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Post by Jenifer on Jul 30, 2004 5:06:49 GMT -5
I am awake at 4:30 a.m. because I can't stop worrying about our MR Waiver problems. A couple of months ago Joy was denied MR Waiver services because a "child psychologist" assessed her and claimed she's borderline MR, with an IQ of 79. Based on that number alone, despite Joy's defecits, we were denied.
Now I have an appeal , and we have a hearing coming up. In this hearing, I have to prove my kid is MR. How the heck do I do that??
I feel like taking a regular kid from her daycare with us to use as a comparison against Joy.
"Zoe, point to the square." Zoe points to the square. "Joy point to the circle." Joy points to the square.
"Zoe, count to 10." Zoe counts to 10. "Joy, count to 10." "Un, tew, free."
This sux so bad because I know where Joy's deficiencies lie, but it just might not be enough for them. I guess I'll just try to get as many of the professionals I can who have been involved in Joy's life to say that, despite her progress, she is indeed retarded. She has fine and gross motor delays, a significant speech delay, and is all around just behind.
I think what makes me maddest about all of this is that her classification of "borderline" is like saying, "Well she's just a late bloomer." Except she may never bloom....that's the part they won't admit to.
Grrr.....if this was all about who can yell loudest, I would win. Unfortunately, it's about money. That makes me so sad because there are kids out there who need intervention and aren't getting it because of the almighty dollar.
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Post by snickers71801 on Jul 30, 2004 5:19:54 GMT -5
Just something that I learned recently. I was talking to Taby's early intervention teacher and she told me that everyone around here that applies for MR waiver gets rejected the first time. She told me that when we try to get it, go for the appeal and almost always, it goes through the second time. She also told me that I need to go to my doctor and have him fill out a statement saying that she is mentally retarded ( I hate that word). But that is what it has to say. It can not state that she is slower than everyone else, or that she is at a certain level. It has to state that she is MR. Which is stupid, I know, but that is what has to be put in there to make them believe it apparently. It is so rude, because I do not think of my child or anyone else MR. UGH!! I am not sure if that will help you any. The teacher said that I also might have to go to a psych with her to have her evaluated. But when it is found that she is slower, make sure that it is put in the statement that she is MR and not just slow. Dont worry about having the IQ in there. I think the people that process these things, are not very intelligent and it has to be put in black and white for them or something!! Try that and see what happens. Let me know how everything comes out. I can try to find out more info on it if it doesn't work.
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Post by Connie on Jul 30, 2004 8:35:04 GMT -5
Jennifer, We had the same problem, too. When we applied for our Medicaid Waiver for him the psychologist they sent out did her exam and test and filed her report. She gave him an IQ of 87 which was normal...low normal but still normal. So he was denied. I did have to reapply so we are now on the waiting list!!! Went he turned 3 and was transitioning into the school system...they did an IQ test. His IQ was 84. He did not quailify for special eduction because of this and they/we had to find another way to get him eligible for services. Which we did but, it's crazy!!!! They punish our kids because they are doing so well (which I'm happy about) even though they know the prognosis of DS and it's complication that may/can manifest later. It just makes no sense to me that they don't provide services. It would be cheap in the long run it they provided this stuff now because I beleive it could make them even more of a self sufficient person that relies less on tax dollars...Just my soap box!!! If you figure anything out...I would love to hear it. Connie
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Post by JonInIowaCity on Jul 30, 2004 8:50:33 GMT -5
I'm a case manager in Iowa (as well as the foster parent of a kid with MR). The only time that I've had a child rejected was when their full-scale IQ was 71 or higher. They may be delayed, but they're not classified as "mentally retarded". Unfortunately, that's the IQ cut-off point set by the federal government and that's what the Social Security Admin and DHS use to determine eligibility for MR-Waiver services. As a result, kids and adults are left behind.
What I seriously recommend that you do is find another child psychologist and her your child tested again. Since there's already an IQ of 79 on record, I would recommend that you include an IQ score of 70 or below for your child with the appeal. At the very least, make sure that the psychologist classifies the mental retardation as "mild mental retardation" or "mental retardation NOS (not otherwise specified) and not "borderline mental retardation".
Also, go ahead and have the various AEA and other professionals write up reports focusing on those deficit areas. Have them pin-point ways that her motor and speech skills are delayed. They should also focus on intellectual delays.
If this current appeal doesn't work for you, I suggest that you re-apply in a few years. It might be easier to highlight the developmental differences of Joy as a 6- or 7-year-old compared to Joy as a 3-year-old. Good luck!
