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Saturday Evening Post

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Extra Large Coffee CupAfter a whirlwind week, I feel like I have just stepped out of a time warp. I have missed this post more than all the others with A to Z and the 30 Day Challenge. Grab a cuppa and snuggle into a rocker. Clyde is bursting at the seams.

M3

Over the last two months, I have proven I am not the only one talking around here. A few thousand comments passed without me saying a word, especially in May. I have said it before, yet it still seems inadequate:

You are the best audience anywhere.

You surprised me with some of the LOVE!, shares and the interesting things you said on social media about the 30 Day Challenge. Good grief! I laughed until my cheeks hurt over some of them. You absolutely are the reason I do this.

Many thanks to the new subscribers and visitors who have come compliments of FTP and the Widowed Blog Hop.

Flash

If you have not been to the FTP page, what precisely are you waiting for? Some new authors will debut in this quarter’s FTP. Talk about talent! I love the themes to the words. I adore the twisted things flashers do to the theme.

So far, your favorite of my flashes this quarter is reservations. Yes, it is a twist from what you may have been thinking with a book named Flashes from the Bistro.

This is your personal invitation to start flashing. So far, there are a number of authors who were surprised by the profit share portion of the book. If you have not already picked up the first three books, now would be a great time to grab a copy of them all. The authors appreciate your support.

Walkabout

When I suggested to Val we should visit the SPAM Museum, she literally said, “You want to go where?” So far, your favorite of the trip posts has been Wombie Heaven in Minnesota.

I am humbled by your reactions to Stereotypical Palaver. It really is up to us to make this abomination go away.

There will be a few other posts which hinge on the Minnesota trip. There are just a few things I still have to say, although I think Clyde could go on for a few months with his observations. IJS.

Scheduling

Half Past Dead

Half Past Dead

A few of you know there will be a revolution in Maison de Dwyer over the next two months. We are going to begin a 40-hour per week schedule of therapy. This will be the most intensive treatment in their lives. This week has been filled with assessments and many other appointments.

The SIB was filled with questions this week about how it would change the way M3 and RP operate. The short answer: It really will not. It just means I will be doing things at different hours than before. Since I live on virtual time anyway, I do not see there being much in the way of upsetting the apple cart.

Right Turn, Clyde!

Clyde has had a bone stuck in his craw for a bit over a year. That would have been about the time Little V was denied for Medicaid. The one person who makes that decision showed her profound understanding of the handicaps she is charged in protecting by saying,

Well, she may have outgrown her autism.”

Cricket Chirping

Gobsmacked.

Despite state agency diagnosis and active treatment records, she took the word of someone who had spent a total of 10 (count them 1, 2, 3, 4, 5, 6, 7, 8, 9, 10) minutes observing Little V as she did her usual protective helicoptering of her non-verbal, little brother. In her estimation, if Little V could shepherd her brother (another child of which she had no knowledge), she would be “just fine in a classroom setting”.

I was wrongThis same person attempted to issue a retraction and corrected assessment after 30 minutes of direct interaction. A few months later, she tried again when I (in a fit of unmitigated revenge) refused to prepare my children for their interaction with her. She got the full force brunt of autism in siblings without any ABA intervention. I hated it because it was equally hard on the children.

Little Ms. I-Know-More-About-Disabilities-Than-Everyone-Else determined, despite a psychiatrist’s report, pediatrician’s report, psychological autism assessment showing a clear 6 on the autism scale, two speech pathologist’s reports, pre-approval for a PDD waiver and two independent interaction reports beside mine, that an unqualified someone who had never spent any qualitative time with the child would be the only one unbiased in the entire shooting match.

Fast Forward

The Early Autism Project came for a visit yesterday. The lead was very surprised Little V came right up to her (with Bacchus on the leash) to ask who she was and why she was here. What did that lady have to say?

When she walked up, she did not look like she had anything wrong with her. Then, she opened her mouth. No doubt in my mind: She is autistic.”

We go on Monday to reapply to the same person who issued a denial five months in the past (I got it in April dated November.) for additional coverage for Little V to supplement the coverage she has for the first three months of the waiver.

Enter Ape

Right turn, Clyde.

Right turn, Clyde.

