TRAVERSE CITY — Punctuation has been a real bear, but Cody Masson is making progress on her novel.

The main character, Vincent, is a wolf.

He’s the pack’s powerful alpha, suddenly besieged by forces beyond his control.

“It doesn’t take long before it turns into this whole big drama,” Masson said, during an interview inside the Front Street offices of her attorney, Jay Zelenock.

Masson’s voice rises when she’s excited or feeling stressed, and detailing what Vincent is up against, has Masson stopping to catch her breath.

Fiction isn’t the only writing Masson does — her thesis for a master’s degree in psychology is titled, “What do psychologists have to say about caregivers in terms of pay rate, recruitment and turnover.”

Writing about a wolf, however, is a way to reimagine the thing she said she’s most afraid of:

That the in-home aides she depends on to keep her safe and alive, won’t show up for work.

Or be sober. Or stay awake.

“I type with one finger,” Masson said, of her writing process. “Predominantly I use my phone, which will do talk-to-text transfer.”

Masson, 32, was diagnosed with cerebral palsy at birth, uses a power wheelchair and a body brace and needs help dressing, cooking, eating, showering, using the bathroom and transferring in and out of her wheelchair.

She lives in an apartment in Garfield Township with her cats, Ghost and Jasmine, and her service dog, Phoebe.

She can use a cellphone, she can steer her wheelchair, enjoys socializing at Taproot Cider House on Front Street and volunteering with the VFW.

To help control the stress of living in a world she said does not understand the needs and ambitions of people with disabilities, she meditates.

“People see the wheelchair and automatically think I’ve got less going on up here,” she said gesturing to her head. “Which is frustrating and also ridiculous.”

Paid staff — called “Community Living Supports” — employed by vendors under contract with Northern Lakes Community Mental Health Authority, work in her apartment in shifts, 23 hours per day.

Until they didn’t.

Which is where the attorney comes in.

Months of staffing shortages prompt lawsuit

“It was neglect, I don’t think there’s any doubt about that,” Zelenock said, of the six months of documented staffing shortages plaguing his client.

“Northern Lakes was taking the position that they’d contracted with an outside provider, and even though that provider was failing, it wasn’t their fault.”

Zelenock filed a lawsuit in July against Northern Lakes in 13th Circuit Court, after he said Masson’s repeated pleas for help from the organization not only went unheeded, but resulted in a suggestion that Masson be placed in an adult foster care home.

“She has a statutory right to be in the least restrictive environment possible,” Zelenock said. “It was in the midst of the worst part of COVID and the greatest uncertainty, when they were pushing the AFC home, and that was not an attractive option at all.”

“I’d lose my pets,” Masson added. “The first facility that was mentioned to me over the phone was MediLodge. The place that was receiving COVID patients from downstate. I was terrified.”

MediLodge GTC, a nursing home on LaFranier Road, was designated by the state as a “hub,” able to accept hospital transfers of recovering COVID-positive patients. The facility has had 156 documented cases of the virus, their website states. Federal Centers for Disease Control data shows 14 of the facility’s residents have died of the disease as of Feb. 21.

Northern Lakes CEO Karl Kovacs declined to speak about Masson’s specific difficulties, citing confidentiality issues.

He did say, like many healthcare organizations, staffing shortages during the pandemic had a major impact on Northern Lakes, but were now improving. Partly because he and other community mental health organization leaders successfully pushed to provide workers a $2 an hour hazard pay wage increase.

“We could always use direct care workers to help provide CLS, but I think things are markedly different now in comparison to last March to July when COVID created a lot of difficulties with providers,” Kovacs said.

Relying on vendors to provide needed care

One of those providers is a nonprofit, Real Life Living Services, with offices in Cadillac, Manistee and Grand Rapids. Kovacs credited Real Life with enhancing their services when it was most needed, and said he was appreciative of the relationship between the two organizations.

Masson’s experience with the provider has been varied, she said, with documented gaps in service most acute between March and August.

“You can’t find staff out of thin air,” Kovacs said, of Real Life’s staffing problems during the pandemic.

While Northern Lakes argued in court it shouldn’t be forced to pay more to Real Life vendors than their contract specified, this is exactly what happened after Zelenock succeeded in getting a judge to sign a court order.

Zelenock said any enhancement of services by Real Life, was likely the result of that order, which indirectly forced Northern Lakes to pay the provider more, as an incentive to continue to cover Masson’s shifts.

Executive Director Benjamin Woodside did not respond to a request for comment, though internal communications between Woodside and Northern Lakes Contract Manager Mark Crane confirm Zelenock’s theory.

“Mr. Crane said in his conversations with Mr. Woodside, it was determined that Real Life Living Services would be able to continue providing services, but at a higher reimbursement rate from NLCMHA,” documents show.

