Tuesday, February 18, 2014

Letter to Senator Wayne A. Harper about SB 57

February 18, 2014
Senator Wayne A. Harper

Re: SB 57

Dear Senator:

SB 57: Autism Services Amendments was recently given a favorable recommendation by the Senate Business and Labor Committee by a 6 to 1 margin, and is now slated to have its second reading in the senate. I gave testimony in support of that bill to the committee as the father of two children with autism spectrum disorders, and now I am writing to you to encourage you to vote “yes” for this very important piece of legislation.

As you may be aware, Utah has the highest autism rate in the nation (1 in 47 children, as opposed to 1 in 88 nationwide), yet currently Utah is one of only 16 states where insurance companies are not required to provide coverage for proven autism treatments. As a result, families of autistic children, families that have insurance and pay their premiums, must pay for autism therapy out of pocket. In fact, parents are frequently denied coverage for issues not related to autism (such as a broken arm) simply because the child has an autism diagnosis. Many end up going into severe debt to pay for the treatment; some lose their homes, declare bankruptcy, go on welfare, etc. Others simply can't pay and their children go untreated. Without vital therapies, these children are almost certain to never be able to live independently, hold down a job, and have meaningful relationships. They are cared for by their parents for the rest of their lives, sometimes becoming wards of the state when their parents die or can no longer care for them.

It does not have to be this way. Proven therapies such as Applied Behavioral Analysis (ABA) can dramatically increase the success rate in helping children with autism overcome their challenges, eventually being mainstreamed in public education. (Senator Shiozawa can provide results from the state's pilot program for government employees if you'd like to see details.) They can grow up to become self-sufficient, contributing members of society. Their families will not have to choose between their financial well-being and getting therapy for their child.

Providing this therapy does not result in a significant increase in insurance cost. While insurance lobbyists warn that small business will drop coverage for their employees due to increased cost, the facts paint a different story: there is no data from any of the 34 states that have passed autism insurance reform to suggest that this has happened. Findings from other states that require this coverage show that the average cost increase is a mere $0.15 per member per month for the first year after implementation, and only $0.31 the second year (due to increased awareness). In fact, many small businesses in Utah support autism insurance reform. I work for one of them!

This is not a partisan issue. States from both sides of the aisle have passed laws to end insurance companies' discrimination against children with autism. The fact is, society will pay the cost of autism one way or another. We will either pay it in insurance premiums, or we will pay it through welfare. Making this coverage available to Utah children helps keep families financially secure, reduces the people's welfare burden, increases the taxable base, ends discriminatory behavior by insurance companies, and does great personal good. It's not just the compassionate thing to do, it's the fiscally responsible thing to do.

I urge you to please vote “yes” on SB 57.


Robert J. Walker

Friday, May 25, 2012

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

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

Promises Broken

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!

Friday, January 20, 2012

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.

Wednesday, September 7, 2011

Response from Senator Hatch

I received a reply to the letter to Senator Hatch I sent in July. Actually, it came a while ago and I just hadn't gotten to posting it here. Note that the HELP Committee meeting was postponed twice, so the meeting date isn't the same. The footnotes give my commentary on his response.

August 11, 2011

Mr. Robert Walker

Dear Mr. Walker:

Thank you for writing to express your support for legislation related to autism spectrum disorder (ASD).1 I appreciate hearing from you and value your input as a father of children with ASD.

As you know, recent scientific revelations that the prevalence of autism could be as low as one in 150 individuals2, and that there may be a genetic link to autism, point out the need for continuing research.

Senator Robert Menendez introduced the Combating Autism Reauthorization Act (S. 1089) on May 26, 2011, and it has been referred to the Senate Health, Education, Labor and Pensions (HELP) Committee. The original Combating Autism Act (P.L. 109-416), which was signed into law in December 2006, was passed to provide better integration of the health, education, and disability programs already available.3 S. 1089 would reauthorize CAA for another five years.

As you know, the HELP Committee is now expected to consider this legislation in September.4 As a member of the HELP Committee, and an original cosponsor of the 2006 autism law, I will bear in mind your insightful comments when CAA reauthorization legislation is considered by the Committee.5

Again, thank you for writing.

