Our 'Exceptional' Journey of Applying for Supplemental Security Income

Our 'Exceptional' Journey of Applying for Supplemental Security Income

Author:  Scott G. Russell, CFP®

OK…. deep breath…. I've heard the horror stories…. I now have to begin the painful journey of applying for Supplemental Security Income (SSI) for our daughter as per the instructions of the Magistrate during our Guardian Advocate hearing.  So, here we go…

I called the Social Security Administration (SSA) at the beginning of May 2019 to start the process.  They took some basic information from me over the phone and we scheduled an appointment (about 2 weeks out) for me to go to the local SSA office.  They said to be sure to bring information regarding her doctors, hospital, medications, and direct deposit information.

May 17th:  I showed up to the VERY crowded local SSA office but since I had an appointment I only had about a 5-minute wait.  The processor was extremely nice.  He applied for Social Security Disability Income (SSDI) and denied it since my daughter had never been employed and paid into the system.  He said that step was necessary to be able to apply for SSI.  

He asked why I had not applied previously but then he answered his own question.  He said it was because our income was too high, right?  I responded, correct.  You see, while your child is a minor, the SSA looks at your income as well.  We were over the limits.  I went on to say that the court required that I apply for SSI now for her, in case something happens to my wife and me. 

He asked a lot of questions regarding her medical background.  I had typed out her doctors' phone #s, addresses, etc. prior to, which made it go more quickly. He asked for a lot of dates surrounding her medical history (e.g. procedures, overnight hospital stays, evaluations, last appoints with primary and ob/gyn and future appointments).  Of course he asked for diagnoses, etc.  I didn't know all of the exact dates and he told me just to make my best guess because I'm only swearing to provide answers to the best of my knowledge.  In hindsight it would have been better to bring both our medical records and my wife, so that we could make better approximations of time.  

He asked how long she had this condition.  I said since birth.  I believe I previously relayed that it was since 2015, which was when she received the official diagnosis.  However, the fact is she has had it since birth.  Not sure if that makes any difference….

He asked if she had money in bank accounts, etc. I said she only had $500 in the payee account since it was required to open the account.  (Side note:  Opening the bank account reflecting my wife and me as guardians took two visits and probably a total of 3 hours at the bank.  It required both my wife and me to be present). He also asked about other assets she could own (e.g. did she own real-estate, etc.).  Next, I believe I made a mistake.  They asked about trusts.  I relayed that she had a special needs trust but it was not funded.  Again, I believe that was a mistake, the trust is not hers and it has it's own tax id number.  I then tried to explain the trust but he relayed that he was a level-2 processor and couldn't comment on the trust.  He said during the approval phase they would be asking about that.  

During the process he asked if I gave SSA authority to verify her financial and medical records.  I said yes.  

Then came the paperwork.  I provided the Guardianship documents that were emailed to me.  He reviewed and thought they looked good BUT they had to be certified copies.  He said that I could run to the probate court a few blocks down and get them certified, which I did.  When I returned, although he was with another client, he asked someone else to make copies of it for me.  (FYI- the security guards at the SSA office are very serious looking)

He did not give me any ETA on when the next step begins.  

June 6th:  We completed and faxed back a questionnaire concerning my daughter that we received in the mail. 

I later received a call and letter pertaining to an evaluation that my daughter needed to have done in order for them to determine her eligibility.  Evidently, in addition to the diagnoses documentation, they need their own doctor to verify her diagnosis (FYI- they are very determined to make sure you do not miss your appointment.  I must have received at least a half dozen reminders of the appointment).

July 11th:  My wife brought my daughter to the SSA satellite office for the evaluation.  They were considerate and got them in and out pretty quickly.  The evaluator brought my daughter into a room without my wife present to ask her questions.  He fairly quickly verified the diagnosis was correct.  He asked my wife a few questions about future plans and he seemed on the same page with what our thoughts were.  Again, my wife was pleasantly surprised with how the evaluation was handled.  

