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.

NOTE: Working with the VA

Just wanted to offer some food for thought when working with the VA. 

I am a firm believer that you should always work from the bottom up. That is, work with your caregiver, patient advocate, nurse case manager that person that you have the most interaction with. They will be the best source to get things going. That being said, your needs may at some point surpass what they can do for you or they will not have the authority to provide answers to your questions. When this happens, move up the chain of command. Always keep in mind the VA is providing a service to you, the Veteran and Caregiver. Arm yourself with information. The VA, as a government agency, operates via laws, rules, policy and guidance. In a perfect world we would not need to be as knowledgeable about VA operations and would be able to concentrate on the disease but this is not a perfect world. You must educate yourself to be able to distinguish between information that is accurate based on rules and policy and information that is being provided based on opinion and a misinterpretation of those rules and policy. If your “gut” tells you something doesn’t seem right, listen to it and ask more questions. Sometimes it takes asking for something in different ways because the terms used are so important. When you believe that requests are not being followed up on or the answers continue to not seem correct then get help from your elected officials. Your elected officials have staff that are experienced and more importantly have the ability to work at a higher level within VA management. Sometimes the problem may be poor communication within the VA or even the information not being allowed to move past a certain management level. Be an advocate.  Do not be afraid to questions and/or demand care that meets your expectations. This is ALS. There are no second chances and time is not on our side. We must do the things we need to do in order to receive the services and benefits our Veterans have earned through their service to our country. 

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.

Special Housing Adaptation Grant (SHA):  

 SHA grants help Veterans with certain service-connected disabilities adapt or purchase a home to accommodate the disability. You can use SHA grants in one of the following ways: 

  • Adapt an existing home the Veteran or a family member already owns in which the Veteran lives 
  • Adapt a home the Veteran or family member intends to purchase in which the Veteran will live 
  • Help a Veteran purchase a home already adapted in which the Veteran will live 

The SHA Grant for FY 2018 is $16,217. 

Clothing Allowance: 

 The VA provides a clothing allowance for those veterans who have unique clothing needs as a result of a service connected disability. Veterans with ALS qualify for this compensation.  There is an important date to remember to request the allowance. 

August 1 – You must establish eligibility by this date. This is also the deadline to submit the Annual Clothing Allowance to the prosthetic representative for payment. Payment are sent out between September 1 and October 31.  The application can be found on the VA website (VA Form 10-8678) 


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 equipment identified below is in no particular order. Every PAL progresses differently but most every PAL will eventually end up needing the same equipment.


This was the first piece of equipment we received. Actually, we received a transport wheelchair. The Big He was getting tired while walking and we had started to plan Bucket List vacations so we knew we would need something portable and lightweight.

The motorized chair came later. That does take some time to get in since you need to be fitted for the chair. You should consider getting into one well ahead of needing it so you can practice maneuvering in it. Trust me your walls, door-frames, furniture and toes will appreciate it.


The ventilator was one of the first major pieces of equipment that we needed that was not readily available. 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. Along with the ventilator, have the VA ALS Team order the cough assist. This is a great piece of equipment that can help, well cough but it is also great to use proactively to help expand your lungs.

Something to keep in mind with these pieces of equipment is that until you are using them day in and day out you need to make sure that you are provided with initial and on-going training and not pushed off to watch a YouTube video. You also want to ensure that the company that is servicing your equipment is one that can provide care as opposed to just delivering supplies. There may be times throughout the course of the disease that you will need to have your ventilator settings modified. This is common and is done to help you continue to fight this disease.


2 thoughts on “ALS-Rules of Engagement

  1. James Dougherty

    Hi Tom.k .
    I’m a PALS and a Navy veteran 1966-1970. I will be 70 years old in a few weeks. My symptoms started in July 1999, but I wasn’t diagnosed until April 2004. I was a tractor-trailer owner-operator operating in the lower 48 and several Canadian Provinces. I knew there was something seriously wrong but I was afraid to go to a Doctor. Instead I continued driving as I experienced spasticity and slurred speech while having many falls, including a broken ankle and two crushed lumbar vertebrae. I fought with the VA for five years to get ALS recognized as a presumptive service-connected disease with no success until the data was so overwhelming that the then head of the VA declared ALS to be a presumptive service-connected disease. I was in locations where Agent Orange was being used. The Coatesville VAMC has been outstanding by providing me with a handicapped van and a power wheel chair and stair lift.
    . I also get treated by the ALS Association. I use a bipap machine when sleeping and my lung function went from 91% in 2004 to 51% at present. I haven’t had the need for a ventilator. I can still use a walker in my home. I’m telling you my story with the wish it might give you and anyone who reads it hope that long-term ALS surviivability is possible. I’m in the 19th year of living with ALS. “I have ALS, it doesn’t have me”.
    God Bless!

    1. Thank you James. Every story we hear about those living with ALS gives us the hope we need. Thank you for fighting the VA for the service connected designation.

Leave a Reply