What Rose Did On Her Spring Break

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

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

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

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

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

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

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

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

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

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

Funny thing about autism insurance, though.

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

Here are the currently-serving Republican state representatives who co-sponsored autism insurance legislation in the Assembly in both 2007 and 2009:

Rep. Dean Kaufert (R - Neenah)
Rep. Alvin Ott (R - Forest Junction)

The autism insurance bills never came to a standalone vote in the Assembly. In the 2007 version they ended up voting instead on an altogether-different (and unacceptable) substitute amendment; the 2009 version was then incorporated into budget legislation so it wasn't a separate vote. So we don't have a voting record on autism insurance in the Assembly. We do know, however, that the following currently-serving Republican state senators voted for autism insurance on 2007 SB178:

Sen. Robert Cowles (R - Green Bay)
Sen. Alberta Darling (R - River Hills)
Sen. Michael Ellis (R - Neenah)
Sen. Sheila Harsdorf (R - River Falls)
Sen. Dan Kapanke (R – La Crosse)
Sen. Luther Olsen (R – Ripon)

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

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

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

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

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

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

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

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

Tell them these things:

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

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

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

4) Make sure to include your full street address with your signature.

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

More opportunities to get your lobby on!

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!

Now They're Coming For Her Autism Insurance

First, they came for Joy's parents' paychecks.
[The increased benefits contribution in the so-called "budget repair bill" is equivalent to a 150% income tax hike for us, both state workers.]

Then, they came for her education.
[The proposed state budget contains close to $900 million in cuts to state aids for public schooling.]

Then, they came for her medical assistance.
[The $500 million Medicaid cut in the budget bill stands to be doubled by the loss in matching funds from the federal government, which would add up to a billion in unspecified Medicaid cuts.]

Now, they're coming for her autism insurance.

I've chronicled on this blog in some detail the years of struggle to force insurers to cover autism-related treatments here in Wisconsin. It took years of patient long-term advocacy (with some good old-fashioned hollering thrown in), but finally in 2009 it became law: insurers in Wisconsin were required to cover evidence-based autism-related treatments.

But now two new bills are circulating, expected to be introduced in the next week or two, that would undermine autism insurance and a whole series of other insurance requirements. Orwellianly-dubbed the "Health Choices and Opportunities" bills, they would set in motion a chain of events that would eventually allow the insurance commissioner to waive the mandates we fought so long and hard to put in place.

The ten hours per week of autism therapy that Joy now receives are covered by our insurance. This is coverage that her (currently-at-risk) Medicaid programs do not provide.

I am feeling bombarded.

And yet I know that as members of the middle class, with two cars and a modest home of our own and a job-and-a-half, we're still going to be relatively OK.

What of those who aren't OK now, or who are hanging onto OK by their fingernails, who will be far-far-less OK if all this passes?

This has all been sprung on the unsuspecting people of Wisconsin in the PAST THREE WEEKS.

Please help us spread the word, and keep us in your prayers.

=====
OK, here's the political action steps, for those who are eligible and feel so moved. I never thought I'd be this openly partisan on this blog. But it's THAT important.

• Join Russ Feingold's Progressives United political action committee (you don't have to live in Wisconsin to do this one!)
  
• Sign up to be contacted to recall Governor Scott Walker once he's been in office for a year.
  
• Visit Recall the Republican 8, a site dedicated to recalling 8 Wisconsin state senators. (I was hesitant about this at first; but they didn't run openly on this extreme an agenda.)
  
• Vote for JoAnne Kloppenburg on April 5 for the Wisconsin State Supreme Court.

Autism Insurance and Mental Health Parity in Wisconsin

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
===========

I recently had a visitor to this site who arrived via the following Google search: "state of wisconsin no cap on autism insurance"

I think this means that it's time to address autism insurance issues again! [Updated 11/13 to add: I am a well-informed lay-person on these issues, but not in any official capacity. (Want to hire me?) My links are good, but my writing does not have official backing or vetting of any organization.]

Here's the very quick recap: Wisconsin's governor Jim Doyle signed an autism insurance requirement as part of the state budget on June 29, 2009; requiring certain insurers to cover intensive-level autism treatment to the tune of $50,000 per year (with age limits and for a total of four years), and post-intensive at $25,000 per year (no age limits).

I've been documenting this for several years along the way, and have a separate page on this site compiling my writings on the subject. Here also are some links with more information on Wisconsin's autism insurance requirement.

• The budget legislation containing the autism insurance requirement (in PDF)
  
• FAQ on Autism Insurance from the WI Department of Health Services (DHS)
  
• FAQ on Autism Insurance (in PDF) from the WI Office of the Commissioner of Insurance (OCI)
  
• WI OCI Rule on Autism Insurance (in PDF) [updated 11/13 to add: this is the final rule, that went into force October 1, 2010]

I'll do another post on how that's all going. It's been an interesting ride. Joy's experience has been relatively smooth, though not without frustrating questions along the way. Other people's experiences have been much rockier.

Now another very fine development is coming down the pike -- with the potential to be an immense help to some Wisconsin residents, but also adding an extra layer of confusion and uncertainty until the details are worked out. This new development involves the lifting of the $50,000 and $25,000 caps.

On October 3, 2008, then-president George W. Bush signed Public Law 110-343, the Paul Wellstone & Pete Domenici Mental Health Parity and Addiction Equity Act. This law is aimed at group health plans with more than 50 employees that provide mental health and substance abuse coverage as part of their benefits. The law aims to ensure that mental health financial requirements and treatment limitations are no more restrictive than what the plan specifies for medical and surgical benefits. There's a fine factsheet at Mental Health America that goes into much more detail.

The Wellstone/Domenici Act of 2008 was initially supposed to take effect Jan. 2009, but the insurance rules were not hammered out and published until Feb. 2, 2010. Here is the link to the applicable rule in the U.S. Federal Register (in PDF). On page 11 of the above-linked rule, under applicability date, it says the rules are effective for plan-years beginning on or after July 1, 2010.

