Not So Lucky As All That

Last November I wrote a post with the title Lucky, wherein Rose and I discussed how much things had changed from when I was in elementary school and kids with disabilities didn't get educated in the same schools as their typically-developing peers, if they got to go to school at all.

Her priceless summation of the situation:

It's so lucky for Joy's class that they get to know her and have her in school with them!

Those words are haunting me just now, as we're thinking ahead to next year with IEP-ing and with filling out questionnaires that will inform how next year's classes get assembled.

You see, although students with disabilities at Rose & Joy's elementary school are educated in classrooms with typically-developing classmates, it's not spread out evenly across the school. The school practices "clustering," whereby the kids with IEPs all get assigned into just one or two classrooms per grade, so that the special-ed staff can focus there and collaborate with just one or two regular-ed teachers. (A similar thing happens with students for whom English is a second language).

What ends up happening is that the ratio of disability to non-disability in the cluster-classes gets pretty far out of whack in comparison to the real world. Any behavior issues associated with the disabilites end up concentrated too -- and multiplying upon one another. And it can leave some folks thinking that students with and without disabilities really shouldn't mix, because look at all the problems that arise!!

It also means that Rose is not so lucky as all that.

Like her mother 40 years before... Rose has never been in a homeroom class with a student who has a significant developmental disability.

Just now, that feels incredibly unlucky to me.

ABLE Accounts and "A Bad Place"

UPDATE -- This post from 2009 had somehow disappeared from the web into "draft" status! I'm glad to retrieve it, because it's time for an update. The Achieving a Better Life Experience (ABLE) Act failed to pass in its 2009 incarnation, but was re-introduced in November as the ABLE Act of 2011. The link is to a widget from Autism Speaks that will help you to contact your federal legislators and ask them to sign on as co-sponsors. Please read the piece below -- it may be familiar, if you're a long-time reader of this blog! -- and then please click and contact. Thanks so much!

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"You're in a bad place."

That's how the lawyer summarized our situation, with regards to saving for Joy's future needs.

Not long after the births of Rose and Joy, we started saving for their future higher education needs, with our state's 529 educational savings plan, a nice tax-exempt way to be saving and planning ahead. We have a relative who has done the same for them in another state, too.

Rose is, pretty obviously, a very good bet for higher education eventually, little human dictionary and all.

With Joy, the educational trajectory has been so confusing. We really have no idea what will be going on with her by the time she finishes school (or the school system finishes with her). Heck, she's only four [update: now she's seven, and we still have no idea!]

But as she gets closer to entering the school system and yet keeps regressing away her various gains, we started to wonder about the wisdom of the 529 accounts for her. The rules of the 529 are clear: you can only use it for higher education expenses. If you take it out for anything else: big honkin' tax hit.

We surely don't want to sell Joy short, but it seems pretty clear that she's going to have some needs beyond the norm as she matures. Those needs may have to do with higher education, but they may not! We don't want our savings for her to be locked into something that's not flexible enough to meet her needs.

That's the situation that sent us to the attorney, to ask about the potential of a special needs trust.

That's the situation he shook his head at, and called "a bad place."

The thing is, a special needs trust isn't designed to be a place for you and other relatives to sock money away incrementally, like the 529 for higher education. The special needs trust is a vehicle where you move a big chunk of change for the later support of a disabled person, and it's highly hemmed around with restrictions to keep unscrupulous folks from using it as a tax shelter when disability isn't really the issue. You need to be very sure you've got an ongoing disability situation before you start down the special needs trust road, and then it's definitely lawyer-business (i.e. attorney's fees) to set up, unlike the 529 that you can do on your own.

But the 529 isn't a great bet for her either, given the uncertainty of her situation. The attorney didn't know what to advise us, except that there weren't any really good options for us.

We were told that federal legislation had been introduced in the past, to create a vehicle similar to the 529 but for expenses related to disability. But it had never managed to go anywhere.

Except that there's been a big election between then and now! [Update: hmm, the 2008 elections didn't manage to make the difference. Maybe there will be some traction as elected officials campaign for 2012?]

