Much misunderstood: Non-verbal learning disorder

When you first saw the term “non-verbal learning disorder,” did you think it meant that the people with this condition are nonverbal? That’s a common misunderstanding – one of many associated with NVLD (or NLD).

In fact, people with NLD are quite verbal. Where they have difficulty is in non-verbal areas (ah, now it makes sense!): things like finding their way around, reading between the lines, picking up on body language, seeing the bigger picture.

In short, individuals with NLD have difficulty integrating information, which ends up with them misunderstanding parts of their world. People in their lives often don’t understand why. Furthermore, NLD traits are often misunderstood by psychologists and other clinicians, leading to misdiagnoses and treatments that don’t help: a prime example of a Cinder Cone “falling through the cracks” situation.

It’s hard to say how common NLD is in the population. A few of the sources I looked at estimated that it affects 0.1% to 1% of the population, but I saw one that said it’s probably as common as dyslexia (estimates there range from 5%-20%). I also read that NLD affects males and females equally, and tends to run in families.

Because it traditionally has been a poorly understood condition – one that wasn’t on the radar screen of most parents, educators, and mental health professionals – many cases of NLD were not identified in childhood. This hidden disability is often diagnosed for the first time in adulthood, if at all.

If someone in your life is struggling with parts of school, work and social life but doesn’t quite seem to fit the profile (or respond to treatment) for autism spectrum, ADHD, or sensory processing disorder (SPD), check out this list of NLD characteristics, presented in no particular order:

  • too literal; often doesn’t pick up on sarcasm, nuance or jokes
  • good verbal skills, but struggles with reading comprehension (the big picture) and with organizing thoughts when writing
  • too rigid: routines are overly important, doesn’t handle unexpected disruptions well
  • overshares information, keeps talking long after listeners are ready to move on, interrupts conversations
  • anxious about socializing (an especially big problem for teens) – no one seems to “get” them
  • clumsy; may have challenges with fine motor skills also
  • difficulty interpreting graphs and charts
  • trouble with spatial orientation; not good at reading maps
    • can be disoriented even in familiar places
  • difficulties with planning, difficulty setting priorities
  • trouble following multi-step procedures
  • hard to stay focused
  • OK with arithmetic, but struggles with higher math

A person with NLD may not have all of the above characteristics, and the severity of each can vary depending on the individual. (And it’s certainly true that these traits are also found in the general population!)

Some of these characteristics are also present in ADHD, autism or SPD. To make things even more complicated, an individual can have one or more of these diagnoses.

Even so, it’s worth noting the differences in the traits. For instance, people with ADHD welcome variety and change; people with NLD tend to be thrown off by disruption.

And here’s a distinction between NLD and autism spectrum disorder: people with the former are verbal thinkers, while those with the latter are visual thinkers. With an NLD brain, you need words to conceptualize a picture or place. With autism, a picture or place is visualized in the mind without words.

To restate the relationship between people with NLD and words: they are highly verbal and depend on words when thinking about the unseen, and when finding their way around. On the other hand, they struggle to extract the big picture from the words they read or hear, and to understand what’s left unsaid. What a complicated relationship with language!

Over a lifetime, NLD can make individuals feel odd or incompetent, even if they have learned to compensate. Struggles with depression and/or anxiety often result.

Meanwhile, the neurotypical world misunderstands the nature and depth of how NLD affects someone, since the challenges are masked by strong verbal skills.

What’s a person to do? If you suspect NLD, seeking out a neuropsychologist is the best route to getting a meaningful evaluation and an accurate diagnosis.

Unfortunately, NLD isn’t included in the DSM-5, and in the US it isn’t covered by IDEA, meaning that a child with that diagnosis and no other isn’t eligible for an IEP or a 504 plan in school.

It’s not all doom and gloom, though. For one thing, here are some positive traits often associated with NLD:

  • above-average to superior intelligence
  • able to recall details of passages read
  • creative
  • resourceful
  • honest
  • fair-minded
  • sweet
  • advanced conversation skills (noticeable in children)

Occupational therapy and social skills training can help people of any age with NLD.

Two online resources I found that are devoted to this disorder are NLDLine and the NVLD Project. Websites devoted to learning disabilities in general also have information.

Young people with NLD can succeed in pursuing higher education. It helps if they get assistance from the school’s disability resource center.

