I'm so over being jacked around and playing games to obtain government assistance that is designed to assist Noah and children like him.
A stair lift victory finally came my way. I'm celebrating - kind of. I mean I am genuinely relieved it was approved as that is one rather significant hurdle down. And the really funny part is I have to pay out of pocket $30 for it. Because well - it's just too easy for the State to fund all of it. So I'll fork out $30 - whatever. But there are so many other things yet unresolved and in the pot so to speak. And in some way it's kind of a bit of a game changer for the rest of the year's benefits - especially since they took some of Noah's benefits this year away to fund things that should have gone on last year's benefits. And I can kind of anticipate the next play: "We denied the pillowcases because we weren't sure about funding due to the stair lift." Even though the pillowcase decision had no bearing on a pending decision on a stair lift. But will now be used as an after-thought defense.
And then I received this lengthy email that really talked in circles that just contributed to my agitation and rather diminished any feeling of victory that I was feeling over the stair lift about Noah's sensory clothing request. Apparently, the hold up on there decision making process is that they are attempting shopping comparisons and researching what they feel is the "typical" out of pocket yearly costs that parents spend per child on clothing. According to the state the average household spends between $800-$1500 per child a year in clothing. I have no idea where they pulled those figures from, if you do any type of internet search you're going to find pages fulls of variables and thoughts on annual figures of clothing per child. These variables depend on if we're talking about a single family, divorced families, families on limited income, families who have children with special needs. What is typical? Who do we define typical these days? Are the Kardashians typical? Are we typical because our "typical" child's clothing costs $3.88 at Walmart and I'm lucky if I can score him $50 worth per year new? Then not only did they suggest that Noah's clothing costs fall under "typical" parenting financial responsibilities and are not above and beyond what a "typical" family would pay. (I don't know any typical family who has a child's 12 pack of socks cost $75.... unless again we're talking about the Kardashians...)
But they decided to provide me with a comparison chart of what Noah's sensory clothing requests would look like up against apparel from Kohl's and Target, for what they feel are similar in nature. First neither of those stores carry sensory clothing so we're comparing apples to oranges. A graphic T-shirt at Target is NOT the same as a graphic print in sensory clothing made from Bamboo fibers. Not the same. You touch it and know it's not the same. The prices tags of course won't be the same either.
Their comparison chart did nothing but get under my skin.
“Okay, I researched most of my research on Target and the Sherpa hoodie at Kohl’s site; Target didn’t carry the same type of item.
T-Shirts, one polo and 5 graphic pullover short sleeved shirts
6 sensory shirts requested, average cost $25.58; Average typical cost of comparable item; average 10$ each.
5 sensory shorts requested, average cost $26.60 each; average cost of comparable item; 12-14$; $13
Long sleeve shirts;
5 sensory shirts requested, average cost $28.20; average cost of comparable item; $14-17; $15
Cargo pants; fleece type
4 sensory pants requested $43.50 average cost; average cost of comparable item, 17$
Long pants, stretch/sport
3 sensory requested, $30.60 average; average cost of comparable item $12
Hoodie, sensory Sherpa lined, $46, 1 requested; average cost of comparable item $33
Front Zip Hoodie; jersey
1 sensory requested, $38; average cost comparable item $22
Coverall one piece PJ type;
3 sensory type requested, $33.66 average cost; average comparable cost $9
PJ Set 2 piece
2 sensory type requested, $39 average cost; average comparable cost $16
Seamless sensory socks, 12 pair 75$; comparable price $7 per 6 pack; $14 for 12.”
The original email was really unclear about their intentions are of reaching a decision on this medically necessary request that a doctor signed! After continual requests for clarification it seems that the sensory request may be approved (with an unspecified amount), the really unusual request is the State would like me to send them a check for the "difference" for typical clothing. Which seems so backwards to me. Here are Noah's benefits designed to financially assist him, but wait let's ask for a check from the family to pay for what they deem the family's portion of "typical clothing costs." I think it makes way more sense for them to determine an allotted amount dedicated to sensory clothing and then send us a gift card to each sensory clothing distributor so that we can make purchases on Noah's behalf. I proposed that would make more sense than actually having a mailing county services a check. Here's your child's government funding, but wait you send us money instead!
