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October -December 2006
Social Security Process & Rally Day @ State Capitol
I cannot explain what our family is going through right now. All that running back and forth to the hospital was a journey that was so frequent that we got caught up in the lives of our twins. Grandma and Grandpa Mary and Harold took care of us all weeks on end. Maurice and I were like passing smiles and rays of hope as we passed each other on our way back and forth. Now we are having to deal with all that has occured. We watched little CJ go through misery as he fought for his life so many times. We had to remain positive and loving to one another. Our inspiration to keep going and to try to keep it together was because of our twins. We expect nothing but prayers and love from family, friends and everyone out there. We ask for patience while mommy and daddy work through their lives. The boys are doing well. Thanks for all support. Because of you, our twins are happy and healthy.
October 7, 2006 (Denial of Social Security)
DID YOU KNOW THAT THE GA. DEPT. OF LABOR HANDLES OUR CHILDRENS CLAIMS ONCE THEY LEAVE SOCIAL SECURITY? How in the heck could the systems link to one another?
We have once again been denied SSI benefits for CJ. I called pretty often in the last 3 months to SSI because I wanted to check on the status of his claim. Every time I called (up until the last two times) I was told that the claim was still pending. I was also told in a round about way that there was no need to call back unless I had not received any information by Oct. 24, 2006. I was also told that CJs' claim was sent to the State of Ga. (Ga. Dept. of Labor Division) on June 26, 2006 for consideration. I called SS again to check the status of his claim on Tuesday Oct. 3rd of last week and all of a sudden we received a notice in the mail (Oct. 7th) sent to my old address stating he was denied benefits because he was not disabled. Notice, I called in and changed my address a few weeks after we moved back in July 06. I was told that the contact information was changed in the SS system with the new address. You have to verify your address every time that you call them.
Mistake by Social Security that caused CJ's claim to be denied without due process:
The reason for CJs' denial according to SS is written below quote for quote from the official denial letter:
You said that he is disabled because of short gut syndrome. In order to more thoroughly evaluate Clarence's condition and how it affects his functioning, we wrote to you asking you to contact us as soon as possible to provide us with information regarding Clarence's most recent medical care. You have not responded to our request. Without the needed information, we are unable to find that Clarence is disabled within the meaning of the law. The evidence currently in his file is insufficient to make a finding that he is disabled.
"What letter?!" "What are they talking about" is what Maurice and I kept saying to each other. All I could do was cry. We received this letter on a Saturday so of course it ruined the entire weekend. I have never received any information from SS at either address with the exception of the denial letter to this date. This is their way of making me start all over again with the appeal process and once again be denied benefits.
My visit to Social Security to get answers
I went to my local Social Security office with CJ feeding tube and all. We sat outside the building for at least an hour waiting for them to open. I was about the 25th person in line. I was able to sit while waiting and got up once the doors were opened. Once called by number the SS rep. gave me a reconsideration form and told me to put it in the mail when it was completed. I asked the rep. about the letter that I never received that denied CJ. "There is no letter in your file" she stated. I refused to leave the SS office until I spoke with a supervisor about the mistakes that were made. "There is no-one here for you to see" she stated. Well, I am not leaving until I see someone else about this I said. "Have a seat and I will get someone for you" she said. By this time I was on fire and I was not taking no for an answer. I was called by another rep. and she was not a supervisor and I of course had to repeat myself to her about the letter needing additonal information. This rep. went to the back and about five minutes later produced a letter to me on The Ga. Dept.of Labor letterhead. This letter had contact information of the original person who denied CJ. I was given yet another copy of reconsideration papers to fill out. At least she highlighted where I needed to sign on the forms and provided me with an envelope.