If you’re wondering about suitable jobs, here’s one person’s informal suggestions of careers that might be a good fit for individuals with NLD.

Now I’ll close with a request: if you’ve had experience with NLD, please post a comment to let us know about your struggles and successes!

^^^

Sources (other than those linked to above):

General information

https://www.additudemag.com/nonverbal-learning-disorder-symptoms-in-adults-breakdown/

https://www.additudemag.com/what-is-nonverbal-learning-disorder-symptoms-and-diagnosis/

Anecdotes

https://www.understood.org/en/learning-attention-issues/personal-stories/stories-by-adults/5-questions-with-peter-flom-statistician-with-a-nonverbal-learning-disability

https://themighty.com/2017/01/living-with-nonverbal-learning-disorder/

https://ask.metafilter.com/116901/What-to-expect-from-an-adult-with-NLDNVLD

 

 

 

 

 

 

 

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Health insurance after 26: Got it!

One of the more popular posts on the Cinder Cone has been this one about health insurance for young people with disabilities. As the debates about health insurance swirled around Washington this year I wondered whether I’d need to “repeal and replace” the post’s content with whatever scenario emerged from that mess. At this writing, no change is needed.

In related news, we were able to keep Nathan on my medical, dental, and vision insurance after he turned 26 this year. Because a couple of surprises occurred along the way, our story is worth sharing here as a cautionary tale.

Nathan had been on my husband’s insurance from infancy. But when I started working for a large employer last year, it made sense to move Nathan from his dad’s insurance (through a very small business) to my insurance.

Last fall, while Nathan was still 25, I filed the forms to add him to my coverage.

His eligibility was verified by a third party, not by the insurance companies. I provided a scan of his birth certificate, and also had the option of submitting paperwork to prove that he has an ongoing disability.

It was my understanding that filing the proof of disability at the time of enrollment would lead to smooth sailing when Nathan turned 26 several months later. They’d already know he was disabled. No further hassle.

Since earlier in the year we had received the letter from Social Security stating that Nathan was eligible to continue receiving SSI payments, I scanned and uploaded that sucker! What better proof of disability?

A few weeks later, the third party agreed that Nathan was my son. He was added to my medical, dental, and vision coverage. Yay.

Three months prior to Nathan’s birthday this year, imagine my surprise to receive a letter from my dental insurer. It pretty much said, Hey, your son is turning 26 soon, and we’ll drop him unless you can submit “a letter from a medical provider verifying that your dependent is disabled.” Have a nice day.

I was perturbed for two reasons.

First, I thought I’d already covered this with the SSI letter at the time of enrollment.

Second, Nathan no longer has a medical provider familiar with his diagnosis. It’d been years since he’d seen a psychiatrist (= physician). And he’d stopped going to a psychologist (= not a physician) in 2015.

I told the health care facilitator (HCF) for my employer about this puzzling turn of events.

She couldn’t really respond about the third party verification issue, but affirmed that I’d have to come up with the requested documentation now.

But, she added that although I’d received a letter from the dental insurer, I should file proof of disability with the medical insurance provider. If they accepted that Nathan is disabled, the dental and vision insurers would follow suit.

She emailed me the disabled dependent certification form I’d need to submit to my medical carrier.

It was only one page (hooray) but the key section was “to be completed by attending physician.” Dang.

I explained our no-physician situation to the HCF, who checked with the medical carrier. She found out that “if the main provider diagnosing your son is a psychologist, that provider can complete the certification form.”

Yay. I’d had a good rapport with Nathan’s last psychologist, so I didn’t feel too awkward asking him to fill out the form.

I left a voicemail. Two weeks went by with no response. Had he retired, and neglected to shut off the “You have reached the voicemail of Dr. K____. If this is a life-threatening emergency, please hang up and dial 911” message?

I left another voicemail. Another week went by before Dr K called back.

He’d be happy to fill out the paperwork; “I’d do anything for Nathan,” he emphasized. He recapped for several minutes how much he’d enjoyed their sessions, and why he felt Nathan was unlikely to ever hold a job for long. I thanked him profusely, and that night sent him the certification form with a self-addressed stamped envelope.

Two weeks went by. I left another voicemail.

Finally, the sought-after envelope showed up in our mail a week later. Retaining a copy, I sent the filled-out form to the HCF via interoffice mail, and she sent it to my medical insurer.