Governor Doyle heralded the federal legislation and rules, and made it very clear his administration's interpretation that mental health parity applies to autism, in a March 1, 2010 press release under the headline:

Governor Doyle Announces Expanded Health Insurance Coverage will Benefit Families with Autism
New Federal Laws Will Further Help Children with Autism Access Full Treatment

[Update 11/13, paragraph & quote added] More importantly and officially, this is also the position of Wisconsin's Insurance Commissioner, as included in the final WI OCI rule on autism insurance, which went into effect this October. On page 4, the rule explicitly includes the position that federal mental health parity applies to autism in Wisconsin:

Although there is no direct federal guidance that autism spectrum disorders are subject to federal parity requirements, it is the position of the Commissioner that parity for autism services does apply to group health plans with more than 50 employees based upon preliminary review of the regulations.

We've been aware for some time that at least one of the large health plans in Wisconsin has been pro-active about lifting the caps for autism insurance coverage -- because if you don't have similar caps for surgical/medical treatment, you can't have them for mental health treatment including autism. For us, that's slated for January 1 when our plan renews.

However, we've heard that other plans are not addressing this, or have been trying to push the issue off till January 2012.

Part of this was apparently being enabled by the State of Wisconsin Department of Employee Trust Funds, the entity that administers health plans for State of Wisconsin employees. Their parameters for plans covering state employees were originally written to allow the caps to remain in place for the extra year. When JoyDad found out about this, the phone-calls and e-mails flew, buttressed by the links from the Federal Register and Doyle's press-release -- making it clear that the effective date needs to be January 2011 for state plans and that Governor Doyle's press release made it very clear that his office interprets the parity legislation to apply to autism.

It might have been coincidence (but I think not) when JoyDad got a communication from ETF saying that, after further review, their legal counsel determined that the autism benefit dollar limit would, after all, need to be lifted for state-employee plans beginning January 1, 2011. The correction has been posted, and here's the quote:

On Page 72, the Schedule of Benefits in Uniform Benefits erroneously lists dollar limits for Autism Spectrum Disorders. The bullet should be removed.

On Page 97, Item 6, Coverage of Treatment for Autism Spectrum Disorders erroneously lists dollar limits for the benefit in the second to last sentence. It should read: “Benefits are payable for intensive-level and nonintensive-level services.

Our insurance plan will be lifting the autism-coverage cap for our (state-government-employee) plan starting January 2011, as they had intended.

All the other insurance plans that compete for state employee coverage will have to do likewise. It's unclear what this may mean for their non-state-employee plans. If your health insurance plan in Wisconsin is not intending to lift the caps when your plan renews, you might want to use information and links from this post to help you advocate with them.

The upshot: Wisconsin state government employee insurance plans, and at least one forward-looking insurance company more generally, are lifting the autism coverage caps as of January 2011.

Other insurance companies are not yet on board.

Still other insurance companies are not included in Wisconsin's autism insurance mandate in the first place, nor by Wisconsin's version of mental health parity. A somewhat smaller set is not even included in the federal version of mental health parity.

And, there's been a big election here. For the past two years in Wisconsin, both houses of the legislature plus the governorship have been in the hands of the Democratic party. In the wake of the 2010 elections, all three have flipped Republican -- and quite hard-right Republican at that. I have been told that the new governor Scott Walker has some insight into, and support for, autism-related issues. I also know that the Republican party has not been supportive of insurance mandates in general. [Updated 11/13 to add the following sentence] And, the Insurance Commissioner is appointed by the governor.

Stay tuned. This story is still being written.

Meanwhile, if any of you know how mental health parity is playing out in other states regarding autism coverage, please share in the comments!

UPDATE 11/11 -- This post originally included a paragraph about 2009 WI Act 218, the Wisconsin Mental Health and Substance Abuse Parity Act, signed by Governor Jim Doyle on April 30, 2010, an act which in general strengthens the Domenici/Wellstone parity act, applying it to smaller companies than the federal legislation. However, WI Act 218 contains an exception for autism. The federal act contains no such exception, so the federal rules still apply when it comes to autism (as Governor Doyle celebrated in his press release).

Oil of the Snake

The deliberately-deceptive "quack" doctor is a well-recognized figure both in history and in fiction, particularly western movies and novels. I have a cousin who wrote a book on three such charismatic con men of the 20th century, including one John Brinkley who promoted transplants of goat glands as a cure for infertility or lost virility (and also ran for governor of Kansas!) One slang term for such characters is "snake oil salesmen."

Ah, but nothing is as simple as it seems. Turns out that the term "snake oil" comes from a particular Chinese medication, a product of the Chinese water snake, that is still used for relief from arthritis and joint pain. The jump from traditional Chinese medicine to association with American quackery may have come about when Chinese immigrant laborers on the Transcontinental Railroad shared their joint pain remedy with laborers of European descent. Funny thing is... for the specific joint pain application, the oil of the Chinese water snake might possibly have certain beneficial properties...

The presenters in the first LEND session on alternative therapies were all students in professions who will be working with children with disabilities some day. They were exceedingly careful about keeping their own language respectful, even when they were obviously skeptical and quoted other organizations who used strong language (such as the National Council Against Health Fraud, on record that "chelation therapy of autistic children should be considered child abuse."

The term "snake oil" didn't pop up until the second set of presentations, which had family-member trainees sprinkled among the presenters -- I think that somehow the family members were a trifle less shy about bringing quack-doctor-history and anecdotes into the mix. Somehow the second session carried more history, more of a sense of the ebb and flow of popularity of alternative treatments and how a single treatment may be sold for a variety of ailments over time.

In fact, that's one of the hallmarks of potentially fraudulent, non-evidence-based treatment: a long laundry-list of what it claims to cure. Good for what ails you!

Among the treatments that were discussed in the second session (hyperbaric oxygen therapy [HBOT], auditory integration therapy/training [AIT], hippotherapy, vitamin therapy for Down syndrome), the laundry-list history came up in relation to HBOT.

Hyperbaric oxygen therapy involves breathing oxygen in a pressurized chamber to increase the blood-oxygen level. It's been around since the 17th century, and is an established treatment for decompression sickness, a potentially-fatal condition that can come about when someone goes too quickly from a pressurized situation (like deep-sea diving or working far underground) back to ordinary air-pressure. Over the years there have been various efforts to link HBOT to other ailments as well. One of the more flamboyant historical HBOT figures was a Dr. Cunningham, who in 1921 built a hyperbaric chamber 20 meters in diameter, in which patients could actually reside. He claimed that anaerobic bacteria were responsible for a whole range of ills from cancer to high blood pressure, and that an oxygen-rich hyperbaric environment would discourage/treat the bacteria. (This was the point in the presentation at which the term "snake oil" was used -- the idea of treating infections caused by anaerobic bacteria in this way may have merit, but that's different from cancer!) Dr. Cunningham was eventually denounced and his massive steel chamber was demolished for scrap metal.

