▶ 0:15:12>> good afternoon. I need to end the silence in this room. We should be warm and welcoming and we are glad you are here. I want to extend a welcome to our witnesses. Your presence and testimony are valuable and we will work, as we work to fulfill our nations promise to care for those who served. Veterans, those with spinal cord injuries, are a testament to courage and resilience.
▶ 0:15:44The challenges they face are often lifelong. For many, a different journey begins the moment they received the diagnosis, marked by physical and emotional hurdles that require specialized care and a dedicated support system. The v.a. Spinal cord injury and disorder system of care is a critical lifeline, making sure they receive quality care when needed. We will examine the current state of the v.a.
▶ 0:16:11Scid system of care, identify where it is succeeding and should do better. We must ensure access to care is timely and efficient, the v.a. Is at the forefront of technology and veterans and caregivers have resources and support they deserve.
▶ 0:16:36I look forward to hearing them witnesses this afternoon which include shelly hoover, a navy veteran living with als since 2013 and will testify using a speech generation device. Mandy bailey lost her stepfather to als and has dedicated her efforts to supporting veterans with als and caregivers.
▶ 0:17:05Mary ward, a spouse and caregiver to her marine core veteran husband who has been living with als for 15 years. And robert thomas, an army veteran and national president of paralyzed veterans of america, the only organization dedicated to the veteran scid community.
▶ 0:17:31These witnesses will provide accounts of the challenges living with spinal cord injuries and disorders and how the v.a. And the committee cancel veterans and their families -- can support veterans and their families. I thank you for your service and advocacy on behalf of of others. I yield to senator blumenthal for his opening remarks.
▶ 0:17:54Sen. Blumenthal: Thank you for being here. As caregivers and veterans of very deep and immediate experience with spinal cord injuries and disorders, the challenge of being here is probably even more difficult than for many of our other witnesses.
▶ 0:18:23Sen. Blumenthal: So you're being here at this meeting, I am glad we are focusing on a part of the veteran population that relies probably more than any other group on the v.a., and that is a testament to the quality of care that the v.a. Provides.
▶ 0:18:41Sen. Blumenthal: The employees who provide this kind of care are unmatched in the private sector, making these services extremely valuable but also vulnerable to the type of cuts and cancellations we are seeing throughout the v.a. As the v.a.
▶ 0:19:00Sen. Blumenthal: Continues to bleed employees due to the secretary's harmful policies, the services provided to people who are directly involved in scid are particularly at risk. I think today's hearing is very, very timely and important.
▶ 0:19:27Sen. Blumenthal: Veterans who receive these services from the v.a. Can't easily transfer that care to community providers, where facilities are often inaccessible and providers rarely receive specialized scid training. The training is essential, not a luxury. When dealing with severe life-threatening complications that can arise from seeing a provider who is not sufficiently trained.
▶ 0:19:57Sen. Blumenthal: I'm disturbed at how the secretary failed to provide any credible assurance that he will fight to provide access to scid care at the v.a., which even before the cuts needed bolstering and expanding. The administration has left many veterans with scid and loved ones in limbo by failing to publish a rule to extend eligibility for participants in the caregivers program.
▶ 0:20:29Sen. Blumenthal: I think that is an immediate need that needs to be addressed. He has been slow-rolling implementation of the elizabeth dole act, which would approve -- improve access to long-term care services for veterans with scid. He is delaying implementation of critical funding increases for veterans experiencing homelessness.
▶ 0:20:58Sen. Blumenthal: Congress intended these funds for providers to keep their doors open and continue supporting veterans. On both of these provisions we have been given assurances that immediate implementation was not only possible but a priority for the v.a. Months later, we have no concrete implementation guideline for either authority.
▶ 0:21:18Sen. Blumenthal: I wish we could be using today's hearing to discuss expanding scid care at the department of veterans affairs rather than fighting to keep the status quo and asking the v.a. To implement laws congress already past. We worked hard on them. We approved loss. The v.a. Is failing to implement them because of the leadership.
▶ 0:21:47Sen. Blumenthal: Not because of the dedicated, hard-working v.a. Workforce having any reluctance to do so. They want to serve. I think the chairman for having this hearing and I look forward to hearing from you.
▶ 0:22:00Chair Moran: Senator blumenthal, thank you. Ms. hooper, you are recognized for your testimony. Thank you for joining us and communicating with us.
▶ 0:22:14Ms. Hoover: Chairman moran, ranking member blumenthal, and distinguished members of the senate committee. Thank you for the opportunity to appear before you today. My name is Dr. shelly hoover, and I am a veteran of the united states navy. For 12 years, I have been part of the spinal cord injury and disorder system of care, and I stand here today as a testament to the life-saving care provided by the veterans health administration.
▶ 0:22:41Ms. Hoover: This testimony is the culmination of a decade spent advocating for the more than 4,000 veterans currently living with als. My journey with als began in 2013. Initially, the va's support felt focused on end-of-life care, a system designed to manage my death rather than empower my life. But I had a different plan.
▶ 0:23:05Ms. Hoover: I proactively sought out an als multidisciplinary clinic and worked to redefine my path. That experience drove me to seek a seat at the table with the va als executive committee, alsec. Working alongside a team of fellow advocates, we built a relationship of trust with the alsec. We urged them to make the als system of care more user-friendly for veterans and their caregivers, and they listened.
▶ 0:23:35Ms. Hoover: Under the visionary leadership of drs. Illeana howard and sharyl martini, the committee achieved significant improvements without any additional compensation for their work. Their dedication led to the creation of a network of als coordinators, including nearly all of the 170 va medical centers. A comprehensive website to help veterans and caregivers navigate their care. An internal training program for new coordinators and other departments.
▶ 0:24:05Ms. Hoover: This model, which integrates feedback from those with "boots on the ground" experience, demonstrates the power of collaboration and mutual trust. It is a gold standard for enhancing the veteran experience and improving morale for va employees who care so deeply for those they serve. Based on my lived experience, I offer two recommendations for continued improvement and future success. Recommendation 1, empower stakeholders.
▶ 0:24:36Ms. Hoover: All departments and workgroups within the spinal cord injury and disorder system must develop trusting relationships with both internal and external stakeholders. As the alsec has demonstrated, this approach enhances employee morale, empowers stakeholders, and, most importantly, improves the quality of care and the overall experience for veterans. Recommendation 2, ensure full funding.
▶ 0:25:03Ms. Hoover: Congress must ensure the veterans health administration is fully funded. In addition to budget cuts, congressionally allocated funds for special diagnoses, like als, cannot be spent due to va-imposed hiring freezes and caps. Can that be corrected? These funding shortfalls have had a direct and devastating impact on my health and safety.
▶ 0:25:28Ms. Hoover: I recently experienced severe complications after a va pharmacy, due to budget cuts, was unable to provide the liquid form of a prescribed chemotherapy drug. I suffered severe burns across my chest and pelvic region, an extreme and avoidable outcome. Delays are now a constant risk. For example, my replacement mic-key button, used for feeding and medications, is over a month late.
▶ 0:25:57Ms. Hoover: How long before my current one breaks down and my stoma becomes infected? Life-sustaining breathing and nutrition supplies that were once readily available now face delays of weeks or even months. For a person with my condition, this is not just an inconvenience, it's a grave threat. I will not die from als. I will likely die from infection, a risk dramatically increased by these supply delays.
▶ 0:26:27Ms. Hoover: Some may suggest that private community care is the solution, noting its budget was recently doubled. However, with one exception, my personal experience has been a disaster. I've endured six-month delays and lost referrals, forcing my husband to spend countless hours on the phone. In one instance, a private medical office initially refused to treat me due to my tracheostomy, a clear violation of my rights.
▶ 0:26:55Ms. Hoover: By contrast, I have never experienced a delay or faced discrimination from the durham va medical center. It is clear to me that the va is the best choice for veterans. My family's legacy is deeply tied to military service, with eight of my immediate family members having served in the army, navy, and marines. I am profoundly grateful for the exceptional care the va provides, and my grandchildren are thankful that I am still here because of it.
▶ 0:27:26Ms. Hoover: To continue this gold standard of care, the spinal cord injury and disorder system must actively seek input from external stakeholders. And, above all, congress must fully fund the va to protect the health and lives of current and future veterans. Thank you.
▶ 0:27:48Chair Moran: Thank you for your testimony and your service. I now recognize. Elizabeth. >> thank you for the opportunity to speak before you today. My name is mandi bailey, and I am the team lead of the als hope foundation's veteran als action committee, a volunteer group of veterans and caregivers impacted by als. Als is a 100% fatal disease with no known cure.
▶ 0:28:16Chair Moran: And for reasons not yet fully understood, our veterans are at a significantly higher risk of developing als. My family got a crash course in als and va care when my stepdad, a proud veteran, was diagnosed in 2017. Our local va in pensacola, florida, is understaffed and under-resourced, but they did everything they could to ensure that my stepdad was able to live his life with dignity until his passing on february 2, 2018.
