Across Maine, about 1,000 disabled adults have been living for years in unlicensed one- or two-bedroom residences.

This network of 560 small homes, along with some bigger facilities that are licensed, was designed to replace warehouse-style institutions where people with intellectual disabilities and autism spectrum disorder had long been neglected and mistreated. The small homes, funded through Medicaid, provide a place where residents can get the support they need in a safe, community-based setting while retaining independence.

But those homes have come under scrutiny following the death of 62-year-old Norman Fisher this summer. Fisher had recently moved into an unlicensed two-bedroom home in Portland when he died after someone failed to give him the insulin he needed to control his diabetes.

Portland police are investigating the circumstances of Fisher’s death, which prompted the state to immediately halt new admissions to the organization that managed his home, Residential and Community Support Services of Biddeford. The state later terminated its contract with RCSS after concluding that the agency was not doing enough to keep its residents safe.

In the meantime, the Department of Health and Human Services also has begun to enforce newly written licensing requirements for these small group homes. Commissioner Jeanne Lambrew concluded early in her tenure that the longstanding exemption should end, noting that 30 other states require all such homes to be licensed. DHHS sent notices in April to dozens of providers, instructing them to license the homes by next July, a process that includes bringing them up to various building codes, including fire safety, and mandates staff training in areas such as medication management.

Although the notice was sent months before Fisher died, his case is precisely the kind of thing the state wants to prevent. Each of RCSS’ 38 homes was unlicensed.

“Licensing these locations will ensure trained professionals have visited and assessed each site to confirm the setting is safe and sanitary,” the April licensing notice to providers reads. “The change will also help address quality issues and ensure consistency in the areas of medication management and administration, staffing ratios and supervisory oversight, and comprehensive and appropriate training of staff. It also reduces the risk of abuse, neglect or exploitation.”

As of Nov. 1, 50 license applications had been submitted and 15 had been granted licenses, or fewer than 3 percent of the homes.

Service providers said they mostly welcome the change, although they also acknowledge that it will be an administrative burden at a time when many are struggling to find and retain workers.

Laura Cordes, executive director of the Maine Association for Community Service Providers, said her organization supports the new requirement but hopes the state will be flexible.

“We believe the licensing requirement creates an additional means of protection for individuals receiving home support services and early opportunities to ensure the safety and support for people with intellectual and developmental disabilities,” she said, adding that the effort “will not be successful without addressing a few key challenges, including the associated costs for providers who are already stretched thin and impacted by the state’s workforce shortage.”

Ellis Baum, regional director for Residential Resources, which manages 15 group homes in Maine, 13 of which are one- or two-bedroom homes, said the new rule will affect several of them.

“I do anticipate some environmental modifications to some,” he said. “That’s sometimes a challenge as our funding doesn’t cover that. It’s an out-of-pocket expense.”

BROAD NETWORK OF PROVIDERS

Under Medicaid, the state of Maine offers residential and community services to adults with intellectual disabilities and autism spectrum disorder. Although the state oversees these services, the care is carried out by a broad network of service providers, some nonprofit, some for-profit.

As of last month, the state provided services to slightly more than 5,700 people, including 3,186 who receive comprehensive residential services. Another 1,913 are on a waitlist for some services, although nearly two-thirds of that group is receiving other services.

The community-based system was built to replace large-scale institutions like the former Pineland Center in New Gloucester, which closed during a period known as deinstitutionalization.

In recent years Maine has faced significant challenges in providing quality care to this vulnerable population.

In 2017, a federal audit found that the state did not meet requirements for reporting and monitoring critical incidents of adults with disabilities, including failing to properly investigate 133 deaths. By comparing emergency room visits with provider reports, the Office of Inspector General for the U.S. Department of Health and Human Services concluded that Maine’s providers failed to report 34 percent of critical incidents.

