We have engaged in the process of finding a builder for a specially adapted housing grant and that process is ongoing for over six months now and we recently are back to square one. The builder who we had selected and worked with for the past four months has suddenly and unexpectedly dropped our contract forcing us to revert to the bidding phase requiring three bids to submit to the veterans administration.

Let’s start back at the beginning of this process. The VA offers a house remodel grant that helps veterans to modify their home ensuring that they have sleeping and bathing facilities that can be accessed by the disabled veteran. This grant program is called the specially adapted housing grant and it’s very generous allowing for up to $126,000 of grant money to be used in the home remodel process. While this may seem like a lot of money, it only covers about half of the cost of the modifications we need made to our home. There is a combination of factors including the level of change required to the property as well as living in a very expensive state generally. We initiated the first attempt to find a builder in August of 2024 when I put out a request to the Kitsap builders association requesting bids from local contractors. I had anticipated getting at least three bids from this process but only one company responded at all. Disney homes out of port orchard responded and we set up a meeting to discuss what was required. Our first sit down meeting with the Disney homes representative also included The VA specially adapted housing grant program representative for our area so that he could answer questions and make sure the builder asked the right questions.

The project manager that we met with was named Spencer, and we immediately liked his demeanor and actually listening to our needs and requests for this built. During our first discussion we let him know why we were doing this build related to my ALS condition and he disclosed that his father had died from ALS so he understood both the need and the time sensitive nature of getting this accomplished. At that time we thought this was a God moment where the right person was sent to be in our life at the right time to help us accomplish this project.

It didn’t take long for Spencer and Disney homes to engage on the project and they started with the architect and engineer requirements. They facilitated all of the meetings and discussions required to understand the structural engineering requirements of the project and then had an architect draw up all the plans in preparation for submission to the veterans administration. This process took about two months for the initial round of paperwork to be ready to send off to The VA representative. The first round of documents was sent but had difficulty being received by the VA representative. I believe that the documents sent by Spencer at Disney homes were too large for the inbox of the VA representative. This was the first time that communication broke down and the flow of information and documents was slowed due to technical restrictions. Typically, all discussions for a VA specially adapted housing program go between the builder and the VA representative, but I had a Suspicion that there would be complications. I insisted on being CCed on all communications so that I could monitor the progress and understand where we were at in the process. This request proved invaluable when the 1st disruption of communication came about, requiring me to repackage and resend the documents between the builder and the VA representative. Once the documents were sent and verified to have been received, we started a minimum of 10 days of waiting for the VA representative to review the documents and send back the required changes. The review process took a little over 2 weeks and by this time we near the end of the month of November.

Over the month of December there was not much movement as everyone was out of pocket and the second round of changes for the documentation was now in the hands of Spencer at Disney homes to facilitate updates. Around the middle of January of 2025 we got an e-mail stating that the second round of changes had been sent via e-mail to myself, Stephanie and The VA representative. After a few days of confusion we realized that none of the three people had received those documents and so I began reaching back out to Spencer from Disney homes to see if we had a technical disconnect again. The first round of documents could not be received by the VA because they were too large for their inbox and so I had to make them smaller. Most veterans would not have the software required to make the changes that I made and they most likely would not have been CCed on all communications allowing them to know that there was an issue at all.

We requested a resend of the documents by Disney Holmes but never received a response back. I spent nearly a month of calling, emailing and texting Spencer at Disney homes with no communication returned. It was at this point we knew we had an issue and so I called the Disney homes main office to make sure that Spencer still worked there and to see if I could talk with a manager of some sort. A manager callback was requested and never received. So at this point we were dead in the water, we didn’t know what was happening or why our projects was terminated. It was stated later that the project manager had communicated the withdrawal of the company for this project to the VA representative. I have yet to discuss that with the VA representative to confirm.

We are now back at square one trying to find builders and general contractors who can facilitate this type of home remodel. We started that process by going to the Kitsap home and garden show for 2025 and there we talked to six different companies. I provided each company with a small half page brochure that described the work that we needed to do and provided all of my contact information while also taking their contact information and business cards so that we could call and e-mail them the following week. I created a very detailed e-mail that described the scope of the work to be accomplished as well as providing a link to a shared set of documents on my G drive so that each of the builders can see what Disney homes had prepared. I thought this would be the best way to make sure each builder knew exactly what we needed and wanted and maybe give them a great first step toward generating the plans for their submission to the VA representative to complete our project. we are currently in the interview and information sharing phase where we hope to Answer all the questions that each builder has along with providing details shared with us by the VA on requirements.

