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SSI Continuing Disability Review: our experience

Have you read the post from 2013 titled “When SSI benefits might be terminated“? Not surprising if you haven’t – it hasn’t gotten many views. Heck, I scarcely remembered it, and I wrote the dang thing! But this year I sure reread it a few times after the Social Security Administration (SSA) put Nathan’s case under review.

The old post was written from research and talked in generalities. Which is fine, but it lacked the details of a first-person account. Now, you’ll get to read what happened at each step in the Continuing Disability Review for Nathan’s SSI.

For the last few years we’d been sailing along without much interaction with SSA. In early December a notice would come about the increase in SSI benefits (or not) in the upcoming year. In the spring of every year I’d file the requested Representative Payee Report.

In mid-January this year, out of the blue (unless it was because Nathan had been receiving SSI benefits for exactly five years), we got a Notice of Continuing Disability Review. The letter gave an appointment date and time in mid-February to come in and discuss Nathan’s situation: his health, ability to work, work history, medications, and treatment history in the previous 12 months. The meeting wasn’t going to be at the SSA office where Nathan’s SSI case manager works; a contact person was not specified.

We also received a 13-page form, titled “Continuing Disability Review Report.” Luckily, several parts didn’t apply to Nathan, so the task of completing it wasn’t as daunting as it first appeared. If the SSI recipient isn’t capable of filling out the form, someone who knows the recipient well is allowed to do so. In our case, I filled it out on Nathan’s behalf.

The notice suggested that I telephone soon if I had a conflict. Not responding and not showing up could trigger a loss of benefits. The notice didn’t say whether Nathan himself had to go to the appointment. I opted to go without him.

Report in hand and rehearsing my arguments for keeping the benefits coming, I arrived at the SSA office ten minutes before the appointment – and saw a long, barely-moving line outside the door. No way I’d be sitting inside at the designated time!

When I mentioned this to others at the end of the line, one of them was sure that people with an appointment could bypass the line. Yes!

Even after jumping to the front, I had to get through the metal detector and purse search (where the youthful security guard made fun of my old-school iPod) and then stand in a long line just to get to the check-in kiosk.

Although I finally sat down in the waiting area several minutes after the scheduled time, I needn’t have worried: it was another hour before I was called to a desk.

The gal flipped through the report and said, “Normally, I’d have you answer follow-up questions while I input the information on this form. But since we’re so backlogged today, I’ll just take the report and input it later. Thanks for coming in.”

All that waiting just to submit a document! Would it be enough to convince them?

No. A few weeks later Nathan received a packet from the California Dept. of Social Services. SSA had forwarded the claim to them for review, and they had decided more information was needed.

The packet was sent and addressed only to Nathan, and contained an eight-page “Function Report – Adult – Third Party,” to be submitted in ten days. The cover letter included the following paragraph:

“When we evaluate a claim for disability, we must determine how the claimant’s impairment(s) affects his/her ability to function in normal daily activities. Your name was provided by the claimant as a source of this type of information. Therefore, your assistance in completing the enclosed daily activities form is requested.”

But … wasn’t Nathan the claimant? How could he complete a third-party report when he is the first party?

I called the analyst who sent the packet for clarification. She cheerfully explained that Nathan was supposed to give the report to someone who knows him well.

“So … that could be me?” I asked.

“Oh, absolutely!” she replied. “We’d prefer that, actually. You probably know him better than anyone.”

“Okaaay,” I said, wondering why they hadn’t sent it to me in the first place! Or why the letter didn’t tell the recipient to give the form to someone else.

Almost all sections of this form consisted of multipart essay questions. Topics include: the claimant’s mental/physical condition, daily activities, personal care, meals, house and yard work, getting around, shopping, money, hobbies and interests, social activities, and general abilities.

Remembering the advice we’d heard when submitting/appealing Nathan’s SSI application – “bombard them with documentation!” – I gave detailed answers to every question, using the “Remarks” section to complete earlier answers where I’d run out of room. It took several hours over several days to finish.

“This better be enough to convince them!” I thought as I faxed the report on Day 10.

It wasn’t. In mid-April Nathan received a notice that he needed to be examined by a mental health professional chosen by the Dept. of Social Services.

The appointment, at no cost to us, was scheduled for mid-May. Again, failure to show up might result in SSI benefits being terminated. Nathan had to sign and mail or fax a short form confirming the appointment and authorizing the results to be shared with his doctor.

By this time, Nathan was getting concerned that his benefits might be cut off. Although his willingness to try employment has improved, none of us believe he could tolerate working enough hours to support himself. His depression, ADHD, and Aspergers and/or Schizoid Personality Disorder still present large obstacles to holding a job.

