center for Independence of the Disabled-New York contributes to our fund for reporting on Disabilities. If you would like to help support news in the public interest,
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