It dawned on me recently that I may know much more about being disabled that the average person. I am very fortunate to have a mother who is a former special education teacher, and she has taught me so much. I thought I could share my wisdom, but I would like to remind you that I am not a doctor or a lawyer, so please use the advice at your own discretion.This first section will be about Social Security Disability, and my next post will be about more general illness issues.
Social Security Disability Apply for social security disability as soon as possible. Even if you think you're not actually sick enough to get it, apply anyways. Social Security is known to deny people pretty easily, but once you are approved you get back-payments from the date that you originally filed. I know that I personally did not believe I was that ill, but my mom pushed me to apply, and lo-and-behold I really was sicker than I wanted to admit. The day I was approved was one of the most difficult days of my life; before then my brain would not let me believe this illness was permanent. Once the shock wore off I realized being approved has turned out to give me a lot of freedom (I don't have to rely on my mom financially), so I am thankful that she pushed me to do it.
I was denied the first time I applied. I was mostly blind and had just had 2 very serious brain surgeries. I believe I was denied simply because I was 21. I hired a lawyer for my appeal, but I strongly caution others not to do that. I have learned you don't really need a lawyer until you get denied twice (a social security employee actually told me that). My lawyer got 20% of my back payments along with some other smaller fees, and he didn't help me at all.
If you are under the age of 21 and have a parent who is on disability you are entitled to benefits under them, and you will get half of what they get monthly. For example, if your disabled mother gets $2000 a month, if you become disabled you will receive $1000 a month. This was put into place because by the age of 21 not many people have worked enough to accumulate social security credits to actually earn disability payments.
Every disabled person on social security comes under "review" to make sure your condition has not improved greatly. If you are "very likely" to get better they will review you after 18 months. If it is "possible" you can get better they will review you after 3 years. If it is "unlikely" you will get better it is 7 years. If you are young (under the age of 40ish) you will most likely be reviewed every 3 years, unless your disease is terminal. The process is tedious and the questionnaire takes forever to fill out (they ask you for every doctor you've seen in the last year, your medications, what you can and cannot do, etc.).
You do not qualify for Medicare until 3 years after you applied for Disability. Once you do start getting Medicare it's about $100 a month that is taken from your payments. However, if you are considered "low income" (which most people on disability are) you can apply for Medicaid to pay that fee for you. This has been so helpful for me because I get so little money every month I wasn't going to be able to pay for Medicare. Medicare is my secondary insurance, and in most cases actually pays for my co-payments.
Lastly, when dealing with Social Security make sure you do three very important things: 1) Keep a record of who you talk to and when, 2) Make copies of all the forms you send to them because they do lose things, and 3) Bring someone with you when you go in for interviews (it is a stressful process and it's nice to have someone to help you tell the whole story).