On the day of the appointment, Nathan mentioned that his mind was foggy. We got there a few minutes early, and he was given a form to fill out.

He’s never been speedy at writing answers to questions, but on this day he labored over each word. “How do you spell ‘suicidal depression’?”  “Who was my last doctor?” And so forth.

He was called back before finishing. The exam only took ten minutes; then he came back out to the waiting room and slowly completed the rest of the form. Afterwards, Nathan lamented that he hadn’t explained himself clearly to the examiner. “I just couldn’t come up with the right words. I think I blew it.”

Silently, I reflected that not expressing himself well may have helped the cause.

In the days and weeks that followed we braced for the decision, or for the next request for information. Reviewing the 2013 blog post, I saw that SSI benefits are hardly ever terminated due to the recipient no longer qualifying as “disabled.” Was this still true?

The letter came to Nathan in mid-June, stating that “…you will continue to receive Supplemental Security Income payments if you still meet all the other eligibility requirements. This is because you are still disabled under our rules.”


The letter also included this paragraph:

“The doctors and other trained staff who decided that you are still disabled believe that your health may improve. Therefore, we will review your case again in about 3 years. We will send you a letter before we start the review.”

What can other atypical young adults on SSI take away from our experience?

  • The likelihood of the case being reviewed might increase at the five-year mark.
  • The SSA and its cooperating agencies may be more persistent in their review than you anticipate.
  • The review process can take months from start to finish.
  • When information is requested, do not be a slacker!




When SSI benefits might be terminated

The archives of this blog contain many posts regarding how to apply for, and hopefully win, SSI benefits for someone with mental health challenges. If you have successfully navigated the SSI application process and the benefits are arriving every month, at some point you may wonder: Might the Social Security Administration decide that the recipient no longer qualifies for benefits? If so, what could I do about it?

The quick answers are: yes, the SSA can pull the plug, but it only happens in a small percentage of cases. If it does happen, there is an appeals process which involves (no surprises here) filling out forms, attending hearings, and probably hiring an attorney.

Cessation of benefits may result from the periodic reviews the SSA conducts to determine whether each SSI recipient is still eligible to receive benefits. The SSA will let you know by mail that a review is coming up. You may get a letter requesting that you come in to the local office for the review. In our case, we’ve received letters specifying a time for a phone interview.  (This was an annual event for the first few years, but now more than a year has gone by since the last review. I don’t know whether budget cuts and the federal government shutdown in October are responsible for the lag, or whether the length of time between reviews typically stretches out anyway.) 

During these reviews, there may be questions about changes in the severity of the disability. There will definitely be questions about any changes in living situation, income, resources, and whether the individual has assets totaling more than $2000 (the upper limit allowed). An improvement in either the individual’s level of disability or financial situation could lead to a cessation of benefits.

But don’t worry too much. This study from 2003, found on the SSA website, discusses the reasons that people exit the SSI program.  It provides a few reassuring statistics. The report states that only 10% to 13% of SSI recipients ever have their benefits terminated. And the chart below shows that if benefits are terminated, the reasons are usually financial in nature. Very seldom are recipients found to be “no longer disabled”.

Chart 42.Percentage distribution of terminations for blind and disabled adults (aged 18–64), by reason, 1988–2003

Area chart linked to data in table format.

From this study we can see that, historically, the odds for cessation of SSI benefits are pretty small, and the best way to avoid the risk is to make sure we are following the rules about income and assets.

One common occurrence that leads to a financial change and a cessation of SSI benefits is if some well-meaning relative leaves the individual an inheritance. Suddenly, the individual has more than $2000 in assets, which is a big no-no under current rules.

This scenario is one reason to seriously consider setting up what is called a special needs trust, where the inheritance could be kept without disrupting SSI benefits. Our family has taken only the beginning steps towards setting up a special needs trust for Nathan; I’ll be blogging more about it as we proceed.

In closing, if you are in the unfortunate 10% to 13% who receives a notice about SSI benefits being terminated, you may want to follow these links to the Disability Secrets website. The first link describes more about why benefits might be terminated, and the second talks about how to appeal that decision:

About SSI payments

There have been seven dazzling blog posts about SSI, and here comes another one. Today’s topic is what to be aware of as the months go by: how to get the maximum monthly benefit, how to handle the backpayments, and what kind of bookkeeping is needed.