A few weeks went by, until she emailed: my insurer had accepted Nathan as a disabled dependent. He would continue to be covered.

End of story? Not quite.

I had to contact the HCF one more time a few weeks later, because we’d received another pleasant letter from my dental plan. It was a repeat of the initial letter, except now it noted that Nathan’s 26th birthday was a month away. Had the dental and vision plans gotten word of the medical plan’s decision?

In response, the HCF updated my records in the system to show that Nathan was an approved disabled dependent. That information would be transmitted electronically to my dental and vision carriers.

The whole process was now finished, three weeks before Nathan’s birthday. Whew!

And everything has been fine.

I sent a note to Dr K and an email to the HCF, thanking them for their efforts that resulted in our family’s peace of mind.

Here are a few lessons learned from this mini-saga:

Disability documentation provided to a benefits eligibility verification outfit doesn’t mean that the insurers themselves will automatically be on board.

It doesn’t hurt to clarify the terms used on a disabled dependent certification form. I would have been scrambling even more if I’d assumed we truly needed input from a physician. However, I’m not sure all health plans will include psychologists or counselors under their umbrella of “medical provider.” Best to verify such things early on.

Don’t delay in taking action! I started doing stuff three months before Nathan’s birthday, but as you saw, we only got things finalized with a few weeks to spare. Two months prior to his birthday, my medical carrier had also sent me a letter about my dependent turning 26. Since it ended up taking 2 1/2 months to get everything in place, I’m glad the dental carrier’s letter had arrived at three months prior.

Have you been through disabled dependent certification for your neurodiverse 26-year-old? What was the outcome? Let us know!

 

 

 

 

The gut-brain connection

Do you remember learning about the systems of the human body? It’s pretty amazing, when you think about it – all the biological, chemical and physical processes going on so that we can move, think, and do what we do.

For instance, when our digestive system does its job, our body gets the energy and raw materials to make all these processes happen. Yup, that’s all our digestive system does … OR IS IT??

Increasingly, scientists have been researching the two-way communication between the brain and the gut. That’s right: two way. Not only does our bossy brain send signals to our intestines; what’s going on in the gut can influence what’s going on in our noggin.

“Well sure,” you might say. “When I have intestinal distress, I get cranky and worried.”

Point taken. But we’re talking about an influence extending much beyond those times of woe.

In a further surprise, many researchers are focusing not on the actual intestines, but what’s living inside them.

From what I see being reported lately, the focus is on the bacteria in our gut – something like 40 trillion of the little darlings, according to this article in Medical News Today. While 30 to 40 species of bacterial beasties typically occupy human intestines, there can be any of 1,000 varieties.

Instead of calling them out one by one (now that would be a long blog post!) let’s refer to the bacteria collectively as the microbiome. The main point is that imbalances in the composition of the microbiome have been linked to anxiety, depression, memory functioning, hyperactivity, obsessive-compulsive disorder, and autism.

(Regarding autism, here’s a quote from the Medical News Today article: “Children with autism often have abnormal and less diverse communities of bacteria in their gut.” Wow.)

Furthermore, early indications are that changing the composition of the microbiome can lessen some adverse mental traits.

The studies most often involve lab mice – depressed or anxious mice, or mice that have learned something and then have their microbiome messed with. (Laboratory mice: we salute your service!) You can read about some of the experiments here. For instance, bacteria transplanted from a daredevil mouse to a chronically anxious mouse makes the anxious mouse braver.

A mouse reading this news is bound to be fascinated or very concerned, but of course the real point of these experiments is whether we can get the same results in humans. Limited studies with people have shown promise so far.

Even so, we are probably years away from this kind of therapy being readily available. A Science News article talks about what stands in the way:

Figuring out what’s being said in this body-microbe exchange, and how to shift the tone in a way that improves mental health, won’t be easy. For starters, no one knows the exact ingredients for a healthy microbial community, and the recipe probably differs from person to person. And it’s not always simple to deliver microbes to the gut and persuade them to stay. Nor is it clear how messages travel between microbes and brain, though scientists have some ideas.

Scientists do know that certain species of gut bacteria produce neurotransmitters that influence mood and behavior, as shown in a table in the Science News article. The vagus nerve, which connects the gut and the brain, seems to play a part in the communication. The immune system could also be a player. We need to understand more before we start mucking about with widespread treatments.