That audit, which surveyed a 30-month period from January 2013 to June 2015, led to some reforms, but DHHS Commissioner Lambrew, former deputy director of the White House Office of Health Reform under President Barack Obama, has pushed for more. That includes improving the critical incident-reporting system to include an electronic dashboard and quarterly reviews with all providers and also instituting the new licensing requirement. Previously, only facilities with more than two beds were required to be licensed

In its notice to providers, DHHS said the National Association of Medicaid Fraud Control Units found unlicensed facilities can lead to safety and sanitation issues among other concerns, such as fraud.

DHHS spokeswoman Jackie Farwell said she didn’t know why the smaller homes were established without licensing requirements and couldn’t speak to practices of previous administrations.

Richard Estabrook, former chief advocate of the now-defunct Office of Advocacy, which has since been replaced by Disability Rights Maine, said the licensing exemption for one- and two-bedroom homes was longstanding, though he isn’t sure exactly why. He said it could have been simply that the state didn’t have the capacity to license the smaller homes.

Under the state’s new licensing requirements, homes will have to comply with existing regulations for fire safety, plumbing, water supply and sewage disposal. Providers also must develop a master plan for emergency situations such as loss of power or heat. The new licensing requirement means those homes all must be inspected and can be subjected to unannounced future inspections. It also includes staff training requirements, detailed instructions about how to administer medication and a section on residents’ rights relating to their care.

Estabrook said licensing the homes will help address any building defects that might lead to inadequate care, but he said it doesn’t address the systemic problems or the poor communication that he said seemed to be the biggest factor in Fisher’s death.

Although the state has not commented on Fisher’s death, including whether licensing the home would have made a difference, officials have said that the problems with Residential and Community Support Services were deeper than one case. RCSS has pushed back against the state, which it says is responsible for Fisher’s death because he was under state guardianship, and has even threatened to sue.

COMPLIANCE AND WAIVERS

Other organizations have been preparing to bring their homes into compliance as well.

Elizabeth Sullivan, state director of Granite Bay Care, which operates 70 group homes throughout the state – most of them two-bedroom facilities – said she welcomes the change.

“Granite Bay Care’s standard practice is to manage each program as if it was licensed by following all licensing requirements,” Sullivan said. She said the paperwork might be cumbersome, but she doesn’t envision it will change anything about how the homes are run.

“Granite Bay Care has an infrastructure made up of RN nurses, clinicians, a psychiatric nurse practitioner, training department, and seasoned management staff to ensure regulations are followed and homes have proper oversight,” she said.

Some, though, may have a harder time. Cordes, with the providers association, said she hopes the state considers a waiver process for special circumstances so clients are not displaced.

Given that the state is in the process of finding new homes for the 60 clients who have to move out of RCSS homes, additional displacements are a concern. Many of the providers affected by the new licensing requirement also have been asked to take in some former RCSS clients.

Cullen Ryan, who serves on the Maine Development Services Oversight & Advisory Board and has an adult son with autism, said he hasn’t heard many concerns from families about small homes being unlicensed, but he supported the change.

“I know that there are some steps that will add some financial costs that could be a burden. I hope there is a mechanism to help pay for some of this,” he said.

Ryan said the bigger issue he hears is that organizations are increasingly struggling to hire and retain staff members.

“If people are not able to access homes because these agencies can’t find staffing, that’s a huge problem,” he said.

Baum, with Residential Resources, said his organization has struggled in that area and he, too, worried about the impact of the new rule.

“We are in support of this initiative. How do you say no to higher safety standards?” Baum said. “We want to maintain the highest level of safety for anyone, but of course it does present some administrative challenges and burdens at the same time.”

Lambrew has said that her department has been working to identify other areas of reform to address the workforce challenge and other problems.

Baum said he’s been impressed with the administration’s communication.

“My conversations with the state on this have been clear they want collaboration; they want to work with providers to figure this out,” he said. “There are still challenges that agencies will face, but the message I’ve heard is that they want to work together.”

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