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Supreme Court unanimously decides: Special Ed students deserve more than the bare minimum

22 Mar

The U.S. Supreme Court decided today on an important Special Education case: Endrew F. v. Douglas County School District. The case involved an autistic student from Colorado who also has and ADHD diagnosis. The school district argued that they only had to offer a program that was above the bare minimum of education, basically show any benefit, to be appropriate.

NPR reports this as The Supreme Court Rules In Favor Of A Special Education Student, including this paragraph:

School districts must give students with disabilities the chance to make meaningful, “appropriately ambitious” progress, the Supreme Court said Wednesday in an 8-0 ruling.

The decision was written by Chief Justice Roberts. He is quoted by an Education Week blog (Unanimous Supreme Court Expands Scope of Special Education Rights):

“When all is said and done, a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all,” Roberts said.

“For children with disabilities, receiving instruction that aims so low would be tantamount to ‘sitting idly … awaiting the time when they were old enough to drop out,'” he added, quoting from key 1982 Supreme Court precedent on special education, Board of Education of the Hendrick Hudson Central School District v. Rowley, that also dealt with the Individuals with Disabilities Education Act.

“The IDEA demands more,” the chief justice said. “It requires an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”

I will add: making progress in light of the child’s circumstances is what we expect for all students. This may be seen as “expanding the scope” of special education rights (as Education Week put it), but it is just brining special education rights up to the same standard as everyone else.


By Matt Carey

Study claims gluten free diet leads to higher levels of heavy metals like mercury

6 Mar

One of the purported treatments for autism is the Gluten-Free/Casein-Free (GFCF) diet. Studies have failed to find a benefit, but the idea persists. Especially among those who believe that autism is a vaccine injury (it isn’t) and that mercury in vaccines contributed to the rise in autism rates (it didn’t).

So there is a huge irony in the possibility, as a recent study suggests, that people on a gluten-free diet have higher levels of mercury and other heavy metals

The study is The Unintended Consequences of a Gluten-Free Diet.

The full study doesn’t appear to be available. This looks like a conference abstract.

That said, check out this table:

table

Total mercury in the blood is 1.7 times higher in people in the gluten-free diet group than in the overall population.

Now, it looks like the units in the table are ng/l, so a total mercury level of 1.3ng/l (that in the gluten-free group) is still well within the normal range (<10ng/l).

Of course it is also worth mentioning that those who promote the gluten-free diet for autistics often have the attitude that no mercury level is safe (which is tough, since there is mercury at some level in just about everything).

So, yeah, ironic but not dangerous. By pushing the gluten-free diet, people may have pushed autistic kids into higher levels of mercury in their blood.

Do we expect Robert Kennedy, SafeMinds, Mark Blaxill, JB Handley, Generation Rescue or any of the others in what was once called the “mercury militia” to inform their groups about this? Sure, if they are really about autism and not about attacking vaccines.

Which is to say, I doubt it.

By Matt Carey

How I spent the Disability Community Day of Mourning

2 Mar

Yesterday was the Disability Community Day of Mourning. A day to reflect back on the fact that many disabled people are murdered by those closest to them. And that our society downplays those murders. Recently, for example, the murderers of Alex Spourdalakis were let off with a short sentence and an “involuntary manslaughter” conviction.

Involuntary manslaughter.

Alex’s former mother and former godmother (how can one claim those titles after such an act?) tried to poison him with a drug overdose. When that failed they stabbed him multiple times and slit his wrist, almost severing his hand.

Involuntary manslaughter usually refers to an unintentional killing that results from recklessness or criminal negligence, or from an unlawful act that is a misdemeanor or low-level felony (such as a DUI). The usual distinction from voluntary manslaughter is that involuntary manslaughter (sometimes called “criminally negligent homicide”) is a crime in which the victim’s death is unintended.

Involuntary? Calling that involuntary is a signal that disabled lives matter less.

I didn’t intend to do something as a marker of the day, other than remember some people who specifically break my heart as well as the many, many whose stories I do not know.

No. Instead I went about my life as I often do. I took my family out to dinner at a favorite restaurant. OK, my wife wasn’t there, but we often go out on evenings when the other isn’t there. It’s sort of our way of saying, “OK, since you are having fun, so will we”.

At the restaurant we walked in and the owner looked up and gave us a big smile. He knows us. He knows my kid will be very obviously autistic during dinner. He knows that his entire restaurant will experience this. And he smiles. And he takes our order, by asking us if we will have our regular dishes.

When we were done I could hear the owner offering to move the people in the table behind us. I thought perhaps we were disturbing them, so I apologized if we were an annoyance. No, I was informed, it was just that there wasn’t much room between that table and the one behind it. In fact, he said, he and his wife enjoyed seeing us as a family enjoying our time out. Our time, our way. Our obviously autistic way.

