Autism Spectrum Disorder is more common than childhood cancer, cystic fibrosis, and multiple sclerosis combined. In the US, autism affects 1 out of every 68 children, while in North Carolina, that number is 1 in 58. Although it has no cure, there are treatments and the best current treatment available, Applied Behavior Analysis (ABA) therapy, is unavailable to the majority of citizens of North Carolina due to the acts of Blue Cross and Blue Shield of North Carolina along with two Senators, Tom Apodaca and Phil Berger.
The cost of Early Intervention is much less than cost of leaving autism untreated.
A Harvard study found that the cost of lifetime care for an autistic person is about $3.2 million, although the author, Michael Ganz, believes that the true cost is even higher because some variables are hard to measure. The American Academy of Pediatrics found that children with special health care needs with autism spectrum disorder were more likely to
- live in families that report financial problems
- need additional income for the child’s medical care
- reduce or stop work because of the child’s condition
- spend ≥10 hours per week providing or coordinating care
- paid more than $1000 in the previous year for the child’s care.
Although most people consider autism untreatable, many new studies show that “early behavioral intervention is associated with normalized brain activity in children with autism”. These studies have shown that children receiving intensive, specialized therapy before 3 are more likely to have higher IQs, better speech, and to function more similarly to their elementary school peers.
In a 1998 cost-benefit estimate [PDF] for early intensive behavioral intervention, the authors conclude that the savings of 3 years of EI between 2 and school entry can save an estimated $187,000 to $203,000 per child ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years with an initial cost of $33,000 to $50,000 per year. Diagnosis age has slipped even lower since 1998, with the MCHAT and other measures allowing for children as young as 14 months to be diagnosed. As knowledge improves, it is reasonable to assume that the savings rate is even higher now.
Early Intervention typically consists of Speech Therapy, Occupational Therapy, Physical Therapy, and ABA Therapy, for those parents who can afford it.
ABA standards for Applied Behavior Analysis and is currently considered the “best research supported and most effective treatment for the main characteristics of autism”. The American Academy of Pediatrics released a report that said, “the effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.”
The only alternative to ABA offered by the state of North Carolina is Play Therapy and, since $18 million was cut from the NC Infant-Toddler program, many parents are unable to get even a half hour of Play Therapy a week.
In a public statement in response to criticism over their autism coverage, Blue Cross and Blue Shield of North Carolina said that they cover the diagnosis and treatment of autism because they cover:
-doctor visits for primary care and specialty providers for the diagnosis and on-going treatment of autism without any limitations on the number of visits
-pharmaceuticals that are used to treat symptoms associated with autism
While Speech Therapy, Occupational Therapy, and Physical Therapy can help, their scope and practice is quite limited compared to ABA. My son was enrolled in Occupational Therapy at 11 months and Speech Therapy at 15 months. Despite our early efforts and the amount of visits we were able to get covered (more than many), when he was diagnosed with autism in April of this year, he showed no understanding of words or of many basic human interactions including pointing. On Nov 4th, he’ll be 2, and in that time, the change in his behavior and abilities could be said to be miraculous, it is so dramatic. He went from having severe speech delays in both categories to having a healthy receptive vocabulary (how much he understands) and an expressive vocabulary (how much he can speak) in the normal range. He points, seeks out my attention when he plays games, engages in imagination play, and kisses me and his stuffed animals. He’s still very much autistic (and probably will always be), but because of ABA, it is highly likely that he will be able to share a classroom with his neurotypical twin brother. Without early treatment, it is far more likely that children on the spectrum will end up permanently disabled and relying on Medicaid and Social Security in order to survive.
What’s more, without insurance covering ABA therapy, parents who can afford to spend tens of thousands out of pocket are more likely to use companies that charge less. ABA therapy, when done incorrectly, can be abusive, and North Carolina currently allows individuals without any education background to call themselves ABA therapists after receiving only 12 hours of training. Without proper therapy for their children, some parents turn to dangerous forms of ‘treatment’, such as bleach therapy (you can read the horrific details here).
Blue Cross and Blue Shield argues that ABA therapy is an educational intervention, not a medical one, and they would have children with autism rely on our underfunded school system [PDF] in order to receive treatment. Even if we ignore all the studies that say that school age is way too late to begin treatment for autism, requiring the therapy to come through the schools costs tax payers considerably. During the 1999-2000 school year, the United States spent $77.3 billion on support services and regular education for disabled students.
Lorri Unumb, an advocate for ABA therapy, has compiled data from the 37 states that include ABA in autism coverage and found that “the treatment ends up costing insurance premium payers about 30 cents per member, per month to pay for coverage for everyone“. Autism Speaks President Liz Feld wrote an open letter to Blue Cross Blue Shield of North Carolina asking them to please reconsider their policies. They remain steadfast. A Blue Cross and Blue Shield lobbyist told Rep. Jim Fulghum, “Just say no” in regards to the bill. “Just say no” to giving autistic children therapy. State Employees and Teachers are now covered, so why deny it to other parents?
Bills that require insurance companies cover ABA treatment have passed the House two years in a row. Despite the support of 82% of North Carolina voters and the Representatives, the bills die in committees chaired by Tom Apodaca. You can look at the progress of the bill during the 2014 season here. Phil Berger, who has the power to bring the bill to the Senate, has not done so. Since we know that Early Intervention can benefit children with autism and save the tax payers so much money, why would they refuse to bring this bill to a vote?
Tom Apodaca has received at least $13,000 from Blue Cross Blue Shield, while Phil Berger and his son have taken at least a combined total of $28,000 from 2008 to 2014. From 2000 to 2008, Apodaca took $9,400, while Berger got $10,700. When I asked about the latest bill in a Facebook groups for autism in North Carolina, I was told that Apodaca is actively working against families with autism. They described how he ignored all calls, emails, and letters. Anyone who tries to make a personal plea was kicked out of his office. When asked why he refuses to pass autism insurance reform, Apodaca claims that “Until we get guidance under the Affordable Care Act, we’re kind of tied,” yet, this is false since several other states have passed autism insurance reform without a hitch. In 2015, Washington, Oregon, Nebraska, and Maryland began coverage, while Kansas and Maine expanded coverage.
The problem is not limited to the two of them. An analysis by Democracy North California found that:
no other company the size of Blue Cross has donated more to state politics through its political action committee –- a total of $643,000 from the 2000 election cycle through 2008.
Apparently, Blue Cross Blue Shield has bought the politicians of North Carolina leaving thousands of autistic children without the therapies they need at the expense of the taxpayers.