-Jon
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Post by momofrussell on Jul 30, 2004 9:38:43 GMT -5
is this the MR waiver for medicaid??? Just curious.
MR is proven by an IQ test.. MR is JUST a term based on your IQ score.. just like SAVANT, GENIUS...ect... so don't let the term get you down. I'd get an independent psych test done... and get a doc note, that's a good idea.
We have had this discussion here before because of the term MR and WHAT it is if your child does't qualify. Before i had Russell I had NO CLUE that all kids w/DS aren't MR... I just assumed.. I know in the school systems they use that or mentally delayed... and ARC does use MR too. But not all kids are MR due to DS.. and that MR is what gets our children services or whatever weather you like the term or not.
Good luck!
A.
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Post by JonInIowaCity on Jul 30, 2004 10:13:54 GMT -5
One thing that I thought I should clarify, your psychologist report needs to declare a diagnosis of mental retardation, preferably with a range (mild, NOS, moderate, severe, or profound, but not borderline), in order to qualify for the MR-Waiver.
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Post by PaigesMom on Jul 30, 2004 10:35:58 GMT -5
Jennifer -
I went thru this with Paige when she was 3 (now 4) as well. I have a letter that worked to get her services - it was written by her psychologist AFTER they denied her due to her IQ score, being around where Joy's was.
If you (or anyone else) is interested, I'd be more than happy to share thru private email rather post on the board as it does contain some personal information.
Let me know - my email is dechnith@hotmail.com
Debbie
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Post by Chris on Jul 30, 2004 22:19:05 GMT -5
What states have a MR waiver for medicaid? Does Michigan have one?
Chris
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Post by christie on Jul 30, 2004 22:31:48 GMT -5
Hmmmm, have to say I am always baffled (sp?) by these IQ's of ones that are sooo tiny Luckily here in Jersey or at least when Chris was a tiny guy, nooo IQ was necessary, just the fact of having DS was enough to get services. My daughter, who for lack of a better phrase, is considered a typcial child and she never had her IQ tested till she was in early grade school. Talk to you Ped, my bet is they will have nooo trouble saying, JOY is MR and needs services. I may very well be missing something BUT come on how in the world can they get a true IQ test from a child that is not talking or reading like a typical child Best of Luck to you... CC
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Post by PaigesMom on Jul 31, 2004 9:30:43 GMT -5
CC -
You are so right - they can not get a true IQ score for a child that is not talking or reading/writing, or even playing like a typical child would. Nevertheless, they continue to try to get an IQ score by using various standardized psychological tests, and ask the questions to the child like "Give me the blue block" - they must be able to do it so many times in a row, or "Build a cubed train", show them the first block or two and then have them finish it. Then ask about body parts - if they cant talk they have them point to their body parts, etc. etc. etc. The thing is that they can COMPLETELY FAIL one section, and then DO GREAT on another section, which brings the total score up, or they can do great on one section and bomb the others and it brings the total score down - it is soooooo inaccurate.
There are many people who say to keep your kid up all night, dont feed them, do things just so that they will fail, just so you can get services, but then it's on their permant record, so when it comes for school and you want them included or included with an aide, they go "Hey wait, but your child only has an IQ of ____", so it's such a catch 22.
I think Jennifer is looking for MH/MR services like family driven funds, respite care, things like that. Here in PA, because of the DS diagnosis, the kids are automatically eligible for Early Intervention and such, but when they turn 3 and you want to start applying for OTHER THINGS, they must have a diagnosis and IQ score that shows mental retardation.
It's such a mess, the system is.
Debbie
PS. ---- Where in Jersey are you? I grew up in North Jersey and all of my relative still live there, we visit frequently, wondering if you are close by?
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Post by JonInIowaCity on Jul 31, 2004 13:08:19 GMT -5
One doesn't necessarily need to have an IQ score for the MR-Waiver in Iowa. However, they do need a diagnosis of mental retardation (either NOS, mild, moderate, severe, or profound). It helps if one can also have an IQ score along with that diagnosis.
HOWEVER, Joy already has an IQ score of 79 on record and that was the basis for her denial. With that in mind, I really recommend that you re-test her IQ to see if the second test comes back lower.
