After Serving, Handicapped Vets Suffer in Silence

  • Veteran Jessica Soule sits in her kitchen at her home in Grafton, N.H., on Jan. 25, 2017. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Veteran Jessica Soule, of Grafton, N.H., needs to use her walker to walk into her bathroom, her motorized chair would not fit through the doorway at her home on Jan. 25, 2017. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Veteran Jessica Soule, of Grafton, N.H, uses her computer with her cat Amber on her lap at her home on Jan. 25, 2017. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Veteran Jessica Soule at her home in Grafton, N.H., on Jan. 25, 2017. Soule is unable to access her upstairs bedroom without a chairlift. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Jessica Soule in a 1972 photograph in Cape May, N.J. (Family photograph)

Valley News Staff Writer
Sunday, February 05, 2017

Grafton — Jessica Soule makes do with what she has.

For example, consider the muddled heap of clothes on her bathroom floor, halfway between the door and the toilet.

It’s not there by accident.

“There’s a method to my madness,” the Vietnam-era Navy veteran said, sitting in her wheelchair just outside the bathroom. She pointed out how, less than a foot beyond the doorway into the small bathroom, the wall of the shower stuck out by a few inches, blocking her chair.

Because she can’t wheel herself into the bathroom, every time Soule needs to use the toilet, she gets up out of her wheelchair and walks to it, balancing precariously on legs as wobbly as a newborn fawn’s.

That explains the clothes, which act as a cushion between her failing body and the hard tile floor. She doesn’t have an accessible bathroom. But she has a pile of fabric. She makes do.

“It’s much easier, when I lose my balance, to fall on safe things,” she said.

Soule, 62, has been trying to get the Department of Veterans Affairs to renovate her bathroom by removing the obstruction, and installing a roll-in shower. But those aren’t her biggest problems, not when the teeth of winter are setting daggers of frost into every outside surface of her ramshackle house.

No, her biggest problem is being trapped in a bureaucratic nightmare she says left her without adequate heating for seven years, and prevents her from accessing her home’s second floor.

Soule says that, after her doctor at the VA Medical Center in White River Junction confirmed her need for a stair lift in 2008, VA staff told her the VA would install it for her.

She’s still waiting.

Years Without Heat

Soule has many complaints about her relationship with the VA. Each of the issues — access to medication, a transfer of services from White River Junction to Manchester, the suitability of a wheelchair ramp — is part of a larger, contentious narrative that dates back to at least 2005, the beginning of a nine-year legal battle in which Soule successfully sued the VA for $52,000 in retroactive benefits.

Wheelchair-bound and suffering from medical issues ranging from seizures to lupus, Soule was classified by the VA as “100 percent service-connected,” meaning she was disabled by an injury or illness incurred or aggravated during her military service, and that the disability prevents her from working.

Soule said that, during her term of service in a hospital from 1972 to 1973, she suffered a brain injury that triggered a seizure-causing condition to which her family is genetically predisposed.

About 15 percent of New Hampshire’s 113,000 veterans have a service-connected disability rating, and only a small fraction of them, roughly 800 veterans, have a disability rating of 70 percent or higher, like Soule.

“She’s one of the veterans that I’ve seen that’s been the worst off, for sure, health-wise,” said Brittany Demmons, a paralegal for Jackson and MacNichol, the Maine-based law firm that represented Soule in the 2005 suit. “She’s a very, very sick woman.”

Soule has family in the area, including three brothers. She said she tries to be a support to her elderly parents but that her mobility is so limited her contact is usually restricted to phone calls.

In early 2008, her legs weakening, Soule suffered a series of nasty falls down the steep stairs to the second floor of her home. The last one tore her bicep and the rotator cuff of her right shoulder, which caused her doctor at the VA to order her not to use the stairs anymore. That triggered a site visit to her Wild Meadow Road home, during which staff said they would initiate the installation of a stair glide and a roll-in shower.

While waiting, Soule slept on a hospital bed in her first-floor living room. Weeks became months. Then, in 2009, a worker from White River Junction-based Young’s Propane came to her home for a service call. When he saw her hospital bed, he said it was too close to her two first-floor propane heating units, and shut them off.

Jeffrey Cyr, chief inspector for the New Hampshire State Fire Marshal’s Office, said the state’s National Fire Protection Association building codes prohibit certain types of heaters from being located in bedrooms to prevent exposure to buildups of carbon monoxide.

“That’s the silent killer,” he said. “Any amount of gas while you’re sleeping could have catastrophic results.”

The first floor of Soule’s home has an unusual U-shaped layout, with no doors between the kitchen area and the living room. No matter where in the U she put the bed, she was in violation of the fire code.

“The technician ... was right to turn off the heating units, because her bed was in the same room as them and that is per code,” said Kate Stickel, a spokeswoman for AmeriGas, the parent company of Young’s Propane.

Soule has a basement furnace, but she said it wasn’t designed to heat the entire home, so she often was left chilled. And because the furnace was overworked, it suffered frequent, costly breakdowns.

Desperate, she began paying a neighbor $300 a month to come to her house every day and feed her woodstove. It was expensive, but warmed the house adequately and eased the burden on the furnace.

“I was told that a stair glide would be coming, so I didn’t really worry about it much,” she said. But eventually, the VA’s prosthetics department informed Soule that her doctor’s request for a stair lift had been denied.

