How Much Would You Pay to Cure Your Kid’s Learning Disability?

The Brain Balance franchise is selling a 12-week package to tackle ADHD, autism, and other conditions, and parents are buying it.

Robert Melillo, at 57, has an impressive head of mostly dark hair, a prodigious nose, a sleeve tattoo, and natural salesmanship. A chiropractor who specializes in an esoteric branch of the discipline called functional neurology, he treats patients with neurological and autoimmune disorders at his busy practice in New York City. Along with other conditions, Melillo believes he’s developed a cure for attention deficit hyperactivity disorder and autism—although he wouldn’t use the word “cure.” Where establishment doctors see chronic disability, Melillo sees an imbalance in the brain, a lag in development and connectivity on one side or the other that can be, in his preferred term, “resolved.”

Melillo is the founder and guru behind the steadily expanding chain Brain Balance Achievement Centers, which allows him to share his ideas far beyond his Manhattan office. Through the centers, peppered across the country, he promises to help children who have recognized conditions such as ADHD and autism spectrum disorder, as well as harder-to-pin-down varieties of academic and social struggles, with a series of exercises he’s developed. A 12-week program of 36 hourlong sessions costs between $5,544 and $6,444, depending on the center, or from $154 to $179 per session.

There are no arm’s-length, peer-reviewed studies showing that ADHD, autism, or even mild learning disorders can be fixed in a matter of weeks or months, following any method, but this doesn’t stop the parents signing up their children and raising money on gofundme.com pages with headlines such as “Brain Balance or BUST!!!” Melillo’s appeal is palpable on Twitter, where his 72,000 followers find inspiration in quotes like “Raise your expectations for your kids, and they will surprise you” and at the centers, of which there are 110 across the country, with another 20 in the process of setting up. The chain’s total revenue increased 28 percent in 2016 over the previous year to $41 million, and preliminary figures for 2017 show growth of more than 20 percent.

A visit from Melillo, if his schedule permits, is included with the $5,000 grand opening fee paid by the franchisee.
Photographer: Ilana Panich-Linsman for Bloomberg Businessweek
“The fact that we’re growing, what does that mean? It means that we get results,” Melillo says, and I could imagine him shaking his fist at the outmoded, inadequate systems that would dismiss him as a quack.

There’s really only one certainty in the plague of learning and behavior disorders afflicting the modern American child: The “struggling kids” market is vast, and therefore so is the pool of desperate parents. Almost 9 percent of children age 3 to 17 currently have ADHD or ADD, and another 2.5 percent have autism or show some symptoms of it, according to 2016 data from the National Survey of Children’s Health conducted by the U.S. Census Bureau. The same survey also reveals that only about 40 percent of parents believe their children are thriving in all three of the following: learning new concepts, staying calm in the face of a challenge, and finishing things they start.

Medication is the most frequent answer. Some 8.2 percent of children 3 to 17 are taking medication for ADHD, autism spectrum disorder, or difficulties with emotions, concentration, or behavior. Although some experts say these numbers could reflect improved diagnosis and treatment, others voice concerns about Big Pharma pushing drugs on children, faulty or slippery diagnoses, and the pathologizing of what were once normal variations in ability and personality.

For worried parents, exhausted by doctor’s visits and specialist consultations, tangles with insurance companies, and friction with schools, it all leads to internet rabbit-holing, which will bring them quickly to the Brain Balance website, filled with reassuring images and messages. A father draws his son into a hug, and a happy family smiles with their arms around each other, while testimonials float by:

“He’s done something everybody said he couldn’t do.” —Dan G., Brain Balance Parent
“Brain Balance is the answer we’ve been looking for.” —Tammy B.

Tammy B. is Tammy Bingham, who’s not just a satisfied client; she also owns several centers. She first encountered Melillo’s paradigm in 2011 while trying to help her two sons. Her younger boy, Wyatt, was diagnosed with autism at 2, and his older brother, Brody, had trouble processing sensory input and staying focused. Diet changes and nutritional supplements, private school and home schooling, applied behavioral analysis, even a $15,000 portable hyperbaric oxygen chamber to deliver pure oxygen as a healing therapy—she’d experimented with it all, she thought, and spent at least $280,000 on treatments and consultations. She told her husband she expected their older son to live with them forever.

“The future was not bright,” she says.

Then she read Melillo’s book, Disconnected Kids: The Groundbreaking Brain Balance Program for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders. His descriptions clicked with Bingham’s observations—for instance, that her younger son could read and spell, yet didn’t speak and wasn’t potty trained. The book suggests a regimen of exercises—some simple, like balancing on one leg with eyes closed, or crunch-like “curl-ups”—which she got the boys doing. She decided she wanted them to try the in-center program, which would mean decamping from their small town in Nevada. Her husband was skeptical.

