From struggle to catalyst
Firefighters visited Jeffery Henson sometimes four or five times a day in January. That month, he called 911 more than 90 times.
They knew the route and his apartment at Mary Walker Towers well by then. In the months before, Henson had pressed his medical alert button more and more often, signaling to first responders that he needed help.
Capt. Skyler Phillips, EMS coordinator at the Chattanooga Fire Department, sat at his desk this winter and read the staff notes detailing how many calls came from Henson.
"The thought occurred to me, 'I wonder if anyone has ever looked into why he calls so much?'" Phillips wrote in an email. Both sides would be better off if they could address the "why."
"Not because we don't want to go - we've developed a relationship with this man," Phillips said during a June meeting at the Chattanooga-Hamilton County Health Department. "We had people going to visit him, pouring their hearts out, but we're firefighters."
Henson, 57, lives with a genetic neurodegenerative disease that's already killed his father at age 53 and his brother at age 44. He also lives alone.
His disease affects muscle coordination and balance, and it's getting worse. He needs help standing, changing and eating. He's completely wheelchair bound and difficult to understand, since his disease also hinders his ability to speak and write.
Like many others with serious disabilities, Henson is unable to work and lives on a fixed income despite having a bachelor's degree in business and full cognitive function. He can't afford expensive in-home care or a facility that could more practically help with his needs other than a state-designated nursing home, which he detests. His mind is sharp, and he cherishes his independence. People close to him say that independence is his most prized possession.
So, he relies on the fire department.
He's called for help to the bathroom, when he dropped the remote control, when he needed the heat turned on and when he fell, which was often. And there are many others in similar situations.
Firefighters respond to almost all 911 calls. Increasingly - as the population ages - people turn to 911 for help with basic tasks such as getting down stairs, reaching a medicine bottle or turning on the lights.
The Chattanooga Fire Department received 1,320 "non-emergency citizen assist" calls last year. That's a more than threefold increase from 435 calls in 2013, according to department data. This year, there are even more calls.
Jonathon Wurth, the social services case manager at Mary Walker Towers, started working at the Chattanooga Housing Authority last July. Henson came on his radar in October when Wurth noticed he struggled to maneuver his motorized wheelchair from the elevator into the hallway. It got worse when the chair's joystick began malfunctioning.
"Mr. Henson started coming to me himself in November, usually to find out where his caregiver was. I called the employer of the caregiver several times over the next few weeks and found out that the caregiver came while Mr. Henson was out and, according to company policy, could not wait more than 20 minutes for Mr. Henson," Wurth wrote in an email. "It was during this time that I began to realize the seriousness of Mr. Henson's situation."
In December, he learned how often the fire department came to see Henson. That's when Wurth referred him to a program called Alexian Brothers PACE, which provides senior care, adult daycare, home health and geriatric medical services in Hamilton County.
"January was one of the more stressful months concerning Mr. Henson," Wurth said. "The Fire Department made frequent trips to Mr. Henson's apartment. While they happily helped Mr. Henson, I could tell they were frustrated that more services were not being provided to him."
That month, Henson was accepted into the PACE program. He also became the catalyst to bring the fire department and social service providers together in a call to action.
'Flipping a switch'
Henson's life looks much different today than in January.
Each morning during the week, driver Dewayne Benton arrives in an Alexian Brothers PACE bus outside Henson's new Boynton Terrace apartment. The unit is on the ground floor, unlike at Mary Walker, and was renovated with special accommodations, including a push-button door opener installed outside his door that makes the entryway more accessible.
Henson is able to traverse the path to Benton's pickup point in his new, fully functional wheelchair. Certified nursing assistants have already stopped by to get him up and dressed for his day, which he will spend at PACE's Day Center on the corner of East Third and North Holtzclaw.
There, he'll get breakfast, lunch and therapy. He'll also have access to a medical clinic with specialists, a fully stocked pharmacy and a dietician, all free of charge.
He has new clothes that fit, since he lost 60 pounds before coming to the program, and new shoes so his feet don't slip.
But perhaps most importantly, he has a multidisciplinary team of professionals dedicated to improving his health and well being, and he has camaraderie.
Terry Black, PACE's transportation coordinator, said Henson was skeptical when he entered the program, but Black took him under his wing. Because he wasn't able to navigate on his own yet, Black arranged one-on-one transportation for Henson to and from the center, which he handled personally in the evenings.
"He lived on the sixth floor of the Mary Walker Towers, so our issue was we couldn't just drop this man off and let him get back to his room," he said. "We'd take him home every day, roll him upstairs, get him situated."
During the days at PACE, Henson works with Elouise Busby, a physical therapist specially trained in geriatrics and neurodevelopment, to better coordinate his movement.
"Because of his ataxia, his trunk wants to push him out and he loses his balance," Busby said. "This carries over for when he has to push his chair. If his legs are not strapped, when he goes to push his chair his legs go out."