After leaving it struck me–this may be the family that once paid for our meal. One time we went to the register to pay, only to be handed a note saying that some anymous person liked seeing us so much that they had paid for our meal.

Before those who can’t accept families with autistic children having a happy evening–or complain that by reporting it, we somehow demean the experiences of our communities–there is also this. My kid once had a very serious meltdown there. As my wife left the restaurant (which still welcomes us even though, yes, sometimes we have meltdowns) a woman came out of the restaurant and offered my wife help. She was familiar with autistic kids. Perhaps this helpful woman, this woman who bought our dinner and the family behind us last night were all the same. In the end, it doesn’t matter. There are people who accept us.

They accept us because they see us. Because we aren’t hidden. Because we go out in the world, with our obviously autistic behaviors, our meltdowns, all of it.

Acceptance doesn’t mean that we have no challenges. That my kid’s life isn’t harder than most people’s lives. It does mean that even though it is hard, society isn’t making it harder.

And perhaps, just perhaps, some family who in the future has a disabled kid will look back and say–you know, this is going to be hard for all of us. But remember that family at that restaurant? At least there are places where we can go and people will accept us. At least my kid’s challenges won’t be compounded by a society that shames and disrespects him/her.

And maybe, just maybe, the more families who are out there, the more of us parents setting the example that we accept our children, there will be fewer parents who murder their disabled children.

A father can hope.

By Matt Carey

Katie McCarron, I still think of you often

2 Mar

Today is the Disability Community Day of Mourning.

Every year on March 1st, the disability community gathers across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.

There are so many people who have died. So many who should be here today, except that a caregiver murdered them. Today is for all of them. But for this post, I just want to bring up one, if I may. A little girl who I never met, but think of often. A little girl who would be the same age as my kid.

Katie, you should be here. I shouldn’t know your name, but your family should be showing you the love that I know most of them felt so strongly for you.

Katie McCarron, you will be remembered as long as I live.

katherine-mccarron-2

By Matt Carey

Some of the Possible changes to the Affordable Care Act that will hurt the Autism Communities

24 Feb

One of the major goals of the new American government is the “repeal and replacement” of the Affordable Care Act (also known as ObamaCare). So far we haven’t seen a clear idea of what “replace” will mean. Some features of the ACA have been very helpful to our communities: helping more people obtain healthcare insurance and eliminating the ability of insurance companies to deny coverage based on pre-existing conditions, to name but two.

NPR.org has an article that goes into some other questions about what could change:

GOP Considers Trimming Health Law’s 10 Essential Benefits

Here are a few points that stand out:

Habilitative services

The law requires that plans cover “rehabilitative and habilitative services and devices.” Many employer plans don’t include habilitative services, which help people with developmental disabilities such as cerebral palsy or autism maintain, learn or improve their functional skills, via speech or occupational therapy or other support services. Federal officials issued a regulation that defined habilitative services and directed plans to set separate limits for the number of covered visits for rehabilitative and habilitative services. Those rules could be changed.

“There is real room for weakening the requirements” for habilitative services, says Dania Palanker, an attorney and assistant research professor at Georgetown University’s Center on Health Insurance Reforms, who has reviewed the essential health benefits coverage requirements.

Occupational therapy and speech therapy are very common, especially among very young autistics.

Mental health and substance use disorder services

The health law requires all individual and small group plans to cover mental health services and treatments for substance use disorders. In the regulations, the Obama administration said that means those services have to be provided at “parity” with medical and surgical services, meaning plans can’t be more restrictive with one type of coverage than the other regarding cost sharing, treatment and care management.

“They could back off of parity,” Palanker says.

Mental health parity is how other therapies for autism, including ABA, are funded.

Medicaid expansion is also a big target. Medicaid expansion is how health insurance was delivered to many people who could not afford it before.

Fewer people will be insured going forward. The position of at least one Republican (speaking today at CPAC) is that is a good thing. That means more people have exercised their choice. Unfortunately, that’s not the way things work for those in the disability community, where many are under- and un-employed. We are talking about people whose choice is to have healthcare insurance and who may not after the overhaul of the Affordable Care Act.

As an aside–medicaid also provides a lot of funding for services for people with disabilities. The government currently has committed to pay a set share of the costs of these services. There are plans to “block grant” medicaid, which is a way to limit the amount the government pays. If implemented this will reduce the quality of life for people with disabilities a great deal.

There are major changes possible that could affect people with disabilities. This is the time for parents of those who can not self-advocate to step up and be advocates. This is the time for self-advocates to self advocate.


By Matt Carey

ARC/UCP Action Alert: Act Now to Save Medi-Cal

23 Feb

Changes planned and proposed by the new government could significantly reduce the support for people with disabilities.

