Help for *** SSDI *** NOT SSI Please? (Long)

Pam R

New Member
Here's the history: (Questions at end)

My husband has had SSDI since 1999 because he's in end stage liver disease. At the time of application (we had all gone into the office), my son and my self inadvertently applied at the same time.

We all 3 have received checks each month since then. My son because he was a child of a disabled father; myself because I was a stay at home mom of said child.

I've known for a long time that MY benefits would be cut off when he turned 16, unless he was determined a disabled child. So back in May of last year, I went down for what I thought was a SS*D*I appointment to get a disability dtermination for DS so I would not be cut off as his caretaker.

Also, I had discovered that there are precious few services for a child who is not in the school system. I was hoping that a disability determination from SSDI would open doors for him. (I know all about IEP, 688, etc. but seriously do not want to take on our school department.)

It turns out the person who set up the appointment set it up as an *SSI* appointment and of course we were turned down due to income, with no look at medical records, only financial.

I was told to reapply 3 months before DS's birthday, on December 1. So I made an appointment for December 4, 2006 and duly filled out, extensively, the applications and appeared.

The man who was to take the application mentioned he was doing, again, an SSI application, when I had specifically requested a SS*D*I appointment. He stopped right there, saying he ONLY did SSI and went to find someone who could do a SSDI application.

He came back with someone he said was the SSDI supervisor and she would take the medical part and he would finish the other part. She took all my info, saying it was the most complete application she'd taken in a long while.

In the middle of the application, DS decides to act up, objecting to my answers to her questions and being disruptive. husband finally took him out to the car.

I had asked for a copy of some form she had filled out, but in the chaos of DS, never got it. I found out later I had come away with no names of either the man or the supervisor, in addition to no copy of the form.

I was told to check in February for the status. I started checking in early January. (I've seen the posts about the 800 phone number now, but not back then.) I called the 800 # because it's so impossible to get through in our local office.

I was told that the file showed no indication of any application being filed, or any disability determination going on. The man said he would send an inquiry to the local office and that should spur some sort of activity. Nothing happened.

The beginning of February I called the 800# and again, there was nothing. The woman who answered said that there was nothing in the claims system and she was going to put something in indicating a pending file, in the local office. She said this should have been done in January. I should hear something in 7 days. Nothing happened.

The middle of February I finally got through to the local office and asked for the SSDI Supervisor. I was connected to a woman who identified herself as a supervisor. I explained the above and asked about the status of the application.

She asked for a description or name of the woman who took the application. I had a vague description and no name. She said, well, that description did not fit her, and she was the ONLY woman supervisor in that office.

But she had a good idea who it was and would call me back. She did call back 3 days later and said that the woman who had taken our application still had it sitting on her desk, untouched. She would be sending it to disability soon.

I called today, the 800#. Nothing in the file. I have, of course, been cut off by now as DS turned 16 yesterday. The only thing in the file is the cut-off letter I received the end of February.

So I tried, unsuccessfully to reach the real supervisor and left a message.

Is there anything I should be doing, now the cut-off is in effect? Should I file an appeal? There's just 22 days left to appeal, from the date of the letter, which I did NOT receive 5 days after the date on the letter, more like 2 weeks. But I can't prove that. I'm thinking I should just file an appeal anyways, to cover all bases.

Is there something else I should be doing? Thanks for any help anyone might have.

Pam R.


New Member
i really dont have any answer but to appeal .but i do have a quistion for you. you said you get ssi cause you take care of your i have a son who is autistic and he gets a check every month and some one told me i can get something cause i take care of is this true and if so how do i go about it.

Pam R

New Member
I don't think you can, if he has SSI. I get something because of my husband's disability, his SS*D*I. And it will stop when DS turns 18, as he will get SSI on his own disability.

Pam R.