The Social Security Administration (SSA) has rules that affect how much they will pay out to an individual each month. If a recipient is thought to be getting financial help from another source, or is working, the SSI payment will be lower than for someone who is not employed and has no other financial support. For young adults whose families have been supporting them up to now, the SSA seems to assume the support is ongoing. This means the first monthly payment may be the minimum amount possible.  In our son’s case, the first few checks were the minimum, in the $600 range.

By the way, this amount included about $150 from the State of California, intended for using toward food. The State adds to the recipient’s SSI check instead of having him or her also sign up for CalFresh (= Supplemental Nutrition Assistance Program, sometimes known as food stamps). In other words, once you are on SSI in California, you can’t apply for CalFresh. The arrangement may be different in other states.

Here’s how we got the maximum benefit for Nathan. When I was getting set up as a representative payee, an SSA worker told me to contact the local SSA office in three months and state that Nathan was now fully supporting himself with the SSI payments. (Prior to SSI being awarded, my husband and I had been supporting Nathan financially 100%.) Between the monthly checks and the first backpayment installment, SSI was indeed covering all of Nathan’s expenses. By remembering to call SSA and make that statement, and by having Nathan not live at home, he was then eligible to receive the maximum monthly payment, which in California is in the $800 range. It took a few months after the phone call for the increase to kick in.

I’m grateful the worker at SSA shared that tidbit – I may not have known about it otherwise. I didn’t see it covered in any documentation we received. If no one at SSA has told you about this somewhat baffling rule, it would be worth inquiring. The process may be less straightforward if the young adult is living with you, but my understanding is that recipients living with parents can also receive the maximum benefit.** See the update at the bottom of the page

In addition to monthly payments, Nathan received 3 installments of backpayments, 6 months apart. In his case, the amounts were around $2500 for the first two and over $4500 for the last one. The SSA suggests using the backpayments for debts, to buy big items like a vehicle or furniture, to help pay for education, to pay for medical needs, and other life-enhancing things. We ended up using the vast majority of Nathan’s backpayment for his twice-weekly office visits to a highly-recommended psychologist who was out-of-network for our insurance (and who didn’t take Medicaid. The ins and outs of health insurance coverage while collecting SSI will be the topic of a later post.)

Would you like to hear another baffling rule? The SSA says the recipient is not eligible to receive SSI in any month that the value of his/her “resources” is over $2000. (The figure is $3000 for a couple.) An associated rule is that the recipient (or the representative payee) has nine months after receiving the last backpayment to spend the bank balance down under $2000. And, if the recipient has tangible items the SSA considers “resources”, the value of those items may count toward the $2000. (That figure of $2000 hasn’t changed since 1989.)

Here is the official version of the rules from SSA. Here is a matter-of-fact assessment of how the rules impact the individual’s SSI accounting, especially regarding backpayments. Here is an editorial on the situation.

This is wacky, right? The recipient wouldn’t be receiving big chunks of backpayment money from SSA if SSA hadn’t (erroneously) denied the application from the get-go. But instead of being able to save that money for future needs, you have to spend it in the now, even if there aren’t big expenses in the now. This rule is SSA’s way of guarding against giving money to people who don’t “need” it. But how wealthy is someone who only has $2001, and no income?

Anyway, as representative payee, I got a call from Nathan’s caseworker at SSA about 8 1/2 months after the last backpayment. He inquired about the bank balance. At the time, Nathan’s balance was still above $2000. The caseworker made it clear that the bank balance had to be below $2000 from the end of the month on.

Now, since the monthly SSI payments come a few days before the end of the month, and Nathan’s landlord doesn’t cash the rent checks until a few days after the first of the month, I wondered if it was OK for the bank balance to be over $2000 just for those few days between the incoming SSI payment and the cashing of the rent check. The answer was No. So we did some fancy (but legitimate) shuffling of funds to make the numbers come out all right.

Now let’s talk about how much time and effort is needed for keeping records of the income and expenses. You can relax – it really doesn’t take much. But you do need to make sure it gets done.

You’ll need to report to SSA anytime there is a significant change in the recipient’s circumstances, such as moving, getting married/divorced, being incarcerated, working, or dying. They give you a list of what needs to be reported.

The handbook for representative payees includes a blank worksheet you can make copies of to help with record keeping. There are rows for months, and columns for: amount of benefits received; expenses for food and housing, combined; and how much was spent on everything else. There’s also a place to record any money that was saved. As long as you keep a checkbook register or something like that, it will only take a few minutes to fill out the worksheet.

