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A Community of Care

Reprinted from PN November 2016

Networking, robots and the importance of VA spinal-cord injury/disease care were all part of this year's annual PVA Summit + Expo

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It was fitting the 2016 Paralyzed Veterans of America (PVA) Summit + Expo was held in Orlando, Fla., just minutes from two theme parks, Disney World and SeaWorld, where families go to spend time together.

That feeling of family and team effort resonated as clinicians, researchers, psychologists, caregivers, social workers and more from the Department of Veterans Affairs (VA) and private institutions across the country gathered Aug. 30–Sept. 1 for the sixth annual conference. 

The three-day conference was packed with more than 50 plenary and breakout sessions designed to explain new research studies and share best practices across multiple disciplines, as well as showcase technology for people with spinal-cord injury or disease (SCI/D). 

The summit is an opportunity for clinicians to hear about PVA leaders’ priorities and earn continuing education credits, but it’s also a time to focus on their shared goal: providing the best care possible for those with SCI/D. To attendees, patients become much more than a job. They become family.

Connections

A record 840 attendees heard presentations on topics dealing with current innovations and how to address the issues people with SCI/D, traumatic brain injury and post-traumatic stress disorder face on a daily basis. 

For first-time attendee Candice Belcourt, a recreational therapist at St. Luke’s Rehabilitation Institute in Spokane, Wash., the summit gives her a way to connect to veteran patients, who are huge advocates in her profession. Belcourt believes the biggest issue facing people with SCI/D is lack of trained personnel.

“[There is a] lack of awareness for non-SCI-specific medical personnel, so in turn their [veterans’] care is delayed because of lack of trained individuals and access to those. And overall the insurance issue is a common theme across the board,” Belcourt says.

Lana McKenzie, PVA’s associate executive director of medical services, health policy and research, says that type of training is especially important for veterans with multiple sclerosis (MS), and the summit helps improve their care.  

“Our members with MS have similar symptoms like a spinal-cord patient has when they begin the loss of use of bowel and bladder and mobility, and there isn’t a better group of experts who can handle this type of need better than spinal-cord injury clinicians,” McKenzie says. “We thought the best thing to do was to marry two subset specialties by promoting education and networking. That’s why our summit offers something no other conferences have done.”

Working With Robots 

Among all of the emerging research studies impacting people with SCI/D, one area that has seen major advancements is assistive technology.

Rory Cooper, PhD, director of the University of Pittsburgh’s Human Engineering Research Laboratories (HERL), led the way with his plenary session on assistive robotics.

“For years I would hear, ‘This work in robotics, why do people do that? We’re never going to see robotics used in a clinic or people’s homes,’ and now in 2016, there are robots … the world’s changing,” Cooper says.

Three innovations featured during the expo this year were products his team at HERL (herl.pitt.edu) helped research, engineer and bring to the market: Kinova Robotics’ robot arms, Next Health lift-free bed transfer system and the Permobil virtual seating coach.

“We identify a need, so we’re not just creating things,” Cooper says. “We find good commercial partners. It might not end up the same as we imagined it, but it’s the same software and same algorithms.”


Lana McKenzie was presented with the first Homer S. Townsend Jr. Excellence in Professional Advocacy Award. Photo by Brittany Martin.

Cooper spoke in depth about HERL’s current projects, including a Personal Mobility Manipulation Appliance, a power wheelchair-based system that uses a person’s voice or tablet computer to control robotic arms.

Going a step further, engineers are developing a tool that would quantify how easily different robots help a patient perform various tasks, from simple object manipulation to driving and cooking.

One emerging technology that elicited a chorus of “oohs” from the audience was the world’s first Mobility Enhancement Robotic Wheelchair (MEBot), a self-balancing power wheelchair that combines eye-level technology with curb- and stair-climbing capabilities.

Lisa Ottomanelli, PhD, works at the James A. Haley Veterans’ Hospital in Tampa, Fla. She believes these types of technologies can be beneficial in a wide variety of settings, including in her research in veterans’ employment.

“I sit in these sessions and think, ‘Is this going to help someone out in the community?’” Ottomanelli says. “One video was of a lady buying groceries at a grocery store. How about if someone wants to work at a grocery store? Would that help them? Where can my veterans use this?”

McKenzie says while robots can’t replace the human touch, their potential for veterans with SCI/D is huge.

“They can be very useful for people who want to maintain the dignity of an independent life,” McKenzie says. “I see more and more gearing toward what Dr. Cooper’s lab is doing because it’s an instant effect, it’s a realistic approach, versus someday you’ll find a cure.”

Preaching To The Choir

In addition to hearing from researchers and collaborating with colleagues, attendees also heard from David Shulkin, MD, the VA undersecretary of health, who returned to the dais for his second year as keynote speaker.

Shulkin’s speech followed impassioned opening remarks about the importance of VA health care from PVA Executive Director Sherman Gillums Jr., who received a standing ovation (read the full text of Gillums’ speech on page 26).

When Shulkin took the stage, he thanked Gillums for his candor, saying it’s PVA’s brand of advocacy that makes the organization a great partner for the VA, “though partners don’t always agree.”

With a vast majority of summit attendees being employed by the VA, Shulkin admits he was “preaching to the choir” when PVA National Secretary Larry Dodson asked how Shulkin would convince Congress to fund the needed changes in the VA.

“All of you are the ambassadors to the VA … people are likely to ask you, ‘So the stuff we hear, the stuff in the newspapers, is that really what’s going on?’ And you need to be educated and you need to know about the things we’re doing,” Shulkin says. “We are not a perfect system … but we are committed to getting better, to doing more, so it’s important that we get the accurate information
out there.”