More recently, HBOT has received publicity as an alternative treatment for cerebral palsy and autism. Neither of these applications of HBOT has yet been the subject of a Cochrane Review (a major go-to source for evidence-based medicine). There have been two studies of HBOT for autism led by Dan Rossignol, most recently a double-blind, multi-center trial in 2009 that found significant improvements. The presenters did point out, however, that the improvements were based on parental observation (and as I mentioned about the Elder 2006 study on the GFCF diet, parental reports can be much more enthusiastic than researcher observations.) HBOT is a relatively expensive treatment, $300-400 per session -- and the protocol in the Rossignol study involved 40 sessions.

Another therapy where a family member on the presentation team came down a little harder due to personal experience was vitamin therapy for Down syndrome -- I think the three presenters were all students of genetic counselling. The idea is that the manifestations of Down syndrome, from intellectual disability to facial differences, can be ameliorated by treating the syndrome as a metabolic condition. Some of the substances involved include thyroid supplementation, flaxseed oil, and dimethylglycine (DMG), but the list is long and varied. One of the presenters had family experience with a prominent practitioner of this approach, a Dr. Forrest Warner, known for his travelling clinics that set up in a given city for a day. Parents lined up with their children for a short expensive evaluation in which expensive supplements were recommended, to be taken indefinitely in the absence of any follow-up. Granted that this is a single anecdote, but it obviously had an impact on how the presenter viewed the therapy.

The research on vitamin therapy for Down syndrome is mostly negative, to the point that the National Down Syndrome Society has stated:

The administration of the vitamin related therapies -- e.g. the vitamin/mineral/amino acid/hormone/enzyme combination, has not been shown to be of benefit in a controlled trial, that the rationale advanced for these therapies is unproven, and that the previous use of these therapies has not produced any scientifically validated significant results. Moreover, the long term effects of chronic administration of many of the ingredients in these preparations are unknown. Despite the large sums of money which concerned parents have spent for such treatments in the hope that the conditions of their child with Down syndrome would be bettered, there is no evidence that any such benefit has been produced.

Just at the end of the presentation, someone (presenter or faculty member in the audience, I can't remember?) mentioned that flaxseed oil and DMG have some proponents when it comes to autism as well. [Good for what ails you?]

Next up, auditory integration therapy (AIT), presented by audiology students. Given the alternative status of AIT, I suppose it's not surprising that this was not something the presenters had been exposed to in their studies to this point. In fact, they were having a hard time trying to understand and explain what exactly was involved. The claims for the therapy for autism spectrum disorders involve increased attention span and eye contact, and improvement in abnormal sound sensitivity. The therapy itself involves listening via headphones to specially modulated music 2x/day for 10 days (I believe this was the Berard method.) Cost can be in the neighborhood of $2000.

There's been a bit more research regarding AIT for autism; a 2004 Cochrane Review found 6 studies worth addressing, which ended up measuring a variety of outcomes and reported mixed results. One potential risk may be that the sounds could be damagingly loud, but I don't have a citation for that. The group concluded by citing a technical report from the American Speech-language Hearing Association (ASHA) stating that AIT has not met scientific standards for efficacy and safety and should be considered experimental.

The only presentation I haven't discussed yet was the one on hippotherapy, which (contrary to the word's appearance) does not involve hippopotamuses! "Hippo" is the Latin root word for "horse," and hippotherapy is a strategy that uses horseback riding as part of an integrated intervention program in cases of neuromusculoskeletal dysfunction, a program that may include physical therapy, occupational therapy, or speech-language. The movement of the horse is said to mimic the human pelvic movement of walking. Hippotherapy has a full-blown association (founded in 1992) and a certification board (since 1999) and the presenters' handout listed a whole slew of practitioners in our state. Risks are not extensive -- allergies, and the fact that a horse is a large and potentially unpredictable animal -- and proponents claim gains in patient self-confidence along with the therapeutic gains.

However, hippotherapy is one of the explicit exclusions in our state's recent autism insurance mandate -- along with HBOT, AIT, chelation and special diets, come to think of it. Barbara at TherExtras had some reflections on hippotherapy (to some extent in conversation with me!) a month ago, exploring the ramifications of pushing to get hippotherapy recognized as medical treatment. One of the LEND faculty brought up a related note when she compared the self-confidence gains from hippotherapy to what might result from participation in organized sporting activities.

Thus endeth the roundup of our LEND explorations into alternative therapies. Just to reiterate, every one of these alternative therapies has its enthusiastic proponents and its skeptics. Some have been quite thoroughly discredited, others are squarely in the "need more research" category and that research could tip either way.

One piece of advice that I'd offer for folks gathering information on an alternative therapy. I would suggest searching the following sources for a pull-no-punches skeptical take:

• Respectful Insolence
  
• Quackwatch

Even if they speak of any given therapy in harsh or off-putting terms, it's a useful counterweight to potentially overly-enthusiastic claims. And not all of the therapies listed in these past few posts are evaluated there. (For example, hippotherapy is not mentioned on either site.)

One final note. Back when Barbara (TherExtras) and I first met, we had a conversation about craniosacral therapy. She included in her post the following Bible verse, which had been in the readings at her church that week:

Why spend your money for what is not bread; your wages for what fails to satisfy? -- Isaiah 55:2

That verse was among the scriptures read at my church this past week.

No coincidences!

Hypothetically Speaking

I had the privilege of attending an event the other weekend that gave community members a chance to hear various experts on autism. We heard reports on ongoing research (the science experts). We heard about community resources (the information experts). And we heard about everyday life from a panel of personal experts: three parents of kids on the autism spectrum, and three people who live on the spectrum themselves.

The living-it-themselves experts had the opportunity to pick from a list of what questions they wanted to answer. I was especially interested in what the answers would be to the following questions that were listed in the program:

Do you think it would be a good thing if research found a cure for autism and Asperger's syndrome?
Would you want to be "cured"? Why or why not?

