BRUNSWICK — Independence Association has closed three group homes in the past 18 months and expects to close another three in the coming year. 

The organization helps children and adults with intellectual and developmental disabilities in the Midcoast and throughout Maine live inclusively in their communities, and is just one of many groups in the state struggling to retain and recruit staff while serving an ever-increasing population in need. Independence Association serves about 450 people and employs another 220. 

Through MaineCare, the Independence Association is reimbursed for $11.22 an hour for a direct support professional, a number that according to Executive Director Ray Nagel, did not take minimum wage increases into consideration. In Maine, the minimum wage is $12 per hour, and Independence Association pays a $13 starting wage for direct support professionals, covering the additional $1.78 out of pocket.

“Essentially, we’re losing lots and lots of money,” Nagel said. “That’s why we’ve had to close down homes and consolidate group homes.” 

“Ironically,” he added, “we didn’t fire or lay off anyone because we’re so short-staffed.” 

Independence Association moved into a new, $5 million facility in November that provides an accessible kitchen, green space and a fully equipped fitness studio, among other amenities. 

The new building also allows for the consolidation of two group homes into one, Nagel said. The new housing opened Monday and allows clients, many of whom are in their 60s, 70s and 80s, to age in place.

Despite the considerable upgrades, Nagel said the association is still saving money in the new location.

Making ends meet

Ruth Hastings, a direct support professional for 13 years, can’t see herself working any other job. She loves what she does, and views the people she works with as a family, “one giant dysfunctional family, but we are a family at that,” she said. 

But the work comes at a price. 

Direct support is a physically and emotionally draining job. Workers provide support to intellectually and developmentally disabled clients, sometimes helping them with basic needs like showering and feeding, or with daily life tasks, such as grocery shopping, meal preparation or cleaning. 

“Some can walk and talk with such intelligence you wouldn’t believe they’re (clients),” she said, while others “depend on us for every waking need.” 

Sometimes a person might get violent and “toss you down a hallway,” but otherwise be “very loving and all they want to do is hug you,” she said. She has to be prepared for both. 

“Every moment is a teaching moment,” she said, “and the people we care for, we love them like our own family.”

Sometimes she sees the people she cares for more than she does her own family.

Hastings works overtime more weeks than not. There are no eight hour days, sometimes they’re twice as long. She recently worked two 16-hour shifts. They try to have three clients to each direct support professional, a number Hastings said is already too high, but is sometimes pushed to four or five, when really they would like to work two on one or even one on one. 

The long days and weeks are born from necessity, in part because there aren’t enough employees to go around and in part because Hastings needs the extra money to make ends meet. 

With a half-hour commute (on a good day), finding the money just to get to and work every day can be tough, she said, leaving her to “count pennies every week.”

“I come from a two-income household, but when I look at what I have going out vs. what I have coming in, it’s hard to make ends meet,” she said, adding that she often has to consider, “Which bill isn’t going to get paid this month?” 

And yet, Hastings still wants to encourage other people to get involved in the industry. 

“Each and every individual is worth going through everything we go through,” she said.

Help on the horizon?

A commission that studied the industry’s labor shortage recommended paying direct support workers at least 125% the minimum wage, a recommendation supported in LD 2109, “An Act to Implement the Recommendations of the Commission to Study Long Term Care Workforce Issues.” 

The bill also would require minimum wage adjustments and costs of state and federal mandates be taken into account when setting MaineCare reimbursement rates. 

According to the Portland Press Herald, the results of the study came the same week that the state’s largest home-care provider announced it will close on April 30. Home Care for Maine, which serves roughly 600 low-income clients, cited low reimbursement rates as a primary factor, the Press Herald said. 

A second bill, LD 1984, “An Act to Eliminate Waiting Lists of Home and Community-based Waiting Lists for Home and Community-based Services for Adults with Intellectual Disabilities, Autism, Brain Injury and Other Related Conditions” would help fund services like those at Independence Association. 

There are roughly 2,000 Mainers with intellectual disabilities waiting to receive services. 

“Many Mainers have been forced to give up their own careers to care for their loved one,” Sen. Rebecca Millett, D-Portland, said in a statement. “We owe it to them to take action and to address this grave injustice that they have been forced to deal with.”

The bill would provide funding to clear the Section 29 waitlist, which provides in-home services and work support through June 2021, and clear the Section 21 (more comprehensive services) priority two waitlist for those not receiving any.

But according to Nagel, it’s too little too late. 

“If they raise money to fund the waiting list, that’s a really nice thing, but it really doesn’t do anything to address the root cause of why we can’t serve people,” he said. “It’s not going to do any good unless they raise the rate they’re paying people to do the work. I would say that if a person was on the waiting list now and they got funding, we don’t have the capacity to serve that person because we’re still scrambling to serve the people we do have.”

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