More than 35 group homes for Mainers with intellectual or developmental disabilities have been hit by outbreaks of COVID-19, and the agencies that run them say state support has fallen “woefully” short during the coronavirus pandemic.

Nearly four months after the pandemic began upending life in Maine, leaders of several organizations that provide home-based or community-based care to thousands of individuals with autism and intellectual disabilities say they are struggling to retain staff, procure protective gear and, in some cases, stay afloat financially.

A temporary reimbursement rate increase from the state helped boost the pay of direct-care workers who provide the intimate, personal care to individuals with autism or intellectual disabilities. But the extra funding expired June 1, and service providers say even then it only covered a portion of those costs, much less other COVID-related expenses.

“It was a nice gesture. It was woefully inadequate – terribly, terribly inadequate,” said Todd Goodwin, CEO of John F. Murphy Homes, which which has had at least 38 COVID-19 cases among its 54 group homes in the Lewiston-Auburn area. “And it is very disappointing our state didn’t put forward something more helpful.”

Mills administration officials say they exploring additional options to help support individuals with intellectual disabilities, even as they encourage agencies to seek federal support for their programs.

To date, there have been outbreaks – which is three or more linked cases of COVID-19 – at more than 35 group homes serving individuals with autism, intellectual disabilities or mental challenges, according to a review of data from the Maine Center for Disease Control and Prevention.

These aren’t the large outbreaks seen at nursing homes and long-term care facilities, which collectively account for hundreds of cases and the majority of COVID-related deaths in Maine. Group homes are, by definition, smaller settings with typically a handful of residents served by a rotating staff 24 hours a day.

But group homes make up roughly one-third of all outbreak sites tracked by the Maine CDC. Some studies also suggest that individuals with intellectual disabilities may be at higher risk of severe complications from COVID-19 because of other underlying health problems.

Like other providers, John F. Murphy Homes has had small outbreaks at multiple sites. In all, 28 staff members and 10 residents at the nonprofit organization’s homes had tested positive for the virus as of last week.

“So we are right in the thick of it,” Goodwin said.

He estimated that his organization had paid about $420,000 for personal protective equipment, or PPE, premium pay to direct-care workers, overtime and to set up an isolation facility for infected residents. He’s not banking on reimbursements from the state.

WORKFORCE CRISIS

Agencies that provide home-based care to thousands of older Mainers or residential care to individuals with intellectual disabilities have been in the midst of a workforce crisis for years. Most direct-care or personal support services workers earn somewhere around minimum wage, which presents a retention and recruitment challenge for agencies when workers can make the same or more in less physically or emotionally demanding jobs.

Exacerbating the financial situation, MaineCare reimbursement rates have failed to keep pace with the 60 percent increase in Maine’s minimum wage since 2017. While the Legislature approved a reimbursement rate this past spring for home-care and personal support specialists who work with the elderly, reimbursement rates for workers who care for Mainers with autism or intellectual disabilities remained flat.

In April, the Maine Department of Health and Human Services sought and received permission from federal regulators to earmark an additional $13 million to increase reimbursement rates for direct care workers by 10 percent. Although the pay boost was retroactive to March 1, it expired at the end of May.

Ellis Baum, regional director at Residential Resources Inc., which operates 15 group homes in Greater Portland, called the three-month increase “a ridiculous timeframe because the virus hasn’t stopped since May 31, particularly in southern Maine, where it is still spreading.”

Residential Resources has had four residents and an equal number of staff test positive for COVID-19, with three of the residents’ cases occurring at the same home. All have since recovered, but Baum said the pandemic has imposed new, high-stress responsibilities on workers who are not medical clinicians.

His agency received a forgivable loan through the Paycheck Protection Program passed by Congress, which enabled them to pay some of the additional staff salaries but not cover other costs for PPE, new technology and other changes.

“We are already in a situation with inadequate funding and then you pile this on with the virus, it puts agencies in a difficult situation,” Baum said.

DHHS EVALUATING OPTIONS

A spokeswoman for Maine DHHS said the agency “remains committed to ensuring that adults with disabilities are supported in their homes and communities throughout the pandemic.”

Last week, DHHS announced another revision that will give agencies more flexibility when it comes to seeking MaineCare reimbursements for some services, including hours and charges related to providing telehealth. Additionally, the department increased rates paid for second and third residents in shared living settings through the end of the public health emergency.

“More broadly, DHHS has also encouraged (intellectual and developmental disabilities) agencies to apply for Federal Provider Relief Funds available through the CARES Act and several have received SBA Paycheck Protection loans,” said DHHS spokeswoman Jackie Farwell. “We are evaluating additional capacity and options for targeted support to those agencies most seriously impacted through the pandemic, including the potential for additional CARES Act funding.”

