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
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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!)

Positive Stories

Last night we had a team meeting at our house, one of those delightful gatherings that gets all (or almost all) of Joy's baristas (intensive autism line therapists) in one place at one time, together with me & JoyDad & Lynda the Wonder Woman daycare lady.

These are remarkably productive meetings when we keep them on track. The biggest thing that threatens to derail them occasionally is that everybody gets too involved in the very first agenda item...

The first agenda item is positive stories.

I love starting meetings this way, and I love the fact that people have SO many positive Joy-stories to tell, that it threatens to take up too much of the meeting sometimes!

Last night's positive stories included:

• Joy ate an entire helping of cut-up spaghetti & red sauce -- with her fork. With almost no guidance.
  
  
• When one of her baristas was playing pillow-squish game with her, and saying a big ol' "Squish!" each time the pillow came down, Joy several times echoed the unusual sound "KW".
  
  
• At daycare, Joy was in her chair at the table playing with a puzzle, something that's usually not a big turn-on for her. Another child decided to be "helpful" and came over to take over, pulling pieces out of Joy's hand and putting them in the puzzle. And Joy, instead of checking out on the interaction, got mad, tried to hold on to the pieces, even succeeded in getting some back!
  
  
• Joy imitated monkey-noises, "oo-ahh-ahh-ahh".
  
  
• The "high-five" that we've worked into Joy's greeting and bye-bye routines has caught on like wildfire. It's such a charming way that she can interact that feels "normal" to people, and they respond with such delight. She high-fived the sheriff's deputy who came to change her Project Lifesaver battery, and a whole bunch of folks at church. Plus she high-fives Rose, who is a model of patience in holding her hand at the ready and waiting for Joy to come through with that high-five.

Once we've got a good foundation of positive stories to build on, it's ever so much easier to bring out the challenges, like how do we deal with Joy's grass-pulling and rotten-apple-eating in the yard? (we're going to try to provide stretchy-sequin bands, which have helped at daycare) or how do we deal when she's pingpong-ing around and won't slow down long enough to interact (sometimes it's calming to get her sitting in the high-chair, notched down to its lowest setting near the floor.)

Positive stories. Didn't I just mention recently how much I like them?

P.S. Here are some positive stories from me. This morning I went running again (OK, alternating walk with slow-jog) for the first time since I broke my toe last month. It felt fine. And, I interviewed yesterday for the university program I was talking about the other day, that would take my plate-spinning to a whole 'nother level. I don't think I've ever been so relaxed and confident in an interview before. The program feels RIGHT for me. Now the committee just has to agree! I should find out Thursday which way the decision tips.

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
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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!

Trade-Off

Rose and I went to a neat event at her elementary school last night, a Fun Walk/Run for the kids that was also a PTA fundraiser. There were T-shirts, and race numbers, and goofy warm-ups with one of the first-grade teachers, and picnicking on the lawn, and desserts to share, and the district superintendant & others were handing out little stretchy-bracelets to the kids for every lap completed. The weather was perfect, the turnout was huge.

And, I got to spend time talking with other parents I hadn't seen in a while! Two families in particular were once part of our regular routine but not so much lately -- one family for regular playdates, another we used to encounter last summer at Joy's swimming class. Both those evening time-slots have now been filled with intensive autism therapy for Joy. In fact, Joy was therapy-ing at home instead of Fun-Running and picnicking with me & Rose.

It's a trade-off. Intensive therapy fills a lot of time that we used to have available for other things.

On the other hand, if I'd had Joy at the Fun Run, I wouldn't have been available to catch up with the other parents, because I'd have been Joy-minding...

I also put together in my mind something that I'd not been tracking with, for both these families. They both have older kids in Rose's grade, and both also have younger daughters a little younger than Joy.

Both those younger daughters will be starting kindergarten at the same time as Joy, since we're holding off on kindergarten for another year!