Ottomanelli says Shulkin’s words struck a chord with her.

“We need to know not just what we’re doing that’s good, but collectively, and then be able to be ambassadors for that,” she says. “I wish there was a way the mainstream media would pick up those stories, because people don’t hear about them.”

Overall, the message of the summit was clear: There is hope for veterans with SCI/D, McKenzie says.

“There are still people interested in finding a cure. There are people passionate about learning best practices. Hopefully, they can go back and use those practices at the bedside,” McKenzie says. “There’s a community who care and coordinate the care for MS, ALS and spinal-cord injury patients. It’s a very complex topic, and if you have a good group of people who want to better the care, what else can you ask for?”

The 2017 PVA Summit + Expo is set for the Gaylord National Resort & Convention Center in the Washington, D.C., area. For more information, visit pva.org.  n

Screaming To Be Heard

Paralyzed Veterans of America (PVA) Executive Director Sherman Gillums Jr., received praise and a standing ovation for his remarks about the Department of Veterans Affairs (VA) health care system during PVA’s annual Summit + Expo in Orlando, Fla., in late August.

Gillums spoke to the more than 800 attendees not from his perspective as the head of a national veterans service organization, but as a paralyzed veteran, who relies on the VA spinal-cord injury (SCI) and disease system of care. In his remarks, Gillums stated: 

“… Today I’m speaking for the men and women who have no voice but scream in vain to be heard. [These] will be candid reflections as we sit here facing uncertainty about the future of a system of care that unites us here at the health summit.

“When it comes to veterans, here’s the question we should be asking ourselves where the government is concerned: Who are the beneficiaries of the sacrifices that servicemembers make when they volunteer to defend the country, as they return from combat with severe wounds both visible and invisible? Whether injured during or after service? As they face suicide, stigmatization, and increasing cynicism and apathy?

 “The beneficiaries of that risk and sacrifice were you, taxpaying citizens. It is the taxpayers who are responsible for ensuring our government meets its obligations. This includes the obligation to care for the 22 million veterans who live in the U.S. today, 9 million of whom are enrolled in VA health care.

“So when I hear talk of privatizing VA health care, the first thing I think about is that obligation and whether one can outsource the responsibilities that come with the benefit of being free and protected at virtually little cost to most of society. A privatized health care system will not be subject to Title 38 protections, such as due process for veterans in clinical appeals and medical malpractice cases, regulatory oversight by Congress, and accredited representation by veteran service organizations. These all go away in a
privatized system.

 “Privatizing VA is the opposite of choice. Instead of ‘Choice Care’ it should be called ‘Chance Care,’ because that’s exactly what it will be: fragmented, less coordinated, non-veteran centric — yet convenient.

“Last year, SCI nurses performed more than 105,000 hours of overtime due to turnover and understaffing because staffing models lagged behind patient need by about 15 years. The uniquely complex and taxing nature of spinal-cord injury bedside care is different from urgent care, ICU [intensive care unit] and other specialities because aging paralyzed veterans have complex, individualized medical needs, and rely on coordinated multidisciplinary services to address their problems. Patient need went up as staffing plateaued.

 “Yet, I still get asked by senior VA leaders, ‘But what about all the empty beds? Can you prove this unmet demand or long wait times?’ Those of you in the field, who touch the patients and directly administer the care know the answer. Empty beds at spinal-cord injury centers are not due to a lack of demand. Empty beds are due to a lack of staff to operate those beds once the census gets capped at your facilities. This is precisely why average daily census does not tell the whole story and cannot be a factor in future staffing models.

“Here’s the inescapable reality: There are an estimated 42,000 veterans with SCI in the U.S., 26,000 of which are eligible for VA care, but only 12,000 are receiving specialized care. That doesn’t include those with spinal-cord diseases. Our members aren’t simply opting to go somewhere else for care, or deciding they don’t need comprehensive exams or specialized acute care. They’re either waiting to get in, are uninformed about their VA option, underestimate the importance of specialized preventative care or have decided the fight isn’t worth it and simply have settled for less.

“While I argue that the VA is the best and only option, it comes with a duty on your part as spinal-cord injury and disease professionals as well. A duty to, in fact, reflect the excellence that Paralyzed Veterans [PVA] talks about when defending the SCI system of care, starting at the top … to bring stability to the service line, to champion the highest standards in accordance with VHA policy and to advocate for badly needed resources.

[A few last points in closing…] 

“Staffing to the minimum number required is wrong. It’s your job to ensure your centers are staffed to meet actual demand, the real demand, which includes those to whom you need to reach out and educate on available services and the benefits of annual exam.

“Debate will continue on how we can best improve the access to and quality of VA health care, mostly between people who don’t use VA, work in VA, or rely on it for health care. Some have made it their mission to eradicate VA health care in the name of ideology and potential profits. They claim VA is a failed enterprise and are doing anything and everything to bring about its demise .... they talk about privatizing VA without discussing a viable alternative for SCI care once VA disappears, without discussing the consequences of removing Title 38 protections for veterans who won’t have those protections in the private sector, without discussing Congress diminished oversight role as private sector providers operate with relative impunity.

“I urge you not to reinforce their cynicism by taking the path of least resistance ... The paralyzed veterans you care for aren’t nameless, faceless statistics ... They are human beings. They are the reason you have a purpose. The reason Paralyzed Veterans of America will stand our ground.

 “Thank you, all of you in the trenches, who get your hands dirty and do the grunt work. No matter how thankless it seems or how isolated you feel, I’m here to assure you, it matters.”  

 

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