We're FINALLY ready to show off Max's amazing new powerchair!
The Permobil K450 is not the chair we thought Max was getting...it's even better! Here's how it happened.
Summer 2015: Max's 2nd birthday. We reached out to friends and family to help us get Max a power wheelchair which would enable him to drive himself. At the time, we had completely spec'ed out an order for a Permobil M300 (midwheel drive). We thought the paperwork was all submitted, but to our great surprise, it turned out we still needed a few more signatures before applying to insurance. One of those signatures was from Max's physical medicine doctor, who surprised us further when she said that she wasn't ready to sign off on it yet. She had two concerns: (1) that insurance would deny because Max was too young to safely operate a powerchair and (2) that Max would be better off with a different model than the one we were applying for.
Disappointed, we set about gathering more evidence to respond to issue #1. We had already done several trials where therapists came to our home with a special motorized platform that Max could "drive" while secured in his custom seat. It took a lot of coordination to schedule these appointments, and Max didn't really have a way to practice beforehand. We found that the video clips from these trials might be less than convincing to someone worried about safety. Furthermore, it takes a lot of learning to find a control method that works. We were worried that Max might be unfairly penalized for poor performance due to controls that weren't well-suited to his abilities (e.g. joysticks, whereas Max does better with a switch) or age-level (imagine a single switch with a complex timing synchronization requirement, like "when the arrow on the screen points right, click the switch to go right").
We set about trying to build something that would let Max practice at home. A month later, we had a prototype for controlling a power wheelchair: two switches to go three directions (right to go right, left to go left, both at the same time to go forward).
Summer 2015: Max's 2nd birthday. We reached out to friends and family to help us get Max a power wheelchair which would enable him to drive himself. At the time, we had completely spec'ed out an order for a Permobil M300 (midwheel drive). We thought the paperwork was all submitted, but to our great surprise, it turned out we still needed a few more signatures before applying to insurance. One of those signatures was from Max's physical medicine doctor, who surprised us further when she said that she wasn't ready to sign off on it yet. She had two concerns: (1) that insurance would deny because Max was too young to safely operate a powerchair and (2) that Max would be better off with a different model than the one we were applying for.
Disappointed, we set about gathering more evidence to respond to issue #1. We had already done several trials where therapists came to our home with a special motorized platform that Max could "drive" while secured in his custom seat. It took a lot of coordination to schedule these appointments, and Max didn't really have a way to practice beforehand. We found that the video clips from these trials might be less than convincing to someone worried about safety. Furthermore, it takes a lot of learning to find a control method that works. We were worried that Max might be unfairly penalized for poor performance due to controls that weren't well-suited to his abilities (e.g. joysticks, whereas Max does better with a switch) or age-level (imagine a single switch with a complex timing synchronization requirement, like "when the arrow on the screen points right, click the switch to go right").
We set about trying to build something that would let Max practice at home. A month later, we had a prototype for controlling a power wheelchair: two switches to go three directions (right to go right, left to go left, both at the same time to go forward).
Just as we started working on an idea for adding motors to the indoor base of Max's adaptive seat, we were contacted by Lollipop Kids Foundation with some amazing news: they had a power wheelchair in their equipment closet (a Permobil C300) which would be perfect for Max!* This began a few more months of investment: replacing batteries, experimenting with various controls and head supports (some borrowed, some purchased out-of-pocket), getting the wheelchair properly adjusted just right for Max, and getting Max accommodated to using it. By the beginning of 2016, we actually had Max driving himself around our first floor in that powerchair.*
Max's physical medicine doctor was very pleased with the evidence we had generated for Max being able to safely operate a power wheelchair. But she urged us to take a look at a different model, the Permobil K450, because its unique design allowed the chair to lower all the way to the floor, and she felt this would be best for him developmentally. At first, we were skeptical. To support this lowering-to-floor feature, the K450 is a rear-wheel drive, which makes it harder to anticipate turns properly and challenging to get in and out of tight spots. Wasn't Max being able to drive himself easily more important that being able to lower himself to the floor?
We started asking around the SMA community. At first, it seemed that very few kids with a diagnosis of SMA type 1 were being recommended to get a Permobil K450. This increased our skepticism. Finally we found one family whose daughter had a K450. Their glowing review of the chair really helped to change our viewpoint. We decided to see for ourselves and scheduled the equipment company bring the chair out to our home to try it in various positions.
We started asking around the SMA community. At first, it seemed that very few kids with a diagnosis of SMA type 1 were being recommended to get a Permobil K450. This increased our skepticism. Finally we found one family whose daughter had a K450. Their glowing review of the chair really helped to change our viewpoint. We decided to see for ourselves and scheduled the equipment company bring the chair out to our home to try it in various positions.
Trilogy and CoughAssist, mounted
While the K450 was 2" wider than the C300, it still fit in our van the way Max's stroller did. However, there was no doubt that we would need to put a second door into Max's room (something we had already talked about) to get the chair in and out. Also, the handrail on the back of the K450 appeared to be an ideal mounting point for Max's many machines (something that had been a real challenge with the C300 and would not be any different with the M300). We decided to go for it. And so we spent the rest of spring and summer of redoing paperwork, sending emails, waiting, garnering more doctors' signatures, and even more waiting...
