Elizabeth Guerrero 00:00:00
Let's begin. Welcome. Hello and welcome to the Parkinson's Foundation webinar on resources for veterans living with Parkinson's. I'm Elizabeth Guerrero, your host for today's webinar. Helping me behind the scenes are my colleagues Danielle Agpalo and Laura Cameron. More than 110,000 veterans with Parkinson's disease receive care through the U.S. Department of Veterans Affairs. Many U.S. military veterans with Parkinson's have access to specialized medical care and financial assistance through the VA.
During this webinar, we will dive into an exploration of the extensive resources and dedicated support services that veterans have access to through the VA and the Parkinson's Foundation.
Today's webinar, and the entire Veterans webinar series, is presented with support from the Don and Lorraine Freeberg Foundation. We want to take this moment to thank the Freeberg Foundation for helping to make these programs possible.
The mission of the Foundation is to make lives better for people with Parkinson's. Whether you are living with Parkinson's disease, caring for someone with Parkinson's, or working to end the disease, we are here to support you.
To achieve our mission, we pursue three goals: improve care for everyone with Parkinson's, advance research toward a cure, and empower and educate our global Parkinson's community. Today's program is a great example of one of the things we are doing to help us meet these goals.
The Parkinson's Foundation hosts weekly education and wellness programs through PD Health at Home virtual programming. Join us for Mindfulness Mondays, Wellness Wednesdays and Fitness Fridays. Most of the PD Health at Home programs are recorded and posted on the Parkinson's Foundation YouTube channel. With your smart device, scan the QR code on the screen to connect to our YouTube channel, or find out more and register to attend our live PD Health at Home programs at Parkinson.org/PDHealth.
As part of the Foundation's commitment to reach every person living with Parkinson's disease, a critical way we do this is through our partnership. With more than 110,000 veterans living with Parkinson's disease, the Foundation is proud to have established a formal partnership with the Veterans Administration. This partnership has an overarching goal to improve the quality of life of veterans living with Parkinson's disease and their care partners through greater access to education, resources and support. I'd like to invite you to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran. That website is Parkinson.org/Veterans.
Elizabeth Guerrero 00:03:28
Before we dive into the formal part of the webinar, I'd like to outline today's agenda. We'll start with a presentation from the associate director of education, who will discuss the resources available to veterans with Parkinson's. Then we'll move on to a second presentation providing an overview of VA services for veterans, and we will conclude our webinar with a question-and-answer session.
We're excited to kick things off by welcoming Gretchen Glenn, Associate Director of Education at the Philadelphia Parkinson's Disease Research, Education and Clinical Center. As a dedicated social worker, Gretchen has spent her career supporting veterans and their families, helping them navigate the challenges of Parkinson's and other chronic illnesses. She leads education, counseling and outreach efforts, and also serves as chair of the National VA Parkinson's Disease Consortium Education Subcommittee, making sure veterans with Parkinson's receive the best possible care.
Gretchen's passion for helping others shines in everything she does, and we're grateful to have her with us today. Welcome, Gretchen.
Gretchen Glenn 00:04:45
Thank you, Elizabeth, for that introduction, and good afternoon, everyone. Thank you for having me present to you again today. I'm going to pull up my screen.
Today I'm going to go over the PADRECCs and the National VA PD Network, how to access and see if you're eligible for care at a PADRECC or one of our associated sites, give a little general overview of resources available through the VA and highlight the VHA Parkinson's Foundation partnership. It's a lot of information that we're going to go over today, so feel free to put questions in the Q&A and we will try our best to answer them.
PADRECC stands for Parkinson's Disease Research, Education and Clinical Centers. We were established in 2001 to take care of the then approximately, this says 110,000, at that time it was 80,000 veterans with PD. We know that number has grown, and we're working on getting even a more accurate number as we speak. The mission of the PADRECC is to provide state-of-the-art clinical care, research and education to an expansive geographic region. All PADRECCs are staffed by movement disorder specialists, researchers and allied health professionals.
The six VA PADRECCs are located in Philadelphia, Pennsylvania; Richmond, Virginia; Houston, Texas; West Los Angeles; San Francisco; and a split center in Portland and Seattle.
In 2003, we established the National VA PD Network to provide professional networking, mentorship and training to VA clinicians and allied health professionals across the VA healthcare system.
Then to further open up access to care to our veterans, in 2006 we launched the PADRECC Associated Sites to create a hub-and-spoke model of care, which at that time was highly innovative.
You can see by looking at this map that the PADRECCs are represented by the green dots and sort of create a necklace around the United States. Veterans who were living in the middle of the country, up north toward Maine or down south closer to Florida would have a difficult time traveling to a PADRECC to receive care. What we did was reach out to VAs to find movement disorder specialists within them to see if we could form a relationship with them to be able to provide opportunities for our veterans to go to them for care.
In turn, we provide them with mentorship and education, support and consultation. As you can see, the purple dots represent the PADRECC Associated Sites, with over 60 of them present today. It's much more accessible. The PADRECCs and the associated sites also all offer telehealth appointments as well.
The PADRECC mission is threefold, and I'm going to go into each one separately: clinical care, education and research.
Gretchen Glenn 00:08:06
Our clinical services are a multidisciplinary team approach that can include an attending neurologist, fellows, nurses, geriatric psychiatrists, neuropsychologists, social workers, pharmacists, PTs, physical therapists, occupational therapists and speech therapists.
We do diagnosis and treatment of movement disorders, DBS and focused ultrasound evaluations for Parkinson's disease and essential tremor, and several PADRECCs and associated sites also do the surgeries at the VA hospital. If we can't do them at our own hospital, we have a relationship where we can have it done at one of the university movement disorder centers close by.
We do neurostimulation for DBS, which is adjustment of the DBS device. We do Botox injections for dystonia, hemifacial spasms, spasticity and other indications requiring Botox.
We do neuropsychiatric assessments to look at the cognitive aspects of Parkinson's disease and if there's any impairment going on. We provide a lot of disease education and outreach.
