Twelve years ago, Renee Christian, who has cerebral palsy and uses a wheelchair, fought to get out of congregate care. She knew she did not need the level of care congregate settings provide, after being placed in a nursing home around age 12 and then at a residence at 16. She knew she could live independently in her own home, with the right support.
However, her right to live in her community has been threatened by a shortage of home care workers, which advocates attribute to low wages determined by the state budget.
“I was hopeful because the [New York State] Senate and Assembly had dropped our whole bill in the One House Budget," Christian said.
She’s been advocating for the Fair Pay for Home Care Act (New York Assembly Bill A6329 and Senate Bill S5374). It would have raised home care wages to 150% of the minimum wage. In upstate New York, that would have brought the wage from $13.20 to $19.80. The bill would have ensured the home care wage rose with the minimum wage indefinitely. Ultimately, what the state passed was less, and focused on the next two years.
“When we went through the budget process, what we ended up getting was a staged increase; $2 in the first year, with a $1 in next year, like $2 this year, $1 next year, right? That could be added to the wage of somebody in an aide program whether that be traditional or consumer-directed," said Todd Vaarwerk, the chief policy officer at Western New York Independent Living.
“As a person with a disability, and an independent living professional, I'm mildly disappointed that we could not negotiate something stronger. I can tell you that I know that Fair Pay For Home Care is not going to go away.”
Vaarwerk, Christian, and others have mentioned concerns about low-income benefits. They question: If this wage brings you above the income limit, will it be enough?
“It's going to be about what will that $2 an hour do, in terms of somebody who's got three kids at home? Is the $2 an hour going to be enough to offset the loss of food stamps?" Vaarwerk said.
Christian worries that this may cause more people to leave the industry, making the crisis worse, and leaving people without the care that allows them to live independently.
“It makes me scared for the future. I know that I can figure out a way to make it through, but there's a lot of people that I've been here fighting for, that won't make it to next year, not in their homes. They'll end up being forced into nursing homes, group homes and institutions," Christian said.
Christian also worries about the conditions of congregate living facilities, which have faced their own worker shortages.
“I just don't think that leaders are thinking about the life that they're sacrificing to not give a fair wage," Christian said.