Once a year, around the time the payments first started, the representative payee has to submit Form SSA-623 to report where the money went. The form comes in the mail, but you have the option of completing it online. The SSA will have already filled out what they say they have paid out in the year. If all is well, the summary figures from the worksheet can get plugged in to the form, and they’ll all add up. I’ve filled out this form twice, and faced minor glitches each time. The main thing is to be honest about how the money was spent in supporting the recipient (and not funding something else, like your vacation to the Bahamas). You’ll have about a month to submit the completed form.

I mentioned the SSA caseworker earlier.  It is his or her job to help us with any questions or problems, and to ensure the money is being spent properly. At the appeal hearing, we were told Nathan’s case would be reviewed before an SSA ODAR judge in 18 months. My understanding is, the system is too overwhelmed for a review to happen that quickly, although it will supposedly occur at some point. In the meantime, caseworkers contact the representative payees by phone about once a year and ask a series of scripted questions regarding how the money is being used, and if there have been any changes in circumstances. Answering the questions falsely is perjury. You should get a letter a few days after the call summarizing what was said, and if something doesn’t look right, you have a chance to straighten it out.

Did you find all of this information a little confusing? Like most things in life, and especially like most government programs, the SSI system is not perfect, but it is better than no system at all. To summarize: see about maximizing the monthly benefit; be aware of the rules regarding backpayments and maximum allowable resources; and expect to spend less than 10 hours a year on accounting, unless something gets even goofier than “normal”.

Updates  8/7/13

I want to share a couple pieces of information that came from the responses to this blog post (many thanks to everyone who took the time to comment!)

1. Lois W. filled us in on how a family can obtain the maximum benefit for a relative living at home.


When I inquired about the amount of my son’s SSI Benefits, I was told by a Benefits Specialist that in order for my son to get the maximum amount, I would have to charge him rent.

The rental fee had to be in the same range as I would charge anyone else living in my home and/or the same range with one bedroom apts:  bathroom, kitchen and common living area listed in our neighborhood and remember often rental fees do change

I was advise not to go the route of having the monthly expenses divided between other family members, but to let SSA know that he would be paying a flat rate that covered all the amenities enjoyed by each family member.

Then I was told, that I could not just say “I am charging him”, but I actually had to do it and be able to proof it.  I was his Rep. Payee, so each month, I had to write myself a check (memo:________rent.  Then I would write him a receipt.  Since shelter is the first thing a Rep. Payee usually pays, this would be the first check I would write each month.

So, along with cancelled checks, receipts, and bank records, I had proof that he was actually paying rent.

Now what a parent does with the “rent” money is their business.

2. Secondly, here’s a link to a letter written by Jeff Rosen, chair of the National Council on Disability to President Obama, requesting the asset limit be raised from $2,000 to $10,000:  The letter gives the details about what is in the petition that is referred to in one of the comments left on this post. Also, note that the $2,000 figure has been unchanged since 1989, not the 1970’s as I’d first mis-remembered.


After SSI benefits are awarded

Did you win SSI benefits at your appeal hearing? Congratulations!  Did you expect that the checks would just start arriving? Sorry to burst your bubble, but you’ll still have more appointments, forms, and decisions to deal with. This post will cover what you’ll face in the weeks following the hearing.

Soon after the hearing, the judge will send a Notice of Decision letter to the claimant. In Nathan’s case, the decision was “fully favorable,” but the judge’s decision may also be “partially favorable” – for instance, maybe the judge agreed the claimant is disabled, but disagreed about when the disability started.

(If things hadn’t gone well in the hearing, the letter would state that the judge had ruled against you, and that benefits were denied. If that is the case, you have 60 days to file a Request for Review with the Appeals Council.)

The very helpful website discusses more about the alternatives you may be facing at this stage.

After a month went by, Nathan received another letter, saying that he needed to be interviewed by someone at the Social Security office: “…you may be found to be medically disabled by the State Agency for … SSI benefits. To be eligible for SSI payments, it is necessary to conduct an interview with you on [date and time].”

Honestly, I am not sure what this really meant – wasn’t his eligibility established in the hearing?? – nor do I know whether this is unique to how it’s done in California. The letter also said, in bold letters: IT IS IMPORTANT THAT THIS APPOINTMENT BE KEPT OR YOUR APPLICATION MAY BE DENIED. IF WE DO NOT HEAR FROM YOU WITHIN 30 DAYS, YOUR CLAIM WILL BE DENIED. Here’s the tricky part: the interview was scheduled for 5 days after the letter was dated, and there had been a weekend in between. By the time Nathan received the letter and showed it to me on a random visit to our house (“is this anything important?”), the interview was to occur in a few hours! Dear SSA: a little more advanced warning would have been good! I hastily called the number given on the letter, and we were able to set up a phone interview for Nathan the next day. The interviewer from SSA would call Nathan at a specified time.

