So, you have MS. You may also be a Veteran of the United States military. What kinds of benefits and resources are available to those who have served and are now living with this debilitating disease? Here we hope you’ll find our beginner’s guide helpful in your search for benefits and resources.
Having MS and navigating the world of healthcare is dangerously daunting all on its own. Throw in some confusion about VA benefits, and you have a confusion cocktail to contend with (see what I did there?).
Before we dive in, just be warned: there is a plethora of information. Take your time researching, because there are a lot of links in this blog post. Because there’s so much info to take into consideration, we will do our best to update this blog as necessary. Check back regularly for more information as we come across it.
Over this past weekend, Jim struck up a conversation with an Air Force Veteran who has MS. He was surprised to learn that MS is, in fact, not covered under the Agent Orange Act or the PACT Act. MS has not been identified as an illness associated with the substances that these Acts target.
In his conversation, and subsequent research later on, he found that many people (perhaps as high as 60% of people) were denied upgrades to their disability rating. The VA, depending on evidence, will often award up to 30%. However, sometimes specific symptoms will allow for a higher percentage; one of those being chronic fatigue, which gets a 60% rating all on its own.
Jim also states that Veterans who are prevented from working as a result of their MS may be able to receive a benefit called “Total Disability on Individual Unemployment Ability”, or TDIU. This benefit compensates Veterans at the 100 percent rating, even if their overall disability rating may be less than that. Veteran’s symptoms must be Service-Connected (SC), and already have a 60% disability rating OR have “2 or more service-connected disabilities—with at least 1 rated at 40% or more disabling and a combined rating of 70% or more”. You also must not be able to hold down a steady job that would have supported you financially. Definitely click on he link above to read more about it and see if you qualify.
The website states: “The VA provides health care services to Veterans with MS from the time of diagnosis throughout their life, whether or not they have a service-connected or non-service connected status. If an individual had symptoms of MS in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability.”
For those who are new to the benefits game:
The website suggests filling out the VA Compensation and/or the VA Pension form available online or at his/her local medical center for starters.
But oh my goodness, that’s a lot to sift through. Here are a few things on that web page that stand out to us:
Info on Filing and Intent to File – Sounds a little silly, but you may be able to receive retroactive payments for the time between when you submitted your intent to file and when they approve your claim.
Specially Adapted Housing Grant (SAH) for those who own their home, or will own their home, this is a grant that allows adaptive modifications to your home. Can receive up to $109,986 as of 2023
Special Home Adaptation Grant (SHA) is the same as the above, but with different qualifications. Can receive up to $22,036 as of 2023
Temporary Residence Adaptation for those who are living in a temporary family member’s home that needs changes in order to meet your adaptive needs. You must meet all the qualifying criteria for one of the two grants above. The amount changes depending on which one you qualify for.
Many people with a chronic or debilitating illnesses will tell you that advocating for yourself and your needs is of utmost importance. When dealing with and anything VA-related, persistence is key.
It’s tricky, and it’s a lot to deal with on top of managing symptoms.
Keep in touch with your primary care provider and your MS social worker. They’ll be able to help you refine your case for increasing your disability rating. They’re an invaluable source of information and help in signing up for various benefits. The provide supportive counseling to assist Veterans on the physical and emotional impact that MS can have on you and you family. They’re there to be your advocate, your negotiator, your case manager, and more.
If you don’t have a social worker on your team, look for the Social Work department at your local VA, or talk to your primary care provider or MS Specialist.
Here’s a summarized list of just some benefits offered at the VA. These programs require the help of a social worker:
Veteran Directed Care – offers monetary help with personal care services and daily living. Veterans are given a budget, and can even hire their own workers.
Medical Foster Home – This is a residency that’s similar to a nursing home, except Veterans are housed in a private home. Caregiving staff is on call 24/7. The VA ensures that these staff are well trained.
Captain James “Jim” Marshall wants you all to know that if you have any questions pertaining to benefits and navigating the system, feel free to send him an email:
Marshall-James@comcast.net
As we mentioned above, this article is just a small portion of info about benefits in the VA system. We will continue to update or even create new blogs as we see fit.
Above all we sincerely thank each of our Veterans for their service. We love and appreciate you!
Don’t forget to check out our MS Peer Support Group, which meets every 2nd and 4th Tuesday of the month
UPDATE #1 – Jim let me know that Amyotrophic Lateral Sclerosis (ALS) “is a presumptive condition for veterans with 90 days or more of continuously active service in the military. Any veteran with ALS should apply for Disability Compensation.”.
He goes on the state “Looking into justifying MS [and ALS] as Service-Connected, it is not as difficult as it seems. If the Vet was exposed to Hazardous Materials, most of us come across such things even in the states, then present VA thinking has MS service-connected because ‘IT IS AS LIKELY AS NOT’ caused by the exposure.”
