In the battle against coronavirus, hospital and nursing home workers are often described as being on the front lines as they put themselves at risk to care for others.
But for thousands of personal care assistants, hospice staff or direct support workers across Maine, that moving front line may be a bedroom or a kitchen table in a private home or a small group home.
That intimate, in-person care – already a critical safety net for some older or disabled Mainers – becomes even more important when stay-at-home orders and travel restrictions further isolate home-bound individuals from family or community.
“They are truly the hidden heroes in this pandemic,” Laura Cordes, executive director of the Maine Association for Community Service Providers, said of the direct support professionals. “Each day, they are serving as a lifeline to Mainers with intellectual and developmental disabilities … and for DSPs, distancing is not an option. They are going into peoples’ homes.”
The agencies offering those critical services are struggling, however.
Providers report shortages of the masks, gloves and other equipment needed to protect staff and patients. The COVID-19 crisis has also exacerbated a long-standing workforce crisis in an industry where workers’ pay is often at or barely above minimum wage, despite the physical and emotional demands of the jobs.
And while virtual visits and check-ins are feasible with some clients, such remote care is impossible – or painfully inadequate – for others.
“Hospice is all about bringing loved ones and family and friends to the bedside, to be close,” said Heidi Farber, director of development and outreach at Hospice of Southern Maine, which serves 200 terminally ill patients and their families every day. “And this COVID thing has really changed that, and been about a 180-degree turn.”
SOME WORKERS ‘IGNORED’
Even before COVID-19 hit the state, community service agencies were reporting a workforce crisis in their ranks as employees left for jobs that paid comparable or better wages in less stressful environments.
A recent infusion of emergency funding from Gov. Mills’ administration has enabled agencies to boost the pay of an estimated 20,000 nurses, home health aides and other personal care workers who provide in-home care to older Mainers. Agency managers said the rate increases, which were approved by the Legislature this spring but expedited by Mills because of the pandemic, have helped to stabilize staffing levels during the crisis.
“We are so thankful for that, it couldn’t have come at a better time,” said Jillian Jolicoeur, the chief operating officer at Assistance Plus. She credits the rate increase with helping the Benton-based service provider with clients statewide fill 30 vacant positions.
But the direct care professionals who assist people with intellectual disabilities were left out of the funding increase, as the Legislature cut short its 2020 session because of the worsening pandemic. A bill that would have required the Maine Department of Health and Human Services to pay the state’s 10,000-plus direct care workers at least 125 percent of the minimum wage was shelved until whenever the Legislature returns.
Neal Meltzer with the nonprofit Waban said Gov. Janet Mills and DHHS “are putting forth a monumental effort to address the myriad of issues that this pandemic has caused.”
But Meltzer, whose agency serves about 1,000 clients with autism or intellectual disabilities, feels the direct support professionals, or DSPs, who provide one-on-one assistance to clients who often have multiple medical conditions “have been ignored.”
“While other states have figured out how to support DSP’s and agencies in arguably not perfect but still-effective ways, to date Maine has not,” Meltzer said. “While other populations and other services in Maine have seen relief, (intellectual disability) agencies across the state have been left to figure things out for themselves and somehow still provide care to those that they serve.”
Waban has taken multiple steps to support its staff and clients during the crisis. Direct care workers are receiving an additional $2 an hour – dubbed a “hero reinvestment incentive” – as well as 12 days of COVID leave that was set aside before Congress passed a relief bill requiring such measures.
Additionally, Waban is keeping 48 furloughed workers on the agency’s health insurance plan and is providing all meals to staff at the agency’s group homes so they can avoid potential community exposure at the grocery store. But the state is not sharing any of those costs.
Those three measures alone are costing Waban $188,000 a month.
“That is out of our own pocket … because we felt it was the right thing to do,” Meltzer said.
DHHS spokeswoman Jackie Farwell said a review of DHHS’s options for addressing the situation should be complete “in the coming days.” But any pay rate increase for direct care workers would need to be approved by the U.S. Centers for Medicare and Medicaid Services, which first requires a thorough rate-setting analysis. That work is underway.
“For that reason, and due to other federal requirements, DHHS was unable to propose increases beyond those included in the budget, which were based on already completed rate studies,” Farwell said. “DHHS values the important work of DSPs who are caring for Maine people with intellectual and developmental disabilities during this pandemic and we are aggressively reviewing all options to support them.”
But in a letter sent Friday to Mills, Waban executives warned the revenue losses from program closures and additional costs “are crippling our stability and endangering our historically reliable provision of services.”
