Time for Action

This weekend, I finally had a chance to read through the proposed GOP Health Care Bill, called the American Health Care Act of 2017 (AHCA).  I read proposed laws and regulations for a living,  but this Bill left me concerned and upset in a way few other pieces of legislation have done. Put simply, it poses a direct threat to the disability community, one we need to address with a single voice.

This bill is the clearest threat to disabled kids and adults that I have seen in a long time.  The bill would end Medicaid as we know it, prioritizing tax cuts for individuals making over $250,000 over health care for Americans with disabilities.  Amendments to the bill have so far made it worse for disabled Americans, not better.

Why all the fuss about Medicaid?  Medicaid is typically the only health insurance plan for persons with disabilities who have limited income, including the majority of autistic adults.  

However, there is still hope.  Politicians across the political spectrum are still calling for changes to this bill.  The bill will be amended before it moves forward.

Our community needs to be heard during this debate.  We must speak with a unified voice and tell Congress that they cannot take health care coverage away from autistic adults or children.  Here are the action steps all of us need to take:

1. I have drafted a letter template drafted for you to use as a base for writing to your representatives: here.  Copy the text into an email and modify it as necessary to fit your circumstances.
2. Send the letter to both of your Senators:  here.
3. Send the letter to your Representative:  here.

Too much work?  Send your letter to me, including your full address, and I'll deliver it for you, in person, with one of my autistic children.  Just paste the letter into an email, modify it and include your address, and email it to me: here.  I'll handle any printing or delivery costs. Any letters I get by noon on Thursday, March 30 will be delivered in person.

Here are some additional talking points you can use in your letter:

• This is not a "left vs. right" issue.  Medicaid is incredibly cost-effective. As noted in the article linked above, Medicaid is far more efficient than any other part of the American health care system.  Medicaid costs 22 percent less per adult beneficiary than does private insurance.   
• Medicaid is the most important disability benefit program in the country, by far.  Medicaid is typically the only or primary health insurance plan for persons with disabilities who have limited income. 
• Medicaid waiver programs have expanded coverage to disabled children who have working parents, diverting costs that would otherwise need to be borne by the private insurance market.  Medicaid’s supports are essential for parents preparing their disabled children to be productive members of society.  
• They are even more essential for autistic individuals who will never work.  For these individuals, Medicaid provides essential support to ensure that disabled individuals continue to receive care in the community where they live, rather than in the more restrictive and much more costly institutional setting.  The current Republican health care bill would take that support away.
• Despite Medicaid's incredible efficiency, covering more expensive conditions at a lower cost than private insurance, Congress continues to under-fund the system.  Many parents of severely disabled children have been on a Medicaid waiting list for years, in most cases missing out entirely on coverage during those critical "early intervention" years.

One more thing.  Tomorrow I'm going to be reminding you to call your Senators and Representatives. Even after you send the letter, you still need to call.  Your child's access to health care may well be at stake. Don't let Congress mess this up.

Disability Rights at the Supreme Court

The line to get in for oral arguments

I spent my morning at the Supreme Court listening to oral arguments in the special education case Endrew F v. Douglas County School District.  It's a critical case for our community, with implications for anyone who has a child with disabilities or who needs access to special education.

First, a bit of background:  a federal law called the Individuals with Disabilities Education Act (IDEA) requires that (in return for federal funding) states provide disabled students with a "free and appropriate public education" (commonly referred to as FAPE - get ready, the blizzard of acronyms is just starting).  To carry out their mandate, school and district officials must partner with parents to come up with an individualized education program (IEP).  The IEP sets goals for the student for the year, against which the school can test progress.  

Now, for many kids, even getting to that point is a struggle and having an IEP put in place is a victory in and of itself.  However, the case before the Court today confronted a different question: what are the school's obligations to students who fail to make substantial progress on their IEP goals, despite the accommodations offered by the school?  Courts have, of course, confronted this question in the past, but answers have been mixed.  