The following is dialogue related to me trying to clear up some banking fees for the payee account we set up to receive the SSI payments and also some related interactions with the SSA.  If you enjoy satirical comedies and/or you just want to better understand the frustrations one goes through regarding this process, you might enjoy it.  Otherwise, you're welcome to skip past it.  

Call with bank

Me: I'd like to know why there was such a large fee in the account.

Bank Associate:  That is a monthly fee that is only waived if the owner is a student, if they receive electronic payments of at least $250, or carry a balance of $1,500 or more.  (FYI-The SSI claimant cannot have over $2,000 in cash before they factor the assets into your eligibility.  I had to put in $500 to open the account.)

Me:  My daughter is a student

Bank Associate:  This is set up as a Guardianship account. Therefore, it is not eligible for the student waiver

Me:  My daughter owns the account; my wife and I are listed as guardians since the court appointed us to assist my daughter with financial decisions.

Bank Associate:  Sorry, this is coded as a Guardianship account. Therefore, it doesn't qualify.

Me:  So you are saying that since my daughter has special needs you are discriminating against her by not providing her access to the student discount? (I actually had to relay a couple of versions of this point)

Bank Associate:  …hesitation….let me check……we will credit you back for this past fee:).  Again, the fee will go away when she begins to receive payments.

Call with Medical Disability Adjudicator (MDA) at the Florida Department of Health

Me:  I would like to see if I could get an update on the status of my daughter's SSI qualification process.

MDA:  I approved your daughter's case.  However, after approval at my level, it can get pulled by either the Tallahassee office or the Atlanta office for further review.  It was pulled by Tallahassee and approved… then it was pulled by the Atlanta office, which is where it is now.  (huh?)

Me:  OK…is there a timeframe for that?  I opened a bank account so that my daughter can receive the payments.  However, they are charging fees until she begins to receive electronic deposits.  

MDA:  No definite timeframe.  However, you should go ahead and call the Social Security Administration (SSA) Call Center to put the bank information on file (She was very nice and I THINK recommended this because she felt good about it being approved)

Call with SSA Call Center

Me:  I'd like to add the bank information to my daughter's SSI claim.

SSA Call Center:  We cannot take bank information from you until you are set up as Payee

Me:  …but I supplied all of our guardianship paperwork when I submitted my daughter's SSI claim (As previously noted, the local SSA office made me walk to the courthouse to get certified copies of the guardianship paperwork when I first filed the SSI claim…FYI- we're in Florida….it's hot…).

SSA Call Center:  Yes, I see the copies on file.  I don’t know why they didn’t set you up as Payee at the time you applied.  Go into your local office, so they can set you up as Payee.  No forms are required, just your ID and your daughter's SS number.

Visit to Local SSA Office

Me:  I'd like to get set up as Payee for my daughter's SSI claim (FYI- this was after a long wait in queue.)

Local SSA Office:  No, we cannot set you up as a Payee.  You are WAY early in the process to do this.  You have to wait for a future meeting (no details on what that future meeting was about or when it would be).

Me:  Not happy….

Call with SSA Call Center

Me:  So…the local SSA office would not set me up as Payee.  

SSA Call Center:  Sorry your local office said they couldn't do it

Me:  So what do I do now

SSA Call Center:  You should just wait for approval letter (if approved) that will be sent to your daughter, they’ll request that she bring in additional information, then you can get updated as Payee

Me:  Can I get a status on the approval process?

SSA Call Center:  Only your daughter or her Payee can get info

Me:  ….but you said I need to wait before applying to be Payee

SSA Call Center:  Yes

Me:  So my daughter that won't understand needs to call to get a status?

SSA Call Center:  Yes

Me:  …but she won't understand

SSA Call Center:  She could call and give us permission to speak to you on the phone.  Can she do that?

Me:  …..I guess…..if I coached her what to say

SSA Call Center:  OK.  That's the only way to get a status, since she is an adult.

