March Washington Update

March 17, 2017                                                                Volume 23, No. 3

***PRIORITY***

The Government Relations staff is still looking for stories about problems that our members have experienced during air travel. Please visit www.AirAccess30.org and share your story.

PVA Annual Advocacy and Legislation Seminar

The PVA Government Relations Department held its annual Advocacy and Legislation Seminar, from March 6-9, 2017, in Washington, D.C. The seminar serves as an opportunity to bring in representatives from every PVA chapter to Washington to learn about the policy priorities of the organization and then to carry that message to their representatives and senators in Congress.

This year’s seminar focused on two main areas. The Advocacy portion discussed in great detail our continued efforts, and the work we have ahead of us, on the Air Carrier Access Act, and efforts to improve air travel for people with disabilities. A panel of experts we have worked with on this issue included representatives from the Department of Transportation, Virgin America Airlines, and the Flight Attendants Association. Government Relations’ Advocacy staff also discussed entitlement reform, specifically Social Security, Medicare and Medicaid, as well efforts to undermine the Americans with Disabilities Act (ADA) known as ADA notification.

The Legislative portion of the seminar focused significant attention on the delivery of veterans’ health care, particularly in the area of specialized services such as spinal cord injury and disease (SCI/D) care. Attendees had the opportunity to hear from Dr. Manosha Wickremasinghe, the incoming Executive Director of the Spinal Cord Injury/Disease Service at the Department of Veterans Affairs (VA). There were several discussions about the many ideas being proposed for VA health care in the future and how that might impact SCI/D care. Government Relations’ Legislative staff also discussed appeals reform as well as the expansion of the Comprehensive Family Caregiver Program at VA.

PVA members then spent two days storming the halls of Congress to discuss our policy priorities. In addition to our members meeting with members of the House and Senate, on March 9, PVA National President Al Kovach, Jr. presented his annual testimony before a joint hearing of the House and Senate Committees on Veterans’ Affairs.

He emphasized the importance of VA health care to him personally following his injury. The seminar wrapped up with a Congressional reception that evening to allow PVA members to continue to interact with congressional staff from both the House and Senate.

This year’s seminar was a major success. National staff has already begun outreach to offices that have expressed an interest in advancing our priorities. We were also able to increase digital engagement with the organization and we leveraged the PVA app to communicate much of our information quickly and effectively. The inclusion of state-specific information on the VA’s SCI/D service proved very useful in our members’ meetings with their representatives and senators. We are already beginning our planning for the 2018 Advocacy and Legislation Seminar.

House Committee on Veterans’ Affairs Holds Hearing on

Community Care

On March 7, 2017, the House Committee on Veterans’ Affairs (HVAC) held a hearing entitled, “Shaping the Future: Consolidating and Improving VA Community Care.” With the Choice program set to expire on August 7, 2017, HVAC Chairman Phil Roe (R-TN) sponsored a bill, H.R. 369, which would eliminate the mandatory expiration date for the program, allowing it to continue to deliver health care services to veterans in the community and use up the remaining funds in the program. New funds will eventually be needed, though, and with that request a much-needed revamp of the Choice program – Choice 2.0 as Secretary Shulkin called it during the hearing.

During the hearing, Secretary Shulkin made a number of commitments indicating a continued preference of strengthening the VA health care system’s ability to deliver direct care and developing an integrated network of providers to help fill gaps in service throughout the country. Over the last two years, much controversy has surrounded the issue of granting veterans unfettered choice of where they receive care. This proposal has proven cost-prohibitive. As a result, the administration, VA and other stakeholders are coalescing around the idea of fitting greater expansion of veterans’ choice into a consolidated community care program that utilizes an integrated network of providers.

In a markup the day after the Choice hearing, the Committee added two provisions to H.R. 369 that would give VA the ability to become the primary payer as well as share certain limited patient information with community care doctors treating veterans without seeking the veteran’s affirmative consent. VA has long asked for these provisions since putting forth its community care consolidation plan back in October 2015. VA serving as primary payer will hopefully alleviate the many instances where community care providers turn medical bills over to the veteran when VA takes too long to pay for services.

The hearing also drew two major announcements from the Secretary, one of which received a standing ovation. The first is that VA plans to get away from developing its own IT solutions and start purchasing more commercial off-the-shelf products. The second, and perhaps even more substantial announcement, was that VA will begin offering mental health care services to veterans who received an other-than-honorable discharge from the military. The logistics, timeframe and other eligibility details were not discussed, but VA’s decision to not wait for Congress to force the issue through legislation drew significant praise from the Committee.

PVA Presents Senator Patty Murray (D-WA) the 2017 Gordon H. Mansfield Congressional Leadership Award

On March 9, 2016, Paralyzed Veterans of America honored Senator Patty Murray (D-WA) with the 2017 Gordon H. Mansfield Congressional Leadership Award. Senator Murray and her staff have worked tirelessly with PVA’s Government Relations staff to advance and see implemented the legislation that enables VA to provide in vitro fertilization (IVF) to eligible veterans and their spouses. These long-awaited procreative services finally became available to veterans on January 19 of this year, and are approved through September 30, 2018.