We do psychosocial assessments to see how the veterans and their families are doing, making sure that they're receiving access to all the benefits they may be eligible for, and really linking them to the care that they need.
We have palliative care discussions, and many of us have connections with our VA's palliative care team to discuss things like goals-of-care conversations, difficult treatment decisions and end-of-life care planning.
We can do referrals, as I mentioned, to physical therapy, occupational therapy and speech therapy.
I just wanted to highlight these two virtual programs that we offer to address the mental health symptoms that can arise in Parkinson's disease. We collaborate with Dr. Rosanne Dobkin and her team to offer cognitive behavioral therapy specifically for veterans with Parkinson's disease, as well as a psychiatric consultation service offered by Dr. Daniel Weintraub out of the Philadelphia PADRECC and Dr. Joel Mack out of the Portland PADRECC. This is where a doctor within the VA network can consult with either Dr. Weintraub or Dr. Mack if they are treating a veteran with Parkinson's who might need some mental health issues or psychiatric issues addressed.
Both Dr. Weintraub and Dr. Mack are able to consult and provide recommendations for treatment.
Our next mission is that of education, and that's twofold. We do patient education programs, so all PADRECCs and many associated sites offer monthly virtual support and education groups. They're open to anybody, either within or outside the VA. We do annual education symposiums, develop and distribute print and media resources, and we do a lot of community outreach to make sure that veterans are aware of what services are available to them.
We also do a lot of professional education programs. Many PADRECCs have a movement disorder fellowship program, which is a two-year training program for neurologists who want to specialize in movement disorders. We offer two movement disorder webinar series a year, and these are usually three- to four-hour training webinars to train VA clinicians across the VA network in different topics related to Parkinson's disease. For example, we have one coming up in September focusing strictly on young onset.
We have our monthly case conferences and journal clubs, where we provide case consultation on some difficult cases clinicians may be facing. These are all available to view. For further information, you can view them on our website.
This is just a picture of our flyer for our support groups that shows some of our support and education group offerings. Like I said, if you're interested in joining any of them, you can reach out to the contact person listed, and they would be happy to talk to you more about their group and see if it's a good fit for you.
Gretchen Glenn 00:12:38
Our Richmond PADRECC hosts two separate support groups: a caregiver support group strictly for veteran care partners and a support group for young early-onset Parkinson's disease.
Our third mission is research, and the PADRECCs really do have a robust research program. This is not an exhaustive list; I just wanted to give you some highlights. We do research into surgical interventions. The VA and the NIH completed the first large-scale trial of DBS, known as Cooperative Study Number 468, and it was conducted at all of the seven PADRECCs.
We do research into drug therapies. Currently, we are doing a multi-center study comparing the antipsychotic pimavanserin, or Nuplazid, and quetiapine, otherwise known as Seroquel. We do a lot of research into gait and falling issues, looking at depression and other psychiatric problems, and looking at the non-motor fluctuations, such as anxiety, urinary incontinence, sense of smell, sleep issues, etc.
We do research into exercise and the benefits of exercise, and basic science or lab studies looking at the cause, treatment and, hopefully, cure of Parkinson's.
We do research into drug-induced parkinsonism, which is long-term exposure to antipsychotics, such as lithium and Haldol.
We do gene mapping and genetic predictors, research into biomarkers to help diagnose Parkinson's earlier and with greater precision and track progress.
Finally, we look at toxin exposure: environmental, chemical and toxin pollutants, such as Agent Orange and paraquat, that were heavily used in the military.
Now that I told you about the PADRECCs and the care that we could provide, how do you access healthcare through Veterans Affairs?
You're eligible for VA healthcare if you served active military, naval or air service, discharged under any condition other than dishonorable, and if you served in the Reserves or the National Guard, it depends on your active-duty service. Some eligibility factors are service history, VA disability rating, income and other factors. If you are service connected, if you are a service-connected veteran, you are eligible for VA healthcare, but you still need to apply for it. The PACT Act has also expanded eligibility for veterans, so it's definitely worth applying to see if you are eligible. I always recommend that to veterans.
If you served in the military, apply. Let them determine if you're eligible for care.
How do you go about applying? Some documents you need are your Social Security number and your military discharge paper, or your DD214.
You also need insurance information, if you have insurance such as Medicare or private health insurance. For income information, it's helpful to have your most recent tax return for income assessment purposes.
You can apply online, by phone, in person or by mail. I always recommend that the best way to do it is to download the application, gather up as much information as you can, and bring it to your closest VA hospital and meet with a person through registration or eligibility to help you complete the application. This way, you know that it was handed to somebody directly versus maybe getting lost in the mail or online.
Once you know that you're eligible and enrolled in VA healthcare, you can choose to be seen by a PADRECC or one of our associated sites. The first step would be to choose a PADRECC or Parkinson's Associated Site to receive care, and you can do that by going to our Getting Care page on our website, which is Parkinsons.va.gov. You can find the PADRECC or associated site closest to you and ask your VA primary care provider or VA neurologist to make a referral to that center.
If you need any help with this process, we have our National PADRECC Network hotline at 1-800-949-1001, extension 205769, and we'll be happy to assist you.
Gretchen Glenn 00:17:18
Before we move on, I want to go over some important VA lingo, and that is: what do service connected and non-service connected mean? These terms are important as we move forward in talking about VA resources available, and are terms you will see and hear often within the VA system.
Service connected refers to a disability or illness that occurred, was caused by or was worsened by your military service.
Parkinson's disease is a presumptive condition for some veterans, which means that it's presumed that the disability is caused by military service if you served during specific war times and/or were exposed to certain toxins.
Veterans who are service connected will receive disability compensation, which is a tax-free monetary benefit, and the amount is based on the determined level of disability. It can also open you up for more eligibility for different types of services through the VA, which I'll mention as we go further into the presentation.
Non-service connected refers to veterans who have a disability or health issue not related to their military service. Veterans diagnosed with PD who do not meet the criteria for a presumptive service connection may be eligible for some VA benefits under non-service connected status, and typically there is an income limit to be eligible.
