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PVA From The Top - Protecting Specialized Care

Reprinted from PN/Paraplegia News May 2018

I implore you and our legislators to protect specialized services for all Paralyzed Veterans.

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Each March, Paralyzed Veterans of America (PVA) holds its annual Advocacy and Legislation Training Seminar in Washington, D.C. The highlight of the seminar is PVA’s opportunity to speak during a joint session of the House of Representatives and Senate Veterans’ Affairs committees. Like many national presidents before me, it’s an honor to represent paralyzed  veterans during this testimony. My written testimony, which is longer and more in- depth, can be found by visiting veterans.senate.gov. The following oral testimony I gave March 6 was written by me to convey to our congressional representatives the two most important topics currently affecting paralyzed veterans.

“Chairman [Johnny] Isakson (R-Ga.), Chairman [Phil] Roe (R-Tenn.) and members of the committee, I appreciate the opportunity to speak on behalf of thousands of Paralyzed Veterans around the country. Right now, advocates from our 33 chapters are in Arlington, Virginia, learning about the latest issues affecting Paralyzed Veterans and will be addressing these issues with our congressional representatives this week. This testimony is streaming live to them as I speak. With all of the legislative priorities we have entered into the record, two stand out to our members, who are veterans with spinal-cord injury or disease. First, the protection of VA (Department of Veterans Affairs) Specialized System of Care — especially the spinal-cord injury hub and spoke system, which is the best care Paralyzed Veterans can receive anywhere. The fact is community care for someone with a spinal-cord injury or disease pales in comparison.

“I personally experienced these challenges. This was magnified to me on three separate emergency room visits in the community during the last eight years and on a recent trip to check on the welfare of our members in Puerto Rico this past December that included myself and staff from PVA. Post-Hurricane Maria, we found out the spinal-cord injury (SCI) unit in conjunction with VA staff in San Juan, national PVA staff and local chapter representatives were the only entities to reach out to our Paralyzed Veterans nearly three months after Hurricane Maria. Members looked me in the eye and said that if it not been for the VA and SCI unit coordinating and providing care to many Paralyzed Veterans, they would be either dead or forced to leave for VA SCI centers in Florida. Paralyzed Veterans told us that post-hurricane community care was nonexistent and limited to FEMA (Federal Emergency Management Agency) care that had no knowledge of how to specifically treat someone with a spinal-cord injury or disease. After talking with these Puerto Rico Paralyzed Veterans about the community-based care they received before and after Hurricane Maria, my experience with community care and countless Paralyzed Veterans across America, there were three important examples of what the VA gets right and community-based care does not when it comes to spinal-cord injury and disease:

1. The VA speaks the language of a veteran. Community-based care does not.

2. The VA has a deep knowledge base of SCI, MS (multiple sclerosis) and ALS (amyotrophic lateral sclerosis). Community-based care is shallow at best in their knowledge.

3. The VA has a great understanding of PTSD (post-traumatic stress disorder) and TBI (traumatic brain injury). Community-based care is minimal at best.

“These three examples are the prime reasons why Paralyzed Veterans seek care at the VA versus in the private sector. I implore you and our legislators to protect specialized services for all Paralyzed Veterans. It is literally a matter of life or death to us. The second priority is expanding the eligibility for VA caregiver support services. The current program supports veterans injured after 9/11 but not veterans from other eras. Right now, a majority of Paralyzed Veterans are being denied this support based on an arbitrary date and perceived expanded costs. What is not factored in is the long-term savings when Paralyzed Veterans are not in hospital beds, driving up hours for nursing and care related to their initial injury or diagnosis. There are many pre-9/11 Paralyzed Veterans who, as they age or deal with their post-rehab life, find it very difficult to maintain their health without a caregiver. They seek out VA or nursing home care that is expensive and demoralizing versus [having] a caregiver and being able to live at home. Paralyzed Veterans understand the importance of caregivers more than any other cohort of veterans. This week, I am confident our advocates will be able to explain just how important caregivers are to our community and how the cost to expand this program will save countless hours in the VA for care and dollars for years to come.

“Committee members, I feel that a serious focus and efforts to address these two priorities will boost the morale and confidence for the future of our Paralyzed Veterans for many years to come. We call on you to take all steps necessary to ensure that the specialized services that our members rely on are preserved and strengthened as you debate more care in the community. There are also no more excuses available to deny access to the caregiver program to veterans of all eras. Our members and thousands of other veterans will hold you accountable if you fail to do what everyone in this room and people around the country know is right. On behalf of Paralyzed Veterans of America, I thank you for your time and will answer any questions you have.” 

 

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PVA From The Top - Protecting Specialized Care

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