▶ 0:28:44Chair Moran: Because of the lack of services and resources at our va, we had to use community care in addition to the services we received at the va. In our opinion, the care received inside the walls of our local va medical center was far superior to the community care we received. I soon learned that we aren't alone in that opinion. In 2024, a survey was conducted by the department of veterans affairs veteran experience office that revealed the highest trust levels in years.
▶ 0:29:10Chair Moran: Our veterans know that by receiving care at the va, they will be treated with the dignity and respect they deserve as U.S. veterans. But it wasn't always this way. The va has worked very hard to improve the care that they died, and they als system of care, much of the progress has come from allowing the stakeholders, like myself, to give feedback and being open to ideas and input from the community. Dr.
▶ 0:29:35Chair Moran: Ileana howard, director of neurology for als, has done a tremendous job of listening and has made considerable improvements to the als system of care by doing so. She has brought the voice of the veteran to the table and it has made a huge difference. While it is important to recognize how far the va has come in its care for veterans we know there is still room for growth.
▶ 0:29:56Chair Moran: In 2021, the va issued a vha directive 1101.07 amyotrophic lateral sclerosis system of care, and recently a comprehensive als handbook. The problem is that one va is one va. The services and resources at one v.a. Are not the same as the services and resources at another.
▶ 0:30:18Chair Moran: For example, my team co-lead, jill brattain's husband, dave, received top notch care during -- at the richard roudebush va in indianapolis during his als journey. Their team was proactive, knowledgeable, and responsive to their needs. The care jill and dave received is why the va was called the gold standard in a recent report from the national academies of science, engineering, and medicine. In contrast, our care was held up by red tape, lack of knowledge, and scarce resources.
▶ 0:30:47Chair Moran: Our team did what they could, and we are grateful, but there was so much we missed out on because of our zip code. Consistency of care cannot happen without proper funding and support. Veterans and their families deserve uniformly high quality care through the va. Additionally, that same national academies report that praised the care provided by the va should also serve as a wake up call.
▶ 0:31:12Chair Moran: We need to fund research that will give us answers to what is causing our military veterans to be diagnosed at higher rates and what we can do to prevent and possibly even cure this disease. When you are diagnosed with als you quickly learn that the treatment options are few, and the options that are there might only buy you a few months. Many times the focus shifts to finding ways to remain engaged in life. Veterans are fortunate that the va provides many of the tools they need to do this.
▶ 0:31:39Chair Moran: Eye gaze computers, home modifications, wheelchairs, and -- are just a few of the waves that the ba helps veterans continue to have the best quality of life. Va providers go above and beyond to help veterans living with als find ways to do things they love and are a critical part of caring for our veterans. Not just for their physical health, but for their mental and emotional well being.
▶ 0:32:03Chair Moran: Veterans already carry a higher risk of suicidal ideation, but a veteran that was diagnosed with als, the risk goes up almost four times. Staying engaged in the world has a big impact on the mental health of a veteran. I have seen the impact first hand. My dear friend and veteran living with als, Dr. mary porter was feeling the weight of her diagnosis. Life was difficult and she was bracing for the inevitable until she was encouraged to try her hand at art, which lifted her spirits and she decided to see what else she could do.
▶ 0:32:33Chair Moran: Fast forward to february of this year when she not only participated in the invictus games, but she earned a gold medal. Now, she is still active, finding new adaptive sports to try, and encouraging other veterans to do the same. Protecting the services provided to our veterans can and will save lives. We strongly suggest exemptions from hiring caps for positions funded by congressional mandated programs.
▶ 0:33:00Chair Moran: I'd like to leave you with the words of brigadier general thomas mikolajcik from his congressional testimony on als in 2007. "if these soldiers were dying on the field rather than at home as a result of their service, we would leave no stone unturned. We would use the best existing resources and programs to make sure they had whatever they needed to survive, to ensure that no man or woman is left behind." thank you.
▶ 0:33:27Chair Moran: Thank you, Ms. bailey. Ms. ward, you are recognized for your testimony.
▶ 0:33:37Ms. Ward: Thank you.
▶ 0:33:40Chair Moran: Redlining, yes. It is confusing.
▶ 0:33:46Ms. Ward: Thank you for inviting me to testify today. My name is mary ward, and I am the wife and full-time caregiver for my husband tom.
▶ 0:33:53Chair Moran: Paul the microphone closer.
▶ 0:33:59Ms. Ward: I am the wife and full-time caregiver for my husband tom, a marine corps veteran diagnosed with service-connected als over 15 years ago. I 2016 elizabeth dole foundation am a fellow. I would like you to pause and think of a simple pleasure you enjoy by yourself. For me, it has long been a starbucks vanilla bean frappuccino with three pumps of vanilla, fat-free milk, and whipped cream. For years, I thought the joy was in the ritual but this past july, I realized I had redefined what it means to me. Now, the joy that comes when I can drink that frappuccino is knowing there is a nurse at home with my veteran husband, ensuring he is safe and supported.
▶ 0:34:29Ms. Ward: In that moment, I am not a caregiver. I am me, doing something normal. That is the gift of respite. And it took eight years to get there. Who understand the importance of long-term care support, it helps to know our journey. In 2010, he was diagnosed with als and type two diabetes in tom 113. Is rated 100% permanently and totally disabled.
▶ 0:34:50Ms. Ward: A typical day includes checking blood glucose, responding to alarms, getting him showered and dressed, administering medications, assisting with eating and helping him clear mucus from his lungs. Shortly after his diagnosis the v.a.
▶ 0:35:08Ms. Ward: Denied the adaptive housing grant and vehicle grant because tom wasn't rated 100% area despite being diagnosed with a progressive terminal disease it took two years before policy shifted that rated him to 100%. During that period of the v.a. Gave him a power wheelchair but it stayed in the garage because we didn't have an accessible home or vehicle to accommodate. After the wheelchair was delivered the v.a. Approved the grant.
▶ 0:35:37Ms. Ward: We got busy developing a plan for my teacher as a widow. In 2010 we moved to wilmington to downsize and save money. I accepted a virtual teaching position and left my state retirement behind. In the va approved tom for the 2013 sah grant, but that didn't mean our wait was over. From start to finish it took 27 months to make the house accessible. It is not a process I want to repeat. In 2016 we enrolled in the home-based primary care program.
▶ 0:36:06Ms. Ward: Because we didn't live in the area for dorm service we only had access to the wilmington sea voc. If we chose wilmington we couldn't access care at the durham v.a. And we had to choose. After mishaps due to the situation including the inability to address a malfunction with the non-invasive ventilators, we made the choice to give up hp pc and move care to durham. I decided to apply for tom.
▶ 0:36:35Ms. Ward: It is innovative and offers a budget for personal care services and allows more flexibility and control of his or her care. Although I knew another veteran enrolled, I was repeatedly told by a social worker that it didn't exist. I let it go. I didn't have the energy to take on another battle while caring for tom and dealing with his health complications. I try again but my attempts to access were foiled until last year when we were enrolled.
▶ 0:37:03Ms. Ward: That didn't mean we received services. When I asked for a timeline for funding, the respondent was 30, 60, 90 days, we don't know. With zero sense of urgency, we withdrew from the program. I realized I couldn't do it alone anymore. His als progressed, his diabetes was more complex and I didn't realize how exhausted I was from 24/7 caregiving. With the elizabeth dole foundation we pursued skilled nursing care as a possible alternative.
▶ 0:37:36Ms. Ward: At first I doubted tom would qualify. He has multiple complex diagnoses but isn't ventilator dependent which seems to be the criteria. After the intervention of leadership, skilled nursing care was provided. Tom said she is my wife first, caregiver second. That has changed over the last few years. The benefit of respite for me is clear and because of it the care I provide tom is exponentially better. My sense of humor and joy has returned. At the end of the nurse's shift, I look forward to seeing him.
▶ 0:38:07Ms. Ward: Last week one of our nurses discovered tom's blood pressure was running high, despite medication. This finding likely prevented a crisis. I share the story because while we found the proper support it should not have taken eight years. Relentless advocacy, and national-level intervention to get here. Too many caregivers give up before they reach this point. They go unseen, unsupported, and burned out. Simply put, veterans suffer when their caregivers suffer.
▶ 0:38:32Ms. Ward: I hope you will note the recognition -- the recommendations outlined, especially promoting effective, proactive care. For those with does the -- devastating injuries, respite is not a luxury. It is essential. For cap -- caregivers, families and veterans. I'm grateful for the nurse's who come to our home, for the elizabeth dole foundation advocacy and the staff who stood by us.
▶ 0:38:59Ms. Ward: The care we received shouldn't be the exception after years of struggle. It should be the standard. There are thousands of caregivers waiting for that moment to take a breath. Make it possible for them to find joy again and to see and feel that they matter, too. Their veterans' care, and sometimes their lives, depend on it. Thank you.
▶ 0:39:21Chair Moran: Thank you, Ms. ward. And now, Mr. thomas.