Sarah McDowell, the executive director and owner of the Brain Balance center in Lubbock, Texas, speaks to a group at its grand opening. A licensed counselor, she opened a center after learning about Melillo online. She said a subset of children she sees weren’t improving with traditional methods. “I felt so strongly that the kids of Lubbock need this, the parents are at the end of their ropes.”
Photographer: Ilana Panich-Linsman for Bloomberg Businessweek
“He was like, ‘If this is so great, why isn’t it everywhere?’ ” she says. “We did a lot of research, and what we found was that parents who had been through it gave it rave reviews.” In March 2011, Bingham moved temporarily with the kids to Atlanta, where the Peachtree City center, the longest-­running franchise in the chain, had a one-on-one option for her younger son.

An after-school session at any Brain Balance center follows a similar routine, split into cognitive exercises—basic ­computer-based reading comprehension and math—and sensory motor training. Rooms are equipped with low beams, exercise balls, and mats. Coaches, usually young people interested in children (no degrees in child development are required), equip kids as necessary with earphones or mirrored glasses for exercises such as keeping time to rhythms as light patterns flash, which, Melillo says, stimulates the mind’s ability to process visual information.

“When you’re desperate, you don’t want to hear that. You want to believe there’s a 12-week program that will rewire your kid”

Bingham saw dramatic results. By April, Wyatt, 6 at the time, could use the bathroom on his own, was eating with a spoon, and was verbalizing more. Brody, who turned 8 during the program, could finally sit still and listen. (He now attends public school and gets A’s and B’s, Bingham reports.) When she saw how much her sons were changing, she says, “it was kind of like a spiritual moment, ‘This is it.’ I can’t talk about it without crying.”

She flew to New York at the end of that April to meet Melillo and become a Brain Balance owner, paying $45,000 for the first franchise and $10,000 each for three additional ones (a discount that’s no longer available) in Utah. After a year, her first, in St. George, netted $100,000; the second, in South Jordan, near Salt Lake City, is the busiest and most profitable, with about 120 kids enrolled and revenue of more than $1 million in each of the last two years. She’s expanding into Arizona, with a center in Mesa, and has plans for three more

Natalie Hanson, another former Brain Balance client, has a different kind of testimonial, one that’s definitely not quoted on the Brain Balance website. If you search “Does Brain Balance work?” you’ll get to a blog post Hanson wrote in May 2013 about her experience. She got so many queries from other parents after she posted it—mainly “Is it worth it?”—that she added a follow-up in April with an unequivocal “no.”

She stumbled on Brain Balance at a gluten-free expo where the Vernon Hills, Ill., center had a table with brochures. Her older son is on the autism spectrum, and she’d already seen positive changes from a gluten- and dairy-free diet. She found the assessment of her son at the center, and Melillo’s book, enlightening. She also had misgivings: $5,000 for 12 weeks for an after-school program, and the discovery that Melillo isn’t a medical doctor. But, citing Thomas Kuhn’s The Structure of Scientific Revolutions, which she’d read in graduate school, she decided, “So,  he’s a chiropractor. Whatever. If the program works, who cares?”

Her son completed two 12-week sessions. She noticed that he became more attuned to smells during the program and played less with imaginary characters, but otherwise, nothing. Down $10,000, she went back to the drawing board and tried medication. She now says that the dietary part of the program, which she’d already done on her own, may be what yields results. With the diet changes and medication, her son, at 11, has friends and is getting into sports. She accepts that he’ll always be autistic. “When you’re desperate, you don’t want to hear that. You want to believe there’s a 12-week program that will rewire your kid,” she says in a phone call. What bothers her most is that “Brain Balance programs are targeted at these middle-class families, for whom this kind of money is a real stretch,” she says. “You have people trying to figure out if they should get a second mortgage to do it. That just makes you feel sick.”

The Brain Balance center in Lubbock at its grand opening on Jan. 24. It took about nine months for McDowell to get permits, financing, and training for the staff.
Photographer: Ilana Panich-Linsman for Bloomberg Businessweek
One current franchisee told me that within an hour of hearing Melillo speak, she’d decided to start a center herself. When I meet him in his cramped office, I find neither a Svengali nor a charlatan, but a down-to-earth guy from Long Island. He grew up there, in Uniondale, and became a chiropractor after one helped him recover from a football injury in college. By the mid-1990s, he had a rehabilitation center near his hometown and began to focus on functional neurology, which takes the humdrum of adjusting backs to expansive levels of ambition: Practitioners purport to alleviate everything from concussions to epilepsy. Then his son, at around 6, began having trouble paying attention in school, and Melillo started researching ADHD. No doctor or psychiatrist could explain exactly what this attention deficit meant, at least to his satisfaction. He threw himself into the study of brain development and came to his unconventional conclusion that ADHD, autism, and dyslexia, which doctors treat as discrete conditions, are aspects of a core problem—brain weaknesses on one side or the other that inhibit the normal communication between them. He labeled this functional disconnection syndrome, or FDS, and, in keeping with his background in rehabilitation, developed a program of exercises to strengthen the weaker areas of the brain, which eventually became the basis for Disconnected Kids.

