There seems to be a reoccurring theme of frustration on this
journey. I would argue most of that frustration being valid. When you get a
chance to see life in a different perspective, you get the chance to experience
it in a new light as well. My eyes began to witness the injustices for the
disabled community, the inaccessibility this world offers, and the lack of
awareness of all that and more in mankind. You ever see someone post a need on
Facebook and instead of responses noting they can help with that need; you’ll
see links to organizations or suggestions outside of that need? Frustrating!!!
I get it, people are just trying to help. I used to be that person too but now
being on the other side, I can see how unhelpful that really is. There are most
definitely numerous organizations out there. Some claiming they have all the
resources for solutions to our problems, but you must jump through hoops to
obtain even the smallest bit.
I was recently venting with a friend who said, “I get it.
You can’t let it go because it’s wrong what they’re doing.” That’s the type of
person I am. I was attempting to find solutions for Olivia’s transportation now
that she is growing bigger. Our current vehicle was too small at this point.
Every time I drove, and mind you I am on the petite side, it was knees to the
dash with steering wheel in the lap and pray to God you don’t get in an
accident on the way. I brainstormed with Olivia’s caseworker on solutions. I
was told to price different options, so I did just that. I called and emailed
multiple vendors and received quotes anywhere from $25,000.00 - $35,000.00 to
convert a vehicle to become wheelchair accessible. That price would be on top
of the price of a new vehicle. I went back to the caseworker with this
information, and she mentioned in order for DDA to cover it, the vehicle would
need to be 3yrs or newer and less than 50,000 miles. Which now means based on
their guidelines I need to look at a budget for a vehicle I did not have.
During the process of researching what vehicles can become wheelchair
accessible, one of the vendors mentioned DDA will not cover that large of an
amount for a conversion and I would be lucky to get $11,000.00 - $12,000.00.
That took me by surprise as this process was new to me, but I did confirm that information
with the caseworker. She said it was an all or nothing coverage. So now I need
to go back to my research board and find a cheaper solution.
Luckily Olivia’s therapist was able to get her a “special
needs” car seat. The only caveat to this was that you can either get it to
swivel or recline but we needed both. We chose recline to help combat the
severe hypotonia Olivia battles, but now we need to find a vehicle that a
swivel seat could be installed in since that option would fall into DDA’s
budget. Again, back to the drawing board and list of vendors for help. The
vehicle we needed had finally been narrowed down and I notified the caseworker
it was being purchased so she can submit the paperwork for them to cover the
swivel seat. Oh yeah, I forgot to mention, I had to get medical letters of
necessity from multiple providers and some records to back up our claim to
submit (hence the paperwork).
DENIED!! About a week later the caseworker calls to let me
know it was denied by DDA. Excuse me, what?!?! Reason being, “client does not
differ from the majority.” After swallowing the initial lump in my throat, I
asked for the committee’s information so I could dispute the decision, because
my daughter clearly differs from the majority. I began gathering all
information and documentation needed along with all of Olivia’s providers to
back us up. There was no way they could deny it this time. Wrong again!
DENIED!! They changed the reason this time. It was because they felt her
insurance needs to cover it and if it was denied then to come back and try
again. At this point I wanted to scream. Every day I was in a bad mood trying
to solve this because the vehicle was already purchased, and the car seat
already ordered. It took precious time away from my family that I can’t get
back. This was now overflowing into my home life. After venting to other moms
who have been through similar struggles, they all had 1 thing in common to say.
That was that DDA was trained to deny all first attempts because parents don’t
typically fight back. I decided to try one more time. I did as I was told and
attempted through insurance. Long story short, this was never something they
had or will cover. I received a denial and took that back to DDA with a hopeful
heart. The caseworker sent this off and you guessed it, denied again. They said
I now need to appeal through insurance for that “extra denial,” then I could
come back to them and try again.
Why am I telling you this boring story? To stress the importance
of awareness. At this point, I threw up my hands up and said, “I’m done!” It’s
been an 11-month process that had me running in circles. My family needs me,
especially Olivia. It’s true, I still believe it was wrong what they did and
continue to do to other families in need. They market to families all the help
they can provide; then make you jump through hoops to get the bare minimum. You
got it wrong this time DDA, but I choose my sanity at this point. I did all I
could, right?
Next time you question yourself after jumping through hoops and trying to climb out of a hole on your own,
know that you’re a badass parent who has done the most. It is the system that
is broken, not the people. Next time you read a request for help on Facebook, be
aware that the person may have already jumped through hoops and back before
gaining the courage to post publicly. A link to another organization may not be
the answer unless they’re specifically asking for that. One way or another my
daughter will get what she needs. Our family are masters at rearranging paths for
a higher need and we will do just that.
