Monday, February 28, 2011

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 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.


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."

Friday, February 25, 2011


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

Thursday, February 24, 2011

New Resource on Medicaid in the 2011 WI Budget

"It is not incumbent upon you to finish the task.
Yet, you are not free to desist from it."

-- Rabbi Tarfon, Talmud, Pirkei Avot 2:21

This becoming-an-activist stuff is tiring work. I will have to learn to pace myself. And the task is surely not mine to finish, I know that.

But for now, there is a great urgency for me around the threat to Medicaid in Wisconsin in the Walker budget proposal.

I've felt called to create a new resource, to pull things together in a single place, on a new page here at Elvis Sightings. You'll notice it in the top tabs on the blog: WI Budget 2011: Medicaid.

On this new page, you'll find the following types of links:
-- My Elvis Sightings posts on the issue
-- Printable flyers
-- Sites for Activism Alerts
-- Analysis of the Budget Repair Bill
-- Overview articles from the Capital Times
-- Letters to the editor (to help you write your own!)
-- TV news coverage
-- Additional news & opinion

For today, I'll leave you with my yesterday's Facebook activism post (slightly lengthened, since I've got the room):

DIY WI Medicaid activism -- print factsheet copies.
Make large sign: "Take Medicaid out of the Bill! (Didn't know it was in? Ask me more!)"
Make smaller signs with just the first phrase.
Stand in Rotunda [or whatever rally in Wisconsin] with the big sign [I actually used my big pink sign], and pass out flyers & signs to those who approach. Highly empowering!

Give it a try?

Tuesday, February 22, 2011

Praying With Our Feet -- and Our Magic Markers

"Budgets are moral documents."
-- Jim Wallis, Sojourners

In my Saturday morning post, I spoke of taking a Sabbath and not posting on the 20th.

My congregation was holding a weekend retreat at a center about an hour's drive away, and the JoyFamily drove there Saturday morning for a 24-hour getaway.

We needed the break, from the news and the protests and the computers. The week had been exhausting, days on end with insufficient sleep and way too much adrenaline.

However, the retreat also provided a safe space to go in deeper. With our friends, we were able to explore the moral dimensions of the budget proposal and the protests, in thoughtful conversation and in prayer.

I also brought a bunch of posterboard and a fistful of markers to offer an additional option for a craft project activity: making signs to highlight the Medicaid issue, to be conveyed to the press event on Sunday afternoon.

Several of the signs alluded to the moral implications of the budget-repair bill. I particularly liked the ones that said, "Don't deny a voice for the vulnerable." Two of those signs wound up on the wall right behind the heads of the speakers at the press event, in direct camera view.

But even more touching to me was a sign colored by a little fellow of the age of six, just two days older than Joy. For the first two years of Joy's life, our family did a daycare swap with this little guy's family, so he and she were daycare buddies up to the age of two. They've not been close lately, as he is on a typical developmental path and she is on a path all her own; but he really wanted to create a sign, and his mom traced the words "Protect Medicaid" for him to color and explained just a little bit that this was to help Joy and others like her.

His was the sign I chose to hold at the front of the room at the press event (held here by JoyDad on the bus on the way home.)

If you follow the online debate about Wisconsin's budget, or listen to certain newscasts, you will hear the protesters described as greedy, as rioters, possibly even as un-American.

I'd offer the personal view of protesters as people of peace and conscience and deep conviction, many of us as people of faith. I'm reminded of the children's book that was inspired by our congregation in 2005, Praying with our Feet, about taking peaceful, prayerful action for a peaceful world in the face of an unjust war. (The book is out-of-print but can still be acquired through various vendors at the link.)

We're praying in many ways this week. With our feet at the Capitol building. With our magic markers. With our letters to the editor and our calls and e-mails to our legislators.

Please add your prayers / thoughts / positive energies to ours, in any way you feel so moved.

Monday, February 21, 2011

Medicaid in Wisconsin: What's At Stake? How Can I Help?

Rose and I held signs at the front of the room at a press conference yesterday. The event was held to draw attention to the stealth attack on Wisconsin Medicaid in Governor Scott Walker's "budget-repair" bill. Several hundred people overflowed the room, braving freezing rain to come out and show support.

"Stealth attack" is not too strong a term. As I've written before, the Medicaid-related part of the bill is flying almost entirely under the radar, overshadowed by the outrage over the attempt to break public-employee unions (including public school teachers & librarians, setting the stage for immense cuts in education to come.) Now that events in Wisconsin have hit the national news, the story line is still all about the unions.