I wasn’t with Nathan when the interview took place, but told him to call me at work if they needed my input. Nathan ended up calling me after it was over and said it had gone all right. I verified this with a follow-up call to the interviewer. Whew!  He said the first monthly check would be arriving in about a month. (Here’s a link for more information about how long it might take in general.)

The man at SSA also told me that the first backpayment check wouldn’t arrive for at least another month. Remember, the claimant will receive benefits amounting to what would have been received if s/he had been awarded benefits at the initial application. Depending on how large the sum is, the backpayments will arrive in one, two, or three installments, about six months apart (larger sums mean more installments).

You’ll now have a couple of decisions about the payments: 1) Should they be received in the mail, or electronically? and 2) Should the young person receive the payments directly, or should someone manage the money for him/her?

As for the first decision, the checks will arrive by mail (a few days before the end of each month) unless you make arrangements with SSA and the bank for electronic transfer. In our case, Nathan received checks by mail for a few months until I set up the electronic transfer.

The second question is a big judgment call. On the one hand, we want our young people to take on as many adult responsibilities as they can handle, don’t we? In our situation, Nathan had a savings account. He hadn’t really needed to keep track of the balance every month, but he’d had the experience of going to the bank to make deposits or withdrawals. Maybe, with our supervision, he could learn more about managing money: to write his own rent check, decide how much to spend on groceries, etc.

However, overriding the goal of independence may be the uncertainty of how a young person who has a bad track record at rational decision-making would actually spend the $600+ to $800+ showing up every month, along with the thousands of dollars in backpayments.

If having the SSI recipient manage the money is Not A Good Idea, the alternative is to find a person willing to be the representative payee. This person will be the one to write the checks, make withdrawals, and file annual statements accounting for how, in very broad terms, the money was spent.

The representative payee could be a parent, another relative, or a family friend. If the beneficiary lives in a board and care facility, the person running the facility might serve as the representative payee. Possibly, a state, local, or community organization can fill this function if the other options are not feasible.

In our case, it made the most sense for me to be Nathan’s representative payee. To apply, I made an appointment at our local SSA office. In addition to proof of identity, etc., I needed to bring Form SSA-787: Physician’s/Medical Officer’s Statement of Patient’s Capability to Manage Benefits. This meant I had to get Nathan’s psychiatrist, Dr. W, to fill the form out during Nathan’s routine appointment. Although at first Dr. W advocated letting Nathan manage his own finances – and he had a point – he relented once I supplied him with a few examples of times Nathan had not stayed within the financial limits we’d set for him.

If you decide to become a representative payee, you’ll need to set up a separate account just for these funds. (The day I set up Nathan’s account, I unexpectedly had to scurry from the credit union to the SSA office and back again; there was some documentation from SSA that the credit union needed before proceeding. Allow some time for that kind of thing!) Once the account is set up, only you will be able to write checks and make withdrawals – not your spouse, not the beneficiary. Also, be aware that some financial institutions may have a policy of not allowing ATM transactions with these types of accounts. Our credit union would not issue an ATM card, so that means I can only withdraw cash from this account by going to a real live teller, just like in the days of yore.

Now that you’ve made these arrangements, are you done with decisions and processes? No! There will be more hoops to jump through in the months to follow. We’ll leave those hoops for another time – for now, breathe a sigh of relief that, thanks to the hard work of you and the people at SSA, the benefits have started arriving!

English: Cardpunch operations at U.S. Social S...

“This is a picture of a few of the hundreds of cardpunch operators SSA employed throughout the late 1930s and into the 1950s to maintain Social Security records in the days before the advent of computers.” (Photo credit: Wikipedia)

Applying for SSI – Part 6: the appeal hearing

If you had to pick the top 10 careers I am NOT suited for, “attorney” would be on the list (along with “nightclub bouncer” and “large insect handler”). I am introverted, avoid arguments whenever possible, and have “glibness deficits”. Yet on the day of Nathan’s hearing, my task was to fill the role an attorney would normally take. Why? As described in Part 5, the attorneys I had contacted did not think the case was winnable, and so they had not taken it. But in order to get (a) financial help, and (b) official recognition that Nathan had a disability and should qualify for appropriate assistance programs, I’d go where lawyers, in their well-polished shoes, feared to tread.

We arrived at the Social Security building early, and promptly went in the wrong door. Nathan and I spent a few minutes sitting in the waiting room for people with routine Social Security questions before I figured out there must be another place to go for ODAR. Not to be confused with alien space creatures who might bear the same name, ODAR, you’ll recall from Part 5, is the Office of Disability Adjudication and Review. It functions separately from the regular Social Security offices.

