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“Strengthening Services for Veterans with Spinal Cord Injury and Disorder”

Senate Veterans Affairs Committee

September 17, 2025 (recording here)

HEARING INFORMATION

Witnesses & Written Testimony (linked) (Panel One):

• Shelly Hoover, EdD: Navy Veteran

• Mandi Bailey: Veteran ALS Action Committee

• Mary Ward: Veteran Spouse/Caregiver and Fellow, Elizabeth Dole Foundation

• Robert L. Thomas, Jr.: National President and Chairman of the Board, Paralyzed Veterans of America

Witnesses & Written Testimony (linked) (Panel Two):

• Erica Scavella, MD, FACP, FACHE: Assistant Under Secretary of Health for Clinical Services, U.S. Department of Veterans Affairs

• Manosha Wickremasinghe, MD: Executive Director, VA’s Spinal Cord Injuries and Disorders (SCI/D) System of Care

Keywords mentioned:

• Spinal cord injuries, ALS advocacy, caregiver support, mental health, community care, long-term care, funding challenges, staffing issues, telehealth, research needs, Elizabeth Dole Act, veteran-directed care, respite care

IN THEIR WORDS

OPENING STATEMENTS FROM THE COMMITTEE

• Chairman Jerry Moran highlighted the immense challenges veterans with spinal cord injuries and disorders face, noting their courage and resilience. He said the VA’s Spinal Cord Injury and Disorder (SCI/D) system of care was a critical lifeline and advocated for timely, efficient access to care, cutting-edge research, and robust caregiver support.

• Ranking Member Richard Blumenthal stressed that veterans with SCI/D rely on the VA more than most groups and praised VA employees for their unmatched quality of care. However, he warned that Secretary Doug Collins’s policies were leading to harmful staff cuts and delays in implementing laws like the Elizabeth Dole Act and the expansion of the caregiver program. He claimed that the VA was failing to deliver on promises already enacted by Congress and urged immediate action to preserve and expand SCI/D care rather than fighting just to maintain the status quo.

SUMMARY OF KEY POINTS (PANEL ONE)

• Dr. Shelly Hoover, a Navy veteran living with ALS, testified that the VA’s SCI/D system had saved her life and served as a model of collaboration. She recounted her efforts to transform ALS care from a focus on death to one on living, helping to build trust between advocates and VA leaders. She praised the creation of ALS coordinators and training programs but warned that hiring freezes and budget shortfalls were now jeopardizing veterans’ health and safety. Dr. Hoover urged Congress to fully fund the VA, empower stakeholders, and preserve the VA’s role as the best provider for catastrophically disabled veterans.

• Ms. Mandi Bailey shared her stepfather’s ALS journey and described how the local VA staff in Pensacola provided care superior to community providers despite being under-resourced. She said that veterans trust the VA because of the dignity and respect they receive there, crediting much of the progress to VA leaders who listened to stakeholders. However, she warned of inconsistency across facilities, with some providing gold-standard care and others hampered by red tape and lack of resources. Ms. Bailey called for uniform, fully funded care, expanded research into veterans’ heightened ALS risks, and exemptions from hiring caps for critical VA positions.

• Ms. Mary Ward, caregiver to her Marine Corps veteran husband with ALS, described the challenges of 15 years of caregiving and the profound importance of respite care. She shared the long delays and bureaucratic obstacles she faced in accessing VA housing, home-based primary care, and veteran-directed care programs. Ms. Ward urged the VA to make comprehensive care coordination and long-term caregiver support the standard rather than the exception.

• Mr. Robert Thomas from Paralyzed Veterans of America (PVA) testified that VA care was the best choice for catastrophically disabled veterans and consistently preferred by their members. He identified three major concerns: persistent staffing vacancies, aging and underfunded SCI/D facilities, and a severe shortage of long-term care beds. He underscored that delayed staffing and construction projects had real and dangerous consequences for veterans’ health. He urged Congress to hold the VA accountable for implementing the Elizabeth Dole Act, expand long-term care capacity, and invest in infrastructure and staffing to preserve the unique SCI/D system of care.

• Chairman Moran asked whether implementation of the Elizabeth Dole Act was far enough along or if oversight was needed. Mr. Thomas answered that while the VA claimed the program was implemented, many veterans could not access veteran-directed care because it was unavailable at their specific VA facilities. Chairman Moran agreed that oversight was essential and committed to working with PVA to correct deficiencies.