New Member
I read this when you first posted, but have no answer for you. NMy husband has been getting SSDI since 1990. And yes, our kids also get a check due to being dependants of his. I never got a check for caring for him or for the kids......and 2 of our kids are disabled. I got my own SSDI in my own right, based on my own working time in 2001. Our kids do not get SII becuz dhs SSDI checks to the kids are more than SSI would be, so my kids do not qualify due to income guidelines. Altho my oldest turned 18 in Nov and in AUg I did apply for HER to begin getting either SSI or for her checks to continue as a dependant under my DHs SSDI.
When we went in Aug, the soc sec office did apps for her for 2 different ways to pay her, and they said one would be denied but best to do it both ways. ANd yes, one was denied, (I do not remember why, - I think it was cuz it was the wrong program?) and the other program was supposedly approved in Oct. BUT while the soc sec office gave me an INFORMAL award letter so we could continue our application to continue my dtrs veterans dependants benefits, as well, we STILL have nothing else, and no check coming. GRRR! Only the informal award letter saying she had been approved in Oct.
My calls to soc sec go unanswerd, the phone rings 50-60 times and then disconnects. Once in awhile a voicemail machine answers. When I go in person, I wait 3-4 hours and then our rep says she will call me back when she has more info.
It is extremely frustrating.

Oh and we also did make application to VA in Aug and that is also still "pending" - so she continues with no income, and no medical coverage for now. :-(

Pam R

New Member
When your husband applied in '90, were you working, or at home? When my husband applied in 99, I had not been working outside the home since '90, before my DS was born. I was also homeschooling. That's why, I assume, I got the benefit.

If you got SSDI in 2001, you had to have had 10 consecutive quarters to qualify. So if you worked outside the home, I suspect that's why you never got the benefit from your husband's SSDI.

And yes, the kids would not get SSI because the SSDI pays more, which is why I can't get SSI for being disabled. I can't get SSDI because I've not worked since 90.

My understanding for SSDI is that the child is no longer eligible after age 18 for benefits from the father's SSDI. If you had applied for that, I expect you would be denied.

My understanding is that the child applies for disability on SSI when they reach age 18. I expect this would be approved.

And it's sad to hear that you've had the same experience trying to contact your SSI office as I have. It's also a 3-4 hr. wait, if you do not have an appointment, here. :grrr:

I've had no health ins. for 5 years. Massachusetts is the first state to offer health insurance for people who do not have access to any. So I JUST got health ins. on March 1, 2007.

I know SSI takes forever to get started on. My husband went out on disability in March of 99. We never got our checks from SSI until September of 2000. Granted it was for all the back pay they owed, but we had to survive until then.

So if you've been approved, the money will come, sometime, I expect. It's just really hard in the beginning. If she gets SSI, eventually Medicaid (care?) will kick in, but not for a while. I think it was 2 years for my husband.

Thanks for responding, even if you could not answer my questions. :smile:

Pam R.


New Member
I had worked prior to my husband illness, but at time he first became ill, I had not worked for a little over a year ((was going to be a stay at home mom, LOL) As soon as he first got ill, I did go to work immediately....altho at first we did not realize HOW ill he was. I continued to work until my disability becuz, as I am sure you know, it is VERY hard to exist on soc sec disability, especially with children and becuz in our case, we also would not have had medical coverage unless I worked, becuz my husband soc sec benefit was just barely over the income cutoff guideline at that time......SOoooo while HE did eventually get Medicare (after 2 years) the rest of us were left with NO coverage.
Then when I became disabled, I lost the medical coverage until MY Medicare kicked in but, still, the kids could not get Medicaide becuz our income was $20 a year over the income cut off for Medicaide

For us, the good part is that eventually finally my husband military disbility kicked in, and around the same time my Medicare kicked in, so did his military benefits, and with that came ChampVA coverage for me and for the kids.....