As he started treating children, he observed that digestive problems and food sensitivities seemed to accompany their conditions, and he recommended they avoid gluten, dairy, and refined sugar as a way to reduce irritability, anxiety, and depression. (He was ahead of the curve in indicting these now familiar beacons of dietary evil.)

In 2006, Melillo says, he got an offer from an investor wanting to buy his intellectual property. He turned it down, but it buoyed his conviction that the best way to help more kids might be through a commercial venture. His nephew, William Fowler, who at the time was working at the investment bank Sandler O’Neill & Partners LP, volunteered to develop a business plan. Fowler eventually settled on a franchise model and quit his Wall Street job to run Brain Balance full time. The Peachtree center opened in 2007. The franchise model protected them from the brewing recession, because each new owner raised the money for the brand’s expansion. By the end of 2012, there were 43 Brain Balance Achievement Centers in operation.

The only outside investment to date comes from Crane Street Capital LLC, a small, California-based private equity company with a do-good ethos that focuses on educational services. Crane Street bought a 55 percent stake for less than $5 million in 2013, impressed by the devotion of eager franchisees such as Bingham. Managing partner Aleem Choudhry declined to provide a more exact figure for the private deal. Choudhry advised Melillo to simplify the Brain Balance diet, after attempting to follow the recommendations himself just to see what it was like. (A $500 blood test yielded a list of 70 foods he was supposed to cut out; he totally cheated.) Now the program has been whittled down to advising parents to avoid processed and packaged foods with additives and chemical dyes, along with, of course, gluten, dairy, and refined sugar. There’s a Brain Balance site for parents to swap strategies and recipes such as ­chocolate-avocado pudding, coconut milk-strawberry ice pops, and spinach-cilantro meatballs.

Crane Street also helped bring on a new CEO, Chip Miller, after Fowler resigned in 2013. Miller, a former executive at Score! Educational Centers and the private Stratford School in the Bay Area, pushes the tutoring aspects of Brain Balance. “It’s pretty basic: Kids come in three times a week, do exercises at home, and they change their nutrition,” Miller says. “We really are in practice far more of an educational model.”

“Getting help is so difficult … it’s robbing these children of their childhood”

There’s a reason for this emphasis. As scientists advance our understanding of the brain’s flexibility, armed with sophisticated scans that capture lobe activity and reveal neural pathways, neuroplasticity has become all the rage for entrepreneurs hoping to profit from what are still little-understood discoveries. Regulators have taken notice. In 2016 the Federal Trade Commission took action over allegedly deceptive marketing by two companies selling “brain training.” Lumos Labs Inc., which markets online games meant to improve specific brain functions, agreed to pay $2 million in fines and refrain from making claims about benefits such as improved school performance in ADHD sufferers, unless substantiated by human clinical testing. LearningRX Franchise Corp., a center-based chain, reached a $200,000 settlement, similarly agreeing to refrain from making claims to improve ADHD, autism, and other conditions, unless supported by reliable scientific evidence. Neither company admitted wrongdoing. Brain training as a business was in the headlines again last year when U.S. Secretary of Education Betsy DeVos disclosed that she’s an investor in one called Neurocore LLC.

Brain Balance now steers clear of the shoals of science, and keeps its promises vague, at least on the website, where the language has shifted subtly from “Life-changing results, for children as well as their families” to “Find out why our parents call Brain Balance ‘Life Changing.’ ” Gone are links on the home page to white papers and research. You have to navigate through several screens to find Melillo’s studies, many done with a longtime collaborator, Gerald Leisman, a chiropractor who agreed to a three-year ban from federal research grants in the 1990s after the Office of Research Integrity found he had misrepresented his credentials.

Melillo, though, can’t quite stick to the script. “Just because something’s not proven, doesn’t mean it doesn’t work,” he says. “If you take vitamins, there are people out there who would say, ‘There’s no proof that vitamins help you in any way.’ But then there’s other people that would say, ‘Well, there is actually a lot of research on it.’ That’s the thing about research.”

Considering that Melillo recently introduced his own brand of supplements called KidGenius, this sounds laughably self-serving. But that is the thing about research. There’s a reason the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders is on its fifth edition and each entry gets reviewed with Talmudic intensity. Research results are slippery, and the disorders themselves are slippery, typified by something called PDD-NOS, for “pervasive development disorder not otherwise specified.” (Brain Balance claims to treat it.)