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
You’ll love April’s guest, Tara Lazar!
Street magic performer. Hog-calling champion. Award-winning ice sculptor. These are all things Tara Lazar has never been.
Instead, she writes quirky, humorous picture books where anything is possible. Tara has been, however, a champion adult figure skater, but because of primary progressive multiple sclerosis (MS), she now walks with a walker and drives with hand controls.
She can still figuratively skate, as seen in her book, Little Red Gliding Hood; put on a pair of detective gumshoes, as she did in 7 Ate 9: The Untold Story; and trek into the world of “fun and entertaining vocabulary building” for older kids in her most recent book, Absurd Words, which won a Golden Kite award from the Society of Children’s Books and Illustrators.
She is known by other kid lit writers for her blog, Writing for Kids (While Raising Them), and for hosting her annual Storystorm challenge that attracts more than 2,000 writers to come up with thirty picture book ideas in thirty days.
Tara read from her award-winning kid literature, but let’s be honest, can be enjoyed by kids of all ages!
FDA Approves Briumvi (Ublituximab) for Relapsing Multiple Sclerosis
In case you haven’t heard the news by now, the FDA recently approved Briumvi (Ublituximab), by TG Therapeutics, for the treatment of relapsing-remitting Multiple Sclerosis.
The drug is now the 3rd CD20 anti-b-cell therapy on the market for Multiple Sclerosis. Up until now, Ocrevus (ocrelizumab) and Kesimpta (ofatumumab) were the only B-cell targeting drugs available on the market.
This is great news, because B-cell therapies, such as the drugs named above, have all been proven highly effective as disease-modifying therapies for MS.
Given as a twice-yearly infusion, Briumvi is currently available for Relapsing-remitting MS (RRMS), Clinically-Isolated Syndrome (CIS), and Secondary-progressive MS (SPMS).
According to the MS News Today article below, “Briumvi was engineered to be more potent than other anti-CD20 therapies, allowing for lower doses and shorter infusion times.”
MS is a disease of the central nervous system that specifically targets the myelin sheath in the brain and spinal cord. Any time those with MS can get a new medication available to them on the market, it’s a huge victory in the fight against a disease that can take away almost every function in the human body.
If you’re one of us in the MS “club”, join us every 2nd and 4th Tuesdays of the month for our MS group meeting here
On August 31st, we had an incredible webinar tilted Mental Health and Multiple Sclerosis. Featuring Dr. Lauren Strober (Senior research scientist in the Center for Neuropsychology & Neuroscience Research at Kessler Foundation and assistant professor of Physical Medicine & Rehabilitation at Rutgers University New Jersey Medical School), Carly Podzikowski, and Kim Stroeh for tips and tricks on how to “feel” through the emotions that come and go with the crazy ride that is Multiple Sclerosis.
You might even feel like you’re always getting a “new normal”. Sometimes it can feel like a wild roller coaster ride if you’re not prepared. Let us offer a little guidance on how to go with the flow and how to change course when you need to. We’ll be talking about emotions and grief throughout different stages of an MS diagnosis – whether you were just diagnosed last week or last decade (and beyond!).
Learning how to deal with all aspects of this illness is a challenge, but we’ll walk you through some adaptive strategies.
If you’re in need of a little pick-me-up, or perhaps some much needed time making art as “therapy” with other people in our amazing AnCan community, we’ve got something for you.
AnCan’s Summer of Art
AnCan Foundation has been awarded a grant from HealtheVoices Impact Fund at the Community Foundation of New Jersey funded by Janssen Pharmaceuticals, Inc. to provide art “therapy” to brighten all our lives! We’re calling this art “therapy” series the Summer of Art!!
Award-wining arts-in-healthcare teacher, Hannah Garrison, who lives with MS herself, will AMAZE and ASTOUND you with your own abilities!! No art experience needed – just curiosity and a little creativity.
And it’s accessible to all – even those with ‘hand issues’. AnCan wants this to be disability-centric so we are sending you art supplies Our grant funds 4 classes through 2022 – first one on June, 16!
To attend fill out this form by June 9th to receive FREE art supplies, first-come, first-served …. markers, paper, and adaptive writing aides. Class size is limited!
First class – June 16th from 8-9:30pm EST / 5-6:30pm PST
A link will be provided for the class by email!
YOU’LL be drawing Van Gogh inspired sunflowers …. wondering how??
Hannah will break it down into small, manageable petal sizes that you can scribble through bit by bit until voila – SUNFLOWERS AND A VASE!!
And it’s interactive with lotsa space for queries and questions.
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
EVERYONE please complete the form – if we run out of supplies, you’ll have priority for the next class! Your application is how we keep track.
Complete the form by June 9th to receive free supplies and the URL to attend!
In case you haven’t heard the news by now, the FDA recently approved 
Hello, Friends and Family of AnCan.
Award-wining