Senator Murray has been a champion of IVF for veterans for years. Yet her persistence that Congress do the right thing never wavered. She continues to lead the effort to see that IVF become a permanent benefit.

The Gordon H. Mansfield Congressional Leadership Award is named for the Honorable Gordon Mansfield, former Acting Secretary of the Department of Veterans Affairs and Executive Director of Paralyzed Veterans. The award reflects upon his services as the former Assistant Secretary for Congressional and Legislative Affairs at the VA, and Paralyzed Veterans’ first associate executive director of government relations. The late Mr. Mansfield was a combat-injured Vietnam veteran who was awarded the Distinguished Service Cross.

Senator Murray was notified of the award earlier this year, and was presented with it March 9th at a private meeting during Paralyzed Veterans of America’s annual Advocacy/Legislation Week. The Senator issued the following statement of recognition: “Military families sacrifice so much on our behalf, and they deserve to know their country will be there for them, no matter what. Making sure veterans and their spouses have access to reproductive assistance is just one way we can fulfill that promise, and I couldn’t be more proud to have Paralyzed Veterans of America by my side as we work together to make sure we are doing everything we can for the men and women who sacrifice so much in their service to our country.”

Caregiver Expansion Bill Introduced

On March 9, 2016, Senator Patty Murray (D-WA) introduced S. 591 and Rep. Jim Langevin (D-RI) introduced the house companion bill, H.R. 1472, the “Military and Veteran Caregiver Services Improvement Act.” This bipartisan legislation would expand VA’s Comprehensive Family Caregiver Program to veterans of all eras. Currently, a veteran has to have been severely injured on or after September 11, 2001 in order to be eligible. Expansion would make available the resources that caregivers need to provide quality care to veterans. These resources include a monthly stipend based on the hours of care provided, healthcare through CHAMPVA, respite care, and additional training among other services.

Caregivers play the most critical role in the wellbeing of a catastrophically disabled veteran. From activities of daily living, to psycho-social interaction, to maintaining good health that prevents institutional care- these caregivers have been sacrificing their own financial and physical wellbeing to care for veterans, with little to no support from VA. Congress has no justification for denying access to pre-9/11 veterans. This legislation would rectify this inequity.

Among other things, the Military and Veteran Caregiver Services Improvement Act would:

  • Make the program more inclusive of mental health injuries.
  • Reauthorize the Lifespan Respite Care Act and expand essential respite options for caregivers.
  • Give veterans the opportunity to transfer GI Bill benefits to a dependent, to help unemployed or underemployed spouses of injured veterans prepare to become the primary income for the family.
  • Make caregivers who work in the federal government eligible for flexible work schedules.
  • Provide assistance with childcare, financial advice and legal counseling, which are all top, and currently unmet, needs.

We urge all PVA members to contact their senators and ask them to support S. 591 and contact their representatives and ask them to support H.R. 1472. These bills will have a significant impact on our members, many of whom rely upon caregivers on a daily basis.

PVA Prosthetics Consultant Participates in Brain Awareness

Week Program

The National Museum of Health and Medicine hosted its 18th annual Brain Awareness Week (BAW) program March 13 -17, 2017. The museum wanted to showcase the DEKA Robotic Arm in an exhibit called “Advances in Military Medicine”. Fred Downs, PVA Prosthetics Consultant, provided live demonstrations of the DEKA Robotic Arm to the students. Mr. Downs described how he dons the arm, and demonstrated how he controlled the arm and hand with movements of his feet to which inertial measurement units (IMU) are attached. The IMUs send wireless signals to 10 computers in the arm that move the elbow and hand into different positions and grips. He uses the various functions they perform to increase his independence.

During BAW, the Museum invites middle school students to visit the museum to learn about neuroscience from a variety of professionals through hands-on interactions. The museum will host about 120 students per day (60 in a morning session and 60 in an afternoon session) who rotate through 5-6 activity stations for about 15 minutes per station. The goal is to provide an opportunity to use STEAM (science, technology, engineering, art and math) to inspire students to pursue studies and careers in the sciences.

The museum has both DOD and civilian partners who help share excitement about the neurosciences with the students to include the Walter Reed National Military Medical Center Speech and Audiology Clinics, Defense and Veterans Brain Injury Center, Uniformed Services University, Society for Neuroscience, Howard University, Rutgers, Congressionally Directed Medical Research Programs, and NIH. These BAW partners are engaged in some of the most cutting edge brain science research in the country. Brain Awareness Week at the National Museum of Health and Medicine highlights that research and promotes the field as a career option.

DOT Delays Implementation of Final Rule Requiring US Airlines

to Report Wheelchair Data

On March 2, 2017, the Department of Transportation (DOT) announced that it will delay the implementation by one-year of the final rule requiring large domestic airlines to track and report information about wheelchairs and scooters. The rule was published on November 2, 2016, and went into effect on December 2, 2016.