▶ 0:39:31Mr. Thomas: Chairman moran, ranking member blumenthal, and members of the committee, I appreciate the opportunity to speak with you today on behalf of paralyzed veterans of america about the strengths and weaknesses of department of v.a. Care with veterans for spinal cord injuries and disorders. When I testified in march, I expressed our frustration with the existing state of the scid system and a concern its future.
▶ 0:39:56Mr. Thomas: We have relayed some of our biggest concerns to secretary collins and he has signaled to us that the v.a.'s specialized services and the care of catastrophically disabled veterans are a priority in this administration. But he can't do it alone. Your leadership and support are needed to preserve and strengthen the scid system of care. And all v.a. Care for catastrophically disabled veterans. The v.a.
▶ 0:40:23Mr. Thomas: Is the best health care provider for disabled veterans particularly those with catastrophic disabilities. Our members consistently choose v.a.. Recently, a member expressed the sentiment when he relayed that while he has had surgery in the community, the v.a. Dr. at that dwight d. Eisenhower medical center in leavenworth understands the full nature of his trauma.
▶ 0:40:51Mr. Thomas: They provide tailored support with post surgery rehab and long-term support that increase his quality of life. Another member in colorado shared his contrasting experiences between va and community emergency room visits following a severe flare-up of multiple sclerosis. Va news published the story, and I strongly encourage you to read it.
▶ 0:41:16Mr. Thomas: We have three primary concerns about the ability of scid character to you serving veterans both now and in the future. These concerns are ongoing staffing vacancies, delayed infrastructure improvements, and the continued shortage of specialty long-term care beds. Staffing levels in the scid system of care are detailed in 1176.
▶ 0:41:43Mr. Thomas: The requirements outlined are based on the level of care needed to maintain the health and well-being of veterans with scid. Va leaders have treated them as optional rather than directive based on best care standards. As a result, v.a. Can only staff a nominal number of beds in some locations.
▶ 0:42:03Mr. Thomas: The impact of such practice is profound, causing severe delays and critically needed routine care including annual exams and respite, as well as acute care needs. These delays have consequences for veterans who need care now. The v.a. Must be able to staff to the level needed to staff -- serve veterans. We need new approaches to recruit medical professionals in hard to recruit locations.
▶ 0:42:34Mr. Thomas: Furthermore, the bureaucratic hiring process must be streamlined to allow professionals to be identified and onboard it as quickly as possible. Secondly, we are concerned about delayed infrastructure improvements. The scid system of care is comprised of 25 acute care centers and six long-term care centers with the average age of 40 years old. Many older centers only had minor cosmetic renovations.
▶ 0:43:02Mr. Thomas: More than a dozen scid related construction progress continue to go unfunded year after year. Reviewing v.a. Infrastructure, decision-makers must remember the v.a. Scid system of care is unique and not replicated outside the v.a.. We believe the v.a. Should return to the practice of placing greater emphasis on funding facilities that support the types of services like scid care. Which the department uniquely provides.
▶ 0:43:34Mr. Thomas: Investment in these areas will strengthen the v.a. Specialty care services and ensure their teacher availability. Finally, our nation's lack of adequate long-term care options is a huge problem for people with catastrophic disabilities. There are few long-term care facilities capable of appropriately serving veterans with scid.
▶ 0:44:00Mr. Thomas: With less than 180 beds, long-term care facilities are not enough for the tens of thousands of veterans with scid area at expanding projects provides additional beds and I would be a good first step to ensuring quality care. Many members depend on v.a. Home community-based services throughout their lives. We are appreciative of congress passing last year the senator elizabeth dole act.
▶ 0:44:29Mr. Thomas: We need you to exercise your oversight authority to ensure the measure is implemented as congress intended. Thank you for the opportunity to present. I would be happy to answer any bastions.
▶ 0:44:42Chair Moran: Thank you, Mr. thomas. That last sentence, are you aware of, is the implementation far enough along of the elizabeth dole act that you know of instances where we need to be exercising oversight authority to get something on the right track that seems to be on the wrong track?
▶ 0:45:02Mr. Thomas: That is a great question. There are limitations to the veteran directed care that come up through the elizabeth dole act. And it is implemented throughout the v.a. But individual members trying to get on the program are not able to get on the program.
▶ 0:45:28Chair Moran: That is important for us to know. The elizabeth dole act is one of the most significant pieces of legislation this committee has enacted. Implementation is hugely important and we will continue to work with you and pva to make sure that and other instances are brought to the v.a.'s attention for correction. Does that make sense?
▶ 0:45:52Mr. Thomas: Yes, sir.
▶ 0:45:55Chair Moran: Ms. ward, caregivers, especially those, for those with spinal cord injuries or disorders, as you indicated, face major physical, emotional and financial strain. You talked about respite care programs that fall short.
▶ 0:46:19Chair Moran: What reforms, changes would you suggest that need to be pursued to make certain caregivers receive adequate support without compromising their own health and well-being?
▶ 0:46:32Ms. Ward: That is where I think about the coordination of care. Personally I'm in the pca fc program and I access my caregiver support coordinator for respite care to come here today to get approval for that. My only note, I have approval, I could get approval because I worked with the elizabeth dole foundation to get the nursing care my husband needed. I didn't know who to ask to get that done. That is a problem.
▶ 0:47:03Ms. Ward: I should know. We are 15 years into this. I should know and believe me, I know a lot about the v.a. And the bureaucracy and the challenges, but there is a point at which I'm busy being a caregiver, trying to keep this guy alive and I can't do all of that. I need someone at the v.a. Where I can say, I need help. Do you understand what this program is? Can you get long-term care for us? What can we do?
▶ 0:47:32Ms. Ward: How can you help me do the job I need to do?
▶ 0:47:36Chair Moran: You are actively engaged in the elizabeth though foundation. Tell me what services are offered that others should know about, someone in the same position you have been in? , where should they turn for help?
▶ 0:47:52Ms. Ward: If they are not in pca fc I don't have an answer. I don't know who they would go to. If you are in the veteran als lane, at the v.a., there is an als coordinator at many v.a.'s and I think mandy bailey can speak to that.
▶ 0:48:14Ms. Ward: I don't access the als coordinator because I knew more than our als coordinator so I could do her job or I could be tom's caregiver.
▶ 0:48:23Chair Moran: Let me ask Ms. bailey that question. I recognize, we recognize the v.a., many veterans don't know what services they are entitled to, don't know what is available. Munication is important obviously, but particularly for caregivers. Tell me how we can provide the information necessary to get people to the resources they need.
▶ 0:48:54Ms. Bailey: In my opinion, a lot of it comes down to funding and support. In our area, we are in underserved, under resourced area. Everything we did felt like it was sent out to community care. The als coordinator position is a fairly new thing brought about I believe, that came in with the vha directive 1101. 07.
▶ 0:49:24Ms. Bailey: It wasn't around when my stepdad was going through als. For us it was calling our caseworker and because of the understaffed nature of the v.a. Where we live, sometimes it was hard to get a call back because she was busy herself, taking care of the many, many other families and veterans she had to contend with. So I think a lot of that comes down to funding and support. Our v.a. Last I heard was 140% of capacity.
▶ 0:49:53Ms. Bailey: They are wildly, wildly understaffed for what they are dealing with. They don't have the resources and time available while they are in those walls doing their job, to be able to answer all of those phone calls and get people connected with the resources they need and do the research to find out where they need to be sent. Again, funding and support, our v.a.'s need funding and support desperately to do their jobs the way our veterans deserve.
▶ 0:50:21Chair Moran: Let me call on the ranking member.
▶ 0:50:25Sen. Blumenthal: Thank you. Thank you all for being here and for your excellent testimony. We have heard about community care providers outside the v.a. Presenting accessibility challenges when scid veterans or others who are nonambulatory, disabled or have complex health needs, try to get access to
▶ 0:50:55Sen. Blumenthal: Those private non-v.a. Facilities. I wonder if you could talk a little bit from your experience what you have seen or heard. Ms. bailey and others on the pen.
▶ 0:51:09Ms. Bailey: We were sent to the community to get care, first to see a neurologist. At that point there wasn't a nonstaff neurologist at our local v.a. Thank goodness there are now, we have a fantastic neurologist but unfortunately they weren't there for us. It took some time to put into the schedule to see the neurologist and we were his first people he dealt with, with als.
▶ 0:51:39Ms. Bailey: When you are dealing with als you want somebody with knowledge, not somebody who says this is the first time I have dealt with that. That was difficult for us. It is scary, so scary. I'm grateful he was willing to learn, but the care that was in the community was nothing like the care we received at the v.a.
▶ 0:52:00Ms. Bailey: They at least knew what als was, and although it was held up by red tape and all the limitations they had, it was still far superior to the care we received. We even had to go out of our v.a. When he needed his feeding tube done. We had to go to biloxi, several hours away. That is a difficult drive when you are taken -- taking care of someone with als and can't move their arms and legs.