Veterans who are non-service connected may be eligible for a VA pension, which is a tax-free monetary benefit payable to low-income wartime veterans. Veterans who might need some extra support, are housebound or need the regular aid and attendance of another person may be eligible to receive additional monetary benefits. It's just important to note that you can apply for VA service connection without enrolling in VA healthcare, but I strongly recommend you do so in order to receive all the benefits you might be entitled to.
Military exposure and Parkinson's disease risk: when the PADRECCs were first established, Parkinson's disease was not considered a service-connected condition. But in 2010, it became a presumptive condition for those who served in the Vietnam era and were exposed to Agent Orange. In May of 2021, parkinsonism was added to the list of presumptive service-connected conditions with Agent Orange. The exposure locations continue to expand, and most recently through the PACT Act, five new locations were added.
In 2017, VA announced Parkinson's disease as a presumptive service-connected condition for veterans who were stationed at Camp Lejeune during a specific period of time, and this is related to the water contamination. It's important to note that parkinsonism was not added to the presumptive list yet.
In 2013, Parkinson's disease and parkinsonism were recognized as secondary conditions to service-connected moderate or severe traumatic brain injury.
While the PACT Act did not add Parkinson's to the list of presumptive conditions for Gulf War and post-9/11 veterans yet, and this would be related to the burn pits and toxin exposures, it did expand the Agent Orange presumptive locations by adding these five locations below. I always recommend to veterans, if you served in any of these areas or if you think you may have been exposed to Agent Orange or were at Camp Lejeune for any period of time, it's worth filing a claim and letting the VA decide if you meet the criteria.
You can also have an environmental health registry examination done, which basically would just be a full examination and would get on record where you served in case they expand the locations or toxin exposures in the future and expand that to Parkinson's disease.
My slides aren't advancing. There we go.
How do you go about applying for VA service connection? First, it's important to explain that the Veterans Health Administration and Veterans Benefits Administration both fall under the umbrella of the Department of Veterans Affairs, but we function separately. The Veterans Health Administration is the healthcare system and VBA is the financial benefits side. VHA can provide medical support for VBA claims, but the determination of the claims is done by VBA only. It is strongly encouraged for veterans to work with a veteran service officer to help in the disability claim process, which can sometimes be complex.
Helen, who's going to speak next, is going to talk to you more about that soon. The ways that you can apply are by meeting with a veteran service officer, which again is highly, highly recommended. You can call the Veterans Affairs Administration and apply over the phone. You can go to the VA Disability Compensation website and download the form and mail it in. You can also do it online through eBenefits. Again, the benefit of working with a service officer is that they have the ability to follow your claim and track its progress, and help you if any additional information is needed.
Gretchen Glenn 00:22:56
I just wanted to highlight some of the VA benefits that might be available. I want to preface it by saying that this is not a complete list.
Eligibility, co-pays and available services may vary based on income, service connection status, level of care needed and which VA you go to. If you're interested in any of these programs or services and you're hooked into the VA already, the best place to start is by asking to speak with a social worker at the VA.
A veteran enrolled in VA healthcare has access to primary care services, which includes seeing a primary care doctor as well as receiving the pharmacy benefit, which can range between $8 to $10 for a 30-day supply of medication.
We have a lot of mental health care available through the VA healthcare system as well; rehab services such as PT, OT and speech; and many VAs have contracts with adult day healthcare programs in the community for veterans who may need increased supervision and socialization during the day.
There are contracts with home health aide programs in the community to assist veterans with personal care tasks, such as bathing, dressing and grooming tasks, and respite care services to provide a break for caregivers.
The home-based primary care program is for veterans who have difficulty or are no longer able to leave their home. If they live in a certain radius of the main VA medical center, they may be eligible to have a doctor and a care team come to their home to provide the care. The PADRECCs work very closely with their home-based primary care teams so that veterans avoid having to come back and forth to see us so frequently. We can co-manage a lot with them. It's been a very positive relationship with our home-based primary care teams.
VA also offers hospice and palliative care services for end-of-life care.
There is a lot of prosthetics equipment, which is durable medical equipment. This is a very big benefit that veterans may be eligible for because a lot of times insurance doesn't cover it and it can be expensive. These are things such as walking aids, canes, walkers, wheelchairs, scooters, stair glides, grab bars in the bathroom, raised toilet seats and dressing aids. It's very expansive. I always tell veterans, if you're in need of any medical equipment, talk to your VA doctor and let us see if we can order it for you first. If we can't, we'll let you know, but if you buy it, you won't get reimbursed for it. That's a huge benefit.
There are contracts with our community nursing home programs, as well as many VAs having their own nursing homes attached to them for veterans who can no longer be cared for at home.
Finally, the Caregiver Support Program is really focused on the caregivers of veterans. There are two parts to this program. There's the general program, which provides resources and support to care partners, and the comprehensive part, which also includes resources and support. Veterans who are eligible for the comprehensive program may have care partners who are able to receive a stipend to be a paid caregiver. There are specific eligibility criteria for that program, so if you have any questions, you can contact the Caregiver Support Hotline and they would be happy to answer those questions for you.
Again, in order to access these services, you must already be enrolled in VA healthcare.
Now I just want to highlight the partnership between the VHA, our Veterans Health Administration, and the Parkinson's Foundation. This was established in 2020 to improve the health, well-being and quality of life for veterans living with Parkinson's disease. This has been a very rewarding and fruitful partnership that continues to expand outreach to veterans, making them aware of the care and resources available to them. If you'd like to learn more about the partnership and resources available, you can visit the Parkinson's Foundation website listed here, Parkinson.org/Veterans.
Gretchen Glenn 00:27:22
That includes information on Parkinson's and veterans benefits, stories from veterans living with Parkinson's disease, and connections to veteran-specific events. It also includes a lot of our education materials that we've developed together as part of the partnership to help with our outreach efforts, such as the Veterans and Parkinson's fact sheet, the resource guide and postcards. We also do a lot of training together for both patients and providers.
