Together!

An injury to one is an injury to all.
-- labor-union motto

Joy's been developing new favorite / happiest / funniest-words-in-the-world. (Remember yawns? And panda / Santa?

This April, just in time for Autism Awareness Month, she's picked on an especially good one.

"Together!"
It actually comes out somewhat like "GEH-guh!" But she wants people around her to say it right. She'll come up to you and say "geh-guh" to request that you say "together" for her. Her school staff put this together (heh!) with the song:

The more we get together, together, together,
The more we get together,
The happier we'll be!

Four "geh-guhs" for the price of one, what a deal!

"Together" is a powerful core for Autism Awareness Month. Awareness leads to action, and action gains power when people work together.

I've been running around like crazy these past weeks, trying to get set up to take advantage of Autism Awareness Month opportunities for letting people know about the autism-related issues in Wisconsin around the state budget legislation (Medicaid! and Education!) and threats to the autism insurance mandate.

One result of that scrambling has been a new advocacy page on the website of the Autism Society of Greater Madison. There's been a press release. There's been a legislator letter. There's been a budget handout. There's been the organizing for a presentation on autism and the Wisconsin budget (at which it looks like I might even be doing a little bit of presenting, though I'm not the main attraction by any means.) I've been meeting lots of people, doing lots of autism-related networking.

But it's a bigger "together" than that. With all the new legislation-based threats to people with autism in Wisconsin, not a single one of those threats is specific to autism. In fact, the word "autism" is not even mentioned in either the budget or the health insurance mandate-busting bills.

What a stunning opportunity to join coalitions and make common cause with other disability groups and other issue groups!

The coalition groups have really been out in front with legislative positions and actions. Remember the Medicaid-related press conference back on February 20? A coalition effort. There's a coalition that's working on the mandate-busting issue -- based on a coalition that originally formed in support of mental-health parity a few years back. There there are longer-term established cross-disability organizations and coalitions that throw events like the Disability Advocacy Day that just happened in Madison on April 6, and put out materials like this impressive suite on the budget.

It is good to be tapping in to all these levels of group action. There's something of a progression that could almost be charted like this:

autism ==} developmental disabilities ==} special healthcare needs ==} health care

or

autism education ==} special education ==} education

When you get to the bigger coalitions staffed with professionals, there's a whole new level of access and clout. I'm really looking forward to seeing what connections I can help foster, and what my special-interest (autism) group can both gain from, and contribute to, larger group efforts.

Together.

Today I'm headed out for more networking at the Autism Society of Wisconsin annual conference. Tomorrow our whole family is participating in a local Autism Awareness Month fundraiser, "One Walk, Big Strides for Autism" walk.

Lots of "together." Happiest thing in the world, right now!

Medicaid and What Passed the WI Senate Last Night

Rose and I went to the Capitol for an hour last night. We stood with our signs as the crowd demanded to be let in and speak the outrage over the bill that passed the Wisconsin Senate last night. In a nutshell, the Republicans in the Senate replaced the so-called "budget repair bill" with just the supposedly non-fiscal items from the bill, so they didn't need a budget-level quorum to go ahead and have the vote. That's right folks, the "budget-repair" bill that passed last night is the non-budgetary stuff. (Shame on them. Shame.)

They intend to have the Assembly pass the bill this morning. They have the votes. Then the governor will sign it, and collective bargaining as we know it for public employees in the state of Wisconsin will be gone.

A version of the provisions surrounding rule-making on Medicaid was in the bill. However, it is not the full outrage that was in the original budget-repair bill. It appears they have blinked at least so far as to leave the standard administrative-rule making process intact. They did not give themselves the power to do it behind closed doors -- though the outlines of what they're now going to do in broad daylight are ugly enough.

Here's a quote from the Save BadgerCare Coalition Facebook page, from Jon Peacock of the Wisconsin Council on Children and Families:

the new version doesn’t give DHS any new rulemaking authority, yet they can still use rules to supersede nearly all of the portions of MA law, and they could probably use the existing emergency rule authority, but they would have to follow up by using the regular rulemaking authority, which improves opportunity for public input and more legislative oversight.

For anyone policy-wonky enough to be wondering "why do they need to do all this? Don't departments usually have broad rule-making authority anyway?" The answer lies in another measure that was passed by the Walker administration earlier in this "special session." In that measure, the governor increased his own power over administrative rule-making, decreasing the power of the departments. These provisions on Medicaid -- if I am reading correctly -- are now giving back that power to the Department of Health Services in particular.

[UPDATE: I should also highlight the important part of Jon Peacock's information about using the rules to supersede Medicaid-related statute (laws). This part is not the way things normally work in Wisconsin, and is actually quite a sweeping new authority. Ordinarily the Constitution is the top authority, statutes cannot conflict with the Constitution, and rules cannot conflict with statutes or the Constitution. This bill -- soon to be law -- makes an exception for new emergency rules about Medicaid, allowing them to trump statute. This is still undemocratic, it's still huge, and it's not well understood.]

