In Betsy Irish’s room, it’s all about the music. There is a big boom box in the corner, framed CD jackets and a special box just for Christmas music.
She’s hanging out with her dad, David Irish, at her group house in a suburb of Rochester, N.Y. They’re doing one of their usual activities — reading the dictionary.
“L is for letter,” she says.
“That’s what the mailman brings, a letter,” her father answers. “You could write a letter.”
“To?” she responds.
“Who you going to write to?” he eggs her on.
“Uncle Jamie,” says Betsy, her face lighting up with a huge smile as she locks eyes with her father.
Betsy, 36, lives with cerebral palsy and autism. Over the past eight years, she and her father have seen a lot of caregivers come and go.
“You get concerned with people turning over. They’re not familiar with her and don’t understand what works, what doesn’t work,” says David Irish, who is on the board of the local ARC chapter that runs the house his daughter lives in. ARC is the largest national organization providing services to people with developmental and intellectual disabilities.
A coalition of advocacy groups, “bFair2DirectCare,” says that low wages are causing high staff turnover in places that care for people with disabilities in New York state. The high turnover rate, 23 percent within the first year of employment, they say, leaves their loved ones even more vulnerable.
These caretakers help people with developmental and intellectual disabilities around the clock. They help with transportation, medical services, recreation and daily tasks like personal hygiene.
“The agency makes sure the place is staffed,” David Irish says. “They take care of that. But sometimes you come in and it’s somebody new, you don’t know them and so you’re starting over again. That becomes important, to know the people that are caring for your child.”
The coalition group “bFair2DirectCare” is asking Gov. Andrew Cuomo for an extra $45 million in Medicaid funding over the next six years to raise caregiver pay to $17.72 an hour in the New York City area and $15.54 an hour in the rest of the state.
On average, a caregiver’s pay starts at $9 an hour to $11 an hour, according to Steven Kroll, executive director of NYSARC, the parent ARC organization in New York.
“McDonald’s can raise their prices to raise their salaries. We don’t raise our prices, they’re set by the government. Now with an improving economy, as more jobs are created in other sectors in New York state, we see our workforce fleeing,” Kroll says.
States determine the rates that are paid to the nonprofits that provide support and services for people with developmental disabilities, using a mix of federal and state funds.
“There are a number of states that are in a similar situation, but New York is certainly one of the states where the shortage is most severe,” Kroll says.
To fill shifts, agencies end up spending a lot of money on overtime. In 2015, these nonprofit care agencies paid for over 6 million hours of overtime in New York, according to data collected and analyzed by members of “bFair2Directcare.”
“When the supervisors come into work every Monday morning and look at the staffing plan for the week, they’re actively worrying. Is this the week where a mistake is going to happen that was preventable?” Kroll says.
Various minimum wage increases in New York state may complicate matters further. The increase, which is part of a long-term climb from a $9 to $15 hourly rate, applies to caregivers who work with people who have disabilities. Most immediately, workers will get paid a minimum of $9.70 an hour in New York state, and $11 in New York City.
Advocates say that’s not enough to retain staff for such demanding jobs. Fast-food workers, for example, are also getting a pay increase to $10.75 an hour in New York state and $12 in New York City.
The New York Department of Health sets Medicaid reimbursement rates for agencies that work with people who have intellectual and developmental disabilities. A representative from the Department of Health said they are aware of the workforce problems.
“The empathy and dedication of direct support caregivers enables individuals with developmental disabilities to actively live in their community,” a health department spokesperson wrote in an email.
The representative added that the Department of Health is offering “a provider-specific add-on to each Medicaid rate,” effective January 15th 2017, to implement the minimum wage requirement. A request for further details about changes to Medicaid rates was not immediately answered.
Separately, a budget increase could improve Medicaid reimbursement rates for not-for-profit agencies. Traditionally, Gov. Andrew Cuomo has proposed the state budget in January.
This story is reported from WXXI’s Inclusion Desk.