• The Chairman asked what reforms were needed to better support caregivers without compromising their health and well-being. Ms. Ward answered that coordination of care was the biggest challenge, as she often struggled to identify the right VA contacts while already overwhelmed by caregiving. She said that caregivers needed clear points of contact within the VA to access programs like veteran-directed care, long-term care, or respite services.

• Chairman Moran then asked how caregivers could be better informed about available VA services. Ms. Bailey answered that underfunding and understaffing were the main barriers, particularly in underserved areas like her own. She explained that while ALS coordinators were a positive step, her local VA was overwhelmed at 140% capacity, making it difficult for staff to return calls or connect veterans with resources.

• Ranking Member Blumenthal inquired about accessibility challenges when SCI/D veterans used community care providers. Ms. Bailey responded that her family initially had to use community care because their VA lacked a neurologist, and the provider had no ALS experience. She said that the care at the VA was far superior, though often slowed by red tape, and mentioned that traveling long distances for specialized procedures was an additional burden.

• The Ranking Member also asked about the need for mental health services, mentioning his BRAVE Act. Ms. Bailey answered that ALS greatly increased the risk of suicidal ideation, and while the VA did some screening, more comprehensive support was needed. She shared that her stepfather once considered ending his life due to the weight of ALS and believed that a stronger focus on mental health could help veterans live with their diagnosis rather than feel defeated by it.

• Sen. Thom Tillis told the panel he would submit questions for the record to Dr. Hoover and spoke about his proposed “Patriot Bill of Rights,” which would ensure veterans knew to contact their senators or representatives before hiring private attorneys for claims. He praised Ms. Ward’s caregiving testimony and emphasized the need to spread best practices across the VA system. He said that his remaining time in the Senate would be devoted to helping veterans access resources, reducing inconsistency in care, and strengthening accountability within the VA.

• Sen. Maggie Hassan asked about the impact of limited VA access for veterans in rural or underserved areas. Ms. Bailey answered that veterans preferred VA care because staff understood them and many were veterans themselves, but the lack of resources forced families into inadequate community care. She stressed that unfamiliarity with ALS among community providers was dangerous, as veterans might avoid care altogether. She urged that non-full-service VAs be trained to make appropriate referrals to ALS specialists.

• Sen. Hassan then asked how full implementation of the Elizabeth Dole Act would support caregivers. Ms. Ward answered that it would reduce silos within VA programs and eliminate barriers between facilities. She explained that accessing services like home-based primary care, veteran-directed care, and palliative or hospice care often required exhausting advocacy, even for someone with her knowledge of the system. She said that the Dole Act would simplify processes and give caregivers peace of mind.

• Sen. Angus King inquired about theories on why veterans are more likely to develop ALS. Ms. Bailey answered that theories included traumatic brain injuries (TBIs), environmental exposures, and certain military occupations that appeared to increase risk up to tenfold. She stated that more research was urgently needed to protect current and future service members, as well as to inform civilian ALS research.

• Sen. King asked about accessibility to long-term care and the scale of the problem. Mr. Thomas answered that there were approximately 60,000 SCI/D veterans, far exceeding the number of long-term care beds available. Sen. King pressed further, and Mr. Thomas agreed that shortages were severe and oversight of the Dole Act’s implementation was needed.

• Sen. King also asked about the VA’s staffing reductions. Mr. Thomas replied that while staff were trying to maintain quality, shortages in SCI/D centers created real risks for care quality and increased burnout.

• Sen. Tammy Duckworth condemned the Trump administration for cutting VA jobs and allowing ICE operations at VA facilities. She argued that these actions undermined care delivery and risked privatization of the VA. She then asked what steps the VA should take to ensure enough providers and accessible facilities for SCI/D veterans. Ms. Bailey responded that the VA must stop hiring freezes and fund more positions, explaining that current staff were working with their “hands tied behind their backs.”

• Chairman Moran asked whether community care referrals made sense in certain circumstances. Ms. Ward answered that specialized ALS clinics, such as Duke, provided excellent comprehensive care but required separate referrals for every specialty, making the process burdensome. She said that her family often relied on Medicare instead of VA referrals because it was simpler, even though the VA was the intended path.