Bean counting aside, how is it plausible to have one person decide (and also handle the appeal) whether or not a child is qualified for disability insurance? Moreover, how can guidelines be set up where the decision is made based on the single dissension when there are nearly a dozen in favor?

It is enough to make an ape wonder.

Until next time,

Red Signature


At what point does bureaucracy become corruption? Should children who require the most therapy be denied because they will cost the system the most?

Thank you for all of your support during my hiatus.

Hashtags: #autism #bureaucracy

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30 Comments

  1. Holy Crap, Clyde – what a hornets’ nest you have poked. Methinks it needs a bit more poking and shaking (especially if) Little Ms. I-Know-More-About-Disabilities-Than-Everyone-Else comes anywhere near it!!!
    Red, Good thing you have intelligence, critical thinking, an abhorrence of stupidity and bullying, a snarky tongue AND a great support system!!
    You GO GIRL!!!!!!!!!!
    hugs and more…

    🙂
    BuddhaKat recently posted..Fractal Flavor Fav – Sunday editionMy Profile

    Reply
  2. If you were broke enough to qualify for SSI for her, after jumping through hoops of course, Medicaid would be automatic as long as she qualifies for a single $1. The coverage is well, so-so. What it doesn’t cover is rather important, but what it does cover makes you thankful.
    laurie recently posted..Finally Friday!!My Profile

    Reply
    • All it is going to cover is the year of ABA for the PDD waiver and the $800 a month in speech. The Feds will not certify either of them for SSI because it would be a waste of paperwork. They both make more than SSI would pay.

      Reply
      • Wait Medicaid covers ABA there? It won’t cover it here, and that’s the most expensive therapy that short kid had. SOB. I got to move, well maybe not to the 9th circle of hell, but I got to move.
        laurie recently posted..Finally Friday!!My Profile

        Reply
        • No, it does not cover run of the mill ABA, at least I do not think it does, not regular Medicaid. TEFRA does, but not regular. This is for the PDD waiver. The entire point of the program is a 40-hour per week ABA year.

          Reply
  3. Sounds like the fun and palaver we have here in the UK getting support for kids with disabilities!

    Support IS available, but the kids have to be ‘assessed’ by somebody who is just going off the paperwork.

    Thankfully I’ve had no experience of it, just what the Government put me through to get ESA, but it doesn’t take Einstein to figure out just how bad it can be when it’s YOUR kid! 🙁

    Hope it works out for you hun! 🙂

    Love and hugs!

    Prenin.
    Prenin recently posted..Saturday – the pouch and memory card arrive!My Profile

    Reply
    • No doubt it will. I have a lot of troops pulling for me this go around.

      Reply
    • Being assessed off paperwork is wrong, wrong, WRONG. I do not know how it is legal.

      Great post, Red!
      Noeleen recently posted..Echoes, a life departedMy Profile

      Reply
      • I would like for her to have to see my children in person. I would love for my daughter to spin around her office for half an hour until she understands how children do not outgrow autism. Ever. Great to see you today. xxx

        Reply
  4. A problem I’ve found with bureaucracies is that they can be excellent systems, but they’re still based on people to interpret and implement them..

    And some people are idiots.
    El Guapo recently posted..Beatnik Poetry Slam – Travelin’ ManMy Profile

    Reply
    • ROFL! Agreed. Great to see you tonight, Guap. If I ever get out of the flashes tonight, I will be by. I need a foolishness fix after all the foolishness this week!

      Reply
      • It’s a pleasure to see you whenever you come around, Red.
        I was going to say something encouraging about your upcoming appointments, but “Don’t make them realize how stupid they are” didn’t seem appropriate.
        Fortunately, I doubt I’d be the one that put that idea in your head… 😉
        El Guapo recently posted..Beatnik Poetry Slam – Travelin’ ManMy Profile

        Reply
        • Bwahaha! No, there have already been more than a half dozen ppl tell me to mind my manners and not everyone is as smart as I am.

          Me? I want to know WTF not! *giggles*

          Reply
  5. Children should never be left in need when their development and growth are in critical need of of services. This dissenting person should be subject to a job performance assessment by you, and given the boot. It sounds like a power issue to me. Grrrr.
    Gail Thornton recently posted..Interview with Poet Laurie ChildreeMy Profile

    Reply
    • I have my ways of making the dissenting voice a non-entity. As to the other person, need is in the eye of the beholder. The system is not set up to gauge need versus resources. If you have resources, you are not considered in need. IOW, the fact that my children’s combined therapy is more than 3X my income does not matter because my income is above the poverty line. You know, only poor people need help, right?

