When I tell you that each day I am faced with an incredible challenge
when it comes to helping Noah, I'm not exaggerating. I'm not fluffing
the truth. I balance between fifty to seventy emails on a daily basis
all dealing with Noah. I have had seven phone calls today, between
county services, nutritionists, following up on doctor's prescriptions
and returning calls that I pray lead me to avenue of help for him. I am
exhausted. I am worn, I am tired. And I can't stop. I don't get the
opportunity to say screw it all, I'm done and close the door, because
then where does that leave Noah?
I can tell you where it would leave him.
It would leave him without therapy
It would leave him laying on the floor all day long because the world thinks he
doesn't need a feeding chair, or a wheelchair, or even the right to get
better with walkers, crawlers, or standers
It would leave him without the creature comforts we all take for granted
It would leave him without resources to participate in life
It would leave him with access to his own home that he lives in
It would leave him without a way to leave the walls of his own home
I
have this stupid fallacy in the back of my mind that someone is going
to come to my rescue. But no one ever comes. So I sit here with my
tears, crying as I type a blog, which means nothing to anyone but me.
My pain as I carry it alone. No one can feel it, so they read it and
move on. And I know I'm simply a statistic, one more mom, one more family
lost fighting the system for their disabled son. As my youngest wipes
my tears and tells me how sorry he is. When I should be the one telling
both my children how sorry I am that I can't do a better job fighting a
broken system, to find us help and financial assistance.
Today
I was notified that the State has denied Noah's stair lift to the
basement to allow him access to his handicapped accessible bathroom in that they just funded in the basement. But it's not because of what you might think. It's not
because the request was too expensive, or that it isn't a medical
necessity, or that there is no reason for him to need a stair lift.
This is the good part. The part that blows my mind because it makes
zero sense to me, other than someone is purposely playing games with me.
It has been denied because the State wants me to invite two
more contractors into my home to give me two more estimates on how much
it would be to build Noah an en suite from his bedroom to create a
bathroom yet a second bathroom for him, rather than fund a stair lift for the bathroom that they just funded. To build an en suite would eliminate on bathroom, a
laundry room, access to the garage to get Noah into the van, a two
storage closets, creating the need to relocate a laundry room to the
basement (where the current handicapped bathroom now is) a new entry
into the garage and relocating all plumbing and eliminating a closet for
Noah's clothes and supplies. That all sounds like a terribly good idea
and cheap too right? And so logical since they just funded a modified bathroom request less than six months ago. Another bathroom on the main floor quote could easily cost the state
40-60K, when they only give Noah 37K a year to help him (which he
doesn't get to even utilize it all because they deny most of my request
so they keep a large majority of that 37K) Which is why the State said put it in the basement to begin with upon recommendations of multiple contractors and a certified Occupational Therapists report. And what does a second
bathroom upstairs even have to do with the fact that we need a stair
lift to get him to the basement where the bathroom they just funded now is?
We're going backwards. Noah has a bathroom he needs to get to which
meets 100 percent of his needs and it's in the basement. He doesn't need two bathrooms he needs one bathroom and one stair lift to get to that bathroom. It makes no sense to get two more bids for another bathroom just to meet justification to get a stair lift. I am asking for a stair lift I am not asking for another bathroom. Why on earth do I need additional bids for another bathroom?
It's a
stall tactic one of many they're going to do so that we get to the end
of the year as I've tried to jump through all their hoops to say whoops
we'll have to consider this next year, and thank you for just allowing
us to pocket all of Noah's funds that we didn't let you use while we
made you try to chase the carrots we dangle in front of you. It's funny
to them. They did it last year, they're doing it again this year.
And
if you think it's going to ever get better? Likely not. It's going to
get worse. There is in fact a new Bill being heard today,
Bill HB 15-1318 to Consolidate Intellectual And
Disability Waivers which people should take notice of because employment
services are not included for disabled adults and there is no mention of
implementation on how consolidation would work, the number of f
amilies
it would put back on wait lists and the amount of time to get help to
these families. Or even the families that would no longer be eligible
for help. Remember Noah started with a 7 YEAR WAIT LIST! And that this
bill proposes 1.5 Million ANNUALLY cost to manage which is money that
could go to families and individuals in services that are on the wait
list. This money will create jobs for the state system or consultants
but isn't designed to help the very families that are struggling. That we no longer have a say in what our
child needs or that we have no room to negotiate what is funded versus
what is not. This will take away from our children's needs. It's
helping the government it's not helping our children. 1.5 Million
dollars needs to go towards helping them, not to assist the state in
getting financially fat and happy at the expense of our children.
When
am I going to be able to wake everyone up from the illusion that
children like Noah are well cared for by government services? What does it
take for me to scream it from the rooftops before you hear me? Before
you understand that I'm charging thousands of dollars in debt to get him
necessities like a wheelchair, to pay for his out pocket supplies, adaptive equipment
and needs. When I am borrowing money and taking cash advances from
anywhere I can find it for his therapies, which lands me in overdraft
charges and this vicious cycle that is so close to flushing us down the
toilet. Because I don't know what else to do. And the help that is
supposed to be there - isn't. It's a joke. It's pretend. It's made to
make people like you believe that families like ours are okay. The
world harshly criticizes me and says I'm painting myself as a victim,
when they have no idea that I'm the biggest fighter you've ever come
across. But I fight, and I fight and I fight some more, but I am only
one person. And I have to fight alone. I have always been an army of
one. No one will stand with me on the front lines. I am alone. I am
Noah's mom.
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.