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 families 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.