You might ask, what exactly would be done to change the microbiome in a human body for the better?  One medical procedure that I’ve seen discussed is not at all pleasant to think about. Two words: fecal transplant. Yuck!

If you managed to keep reading past that last paragraph, you’ll be happy to know that the microbiome can also be changed by what we ingest. You’ve probably seen products that boast of containing probiotics, or good bacteria. These include particular types of yogurt, kefir, and supplements containing probiotics.

One of the scientists doing research in this area is Mark Lyte, at the Texas Tech University Health Sciences Center in Abilene, Texas. Read his poignant but cautionary quote from an article in the New York Times:

‘‘My main fear is the hype is running ahead of the science.’’ He knew that parents emailing him for answers meant they had exhausted every option offered by modern medicine. ‘‘It’s the Wild West out there,’’ he said. ‘‘You can go online and buy any amount of probiotics for any number of conditions now, and my paper is one of those cited. I never said go out and take probiotics.’’ He added, ‘‘We really need a lot more research done before we actually have people trying therapies out.’’

To make potentially beneficial changes to gut bacteria, one could also add more foods with prebiotic properties to the diet. Such foods encourage the growth or activity of good bacteria (probiotics). Foods that are notable sources of prebiotics include garlic, onion, asparagus, leeks, dandelion greens, and wheat bran.

Rounding out my literature review of the topic is this article from Psychology Today. The whole article is interesting, but it has a few passages that may apply in particular to our neurodiverse kiddos. See what you think:

In addition to influencing daily functioning, there is also growing evidence that there are particular “windows” during development of the nervous system when its very threshold of responsiveness is set by the diversity of bacteria that make up the microbiome. Those periods—pre- and perinatal development and again at adolescence—may be especially critical in creating susceptibility to or resilience to stress throughout the lifetime.

***

Antibiotic treatment of infection, consumption of a poor diet, and stress have all been shown to disrupt composition of the gut bacteria, affecting the substances such bacteria produce and the signals they send. But it may be that diet, antibiotics, and stress also change the function of the gut in ways that activate immune cells, which, by stirring inflammation in the brain, induces psychiatric symptoms.

Adolescence is a period when brain connectivity undergoes major change. It is also a time when many psychiatric disorders first appear. According to neurovirologist Robert Yolken, adolescents may be especially susceptible to the psychiatric effects of gut-bacteria shifts resulting from antibiotic use. Infection prevention and control, in fact, may be the next frontier of mental illness treatment.

What? You mean we parents shouldn’t have given our kids all those rounds of antibiotics prescribed for ear infections and the like?

Let’s all try not to sink into a puddle of guilt over possible neuropsych disruption caused by what in our house was called “pink medicine.” It’s uncertain what’s really causing all these brain-gut relationships. Is the brain in charge, or is the bacteria, or is it both sometimes, or do they ever trade? So much is still unknown.

I’m interested to see where the findings will lead. No one should be making any promises yet, but if our struggling neurodiverse kids are willing to get more probiotic or prebiotic foods in their diet, it seems like doing so may turn out to have brain benefits as well as general health benefits.

 

John Elder Robison and TMS therapy

John Elder Robison is and has been many things: author, autism advocate, educator, creator of special effects for rock concerts, parent, engineer for Milton Bradley, government advisor. He is also a thought-provoking and entertaining public speaker, as I learned at a recent presentation.

He spoke on the campus of University of California, Riverside, at the invitation of its SEARCH Center. (“[T]he mission of SEARCH is to provide support, education, advocacy, resources, community and hope to families who have loved ones on the autism spectrum.”)

I first became aware of Mr. Robison several years ago when an acquaintance who has a son with Asperger’s recommended reading Robison’s book Look Me in the Eye. In it, Robison describes his turbulent childhood, teen, and young adult years with undiagnosed Asperger’s.

One of Robison’s current pursuits is advocating for the autism community to unite, find their voice, and stand up against discrimination and negative media coverage. He began his talk at UCR by describing the parallels he sees between the harsh treatment people with autism face and the discrimination Jews, blacks, and the LGBT communities have faced. Society became more accepting of those groups once they organized and became vocal about not being lesser humans. People with autism must do the same.

