September 12, 2024
Four years ago, when Gus was born, one of the first disability service programs we were introduced to was the Developmental Disabilities Service Division (DDSD) through the Oklahoma Health Care Authority. The program serves individuals three years of age and older who have intellectual disabilities and related conditions who "otherwise require placement in an intermediate care facility for individuals with intellectual disabilities." Eligible program members are allotted funds to be used for waiver-approved services that allow them to remain integrated into the community. The only problem? "The current estimated waitlist time is fourteen years."
So we did what anyone with a critically ill child requiring routine hospitalization would do... and didn't apply for services... "What's the point?" Then, after two years, Gus's medical conditions became more stable, his care more routine. We began asking "What if?" and applied. In the meantime—by golly!— the state of Oklahoma received grant funding to fast-track the waitlist, and as they organized our wait went from fourteen years, to twelve, to seven, and then, two years after submitting paperwork, we were notified his cohort was up to bat.
This spring after jumping through the hoops we were assigned a case manager and received our approval letter; benefits could be used for things like assistive technology, family counseling, an agency companion, respite care, medicine, medical equipment, therapy, nutritional services... and van conversion. HUZZAH! Wonderful! AMAZING! ...... BUT.
In this life there's always a but... or two... or three. Big ones, little ones... but mostly big ones.
Since Gus's diagnoses are so rare, medical needs are so high, our family size so large, our income comparatively low, and because he is a minor Gus qualifies for SoonerCare, Oklahoma's child Medicare program. SoonerCare probably provides 95% of the services also approved under the DDSD Program. For kids of his status the DDSD waiver program is expected to be used for supplemental assistance; things his SoonerCare insurance will not approve. Think of it like secondary insurance.
SoonerCare does not cover van conversion. In theory his DDSD funds should—by the agency's own admission—be able to be used for the conversion of any pre-approved vehicle. BUT you might be surprised to learn that living with quadriplegia and having no reasonable expectation of ever standing or walking doesn't qualify you to use your funds for this purpose. Admittedly, I am fatigued in my pursuit of this. I could say a great deal more, but as I sit here tonight, we have one letter of medical necessity in hand and are working on a second. Sadly, even if we are approved from a medical standpoint we could still be denied for a myriad of other reasons.
In happier news we were contacted by a pastor at church. They received a large anonymous donation on our behalf and are holding it for us in an account. I have adjusted the fundraising goals accordingly. Whoever you are, wherever you are, on behalf of Augustus and our whole family—now a little larger with miss Nora Lou—Thank you.
Sincerely,
Scott, Nichole, all the "Bigs," GusGus, and baby Nora.
March 9, 2024
Thursday afternoon after a visit with Nephrology we headed over to Newby-Vance Mobility in Oklahoma City to meet with one of the sales representatives we've been talking to over the last year. He was able to clarify financing options, show us a couple of vehicles, explain a few more differences, and show us how they operate.
After conversations with other disability families and reading reviews online we were surprised that fold up ramps took up less space than we thought... and in the event of breakdown would still be more functional and slightly safer than in-floor ramps; the ramp "lip" on fold out models is just a bit higher than in floor models since it doesn't need to fit in the floor. We also learned that the back bench seats of side entry vehicles have fold down foot rests... kind of like the prayer kneelers at a Catholic church. Since the floor is lowered, this gives able bodied riders a place to comfortably rest their feet. It's the small things!
There are a few other options we're getting clarification on. Namely the possibility of a jump seat next to where Gus would be tied down in his wheelchair. While this is not hugely important it would allow us to go places in one vehicle as a whole family. As it stands three of the kids can fit across the back bench, Gus could be in tie-downs, one child can ride in the front passenger seat, and we could have one adult driver. With an extra fold-out jump seat for occasions when the whole family is altogether, we could still occasionally all travel in one vehicle; church, zoo or aquarium trips, etc. If not, we've settled on the idea that we'll just need to take two cars wherever we go.
We would also like to say a special thanks to everyone who has donated to the campaign so far; Zoe Pierce—one of our lovely "retired" nurses, the Nix family, Tim & Suzanne Fink, Uncle Nathan, Allison Freswick and Family, Rachel Close, Jadie Peterson and Family, Grandma Shelley, and one anonymous $3k (wowza!) donor. Every little bit of assistance makes our ability to get Gus around a little less complex. It saves us and him—especially when he's not feeling well—time, stress, and labor. It was such an amazing relief and absolutely freeing to just wheel him right up into a van without the fuss of three or four back and forth trips to load all the equipment that travels with us on a daily basis; another post on that coming in the future!
Again, thanks for stopping by! If you are considering donating and have genuine questions about anything, please feel free to ask. We won't turn away from anyone seeking understanding and inquiring with genuine curiosity.
Much love,
Scott, Nichole, all the kiddos, and especially GusGus!
January 30, 2024
Have you ever been looking at something online, become interested, and a shot a glance down in the right hand corner where the price should be only for it to say something like "Call for more information" or "Call for pricing"? The cringe you felt in that moment probably gives you a pretty good idea of what we've been doing the last few months as we started moving towards trying to find an accessible vehicle.
The sticker shock--and WILDLY--variable pricing of disability vehicles is nothing less than blindsiding. Really... "Special Needs" anything is astonishing, but nothing is as jolting as finding out a vehicle with 100,000 miles STARTS near $30,000... if you're lucky. Brand new? A laughable $75K-$100K. You might be able to buy privately with fewer miles for a little less.. if the seller is lawful. Grant information is scant and what is found leaves you questioning whether or not it's legitimate or the hassle is worth it. Mobility specific loan institutions typically don't finance anything with over 100k miles and insurance covers $0. We'll have a little trade in value with our current vehicle and can afford a small loan, but the prospect of potentially needing to pay much MUCH more has been daunting.
So why on earth do disability vehicles cost so much? Here are some of the highlights...
Lowered Floor - Structural Engineering: Door heights are increased at the side or rear entry, by lowering the entire floor of the vehicle. Typically, the lowered floor is completed just forward of the 3rd bench seat and carried to the front firewall just forward of the driver and passenger seat. Both driver and passenger seats are then remounted on removable bases to bring these seats back to the original height for seat belt and airbag safety. Then, AC and brake lines will be rerouted, the exhaust system reworked, fuel lines rerouted to a remounted fuel tank with the addition of a tank filler neck, and a new suspension adapted for the new riding height.
Electrical Engineering Rework: The main electrical systems, BCM (body control modules) and CAN (control area network) systems, need to be rerun through a wiring harness system running from the front of to the back of the vehicle to travel up each air bag system. Things like interior lights, brake lights, and many other features will need to be extended in the wiring system.
Power Ramps - In Floor & Fold Out: The choice between power in floor ramps or power fold out ramps also determines why wheelchair van conversions are so expensive. Fold out ramps are simpler and cost less, but both manual and power will require ramp motors and modules to communicate the opening and closing process. In-floor ramp designs need a ramp carriage, and power fold out ramps attach to the top of the floor. Both offer fast operation, but each have major factors on why wheelchair vans are so expensive.
Auto Kneeling Rear Suspensions: Ramp lengths and angles are important in the design of a conversion. Too long and it will be difficult to navigate around obstacles. Too steep and wheelchair users could tip over when going in and out. The Auto Kneeling System lowers the passenger rear side of the vehicle so ramp angles are reduced to nine degrees. It's function is communicated through modules identifying the door and ramp positions adding a level of complexity.
This is ONE reason why we need help. The costs are outside of our ability to set a realistic budget for our family. If we can find a reliable accessible vehicle for $20K--Great!-- but in reality it is likely going to be much more.
