i went on to work for over 2 decades as a physician assistant before retiring prematurely due to complications of multiple sclerosis. as my disease progressed i experienced significant difficulties with mobility, fatigue, and i rely upon a power wheelchair and walker at home. for conversations with veterans i learned a mess was a medicaldi condition the v.a. recognizes a

service-connected disease and with the assistance of paralyzed veterans off america, i could sexily file a claim and now rated 100 percent service disabled due to ms. as my symptoms progress i relied more on the assistance of my wife, lisa. it can vary dramatically although most days are good days iti can function independently if i have a flareup or exacerbation i can be temporarily incapacitatedse times i rely heavily on the staff for assistance with a variety of activities including intermittentil catheter, toilet, hygiene caet, hygiene, dress ing and meal prep. no fewer of 3 3 episodes this year. prior to leaving the workforce she was working as a case manager for keystone community resources but as my condition deteriorated she decided to retirere early, position age 61 to

become a full-time caregiver. around this time, primarily through a process of self education and online resources we learned the program of comprehensive assistance for family caregivers. we applied with eligibility open to all service areas october 2022. unfortunately we were denied. as i understand it we were denied due to the determination but i did not require assistance with performance of certain activities each time it was performed that the level of assistance was not rising to the level required to participate. the strict interpretation of the eligibility criteria is a concern to veterans like m myself. those whose symptoms are highly variable and predictable lisa was enrolled into the program of general caregiver support

services. however this transition was not automatic and we went for some time thinking we were enrolled in the general program although we were not. 1 of the most valuable benefits of the program of comprehensive assistance is availability of medical insurance corage for caregivers to the civilian health and medical program through the departments of veteran affairs this is the only way we could afford for lisa to retire early she qualified for coverage due to my permanent and total disability rating so we did not have to rely on the benefit the program a general caregiver support services offers fewer benefits but 1 significant benefit is respite care. we utilize this when she underwent surgery and they arranged for me to be admitted to the community living center

on her to recover from her surgery. she knew regardless of what was happening with mys be health i was being cared for so she could focus on her i cannot emphasize enough how bl important this respite benefit care was to her family and comforting to know it will be there if we need in the future. throughout this journey our goal has been to create an environment that allows me to live in her home as long as possible and to avoid the need for long-term care. participation in the v.a. caregiver program helps us to achieve that goal. the reality is with my current level of disability is such i'm no longer able to live independently and would require placement in the assisted living facility if not for lisa's efforts. would like to make it clear that we remain very grateful for all the benefits we have r received

and continue to receive. to show my gratitude i currently serve as a red coat ambassador at the v.a. medical center. a volunteering i can help other veteransor navigate services and give back to the organization that has done so much for me. the system is not perfect and there will always be room for improvement. encourage the committees to work seamless transition following denial and to better communicate resources and benefits available to veterans and value the work of caregivers and pass leal security credit to caregivers who have left the workforce prematurely to care for loved ones. thank you for this opportunity to share experiences and look forward to answer any questions you may have. >> thank you for your testimony. we are grateful you are here. next day turned to the chairman for his introduction.

spent the n next witness is from montana and her husband sustained traumatic brain injury while serving in iraq and she serves as his caregiver full-time she is elizabeth tool foundation alumna and an advocate spokesperson of mental health issues associated with brain injury. it's not a short trip from montana to washington dc. thank you for being here. >> the third witness is an advocacy navigator for the quality of life foundation wounded veteran family care program. after her husband sustained

injuries in iraq she became his caregiver and an advocate for those for other wounded warrior families. thank you for being here today and sharing your experiences with us. next return to ranking member scott for the next introduction. >> of the privilege of introducing the executive director of the long islandng state from stony brook university 350 beds a skilled nursing facility was honorably discharged veterans with the surf first vice president national association of state veteran is that a board member of the national council certified dementia practitionersen practitioners. thank you for being here. >> the fourth and final witness is the national policy director for the elizabeth tool foundation o dedicating over 20 years to the veteran caregiver

and military communities we appreciate you being with usus today. >> chairman and ranking members distinguish members thank you for allowing me to testify today i have been married to my husband 20 years and 418 and a half i have also been his caregiver. 2 in 2005 a 23 -year-old montana guardsmen activated to army infantry and deployed in iraq. may 4th during routine patrol he was struck by the ied the fifth roadside bomb to hit a vehicle since his arrival in november left it disabled and not the squad members unconscious.on

upon regaining consciousness and exiting the vehicle they came under heavy sniper fire. striking her caliber round. his ribs and ricocheted to his torso before launching near the spine he survived thanks extra ordinary efforts of medics and doctors in the vac team. upon returning to civilian life facing mobility for dramatic herniated disc as well as nerve damage and pain caused by scar tissue and suffered from migraines, seizures and hearing loss the cognitive impairments including functioning and memory deficits posing significant challenges. in 2016 after a decade of limited success prescriptions designed to treat pts a -- -- ptsd the mri revealed 12 lesions on his brain some as large as a

dime confirming a significant tbi both which proper treatment and benefits had been delayed. throughout the past 12 years the v.a. program of comprehensive assistance for family caregivers p has been an invaluable resource for me as i navigated the complexities of kelly's care and providing the training and support and 2021 we are subjected to a grueling reassessment process for eligibility. a two-hour virtual appointment we had to painfully recount every limitation he faces a had to quantify everything i do as a caregiver over 2 decades that is difficult when the tasks are so integrated into her dailyo life. the resulting report was incomplete and inaccur.

missing critical information with the reading. despite efforts by the v.a. staff and me to correct the errors before review not all were corrected. the reassessment outcome is we do not meet eligibility criteria and i was dismissed from the program. the decision highlighted several issues. significant discrepancies between the veteran benefit administration and the health administration records leading to incompl informationin submitted in the reassessment reports. for example his gunshot wound injury coated with the vba diagnostic code for muscle injury due to the wound through the muscles was recorded in the vha record as superficial scars and back muscle impairment. there is no equivalent diagnosticno code in the system the rating for neurogenic's recorded in the vha as irritable