“You have a bedroom and full bathroom on the first floor of your home,” reads the VA letter. “There is no need for a stair lift to the second floor if all your needs can be accommodated on the first floor.”

It also said “your concerns about the venting of your gas heater need to be discussed with your local gas company.”

Soule tried to purchase a stair lift from a Florida-based vendor. She says that, once a company representative learned she was 100 percent connected to her benefits, he told her federal regulations prevented him from doing the job, even if she paid for it herself.

“He said, ‘I can’t deal with you. Once you’re 100 percent, you’re the VA’s responsibility,’ ” she said.

Reduced to using her electric blanket and her six cats to keep warm, Soule tried to address the fire code by moving the hospital bed into a nook on the first floor. It was too small to hold the entire bed, but Soule made it work by removing the bed’s transfer bar. She also purchased a hard-wired carbon monoxide detector and installed it in the wall of the nook.

It didn’t work. Soule said a technician from Young’s Propane told her it was inadequate, and that her first-floor heaters could not be legally turned back on.

In 2014, in response to another stair lift request from Soule, a VA letter cited several reasons for denial, including that “stair glides are not approved if there is space on the main living floor that can be used as a bedroom.”

In January, after Young’s Propane received messages from the Valley News inquiring about Soule, a technician from Young’s who was there to service her furnace turned the units back on.

Stickel, the AmeriGas spokeswoman, returned the calls made to Young’s Propane and said the company had sent a district manager and a regional safety director to evaluate Soule’s home,

After their visit, Stickel said the company considers the nook to be a separate room, and that the units could remain on. Soule has lingering concerns about whether her bed’s location is actually safe, and would still like to be able to sleep in her upstairs bedroom rather than the nook.

On Thursday, Soule’s current doctor, Amy Schneider of New London Medical Group, wrote a letter in support of her patient.

“Soule needs a roll-in shower that will accommodate her wheelchair. This is necessary for basic health and safety issues,” Schneider wrote. “She also needs a stair glide to access her bedroom. This is needed because she is unable to use her heater if she sleeps downstairs because the bed is too close to the heater. This is a state law.”

Accessing Benefits

Veterans and the VA often clash over benefits, said Demmons, the paralegal, noting that the Maine law firm where she works currently is handling about 2,200 claims against the VA. She said the nine-year resolution time for Soule’s case wasn’t unusual; each claim takes an average of four or five years, while some have been in progress since the firm was founded 30 years ago.

“It’s quite disturbing to see the VA treat these veterans the way that they do. The veterans are in a very tough position,” she said.

Demmons attributed the large number of lawsuits to VA rules designed to prevent fraud.

“There’s a lot of frivolous claims out there, as well as legitimate claims,” Demmons said. “For the VA to really distinguish between the two, they’ve set forth so many of these regulations that it makes it a lot more difficult for veterans to get the benefits.”

Andy LaCasse, a spokesman for the White River Junction VA and a veteran himself, said he couldn’t discuss Soule’s specific case, but that the VA is proud of its track record of connecting veterans to adaptive technology.

“We’re not like a regular hospital,” LaCasse said. “They don’t say, ‘You’re in a wheelchair, so we’ll outfit your house for you.’ But we do that on a regular basis.”

The VA’s clinical patients who need an item like a wheelchair or an accessible shower can be eligible for special purpose funds which, once approved, can trigger a work order. Soule says that this process was initiated at the request of her doctor, but eventually was aborted.

LaCasse also cited the Home Improvement and Structural Alterations grant, a one-time federal disbursement of up to $6,800 for disabled veterans. The grant can’t be used for appliances like a stair glide. Soule said she considered applying for a roll-in shower on the first floor, but was advised by a VA manager to save it for anticipated repairs on a handicap-accessible vehicle.

Finally, LaCasse said, some veterans can access special adaptive grants on offer from the Veterans Benefits Administration, with awards of up to $70,000 for extensive home work. Soule said she got an application for such a grant last year, but that the VA hasn’t allowed her to easily access records she needs to fill it out. A patient advocate with ServiceLink, a state agency that helps people with disabilities, is scheduled to visit and help her fill out the form.

After a career as a mental health counselor, Soule said that, between her payments from the VA and her social security, she has a comfortable income of about $5,300 a month.

“I’m not in poverty. I’m not a charity case,” she said.

But she uses a good chunk of that money to pay for someone to come help her wash and do other household tasks, and for the man who stocks her woodstove every day. She said she’s also spent thousands on repairs to her heating systems.

Soule isn’t the only disabled person in need of adaptive technology.

Julia Freeman-Woolpert, outreach director for the Concord-based Disability Rights Center, said the nonprofit gets about 2,000 calls a year from people seeking help. Many of them are trying to get some sort of adaptive technology, like a wheelchair or a stair lift.

“A lot of folks with Medicaid, for instance, we get calls from people who have been denied the technology that they need,” she said.

Freeman-Woolpert said she encouraged veterans who, like Soule, might be having a hard time accessing benefits to call the center at 603-228-0432.

In the meantime, Soule said, she’ll stay in her home for as long as she can. She can’t get into the shower, so she uses a sponge to clean her body. She keeps the clothes heaped on the bathroom floor. She looks longingly at the stairs that lead to her bedroom, but doesn’t try to climb them.

“I make do with what I have,” Soule said. “I’m one of these people. I’m a survivor.”

Matt Hongoltz-Hetling can be reached at mhonghet@vnews.com or 603-727-3211.