Oh, and the bill also includes some tricky maneuvering that will repeal the powers given to the DHS regarding Medicaid, as of 1/1/2015. Which marks the end of the Walker administration. If he lasts that long.

I have added links to the text of the bills on my WI Budget 2011: Medicaid page. Keep checking there for further links.

A few more things to point out.

If Walker is recalled, and a Democratic governor is elected, that new governor will be able to make appointments to head all the agencies. Which would mean a Democratic-friendly replacement for DHS's Dennis Smith.
Pledge to Recall Scott Walker -- complete with donation form!

The first opportunity to stem this rising tide of damage will be to recall the 8 eligible Republican Wisconsin State Senators.
Sign up to help with the Senatorial Recall
Donate to Recall the Republican 8

On April 5, we will have the opportunity at the ballot box to reverse the conservative majority in the Wisconsin Supreme Court. This will be immensely important as court challenges to various actions of the Walker administration wend their way to the high court. Vote JoAnne Kloppenburg!

Wear black today in solidarity (Thursday 3/10/2011). Contact your legislators. And come down to the Capitol if you can. There were protests around the clock last night.

Shame on the Walker administration. Shame.

Gathering in Support of WI Medicaid, with a Link Roundup

First things first: There's a gathering/rally/press event on Sunday 2/20, 1pm, to bring much-needed attention to the Medicaid implications of the Walker Budget Repair bill. The event is a few blocks from the Capitol Square in Madison at the Madison Senior Center, 330 West Mifflin (click the link for a Google Map.)

The entire press release is appended to the bottom of this post. JoyDad, Rose and I plan to be there, and hope to see many-many others there as well!

I'm also including here a list of some central background links on Medicaid and budget repair -- a one-stop shop, as it were.

For an excellent summary of the issue, see:
Budget repair bill gives Walker free hand to revamp, cut Medicaid programs
(The Capital Times, 2/14/2011)

For a glimpse of the potential court battle if this passes, see:
State attorney said Walker's Medicaid plan raised "potential constitutional issues" (The Capital Times, 2/15/2011)

[Update 2/21] To read more about the lack of awareness (both in Wisconsin and nationally) about the Medicaid issue, see:
Why Such Little Outcry Over Bill's Impact on Medicaid Programs? (The Capital Times, 2/20/2011)

For a summary analysis of the bill from the non-partisan Legislative Fiscal Bureau, see pages 8 & 9 of the following:
2/14/2011 LFB Memo on Budget Adjustment Legislation (.pdf)

Autism-related Press Releases
Autism Society of Wisconsin: Sweeping shift of authority for setting Medicaid policy threatens Medicaid programs, including autism services. (2/18/2011, .pdf)
Autism Society of Greater Madison: Budget Repair bill a threat to autism services
(2/18/2011)

A couple of contact-your-legislator Action Alerts:
From Access to Independence: Budget Repair Bill should not Limit the Power of People with Disabilities and their Families to Provide Input!
From DAWN News Service: Take Medicaid Out of the Budget Repair Bill

And the latest status of the bill, as of early-morning Sat. 2/19:
-- It has passed the Joint Finance Committee, with the addition of an amendment that "sunsets" the Medicaid-related process changes on Jan. 1, 2015 -- which is the end of Gov. Walker's current term, preventing any new administration from using the same ugly undemocratic process to change everything back. (It seems that the emergency only lasts as long as the Walker administration?)
-- The State Assembly did not vote on Friday, but adjourned till Tuesday.
-- The State Senate is currently unable to vote, since all the minority-party state senators have crossed state lines in protest of the lack of conversation/negotiation with Governor Walker and the incredibly rushed timeline for such controversial far-reaching changes. The Senate cannot vote, due to lack of quorum, until at least one of them returns. (Stay strong in your undisclosed location/s, Senators, and thank you for your courage!)

And finally, a Joy-story to tell.

Regular readers will remember that Joy re-started swimming lessons this January. After she had a wonderful first-lesson with a new teacher, that teacher left the swim school. We were reassigned to someone who didn't connect with Joy for the second-lesson. Then we had the chance to switch to yet a third teacher, who happens to be the same one with whom Joy had her first wonderful swimming-lesson experiences back in 2008.

Joy has now had two lessons with her third/original teacher. She is responding enthusiastically. I learned yesterday that the swim school has a new approach -- in addition to the report cards at the end of the session, they now give ribbons to mark when a swimmer accomplishes each skill in their level.

Joy got the following ribbon yesterday (it's really a neon-yellow with gold letters):

Note the Guppy logo! Woo hoo!