In an effort to improve the process and understand the complications that led to our project termination, I sent an e-mail to Spencer at Disney homes as follows:

“This past weekend we went to the Kitsap Home and Garden Show and saw you outside with the Disney homes set up. We chose not to engage with you because we didn’t want to bring a negative light to the work you were doing there. We attended this event to talk with and find other builders who would be able to facilitate our home remodel and found six possible candidates that we will be engaging.

I’m sending you this message to provide an opportunity for feedback before I submit my write up and article to the veteran administration’s ALS process improvement review board. I have recently been added to this group supplying direct information to the veterans administration on the positives and negatives to many of the programs associated with providing service to ALS veterans. Information will also be shared with the Pacific Northwest Paralyzed Veterans of America group as well as the veteran team for I AM ALS.org. 

There is a known problem with many of the programs and services offered by the Veterans administration and they specifically impact the time-sensitive nature of ALS patients. I am one of many ALS veterans who have had difficulties acquiring services and Community Resources to get things done in a timely manner. This is an ongoing and challenging situation that your company can provide insight on.

What I’m asking from you and Disney homes

From our perspective as the veteran in need of service, we were never given a reason or even made aware that our project had been terminated. It was only after a month of Silence that I called the Disney homes main number and talked to an office manager there… that we found out about the status of our project. Also we don’t know what led to making this decision on your company’s part. 

What I’m asking from Disney homes is that you provide information about the process from your perspective. I would like you to take this very seriously and provide detailed information that describes what the challenges were, what the pros and cons of working within the VA framework, and ultimately the decision making factors that you evaluated. The VA cannot improve their process if they don’t know what the problems are from the perspective of those who have to work within the guidelines they set.

I will be creating my report and meeting with VA Representatives in the next few weeks, as well as publishing an article about the process from beginning to end. I will also be leaving it open-ended for a follow-up once we find a new Builder and move toward the actual building phase.

While this is a regrettable situation and I mean no ill will to you or Disney homes, it is in the veteran ALS community’s best interest that I’m sharing this information with the VA process review board and ALS community members.“

The response from Spencer at Disney homes was as follows:

“Thank you for the opportunity to respond to your request and your dedication to improve the process of future VA benefit members.

 Our decision to terminate the project was based on the efforts that were given to what felt like no avail with the VA. Through working with the VA for the first time it felt like we had no support with them. Many missed opportunities to communicate efficiently directly with the VA to help diagnose the root of why our documents were not meeting their standard created a hardship on the company that happened multiple times. With various requests to the VA through phone calls for direction it was described to myself that the documents should be put together to the best of our abilities and will be checked for completeness.

 As you are aware of the difficulty of the timeframe, by the time the documents were returned the project had not moved for a multitude of days. With phone calls at 5pm on multiple occasions it was difficult to track and record everything that was required and not followed up with a coordinating email. I would put this as the most difficult situation if asked how the VA could better assist. The communication needs to be clear on what is required. As a first time participant with the VA program in this instance made participating difficult to succeed.

 The communication as a whole was not a problem. I felt like I had constant access to the VA but the information that was given was not direct or defined. I believe this is from the multiple levels of review, that it is like playing the game of telephone and by the time the end user is hearing of it, the story has changed. Meeting the VA requirements on your project was difficult with the scope of work that was being done. From the builders perspective it seemed like there was a lot of unrequired tasks that did not pertain to the project. The VA has great documents to draft but did not once confirm they were done correctly.

 The required documents needed to be completed to an extent that is seemingly impossible for a remodel. I understand the minimum requirements and the layout of the home needs to be perfectly functional for the veteran but at the same time the work will be inspected multiple times by both the county jurisdiction and the VA.

 The financial contribution from the VA was also very strict for a small local builder. Having spent multiple hours on this project both on site and in office with no obligation from the VA puts a stretch on the builder. Between the delay in payment at the start of the project and the payment structure of the grant broke the project up into gaps that are not a part of traditional building practices. The way we structure a contract is to best perform on our financial obligations for our subcontractors and material suppliers. A new structure from the VA would be incredibly helpful for a smaller company.

 With our work on your project I tried to separate my personal and professional sides. That is why I had asked via phone call to the VA to reach out to you and inform you of our decision to terminate. I apologize for the delay in communication as I am aware of the need for timely action on your behalf. I have spoken with Aaron Logue of Moss and Madder builder. As I am aware that you spoke with him at the Home and remodel expo. I gave him my best description of the project and offered my support. I have known Aaron for a few years now. I am not sure who else you had the opportunity to speak with but all the members of the KBA are excellent choices. I hope you find the right fit for this project that can communicate with the VA professionally and expediently.”