“Mr. Crane explained that Mr. Woodside said the only staff he could find to work with Ms. Masson when a staff called off would have to drive to Traverse City, Michigan from Ludington, Michigan, and Ms. Masson was costing him a lot of money in mileage and travel time for the staff, which was an issue for RLLS.”

Masson navigates a staffing obstacle course

Northern Lakes’ contract with Real Life began in 2019, though the provider started working with Masson on March 6, 2020, documents show.

Within a week, Recipient Rights — a kind of internal affairs office for Northern Lakes — began receiving complaints, some filed by Masson, some filed by her friends and at least one filed by a Real Life Living Services manager no longer with the company.

On May 14, 2020, after Masson was left alone for several hours, she called her sister, who called paramedics.

They responded quickly and helped her use the bathroom, but said if they were called again, protocol dictated they had to take Masson to the emergency room.

“To me that’s code for paperwork, a possible inquiry and maybe even pressure to cave and move to an AFC,” Masson said.

On May 25, 2020, court filings and a Recipient Rights complaint show Masson came home to find that a Real Life employee and her boyfriend had let themselves into Masson’s apartment while she was gone and without her permission.

Both had been drinking, the employee was asleep on the floor but woke up when Masson came in, the employee’s boyfriend was asleep on the couch and Masson and a friend who accompanied her were advised to just let him sleep, according to the records.

“You’ve got a good chance of getting hit if you try to wake him up when he’s drunk,” the employee warned, according to the complaints.

In previous shifts inside Masson’s apartment the boyfriend choked the employee, so Masson said she believed the threat was valid.

Masson said she felt like she was in a no-win situation. In all of May and June, her shifts were fully staffed just 13 of 62 days. If she reported the couple, she’d risk losing what little care she had.

Days later Masson was again left alone all day, from 8 a.m. to 3:30 p.m. and, remembering what paramedics had said, didn’t drink anything. She became dangerously dehydrated — she said she was trying to make sure she wouldn’t have to use the bathroom, which she can’t do on her own.

A final straw: On June 12, a Real Life employee admitted to stealing medicine prescribed for Masson’s dog.

‘Nowhere to go’

Throughout the summer, Masson turned to her close contact at Northern Lakes — called a “Case Services Manager”—for help, and documents show the manager, Courtney Gilbert, made extensive and repeated calls to staffing agencies, to no avail.

Virtually every home health care agency in the state needed more workers and there were none to be had.

When Gilbert reported this difficulty to her supervisors, the directive came down: keep offering Masson an AFC placement.

“Ms. Gilbert said she remembered telling Ms. Blamer she was uncomfortable offering because she already knew what Ms. Masson would say and, ‘it was so uncomfortable for me to have to do that,’” a Recipient Rights complaint investigatory document states.

Joanie Blamer is an administrator at Northern Lakes, who served as interim director from mid-July to October, while Kovacs was on a temporary paid leave of absence, board minutes show.

“Ms. Blamer said that regardless of Ms. Gilbert’s feelings on it, she was not in the position to make that decision for Ms. Masson and told Ms. Gilbert, ‘I understand but until she tells us no, she has to be offered every service,’” the document states.

Masson said she did say no, many times, and Gilbert not only continued to bring up the subject, but suggested specific AFC homes with openings, some of which were for people with developmental disabilities.

“I have a master’s degree — all that’s left is to do my clinicals — and I’m planning to go for my PhD,” Masson said, the pitch of her voice rising quickly, higher and higher. “Looking back on that time, it was just scary. I felt like I had nowhere to go.”

On Aug. 11, 13th Circuit Court Chief Judge Kevin Elsenheimer signed an order mandating Northern Lakes either provide staff for Masson’s shifts or find someone who could. That’s when the pay rate for Real Life Living went up, Zelenock said, though the amount hasn’t been disclosed.

In Northern Lakes’ 2020 fiscal year, the organization paid Real Life nearly $300,000 to provide both behavioral health and CLS services, according to documents provided the Record-Eagle via a Freedom of Information Act request.

Since the contract was signed, 35 people who qualified for Northern Lakes services have received them from Real Life, as of Jan. 31, the documents show.

Masson said staffing has improved since the court order, though she’s had trouble with two secondary providers Northern Lakes contracted to cover shifts Real Life said they may have trouble staffing.

One was a communication issue; the other sent a staff member who fell asleep, Masson said she complained, and that provider voluntarily canceled an agreement to fill some of Masson’s shifts.

On Thursday, Masson said she learned Gilbert will no longer be her contact point at Northern Lakes.

Masson said Gilbert, who is named in the lawsuit, told her she is going to have to find someone else.

When mentioning this new obstacle, Masson sighs loudly.

“She asked me if I had any questions and I said I had one — Is there a form to fill out?”

A settlement conference is scheduled for April 13; if no agreement can be made, a four-day non-jury trial is scheduled in 13th Circuit Court beginning on May 25.

“People see the wheelchair and automatically think I’ve got less going on up here. Which is frustrating and also ridiculous.” Cody Masson

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