Joe Chiavarone hesitates to use the words “personal training” when it comes to the one-on-one physical therapy his son Joey receives twice a week.
Joey, 45, was born with cerebral palsy with spastic quadriplegia, a condition that requires routine exercises to help him preserve his health. For years, a personal trainer has visited the Chiavarones’ Hamilton home to help Joey with his exercises, which reduce the spasticity in his muscles and improve his joint health. They also help open up his chest so he can breathe.
But Chiavarone and other local families say their access to such crucial services has been brought to an end thanks to a decision by the New Jersey Division of Developmental Disabilities to cut the service on a rolling basis. For example, someone who renewed benefits in August 2016 would lose the personal training benefit this month.
“This isn’t a training program for some superfluous reason,” Joe said. “This isn’t for someone that wants to work on their physique or curves. This is much more than that.”
Howard Schulze of Hometown Trainers, LLC, a Marlton-based in-home personal training company, said when his clients renvew their benefits for this year, personal training services like his will no longer be included as a benefit. And Chiavarone says like many families across New Jersey, he can not afford to pay for the in-home personal training. He says that he is living off of his social security and Joey receives disability, but it would not be enough to cover the two visits per week he requires.
“Until I retired, I never asked for a dime or service or anything from the DDD,” Chiaverone said. “When I became retired and with my wife’s health, that’s when we needed help.”
In the DDD’s revised support program policies and procedures released in April, personal training is a service no longer available to recipients. In the updated DDD explanation of benefits, gym memberships were available upon medical need, by prescription from a doctor.
However, the DDD, for its part, says that the outcry is just a misunderstanding caused by the division’s switch to a Medicaid-based system.
In a statement to the Post, the DDD said that personal training, in and of itself, is not an allowable Medicaid service. But many people have been using personal training—covered by the DDD—in place of physical and or occupational therapies, which were not previously available through the DDD. In the new system, PT, OT and more Medicaid-approved therapies are available.
The DDD says there are two options for a family that wants a personal trainer to come into their home to train their loved one. The first is to hire the trainer as a “self-directed employee,” using a budget allotted by the DDD.
The second option would be to convince the personal trainer to become a Medicaid-approved service provider. According to the DDD statement, if the personal trainer does personal training as well as activities related to assisting the individual with some type of habilitation—services that help an individual keep, learn, or improve skills and functioning for daily living—then the services that the trainer provides may fall within the definition of a Medicaid reimbursable service.
‘When you get older, you can’t do what you had to do before. This program is essential for us.’
The DDD suggested families discuss their concerns with their support coordinators or their case managers, and discuss what services would best meet their needs when the annual plan for their family member is developed.
But many of those family members are frustrated with the DDD, and feel left in the dark about the status of services that are essential to the health and well-being of their loved ones.
All of the families said they have not yet been officially contacted by the DDD to let them know that the personal training services were unavailable now, let alone the dates they could expect the services to cease. On May 1, around 50 people gathered in front of the DDD’s office on Commerce Way in Hamilton on May 1 to voice their displeasure. The peaceful protest was organized by Schulze.
“The DDD calls it personal training, and we kind of shy away from calling it that, because when people think of personal training, they think of a luxury,” Schultz said when he addressed the crowd that gathered for the protest. “This certainly is not a luxury for these people. These people need this service.”
Schulze says that his company provides one-on-one training to approximately 100 individuals with developmental disabilities all over New Jersey, accounting for more than half of his clientele. Schulze fears the outcome that cutting the program will have on his clients.
“Many of these clients will lose their functionality and regress or lose the gains that they’ve received from this program,” Schulze said in an interview with the Post.
Joey, and individuals like him, have lost the only physical activity currently available to them. Losing the training, Chiavarone said, will cause Joey’s health to deteriorate.
Joey is unable to stand up, move his arms or communicate more than a few words. Though he is bound to his wheelchair, Chiavarone explains that his son is perfectly aware of what is going on around him.
“It’s like he’s locked in his body,” Chiavarone said.
The spasticity that Joey experiences is painful, and without routine stretching of his joints and muscles, which Joey cannot perform on his own, the joints will become contracted, Chiavarone said.
Chiavarone is also part of a growing population of aging parents caring for their adult children with special needs. A retired radiation therapist, he is 68 years old and says he is in need of two shoulder replacements. Maria, his wife and Joey’s mother, was diagnosed with multiple sclerosis 25 years ago.
Maria has been Joey’s full-time caregiver since birth. Before Joey began working with Hometown Trainers three years ago, his parents did his range of motion exercises themselves in addition to providing for all of his daily needs.
“When you get older, you can’t do what you had to do before,” Chiavarone said. “This program is essential for us.”
The DDD stated that applicable recipients also would be eligible to receive integrated group exercise programs. Schulze says gym memberships and group programs may benefit some individuals, but can’t replace the one-on-one training for all of his clients.
Chiavarone scoffed at the group fitness benefit.
“What is my son going to do in a group? Watch?” Chiavarone asked.
In the past, Chiavarone has taken his son the RWJ Fitness and Wellness Center to stretch and exercise Joey in the pool, but says resources—such as additional help from staff to help Joey in the locker room and get him in and out of the pool—are not always available. Chiavarone said he needs someone strong to assist getting Joey pool-ready in the locker room, then help getting him into the pool and additional aid in the water for the exercises. He said help with these tasks has been inconsistent and they have not been able to find help in over a month.
For Hamilton resident Fran Koreyva, taking her daughter Karen to the gym will not be an option. Karen, 44, is mentally challenged with multiple handicaps. Koreyva is concerned that Karen will no longer receive the physical fitness she needs without in-home training.
“I could never take her to the gym and just leave her there, nor can I take her to a gym and know exactly what’s good for her,” Fran said.
Koreyva, who has been Karen’s primary caretaker since birth, is 81 years old. She says she is experiencing health issues of her own.
“I’m not as young as I used to be,” Koreyva said. “I can’t do the exercises I used to do with her.”
A gym can absolutely benefit some of these people, but there are many people that none of these services will benefit, Schulze said, who will fall through the cracks.
Schulze said that for individuals with disabilities, fitness centers can be overwhelming and unpredictable environments that can negatively affect people with specific conditions. People with intellectual disabilities, he said, thrive when they have routines.
Elaine Lyons said her son Sean, 24, will not be able to utilize the gym benefit because there are no gyms set up for individuals like her son. Sean, who is intellectually delayed and has seizures, has been utilizing in-home personal training since graduating from Mercer County Special Services High School. The Lyons live in Hamilton.
Lyons said that gyms lack the equipment and staff that would be required for Sean.
“He’s high functioning, although he doesn’t have a high attention span,” Lyons said. “He would need someone to work with him one on one, and they don’t have the staff.”
Lyons attended the protest on May 1, and has also been writing letters to the DDD and her local representatives with pleas to continue the in-home personal training benefit. She has reached out to friends, family and her pastor to write letters and urges the community to take part as well.
“I keep speaking out to hopefully get someone’s attention,” Lyons said. “I don’t know what else I can do.”
Chiavarone said that if the DDD would personally assess each individual currently who had been receiving in-home training, they would understand the need for one-on-one training.
“The DDD did not look at the family situation,” he said. “I don’t think they care about me and my wife because they are not pursuing the information.”
Koreyva is disappointed because without personal training, her daughter has one fewer activity that she can enjoy.
“She laughs and enjoys it,” Koreyva said. “That’s the main thing we want for our children—to laugh and be happy and well.”