We found the appropriate door and went up the stairs and through security screening (similar to entering a courthouse) to enter the correct waiting room. I checked in with a clerk who gave me a CD with the contents of SSA’s file regarding Nathan’s claim. This is standard procedure. If I’d had a laptop and more time, I could have reviewed their documentation before the hearing.

A little after the appointed time, we were shown into the hearing room. Besides “Judge R”, who wore a robe and sat behind a desk on a platform, there was a medical expert (Dr. M) who sat facing us on our left and a vocational expert (Mr. S) to our right. Seats were assigned so that Nathan sat to the left of me as we faced the judge. We had microphones in front of us, since the proceedings were being recorded.

A court reporter swore us in. Judge R commented on how unusual it was for the claimant’s mother to be serving as the claimant’s representative. He gave a few instructions before the proceedings started. For one thing, I was not to offer testimony from the perspective of being Nathan’s mother, but only could speak in the role as his representative.

Judge R started by asking Nathan a few questions about his philosophy and his goals in life. Nathan was mildly grumpy about having been dragged to this boring thing he didn’t care about. Sometimes when he has that attitude he’ll give short answers, or won’t talk at all. I was glad that on this day, he answered the judge’s questions frankly. Judge R seemed genuinely interested, at one point leaning his chin on his hand and telling Nathan that he should write a book about his world view: “I think a lot of people would want to read what you have to say.”

The judge then let Dr. M ask questions. Because Nathan was seated closer to Dr. M than I was, Nathan couldn’t see my reactions as we looked left toward the medical expert.

Dr. M started off by saying, in a loud voice, something like this: “I would like to know, WHAT kind of a game do you think you’re playing? Do you expect anyone to believe that an intelligent, able-bodied young man like yourself is not capable of holding a JOB?”

My head went back, my mouth opened, my cheeks flushed. It was over. Dr. M was voicing all the skepticism I had feared would be the official position. I thought, this is why the attorneys had stayed away. They’d known.

“I’ll bet you don’t even want to receive benefits,” Dr. M went on.

Startled, Nathan said, “No, not really.”

“Then what’s stopping you, young man, from turning to the judge right now and saying we should end this proceeding – that it’s a waste of everyone’s time?”

“Really? I can do that?” Nathan asked.

Disaster. Mayday, Mayday! At this point I stopped looking at the ceiling and gave Dr. M a look – the one that means “Seriously?!?”

Nathan fidgeted as he decided whether to tell the judge to forget it, knowing I’d be plenty irritated (to put it mildly!) if he did.

Dr. M met my gaze. He raised his eyebrows and lowered his head a little, sending me the message, “Wait, and watch.” I took a deep breath and fiddled with the documents I had thought could prove our case. But if Nathan says he doesn’t want the benefits, what did it matter that he met the criteria for being disabled? The government wouldn’t force him to take the money, right?

Nathan started to speak but Dr. M talked over him, drowning out whatever Nathan might have been trying to say to the judge. Dr. M grilled Nathan a little more on his philosophy, asking if he’d ever heard of Jean-Paul Sartre (Nietzsche is a closer match to Nathan’s views, but whatever). After Dr. M talked a few more minutes, Judge R said something like, “Are you ready to give your findings?”

Dr. M said yes, and then started talking very fast, almost like the disclaimers you hear at the end of car commercials. He rattled on about “under Part A” and “Listing 12-point-[something].” Trying to keep up with what he was saying, I rustled through the pages I’d printed out from the Internet about SSA’s criteria. It wasn’t helping.

At one point Mr. S, who hadn’t spoken the whole time, leaned toward me. He whispered five words: “That means you got it.”


I looked up at Mr. S in disbelief. He smiled kindly. Judge R was smiling a little too. If this had been a movie, that’s when the music would have swelled.

Apparently, somewhere in Dr. M’s onrush of words had been the conclusion that he’d found Nathan to be disabled, and once he’d said it, there was no need for further discussion.

Dr. M came to the end of his pronouncement. Now it was the judge’s turn to talk quickly. I remember hearing the phrase “up for review in 18 months”, and the recommendation that we pursue “aggressive psychotherapy” for Nathan.

Then the men stood up and wished us well as I thanked them all. Nothing in my life has ever equaled the compassion I felt coming from those three gentlemen as we said good-bye.

Numbly, I exited the room with Nathan. We got it?! What a rollercoaster! And I hadn’t even needed to be lawyer-like after all! We got it…

Had the decision been made before we entered the room? Had Dr. M just been putting on a show, with all of his challenging statements? But why?

