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!
The information in this post comes to you courtesy of Jackie Martin of Vocational Steps. She’s always on the lookout for ways to provide atypical young people with job training and opportunities, and had sent me a list of several programs already in place around the US.
As Jackie told me in an email, “…the different programs/companies [in the list] actually came from different people who would email and say, ‘I found this link and it sounds interesting’ and then I researched each one to get their information. I wanted to be able to show people here in CA that there are programs for our young people – we don’t need to reinvent the wheel, we just need to duplicate it! …[T]he more people know about successful employment models, the quicker we can start duplicating them in our own cities and be able to have more of our young people employed.”
Jackie is now “working with a new company called ‘CoNNect’ (connectproductsandpeople.com). It is based in Murrieta CA with the main warehouse there, a small one in Colton and now one in Corona. The oversimplified description is that the CEO–Jonathon Mills–wants to help people with disabilities (and veterans) get some work experience and then help them find a job out in the community.” The jobs have included things like office work and sorting recycled plastics, with more possibilities on the horizon.
What follows is the list of particular programs in California, Indiana, Massachusetts, and North Carolina. If you live near one of them, you might want to check it out. For the rest of us, learning about these programs may help us figure out what can be done in our own communities.
EXCEPTIONAL MINDS – Sherman Oaks, CA
A non-profit vocational center, animation and working studio for young adults on the Autism Spectrum.
- Accredited certificate from Adobe Flash Systems (Programs taught: Flash, Photoshop, Dream Weaver or Mocha Pro)
- 3 year Program (10 months per year, 5 days per week)
- Vocational center and working studio
- Visually-gifted ASD individuals
- Graphic Arts
- Web Design
- Visual Effects
- Full-Time Program: 3 yrs., 5 days per week, 10 months per year
- Private Lessons: To prepare individuals for the Accredited Program
- Summer Workshops: 6 weeks, 3 sessions available:
- Video Game Creation
- Movie Magic-Visual Effects
Exceptional Minds – 13400 Riverside Drive, Suite 211, Sherman Oaks, CA 91423
EXTRAORDINARY VENTURES – Chapel Hill, NC
Non-profit organization that creates and nurtures self-sustaining small businesses designed around the skills of the young adults with autism and developmental disabilities that serve as its workforce. They currently employ 40 people. Some work 2 hours per, 2 days per week and others work 30—40 hours per week. “EV” operates six (6) ‘ventures’:
- A full laundry service (laundry and dry cleaning)
- Office services (collating, stapling, stuffing envelopes, etc.)
- Candles and gifts, sold in their gift shop (they make their own candles and scents)
- Cleaning and maintenance service for city buses
- An event center that rents space for meetings and conferences, and they staff the event
- Parking at football games for the University of North Carolina
Extraordinary Ventures – 200 South Elliot Road, Chapel Hill, NC 27514
PATHFINDER REGIONAL VOCATIONAL—TECHNICAL HIGH SCHOOL – Palmer, MA
Vocationally-based, hands-on high school offering academics and vocational training to students who qualify.
- Serves students in grades 9-12 who, if they qualify, attend from nine surrounding cities
- Information night for potential candidates is offered to 5th—8th graders at their respective schools
- Offer 14 “shops”:
- Collision Repair
- Automotive Technician
- Health Assisting
- Food Management
- Business Technology
- Programming & Web Design
- HVAC-R (Heat, Vent, A/C & Refr)
- CAD (Computer-Aided Drafting)
- Each “shop” is a total hands-on learning experience (e.g. Students build a house every year)
- Co-op program: Second semester of junior and senior years, students alternate working at a business for one week and studying at school the next week. They are paid by the employer.
- Very strict selection criteria
- They provide for students with special needs and have had Life Skills students in their program
Pathfinder Regional Vocational Technical High School – 240 Sykes Street Palmer, MA 01069
MINDSPARK – Santa Monica, CA
Socially Responsible Outsourcing
Many U.S. companies outsource their software testing to offshore companies in India or China, which has many drawbacks due to the time zone and cultural differences. This leads to communication inefficiencies that may increase the effective cost of these services. The software industry is already entrenched in a model where the software testing services are not performed at the customer’s location. In effect, MindSpark will also be an outsourced IT company, but instead of customers outsourcing to companies in India or China, they can outsource to a socially conscious company in America offering high quality services at competitive rates. Any company that chooses to outsource their software testing work to MindSpark can feel satisfaction that they are employing people in America and providing opportunities for individuals with specialized abilities to be gainfully employed.
Core Commitment to Social Purpose
Consistent with its socially responsible mission, MindSpark Inc. was incorporated as a benefit corporation in the state of California in May 2013. A benefit corporation, legal in California since January 1, 2012, allows entrepreneurs and investors to organize corporations that can pursue economic and social objectives simultaneously. The benefit corporation has a core commitment to social purpose embedded in its organizational structure, with an additional commitment to full transparency and accurate assessment and reporting of its social, environmental, and financial performance and impact.