. more importantly the 70 percent rating for his tbi completely missing in the vha record. the reassessment process placed undue emotional strain and stress and i believe reassessment should only occuren when a veteran needs changes significantly. veterans with specific readings such as incompetency, should have presumptive eligibility for caregiving. was also apparent veterans receiving private care were disadvantaged and reassessment doing -- -- due to fewer records in the month preceding the evaluation. it does not equate to insignificant furthermore veterans with limited access to specialists where we are in real

montana were penalized because we don't receive routine evaluations with specialist. 19 year since his injury and over the years i have learned joint support for disabled veterans for their caregivers is incomprehensible the need for consistent and comprehensive care for veterans only intensifies moving caregivers could lead to more expensive care options including home health aides to the v.a. program utilizing home health aides to exacerbate the exacerbate the nationwide shortage of home health aides the availability of home health aides especially in rural areas like the small montana town which has a population of 68 thank you for allowing me to share my story

and the challenges we face i appreciate your commitment and i'm happy to answer any questions. >> thank you you to travel here we are benefit to hear your family story. >> members of the committee thank you for holding this hearing with the advocacy director what serving caregivers theat searcy veterans they have educational resources and 1 of the few organizations with clinical appeals. over the years legislation policy has evolved the original ivlegislation created the caregiver support program for 9/11 veterans it existed under

onthis regulation, legacy caregivers. the mission act of 2018 expanded eligibility to veterans of previous adopting new regulations in 2020 by march 2022 there was a high rate for eligible applicants for previous generations around 70 percent and legacy review denial around 80 percent of the product in march of 2022 and since then rewritten the regulation that no new regulation has been published. after the march 2022 hearing they can hold collaborative sessions to discuss what we thought saw as the problem with the regulation. however in the fall of 20 to the v.a. office generalco counsel stop these conversations undeclared

v.a. witrulemaking. and those that were given no guidance for what would be in the new regulation for the program. working with a committee of the stakeholder organizations of following items congress needs to clarify the mission is to recognize the fact providing services for their previously injured veterans that in the absence of a family caregiver to be required to be provided by the v.a. reminding the caregiver support program were for this serioly injured not severely injured. codified activities of daily living should only require regular r assistance to veterans are not denied any level for the

areas of which they need assistance and require that all medical providers give input and remove the language of the statute that states to the maximum extent possible on requiring such input. the duty to assist outside medical records and a pathway to advocacy to require v.a. to develop a program to navigate the veterans health administration on behalf of veterans and caregivers.eg mandate those veterans a assistance with all potential options for care all of these items are inlth care and benefits improvement act as well as listed in between the elizabeth all home care act and the care act.

examine financial security and senate bill the reeducation and reemployment and retirement act creates a pathway for caregivers to reenter the workplace and allowing them to contribute to retirement accounts and social security so they are not left destitute in later years. when testifying before congress they want to change to align with other programs. 1 lawmaker responded at the time i am concerned v.a. may attempt to justify c expense of our most vulnerable veterans other than working to expand the program. this is exactly what is happened. v.a. made it cheaper to run, harder to get into than the extended care programs a caregiver between eight dollars

-- -- around $8.60 an hour and the reimbursement rate goes from $31 an hour through $81 an hour. we are simply asking you to restore to 1 of support seriously injured veterans that have a need for assistance on a regular basis allowing family caregivers to supply care in thehe eshome to have better howls outcomes as well as cost savings for the government. with the healthcare improvement act and the veteran and retirement act supporting the caregivers and veterans have given their all should we honor their right with the caregivers of their choice?

the quality of love life foundation thank you for holding this hearing and will forward to answering any questions you may have. >> thank you for your testimony. >> ranking members and senators and members of the committee thank you for inviting the national association to testify ways to improve and expand support to aging veterans and caregivers. and all volunteer organization representing the interest of all veterans homes that combined operate the skilled nursing care programs 3 adult day health care and currently the legislative officer past president however my full-time job as executive director of long island in stony brook university serving

honorably discharged veterans and families providing approximately half of all federally supported institutional long-term care for veterans we receive less than 20 percent of the v.a. total nursing home caret. budget and it is clear the state home partnership has a tremendous value by leveraging matching state funding for mch the benefit of all veterans we serve although the veteran population is projected tore decline in future years there is always significant numbers of veterans who need traditional nursing home care we agree v.a. should expand home and community-based care it should be in addition to not a subtraction from facility -based care 1 of the most promising areas to expand is through the state care programs to maximize the independencend enhance quality of life as well as provided much-needed respite for family caregivers the long

island state veterans home is serving 75 veterans sixties a week monday through saturday and provide a full array of clinical services including physical occupational speech therapy nutritional counseling meals and recreational therapy as well as bathing and grooming and higher care may help to stabilize chronic medical conditions reduce emergency room visits and provide significant respite for and we can save a caregiver multiple trips for all the services to provide in 1 single visit at the state veterans home agile day health care programs for veterans and caregivers after graduating west point having a 27 year medical career mike had a severe stroke

and requiring hospital care facing the knowledge through physical therapy and extensive support for the rest of his life fortunately we are able to offer the option to enroll in the long island veterans home he receives intensive care and support 5 days a week while his spouse could return to work as a school nurse secure in the knowledge or loved 1 is in good hands during the

nd other federal agencies.

