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.”

Whew!

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!

 

 

Advertisements

Tags: , , , , , , , , , ,

About janet565

I've lived in the Inland Empire of Southern California since 1982. Born and raised in New Jersey, I've also lived in upstate New York and in Oregon. My profession involves maps and geography, which is usually very interesting. My hobbies are pretty boring - none of them involve tigers (or ligers) or jumping out of aircraft - so they do not bear mention here. I hope you find the blog useful, and wish you well....

6 responses to “SSI Continuing Disability Review: our experience”

  1. Karen says :

    Thank you for sharing. It’s important that other parents of adult sons and daughters with special needs, receiving SSI, know exactly what to expect. Everything you shared about the process is normal. Yes they have the right to, and usually do, review every child and adult’s disability eligibility every 3 years. With all the accompanying paperwork and possibly interviews and free evaluations. Also, FYI to parents of minors receiving SSI at the moment, when your son or daughter turns 18, this review takes place. And Social Security is only interested in the past year’s new documentation. So as usual, please keep all evaluations handy!

    Like

    • janet565 says :

      Thanks for your comments, Karen! I shared our experience mainly to let others know what to expect. As a taxpayer, I’m totally fine with SSA reviewing cases, to guard against fraud and so forth. Their diligence showed me that these reviews aren’t just “going through the motions,” but really take a close look at the abilities of SSI recipients. Next time, I’ll know better what to expect!

      Like

  2. Kathie Allen says :

    Thank you for your thorough and comprehensive review! I very much appreciate the time it takes to write such a post. Thank you again!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

our sacred breath

finding the calm in the chaos of FASD

Eating Off Plastic

An illustrated blog about neurological misfortunes and some other things

Scribbles & Crumbs

Hope. Kindness. Faith. Love

Glass Footsteps

The Experiences and Opinions of a Teenager on the Autism Spectrum

Autistic Celt

Irish, Celtic, European cultures, autism/disability issues

Teachezwell Blog

A fine special education site

Debbie Oveland, FNP-BC, Special Needs Consultant

This WordPress.com site is the cat’s pajamas

The Elephant in the Room

Writing about my experiences with: depression, anxiety, OCD and Aspergers

The Persistent Platypus

Life's journey may not always be easy, but being true to your unique self and finding laughter in the small things makes the adventure unforgettable!

Transition Universe

Information, Resources and Inspiration for Educators, Parents and Transition Youth

Phoenix - The Rebirth of My Life

Raise mental illness awareness. Stop the stigma. Save a life.

Grady P Brown - Author

Superheroes - Autism - Fantasy - Science Fiction

A Journey With Asperger's

A great WordPress.com site

Despair to Deliverance

A True Story of Triumph Over Severe Mental Illness

The Frog's Tale

Sex, lies and abuse - a memoir

Cassie Zupke

Helping Parents and Teachers of Students and Young Adults with Asperger's/Mild Autism Find Their Way, One Step at a Time.

Chronic Disease Recovery

America’s leading doctor using genetic testing for enhanced chronic disease recovery

Academy MetroWest's Blog

Thinking Out Loud About Social Skills & Quirky Kids

Positively Atypical! by Dr Rita Eichenstein

Support for parents of children with learning disabilities, ADHD, or Autism Spectrum disorders

%d bloggers like this: