ALBANY, N.Y. -- Advocates for people with disabilities in New York are pushing for the federal budget resolution to include $400 billion in Medicaid funding for home- and community-based services across the U.S. as part of the Better Care Better Jobs Act.

Heidi Siegfried, director of health policy at the Center for Independence of the Disabled New York (CIDNY), said the majority of people in the U.S. would prefer to get long-term care services at home. However, she pointed out in New York and across the country, the field has been drastically underfunded for a long time, and argued incorporating the Better Care Better Jobs Act would lead to better pay and health benefits and address the workforce shortage.

"To put $400 billion in Medicaid that will be targeted specifically to home- and community-based services, this would be a start to helping people with disabilities get the care they need, to stay out of nursing facilities, which have now been shown to be a deathtrap during the pandemic," Siegfried asserted.

The American Rescue Plan gives New York $2.1 billion in increased federal matching funds for Medicaid, but it only lasts one year.

Siegfried noted CIDNY would like to see better oversight and more transparency of the home and community care system, and be involved with creating the care systems themselves.

She added some long-term care companies often fail to authorize the number of hours of care that are necessary for people receiving services to live safely in their own homes. CIDNY workers helping individuals transition to home care report more people are being hospitalized as a result.

"We want people to be able to live independent and meaningful lives in the community," Siegfried explained. "And it's dependent on having adequate home care to be able to do that."

The budget resolution doesn't require a bipartisan agreement, and can pass through the U.S. Senate by a majority of 50 votes, with the vice president's vote to break a tie.

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.

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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Advocates for individuals with disabilities want the state of Nevada to further embrace what is known as the "independent living" model.

Dawn Lyons, executive director of the Nevada Statewide Independent Living Council, said the philosophy is centered around people with disabilities being their own experts on their needs and the services they require. Lyons acknowledged within the state's disability community, there exists what she called "inter-conflict," leading to a lack of a unified voice and sending mixed signals to policymakers.

"Even though we have these other voices interfering, saying different things, what it comes down to is 'We don't need to fight each other,'" Lyons emphasized. "I think the reason why we end up with that inter-conflict is because we've been put down so often and we've been told that we don't matter."

Lyons has been with the council for the last eight years and pointed out progress has been made but more needs to be done. She argued education related to independent living is key to moving the needle and the council supports developing educational materials as well as consulting with a state currently employing an effective independent living approach. Lyons explained one of those states could be Colorado, which she adds even has its own independent living agency.

John Rosenlund, program director for the Nevada Assistive Technology Collaborative, said independent living boils down to empowerment. He said he recognizes the state cannot move forward with implementing a philosophy if there are those who do not agree with it or are comfortable with the status quo.

Rosenlund contends centers for independent living across the state have strayed from independent living values such as peer support, individual and systems advocacy and independent living skills training.

"Things aren't right, they've lost the meaning of what independent living is, perhaps," Rosenlund suggested. "Or they're too focused on certain things so that stability at centers for independent living is, in my mind, instrumental."

Rosenlund added the lack of awareness and adoption of independent living's core values is having real effects across the state, with some missing out on real opportunities to enhance their lives. He reminded people without any change or challenge, there will not be any growth.