▶ 0:52:31Ms. Bailey: You are the only person who can do that for them and then you have to drive home the same day. I can't say community care in our area would been much better. Again, lack of knowledge is a huge problem. They don't understand the complex needs of als like the v.a. Providers would.
▶ 0:52:51Mr. Thomas: In addition to what Ms. bailey said, a lot of the community facilities don't have the adequate amount of wheelchair space for the proper equipment to move an individual in a wheelchair to the exam tables or even give them a good x-ray. We run into that issue all the time.
▶ 0:53:13Sen. Blumenthal: Task -- I want to ask about mental health. I have a bill called the brave act that includes requiring v.a. To establish a pilot program to ensure v.a. Residential rehabilitation treatment programs deserve inpatient residential treatment, including for mental health.
▶ 0:53:43Sen. Blumenthal: Maybe you can comment on the need for both inpatient and other kinds of mental health treatment programs.
▶ 0:53:54Ms. Ward: As I mentioned, when you are diagnosed with als is a veteran, your suicidal ideation risk goes up tremendously. Mental health, while it is addressed, typically there is a questionnaire or they asked several questions to assess how you are doing. I think there is a bigger need to address the mental health needs of veterans with spinal cord injury and disorder, especially als.
▶ 0:54:26Ms. Ward: When you have a terminal diagnosis it changes your entire outlook on the world. My stepdad, my stepdad wanted to take his life because it became too much for him. And he didn't, and I'm thankful for that. But I wish there had been more of a focus on mental health. I wish he had had somebody like my friend, Dr.
▶ 0:54:51Ms. Ward: Mary porter, had that would encourage him to try new things and see that he could live with als and you are not dying of als. That is an important thing that needs to be addressed in the mental health area for als.
▶ 0:55:05Sen. Blumenthal: Any others? Thank you.
▶ 0:55:10Chair Moran: Senator tillis.
▶ 0:55:13Sen. Tillis: Ms. ward, welcome to the committee. I'm actually sitting in the seat occupied by senator dole back in the day and I'm proud of the work she continues to do on this and many other areas. Welcome to the committee. I would like to ask a few questions. Dr.
▶ 0:55:36Sen. Tillis: Hoover, we will be submitting for the record some questions I would like to get from you in terms of the fabric that has to come together to provide a network supporting people suffering from this horrible disease. Before I start, a couple weeks ago I was walking down the hallway, I grew up in a family of six kids so I hear a lot of voices at once.
▶ 0:56:02Sen. Tillis: I heard police officers say he was going to have to file an appeal or try to figure out a way to get care himself, not in this space but I asked him, have you contacted your congressman? He is not from north carolina but I said I want to help you. Make sure you are using every available resource before you start spending money.
▶ 0:56:27Sen. Tillis: Which is why the last congress, I proposed the patriot bill of rights, which is to make absolutely certain that any veteran knows that before you spend a dime on an attorney or even other support organizations, you put a call in to your senator, call your congressman.
▶ 0:56:48Sen. Tillis: What I wanted to do, I have run into a little bit of pushback mainly from people who benefit from patriot's not knowing this, is to make sure before you sign an agreement with somebody who is going to act on your behalf and charge you for that fee, you know what options are available that are not subject to a charge. Like a U.S. senator who is hellbent on trying to clear cases before you go anywhere else.
▶ 0:57:17Sen. Tillis: We will reintroduce the paper it's bill of rights. If you are trying to help somebody, I want a piece of paper down there that says these options were available to you if you haven't used them, you may want to before some of the benefits you worked hard for and deserve go to somebody else representing on your behalf. We can't close all cases. Some have to be adjudicated.
▶ 0:57:43Sen. Tillis: There is an appropriate place but I do think there are organizations that hope they get a good outcome for the veteran they represent but frankly, they also want a good outcome for their pocketbook. In the remaining time I have come a Ms. ward, spread the word in north carolina. I have 473 days before I retire and I'm not counting those days because I want to get out of here. That is how much time I have to help. Ms. bailey.
▶ 0:58:15Sen. Tillis: And to everyone. I have a personal story on caregiving. I know how hard it can be. Even the coffee break, your testimony was compelling. I don't believe that I believed everybody at the v.a. Wants to do the right thing but we are doing things inconsistently and we are doing things on an uninformed basis.
▶ 0:58:43Sen. Tillis: We don't need somebody providing care to a very specific disease that has very specific protocols for trying to provide the best care. We don't want somebody doing on-the-job training, to your point, Ms. bailey. We have, there are good stories to be told even in north carolina.
▶ 0:59:04Sen. Tillis: But the variation between just the facilities within our state and the variation across the country is unacceptable. I worked in management consulting before I got into public service. There is such a thing as best practices. I would like for you to think about in your respective organizations, let's shine light on best practices going on in the v.a.
▶ 0:59:29Sen. Tillis: And put pressure that is often a resource issue, but let's put pressure on everybody measuring up to what that best practice looks like. Let's make sure the secretary, who I have great confidence in, and everybody at the v.a., people are working hard but it is all about resource, connections and setting high expectations and measuring results.
▶ 0:59:55Sen. Tillis: I will not ask you any questions here in the committee, but we will be submitting questions for the record to say how do we do it? Hi -- how do we fund best practices, to say every visit should have a best practice model and if they don't, we need to have one in this case and several others. Count me in, in my remaining time to do everything I can to help.
▶ 1:00:20Sen. Tillis: In the meantime, count me in to make sure every veteran knows if they can't get a good response from a congressman or senator from their state, we will work with those senators to do the casework in north carolina for anybody. Thank you.
▶ 1:00:33Chair Moran: Thank you, senator. You took me by surprise claiming the dole seat because I was like that is me. Wrong dole. Senator hassan.
▶ 1:00:45Sen. Hassan: Thank you. I appreciate you and the ranking member having this hearing today. Tower witnesses, thank you for testifying before us today and for your service to our country and our veterans. Ms. bailey, I want to start with a question for you. First, my condolences for your family's loss.
▶ 1:01:08Sen. Hassan: I didn't know your stepfather but I'm confident he will be proud of your advocacy for veterans. Your testimony touched on an issue that I think is important, which is access to high-quality care where and when you need it. In response to a question from senator blumenthal, you mentioned after your stepfather's diagnosis, he had to use community care in addition to the care he received from the v.a.
▶ 1:01:36Sen. Hassan: Because of the lack of resources available. You talked about the impact, the lack of experience the community care provider had. This is beyond an individual profile of a particular disease.
▶ 1:01:56Sen. Hassan: My concern, because I'm from new hampshire which doesn't have a full service va hospital and has a high rural population of veterans who live far from the nearest facility. Can you expand how veterans are affected when they can't get all of the care they need through the v.a. That is practically accessible to them?
▶ 1:02:20Ms. Bailey: There is a lot of things that can happen. First and foremost, I think there is a mental aspect. At the v.a. It is a culture. Our veterans like being there. They prefer it because those people understand them. Many v.a. Providers and employees are veterans themselves. There is a new bond veterans have -- a unique bond veterans have, and the trust. That is a big thing to look at.
▶ 1:02:51Ms. Bailey: You know, the lack of knowledge in these conditions like als, that is very, very important to address and I think in our family, being sent to the community to get care, it was frustrating. Our family question, should we go back to this doctor? That is dangerous when you were dealing with als.
▶ 1:03:16Ms. Bailey: There are many things to consider, feeding tubes, breathing options, pt, ot, respiratory care. You need to make sure you are taking those things into account. If you are sent to a community care physician or provider who does not understand your condition, you are not as likely to go back and continue that care. You have a problem with, is this going to go downhill a lot faster? What is this going to do?
▶ 1:03:44Ms. Bailey: I think making sure even at the v.a.'s that are not full-service, the legible enough in the community to know where should I send these people that know about als? That will treat my veterans the way they deserve to be treated, that will treat them like I would? So that is something to really think about when we are using the community care. It is an option, and I think it should stay an option but I don't think it should be our go to option for veterans.
▶ 1:04:12Sen. Hassan: I appreciate that very much. My son has a feeding tube and it was a neurologist who treats a lot of children with feeding tubes who figured out how to get encapsulated medication into the tube without clogging it. She also happened to be a mother. I think that played into it but it makes a huge difference. Mrs. ward, you discussed the need to fully implement provisions of the dole act which president biden signed into law at the start of this year.
▶ 1:04:43Sen. Hassan: I share your concern about the delayed implementation of the bill. Senator moran asked about oversight, but as someone with personal knowledge about the challenges of veterans and caregivers, can you tell us about how full implementation of the dole act would support caregivers and how its delay might affect you, your family and other veterans?
▶ 1:05:06Ms. Ward: Thank you for the question. I think the full implementation of the dole act would eliminate the sense that all these beautiful programs we have at the v.a., they are so siloed is what it feels like. How do I, how can I get home based primary care? Because I live in an area where I'm too far from the main durham v.a..