Ya know, actually I think it was the SSI they denied my dtr becuz they said they were going to continue her as a dependant of my husband? DUe to having been disabled before age 18? I know the VA is also processing her continuing benefits with them as a "helpless child-disabled prior to age 18"? We did NOT have to do a guardianship hearing, and they made us her representative payee based on her being disabled prior to age 18 and that they are simply continuing her as our dependant? (she continues to live in our home, and for financial situation, they said it should continue basically very similar to how it has been all along with her check- we will still get it and we will still "take care of her" just as it has been all along?) BUT if she moves out of our home, THEN it will be done differently? I think THEN they said we would change to SSI? (and possibly a reduction in how much her check is?? go figure?)

LOL, I am kinda lucky at the moment, I feared her reaching 18, feared hearing the dreaded "I am 18 now" out of her mouth? Well so far, she still ACTS as if she is not 18..........the other day, LOL, she asked permission to use the "s" word when she sang a song that has it in it, LOL.
BUT it IS a financial hardship doing without her checks......and until the VA stuff also falls into place, she is going along with no medical coverage, no medications, and it IS hard running a household on soc sec for 5 with only the benefits for 4. (aw heck, it was hard running it even WITH the benefits for 5) Partly like I said becuz our soc sec is $20 over the income cutoff for low income help. Sure her money will come with the back pay you said- what about in the meantime? My big fear is she will get sick or hurt. MAYBE the benefits will go back and cover it back to the time we applied, but........cannot fill any medications right now this way. and the groceries are getting slim. House payments and utilities do not want to hear- "it's coming"
AND IIRC if back pay reaches a certain dollar amount then there are different rules etc about how you use it and apply it to things. (I cannot remember for sure..but I think even "back rent" might not be an "acceptable" spending of back pay? Yeesh, go figure)

SO, LOL back last week and week before etc when it was so nasty outside, I told her she could NOT go be in ANYONES car, LOL- lest they slide on ice and she get hurt, LOL. We would be hard pressed to even buy band aides and ibuprofen, much less any more urgent health care that might be required. LOL. ANd her new shoes are awaiting her benefits beginning. Sadly, so are her sisters, AND her brothers safety glasses (for his injured eye) - cuz we are stretched tight due to being short her financial input.

I do remember when I got awarded MY soc sec, at that time soc sec increased the amount of the childrens checks....something related to the fact of both me and husband both being disabled and our income?
I also remember lobbying for health care for families where one parent is disabled, even when you have health insurance at the other parents job, it can be cost prohibitive, and 2 of my kids and myself also had pre existing conditions that excluded us frome being ABLE to buy our own medical insurance. There was a state program for uninsurable people BUT YIKES when I checked that out? OUCH! That was way cost prohibitive!!!!!!!!!! IIRC it woulda been $600 per month at that time for my oldest child and $500 a month for my son, AND the coverage was not that good AT ALL..........with very low payouts for psychiatric and neuro..(very high copays for psychiatric and neuro)

Another logistical problem we have always had is that in our area, very few docs accept Medicaide, and ChampVA.......oh technically the hospitals HAVE to in certain situations, but....reality is....they find ways to wiggle out.

I am SO tired of the busy signal at soc sec, so tired of the unanswered phone, and so tired of sitting IN the soc sec office.
we applied 7 months ago. - we were supposedly approved 5 months ago.
Where is it?

Last week when I went in to soc sec office in person, our rep said if she pulled the file to check? She said then they would refile it back at the very end of the list, making it take even longer? Yeesh.

Pam R

New Member
Maybe a little over a year was not long enough for the spouse benefit. I don't know.

And do I ever know being just that tad over the limit to get help. :grrr:

It seems I have nearly a full time job just trying to keep on top of all the programs to try to survive. Nevermind the full time job of trying to homeschool DS and find services for him.

Regarding your daughter continuing on SSDI, that's an interesting fact. If I EVER reach a worker, I will ask about that too. :hammer:

And man, oh, man, I am soooo dreading him reaching 18, because that will be the first thing out of his mouth: "You can't tell me what to do, I'm 18!" :hammer:

And yes, there are some kind of restrictions on back pay for children. I know a mom who has adopted many difficult child kids and I remember when her oldest daughter went through that. It was a huge amount, and I think they ended up using it as a down payment to buy a condo for her.