we look forward to continuing to work with you to ensure our veterans have greater access to a spectrum of long-term care options in the state veterans home program. that concludes my statement and i would be pleased to answer any and all questions that the members of the committee may have. >> thank youse for your testimony. we will conclude. >> thank you. chairmana chairman casey and tester and members of the committee thank you for the opportunity to testify today. my name is meredith and i met policy advisor for the dole foundation a nonprofit whose mission it is to strengthen, and powering on the support of the caregivers. working with these individuals every dayki we are keenly aware of the challenges, issues and the strength of the community we are honored totl serve. while we've outlined issues for consideration in the written testimony we want to focus on the urgency of the passage of

the veterans health care improvement act mentioned previously. without hesitation the t number one priority of the immediate iopassage of the legislation is not in exaggeration to say we hear from veterans and caregivers every day that are desperate for the support for the provisions in this bill. every day we weighed the oustruggle continues. ni will speak more about the legislation later in the statement regarding the program of comprehensive assistance it remains a significant concern among all generations. articulating the program's current challenges in the written testimony we are proud to sponsor the specialized appeals with respect to the anticipated regulations outlining new eligibility requirements the legacy caregiver code word yet again faces uncertain futures. many have endured multiple regulation leadership changes and a lack of previous program

standardization. the emotional toil and financial uncertainty by the stability weighed heavily on the caregivers and veterans and outlined. therefore congress to work with the relevant organizations to consider grandfathering the population except in cases of fraud, waste or abuse that would tallow the program to focus on the mission of supporting all generations rather than continue the division within the veterans caregiving community.ty we would like to commend for the efforts in the availability of caregivers and this served as a lifeline for many of the previously struggle without access to care therefore we encourage congress to broadenl access to mental health services to include those in the general caregiver support services. the va has many programs that when access to benefit better and caregivers. where available the program for example has high satisfaction rates across the country.

unfortunately despite being created years ago it's still not available in every va medical center for example a caregiver fellow 100% in 2019 almost five years ago mary found outs another high need veteran was involved in the direct event the process of trying to get enrolled and in the intervening she's been told repeatedly the program is unavailable despite the booming another veteran and another program. after effort and intervention the reversed course and was told they would try to enroll. she would be able to hire her own healthth aide and support to ensure they are meeting. this and cannot be this difficult. as a result of situations the rankings member was joined by others to introduce the home healthcare act and in addition

provided the program the legislation takes a holistic approach to ensure thiss and other relevant programs are offered appropriately staffed and communicated to caregivers. most notably the legislation increases expenditure are not institutional care this would allow the vulnerable caregivers the support they need to stay in their home. from austin texas in this hearing 1 caring for the service disabled veteran until his death in 2022. because of the cap we are constantly fighting to get the support so tom can continue to enjoy movie nights with the family of an gifts on christmas morning in high school graduation that happened in their living room so tom could attend comfortably. all of which he would have missed in the facility two hours away. it was his wish to be home with his family and she followed every day to make that possible. eventually the legislation that enjoys broad bipartisan support in both houses of congress and

the recently introduced into previously mentioned 8371. this overall package includes numerous provisions to and if it mth caregivers despite the separate from the chairman and ranking members of the veteran affairs committee as well as the chart of the committee all major veterans organizations and other advocacy groups that the decision has fallen victim to politics of the day and is plagued by the mischaracterization. to pass it without delay veterans into caregivers simply cannot wait any longer for this life-saving provision. thank you and we look forward to your question. >> thank you for the testimony and all of the witnesses. we turn to questions i will start. i'm grateful you're here and

offering insight into how you unlace that navigated caregiving for both services and supports. you shared that afternoon infectionn during the overseas tour in south korea you contract a virus that is known to cause a progressive form of multiple sclerosis and some people. unfortunately, you are now dealing with the daily challenges associated. after a long battle with the va, you were eventually deemed to have a 100% service connected disability. like so many others, you have good days and bad days. even on your good days you still require a level of assistance. you shared that you applied for the program comprehensive assistance of family caregivers and were denied. do you feel that the assessment

adequately considers your needs? >> clearly we were disappointed when we received the determination. it's certainly our opinion it eliminates many veterans from participating in programs like the comprehensive program in particular. simply by not requiring assistanceti with certain activities daily living each time that activity is performed. i clearly think there's room for improvement and i think that will summarize best when she recommended the change every single time a veteran performs that particular activity. thanks very much and i will turn next.

in the work you've done as a caregiver you told us that a professional home care workers are not an essential part of your husband's care team and support team and also told us that it's often hard to find and keep these workers. we hear about that a lot. this is a story that i hear all too frequently back home and that it really is a care crisis across the board i've introduced several bills to increase and these would benefit older adults and people with disabilities and also support the family caregivers left with little support without access to the services. i would ask you to tell us what does that mean for you and your family when you are not abl to find a home care worker and what steps can we take here in the

senate to make sure that a stable and qualified workforce is there for you and your family. >> the availability of home health aides as everyone here knows is a nationwide shortage. i do believe it helps to alleviate the burden by helping family members to fill the gap when they are unable to be found. with the home health aide in the states between 13 and $14 per hour. when you consider what that requires for someone to come to my home, the nearest metropolitan area to cardwell to butte montana that has roughly 35,000 people, so that is probably where it would come from they would have to commute

40 miles over the continental divide to come to my home to provide health aide to services. willing to do that for 1350 an hour is slim to none. i do believe they will alleviate the needs by allowing people that are already in the recipients home or immediate communities to fill those needs. >> thanks very much. i will turn next to senator scott. >> thank you chair. how does your facility assist the caregivers when the veteran oncened in the home but still needs additional support? >> the healthcare program is a phenomenal program that allows for the veterans to keep his or her own position whether they be with the va or in the department community. we think we provide a tremendous serviceerans six days a week and i would like to give you an example senator scott.

when the veteran is in our program it is a six-hour visit and they arrive at 9 a.m. and depart around 3 a.m. during the course of the time they can get a lot done for the veteran. think about someone that is caring for their elderly parent or grandparent who is s a veteran and while they are at the home they can receive phlebotomy because the doctor ordered a blood test and they can receive a simple x-ray or ultrasound. and even receive physical therapy, occupational therapy and speech therapy. maybe the hearingl aid needs a batteryba change. this is what we tend to do in the state veterans home program and on the model model program. keeping veterans out of the emergency room avoiding hospitalization and certainly delaying placement into the skilled nursing facilities. thank you.

