Thursday, April 28, 2011

Autism Insurance: They Were For It! (before their party/ALEC was against it)

I've continued thick and fast with the advocacy here in Wisconsin. So much going on, with such blinding speed. Is it possible that it's only been two-and-a-half months since this assault started for real, with the "Attack on Wisconsin Families" bill (which its proponents liked to call the "Budget Repair Bill" -- a moniker that would have been laughable if it weren't so serious.)

I can't even address the unbelievable sequence of events in the WI Supreme Court race -- you couldn't make this stuff up if you tried. Instead, let's go for some more advocacy, OK?

As I wrote in a previous post, Now They're Coming for her Autism Insurance, there is some ugly legislation waiting in the wings to be introduced at the Capitol. Two bills, written by ALEC under the names of Sen. Leah Vukmir (R-Wauwatosa) and Rep. John Nygren (R-Marinette), are poised to destroy not only the autism insurance mandate that we worked so long and hard to achieve, but also every other insurance mandate in the state of Wisconsin. A very similar bill has passed both chambers of the Arizona legislature, and lacks only Gov. Brewer's signature to spell disaster for their autism insurance mandate [UPDATE!] has been vetoed by Gov. Brewer! Woohoo! (But we can't count on any such veto happening in Wisconsin...)

The Republican party in Wisconsin has been marching in lock-step on ALEC ideas, from corporate handouts (ongoing) to the weakening of consumer legal protections (January) to the evisceration of collective bargaining (currently tied up in the courts).

Funny thing about autism insurance, though.

There are more than a couple of Wisconsin GOP legislators -- still serving today -- who were FOR autism insurance before ALEC and the GOP collaborated to ride the Tea Party wave AGAINST insurance mandates!

Here are the currently-serving Republican state representatives who co-sponsored autism insurance legislation in the Assembly in both 2007 and 2009:
Rep. Dean Kaufert (R - Neenah)
Rep. Alvin Ott (R - Forest Junction)

The autism insurance bills never came to a standalone vote in the Assembly. In the 2007 version they ended up voting instead on an altogether-different (and unacceptable) substitute amendment; the 2009 version was then incorporated into budget legislation so it wasn't a separate vote. So we don't have a voting record on autism insurance in the Assembly. We do know, however, that the following currently-serving Republican state senators voted for autism insurance on 2007 SB178:
Sen. Robert Cowles (R - Green Bay)
Sen. Alberta Darling (R - River Hills)
Sen. Michael Ellis (R - Neenah)
Sen. Sheila Harsdorf (R - River Falls)
Sen. Dan Kapanke (R – La Crosse)
Sen. Luther Olsen (R – Ripon)

That makes a total of eight currently-serving Republican Wisconsin state legislators who took tangible recorded legislative action in favor of autism insurance.

Before their party / ALEC wrote the (not-yet-introduced) legislation that would kill it.

Then there are the Democrats on the record -- voting or co-sponsoring -- in support of autism insurance as well.

Co-Sponsoring Democratic Senators:
Sen. Spencer Coggs (D - Milwaukee)
Sen. Jon Erpenbach (D – Middleton)
Sen. Dave Hansen (D - Green Bay)
Sen. Robert Jauch (D - Poplar)
Sen. Julie Lassa (D - Stevens Point)
Sen. Mark Miller (D - Monona)
Sen. Fred Risser (D – Madison)
Sen. Lena Taylor (D - Milwaukee)
Sen. Kathleen Vinehout (D - Alma)

Additional Aye-Voting Democratic Senators:
Sen. Tim Carpenter (D - Milwaukee)
Sen. Robert Wirch (D - Pleasant Prairie)

Co-Sponsoring Democratic Assembly Representatives
Rep. Therese Berceau (D – Madison)
Rep. David Cullen (D - Milwaukee)
Rep. Jason Fields (D - Milwaukee)
Rep. Tamara Grigsby (D - Milwaukee)
Rep. Gary Hebl (D – Sun Prairie)
Rep. Andy Jorgensen (D - Fort Atkinson)
Rep. Margaret "Peggy" Krusick (D - Milwaukee)
Rep. Cory Mason (D - Racine)
Rep. Joe Parisi (D – Madison) -- just elected to Dane County Executive!
Rep. Mark Pocan (D – Madison)
Rep. Sondy Pope-Roberts (D – Middleton)
Rep. Jon Richards (D - Milwaukee)
Rep. Donna Seidel (D - Wausau)
Rep. Jennifer Shilling (D - La Crosse)
Rep. Christine Sinicki (D - Milwaukee)
Rep. John Steinbrink (D - Pleasant Prairie)
Rep. Robert Turner (D - Racine)
Rep. Leon Young (D - Milwaukee)

If you live in the district of any of the aforementioned legislators, here's how you can help.

Contact your legislator by phone, e-mail, or postal mail -- you can look them up online. Consider postal mail if you have time and can spare the stamp! They get less of that than they do phone/e-mail these days, so the impact may be greater. There's also plenty of time for a letter to arrive and be processed, since these bills may not be introduced until the legislature convenes in the fall (but if we put legislators on notice NOW, maybe we can even keep the measures from being introduced?)

