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.

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
[ADDRESS REDACTED]

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,
[SIGNATURE]
Orrin G. Hatch United States Senator

OHG:kll

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.

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.

Sincerely,

Robert J. Walker

For the record...

This post is to attempt placate certain individuals who are upset with my entry into a contest. It is probably not of interest to those who typically read this oft-neglected blog.

This is an example of one of the SQL queries that I wrote for my digital kanban board:

select
    a.AssignableID as 'id',
    et.Abbreviation as 'type',
    g.Name as 'name',
    es.EntityStateID as 'stateId',
    a.Effort as 'effort',
    b.SeverityID as 'severityId',
    a.ProjectID as 'projectId',
    a.IterationID as 'iterationId'
from Assignable a
join EntityState es on a.EntityStateID = es.EntityStateID
join General g on a.AssignableID = g.GeneralID
join EntityType et on g.EntityTypeID = et.EntityTypeID
join Project p on a.ProjectID = p.ProjectID
left outer join Iteration i on a.IterationID = i.IterationID
left outer join General i_g on i.IterationID = i_g.GeneralID
left outer join Bug b on a.AssignableID = b.BugID
left outer join Severity s on b.SeverityID = s.SeverityID
where
    es.Name <> 'Backlog' and
    p.IsActive = 1 and
    (g.EntityTypeID = 4 or g.EntityTypeID = 8) and
    (getdate() between i_g.StartDate and dateadd(d, 7, g.EndDate) or es.Final = 0)
order by s.Importance, a.Effort desc

We have a user story state called "Backlog", which we're omitting in this query using the first item in the where. (Personally, I think backlogging should be done simply by taking it out of the iteration, but that's my opinion.) We also check to make sure we're not showing items from inactive projects (p.IsActive = 1), that we're only showing user stories and bugs (g.EntityTypeID = 4 or g.EntityTypeID = 8) and that the iteration it belongs to is active or the item is still open even if the iteration has finished (getdate() between i_g.StartDate and dateadd(d, 7, g.EndDate) or es.Final = 0). Note that when an iteration finishes, the items from it continue to appear for a week afterward.

This should be enough to convince reasonable individuals that I did indeed write this myself, not that writing it myself was even a criterion for consideration in the contest in the first place.

Update: Here's a video demo of it, hosted by myself.

Thirsty for MythBusters?

I've not had much experience with drinking games, what with being a Mormon, and therefore a teetotaler. Still, a similar sort of fun can be had with non-alcoholic beverages, with the goal changing from (not) getting smashed to trying to see who can avoid having to go to the bathroom the longest. So in anticipation of the new episodes of MythBusters coming out on October 6, I present my lovingly-crafted MythBusters drinking game. There are a few others out there; I shamelessly stole the best ideas from them and added my own. By default, each event requires one (1) sip when it occurs; those that are worth more are noted as such.

Any Cast Member

• Gets hurt (+2 if it's not Adam or Tory, or if it isn't their own fault)
• Gets drunk (+1 if it's Grant or Kari, +2 if it's Jamie and you can actually tell)
• Throws up (+2 if it's not Adam or Grant)
• Gets censored for cursing (+2 if it's Grant or Kari)
• Fails a driving test or otherwise performs poorly behind the wheel (+1 if they aren't impaired in some way at the time)
• Uses a calculator (+2 if it's Kari)
• Says something like “Well, you know we can't just leave it at that...”
• Unnecessarily abuses a dummy (+1 if it's a cast of Grant's head)
• Cites online criticisms of earlier experiments
• Adds unnecessary decorations to a prop (+2 if it's Jamie)
• Likeness appears in an animation (+1 if said likeness gets injured or killed)
• (2) Tells the audience not to try this at home (other than the standard warnings at the start and middle)
• (2) Is prevented against his or her will from participating in a test due to insurance concerns

Jamie Hyneman

• Says, “When in doubt,...” (e.g. “C-4,” “lubricate”)
• Calls Adam a big baby or makes a similar remark about his complaints
• Talks very seriously to others about safety
• Gets upset about a mess or damage to his shop or equipment
• (2) Berates someone for screwing up an experiment
• (2) Brings out the lard
• (2) Removes his beret
• (2) Giggles
• (3) Gets truly excited
• (3) Permits someone to touch his mustache or beret
• (3) Gets his white shirt dirty, or removes it to prevent this
• (3) Loses a “build-off”

Adam Savage

• Juggles or performs magic
• Displays his filthy hands
• Calls Jamie by something other than his actual name (e.g. “Heiney-man,” “Silent Walrus”)
• References Jamie's age, past occupations or extraterrestrial origin
• Mimics Jamie's mustache with his hands or another object
• Rides a Segway
• Says “Science!” enthusiastically
• Wears a self-referential T-shirt
• Speaks with an accent (+1 for the David Attenborough one talking about “The Hyneman”)
• (3) Singes his hair

Kari Byron

• Employs her artistic skills
• Screams when startled
• Incorrectly predicts the outcome of a test
• (2) Is repulsed by meat
• (3) Has a baby

Grant Imahara

• Builds or suggests building a “robot”
• Brings out Deadblow
• (2) Commits a mathematical error
• (3) Becomes frustrated or upset

Tory Belleci

• Someone refers to his Italian heritage
• Gets volunteered for something painful or potentially dangerous (+1 if called a “dummy”)
• (3) Wears women's clothing
• (3) Speaks in a nerd-lisp accent

Miscellaneous

• Something explodes, launches, crashes, shoots or incinerates (+2 if it was unintentional, unnecessary, or made out of meat)
• Buster gets busted, burned, dropped, hurled or in some other way abused
• The fire department or paramedics are on hand, “just in case”
• A previously-built rig is reused
• A radio-controlled vehicle fails to stop when it should (+2 if someone is inside when it happens)
• The high-speed camera is used in situations where it wouldn't yield any data which would be useful for testing the myth, but because the footage is fun to watch (e.g. Adam getting slapped)
• Testing is shown taking place at a gun or bomb range, decommissioned military facility, or NASA laboratory
• The “WARNING: Science Content!” plate appears
• (2) A “human analog” (a.k.a. pig carcass) is brought in
• (2) The Build Team has a myth which is significantly cooler than Adam and Jamie's
• (2) Real human body parts or fluids are used in an experiment
• (2) A small-scale experiment fails, but they go full-scale anyway
• (3) A revisit overturns the original findings for a myth
• (3) Someone's entire body is coated with a substance (e.g. metallic paint)
• (3) Essential steps or ingredients for a test are censored
• (3) No definitive conclusion is reached for a myth
• (3) A myth result is bafflingly counterintuitive (e.g. mouse vs. elephant)