The MindSpark Training Academy (MTA) was incorporated as a non-profit organization in June 2013. In late 2014, MTA will attain 501(c)(3) status and will become eligible for funding from foundations that support organizations with tax-exempt status. A higher level of funding will allow MTA to offer more deserving young adults the opportunity to obtain the training required for employment as software testers.
The principal owners of MindSpark Inc. are working without compensation to launch and manage the enterprise. Growing the business will enable MindSpark to train and hire increasing numbers of qualified and deserving employees. As a vital and socially conscious benefit corporation, MindSpark will provide profits to be distributed to its employees in the future.
MindSpark Training Academy
The MindSpark Training Academy was created to provide vocational training to talented and qualified individuals with specialized abilities, particularly young adults on the autism spectrum. The customized training will enable these individuals to use their interest in technology, keen eye for detail, and sustained focus to earn a living. Attention to detail and sustained focus are highly valued in the field of software testing, which can be enjoyable for people with an aptitude for finding patterns and irregularities, and highly satisfying when problems are identified in the software that is being tested.
Candidates who are interested in the training program will be asked to fill out an application form and an assessment checklist prior to being invited for an interview and further assessment. Only those candidates with a high likelihood of completing the program will be accepted for training.
The MindSpark Training Academy plans to offer four 11-week training sessions per year, and may also offer accelerated 6-week training sessions. Training is offered free of charge. After completing a training session, qualified trainees will be offered a 3-month paid apprenticeship with MindSpark Inc., which subsequently leads to employment as a paid software testing analyst. In collaboration with Square One and MindSpark, we have a team of trainers and experienced test leads who will provide a supportive, safe and respectful environment.
Our MTA Manager of Training and Development, Judy Metz, has a doctorate in Psychology, a Master’s degree in Educational Psychology, and twenty years of experience developing and implementing software solutions. Our trainees will have an understanding teacher with real-world experience to guide them towards their new careers.
Interview and Assessment
11-Week Classroom Training with Certificate of Completion
3-Month Paid Apprenticeship
MindSpark – 2525 Main Street Ste. 214, Santa Monica, CA 90405
GREEN BRIDGE GROWERS – South Bend, IN
What We Do
We provide skill-matched employment to underserved young adults on the autism spectrum using an innovative highly-productive agricultural method, aquaponics.
Skill-Matched Employment for the Autism Spectrum
Green Bridge Growers is a venture with a strong social mission, and sustainable practices are at our core. With 90% of adults with autism experiencing unemployment, Green Bridges leverages new jobs for those with autism in our community – using aquaponics to grow vegetables productively throughout the year.
The Other 90% Problem
Unbelievably, 90% of the food we eat in Indiana is grown out-of-state, despite the skyrocketing demand for locally grown food. We thought, why not connect this 90% problem with the lack of employment for those on the autism spectrum and develop a solution that also contributes to our local community? Green Bridge Growers was created from this solution-oriented way of thinking.
Our growing practices are the very best. We use organic growing methods and materials, grow year-round, and employ the innovative new farming method, aquaponics, into our system. Within this system, fish and plants grow in harmony, producing faster growing rates and much less waste. Our customers include high-end restaurants and grocery stores, and we’ve begun exploring a future relationship with Notre Dame Food Services.
As part of our professional development goals, we’ll further engage our workforce through leadership training, active participation, and team building, allowing our autistic employees to accumulate integral new skills and competencies.
How We Do It
The innovative aquaponic method of farming that we use in our venture has the unique ability to grow fish and vegetables in tandem. Fish grow in tanks in a closed-loop ecosystem, where fish effluent is filtered and fertilizes the plants we grow. The plants then cleanse the water for the fish. Aquaponics uses 90% less water than conventional farming, and has the additional benefit of reducing time to harvest by one-third. Plant growth is greatly accelerated by aquaponics!
When we learned of aquaponics several years ago, we began attending intensive training sessions to learn hands-on practical skills and concepts. Aquaponics is such a phenomenal outlet for our own interests and skill sets, but it also is an outstanding match for the skills of those with autism. We’ve learned from the best in the field, and maintain membership to the US Aquaponics Association.
We manage other installations, such as the Century Center Skywalk in Sound Bend, that feature year-round growing using soil enriched by organic materials like worm castings and coconut coir. Incorporating great organic nutrients into our soil and our aquaponic system helps us raise plants that are productive, healthy, and of the highest taste and quality for our customers. We take tremendous pride in providing jobs for the underserved of our community, while keeping our products fresh, organic, and as close to the customers as possible!
Green Bridge Growers
Innovation Park Notre Dame – 1400 E. Angela Blvd. #148, South Bend, IN 46617