I think I need to make better efforts to keep Joy well-acquainted with these two classmates-to-be. And also to make sure we bring Joy to next year's Fun Run. Wonder how many laps she'll be willing to do, if I go with her?

Bad Form

I wonder how many trees had to die to create the forms that I'm supposed to fill out this month?

Forms, forms, and more forms!!!

The ones for Rose have been the big volume lately. We signed her up for a new summer-care program, so they needed umpty-something different forms filled out, from the emergency contacts to the vaccination dates to the contract to the field trip permission et cetera, und so weiter. I think I had to put all our names, address, phone and e-mail on every single form. Well, OK, maybe no e-mail on the form about the preferred brand of sunscreen and bug spray. Sure felt like it though.

Then there are the forms from the elementary school. Tell us about Rose so we can put her in a well-balanced class next year. Buy petunias to support the PTA. Scholastic Books order form. Sponsor sheet & t-shirt order form for the all-school walk/run in May.

And we signed her up for piano lessons again for next year. And I think there are a few more forms lurking in a pile that I'm forgetting about. If not, I'm sure some will come home in her backpack now that spring break is done.

Of course we can't let Joy get away without paperwork!! The contract for the daycare renewal at Lynda's is an easy one, I just haven't gotten to it yet. The one I'm actively avoiding at the moment, though, is the re-registration for medical assistance. Not that it's a particularly long form or anything. It's just... well, kind of a mess. It appears that they're trying to use the same ridiculous form to accommodate everyone from preschoolers with special needs to economically-disadvantaged applicants to people with work-related disabilities -- and for first-time applicants as well as renewals. Sure, THOSE are all going to need to answer the same questions. These government-program-forms give me the willies anyway. As confusing as they are, I have this icky fear that I'm going to accidentally mis-interpret something, give the "wrong" answer, and *POOF*!! Joy's future eligibility will go up in a puff of oily smoke, and I'll never figure out the proper incantation to bring it back.

Silly, I know. Right?

And all of this is just a warm-up for the Big Ugly later this spring, the annual re-certification or whatever the heck it's called, for medical assistance on the whole and the intensive autism program in particular. The one where I get to ponder and enumerate all of Joy's deficits, failings, shortcomings and abnormalities in excruciating detail, to prove that she's wretched enough to merit the help. (But simultaneously demonstrate that the program is doing enough good to be worth continuing.) Goody, goody.

It's just not right. Won't somebody please speak for the trees?

Updates and Downdates

Doesn't it always seem to be a bit of cognitive dissonance when an "economic UPdate" comes on the TV or whatever, and then the news is all about how things are spiraling DOWN?

Anyway. We've got both ups and downs here, so we got both updates and downdates.

UPDATE: Rose is feeling much better. She went to school on Monday, only a little worse for the wear (achy muscles from all the hurling). Cute Rose story from yesterday: we were in the car on the way home from piano lesson and she asked me, "Did men always used to have to have short haircuts?" I started an answer about how it wasn't that you had to have short hair, it was just...

"Tradition!" she supplied from the back seat. I chuckled and told her what a grown-up girl she was, that that was exactly the right word.

"Yep," she replied smugly. "I'm a human dictionary!"

That's my girl! A chip off the ol' OED!

UPDATE: Joy's "more" sign has persisted this week. She's not using it at every opportunity, but we're still seeing it occasionally. She also seems to have retrieved her old sign for "all-done," which consists of self-applause. Which makes sense, because what do people do when you finish an achievement? They applaud and praise you! She used it remarkably well at Tuesday lunch, when I was around the corner as she finished the food she wanted to eat. I heard the clapping and came running, and she was absolutely telling me she wanted to be done. And then I told her that she needed to eat a few more bites of ham before I'd let her get away with being "all-done." Heh. Little stinker.

DOWNDATE: Sigh. This one harkens back to my Rules post the other week, in which I ranted about the ridiculous conditions and hoops to jump through to get 3 months worth of House Blend therapy (at 4 hours per week) at our fabulous daycare. Our daycare lady, Lynda the Wonder Woman, provides just an ideal setting for therapist work, and is a full member of our team. The daycare setting provides Joy with the opportunity to work on generalizing goals that she's been working on at home, into her "home-away-from-home" setting where she gets to interact with more peers.