Unfortunately for my curiosity, these were not the questions that the panelists elected to address. I wonder whether the other questions were just more interesting to the panel, or whether there was some active avoidance of these particular questions.

You might say I've avoided these questions on Elvis Sightings myself, actually. Or at least I've chosen other material. The "cure question" is mighty important though -- for how people live their lives now, for how the money flows, for how autism-related policy is crafted, for research priorities, for what choices people may or may not have available in the future.

I'm reminded of my testimony back in 2007 before a state senate committee about autism insurance. The line that got media-quoted went like this: my daughter has epilepsy and autism, and "it's astonishing to us that of these two neurological conditions, one of them is thumbs up and one of them is thumbs down." [when it comes to insurance coverage -- fortunately we won! so that statement is no longer true!]

Now, consider the hypothetical question: "Would it be a good thing if research found a cure for epilepsy? Would you want Joy to be cured?"

Well, heck, yeah! Conditionally, of course -- we'd need to know about risks, and costs, lots of important details. But to the basic question, the answer is a pretty solid YES.

Replace "epilepsy" with "autism," and both the question and answer feel somewhat more tangled.

The rhetoric of curing autism has been deeply entangled with vaccine-autism fears, and a whole slew of non-standard / alternative medical treatments: some relatively benign, some downright scary. When people (parents) are desperate for a cure, and science doesn't have it, the door opens wide for uncontrolled experimentation. And quackery, alas. Very hard to sort out.

And then there are the voices from the autistic self-advocacy community and their allies, people who do not want neurological differences to be viewed as brokenness, but ask instead that the world welcome such differences as part of the beautiful diverse tapestry that makes up humankind. This view envisions a world where we pour the effort and funding that is currently flowing toward cure-chasing into supports and acceptance instead.

One aspect that makes the cure-question less straightforward is the increasing evidence for genetic factors in autism. It's not going to turn out to be anything simple, lots of bits of genes are implicated so far, and the geneticist who came to explain the lastest state-of-the-science to my LEND class last semester left my head spinning. But one consequence of pursuing the genetic angle boils down to what has happened in the case of Down Syndrome: once we could identify it in early pregnancy, people started choosing to end those pregnancies (at a rate of up to 90%). Might that be what a "cure" for autism ends up amounting to?

Another disturbing scenario was explored on a fictional level by Elizabeth Moon in her novel The Speed of Dark, in which the protagonist is on the autism spectrum and an experimental procedure/"cure" for autism figures prominently in the plot. (Fascinating book, by the way.) What exactly would a "cure" do to the people to whom it was administered? What would be the risks -- especially in the early stages of developing such a "cure"? What would be the pressures, and where would they come from? In the novel, the pressure is from an employer. But I could imagine the pressure coming from the funding mechanisms of the health care system, or the educational system, or social services. As in: this treatment is your opportunity to become "normal." This will be your chance to no longer be a burden on society. If you do not take this chance, for the good of society, how can we offer you any further supports or services?

Part of me would very much like to plant my flag proudly in the neurodiversity camp, and proclaim that I don't want a cure for Joy's autism.

But... hypothetically speaking... if we were suddenly offered the choice?

Depends on the conditions. I seriously just don't know.

I do find it interesting, though, that epilepsy and autism (so often co-morbid) elicit such different reactions to the "cure question." That somehow hypothetically desiring a cure for autism might mean I think my daughter is "broken" but desiring a cure for epilepsy just means I have her best medical interests at heart...

It's getting late and I'm beginning to ramble. Please come ramble with me in the comments. Ramble, not rumble, though, OK?

Wisconsin Autism Insurance Rule Published

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
===========

Apologies in advance to my regular readers for yet another policy-wonk, Wisconsin-specific post.

But, this is information that needs to get out there. I'll do a very sketchy first pass at it, and at a later date I will link to the consumer fact-sheets that the Autism Society of Wisconsin (ASW) and other organizations are now feverishly developing.

[NOTE: If you have any specific questions that you would like the factsheet/FAQs to address, please let me know in the comments. I have an "in" with one of the movers-and-shakers who is working on the FAQs, and I've been asked to pass your questions along!]

So, here's the deal. The legislation that passed in the Wisconsin State Budget in June 2009, requiring insurers to cover autism treatment, was just the first step. The second step is that the Office of the Commissioner of Insurance (OCI) for the state had to hammer out the corresponding changes to the insurance rules, on a short timeline. To make this happen, the OCI convened an Autism Working Group, a group of insurance company reps, legislators, advocates, parents, and providers who have been working like crazy since July to define terms for the document that spells out what insurance companies do and don't need to do.

That document is now published, at http://www.oci.wi.gov/rules/0336em09.pdf (note that it opens a PDF document).

The press release announcing the document is at http://www.oci.wi.gov/pressrel/1009autism.htm.

The document is what is known as an "emergency rule." This means that, while it goes into effect immediately due to time constraints, and in this case is good for one year, an ongoing process has yet to take place that involves hearings (at the OCI and likely also before the Joint Committee for Review of Administrative Rules) and a legislative process and further opportunities to monkey with the document before it becomes permanently enshrined in the rules.

However, until that long drawn-out administrative rule finalization process happens, the emergency rule applies, for at least a year.

The emergency rule takes effect November 1, and will start affecting actual insurance coverage whenever the insurer's next new plan-year begins after that date. For many insurers, that new plan-year will begin January 1, 2010 -- so that is when coverage would actually start.

Here are a few highlights (note that this is my own reading, backed by additional conversations with people involved in the process -- but I am no expert. The upcoming FAQ from the ASW & friends will be much more authoritative):

• Wisconsin's Medicaid Waiver program (which is how Joy currently gets her treatment) was the basis from which the Autism Working Group began their deliberations -- the insurance coverage is meant to be reasonably similar on the whole to what people are getting through the waiver right now, though there are plenty of differences, both good and not-so-good.
  
  
• The group did not spell out which specific treatments have to be covered, though behavioral principles are a necessary component. Instead, they hammered out a set of requirements as to what level of published evidence qualifies a treatment to be "evidence-based" for purposes of the rule. The introduction to the document states that this was done such that ongoing research can be taken into account without needing to change the rule. My understanding from outside conversations is that the evidence-requirements were crafted with the intent to include the treatments that are being covered by the waiver program right now.
  