The data that’s available on these childhood disorders only makes things fuzzier. The rate of ADHD and ADD among children in Louisiana was 11.7 percent, but in Nevada only 5.2 percent, for example, according to the 2016 Survey of Children’s Health. Rates by nation are similarly inconsistent, suggesting there’s a lot of commerce and culture influencing diagnoses.

The biggest, longest-running study of ADHD, the Multimodal Treatment of Attention Deficit Hyperactivity Disorder (MTA) Study, was a 14-month clinical trial that tracked children treated with medication alone, intensive behavioral therapy, combined therapy, or treatment chosen by parents in their own community. The results of the trial, published in 1999, put the gold stamp on medication as the best treatment. But as the researchers continued to check in with the study participants over the next 15 years, the picture changed: Some treatment compared with no treatment was better, but the researchers found that both medication and behavioral therapy were palliative—they alleviated some of the symptoms—but that “no clinically significant and enduring intervention exists for this condition, as yet.” As for the effects of long-term use of drugs such as Ritalin, the most significant finding was that it stunted growth.

To the credit of establishment science, there’s an increasing willingness to acknowledge that new approaches are needed, which just might provide the surprise twist in Melillo’s story: validation from the mainstream research community. After hearing the Brain Balance guru speak at MIT a few years ago, two researchers at Harvard-affiliated McLean Hospital in nearby Belmont, Mass., invited him to speak to a group of their colleagues. There he met Martin Teicher, who heads McLean’s Developmental Biopsychiatry Research Program and has spent his career investigating ADHD and the effect of childhood adversity on brain development and behavior. Teicher was so interested in what Melillo had to say that he’s now leading a research study of a medication-free approach based on Brain Balance to treat ADHD, funded by a $100,000 donation from Zac Brown, a country musician in Atlanta and founder of a camp for kids with special needs including autism.

Teicher says he’s encouraged by the progress of his study. A dozen unmedicated children completed a 14-week Brain Balance program, modified to be done at home through ­computer-based videos with exercises such as the starfish (sitting in a chair and alternating between a curled-up fetal position and a spread eagle) and snow angels (lying on the floor and making the motion kids make in fresh snow). All of the subjects improved based on a common measure of ADHD symptoms, with the most symptomatic showing the biggest improvement.

MRI scans on six of the kids showed an increase in activity and connections in a region of the brain associated with top-down emotional control and less activity in regions associated with emotion, a pattern linked to resilience, Teicher says. He’s going to continue with more patients and test the hypothesis that the left and right sides of the brain are becoming more balanced.

Kylee, with Melillo, demonstrates another exercise in her program.
Photographer: Ilana Panich-Linsman for Bloomberg Businessweek
Other specialists remain benignly unconvinced, including Matthew Cruger, senior director of the Learning and Development Center at the Child Mind Institute in New York, which hews to a traditional mix of medication, behavioral therapy, and coaching for children and parents. Cruger agreed to a general interview and spent some time looking at the Brain Balance website. He was sanguine about the broad outlines, such as maintaining a good sleep schedule and eating right, principles that help all children function better. He’s doubtful, though, that the exercises themselves are changing the brain and offered a simpler explanation: “If you’re a kid and your parents are saying, ‘We’re going to dedicate a lot of time to making sure that you do this activity that is kind of fun,’ ” he says, “that probably pays dividends.”

Families often come to Brain Balance from a “before” they describe as a stressful nightmare, coping with a child who isn’t fitting into the expected roles and is frustrated, angry, depressed, or self-hating. They recall a whirlpool of negative focus that sucked in the whole family pretty quickly.

“Everyone always says when you’re having psychological problems, get help,” says Sharon Eaves, whose son Scotty did Brain Balance in Allendale, N.J. “But getting help is so difficult, having to wait months and months to see the right doctor, having to wait months for your child to develop a good relationship with a therapist—it’s robbing these children of their childhood.”

She says the goal of a lot of the interventions seems to be to medicate children so they’ll sit still in school; she’d rather Scotty do push-ups. It makes sense that it might be a vast relief to everyone to have an endless problem turn into a fun workout with an end in sight, even if any number of things—a misdiagnosis, a developmental shift, the placebo effect—could explain an easing of symptoms. Were Brain Balance not $150-plus an hour, why, how, or if is almost beside the point. Melillo’s infectious confidence that there’s a “resolution” to the psychosocial problems troubling contemporary children, a certainty backed by a lot of scientific theorizing, is what he’s packaged and what parents are willing to buy. As Eaves says, “You get really defeated that there’s never going to be a solution. What I like about Brain Balance is it puts it in a very nice package and gives you an action plan.”

Source: https://www.bloomberg.com/news/features/2018-02-05/how-much-would-you-pay-to-cure-your-kid-s-learning-disability

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