>> thanks for what you do.at is the biggest challenge in assessing benefits for the va? >> caregiver benefits that are actually caregiver benefits follow the healthcare side and some of the biggest problems with those have to do with the evaluation itself. i would tell you that it doesn't have many problems. the regulation itself has many problems implementing regulation. and one of those problems is the language that the va created around each and every time with assistance. it prevents a veteran from having or showing any independence at all should they be able to toilet by themselves once in thee entire six months that prevents them from being

eligible for each assistance because it doesn't meet the standard of each andrd every time. one of the requests had been they be changed however each and every time is in the regulation, not the law but it was upheld by the courts because we have seen them change this regulation multiple times. we've actually asked that congress codified and that it be regular instruction instead of how it is broadly worded in the law now. for the supervision protection and instruction, that is centered with daily care. a lawsuit the veteran warrior lawsuit actually overturned that and created that regular which was the standard in the law.

we wouldou ask that once again be codified within the statute so that the va cannot make the change again regulatory regularly. there is also a standard that to be in a higher standard they would be unable to self sustain in the community. we ask that congress make a little bit of change even though it is regulatory language because currently the employees don't interpret that correctly we've asked it to be evaluated multiple times and what we keep finding is that it continues. [inaudible] able to perform those duties or needs assistancee because let's

say you are a veteran that needs 24 hour a day care, it is impossible to provide 168 hours of care per week. so the best thing to do would be to have home health aide, a combination of such for those hours. what we have found is that they govern the amount of hours that you have and then for the hours that govern how those progress and interact together. it is a confusing maze as to what is available and to top that off those hours differ

between different visions or the medical communities within the va. if someone wassomeone was asking about caregiver wages. there is a mechanism within the va for your local va to request an increase in home healthcare workers reimbursement rates. most do not know how to engage that mechanism but one way that you could eliminate or lower the shortage of home healthcare workers is to increase that reimbursement rate so more people would be willing to take those jobs. and if you look at the current reimbursement rate in the state ofla alabama the current reimbursement rates are $30 --

>> you are out of time i'm sorry. senator scott thank you. we will turn next to senator murray. >> thank you very much. it to the chairman and ranking members for holding this really important hearing today a appreciate the testimony from everyone. i want to particularly thank you. t yours truly was my family's story. my dad was a world war ii veterann diagnosed when i was a young teenager. seven kids in our family, and our family went through what your family is so i want to thank you for your service and sacrifice to the country and lisa for what she i notice every single day for your family as well. and that is why i worked so hard to get the family caregivers act passed personally because i know mwhat to so many people struggle with and it is a real challenge. as the chairman of the senate

veterans committee at the time, i worked hard to implement it so it is in line with our congressional intent. what all of you said to us is you answered senator casey a little bit what do we need to focus on? >> particularly with regards to eligibility for the comprehensive program once again i would go back to my previous statement that the current eligibility requiring assistance with a performance of activity of daily living each time.

so again, thank you for being here and sharing your story and what your family has done. i want to turn to thank you for what you do for your community and i want to ask you something that doesn't get talked about a tlot and that is the high level of stress and depression from caregivers who i know it is especially true for post-9/11 caregivers, 42% of the criteria that is twice the amount that is a heartbreaking statistic and i think it's something that we need to focus on.

can you talk about what the services are for the caregivers that need mental health treatment and what we need to do to address that? >> yes, i agree that is a startling statistic and i think that is the reported statistic. in my experience being in the caregiver community i think the rate is actually higher than that. one of the things that is so important is the support it does provide to caregivers. butthere are community functions where they host abilities for caregivers to actually interact with each other to caregivers and that allows caregivers to feel less isolated. being a caregiver at a young age i think is something that most people don't expect. that greatly is in contrast to people carrying for someone who

is geriatric and we certainly expect people of a certain age to have mobility needs or supervision protection and instruction needs. however, to care for someone that is in their 20s who has those same needs it is difficult when you're in your 20s or self. so that certainly is kind of something to support p caregivers in learning how to become a caregiver and provide educational resources. there's also outside foundations like quality of life and the elizabeth dole foundation but also c provides caregiver communities and resources and educational. but ultimately, be your

resource for getting mental health therapy as a caregiver and if you are in the program of general care and you don't have 100% you do not have access to that or perhaps the insurance that would allow you to see those mental health therapists. >> my time is up but i want to also mention something that i personally know well 2.3 million children live in a household with a disabled veteran. they provide unique challenges and responsibilities and to help establish new programs for kids who live with a disabled veteran and give them the support they need and i hope we all look at that as well so thank you all very much.he >> thank you for the first time

i know of we've had a joint immeeting and i would say our witnesses into their testimonies are among the most compelling of the many areas that i've had with veteran issues and aging issues, so thank you. the most recent requested 141 million from construction programs and the current list projects totals 1.2 billion. it barely scratches the surface and we are waiting for new construction projects in northeast kansas and i just would highlight for the administration and for my colleagueshi this only delays the care for veterans but puts the stateet who is putting money into this project in a difficult tusituation planning and

financing. i'm sure many of my colleagues will work to find resources beyond the request for increases in funding of the state home grant program. so thank you for highlighting that. let me ask a couple of questions. i appreciate you working closely with me and a senator sinema on the reeducation reemployment and retirement act tell me why you think at a why my colleagues think it's important for us to consider this legislation and what impact it would have on caregivers communities? >> thank you senator. we appreciate your involvement in creating the act of something something that has been a long time coming. first,t, caregivers are in situations where if a veteran

was injured or medically retired, a total va pay is the securitypassed thesecurity disability as well as the caregiver stipend. all of that income is unearned. it would allow him to study whether or not caregivers would be allowed and whether there would be a mechanism that could be created to take place. it would also allow caregivers

to leave either because their past or they would be able to caregiver or their veterans recovered and of the veteran had to go toto a state home it would give them a thousand dollars per caregiver to renew their employment certification they lost due to caregiving and it would also offer them return chips that already exist for olders americans within the department of labor. if you've watched the movie with robertrt de niro and anne hathaway that is a return where he returns into the workplace that would be the return ship program. the bill creates the way to secure the caregivers in their later ages because as of right now there is no mechanism for there to be f financially secure.