  
• Insurers will be required to cover up to FOUR years of intensive-level autism treatment (to the tune of $50,000 per year as stated in the legislation), as opposed to the up-to-three years covered by the waiver program. However, any intensive-level service that has already happened when insurance coverage starts, whether under the waiver or out-of-pocket, counts toward those four years.
  
  
• (update to original post) As stated in the legislation, insurers are also required to cover what they're calling "post-intensive" treatment to the tune of $25,000 per year. This is autism-related treatment for people of any age. Since I am not as familiar with post-intensive services under the waiver, I can't make a good comparison -- but I think that the post-intensive waiver coverage is somehow time-limited (certain ages? certain number of years?) and the post-intensive insurance coverage, as I understand it, is not.
  
  
• Those who have been reading Elvis Sightings for a while may remember my ranting and advocacy around the waiver program's [in-my-view-unreasonable] insistence on having all therapy take place in the home (as opposed to including other natural settings). Good news -- the language in the new rule only requires a majority of the treatment to take place when a parent is present, and that it should be "provided in an environment most conducive to achieving the goals of the insured’s treatment plan." Can you say, "Joy's awesome daycare at Lynda's place"? Sure, I knew you could! Woo hoo!
  
  
• Another change from the waiver program, this one not so fortunate: under this rule, insurers are not required to cover therapists' travel-time. I do not know how this will work out in practice; some service-provider agencies may choose to "eat" this cost in order to continue to be able to hire therapists...
  
  
• While there is not a list of specifically included therapies, there is a specific list of exclusions. Among the therapies NOT covered: acupuncture, hippotherapy, auditory integration therapy, chelation, cranial sacral therapy, hyperbaric oxygen therapy. (See the rule document for a complete list.)

Well, that's a few highlights from my perspective.

There are many questions yet to be answered, and most caseworkers and providers and insurers haven't got these answers just yet... will my particular insurer cover my particular therapy provider? How does my Katie Beckett (non-waiver) medical assistance coverage play in? Does our family still keep our county caseworker if the waiver was where that relationship started? What about co-pays & deductibles? Et cetera.

We just don't know yet. But the answers will have to be worked out soon.

Joy's particular service provider ("Agency 2") has recommended that current waiver-based clients with insurance contact their insurers. Our plan is to make that contact and ask the insurer the question: how can we proceed in order to avoid any kind of gap in treatment coverage?

Stay tuned.

(P.S. My thanks to JoyDad for helping me sort out the administrative rule-making process!)

My Brain is SO Full.

The past two days have been amazing.

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

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

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

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

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

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

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

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

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

My brain is so full.

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

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

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

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

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

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

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

Forward! (Autism Insurance in Wisconsin)

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
===========

We did it, y'all!

On Monday, Wisconsin's Governor Jim Doyle signed the state budget into law, including a requirement for insurance companies in Wisconsin to cover autism-related treatments. Until now, insurers in this state have been free not to cover autism, and to deny any service that might be autism-related.

Intensive-level therapy for children with autism in Wisconsin has been provided through a Medicaid waiver program, whereby the state & the feds together fund up to three years of intensive therapy (20+ hours per week) with the possibility of a number of years of post-intensive therapy. The autism diagnosis plus a certain level of disability qualifies a child for the program, regardless of parental income (though families do pay a small monthly fee that depends on income). The state budgets for a certain number of new clients in this program each year -- lately that level has been set at 200 new kids a year.

Unfortunately, the need has been greater than the waiver program could handle. A waiting list formed, and grew. In Joy's case, the time lag between her diagnosis at the end of 2006 and when her number came up on the waiting list was 18 months, plus another month until the first therapy (so the agency could assemble a team). And the waiting list continued to grow.

This was the setting in which the autism-insurance movement swung into gear here a few years ago -- if insurers could be required to pay for these therapies, the Medicaid-waiver portion of the program could focus on the uninsured, and more children overall could receive treatment. The legislation ended up broader than just the needs of children, fortunately, also applying to autism-related treatment for adults.

It took lots of advocacy and meetings and lobbying and rallying, lots of maneuvering and persistence. And now the autism insurance requirement is law. Wahoo!! Big happy thank-you and cheers to everyone who helped bring this about!

So. What now?

Well, nothing will change immediately. The next step is for the Office of the Commissioner of Insurance (OCI) to hammer out the specific rules for the insurance companies to implement, based on the law. The timeline for them to do so is five months. Then the insurance companies have to issue their new plans based on the rules. For state workers like me & JoyDad, the new plans should go into effect at the start of 2010.

Coverage must be at least $50,000 for intensive services (evidence-based behavioral therapy) per year, $25,000 per year for post-intensive (i.e. anything afterward, still must be evidence-based, so no coverage requirement for such things as hyperbarics and certain biomedical interventions).

As I understand it, the hope for how this is going to go is that the insurance companies will contract out the providing of the therapies to the agencies that are currently providing them under the waiver program.

I was initially concerned about a couple of things for our particular situation. One is that our HMO has been very particular about not wanting to cover anything not offered by their particular network. However, since the HMOs haven't been covering the therapies, that means the clinics haven't been offering them, which means they would have to totally start from scratch in developing such therapy programs, staffing them, etc. Contracting it out should be a much more attractive option, at least initially! (Conversations are underway, or so I hear.)

Meanwhile, our own Agency Two (which provides the baristas that serve up Joy's House Blend therapy) has a PhD-level therapist on the committee that's helping to formulate the Insurance Commission rules. This eases my mind about another worry, which was that the language in the law about "evidence-based behavioral therapy" might be interpreted as code-speak for "Applied Behavioral Analysis as practiced in Lovaas-protocol discrete trial therapy". Which is the protocol provided by Agency 1, the service-provider that we... umm... decided against. However, therapies that have a more relationship-based focus can also claim a legitimate place under the behavioral-therapy umbrella, as they successfully did when decisions about the waiver program were being made. And Agency 2 is right in there to help make those decisions fall the right way when it comes to autism insurance in Wisconsin.