Well. The response came back last week.

They said that in the next 90 days, we could have FOUR of our 4-hour therapy weeks. We're to sprinkle them throughout the 3 months as we see fit, but the emphasis should be on training Lynda so that we can fade out the need to have the therapy at the daycare at all.

This is not a decision made with Joy in mind, or with any clinical basis in the situation. This is a bean-counter decision, made in service of an apparent crackdown on therapy hours outside of the home in general.

ALL kids need structure, and stability, and routine. Kids on the spectrum have an even greater need for structure, and stability, and routine.

So, let's jazz things up at daycare, shall we, with 4 hours of therapy in week 2 of twelve, and then we'll take two weeks off, and then we'll have another week with 4 hours of therapy, and then we'll take three weeks off...

You see what I mean. That kind of approach isn't particularly kind to barista-schedules either, might I add.

It looks like our only sensible option is to take all four weeks consecutively, starting next week. And then we're out. No more therapy at daycare. No further venue of appeal, other than the committee that handed down the decision to begin with.

Well, our particular case might not be appeal-able, according to the rules that are apparently being re-written and tightened as the months go by. But when the rules are THAT BAD, maybe someone needs to do something to get those rules changed in the right direction....

Will keep you posted. If I need help, I'll let you know that too. Not quite sure what form this will take yet.

A House Blend Session

I think we've got enough layers in place for this to make some sense.

Besides, we had rather an amazing session with Joy's Tuesday-afternoon barista, that I'd like to share.

This was a 3pm-5pm afternoon session; the House Blend sessions are two hours long, minus 15 minutes at the end for record-keeping.

We have a consistent routine to begin and end the sessions, something that started all the way back with one of Joy's first Birth-to-Three therapists in 2006. At the beginning of the session comes a song to the tune of "Goodnight, Ladies" that goes:

Hello Joy,
Hello Joy,
Hello Joy,
It's time for us to play!

At the end of the session comes a song with three verses (I don't know a name for the tune): one verse for clapping hands, one for stomping feet, one for waving bye-bye. We have tiny reminder-notes taped to the outside and inside of the front door to help make sure that the songs happen.

The timing of the afternoon sessions is such that it generally starts with snack.


Joy has become a pro at yanking and handing over the photo cards. In fact, there was one snack over the weekend where we wanted to serve her something that wasn't on the photos, so we didn't bring the book out, and she was mildly cranky at not having her useful tool available! (She wasn't upset enough to refuse the tortilla chips... But I digress).

So after a suitable run of repeated photo requests for small servings of bunny-cracker and apple and milk, it was over to the living room for some jumps and pillow-squishes. I think that's all they had time for before our playdate guests arrived!

Since I have to be at home for these afternoon sessions, I'm no longer available to pick Rose up from school. Instead she comes home with neighborhood friends, a lovely family with a Rose-aged daughter and a 3-year-old son. Wonder of wonders, the mom is an early-childhood therapist (ST) herself and "gets" our situation without all the effort of edu-ma-cating on my part.

Joy's playdate was with the son. We'll call him J-Cat, short for Jellicle Cat because he is currently fascinated with the musical Cats. I could totally see him as Mr. Mistoffelees in the 2030 Broadway-revival...

As soon as boots and snowpants were shed, Rose and her pal disappeared into a back room, and J-Cat and his mom came to join Joy in the livingroom. J-Cat gravitated to a bag full of soft-blocks, so that became the first game. The barista held Joy between her legs, J-Cat sat between his mom's legs, and they took turns trying to toss a soft-block to the other. We used short verbal cues for things like "Joy's turn!" "Catch!" "Ready, set..." (wait for Joy to maybe chime in...) "GO!" And lots of encouragement & cheering & praise. Joy took a lot of support to play the game, but tolerated it -- like all things, up to a point.