The first Supreme Court case on the matter was Board of Ed. v. Rowley.  The student at issue in the Rowley case was making solid progress toward her educational goals, but was not meeting her full potential.  She was a deaf student who had been provided with a hearing aid, but whose parents were requesting a sign language interpreter in class.  The Court in Rowley declined to set forth a standard that would require schools to "maximize the potential of" their students.  Instead, the Court set forth the following standards for courts reviewing FAPE claims:

[A] court's inquiry in suits brought under § 1415(e)(2) is twofold. First, has the State complied with the procedures set forth in the Act?  And second, is the individualized educational program developed through the Act's procedures reasonably calculated to enable the child to receive educational benefits?   If these requirements are met, the State has complied with the obligations imposed by Congress and the courts can require no more.

The lower federal circuits split on the meaning of this standard, with most settling on a reading that the law required that students be provided with "some educational benefit" that is “merely. . . more than de minimis.”  Since the Rowley decision, congress has revisited the statute twice, enhancing procedural protections for parents but not changing the language requiring provision of a FAPE. The question in Endrew is whether this "more than de minimus" standard is sufficient to guarantee that students receive a FAPE.  Given the discussion in the Court this morning, I'm cautiously optimistic that the Court will move away from the de minimus standard.

When I finally got in (security at the Court is serious) arguments had already begun and the Justices were focused on resolving outstanding questions they had related to the facts, rather than the legal framework. For a good discussion of the underlying facts, the petitioner's brief is helpful, starting on page 8.

When the justices did eventually turn to the framework, there was much discussion of alternatives to the "de minimus" standard. Endrew's counsel argued that various amendments to IDEA pointed to the conclusion that the FAPE standard obligates schools to "provide children with disabilities 'substantially equal opportunities' to achieve academic success, attain self-sufficiency and contribute to society."

The acting Solicitor General, Heath Gershengorn, followed the petitioners and argued on behalf of the United States that the de minimus standard was not sufficient.  IDEA, the United States argued, requires that states provide students with the opportunity to make "significant educational progress."

Although these standards were both clearly more rigorous than a de minimus standard, counsel for the school district argued that the inconsistency between petitioners' position and that of the government was telling: they're asking the court to make up a new standard, he argued, a job best left to congress. Further, the school district argued that there was not even a real conflict for the Court to resolve.  Most circuits had decided that "more than de minimus" was an appropriate standard that, as applied, provided students with some educational benefit, as required by Rowley. 

However, the District's counsel fell into a bit of a trap when answering a question from the Chief Justice.  Both parties agree that, under Rowley, a student must receive some benefit, but does that mean some benefit, or does that mean some benefit? In other words, does the Rowley test ask whether the student is receiving a marginal benefit, or does it ask whether whatever benefits the student is receiving are. . . actually beneficial?  The District appeared to agree that there had to be an actual meaningful benefit to the student, but fell back on the argument that the de minimus standard was being applied to ensure that actual benefits were provided in most cases.  

This admission, however, begs the question: if the de minimus standard doesn't mean what it says, how can it be the appropriate standard?

Most justices seemed to believe the law required that students receive actual, meaningful, benefits, and nearly all appeared to agree that the de minimus standard did not accurately represent what the law required.  Although I had expected arguments tailored closely to the ears of Justice Kennedy, this was the rare case where I saw substantial potential for cross-partisan alignment.  Some of the School District's arguments about limitations on spending clause legislation (which were largely brushed aside by the Court) could possibly appeal to Thomas and Alito, but Justice Roberts repeatedly turned away from those arguments and back to attempts to craft a standard that would accurately reflect the language of the statute.

I would be surprised if the de minimus standard survives, and that is good news for students who need accommodations from their schools.

Do Autistic Lives Matter?

An autistic man was killed by the police last week, this time in Kansas. It sounds like his crime was not doing what he was told. This follows on reports of a deaf mute man being shot for similar reasons. Here is all we know at the moment:

"On Thursday afternoon, Joseph Weber was pulled over by a Hays Police officer. Weber became flustered and took off in his car. We now know through emails from some members of Weber’s family that he was autistic and had very low verbal skills.