▶ 1:05:36Ms. Ward: Why can't fayetteville, where the wilmington area falls under, why can't they communicate with durham? Why can't I have that? Why is it hard to get better and directed care? We did get it, we finally got it but we are not going to use services we don't need right now. Just because we can get them. Nursing care fits for our situation, but what about palliative care? How do we get that?
▶ 1:06:05Ms. Ward: Does my coordinator know how to get palliative care? What about hospice? How can we set it up so this man I love so much can stay at home for the rest of his life? It shouldn't take so much work. My sense of working with some of the people at the v.a., they want to do the right thing. We have had a good experience with everybody we worked with at the v.a., but they don't know. This program from that program.
▶ 1:06:35Ms. Ward: My understanding of the bill is that those barriers aren't there. There are many barriers that somebody like me, who is well educated and experienced with the v.a., I sometimes can't get access to these programs. It is so tiring. I would just want to get a frappuccino somewhere. I'm not asking for much.
▶ 1:07:02Ms. Ward: I just want a little bit of peace and I want to take care of him at home. Whether my veteran has als or another spinal cord injury or traumatic brain injury, it does not matter. We should all be able to access care so we can keep doing what we do. It shouldn't be siloed like it feels like.
▶ 1:07:21Sen. Hassan: I appreciate that. Mr. thomas, I will submit questions for the record for you. I appreciate all of you being here. We value your service and expertise. Thank you.
▶ 1:07:34Chair Moran: Senator king?
▶ 1:07:38Sen. King: I have to acknowledge in the last five years I have lost two of my best friends to als, one was one of my oldest friends from high school football and one was one of my best friends, george smith, who battled this awful disease with courage. I can't not acknowledge these two guys that played such an important role in my life. Ms.
▶ 1:08:05Sen. King: Bailey, you said something, you touched on it briefly, that I find potentially important. That is the veterans seem to contract als at something like twice the level of the population at large. I will ask this of our second panel, are there theories on that?
▶ 1:08:27Sen. King: I have always viewed als as almost being struck by lightning, but this suggests there might be environmental causes that contribute to the contraction of this disease. Are there theories on this?
▶ 1:08:38Ms. Bailey: There are theories. Anything from the traumatic, a traumatic head injury, environmental exposures when they are overseas, there are lots of different theories but there is nothing concrete, which is why we need to support research that will dig into this a little deeper.
▶ 1:09:03Ms. Bailey: There have even been studies that show some specific occupations inside the military are up to 10 times as likely to be diagnosed. That is terrifying. My husband served in the army. My nephew just joined the army. I want to make sure that god forbid, if something happens to them, they are able to get the best care possible. And the research that can come from learning more about the veteran impact can go a long way in the civilian population.
▶ 1:09:35Sen. King: I think that is some research we should encourage. The v.a. Is the likely place to conduct that research. Mr. thomas, accessibility to long-term care. You touched on this in your testimony. My understanding is this is one of the greatest problem facing veterans. Is that true?
▶ 1:09:55Mr. Thomas: It is.
▶ 1:09:57Sen. King: You have any idea how many scid patients, veterans there are? In round numbers?
▶ 1:10:07Mr. Thomas: I will have to get back to you with the exact number. But I would say it is around 60,000.
▶ 1:10:16Sen. King: It is safely -- safe to say it grossly exceeds resources for long-term care. Is that correct?
▶ 1:10:23Mr. Thomas: Yes.
▶ 1:10:26Sen. King: We talked about the elizabeth dole act. I think I will join my colleagues asking for your thoughts perhaps in writing after this hearing, on how it is being implemented and not being implemented, where the gaps are. One of our roles here, often in our business we passed a law and it is like we have done our thing but I don't believe that.
▶ 1:10:51Sen. King: Part of our responsibility is to oversee the implementation, and execution, these laws. So it would be helpful to us to sort of survey your colleagues, your contacts and circle of friends in the community, to tell us how the law is working and how we can improve it and what we must do to improve it. The other thing that bothers me is, Mr. thomas, you mentioned onboarding and unfortunately at the v.a.
▶ 1:11:21Sen. King: There is a hiring freeze. There is hiring going on in certain areas, but the v.a. As of the end of this month I think will be 30,000 people less than it was at the beginning of this year. Do any of you see the staffing reductions as affecting the level of care and responsiveness of various v.a. Facilities with which you engage, Mr. thomas?
▶ 1:11:47Mr. Thomas: There has been a lot of lack of staffing on the scid centers for a while, but we do see that the quality of care is being maintained. But we do need nurses. We need a team to make sure our members get the quality care they need.
▶ 1:12:12Sen. King: One of you mentioned burnout. We need to maintain the quality people that we have and not burn them out because of understaffing.
▶ 1:12:19Mr. Thomas: I agree.
▶ 1:12:22Sen. King: Dr. hoover, I want to commend you for being here and providing your compelling testimony. We look forward to your response to questions after the hearing. Thank you. This has been powerful testimony and again, we can't fix problems we don't know about. So the invitation is for you to tell us what needs fixing, whether it is administrative or a matter of the law.
▶ 1:12:52Sen. King: Take advantage of the fact that you have a group of senators here who are totally committed to this issue and its amelioration and litigation. So thank you for your testimony. .
▶ 1:13:02Chair Moran: Senator king, thanks for the summary and I recognize senator duckworth.
▶ 1:13:08Sen. Duckworth: Thank you to the witnesses who are here today. As you know, this committee earned a long standing reputation for prioritizing pragmatic bipartisanship. It is a commitment we should strive to achieve. Prioritizing bipartisanship is critical amid attacks on america's cities and while ice is actively stealing U.S.
▶ 1:13:36Sen. Duckworth: Department of defense and department of veterans affairs resources away from the core mission to support the invasion of chicago. At hines va hospital, my v.a. Home where I get my care, it suffers from limited parking that is inadequate for the level of patient demand. Any veteran who goes to a va hospital shares the frustration across the country of inadequate parking.
▶ 1:14:01Sen. Duckworth: Ice has taken over 12 parking spots of operations at heinz v.a., nothing to do with providing veterans with care and this is causing anxiety, diverting v.a. Resources for these paramilitary enforcement operations, it will likely -- likely harm care delivery.
▶ 1:14:23Sen. Duckworth: Veterans should be able to safely access their health care services without fear of intimidation, harassment or detainment and it is absurd to believe that -- will not adversely affect the degree of care for their patients. The v.a. Must establish clear strong policy against capitulation to ice. Veterans and their family members need to be protected.
▶ 1:14:52Sen. Duckworth: Otherwise I am deeply concerned that patients will delay or cancel appointments due to well-documented risk that they will be accosted and out of control paramilitary force and whisked away in unmarked vans solely because of the color of their skin, what they look like, race or the language they speak.
▶ 1:15:10Sen. Duckworth: We also -- worst suspicions about the trump administration, namely the president trump has sabotaged v.a.'s ability to carry out its mission and actively working to manufacture a crisis to justify privatization of the v.a.. Earlier this year, v.a. Cut 80,000 jobs including doctors and nurses. A recent article reporting on the consequences of this disruption noted and I quote, the v.a.
▶ 1:15:38Sen. Duckworth: This year is down more than 600 dockers and about 1900 nurses. The number of doctors on staff has declined each month since president trump took office. The agency also lost twice as many nurses as it hired between january and june. The v.a. Said it is working to address this including by referring veterans to private providers and telehealth appointments.
▶ 1:16:01Sen. Duckworth: Mean what -- meanwhile, waiting times for patients seeking specialized care is increasing and I'm greatly concerned that the trump administration dismantling of v.a.'s capabilities and capacity is intended to create chaos to achieve two goals. First they want to accelerate v.a. Dependency on private providers and they want to degrade v.a.'s quality of care to justify privatizing the largest integrated health care system in the nation.
▶ 1:16:27Sen. Duckworth: Back during trump's first term, we know he is surrounded by wealthy donors who would love nothing more than to dismantle v.a. And force all veterans into the often more expensive yet less effective private sector health care system. After all, v.a. Providers are trained to address the unique needs of veterans and this is just not true for most non-v.a. Providers. A non-ba provider may look at a veteran and see they have prostate cancer but not check for heart disease or leukemia.
▶ 1:17:01Sen. Duckworth: Instead of siphoning resources away from v.a.,, due to the republican biggest medicaid cut in history, we should be upgrading facilities and technologies to strengthen v.a. Delivery of care. To all of the panelists, what specific steps should the v.a. Take to ensure there are enough providers and accessible facilities for veterans? What any of you like to answer?
▶ 1:17:32Sen. Duckworth: -- would any of you like to answer? Do you have any steps you think the v.a. Should be taking to support spinal cord injury patients through providers as well as access to facilities? -- >> stop any hiring freezes or caps, support additional hirings. Those of the biggest steps you could make.
▶ 1:18:02Sen. Duckworth: It is hard to serve our veterans with their hands target -- tied behind their backs right now and that is what it feels like they are doing.