they are looking into being financially destitute in their later years. >> the more effective advocates and when i say those things and i appreciate you putting this into the record for all of us to hear. please give my remarks to senator dole. dole in his efforts to recognize world war ii veterans on the national mall and a senator elizabeth senator elizabeth dole in her efforts to make sure the veterans are cared for correctly and appropriately.

somebody is bringing me a problem from a veteran prospective andperspective and the reaction is this can't be true what is going on here. one is the dismissal of the legacy participants for the caregiver program. it's on pause andus we are all pleased about that. but would you highlight the position of being in no man's land. >> thank you for that question and i decided a long time ago that the first time i stopped saying s why is this happening is the first time i shouldn't be doing this anymore. the story probably explains it best. others currently 14,000

ayindividuals. sometimes death, sometimes improvement and divorce. the number is not extraordinarily high and going down.a the idea of offering grandfathering to the population of people would be to recognize that they have undergone so many different regulation changes. as pointed out the program shifted from seriously injured to severely injured and there's a significant concern that they have been found eligible time and time again would then be removed from the program when the new regulations are issued. if this is something the congress repeatedly said is not intended.

i understand the challenge here where the problem from my perspective has been there were regulations published almost four years ago that went into effect october 1ef of 2020. you've been taking care of your husband nearly 20 years. can you tell me what it was like before the regulations went into effect? >> before the regulations went into effect, i felt and it certainly felt like there was a mechanism in the va and there's additional case management or support i knew who

to call and who to ask. once those regulations pass and we were dismissed from thegram as the senator expressed we felt like we were in a purgatory situation here where wey just don't know what the d next iteration of the regulations will look like. >> for further explanation a regulation was put into effect october 1 of 2020. nothing changed. his needs remained the same and potentially even got greater because they are getting older. >> correct. >> and yet you were removed from the program because of a reassessment? >> that is correct. >> and it was required by the new regulation? >> yes, that is correct. were you able to appeal that

assessment? we received a letter that basically stated that it was unnecessary because currently everything was on pause. the entire program was seen put on pause. >> it wasn't pretty pre- regulation it was post regulation. >> tell me what that impact had in losing that certainty that the caregiver program gave before october 1 of 2020. what impact didd that have on your family, on you your husband and your children? >> basically it creates a large sense of uncertainty. what doesf the future look like because of this resource for all the caregiverse including myself it's going away.

what replaces it? i don't know. i don't have those answers so it becomes increasingly difficult to fathom how to meet the needs in the future. so, that would mean i would lose the caregiver stipendhich means a significant portion of the income is simply going away. >> the regulations are there. i want to go over to you. appreciate the comment that we've got some good bills that get things done and get hung up because of politics in the day.

i want you to take a moment to summarize. i want you to particularly highlighted why this bill is so important for the nations caregivers. just to be clear -- the home care act as i mentioned has most important for the severely injured and most ill is the provision on the removal of the cap and that is i have caregivers watching right now who are leading every single day to ensure that they are able to get the services they need to keep the veterans they care for in their home.

those are going to be the individuals that have the a long term severe, traumatic brain injuries and without the removal of the cap to which everyone seemsms to agree they will potentially have to move to a nursing home because it prevents them from getting the care and services inside their home. for one reason or another because you are allowed to pay under that program that is significantly helpful for those who care for it for an individual that have cognitive disabilities or mental health disabilities that at the moment may or mayes not qualify and give them the flexibility and control of who they are hiring in their home because often times they don't want to somebody that is

unfamiliar in their home as you are able to hire a friend or family to do that. at the other provisions include he va that provide the care services home health aides home-based primary care mandated to stay within the va because while those are a little bit more available than the veteran directed, there is a concern if it isn't legislated it can be taken away. >> i appreciate all of the testimony. >> there's 16.2 million veterans including 111,000 into these brave women and men have made great sacrifices when they put on the uniform and i'mri committed to making sure they've got quality benefits and care they've earned.

that's why i introduced the tax cuts for veterans act that would make military retirement pay tax-free just like we did. across the country there's more than 6.5 million veterans and military caregivers who provided $14 billion. a family and others that provide to spend on average $11,500 of their personal income and out-of-pocket expenses and related to the caregiving of the veteranss. this provides access to the va health benefits, financial aid mental health services after 30 days but 34% of veterans have used the benefits

of the va healthcare. ms. sawyer over 33% of nebraska and veterans live in rural areas that can create unique challenges with veterans and caregivers. to the va caregivers programs offered any resources that specifically help veterans and caregivers and if so they provide to support that addresses the challenges the veterans face? >> in rural areas as with caregivers you are in urban areas and they can't get out of the home. there are mental health programs that are virtual programs that have been put in place. if you are a member of the comprehensive assista you now have

access to therapy virtually through that program. you also have options for respite care in home or the home or in facility if they can find a home health aide caregiver that being the concern. what i was stating earlier in the areas where it is difficult to find home healthcare workers there are mechanisms in pla where they can raise that reimbursement which would make it more attractive and possibly make healthcare workers more widely available in rural areas because trying to get someone across the continental divide for $13 an hour is rather daunting but in south dakota they managed to raise the reimbursement rate to $85.5 per

hour where in alabama it's $30.50 per hour. so if they are able to raise the reimbursement rate, you would have better access to those home healthcare workers. also it is difficult sometimes for caregivers and veterans to travel to the va facilities and certainly community care makes sense. at thethe concern is for the comprehensive assistance that they need to be able to get into the va medical records which is what we see is keeping people from being accepted into the program. it's's not that there is a lack of need. there's a lack of evidence of a need for assistance and that's partly because those outside records never get into the va.

it is never asked about during your yearly exams. it never evaluates for the supervision and protection needs. those are usually done by specialists. most of thing you see the specialists in the community rather than the 200 miles or 400 miles in the case of hannah and her husband in montana so you have to have that mechanism to get those records in. we issue a questionnaire to document those needs and then have that submitted to the va by the veteran and caregiver. one of thosee documentation into the va. >> is that rely on the veteran from asking that or is there another way to make sure the

information. if a veteran and caregiver identifies that there are outside medical records that need to be obtained for the evaluation process it is the va responsibility to get those records so that we can maybe consider that process. so while doctor richardson has trained her staff to do that that doesn't necessarily exist.