I also have some big concerns about Noah's accounting of CES funds. There seems to be some big discrepancies between my records and theirs. They claim to have paid out hundreds more for a bathroom modification than they told me was approved, they claim they've paid out more respite care hours than they actually have according to W-2 statements and records of hours, therapist payments are inconsistent, they say they gave Noah a communication app gift card for an amount that was higher than what he actually got and saying that Noah's home modification costs were higher than they were. And I keep thinking if they were a bank I would have fired them and closed my account! So their explanation is that they are assessing: the overhead fee that FRE program charges for doing business. And that they can take 3.5 percent for their fees in addition to any services paid on Noah's behalf. So let me get this right, Noah gets 36K yearly minus 3.5 percent that the State wants to pay themselves with... and keep in mind Noah doesn't even necessarily get to access or utilize that entire 36K, with denials, and the State gets to keep whatever they don't allow him access to each year because they funding doesn't roll over from one year to the next.
And why does this all matter? Because in my mind it's a form of fraud. Where is the money actually going if it's being reported incorrectly and not going to the children it's designed to help? And there are so many parents in my situation that don't question the accounting reports - they assume they are correct. We are so overwhelmed that many parents don't have the time to sit down and figure out of the billing and accounting is correct. And I can guarantee that most parents have no clue that the State is pocketing the money difference for what they feel are percentages of fees they want to pay themselves with.
I think it's rather come to a time where a meeting needs to happen at the State level to discuss these types of ongoing difficulties with processing the requests and fulfilling the needs of children for things that they should be able to utilize as part of their CES funded plan. I'm also not cool with the fact that they are offering certain services upon the condition of the child's diagnosis. For example a child with Autism on the same plan is entitled to swim classes (because there is the assumption they'll prevent the child from being a drowning risk) and then Noah who is denied the same benefit under the plan because (he doesn't have the capability of learning not to drown). Subjective really because who says depending on the severity of Autism that you can teach that child not to drown? And the benefits should be universal across the board regardless of diagnosis. CES funding is not based on diagnosis. And it's even further irritating when you find children in other counties with Noah's same diagnosis being able to utilize swim funding but his county says Noah cannot. We have a very unbalanced and unfair system going on here. And that's not cool with me.
I'm not purposefully trying to make waves, but these types of things should be red flags for anyone and something that needs to be addressed and corrected. The same rules should apply for everyone. While some families are receiving great services on CES, there are still a lot of families like ours that are constantly hitting these road blocks.
I also got a call that they decided to quit funding Noah's hippotherapy. Yet another problem to deal with. His therapy center called asking for a credit card that I don't have...
Of course we were told Noah had 27 sessions covered under CES, he has had seven to date. The hippotherapy center, as frustrated as I am, express they too are rather put off with the difficulties it takes to correspond and receive accurate information status on children utilizing CES funding. And these centers don't have to accept this funding. So if it becomes a hassle for them they can very well withdraw from accepting the program for financial assistance to families. Saddle Up a hippotherapy center down South has already decided to stop accepting Medicaid funding as of June 1st. After some phone calls it was then decided of course that they made a mistake that Noah has $685 left in his adaptive rec funds. Which would get him through the summer - but not beyond that in hippotherapy. I'm not sure who is working these figures but I'm losing very little faith that any of them have any clue what they are doing.
And the thing is I don't want to view these people as the enemy but they are literally driving me crazy. And I don't perceive them as people who want to assist Noah - but rather who are doing their very best to avoid helping him. I wish we could get to a place where they'd realize that there is a better way to work with families than how they are going about it. And that children with special needs are being denied the help they truly need and deserve while others make a financial profit from their circumstances.
So let's JUST DO IT! Yes you can!
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.