I just wanted to show some of the impact of the Parkinson's Foundation and our Veterans Health Administration care and reach. You can see by looking at this map that the Parkinson's Foundation Global Network is represented by the gray circles that you see. The six PADRECCs are represented by the red circles, and the PADRECC Associated Sites are the blue that you can see on the map. You can see that there's a lot of overlap, that mostly all the PADRECCs have a connection or are in an area of a Parkinson's Foundation Center of Excellence, as well as many of the associated sites.
There is a lot of overlap there, which is great.
The PADRECCs and the Parkinson's Foundation Centers of Excellence do a lot of work together, and I like to highlight especially this concept of co-practice. Veterans who are eligible for movement disorder care at a VA do not need to give up their community neurologist. This is what we often refer to as co-practice.
PADRECCs and PF Centers of Excellence work together to ensure that veterans are receiving the best possible care with access to eligible benefits. That's really our goal. Veterans who already have a community neurologist can choose to keep that neurologist, and that person can manage your PD care. You can come to the VA at least one time a year to receive your VA benefits, such as medication, durable medical equipment, in-home support services and all those benefits that I mentioned earlier. The important thing is that you must go to the VA at least one time a year to maintain your VA benefits.
We do ask that the veteran choose one neurologist to be your director of care because we don't want two different doctors making changes to medications or your treatment without knowing it because that could cause a problem. For instance, we have a close relationship with the University of Pennsylvania as well as Jefferson Health, and a lot of our patients go back and forth between the two. We actually work very closely together and know each other very well. Even if a veteran is seen at one of those centers and they're a veteran, they will reach out to us to try to help get the veteran connected so they can ensure that they're getting the benefits that they receive. We don't compete; we work together.
A lot of the PADRECCs have a shared fellowship program with their closest PF Center of Excellence. We do a lot of joint education programs for both providers and patients. A lot of the physicians at the VA PADRECCs and associated sites have appointments at their local university movement disorder center, which is oftentimes a PF Center of Excellence. We do a lot of research collaboration together. Again, the focus is on working together to make sure that veterans are getting the best care and access to the benefits that they're entitled to.
Gretchen Glenn 00:30:53
I know that this is a lot of information. Oh, there we go. A lot of information that I went over today. Who can help you with this? Because it can be overwhelming.
I would suggest your first place would be to connect with a VA social worker if you're connected into the VA healthcare system. Every primary care team has access to a VA social worker. They can assess your needs and make you aware of the availability and eligibility of services and help advocate for you. In terms of the veteran claim benefit claim process, I highly recommend you connect with a veteran service officer. They can help you with applying for the claim, increasing a disability claim. They can help you with any follow-up that may be needed with the claim process and track it for you, and they can really advocate on your behalf to help you with the claims process.
You can also contact the Parkinson's Foundation Helpline. They have been gracious enough to have me provide training to them once a year to give them updates on eligibility and benefits through the VA and how to access care, and they've been really excellent. The Parkinson's Foundation Helpline team has really been great at asking people who call if they're veterans or caring for a veteran, making them aware of the services and even reaching out to us here in the PADRECCs directly to see if we can provide some assistance in making those connections. It's really been an excellent part of the partnership.
I encourage you to check out the Parkinson's Foundation Frequently Asked Questions, which PF and the VA developed together. It goes over a lot of what I talked about today in more detail. Also, connect again with a VA social worker or a veteran service officer, or call our hotline. We would be happy to discuss with you and try our best to answer questions that you may have or at least point you in the right direction.
Additionally, PF offers many resources to the PD population. Please feel free to check them out or call their Helpline, which is an excellent resource for the PD community. Many PADRECCs and associated sites have all of these materials in their clinic available for our veterans.
Here's a list of important contact information. A lot of the websites that I shared today, and all of this, will be sent out to you at the end of the presentation in about a week or so, like Elizabeth mentioned. I'd just like to thank you all again today for taking the time to listen to the presentation. To all our veterans out there, I thank you for your service. I have great appreciation for the Parkinson's Foundation and this partnership that we've had since 2020 in helping to outreach to veterans to make sure that you're aware of the services and resources that are available to you. Thank you very much for having me present again today.
Elizabeth Guerrero 00:33:52
Thank you, Gretchen, for offering us an outline of the resources available to veterans living with Parkinson's. We will have time for questions after our next presentation. Please continue to put your questions in the Q&A chat. I would like to introduce you to our next presenter, Helen Komninos McHugh. Helen is the Assistant Supervisor and National Service Officer at the DAV, serving out of the Philadelphia office.
Helen is an Air Force veteran, having served from 1990 to 1994, including deployment to Turkey at the beginning of the Gulf War. She holds a bachelor's degree in both psychology and criminal justice, as well as a master's degree in clinical mental health counseling. Helen began her work with the DAV in June of 2022 and has since risen to the role of assistant supervisor, bringing her expertise and dedication to supporting veterans every day. Welcome, Helen.
Helen Komninos McHugh 00:35:02
I just wanted to thank the host for inviting me to this presentation today. I can just start right off the bat with all the veterans that we serve from every branch of service: Army, Marines, Air Force veterans, Space Force as well, now that that has started. As Gretchen had mentioned also, those who have served in the Reserves and in the National Guard in active duty status.
I work out of the Philadelphia office on Wissahickon Avenue. Again, I am the assistant supervisor. Joseph Kaufman is our national area supervisor and the supervisor for the office as well. He sort of wears two hats. We have Jesse Butler in our office. He's our senior associate who's been with us for eight years now. Me as the assistant, I've been here for three years.
Mr. Danny Wyatt is also here just under three years now as well. He's an associate. We also have two apprentices that started working with us in January who bring a wealth of knowledge and who are off to a really great start. We have Andrew Brazington. He shows up between us here at the office one week, and then the next week he's actually at the VA Medical Center down on Woodland Avenue. He alternates, so he's in the trenches there at the hospital helping veterans who are in need there as well. Then we have our two support staff, Linda and Christine. Next slide, please.
We as a nonprofit organization have started about 103 years now. We've been in as a nonprofit group. It started with a handful of veterans who found the need that veterans coming back from World War I were really needing help. It started off with a small group out of Cincinnati in 1920, and it has grown ever since then. As I mentioned, it's a nonprofit. It's free for any veteran who steps through our doors or sends us an email. We do not charge anything. We're here to advocate for them and help them through navigating the process of doing claims, processing claims and figuring out how and what to do with their benefits.