There's an excellent new article in the Capital Times called "Why Such Little Outcry Over Bill's Impact on Medicaid Programs?" (The same reporter interviewed Rose after the press event. We shall see...) It's been a complex story to try & tell, because the upcoming cuts aren't actually in the current bill. What's in the bill is the unprecendented and undemocratic authority to make future cuts behind closed doors, with neither legislative oversight nor public input.

Now that the press event has given me an eagle-eye view of who all could be affected, I'm more appalled and worried than ever!

Medicaid, otherwise known as Medical Assistance (MA), provides a health-care and community support safety net for the most vulnerable in our state -- seniors, people with disabilities, people with mental illness, people with low incomes -- using a combination of state and federal funding. Over 1.1 million people in Wisconsin, around 20% of our state's population, use some form of Medicaid. Numbers have been on the rise due to the impact of the recession.

The newly-formed Medicaid Matters Alliance, the organizers of the press event, provided the following information, which I quote here directly with a few asides:

• 775,000 children and adults have basic medical coverage in BadgerCare
• 90,000 Wisconsin children and adults with severe mental illness use Medicaid services
• 9800 children and young adults (0-21) with severe disabilities utilize Medicaid community based supports and medical coverage [Personal note -- Joy is among this number]
• 20,500 people with developmental and physical disabilities stay independent at home and in their communities with Medicaid funded supports [Personal note -- Joy will be among this number in the future, if the program is not eviscerated]
• 18,000 seniors stay independent at home and in their communities with help from Medicaid
• 90,000 Wisconsin seniors rely on SeniorCare for affordable prescription drugs

We don't know yet who amoung those 1.1 million will be targeted in the upcoming cuts, nor to what extent those targeted will be hit -- and if the bill passes, we won't know until after the cuts have been made and it's a done deal.

The speakers at the event were varied, passionate, compelling. We heard from:

-- A retiree for whom Medicaid is the only thing that has allowed her to scrape by and live in her own home, after the recession decimated her retirement savings.

-- a woman who has spent half her life with quadriplegia due to a car accident, whose active and productive life in the community is at risk (and who would rather die than be warehoused in a nursing home)

-- several people for whom Medicaid is a lifeline for aid with mental illness issues, either for themselves or their children

-- a woman who lived with an abusive partner for 12 years, who could not have taken care of her injuries without MA, nor could she have left him without MA healthcare for her children (2 of whom have disabilities)

And the stories kept coming. This has the potential to devastate SO many people, each with their own story that has brought them to need medical-assistance help.

There should be thousands of people storming the Capitol on this issue alone!

But the word is only starting to spread.  And the people whom this most affects -- seniors, people with disabilities, people with mental illness, people with low incomes -- are not the ones with the resources to be easily able to hit the streets.

And if Governor Walker had his way, the stealth attack on Medicaid would have already been passed by now.

How You Can Help

People in Wisconsin: Governor Walker is saying that he's only hearing from people who support his position. Contact him and tell him that you oppose the undemocratic Medicaid process changes, and that they need to be removed from the bill. 608-266-1212, or

There are four Wisconsin state senators who have yet to state a position on the bill. If you live in their districts, contact them with the same message as for Gov. Walker -- or if you know anyone who does live in their districts, get them to make the contacts! Click the links for contact information:
-- Sen. Dale Schultz of Richland Center, District 17
-- Sen. Michael Ellis of Neenah, District 19
-- Sen. Sheila Harsdorf of River Falls, District 10
-- Sen. Robert Cowles of Green Bay, District 2

For Anyone: To get updates directly from the coalition fighting to preserve our voice on Medicaid in Wisconsin, sign up at
-- "Like" the Save BadgerCare Coalition on Facebook or visit their website.
-- Join the Medicare Matters Alliance Google Group

Anywhere in the US that the Wisconsin story is being reported at all, a letter to the editor of your local paper would be a welcome help.

And finally, a fun morale-booster action step: Buy pizza for the protesters! Ian's Pizza by the Slice just off the Capitol Square, 608-257-9248, has been getting orders in from all over the country (& world). JoyDad and Rose and I availed ourselves of the pizza-generosity after the press event. Good stuff, great morale-booster!

Thank you so much for all you do. Keep spreading the word, friends!

P.S. TinyURL for this post is -- please tweet widely!

(Tomorrow's post: Joy's friends make signs on her behalf)

Saturday, February 19, 2011

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

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 -- please tweet widely!

Friday, February 18, 2011

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...

If you feel so moved, contact Rachel Maddow ( 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
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 -- please tweet widely.

Thursday, February 17, 2011

Budget Repair and "The Waiver"

In autism circles in Wisconsin, it's often (and not-quite-accurately) referred to as "The Autism Waiver."

It's a section within a the Children's Long-Term Supports (CLTS) Waiver, allowing Wisconsin to use Medicaid dollars for intensive autism treatment.

