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!
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 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.
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!