NEW YORK – As the U.S. Senate takes up its health care bill again this week, advocates for people with disabilities are concerned that cuts to Medicaid could limit benefits that provide critical care.

The Republican Party’s plan unveiled before the July 4 recess would cut Medicaid funds to New York by $7 billion over four years.

According to Heidi Siegfried, director of health policy at Center for Independence of the Disabled, New York, that could force the state to consider cutting benefits and services that Medicaid refers to as "optional."

"Rehab – like physical therapy, occupational and speech therapy – that is one New York cut five or six years ago,” she points out. “Prosthetic devices, durable medical equipment, like wheelchairs."

Though the number of Republican senators saying they won't support the GOP bill has grown, Siegfried fears the alternative that will emerge is likely to include deep cuts to Medicaid as well.

Services that make independent living possible also could be cut. Currently, Medicaid requires states to cover nursing home care, which Siegfried notes is very expensive and often contributes to declines in patient health.

"Services to keep people from going into a nursing home – like personal care aides and the services that you would need to continue to live in your own home – those are optional," she points out.

Siegfried explains that "mandatory" and "optional" are statutory terms that don't reflect medical necessity, but may influence decision-making.

Polling shows a majority of Republicans think of Medicaid as a "welfare program" rather than a health insurance program.

But Siegfried points out that Medicaid covers children as well as adults, and is especially critical for older New Yorkers and those with disabilities.

"We have to get people to understand that this is not just a program that serves low-income people, that it serves middle class people that have high needs," she stresses.





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In an appeal to the public as Hurricane Ian barreled toward Florida, an advocate for persons with disabilities urged everyone to consider checking in with neighbors, friends or family members who may benefit from a helping hand.

Mandy Bianchi, executive director of the group Ability1st, wrote a column in the Tallahassee Democrat published the morning before the then-Category 4 storm made landfall in Southwest Florida, explaining those who are vulnerable have a lot more to consider during hurricane preparedness, including obstacles such as getting emergency notification and transportation; evacuation; sheltering; access to medications, refrigeration, and backup power.

"For people who need oxygen or a CPAP machine or anything along those lines, if we lose power that is really a frightening situation for people who rely on those type of devices," Bianchi pointed out.

According to the Centers for Disease Control and Prevention, 1 in 4 adults in Florida has a disability, which is more than 4.5 million people.

Bianchi stressed it is important to think before, during and after the storm about any person who might be in need of help, and to check on them. She added if you are scared of what could happen during a storm, they might be even more so, and every little bit counts.

Bianchi's organization works across six Florida counties and provides services to people who are homeless. She is also shedding light on being available to assist those with mental-health needs.

"For people who have mental-health concerns, just knowing that somebody is nearby or can call and check on them, it's just a comforting feeling to know that they are not going to be forgotten about or left behind," Bianchi advised.

Almost immediately after Hurricane Katrina devastated the Gulf Coast in 2005, the National Council on Disability estimated there were roughly 155,000 people with disabilities over the age of 5, or about 25 % of the cities' populations, living in the three cities hardest hit by the hurricane.

Federal agencies such as FEMA, as well as Florida's Division of Emergency Management, provides guidelines on the best ways to plan and support those with disabilities.

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.

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.