My daughter received two years of intensive autism therapy through the autism section of the CLTS waiver and now has funding available through a different section of the waiver for things like respite, home modifications (like a plexiglass layer on our picture window so she doesn't bang her head through it), and more. The postive impact on her progress and on our lives has been astonishing.

"The Waiver" is subject to be changed/slashed without notice or hearing if the Walker budget-repair bill passes -- and it just passed the Joint Finance Committee last night, along party lines.

I wrote yesterday about the process part of how the cuts could be made. Today I want to emphasize that the intensive autism therapies are absolutely a part of this, even if the bill doesn't mention them by name.

Here's what kind of changes the Walker appointees in the Wisconsin Department of Health services would be empowered to make to MA and MA Waivers, affecting the autism community AND the broader disability community AND people with low incomes.

-- cost sharing could go up to the full extent allowed by federal law, and if people couldn't pay, they could be denied services.
-- modify existing benefits (as much as they want, as far as I can see!)
-- change eligibility standards
-- revise how providers get reimbursed
-- and more!

Again, as I wrote yesterday -- after the bill passes, this can all happen without public hearing, without public notice.

This analysis comes from a summary of the bill released by the non-partisan Legislative Fiscal Bureau on Tuesday, on page 8 & 9.

The version that passed the Joint Finance Committee was amended to sunset the power to make these sweeping cuts by emergency rule: They'll only be able to work this way until January 2015. When Scott Walker's current term comes to an end. So any new administration would not be able to use the new emergency-rule process to undo the damage.

You should also be aware that the new Secretary of the Department of Health Services, Dennis Smith, is no friend of Medicaid. He has written in the past, during his tenure with the Heritage Foundation, advocating that states should DROP MEDICAID ENTIRELY. This is who will be in charge of the changes.

Time is short. The bill could pass within days, and the only issue that's making the news, that most people know about, is the union-busting part. Even if the unions are saved -- which I surely hope happens! -- the assault on Medical Assistance and the MA Waivers will go through untouched unless somebody starts noticing.

Make some noise, people! This is HUGE and it's happening RIGHT NOW!

P.S. The TinyURL for this post is -- please tweet widely.

Reiterating my new disclaimer (though it's always been true): 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.

Wednesday, February 16, 2011

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 -- please tweet widely.

Saturday, February 12, 2011

It Has Gotten Better

Back in September when I wrote about my terrible, horrible, no-good, very bad experience with Joy's first day of kindergarten, I mentioned another even-worse breakdown that I'd have to write about someday. That experience came back to me this week at swim lessons, so I think it's time to tell the story.

During Tuesday's lesson, I was avidly peering through the glass at the pool waiting-room, watching Joy interact with a new swim teacher. (The wonderful one she started with has left the school, gah! but Joy loves the water so much that she smiled for the new gal anyway.) All of a sudden, a daddy behind me started telling me and another mom how he was a victim in a bizarre robbery incident that got written up in the newspaper. I'm thinking, gosh this guy looks familiar. As he proudly told us how he hassled the cops because he didn't want to tell them his name, and resented that they hassled him back, the feeling of familiarity grew. And suddenly, it clicked. I'd met this guy four years ago at the Children's Museum.

It was about this time of the season in 2007, and I'd been taking Joy to a weekly toddler-music program at the museum. It wasn't an easy thing to do. Joy likes music, but she didn't participate the way the other kids did, and I had to hover carefully to make sure she didn't grab for the other kids' tambourines or whatever. It had only been a few short months since the diagnoses that put the autism and LNSS labels to Joy's situation, labels that still sat like a massive weight on my shoulders.

Suddenly Joy decided she was all-done, and headed for the door. There were two little girls in her way, and instead of going around them like I expected, she gave the first one a shove. The two went down like dominoes, with the second domina grazing her head on a table on the way to the floor. A little blood, a lot of wailing -- and as I started to apologize to the girls' father -- THIS GUY -- his face twisted with anger and he snarled/spat "Thanks a LOT!" He hustled his daughters furiously out of the room before I could say another word.

And I started to bawl. The ugly-cry. Hot, awful tears that would not stop. The sobs just got worse when people started being kind to me... an acquaintance who worked another children's museum program and told me that "this guy" had a museum-wide reputation for unpleasant interactions... another mom with a kiddo on the spectrum who had made great progress... yet another mom who pointed out that any kid might have dealt that shove. It was all so supportive, and yet I couldn't pull it together. Someone even went and tipped off "this guy," who tried to apologize to me on the way out. I was over-reacting so hard to his initial over-reaction, I could hardly acknowledge him. It's a wonder I didn't crash the car on the way home.

