In today’s health care ecosystem, the availability and quality of a field of services are dependent on insurance coverage. In the world of autism services, the tableau of insurance coverage is decidedly mixed.
Children with autism spectrum disorders are generally covered by health insurance for services they require, but not universally. All but two states require private health insurance to cover autism services. Other states may require limited coverage under mental health provisions. Federal employee health benefit plans cover ABA with prior approval and certain restrictions.
ABA is a critical piece
Because early intervention ABA programs are critical to successful treatment, this might sound like good news, and it generally is. Insurance coverage provides access to treatment for many families who could not otherwise afford it.
But it is a qualified success.
There are two major issues with insurance coverage for autism services. One is the amount or intensity of services funded. The other is quality.
As a group of genetic neurodevelopmental disorders, autism is not something to be “cured.” Treatment is optimal when it is intensive and sustained over many years. The best treatments available for those on the autism spectrum are rooted in the science of applied behavior analysis (ABA), a mostly one-on-one treatment approach based on understanding behaviors and how they are affected by the environment. ABA therapy is costly—though foregoing ABA therapy is far more expensive in the long run.
On average, ABA therapy costs $17,000 annually for a child on the autism spectrum, according to the Centers for Disease Control. For many individuals, this number is closer to $45,000-$100,000 annually. Many states mandate private insurance cover up to $36,000, with some as much as $50,000 annually. But others don’t.
The impact of insurers
Even when coverage is mandated, that may not be a panacea. One private insurer, with whom I have had numerous frustrating conversations, reimburses at rates no provider can accommodate without significantly reducing quality and hiring interventionists who are not well-trained. The rates are fabricated on minimum wage pay as a baseline, precluding the necessary growth of clinical skills in technicians and advanced educational training, not to mention any ability to invest in recruitment and retention of talent. At this wage level, service providers are competing with companies such as Walmart or Starbucks for skilled ABA behavior technicians whose work with vulnerable children requires many hours of ongoing training and supervision to meet quality standards. This is not an easy job, often requiring many hours of commuting between clients’ homes and management of complex family issues.
What we are left with are employees paid as if they are unskilled and fungible while tasked with building the brains of our precious children, teaching them the skills critical to communicate, learn, and become functioning, independent adults.
Even more important is what health insurance covers. As you are likely aware, lacking a consensus in the industry about outcome measurements, insurance companies are stepping into the breach and dictating their own standards. Because insurance companies are just learning about ABA they generally have limited appreciation for the complexity of maintaining a good ABA therapy program, and this is distorting the provision of care.
Cutting corners and thinking short-term
Let’s look at an example. Many programs require providers to demonstrate short-term outcomes, such as whether a child can respond to their name, often ignoring long-term goals such as developing the skills to care for themselves as an adult. Insurance companies have a short time horizon because they are not likely to provide coverage beyond age 18. Their entire worldview with respect to children with ASD is narrowly focused on childhood. Not surprisingly, recent studies of adults with autism have revealed a distressing lack of personal independence and quality of life.
A recent court case against United Healthcare illustrates the issues our industry has with insurance. A U.S. District Court judge ruled the company adopted coverage guidelines for people with disabilities that focused more on its bottom line than on patient care.
The subject concerns all of us; not just those connected to people with autism. Many people on the autism spectrum have spectacular neurodevelopmental assets in addition to their deficits, and that potential is being wasted. In addition, each child with autism whose treatment fails to prepare them to achieve any kind of self-reliance as an adult will continue costing families and society between $1.4 million and $3.2 million over their lifetime. It is an immense waste of human potential, both financial and otherwise, and we all pay the cost.
Article written for Forbes.com.