When Joy started protesting, we cajoled her into "one more turn" and then it was her turn to pick the next game. The barista whipped a couple of toy photos onto the notebook, and Joy picked the Farm See-n-Say. So then the See-n-Say passed back and forth, with each kid getting a turn to pick an animal and pull the lever.


"Joy's turn!"
"Pull!"
"Duck... quack, quack."
"OK, J-Cat's turn!"
"Old McDonald had a farm, E-I-E-I-O!" (everybody claps along, Joy with support)

Joy didn't say much, but she made definite selections when offered choices, and took good turns with pulling or pushing or whatever the toy was. We played ring-stack, and blanket-pulls, and a train-toy, and another See-n-Say (an older bigger one with a stiffer lever, featuring baby zoo animals), and mini-trampoline jumping, and tunnel crawling. Joy needed some jump-breaks from time to time, while J-Cat needed some breaks to sing and dance for us.


After about an hour, both kids had hit their limit of such structured turn-taking. J-Cat wanted to play an imaginative game with his mom involving play-food, not one of Joy's strengths. So while they did that, somehow the very basic 3-hole shape-sorter came out as something for Joy & the barista to do.


What happened next was magical.

Joy pulled the lid off the shape-sorter, dumped the shapes, and started working to get the lid back on (accomplishing it with just a smidge of help.) The barista handed her one of the shapes, and Joy went right to work trying to get it in (again with just minimal help). Once she succeeded in getting the edges lined up correctly in the proper hole, she paused... and looked at the barista... and twinkled with anticipation.

The barista built the anticipation with a rising tone of "ahhh... ahhh..." (Imagine winding your way up to a theatrical sneeze.)

After teasing through several sounds of anticipation, Joy let the piece fall into the bucket, and began giggling like crazy, getting rewarded with praise and a tickle.

They did this again... and again... and again. They went through the entire bucketful two times, and then it was time for record keeping and the barista had to go fill in the binder. But Joy wasn't done. She went through another whole iteration of the bucket with me! And then I got up to go check on Rose, and Joy still wasn't ready to be done. She took the lid off once more all by herself, got out four pieces, got the lid back on, and ran the show all alone for two pieces' worth, looking all the way across the room to where I stood at the doorway, to make sure that I was watching and reacting appropriately.

After that we had to say goodbye to our guests, sing the ByeBye song after the report had been written so the barista could get out the door, and get ready for dinner.

There ya go. How's that for a House Blend session?

Right now we've got the playdate thing happening once a week. The rest of the sessions at our house are generally one-on-one, though Rose inserts herself into the action from time to time. Then twice a week we have sessions at Joy's daycare, with a very different dynamic among a roomful of peers (I'm never around to witness these since I'm always at work, but she's been able to do some neat things with support like join in on dress-up play.) At this point we've got 12 sessions on the schedule per week.

It's not always this awesome, by a long shot, but it's fun to share a good one!

By the way. J-Cat's mom is very pleased with these playdates too (besides being a phenomenal partner as the action is taking place). All this structured turn-taking practice is GREAT stuff for J-Cat as well as for Joy.

The Best Social-Communication Teacher

When we first got Joy evaluated and into the Birth to Three early intervention program, we had an interesting stroke of luck.

The program was short on speech therapists, didn't have one to assign to us right away, so gave us something else instead. I got a couple of months of weekly training in parental techniques to encourage communication, using the Hanen program and the book It Takes Two to Talk. (There's another version of the program that's focused on ASDs, called More Than Words, but we didn't have a diagnosis at the time.)

The Hanen training gave us a magnificent foundation for getting more out of Joy's communication, turning us into better Joy-listeners and communication partners.

The Hanen program was founded in Canada for the very situation that we were facing: frustration with long waits for professional speech therapists, families who needed to get started "right now." It's an incredibly empowering approach. As their site says,

The goal of It Takes Two to Talk is to enable parents to become their child’s primary language facilitator, thereby maximizing the child’s opportunities for communication development in everyday situations.

