President Obama and Autism Hopes

As parents of affected children, we are encouraged by President Obama’s commitment to improve the lives of individuals with autism and increase the government’s response to this virtual epidemic, which now affects an estimated 1 in 150 young people in our country.

Most will remain challenged by the effects of autism spectrum disorders throughout their lives.

There is much to do. While research budgets have increased in recent years, thanks to the admirable efforts of organizations like Autism Speaks and the Autism Society of America as well as key lawmakers and other officials, scientific study of this challenge – or more likely, this set of related but distinct and complex challenges – remains relatively underfunded. Worse yet, perhaps just 10 percent of affected children receive the kind of intense and effective treatments that can move them toward recovery and greatly improve their overall quality of life.

The ideal solution is legislation mandating that medical insurance plans cover autism therapy costs without delay, such as that already enacted in eight states and now being considered in Maryland (though similar efforts in Virginia appear to have just been stymied).

But in the interim, President Obama can take at least two immediate steps – ideally in his first 100 days – to improve the well-being of a significant portion of the affected population and set a standard that the broader insurance market might then be cajoled and pressured to emulate. First, he can mandate that the Defense Department’s TRICARE health plan revise its current policy and more fully cover the costs of necessary treatments for military children. Second, he can direct the Office of Personnel Management to require that health insurers for federal civilian employees provide a similar level of reimbursement.

Today, most medical insurers refuse to cover the costs of autism treatments. They invoke the bogus argument that treatment methods are experimental, even when endorsed by organizations like the American Academy of Pediatrics.

Careful studies consistently show that one-third to half of children receiving intensive, early treatment can be mainstreamed in school. Many can later then hold jobs and maintain interpersonal relationships. Or insurers leave it to schools to address the challenge, claiming treatment methods are educational rather than medical.

They do so though early intervention should start well before the school-age years, and though the methods of treating autism resemble the kinds of rehabilitative care used to help brain-injured patients – methods widely recognized to be medical in nature.

This is fundamentally unfair. As a nation we provide generous health-care coverage for most classic medical conditions. For example, Medicare has just decided to expand coverage for many experimental cancer drugs for older individuals. This is the right kind of compassion for a wealthy and humane society to adopt. But if we can do it for sick, elderly cancer patients, why not for young and promising individuals with autism – who have their whole lives before them? While autism therapies are also imperfect, and also evolving, they are at least as effective as many of these kinds of new cancer drugs.

Like effective treatments for cancer, early intensive intervention can be described as expensive. But we need to keep costs and benefits in mind. Any individual who benefits from this intervention and is able to function independently in a typical classroom rather than in special education could recoup the costs to society before even leaving school. An individual who winds up able to hold a job rather than spend a lifetime on unemployment and Medicaid saves the state at least a million dollars.

And for those most seriously afflicted, if early intervention helps them live at home or in a group home rather than in an institutional setting, lifetime savings can reach well into the several million dollar range.

The specific steps we recommend for President Obama are within his purview and hardly radical to contemplate. TRICARE already provides dependents of active-duty service members up to $30,000 a year in reimbursement for autism therapy, particularly for the category of interventions known as behavioral intervention since these have received the most study. As such it has correctly accepted the principle of helping families, but the dollar limit on reimbursement provides less than half of what many must spend. Since these are military families with generally modest incomes, remaining out-of-pocket costs can easily represent half or more of disposable income, necessitating families to take out second mortgages or otherwise go deeply into debt even as a parent may be deploying overseas to a combat theater.

The best approach would be to treat autism therapy as a basic medical treatment under TRICARE’s reimbursement concept, rather than a supplemental benefit managed under the ECHO program that creates barriers and limits on care. A second-best approach would be raise the dollar limit to at least $60,000 a year, expand coverage to all TRICARE beneficiaries, and then index it for inflation and the cost of living.

As for civilian federal employees, the OPM has the power to set the parameters of health plans offered these individuals. And there is nothing radical about our proposal that such plans cover autism therapy, again at least in the range of $60,000 a year. Eight states already have legislation mandating that private health plans in their states cover mainstream autism therapy treatment programs. Dozens more states have bills pending on the same.

And while the cost implications of such a mandate would be nontrivial, by our estimates they would reflect about one-quarter of 1 percent of current health-care costs on a per capita basis.

Having set these examples, President Obama would then have encouraged and empowered activists and state legislators and other key parties to push onward themselves to create a national system in which some of our most vulnerable – facing severe yet largely remediable problems – get the kind of help our nation has denied them far too long.