      Reply
  6. I don’t believe there are many who would be able to keep their heads on through some of this, many would simply break. I am proud of you, actually I am in awe of you.

    I say this so often, I know, I know there are so many things that must happen first: We have to get you out of that circle of hell!

    Reply
  7. Got it in April dated November? Geesh! Talk about too lazy to go to the mail box.
    All kids (all of them) ought to get the care they need with little trouble if any at all.
    I can’t say I know what you’ve gone through, but it sounds like torment. I will be hoping only the best for little V and you in this whole ordeal.
    Much love xxx
    Deb recently posted..Flash in the Pan: BuffetMy Profile

    Reply
    • That floored me. I recognize it was a way for her to cover her butt and be sure I could not appeal without beginning the entire process (six assessments and more than 350 miles) at the start… again.

      We are going to win this time. <3 xxx

      Reply
  8. I shake my head; it’s all I can do. I met a woman who’s 3rd child was autistic and had some kind of muscular disease. She should not have lived past seven months or so. She was refused aid because the child was entitled to only one treatment but not both–something along those lines. The mom had the assessment in hand but still no go. She went to the papers, finally, out of desperation. It was a strenuous, up-hill battle and she finally got the treatments needed.

    Makes me cry. Whether you have money or not, every child is entitled to the best care available. Period.

    I cannot imagine the energy needed to get what your children need. My heart goes out to you, Red.
    Tess Kann recently posted..Flash in the Pan – CantinaMy Profile

    Reply
    • I have heard of a few cases where it was one or the other. Mine is merely the millions of layers which go into the treatment. I have a ton of ppl who just want me to medicate them, even though there is no pharmaceutical treatment for autism. I would not want to go through life sedated. I will not be doing it to my children. <3 xxx

      Reply
  9. I imagine there is a lot more of that kind of discrimination than we know about. Up here they seem to increase wait times for critical procedures in order to thin the herd. If someone dies before they get treatment, it is a lot less costly to the system.

    I hope you appeal goes in your favor. If half of the reports said Little V was autistic, and half said she wasn’t, then the ruling could understandably go either way. But how one person can deny all the evidence from experts that says Little V is autistic is beyond me.
    Binky recently posted..The More You KnowMy Profile

    Reply
    • They do the same thing here. There is an expedited process for those who are terminal. It just speeds your denial, so you can appeal. My late husband was denied with mesothelioma and adenocarcinoma with a life expectancy measured in weeks.

      We shall see tomorrow!

      Reply
  10. It seems to me that this woman knows very little about what she is representing, if eleven people out of twelve say that a child is autistic then how has she got the nerve to say anything otherwise especially when she has had such little time spent with that child, it is absolutely outrageous.

    I hope that by the time you see this so called expert again that she has recognised that there are learned individuals besides herself that disagree with her findings, then perhaps she will do the right thing and grant disability insurance without all the red tape and preposterous BS.

    Sorry about that Red but it is definitely wrong and you should not be requiring another meeting, it is self explanatory that disability insurance should be granted, it is as simple as that.

    As for the FTP’s I hope that they generate lots and lots of cash so that everyone will be happy and of course more importantly that the good causes that you have chosen will reap some fine rewards. I have three more FTP’s to finish for this quarter and I will be finishing those this week 🙂 I am already looking forward to the next quarter, we are having fun with these are we not? 🙂

    Have fun today or else? 😉

    Andro xxxx

    Reply
    • The whole thing just makes me tired. *le sigh*

      As to FTP, it is one of the best sellers so far. I am hoping for more people looking to buy the entire set! I am looking forward to presenting the money to the charities. I will be announcing them next quarter when we have enough contributions.

      Like you, I am looking forward to next quarter. It is going to be wide open for the imagination. The words are terrific and rather abstract. >:)

      Reply
      • I like a challenge (now and again 😉 ) so this sounds absolutely perfect, wow I am now wondering what words you have chosen 🙂

        Have an awesomely sweet start to your
        morning and a beautiful day all round 🙂 😉

        Andro xxxx

        Reply

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