I've been paying attention to the stats on my blog and what key words people are typing into Google when they end up here. Often, and every day, they type in "SSDI" or "Social Security" and "Schizophrenia or Schizoaffective" or "how to live on SSDI".
I have, in fact, been getting Social Security Disability benefits for about 12 years. I also work part time (factoid: you can get SSDI and also work part time), and I have been reviewed by the Social Security Administration numerous times. So I do, actually, have some advice for you.
If you need to apply for SSI (Supplemental Security Income) or SSDI (Social Security Disability Income), this will be a primer for you.
1. Be detailed. Whenever you are filling out forms for Social Security utilize the extra space at the end. The way to utilize it best is to attach type written pages, not to write in your own messy handwriting. Use this space to tell them every doctor, therapist, social worker, or hospital you've been to and the dates when you were there, and the reasons you were there, and the treatment you were given there.
2. Get addresses and phone numbers for every medical office you ever enter, and include them in the extra space. Make sure to put it in writing that Social Security has permission to obtain your records from said places.
3. Don't trust Social Security staff to do any of the footwork for you. You will have to do it yourself. If you have copies of your medical records, send them those if you can. Don't worry if you can't do this; most people can't afford the expense.
4. Consider hiring a lawyer when you have to appeal the second or third time. I wouldn't hire a lawyer for the first denial. Basically everybody who applies gets denied once, except people like me who have extensive hospital records. The lawyer can't charge you unless you win, and usually with a lawyer you will win more money than what you can get by yourself. I would have had much more in backpay if I had gotten a lawyer.
5. Don't waste your time talking to them on the phone, unless you make sure to get the name of the person you are speaking to and write it down.
6. Don't waste your time sitting at their office, unless you are prepared because their goal is not to give out more money to people. Their goal is to give out less. You need to be confident that you are, in fact, disabled, and have proof if you go to meet with them.
7. Describe every day as you would describe your worst day. If there are days when you cannot get out of bed, tell them about that. Don't ever assume that they will realize that you are debilitated because they will know all about Schizophrenia already. Assume they know nothing. Act accordingly.
8. If you ever get a part time job, after you win your benefits, make sure you don't make $900 a month, or you'll lose your SSDI. You can obviously choose to go off SSDI but most people wouldn't go through the trouble of begging for a poverty level income if they had a choice about it, so I am assuming that you are really disabled if you are reading this. Often SSDI and usually SSI are not enough to live on. So you may have to work part time. Working is also good for your self esteem and gets you out in the world.
9. Be prepared to be hassled, if you win the benefits. You will get reviewed. Every time you get reviewed you are being threatened with losing your benefits. Be prepared to be nervous. But you will get through it if you follow these instructions and write in detail why you are disabled and what your symptoms are and how they affect your ability to work. Make a chart with Microsoft Word and give them a handy outline of your symptoms. If they should require you to get medical records, proof of bills paid and proof of medications you bought or the past six years, just do it and don't bother arguing with some peon on the phone over whether you should have to do it. They can't help you.
10. If you go back to work full time, you can stay on Medicare for a limited length of time which most of us would desperately need to be able to work full time at all, so remember that and take advantage of it.
11. Realize you're not worthless. People without careers or jobs are not worthless human beings. You have value, talents, skills, and assets, Everything in life isn't about what you do for money. If you need disability benefits, you should not feel ashamed.
12. Learn to live on a strict budget. Go to food pantries if you need to. Applying for SSI is also how you apply for food stamps. Do that if you need to. Buy everything at discount stores. Shop around before making any large purchases. Utilize Craig's List for free furniture. Go to thrift shops. Avoid the malls. Social Security doesn't give anyone enough to live on; it's a poverty level income. Remember that you cannot eat at restaurants every day when you are in poverty. Apply for Lifeline telephone benefits. Apply for subsidized or HUD housing. Get a roommate. Rent a room in someone's house.
14. Utilize your local community mental health center. Ask for a case manager to help you. These advocates can be valuable when you are dealing with Social Security and can help you navigate the rough government waters you're headed into. Most mental health centers have case managers, and often you have to ask for one before they are assigned to you.
15. Use legal aid if you need to appeal and you can't afford a lawyer.
16. Don't give up. It can take years to win Social Security benefits. This is your survival at stake. Fight for it, and don't quit. The system is designed to make you give up before you win. Don't give up on yourself.