Some of the highlights of the Hanen program, for me:

• An emphasis on meeting your child where she's at. This includes a very basic physical principle of positioning yourself to be really face-to-face with your child, rather than talking at her from on high. But it also entails letting you child show you what she's interested in, and paying close attention to her cues, and responding in a way that stands a good chance of drawing a further response. It Takes Two to Talk calls this the "Tuned-In Parent."


• An emphasis on playfulness and fun. As in, your kid's going to be much more interested in sticking with a social interaction if it's enjoyable all around. Let go of thinking that you have to make them talk (how many times have you heard an adult doing something like: "Hey, Joy, can you say 'spoon'? C'mon, say 'spoon' honey. Say 'spoon'!" and then she doesn't say 'spoon' and it gets totally un-fun for everyone.) Instead, enjoy what interactions they *can* do... maybe pretend to eat from the spoon. "Mm, good food!" then pass the spoon back and say "Joy's spoon!" and maybe she can pretend to eat too....


• One acronym I actually remember from the program, which is OWL, for Observe, Wait, Listen. Observe to see what your child is interested in. Wait to give her enough time to send you a message, whether a sound or gaze or action or whatever (it helps to lean forward and look expectantly, sending your own message that you are indeed waiting for a communication!) Then Listen for your child's message, paying attention to as many cues as you can. Even if you can't understand what her response, if you've waited and watched, you can often take a good guess and respond accordingly. Or else take a turn by imitating... and then OWL again to give your child the next turn in the interaction.

I found that a lot of this came pretty easily to me, once I took the time to think and practice. Of course there were many more steps, and thought-exercises, and we also got several video-taping sessions with the speech therapist who was leading the training so she could comment and critique how we were putting the principles into practice. It was simply thrilling to see Joy respond.

Well, another reason we ended up doing Joy's intensive autism therapy with Agency 2 and their House Blend was that their approach builds on similar principles. In fact, the James MacDonald (PhD) that I've mentioned before was involved in developing the Hanen program early on, and much of that work is evident in the Communicating Partners program that he later developed. His latest book, Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation, co-authored by Pam Stoika (PhD), is a highly-readable explanation of the approach and strategies. (Plus it's reasonably priced, what a bonus!)

The parent-empowerment agenda is powerfully stated on the very first page.

If you are concerned about your child's social development, communication skills, behavior or learning, the first and most important thing to do is to find a person (or small team of people) to be your child's social language teacher. In our experience, your child will make the greatest gains with a social language teacher who is:

• Someone who is already a competent communicator, with words as well as gestures and non-verbal communication.


• Someone who will be available to teach your child in a variety of real-life settings, such as play time, chores, meals, family outings and daily routines


• Someone who your child likes and trusts, and who likes and trusts your child


• Someone who is familiar with and dedicated to supporting the cultural and family values you hold dear


• [the list goes on!]...

Mothers and fathers, grandparents and guardians: go to the nearest mirror and look.

You just found your child's best social-communication teacher.

So, the Play to Talk / Communicating Partners training was what we layered onto the Hanen training when we were in limbo on the waiting list for intensive autism therapy, and we both wanted to keep moving forward and also start building our relationship with Agency 2.

Here's the gist of the Communicating Partners program: strategies that seem simple, but each of them can be unpacked pretty far and take quite a bit of effort and practice to really internalize!

• Balance: Do and say about as much as the child does and says. Allow child time to participate.


• Match: Talk and act in ways that are possible for your child. Talk and act in ways your partner can and will want to try.


• Respond: Let your child see that you are paying attention to his feelings, actions and words.


• Share Control: Be sure each partner has impact on the other, each partner has some control but not total control.


• Play and Affirm: Let your child see that you enjoy and value him just as he is.

All this represents another layer of our days with Joy, and the principles according to which our House Blend baristas are trained as well.