I look forward to being able to step back from blogging the politics of Governor Walker's disastrous budget, and tell more Joy-stories, but I'm also pretty much the only one I know who's blogging this part of the story, so it's a personal mission with me to keep the information flowing. I do plan to take a blogging Sabbath for an upcoming day here, take a deep breath, relax at least a little. But I hope to see folks at the event on Sunday afternoon, even if it's ice-and-snowing!

===================
Press Event to Support Wisconsin Medicaid and Raise the Voices of Working Families, Older Adults, People with Disabilities and Others with a Stake in Wisconsin’s Health

Sunday, February 20, 2011 1:00 pm
Madison Senior Center, 330 West Mifflin, Madison, Wisconsin (Google Map)

What: A press event to raise awareness of what’s at stake for recipients of Medicaid – including BadgerCare, SeniorCare, Family Care, children’s waivers and other vital programs in the Governor’s Budget Repair Bill.

When: Sunday, February 20, 2011 1:00pm

Where: Madison Senior Center, 330 West Mifflin, Madison, Wisconsin

Who: The Save BadgerCare Coalition and the Save Medicaid Coalition that includes a broad and diverse alliance of advocates for public health, disability rights, women’s health, the aging community, children’s health along with working individuals and families that depend on Medicaid including BadgerCare for their health, well-being and economic security.

Background: The Budget Repair Bill, even as amended by the Joint Finance Committee, threatens the future of Wisconsin ’s Medicaid programs that provide critical supports to more than 1.1 million people in the state. The bill gives sweeping authority to the Department of Health Services (DHS) to enact “emergency rules” that could significantly change the Medicaid programs and reduce BadgerCare eligibility for children, parents and uninsured adults; or reduce benefits in programs that serve older adults and persons with disabilities; and change co-pays and premiums without legislative oversight or any public input, which could have dire consequences for Wisconsin residents.

These significant changes to the administration of Wisconsin’s Medicaid programs are in danger of being overshadowed by the proposal’s other provisions which involve the rights of public employees. The public needs to be aware of the implications this bill will have for all those who rely on Medicaid; and that changes made today will have dire consequences for years to come that should not be underestimated.

========
P.S. TinyURL for this post is http://tinyurl.com/646k42q -- please tweet widely!

In the Capitol Rotunda. With a Bullhorn.

My protest sign and I got our democracy on at the Capitol last night, to spread the word about the Wisconsin budget-repair bill's assault on Medical Assistance.

Here's the text from the sign as held by JoyDad in the photo. It says:

Did you know? This bill gives unchecked power to gut Medicaid with zero public input to a Medicad-hater you've never heard of!*
Ask me more...
*DHS Secretary Dennis Smith

As outlined in an earlier post, Smith is the new secretary for the Wisconsin Department of Health Services, who has advocated that states should drop Medicaid entirely. The bill would give him sweeping powers to change Medicaid without public input.

I couldn't get down to the Capitol until after Joy went to bed last night. The schools are closed as the teachers take their consciences to the street, an action that JoyDad and I support even though it's been a challenge for Joy. The change in routine comes hard, not to mention having to deal with preoccupied parents, so she's had a short fuse and is really giving us a run for our money.

So my sign and I went downtown and the first thing that happened was, we got on national TV. The Ed Schultz show on MSNBC (9pm Central time) has been broadcasting live from Madison, doing a fantastic job of covering the protests and connecting the dots from Wisconsin to the corporate-funded effort to break public-employee unions nationwide. But he hasn't spoken about the Medical Assistance issue, so my sign and I went to see if we could be a presence. Alas, I landed on the wrong side of the crowd to be in the primary crowd-shots. But the people in the crowd where I landed let me through to the front line once they saw my sign -- "This is an important sign, let her through, we've got to let people know!" My big pink sign and I got a direct crowd-shot during the part of the show where Ed was talking with a state senator from Ohio, where the assault on the unions is now underway as well. JoyDad reports that the sign half-hid my face... but that's OK, I was holding it up on purpose so the camera could see.

I was on the right side of the stage to get a word with the producer of Schultz' show. I asked him if the Medicaid issue would be covered, and got a "no." Which I understand -- as I said, they're doing a great job of what they're doing. But perhaps Rachel Maddow's show might be willing to range more broadly...

ACTION STEP:
If you feel so moved, contact Rachel Maddow (Rachel@msnbc.com) and ask her to run a segment on the assault on Medical Assistance in Wisconsin. Send her a link to the story from the Capital Times at http://tinyurl.com/45qn78f
or send her to this blog!

I also got a chance to thank John Nichols of the Capital Times for their fine coverage of the issue -- but it needs to go national.

After the show, Ed himself came down to visit our part of the crowd. I got his autograph on my sign!

Then my newly-autographed sign and I went into the Capitol Rotunda, where I met a friend of mine. By this time it was well after 10, but the rotunda was full of fired-up protesters, led by students who took turns standing on a barrel in the center of the Rotunda to lead chants and keep the energy going. My friend offered me a ride home (since I'd come on the bus, which is also under attack in this bill), so I was free to stay and talk to people.

