I applied for Social Security Income(SSI) last year for Elijah. I was really hoping to get medicaid. Everyone told me, "Oh he is deaf, you will be able to get it for him." Well he didn't qualify due to my income and the child support his dad was paying. We then applied for medicaid and again did not qualify. I didn't even like applying in the first place, but I have paid into the system for a long time and any assistance with medical bills would be helpful.
I am now applying again for SSI. The gentleman I spoke to on the phone who took the information was very nice. He told me that Elijah again would not qualify and would send me an informal denial. I have an appointment for April 5th where Elijah will most likely be denied again. This time, however, I did complete a Child Disability Report online and mail in release forms to the Social Security Administration. Someone from work told me that I should appeal once Elijah is formally denied SSI, because they then start to look more closely at his disablities.
Elijah is deaf and wears cochlear implants. He is still language delayed, but has made so much progress and is really doing well. I don't consider this his main disability anymore. Elijah is also asthmatic and can get very sick very quickly. He takes four medications for his asthma. If he gets sick he takes even more meds. Elijah also has tourette syndrome, OCD, ADHD and anxiety. I consider these four to be his main disabilites at this point. They affect his daily life more than anything. He is on six medications for these disorders. His medications is really what gets to be so expensive. It is also the TRYING of new meds for his tics that can get expensive. You try the med, it doesn't help and then you are out the money. There is no easy way to know what medicaiton will help him with his tics. The doctor bills are not too bad. I would keep Elijah on my health insurance and use medicaid as a secondary insurance.
The other expense that we do have is warrantying Elijah's cochlear implant processors. We did get the warrnty for half price last year, but won't be so lucky this year. The warranty is due in October and will cost around $1500. We will also have to decide if we want to warranty his FM system. There is also a new processor, the Nuclues 5, that is out. It is not backwards compatable to his intenral equipment but will be in the next year, if not sooner. I am hoping that our health insurance will pay for the upgrade, and then he gets a new three year warranty on them. We do have his body worn processors we can trade in towards the price of the Nucleus 5, but without insurance paying part of it, we won't be able to afford the new ones. I wouldn't even push for the new ones, except for the warranty and they are considerablly smaller and would fit Elijah's ears better.
I never even applied for SSI for Elijah prior to my divorce and probably wouldn't have even tried if he were just deaf. My other son is also asthmatic and ADHD. He takes several meds for his asthma and one for his ADHD so his medications add to the cost of the household. All SSI looks at is your income. They don't really look at the maintenance of the disabilities are how they affect daily life.
Elijah is doing well now, but it has not been an easy road. In looking back, the deafness has been the easiest thing to deal with. The asthma was a learning curve for me but he is older and we have a handle on it. He has only been diagnosed with Tourettes and OCD since July of 2008 so we are still learning a lot about those two things and how they work with his ADHD.
There is talk of a medicaid buy in program for children that is in the works, but I don't know when it will start. I was told in September of this year, but now it looks more like 2011 before it is put in place.
I hope it doesn't seem like I am looking for a handout, but rather just assistance so I can provide the best treatment for my son.
THE SHADDOX BOYS
Jacob and Elijah Shaddox are brothers. They live with their mom, Mary, who is the writer of this blog. Jacob is 19 and is now four inches taller than his mom! He also has ADHD and gorgeous red hair. He is a freshman at a technical college studying computer maintenance. Elijah is 15! He is in 9th grade and he is not in ROTC at his high school. He also had red hair, but it is lighter and not as thick as his brother's hair. He is hearing impaired(auditory neuropathy) and wears two cochlear implants. He also has tourette syndrome, ADHD, OCD and anxiety! Mary just started her 25th year as a teacher of the deaf. She is also in her last semester of graduate school to be a diagnostician! She will graduate in December of 2015!