The time to act is now. Below is an email sent out by The Arc & United Cerebral Palsy California Collaboration. It is California focused but–you can do this from whatever state you are in. Call your Senators. Call your member of Congress. Let them know: they should vote NO on ALL medicaid cuts.

Act Now to Save Medi-Cal

Dear Developmental Disability Community Friends,

Adults with intellectual and other developmental disabilities overwhelmingly rely on Medicaid (called Medi-Cal in California) for their health coverage.

But that coverage is under serious, major attack in Congress. There are those who want to roll back the 2010 expansion of Medicaid coverage, which was part of the Affordable Care Act, and even cut back coverage that our community had before that.

One plan would give states fixed amounts of money (called ”block grants”) for Medicaid, meaning the state would have to try to find other money to cover the shortfall when the needs exceed the block grants. I think you know what a tough fight it is to get California’s legislature and governor to fund our community’s needs. If the federal block grant falls short and the state doesn’t fill the gap, it would mean people would go without health care.

Another plan would give states a fixed amount per patient, no matter how much care the patient needs. This is called “per-capita allocation.” Again, if the fixed amount falls short and the state doesn’t come up with the money to cover it, it would mean people would go without health care.

There are also plans to impose co-pays and deductibles and Medicaid patients, some of the poorest people in the country. And you can be sure that more bad ideas will surface before we’re done with this fight.

There are lots of people complaining about a lot of things to their U.S. senators and congressional representatives right now. We need to make sure our community’s voice isn’t drowned out.

Here are two things you can do right now:

1. Call Senator Dianne Feinstein, Senator Kamala Harris, and your own congressional representative. Click here to find their numbers and get some suggestions on what to say to them.

2. If your representative is having any public events, get some friends and go to them — and be prepared to talk. Again, identify yourself as part of the developmental disability community. If they are planning to vote NO on ALL Medicaid cuts, thank them. Sometimes we don’t thank our supporters enough. If not, ask them pointedly why not. Sometimes we don’t criticize our non-supporters enough, either.

As someone who worked for state legislators for a long time and got those calls and attended those public events, I can tell you that they sure do get a politician’s attention, alright.

I hesitate to direct you to this link because it’s highly partisan, and our community spans the whole political spectrum. But the tactics it suggests can work no matter where on that spectrum you are. In fact, it’s written by a bunch of Democrats who are copying the Tea Party. Please don’t think we support or oppose this group’s political agenda, because we don’t. But if you are moved to do more than the two steps I’m asking you take now, reading this is a good place to start.

Thank you for your advocacy.

Greg

P.S. One more thing. Please forward this Action Alert to everyone you know in our community. Now’s the time for all of us to get riled up.

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
916-52-6619

Robert Kennedy and Robert DeNiro hold a press conference. No one cares.

16 Feb

Robert Kennedy Jr. has been for many years pushing the failed idea that vaccines cause autism. He’s particularly interested in mercury–you know, that preservative thimerosal that was removed from infant vaccines but didn’t cause autism rates to drop. A while back he actually got the ear of President Trump, coming away with the claim that he would be appointed to run a vaccine safety commission. The Trump team pushed back a bit on that claim, but, seriously, what was Trump doing wasting his time with Kennedy? I can say one thing, as the parent of an autistic child: Trump is doing the autism communities no favors. None at all.

Kennedy held a press conference today, apparently renting some space at the prestigious National Press Club. In order to pull some attention, he had Robert DeNiro along (although DeNiro’s contribution amounted to “I agree with what Kennedy said”). Kennedy has long been short of facts. So he didn’t present any new facts, or even alternative facts today. Instead he pulled out another attention grabbing gimmick: he says he will pay a journalist $100,000 if said journalist can present a study that shows mercury in vaccines is safe.

Lacking in the offer is a definition of safe.

Say, for example, we define safe as per how Kennedy usually defines unsafe: is the rise in autism diagnoses due to mercury in vaccines? Well, there are many studies which show that mercury in vaccines did not cause the rise in autism (and, since this is the backbone of the “mercury causes autism” argument, that argument fails as well).

But Kennedy knows the studies. He’s already denied their results.

What he also knows is that California pulled thimerosal from vaccines a long time ago (2006 to be exact). Infants and pregnant women in California get thimerosal free vaccines. And the number of people diagnosed with autism has continued to rise ever since. Heck, that’s got to be worth at least $10,000.

He got more press than I expected. Not much but some. Here’s some examples:

Cause Celeb: Robert De Niro continues to question vaccines

Cause: Vaccine safety. Specifically the debunked link between mercury found in early childhood vaccines and autism, a claim the Centers for Disease Control and Prevention has unequivocally refuted

Robert De Niro and RFK Jr. have joined forces to push vaccine nonsense

De Niro, Bobby Kennedy son offer $100K for anti-vaccine journalism

This picture (from Buzzfeed if memory serves), pretty much sums it up.

bored-bobby

By Matt Carey