It's pretty clear that families who have insurance will be required to make the switch, and cannot choose to stay on the waiver program. I wonder if this will turn out to be a costly deal for families with high-deductible policies? I was also wondering if we'd still be able to keep Joy's medical assistance at all, which pays for the diapers that aren't covered by our HMO -- it seems that we can at least hope not to get kicked off that, since the determination of disability for Joy should still apply.

Ideally, if everything comes up as sweetly as possible, we'll be able to stay with Agency 2, keep MA, and lose the ridiculous waiver-program rule that restricts the therapies to the home environment, so that perhaps we'd be allowed to have therapists work at Joy's daycare (as Birth to 3 and school district therapists have no problem doing.) We shall see. No guarantees on any one of those hopes, at this point.

There's a lot left to be worked out. And after the rules are in place, and the new insurance plans based on those rules take effect, I imagine things will get very hairy for a while as the autism-therapy service providers have to quickly staff up for an influx of new insured-clients who were either previously sitting on the waiting list, or had given up on the state program altogether but now will want to take advantage of the insurance coverage. I also don't know how the state is going to count the "waiver slots" that open up when people like Joy move over onto insurance funding. Will "her" slot come open in addition to the 200 new ones for the new fiscal year, or will it be one of the 200, which the state parcels out at an average rate of about 4 per week?

For all of the potential drawbacks and questions, I have no question that this was the right thing to do. Ultimately, more people in Wisconsin, children and adults both, will get the autism-related treatment they need. It's good to have something to celebrate, in a very difficult budget.

As Wisconsin's state motto says: Forward!

WI Autism Insurance - Excellent News!

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings

Insurance coverage for autism in the state of Wisconsin moved a big step closer to becoming a reality last night.

I've been keeping up a running update on the progress of the initiative at my February 19 post, which was when JoyDad did his public hearing testimony.

Recap in a nutshell - this is now the second biennium in which autism insurance in Wisconsin has made it to the stage of serious legislative consideration. In 2007 it was stymied in the Wisconsin Assembly, which then had a Republican majority, at the eleventh hour.

This year, after the 2008 elections which left both the Wisconsin Senate AND Assembly with Democratic majorities (plus a Democrat for a governor as well), the measure was introduced early in the session, as AB15 in the Assembly and SB3 in the Senate.

Both measures were referred to committee, and public hearings were held. The Senate committee recommended the measure back to the Senate unanimously. The Assembly committee should have had the votes to pass it as well, but were held up by one Rep. Bob Ziegelbauer (D), who had some concerns with the language of the bill.

Then the measure was taken out of those committees' purview altogether, and went to the Joint Finance Committee, where the ugly details of the state budget are being hashed out as I type (Wisconsin, like every other state, is being socked by the economic downspiral). The JFC is moving quickly to make the sausage, packing multiple motions into large omnibus packages.

One such package, labeled as Motion 700, passed last night just before 10:30pm. The autism bill is included, on pages 20-22.

This will now be part of the budget bill that goes back to both houses, rather than continuing as the separate measure that was AB15/SB3. With the support of the governor and the majority leadership in both houses the way they stand, it would be very difficult to kill the autism insurance provision now, given the support it enjoys from the leadership in both houses and from Governor Doyle. From reading the live-blogging at the WisPolitics budget blog, it looks like the (failed) minority-party challenges to the motion were all about other things, leaving the autism provision alone.

The optimistic plan is to have a final budget passed by sometime in July mid-June, such that it can be signed by the governor and in force by July 1. Then again, this has been the hope every time around, but the success rate at keeping to the July 1 deadline has been abysmal. I will continue the picky updates, which I imagine are less-than-fascinating to many of my readers, simply because my Google search records indicate that people are coming to Elvis Sightings to find information on autism insurance in Wisconsin, and I think it's important to be able to trace the progress SOMEWHERE in exhaustive detail.

Big thumbs up this morning. I think it's gonna happen.

Links to prior related posts:
3/15/2009: WI Assembly Hearing on 2009 Autism Insurance Bill AB15
2/7/2009: More About Wisconsin Autism Insurance Legislation
1/11/2009: 2009 WI Senate Bill 3

WI Assembly Hearing on 2009 Autism Insurance Bill AB15

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings

The hearing on AB15, a bill to require insurers in Wisconsin to cover autism treatments, is going on right now (morning of 2/19). (Actually it's on the substitute amendment offered yesterday, Feb. 18, to bring the WI Assembly version in line with the WI Senate version, about which I blogged earlier this month and which sailed unanimously through committee and is now awaiting scheduling in the Senate).

JoyDad is there to testify. I reviewed his testimony early this morning -- it looked good, and much better thought out than my extemporaneous testimony on the same issue two years ago! But I had Joy with me then, an advantage he doesn't have since she's getting a House Blend therapy session right now. So maybe it all evens out.

Good luck, JoyDad! Will update later.

Update as promised:

Testimony is done! Wow, marathon hearing. JoyDad had to wait a long time to speak his piece, and the hearing went on for several hours after that. Between 5 & 6 hours, maybe? Which is good, because it means a lot of people showed up. It appeared that they were all speaking in favor, which seems to be the pattern, though I only listened to parts of the hearing via streaming video. I will post the link when they get the video back online. (UPDATE: WI Assembly Committee On Insurance hearing video on AB15 here.) Anyway, the opposition doesn't show up, just turns in written testimony and thereby avoids meeting the passion of the parents face to face...

JoyDad would have preferred to testify without having had to wait so long, getting more keyed up by the minute. He says he tried to speak slowly, but went faster than he'd planned. That's OK, they had to cut off other speakers who went too long! One surprise was that JoyDad didn't get any questions from the legislators. He'd been rather looking forward to going head-to-head with a certain Assemblyman, but the guy was out of the room at the time.

In honor of JoyDad's efforts, I'm providing a link to an MP3 of a song by his band.

The name of the song is Testify! Not only is the title beautifully appropriate for the day's activities, it's also a fine running tempo for me. As the lyrics say repeatedly, Woo-hoo-hoo!

(If you'd care to buy the album, you may do so online at CD-Baby. Thus endeth the advertising plug.)

Further Update (March 5): The Autism Society of Wisconsin has announced that the Assembly Committee on Insurance will vote on AB15 on Thursday, March 12. The measure is expected to pass, and would then be forwarded back to the full Assembly for scheduling.