The sign, word-overload and all, did a great job bringing folks to talk to me, who had no idea about the Medicaid issues. I was able to tell the story to a fellow who happened to be in a major education-related organization, who promised to spread the word widely to educators in this state who don't yet know.

Then a young woman popped out of the crowd to see my sign and ask questions. When she heard my explanation, she was horrified. And then she said, "Can you tell them (gesturing to the crowd) about this?" Before I knew it, I was being led to the barrel in the center of the Rotunda and handed the bullhorn.

The crowd was amazing. They had a mutually agreed-upon signal for "quiet down, someone needs to talk," so the two-raised-fingers peace sign popped up on hundreds of hands and they stopped the drums and jumping to hear me speak. And I told them, in short phrases, what the bill says about Medicaid. What the bill does to public participation on future changes to Medicaid. Who Dennis Smith is, and why it's so dangerous to give him this power. Where to go for more information.

Hundreds, maybe a thousand? activists at the Capitol now know that the assault on Medicaid must be removed from this bill.

Keep spreading the word, everyone! Keep calling & e-mailing your legislators, if you live in Wisconsin. Contact the White House, tell the president that we need his support here in Wisconsin. Come to the Capitol if you can. This is too important to stop now!

You can also "like" Elvis Sightings on Facebook in the right-hand sidebar to follow new posts. Only a part of my writing has been political, but right now this is where I get to spread the word.

(To my regular readers: JoyMama, standing on a barrel, in the Capitol Rotunda, at 11pm, with a bullhorn. Who would have thought?)

P.S. TinyURL for this post is http://tinyurl.com/5udd5s6 -- please tweet widely.

Wisconsin Attack on Medical Assistance (and Democracy)

For years, advocates in Wisconsin have been working to make life better -- in some cases, make life possible -- for people with disabilities.

The process has been slow. It has taken years to create the programs and put the funding in place to allow people with disabilities to live a meaningful life in their communities, in their homes, with the healthcare support they need. Bit by bit, but with much further to go, the argument has moved forward: if you don't want to go back to the bad old days of warehousing people in very expensive institutions where lives were unbelievably difficult and generally much shorter, the public needs to step up and provide support.

This successful argument has won us the MA waiver that provides intensive therapy for children with autism.
We've won funding for health care.
For respite care.
For the home modifications that keep people safe and mobile.
For the supports that allow adults with disabilities to live in the community.

On Friday February 11, Governor Scott Walker proposed a so-called "budget repair" bill that will allow him and his appointees to restructure and slash Medical Assistance programs in Wisconsin. If this bill passes, the future slashing will take place...

Without public notice. Without public input.

The budget bill was released on Friday. A public hearing was announced Monday noon to take place on Tuesday at 10am, less than 24 hours notice.

They want the legislature to rubber-stamp this bill with a vote THIS WEEK. (And they claim they have the votes to do it.)

Very few people even know about the provisions of the bill impacting Medical Assistance.

Just so you can see I'm not making this up, here are some links to news articles...
Walker budget proposal would impact how health care works in state
Budget repair bill gives Walker free hand to revamp, cut Medicaid programs
State attorney said Walker's Medicaid plan raised "potential constitutional issues"

The bill also eliminates outright the agency that coordinates Joy's respite care services, the Wisconsin Quality Home Care Commission. (The cuts in the respite funding itself will surely come later. Without public input or notice.)

Why don't people know about this?

Two major reasons:
1) The bill is loaded with outrages. The one that has been in the headlines, that people know most about, is the proposal to strip most collective-bargaining power from public employees, so that (for starters) the governor can implement a massive cut in take-home pay via drastically-increased employee benefit contributions. [For JoyDad and myself, the loss of income amounts to half our mortgage payment every month, the equivalent of a 150% income-tax hike.] The union-busting, an outrage in and of itself, also sets the stage for immense cuts in public education...

2) The timeline is appallingly, undemocratically short. The advocacy groups have not had time even to properly analyze the Medical Assistance provisions in the bill, let alone inform the public to get to the hearing and tell their stories. The hearing, by the way, is technically still underway as I write, though they adjourned temporarily at 3am and cut off the ability for further people to sign up to speak. People are sleeping-over in the Capitol rotunda in Madison tonight. I submitted my written testimony yesterday morning, but could not stay the whole day awaiting my turn to speak.

As I said in a letter to the editor that was published yesterday, nobody is arguing that there's not a serious budget issue in our state. Some pain will have to be shared. Tax increases will have to be a part of this puzzle.

Governor Walker's approach so far, however, has been to hand over millions of dollars in corporate tax giveaways during a special-session in January this year. In other words, making the hole bigger, so that the coming cuts will be even greater.

