Kelley Fox, 23, center, sings and dances with friends May 8, 2017, at the Spring Fling, a dance for participants of four local programs for adults with developmental disabilities. She's had two brain surgeries, including a full hemispherectomy, to help with seizures. (Bettina Hansen/Seattle Times/TNS) Credit: Bettina Hansen | TNS

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The groups that run day programs for those with intellectual disabilities and autism are wary of returning to normal operations as Maine begins to reopen without more detailed instructions from the state.

Since the coronavirus reached Maine in March, many of those organizations have had to switch to online options or close down completely for fear of people getting sick.

The state is almost a month into a gradual reopening of its economy, regularly rolling out new guidelines outlining how different kinds of businesses can restart.

But there have not yet been specific guidelines for the day programs designed to get clients with disabilities out into the community and allow them to have social interactions. Without that direction, some providers say they are uncomfortable with the idea of reopening, but also worry about their financial solvency the longer they wait.

Maine Department of Health and Human Services spokesperson Jackie Farwell said day programs and employment service providers can follow the state’s general business checklist and guidelines for health care providers if they wish to reopen. The department is planning to release specific guidance for day programs this week, she said.

Part of the challenge is how to navigate social distancing, said Rebecca Emmons, executive director of Mobius Inc., which runs day programs and provides other services for people with disabilities in the Damariscotta area. Some of the organization’s clients require help to eat or use the bathroom — assistance that staff members cannot provide from six feet away. Some have underlying medical conditions that put them at particular risk for complications from the coronavirus.

“Until there is widespread testing and surveillance, we don’t have confidence that grouping high-risk people together would be safe,” she said, noting some individuals may have sensory issues that prevent them from being able to wear masks.

Transportation also presents challenges, said Ray Nagel, executive director of the Independence Association, which provides both residential services and community programming for people with intellectual disabilities in southern Maine. Many clients attend day programs using public transportation, raising the possibility that someone could be exposed to the coronavirus while in transit, he said.

At least one provider has continued to operate its day program through the pandemic, and doesn’t share the same concerns about scaling operations back up.

Jon Mazarro, director of adult community services for Morrison Center Maine, which provides services in 12 counties. He said the organization’s day programs never really “closed,” but became smaller when some clients stopped attending.

One Morrison Center day program remains active with four clients. Clients wear masks, there are temperature checks, and there’s frequent communication with guardians on how a person is feeling.

“I think the way it’s been going, I have everything I need to put in place new policies and procedures,” he said.

He expected most clients to return around June 1, with the expectation that they will stay away if they do not feel well.

Day program providers also face financial pressures to reopen.

According to an April survey conducted by the American Network of Community Options and Resources, a national organization that represents service providers for people with disabilities, 68 percent of organizations had to close a service due to the pandemic and had seen revenue decline as a result.

Day programs made up 54 percent of those closed services, followed by supported employment at 31 percent and transportation at 19 percent.

Nagel said his organization has lost $200,000 in revenue from closing down its four day programs, which the state reimburses through a Section 29 MaineCare waiver. The organization has invested money into technology to hold programming through Zoom, but the service does not bring in the same revenue as traditional day program services, he said.

Maine was recently approved for a federal waiver allowing intellectual disability, autism and brain injury service providers more flexibility in how they deliver services and a temporary rate increase.

But although Maine is allowing community support programs to be held in alternative settings — such as hotels, shelters and participants’ homes — and allowing organizations to provide some services remotely, Emmons said the telehealth model does not translate into nearly as many billable hours.

“Some providers may not survive the pandemic, period,” she said. “The service model is built on the concept of group service. It’s not clear if providing that service through telehealth is financially sustainable.”

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