>> we will turn next to senator kane. >> there's an unspoken theme to the hearing and that is implementation is as important as vision. we deal in the law up here but the majority of what you've been talking about today has been implementation of the law. one of the best examples three ayand a half years ago we passed a law about the state veteransnd homes and we are still waiting for the regulations. something like $3 million a year based upon the lack of having this.

i mentioned this before in the committee. i like to remind people when things were going to take that eisenhower retook europe in 11 months. we shouldn't be waiting years for regulations to implement the laws that we pass here. i hope that can be a theme of the committee not that the va that they are bad people or they are trying not to enforce the laww but somehow we have to break through the delays and the sort of s sometimes nonsensical such as what you endured because one of the other themes is home care is preferred and cheaper. we should be encouraged. i presume you would rather be at home than inme a hospital or nursing home. >> that is absolutely correct.

any you would have been adequate reimbursement rate. isn't that correct? >> that is also correct. >> to use the term penny wise and pound foolish. i guess it must be in english term in our case penny wise and dollar foolish but this is the case that we are nickel and diningli what is a much lower cost alternative. this is the big picture as i see it. >> these are human beings first of all and asf you say in most cases from the perspective of cost savings the idea as has been pointed out previously the

program has higher standards to become a part of. >> another m example about the staffing ratios indicates by next year we a 78,000 shortage in thiset country yet thereul are rules for increasing staffing when there's nobody t to hire and i know in maine we have lost we are losing for nursing homes so far this year, one this week. we've lost 26 in the last ten years because of the lack of staff so these well-meaning regulations, nobody is against the adequate staffing levels but the well-meaning regulations end up with less care if we lose

nursing home beds. do you agree? >> i think it is a big problem and something we should be looking at nationwide. for the skilled nursing facilities we will be locking 1,200 registered nurses into certified nursing assistants to meet that because cms passes a regulation doesn't mean that they are going to magically spring into existence. >> that is correct. records show that you said well stated mr. king. i just want t very serious problem and we are losing caregivers and what compounds it is the caregivers who are staying are being burned out because they are having to work so many hours so we should really be talking about how do we surge people into this industry not requiring staffing levels that are going to end up with not lesser care but no care for veterans and elderly people throughout the >> one quick example in the

pandemic 36 d caregivers in a single day on september 28 and that was due to the vaccine mandate. we have to think quick on our feet so we came up with a new provider and title. these are people that are not certified nursing assistants but can do many of the tasks of the cna's with an exception of toileting and bathing. it worked out well for us. they made ake little bit more and we found people to fill this particularnd role. the sad part for us as an institution as we got no credit whatsoever in terms of the payroll and we had an ultimate type of caregiver to provide the care to be hands-on for things like feeding the residents helping them get dressed and make their beds and helping transfer them around the facility so we were able to provide the care but sadly they

didn't recognize this kind of caregiver and when it came to the metrics of providing a certain amount of providers for residents they were not counted. i think we should move cms out of washington into poughkeepsie or bozeman montana so they know what's going on on the ground. >> thank you. we will turn out to the senator. >> thank you very much mr. chair mr. chair. thank you for the work you do and your advocacy. not only for the country's veterans but the people who take care of the country's veterans. it's really important and critical work obviously. i just wanted to start with a question for you and thank you for your service in the army and as the physicians assistant and

advocacy. the authorization act that president biden signed into law included a provision that will expand access to universal changing stations in the airport. the changing stations will provide individuals who experience disabilities and their caregivers with a safer and more dignified travel experience. i want to extend a special thank you to the paralyzed veterans of america and disabled for their provision they help to get across the finish line. but can you speak to the importance of making travel more accessible to individuals experiencing disabilities and how it helps them participate more fully? >> with regards to travel, the primary obstacle that i faced since i've become a full-time wheelchair user in the community is distance. since becoming a wheelchair user i am reluctant to consider flyingng therefore i only travel by ground.d. i've heard the horror stories from others about what happened

to their wheelchairs during travel and id can't imagine the frustration of getting to your destination only to have essentially your legs taken away from you. >> i appreciate that and that is another issue we are working on to address. i think a lot of people are unaware of the lack of access to universal changing rooms could be a barrier to people with disabilities and their caregivers. i want too thank you for a lot of the work at the elizabeth dole foundation and thank you for the home care act that i am a cosponsor of andlt proud to work with you on. in your testimony you touched on the financial strength experienced especially families and veterans who are not associated with the va or have difficulty accessingng the va programs. the credit act that has bipartisan support would help relieve some of these by providing tax cuts to family caregivers who also hold down

another job that is a pretty frequent situation. can you discuss some of the strains caregivers might face reand how the costs impact them and at the the people they care for? >> there b would be two populations involved in that question and it would be the veterans associated at the va and those who are not so for veteranser associated, there is any number of programs and services that can potentially reimburse or pay for the needed supplies however one as we discussed earlier accessing information about that, knowing that and having the time to be able to do that is incredibly difficult so veterans into caregivers often pee out of pockets even if they are associated sometimes especially housing modification or something as small as tylenol advil, gauze. so they would then be

responsible for that out-of-pocket expenses and we are very much strong of that credit for carrying act because of the out-of-pocket expenses. >> i also want to note there are caregivers that work p jobsre as opposed to full-line so they are earning less as they are also trying to take on this additional work and additional expenses. last question, it is important that we support people with disabilities and their homes and for being as independent as they can be and we've talked we talked a lot today about the workforce shortage for individuals with disabilities including direct support professionals that can assist with daily tasks and provide job support and respite to family caregivers. we've been working to ensure we have the information for the professional support they do

