During physical therapy this past Tuesday, Ella's PT (Lynda) told us that it's time to officially start the process of getting Ella a stander and power wheelchair.
We were hoping that her AFOs and knee immobilizers would help her enough to spend a good amount of time weight bearing, but unfortunately, she can only stand (with assistance) for a few minutes at a time before her torso starts weakening and she can't stay upright.
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| Ella standing very well while wearing her AFOs and knee immobilizers. |
Lynda said she needs to be standing 2-3 hours a day to help her bone growth and respiratory health. So she'll need a "stander", which is basically a large piece of equipment that she straps into in the standing position so she can bear weight without having to worry about controlling her legs, waist, trunk muscles, etc.
As long as she will be evaluated for a stander, we might as well start the process of getting her the power wheelchair, since that takes quite a while (we've been told it can be as long as 10 months!).
When Ella first started PT with Early Intervention, Lynda had told us that getting any kind assistive technology (AT) equipment is a major pain. But I kept thinking that our insurance is pretty good and they told me that as long as Dr. Murphy (Ella's pediatrician) writes a referral/prescription for a device, they'll cover 100%. Excellent! So we'll tell Dr. Murphy that we need a stander and power wheelchair, she'll write a little prescription, and we'll have them in 3-5 business days!
Hmmmmm, not so much. Go figure :)
I've been on the phone with the insurance company, our medical "group", our pediatrician's office, different AT vendors, and different mobility clinics almost constantly since Tuesday.
Luckily everyone has been incredibly helpful and supportive, it's just been a very time consuming process! And Ella hasn't even been to a mobility clinic for an initial evaluation yet!
Basically here's how the process will work:
1. Ella needs a prescription from her pediatrician to go to a mobility clinic.
2. We fill out paperwork for the clinic, send it to them with the prescription and once the clinic receives it, they'll call us to set up an initial evaluation (some clinics are currently scheduling 2 months out).
3. Ella is evaluated by the equipment vendor's therapists, who specialize in such equipment. She's measured and we discuss her current needs as well as needs she will have in the future. Based on the evaluation, they will recommend a specific stander and power chair. Keep in mind, there's not just one type of chair and stander to choose from. They all have different options and features (and no chair or stander has everything, so we have to prioritize)... do we want it to tilt back? Have the chair go to the floor? Have the chair elevate higher? Front-wheel or rear-wheel drive? Joystick or button (or other) controls? Room for other equipment that she may need down the road? What kind of seat? And the list goes on, and on, and on.
4. Once the specialists make their recommendation based on the evaluation, we can either go with it and submit the recommendation to Dr. Murphy that day (see #5), or request to let Ella try a demo first (that's right, they don't have any equipment for her to try while there). If we want a demo, we need to make another appointment to come back (once they have acquired whatever product we want to try).
5. When we've decided on the wheelchair and stander, the therapists will write a very detailed recommendation to Dr. Murphy of what she needs and why. Every single feature of each piece of equipment has to be justified as being "medically necessary" with an explanation. For example, she will need the wheelchair to have a tilt option, because as she grows, her spine will not be able to support herself sitting for long stretches of time, so the chair needs to tilt backwards (into more of a lying position) to help prolong the development of scoliosis. Every single feature must have a medically necessary explanation.
6. Once Dr. Murphy gets the recommendation, she will write a referral for each piece of equipment and submit it to our insurance "group". She has already told us that she will support whatever the therapists recommend. We love her.
7. HOPEFULLY, the group will approve the recommendation. If so, it goes to the insurance company and they will cover it 100%. If the group denies it, we can appeal and go back and forth until we come to an agreement on what is "medically necessary". This process of getting approval can take up to 4 weeks.
8. Once we have official approval from the insurance company, Ella will go back to the mobility clinic to order the equipment and have molds made of her body so that the chair can be custom made for her.
9. We wait 6 to 8 months for the company to make her wheelchair. It shouldn't take as long for the stander.
10. Once the wheelchair is complete, Ella goes back to the mobility clinic to try it out. The therapists check EVERYTHING to make sure it's a proper fit and function for her. They teach her how to operate it (not sure if it's at the same appointment, or if we come back for the education part).
11. Assuming no tweaking needs to be done, we set up a time for them to bring Ella's new equipment to our house (assuming our car is not yet modified).
12. Ella is ready to take on the world!!
Phew! Not exactly seeing a wheelchair in a brochure and saying, "We'll take that one!"
In the meantime, we're exploring some other options to help Ella be a little more independent while we wait for the power chair (we'll write more on that later).
I must say, we've had a really rough few days last weekend and early this week. The reality is really starting to sink in and things feel very different now.
But being SO busy making calls, researching, making more calls and basically trying to get everything into position to start this process has helped tremendously! I've been able to get my mind off of the emotionally draining part and focus my energy on really doing things to help our Squishy :)
