Five days a week, 45 minutes a day, Troy Hughes visits with a therapy assistant. They pull out his arms. They open up his fingers and stretch them out. They put him on a tilt table and stand him up. Then they’re done.
That’s the therapy Troy Hughes receives. It's the bare minimum. “Maintenance therapy,” they call it. But it keeps him alive and functioning.
After suffering a traumatic brain injury on a motorcycle 14 years ago, Hughes requires 24/7 care. He cannot speak. He cannot swallow food or water. He wears an adult diaper.
If Troy didn’t receive the therapy, he would curl up. His arms would hug his body and his fingers would ball into a fist – permanently. If that happened, he couldn’t even do the few things that he can do now – like spell out words in his mother’s palm.
That’s what his mother, Teresa, worries about. Barring any “11th-hour legislative relief,” President of Continuing Care at Spectrum Health Karen Pakkala said, Spectrum Neuro Rehabilitation Homes, where Troy lives, will close the doors of its six homes as a result of changes to the no-fault auto insurance law.
Then Troy will go from a facility with 30 people to the Spectrum Nursing Center with 160 beds.
After his injury in 2007, he spent a year in the same skilled nursing center. The thought of him returning there brings Teresa to tears. She can’t help but remember the grim details – how no one took him out of his bed, how he was never dressed and how he often laid in feces and urine with just one shower a week.
“Sad, very sad,” said Teresa, a Middleville resident. “It’s just not fair to throw him into a sterile hospitalized kind of life in a room where there’s half the staff so he would just be sitting there staring at a TV all day long.”
The no-fault auto insurance reform, which went into effect July 1, cut reimbursement rates by 45 percent for Medicaid payable medical expenses for survivors of traumatic brain injuries.
“It's cutting funding back to what reimbursement levels were 30 years ago,” Tom Judd, president of the Michigan Brain Injury Provider Council, said. “There are no businesses that can operate under the same revenue stream that they were operating under 30 years ago. It’s just not reasonable.”
Before the reform, victims of auto accidents received full coverage for their medical costs. Now, places like the Neuro Rehabilitation Homes are having to close because of the drop in payment. As a result, people, like Teresa, are left to wonder what will happen to their loved ones.
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Fourteen years ago, Troy Hughes was waiting to turn left at an intersection in Middleville when his motorcycle was hit by a pick-up truck.
Then 19, he was in critical care for 10 weeks. If Troy lived, the doctors told Teresa, he would be a “vegetable.” But she wouldn't let them take him off life support. He squeezed her hand and that was all she needed to know that the Troy Hughes she once knew was still there, somewhere.
Before his injury, Troy was loud and had a lot of friends, she remembered. Teresa called him “everybody's favorite bad boy in Middleville.”
“Peace out,” she laughed, imitating Troy and making a peace sign. “He just was in your face. Yeah, he was, he was really popular.”
After graduating from Thornapple-Kellogg High School in 2006, Troy went to work for Comcast. He started as an installer and advanced to team leader in the span of seven months. Then came the crash.
Before the accident even hit the news, 300 people visited the hospital to see Troy, Theresa said. There were so many people that the security guard had to take them down to the elevator in groups for smoke breaks.
Troy spent a year in Spectrum Nursing Center before he was moved to Homewards North in the Neuro Rehabilitation Homes, often referred to as an “adult foster care home,” where residents receive 24-hour supervision from caregivers who have specialized training working with people who have brain injuries.
He was put on “aggressive therapy” for two and a half years. He would ride horses, write, roll himself over and pedal a bike. Slowly, he got better and Teresa even has a photo of him standing in his room with a walker.
While he was in critical care, Teresa lost guardianship of Troy, who was assigned a state-appointed guardian. The next few years were messy, as Teresa battled with the former guardian in court about the best steps forward for Troy. In the process, Troy lost the aggressive therapy and switched to maintenance therapy against Teresa’s wishes.
His living situation in the Neuro Rehabilitation homes is not perfect, Teresa said. Without the aggressive care, he has lost muscle and the ability to swallow. But that's better than leaving there, Teresa said.
The staff workers know Troy, or “Troy-seph” (like Joseph) as they call him, at the home. They know he doesn’t like when they brush his teeth too hard. They know he’s upset when he shakes. And they know, when he blinks twice, he means “yes.”
