My doctor doesn't get AIDS disability

This topic is controversial. I have fired primary care providers (several of 'em) for not understanding this stuff, which I consider to be rudimentary information. Why so drastic? Because of the role disability benefits play in my life. I am too sick to go to work for someone else, but not too sick to be working for myself several hours a week. I need my disability benefits. But I haven't had any OIs for a couple of years now. So the prevaling medical opinion would be that I am no longer disabled. The prevailing medical opinion would be wrong.

For all practical purposes, once you have an SSDI disability determination, you are totally and permanently disabled. The only factor that affects your continuing eligibility for SSDI is whether you are [b]actually[/b] working and earning more than $860 per month (SGA). That's why they used to lead with the Work report. If you're not working, your disability continues. If you are working, they check your medical eligibility.

If you do return to work, you will still draw your regular benefit for 12 months (9 TWP + 3 grace). For the next 3 years, you are eligible for your benefit for any month in which you do not earn SGA (substantial gainful activity, currently ~$860). All you have to do is let 'em know.
Furthermore, ( ;D ), during the first 5 years after you return to work, if you become too sick to work due to the same condition (HIV infection), all you have to do is submit a special application--no medical review. They used to call it Easy-on.

It works this way because your disabling condition is HIV infection. The infection must have seriously damaged your immune system, as shown by the symptoms you have, and OIs you've had. But, the OIs are not the disabling condition, the underlying HIV infection is; so recovering from an OI does not change your status to "no longer disabled." Neither does an undetectable VL and rising CD4 count, since you are still at risk of new OIs.

It is nearly a certainty that your physician either does not know this, does not get this, or does not accept this. It falls to you to insist that they get it right.

Physicians usually don't understand that there is a difference between a medical diagnosis of "disabled," and a legal determination that one is disabled and entitled to benefits. They absolutely determine the former. But their contribution to the legal determination is in making a good diagnosis, and ordering the right tests. Their opinion is sometimes considered, but it can usually be argued against if the facts support disability. Docs are given deference, but it is a far cry from the treatment they receive within their own community (clinics and hospitals). They don't get it, and they don't want to hear it.

So you have to stick up for yourself. If you aren't working, you need to be on benefits. If you are working, you don't need them any more. If your doc doesn't support this, why not? Does s/he have your best interest in mind?

It is very frustrating for me personally, because the last 5 docs I've seen got sacked (by me) for some various display of stupidity or ignorance regarding AIDS disability (which complicated my access to needed benefits), and professionally because I see the damage that is done to folks when benefits are lost.

The above applies to SSDI only. SSI has different rules on when you are disabled. LTDs vary with each particular policy.

Feel free to share your story about your doctor not understanding your needs when it comes to disability benefits.