As originally published, airlines would be required to provide DOT with information on the total number of wheelchairs and scooters they enplane on a monthly basis for flights taking place on or after January 1, 2018. Airlines would also need to report how many of those wheelchairs and scooters were “mishandled.” The new date for implementation announced by DOT is January 1, 2019.

DOT took this action in response to a request from airlines to delay the implementation of the regulation in the spirit of a memorandum issued by the White House Chief of Staff on January 20. In part, the memorandum directed agencies to delay for 60 days the effective date of published regulations that had not yet taken effect.

PVA believes that delaying the reporting requirement for wheelchair and scooter data in the spirit of this memorandum was an overly broad interpretation of its application. The regulation had already been in effect for nearly 90 days when DOT announced its intent to delay implementation. Furthermore, DOT took this action without providing all stakeholders with a formal opportunity to comment.

PVA has communicated our concerns about the delay publicly and directly to DOT. We will continue to closely follow this matter. At this time, the delay has not been published in the Federal Register.

PVA Trains Wheelchair Attendants for Virgin America Airlines

On March 8, 2017, Senior Associate Advocacy Director Lee Page and Heather Ansley, Associate General Counsel for Corporate and Government Relations, met with representatives from Virgin America Airlines at Reagan National Airport (DCA) in Washington, D.C. The meeting was at Virgin’s request so we could facilitate a discussion around the boarding process and demonstrate proper technics for transfers in and out of an aisle chair. Virgin America contracts with Huntleigh USA Corp. at Reagan National for wheelchair assistance to assist passengers with disabilities in boarding and deplaning as part of their responsibility under the Air Carrier Access Act (ACAA).

After introductions, Mr. Page and Ms. Ansley thoroughly explained the ACAA as well as the legal responsibilities of the airline, Virgin America and their contractor Huntleigh, for what services are required to be provided to qualified passengers with disabilities. Mr. Page with the assistance of Huntleigh personnel demonstrated proper transfer technics on and off an aisle chair that was provided. Whereas Huntleigh personnel knew what to do in the transfers, Mr. Page emphasized that they need to take direction from the passenger with the disability;

The discussion lasted about two hours and there were around 25 participants from Virgin America, Huntleigh and a few representatives of Alaska Airlines, which is buying Virgin America. PVA will continue to work with Virgin America and Alaska Airlines to create future opportunities to educate personnel on the specific needs of passengers with disabilities.

Multiple Sclerosis – Multiple Scars

What’s wrong with this guy? Those were the words I heard sarcastically uttered behind me as I rose when my name was called to board my boat at the first Citrus Slam Bass tournament. It would have been my last if I hadn’t already paid for the first annual KIPVA Bass tournament the following week. I let a faceless jerk keep me from attending any further tournaments. You see, I have Multiple Sclerosis and by the grace of god and $30,000 worth of daily injections each year, I can still walk. I don’t have four wheels that can be worn as a badge denoting that I belong in the PVA. My badges are worn on the inside in the form of demyeli nation scars. I am sure many of my MS and ALS brethren can relate to that statement. What is MS anyway? Multiple Sclerosis is an Auto-Immune Disorder a spinal cord disease SCD, if you will. The body’s immune system attacks itself by destroying the fatty layer that wraps the nerve. This layer is called Myelin, think of stripping the plastic coating off a piece of electrical wire. Like electrical wire, when this happens and the wire or nerve is compromised, shorts happen. Every person with MS is different; it all depends on where the disease activity is on the brain, spinal cord, or both. I have multiple scars on my brain, three on my spinal cord, and damage on my optic nerve. The results of these “shorts” are spasticity in my legs, loss of cognitive function,
loss of short-term memory, gait disturbance, crushing fatigue, left-side weakness and double-vision to name a few. The optic nerve damage is what worries me the most. I have lost about 40% of the vision in my right eye and have to wear glasses with prisms cut into them to counter the double vision. I am still upright and motoring, so no complaints. There is no cure at this time for MS. They have to first figure out what the heck causes it. There
are Disease Modifying Therapies on the market though. They work by slowing the disease’s disability progression, and come in injectable and oral forms. You and your doctor just have to find the one that works best for you. If you are not currently taking a DMT, I and I am sure your doctor, highly recommend it. Don’t let the disease run its course, be the fighting man or woman you are and fight back. That brings me back to why I am writing this article, don’t let feelings of “I really don’t belong here” keep you from participating in the KIPVA. The chapter President, Vice-President, officers, and staff are doing fantastic things for you and our chapter. Engage, participate, and enjoy the camaraderie of your fellow veterans, whose plights are very similar to yours. Why don’t you start by coming to the KIPVA Bluegrass Bass fishing tournament this year. I promise that I will make sure that some sarcastic putz doesn’t ask, “What’s wrong with this guy?”
By Brian Beisser