Robison said that by the time people on the spectrum reach young adult years, they’ve repeatedly absorbed the message (through words, actions, or reactions) that they are failures. As a result, their motivation to engage in the world is very low. Thus we have a generation of people with ASD (autism spectrum disorder) “hanging out in the basement,” with their talents and gifts untapped. In Robison’s view, organizing a movement to increase society’s acceptance is the way to break this cycle.

He shared that some researchers believe that the brains of people with autism have more plasticity than is found in neurotypical brains. In the extreme, this plasticity may account for the abilities of savants, It also leads to the exceptional skill many people with autism develop in fields that interest them. However, researchers speculate that the flip side of this increased plasticity is emotional blindness.

At this point in the talk, Robison reminded the audience that his memoirs document how he was chronically oblivious to the emotions of everyone else. Then he asked us, why would someone like that invest his time to advocate for others, as he’s doing now?

He credits his increase in empathy to having received experimental TMS treatments beginning eight years ago – the topic of his newest book Switched On.

TMS, or transcranial magnetic stimulation, targets specific areas of the brain with magnetic pulses to increase function. It’s noninvasive and has few side effects. So far in the US, the FDA has approved its use in treating depression that has been unresponsive to medication. Robison was part of a clinical trial to see if TMS can alleviate the emotional blindness of people on the spectrum.

After his first session, he was disappointed that his ability to interpret emotions from facial expressions (as tested by the researchers) had not improved. However, other things did change. The first thing he noticed was the extreme clarity with which he heard and appreciated every element of familiar music recordings. The researchers told him this was a side effect.

With continued sessions, he experienced other effects related to emotions – not all of them having welcome outcomes:

  • For the first time in his life, he became emotional about tragedies that befell people in other parts of the world.
  • His wife’s depression, which had never bothered him before, affected him so much that they had to divorce.
  • He can’t go to movies, because their emotional impact causes him to cry a lot.
  • He realized that most neurotypical people, far from being the happy, fulfilled, caring people he’d imagined them to be, walk around burdened with sadness, fear, anger, and greed.
  • He almost became suicidal. The clinical staff pointed out to Robison that unlike most people, he hadn’t had a lifetime to adjust to feeling emotions.
  • He can now collaborate successfully with others. Before, his successes had only resulted from creating things on his own.

***

If you’d like to read more about the potential of treating autism symptoms with TMS, here’s a clear, cautious article written by Lindsay Oberman, a TMS researcher at Brown University. This report from NPR also emphasizes caution in interpreting the results of the few trials that have been conducted to date.

Overall, there’s widespread agreement that more studies are needed, to investigate concerns such as which parts of the brain to treat, how frequently, with what dose, and at what age. Those interested in participating in a study of TMS therapy for autism symptoms can check out the US National Institutes of Health Clinical Trials website.

TMS is also being studied in relieving disorders such as anxiety, addiction cravings, adult ADHD, obsessive-compulsive disorder, and schizophrenia. If studies on these or other disorders are of interest, you can change the search term on the Clinical Trials webpage to see if any are being conducted in your area.

***

Going back to Mr. Robison’s talk: he summarized by saying that TMS has the promise of an emerging technology. As with other types of therapy, it’s not for everyone, but it’s probably good for some.

And while we all welcome the expansion of the toolkit for treating problems associated with autism, Robison believes the most powerful way to improve the situation of people on the spectrum is through forming an active, vocal community.

 

 

Small successes

This summer I took a new job in a new profession. The whole process of applying for, transitioning to, and now learning the job has gone really well, but leaves me with little “bandwidth” to create blog posts! From here on out, posts will most likely be less frequent, or written by guest writers, or reposted from other blogs, or written by me but with less research behind them.

The subtitle of Climbing the Cinder Cone is “Resources for atypical young people.” At present, I don’t have anything to share about programs, therapies, or approaches to try; today, I can only offer small stories of the progress we’ve seen in our older son Nathan. In a way, these kinds of stories are a resource, since they may provide you with Hope – and that can be a Very Important Resource indeed.

Over the last year or so, I’ve shared that Nathan (now in his mid-20s) has been ready to find part-time work. That in itself is huge!

This past spring, he went on his first-ever job interview. After submitting many applications with no result, he was excited about finally getting to the next step.

