Allan Thibodeau, left, and Alex MacKenzie, right, are direct support professionals who have worked with Kurtis Rhodes, 31, for several years. Rhodes is a resident of a group home run by OHI, a Bangor-area organization that provides services to people with intellectual disabilities, autism and mental illness. Rhodes was born with a brain development disorder called Joubert syndrome. Credit: Gabor Degre | BDN

Kurtis Rhodes has two support staff with him during all waking hours. Allan Thibodeau and Alex MacKenzie make sure he takes his array of medications, help him complete chores around the Orono house where he lives, take him out into the community, and make sure he stays safe.

Rhodes, 31, who was born with a brain development disorder called Joubert syndrome, used to behave aggressively more often. “I used to have a lot of things bolted down to the floor,” he said. “Now, things are a lot better.”

With time, and with the help of Thibodeau, MacKenzie and other direct support professionals who work for the Bangor-area nonprofit OHI, Rhodes has become better at handling stressful situations that might have previously provoked aggression. Today, he requires less support than he once did: Only one staff member has to stay with him at night, instead of two.

The starting pay for Thibodeau and MacKenzie’s job is $10.50 an hour.

Gabor Degre | BDN
Gabor Degre | BDN
From left, Allan Thibodeau, Kurtis Rhodes and Allan MacKenzie sit in the Orono home where Rhodes lives.

That’s $1 an hour more than it was a year ago. But next year, without another infusion of funding from state coffers, the agencies around Maine that serve adults like Rhodes will have less money, and they’ll have to pay their staff members a higher wage.

On July 1, six months before the state’s minimum wage rises to $11 an hour, the rates group home operators receive from the state’s Medicaid program are set to fall nearly 10 percent. Already, the Medicaid rates they receive today are lower than they were in 2007.

Last week during his State of the State address, Gov. Paul LePage called on lawmakers to “fully fund” services for adults like Rhodes, but didn’t specifically call for raising reimbursement rates. His focus was on the 1,723 adults with intellectual disabilities who, as of Jan. 31, were waiting for placements in group homes and other residential settings. (Some 3,100 Maine adults with intellectual disabilities currently live in group homes or other state-funded residences with support staff, according to the Maine Department of Health and Human Services, meaning more than a third of those eligible for those services are on the waitlist.)

But at their current Medicaid rates, the agencies that serve adults with autism and intellectual disabilities say they can barely afford to pay their direct support professionals the minimum wage. The result, according to the service providers and multiple national reports, is a workforce crisis. Without enough people willing to work Thibodeau and MacKenzie’s job, agencies have diminished capacity to serve adults with intellectual disabilities, keeping more people on the waitlist for residential placements.

At OHI, 72 of the agency’s 265 direct support professional positions — more than a quarter — were vacant in early February, said President and CEO Bonnie-Jean Brooks. With too few direct support staff, the organization is in the process of closing two of its 24 group homes, she said.

“Our vacancies have never been higher,” said Brooks.

Gabor Degre | BDN
Gabor Degre | BDN
Kurtis Rhodes walks to the mailbox at the Orono home where he lives, which is run by the organization OHI.

Lawmakers last year passed legislation to raise group home operators’ rates permanently, but they attached no funding. If they fund the legislation, LD 967, as written this year, it would cost $26.5 million in state funds each year; the federal government, which covers about two-thirds of Maine’s Medicaid costs, would chip in $57.6 million. It would amount to a 12.5 percent rate hike, the largest portion of which would be earmarked for direct support workers’ wages and benefits.

But it’s far from certain that the funding will be forthcoming.

The LePage administration last year voiced its opposition to the funding boost, saying the state needed to conduct a comprehensive study before it set new rates. There’s no legislation pending from LePage to allocate more funding, raise reimbursement rates or authorize a new rate study.

Emily Spencer, a DHHS spokeswoman, said the department still opposes LD 967 because it would use reimbursement rates set in 2007 as a starting point.

“It would be imperative to do a more up-to-date rate study that accurately reflects the current cost of providing services, especially in light of the increasing minimum wage and overtime-exempt salary level tied to it in state law,” she wrote in an email.