• Chairman Moran questioned whether the ACCESS Act addressed concerns about ill-equipped community referrals. Mr. Thomas confirmed that PVA supported the legislation because it included provisions to ensure veterans were referred only to providers with proper expertise. He reiterated that while veterans valued choice, most PVA members preferred VA care because community providers often lacked the specialized knowledge required for SCI/D treatment.

SUMMARY OF KEY POINTS (PANEL TWO)

• Dr. Erica Scavella stated that the VA operates the nation’s largest and most comprehensive integrated health system dedicated to treating SCI/D, serving over 24,000 veterans. She explained that the hub-and-spoke system delivers individualized, interdisciplinary care, including rehabilitation, preventative care, respite, long-term support, and home-based services. Dr. Scavella illustrated recent legislative progress under the Elizabeth Dole Act and noted ongoing investments in adaptive technology, vehicle conversions, and partnerships with advanced manufacturing to provide personalized innovations like 3D printing. She concluded that the VA remained dedicated to ensuring veterans with SCI/D receive high-quality, comprehensive care and stood ready to answer questions.

• Sen. King inquired whether the VA was pursuing research on why veterans develop ALS at higher rates than the general population. Dr. Scavella answered that ongoing research was underway into possible causes, noting suspicions about certain agents and a confirmed correlation between military service and ALS.

• Sen. King turned to the VA’s efforts on falls prevention, mentioning its importance in preventing spinal and brain injuries. Dr. Scavella responded that falls prevention had been an ongoing VA priority since 1999 and that renewed attention was being given to ensuring veterans avoided falls in facilities and at home. She said that she would provide further details for the record.

• Sen. King asked the witnesses to describe the VA’s strategy for managing SCI/D care. Dr. Manosha Wickremasinghe explained that the VA had 25 dedicated SCI/D centers and over 120 spoke sites providing localized and specialized care. She described interdisciplinary teams that addressed acute rehabilitation, long-term care, outpatient services, respite, and home care.

• Chairman Moran asked Dr. Scavella what she had learned from the first panel’s testimony and how the VA could improve. Dr. Scavella answered that she was proud of the VA’s partnerships with the first panel witnesses, including Dr. Hoover, and highlighted the importance of listening to veterans and caregivers to improve care.

• Chairman Moran questioned whether SCI/D programs were receiving the full funding Congress appropriated. Dr. Scavella answered that she was not aware of funding shortfalls and said that exemptions existed to ensure patient care staff were not impacted by freezes. She said staffing levels in SCI/D had remained the same from September 2024 to September 2025.

• The Chairman asked if there were staffing challenges in rural areas. Dr. Wickremasinghe explained that rural outreach relied on transportation support, telehealth, spoke clinics, telemental health, and tele-wound programs that allowed specialists to monitor patients remotely and intervene sooner when needed.

• Chairman Moran asked about siloed care and lack of coordination, concerns raised by the first panel. Dr. Wickremasinghe responded that within SCI/D the VA provided an interdisciplinary, lifelong continuum of care, though she deferred details on ALS-specific care to subject matter experts.

• Chairman Moran asked how the VA connected veterans with opportunities to participate in clinical trials. Dr. Scavella answered that the VA was a leader in research, with 27 active trials and projects focused on SCI/D. She cited stem cell research at UCLA and neuropathic pain research in Connecticut as examples and promised more details for the record.

• Ranking Member Blumenthal asked how workforce cuts had affected SCI/D staffing and requested numbers on vacancies. Dr. Scavella answered that she did not have current data on attrition rates, but said direct patient care positions were exempt from freezes. She admitted that she could not provide estimates on vacancies for nurses, recreational therapists, or doctors, but she committed to providing detailed numbers for the record.

• The Ranking Member pressed further on whether SCI/D hubs and centers had contracts with outside providers. Dr. Wickremasinghe said that her office did not manage contracts, and she would need to provide details for the record. Ranking Member Blumenthal expressed frustration at the lack of preparedness and said VA leaders should know whether contracts existed at the centers.

• Ranking Member Blumenthal asked whether the VA regarded Dole Act implementation as a success. Dr. Scavella replied that she was grateful for provisions like Section 120 that addressed patient challenges but deferred on staffing needs, promising to provide accurate information later. The Ranking Member expressed disappointment at the lack of concrete answers and said that the VA’s workforce losses under Secretary Collins and the Trump administration were harming care.

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