And the mechanism that allows unfettered cuts to Medical Assistance, without so much as public notice let alone public input, is moving through practically un-noticed.

Spread the word. Call the state legislators, or e-mail them if their phone mailboxes are still jammed full like they were yesterday! Write to your local paper. Hit the streets if you're anywhere near a rally. The Capitol will be alive with protest today, what with the Madison schools closed as the teachers go out to advocate for Wisconsin public education -- JoyDad and I support them wholeheartedly.

But if the MA issue continues to fly under the radar, the protests won't get that part of the bill so much as tweaked.

Please help!

==========
P.S. A little bit of wonky sausage-making detail for those who are interested in such things! According to the balance of powers in the State of Wisconsin, MA changes have had to go through a legislative process, either through direct legislation or through administrative rule-making. Both approaches require public hearings.

The budget proposal changes the requirements for the process. Changes would be able to be made via "emergency rule," regulations which could be created by the Walker-appointees in the Department of Health Services. Ordinarily, hearings must be held on emergency rules, and then after a specified period of time, the emergency rules must be converted into final rules, with another round of public hearing. However, according to the budget proposal, the new "emergency rules" slashing MA could be passed without hearing by the Joint Finance Committee, simply by the committee declining to take them up. The JFC is currently 8 Republicans, 4 Democrats. The committee WILL DECLINE to take up any proposed emergency rules that result in MA cuts. So the emergency rules will simply pass into effect in 14 days. No public notice, no public input. The bill also waives the requirement for the emergency rules to be revisited and converted into final rules. No chance for public input and changes there either.

P.P.S. As with any post here on Elvis Sightings, I am expressing my own personal opinions, which are not to be construed as representative of any organizations or associations to which I may belong.

P.P.P.S. TinyURL for this post is http://tinyurl.com/67awwje -- please tweet widely.

The Power of Words

As I think I've mentioned before (and you may have noticed!), I love to play with words. There are so many of them, and they're flexible and resilient at the same time, and the possibilities for interesting combinations are practically endless!

They also wield incredible power.

In 1987, Mayer Shevin wrote the following poem, called "The Language of Us and Them," reflecting on how people without disabilities speak about themselves and about people with disabilities.

We like things.
      They fixate on objects.
We try to make friends.
      They display attention-seeking behaviors.
We take a break.
      They display off-task behavior.
We stand up for ourselves.
      They are non-compliant.
We have hobbies.
      They self-stim.
We choose our friends wisely.
      They display poor peer socialization.
We persevere.
      They perseverate.
We love people.
      They have dependencies on people.
We go for walks.
      They run away.
We insist.
      They tantrum.
We change our minds.
      They are disoriented and have short attention spans.
We are talented.
      They have splinter skills.
We are human.
      They are.......?

You can read about the heartbreaking inspiration for this poem on the Autism Society of Middle Tennessee's web site.

While the poem wasn't originally about autism, it fits strikingly well with how "we" define "them" when it comes to the autism spectrum. I first heard these words in the autism context back in March, at the start of Paula Kluth's workshop at the Autism Society of Wisconsin (ASW) conference. When I walked in a little late, there was a video playing on the big screen, in which the words of the poem were being presented in the context of autism, with music and images and additional text. At the time I didn't even catch the name of the DVD, but I later learned that it was called "The Power of Words: How We Talk About People With Autism Spectrum Disorders Matters!" The creator is Judy Endow, MSW, autism consultant and self-advocate.

It was just announced on the ASW online mailing list that the video has been selected to receive the 2010 Autism Society Media Excellence award, to be presented at the July national conference of the Autism Society of America in Dallas. Congratulations to Judy! (Though there'd be no reason for her to remember me, I've heard her speak and met her briefly. Her words have taught me much -- and made me think.)

The DVD is sold online at the Autism Aspergers Publishing Company.

Here's one more text-excerpt from "The Power of Words" taken from the publishing company web site above:

One time I started making a turkey sandwich.
Then I remembered
I had a banana that needed to be used up.

So I decided to make
a peanut butter and banana sandwich
instead.

The group home worker
looked at the new person
she was training and said,

“Judy must have forgotten
that she wanted a turkey sandwich.
They have short attention spans, you know.”

Do you recognize this kind of language, in your own speech (guilty here, probably more often than I know) or being used by others to describe your child or being used to describe you?

I love words. We're all responsible for being aware of their power, and using them in ways that em-power.

Conference Report, Part 3: Eric Courchesne

The third and final installment from the Autism Society of Wisconsin conference is the Saturday afternoon keynote by Eric Courchesne, director of the UCSD Autism Center of Excellence. His talk was called "The Neural Origins of Autism: Evidence of Prenatal and Early Postnatal Brain Growth Abnormalities."

[Note - I'll be calling him by his first name, as I did with Paula Kluth and Temple Grandin, though in each case the more formal choice would be the title "Dr."]

