Meds, Mind, Body & Benefits > Insurance, Benefits Programs & HIV

Getting onboard SSDi


First you need to be a US citizen and have worked jobs that you paid standard Taxes through. The more you worked and the higher your pay is the more you will get. Your benefit is based on time more than pay using standard benefit pay. It is a formula. I do not know it.

About Deductions that are Empty that I know a lot of gay men use to get more money into their pockets. When you do not have children you actually end up paying more in taxes. Empty Deductions destroy your Social Security Pot and the total amount you will end up with. It works something like this. For every dollar you put in your Pot Social Security puts in about 7 dollars. That is one reason foreigners love our system so much. Say you have 5 Empty Deductions now Social Security puts only about 4 dollars to your one dollar into your Pot.  It is bad because only work can inflate your Pot. Empty Deduction are Bad so use them only when you really need the extra money and then take them off.

Call the main number for Social Security and ask for a Case Manager. I do not think with all trouble and hoops I had to jump through I would have gotten onboard without my Case Manager. They really do help. But, they do not do everything. It is a lot of work.

Have every single Doctor, Clinic, hospital and everything else you were at for services for HIV in Perfect Detail as in Place Names, Names, Addresses, Phone numbers and Dates. At the first appointment with you Case Manager you can fill out Releases for information using all of your information. This can get things going fast. Keep all of your information in Written form with you at all meetings.

If they give you SSI paperwork say NO and ask for SSDi paperwork. Your HIV status Qualifies you for SSDi. Be firm. There are instructions in the front of the Packet that tell you how to fill out the paperwork. Read them. Then affix them to the back of the Packet. You must use Standard American Hand Printing to fill out the paperwork. They can Reject Hand Written Paperwork because most people can't read other peoples hand writing. Be clear.

It is all about good writing and putting ALL of your FEELINGS into what you write about. A person is going to READ what you have written about your Troubles and make a JUDGEMENT about you and the services you can get. Make it very clear to them about all of the PAIN, ANGER, DEPRESSION, WORRY, SADNESS, LONINESS, LOSS and everything you FEEL and have FELT. I used MS WORD to write out everything and then I condensed it and hand PRINTED it into my paperwork. Make them FEEL what you are going through. ALL NAMES, DATES and Things done Must be ACCURATE so that it matches your Records. They like to go get your Records. That is you can't hand them copies because they won't take them. You can ask if they will take them. Keep any Records you have copies of so you can keep your writings ACCURATE.

Getting DENIED!
You will probably get DENIED the first time submit your paperwork. The DENIAL LETTER has your Treasury Account number that is your RETROACTIVE money. The Date you first submitted your paperwork is the Starting Date for your RETROACTIVE Pay. The Last Date in the Denial Letter is the Date your paperwork CLOSES. If your paperwork CLOSES you will LOSE ALL of your RETROACTIVE MONEY.

Each Time you get DENIED.
You must find out WHY you got DENIED and CORRECT the problems and RESUBMIT your paperwork BEFORE your paperwork CLOSES. I rewrote everything at least once.
This is where having a CASE MANAGER really helped. You call them when you first get your DENIAL LETTER. In some cases they can help you immediately over the Phone or you make an Appointment.  Get the Answers and Rewrite what you need to and get your paperwork back in the system FAST.

DO NOT MAIL ANYTHING to the MAIN SOCIAL SECURITY ADDRESS. Why? It will take at least a month to get to an ACTIVE desk and be routed. Your DO NOT have a month. MAIL TAKES TIMES TIME!  A CASE MANAGER can RECEIVE in Person all of your paperwork by Desk or by Window. Your Doctors can do this to because all Doctor offices have front desks. Call your Doctor first and tell them you need something done. Hand it to them or the Front desk. I Hand Carried Everything to everyone. When you are faced with your Paperwork CLOSING this the only way to get things done. DO NOT MAIL ANYTHING UNLESS YOU HAVE TO!

DEPRESSION works only if you have a QUALIFIED person working with you for about two years or so. Have them write a LETTER about you and your problems and include it with the packet near where you write about your DEPRESSION being a problem in your life.


While I am sure this was intended to be helpful, I am afraid that there are several serious inaccuracies in your post.

For example, you do not have to be a US citizen in order to receive SSDI.
As you correctly stated, eligibility for SSDI is based (among other things) on the length of time over which you have been making Social Security payments and the amount of those payments. So you do not have to be a US citizen, but you do have to have made contributions to Social Security.

Also you should be aware that simply having HIV will not in and of itself qualify you for SSDI. You have to demonstrate that you are disabled and that you are unable to work as a result of having HIV - just being HIV+ is not enough.

I agree with MD  that simply an HIV diagnosis will not automatically qualify you for payments.
In my case, I had a 25 year solid work history where I paid in through my employers.
I did have severe depression and two cases of being placed in a mental health ward of a hospital because of horrendous side effects from Sustiva that produced thoughts of suicide and homocide in addition to hallucinations.
I had my partner help me in filling out the application very thoroughly with numbers, addresses and names of all the doctors I had come in contact with. Every question was answered in detail with full disclosure of my ailments and background illnesses.
I was deemed eligible for payments in a record 8 weeks with no questions asked. In addition to receiving a monthly check, I was informed that I would be eligible for Medicare in two years from the date I applied for SSDI benefits.
In the mean time, since I had no income, I was referred to service agencies which assisted with rent, utilities and because I took a copy of my application for SSDI, I was immediately given the full amount of food stamps. Many social organizations helped me stay afloat during my wait time and while it was a humbling thing to face, I did so with dignity and made it through.
It pains me to hear that many HIV patients have to wait for payments for years, but I feel it all depends on how thorough you are with recording every visit you have with all doctors and to be able to communicate your story with those who are there to help you. One good thing that MD mentioned was that you HAVE  to deliver your application and all relevent paper work to the SSDI case worker by hand....never wait on the mail as your app can sit on a desk for weeks before someone sees it.
It is a fight, but if done correctly, it can be a smooth one!!


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