Disability community still fighting for independent living
Philipe Rivera goes by "Flip." He's 34 years old and has cerebral palsy. He has a tattoo on his arm, uses a wheelchair, and communicates through a device called a DynaVox.
"I also use a head pointer for my personal PC," Rivera said. "I cannot use my hands. I rely on people to help me with getting dressed, feeding, bathing, etc."
He's been at Monroe Community Hospital since he was 20. Before that, he lived with his mom who was struggling with substance abuse. She couldn't care for him, so he was placed in the nursing facility owned by Monroe County. He said it's never felt like a home. For 10 years, he's been trying to get out.
Here's something you may not know: People with disabilities are not guaranteed the right to live in the community.
More than 1.4 million people with disabilities lived in nursing facilities between 2014 and 2018, according to the U.S. Census Bureau; about 40.6 million people with disabilities do not live in institutions.
Kelly Buckland, executive director of the National Council on Independent Living, said there are two main hurdles that people have to clear to get out of an institutional setting. The first is housing.
"I mean, in order to get out, you have to have some place to go," said Buckland. "And so that's one barrier that a lot of people run into."
Buckland said the other is support like home aides. There is a shortage of aides, he said, as the jobs are low-paying and have a high turnover rate.
But the fight for independent living for people with disabilities is far from over. Bruce Darling, co-founder and CEO of the Center for Disability Rights, worked as part of a coalition that helped craft the Disability Integration Act.
Darling, as a member of the national grassroots organization for disability rights ADAPT, worked with U.S. Sen. Chuck Schumer on the bill that would recognize independent living for those with disabilities, and ensure states couldn't force anyone to be institutionalized.
"We flipped it around and said essentially that if people are forced to go to a congregate setting to get their needs met, that they're denied an independent life," said Darling.
But there's been no action on the bill. It's stalled in the Senate's Health, Education, Labor, and Pensions Committee.
Buckland feels that addressing a fundamental right to live independently is key, especially during this pandemic.
"The safest place you can be is in your own home," he said. "I mean you can see that just by statistics. Look at how many people in congregate settings have died."
According to the American Civil Liberties Union, almost half of all COVID-19 deaths in the U.S. were people in congregate settings, despite making up less than 1 percent of the population.
However, that data is still incomplete. The ACLU states that the U.S. Department of Health and Human Services only requires that nursing homes report coronavirus-related deaths and infections from May 8 onward, which means there is incomplete data for March and April.
Schumer's office said that getting into and out of an institution are usually decisions made between a guardian and providers who manage a person's care plan. For Flip Rivera, part of his challenge was proving to a judge that he didn't need a guardian.
"I had to hire a lawyer, go to court and write a letter to prove that I could make important decisions for myself without a guardian," said Rivera.
He's gotten help from the Center for Disability Rights and his friend, Jensen Caraballo.
Caraballo has a rare condition called spinal muscular atrophy type 2, a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles. So, his muscles are underdevelopedand he uses a wheelchair.
When he was 15, Child Protective Services admitted him to Monroe Community Hospital. He still went to high school. He had a bedtime and a wake-up time like other kids, except for him, someone would assist him out of his chair or out of his bed. Without that help, he'd be stuck, which he said often happened.
"If I didn't follow the structure, many times I'd either end up either staying in my bed all day or staying in my chair all night," said Caraballo.
Monroe County, which oversees Monroe Community Hospital, did not respond to multiple requests for comment.
Once Caraballo turned 18, he requested to live on his own multiple times and was denied. The message, he felt, was that he was "too disabled," and a burden to society.
"It's like I'm too Jensen," said Caraballo. "This disability is part of my identity. It's who I am. It's how I see my life, how I see my environment."
After three years, Caraballo got to move into his own apartment, where he's been living for nine years. He works as a peer mentor for others trying to live independently, including Flip Rivera.
Rivera said he had his eyes set on a place where he could've moved to in May, but the pandemic slowed his process to a halt.
So has the process for passing the Disability Integration Act. With the bill stalled in committee, what happens if it doesn't pass? That question keeps Bruce Darling up at night, especially if states make budget cuts to services for people with disabilities.
"When the economic downturn hits us hard, we're going to restrict access to community-based services, folks will be forced into institutions where they will die," said Darling. "But none of us on the outside will be aware of it or care."
This story is part of Move to Include, an initiative that uses the power of public media to inform and transform attitudes and behaviors about inclusion. Move to Include was founded by WXXI and the Golisano Foundation and expanded with a grant by the Corporation for Public Broadcasting, a private corporation funded by the American people.