Me:  &$^$%#&*#

August 17th:  Received a letter relaying that my daughter was approved but I needed to attend a phone conference to provide more information.  One, sort of funny, part of the letter was that they acknowledge my daughter may need assistance managing her benefits.  So, they told her to bring someone that she trusts to the office at her appointment time and that they should bring their driver's license and proof of income….again, this is a conference 'phone' call??

August 20th and 21st:  Left message to try to clarify if this was truly a phone interview or if I needed to go in person, again, since they were telling me to bring hardcopy documents.  I did receive a voicemail clarifying things before the call.

August 29th:  I had a call with the local SSA caseworker.  The call seemed to go well.  We discussed my daughter's situation (e.g. income, assets, living arrangements, etc…).  She set me up as Payee.  I decided not to go the path of trying to receive the full SSI amount at this time by documenting rent, food expenses, etc.  At the conclusion of the call, the associate asked for two follow up items, an original copy of my daughter's special needs trust and the account information of the ABLE account when I eventual set up the account.  I had planned to open one for my daughter.  

September 6th:  Being concerned that I would never get back original copies of our trust paperwork if I mailed it in, I brought in the originals to the local SSA office.  I requested the SSA associate to make copies for them to keep and to provide me back the originals.  I'm not proud to relay this but it wasn't until I arrived back at my office did I check the documents I received back.  Of course I received back the copies and not the originals….  I left several (respectful) messages for our caseworker concerning the mix up, never to hear back…. 

September 30th:  Finally, after never hearing anything for several weeks, I called the central SSA Customer Service line to see if someone could at least confirm a status and/or if they could tell if the local office had my original trust paperwork.  They could only confirm that our case was still pending.  That is, it was still on someone's desk.  I was given a number for the local office where I could escalate the matter to a supervisor.  Upon calling that number I was told I shouldn't be calling that number but after listening to my situation the person (begrudgingly) took my information to pass on to someone to look into it.  I never heard anything back…..

October 3rd:  After 4 ½ months since officially applying, my daughter received her first SSI payment with back pay to when we first applied!  In addition, by the end of that week, we began to receive the first of MANY notifications concerning my daughter's enrollment in Medicaid.  Even more shocking, that following week I FINALLY received an envelope with our original trust documents!

So, what was the main take away from my experience?  I feel sad for anyone trying to navigate this process that might not have the capacity to fully understand it.  I'm assuming that is why there is such a high percentage of cases that initially get denied, which I believe for SSI and SSDI is as high as 70%.  I'm sure the SSA employees are doing their best, and maybe it's because I knew of the high denial rate going in, but it certainly did feel like the process was designed to find any reason to deny our claim.  

I think a few things are important for those applying:  

First, read up on the process before applying.  Know what they are going to ask and be ready with documentation.  Since you'll work with multiple people along the way, ask each one what you'll be expected to provide at the next step.  I expect each time you don't have the info they are looking for it could add a month to the process.  In addition, when speaking with you, if they can tell you know what you're doing they are going to take you more seriously and feel better about spending their time on your claim.  

Second, document the process along the way.  Know with whom you spoke with and on what date.  Again, when speaking with caseworkers or customer service reps, if you are able to give that type of detailed information from previous interactions, they know you're documenting your interaction with them as well.  

Finally, be the squeaky (but respectful) wheel.  I knew that if I wasn't following up on things then nobody was and the longer things dragged on between advancing in the process, the more likely the responsible party might either not remember previous details or not even be around anymore.  That said, I tried to be realistic on timeframes and didn't hound them every day expecting a status.  I mention the respectful part because I know they record calls and although I was persistent, if I was out-of-line on a call it would just provide a reason for them to bury my case.  Remember, we want to win the war, not necessarily every battle. 

If you are going to embark on your own journey of applying for SSI, I wish you the best of luck!  Remember, stay cool, stay persistent, and don't give them a reason to deny or delay your claim!