The braces we are waiting for ... 3 months and counting. Ridiculous!
For the past 3+ months, I have been trying to get Hannah the equipment we need to get her stronger and give her a better quality of life.
After Dr. Raja commented that because Hannah does not have any spasticity, that we can work with her mixed tone issues and work to strengthen her muscles, I decided that we have waited way too long and made this a priority. I let it go by the wayside because we were so busy with Rare Disease Day events, but I need to get her what she needs.
It has come to the point that I wish we just had the money to pay for it outright instead of having to deal with medical equipment companies, insurance companies, and medicaid. Ironically, the problem we are having has less to do with Cigna and medicaid directly by getting the appropriate documentation to get things ordered.
Hell, I just found out today that Hannah’s DAFO braces weren’t even preauthorized by our insurance company yet! She was casted back on 12/9/10! So friggin’ frustrated! Also, the stander that we were waiting on and practicing with the trial at her physical therapist was NEVER preauthorized by our insurance company either. YOU CAN’T FRIGGIN’ PLACE AN ORDER UNTIL THE AUTHORIZATION IS MADE!
So the medical supply company has been sitting on their butts for THREE months without doing a dang thing! Yes, I am extremely angry. HUGELY angry.
Our medicaid case manager, who has been incredibly helpful, as well as our Cigna case manager were very specific in what they needed in order to get things moved. I’m disappointed because I learned not everything will be covered, as we got two denials. But I am pissed off that no one even started the process on this stuff.
Hannah doesn’t have months to figure this stuff out again. She needs this equipment NOW!
So I ask to my special needs friends out there — if you have any of this equipment or know of anyone who has any of these and would be willing to part with them, I would gladly pay for shipping! The braces are custom, so those I will have to fight for to make them move ASAP.
Medium Rifton Blue Wave Bath Seat or something similar
Rifton 14" Toddler Chair (need padding and desk)
Soft-Touch™ Sitter for restaurants and the dining table
CARES Child Aviation Restraint
Otto Bock Kimba Spring Pediatric Wheelchair Stroller (or something similar that provides back support)
I’ve been thinking about this post for a while. I had a bunch of thoughts and will probably miss some point but I’ll try to comment again.
Instead of the harness for the airplane, have you thought about a higher weight car seat (such as the Sunshine Kids Radian 80 to be specific). It is airplane approved, collapses small (relatively) for storage, and would give Hannah more support in the seat. In the 80, she could still be rear facing (if she is under 48 lbs, which from pictures I assume she is, my tall for his age 4.5 year old is just outgrowing the rear facing), which would recline her some and she would be facing you which would make it easier in some ways to play with her as she can look at your face. It would also then work as the car seat when you get wherever. I know it isn’t the approve use for it, but I almost think you could use the Radian car seat as the 5 point harness for chairs (using the LATCH straps and the rear tether to attach it to a chair with a high back… like some wooden kitchen chairs). Also, could you ask for this as part of your Make-A-Wish, so Hannah can safety GET to Disney? Or ask for the stroller as part of the Wish so she can get around Disney better?
As far as the other equipment, is there a United Cerebral Palsy Association (UCP) chapter around you? Their national website is ucp.org They serve kids with all sorts of disabilities, not “just” CP. I think they changed their name to Aspire (or something like that) quite a while ago (like 7-8 years ago). Many of the different chapters I’ve worked with have lending programs for special needs equipment (meaning keep it as long as you are using it).
As a short term alternative, or to get you by are there any kids plastic Adirondack chairs that you could buy, then glue some non-slip cabinet liner to and add some straps (from a sewing store such as JoAnn) and stick in the tub. Getting bath equipment paid for by any insurance for either kids or adults is a pain, and I only have very rarely seen it be successful.