I'll never have to worry about SSI looking at both of us as disabled, because they won't even talk to me, as the income's too high for SSI and I don't qualify for SSDI. :rolleyes:

We had COBRA ins. until 5 years ago. That year Massachusetts raised ALL health ins. across the board 25%. Ours went from $800/mo. to over $1000/mo. That was the end of health ins.

Eventually husband's kicked in from the SSDI. About 6 months later, I managed to get DS onto MassHealth for Children. But I've never managed to get any for myself, until this program was started up.

MassHealth has much the same problem here. Mass. is not reknown for prompt payment of submitted bills.

I wonder if that pulling of the SSDI file is applicable to our predictament, mostly because the supervisor said it had been sitting on the worker's desk all this time. :grrr:

I think I'm gonna have to bite the bullet and go down and sit for hours here soon. Sigh.

Pam R.


Just a couple of clarifications based on what little I know of what you guys are talking about.

SSDI recipients are on Medicare, not Medicaid. And there is a two year wait to get on that, I believe from the date of disability. For SSI recipients, it's Medicaid, only to the disabled person, not to the family.

You don't need to go through the guardianship process in order to be designated recipient of a disabled child's (no matter the age) SSI check. I assume the same applies to a over 18 child collecting SSDI as dependent of SSDI recipient.

Dreamer, in order to consider your daughter a child disabled before 18 presumably they would have to determine that she is disabled. Even if they determined that she was disabled years ago, at the 18th BD they have to do it again. There are certain exceptions such as genetic conditions eg Down's. But if she's not in one of those categories presumably they have to review her records and possibly evaluate her to determine that she is disabled.

In terms of hospital treatment, I'm confused as to how the hospital can wiggle out of giving "charity care". If you qualify you qualify. That does not include non-medical charges such as TV and phone in room but should include all medical charges.

I have had success in getting the local office phone number and an extension from a person in that office when I'm there. eg I owe them some Dr name or phone number and I need their number to call them tomorrow to give them that info. I also have been successful in getting the 800 number people to put me through to the local office by making them sorry they even tried to address my extremely complex question. LOL. Also, when you do get the local office phone to answer try pressing buttons like 0 and the star and pound signs. Might get an office directory or something. Another thought, while the default office is the one assigned to you, you can ask that all your files be transferred to another SS office that is less busy if there is another near you.

Pam R

New Member
Thank you OTE for all this. Some of it I knew and used. I am going to print this for reference.

I did send in the appeal letter and got a call back from a worker, but not MY worker. :hammer: And this worker told me to talk to MY worker and I told her the same as I told the supervisor.

Her response was that they are ALL out of their offices from 9 AM - 4 PM and it can take WEEKS to return calls.

Ummmm, so exactly how am I supposed to reach my worker for answers in a timely manner??? :hammer:

Our tax dollars at work. :smile:

Pam R.


New Member
Yes at 3 months prior to my dtr turning 18 yes, she applied and was awarded benefits for being disabled before age 18 and continues on as a dependant (as she was before age 18) under her fathers and my ssdi.
I came to post- LOL- our check for her came today! Back pay retro to her birthday. BUT, LOL- NO letters at all came, nothing..........just a check in my name as her rep payee for her care. (same as I get for her under 18 sibs)

AT the time of application, the soc sec office was not entirely certain if she would get dependants coverage and thus ? what kind of medical, but for us for her, she has an app pending with VA as well, for "helpless child" for her bipolar and anxiety, as well......and if awarded THAT she will have ChampVA medical coverage, anyway. - So whether she gets Medicare or Medicaide will not make such a difference becuz ChampVA will cover what Medicare doesn't. (ChampVA is secondary to Medicare)

Yeah I tried pushing 0 and 1 etc, all kinds of things, did not help, especially when most of the time I got a busy signal, not a ringing phone, and then 2nd most I got a phone that rang and rang but went unanswered thru 50-60 rings and then disconencted. (at our local office)