Again, it's not just for the veteran, but their families as well, their spouses and their children. Depending on what type of disability rating they have, we're here to support the family and the children as well.
Helen Komninos McHugh 00:38:15
Next slide. How we fulfill our mission? Several ways. The first one, obviously, is benefits advocacy. What we do every day in and out when a veteran steps into our office is advocate for them, helping them navigate through the process of filing a claim, what kind of evidence they would need, what are they missing, do they need to see doctors, do they need referrals, anything that has to do with their disability condition that they might have that can be linked to active duty. We help them get those benefits.
Another way we help is through volunteerism. For example, we have our DAV vans that help veterans who do not have transportation. They can get free rides with our DAV vans. We have volunteer drivers who work every day. They go to the veterans' home, pick them up for their VA appointments, take them to their appointments, wait there until their appointments are finished and they don't have anything else to do at the hospital, and then take them back home. It's one of the ways that we volunteer our time, and anybody can sign up to do that.
We have veteran employment, lots of resources. We conduct job fairs throughout the year, locally and nationwide as well. Legislation is one of our big ones. We have an office out of D.C. just dedicated for legislation. As Gretchen mentioned earlier about the PACT Act, DAV was one of the main contributors to get that legislation of the PACT Act passed, and that was signed on August 10, 2022, adding all those new areas and locations besides Vietnam for Gulf War and for Vietnam as well. Lastly, outreach. This is part of what we do. We love these outreach seminars, doing presentations, getting the word out on what we do as DAV.
Next slide.
Helen Komninos McHugh 00:40:36
How we do this is the areas I'll talk about more in detail are powers of attorney and intents to file, what service connection is, as Gretchen already mentioned, disability compensation, special benefits that go to certain disabled veterans as well and VA medical benefits. Next slide.
How to start the process with filing a claim is granting us permission as an organization to represent you, and that's done with the power of attorney. All that does is give us permission to help you file your claim, figure out a plan of attack to file your disability claim and also get access into your VA file.
Second to that is an intent to file. We usually submit those two forms together. The intent to file just gives the VA benefit department a heads up that there's a claim coming, and that intent to file is good for a year. The VA essentially is giving you one year to be able to go to appointments, get connected with VA healthcare if you haven't already and give you time to gather that evidence that your VSO, me or whoever is helping you with your claim, gather all your evidence needed to file a claim.
Service connection. As Gretchen had mentioned, in order to get a direct link, a direct service connection, three things have to occur in order to get that. First, there has to be something that happened on active duty, whether it's an injury, an illness or an event that happened. Since we're talking about parkinsonism and Parkinson's disease, that would be Camp Lejeune water contamination or Vietnam War and Agent Orange. Agent Orange is what was distributed that gives a lot of veterans these diseases that are presumptive to those areas. What you also need is a current diagnosis of that injury or illness that you have.
The next thing that can happen as well is, if you do get that direct service connection, there are also other disabilities that can occur that are secondary to those conditions, such as Parkinson's disease. Resulting from the disease, there could be mental health issues that occur, such as depression, that can be considered a secondary issue that you can file a claim for. Again, you would need a diagnosis for that. Another thing that we see a lot of as a secondary issue is hypertension. Ischemic heart disease, even osteoarthritis, gastrointestinal complications, and those are all conditions that can be linked to Parkinson's. Again, the doctor would have to annotate those as such in your medical records as proof.
Helen Komninos McHugh 00:44:24
Next slide. Presumptive service, as Gretchen had also mentioned, has been established by the VA that it is linked to Agent Orange or the water contamination, along with other diseases as well, not just those two.
Again, special monthly compensation: some veterans are eligible for additional compensation ratings for the loss of use of organs. You can apply for case-by-case situations for aid and attendance, and also for those caregivers. They can apply for the caregiver program for those who are helping the veterans they take care of.
The next slide discusses more about the healthcare eligibility that Gretchen already went through and spoke about. We always suggest to sign up for VA healthcare. It's a very easy process to go through. It all depends on the ratings again. If you're at 0%, there is coverage for your service connection. Once you get up to a 50% disability rating, you can get full coverage except for dental. Once you get to 100%, your dental is included.
We're here to help you through that entire process. There are over 52 departments throughout the United States. We have offices in almost every state that help with this. Sometimes there are two offices, such as here in Pennsylvania. We actually have an office here in Philadelphia and an office in Pittsburgh.
Those are some social media networks that you can participate in. We're constantly adding our resources on those pages as to where our seminars are located, where you can sign up and where you can come see us. The last slides include our office email, which is the best way to get a hold of us. Again, thank you for letting me present today. I really appreciate it. Thank you.
Elizabeth Guerrero 00:47:06
Thank you both for such wonderful presentations. We're going to now transition into our Q&A portion of the program. Thank you, everyone, who has been putting your questions in the Q&A. Please feel free to continue to do that, and we will dive right in. Gretchen, this question is for you.
What resources are available for veterans with Parkinson's who are determined to be non-service connected? If their Parkinson's disease is determined as non-service connected, however they do have Parkinson's disease, what kind of resources are available to them?
Gretchen Glenn 00:47:58
Good question. You can still apply for VA healthcare, and you may still be eligible to receive VA healthcare. It just may depend on your income. That would be the first step: apply for VA healthcare. If you are eligible for VA healthcare and you enroll in the VA, you can still be eligible for things such as the home health aide, adult day program, all of those things that I mentioned on that slide. However, there could be some copays involved. There could be some waitlists depending upon which VA you go to.
The only one that I can think of on that list that you would not be eligible for is VA payment of nursing home placement because you need to be 70% service connected or more to be eligible for placement in a VA nursing home or one of our contracted nursing homes. The first step is really to apply for VA healthcare because there's a good chance you may be eligible for that. Then you can again meet with a social worker at your VA to find out what resources are available, what you might be eligible for and if there's a copay. If there is a copay, it's a pretty modest copay compared to the community.