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Post by shellk on Jul 31, 2004 19:20:43 GMT -5
Wow this is all a little odd for me...In the state of Florida I don't even know if we have a MR waiver or what it entails..I know that SSI and SSD have turned us down due to income and medicaid will not cover her, kind of annoying I have agrued with them and the lat line that I told them was " Ya know if I sat on my couch and ate twinkies all day and gained so much weight that I could not fit out of my front door then you would classify me as morbidly obese and I would get help them..But, my child has health issues and learning difficulties and you will not help her at all....So, we kinda gave up the fight with all of it when she was around 2 years old...Good luck to you though.
Michele
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Post by Jenifer on Jul 31, 2004 23:13:47 GMT -5
Jon, I wasn't aware that in Iowa an IQ score is not necessary to get Waiver services. I was misinformed by my DHS caseworker. They told us we had to have a psych eval, and an IQ test would be administered. Services would be determined based on that score. Unfortunately, what we got was the IQ of 79 and a diagnosis of "borderline MR." I'm just not sure what to do now. The psychologist we used came highly recommended because he's been known to "cook the books" and make things work in the child's favor. That didn't happen for us. I knew Joy was bright going into this test, but I honestly didn't think she would receive a borderline diagnosis. I'm working with Iowa Advocacy and Protection to write some letters (Harkin, Grassley, Boswell, Vilsack) to at least open their eyes to this problem I am having. I am doing that from an advocacy standpoint--I figure this is the perfect time to try to pave some of these roads to make it easier for families in the future who could run into the same problems as us. I don't know if I'll have Joy retested right away. I am hesitant to drop another $250 to be told the same thing. On the other hand, w/o waiver services, her speech delay isn't going to improve. She aged out of early intervention this week, so she's currently getting no services at all. We're on the waiting list for Ill and Handicapped, but we're in line behind 800 other people. I think at this point I'm going to just wait for our hearing and try to corral as many people as I can who will speak on her behalf. I have a half-dozen people who can vouch for her delays and need for services. If we lose the appeal, then I'll probably wait six months and have her tested again. And I'll definitely keep her up all night before the testing! This really bites. I wish I could make the IFMC understand that by giving Joy services, she'll stay at the level she's at and someday live independently, be productive, etc. I literally sit her and scratch my head when I think about it because I just can't understand how this whole process can be so backwards and effectively serve kids the way it's supposed to.
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Post by christie on Jul 31, 2004 23:53:45 GMT -5
WOW Jennifer, Hmmm are you saying JOY does not qualify for preschool in Sept. and with that get speech services, because of this IQ they put on her?? YIKES girl JOY is just 3 and to say this is her IQ is nuts, they can noooo way have an accurate IQ for her at this age Sure does sound like a loop hole for them to save money
Man the more I hear bout other states, and all the complaining I do bout Jersey, I am starting to think I am in a much better state after all, for what they offer our kids
Plus, if you don't mind me asking, I get nuts over what districts do to our kids , why are you paying for the testing, if your state, district or what ever has these rules bout IQ' s of 3 years old that can't even speak well why aren't THEY paying for the evaluation??
Chris started early intervention at one month old with all thearpies provided, then at 3 off to preschool, where all his therapies were provided without ever having an IQ test. Just because of DS was all that was required. Here we have an orginazation called DDD that provides respite and such and again he qualifed just on the DS.
I wish you much luck girl, I have said this before and will again, things seem to get worse for our kids, when in reality they should have gotten better by now
DEBBIE we are in Bergen County which is northern New Jersey. What part of Jersey are your relatives in?? Hey we might even be neighbors
CC
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Post by momofrussell on Aug 1, 2004 10:53:19 GMT -5
I too believe that these tests are administered to TOO young of a child... I had that thought after thinking about it. Russell is 6 and has never had one. ALL states should offer a MR waiver for Medicaid.. it's called the Katie Becket waiver in some states.. BUT... (and this is what sucks) Even though it is mandated by the govn that all states offer a disability waiver for medicaid, EACH STATE can stipulate their own guidelines. Case and point, we lived in CA and DS ALONE qualified... no test, no IQ no NOTHING... we then moved to IL and your child basically HAS TO BE pretty much in a hospital, or "at risk" pretty much SEVERLY disabled (or so they tell me) to qualify, so Russell, with all his DS, Autism and blindness (he was legally blind at the time) did NOT qualify... then we moved to MO... and although he qualifies... they only have a few to hand out each year.. and they were tapped out LOL... so we do NOT get medicaid.. nor have we ever. I mainly wanted it for diapers... If you are unsure of if your state has the waiver or what it's called, post up your state and I will be glad to find it and post the link.. and what it is called. A.
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