▶ 1:18:13Sen. Duckworth: Thank you. Thank you Mr. chairman.
▶ 1:18:17Chair Moran: Senator duckworth, thank you. I would like to ask a couple of questions myself. Unless there is concern about being left out? I wanted to capitalize on a couple of things.
▶ 1:18:35Chair Moran: Community care, these circumstances, in which it makes sense to refer to a program, a hospital, a set of physicians that have expertise in this arena? Does it make sense for the v.a. To allow for a referral to community care?
▶ 1:18:57Mrs. Ward: I would like to speak to that. We have an excellent als center at the duke clinic. Including experience for someone with als, they do have clinic rooms that are large enough to support not just someone in a wheelchair but for family members to come along. They stay in that room for hours. Every specialty comes to see them.
▶ 1:19:33Mrs. Ward: It is exhausting as an experience. It is a great experience because you get great staff but trying to get a community care referral, you have to get one from each specialty that is there. That is a lot of work to get it to come together, so that you have a referral for every specialty care health care provider that comes into that room. For us personally, we use medicare because it is easier. Is it the right thing to do? Probably not.
▶ 1:20:04Mrs. Ward: We should probably go through the v.a. To make that happen, but it is hard to do that. I personally don't want to go through all of that.
▶ 1:20:11Chair Moran: I appreciate that. It seems to me that is not a damming thing about the referral to community care but a damming thing about the way we refer it. If we can get the referral fixed, that would be an improvement and you would have the level of expertise and accommodation of all the services in one location, that might make sense for a particular veteran.
▶ 1:20:37Chair Moran: Because the standard of community care is what is in the best interest of the veteran to be determined by the veteran and in some instances, there may be a program or a set of doctors or a continuum of care that might make sense and I want to make sure that if that is the case, that is a possibility. Mr. thomas, let me conclude my questions with a follow-up to something that has been said in response to my colleague's questions.
▶ 1:21:07Chair Moran: The issue of the access act, one of the things that occurred, one of the reasons that is true is because we addressed concerns regarding va's referrals to community providers who are ill-equipped.
▶ 1:21:30Chair Moran: We heard testimony today about this being a new thing to a neurologist, training and als patient and the pva advocated for the access act provisions to address this issue with referrals to people who are ill-equipped to handle a referral. Is that true and do you have anything to say about that?
▶ 1:21:55Mr. Thomas: I would say that is true. It is hard when you get a referral and go into the community, that individuals need to be able to choose who they want to choose. We need to be referred to doctors that truly understand the aspect of what sei entails on the body.
▶ 1:22:30Mr. Thomas: When referred to the community, most don't understand that.
▶ 1:22:32Chair Moran: That makes sense to me but I do want to highlight, it is my understanding that the access -- includes language that federal organizations including the p.v.a. -- that deals with concerns about referral to someone who shouldn't be referred to because it is a new experience and a new field for them. Same field I guess but a different kind of patient or circumstance.
▶ 1:23:01Chair Moran: We want to make sure the referral is to a provider that provides the expertise and experience that is actually helpful to the veterans. We will continue to work on that but I think as part of our efforts in the access act tool to improve that circumstance. I think you all very much.
▶ 1:23:23Chair Moran: Thank you for being such advocates, I recognize that in instances here, it is difficult to be here, to be away, and we appreciate you taking the time. It demonstrates the love you have and for people you don't even know because you want the system to work, you want the v.a. To work and you want the process to care for those who served our country. I thank you for your presence. We will call up the second panel in just a moment. Thank you all for being here.
▶ 1:25:38Chair Moran: Going to call to the table the second panel. Testifying today this afternoon and almost this evening, on the second panel is Dr. erica scavella. She is the assistance -- assistant undersecretary for health at the U.S. department of veterans affairs. I'm going to use my prerogative and ask you to introduce who you are accompanied by.
▶ 1:26:09Dr. Scavella: Thank you so much. Good afternoon chairman moran, ranking member blumenthal and members of the committee. Thank you for the opportunity to testify today. Joining me today is Dr. manosha wickremasinghe. She is executive director of the v.a. Spinal cord injuries and disorders care.
▶ 1:26:31Dr. Scavella: Our mission is to address not just the immediate needs but also the long-term challenges and opportunities facing the veteran community affected by spinal cord injuries and disorders. As we recognize the unique and evolving needs of veterans living with scid, our response continues to center on specialized comprehensive care.
▶ 1:26:56Dr. Scavella: These complex conditions require individualized appropriate -- approaches and our commitment is to leverage the full depth of v.a. Resources and compassionate expertise to optimize the quality of life are all veterans. V.a.'s scid system of care is the nation's largest most comprehensive integrated health care system dedicated to treating individuals with spinal cord injuries and disorders. Our hub and spoke system enhances health, well-being, functionality and quality of life for over 24,000 veterans.
▶ 1:27:33Dr. Scavella: We strive to provide care that considers the whole person. Acute care, primary and preventative care, and long-term support. Annual comprehensive evaluations focus on health promotion, complication prevention and early intervention, addressing the evolving needs related to scid at any age.
▶ 1:28:01Dr. Scavella: To support veterans and their communities, our scid system of care includes the scid home care program. Members of interdisciplinary teams are available to support the transition and help your needs with veterans with scid in the home or community in addition to the scid home care program, the v.a.
▶ 1:28:21Dr. Scavella: Scid system of care leverages home and community-based services such as skilled home health care, homemaker home health aide and veteran directed care to ensure eligible veterans receive care comfortably within their home or the community. Recent legislative progress has enabled v.a. To expand support for veterans with complex medical conditions.
▶ 1:28:48Dr. Scavella: Section 120 of the 21st century veterans health care and benefits improvement act raises the maximum per veteran expenditure cap for home and community-based services from 65% to 100 percent of community living center costs while allowing exceptions for diagnoses such as scid.
▶ 1:29:14Dr. Scavella: These changes directly translate into expanded options for home-based care and greater financial flex ability -- flex ability -- flexibility. V.a. Is working to expand scid long-term care capacity with two funded construction projects in north texas and the v.a. San diego health care system. Both have had existing scid acute and sustained dissenters.
▶ 1:29:45Dr. Scavella: Once completed, this will bring the total number of v.a. Scid long-term care centers to eight. Ensuring the availability of high quality and long-term care for veterans with scid is a prominent challenge and one that remains central to our resolution, our resource allocation. Removing barriers for veterans with scid requires ongoing investments and adapting equipment and technology. In fiscal year 2024, v.a.
▶ 1:30:15Dr. Scavella: Processed more than 5000 claims for vehicle conversions, controls and entry exit ramps empowering safe and -- with service -- v.a.'s scid system of care and office of advanced manufacturing have partnered to ensure veterans have access to cutting-edge manufacturing technologies such as 3d printing and health care.
▶ 1:30:44Dr. Scavella: These technologies allow for faster innovation and improved access to personalized health care solutions for veterans. V.a.'s scid system of care continues a tradition of quality improvement and performance measurement. These efforts have improved outcome measurement. V.a. Has a standardized documentation for the functional mobility assessment. This allows v.a. To it -- to evaluate veteran satisfaction with mobility and access.
▶ 1:31:15Dr. Scavella: Chair moran ran, ranking member blumenthal, this concludes my testimony. V.a.'s scid system of care is committed to delivering high-quality care, ensuring veterans receive the care they deserve. My colleague and I are prepared to answer your questions.
▶ 1:31:30Chair Moran: Thank you very much. I'm going to call on senator king to begin the questions.
▶ 1:31:36Sen. King: I appreciate the courtesy. I want to thank both of you for being here. There was a lot of praise for the v.a. On this panel. I think the consensus was that the veterans that have these scid afflictions for the v.a. Treatment system and I hope you will take that back to your colleagues.
▶ 1:32:03Sen. King: I do want to follow-up on the comment that miss bailey made about als affecting veterans in a greater proportion of the population. I hope that is something that will provoke some serious research. It strikes me that could be a very promising area of research, and also if something is dangerous for our veterans, we should know it. Dr. scavella, is that something you plan to pursue?
▶ 1:32:32Dr. Scavella: Thank you for that question. We are aware of the increased propensity of veterans to develop als and that is included in our ongoing research to determine both presumed and causative agents. We have some thoughts on that. There is ongoing research into that but we do know there is a correlation between having served in developing als.
▶ 1:32:58Dr. Scavella: That is something in the literature, something that our office of research and development is looking at.
▶ 1:33:04Sen. King: I could have enormous benefits if we can nail down a possible cause for a future breakthrough for thousands of people. My second question and I apologize that I have to leave. Last fall, the v.a. Indicated an interest in false prevention.
▶ 1:33:31Sen. King: Which of course contributes to these kinds of spinal cord injuries as well as traumatic brain injury. You were going to establish a falls prevention program. Is that still in the works?