According to a news release from the Ellis County Attorney’s Office, Weber drove off from the initial car stop and was pursued by an officer. When he was stopped a second time, police said he got out of his car and wouldn’t follow directions of the officers. That’s when an officer shot and killed him. It’s still unclear why Weber was pulled over in the first place. . . ."

Again, all we know from the report is that he was shot because he did not comply with police orders. There is no indication he was armed, that he was aggressive, or that he threatened police in any way - if he had, we have to assume the authorities would have stated so up front. If this proves false, I'll be happy to update this post, but I'm not holding my breath.

At this point, I'm just completely numb to these killings, which is . . . awful. I don't have any solution, I don't have any productive way to respond. Can we please, please, train police officers to respond to noncompliance with non-lethal force?

It appears that autistic lives continue to be cheap, as disabled lives have always been. I wish autistic lives mattered.

#AutisticLivesMatter

Guns

I'm going to get back on my political pony here, and flog it a bit.  If it's not your thing, that's fine.  Skip the post, and I'll be back to autism in a bit.

I want to talk about the recent police killings: we've seen cops killing civilians and people targeting the cops with assault rifles in retaliation.  Things have gotten so out of hand, but I've yet to see anyone address the obvious cause.  And despite the horrific headlines, no one has any apparent answers.

If you are confused about why this is happening, the answer's actually pretty simple: our gun laws.

Easy civilian access to high-powered weaponry makes every single situation involving police officers more dangerous.

Why?  Because the police here in the U.S. have to deal with the very real possibility that any person they encounter could be packing heat, which leads to them making the (completely reasonable) assumption that everyone they have to deal with is armed and dangerous.

Police are just like us: they want to get home safely, period.  That is their primary concern when dealing with a dangerous suspect, and I don't blame them at all for assuming the worst of us.  You can't trust just anyone with the capacity to inflict immense violence on a whim, and I would go so far as to say that many (not all) of the people most inclined to carry guns around in public are the people I would trust least to use those guns responsibly and safely.

Take this gentleman for example:

Probably a good thing he didn't have an assault rifle, eh?

But even with a machete, hands up if you think this man survives in the U.S.  No one?  You're right - he'd be dead in 10 seconds.  This is a psychotic break - he is quite clearly in the midst of a mental health crisis.  Should we kill people for being mentally ill?  Obviously we should not, but of course we do. 

This is the U.S. approach:



Now none of this is to dismiss the role of systemic and individual racism, both conscious and unconscious, in the shootings we are seeing here in the U.S.  It is clear that black men are killed by the police in disproportionate numbers:


But why are so many Americans killed by the police, period?  The answer is clear and obvious.  Guns.

The numbers are simply shocking.  I strongly encourage you to read this article comparing police shootings between countries.  U.S. police kill more people in days than other countries' police forces do in years.  It's simply intolerable.  Police should protect and serve communities, not impose violence on them. 

The common denominator for countries with lower rates of police violence: restricted access to firearms and heavy controls on how and when those firearms may be carried and used.

Police reflexes that are developed to account for suspects with guns increases the risk of death for even those suspects, without guns.  When your basic assumption is that a lightly armed suspect will be taken down with mace, batons, and riot shields, you're a lot less likely to kill people.  Conversely, when you must assume that literally any situation could turn deadly in an instant, a healthy respect for suspects' lives is less likely to enter your training materials.

There are many good ideas for reducing numbers of deadly police shootings, but the simplest approach would be to limit access to guns.  With a less heavily armed population, police can safely focus on resolving dangerous situations instead of fearing for their life in every confrontation they have with a civilian. 

Sadly, I fear this is politically impossible and the madness we've seen in the last few days will continue.  I'm so sad for my country.