I do not know how to explain it but......yes, our hospitals here do and have "wiggled out" of delivering charity care........not just me and not just once. They can be quite creative.
One time my husband was in an accident, head injury, abdominal injuries, massive road rash.......ambulance brought him in to ER. Paramedics had administered morphine, to which husband is highly allergic. (makes him psychotic and destabilizes his vital signs) hospital refused to even look at him, he was laying on a gurney. They simply discharged him. He was not aware,. alert, oriented. He was bleeding all over, his right arm hung askew. he was covered in embedded gravel. I arrive to ER in my elec scooter, having been summoned by police at the accident scene to find hospital telling me to ....take him home..."he's fine" Uh scuse me, I am a nurse and I KNOW he is NOT "fine" And how do you think I am gonna even get that barely conscious person out of here to the car? Not their problem. I ask to see his XRays, I see bleeding on the pillow under his head. hospital staff walked away, next thing, theres security, who pushed gurney out to parking lot. They put husband into my car and I drove the almost 2 hours to VA hospital where he was admitted to ICU for 3 weeks.....lacerated spleen, broken collarbone, dislocated shoulder, back of head split open. He has Medicare, had it at time of accident.

MY easy child was on school basketball team. Went head first into bleachers, hit her face first, broke her top front teeth, split open her mouth, broke her wrist. Principal rushed to my side while I was at her side, and whispered to me, you know we do not cover these type accidents? Only after I acknoledged him saying THAT would he call 9-1-1........ BUT another parent in bleachers with me was a paramedic and she called.
AMbulance transport to hospital- unsure if there was a broken neck, due to how she hit.
AT ER first thing they said was they do not can not handle anything with teeth or mouths. They do not have a dentist on call.
2nd thing they said was they cannot treat a broken bone becuz we have to go TO orthos office for treatment of broken bones. It was 8 PM on a Fri nite. I know the ortho in our county, and he does NOT have sat office hours and he also does not accept Medicaide. (He can refuse to accept public aide in his office) OK, a broken wrist is not generally considered life threatening BUT it is still emergency care, and it is still a community hospital, and they would not even do xrays. AND they also would not XRay her neck, saying the ortho could do that as well, when we saw the ortho. SO- they did NOTHING and tried to discharge us. AHA! Across the hall was a boy from the private school in town, ALSO a victim of a basketball team accident, LOL..also needed an ortho consult, apparently..........becuz........the ortho was present at THAT kids bedside.........setting THAT kids broken arm. I waited in the hall for ortho and demanded he come set my childs wrist,. He tried to hem and haw. But I threatened him and when security came to remove me and my easy child from the exam area, I told security I would sue his rear as well, if he did.

There are many many more stories similar. Yes our hospital is a community hospital and technically they do have to accept Medicare and Medicaide. But they manage to find ways around it. They also in the last 2 years have begun handing incoming patients with a waiver to sign saying they are an ER and as such, they cannot be held accountable for misdiagnosis, becuz there are too many variables in emergency medicine, and they cannot possibly gather all the info needed to give a correct diagnosis so in order to be seen, you have to sign this stupid (probably illegal) waiver.

Yes, I have a total now of FOUR friends who have SUED this hospital........2 have w on, 2 are still in court. Sadly 2 of the cases DID result in death. Last week I read our hospital was named one of top 10 in our state. Yeah, OK. go figure.
WHY do we go there? We no longer do, a severe emergency, if you call 9-1-1 this is the only place an ambulance here WILL take you.
It is also the only hospital for an hour+.