Nathan and I went down the stairwell. “So Mom, I guess we didn’t get it, huh?” he said in the tone of, see, I knew this was a dumb idea.

He hadn’t grasped what had happened. As casually as possible for a person ready to crumple with relief and gratitude, I told him, “You know, actually, we did.”

Applying for SSI – Part 5: preparing for the appeal

When you get the letter stating that your request for reconsideration was denied, you also get a form to request an appeal before an Administrative Law Judge. The request must be filed within 60 days. I quickly sent the request, and then started looking into attorneys.

There are a number of attorneys who specialize in SSI and SSDI appeals. You may have seen some of their ads on TV, on billboards at bus stops, on the covers of phone books, etc. I picked three in our area, looked at their websites, and contacted their offices by phone.

Here’s the good news/bad news about hiring an attorney. Good news: if they don’t win the case, you don’t have to pay them.

What’s the bad news? It isn’t the fact that you have to pay the attorney if s/he wins; that only seems fair! Here’s how it works: If the attorney wins the appeal, not only will the monthly payments for the claimant start coming, but the SSA will send backpay that covers the amount the claimant should have been receiving, from the date of the initial application onward. This is typically thousands of dollars. The attorney will get 25% of that. Usually the SSA routes the 25% directly to the attorney, and the claimant receives the balance of the backpay.

No, the bad news is that the attorney won’t take the case if s/he doesn’t think it is winnable. And that’s what we ran into.

Of the three attorneys I contacted that spring, I spoke to one directly on the phone.  He was very patient in explaining what we would have to prove in order to win the case (which was pretty much the Residual Functional Capacity stuff I wrote about in Part 2). At the time, because Nathan was living independently, had graduated high school, and had never been hospitalized or arrested, it didn’t seem like he met SSA’s criteria for being mentally disabled. The attorney said if anything changed for the worse, I could call him back and he’d look at the case again.

For the second law office, Nathan and I were given a face-to-face appointment with a paralegal. Here, I could show her our best supporting documents. And she said, I’m sorry, but this isn’t strong enough. But if anything changed for the worse, we could give them a call.

For the third law office I called, I was transferred to a paralegal. She also said the case was too weak. A couple of additional things I learned from her: because the system was so backlogged, the hearing wasn’t likely to happen for at least a year. And, any attorney would probably want to start preparing the case about six months before the hearing was likely to occur. Their office would need time to request paperwork from the mental health care providers who hadn’t come through yet (like Nathan’s psychiatrist Dr. W, mentioned in Part 4). This meant, if I were going to hire an attorney, I’d have about another 3 to 4 months to find one.

I found myself wondering if we should be “rooting” for Nathan to have a bad episode in the next four months so that an attorney would take the case!  In trying to support him to be as functional as possible, had we positioned him in this neverland between “clearly disabled” and “OK”, where no assistance was available? Should we stop paying for his apartment, to render him homeless?

Then a couple of big distractions came up in my life: for the first time in years I was given a project to manage at work, and my husband and I decided to move (the first time in 20+ years) to the town we work in. The move proceeded very quickly, leaving little time for focusing on anything else.

In early October we had been in our new house for only a couple of weeks when a letter from the SSA Office of Disability Adjudication and Review (ODAR) arrived. Surprise! The hearing was scheduled for the afternoon of November 2. No time to hire an attorney, and I had less than a month to prepare. (The elapsed time between filing the appeal and getting the hearing was 9 months, not “at least a year.” This was one time I was sorry the federal government was more efficient than I had expected!)

The letter stated I could fax or mail additional supporting evidence to ODAR. When I called for clarification, they told me it was best if the judge received the new evidence at least a week in advance of the hearing, but it could be submitted the day before if necessary. I could also request a CD of all the documentation the SSA had collected: what I had supplied, and what they had gotten from (some of) Nathan’s mental health care providers. I requested the CD, and it came pretty quickly.

Was there anything else I could do (besides panic)? I faxed a few extra pieces of documentation to ODAR. And amidst the unpacked boxes at home, I snatched moments here and there to review what I’d learned in the spring and to look at additional websites. That’s when the whole “residual functional capacity” thing popped into better focus for me. I downloaded an RFC form and faxed it to Dr. W on the 19th, pleading for him to complete it within ten days. I also gave the form to our family counselor, who had been seeing Nathan weekly since the beginning of the year. She had told me the judge usually doesn’t put much weight on the opinion of non-psychiatrists or non–psychologists, but I figured there was nothing to lose by getting her input.

