Taking Action on CARA

UPDATE 9/15: I just got the following e-mail from Autism Votes:

We have learned that House Majority Leader Cantor has affirmed his pledge not to allow the federal commitment for autism to expire by supporting the Combating Autism Reauthorization Act (CARA) of 2011 and allowing the bill to go to the House floor for a vote early next week. Thank you so much for all your hard work the last few days in sending him emails and making phone calls.

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I've got several blogposts backed up in a jumble in my mind, but I'm going to hit an urgent advocacy-alert one first.

The Combating Autism Reauthorization Act of 2011 (CARA) needs our help to pass by September 30th.

CARA is a 3-year re-authorization of federal funding that's been in place since 2006, which was first passed during the GW Bush administration. The funding focuses on expanding research and coordination through the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention, and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families.

For me on a very concrete level, growing from how Joy has propelled me into autism advocacy -- this is what funded my LEND training two years ago, an amazing program that Elvis Sightings readers heard about at length as my LEND year progressed. Via a state implementation grant, it also made possible the summer work that I did in 2010 on a recently-released publication called Finding Your Way: A Navigation Guide for Families Who Have Children and Youth With Special Health Care Needs and Disabilities.

On a macro level, this funding has helped with great strides in research and education and awareness all across the country. We can't let it stop now!

The key legislator right now is House Majority Leader Eric Cantor, who was a co-sponsor of the original 2006 act and must bring CARA to the House floor for a vote in order for it to pass. UPDATE: He pledged to do it!! Can you give his office a quick call? Here's the phone info & a short script:

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Call House Majority Leader Eric Cantor and politely ask him to allow the Combating Autism Reauthorization Act (H.R. 2005) to go to the floor for a vote. CALL HERE: 202-225-4000

What to say:
"Hi. My name is [name] and I am calling to ask Leader Cantor to allow HR 2005, The Combating Autism Reauthorization Act, to go to the House floor for a vote. The funding is crucial for research and awareness on autism, and support for children with autism and their families. Thank you."
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If you've got another couple of minutes, here are some quick next-steps:

1) Follow up the call to Cantor's office with an e-mail -- this link will help generate one for you! Here's a new link to communicate a thank-you message!

2) E-mail your own Senators & Representative: if you follow this link to the Autism Society "Vote 4 Autism" page, you can read more about CARA and then click on the "Take Action" button to send messages to your legislators.

Thank you so much, in advance!

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P.S. The initiative is crucial but the title of the law is... unfortunate. I like the acronym CARA much better, meaning "dear" or "beloved" in several languages.

What Rose Did On Her Spring Break

I'm happy to report that we survived both spring break, and the following week! Joy didn't have too much trouble with the break itself, but the first few days back at school last week were reportedly rather rough. Fortunately there were lots of giggles in the latter part of the week, both at school and at home.

I didn't quite realize how much we had done, until Rose told me about an assignment for her class. They were to write an "A to Z" poem in rhyming couplets about what they did during their break! Our spring break was a "stay-cation," with only a day-trip on Easter Sunday, but somehow we managed to pack a lot in. As evidenced by the poem that resulted! (Spelling is original to the author; I did change the one name in keeping with this blog's pseudonymous practices.)

A to Z Spring Break
by Rose
A is for April the month of Spring Break
B is for Baskets we fill with eggs that are fake
C is for Candy that fills the fake eggs
D is for my aunts Dogs who walk on four legs
E is for Egg hunt out on the grass
F is for Family who's love always lasts
G is for Get togethers with all my friends
H is for Happiness 'cause the fun never ends
I is for Illinois the state I traveled to
J is for Jelly beans that are fun to chew
K is for Kugel which I ate at Aunt Lou's
L is for Looking to buy some new shoes
M is for Matzoh a passover food
N is for Nice when I'm in a good mood
O is for Oven for baking bread
P is for Press confrence where speeches are said
Q is for Quiet time with books to read
R is for Running outside at great speed
S is for Sister who's really great
T is for T-shirts to decorate
U is for Under the tree with my sister
V is for a Visit with Senator Risser
W is for Walking the Autism Walk
X is for X-tra time to talk
Y is for Young plants begining to grow
Z is for Zoo where we didn't quite go.

