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auntie

realisticdreamsrealisticdreams member
in Special Needs

I think you live in PA, can you please give me any info you have on medicaid waivers for your state?

It's for a little boy who has the same issues that Peyton does, walking is difficult for him, he also has bowel/bladder issues and is starting to be cathed soon, etc.

Thank you for anything you have! 

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: auntie

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    realisticdreamsrealisticdreams member
    image-auntie-:

    It's been a while since I did this, medicaid didn't offer us access to the sorts of services we needed.

    Non-means tested medicare is called  "Teddybear Coverage" in PA and last I heard there was no wait list if the child qualified. She should call her local Public Assistance office and be prepared to act quickly, the turn around for applying is a short window.

    Once accepted, she would get a medical card for her son. Most people are required to join one of the HMOs offered. She might contact her kid's team to see which insurance they accept. In some communities it's hard to find docs who will accept the medicaid HMOs- especially PCPs and behavioral health professionals.

    Thank you so much!  The "teddybear coverage" term is what I was looking for.  I know he has PT 3x week that isn't covered plus he goes to spina bifida clinic, urologist, neuro, neurosurgeon, etc.

    Thank 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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