In contrast to Temple Grandin's wide-ranging themes, Eric's presentation built a thesis. He started by referring to a 2009 report from the Information Centre of the UK’s National Health Service that found an ASD rate of 1 in 100 among adults in England, using modern diagnostic standards. This converges with the 1 in 110 rate for children in the US as published by the CDC this past December... in other words, he was taking the stance that the autism "epidemic" has much more to do with diagnostic changes than with a true rise in the condition. (The England study has been somewhat controversial, and Eric was careful to caution that it needs to be replicated before we can give it too much weight.) Come to think of it, Temple hinted at a similar position in her presentation: "Geeks and nerds have always been here... Who do you think made the first stone spear? It wasn't all the yakety-yaks around the campfire!"

Eric went on to point out that until recently, much of the brain-scan research in autism has been done with adults. But if you want brain research to illuminate the "why," you need to start much earlier, back to the age at which atuism first begins to be apparent. So he and his wife, fellow researcher Karen Pierce, have been working on brain studies with little tykes.

One set of results focuses on brain size. It's well-established that people with ASD have unusually large brain size. Courchesne et al (2003) looked children with autism or PDD-NOS and traced their head circumference (HC) records back to infancy. The findings: birth HC of the infants with ASD was smaller than the norm, but shot up to a mean at the 84th percentile by 6-14 months. The children with autism had a greater increase in HC than the ones with PDD-NOS. [This rings true for our Joy, by the way. Her head was at the 70th percentile shortly after birth, 95th percentile by six months, above the 97th by 9 months, and has never gone below that figure since. Rose had a sizable head too, 90th percentile at 12 months, but back to the 82nd percentile by 2 years of age.] Anyway, Eric listed 7 other studies in support of this finding, starting with Dementieva et al 2005.

The next work he described involved doing sleep-MRIs on one-year-olds. To get the right group of little ones to scan, Eric and Karen have set up a network of primary care physicians who do a screener at age 12 months to identify children who show early signs of ASD. Those identified as at-risk then become potential research participants. This network & screening impresses me as a two-in-one coup, by the way -- not only does it serve the research, but it gets the kids screened! I've learned via LEND that there is surprising hesitation in the pediatric community when it comes to implementing standardized developmental screening, whether for autism or just in general.

Anyway. Not only are these MRIs confirming large brain size in children with ASDs (particularly frontal & temporal lobes) but are also showing that autistic-tyke brains are responding differently to normal speech, with activation on the "wrong" side of the brain.

So where are these brain overgrowths coming from? Is it more brain-cells, or something else? Cadaver research on small children can be a hard thing to think about because there's always a tragedy underlying, but generous research donations by bereaved families has allowed some study that actually counts brain cells -- with the astonishing result that the brains of children with ASD had an average of 55% abnormal increase in the actual number of cells!

AND. Eric drove this home hard. Almost all brain cells are generated PRE-NATALLY, second & third trimester. The overgrowth in numbers of brain cells cannot be caused by vaccines.

So why don't symptoms show till later? He showed a fascinating slide illustrating human frontal cortex development. Even though newborns have all their brain cells, those cells are small and have few connections. But between the ages of 6 months and two years, the cells themselves grow and circuit formation goes wild. At that point, the difference in number of brain cells and how they connect begins to really matter.

Eric's lab is currently studying the layers of the cerebral cortex, a process that he expects will lead to identification of genes that are implicated in layering defects. He spoke of his hope that within 6 or 7 years, that the understanding of the brain-basis of autism will jump by leaps and bounds. As he made this prediction, he became choked with emotion... "I have tremendous hope," he said.

When Eric talks about the importance of brain-based autism studies, he also speaks very strongly about the massive waste of research dollars that have been poured into the generally-discredited vaccine causality hypothesis. This infuriates him. And it's not just a casual opinion with him. It's very personal. You see, as he climbed the steps to the stage, he had to support himself with his arms because his legs don't work quite right. He had polio when he was four years old, in the last epidemic wave before polio was essentially wiped out.

By vaccines.

He got a standing ovation at the end of his presentation.

----------
Note: sorry that my referencing of particular papers fell off after the first bit of the presentation. I thought I took better notes than that, but apparently not. Please be assured, though, that every one of the findings was backed by peer-reviewed, published articles, and that Eric took great care to mention the extent to which his work has been replicated. Unlike, and he made this point very clearly, the work of a certain Andrew Wakefield, recently retracted by the Lancet.
----------

Thus endeth my conference reporting. I hope you can see why it seemed important to me to share all three of these presentations! Thank you for hanging with me. I think that as LEND winds down, we'll be returning to our usual Joy-based programming here on Elvis Sightings.