Phoning the Rep. that denied CJ benefits
I rushed home to call the rep. that had handled CJs' claim. When I called the rep. she just seemed confused that my address had not been changed in their system. I verified my address with her and it was the old contact information in her system."When you called to check on the status of his claim; why didn't ss give you my contact information"she said. I was refused your contact information from SS I said. (All parents should have a direct contact person that will be helping to make the final decision with their childs SS claims-especially when the computer systems do not link together) It was confirmed by this rep. that the systems do not link to one another. "What was the additonal information that was needed to process his claim"? I said. "The Drs. wanted to know if Clarence still has a feeding tube" she said. "You are kidding me right?" I said. "No, and they wanted to know about another surgery that he will be receiving."she said "His last surgery will not be until Dec. 2006" I said "The Drs who were determining CJs' claim could not have known about his condition to ask a question about his feeding tube. Why didn't the Drs. call CJs' Dr. directly to confirm that he was still on the feeding tube?". "I am so sorry Ms. Barnes but you will have to do the re-consideration, I no longer process your claim, it will go to someone else."she said. I thanked her and she changed my new contact information in her system.
Filing for Reconsideration
October 13th, I filed papers for a reconsideration for CJs' Social Security. It was such a repetative process. I got letters from his Drs. to avoid such a long delay from SS. I refuse to give up on my son and I will never give in to the unnecessary mess with Social Security. Its just a waiting game now. Oct. 20th, I called SS and CJs' information was not yet in their system. Nov. 3, I received a call from SS confirming my current address and letting me know that CJs' paperwork was being sent for reconsideration today.
CJ is still in need of SS for these services:
PT (Physical Therapy) Still cannot stand on his own, cannot walk
OT(Occupational Therapy) Still struggling to eat anything other than smooth textures #2 baby jar foods, and still has difficulty holding objects and will not put food in his mouth or even hold food in his hands.
ST(Speech Therapy) Started on Thursday Oct. 26. He says dadda, hi and hello. This is the extent of his speech with the exception of babbling.
He still has one outpatient surgery left the end of this year. This does not include the fact that CJ still depends on his daily nutrition through the feeding tube. He is on feeds for at least 8 hours per day if not longer. When he refuses to eat by mouth, we have to give it to him per syringe or feeding pump.
Parents here in Ga. spend more time filling out paper work and being turned down benefits in Ga. more than we do taking care of our babies.
Please just continue to pray for our family and keep passing along the site for us.
We hope to see you at the Rally Nov. 4th in front of the Capitol to help support our children. Please do not forget to vote. It will make a difference to our babies
November 2006
Nov. 4th, Rally Day. It was just awesome to see so many supportive famiies at the Capitol steps. The speeches were just moving and I had to keep myself from crying before my speech. We met some really great people. Gov. Barnes was there, Lt. Governor Mark Taylor was in attendance and others. The boys had a really great time and did awesome on such a cold morning. After the rally went went home and just crashed. We were just so very exhausted. Nov. 5, We had to put another NG in CJ. The ends keep poping off. We got the boys to bed by 7:30pm and they went right to sleep. Nov. 23, Mommie and the babies went to Columbus. We had so much fun. The boys woke up every morning to their grandma, grandad and great grandma. They had lots of fun with their uncle Keke. Of course they talked a lot more and they began to explore a lot more. We returned home on the weekend before CJs Drs. appt.
December 2006
What a crazy month. We had to really pray and believe in faith to get it through this month. CJ's appt. with Dr. Cole was pretty good. Dr. Cole wants him to eat a lot more table foods. We have a new OT and she is awesome/(Kim) He is already beginning to eat oatmeal and try other textures. CJ had his very last surgery on Dec. 20th, 2006. My mom and dad came up to help. Thanks so much mom and dad. We know that it is a true blessing to have your parents supporting you, especially through all of this. Our Xmas was good and we were truly blessed. We did not expect help from anyone and Maurices family stepped in and just made our Xmas a great one for the boys. Dream House sent us gift cards that not only gave us enough to buy the twins $50.00 worth of Xmas, but it also supplied us with a Xmas tree and dinner for the family.