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SSID

StillharborStillharbor member
in Special Needs
Has anyone dealt with Social Security Disability for Down's syndrome kids?  Their website says DS kids qualify for SSdisablilty, but when MH called about it, someone said that it was conditional on our income, but no where on their website does it say that.  Any advice with dealing with them?
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Re: SSID

  • d.fd.f member
    I would call your local Arc. I know my local Arc has a ton of information and resources that can help.

    DS 09/2008

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  • realisticdreamsrealisticdreams member
    This is the link for the income qualifications.  We qualified for a verrryyy short period of time when we were initially approved, and her check was seriously like $3.  I didn't even know we would get money we just really needed the medicaid as secondary.  

    https://www.ssa.gov/ssi/text-child-ussi.htm

    Once dd2 was born, we qualified again for a short period, and now we are still paying them back.  It is 100% a hastle, and our local office, after moving, was NOT easy to deal with.  I did what I was supposed to do every week and 6 months later they would get around to entering stubs and say they didn't have half of them.  

    If your income is too high, you should look into what is called a medicaid waiver (even if your income is not, STILL do this.)  What state are you in?  Also if your child is on your regular insurance right now, and you qualify for medicaid via SSI or the waiver, some states have a program called HIPP as well.  They will send you a check each month for the cost of your premiums because it is more cost effective for them if your child remains on a primary insurance plan that has a cap.

    If you have any other questions just let me know!
    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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