But durable medical equipment, that's a big one. As long as there's a medical justification, you might need to be evaluated by a PT or an OT. That's available to you based on medical need, not service connection. That's still a huge one.
Elizabeth Guerrero 00:49:30
Thank you. Thank you.
Helen or Gretchen, if any of these questions are directed at you, but you want to add something to the answer, please feel free to chime in and answer. This next question: for veterans who live in areas with limited VA resources, what options are available for accessing timely and specialized care? This comes from someone who lives in a remote area, and they do not have access to a movement disorder specialist in their area either.
Gretchen Glenn 00:50:15
The PADRECCs and associated sites can all provide care through telemedicine, so through the computer. If you do not have access to a device, such as a smartphone or a computer that has a webcam camera, or Wi-Fi, the VA may be able to provide you one. I would still suggest that you reach out to our hotline number and talk with us, and we could see if there is an associated site or one of our PADRECC sites that can do it virtually with you.
Typically, we do like to see someone in person at some point, but we understand that that's not always realistic. We can do our best to at least see you over video.
Elizabeth Guerrero 00:51:06
Thank you.
The next question: does the VA plan to conduct more studies to expand on the known toxins affecting veterans, for example, exposure to toxins in the Navy submarine community?
Gretchen Glenn 00:51:26
I can't speak directly to that specific naval exposure, but I can tell you that there is ongoing research going on about toxin exposures. That is how, over the years, we started out with Parkinson's not being service connected, to it then becoming service connected and continuing to expand on the locations for Agent Orange exposure. Before, you had to be boots on sand in country. Then they started to gradually expand it out to the Blue Water Navy veterans and then to bases that were housing it, bases where the airplanes were carrying it, if you worked on some of those airplanes.
Over the years from 2010, it has continued to expand. We're hopeful that that will continue to happen. Yes, research is continuing, especially looking at some of the Gulf War toxin exposures.
Helen Komninos McHugh 00:52:22
And can I add something to that?
Gretchen Glenn 00:52:25
Please.
Helen Komninos McHugh 00:52:26
On top of that, from my point of view, we always tell the veterans, let's put the claim in because that triggers even more research. That's how it all really starts. If the veteran puts in a claim for anything related to toxins, the VA monitors that, and that's what triggers more and more research to get compiled and researched. We always say, whether you get the benefit or not, you might not help right now, but a few years down the road it could help your other fellow veteran. We always stress that as well. Very important.
Gretchen Glenn 00:53:11
Just to add, Helen, and you can correct me if I'm wrong, the award can go back to your date of diagnosis. Even if you're not considered service connected today when you applied because you weren't in one of those locations, if it then becomes related, it could go back, you know, 10 years, 15 years from the date of your documented diagnosis, correct?
Helen Komninos McHugh 00:53:37
Yes, case by case though. That can't happen at the regional; it has to go through the appeals process. But it can, yes.
Gretchen Glenn 00:53:53
That's why it's important to apply if you think you may fall into that criteria.
Elizabeth Guerrero 00:54:02
Thank you both. That's very helpful.
If someone is seeing a neurologist currently, they don't fall under their community care for PADRECC. What would you recommend? Would you recommend switching so that they are under community care, or what would you recommend as far as their care team? Sorry, that's not very specific.
Gretchen Glenn 00:54:42
I'm not sure what you mean by community, if you mean a community neurologist outside the VA.
Elizabeth Guerrero 00:54:51
I think the question is for community care outside of the VA. We had a community care neurologist and I wanted to switch to a VA neurologist and was told that we cannot do both community care and VA. Is that correct?
Gretchen Glenn 00:55:09
Maybe if it's paying. If the VA is paying for you to see a doctor in the community, if that's how I'm interpreting it, then that may not be a possibility, but you could always ask for a second opinion by a PADRECC, I believe, because we specialize in it. I'm not 100% clear. Again, you can call our hotline number and maybe we can hash it out a little bit further to figure out on a more personal basis how that might happen. There could be a lot of small issues there that I'm not quite understanding. Feel free to reach out to our hotline number and we can research a little bit further with you.
Elizabeth Guerrero 00:55:56
This is from a caregiver. Their loved one does have Parkinson's disease and has a diagnosis. They know that their loved one living with Parkinson's disease was stationed in a place where they were exposed to Agent Orange at a point in time, but it hasn't been determined yet in their record that the Agent Orange exposure is PD-related. What would be some next steps for them? What would they need to do?
Helen Komninos McHugh 00:56:37
First, file the claim for the Parkinson's disease. I always suggest writing a personal statement as well: what base they were located at. They can even add articles talking about the Agent Orange that was stored there.
File the claim and see what happens. Even if it gets denied, there's still ways to go about doing that and getting medical opinions from your doctors. That's a great source of information because they can reference medical journals and other medical articles that we can't get hold of. They can put together a medical opinion package to go with the claim. Again, even if the VA doesn't recognize it as a location with presumptive Parkinson's associated with it, appeals can get it into a judge's office. There, they can determine yes or no. Even if it does get denied at the local regional level, we can appeal it. It goes up to the next step, and the judges do have that ability to overrule the regional office.
Elizabeth Guerrero 00:58:10
Thank you. Thank you so much, Helen.
We have a question just about the high incidence rate of PD in the last couple of decades. Are there any thoughts on why, in the past couple of decades, there has been an increase in Parkinson's that has been service-related?
Gretchen Glenn 00:58:39
Can you repeat that for me?
Elizabeth Guerrero 00:58:43
The question is: any thoughts on why there seems to be a high incidence of PD in the last couple of decades, specifically for the veterans community? I think this is a lot related to just the research and knowledge has increased significantly. Any thoughts from the both of you would be helpful as well.
Gretchen Glenn 00:59:12
I think you're correct, Elizabeth, that it's mostly based on the research. I think there's a lot more advocacy that's going on for veterans with Parkinson's disease that is helping to push the research along further and showing that there's a potential connection. I think there's a lot of research out there just showing that toxins in general that even people who aren't veterans have been exposed to, that there's been an increase. I think all of those factors are showing that, but that's the benefit of having one of our missions be research: really looking into those areas to see how there could be an association between military service and exposure, or even traumatic brain injury.