And... the legislation has been introduced again, both in the House and Senate, on February 26, 2009. It's called The ABLE Accounts Act of 2009 (ABLE stands for Achieving a Better Life Experience), and the bill numbers are H.R. 1205 and S. 493. [Update: the 2011 version bill numbers, introduced Nov. 15, 2011, are H.R. 3423 and S. 1872]

Here's a summary of the legislation (updated link & summary for 2011):

The ABLE Act -- introduced with bi-partisan support in the House (HR.3423) by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate (S.1872) by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC)-- would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

And what could it be spent on? Glad you asked...

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

Here is a link to the text of the bill itself (Senate version for 2011, in pdf). One element that I was glad to see: it looks as if one would be allowed to transfer money from an educational 529 into an ABLE account without the tax hit.

[In 2009] the bill was introduced in the House by Ander Crenshaw (R-FL), with co-sponsors Congressmen Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA), and Kendrick Meek (D-FL). In the Senate, it was introduced by Senator Robert Casey (D-PA), Senator Orrin Hatch (R-UT), and Senator Christopher Dodd (D-CT), and co-sponsored by Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS). Update: in 2011, it was sponsored in the Senate by Robert Casey, Jr (D-PA) and Richard Burr (R-NC); in the house by Ander Crenshaw (FL), Chris Van Hollen (D-MD), and Cathy McMorris Rogers (R-WA). Bipartisanship, can you even believe it?!

Please take a moment to drop a note or call to your senators & representative urging them to support/co-sponsor this bill. There's a handy page for generating constituent support letters over at Autism Speaks, or you can look up your elected officials' contact information here and contact them directly.

If you can take a few minutes to do this, that would make us so happy! And you'll have earned the right to come back and brag about in the comments about how you're helping us get to a better place!

Do let me know if you have any questions, either in the comments or via e-mail.

Special Needs Vouchers in Florida: "Like a Perverse Science Experiment"

Here is how a recent article in the Miami New Times described Florida's McKay Special Needs Scholarship program:

It's like a perverse science experiment, using disabled school kids as lab rats and funded by nine figures in taxpayer cash: Dole out millions to anybody calling himself an educator. Don't regulate curriculum or even visit campuses to see where the money is going.

Except that description isn't fair to science experiments, in the absence of an attempt to create a hypothesis capable of being tested, or to collect meaningful data.

The article, titled "McKay scholarship program sparks a cottage industry of fraud and chaos," tells a very different side of the story than the glowing voucher-advocate reports that are being used to promote similar legislation in Wisconsin.
The program works like this: any public school student with an Individual Education Plan (IEP) may enroll in a private school using taxpayer dollars that would have been spent for their public-school education. Public schools are required to provide a free and appropriate education to students with disabilities under the federal Individuals with Disabilities Education Act (IDEA).

Unfortunately, the private schools have no such requirement. They don't have to provide anything, or have so much as a single special-educator or therapist on staff. Not even when they're taking students funded with taxpayer dollars.

In Florida, according to the Miami New Times article, getting in on the McKay money is ridiculously simple:

Registering a private school is as easy as filing minimal start-up paperwork. Becoming eligible to receive McKay payments isn't much tougher and relies mostly on the honor system: You must claim to have a location, promise to run background checks on staffers, and either have been in business for three years or have access to a surety loan or line of credit.

These astonishingly loose conditions are followed up with an almost total lack of accountability, allowing fraud to flourish. In the 12 years since the program was introduced, there have been 39 Department of Education investigations in McKay voucher fraud, only 3 of which have resulted in arrest. Far from being an accolade for the quality of the program, it's an indictment of the lax oversight: the department rarely looks for trouble unless someone -- often "an associate with an axe to grind" according to the Miami New Times article -- files a report. Former Florida DOE investigator Seth Stoughton, specializing in voucher fraud, told the New Times that the most proactive his investigations ever got was driving around with an address list of McKay schools to make sure that schools actually existed at those addresses. He claimed that the DOE failed to uncover "even a significant fraction" of the existing fraud.

