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.

Connecticut disability rights advocates are concerned about state and federal barriers to employment.

At the state level, Medicaid is the only health care plan covering necessary care some people with disabilities might need. Beyond that, they could face high out-of-pocket costs.

Jonathan Sigworth, president and CEO of the nonprofit More Than Walking, feels states can reform their Medicaid buy-in programs. Connecticut's buy-in program has a $10,000 asset limit, which he said restricts a disabled person's ability to work.

"The system is currently set up so that if you have the health care you need, the policies prevent you from working," Sigworth pointed out. "You'd have to choose between the two, essentially, in some cases. Those policies are really detrimental."

Having a job could force someone over what advocates call the "benefits cliff," when a person gets a raise, has a kid with a part-time job, or some other income increase, which then makes them ineligible for certain benefits. Connecticut's General Assembly considered several bills during its last session to alter programs with benefits cliffs, though none were passed.

Beyond state policies, the upcoming election is also concerning for Sigworth. He's troubled by Project 2025, a policy outline for former President Donald Trump's possible second term. It calls for removing the Equal Employment Opportunity Commission's consent decree power in instances of employment discrimination.

Sigworth noted it would terminate a key way for people with disabilities to fight workplace discrimination.

"There's one party, one argument in this country that talks about cutting regulations and in the same breath saying we should protect people with disabilities," Sigworth contended. "It's using the disabled community as a token audience."

Though Trump disavowed Project 2025, some disability rights advocates remain uncertain since he repeatedly tried to repeal the Affordable Care Act. Project 2025 also calls for federal spending cuts to programs like the Equity in IDEA program, which encompasses all policies ensuring fair treatment and access for students with disabilities.


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New York disability rights advocates are voicing concerns about changes to what's known as the Consumer Directed Personal Assistance Program.

On October 1, New York State will contract with a single provider for the program.

CDPAP provides services for people who are chronically ill or have physical limitations and who need help with daily life. Gov. Kathy Hochul says the reason for the change is to cut high Medicaid costs.

But Sharon McLennon-Wier, Ph.D - executive director of the Center for Independence of the Disabled New York - predicted the move will have resounding impacts.

"Anyone with a disability that has this program could lose their home healthcare assistance - either from maybe neighbors or friends, or even family members," said McLennon-Wier, "and we already know that there's a home health-aide shortage all over the country."

Gov. Hochul noted the program has been subject to mismanagement, but critics say she didn't consult its leaders.

Several agencies supporting the idea of keeping CDPAP local have been cited by the New York State Comptroller for wage theft. But the provider set to take it over isn't much better.

Public Partnerships LLC had contracts terminated in five other states, and was subject to class-action lawsuits over home-care workers' pay in Pennsylvania.

Feedback from New Yorkers with disabilities has mostly been questions about CDPAP's future.

McLennon-Wier said she is among those waiting to see what happens next - as she said they've received little guidance from the governor's office.

She added that it can be frightening to possibly lose much-needed care.

"I think anyone who has to depend on someone for that day-to-day care," said McLennon-Wier, "to have to worry - especially if they live alone - is really something that, mentally, that a person in this situation shouldn't have to deal with."

A bill has been introduced in the New York State Legislature to curb these changes. If it passes, it would require any CDPAP provider to be licensed by the State Department of Health starting in 2026.

Currently, providers can operate without formal licensure.

Big Tex is up and the Ferris wheel is spinning at the 138th State Fair of Texas. And again, this year the Fair is making special accommodations for anyone who might be sensitive to the bright lights and loud sounds.

For the sixth year, the Fair is offering Sensory Friendly Mornings every Wednesday from 10 a.m. to 1:30 p.m. Taylor Pulfer, the fair's director of communications, said the program makes the event accessible for everyone.

"We turn down all of the flashy blinky lights, we turn down all of the sounds, you won't hear music throughout the grounds, even Big Tex's voice is lowered," Pulfer said, "and so it gives individuals who might struggle with sensory sensitivities an easier experience. "

The Fair has also created a special guided itinerary with a list of activities and exhibits that are easy on the eyes and ears. More information is available at BigTex.com/Sensory.

Around 2.3 million people attended the Fair during its 24-day run last year. The fairgrounds are open to the public on Sensory Friendly Mornings, but Pulfer said the Midway will be designated as a "quiet zone" during the special hours.

"We still can't take away all of the sounds that might be occurring out on the grounds, and we understand that there might be a situation where maybe you have a four-year-old child who has autism and he's just having a meltdown, and you need to step away," Pulfer said. "That's that place that we've created for you to take your child and be able to have a second to depressurize."

She said a restroom made specifically to accommodate people with disabilities will also be available on Wednesday mornings.

"That might need that extra changing space to assist, maybe, an adult with a disability," Pulfer said. "Think of all the sounds that come from a bathroom. You have your hand dryers, all of the flushing, all of the sinks, and so sometimes getting - like a child with autism - into a bathroom, that itself can cause the meltdown. "

The Fair runs through Oct. 20.


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