Further Update (May 7): The committee vote was cancelled and has not been re-scheduled. Someone on the committee is uncomfortable about something. The holdout is probably a Democrat, because Democrats have the committee majority and the Democratic chair had indicated the votes were there to pass it, so a Republican's opposition wouldn't have held things up. Rep. David Cullen of Milwaukee, Rep.Cullen@legis.wisconsin.gov, is chair of the committee. A bit of citizen input to Rep. Cullen and other members of the Assembly Committee on Insurance would be apropos!

And yet a Further Update (May 14) -- According to Wisconsin Autism Insurance Now, the autism insurance bill has been referred to the Joint Committee on Finance (which I think means that it's back out of the hands of the Assembly Committee on Insurance, so Rep. Ziegelbauer's misplaced concerns will no longer be the determining factor...) The site goes on to say, "We have been told by leaders in both houses that the bill will be considered in the context of the state budget -– either included in the state budget or accounted for and considered immediately after the state budget."

Updates R Us (May 29) -- The Joint Finance Committee last night passed Motion 700, an omnibus set of budget provisions that includes the autism measure (on pages 20-22). This will now go back to both the WI Assembly and Senate as part of the budget bill, no longer as AB15/SB3. With the time-pressure to get the budget through, and as a tiny part of a much larger whole, and with the support of the leadership of both houses plus the governor, it would be a whole lot harder to kill at this point. Apparently nobody even TRIED to kill it last night, having bigger fish to fry -- but all of the minority party objections were over-ridden along party lines anyway. I've made this all into a separate post too, but will continue to update here so it's all in one place for my Google visitors (welcome!)

More About Wisconsin Autism Insurance Legislation

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
===========

I got a whole bunch of search engine hits yesterday looking for information about the pending legislation for autism insurance in Wisconsin, due to my post last month about the bill introduced in the Wisconsin Senate (SB3). There was a segment on the show Here and Now on public television last night, and other news coverage I'm sure. Things seem to be happening fairly quickly.

So, here's what I know.

The original author of the bill, Senator Judy Robson, introduced a substitute amendment yesterday (Feb. 6), with some added particulars. In my last post, I mentioned the lack of a dollar cap. That has been addressed in the new version:

The coverage provided must be at least $60,000 for intensive−level services per year per insured, with a minimum of 30 to 35 hours of care per week for a minimum duration of four years, and at least $30,000 for post−intensive−level services per year per insured. Beginning in 2011, the minimum coverage monetary amounts will be adjusted annually to reflect changes in the medical consumer price index.

Another shortcoming of the previous version of the bill was that it did not specifically mention speech-therapy or occupational-therapy services, a common insurance exclusion. The new version does specifically include these.

There is still no age cap mentioned -- this is deliberate. The intent is for insurance coverage across the lifespan. Apparently there were shenanigans in Texas after the law was passed and it went to the insurance commissioner to hammer out the administrative details, at which point an age limit was imposed. Ugly result; I understand, though, that in this state the Autism Society of Wisconsin is on the case.

The expectation for this framing of the autism insurance proposal is that it will result in approximately 1/3 of the kids currently covered by the Medicaid waiver in Wisconsin (the intensive autism therapy program that provides Joy's House Blend) being covered by insurance instead. Very helpful for the wait list!

There is a public Senate Committee hearing on the bill this coming Monday, Feb. 9, at the Capitol in Madison at 10am. JoyDad and I are unfortunately tied up at work, but I hope there's a good showing.

Here's a link to more information about the progress of Senate Bill 3 (the legislative history).

The companion bill, introduced in the Assembly, is Assembly Bill 15.

If you would like to sign up for e-mail updates on these bills (or any Wisconsin legislation), you can do so with the Wisconsin Legislative Notification Service.

You can also check the Wisconsin Autism Insurance Now site, which does a good job with talking points, but perhaps not so good with up-to-the-minute updates. What I've written here is, as of today, much more current than what they've got up.

I think it's time for Wisconsinites to start writing letters / sending e-mails / making phone calls to state representatives...

I should perhaps also mention that there's a Republican response out there as well. This seems to entail throwing just enough money at the Medicaid waiver program in a one-shot pacification maneuver to get people to stop talking about insurance, without any ongoing support for future years or for what happens after the intensive phase is done. Weak.

Last time I posted an outdated link to a map of autism insurance initiatives. Here is one from Autism Speaks that is much more current, and allows one to sign up for e-mail alerts in their own state.

Money is tight, in Wisconsin and everywhere. But I think we've got momentum this time.

Update Feb. 12: It looks like the Senate committee hearing on Monday had good attendance and lots of personal testimony. For the record, here is a link to the streaming video of committee proceedings. The committee voted unanimously the following day to recommend the bill back to the full Senate for passage. Bipartisanship, can you even believe it?! SB3 as amended is now awaiting scheduling for a Senate vote.

Update Feb. 19: See more recent post about the hearing on the Wisconsin Assembly version of the bill, AB15.

2009 WI Senate Bill 3

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings
===========

Hard to believe, but insurance coverage for autism is at the top of Wisconsin's 2009 legislative agenda!

Note: I've updated on this issue as of February 7.

When Joy was diagnosed with autism in December of 2006, we began to learn some unfortunate facts about developmental disability. One particularly disturbing issue we began to hear about was how health insurance often treats autism. As in... it generally doesn't, if the companies can at all help it.

One historic artifact is that health insurance has covered mental health issues only reluctantly, and to lesser degrees than physical health (as if they weren't related.) Since autism is technically a mental-health diagnosis, that puts it on the shaky side of insurance.

I should note here that our particular insurance policy has generally done very well for us. We have not been denied any physical care for Joy on account of her autism. We even got them to cover some speech and occupational therapy during the one summer when Joy was too old for the county's Birth-to-Three services, but the school district wouldn't pick her up because it wasn't September yet. They also covered follow-up visits to the developmentalist/autism-specialist who made the initial diagnosis. That was it for services directly aimed at the autism, however. We haven't even really tried to get anything else covered. And the horror stories are out there. I also hate to think of what would happen if we ever had to switch insurances...

Fortunately, we discovered, there's been a movement afoot nationwide among the states, to highlight autism as a condition that MUST be covered. There's a neat little map mash-up at Autism Bulletin that showed the situation in 2007; more states have signed autism-insurance mandates since then, including South Carolina whose legislature over-rode the governor's veto to make it so!