For now, they've rigged straps to secure his legs, but Henson is working on his strength and coordination in hopes of getting rid of them soon.
Much of the progress is due to his improved diet, which gives him the protein and nutrients to build his strength, registered dietitian Marybeth Allison said.
"When he got here, he was on a puree diet. That's what the last company that he was with recommended. He hated it," Allison said. But a puree diet was safest for him, since his inability to swallow combined with poor position in his wheelchair put Henson at high risk for choking.
With his weight down to a dangerous level, it looked like Henson would need a feeding tube, but he didn't want that, either. He survived on high-protein drinks and ice cream until he got a new chair and worked with speech and occupational therapists.
"We started off small and doing more handheld foods that he could feed himself, and he has graduated up to pretty much a regular diet at this point," Allison said. "He is determined to eat what he wants, so that makes a big difference, too."
Occupational therapists helped Henson position himself better in his new chair and gave him the tools to feed himself successfully, such as plates that stick on a table so they don't fall on the floor and sturdier utensils he can more easily grip. So far, he's gained 4 pounds.
They also modified his phone, lighting and TV remote for easier use. On the weekends, PACE sends a certified nursing assistant to care for Henson and take him out as much as possible.
His sister handles dinner and laundry, and he promised to work in partnership with his treatment team to wait out non-emergency issues, because he knows help is never far away. Black said it took time to build that level of trust.
"At first, he didn't really take to us a lot. I don't know what he thought. And then about four or five weeks later, he said, 'You're good for me,'" Black said. "That was the day he told the fireman he had PACE now."
One day before moving to Boynton, the lift machine on the van wasn't working when Black went to drop Henson off. He told Henson to head to the first floor elevator and wait while he fixed it.
"I got to the elevator, and Jeffery was nowhere to be found. I got to the sixth floor and now I see him. I said, how did you get up? And he smiled real big and said, 'Cause I did it myself,'" Black said.
Henson is now known across PACE for his infectious smile more than his 911 calls. He went from more than 90 EMS visits in January, to 15 visits in February and just one visit in May.
"It was like flipping a light switch," Phillips said.
Call to action
Henson's case prompted Phillips to reach out to the Chattanooga-Hamilton County Regional Health Council's senior health and aging committee. The group has worked with the fire department since January to connect more people to agencies better equipped to meet their needs.
"Getting the numbers reduced on our frequent callers is just a side effect. We want to get these people the help that they need so they don't have to rely on the Chattanooga Fire Department," Phillips said.
While they celebrate Henson's turnaround, many others still need help, and the need grows every day.
There were about 77,000 adults age 70 and older in Hamilton County and the 12 surrounding Tennessee and North Georgia counties in 2010. That number is on track to reach 114,000 by 2020 and 157,000 by 2030, according to a report from the Southeast Tennessee Development District.
Betsy McCright, executive director of the Chattanooga Housing Authority, said it can take a long time to find ideal housing situations like Henson's. He was on a waiting list for his unit, and the authority's senior housing should not be considered an alternative to assisted living or nursing home facilities, she said.
"As the population continues to age, we know that more individuals will need wrap-around services to keep them living independently," McCright wrote in an email.
Criss Grant, director of the Area Agency for Aging and Disability, said during June's senior health and aging committee meeting "the most frustrating part" of Henson's story is that no one from his former agency - a TennCare program called CHOICES - referred him to PACE. It was only when the housing authority case manager went out of his way to help that Henson got the care he needed.
"The only option that was given to this gentleman was nursing home or nothing," she said. "That's a huge flaw in the system that's got to be fixed."
PACE is a national model of care that's reimbursable through Medicare and Medicaid. That's because if someone can live independently, it costs the government less money than paying for a bed in a nursing home. PACE exists in 31 states, but in Tennessee is offered only in Hamilton County. Participants must meet strict guidelines to qualify, and there's no talk of expanding eligibility or creating sites in other parts of the state.
"To open it up to more people to meet that eligibility would be a very expensive endeavor for the state," Grant said.
Without help from above, the cost of caring for aging and disabled adults gets passed on to local communities. It costs the Chattanooga Fire Department on average $224 to respond to each call, and unlike an ambulance ride to the hospital that cost cannot be billed or reimbursed.
Some members of the health council's senior health and aging committee hope that stories such as Henson's will help policy makers see what happens when people fall through the cracks and what's possible when they get the care the need.
Rachel Tinaya, director of marketing at Alexian Brothers PACE, watched Henson's physical therapy session one afternoon in June. With his therapist holding a band around his waist for support, he stood and slid plastic rings over an arch from one side of a table to the other.
"I was fully expecting that activity to be from a seated position and just trunk strength," Tinaya said to Henson. "I can't believe you did that standing up."
Henson took a breath, pausing briefly before turning to face her.
"I can't believe it either," he said, flashing his now signature ear-to-ear smile.
Contact Elizabeth Fite at firstname.lastname@example.org or 423-757-6673.