Yes, the girls and I attended a press conference in the Senate parlor at the Capitol, followed by a meeting with our state Senator in his office to lobby about education and autism insurance. An unforgettable spring break civics lesson! Joy rode in her jogging stroller, and happily played with a cheerleader pompom and ate pretzels while all the action was going on.

And we did plan to go to the zoo one morning, but had a schedule change at the last minute. Oh well. We'll look for a nice spring-like zoo visit day soon.

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!

Help me with my homework?

Greetings all,

Sorry I've been a little bit scarce around here. Our home computer got virus-munched earlier this week, which has caused certain spinning plates to go all wobbly. With any luck it'll be back up and running by Monday sometime. Till then, I'm making extra trips to the office for e-mail forays and LEND coursework. Like now.

So, speaking of my leadership coursework... want to help?

One aspect of the course is a policy-advocacy component, which will involve selecting and researching a policy issue, and eventually visiting with a legislator. I need to brainstorm potential autism-related policy areas among which to choose -- as you know, I've been active around the issue of autism-insurance in Wisconsin, but the legislation did pass (yay!) and I'm thinking of taking on something else.

Here's the brainstorm part of the assignment:

Brainstorm a list of challenges that children and youth with autism and their families face.

I figure one might add "upon which legislation might be brought to bear." But maybe that includes all of them, if defined broadly enough?

Anyway. Your assignment, if you choose to accept it, is to list some such challenges for me to add to my own list. Who knows, I may pick your issue for my big policy push!

Ready, set, comment!

My Brain is SO Full.

The past two days have been amazing.

Those who have been following the continuing saga here will know that just a few short weeks ago, I learned about an exciting program at the university here. It's an interdisciplinary leadership training program, funded by the federal Maternal & Child Health Bureau, going by the acronym LEND, which stands for Leadership Education in Neurodevelopmental Disabilities. Turns out there's a whole network of these LEND programs. The point of the program is to catch up-and-comers as they're training for professions working with people with neurodevelopmental disabilities. Our group of 27 includes occupational therapy, speech therapy, physical therapy, public health, audiology, genetic counseling, nutrition, social work, psychology, and "family support" (parents and other family members). These people work together with the immense resources of the university's center for neurodevelopmental disabilities, devouring the smorgasbord of content, linking up with experts, pursuing leadership goals and projects and advocacy, being mentored by families in the community.

I am stunned that I am to be one of these leaders. But oh, how right it feels.

It's very encouraging to see what future leaders (guess I should say "we," huh?) are being taught. The very first slide of the first presentation of the two-day orientation started out with a series of photos -- the world, our continent, our state, our city, the university, our center's buildings. The point was: we're starting here... to change the world!

Here's a mantra worth remembering: Family-centered, community-based, culturally-competent, co-ordinated care. (How many of us have that, blogfriends? Who do we see in our communities who doesn't have that? What would it take to make that ideal a reality?)

We got a whirlwind overview of some federal disability-legislation highlights in the past 40-plus years, together with the observation that many big changes had their roots in parents seeking better lives for their kids...

We were given a case history of a family who might come to the center for a diagnosis, and met in groups with professionals from all our different disciplines who spoke briefly about their field and what their field might be able to bring to the diagnostic process and the interdisciplinary team that might work with this family...

I'm in a much better place for taking advantage of conversations than I was in my library-grad-school days. Back then I was mighty shy. Quiet. Not the one hobnobbing with the faculty, or even my fellow-students like I might have. Well. The "me" of the early 90s would hardly recognize the woman who was doing so much conversing during the breaks that there was barely time to eat!

Just one example of my high-powered classmates in this endeavor -- struck up a conversation with a gal sitting next to me in a presentation, established that she's going to be on my interdisciplinary team (autism-focused, woohoo!). Her field is public health, she's very interested in policy and advocacy, and she's actually been sitting in on the meetings with the Insurance Commissioner's office that's hashing out the rules for how Wisconsin's new autism insurance legislation will be put into practice! Is that an awesome inside source, or what?!

The last half of Thursday's orientation was to the center itself, the entity within the university that brings the focus and the education and the research to neurodevelopmental disabilities. We got a high-powered overview and then a tour of various research labs. My group's last stop of the day was in a first-floor room with a foot-and-a-half thick concrete door, that held a proton-accelerator with which that particular brain-imaging lab made its own radioisotopes for use with PET scans. Good grief. Me and my best buddy the proton accelerator!!!