▶ 1:33:46Dr. Scavella: Thank you. False prevention, I've been a clinician with the v.a. Since 1999. False prevention has been an ongoing effort. There may be some renewed tension to that. We want to make sure veterans are not falling in our facilities and in their homes so that is something that is ongoing. I would be happy to take that back to get you details on anything that is new that is being done.
▶ 1:34:13Sen. King: I appreciate that. One out of four people over 65 suffer a serious fall. It costs the economy $85 billion a year. This strikes me as low hanging fruit in terms of health care costs, let alone the trauma to families and individuals that are afflicted by traumatic brain injuries, spinal injuries and so on. I hope you will take that back, and lets up the emphasis.
▶ 1:34:49Sen. King: Ms. wickremasinghe, how did I do?
▶ 1:34:56Dr. Wickremasinghe: Very well.
▶ 1:34:58Chair Moran: You are braver than I am.
▶ 1:35:01Sen. King: You heard the testimony and -- please describe the strategy for dealing with these serious injuries, these scid afflictions.
▶ 1:35:20Dr. Wickremasinghe: Thank you for that question. The v.a. Scid system of care has 25 dedicated scid centers and over 120 spoke signs, facilities that don't have scid centers. These provide local primary care in scid informed care.
▶ 1:35:45Dr. Wickremasinghe: Within our centers, we have large interdisciplinary teams that manage the complex care needs of our veterans, ranging from acute rehabilitation to ongoing care of secondary medical complications.
▶ 1:36:06Dr. Wickremasinghe: We provide respite care, we have outpatient clinics, we have dedicated scid home care programs, and we have dedicated scid long-term care centers unique to v.a.
▶ 1:36:24Sen. King: Thank you very much. I appreciate the outline and I appreciate the work you are doing and I hope you were taking notes during the prior testimony. Thank you very much Mr. chairman.
▶ 1:36:37Chair Moran: You are welcome. Dr. scavella, to follow-up on senator king's closing comment, you heard the testimony that occurred just moments ago. What is your take away? We heard correctly that there is lots of praise and appreciation for the v.a. And its capabilities in dealing with veterans and their caregivers, but what did you learn that you at the v.a.
▶ 1:37:04Chair Moran: Should be doing differently or better and was there something you wanted to highlight for this committee that we ought to be doing to help you accomplish that?
▶ 1:37:13Dr. Scavella: Thank you for that question. I would say that we are very proud that we are partnering with each of the folks on your first panel. We worked extensively with Dr. hoover to improve the care that is being provided for patients with als based on direct input.
▶ 1:37:34Dr. Scavella: She in her testimony did name one of the two positions that we were able to assign to assist with ensuring that her voice and other voices are known. Mrs. ward, miss bailey and Mr. thomas also talked about the extensive partnership that we've had.
▶ 1:37:55Dr. Scavella: I'm very pleased to hear their testimony today, and we look forward to continuing to work with them to learn about what is not working, what we can improve upon and anything new that comes up as health care evolves and innovates.
▶ 1:38:10Chair Moran: Let me raise a couple of topics. Congress has allocated a full amount of funding that the v.a. Has requested for medical services. Has there been any hindrance in making certain that scid systems of care receive necessary funding to provide the complex level of care needed for these veterans? The v.a. Asked congress in their budget for this amount of money.
▶ 1:38:41Chair Moran: We appropriated this amount of money. The v.a. Has that. Is it getting to the care and treatment programs, the programs for these veterans that were described today?
▶ 1:38:50Dr. Scavella: We are not aware of any challenges. I know that there was a focus in the previous panel about staffing. It has been made clear and we communicated that we have an exemption for the caregivers providing direct patient care in our system, including clinicians, nurses and physicians, includes social workers and folks who make sure that the space is clean and safe
▶ 1:39:20Dr. Scavella: For veterans to receive care. In my understanding, we have adequate funding and are able to use those funds appropriately. When looking at our staffing from september 2025 and comparing it to a year ago, it appears as though we have the same exact number of staff assigned to spinal cord injuries and disorders where there may be some differences in the categories and we will be happy to take that back to make sure that we are still meeting the
▶ 1:39:52Dr. Scavella: Intent.
▶ 1:39:53Chair Moran: It's been brought to our attention that -- commentary is the way I would describe this, that the v.a. Spinal cord injuries and disorders system is understaffed and it is the challenge of hiring and retaining highly skilled providers, particularly in rural areas.
▶ 1:40:18Chair Moran: I think you just testified that the same amount of staff in this arena within the v.a., it is the same as it was a year ago. Are there differences, different challenges depending on where those programs are located or where the veteran resides?
▶ 1:40:32Dr. Scavella: We know that there can be some challenges but with health care in general, not just with v.a., for both attracting, recruiting and retaining the talent that we need to provide the skilled care. We do have a number of modalities I will let Dr. wickremasinghe outline.
▶ 1:40:53Chair Moran: Thank you very much.
▶ 1:40:56Dr. Wickremasinghe: Thank you for the question. We recognize that providing care to our veterans located in rural areas is critical. We rely on transportation and telehealth.
▶ 1:41:19Dr. Wickremasinghe: In addition to our clinics which really enhance our outreach, our clinics are located in areas closest to where our veterans live. That in combination with telehealth and transportation really is where the money is.
▶ 1:41:47Dr. Wickremasinghe: When trying to reach our rural veterans. For example with telehealth, we have the v.a. Eastern colorado health care system. That has expanded rural health care to v.a. Black hills, a health care system. So we have specialists who can dissipate in appointments with the veterans who are served at fort meade and south dakota.
▶ 1:42:16Dr. Wickremasinghe: This is occurring in many v.a.'s . In addition we have tele-mental health. We have interdisciplinary teams within our centers, psychologists specialized in the care of veterans with scid, participating through tele-mental health to reach our veterans. A third example would be our tele-wound programs.
▶ 1:42:48Dr. Wickremasinghe: Veterans with spinal cord injuries many times have skin conditions resulting in pressure injuries, and instead of having our veterans drive in for follow-up appointments, we are able to use 3d imaging and cameras to see the wounds in real time and have our clinicians monitor progress.
▶ 1:43:14Dr. Wickremasinghe: It also allows us to bring our veterans into our centers sooner than later when we see any changes.
▶ 1:43:21Chair Moran: Thank you. I'm going to ask another question and then turn to senator blumenthal. I will continue with your doctor. How does -- we heard the circumstance described by our first panel, about lack of knowledge of programs, where to go and that thing. The silos within the v.a.
▶ 1:43:44Chair Moran: That make continuum of care a challenge, necessary components of care to be coordinated. What would you tell me about that, whether it is a problem, a challenge, how is it being addressed? What would you tell the panel about that?
▶ 1:44:08Dr. Wickremasinghe: Thank you. I'm not able to speak for the als system of care. Within the scid system of care, we provide an interdisciplinary comprehensive lifelong continuum that I mentioned earlier, with our senator.
▶ 1:44:32Dr. Wickremasinghe: I can take that back for the record and get that information to you through the subject matter experts.
▶ 1:44:41Chair Moran: What does the v.a. Do to educate and help connect veterans with opportunities to participate in clinical research trials?
▶ 1:44:50Dr. Wickremasinghe: V.a. Is a nation leader in health care research. We currently have about 27 v.a. Funded trials and projects, focused on veterans with spinal cord injuries and disorders.
▶ 1:45:12Dr. Wickremasinghe: For example, the rehabilitation research and development gordon mansfield spinal cord consortium located in california works with many v.a. In the ucla branches to focus on stem cell research.
▶ 1:45:35Dr. Wickremasinghe: We also for example in west haven, connecticut, we have a rehabilitation research and development center, focused on addressing neuropathic or nerve pain, chronic pain that affects many veterans with scid. And so on and so forth. I could provide much more detailed information for the record as well.
▶ 1:45:59Chair Moran: Thank. Senator blumenthal.
▶ 1:46:02Ranking Member Blumenthal: Thank you both for your service. Let me ask you, how have the cuts in numbers of workforce affected the work you do? What number have you lost?
▶ 1:46:19Dr. Scavella: Thank you for that question. I don't have the current data on attrition rates. I can tell you in reassuring that within our direct patient care, that there are exemptions in place to make sure we are not affecting the ability to provide care in our facilities.
▶ 1:46:40Ranking Member Blumenthal: So you have been affected or not? I want to understand your answer.
▶ 1:46:48Dr. Scavella: I'm not aware of any effects related to staffing in patient care.
▶ 1:46:54Ranking Member Blumenthal: Have you lost staff?
▶ 1:46:57Dr. Scavella: I'm sure we have lost and gained staff.
▶ 1:47:00Ranking Member Blumenthal: But you don't know how many?
▶ 1:47:02Dr. Scavella: We do not have that number but I would be happy to take it back.
▶ 1:47:07Ranking Member Blumenthal: You don't have an estimate?
▶ 1:47:09Dr. Scavella: I don't.
▶ 1:47:11Ranking Member Blumenthal: You have no ideas?