Spencer said DHHS hasn’t begun a rate study, “as we were not appropriated funds to do so.”

Service providers don’t oppose a rate study, but they say the need for a higher rate is urgent.

“The reimbursement rates are so low that we can’t pay workers, so they’re having trouble filling the positions,” said Rep. Erin Herbig of Belfast, the Democratic House leader and sponsor of the legislation to raise group home operator rates. “The biggest driver for the waitlist is, there aren’t enough people in these jobs to deliver services.”

Meanwhile, Thibodeau and MacKenzie are often working 60-hour weeks — both as a way to make ends meet and to compensate for OHI’s staff shortage.

“In order to make a suitable wage for [direct support professionals], working overtime is necessary for a lot of us,” said MacKenzie.

But the long hours contribute to burnout among staff members, who can find jobs with comparable pay in retail or food service that don’t require state-mandated training and don’t involve looking out for a person’s welfare. The long stretches at work can also compromise the quality of care, Thibodeau said.

“The rate of the pay relative to the work we do has definitely gone down, which has definitely contributed to that stress,” he said. “You feel that stress when you know there are all these open hours. It’s not an expectation that you work overtime, but there’s a need for people.”

Thibodeau and MacKenzie stand out in their field for their longevity: Thibodeau has worked 15 years as a direct support professional, and MacKenzie has 14 years’ experience. Nationally, about 35 percent of direct support professionals leave their positions within six months, according to a 2017 report from the President’s Committee for People with Intellectual Disabilities. Forty-five percent leave within a year, compared with 3.5 percent annual turnover in all U.S. jobs.

Gabor Degre | BDN
Gabor Degre | BDN
Kurtis Rhodes stands in a doorway in the Orono home where he lives, which is run by the organization OHI. Rhodes,
who was born with Joubert syndrome, a brain development disorder, has two direct support staff with him during all waking hours.

Nichole Ernest worked two-full time jobs as a direct support professional in Farmington after she moved back to Maine following a lay-off. “You can’t support yourself with just one,” she said.

But working that much, and for such low pay, proved unsustainable eight years later, when she was ready to start a family.

Leaving “was a hard decision because you kind of bond with the clients you’re working with,” she said. “You don’t want them to feel like it’s about the money, but you have to be able to pay your bills and be there for your family.”

Group home operators such as OHI today receive $25.04 per hour to care for adults with intellectual disabilities, 33 cents less per hour than in 2007, when the state first instituted uniform — rather than individually negotiated — rates through its Medicaid program. The hourly rate covers caretakers’ wages, their benefits, the state’s 6 percent service provider tax, and the agency’s expenses associated with running group homes, according to the Maine Association of Community Providers, which represents agencies such as OHI.

“We found all the efficiencies that I think could reasonably be found in an organization like ours,” said Jennifer Putnam, executive director of the Norway-based Progress Center, which runs six group homes in western Maine. “We feel it’s critically important to be able to pay the people who do this hard work a competitive wage. That has become more and more difficult as the years have gone by.”

The $25.04 rate is the result of a funding boost service providers received last year as part of the two-year state budget. Before that boost — which amounted to a $13.5 million increase in state funding — their hourly rate was $22.64. But the boost was only temporary. If lawmakers don’t appropriate more funding, the rates are set to revert to $22.64 on July 1.

Many service providers gave their employees raises after the Legislature appropriated the new money. Others didn’t out of concern that they would have to cut wages after a year if new funding didn’t come through. The Community Living Association in Houlton distributed the additional funding it received through bonus checks. But “people would rather have a regular raise than a bonus check,” said Rob Moran, the organization’s executive director.

More than 6,000 people in Maine work as direct support professionals in group homes and providing services in the family homes of people with intellectual disabilities, according to the Maine Association of Community Service Providers.

“We’re incurring the expenses of 2018, and we’re working with a rate and revenue that is a decade old,” said Putnam.

Maine Focus is a journalism and community engagement initiative at the Bangor Daily News.

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