Election Day

The presidential candidates have made their final arguments.  I've been making a final electoral argument too, on the political sites I frequent, arguing that for many people whose lives are affected by disabilities, this election hinges on Medicaid.  (Prof. Paul Krugman of the New York Times has made the Medicaid argument too, so I'm not alone in this.)

However, when I went and looked at my closing argument regarding the Walker recall here in Wisconsin this past June, I realized that what I said then still does a great job of summing up this presidential election, from a different emphasis.  Here's what I said [with a few additions in square brackets]:

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Walker's Wisconsin represents a future that the wealthiest of the far-right have been coordinating and working toward in America for decades now.  I didn't understand it until the events of last February [2011] opened my eyes.  But it is real, it is dire, and it has been in process of happening for years now in this country.  The end-game is plutocracy -- government by the wealthy, for the wealthy.

That's what the ginned-up anger about taxes is about -- so the wealthiest and their corporations can continue to pay less and less toward the common good.

That's what the privatization movement is about -- private prisons, private schools, private all-sorts-of-things that have traditionally been public enterprises but are in the process of claiming more and more tax dollars to the profiteering benefit of the few.

That's what demonizing unions is about -- the last coordinated voices on behalf of workers, who have already seen wages stagnate over the past few decades, falling further and further behind the rising cost of living, while CEO pay rises into the stratosphere and the wealthiest of the wealthy hoover up the lion's share of the past decades' economic gains.

That's why money has been defined as free-speech -- for the purposes of buying electoral majorities in both the courts and the legislatures, so that the plutocratic policies can pass with unstoppable margins.  (Witness the astonishing flow of big-donor dollars, 70% from out of state, to the Walker coffers.)  [This time around in Wisconsin it's the Baldwin/Thompson US Senate campaign, which has attracted more outside spending than any other national race this cycle other than the presidency and a Senate race in Virginia.]

By the money-is-speech definition, disability issues tend to be pretty darn silent as well.  I've written before about the ALEC threats to insurance mandates, the devastating and irresponsible cap on Wisconsin's Family Care program (which the federal government subsequently forced the state to lift), the (so-far unsuccessful) attempts to privatize special education in Wisconsin.  The disability lobby is not a wealthy one.  We've got people-power -- but not money-power.

Wisconsin's issues are a microcosm of a nationwide takeover.  I've come to believe that plutocracy is THE central issue of the upcoming national elections this November.

We need to push back whenever and wherever we can.

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Please vote.

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 (ElvisSightings@gmail.com) 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!

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!

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.

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.

Random Thoughts

It hasn't been the kind of week that serves coherence. So, today on Elvis Sightings, a heaping helping of stream-of-consciousness.