“We cannot shoulder this burden alone,” the letter states.
Hans Olsen, a Kennebunk resident whose two sons live at a Waban group home in Sanford, said the COVID-19 pandemic “has been particularly worrisome to me and my family.” Both 28-year-old Gunnar and 25-year-old Ansel suffer from an extremely rare hereditary disorder that means they have the intellectual development of toddlers or infants and are unable to care for themselves.
“For those of us with folks in the system, the care that they receive is critical because there are so few options for us,” Olsen said.
Because of restrictions on visitors, he said he has only been able to see his two boys on occasion in the outside garden and even then must keep his distance because both are vulnerable to respiratory infections.
Olsen, who serves on the Waban board of directors, said it was “gross negligence” for the state not to provide more financial support to the workers to care for those intellectual disabilities. He questioned who should rank higher on the priority list than people who cannot care for themselves.
“At times like this, they are so easy to forget and are so easy to overlook,” Olsen said. “But we are always here. We are the quiet ones and it’s only times when we are pushed to the wall that we will speak up.”
NOT ENOUGH PROTECTIVE GEAR
Social service agencies also are facing challenges obtaining enough of the masks, gloves and other personal protective equipment, or PPE, needed by workers as they enter other people’s homes or group-care communities.
“We are reusing masks because we are trying to stretch them,” Jolicoeur said. “We have PPE but not enough … and I suspect that this will go on for a long time.”
Jolicoeur said her agency, along with others, requested additional protective gear from county emergency management agencies but they were initially considered lower priority. Assistance Plus had stockpiled some PPE as part of an emergency response preparedness network but added “it was never something like this.”
“We are all scrambling everywhere to acquire PPE,” said Colleen Hilton, senior vice president of Northern Light Home Care and Hospice. So while Northern Light is providing additional training on infectious disease control to home care and hospice workers, the company is also “being very, very careful with utilization” of protective gear.
“We are monitoring it on a daily basis,” Hilton said. “How much are we using? How much is on hand? … Are we going down? Are we plateauing?”
Meltzer said Waban was close to running out of protective gear recently, so they put out an appeal to the community.
“And they returned the love in so many ways,” Meltzer said. “Between 800 and 900 cloth masks were made by the community.”
‘NO POSSIBILITY FOR SOCIAL DISTANCING’
Wherever possible, agencies have transitioned to telemedicine, virtual check-ins and electronic monitoring to minimize risks to medically vulnerable clients.
Northern Light Home Care and Hospice, which serves more than 1,800 clients, has narrowed the number of in-home visits, sometimes at the request of individuals who are nervous about letting others inside their homes. Staff are instead making hundreds of calls a day to check in with clients.
But remote care is not always an option.
“We are still seeing the most acutely ill,” Hilton said. “Obviously, patients on IVs, with wound care or treatments that need to be done are the ones we are really focusing on.”
Waban closed it’s 14,000-square-foot child development center, canceled day programs for 90 adults and stepped up services, whenever possible, for families that depended on those programs. The agency also restricted outside visitors to group homes while still catering to the emotional needs of residents.
On a recent afternoon, staff organized a “car parade” for a long-term group home resident celebrating his 75th birthday.
But when it comes to the residential programs, Meltzer said, “this is one-on-one care – there is no possibility for social distancing.”
“I’ll be candid: it’s tough and it’s wearing,” Meltzler said. “It’s hard for our staff with their pressures, and it’s hard for our members also.”
For Hospice of Southern Maine, the “180-degree turn” that Heidi Farber described has not dramatically impacted the care and support that workers provide to clients as they near the end of their lives. But it has forced the agency to change long-standing practices involving family members.
The chaplain, grief counselors and other social services workers who typically meet face-to-face with family of the person receiving hospice care are, instead, holding those meetings remotely, whenever possible. For instance, Farber said one staffer recently held a virtual grief counseling meeting with nine people via Zoom.
At the agency’s Gosnell Memorial Hospice House in Scarborough, clients can have no more than two outside visitors every 24 hours, and those visitors are screened for COVID-19 symptoms or potential exposure before entering the building.
That’s a seismic change from the typical environment when as many family as possible are encouraged to surround their terminally ill loved ones. But it is still more access than is allowed in tightly controlled hospital settings during the COVID crisis, which Farber said has prompted some patients to leave hospitals for the Gosnell home.
“We feel like that is still pretty good in this environment,” Farber said. “But our normal process … this has really changed the way that we do hospice.”
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