ALS-Rules of Engagement

ALS is a gut punch of a disease. You can’t catch your breath, you see stars and are unable to speak, for like months. At least that is what it was like for us. As we learn ways to navigate this life which of course includes navigating the VA, we want to share that with other’s, especially our brother’s and sisters that have served.   Navigating all that is VA can be difficult, ensuring services are provided can turn in to a full time job. Hopefully, you will find nuggets of information or in this case, Rules of Engagement,  that can help you on your journey. The goal is to spend time with your person with ALS (PALS) and not fighting for services.

Where do we start….from the beginning I guess.

So, you have ALS? That sucks!

Getting the Benefits Ball Rolling:

If you are a military veteran and have just been diagnosed with ALS contact a Veterans Service Officer (VSO) ASAP. ALS is a service connected disease and a VSO is someone that can help facilitate your contact with the VA. In our case, our VSO filled out the necessary paperwork to get the Big He’s disability benefits started. There are many organizations that have VSO’s so it won’t be hard. We used the Paralyzed Veterans Association (PVA), but there is also the Disabled American Veterans (DAV) and The Independence Fund (TIF).

You should also start looking into Social Security Disability Insurance (SSDI) benefits. The Big He was able to work for another 7 months before he retired early. Once he did retire, we began the process of obtaining SSDI. While you can be approved rather quickly due to an ALS diagnosis, there is a 5 month waiting period for the actual disability payments and your ability to utilized Medicare begin. There is currently legislation being floated in Congress to waive this 5-month period but it has not passed. So take that into consideration when figuring things out…like finances.

Once you are in the system, I really encourage you to get registered at ebenefits.  This site will let you track compensation and education benefits, grants you are eligible for, VA letters relating to your disability/claim and the status of claims and payments. It is a great site that provides a wealth of information.

Initial Benefits Started-Check. What’s next?



First, take a breath. While ALS is a terminal disease, this does not mean tomorrow is the end. I can say this, because that is pretty much how we thought of things in beginning. That death was imminent. That being said, I prescribe to the idea of being proactive as opposed to reactive. We are not quite 2 years in and I think we are doing pretty good with making sure things are in place. This lets us take that breath and not worry about equipment or services right now. We can worry about the disease and the progression, which alone is huge.

Specially Adapted Housing (SAH) Grant-This grant allows you to modify your home so you can continue to live independently in a barrier-free home. It can be used in a number of ways. You can use it to construct an adapted home on land to be acquired, build on land you already own, remodel and existing home or apply it to your mortgage of an already adapted home.  Something that is not readily known is that this grant can be used up to 3 times. This is because the grant does increase based on the cost of construction index. The adjustments in the amount of the grant take place each October 1. This is good to know if you there are some things you want to do but the budget does not allow, you can plan for phasing in some of the changes or use the increases to pay toward your mortgage. Pay toward your mortgage, what? Yes, as part of the SAH Grant, you will qualify to receive the Veterans Mortgage Life Insurance (VMLI). This is mortgage protection insurance that will pay off your house when you win the final battle with the  Beast.

So what am I talking about? Here is an example: You utilize the full amount of the grant during a remodel of your current home in 2017. Cause let’s face it, bathroom remodels can be expensive. Let’s assume your current mortgage is $210,000. [Side note, as part of remodeling your home there is also a home mortgage insurance provided by the VA that you can use. Unfortunately the insurance is only up to $200,000]. So you owe more than the mortgage insurance, what do you do? If the SAH increases you can use that increase to pay towards your mortgage. But here is the kicker,you can only use it three times. Some people have waited a few years before touching the grant again to allow for the increase to be enough to pay down the mortgage. Once you are below $200,000, you can then apply for the VMLI and because you have ALS which is service connected at 100% you are exempt from the premiums. This provides you the veteran with the knowledge that your spouse and/or kids, will be able to stay in the home after your passing.

On a personal note, while to the outside this sounds amazing to get a remodel and have your mortgage paid, you have to keep things in perspective…we would rather have our spouses to grow old with then a paid off,  handicap accessible home that is a constant reminder your future was taken from you by Alpha Lima Sierra.

So contact your VA Specially Adapted Housing Agent and get the ball rolling. Do some research and try and think about what your needs will be when the disease has left you paralyzed. Ask other veterans what they did and what they would do over if they could. We learn from one another.


Automobile Grant

There is financial assistance available to help you purchase a car/van/truck for when you need something that can haul you and that big ole wheelchair around. In 2017 dollars, the amount is $20,114.34.

Special Adaptive Equipment Grant

You also qualify for the adaptive equipment grant. This allows you to have your vehicle if not already equipped, equipped with power steering, power windows, power seats or for you ALS folks, equipment necessary to assist getting in and out of the vehicle. Think wheelchair ramp and all things that go with modifying a vehicle to accept a wheelchair.

Contact your Prosthetic Department to start looking into these grants. Also you should do some research as to the type of vehicle you will get. Will you load from the side or back? If you are a tall person will you have enough headroom once you are in your wheelchair. Just a few things to think about.


The VA is actually pretty great when it comes to equipment. They provide veterans with some of the best equipment out there. The problems we have dealt with is getting the actual equipment in a timely manner. I should clarify, early on getting equipment was a problem. Now days, things seem to be running much smoother…for now anyway.

One document you should have is the VA Handbook 1101.07. This Handbook is more like a guidance document for procedures the VA should be following when working with patients with ALS. The Handbook can be found here: VHA Handbook 1101.07

The reason to point out this Handbook is that there is a section that deals with Durable Medical Equipment (DME) and need to expedite DME requests. Many providers with the VA working with ALS patients are unaware of this document so I do suggest providing the case manager or social worker a copy or a link so they can ensure they are following VA policy/procedures when it comes to meeting the needs of Veterans with ALS.


The ventilator was one of the first major pieces of equipment that we needed. The Big He’s breathing was impacted pretty early on by ALS. It took us time to obtain this piece of equipment so I suggest discussing with your VA ALS Team the timing of obtaining your ventilator. Also make sure that you are provided with training and not pushed off to watch a YouTube video.



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