Agencies that support adults with intellectual and developmental disabilities in Maine say they’re on the verge of a crisis.
Declining state reimbursement rates have caused staffing shortages, which threaten the viability of their services. But the commissioner of Maine’s Department of Health and Human Services says supporting people with disabilities is a priority for the state, which has boosted funding over the past five years.
From the moment Alexis Howard arrives for work at Oliver House in Farmington, she’s on the go. Oliver House is home to four adults with intellectual and developmental disabilities. When Howard starts her shift at 6 a.m., she helps plan out the schedule of activities and appointments for the day. Then she preps breakfast, washes a load of laundry, and starts to get residents up.
Most of the residents here are nonverbal, and all of them need help with everyday tasks, including bathing, meal prep, and even just getting out of bed. Howard and another staff member hook a resident named Kevin into a lift to hoist him upright.
Once he’s up, Kevin uses a walker to go to the kitchen, where Howard serves up breakfast. Then she goes to get up another resident.
The job is demanding, but Howard says she loves it.
“I love it because you’re helping people live the life they want, and you can tell you’re doing a good job by the reaction they’re giving you,” she says.
Howard is one of the core, full-time staffers that both the residents and her employer count on daily, particularly in the past year, when she was called upon to work extra hours after four other staffers left.
And it’s getting increasingly difficult to attract people to this work.
“I see a staffing crisis,” says Darryl Wood, executive director of LEAP, a nonprofit that provides in-home supports for people with intellectual and developmental disabilities.
He says the staffing crisis stems from nearly a decade of declining state reimbursement rates. In 2007, the rate was about $25 an hour. Since then, payments have dropped to under $23 dollars an hour.
When adjusted for inflation, Wood says that’s a 30 percent decrease. And as those payments have gone down, his staff turnover has gone up.
“I think about 10 years ago, our turnover was 20 percent,” he says. “And then three or four years ago, it was 30 percent.”
Last year, he says, it jumped to 36 percent.
“Our agencies across the state are experiencing incredible turnover rates,” says Todd Goodwin, board president of the Maine Association for Community Service Providers.
Goodwin says the problem is that most providers can only afford to offer a starting pay of about $9 an hour.
“We are limited with what we can pay our staff persons for the work that they do, based upon these rate models,” he says. “So we are finding it increasingly difficult to attract and retain staff persons to do this incredibly important work.”
And a proposed rule would change how reimbursements are calculated and reduce payments by as much as 7 percent. That worries providers and many parents as well.
“I worry that the services will be lost or that they will change significantly,” says Ellie Duley of Farmington, who has an adult, nonverbal son with autism who lives at one of the LEAP houses.
Duley says when her son graduated from high school five years ago, he was placed on a waitlist to receive adult services.
“Some people will talk about their children being off the cliff,” she says. “They lose services, they don’t have adult services, they lose their children’s services.”
Duley says her son had been receiving 40 hours of support a week to build daily living skills, such as how to eat with utensils. With that support gone, she says her son became agitated and violent.
It took a year of phone calls to get him into a group home where he’s now thriving, but Duley knows how quickly that can change.
“Since 2011, it’s this administration that’s increased the funding to serve people with intellectual and developmental disabilities by over $100 million,” says Maine Department of Health and Human Services Commissioner Mary Mayhew.
Mayhew says that under the LePage administration, an additional 1,000 people are now being served. She declined to comment on the proposed rule that would change the reimbursement model, but she says the state must ensure it’s paying an appropriate amount for care as opposed to administrative costs.
“What we have to be looking at are ways in which to ensure that those dollars are going to support direct care,” Mayhew says.
Goodwin says his constituents operate according to regulations directed by the state, and he acknowledges that the state has invested more dollars into the system. But he says that’s because more people are eligible for services.
Currently, 1,200 people are a waitlist, and reducing that, he says, goes hand in hand with increasing reimbursement so there’s enough staff to care for individuals.
Back at Oliver House, Howard jokes around with Kevin. She says it took her more than a year to fully understand the nuances of how the residents at Oliver House communicate — what a certain noise or a certain look means. Those strong personal connections, she says, make it difficult for residents when staff leave.
“If a staff leaves, or anything, any change of schedule, they notice it, and it’s very hard for us to get them back to a good baseline,” Howard says.
When the Legislature convenes next month, lawmakers are expected to consider a bill that would increase reimbursements to about $29.50 an hour. Goodwin says that $7 bump would go a long way toward attracting and retaining staff in an industry that relies on strong personal connections.
This story is made possible by a grant from the Doree Taylor Charitable Foundation.