In Wisconsin, the governor and the state Senate were supportive. The motivator behind the proposed autism insurance legislation in Wisconsin was the state's intensive autism services, which Joy is receiving now. (I've got a whole list of posts on that to come; stay tuned!) Wisconsin has a lovely program via a Medicaid waiver that offers up to three years of intensive therapy for kids on the autism spectrum who are sufficiently disabled to qualify. The budget dictates how many children get into the program each year, alas, and the waiting list is out of control. Joy began receiving services a year and a half after her diagnosis, and you can believe we were not dragging our feet in trying to set it up! -- and the list has only grown since then. The budget strategy went, if only insurance would pick up at least part of that expense, we could stretch the state dollars further, serve more children, whittle down that waiting list. In the process, they could also help adults with autism who get slammed by insurance exclusions.

So we started advocating. We got friends and family to write letters, I attended a rally at the state Capitol and talked to staff in various legislators' offices, I even testified at a state Senate committee hearing on the measure, and got quoted by a couple of news organizations! Joy was so cute at the hearing. I started my testimony with her on my lap, but she started telling the legislators "bye-bye" before I got 30 seconds into my spiel!

Well, the measure dragged and dragged. First they tried to put it into the budget, a long contentious process and we set the record for late state budgets that session. Then it was introduced in the Senate, then the committee hearing, then the Assembly got a chance to drag its feet. Rumor was that there were enough votes in the Assembly to pass it (it passed the Senate with ease), but the Assembly leadership was dead-set against bringing it to the floor. Eventually they brought a substitute amendment that looked like it was going to throw state dollars at the waiting list, but that they knew wouldn't pass. And the issue was officially dead for the session. For timeline context, my testimony was in May 2007; the Assembly 11th-hour shenanigans that killed the bill for the session were in March 2008.

Since then, there's been an election, and it has changed the playing field considerably. Wisconsin now has the same party (Democrats) in the governorship and in the state Assembly and state Senate -- in other words, the Assembly majority changed hands.

The autism insurance bill was introduced in the state Senate this past week. It's Senate Bill 3, right at the top of the legislative agenda.

Elections matter!!

I do wonder whether the bill will make it through in its current form. It's pretty broad right now -- it speaks to autism, Aspergers, and PDD-NOS, and defines the therapies to be covered this way:

if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic.

Definitely aimed at the ABA/DIR/etc. kinds of services that the Medicaid waiver covers. The bill also does not have a dollar-cap written in, as far as I can tell, the way some do (some states make insurance plans provide up to $X of ABA in a year, for example).

I think the loophole for our particular insurance and Joy's intensive services is going to be that the services Joy is receiving are not "in-network." I'm sure there will be plenty of other ways for insurance companies to limit their obligations. The real details and limitations of whatever passes will have to be hammered out in a rule-making process led by the state's insurance commissioner, which could take up to a year in itself. Meanwhile, who knows what will happen with the Obama administration's health-care initiatives! The system could look very different in a couple of years.

Still. This insurance-coverage approach is one that we support, and it's exciting to see it moving forward. After all, that's Wisconsin's motto: "Forward."

Intensive Therapy: Out of the Starting Gate

Finally, finally! Yesterday morning Joy had her very first session of state-funded intensive autism therapy, almost nineteen months to the day after receiving the diagnosis of autism (just before Christmas, December 2006).

The first time we visited her primary care pediatrician after the developmental pediatrician made the pronouncement, she told us that we were fortunate that Wisconsin has such a fine program for intensive autism therapy.

Well, yes and no.

There's indeed a fine program in Wisconsin, funded in part by a special federal waiver that allows Medicaid funding to be spent for early autism therapy, without requiring that the families be in poverty to qualify. Each qualifying child can get up to three years of intensive therapy, with ongoing "post-intensive" dollars to follow. The problem is that the funding has not kept pace with the demand, and the waiting list is growing to frustrating proportions.

There's a fair amount of agreement that the gold-standard in inter-personal therapy for autism treatment involves 30+ hours of therapy per week, and the earlier you get started, the better. There are a number of intensive-level therapy programs & approaches out there, and our county offers a choice between two agencies that operate with the Medicaid waiver funding. More about the choices and their content later! What seems to be the commonality across the various philosophies is the many many hours of one-on-one face time, with lots of interactions and lots of documentation. And ideally, the therapist should be the most interesting and engaging thing in the room.

As you can imagine, this sort of intensity isn't cheap. Out-of-pocket, it's up to $60,000 per year, out of reach for most middle-class families unless you double-mortgage your home and drain your retirement funding and fundraise like crazy. We chose not to do so, instead continuing to pursue what therapy we could get for Joy through the Birth-to-Three early childhood program, and more recently through the school district.

I started making calls on the very day Joy got that autism diagnosis, knowing that the wait was long and getting longer. It was nearly two months before we waded through the initial paperwork and got a visit from a county worker to make sure that Joy looked like intensive-therapy material, and then two months more before they got all that paperwork processed and got her officially onto the waiting list, April of 2007. And then the months started clicking by. When she'd been on the list for a YEAR, the county sent someone out to "re-screen" her and make sure that we hadn't had some sort of magical recovery...

In the meantime, we've gotten involved in advocacy, both for Joy's sake and for others coming down the pike onto that awful waiting list. One of the ways that Wisconsin has attempted to rescue the intensive-therapy program without directly ponying up the money it would take to get everyone off the waiting list and into the program, is to require insurance providers to pick up some of the therapy. Currently, insurance providers in Wisconsin are NOT required to cover anything autism-related, so they don't. This year's attempt to make the insurance companies do the right thing went down in flames at the end of the legislative session, when the leadership of the Wisconsin Assembly used a weaselly substitute amendment to keep the autism insurance bill from coming to the floor (where it probably would have had the votes to pass!)

November's elections are very important...

Anyway, we're very happy to have the therapy available, and very happy to have two fully-funded choices. Not everybody has that advantage, and we're well aware of it. We're cranky beyond belief, however, about that waiting list. Talk about wasting public funds, letting the precious optimal months slip by!

We'll continue with the advocacy, of course. But now it's our turn for the therapy, and we're going to do our best to make sure that it's as helpful for Joy as it can possibly be.