So from this point forward, we will be engaging 6 different companies that we talked to at the Kitsap home and garden show. I’ve created a very detailed e-mail that describes the scope of the work as well as provided all Disney Homes documents for review by the new builders. I’m hoping this gives each builder enough information to decide if they want to be involved as well as understanding the level of detail required to start the project.

My suggestions on how to improve this process for the VA and home builders:

• communication is key – both the builder and myself at times had difficulty understanding where we were at in the process. Whose turn was it to send documents or provide review of documents and what was the time frame associated with those communications. Communications were made via e-mail and in some instances those were communicated to all participants and in other cases those were direct person to person emails instead of to the whole team. To prevent this from being an issue I recommend that all emails require The VA representative, the builder and team builder members as well as the veteran and any other person they designate like a spouse to be included on all communications.
• Submission of documents –  documents were emailed back and forth between the VA and the builder and this created a significant technological barrier. Specifically many of the forms completed by the builder were too large for the VA e-mail system to accept. I highly recommend that the VA provide a solution that allows builders to upload documents to an online repository. In addition, The VA representative stated that they could not receive or accept for submission documents that were posted to a sharing solution like Google Gdrive. I further recommend that Procedures for acquiring, storing, reviewing and sending documents to and from the VAB established. There is no reason in 2025 why digital communications cannot be facilitated between builders and the VA.
• Project management – this building process and the documents required as well as the participants involved require a project management solution. It is highly recommended that the VA establish a project management cloud based solution that allows an end to end project management approach to the specifically adapted housing grant program. There needs to be a single secure location where all documents are collected stored and reviewed as well as a list of all participants that allow communication directly in the project management solution so that a single login allows for access to everything related to this veteran’s specially adapted housing grant execution.
• SAH Grant Submission Documentation – one of the significant shortfalls identified by the builder was a lack of documentation and available resources to understand and comply with the complex submission process. Two recommendations to offset this issue include: a complete website that describes and trains builders and veterans on the process of completing all paperwork and submission to the VA. This should not be a series of wall of text presentations, instead there should be video content that describes in detail every single input  on every single form they narrator describing all possibilities while showing the document being discussed. The second recommendation for to address this issue is to have a call number that builders can use to get assistance when completing SAH grant related paperwork.

As we are about to start Round 2 of this program, it is my goal to ensure that the builder and VA representative clearly and effectively communicate keeping myself as the veteran fully up to date on all proceedings. I am planning to utilize my own project management process to force the builders and the VA representative into a state of accountability that I have direct access to as well as providing information and access to other parties. I anticipate the VA representative will not want to participate in this formal process so I will take on the role of documenting all interactions including phone calls and emails into my project management process.

It is possible that some of the recommendations above exist, however if they do, we do not know about them.

Why is this so important and why am I taking such an aggressive involvement in what should be a well-defined VA program?

Recently I have been introduced to and become part of a review process that allows ALS patients to directly interface with and provide input to the veteran administrations ALS care decision makers. This opportunity allows me to provide information to the people who create and define the processes used throughout the veterans administration for ALS patients. With this newfound access and direct input, I have begun supplying information that details my experiences as well as those I’ve heard about from other ALS community members. In several discussions with the VA and with other groups that I volunteer with there is a known issue of difficulty utilizing and working within the VA presented programs to facilitate the needs of ALS patients.

The second big reason for taking such an aggressive involvement with this program, is the nature of ALS and it’s rapid disabling effects. At the time we started this project it wasn’t very much of an issue for me to be able to go upstairs to the shower however over the past six months my mobility has significantly decreased. Even if this project goes smoothly from here on out I anticipate reaching a point where I can no longer make it up the stairs. At that time I will have only two options that I can think of, the first option is a popup shower that the VA provided. This 4 by 4 shower stall can be set up in the garage or maybe even in the kitchen of our home with hot water piped from a sink. We haven’t used this type of shower yet but it sounds like a mess waiting to happen and will significantly decrease the number of times that can take a shower in a week. The second option would be to go to a facility like the YMCA and see if I can use one of their ADA compliant family bathroom stalls. In both cases the situation makes it really difficult for me to take showers and will require personal  help and planning. These options would be much less helpful then having the ADA compliant bathroom completed on the ground floor of our home.