Cut Us a Break

Life has always been about learning as you go.  I wish it wasn't.  I wish someone said here's the in's and out's of special needs parenting.  All you will ever need to know can be found these volumes of encyclopedias and hand them to me and say here you go.  There are really three separate hard parts to special needs parenting.   There is all that comes along with your child as a person.  The lack of skills, not being able to sit, crawl, walk, talk, or self-feed and having to care for his daily needs 24/7.    Then there is the appointment aspect of things, coordinating therapies, doctor's visits, and specialists.   Then the most frustrating portion of things dealing with government agencies, equipment vendors and distributors.

For years I have felt like there is a huge gap in accessibility of adaptive equipment for children with special needs.   It's taken me a bit to figure out who rubs who's back and the dynamic of this really messed up system.  And the tragic thing is I know no matter how much I complain I can't fix it for Noah or any other child like him.   And money talks.  It always has and it always will and unfortunately because the majority of us are at Medicaid's mercy, nothing about this process is fast or even fair.

Noah is a complicated little guy when it comes to equipment.  He's particular, he has a multitude of sensory challenges, and the support accessories he needs can be involved.   Finding the right match for Noah as he continues to grow is hard.  Noah is not a one-size fits all child.  And by that I mean, he has several pieces of equipment that all have a specific purpose.   He has a feeding chair, he has a power wheelchair, he has a chair that he uses for speech because it allows for more head support, he has a chair that he travels in.   And none of these pieces of equipment are good substitutes for any other activity.  Right now my difficulty is a wheelchair that fits and is suitable for traveling.  I think I've found a model that I think would very much work.  Noah likes the "car seat" design to wheelchairs, with a 5 point harness very typical of what you'd see in a traditional car seat.  He likes big flared headrests that he can't get his head out of, with a large pummel that prevents his hips and body from shifting with his high tone.   I think I found a model that would work, the new Ottobock Neo with Kosi chair.   Looks very much like the car seat design that Noah gravitates towards.  And would closely mimic what he was used to the Recaro special needs car seat.

The Ottobock Neo with Kosi Chair

I pretty much know if a product is "Noah friendly" if I see it in person and even place his body in something just 1 time.  I know him that well.   The problem being I can't seem to get my hands on this model to see it - or at least not what I gather will be any time soon.  These vendors let out one demo product to the state.  Which goes from family to family to trial.  A family could easily have a product for 30 days or more to trial, who knows really where I'd be in line.   But it delays my timeline of making a decision significantly.

You wait to trial a product 2-6 months.
You get to trail a product 2 weeks-30 days or more
You ask your DME to put in a request for the product and gather medical necessity requests from your child's physician 1-3 months
Your DME actually puts in the request and you wait on Medicaid's response 2-3 months
You get approval and the product is ordered 2-3 months
You get on the schedule for product delivery 1-2 months
The actual wheelchair arrives at your house 1 month later.

Having $7,500 at your disposal... priceless it likely would arrive in less than 2 weeks from the date of purchase.

This process of getting a new wheelchair from start to finish can range anywhere from 1 year to 18 months.  Potentially much longer if you get a Medicaid denial, which can happen if you aren't at your time guidelines (i.e. they only provide a new wheelchair every 3 years).

The other gripe I have is the amount of money these things cost.  I am for the most part at Medicaid's mercy.  If I wasn't I would have just gone out and purchased that Krabat Pilot Crawling Device.  But I, like most families don't have thousands of dollars just laying around.    The mark-up on these products is insane and these prices make an out of pocket purchase impossible to shortcut these timelines.

Sometimes I wish someone would just cut us a break.  We shouldn't have to wait for eternity to have our child be able to have access to things they need for daily living.  There should be forced shorter timelines for all of us.  Like a law that said a DME has to put in a request within 2 weeks, that Medicaid has only 2 weeks to get back to you with a decision, and 2 weeks to order it and have it delivered to your door or in the mail.   Noah needs help now,  waiting a year or more to sort things out makes me swell with tears.   It has been a full year since Noah's Krabat Pilot crawler request, and of course I faced a denial, an appeals hearing, an appeals win, then an appeal reversal, ultimately ending up in a complete denial... but can you imagine if Noah would have had that crawler a year ago, what progress he could have made in that year I spent fighting so hard?  And can you imagine that same kind of wait for a walker to allow a child to walk? Or a wheelchair that properly supported a child's needs?

I dream of these big life-altering changes for children with special needs... I dream of a time when it's an easier fight for their parents, when we didn't have to go to bed and pour our tears into our pillow hidden from our children with that feeling of falling short to help them in all the ways that we need to. 

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.