• We all went to Grandma Judy's wake last night. It was so good to be with family, and to take part in this shared ritual of closure. Neither Rose nor Joy had ever encountered an open casket before. But Rose bravely went up to the front to "pay her respects" as we had discussed with her beforehand. Joy went up a little later in my arms. I think she might have been a little confused, as she reached out to Grandma Judy with an uncertain smile. I told her that it was time to say "bye-bye." She gave a small wave and an adorable spoken "bye-bye."
• Goodbyes are so hard.
• We had brought all sorts of tools and tricks to get the girls through the evening, from a portable DVD player & Baby Einstein to Rose's sketchpad and her little ZhuZhu-pet video game. But it was AuntieS who saved the day. She brought a brand-new travel set of the game Guess Who? that Rose could play with her cousin. For Joy, she brought one of those soft plastic bath-scrubby-poufs with a terry-cloth ducky in the middle. Once again AuntieS scored big, as she did with the curly-ribbons at Thanksgiving time. Joy spent the rest of the evening watching video and happily shredding the bath-pouf. Simply perfect.
• JoyDad will represent our little family today at the memorial service and burial. It didn't make sense to try to chivvy the girls through a day as long as this one will be. I'll be there in spirit, though.
• This all comes at the end of a long, hard week. It's been on my heart to join the amazing huge creative peaceful protests at the Capitol building, and re-fill myself with their hope and energy, but I've been unable for over a week. Schedule is part of it, and sickness even more. Both Rose and Joy were home from school most of the week fighting the flu, and I was trying to care for them and fight pneumonia myself. Thank heaven for antibiotics (for me), and for speedy recovery (for all of us.)
• The events of the day in Wisconsin continue to seep into most everything we do. When I went to the deli counter last weekend, wearing my "Save Medicaid" sticker on my coat, the guy at the counter asked "So, what can I get for you? [pause] Besides a new governor?" When I went to the doctor with my complaint of sleeping difficulty and on-rushing bronchial issues, he asked me whether there was a movement to recall this governor who has pushed forward this extreme agenda so very far in excess of anything he'd campaigned on. I left with prescriptions for the aforementioned antibiotics, a sleep aid, and the doctor's personal e-mail address -- promising to send him the website address where he could add his name to the pre-recall database at http://www.unitedwisconsin.com/. (In this state an official must hold office at least a year before a recall can take place; at that time, there is a 60-day window to collect sufficient signatures.)
• Healthcare workers and professionals are marching in support of Medicaid in Wisconsin today (Saturday), starting at 11am on campus at Library Mall. I wish I could join them, but I'm on childcare today. I'll be thinking of them, and looking forward to seeing pictures.
• I was on childcare last Saturday as well, while JoyDad and brothers were helping GrampaK get some things taken care of. Let me be clear, I am ever-so-willing to hold up my end and do what needs to be done! but last weekend it meant that I ended up forgoing the opportunity to be in this political ad: http://www.youtube.com/watch?v=ecsX7HxRork. I have not embedded the ad-video here because it is highly partisan, and frames the events in Wisconsin as a "war," terminology that I would personally prefer to avoid. But it's a powerful piece, and I would very much have liked to add my story and get a mention of Medicaid into the ad, something that did not happen in my absence.
• However, it's not as if I'm lacking a voice this week. I've had the opportunity to have some of my writing published on a national level (under my real name, so no link here, sorry!) And that feels good.
• After several weeks of high intensity, I do feel now that the initial frantic urgency of "Medicaid emergency and nobody even knows!" is receding. People do know now, and many other voices are being heard. It's time to take a deep breath, and move things to a level more manageable for the longer term.
• Right after I write just one more blogpost / Facebook status / protest letter...

Learning Curve

"Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."
Matt. 25:40, from a parable of Jesus

I heard something from Joy last night that came as a total surprise, something long awaited, something I've wanted to teach but I didn't know how.

She said, "Sorry."

It wasn't just once either -- it was all of three times! Granted all three were echoes, prompted by adults. And I'm not at all happy about the incidents that prompted the need for apology: a hairpull, throwing a toy in the church nursery, tromping hard on her sister's toes. I'm simply rejoicing, however, that she's able to make that echo, no matter how much she understands or doesn't! It will make peer relations so much easier.

"Sorry" has a steep learning curve. I'm engaged in a process with a steep learning curve as well.

I gave a presentation last night to the adult Sunday-school class for my congregation, on Medicaid in Wisconsin and the so-called "budget-repair" bill. Members of our congregation have been deeply involved in citizen action in the wake of the various threats represented by the bill: to livelihoods, to the right to negotiate collectively, to the University of Wisconsin, to public education, to our economy as a whole, and so many more. People from our congregation have marched, written letters, signed petitions, shared information, and even had a group sleepover at the Capitol building on Thursday night (complete with kids!) I was moved by the enthusiasm at last weekend's retreat, creating a lovely pile of protest signs about the still-little-understood threat to medical assistance and public input that the bill contains.

