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WE GOT THE WAIVER!!!! (..i think..)

realisticdreamsrealisticdreams member
in Special Needs

I'm like 99% sure.  

The lady who was supposed to come with the nurse (case worker? I guess) had something come up & she called me this morning.  She said that since we had been waiting so long & they were scheduled so far out, she was just going to send the nurse out today.

Both ladies were super nice, and the nurse actually got here an hour early (I had JUST got out of the shower!).  She had me sign a couple things (not sure what they were, honestly, lol) and asked me some questions.  Like does she need help in someway with everything, and I said yes, but she can walk, but she has SMO's so that counted as an assisted device, I guess.   She was actually asleep the whole time & she didn't make me wake her up or anything.  

I gave her a copy of all of Peyton's doctors & she said we should hear something in about 2 weeks.  The MD at the health department has to sign off on it & then it goes back to the case worker & then to the waiver pay people.  She will most likely qualify for about 40 hours a week of caretaker help.  We can either use an agency or friend/family member who doesn't live in the house.

I'm super excited & I think at this point we pretty much have it set in stone, but their is always a chance something will glitch!

I'm completely shocked at how simple the waiver process really is, once you find one that you can qualify for!  She will have it forever, we don't have to reapply, her medicaid will have to be re-done on a yearly basis, based on HER income, but other than that, it's set in stone.  Until we don't want/need it anymore.  

This is such a huge relief, except now I will be PISSED if Dh gets this job in WV and wants to move back.

If anyone has any waiver questions, I can try & answer them for you.

 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: WE GOT THE WAIVER!!!! (..i think..)

  • trophywifetrophywife

    That's wonderful news.

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  • MummyGruetzieMummyGruetzie member
    Is this EPSDT or DD? We lost our EPSDT when DD got her trach and "needed nursing" forcing us to either use the nursing hours required by the tech or drop it all together. If you got DD, I'm going to have to bow down and beg you for tips, because we've been trying for this for over a year and even with all of the most severe categories the wait-list is huge. 
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  • MummyGruetzieMummyGruetzie member
    Btw. Have you guys followed up with immunology yet? We went the other day. Our levels are starting to go up a little bit, but our infections aren't going away so they still wanted to do immune therapy. Decided to do the antibiotics since the numbers had gone up some. I'm glad the numbers are going up, but I wish the infections would go away. :) Where are you guys in the whole process?
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  • realisticdreamsrealisticdreams member

    Ours is the ECDC waiver.  She is too young for the DD waiver (I think 5 1/2 here?) She said that we won't lose this, but if she needs an assisted device then we would apply for an additional technology waiver. 

    We follow up on july 5th.  All of her stuff should be back the week prior, but I think i'm going to try and hold out on bugging the nurse & wait until the appointment.  I will just be pissed if it's something serious & we still have to wait another week to see the doctor.  

    We are in the process of switching pedi's so i'm interested to see what his opinion is on everything.  The other one said she just keeps having multiple viruses but they don't know why.  

    Her last labwork at the beginning of June showed low neutrophils & high lymphocytes.  

    So basically, we had the initial appointment, did all of the labs they wanted (TRAP, FMF, other stuff) and are waiting for our huge follow up appt.

    =( sick babies suck.

    Are you in VA too?  The waivers are a bit different here. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • MummyGruetzieMummyGruetzie member

    We're in nova...(remember both of our girls saw Dr. M for neurosurg?--blech!). The tech waiver isn't for technology in the typical sense--no ipods or AAC devices here :) This is for kids who have severe health needs that require machines. With our g-tube we qualified for nursing through EPSDT, with the g-tube and trach we qualified for Tech. and lost our ability to use EPSDT or ECDC, since those were consumer directed and the hours were meant to be filled by someone with less training. I get it from a legal standpoint, but it sucked for us, because with the nursing waivers you pretty much can't take part-time hours and the nurses specifically said that they wanted to do all of the care, but I didn't want that for attachment reasons. (And they weren't doing a good job). I needed someone PT who was there to help or give me a break for a few hours, not take over my whole role as a Mom. Without the nursing hours, you get dropped from Tech. This is where VA gets lame. They have so many "all or nothings" that its actually very unhelpful. And you're right it wasn't the DD waiver we applied for--that has a minimum of 6 yrs. It was the MR/ID. Didn't mean to hi-jack your thread. . .

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  • realisticdreamsrealisticdreams member
    imageMummyGruetzie:

    We're in nova...(remember both of our girls saw Dr. M for neurosurg?--blech!). The tech waiver isn't for technology in the typical sense--no ipods or AAC devices here :) This is for kids who have severe health needs that require machines. With our g-tube we qualified for nursing through EPSDT, with the g-tube and trach we qualified for Tech. and lost our ability to use EPSDT or ECDC, since those were consumer directed and the hours were meant to be filled by someone with less training. I get it from a legal standpoint, but it sucked for us, because with the nursing waivers you pretty much can't take part-time hours and the nurses specifically said that they wanted to do all of the care, but I didn't want that for attachment reasons. (And they weren't doing a good job). I needed someone PT who was there to help or give me a break for a few hours, not take over my whole role as a Mom. Without the nursing hours, you get dropped from Tech. This is where VA gets lame. They have so many "all or nothings" that its actually very unhelpful. And you're right it wasn't the DD waiver we applied for--that has a minimum of 6 yrs. It was the MR/ID. Didn't mean to hi-jack your thread. . .

    No hijacking here!  lol sorry, I didn't remember you were from VA, I'm surprised I can remember enough to function these days.  (You may have read that I've lost my cell phone twice, purse once & wallet once) since Morgan was born lol.  

    I figured the tech waiver was for kids who needed medical devices, she made it seem like we could still keep the ECDC and add the other waiver, but she was just the nurse & didn't know a whole lot.  She said if she ever needed a feeding tube, it would fall under the tech waiver.  

    My friend's son is 17 and he has severe CP, she said VA is one of the lowest states for being 'disabled friendly' and even worse for children.

    My gramma keeps telling me not to count my chickens before they hatch with the waiver, but I don't see what could happen at this point.  Who knows though.

    I would think you should still be able to do a consumer directed hire, if that's what YOU were comfortable with, but I do see where legalities come into play.  Did tech come with full medicaid as well?

    This is all so confusing lol, I actually got all of my info from a blog that was super helpful, but it only explained ECDC.   

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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