Ten days passed, and I hadn’t received the form back from Dr. W. His office staff had no record of it. I faxed it again with another pleading note. Meanwhile, our family counselor had started on her form, and promised to complete it in time.

On Halloween weekend, Dr. W finally faxed me the completed form. He even faxed me corrected pages after I’d found some blanks and some contradictory answers. Better late than never…. I studied his answers against SSA’s criteria (Parts A, B, and C) for psychiatric disability.

It looked to me like Nathan would qualify! On a piece of paper to take to the hearing I outlined my understanding of how Nathan met the criteria.

A night or two before the hearing I looked online one more time, and something else that I’d seen before popped out at me: Global Assessment of Functioning. (We will now pause while everyone reading this comes up with scores for themselves, relatives, and acquaintances. I’ve wondered if some mental health care providers go around thinking about GAF scores for random people they meet: “Whoa! She’s definitely in the 60s!” Dr. W once told me that no one gets 100, except maybe people like Mother Teresa.)

Ready to keep reading? OK, so GAF scores had appeared in five evaluations done on Nathan over the years. As you’ll notice in the “criteria” hyperlink above (to the Serrano Lawyers website), to qualify, a claimant’s GAF scores “usually have to remain in the range of 50 or below despite treatment.” A claimant with GAF scores in the 50s may qualify if certain other conditions occur.

Nathan’s five GAF scores had ranged from 30 to 58, with 58 being the only one over 50. Another piece of evidence in our favor! I added it to the piece of paper to take to the hearing. (Why hadn’t the attorneys asked me about this?)

Finally, our family counselor handed me her RFC form the evening before the hearing. It supported what Dr. W had said, and then some. She also had prepared a two-page letter about Nathan’s frame of mind. It was (and is) depressing to read, but I was glad to receive another compelling piece of evidence. I faxed this paperwork to ODAR the morning of the hearing, calling first to make sure the judge’s office knew it was coming.

Needless to say, my GAF score that morning was probably in the neighborhood of 75 – 85. Difficulty concentrating? Check. Mild anxiety? Check.

Then at last, it was time for the hearing.

Applying for SSI – Part 4: Request for Reconsideration

It’s been months since I last blogged about applying for SSI. Not the most gripping subject matter, but if the young person is unlikely to be able to support himself or herself due to mental health challenges, it is really, really important subject matter. So from here on I’ll try not to drag this topic out quite so much, especially because there are other financial topics to address once we’ve gotten through this.

Request for reconsideration is what you do if your initial SSI application is denied. You may recall from previous posts that people who are young are more likely to be denied benefits, as are people with mental (as opposed to physical) challenges. Since we are talking about young people with mental health challenges, being denied is a very good possibility.

You have 60 days after receiving word of the application’s denial to file for reconsideration. During reconsideration, a different claims examiner reviews your initial application, plus any new supporting evidence you or other people can provide.

I like how the following link explains the realities of this phase of the application process: appealing an SSI benefits denial.

You’ll need to know what the Social Security Administration wants you to do to request reconsideration, so here’s the link for that: This information will also be in the letter you receive from SSA.

As you can see, there are a few more lovely forms to fill out. Mainly, the forms ask you to state why you disagree with the decision, and they want updates to the claimant’s condition since the initial application: doctor’s visits, hospitalizations, new medications, etc. You of course would want to document things that indicate the claimant has gotten worse or at least has not improved.

In Nathan’s case, I was tweaked because the initial application was denied before SSA had heard from his current psychiatrist (whom we’ll call “Dr. W”). Before submitting the request for reconsideration forms, I called SSA and pointed this out. The person I spoke to said I could state on the reconsideration forms that I didn’t want a decision to be made without the input of Dr. W. All right, so this time we’d have a better shot at being approved, right?

I’ll bet you saw this coming: a little over two months after filing the reconsideration paperwork, we received a letter from SSA saying that the first decision was correct, and Nathan still was not eligible for SSI. The letter listed supporting evidence they had received in the interim. Was Dr. W on that list? No he was not. My statement about needing Dr. W’s input had been ignored, or it was trumped by SSA’s determination to move things along. I hadn’t been informed of the timeline for making the reconsideration decision, nor was I informed that Dr. W still hadn’t supplied any input. I probably should have called SSA to find out after about a month had passed.

But it didn’t really matter too much, since very few requests for reconsideration end up with a reversal of the initial decision. It was time to advance to the next step: I had 60 days to request a hearing before an Administrative Law Judge. What happened with that hearing will be the subject for one or more future blog posts.

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