Conference Report, Part 2: Temple Grandin

Before the Autism Society of Wisconsin conference slips entirely out of sight in the rear-view mirror, I want to report (as promised) on the second keynote, Temple Grandin. [Note - I'll be calling her by her first name, as I did with Paula Kluth and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Temple Grandin's book Thinking in Pictures was the first book I read after Joy's autism diagnosis that presented a perspective from within the autism spectrum. Her account sparked some of my first searching questions about the nature of autism (such as, does everyone with autism think in pictures?) I was so pleased to get a chance to shake her hand at this conference, and get her autograph on a copy of The Way I See It, which I thought I might read on the Kansas car ride, but it keeps slipping down the stack as I take one other books with deadlines like library due dates...

The talk was called An Inside View of Autism and ranged across a variety of topics. As I look at my notes, they're rather a collection of insights rather than an arc of a lecture-long argument -- but it was engaging all the way through. Temple is an accomplished lecturer, an achievement that is reportedly the work of many years. A friend of mine who was also at the conference had heard her speak over a decade ago and compared the two: at the earlier talk, she had relied on self-talk techniques such as "OK, I need to tell a joke here so you won't all get bored." Over the years, she has taught herself to weave the jokes in seamlessly and to move about the stage as a comfortable speaker often does.

Here are some nuggets from the presentation:

Remember how I mentioned in my GFCF post that Temple Grandin was a proponent of "the diet"? Well, she is, but in a more nuanced way than the folks who claim a 90% success rate. Her take: "Out of ten kids with autism, it might work for one or two." But for the people for whom it works, like herself, the improvement is a powerful change for the better. (She also mentioned Omega 3s, and cutting sugar and carbs as well as going GFCF).

My skeptical heart rejoiced to hear her lay into the "rubbish on the Internet"! She directed people to PubMed, the database search tool from the National Library of Medicine that searches published articles in biomedical sciences. (Librarian-ish note -- unless you're affiliated with a university, you'll mostly be able to get just citations and summaries of the articles. But still.)

She had high praise for the Temple Grandin HBO movie with Claire Danes. She said that the movie succeeds in portraying how her visual thinking works. As for the acting, "Claire Danes became me in a way that was really weird!" (I gotta see this movie. I usually don't miss having HBO at home, but this is one exception!)

Temple had an interesting take on behavior and manners. She has a hearty appreciation for how manners were taught when she grew up in the 1950s. It makes sense to me that a well-defined system of rules would be appealing to a mind of a certain structure! However, I've recently seen this used negatively in comments relating to a bloggy dust-up about how people see "us" (kids on the spectrum and their parents), as in: if Temple Grandin thinks that kids with autism should be taught 1950s manners, then it must be the parents' fault that they're acting out in public. Which doesn't sit well with me, having just been party to a clean-up of fist-flung jello. It's not that easy. And I'm not sure that Temple was saying that it was.

One final quote-nugget, which Temple offered in response to a question regarding trying to get appropriate services from a school district in a difficult situation. "Your project is for your son to be successful." The corollary was that being right in fighting with the school was less important than being a clever negotiator, swallowing pride when prudent to get to a place that would better support the child's success.

Our project is for our child to be successful.

Yes.

Conference Report, Part 1: Paula Kluth

I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.

But I promised some conference-reportage!

One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.

One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!

Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...

• someone drags me away?
  
• someone enforces an immediate negative consequence?
  
• someone yells at me enough?

So why is this the kind of strategy that so often comes into play for students with disabilities? when what really helps the conference attendees in their own "behavior problems" is more along the lines of: have a snack; change of venue; exercise; walk away; etc?

Really, who among us wants someone to come along and try to "change our behavior" anyway??

But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"

So, what does seem to help? In very broad strokes:

• Being surrounded by people who care
  
• having meaningful social relationships
  
• being in a comfortable setting
  
• having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")

Another nugget from the day that I found very thought-provoking was reflection on "shepherds," i.e. how very much adult-presence and "proximal support" students with autism often have. How much of the hovering and correction -- y'know, those things we do because it's good for them, right? -- is necessary and how much not? Do we expect students with disabilities to be "on task" for more of the time than students without disabilities?

Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!

For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.

Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:

Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!

For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.

Back from a Conference

Didja miss me?

I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.

JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?

When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.

What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!

The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:

• Paula Kluth, who gave a daylong workshop called The Problem With Behavior Problems
  
• Temple Grandin (I felt like such a fan-girl... I got to meet her! She autographed a book for me! Swoon!)
  
• Eric Courchesne, neurological researcher, on the state of the art in autism brain research and implications for what does (and does not) cause autism

Stay tuned!

Wisconsin Autism Insurance Rule Published

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
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Apologies in advance to my regular readers for yet another policy-wonk, Wisconsin-specific post.

But, this is information that needs to get out there. I'll do a very sketchy first pass at it, and at a later date I will link to the consumer fact-sheets that the Autism Society of Wisconsin (ASW) and other organizations are now feverishly developing.