My brain is so full.

Yesterday afternoon had another powerful component though, that spoke to another part of me.

First was the introduction to the center. I hadn't known this, but the entity has the imprint of the Kennedy family all over it. The initial funding came from Joseph Kennedy Jr.'s foundation. The presentation included a telegram from President Kennedy, congratulating the fledgling institution and confirming that Senator Edward Kennedy and Eunice Kennedy Shriver would be attending the opening gala... Oh, how they will be missed! And. The telegram was dated November 20, 1963. Just a couple of days before John F. Kennedy went to Dallas. Oh my.

And then. There were images in the presentation of a sweet girl who used to be in Joy's daycare, who later went to the daycare at this university center. An inspiring child and family... she has proved nay-sayers wrong again and again about her challenges.

Then there was a panel presentation with parents and also a high-school girl who has disabilities herself. The young lady stole the show. Speaking was not the easiest thing for her... she had a timed PowerPoint presentation full of lovely photos with short captions and was having trouble reading the captions before the thing switched to the next photo. After she started over several times and was getting visibly frustrated, someone came up to try and help her. She shooed the adult away, and eventually made it work herself!! She and her sister run a jewelry business together, and she enthusiastically sold us her wares afterwards during the break... gonna wear my new earrings at next Friday's seminar...

Here's a quote from one of the parents, who has a son with autism and a typically-developing daughter. "When my daughter said her first word, it was wonderful. When my son said his first word, it was heaven."

I'm tearing up just typing this. You can bet I was weeping during that panel.

Oh yes, my brain is full. So is my heart.

Three Unexpected Hugs

Sorry I've been a little scarce for a few days. Had two presentations in rapid succession, first a short reflection for Sunday night's worship service, and then a public-comment presentation for the Wisconsin Autism Council (related to my Updates & Downdates post back in March.)

Both went well. In fact, the Autism Council meeting was the site of the first unexpected hug today.

The Autism Council is an advisory body, appointed by the governor, meant to provide guidance to the Department of Health Services on statewide supports and services for children with autism, particularly the Medicaid waiver program through which the state is providing intensive services for Joy. They meet quarterly, and the first half-hour of each meeting is reserved for public comment from anybody who wants to show up and speak up.

There was one other mama who had signed up to speak before me, who had a concern about children being bumped out of the program for supposedly making too much progress, even when the needs were still substantial. We chatted a little before the meeting and established some common ground, but I was still startled in a good way when she had finished her comment and I was going up to give mine, and she caught me in a warm hug and wished me well.

Whether it was the hug that did it or not, I felt that my remarks about providing intensive autism services in natural settings other than the home were well-received by the Council. There was a department administrator (not a Council member) who responded at length, downplaying my concerns to some extent, but I spoke back up again and I think at least made myself heard. I got to have some additional conversation with one of the Council members out in the hall so as not to disturb the meeting. Made me feel like a player, at least! We'll see what's next.

Then toward the end of the day, I got another hug. This one was when we went to pick up our new Honda Fit that I mentioned randomly a couple of weeks ago. Such a cute, bright-red creature it is! We worked with the same saleslady who sold us a CR-V eight years ago, an enthusiastic and down-to-earth person who loves her job and does it well. A new car purchase is a celebrative occasion at this dealership, complete with a big red bow on the top of the car and an official photograph of the happy owners with their new purchase. Unfortunately I had to scoot back home with Rose before we'd had the full grand-tour of the new purchase, to relieve our neighbor who was sitting in on a Joy therapy session, but as I was making our goodbyes I got a great big saleslady hug. Thanks and cheers all around!

OK, that's two hugs.

The third hug-event of the day was one that happened while we were out signing the car-papers. When Rose and I arrived home, Joy's barista was eager to share a moment from the therapy session. She and Joy were exchanging hugs and Joy twice said the word "hug," both times with exaggerated "h" and "g" sounds. "I'm pretty skeptical about these things," said the barista, "but if I weren't so skeptical, that sure did sound deliberate!"

Reminds me of the Popeye Sighting from last October. That hug-word is IN there. It surely is.

What a fine day for a hug, or two or three!