How to change SSI Disability policy

My son has Treacher Collins Syndrome and receives secondary medical insurance though his disability determination. I am in the process of defending his claim.
When I showed up to the video conference ‘hearing’ with the determination officer, they set me up at one of 14 ‘windows’, among all the other 60+ people in the waiting room. I was 4 feet away from the person at the adjacent window. ALL of his extremely personal medical information, including both of our social security numbers, are available to anyone who is listening. Would this be a HIPAA violation? I refused the hearing and we rescheduled for a different location with more privacy.

When I asked how to file a grievance about this new policy, they said my only avenue was to reach out to my congressman.

Can this be true? If I’m serious about fighting this, what should be my first step? What kind of lawyer should I contact? Are there any resources I could take advantage of?


Have you reached out to your congressman/Senator? It seems to me that would be the first step.

If you plan to sue (otherwise, why would you need a lawyer?), you will have to show that you have been harmed is some way by their policy, not just that you could have been harmed. Were you harmed? IMO, you did the right thing by rescheduling since you did not feel secure.

That is unlike anything I have ever heard of (and I work in an SSA hearing office.) I know there is a recent push to have more hrgs via video, but have never heard of a situation where multiple hearings were heard at “windows” in the waiting room as you describe.

It is possible that you are not using the terms I am familiar with to describe where you are in the process, and what you were taking part in.
-Has your child already been found disabled by SSA and has he been receiving SSI?
-Is this a continuing disability review?
-Is this “hearing” with an ALJ or with a Hearings Officer?
-Is this an initial appointment with a claims representative?
-Where (city/state) did this occur?

I’m awfully confident that no SSI “hearings” (as I understand that term) the manner you describe.


This sounds like a request for professional advice. It’s our policy to keep such discussions in the In My Humble Opinion forum, to emphasize the fact that we have no way to vouch for the professional qualifications of anyone answering, and that this board is not a substitute for actual professional advice. I’ll move it over there for you.

Does HIPAA legally apply to the federal government?

I don’t know about these bizarre-sounding hearings , but HIPAA only covers certain entities - health care providers/ health insurance plans/ healthcare clearinghouses and their business associates who have access to protected health information. ( for example, an independent medical transcriptionist who is hired by a hospital). It doesn’t apply to the patient and it doesn’t apply to any other entities. It also doesn’t mean that those other entities can’t require you to disclose information. For example, HIPAA does not prevent your employer from requiring you to provide a doctor’s note when you are absent.* And if your employer chose to post that note on a bulletin board , that would not be a HIPAA violation **

From your description, it’s not at all clear where you are defending his claim - but chances are, it’s not an entity covered by HIPAA

*Assuming you don’t work for a covered entity which was involved in your care.
** It might violate some other law, but not HIPAA.

as someone who went through every stage of this up to the admin law judge here’s my advice

first off find legal help Nowadays there’s SSI advocates a plenty who only get paid if you win and cannot legally charge you more than 1500 dollars I waited until the 3rd step in the process because 20 years ago ssi advocates were a rarity and i had to call the state bar assn to find the lady that helped me out

Don’t believe a word anyone on the SSI side says because they aren’t there to help you out and anything you say to them will be used against you … and whatever you do find the local office and do everything through them because the national helpline is clueless

Good luck

Hey - I think I found me a new sig! Should boost my cred when I venture over to GD, huh? :cool:

Thank you to everyone for the replies.

-He was found disabled and received SSI for 13 years until the middle of last year when
they decided that his life was no longer affected by his disability.
-I’m not exactly sure. The notice just calls it a “disability determination”.
-This is with a Hearings Officer
-Austin TX

I called an SSI Advocate and a lawyer and both said they were unable to help. I’m more than happy to keep calling around though if there’s a chance the two I connected with were not a good representation. Any suggestions where I should start besides just google?

I’m interested in changing the policy by pointing out how it violates people’s right to privacy. Is that the same thing as sueing? If so, I suppose my only recourse it to find someone who’s been hurt by this new policy?

HIPAA complaints go to the Office of Civil Rights. Complaint forms are available online.

As Doreen points out, however, SSA might not be a covered entity.

Depending on where you live, state privacy laws might apply. Here in Mass., it’s MGL ch. 66A. You could start with your state attorney general’s office.

If you read the notices you have received, I think you will find they said no such thing.

You say that you objected to the process that they offered, and they are providing a more private hearing. So what is the problem?

SSA is not a HIPAA-covered entity and SSA employees and hearing officers are not subject to state privacy law.

you go for a "redetermination test there’s 2 1 is at their doctors who put you through a physical of sorts testing you to see if you pass their conditions for the physical disability your claiming
the other is a "mental test " and that could be anything from having a psychologist sit in front of you with a flip book to doing various things like puzzles and things with blocks " if your above their threshold on either of these you get 1 more check maybe 2 and its "goodbye and good luck "