most recently to adopt a job category for the support professionals to track how many of them we have. i want my colleagues to know how important these people are. we have been blessed with a's professional within 35 of 30 to 36 years and has just been extraordinary. these are people that are hard-working and make a difference to provide respite care and help people to be independent. what else can congress do to strengthenre the services for people with disabilities in the workforce? >> until you have data that shows where you are as necessary increasing it as mentioned a lot of the people will do this out of the goodness of their hearts

but most need to be able to pay as necessary. while the foundation is supporting family caregivers they also rely on the direct support professionals to provide the services you mentioned into so this is incredibly important to us as we try to make sure everyone has the services they need to stay in their homes. >> thank you for your indulgence. >> next senator f kelly. >> thank you to all the witnesses for being here today. my first question is for ms. sawyer. oneti of the most sacred promises the country makes is to care for the servicemembers when they return home and i'm committed to making sure the country keeps

these promises and that includes family car support they need to care for their loved ones. i've heardr from arizona that are in families that they were remod from the program of comprehensive assistance for family caregivers during the expansion rollout and they previously qualified in some cases for years for this program program. for the discharges of the legacy participants i'm'm troubled that some of the folks that areav disqualified to still do not have an expedited appeals process. this is anacting the veterans and alsor their families and life continued to urge the va to fix this. so can you please share your experience with the changes to

this program of comprehensive assistance for family caregivers? >> thank you senator. in the beginning the only appeals that were available were clinical appeals and they were governed under the regular clinical appeals. when the new regulations were written for the mission act in 2020 the clinical appeals shifted to the centralized eligibility that was created. with the court decision it opened up multiple avenues for appeal so it was forced to create supplemental claims which occur and there was an avenue opened up for the appeals

claims. also because decisions had been governed under regular clinical appeals, the clinical appeals and the va did not require justification. theyui simply can be lifted as approved or denied and so they did undertake an effort to do -- >> can you describe what the decision was? >> it was a court decision that basicallyy said a veteran and his spouse need to say you said we were not eligible for program, but we don't really know why because the letter you sentsn us doesn't tell us why and we don't have the rights to appeal that we would in other

situations so the decision created the extra avenues for appeal and the need for the eight-pointth letters so it is a letter that a veteran gets that is basically it mirrors a process within the veteran benefits administration that explains exactly why a veteran is denied to so so with of this setting up of the supplemental claimsms and higher-level reviews this is something unique that they had never done before. they had a complete process they had never been involved in and then they had to write regulations and directives and everyt va does.

they were not able to act on them so they were accepting between 1212 to 18 months before they could act on them. they are acting on them now for the supplemental claims and higher-level reviews so we are starting to see some decisions come out of their. one of the things in the quality of life foundation to say if you have supplemental information that should have been available att the time of the original denial while we would urge you to go ahead and submit a supplemental claim, we also want you to if you've been denied from the beginning want you to go ahead and submit a new application using all that evidence. we can go ahead and get you in the program with of that extra information while at the same time the supplemental claim runs

which then if you were accepted in the new application you would be from the approval of the new application back to the date of the original application however there is a little bit of a narrow window that if that information that we considerns supplemental should have been availae at the first review you can file it as a clinical appeal and have your appeal acted on within 30 days that would get you back and paid to the original application and recently we just had that happen with a veteran. he was in arizona veteran and we got him back paid all the way to his denial in 2021 because they never contacted his specialist. >> do you feel this is moving in

the right direction? >> i feel that is moving in the right direction slowly. >> thank you so very much, chair casey for holding this important hearing today. first lady of georgia used to say there's only four kinds of people in the world. she said that there are those that have been caregivers, those who are currently w caregivers and those whoeg will be caregivers and those who need caregivers. yet the caregiving infrastructure is falling short. the generous caregiving programs for the work that happens there for the two of the witnesses today confront challenges with one federal program intended to

support caregivers of injured veterans the program of comprehensive assistance for family caregivers for the pc afc. i'm deeply sorry to hear about your husband's experiences with the reassessment process. you are the human face of the public policy issuess that we are trying to address and it's important that we send it to the families. tell me how can the va and prove the reassessment process so veterans won't have to experience the turmoil you and kelly faced? >> the regulatory changes that were implemented which required assistance each and every time and supervision protection and

instruction at r a rate of continuous daily care were exclusionary and therefore needs such as my husband has for seizure care and things like that. while those are very serious and require constant care, regular care they are episodic and therefore because of that, the nature of the disability itself, they were unable to meet the standard with continuous daily care and so that language is problematic and should be changed. >> thank you so much. again you are the human face of the public policy regulations and match where people actually live so we have to be very intentional about

getting g it right. thank you for your service after being here today as a witness you and your wife receiving caregiving support can you talk about your experience getting connected to assistance after the va denied your application? >> after we were denied access to the comprehensive program we were still able to access most of the benefits. lisa hasas still been enrolled in the assistance and we are able to participate in benefits such as respite care. we really haven't had, put it this way the main benefit of the comprehensive program is the benefit of at least for me the availability of the medical insurance coverage.

the other benefit is the financial support through the stipend we can live without but what made it possible for my wife to retire early and become my full-time caregiver was that availability. and in our case since we were denied access in the comprehensive program fortunately for us because of the 100% permanent and total nature of the disability rating we were able to access the benefits through other means not through the caregiver program itself. >> so you were not automatically connected. >> it's interesting as we went through the process in our meetings for exaworker at the hospital if we were denied access we still would be able to access the benefits throughgh the general program. we assume the transition from the comprehensive program to the general program would be almost automatic if we were denied

access but come to find out that is not the case. it was only later whe i contacted the staff at the va that we realized lisa wasn't enrolled in the basic or general caregiver program. it wasn't an automaticic transmission so whatever the committees can do to work to ensure a more seamless transition between the comprehensive program and general caregiver program if you are denied access would be a tremendous benefit. >> painting the picture of a fractured system where the parts do not talk seamlessly to one another so clearly there's room for improvement in addressing care to make sure veterans don't fall between the tracks. but thank you for your testimony it brings this kind of issue

into focus and helps us see the work we've got to do. it's an important topic. thank you for doing that. i noted that you said in your testimony and pe already asked so i apologize for not hearing what their answers were but you spoke about your ineligibility for the comprehensive assistance for familypr caregivers because you're 100% service related disability didn't require assistance each time the activity is performed. now i remember that ms waxes and

wanes, so there's other conditions. tell me how that played is that distilling an issue and what is the way to approach regarding this? >> thank you for that question. you are absolutely correct the conditions like mine is often that tend to wax and wane and can be severe on certain occasions. that's been my experience with of the condition and i'm confident there are many other out there in similar circumstances. t as we talked about earlier the current requirement that required assistance with certain activities each time or every time it is performed is restrictive and excluded not only myself but i'm sure many other veterans like me from participation in this valuable program. is there a solution to propose?

