“We also provide our expertise to the DOD [Department of Defense] for their research program grants for spinal injuries. And we have reviewed grant applications that did result in millions of dollars. And we have a legislative advocacy department that will lobby for certain bills to be passed. One of those did involve DOD making access to exoskeletons available to veterans. But the VA [Department of Veterans Affairs] also has to hire and train people to work with and on exoskeletons. I think all these technologies merit consideration and veterans should be able to choose among them to see what is the best fit for them.”
Paralyzed Veterans also takes a more direct role in helping its members, with a team of nurses and a clinician who make site visits at all 25 centers in the United States. A member of its grant review committee for research and education, for example, is a paralyzed veteran who is working as a research engineer at a lab at the University of Pennsylvania looking at a wheelchair that reduces strain on the user’s arms. Gillums said they also occasionally have an opportunity to be more intimately involved in research from a consumer education perspective, making themselves available as consumers to help close the gap between a good idea and practicality.
Paralyzed Veterans helped form a committee with three other VSOs – Disabled American Veterans (DAV), American Veterans (AMVETS), and Veterans of Foreign Wars (VFW) – to create their own annual VA budget proposal for Congress, with additional input from a long list of contributors with a stake in veterans advocacy.
“If I had to rank concerns, I would say No. 1 is access to quality health care. The VA has 110 hospitals and thousands of caregivers, all of whom have been tainted by those that became involved in scandals. Our goal is to ensure future paralyzed veterans have access to the care they need. That’s the basic lower order need that has to be in place for any of the other benefits to matter.
“Second would be a cross of independence and opportunity. Our advocacy efforts include barrier-free designs, educating employers with our Paving Access for Veterans Employment [PAVE] program. PAVE has two parts – first prepping the veteran for the right opportunity for him or her, the other part is taking the mystery out of hiring a disabled veteran by offering ways to make the workplace more accessible, getting over the stigma that disabled workers are likely to be the next lawsuit they have to worry about.
“Third is benefits and entitlements, not just for veterans but also dependents, caregivers, and survivors. Veterans earn their benefits – not just disability compensation, but vehicle grants to enable them to drive, home modifications, education grants, etc. We’re constantly advocating that veterans [benefits] be delivered faster and more accurately and any appeals are decided more fairly and quickly. We represent more than 40,000 people with powers of attorney; the most complex disability claims tend to end up with us because of our history and expertise. We’re the SMEs [subject matter experts] on that front.”
Paralyzed Veterans helped form a committee with three other VSOs – Disabled American Veterans (DAV), American Veterans (AMVETS), and Veterans of Foreign Wars (VFW) – to create their own annual VA budget proposal for Congress, with additional input from a long list of contributors with a stake in veterans advocacy. DAV represents service-connected veterans, AMVETS veterans of combat service, and the VFW those who served overseas, whether in combat or not.
“So it’s a good mix of interests that combine into a single voice. Some of those overlap – you could have a veteran who belongs to all four – but we are the voice for veterans with non-service connected injuries. And about 100 percent of our members rely on VA health care, which is higher than the other VSOs’ members,” Gillums said. “The document presents what we believe, based on empirical and anecdotal data and what we get from the VA, is the right budget to meet the full demand.
“We take great pride in the fact we are distinguished as disability advocates. We were at the table when the Americans with Disabilities Act [ADA] was put together and ratified 25 years ago.”
“What often happens is the Congress and president will consider what we present, but run their own numbers and often end up with numbers a lot lower than ours. A lot of the shortfall we see now with the VA can be associated with the difference between our budgets and their budgets. A good example is in construction, where there was a $10 million gap. And that is cumulative, as those gaps repeat year after year. The whole purpose is to provide the most honest and objective view of what the VA budget needs to be to serve the veterans who need them.”
But Gillums points out Paralyzed Veterans has expanded its efforts beyond just veterans to the wide range of disabilities, regardless of cause or victim.
“We take great pride in the fact we are distinguished as disability advocates. We were at the table when the Americans with Disabilities Act [ADA] was put together and ratified 25 years ago. We’re also a part of the effort to expand the standards outlined in the ADA to the entire globe. There is a lot of opposition to that, but is a big part of our advocacy that has nothing to do with veterans, but making things better for anyone who has an impairment or disability,” he said.
“Attitudes are changing in other countries, both governments and societies. It may take awhile, but at least countries such as South Korea – which opened two spinal cord injury centers in the last two years and has invited us to look at those centers for veterans – recognize it is an issue, and changes are being made that will help the next generation.”
This article was first published in The Year in Veterans Affairs & Military Medicine 2015-2015 Edition.