Your Senator,
Orrin G. Hatch United States Senator


1 It really ought to say “autism spectrum disorders” (plural) here. He speaks about it as if it were a single disorder, despite the word “spectrum” in the name. Not a major point, but it is an indication that Sen. Hatch may not be very knowledgeable about autism spectrum disorders.

2 The numbers vary depending on who you talk to. It's difficult to get good numbers on autism prevalence because a lot of people go undiagnosed for years, different countries have different diagnostic criteria, and the diagnostic criteria have changed over time. The CDC reports that autism prevalence in children is estimated to be somewhere between 1 in 80 and 1 in 240. (The average, 1 in 110, is typically the number cited.) Prevalence is lower (meaning a smaller percentage of people affected) when you include adults because some adults are undiagnosed and because therapy helps some people with autism to eventually overcome the symptoms and no longer manifest as having an ASD (though technically they still do). Prevalence appears to be increasing dramatically, but it is undetermined whether that is due solely to increased awareness and broader diagnostic criteria or there is an actual increase in incidence of ASDs.

3 I feel this is something of an understatement. The Congressional Budget Office estimated in 2006 that the original bill would result in a $300 million increase in autism spending, which included significant increases in amounts for biomedical research grants.

4 Specifically, after being delayed twice, they were slated to meet on it today.

5 The Senator avoids stating his intentions with regards to the bill. This is not surprising, as between the time he wrote it and today he might find new information that may change his position on the bill. Having sponsored the original bill, one might expect that he would support extending it, and the language indicates a positive inclination towards it. However, while he was a co-sponsor on the original bill, he is not co-sponsoring this one, which says to me that he is at least less favorable towards it than he was previously. I'll definitely be keeping an eye on this bill.

Thursday, July 28, 2011

Letter to Senator Hatch

The Honorable Orrin Grant Hatch
104 Hart Office Building
United States Senate
Washington, DC 20510

Re: SB 1094

Dear Senator:

On Wednesday, August 3 at 10:00 am in room 430 of the Dirksen Senate Office Building, the Health, Education, Labor and Pensions (HELP) Committee will be meeting to discuss SB 1094, the Combating Autism Reauthorization Act of 2011 (CARA). This bill proposes to extend the original sunset date (September 30, 2011) of the Combating Autism Act of 2006 (CAA) for another three years. As you are a member of the HELP Committee, I am writing to ask you to attend this meeting and to vote in favor of SB 1094.

There is still a lot we don't know about autism, and continued research is desperately needed to better understand Autism Spectrum Disorders (ASDs) and discover ways to help those who are afflicted with them. Our own University of Utah has made significant strides in autism research. This research would be severely curtailed without the funding that SB 1094 would authorize.

I understand that there is currently a major focus on federal spending, and that there are many who would be inclined to vote no on this bill, feeling that it cannot be afforded. I am of the opinion that while we do need to cut back on many programs, we cannot afford NOT to fund this research. Only a small percentage of autistic individuals eventually become able to hold jobs; most are financially dependent on family members or the state for their entire lives. Since many states (including Utah) do not require insurance companies to cover autism therapy, many families go into severe debt to pay for therapy for their child(ren). Frequently, these families end up in bankruptcy and living on welfare as a direct result of these expenses. Add to that the lost productivity from these individuals and their loved ones who must care for them, and the expense to our nation due to autism is immense.

Research can help us find more effective and less expensive therapies. Beyond the great personal good this research can do, from a purely financial standpoint every individual who is recovered and becomes self-sufficient will be an asset to the state instead of a burden. (Additionally, if Utah were to require insurance companies to cover autism therapies, families would be able to afford therapies for their children and fewer would end up on welfare.)

My 5-year-old daughter, [NAME REDACTED], has autism, and my 3-year-old son, [NAME REDACTED], has Pervasive Developmental Disorder (PDD-NOS), which is also considered an ASD. I would do anything I could to help them to live full, productive lives. This research would be valuable to them and to people with ASDs across our nation. I respectfully ask that you please attend next Wednesday's meeting and vote yes on SB 1094.

Thank you for taking the time to read this letter.


Robert J. Walker