Autism and Your Vote

Here in the United States we'll be voting for president soon. (Well, in six months.) For myself and many others, the candidates' stances on autism is of particular interest. With the CDC reporting that 1 in 88 children born in the US has autism, this is an issue that should matter to everyone, even if you don't have a loved one with autism nor have autism yourself. Without attempting to pass opinion, I wanted to talk about the candidates' positions on the subject.

My main concern about Mitt Romney with regards to autism is that there doesn't seem to be a whole lot known about his stance. The biggest indicator is a YouTube video in which a 9-year-old boy with autism asked Romney what he would do to help autistic kids if he were elected. His response, summarized:

• He would support funding scientific research that results in health benefits to the American public.
• His remarks only addressed searching for a cure for autism and other disorders, and made no mention of anything he would do in other respects to support those who currently have it.
• He indicated that while he supports funding these research programs, that support is contingent on being able to pay for them. He would not be willing to increase our debt to foreign powers to do so, but he would slash budgets for other programs.

As for the incumbent, we have the advantage of seeing what he has actually done in comparison to what he promised. Actions speak louder than words and all that. The Tampa Bay Times maintains PolitiFact, a site devoted to not only fact-checking candidates' claims during speeches and debates, but also tracking whether or not a candidate keeps their campaign promises after they're elected. Below is the list of Obama's campaign promises related to autism that I was able to find through their site. As with pretty much every elected official ever, some promises were kept, some were broken.

Promises Kept

• Reinstate executive order to hire an additional 100,000 federal employees with disabilities within five years
• Create a best practices list for private businesses in accommodating workers with disabilities
• Launch educational initiative for employers on tax benefits of hiring employees with disabilities

In The Works (some action taken, but promise not fulfilled so far)

• Mandate insurance coverage of autism treatment
• Set a national goal to provide re-screening for all 2-year-olds for developmental disorders
• Fully fund the Combating Autism Act and Federal Autism Research Initiatives

Promises Broken

• Fully fund the Individuals with Disabilities Education Act (IDEA)
• Appoint federal-level coordinator to oversee all federal autism efforts
• Create a National Commission on People with Disabilities, Employment, and Social Security
• Change federal rules so small businesses owned by people with disabilities can get preferential treatment for federal contracts

If you have other information (from credible sources) on the candidates with respect to autism, please send it my way and I'll add them to this post. Whatever you decide, please remember to vote!

Utah House Bill 69

The Utah legislature starts a new session on Monday, and one of the bills to be considered is H.B. 69: Insurance Coverage for Autism Spectrum Disorders. This bill would require insurance companies to provide coverage of up to $50,000 per year for proven, effective therapies for individuals with autism spectrum disorders (ASDs). At this writing, 29 states have such a law currently on the books, 14 (including Utah) are considering an autism coverage reform bill in 2012, and 8 have no such law and are not currently considering one.

Most insurance companies do not provide any coverage at all for therapies or medications used to treat ASDs when not mandated by law. In fact, most won't even cover diagnostics to test for autism, and if even one aspect of a doctor's visit is related to autism, many will refuse to cover the entire visit. (Parents quickly learn to segregate their autism- and non-autism related doctor visits.)

One might ask why insurance companies don't provide coverage for autism. Some point out that autism has no known cure and that few are able to overcome it and live fairly typical lives. This excuse ignores the fact that insurance often provides coverage for other incurable conditions such as schizophrenia, and even for potentially lethal conditions with lower rates of recovery such as cancer and heart disease. (Lethality actually increases the odds that a company will cover a condition, partly because if the patient dies they will no longer be incurring medical costs.) Another assertion is that diagnostic and therapy services are handled by schools. While the school-based programs do work for some kids, they don't work for others, and budget cuts have resulted in many such programs being woefully under-funded and inadequate.

A question we must ask is whether such a law would constitute a net positive influence on society. Insurance companies and some businesses oppose the law, saying that providing this coverage would require an increase in premiums. How much of an increase? The Council of Affordable Health Insurance estimates that an ASD coverage mandate would raise premiums by 1%. Long term, this may increase to about 3% as services expand and if autism rates continue to rise.

What those who oppose ASD coverage mandates often fail to consider is the cost society bears as a result of not treating autism. Those who are not able to overcome autism remain dependent on others for their entire lives. Many families go into massive debt in order to try to pay for autism treatments, leading to increasing defaults on loans, foreclosures, bankruptcies, and welfare costs. A number of autistic adults end up as wards of the state when their parents die or become unable to care for them. The Harvard School of Public Health estimates that the total cost of caring for the average autistic individual is $3.2 million, and that the total annual cost to society is $35 billion. Caring for people with autism is going to cost the American public one way or another, whether through insurance premiums or taxes. From a purely financial standpoint, it makes sense to invest in treatments that have been demonstrated to help individuals overcome autism and become productive members of society, who will then be paying into the system instead of drawing from it their whole lives.

Having a child with autism has more than just a financial cost. It changes a family forever. Parents of children with autism experience greater incidences of fatigue, sleep deprivation, stress, clinical depression, and marital problems. They struggle with grief for the future that their child may never get to have, nagging feelings that there must have been something they could have done to prevent it, hopelessness at the bleak prognosis for most children with autism, and guilt at having to shortchange the child's neurotypical siblings. They also experience massive amounts of judgmental behavior from others, ranging from well-meaning comments or parenting advice given in ignorance of the unique challenges of autism, to dirty looks when a child has a meltdown in public, to confrontational assertions that their child's problems stem from lazy parenting. (Trust me, raising a child with autism is not for laissez-faire parents!)

Please, take the time to contact your Utah legislator and ask them to support S.B. 69 to help Utah's autism community.