How Health Insurance Companies Fail Autistic Children
If they won't pay, the federal government must step in.
Ivy League graduates don’t typically trash years of expensive cultivation at private schools and on the ski slopes of Aspen by off-ing a guy in midtown Manhattan. Not unless they have a major break from sanity. Pain, hallucinogens, and the terrible anomie impacting all young men today created a toxic stew in Luigi Mangione’s brain, which led to tragedy for a middle-aged executive and this young man who is looking at life behind bars.
All that is true. It is possible to hold another truth: Health insurance companies ration services and make people’s lives miserable. This week, ProPublica published an exposé of UnitedHealth — the company at the crosshairs of Luigi’s rage — which has been denying payments for ABA for autistic children. This problem is widespread despite state legislation that mandates coverage for autism.
Millions of parents, some in very desperate straights, must spend weeks in a phone tree hell begging in vain to get coverage for basic therapy for their autistic children. Billion-dollar insurance industries deny therapy for autistic children — it’s hard to think of worse villains. Financial support for autism — both at schools and therapists’ offices — must come from the federal government. The needs are too great.
Increase in Numbers, Increase in Need
Providing services for the rapidly expanding number of children with autism is a challenge. The CDC estimates that the autism rate among children is now 1 in 36 in the United States, or about two million children. Nearly a million children between the ages of 3 and 21 have a significant level of autism, which necessitates an individualized education in public education.
Autism is complicated. One child might need half a dozen different types of extra help — behavioral therapy, social skills training, speech therapy, occupational therapy, academic tutoring, and physical therapy. Who pays for all that extra help? Schools or insurance companies? It’s a grey area. Too often, parents have to pay for that extra help and forgo an entire salary to manage this situation.
One form of therapy, Applied Behavioral Analysis (ABA), is very time-intensive and expensive. According to one estimate, the annual cost of ABA therapy costs between $57,000 and $230,000. This form of therapy, while controversial in some circles, is considered the gold standard by most doctors. Yet, even the doctors who aren’t thrilled with ABA are likely to propose an equally expensive program because autistic children need intense help to move forward.
To avoid those costs, health insurance companies are denying claims for ABA services, as explained in ProPublica. And children are suffering. The young man in the ProPublica piece gained a few words and a lot of self-esteem through ABA services. Regression is inevitable when that help goes away.
I also know that insurance companies won’t cover ABA therapy unless the patient has an official autism diagnosis from a doctor. The trouble is that there is a three-year waitlist to get a medical diagnosis, so a toddler might have to wait an entire three years before getting any help for their autism. I’m going to be working with a team to help solve that problem in the New York/ New Jersey area.
Solutions
As a parent of an autistic young man, I lived it. I’ve spent countless hours on the phone with insurance companies. Sometimes, we’ve gotten services covered, other times not. I’ve filled out the appeal forms. I’ve waited on hold and walked away in tears. Some therapies didn’t happen because we couldn’t afford the costs on our own.
These days, Steve is in charge of insurance claims for therapy and social skills classes. Yes, all that still happens now that Ian is an adult. After filling out multiple out-of-network forms every month, we get coverage for about 75 percent of his bills, which we consider a success.
Over time, it’s impossible to quantify the financial impact of autism on our family. In addition to filling in the gaps in health insurance coverage, we had to supplement his mediocre schools with tutoring. I quit working a full-time job to drive him around to all this extra help, deal with a substandard school system, and provide substitute companionship when our community failed us. Over twenty years, the impact of autism on our family must be in the millions.
Every young person today has a brother, cousin, or neighbor with autism. Do you think they will be eager to become parents themselves after witnessing those struggles?
Financial support for autism — both at schools and therapists’ offices — must come from the federal government. The needs are too great. Public schools and health insurance companies are not interested in doing this job. Families cannot do it on their own. This is a crisis, just the same as a hurricane that wipes out a community. We need FEMA to step in to support autistic children, families, and communities in crisis.
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I’m a single mom grappling with how to find the time and financial resources to support my son, who was unofficially dx as having ASD at age 16 through the public school system. He was tested with a basic test administered in many public schools. I cannot afford the more sophisticated and specific dx offered by Vanderbilt University in our home city. He turns 18 in February 25. Socially, he’s been suffering to the point I’d say he’s in crisis. His emotional support counselor is self-pay only—completely out of pocket. There are few therapist who specialize in teen males with ASD.
Add to that, my son’s bio father, who I now recognize as highly autistic himself, does not believe ASD is real and will not pay for any form of therapy for our son.
My son’s Dad believes ASD was created to help state/municipal public schools systems draw down more federal dollars.
The dent in my forehead from banging it on the table gets progressively deeper.
Rest assured I have my own counselor to try to cope, but she too is self-pay only and I can only afford the out-of-pocket costs once every five weeks.
My budget is balanced on a razor’s edge.
Yes, we did manage to put away college savings for him in a 529 plan, but my child insists he’s not going to college because he’s sick of the whole system.
Good times.
I’m a single mom grappling with how to find the time and financial resources to support my son, who was unofficially dx as having ASD at age 16 through the public school system. He was tested with a basic test administered in many public schools. I cannot afford the more sophisticated and specific dx offered by Vanderbilt University in our home city. He turns 18 this coming February 5. Socially, he’s been suffering to the point I’d say he’s in crisis. His emotional support counselor is self-pay only—completely out of pocket. There are few therapist who specialize in teen males with ASD.
Add to that, my son’s bio father, who I now recognize as highly autistic himself, does not believe ASD is real and will not pay for any form of therapy for our son.
My son’s Dad believes ASD was created to help state/municipal public schools systems draw down more federal dollars.
The dent in my forehead from banging it on the table gets progressively deeper.
Rest assured I have my own counselor to try to cope, but she too is self-pay only and I can only afford the out-of-pocket costs once every five weeks.
My budget is balanced on a razor’s edge.
Yes, we did manage to put away college savings for him in a 529 plan, but my child insists he’s not going to college because he’s sick of the whole system.
Good times.