On September 15, we got the amazing news (via a letter from our health insurance) that Max's powerchair had been pre-authorized for purchase. The order was placed, and delivery was scheduled for mid-October.
The chair was delivered pre-adjusted for Max. However, there were still plenty of tweaks that needed to be made. The biggest task by far, though, was fitting all of Max's machines onto the chair. Amazingly, it only took one late night -- plus a few therapist and technician followups to "tighten up the screws" -- to get all the machines mounted onto the chair in a way that was fit for travel and convenient for caregivers. (This was no doubt due to the many lessons learned and accessories acquired for Max's Zippie Voyage stroller, his Permobil C300, and his "dune buggy" beach wagon!)
It's hard to put into words how amazing our first outing with the Permobil K450 was. We took Max to the birthday party of one of his friends. At previous birthday parties, we tended to pick a spot where Max could see all the action and settle there (because his stroller was heavy to push around and also kept him high off the ground). This time was different. With just a tap of the joystick, we were able to move Max right up into the action. It felt so empowering to us as parents to be able to lower him down to the same level as his friends. He sat next to the kids picnic table while they all ate brunch, and then he rode over to the sandbox where some other friends were playing.
At the end of the party, the kids ran to play in a pile of leaves. "Do you want to play in the leaves?" we asked Max. When he indicated yes excitedly, we drove his K450 straight for the leaf pile. One of the kids threw some leaves at Max, and he loved it, so then all his friends started throwing leaves up in the air around Max, while he just laughed and laughed. When we finally had to go, Max cried; he didn't want the fun to end. Later that day, he couldn't stop talking about playing with his friends in the leaves and his new chair.
Thank you so much to everyone who pitched in to help us make this possible to Max. Major thanks to Max's therapists who made numerous visits to ensure that everything was the way it needed to be. And a heartfelt thanks to the team at NuMotion, whose dedication to doing everything necessary to get Max his chair (and patience with our weekly email ping, much like a parent listening to their child ask over and over: "Are we there yet?") all came out justified when the chair was approved by our insurance on the first try.
To other families of children with special needs working their way through the arduous process of ordering and getting insurance approval for a power wheelchair: we hope our story is helpful. If you have any questions, please don't hesitate to contact us through this website. We especially want caregivers of trached and vented kids with degenerative neuromuscular diagnoses to know that the K450 can be an ideal platform for "on the go" living when your child's life includes an array of medical machines.
But don't take our word for it. Without further ado, here is the final product: Max's Permobil K450, "fully loaded."
On September 15, we got the amazing news (via a letter from our health insurance) that Max's powerchair had been pre-authorized for purchase. The order was placed, and delivery was scheduled for mid-October.
The chair was delivered pre-adjusted for Max. However, there were still plenty of tweaks that needed to be made. The biggest task by far, though, was fitting all of Max's machines onto the chair. Amazingly, it only took one late night -- plus a few therapist and technician followups to "tighten up the screws" -- to get all the machines mounted onto the chair in a way that was fit for travel and convenient for caregivers. (This was no doubt due to the many lessons learned and accessories acquired for Max's Zippie Voyage stroller, his Permobil C300, and his "dune buggy" beach wagon!)
It's hard to put into words how amazing our first outing with the Permobil K450 was. We took Max to the birthday party of one of his friends. At previous birthday parties, we tended to pick a spot where Max could see all the action and settle there (because his stroller was heavy to push around and also kept him high off the ground). This time was different. With just a tap of the joystick, we were able to move Max right up into the action. It felt so empowering to us as parents to be able to lower him down to the same level as his friends. He sat next to the kids picnic table while they all ate brunch, and then he rode over to the sandbox where some other friends were playing.
At the end of the party, the kids ran to play in a pile of leaves. "Do you want to play in the leaves?" we asked Max. When he indicated yes excitedly, we drove his K450 straight for the leaf pile. One of the kids threw some leaves at Max, and he loved it, so then all his friends started throwing leaves up in the air around Max, while he just laughed and laughed. When we finally had to go, Max cried; he didn't want the fun to end. Later that day, he couldn't stop talking about playing with his friends in the leaves and his new chair.
Thank you so much to everyone who pitched in to help us make this possible to Max. Major thanks to Max's therapists who made numerous visits to ensure that everything was the way it needed to be. And a heartfelt thanks to the team at NuMotion, whose dedication to doing everything necessary to get Max his chair (and patience with our weekly email ping, much like a parent listening to their child ask over and over: "Are we there yet?") all came out justified when the chair was approved by our insurance on the first try.
To other families of children with special needs working their way through the arduous process of ordering and getting insurance approval for a power wheelchair: we hope our story is helpful. If you have any questions, please don't hesitate to contact us through this website. We especially want caregivers of trached and vented kids with degenerative neuromuscular diagnoses to know that the K450 can be an ideal platform for "on the go" living when your child's life includes an array of medical machines.
But don't take our word for it. Without further ado, here is the final product: Max's Permobil K450, "fully loaded."
Max's Permobil K450...fully loaded!
Coming in 2017: Max driving his powerchair himself!
Bonus: we got the K450 just in time to incorporate it (and its movable tray) into Max's Halloween costume. Presenting...the Amazing Max-stro!
Bonus: we got the K450 just in time to incorporate it (and its movable tray) into Max's Halloween costume. Presenting...the Amazing Max-stro!
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