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Renovating your life to live with ALS while endlessly waiting for the VA

Written By | Apr 29, 2018

CHARLOTTE: Over the past two years, the appearance of our neighborhood has changed dramatically. Ranch style houses once  a part of the fabric of the community have yielded to million dollar multi-level homes. In the process, our contribution to the neighborhood renovation has been limited at best.

Certainly, our fellow residents must be delighted that we no longer represent the “Appalachia” contingent of the environment.

We have recently managed to get the car down from the cinder blocks and out of the front yard. The washing machine no longer sits on the front porch. And best of all, for us anyway, is the toilet in the den is no longer being used as a planter. It has, at long last, been repositioned “flush” against the wall in the bathroom.

In other words, we may not live in a mansion, but we are no longer the “Beverly Hillbillies” of the neighborhood.

Still, all is not ideal in the world of ALS renovation.

As conditions of the disease progress, its victims can apply for grants through the Office of Veteran’s Affairs (VA) to make their homes more compatible for living with their disability.

One grant, known as Home Improvements and Structural Alterations (HISA) provides roughly $7,000 to modify a house to aid with things such as wheelchair needs, bathroom and shower facilities and various other home adjustments that are no longer useful in an abnormal world.

The HISA grant was nothing more than a formality, says the VA. Sign a few papers, apply for the funds and they would be available within approximately 30 days.

The other, larger and more extensive grant, requires considerably more effort but it allows homeowners to take advantage of services that make them look like a participant on one of those home improvement television programs.

The catch.

To acquire the larger grant, recipients must comply with VA governmental regulations such as having approved ramps, two means of entrance and exit and at least minimal dimensions in any restored bathroom facilities.

Taking the advice of VA personnel, and considering that we had been told the HISA grant was nothing more than a formality, we began pursuing the bigger project with the idea that we could always return to the HISA money as a simple back-up.

Due to the configuration of our house, the biggerr renovations would have included rebuilding the master bedroom, constructing a larger master bathroom as well as a second smaller bathroom for guests, adding two doorways with ramps for exits and completely rebuilding the deck to a single level with a ramp leading from the back of the house to the driveway.

After approximately six months of blueprints and evaluations, the projects cost was ten to fifteen thousand dollars. Needless to say, more than the grant allowed. Worst of all, it would keep us out of our house for approximately nine  months during construction.

So, after some consideration about the expense combined with the unknown progression of the ALS, we turned down the large grant and went back to HISA hoping to make only the most necessary renovations.

We completed the paperwork for the so-called “easy-peasy” HISA grant in February.

When the reconstruction work began, the changes took considerably longer than expected. However  they were finished within two months, give or take.

It is now almost May, and we have yet to receive notice of the acceptance of the HISA grant or the funds. We personally paid for all the alterations and contacted the powers that be at the VA and HISA at least six times by e-mail and by phone on four other occasions.

Thus far we have received one response informing us to expect a letter from HISA on April 16. We’re still waiting for the letter.

Beautiful but non-functional

In the meantime, the bathroom is complete and looks incredible. In now meets all of my ALS disability needs, except for a few glitches.

The shower does not have hot water. Therefore, though the design is perfect, the shower remains nothing more than a pretty tile sculpture with no practical use, unless you enjoy a brisk shower. The water flow in the toilet is not strong enough to flush properly so that part of the facility is, for all intents, of no use either.

Finally, the locks on the pocket doors to my office and the bathroom only lock from the outside. This reduces the small amount of privacy I request. And we are continuing to wait on the VA.

We are now considering opening the bathroom as museum exhibit to demonstrate how tiling and renovation can alter an existing bathroom. Into something completely new and different, but without function.

Meanwhile, we continue to wait for news from HISA about that fast and simple grant. Or even just a simple response to let us know the status. Alas, when it comes to the VA the slogan is ‘just wait.”

And just for fun, I have also begun re-reading John Milton’s “Paradise Lost.”


About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (

Read more of What in the World and Bob Taylor at Communities Digital News

Read more of Bob’s journeys with ALS and his travels around the world

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Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club ( and his goal is to visit 100 countries or more during his lifetime.