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.

More to come….





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