At the retreat sign-making activity, I found myself asked to explain exactly what I meant when I said "Medicaid" and "medical assistance" and "BadgerCare," and found myself coming up short. Fortunately the press event that next afternoon got me started with a lot of information that I then wanted to share. I did share some of it here on the blog, but Medicaid is a complex program with many, many parts. I realized that I was feeling called upon to share still more, and to ask my congregation for further commitment and action.

So I offered to teach an adult Sunday-school class, and they gave it to me right away.

I wish I could do justice to the insightful questions and comments that came up during those 45 minutes. I was surely pushing the limits of my expertise, and others -- doctors, social workers, MA recipients -- chimed in with a will. One comment right at the end of the session, though, reminded me most poignantly how much I still have to learn.

I am coming from a frame where my family receives medical assistance funds for the purpose of making it possible for my daughter Joy to live at home rather than in an institution. During my LEND fellowship last year I heard a great deal about the history in Wisconsin and beyond of the policy shifts than now enable people with disabilities to move out of institutions into the community or to avoid institutions altogether, generally at significant cost savings. I also heard moving stories at last week's press event from people who rely on Medicaid dollars to live as productive community members, and are scared beyond belief that their support will be taken away and they will be warehoused in nursing homes.

This bias rang so loudly through my presentation that I failed to acknowledge the immense, vital role played by institutional facilities in situations where people's needs are so great and complex that living at home or in the community is not the best, or healthiest, or even survivable choice. And the commenter was deeply concerned about that aspect of my presentation.

Shoot, I knew better! I'd only to think of GrammaJ, now in her last days in a hospice facility. GrampaK could never have taken care of her at home these weeks!

So I needed to get called on it, a painful but necessary public corrective. Indeed, the voices of those who need such a level of care are even less represented than those who are succeeding in the community. Truly "the least of these" when it comes to having a voice in the public debate. Their funding is at risk too.

I listened. I let my thoughts be changed. I acknowledged my shortcoming, and apologized.

There is precious little listening coming from the Governor of Wisconsin and most of the legislators of his party who have (for the most part) been marching in lock step with the bill and its outrages and its timing.

However, word has it that one of the Republican state senators who has previously been in favor of the bill, has now changed his mind and says he will vote against it: Sen. Dale Schultz of District 17. He can be thanked at sen.schultz@legis.wisconsin.gov. Only two additional no-votes are needed. Update: the previous paragraph now appears to have been an unconfirmed rumor. Sigh.

There have been calls for Governor Scott Walker to begin listening, and mind-changing, and even perhaps apologizing. This scenario is not likely. But minds and hearts will need to be open to change, to negotiation, to the needs of the vulnerable, in order for the outcome of this budget process to be anything but catastrophic.

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So as to end on a lighter note, I'll close this morning with a joke that's making the rounds on Facebook. Peace out!

A unionized public employee, a member of the Tea Party, and a CEO are sitting at a table. In the middle of the table there is a plate with a dozen cookies on it. The CEO reaches across and takes 11 cookies, then looks at the Tea Partier, and says, "Look out for that union guy, he wants a piece of your cookie."

Hostage-Taking

My heart is aching this morning.

I awoke to the news that the Wisconsin Assembly had passed the "budget repair" bill, unamended, in a sudden rush vote after midnight last night. They ran the roll-call so quickly that not all legislators even had the chance to push their button to register a vote.

Then I saw this article in Madison's Capital Times:
Walker warns Medicaid payments to nursing homes could be delayed if bill not passed

Governor Scott Walker of Wisconsin is now holding senior Medicaid recipients hostage over the passage of a bill (which can no longer be amended -- the struggle is now to scrap it altogether) that would turn future decisions on Medicaid over to his own appointee Dennis Smith, who has taken positions hostile to Medicaid. His aim is to force the return of Democratic Senators who have left the state, to complete the forcing of this bill upon the state of Wisconsin.

This is wrong. This is so very wrong.

P.S. As pointed out by Suze in the comments, there's an inspiring and heartbreaking Capital Times story online today:
Disability rights activists stage protest inside state GOP headquarters