Another Step in the Mobility Direction

When we bought our house about 3 years ago, one of the aspects I was most looking forward to improving was accessibility in our lives. As Elise grows, her mobility is changing and her needs are more physically challenging for her parents. Lifting and carrying a 30 pound child is much different than moving and lifting a 100 pound teenager. As she gets older and heavier, so do I! I'm not as strong as I used to be and my back has not held up well to years of lifting. I can work on getting stronger, but Elise is not going to get smaller. So, the challenges of both of us aging will always be there. 

Abby showing off

When we moved into our house, we had a stair lift installed immediately. We live in a ranch style house with a walk out basement. We are also fortunate to have an in-ground pool in the backyard. The only way to get to the pool is to go down the stairs. So, to ensure that Elise would have full use of the pool, we installed the lift right away. That lift has been a blessing as we haul her up and down the stairs. Several months later we had our hall bathroom modified to be handicapped accessible with a roll in shower and we also added a ramp to be able to easily get into the front door of our house. For the past couple of years we have been in a bit of a holding pattern as we have tried to determine what is next, and also tried to figure out how to pay for what we know we need.

Getting a lift for our house has been on our list for a little while. Elise is not growing a ton in height, but she has grown some and the leverage that my wife and our helpers used to have when she was smaller has all but gone away. For many months I worked with our insurance companies, our case managers, various therapy providers and several equipment companies to work through the process of buying a lift for our house. Seems like an easy process right? Let me assure you that NOTHING about this entire process was easy.

Laying it out before mounting

Whenever a person is in need of medical equipment, the first step you are required to take is to see what insurance will cover. The way our health system is set up in America, this is our reality in everything related to our health. Even for those that are healthy. We are fortunate to have two health insurances for Elise. We have our primary insurance that we purchase through Kelly's work (how is that cheaper than the insurance through my work that has thousands of employees that are part of the plan?) and Elise has a secondary insurance through Kansas Medicaid. Being totally disabled, she will always qualify for Medicaid. Having those two insurances is a blessing whenever she has a significant medical problem. When we need equipment or supplies however, let's just say it's complicated.

Our primary insurance, Blue Cross Blue Shield of Kansas, does not cover any of the cost of a lift or generally any medical equipment. None of the equipment as seen as a necessity. Kansas Medicaid will pay for equipment, but it is generally the least expensive option. I completely understand that from a purely business standpoint. But, I'm not running a business in my family. We are actually in a "real life" situation. Often times the "least expensive option" is of lesser quality, less able to be modified to work in various situations, etc. As an example of this, when we had a ramp installed in the front of our house, they would not replace the entire decking to match. If we move, we are expected to take the ramp with us to our new house. It is not their problem if the door heights are not the same on the front of the house. They paid for that ramp, we are to take it with us if we leave. Makes sense right? But, I digress.

I widened two doorways

Regarding the lift, the least expensive option was a stand alone portable lift. This type of lift would be another piece of furniture for our house that would move from room to room with Elise. We were insistent that we did not want this option and that it would not work in our house. To prove our point, we borrowed a lift from an equipment exchange company. We pushed the lift up to Elise's bed and the base of the lift was too tall to fit under Elise's bed. So, we borrowed some risers to put Elise's bed on to get it up to a usable height for the lift. Once that was done, the top of her mattress was about 4 feet 6 inches off of the floor. So, in order for a caregiver to change Elise, dress her, etc. they (including me) would need to stand on something to get them higher up. Yet another piece of equipment that would be needed. We used Abby as our test subject with the lift, she actually likes this part of having a sister with such odd needs. We secured Abby in the lift and moved her to the door to get out of the bedroom. The lift had to be forced through the door and then it was too long to turn and actually go down the hallway. So, it was wedged in the doorway and stuck. We got all of this on video. We shared this with the insurance company as justification for buying a ceiling mounted lift. The request was denied immediately.

Fortunately, the medical supply company that we ended up using knew that Medicaid generally pays X amount of money for a lift. He told me it was generally enough to cover the cost of a portable lift, in the range of $7,500. He got Medicaid to commit to paying their portion and we had to determine how to cover the rest if we wanted a ceiling mounted lift. I spent the next two months applying for funds from various charities that support these type of products and working with various people to provide justification and evidence of our need. It was kind of exhausting actually!

Fortunately Elise was gone a bit

In the end, we were left with footing the bill on our own or scrapping the idea. Prior to Elise having surgery in October, we had plans in place to move forward. Surgery, followed by a lengthy hospital stay for complications put us a little more behind than I would have liked. But, long story short, we finished getting the lift installed the beginning of March! While we never like hospital stays, the timing was perfect. Elise was out of the house for a few days and it made installation go really smoothly for those 3 days.

Prior to installing the lift, I decided to widen a couple of doorways anyway. We did not need this for the lift, but it has sure made thing easier. I widened her room doorway to 36" and widened the hallway bathroom doorway to 30 inches. It is much easier to get her in and out of the needed areas through those wider doorways. I will have replacing the trim on my to do list. I'll get to that soon. It also has me considering replacing a couple of other doors in the hallway as well. That is how projects work right?

Another project

Once the lift was installed, I realized that I would have another project on my hands. I have been a bit perplexed about how best to solve it so I still haven't touched it. As you can see from the picture on the right, the lift track goes through the header in the doorway into our hall bathroom and also into Elise's bedroom. I'm probably not going to do anything about Elise's bedroom. But, the hall bathroom is what all of our guest use when they come to our house. So, for "privacy reasons", I feel like I need to put something in that hole. Obviously it needs to be removable so that the lift can get through there when needed.

The rod is in the way

One more project that came out of this installation was the shower curtain rod. It never occurred to me that it would be a problem. As you see from the picture on the left, the lift is stopped just outside of the show. It can't get past the rod. When I reached out to the company we bought it from they said, "people usually just take them down, push the lift into the shower and then put it back up." Yeah, that is a pretty dumb solution. We're not going to do that every time that Elise needs a shower.

Luckily I found a "swing away rod" that is sold for just this purpose. It is supposed to arrive over the weekend. Hopefully I'll be able to say on Sunday that it worked fantastically!

The road to accessibility is bumpy, hard to navigate and full of challenges. Pushing through those challenges, while very exhausting, can be so worth it. There are two main reasons that I think people give up on trying to make their lives more accessible. The first is money. All total, the price of this lift was equivalent to a mid-sized new car. Depending on the situation that a family is in, it can also be opportunity cost. There are many more families with an older parent that need a lift like this than there are families like mine using it for a child. Is it worth the money for only a year or two of usage? That is a difficult decision to make. The second reason I think people give up is time. Making these projects comes to fruition is MONTHS in the making. Hundreds of emails, phone calls, appointments, etc. It is so time consuming! It is hard to devote the kind of time needed when both parents have careers, medical challenges continue on a daily basis, and just life is happening around you. The amount of time that a family like mine puts into medical stuff is something that we could never fully explain. Only those that are drowning in appointments and commitments seem to truly grasp it. If that is not you, consider it a blessing. I wouldn't wish those challenges on anyone.

Honestly, I didn't think we would really have an immediate need for the lift. I viewed this more as a long term project. In my mind, it would get some use now and be really handy down the road. But, after about 2 uses I am convinced we made the right choice and it is a daily part of our routine now! Seeing this is worth the months long journey to get here.