Elizabeth Guerrero 00:59:58
Great, thank you. Where could someone find a list of all of the VA nursing homes?
Gretchen Glenn 01:00:10
That's a good question. I'm not sure of one website. I can look for it and drop it in the chat, but there might be a facility locator. I'm not sure. All across the country, I'm not sure. I just go by where the veteran lives and go from there.
Elizabeth Guerrero 01:00:36
Thank you. Helen, this one is for you. If someone files a claim, really maybe for both of you, if someone files a claim for eligibility, how long can they anticipate having an answer? They're able to look online and see the stages, but there's just curiosity from the community about how long they would be waiting to hear back.
Helen Komninos McHugh 01:01:21
It all depends. It can take anywhere from three to 12 months to get a decision. It all depends on the veteran's unique claim, how many conditions they filed for, whether all the evidence was there to begin with or not. It all depends on if that evidence is within the VA. Sometimes it can happen quicker. But if you're adding community, private physicians' medical records, sometimes it takes a while for the VA to be able to get those records from those outsourced providers.
It all depends on how well your claim was put together and how much evidence has been gathered or not, and if they can even get it. Sometimes, there are holdups within the VA as well. It all depends. We've seen claims come back in two months. We've seen claims take as long as 16 months sometimes. It's gotten a lot better these past 10 years, 15 years, just because everything is done online, but it still takes time.
Elizabeth Guerrero 01:02:44
Thank you. To Gretchen's point earlier, go down to the VA and meet with someone, have them help you fill it out and hand it in personally.
Okay, next question. Can you please elaborate on what kind of help there is for caregivers of veterans, and is it covered by the VA?
Gretchen Glenn 01:03:19
Some VAs can do CHAMPVA. Not all VAs do CHAMPVA, which is for spouses that can get some medical care. Helen, I'll have you elaborate a little bit too. I'm not as familiar with CHAMPVA. Caregivers, generally, at least through our VA, who don't accept CHAMPVA, can't get medical care coverage, but they could be eligible for the Caregiver Support Program if they meet the criteria for that program.
There's also the, if your veteran is not service connected, you might be able to get a non-service connected pension that could help pay for additional care for your veteran or loved one you're caring for. There might still be some options. Again, if you're enrolled in VA healthcare, it would be good to talk to a social worker at your hospital to see what might be available there and what you might be eligible for. On the claim side, I'll let Helen take that one.
Helen Komninos McHugh 01:04:24
For spouses to receive CHAMPVA, the veteran must be 100% disabled. For spouses and their children to get CHAMPVA, that's the qualification for that side of it.
Elizabeth Guerrero 01:04:43
For the caregiver stipend, for the caregiver support services, is that something where the caregiver would need to reach out to a VA caregiver support specialist to inquire about that and see if they qualify for that program?
Gretchen Glenn 01:05:12
Yeah, you could go to caregiver.va.gov, the caregiver support website. On there, you can see the breakdown of the two programs that they offer. You can download the fact sheets that talk to you about eligibility for the programs, and then you can connect with the caregiver support person at your VA to apply and see if you're eligible.
Helen Komninos McHugh 01:05:36
Yeah. On our side, the DAV also has a caregiver support program as well. We don't give the stipend like the VA does if they get granted, but we do have the support for the caregivers as well for classes and extra resources. That's also on the DAV.org website. They can sign up for that. Just another resource to have in your back pocket.
Elizabeth Guerrero 01:06:09
Absolutely. Thank you.
In regards to research, is there a way on the VA website to see what is being researched at the moment as far as toxin exposure?
Gretchen Glenn 01:06:28
Not that I'm aware of. That's my honest answer. I don't know any place where the research is listed, but if you go to public health...
Helen Komninos McHugh 01:06:43
Did you hear about the new website?
Gretchen Glenn 01:06:46
The website lists a lot of information on there about toxin exposures, and from there, you can get linked to the locations that currently fall into the presumptive sites. There's a lot of information on that website, and that can be found in the Parkinson's Foundation Veterans booklet that we put together, all of this information.
Elizabeth Guerrero 01:07:15
Thank you. This is another question from a caregiver. Their loved one living with Parkinson's did not qualify for VA healthcare because of income. Is qualifying for VA through Parkinson's benefits a possibility just through their Parkinson's connection?
Gretchen Glenn 01:07:43
Not just for having the diagnosis of Parkinson's. You would have to file a service connection claim, and then if you were rated service connected for your Parkinson's, you then can apply for and be eligible for VA healthcare.
Elizabeth Guerrero 01:08:02
Can the VA help coordinate Parkinson's care if someone is seeing VA physicians and non-VA physicians or specialists? Would the VA be able to coordinate the non-VA specialists as kind of a continuum of care? Would it need to be all VA specialists in order to have that all coordinated through the VA?
Gretchen Glenn 01:08:37
You have to be eligible for VA healthcare and be seeing, you don't have to see a PADRECC, you could see a primary care doctor, but they're not going to treat you specifically for your Parkinson's disease. If you don't have access, if that hospital doesn't have access to a PADRECC or an associated site and you don't want to do telehealth, you can request that your primary VA doctor see if they'll send you out into the community to see a VA neurologist or Parkinson's specialist that might be closer to you. Then your primary care doctor could help coordinate some of that care.
Then you might be eligible, as long as you're enrolled in the VA healthcare system, even if it's just with primary care, for a lot of those services that I mentioned: the home health aide, the medication, the durable medical equipment. Whether you're connected to a PADRECC or not, as long as you're enrolled in healthcare and seeing a primary care doctor, you can access those. If you wanted to seek care in the community that the VA doesn't provide, if we don't provide it, the VA will send you out in the community for it.
Elizabeth Guerrero 01:09:42
This one is specific to improvements of the home, installation of a walk-in tub or shower for someone who is living with Parkinson's. How would they go about seeing if that could be covered or part of a grant? Is there a grant program through the VA? How would they go about next steps for doing that?