▶ 1:47:13Dr. Scavella: I would rather not give a number that is inaccurate.
▶ 1:47:16Ranking Member Blumenthal: I have to say, I'm disappointed that you don't have at least an estimate given that you are responsible for this whole department. Do you have an estimate --
▶ 1:47:42Dr. Wickremasinghe: I would have to take that back for the record. I did not have the data on hand.
▶ 1:47:49Ranking Member Blumenthal: How many nurse vacancies in scid are there right now?
▶ 1:48:02Dr. Scavella: We don't have that data.
▶ 1:48:05Ranking Member Blumenthal: I am stunned. You don't have an answer? How many vacancies?
▶ 1:48:13Dr. Scavella: I don't have that data in front of me and I would not want to give in inaccurate number.
▶ 1:48:18Ranking Member Blumenthal: How many occupational therapist vacancies are there?
▶ 1:48:23Dr. Scavella: I don't have that data.
▶ 1:48:25Ranking Member Blumenthal: How many Dr. vacancies?
▶ 1:48:27Dr. Scavella: I don't have any data related to whether we are above or below the recommended staffing for any of the specialties.
▶ 1:48:37Ranking Member Blumenthal: Any vacancies now for nurses? In january of this year?
▶ 1:48:45Dr. Scavella: I do not have that data in front of me.
▶ 1:48:49Ranking Member Blumenthal: Let me posit, let me assume that staff are necessary to services. Correct?
▶ 1:49:00Dr. Scavella: Correct.
▶ 1:49:02Ranking Member Blumenthal: So the number of staff would you related to the quality of your services.
▶ 1:49:10Dr. Scavella: Perhaps I can explain a bit. We have over four hundred thousand employees in veterans administration, the department of veterans affairs. I don't have data on those fluctuations.
▶ 1:49:23Ranking Member Blumenthal: I'm talking about scid, not the whole administration. Talking about dealing with those issues.
▶ 1:49:33Dr. Scavella: As I testified, it appears as if our staffing within scid remains flat compared between september 2025 and 2024. I don't have information about potential fluctuations in the types of staff that may have composed of that number.
▶ 1:49:54Ranking Member Blumenthal: Don't you kind of monthly or quarterly assess what the recommended numbers are? You don't do a monthly report or any regular reporting?
▶ 1:50:09Dr. Scavella: We do monitor our staffing. I don't have that number in front of me today. Provide me those numbers, vacancies for scid nurses, recreational nurses, doctors and other staff, month by month to the present since over the past year.
▶ 1:50:36Dr. Scavella: Thank you, we will do that.
▶ 1:50:40Ranking Member Blumenthal: When do you think you could have that?
▶ 1:50:46Dr. Scavella: I think we would need to confirm to make sure we've got the data available and how soon that would be. But we will commit to getting that information back to you.
▶ 1:50:58Ranking Member Blumenthal: Did you discuss with anyone at the v.a. The possibility that you would be asked about these numbers?
▶ 1:51:05Dr. Scavella: I focused on the total numbers within the system. I did not focus on the breakdown.
▶ 1:51:11Ranking Member Blumenthal: Did you talk to anyone at the v.a. And preparing to come here today, about questions related to staff?
▶ 1:51:21Dr. Scavella: That is why I have that number being the same as september 2024 and september 2025.
▶ 1:51:37Ranking Member Blumenthal: Are people still leaving the v.a. In your department?
▶ 1:51:46Dr. Scavella: I speak for thousands of employees that don't just include scid so there is attrition and there is recruitment, so there is fluctuation every day in our staffing.
▶ 1:52:00Ranking Member Blumenthal: Are you hiring?
▶ 1:52:02Dr. Scavella: We are hiring.
▶ 1:52:04Ranking Member Blumenthal: Are you hiring more than you are losing?
▶ 1:52:07Dr. Scavella: I don't have that data in front of me.
▶ 1:52:11Ranking Member Blumenthal: How about cancellation of contracts. Do you have that? Companies outside the v.a.?
▶ 1:52:18Dr. Scavella: I'm going to defer to Dr. wickremasinghe about any contracts related to scid.
▶ 1:52:24Dr. Wickremasinghe: Thank you for the question. At the national level, we don't have contracts affecting our scid system of care but I cannot speak for each of our facilities so I would need to take that back for the record.
▶ 1:52:40Ranking Member Blumenthal: The hubs and centers have contracts?
▶ 1:52:44Dr. Wickremasinghe: I don't want to misspeak, so I would need to take that back for the record to find out more.
▶ 1:52:53Ranking Member Blumenthal: You don't know -- to the hubs and centers report to you?
▶ 1:53:01Dr. Wickremasinghe: At the national level, I oversee policy and the more detailed operational involvement, including contracts. Many times that is at the local level. The facility level and some of those contracts are national contracts as well but I don't have that information.
▶ 1:53:27Dr. Wickremasinghe: I would need to take that back for the record to make sure we are providing the most accurate information.
▶ 1:53:33Ranking Member Blumenthal: My understanding is that you provide services to the hubs around the country. Correct? 25 centers around the country?
▶ 1:53:52Dr. Wickremasinghe: That is correct. We have 25 dedicated scid centers in our v.a. Medical centers.
▶ 1:54:00Ranking Member Blumenthal: Do they do contracts with private entities?
▶ 1:54:07Dr. Wickremasinghe: I am not able to answer that question because that is not something that I am directly tracking or involved with, so I would need to take that back for the record.
▶ 1:54:25Ranking Member Blumenthal: I am perplexed. You are in charge of policy which means meeting basic needs of individuals served by those 25 scid centers and you are saying you don't know whether they have contracts with service providers outside of their entities and you don't know whether at the national level there are contracts?
▶ 1:54:54Dr. Wickremasinghe: That is correct senator because contracts don't fall directly under my office.
▶ 1:55:01Ranking Member Blumenthal: You would know, what is the nearest one to connecticut? Boston?
▶ 1:55:11Dr. Wickremasinghe: Yes.
▶ 1:55:13Ranking Member Blumenthal: So you would know in boston, we have a certain kind of rehabilitation service that is provided by a contractor.
▶ 1:55:24Dr. Wickremasinghe: In boston we have a scid center, and that center operates under the national guidelines and standards set forward by v.a.. We have directive 1162 which provides the standards for care of veterans with spinal cord injuries and disorders.
▶ 1:55:50Ranking Member Blumenthal: I hope you can provide some information. I have been unhappy with the ways of implement in the rollback and as I expressed earlier, I repeated those concerns. The v.a. Touts its implementation as a success. Do you regard it as a success?
▶ 1:56:22Dr. Scavella: Thank you for that question. We are happy to have the provisions set forward in the dole act which will address several concerns that were raised during this hearing. We are grateful for section 120 which will help us through some challenging situations our patients have been facing, so we are happy for the provision.
▶ 1:56:51Dr. Scavella: I can't comment on needing more staff if I don't know what the current staffing is capable of providing so again, I would like to get back to you with the accuracy of what has been implemented, how it has been implemented as well as whether or not we do have any staffing challenges within the fact that we appear to have flat staffing.
▶ 1:57:13Ranking Member Blumenthal: What I'm hearing you say is you don't know whether you have enough staff to implement it successfully.
▶ 1:57:21Dr. Scavella: That is not what I meant to say. I would like to make sure that as I am answering a question about a new provision or legislation, that we are currently implementing --
▶ 1:57:34Ranking Member Blumenthal: You are not prepared to answer.
▶ 1:57:37Dr. Scavella: I want to make sure I am providing accurate information.
▶ 1:57:46Dr. Wickremasinghe: Thank you for the question. What I know is that v.a. Is pursuing value-based care to address the dole act.
▶ 1:58:08Ranking Member Blumenthal: I'm going to finish my questions at this point. It is not a failing to say we would like to have more staff. The reason I am asking these questions is the v.a.
▶ 1:58:25Ranking Member Blumenthal: Has lost thousands of dedicated hard-working members of its workforce and my educated guess is that has happened in your department and it is not your fault.
▶ 1:58:50Ranking Member Blumenthal: It is the result of decisions made by elon musk, tech brose, secretary collins in the trump administration. -- and the trump administration, that has taken a chainsaw.
▶ 1:59:16Ranking Member Blumenthal: It is the chainsaw that elon musk touted as he paraded on a stage and it has affected your workers, but even more so the brave veterans who are struggling with als and other spinal cord injuries and that is a tragedy for our country. So I hope you can provide more information that will enable us to do better. Thank you Mr. chair.
▶ 1:59:45Chair Moran: Thank you senator blumenthal. There are no other questions. Therefore I want to again thank our witnesses of the first panel and now from the second for their testimony and our committee members and the audience for being here. The hearing record will remain open for five legislative days should any committee members want to submit additional statements for the record.
▶ 2:00:09Chair Moran: I asked our witnesses to respond to any questions that are provided for the record that once they are received, that they are answered in a timely manner. I would ask -- I think we are done. We will adjourn the meeting and thank you very much.