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When joey was first dx'd the social worker told me "apply for SSI, this is a long road and can get very expensive you will need it." Well somewhere in my haze I did apply and over the past 5 months have been waiting for word. I've given them everythign they asked for and have waited and waited fully expecting a denial.
Today they CALLED me and said "Joseph's review was found in his favor" meaning SSI has been approved! With all the added expenses we've had (especially stuff insurance won't cover like gloves and face masks) this is a HUGE help! And well, face it, we moved to be closer to the hospital so that Joey could come be home with the family at the very beginning and frankly this place is a "nice dump", if there is such a thing... LOL
Now we will have a better chance at getting a good place close to here but better than here.
Congrats. Check your state requirements, because if you qualify for SSI - you may qualify for medicare after a certain amount of time (it's 2yrs in IL). We don't get SSI or any other assistance because of income limits. However, when Kyle was in the NICU, he was under the automatic weight minimum to draw. In that case, the hospital collected the SSI (we received a $30 check each month, and they got around $500). In the paperwork they listed the qualifications, that included if we were on it for 2 years that we could convert him to medicare. It would have been really helpful for us, but we were dropped once they did they re-reviewed the account and he was out of the hospital.