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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Rural Nevada is facing a housing and transportation crisis. Advocates for those with disabilities say things are getting out of hand.
Dee Dee Foremaster, director of the Rural Center for Independent Living, said there is not enough available low-income housing, and added the units that are available to folks on the Housing Choice Voucher program, formerly called Section Eight, is "substandard."
She added the average Nevadan on Social Security receives almost $1,000 a month. But the average Nevadan can expect to pay around $1,400 a month in rent.
"People are having to double up to be able to make their rent. And it makes it difficult because a lot of times some people with disabilities really would prefer to live by themselves," she said.
Foremaster added she is among those who feel like the calls they are making for housing reform are falling on deaf ears. And while local leaders are eyeing federal lands as part of the solution to address the housing shortage, Foremaster said she has solutions that are more immediate, including creating a program for landlords to receive tax incentives for allocating units to low-income Nevadans.
She stressed that even in rural Nevada, the housing supply isn't able to keep up with demand, and said easing restrictions on accessory dwelling units would help everyone.
"So that people have an array of plans to be able to draw from that are approved, so that they don't have to go through the building commission and hoops that we all have to jump through every time we want to build something on a property," she explained.
Margaret Marcucci, with the Elko support staff of the Rural Center for Independent Living, said a lack of transportation is another issue impacting people's daily lives.
"I won't tell you how many times I get calls from friends, going 'I'm stuck, can you come get me?' or 'Can you take me to an appointment?' said Marcucci. "A lot of our seniors and a lot of disabled do not go to the doctor because they can't get there."
Last year, a free ride-share program launched in rural Nevada to help remove barriers to access medical care. But Marcucci is calling for a more diversified and flexible fleet of services that can get folks to where they need to go.
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Maryland is facing a $3 billion budget deficit, and planned cuts in 2026 would include millions in disability assistance. But one advocate says those cuts would threaten lives.
More than 20,000 Marylanders with disabilities receive state support to help their families afford caregiver services. More than 3,500 families use self-directed services, which give families the ability to set up caregiving separately from traditional programs.
Those services in the proposed budget will face cuts, which advocates say would drive caregivers out of the system to better-paying opportunities.
Montgomery County resident Hamza Khan, a disability rights advocate, has two siblings with special needs. He said funding issues stem from the state overextending itself while getting federal COVID-19 assistance.
"As the pandemic wound down, the state also received one-time federal injections of cash into our budget," Khan said. "And it appears that the governor built those into long-term injections of cash - that he built those structurally into the budget, rather than counting for them to be one time."
Gov. Wes Moore's supplemental budget avoided steep cuts through the rest of 2025, but did not address more than $400 million in cuts for next year.
Khan pointed out these cuts to disability assistance come as the state has added 5,000 employees to its payroll. Khan said these proposed budget reductions would run counter to current laws that require more community input - and give Maryland families the right to choose their care.
"Given the fact that 18,000 people are going to suffer extraordinary pain, and some of them might very well die, he should prioritize funding that prior arrangement first," Khan added. "It's been guaranteed under Maryland law for many years, and it's been expected that costs would rise, but they haven't risen so extraordinarily that the budget can't cover for that."
State salaries, wages and benefits are projected to cost Marylanders $12.2 billion in 2025.
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Tennessee's Disability Day on the Hill is an opportunity for people living with a disability to unite, and engage in the legislative process.
The Centers for Disease Control and Prevention reports nearly 1.6 million Tennesseeans have a disability.
Carrie Carlson, director of community engagement with the Tennessee Disability Coalition, said people are encouraged to meet them for the Disability Day on the Hill in Nashville.
The event focuses on issues and challenge policies that threaten protections under the Americans with Disabilities Act.
"Disability Day on the Hill is a day where hundreds of people with disabilities will come to Nashville, to Cordell Hull, and get involved in the legislative process," said Carlson, "meaning having meetings with their Senate and House of Representatives."
She said Tennesseans with disabilities face unequal access to education, housing, transportation, and health care.
The theme for Wednesday's event is Liberty Not Limits, which means having a disability should not limit your liberty to live the life of your choosing.
Carlson said Tennesseans are encouraged to light up and wear "coalition blue," and post to social media in support of Disability Advocacy Day.
She added that this will be the fifth year recognizing March 11 as Disability Advocacy Day, with an annual proclamation that highlights the strength of advocacy efforts.
"Disability Advocacy Day," said Carlson, "is a day where specific landmarks across the state of Tennessee in each region West, middle and East go blue to show the amazing accomplishments and advocacy efforts of Tennesseans with disabilities."
Carlson said Disability Advocacy Day began with key landmarks in Tennessee lighting up blue to raise awareness, and chosen to address transportation barriers.
Now, it has expanded as communities participate in their own ways - lighting homes, wearing blue, and gathering for photos to show support for local advocacy work.
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