[NOTE: If you have any specific questions that you would like the factsheet/FAQs to address, please let me know in the comments. I have an "in" with one of the movers-and-shakers who is working on the FAQs, and I've been asked to pass your questions along!]

So, here's the deal. The legislation that passed in the Wisconsin State Budget in June 2009, requiring insurers to cover autism treatment, was just the first step. The second step is that the Office of the Commissioner of Insurance (OCI) for the state had to hammer out the corresponding changes to the insurance rules, on a short timeline. To make this happen, the OCI convened an Autism Working Group, a group of insurance company reps, legislators, advocates, parents, and providers who have been working like crazy since July to define terms for the document that spells out what insurance companies do and don't need to do.

That document is now published, at http://www.oci.wi.gov/rules/0336em09.pdf (note that it opens a PDF document).

The press release announcing the document is at http://www.oci.wi.gov/pressrel/1009autism.htm.

The document is what is known as an "emergency rule." This means that, while it goes into effect immediately due to time constraints, and in this case is good for one year, an ongoing process has yet to take place that involves hearings (at the OCI and likely also before the Joint Committee for Review of Administrative Rules) and a legislative process and further opportunities to monkey with the document before it becomes permanently enshrined in the rules.

However, until that long drawn-out administrative rule finalization process happens, the emergency rule applies, for at least a year.

The emergency rule takes effect November 1, and will start affecting actual insurance coverage whenever the insurer's next new plan-year begins after that date. For many insurers, that new plan-year will begin January 1, 2010 -- so that is when coverage would actually start.

Here are a few highlights (note that this is my own reading, backed by additional conversations with people involved in the process -- but I am no expert. The upcoming FAQ from the ASW & friends will be much more authoritative):

• Wisconsin's Medicaid Waiver program (which is how Joy currently gets her treatment) was the basis from which the Autism Working Group began their deliberations -- the insurance coverage is meant to be reasonably similar on the whole to what people are getting through the waiver right now, though there are plenty of differences, both good and not-so-good.
  
  
• The group did not spell out which specific treatments have to be covered, though behavioral principles are a necessary component. Instead, they hammered out a set of requirements as to what level of published evidence qualifies a treatment to be "evidence-based" for purposes of the rule. The introduction to the document states that this was done such that ongoing research can be taken into account without needing to change the rule. My understanding from outside conversations is that the evidence-requirements were crafted with the intent to include the treatments that are being covered by the waiver program right now.
  
  
• Insurers will be required to cover up to FOUR years of intensive-level autism treatment (to the tune of $50,000 per year as stated in the legislation), as opposed to the up-to-three years covered by the waiver program. However, any intensive-level service that has already happened when insurance coverage starts, whether under the waiver or out-of-pocket, counts toward those four years.
  
  
• (update to original post) As stated in the legislation, insurers are also required to cover what they're calling "post-intensive" treatment to the tune of $25,000 per year. This is autism-related treatment for people of any age. Since I am not as familiar with post-intensive services under the waiver, I can't make a good comparison -- but I think that the post-intensive waiver coverage is somehow time-limited (certain ages? certain number of years?) and the post-intensive insurance coverage, as I understand it, is not.
  
  
• Those who have been reading Elvis Sightings for a while may remember my ranting and advocacy around the waiver program's [in-my-view-unreasonable] insistence on having all therapy take place in the home (as opposed to including other natural settings). Good news -- the language in the new rule only requires a majority of the treatment to take place when a parent is present, and that it should be "provided in an environment most conducive to achieving the goals of the insured’s treatment plan." Can you say, "Joy's awesome daycare at Lynda's place"? Sure, I knew you could! Woo hoo!
  
  
• Another change from the waiver program, this one not so fortunate: under this rule, insurers are not required to cover therapists' travel-time. I do not know how this will work out in practice; some service-provider agencies may choose to "eat" this cost in order to continue to be able to hire therapists...
  
  
• While there is not a list of specifically included therapies, there is a specific list of exclusions. Among the therapies NOT covered: acupuncture, hippotherapy, auditory integration therapy, chelation, cranial sacral therapy, hyperbaric oxygen therapy. (See the rule document for a complete list.)

Well, that's a few highlights from my perspective.

There are many questions yet to be answered, and most caseworkers and providers and insurers haven't got these answers just yet... will my particular insurer cover my particular therapy provider? How does my Katie Beckett (non-waiver) medical assistance coverage play in? Does our family still keep our county caseworker if the waiver was where that relationship started? What about co-pays & deductibles? Et cetera.

We just don't know yet. But the answers will have to be worked out soon.

Joy's particular service provider ("Agency 2") has recommended that current waiver-based clients with insurance contact their insurers. Our plan is to make that contact and ask the insurer the question: how can we proceed in order to avoid any kind of gap in treatment coverage?

Stay tuned.

(P.S. My thanks to JoyDad for helping me sort out the administrative rule-making process!)