It has become very difficult to find at-home health care in recent years, for people with disabilities and older people.
Nearly 75% of New Yorkers lost their home care workers last year, according to a report from the Consumer Directed Personal Assistance Association. Many home health aides have pointed to low wages as their reason for leaving the industry.
In the meantime, family members have stepped in to care for loved ones. A state Medicaid program lets some get paid for that care, but many say it’s not enough to live on.
Crystal Brehm works as a peer advocate in Cortland, helping people transition from nursing homes into independent living. She lived in an assisted living facility herself before making the same transition. Matt Norton is Brehm’s significant other. One of the first things he loved about her was her generosity.
“She just keeps giving, giving, giving until she can’t give no more,” Norton said.
Because of her disability, Brehm requires at home care. Shortly after the couple began dating, the pandemic hit, exacerbating staffing shortages.
“With all the restrictions, and closing everything down, she started having issues with some of her caregivers. And eventually they just kind of dropped like flies,” Norton said.
Out of necessity, Norton became Brehm’s primary caregiver. New York’s Consumer Directed Personal Assistance Program (CDPAP), which lets people hire their own caregivers, means he can be paid as Brehm’s aide.
Norton gets paid just over $13 an hour. But if Brehm must be hospitalized, which happened recently, Norton doesn’t get paid at all. A visit to the hospital can be financially destabilizing for the couple.
“At minimum wage, you can’t really prepare for that, you can’t hardly put any money aside for something like that. With her condition it could be as long as a month that she could be in the hospital,” Norton said.
Norton could be making more money at another job, but the couple can’t find full-time home care aides. Ithaca-area Assemblymember Anna Kelles argues that’s because home care professionals are also paid too little.
“You have the fact that home health care aides are not paid well. And then you have the issue that therefore, there aren’t enough of them. So it creates a situation where some people then become home health care aides to take care of their family member,” Kelles said.
The Fair Pay for Home Care bill, currently in committee in the New York State Senate and Assembly, would raise the minimum pay for home care workers to at least $22.50, or 150% of the highest minimum wage in each region.
Kelles said the increased pay would bring more people into the profession.
“We have a demand that far exceeds supply. Up to 100,000 people in the state that are actively seeking home health care cannot get it because we do not have the supply of workforce in the state,” Kelles said.
For Norton and Brehm, a raise in pay for home care workers could mean they wouldn’t be living paycheck to paycheck anymore. The couple also wants to get married, and they can’t in New York as long as Norton is Brehm’s live-in aide. With a higher wage to offer, they might find home care professionals.
And Norton, who has medical challenges of his own, said a higher wage might mean he’d be able to get some help.
“More than just the pay for me, it would mean getting better quality help, and more easily filling the hours so I’m not working as hard and burning myself out,” Norton said.