The opening, at a big home improvement store, included stocking shelves (which is the type of job he wanted) but also customer service (not a good idea). We hoped that during the interview he could talk about his unique character traits and see if, for him, they might adjust the duties to primarily stocking shelves.

We offered to rehearse job interview questions with Nathan, but he declined. He did accept our advice on what to wear. Unfortunately, since he had just cut his own hair, he was sporting a couple of bald patches.

Another concern was making sure he knew how to get to the store. We would be out of town at a funeral on the day of the interview, but Nathan didn’t mind walking the two miles to the store.

On Interview Day, Nathan called us several times; luckily, the calls occurred between events at the funeral. Most critically, right before the interview itself the store had him re-enter almost all of the information from his application. Nathan hadn’t brought the piece of paper where he’s got those kind of details written down, so Mom and Dad had to dictate the answers to him (including spelling).

He called us one last time (between the interment and the reception) to tell us the interview had gone poorly. They’d spoken with him and another candidate at the same time, asking a lot of hypothetical questions about problems with customers and coworkers. He realized at the time he wasn’t answering the questions well.

While Nathan was disappointed to have missed out on that job, he didn’t go into a downward spiral. We told him it was great that he had followed through and had given it his best, despite the difficulties.

A few months and a couple of applications later, Nathan got called to interview for stocking shelves after hours at a large toy store: a good fit for him!

Several things went better this time:

  • He put aside his sensory issues and, for the first time in years, allowed his dad to cut his hair (and afterwards said the process doesn’t bother him any more!)
  • Unbeknownst to us, Nathan had been practicing interview questions and answers on his own.
  • The interview started with a group of applicants being instructed to cooperate in work-like tasks while the HR people observed. Three red flags: it was a surprise to Nathan; he’s never liked group work; and he doesn’t do well with strangers. Despite all that, afterward he reported being surprised with how well he handled himself.
  • He felt good about his performance in the interview.

The last time we can remember Nathan saying he felt good about something he’d done? Maybe at the start of middle school, but probably elementary school – and it was rare even then.

Nathan didn’t get the toy store job either. I’m not sure he’ll be able to land a job without the support of an agency that helps people with disabilities. He runs hot and cold on signing up for help, but is OK with submitting more applications, at his own pace.

He isn’t frustrated, and neither are we. Anyone who has a loved one with a history like Nathan’s will know what it means to see improvements in persistence, grooming, people skills, frustration tolerance, handling unwelcome surprises, and positive self-appraisal.

Five years ago we certainly wouldn’t have believed it possible, but now we dare to have hope for his future.

Transition tools

The contents of this post come to you courtesy of Mary Mazzoni, who has put together the tremendously helpful blog Life After IEPs. And yes, there is life after IEPs and special education, even as many of the institutional supports available during the K-12 years go away after the student finishes school.

Being prepared for the issues faced during transition to adult life can make a big difference for you and your kiddo. One way to prepare is by soaking up the tips and wisdom found in sources like Life After IEPs.

Recently Mary sent blog subscribers a letter with links to updated versions of the most popular posts on Life After IEPs. She agreed to let me share an excerpt of the letter with you. That’s what you’ll find below!

School buses will soon be rolling again – and you’ll want access to key resources for your teen’s self determination and transition planning.
I’ve updated the following popular posts so that you can easily link directly to free tools and strategies that will get the school year off to a great start!
Six Strategies for a Positive School Year:
Transition Portfolios:
Free Transition Tool Shop:
The Tool Shop connects to many posts that describe and link to a wide variety of free transition tools. Please note – The schools, universities and agencies that created these tools sometimes change their links.
If a link within a post is no longer working – you can:
 – try to “Google” the tool named in the post – or,
 – email me and I can find the new link and update my post.
Keeping links current is a never-ending job! Please contact me if you have any questions!
Take Some Time to Consider – What Matters Most
Our time is limited – we can’t do everything.
As the new school year begins – lets take time to reflect. We want to build daily, weekly, and monthly routines around the activities and goals that matter most to us – and to our kids. This is what it means to live a full, self determined life.
As you and your teen consider how you would like to structure your school year routines and your plans for the future – these posts may help:-
– A Good Day Plan – http://lifeafterieps.com/a-good-day/
– Taking Time to Grow What Matters –
May this be the start of the best school year ever for you and your teen!

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!

 

 

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