I posted this picture on Facebook a week ago as Jacob was trying out his own zipline for the first time.
The photo of Jacob in his ceiling lift track system generated excitement, curiosity, and questions. I thought it would be worth posting about our process to receive the lift and how it is working out so far.
In July of last year, I went down to Accessible Systems to talk to them about possible lifts transporting Jacob from room to room, so we wouldn't have to lift him for every transfer we do. Nurse Gemma's pregnancy was the driver behind us starting looking. We knew she wouldn't be able to carry Jacob throughout her pregnancy, and we were hoping to find a solution for her.
As I was trying out the different ceiling lifts in the show room, I remember feeling a little bit sad. It was time to realize that our house had to be modified to a larger extent than our bathroom modifications and stair lift for us to take care of Jacob. No matter how many ceiling lifts you look at, they are not pretty. But as Gemma's pregnancy progressed, and I was doing all lifts and couldn't leave the house for more than short periods of time, I knew the time had come for us to find a solution for Jacob.
It was a long process to get the lift system approved by Medicaid funds through the CES (Children's Extensive Support) waiver. We were changing case managers in the middle of the process, which delayed the project with months. No family had ever requested a lift system in our area, so our case manager was at loss if this should be funded or not. I honestly don't know how many letters of medical necessity Jacob's doctors, therapists and nursing agency supplied. We were told we had to provide three different bids, and for the longest time we only could find one provider in Colorado who could provide a viable solution.
After a dragged out process, Jacob's ceiling lift got fully approved on Jacob's 8th birthday! Best birthday present ever.
The vendor who won the bid turned out to not be a great supplier for us. They wanted to install the ceiling lift track system by opening up our roof, which we were not comfortable with. We were back at square one. Luckily, our case manager was committed to get this approved, so she took it back to the top of Medicaid, and we could move forward with a more expensive vendor. Of course all of this happened in the middle of Jacob being in the PICU with adrenaline shock. The least thing you want to have to do from the hospital is to sort out contractors and dealing with Medicaid.
When we finally got Accessible Systems on board, the actual install happened in 1,5 days! Jacob spent the two days down in the basement, and could then move up in his room again.
It is extremely easy to operate the lift track system. It runs very smooth from Jacob's room to his bathroom and straight to his stair lift to go downstairs or from downstairs up again. There is no need for manual lifts anymore. We're all figuring out how to best position Jacob in his sling and little tricks, but we are all giving it thumbs up. We got the lift system mainly for our backs, but reality is that Jacob is doing so much better when we use the lift instead of carrying him around. Jacob is getting too tall for Gemma and myself, and it is really hard to keep his airway safe and making sure we never break a bone as we're carrying him around. I am also amazed how quickly we can get him in and out of the sling.
The absolute best part is that Jacob loves being in his own zipline. Sarah loves to take Jacob for a ride just for fun!
If you're considering a ceiling lift track system, let me know. We definitely learned a lot about working with Jacob's CES waiver program and what vendors we can recommend for future home modifications. When the time comes to modify our downstairs, we're going to be in a better position with the lessons learned from this project.
Until next time! Thanks, Maria.