ANd since no docs accept Medicare or Medicaide here, either- we have moved all our healthcare 3 hours )at least) away to the city.
The sad dumb thing? We are NOT that rural, nor are we that isolated.........the theory according to letters to the editor in our paper is we are affluent (we are in top 10 affluent counties in the nation) BUT our population refuses to acknowledge or accept we have any needy people.
Truth is, ALL our group homes for transitioning teens closed approx 5 years ago, every single one. Our home for autistic young adults closed. We have no homeless shelter, no battered womens shelter. WHY? becuz the citizens of our county 1. say- no we do not have that type problem here. and 2. they say, NO, not in MY backyard, NO, you will NOT place THAT here where I live.
Even when you do have Medicaide here, and technically you are supposed to have some degree of dental coverage? When you call to find out where to go to access dental coverage? You are told either in the city (Chicago) or way down south IL, always it is at least a 2 hour drive. Often if you try to get services in CHicago or down south (chicago is a different county) - when you arrive, you are told you live "outside their service area"

Many of these programs look good on paper, but, many of them sometimes do not work out quite how they were originally intended.
Yes, I advocate and lobby. Yes, I go to our state capital. I am involved with NAMI and veterans groups etc to try to change these experiences to more positive ones. Yes our politicians are VERY aware.
Yes, it is a true fact, our hospitals DO wiggle out. and yes it has been documented, by politicians and a few others of powers that be etc.

It was a problem for our indigent residents of the nursing home where I worked, too.......and for the homeless veterans requireing help and returning from service etc. It is a problem of the displaced mentally ill. EVen when you DO get them the benefits to help them, the benefits far too often fail.

Yes, I have been active and busy since 1990 learning all about these systems.
Yes, my dtr got evaluated, and was approved.......she was denied SSI since her disability b egan and is documented to have begun MANY years before age 18. SHe did NOT get SSI previously, under age 18 becuz her dependants amount was higher than SSI would have been.
BUT soc sec found her disabilities to affect her severely enough to award her benefits.

My husband gets ssdi, and has since 1990, I get ssdi and have since 200. Our combined ssdi puts us just over the income elgibility cutoff for my KIDS to get Medicaide. Yes, me and husband get Medicare. Thank goodness the military awarded my husband his VA benefits, and now the kids have ChampVA coverage.

SO again- we applied for my dtr for benefits thru soc sec for her in AUg. her 18th birthday was 3rd of Nov. In Oct soc sec local told me she had been approved and awarded but who knew when he checks would begin? Now it is march, and her back pay check came.


New Member
PS- some people who do get Medicare ALSO can qualify for Medicaide. (depending on their whole overall situation, financial picture) and yes, it is a 2 year wait to get your Medicare. ANd no, even if BOTH parents get Medicare - it does not mean the kids WILL qualify for Medicaide. Often they do, depending on the dollar amount of the parents soc sec income and or other income- etc. But sometimes the kids DO qualify.
SOme state automatically award Medicaide to SSI recipients, some states don't. (some award food stamps, too and some don't)
ANd yes, some states have things such as Katie Beckett waivers etc for disabled kids to help kid regardless of parents financial situation, and some states do not have such waivers or help.
Our soc sec office asked me if I wanted to be rep payee for my dtr due to the type of her disability and symptonms of her disability. FOr our under 18 kids, I was automatically rep payee, but my dtr could have chosen to NOT have me be her rep payee, and then becuz of her type of disability, soc sec MAY (but might not) decide she MUST have someone else be her rep payee and possibly a guardian- IF she leaves MY home. Also my husband soc sec I did not have to become his guardian legally, but, I am also HIS rep payee, unless HE decides he does not want me to. BUT then he may require a guardian. (soc sec may require him to have a guardian, and same for my dtr, if either of them decides they do not want me to do it)
BUt that is becuz part of my husband and my dtrs qualifying for soc sec has to do with their mental level of functioning.


New Member
OK I came back to post that TODAY her award letter finally came! How it turns out is she will be getting the same amount she always got.........and it will come the same day it always did- so it will be very much the same as it was before she turned 18.
And I think now I can take her and her award letter and she can apply for Medicaide and food stamps, too?

Pam R

New Member
Yup, I would think with the award letter, and probably a ton of other copies of things like letter stating she lives with you in lieu of rent, etc., you can apply for them now. :warrior:

Cool you finally got the letter.

I am still chipping away at the disability application I have to fill out, yet again, for my son. :hammer:

Some day.....

Pam R.