Dealing with SSI

Today I was doing some research online and I seen they will be expanding the Compassionate Allowances list! If you are one of the unlucky parents who have had to deal with SSI or have to go thought the process of SSI it can be a real struggle. We decided about 2 months after Gabbys birth it was time to apply. We did get denied right away.(With in two weeks) I put in for an appeal and was waiting for an answer then was informed they were going to put Gabby through on a temporary pass until we got notice of was going to happen next.We got her SSI check for two months due to the amount of time we were in and out of the hospital and the expense (October 2009 and November 2009) Then with out any warning they pulled it back again. Saying her shunt surgery had made her "brain grow back". I just did not understand. If the deciding  people were truly educated on her, and her disease they would know that a brain cant grow back. In January of 2010 I found out they were going to be expanding the Compassionate Allowances list. After some research I found that Walker Warburg Syndrome was on it. I called up our SSI caseworker(At the Local office in Greensburg, PA) and he informed me that since we had applied before they were going to add it that it did not apply to Gabby. Or we the choice we could restart the process again and loose any benefits that we had apply for with the first application. I just did not understand how or why this could be possible.If they are going to be adding it should you not then get it?  Normally a person would go through 4 appeals at the local office level then it would get sent off to be heard by a judge at the main office (ours was in Johnstown PA). Well in Gabby's case they did one denial then sent if off the the main office.(knowing her genetic disorder was on that list it was their easy way out, If we would have had our second hearing at our local office they would have had to accept it) When we received the letter it informed us our wait was around 4 years to get into see the judge. I was devastated. We were a two income family, that was now living off John's unemployment. (John lost his job 7 days before Gabby's birth. At the time we did not see what a blessing it was) Well after many hours of contacting the main office where our hearing was to be, this very nice guy "Mr. Shingles" Not his real name. Told us about pleading finical hardship. He had stated if we did plead finical hardship they have 30 days to get us in for a hearing. Pleading finical hardship means submitting paperwork showing that your gas, electric, water has a shut off notice or paperwork showing you are behind on rent/mortgage payment.With a letter on how this is affecting your life and how you are going to start loosing your home/or the main necessities to run it will be enough to get in front of a judge. That is exactly what we did, Pleaded finical hardship, I sent in a shut off notice for our electric, and gas. Then I also sent in several letters attached with her Genetic report and several letters from our Doctors We also included pictures of Gabby and in in her equipment. Normally if your child's disorder is on the Compassionate Allowances list you will never had the need to be seen in front of the judge. You will get an approval letter with in two weeks (this is how I case worked) We had got approved. It was 3 weeks after her first birthday. So in all we did spent about 9 months getting her SSI. I did it all with out any help from a lawyer. I spent hours preparing paperwork, submitting paper work and several trips getting everything in order with our doctors. Most family spend years waiting to get in front of the judge. If it had not been for "Mr. Shingles" we would have never known to apply for finical hardship and our wait would have been that 4 years. Most family's don't know this exist. Each state is different and we currently live in PA when we did ours. Now we live in Ohio. I hope this information is able to help someone who is going thought the battle, with a medically fragile child. It now provides me with the ability to stay home and raise her. Its cost affective to the insurance company's as well. They don't have to pay for a nurse to come in and take care of her. In the state of Ohio there is also a program called BCMH. This is a program for family's who make to much money to qualify for medicaid with medically fragile children. Its a form of medicaid, but with higher income limits. In many states they offer some form of this. Its just about digging around to find out the correct information. If any other parent lives in another state and can add some information in the comments below please do. The more information that is out there for parents to help them the better!
Here is the link with the new compassionate allowance list:
http://www.ssa.gov/compassionateallowances/conditions.htm
~ Maria Roddy