Tell them these things:

1) Thank them for their past vote / co-sponsorship for autism insurance.

2) Tell them that autism insurance not only helps people who are able to access it, but also saves the state on Medicaid expenses! (Your personal autism-insurance story goes here if you have one.)

3) Ask them to be consistent with their previous stance by joining you in opposing LBR0373 and LRB1529, which would undermine all of Wisconsin's insurance mandates (including autism insurance)

4) Make sure to include your full street address with your signature.
I've already made a personal visit to Sen. Darling's office, with Joy at my side, to address this issue. Since I'm not a constituent of hers, I didn't get a direct visit with the senator, but I did make an appointment and had a reasonably good conversation with a staff member.

More opportunities to get your lobby on!

Monday, April 25, 2011

Autism Insurance = Medicaid Savings: Pass it On!

Autism insurance for Joy's intensive autism therapy saved the state of Wisconsin $30,000 or more in Medicaid dollars in 2010.

In other news, the Wisconsin Department of Health Services is looking for ways to save money on Medicaid.

Yet two ALEC-inspired, not-yet-introduced bills (LRB0373 & LRB1529) would neutralize not only Wisconsin's autism insurance requirement, but also all the rest of our hard-won insurance mandates.

Wisconsinites: Help me connect the dots for the powers-that-be in our state!

There are two online ways to tell the Wisconsin Department of Health Services (DHS) about this. I have done both -- feel free to either do the same, or choose one or the other.

Option One: DHS has a "Virtual Town Hall Meeting" online survey, where you can submit suggestions for how to save money for Medicaid in Wisconsin. (This one does require your name and ZIP, and asks for full contact info as well).

Option Two: Wisconsin's Council for Children with Long Term Care Needs is collecting Medicaid-related suggestions to convey to DHS, and also to post on the Family Voices of Wisconsin web site. This one is child/youth focused, and does ask for an age-range of your child, and also asks your county but does not ask for personally-identifying information.

Here's what I told them both:

Due to Wisconsin's autism insurance requirement, passed in 2009, the state saved at least $30,000 in Medicaid expenses for my daughter in 2010. In 2008 and 2009, she received intensive autism therapies via the Children's Long Term Support Medicaid waiver. In 2010, our insurance paid in full for 8 months of intensive therapy that would otherwise have been borne by CLTS.

Unfortunately, two bills that have been drafted but not yet introduced(LRB0373 and LRB1529) would neutralize not only the autism insurance requirement but all Wisconsin's other insurance mandates as well. DHS should oppose this proposed legislation, as it would shift significant costs back to the state's Medical Assistance programs.

I also included a few other suggestions from a document called Survival Coalition Ideas for the DHS Town Hall Meetings (.pdf).

Anyone in Wisconsin can submit suggestions. Bonus points if you have a Wisconsin autism-insurance story of your own, and an even bigger bonus if you send your autism-insurance story to me as well ( or post it in the comments! If you send it to me via e-mail, I'll be in touch about how you would or would not like me to share your story further.

Our stories are SO important!

Sunday, April 24, 2011

Easter Sunday


May endure for the night

But joy cometh in the morning.

Christ is risen! Alleluia!

Saturday, April 16, 2011


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.

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


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.


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!

Saturday, April 9, 2011

Girls at the Pool

She had noticed my daughter.

I mean, how could you not? Joy is the happiest kid in the waiting room, practically pogo-sticking up and down in her little swimsuit and squealing. The sheer delight continues through her one-on-one lesson, as she cavorts with her smiling teacher. Sometimes she gives the teacher a run for her money, too, lunging for the lovely stimmy pool dividers. At least she doesn't need an extra staffer to keep her from taking off at a run during jump-in practice like she did when we first started the swimming thing! But it's also during jump-ins that one notices the tracking-device around Joy's ankle.

I had noticed her daughter too.

One of the older students, doing racing-dives and more complex strokes (butterfly!) with a bunch of classmates in the long lane at the other side of the pool. Young teen, maybe, with a not-yet-a-woman-but-getting-there kind of shape. Obviously very fond of her male teacher, hanging on him noticeably -- what would have been cute in a first-grader was beginning to shade into the inappropriate for a 13-ish-year-old who didn't quite seem to have figured out the new boundaries. He was patient with her.

Yesterday in the pool observation area, another mother was sitting near me, obviously watching Joy and her teacher, the closest people in the pool. Joy's teacher nudged her to poolside, and Joy climbed out all on her own, moves that her teacher had had to help with just a couple weeks ago. Great concentration and effort.

"Hardest-working kid in the pool," I commented proudly to the other mom.

"Oh, is that your daughter?" she responded, and proceeded to amply reward my compliment-fishing.

And then she said, "Autism?"

I nodded. "Autism, and a few things more."

"My daughter's on the spectrum too. PDD-NOS. That's her in the far lane, green suit, just diving in."

Yes, that girl.

