“Adaptive Housing” Chapter 32

Whether you have ALS or another diagnosis with ADA requirements, adaptations to your home are inevitable.

When I was first diagnosed, I managed just fine in our original 1977 tiny bathroom. Over the years Laura and I had talked about renovating our closet and bathroom, but it was never a priority.

There was plenty of room for one person, but for two, and then eventually the ADA equipment I needed, the bathroom was impossibly small. When I first required help with showering and toileting, the added equipment made the space downright dangerous.

Thankfully, Veterans Affairs (VA) offers a Specially AdaptedHousing (mmmSAH) grant to Service members and Veterans with certain severe service-connected disabilities. The grants assist with building, remodeling, or purchasing an adapted home.

For example, many veterans use the grant to make modifications for a wheelchair accessible home. These funds often make independent living possible when it otherwise wouldn't be.

We were told to start the SAH process immediately after diagnosis, but I was capable then and we did not yet understand what we would need as my diagnosis progressed. We started the paperwork later than we should have, and now that the renovations are really necessary, we are still waiting for them to be fully completed. Tip: get help and get it done BEFORE it’s really needed.

Before the Army, I worked for my dad who was a general contractor and we worked on lots of bathrooms. From the first visit to the home to the end of the project, the bathroom would take about a month. However, for the customer, the actual work required no more than two weeks in their home. All the supplies needed were ordered before we started the actual work. Once in the home, we were able to get everything accomplished at one time. All good contractors have several jobs in different phases so they continue to get paid and have the electrician, plumber, and others rotate in as needed. This is all a part of the planning process.

Needless to say, I am very familiar with the process. This was 35 years ago and things have changed, but…. The VA process for our bathroom is stupid and had we known, we would have started before we moved into the house years ago.

We first started the paperwork with the VA in order to get the SAH grant approved, find the contractor, develop the project plans, and get the funding secured.

Two days before construction was slated to begin, Laura and Dominique moved all the bedroom furniture into our dining room so I would have a place to sleep.

We finally broke ground on 2 March 2023. The contractor informed us it would take 3 to 4 weeks. Assuming he had already ordered all the supplies, I thought that was a bit long based on my past experiences. I also assumed that for the price, we were going to get professionals. I looked forward to sitting back and enjoying our new bathroom and closet within the month.

After the first day of deconstruction, we found a large pile of material on our bedroom floor because the dumpster hadn't been ordered yet. The next day the bin arrived and the material was cleared from the bedroom. After day one it was apparent that we were not going to be sitting back and watching. Good thing Dr. Laura had her minor in general contracting because it was going to be needed.

At the end of week one, most of the deconstruction was done. Of course this would have been completed on day two for my dad back in the day.

Week two brought prep work and some plumbing and electrical tasks before the inspectors would come to certify the work.

Then came week three... And nothing else. The primary contractor had to take emergency leave and left. Even though he'd left, the inspectors could have still come certify, but due to failed communication, it did not happen.

Week four, and guess what happened. We were only partially approved by the inspectors because of mistakes on the paperwork. You can’t make this up! They had the wrong address.

Over the next three weeks, with a lot of guidance from Dr. Laura, the bathroom and closet really started to take shape. Seven weeks at this point. Five more than my dad and I ever took.

Week eight and we can finally move back into the room. In total it’s been five months - four more then any project ever took from start to finish 35 years ago. But even though all of this, we are blessed it is completed and it looks great. Since I can no longer stand on my own, we did not install the grab bars.

We further added a wheelchair chair lift in the garage, a ramp on the door, and replaced thresholds to make them wider. My family flattened walkways around the yard and built a ramp to the garden as well.

I have been to lots of estate sales and saw many ADA adaptations, but I never thought of how invasive it would be to add adaptations in my own home. I'd simply walked passed them.

In the end, the modifications are needed and make our lives a lot easier around the home. We are blessed to have the opportunity to get the modifications and are grateful for them. It makes living with ALS a bit less hard for our whole family.

I pray you never need the adaptations, but if you do, go back and read chapter 26 “The 6 P’s." Hopefully our lessons learned make your own story a bit easier.

Love and blessings