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MummyGruetzie

realisticdreamsrealisticdreams member
in Special Needs
imagerealisticdreams:
imageMummyGruetzie:
imagerealisticdreams:

imageJenGK:
Have you looked at getting Virginia's EDCD waiver?  Z just qualified, and it provides you with money to hire personal care providers and to get respite care.  They do an interview that focuses on the level of care needed and whether the child can perform activities of daily life without assistance (it is mainly aimed at the elderly, so some of the questions make no sense for kids, but in a weird way it helps, because the answer is no, s/he can't do it).  One the financial front, they only look at the child's assets -- not yours -- so unless she has a trust fund, she'd qualify.  PM me if you wnat more details.

We have the ECDC waiver (we got it in July) but if the child has a nursing need it affects something.  I will have to read the book and DH is asleep so i don't want to wake him up looking for it.  

Right now my grandma is the provider, because she won't hardly stay with her much less a stranger.  I know we can keep the waiver IF the provider isn't doing any nursing needs.  Which she can't do anyway.  I don't know.  This just really sucks and now i'm going "what if they are wrong, what if the results are wrong"...yeah i'm getting all kinds of confused inside my head.

If there are there are nursing needs beyond ADLs, you will need to do EPSDT. There is no wait list for this. Just the hassle of finding a company that's easy to work with and a nurse. The agencies sometimes have waitlists for the nurses depending on what level you need-LPN, RN, etc. Beyond EPSDT, there's also the tech waiver. You pretty much need a trach or vent for that. Its interesting-we actually qualified for more hours with the EPSDT than we did when DD had her trach and had to do the Tech. EPSDT is pretty good hours wise. They'll also do respite hours in addition to your "nursing". Your hospital social worker should be able to set you up with the EPSDT information.  

So we would have to transfer to the EPSDT?  Does that include full medicaid coverage?  We don't have a hospital case worker =(   

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: MummyGruetzie

  • MummyGruetzieMummyGruetzie member

    I'll PM you. 

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  • realisticdreamsrealisticdreams member
    imageMummyGruetzie:

    I'll PM you. 

    Thanks, sent you one back as well. 

    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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