Gretchen Glenn 01:10:08
There is what's called the HISA grant, the H-I-S-A, the Home Improvements and Structural Alterations grant. It's a one-time lifetime grant that has different limits for a non-service connected veteran to a service connected veteran. It requires, usually you have to be hooked in, I don't know if you have to be hooked into the VA. I know to get the application for us, we have to refer a veteran to our rehab department for an evaluation, and then they get an application. You have to get contractor quotes, submit it, and it gets reviewed.
Oftentimes it's used to make entrances and exits to the home easier, widening some doorways to make them more accessible. Walk-in showers is one of them. Now, it may not cover the entire cost of the renovation, but it could give you money toward a cost. If you're hooked into the VA, talk to your VA primary care doctor or a movement specialist about it, and they can kind of take it from there. Helen, do you know if you could get that without being enrolled in the VA?
Helen Komninos McHugh 01:11:19
I want to say I think you have to be for the HISA grants. Again, it's a one-time thing for the structural type of thing, for the structures inside the home and outside, for ramps getting into the front door as well. They do that.
I do know local DAV chapters also, the members have, let's say, contractors that work for a minimum amount of money to help compensate for the difference if the VA doesn't help pay or you can't get enough through the grants. Our local chapter has a contractor who specifically gives discounts for veterans and lowers their prices, sort of like a volunteer as well. They'll have to buy the materials, but they won't charge for labor or vice versa.
I know a lot of DAV chapters, their people help for the differences sometimes.
Gretchen Glenn 01:12:38
There's also a Specially Adapted Housing grant that you can look into as well. There are options, so it's worth asking.
Elizabeth Guerrero 01:12:50
Thank you. As far as asking, would calling the Helpline be a good option to just start navigating that through the VA?
Gretchen Glenn 01:13:05
I would suggest connecting with your local VA medical center social worker because they would know the process at their VA. All VAs have similar programs, but how they're run and application and eligibility can be different from one VA to the other. It's best to go through your local, as well as I would suggest the same for your service officers, is to connect with your county VSOs or your local VSOs.
Helen Komninos McHugh 01:13:35
Yeah. A lot of those also go through the prosthetics department.
Gretchen Glenn 01:13:43
Which is through a local VA. So if you don't live in Philly and you go to a VA outside of Philly, we would have to refer you back to your home VA for that service because it's more of a funding issue of how it's paid out. It's good to work locally if you can.
Elizabeth Guerrero 01:14:08
Thank you. We have time for a couple more questions. This one is from a caregiver. Her husband receives his Parkinson's medication through the VA. This medication, however, was recently denied. Is there a way to appeal?
Gretchen Glenn 01:14:32
I am, that's a good question. I'm not sure why it would have been if it was approved before and now it's denied. It's hard for me to answer that question without knowing further details on it. I would say you could reach out to us. I don't know if we can give you a direct answer, but we can see. You might want to ask your prescribing doctor to talk to their pharmacist, their local pharmacy, to see if it's not on formulary anymore. I'm not sure.
Elizabeth Guerrero 01:15:12
Thank you.
Last question for each of you. Really appreciate walking us through all the valuable resources that you have shared with the Parkinson's veteran community today and for all the support. If you could pick just one resource, whether it's a program, tool or connection that every veteran or caregiver should know about, what would it be and why?
Gretchen Glenn 01:15:45
Ooh, good question. One benefit or resource? There's so many.
I would say getting connected to the VA in general, if you're not already, because it could open you up to a lot of benefits that you're not currently receiving, especially through health insurance. If you don't need it now and you might need it later, it's good to be enrolled and go one time a year to keep your eligibility up. Connect with a Veteran Service Officer to see if your Parkinson's could be service related. Get an environmental exposure exam done so you have it documented.
As we know from seeing how the history of this has all gone, it started out not being service connected, not being eligible to care, to over the years, the past 15 years, that's expanded greatly. That would be, I know that's not picking one, it's picking several, but I would just say reach out and see if you can get connected to care. It's not going to hurt you. You can always not follow with the VA any longer if you're not happy with it, but you don't know until you try it and you see what might be there to help you.
Elizabeth Guerrero 01:17:18
Absolutely. Thank you. And Helen?
Helen Komninos McHugh 01:17:22
The same. The VA Public Health website has a lot of great resources on it. There are several tabs. It lists everything. For all the presumptive diseases, it has all the resources that the VA uses. There are links. Take advantage of it. There's a lot of good information on the VA Public Health website.
File the claim. If there's any doubt, just file a claim. There's no harm in it. It just helps further generations.
Elizabeth Guerrero 01:18:06
That's such a great point.
Thank you. Thank you both for sharing your valuable time and expertise with us today. We are truly grateful, and I hope that everyone who attended participated in this. Thank you everyone for your engaging questions. I hope everyone has gained new insights and feels empowered to apply this knowledge to enhance your quality of care and strengthen your connections, as we know just how important that is.
Again, thank you. Today's webinar and the entire Veterans Webinar Series is presented with support from the Don and Lorraine Freeberg Foundation. We want to take a moment to thank the Freeberg Foundation for helping to make these programs possible.
The Parkinson's Foundation wants to hear from you. Through our My PD Story page, the Foundation shares stories written by anyone in the Parkinson's disease community. These stories help bring awareness to this life-changing disease and help to inspire others.
As a veteran or loved one of a veteran living with Parkinson's, you can share your experience because your PD connection is unique. We encourage you to submit your PD story and share your experience with others in the community. To learn more and to submit your PD story, please visit Parkinson.org/MyPDStory.
Don't forget to visit our webpage and explore the resources offered by the Parkinson's Foundation that can support your navigation of living with Parkinson's as a veteran. That website is Parkinson.org/Veterans.
Please always remember that we're here for you. If you had a question today that was not answered, please reach out to our Helpline by calling 1-800-4PD-INFO or emailing Helpline@Parkinson.org. You can use that same contact info in order to order free resources, educational book series and our hospital safety kit as well. We thank you for joining us today, and we hope to see you again soon.
Thank you, everyone.