i see you nodding your head. >> yes sir one of the solutions that you remove each and every time from the language of the regulation that one of the requests has been the congress actually codify that it needs to be regular assistance because it was regular assistance until the va reinterpreted the regulation. so that's why we would like to ask congress to codify that language. >> why did they reinterpret? >> they made a move in 20 lynx to what they said was to realign the program with other va extended care programs. unfortunately what the program even harder to gett into the other programs. there were actually there was a

rampant rumor and anecdote that there is athere's a lot of fraud within the program. there's not been proven to be a lot of fraud in the program. has there been some, sure just like you see in every program but it's not rampant like it was, like it has been. the one way that i would be curious to talk about you can get around of the each and every time standardve is that if a veteran then needs supervision and the activities of daily living they can be considered undered supervision protection and instruction. t but in the beginning b a lot were not trained to look at it that way under this new regulation so i would be curious to know if he ever appealed and had it looked

at through the lens. >> i had coffee with the woman who is now my age but i remember when she was lynx. a lot of it happens in the interim. she has a son who's been mentally ill and he's now 40 diagnosed when he was 27. she said at some points she felt like giving up. if your had to put your finger on the gap in mental services for the caregivers, where would your finger land? >> thank you for the question and yes it is a significant

problem that we have seen quite a bit of and i think that one of the major things we recommend just to start impacting that problem is it's been great they were able to offer mental health services for those that are eligible in the program but that's a small minority of the population. wewe recommend that it be expanded to those in the general program as well to at least take a larger bite of the apple apple addressing that. ink think also we can try to remove some of the burden that is filled by the caregivers by addressing the care coordination issues that are rampant. in almost every case i've run into the lack of care coordination has been the root of the problem for the veteran and the caregiver and at the of the amount of time navigating the

services and frustration to repeat and prove is weighing very heavily on the caregivers andve veterans. >> so to reestablish my son has been disabled for 20 plus years. i get that you recover from some things but there are some things you don't recover from so it does seem like we could make some distinctions. >> i've got to apologize i went over l longer. but thank you all very much. >> senator cassidy thank you for the questions. i have one more before we wrap up and i appreciate the testimony of all of the witnesses. i want to go back to you you are a retired physician assistant

and someone who is deeply who's deeply engaged with other veterans in your community through the paralyzed veterans of america volunteering at the medical center but even with your extensive knowledge of the healthcare system and veteran connections you had to self educate on the benefits available to you. many organizations said they received no direct outreach about the caregiver support program. often veterans seem to have heard of the program from the veterans service organization. i am concerned that this haphazard approach and that might be an understatement, the haphazard approach will leave too many families that are eligible in the dark about the support program. veterans and their caregivers deserve to know when there's a program that can provide them

with the support so i have to ask how did you find out about the caregiver support program and number two is how do you think veterans who are not healthcare experts are connected to other veterans as you are can find out about these programs and how to navigate them? >> the haphazard approach that you described certainly has been my personal experience. most of what i learned through the process of self-education by talking to fellow veterans like working with organizations and online resources produced by the va. but it's interesting. one of the things that seemed common sense to me because it can be intimidating even somebody like healthcare experience but one of the things

i thought of that would occur would be particularly whenhe you're new in the system you would have an opportunity to sit down with a social worker in the va and they explain the benefits that you're eligible for that certainly wasn't my experience because it often doesn't occur at least not in the way that it should. >> that's a reasonable proposal. >> i want to close with a statement and we will wrap up. all of you have been patient with your time and experience. we appreciate you being here with us.to as we heard from our witnesses the caregiver support program is a vital and life-changing benefits for so many but too

many veterans are not able to get the benefits that they have earned and they and their families deserve. at the service members and veterans but their lives on the line every day to ensure america remains the land of the free. we rely on their commitment and when they are wounded or injured orey ill, they need our support and commitment. it is imperative if we do everything we can to support the critical workers with family and other paid caregiving. there's one near my hometown of scranton shared in a statement for the record for today's hearing ifif our son who lost his eyes and one third of his brain and service to the country if he is disqualified and we are left

wondering who truly qualifies for f these services we must do more to provide support to veterans and caregivers so they can do their work and are supported fully inn the process. we need to provide easier access to information about the caregiving and long-term care services and support that the va offers as well as easier navigation into and supporting the application process. as we heard veterans shouldn't have to rely uponto the word-of-mouth to find out about these life-changing benefits. we also need to make sure that have the resources that it needs including a strong stable workforce to provide veterans with the best and most efficient care including caregiver support services. i look forward to the needs of

our millions of veterans and family members in need of long-termi care. i know we will have a number of statements for the record and i should say closing statements and we will enter those into the record at the appropriate time. i want to once again thank the witnesses for contributing their time and expertise today. i will be entering and i'm just holding up a folder with a containing five written statements for the record. these are from pennsylvania veterans that to receive long-term care services and support from the va or who are enrolled in the family caregiver caregiving program. if any senators have additional questions for the record of her witnesses were statements to be added, the hearing record will

be kept open for seven days until next wednesday june 12th. thank you all for participating today and this concludes the hearing.

[inaudible conversations]

we were other soldiers said get your family out of the house. we stood on the driveway waiting for our mother to come out and

pointed at our father. when she came out she had sister, a huge duffel bag and tears were streaming down her cheeks. that memory is seared into my brain. from

both sides. this is over