Still, service provider representatives say the state can and should do more, particularly considering that many individuals with intellectual disabilities have other health conditions that put them at greater risk from COVID-19.

Laura Cordes, executive director of the Maine Association for Community Service Providers, wrote to Gov. Janet Mills in late May to express “deep concern” about the situation facing service providers and their clients.

Cordes said the temporary funding, while appreciated, “falls far short of what state-supported Medicaid providers need in this moment to sustain programs, increase wages and cover the emergency expenses providers have incurred to keep safely providing vital care and support.”

“Without additional state and federal funding, it is likely that the pandemic will force many now cash-strapped providers to close their doors or significantly limit their operations,” Cordes wrote.

The organization asked the state to boost reimbursement rates to provide direct care workers with 125 percent of the minimum wage, which is identical to a proposal that was being considered by the Legislature before lawmakers hastily adjourned the 2020 session because of the pandemic. They are also requesting that the Mills administration tap into $1.25 billion in federal CARES Act funding to support the sector.

“We have not heard back from the governor’s office on our request,” Cordes said in an interview late last month.

‘A PARTNER’

Not all service providers are as critical of the Mills administration, however.

Kelly Osborn, senior vice president of client services at Goodwill Northern New England, said the state “has really been responsive” to the nonprofit organization’s concerns. Goodwill operates 23 homes in Maine for individuals with intellectual disabilities, brain injuries or other barriers to independence.

In addition to holding weekly calls with providers and office hours, DHHS officials helped Goodwill Northern New England connect with the Maine CDC when there were positive test results among residents of one of the organization’s group homes. Shipments of PPE arrived the next morning, Osborn said.

“I just can’t say enough about how DHHS, particularly the Office of Aging and Disability Services, has worked with us to do what was within their powers to help,” Osborn said.

Osborn described the state as “a partner” but that the agency is also exploring other options for additional funding, including from federal emergency assistance programs.

As a large organization with diverse programs, ranging from workforce training to dozens of thrift stores, Goodwill is arguably less financially dependent on state funding for programs that support individuals with intellectual disabilities.

Neal Meltzer, executive director of the nonprofit Sanford-based service provider Waban, said his organization will be operating at a loss (in the six figures) this year. A former DHHS employee, Meltzer said he understands the Mills administration’s desire to hold onto much of that $1.25 billion in federal CARES Act funding for the time being.

But Meltzer said that “ultimately it is the state’s responsibility to care for” people with intellectual disabilities. While Waban is not currently talking about closing homes, he added the organization “may have to have those discussions” in a year if the financial situation does not improve.

And he said other organizations are in the same or worse situation.

“A reimbursement rate that is less than the minimum wage and agencies that need to be around for decades who are operating in structural deficits – the alarm should be going off, and it should be really, really loud,” Meltzer said. “This can’t continue.”

CIVIL RIGHTS CONCERNS

The COVID-19 pandemic has had dramatic impacts on residents of group homes, however, many of whom have struggled to adapt to changes that include little to no visitation by family members and curtailed excursions outside of the home.

Monique Stairs, interim executive director of Speaking Up For Us, a “self-advocacy network” for people with intellectual or developmental disabilities, told lawmakers last week that people were being denied access to the community and not consulted on decision-making.

Stairs said there are also concerns about access to PPE, technology to keep in touch with the outside world and rights violations. In one case, Stairs told members of the Legislature’s budget-writing committee, one of Speaking Up For Us’s strongest self-advocates contracted COVID-19 from a staff member.

“That self-advocate felt backlash for speaking up about practices that were happening in the home that were against the CDC guidelines,” Stairs said. “And if this is happening in this home, it’s likely happening in other homes. And that is a really concerning issue.”

Kim Moody, executive director of Disability Rights Maine, said the coronavirus pandemic is laying bare some of the fundamental flaws of the state’s group home system. Moody said “the whole system is based on money and an age-old way of providing services” rather than focusing on the needs of individual clients.

The pandemic, Moody said, has led many service providers to further restrict group home residents’ access to the community, to visitors and to employment.

“The grave concern there for us is our clients are losing more independence and rights,” Moody, whose organization provides legal assistance and advocacy to the Mainers with disabilities, told lawmakers. “They see other members of the community still get takeout food, visit state parks, etc … and yet many of them are restricted to their rooms. They watch their staff come and go, they are watching their numbers of infections increase, and they are very concerned.”

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