Before COVID-19, they took him out on trips to the county fair or a Grand Rapids Griffins hockey game, one of his favorites. Teresa visits at least three days a week when she can take him out for walks to the gazebo and koi pond.
“That's his home,” she said. “It's not a sterile hospital room. It’s where he's lived for the last 13 years. His bedroom’s there. His housemates are there. Some of the same people have been working there the entire time. And they all care and love him.”
When Spectrum Neuro Rehabilitation closes its doors in the coming weeks, Troy will move to the skilled nursing center, where he will live in a larger setting without the same kind of care.
“We know it’s not what’s desired,” Pakkala said. “It's not what we would want to do. What we would love is a different solution.
“Right now, we're working within the confines of the options we have.”
Pakkala said they are trying to ease the transition by providing virtual tours, speaking with guardians and moving some of the caregivers from the Neuro Rehabilitation Homes into the skilled nursing center.
But the features of the adult foster care home cannot be replicated due to the size of the skilled nursing center.
“In the residential program, they have a lot of customized attendant care that's able to focus on very specific needs of the individual patient,” Pakkala said.
“There's a fair amount of activity around re-entry into the community, very much a customized individualized program, and they have a small home setting. ...[In the skilled nursing home,] everything is on a larger scale. There are many more residents in our program.”
In adult foster care homes, Judd estimates that, on average, caregivers work with anywhere from three to five patients. In nursing homes, that number can balloon to 10 to 12.
“They don't have the specialized care and training for individuals with severe brain injuries that have cognitive needs, behavioral problems, emotional regulation,” he said.
Teresa worries most about the social aspect of the skilled nursing facility, where he will lose the friends he has developed and the space he is comfortable in. She was told that she cannot take him outside and she can only speak with him through a Plexiglas door.
“I worry that he's going to be left in his room a lot, alone, because there's not a living room for him to be in,” she said. “ ...He’ll be in a room with who knows who. It's scary to think that you would be in a room with somebody that’s incompatible.”
In response to the changes to the no-fault auto insurance law, the state has set aside $25 million for those survivors who were in the system before the new law passed.
But that won’t solve the problems Neuro Rehabilitation is facing. They’ve tried to stay afloat for the last few months, but they can no longer continue to operate with the reduced reimbursement rates.
“Even $25 million, it seems an extraordinary amount of money, it isn't going to sustain the program work in perpetuity,” Pakkala said. “We want a long-term solution for patients. That might be a Band-Aid for a bit of time for some providers, it might help us over the next few months, but it's not going to sustain the program forever.”
Judd has continued to hear about people struggling to access the $25 million, which requires a lengthy application process. And even if they do access the money, the funds are capped at $500,000 per calendar year for each provider, he said, which cannot sustain the costs of living for people who require 24/7 care. He doesn’t know of anyone who has been able to secure the funds.
“It might help to save a case here or there, but it's not going to allow a business that would otherwise not be operational to sustain operations,” he said.
Following a presentation on the state budget at the Tyden Center on Oct. 1, State Rep. Julie Calley, R-Portland, said there haven’t been any updates to the auto insurance reform.
And she doesn’t foresee any taking place.
Calley said that she has heard of people accessing the $25 million and, to her knowledge, “it's working once we connect them.” She noted that the state will continue to use the $25 million as a primary solution. From there, they will then collect data, she said, and determine best steps forward.
“It's actually collecting data and understanding – what do these services cost?” she said. “What are the expenses that are incurred? Obviously, they need to make something above that, or they're not going to stay in business, right? So we want to make sure that it's a sustainable system that properly supports these businesses or individuals, depending on the size of the provider.”
When Teresa heard in August that they were going to close Troy’s house, she responded by contacting every state legislator she could find. She wrote a page-long letter describing Troy’s situation and asking for help. Then she sent the letter to 50 politicians, including state representatives, senators and even the governor. She spent $20 in postage and mailed them to the Capitol, but that batch bounced back.
So she sent out another batch. This time, she sent the letter to each representative’s individual office and forwarded a personal email to Calley, who called Teresa back on Thursday.
“You get desperate, you do desperate things,” she said. “I don't know what else to do.”