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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In Michigan and across the country, nearly 25% of the population encounters challenges in voting and accessing the polls.
The Carter Center and Detroit Disability Power audited 261 polling locations in metro Detroit last election, and found just 16% of them fully accessible.
Dessa Cosma, executive director of the group Detroit Disability Power, said many polling locations do not have accessible parking, a ramp, clear signage, accessible doors or a direct travel path even just to enter the building. Once inside there are further challenges.
"No wheelchair-height voting booth or no functional voter access terminal which is the accessible voting machine that is required by law to be available and usable at all poling locations in the country," Cosma pointed out.
Cosma noted people with disabilities need to be able to engage in democracy. One of the first steps to being able to help them participate is to make sure they can get to a polling place and vote.
Accessibility challenges lead to stories about voters going to the polls and having to turn back because either they could not get in or could not access a ballot. Groups advocating for accessible voting want to spread awareness about how detrimental lack of access is to communities.
Cosma acknowledged the policies are clear voting locations meet the needs of all voters, but enforcing those rules is equally important.
"That is where clerks and other election officials really come in because it's their responsibility to make sure that all the polling locations are meeting the requirements of the law," Cosma asserted. "We're here to help them implement the best practices for making sure their polling locations are accessible and that many of the things that they need to do are not that hard and are certainly not that expensive."
Cosma added simple changes like clearly marked accessible parking, ensuring the accessible door to the building is unlocked even if it's not the primary entrance, making sure every precinct has a wheelchair height voting booth, and all accessible voting machines are maintained, plugged in and turned on.
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A recent report finds only around 31% of New York City public schools are disability accessible.
The report, from Advocates for Children of New York, finds districts with a majority of schools not compliant with the Americans with Disabilities Act are in Brooklyn, Queens and The Bronx.
Sarah Part - senior policy analyst with Advocates for Children of New York - said the group is looking for the DOE to invest $1.25 Billion in accessibility upgrades during their next capital plan.
But, she noted that the money will only go so far.
"So, it'll take some of those buildings to full accessibility or to a much higher level of partial accessibility," said Part. "They might not be perfect, as far as ADA compliance, but there'll be a legitimate educational option for a student who has a typical disability or a teacher or a staff member who uses a wheelchair and wants to work there."
In the 2020-2024 capital plan, the city dedicated $750 million for these upgrades. Once that funding ends in 2024, more than one-third of schools will be fully accessible - with only one district having half of all schools accessible.
This proposed funding will help bring an estimated 150 to 200 buildings into complete accessibility by 2029.
While this might be somewhat expensive, Part said this money will make up for the lack of investment taken after the passage of the ADA. She describes other challenges which could come up.
"I know with widespread inflation and construction costs have been rising," said Part. "That makes it more difficult for the school construction authorities to do such projects. Some buildings are quite old, and it's also just like the city's school system is so massive and sprawling, the scale of the problem is just really huge."
Part said she is glad about the progress that's been made already, noting there's still a lot of work that needs to be done.
She said she hopes to see all these school upgrades done in time for the 40th anniversary of the ADA in 2030.
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In Missouri and around the country, people with disabilities are living in institutions who could successfully live in the community with the right support. According to the 1990 Americans with Disabilities Act, they may even be victims of discrimination.
Attorney M. Geron Gadd, senior attorney, National Health Law Program, said the U.S. Department of Health and Human Services "revitalizing" enforcement of the ADA and the Olmstead decision shows people are still experiencing this type of discrimination, and they have the right to seek legal recourse.
"For people with a range of disabilities, there is a legal mechanism under federal law that entitles them to be served in their homes and in other community-based settings, rather than essentially being locked away in institutions," Gadd said.
The Supreme Court's 1999 Olmstead decision affirmed the ADA requires people with disabilities to be served in the most integrated setting appropriate for them. The individual, a family member or another concerned person may file a discrimination claim. Gadd pointed out that every state is required to have an advocacy organization to provide legal assistance for people with disabilities. In Missouri, it is the Missouri Protection and Advocacy Services.
Gadd added another important consequence of the Olmstead decision is the clarification that a person does not have to already be institutionalized to file a discrimination claim.
"If you're at risk of an unnecessary institutionalization, then you can take action under the ADA to obtain the services in the most integrated setting appropriate to your needs," Gadd continued.
And she stressed that states claiming they cannot afford community-based services doesn't exempt them from this requirement under the ADA.
When Missourian Diana Willard was young, some told her parents she should be institutionalized when she tested as developmentally disabled. Instead, her family helped her thrive. Willard became a certified nursing assistant, worked full-time for years and served on the Missouri Developmental Disabilities Council. She encouraged parents of children with developmental and intellectual disabilities to not hold them back.
"People with developmental disabilities have the right to live a life to the fullest extent that they can. As they grow up, they need to be allowed to transition into adulthood," Willard said.
Discrimination claims can also be filed with the Office for Civil Rights at the U.S. Department of Health and Human Services.
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