A couple of examples via the New Times of the fraud that was revealed:

- The most common caper involves simple forgery: school administrators doctoring attendance records and signing parents' names to show that students are enrolled when they're actually not. Jacksonville's Success Academy — which received $4.8 million — was likely the largest such case. From 2001 through 2005, the school accepted $421,000 for 52 students who were enrolled in public schools.

- At Muskateer's Academy in Hialeah (Stoughton says of the name: "I think they just had no idea how to spell"), husband and wife school owners Jacqueline and Erick Cermeno were indicted for stealing several students' disability information to falsely enroll them and pocket thousands in tuition. Muskateer's received $794,000 from the state.

But outright criminality is only one of the problems among schools accepting McKay vouchers. Since the curricula and teachers and locations are essentially unregulated, it leads to situations like the following at South Florida Prep:

Two hundred students were crammed into ever-changing school locations, including a dingy strip-mall space above a liquor store and down the hall from an Asian massage parlor. Eventually, fire marshals and sheriffs condemned the "campus" as unfit for habitation, pushing the student body into transience in church foyers and public parks.

The teachers were mostly in their early 20s. An afternoon for the high school students might consist of watching a VHS tape of a 1976 Laurence Fishburne blaxploitation flick — Cornbread, Earl and Me — and then summarizing the plot. In one class session, a middle school teacher recommended putting "mother nature" — a woman's period — into spaghetti sauce to keep a husband under thumb. "We had no materials," says Nicolas Norris, who taught music despite the lack of a single instrument. "There were no teacher edition books. There was no curriculum."

Not only are desperately substandard schools receiving taxpayer money, the public schools appear to be actively pushing high school seniors out the door and into McKay schools before they have to take the all-important FCAT exam:

Beginning a few school years ago, Carol City Senior High social studies teacher Paul Moore was mystified by a new, perennial exodus of his "problem" seniors — students who might fare badly on FCATs. They were kids he usually liked to have one last-ditch shot at improving their studies.

Eventually, he figured out where many of them had ended up: Parkway Academy in Miramar, a charter school and target in 2009 of the Florida High School Athletic Association's largest fine — $260,000; later reduced to $118,000 — for dozens of football recruiting violations. Other of Moore's missing seniors had scattered to private schools, most of them McKay-funded. "It's an absolute policy in this state now to move at-risk kids to charter or private schools," Moore says.... The illicit practice even has a name: "FCAT cleansing."

I'll let you read the article itself to learn about how new McKay start-ups go recruiting in economically-disadvantaged urban areas, and how the program is set to expand.

You can bet that the proponents of the Special Needs Scholarship legislation that has cropped up in Wisconsin and elsewhere are not acknowledging these abuses in their materials (for example on this site pushing the Wisconsin version of the bill). I'm perfectly willing to be fairer than that and acknowledge that there are families who had bad experiences in the public schools, who have been able to use these vouchers to move into better private-school situations.

Priority number one, though, should be to FIX the public schools for students with special needs, rather than diverting their funding. And why in the world would Wisconsin want to open the door to the abuses that have become evident in Florida? As a press release from the Survival Coalition of Wisconsin Disability Organizations puts it, "This is not what we want for Wisconsin students with disabilities!"

Current voucher proposals on the table in Wisconsin, which have been crafted without the support of any established statewide disability organization, do not include formal oversight or accountability to families or students. There is no guarantee that a child will receive the required and individualized services they have a right to in the public school. At the same time, voucher programs are expected to drain resources from already strapped public schools which are trying to serve special education students with research-based practices.

The Special Needs Scholarship Program bill in Wisconsin, AB110, which had a public committee-hearing this spring, will receive a new legislative push in the fall. I invite friends of Elvis Sightings to join me in opposing this deeply-flawed legislation -- for the sake of Rose and Joy, and so many others like them!

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.

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!

The World Has a Lot to Learn

So the semester is now underway, Leadership Trainee-hood and all.