That girl had never had the one-on-one lessons that Joy has now, but her mom said that watching Joy had some very familiar feel to it. How her daughter reacted differently to the water than the other (much younger back then) kids in her class. How the sensory issues made such a difference, and then in her daughter's case the emotional part was huge too.

And now she's doing the butterfly and looking just like the other kids in class, with the slight exception of hanging just a smidge too much on her teacher. She won't likely swim on a competitive level, said mom, but she loves it and it's great exercise.

"It gets better. It really does!" she said.

I can see it from here. Joy is doing so well, we can track her progress at the pool by the week...

And yesterday she got another achievement-ribbon. I'll use the image of the one she got in February to illustrate, but the new one is like unto it -- a Level 2 / Guppy ribbon, in the "Becoming More Independent" category. Her new achievement is "Swim 3-5 Feet." Unassisted, between 2 platforms, no feet on the pool bottom.

I look forward to the day Joy can do the butterfly the full length of the pool. And if she hangs a little too much on her teacher, well, she won't be the only awesome achiever who's ever done so.

Saturday, April 2, 2011

Denials and Affirmations

The amazing story in Wisconsin continues apace.

You would think that complying with a direct temporary-restraining-order (TRO) from a circuit court judge would be a no-brainer for the governor and legislators. Accept the judge's temporary order, play the case out, then appeal if you think the outcome was unjust.

But in Wisconsin, we've apparently got no-brainers in charge of both the executive and legislative branches.

At issue is Act 10, THE BILL, the supposedly non-fiscal version of the so-called Budget Repair bill (!!). This is the legislation that essentially kills collective bargaining for public employees in Wisconsin, gives the Medicaid-hostile Secretary of DHS unprecedented new powers, eliminates the organization that does payroll and beyond for Joy's respite-care provider, whacks the JoyParents' paychecks, and more.

I'm not even going to try to recap the torturous route that Act 10 has taken over these past weeks, but we've gone rollercoasting from celebration to mouths-hanging-open at the lawlessness of the Walker administration, and that cycle has been repeating. Temporary injunctions! Defying the courts! Slapdowns in court proceedings! More defiance! More slapdown!

As of this writing, we're on a celebration cycle: right now, Act 10 is NOT law and NOT to be implemented. The judge ruled yesterday that the TRO remains in effect until late May, when the legislative session is over and the Walker cabal can no longer declare immunity and have to haul their sorry selves into her courtroom so she can actually finish the case and make a real ruling. (Of course, if they waive immunity like their Democratic counterparts did, they could get this all over much more quickly. Likewise, they could just go back and pass the bill over again, but they're afraid they don't have the votes and they're worried about the protestors!) Expect shenanigans, expect appeals. And vote JoAnne Kloppenburg for Wisconsin Supreme Court April 5, because the state supreme court is where all this is going to wind up.

One thing it's hard to deny is that we're winning on the recall front. Less than halfway through the 60-day signature collecting window, the recall campaign has filed sufficient signatures to recall Sen. Dan Kapanke (R - LaCrosse). His recall election will be the first to happen -- more will reach their signature goals after a flood of signatures is collected adjacent to polling places on April 5. The recall organizers have announced that they're confident that there will be elections in six of the eight efforts to recall Republican state senators in Wisconsin -- which they wouldn't be saying publicly if they weren't very sure. SIX! And we only need to flip three of those districts to regain control of the state senate!

There's an inspirational recall-campaign ad that I'd like to share with you, that captures some of the passion and determination driving this movement. Well worth a minute of your time to watch:

Whether you're in Wisconsin or not, if you would like to affirm your support for workers' rights and beyond, you might be interested to know that there are events all over the country on April 4 and the week to come. Why April 4?
Martin Luther King Jr. was assassinated on April 4, 1968, in Memphis, Tenn., where he was standing with sanitation workers demanding their dream of a better life.
There are over 600 events scheduled across the country in the upcoming week in conjunction with this commemoration. Find one near you.

In the midst of all this, the JoyFamily received some powerful affirmations this week.

It dates back to the church retreat in February, the one at which I coordinated a craft-project to make Medicaid-related protest signs.

We had to leave early before the Sunday morning worship so we could take the signs to a Medicaid-related press conference. So we missed the conclusion of an activity that had been going on all weekend, in which every retreat attendee's name was written on a brightly-colored slip of paper and people could drop by the table to write anonymous affirmations.

The JoyFamily's affirmation slips made their way into our hands just this past Sunday.

Rose squirreled hers away to be a private source of delight. I'm going to share from the other three, though.

A snippet from JoyDad's:

"I really appreciate your thinking -- your knowing
that what happens to one affects all."

A snippet from JoyMama's:

"You have such perspective on anything you're passionate about & you draw me into your passion. Love it!"

And the affirmations from Joy's sheet, in their entirety:

We are so glad you could be at Retreat!

I value all you teach us.

I love to see your smiling face.

You explore, connect, and explore some more. Thank you for your spirit.

Thank you for everything you teach us, and for being your unique self.

The tears are welling again as I type Joy's affirmations, as the tears came down when I read the sheet to her out loud. We are blessed, so wonderfully blessed, to be part of such an affirming and caring church community.