BRUNSWICK — After nine months of socially distanced visits from the driveway, Deborah Dionne is preparing for her daughter to come home for the first time since March.

They missed her daughter’s 41st birthday, Dionne’s birthday, her husband’s birthday, and all the holidays in between. Now, Dionne has the meals planned, her COVID test scheduled and a copy of “Home Alone” ready to queue up so they can “pack in as much family time as possible.”

This visit home is especially important for Dionne, as she can tell her daughter, Kate Riordan, like so many others, is being worn down as the coronavirus pandemic continues. 

Riordan, who has Cerebral Palsy and is nonverbal, lives in an Independence Association group home. With the organization’s day programs currently shut down, her weekly driveway visits with her mom and the occasional afternoon drive with a staff member are the only changes of scenery she gets. 

Kate Riordan holds a bouquet of paper flowers she made for her mother’s birthday. The pair had to celebrate from the driveway due to the risks of the coronavirus pandemic. Courtesy of Deborah Dionne

Independence Association helps nearly 450 children and adults with intellectual and developmental disabilities in the Midcoast and throughout Maine to live inclusively in their communities.

Four of the most popular adult day programs — Spindleworks, EnVision ME, Chatty Goose and Spinoff Studios — supporting 145 adults, are closed, limiting clients’ ability to be out and about in said community. Staff and clients alike are struggling to keep spirits high. 

According to a recent study in the Journal of Applied Research in Intellectual Disabilities, “The social distancing and isolation measures implemented to manage the pandemic are known to impair mental health, and this burden is also likely to be greater for people with intellectual disabilities because they have generally poorer coping abilities.” 

“The COVID fatigue affects our population differently,” said Ray Nagel, Independence Association director. “When we’re under these types of restrictions, the people we support are more apt to have behavioral issues and more apt to be depressed… Being limited to the house, you get that natural sense of boredom, you remember that you’re separated from your family.” 

It’s that isolation that Dionne sees taking a toll on Riordan.

Ruth Hastings (left), a direct support professional at Independence Association completes a puzzle with clients, including Kate Riordan (center) in March before the organization’s day program closed down. Hannah LaClaire / The Times Record

She has a daily facetime visit with her daughter, who uses an iPad and sign language to communicate. 

“I have noticed she’s become fatigued… This mental health piece and lack of socialization, I can see it when I talk to her in the morning… When you don’t have that support, the social interaction, it’s pretty tough to try to keep spirits up,” Dionne said. 

Riordan has had a boyfriend for the last 19 years, and she’s been able to see him, like her mother, through driveway visits, but it’s not the same. 

She misses her friends, too, and seeing them through the Zoom-based programming the organization offers in the interim is not enough to bridge the gap. 

“They have this camaraderie … they’ve known each other forever,” Dionne said. 

INCREASED RISK

This COVID-fatigue is of considerable concern to Nagel, who is worried that as hard times drag on, people will let their guard down. 

Independence Association has about 40 clients in group homes and another 35 to 40 in apartments in the community living program, and while they’re receiving excellent care, the risks are still disproportionately high.

A New York Times analysis of insurance claims data published earlier this month found that people with intellectual disabilities and developmental disorders are three times more likely to die from COVID-19 than others with the diagnoses. 

This is due to several factors. 

Many live in group homes, require care that involves close proximity to others, and are medically fragile to begin with, with higher rates of underlying health conditions, especially lung and heart problems which make them especially susceptible to the virus.

That fear isn’t lost on Dionne, who, despite knowing her daughter is well taken care of, can’t help but worry. 

Kristi Schall, a member of the Independence Association, tosses the ribbon in the air after the official ribbon cutting of the new Independence Association facility at 3 Industrial Parkway on Nov. 20, 2019. Hannah LaClaire/The Times Record

“I want to believe that better days are coming,” she said. “We all need to be part of the solution by wearing a mask, washing our hands, and using social distance.  My daughter, her housemates and staff’s lives are depending upon all of us and the choices we all make.”

Despite everything, Riordan is doing well. 

“Kate’s been keeping it together, I’m incredibly proud of her,” he said. “She’s flexible and resilient and has been very cheerful, very optimistic.”

The separation from her family has caused Riordan to make progress in her own independence, a surprising silver lining, Dionne added. 

But that’s not the case for everyone. 

According to Nagel, the isolation and variance from routine creates stress which can cause adverse behaviors in many people with special needs. 

“People that have propensities for certain behaviors, those behaviors are exacerbated under those conditions,” he said.  

A recent report from the College of Psychiatrists of Ireland said that cognitive impairments can limit a person’s understanding of information to protect them, relying on caregivers to be vigilant on their behalf during quarantine.

The report stated: “Restrictions on usual activities are likely to induce mental stress … leading to an escalation in challenging behaviors, risk of placement breakdown and increased use of psychotropic medication…  The mental health of people with ID can be affected in similar ways, if possibly with greater impact because of the demands of quarantine potentially triggering problem behaviors.”

These increased “problem behaviors” put clients and staff at increased risk and place additional emotional and physical burdens on care providers. 

NO LIGHT AT THE END OF THE TUNNEL

The providers, known as direct support professionals, are working more hours in increasingly dangerous conditions as we face “our darkest points in this battle on COVID,” yet have not received hazard pay since May 30. 

Ray Nagel, director of the Independence Association in March. Hannah LaClaire / The Times Record

“There’s a generalized malaise about the entire situation,” Nagel said. “They don’t see any light at the end of the tunnel.” 

The issue is compounded by significantly reduced staffing levels, a problem for Independence Association long before but certainly exacerbated by the pandemic. In order to be fully operational, the organization needs 240 employees. Right now there are about 170. 

In March, The Times Record reported that officials at the nonprofit closed three group homes last year and expect to close another three this year as they struggle to retain and recruit staff. 

Through MaineCare, the Independence Association is reimbursed for $11.22 an hour for direct support professionals. In Maine, the minimum wage is $12 per hour, and Independence Association pays a $13 starting wage for direct support professionals, paying the additional $1.78 out of pocket.

Earlier in the year, Nagel was looking to a new bill that would increase pay at organizations like Independence Association and require minimum wage adjustments and costs of state and federal mandates be taken into account when setting MaineCare reimbursement rates. 

But now, Nagel is resigned to waiting longer for the funding as the state and the nation focuses on the pandemic.

Ironically, the chronically low staffing levels at Independence Association have helped to keep personnel costs down while the organization grapples with the loss of revenue from the required shut down of the day program. 

“We are managing better than I expected,” Nagel said, but “we’re losing money, lots of money.” 

In the last fiscal year, the organization lost roughly $550,000 in revenue.  

In June, Independence Association reopened the day program for about two-thirds of clients — those living in their group homes and independent living facilities, people who had the ability to keep a mask on at all times and who did not have behavioral issues that would put others at risk — offering an emotional and financial reprieve. Due to the steep rise in cases, it closed again last week. 

Nagel has been advocating for placeholder money from the Department of Human Health and Services, but the money just isn’t there. 

“They’re doing, in my opinion, a pretty good job,” he said of DHHS. “They also have limited resources but they really are trying to help us.”

The organization is able to stay solvent partly based on previous smart decisions and assets officials have been able to save over the years, but primarily because of the employees who have stepped up the plate, Nagel said. 

“Our Direct Support Professionals are heroes in the same sense that a nurse or a fireman is a hero but they don’t get the attention.”

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