My plan is to blog at least once a week on something I've encountered in my MCH-LEND studies. I figure this will be good for a couple of things -- it will help me distill my thoughts, and will (ideally) let my readers in on some of the benefits of the program.

So this week's installment has to do with a brown-bag I attended and a video that JoyDad & I watched.

The brown-bag was a report on the Natural Supports Project, an initiative aimed at finding ways for young people -- middle & high school-age -- "to participate more fully and naturally in school, work, and community activities." While they commented that people who hear "natural supports" tend to think of wooden beams or cotton underwear (!), what the project means by natural supports is people. As in, the people who are around you already, who are naturally a part of your life (i.e. not hired to be there).

The project offered mini-grants throughout the state to schools who created groups where young people, both with disabilities and without, focused on sharing activities and making space for real relationships to blossom. There are some lovely video clips on the site showing some of the results. I think for me the most powerful moment of the brownbag was when one of the presenters was describing the focus groups that the project staff held afterwards, interviewing participants about what worked and what didn't. When participants were asked about what were the barriers to making these groups work well, NOT ONE of them said, "Well, it would have worked if Sally/Sammy weren't so darn limited." Nobody blamed the disabilities, or the kids who had them! Wow.

Well, I had met both of the presenters prior to the brownbag, and so I went up to talk to them afterwards, and ended up going home with an additional resource that they had plugged during the presentation -- a one-hour documentary on DVD called Including Samuel, by photojournalist Dan Habib. Habib has two sons, a typically-developing pre-teen and a elementary-schooler with cerebral palsy. His family's journey so far, and their commitment to include their son in all aspects of life as fully as possible, twines together in the film with the stories of four other families, plus teachers and principals and disability rights activists. Not everybody in the film has had good inclusion experiences in school-based settings -- "Inclusion is an easy thing to do poorly," one school administrator points out -- but the central message is that full inclusion is something that we, as a society, need to learn to do right.

I found myself writing down quote after quote from the video. Here are a few of them:

• "Constantly worrying about Samuel's future isn't the best way to be his parents." (Samuel's mom) -- I hadn't thought about it like that before, but she's right. So many worries, but when they get too dominant, that's no way to make a life.
  
  
• "I can't limit him. Everybody else in life is going to limit him. I can't do that." (Mother of another featured child in the video, a young lad with autism)
  
  
• "All kids -- with the right supports, the right teaching methods, the right technology, can learn the general education curriculum." (This one was either from a teacher or an administrator.) I'm still chewing on the implications of this. A beautiful and radical statement. I want it to be true.
  
  
• "If we want something smooth and easy, then we're in the wrong business." (A principal)
  
  
• "The baby boomers aging, they ain't gonna call it disability, they gonna call it 'old,' but they a$$es gonna need a ramp!" (Disability activist Keith Jones, on assistive technology)
  
  
• "Is there any place in society where inclusion already exists, full-blown? and the answer is yes. It exists within a lot of families." (A principal)
  
  
• "He will teach a lot of people. Which is good, because the world has a lot to learn." (Dan Habib, Samuel's father)
  

There's a local screening of the show coming up soon, with a chance to meet the filmmaker, but JoyDad's got a gig that night. I highly recommend it to my classmates, though! For those not around here, I bet you can get it on Netflix, or check the list of PBS broadcasts -- it might be on TV in your market this fall.

Update 9/11: So this afternoon I came home to a phone message from the school district on my answering machine -- plugging the local showing of Including Samuel & meet-the-filmmaker later this month! This was a blast phone message that went out to all the school families, something that I generally associate with very important happenings like registration in August. Wowza!

Update 9/12: From the comments: Barbara just alerted me to another post on Including Samuel. If you'd be willing to host a viewing party of the film for 10 or more attendees, bop on over by Ellen and her blog To the Max before September 20 and leave a comment about inclusion for a chance to win the DVD plus party-hosting materials! Or just go peruse the post & comments -- lots of perspectives and food for thought.