Four years later. Once again "this guy" and I have our kids in the same program -- but this time my girl has the support she needs and is having a ball, and I'm in a much better place too, the start of kindergarten notwithstanding. It's kind of amazing to look back over those years and see how far we've come, how much we've learned, how much we've done, how much Joy has grown and matured and progressed.

It has gotten better.

And, we may even be switching our swim lessons to another day so we can have yet a third teacher this term, who happens to be the same wonderful teacher who taught Joy's very first swim lessons in the summer of 2008. Which would have the nice little bonus that I wouldn't even have to hang out poolside with "this guy"!

Monday, February 7, 2011

Farewell Gifts

Joy's GoTalk communication device had a once-in-a-lifetime message on it for sharing time with her kindergarten class a week ago Thursday.

I said goodbye to my (GrammaJ) last night. We laughed together.

GrammaJ has survived so very much. She lost half a lung to lung cancer years ago, I think it was before Joy was even born. She battled back from a temporarily paralyzing stroke and walked again. She triumphed in a round with breast cancer. She adapted her lifestyle to diabetes and shed a lot of pesky pounds, learned to speak in a whisper after her vocal cords were damaged in surgery, slowed her pace to accommodate heart issues.

But this time is different. GrammaJ is in a hospice facility, and her remaining time with us is likely very short now. It happened suddenly. On January 2, she and GrampaK hosted the family at their home for our fourth Christmas of the season. A week later, she went into the hospital for some tests. A week and a half after that, she was on her way to hospice, with the news that the lung cancer had roared back overwhelmingly, untreatably.

GrammaJ is GrampaK's second wife, with the longer of the two marriages: they just celebrated their 20th anniversary this past year. They married just a couple of years before JoyDad and I started dating. They were in Wisconsin, we weren't -- so I didn't get to know either of them very well until we too moved to Wisconsin in 1998. Then we discovered her warm hospitality and sweet personality and fun-and-feisty sense of humor, and we grew to appreciate how well she and GrampaK were matched!

When we had kids, there was no question that she would be "Grandma" -- not step-grandma or some other nickname, but really-truly grandma. JoyDad's mother passed away before the girls came along; Joy had just turned one when we had to say goodbye to my mother. The girls' step-grandmas ARE their grandmas.

GrammaJ has been so flexible and loving with Joy's needs. She carefully Joy-proofed their home when we'd visit (an extensive task due to many knick-knacks and collectibles!), made sure to serve food the girls would eat, and brought the most delicious cakes for their birthdays. In fact, Rose had me make lemon cake for her birthday party this weekend, with GrammaJ's special super-lemony recipe.

GrammaJ's Elvis Collectibles

The chance to say a final goodbye is a difficult gift. Rose remembers the goodbye trip to Kansas when my mother was in her final hospice-weeks, so for her there's a familiarity to this. She has been processing this farewell quietly and somberly so far.

With Joy, I've had bouts of angst in the past about not being able to properly explain deep and momentous things, from the death of our bunny Phoebert to the birth of the Christ child. Somehow in this farewell, I'm not feeling that way. Not that I have a much better sense of what she does and doesn't understand. I don't. But somehow a few simple, straightforward sentences are enough this time. Maybe, put together with whatever she heard when her classmate's father died of cancer last fall, she is processing this on some deep level. Or maybe not, and these connections will come together another time. Either way, she is who she is, and it's going to be OK.

It was very important that our whole family get to be in on the visit to GrammaJ. We went mid-week, heading out directly after school. Rose had drawn a picture for GrammaJ, an early Valentine to hang on her wall. Joy had brought -- herself. And her giggles! GrammaJ was sitting up in bed, awake and happy to talk with us and exchange hugs. Joy entertained GrammaJ with a giggly sneezing-game, where Joy & partner exchange utterances of "ah... ahhh... ahhhh..." and then comes a joyful "CHOOOO!" GrammaJ shared her apple juice from dinner; we weren't sure what Joy would do, since she's been refusing apple & most other juices since last April. But Joy accepted the gift of apple juice with a smile, and drank almost the whole thing.

I so appreciated the chance to see GrammaJ, and give her a hug, and tell her what a magnificent grandma she is. And that I love her, and to share the message that I first told Rose during our last visit to my mother -- that a loving God is taking care of all of us, and will still be taking care of grandma, even when she's not with us any more.

We love you, GrammaJ.

Elvis - Can't Help Falling in Love

Wednesday, February 2, 2011

Snow Sculpture

Two photos.

Before (as last night's blizzard was just starting to gain steam):

After (the blizzard had blown and snowed and sculpted all night):

The Almighty has a pretty impressive touch with this snow-scuplture stuff.