More Tori

The Autism Platforms

Look guys, my cute kid with a cat! But enough of that, let's talk about politics!!!  It'll be SO MUCH FUN!  Seriously, you're gonna love it.  I promise. [Insert poor Trump imitation here].

One of the things I like most about Hillary's campaign is that she has an explicit autism platform.  You should read it.  Seriously.  Click the link - I'll wait.

It's not perfect, but, overall it's a huge step forward.  I love it for several reasons.  First, it's obvious that whoever wrote the platform is fully aware that autistic individuals are 1) not just kids; 2) best served in their communities whenever possible; and 3) in need of drastically more services than they currently receive, regardless of their age.

Whether it's improved access to AAC devices for less verbal populations, improved access to housing opportunities for adults, or expanded support for caregivers, the disability advocacy community should feel heard.  I could quibble, but it's by far the best disability rights platform ever put out by a major party candidate, and we should give credit where due.

Bernie has a good background on disability rights and has co-sponsored pretty good, if limited, legislation related autism (some components overlapped with Clinton's plan, above).  He wants to expand access to health care generally, which is good for the disability community.  His candidacy is still a long shot, but I'm not that worried.

Meanwhile, on the other side of the aisle, we unsurprisingly have junk science and scare tactics.*

Trump's position on autism, that it's an epidemic and all the scary vaccines are to blame (it's not and they aren't), conveniently allows him to avoid making any plans to help actual autistic people or their families.  Instead, we should all be afraid of needles.  When pressed recently on his plan to help increase employment for autistic adults, Trump said, "We're gonna work on that. You'll be happy, just watch."

Details?  None.

I'm shocked.

Oh, but he does want to turn Medicaid into a block grant program, which will dramatically cut funding for the most important disability insurance program in the country):

Medicaid is typically the only or primary health insurance plan for persons with disabilities who have limited income. Additionally, an increasing number of individuals with disabilities are looking to Medicaid as their primary health insurance plan, notwithstanding higher levels of income. Medicaid may be available to those individuals through state-specific Medicaid waivers, through optional Medicaid buy-in programs, or through the section 1619(b) provisions, all discussed below. A lack of adequate health insurance is often cited as a primary barrier to both the ability to live in the community and the ability to succeed in employment.

Cutting Medicaid is nonsensical, except as a giveaway (and a poor one at that) to private insurance companies.  "[Medicaid] already costs significantly less per beneficiary than private insurance does, because it pays health providers much lower rates and has considerably lower administrative costs." Link. 

Trump also would repeal the Affordable Care Act, which in most cases mandates insurance coverage of Applied Behavioral Analysis therapy, the only therapy that has proven an effective treatment for autistic kids.

Without proven treatment options, desperate parents often turn to snake oil salesmen and their "experimental" treatments.  These treatments are, at best, ineffective.  At worst, they cause outright harm.

Let's elect the candidate with a plan.
#neverTrump


*Vaccines do not cause autism.  Period, end of story.  There's no debate.  This is not an opinion, this is a scientifically demonstrated fact.  If you want a debate, go elsewhere, because your facts are wrong.

Never Trump

So. . . . guys. Fair warning:  I'm gonna be talking about politics in here for the next few months. Don't worry, I'll keep up the fun autism anecdotes and pictures of my startlingly good looking children, but there will also be a healthy dose of left wing politics. If you don't want to hear it, feel free to hide me from your timeline for a while. I don't have much (okay, any) real influence, but in the spirit of doing what I can, I'll write about political issues when I have time.

Trump cannot, I repeat, CANNOT become president. Somehow the Republicans have managed to dog whistle their way into becoming the type of party where outright racism, homo/transphobia, and xenophobia are actual successful strategies for garnering a majority vote. And that's fine, I suppose (we'll never get rid of all the racists in this country) so long as we don't allow this country to follow that example.

A lot of us have disabled kids or relatives. Take a good look at this picture and tell me how well you think they'll fare with this jackass in charge. This is not who we are. Let's make sure that it isn't who we become.