Upcoming layers: Joy's therapy goals, and how her school-district therapists fit into all this too. And maybe some bunnies.

The Baristas

Me and my extended metaphors.

Suddenly I find myself riffing on how if I'm going to use the name "House Blend" for the relationship-based therapy served up by Agency 2, the staff must be the baristas. Right? It's actually not such a bad analogy. They're the ones actually assembling and serving it up on a day to day basis. For the benefit of our (lone) male line therapist, I also hasten to point out that the World Barista Champion of 2008 is a dude -- the feminine-sounding ending on the word does not imply an all-female staff, though in our case it's pretty darn close.

Here's how Joy's team is structured.

At the head of the team is the Lead Therapist, a professional (degreed) clinician who is responsible for Joy's treatment plan. We were fortunate that she was also the therapist with whom we did the out-of-pocket work while we were waiting for Joy to pop to the top of the waiting list. She also keeps tabs on Joy through this blog and the Yahoo! Group that Lynda and the school-district therapists and I use to exchange reports. She supervises the Senior Therapist and attends team meetings every other month (I think) and also periodically does a session directly with Joy.

Next in the chain is the Senior Therapist. She supervises and helps train the Line Therapists, runs the twice-monthly team meetings, and does a session with Joy just about every week. I believe the required degree for this position is a bachelor's degree, though in a university town people's qualifications often exceed the minimum (like the taxi drivers with PhD's kind of thing). Lots of training & experience go into this one too!

Then the baristas who are behind the counter each and every day -- the Line Therapists. We have five of them. The required qualification is a high school diploma, though I believe all of our line therapists exceed that (we even have a speech-therapist-in-training who is most of the way through her graduate work!) Then there's some training at the Agency 2 office, and then 30 hours of supervised hands-on training, and then the line therapist can go solo.

The standard House Blend session is two hours long, with the final 15 minutes devoted to report-writing. Our fully-staffed weekly schedule involves 12 sessions with Line Therapists, or 24 hours a week, not counting any additional visits from Senior or Lead Therapist. Two sessions per week are at daycare, the rest are at home. Then twice a month we have a one-hour team meeting. For all of these hours, there must be a parent or suitable stand-in adult caregiver present.

When you figure that we also have four one-hour visits from school-district therapists (one occupational therapy, one speech therapy, two special-educator, who also sits in on Agency 2 team meetings from time to time)... Our schedule is just nuts. And Joy's getting bombarded with one-on-one attention.

We have an excellent team going right now. Hiring has been an issue, and it took longer than the state likes to see to get the team up to full strength -- technically we are responsible to get in 80 hours per month, and that didn't happen until December, though the team started assembling in July. We had lots of early washouts, including a couple of hires who never even darkened our door, one who had overbooked herself and bowed out while in training, another who left for a job more squarely in her field after having completed training.

I enjoy getting acquainted with our team members. Despite the official warnings in the paperwork about professional boundaries, I find that we share nuggets of our lives in conversation just because we do spend so much time together. So we've got the therapist who actually has worked as a Starbucks barista, and the one who has handbells in common with me and rock-band experience in common with JoyDad, and the one who used to sell jewelry in the parking lot at Grateful Dead shows, and the one who's working on a double-major in mathematics and art... It's really a delightful group. I hate the thought of the inevitable graduations and other turnover, but I guess that's part of the way things go.

Examples of Joy's goals, and the contours of a typical session, I'll save for future posts.

A final word about terminology, though. My career, such as it is, is in the field of librarianship. I have the master's degree and, as such, am qualified to work as a librarian. It makes degreed librarians all kinds of cranky when people refer to the high-schooler behind the check-out desk as a "librarian." It strikes me that there is something of the same dynamic with the word "therapist." Professionals who have worked long and hard for the various therapy degrees and credentials tend, I think, to shudder when the term "therapist" is applied to folks like Agency 2 line therapists. But... that's the terminology that Agency 2 uses, so that's how I'm going to phrase it. No disrespect to higher levels of credentialing is meant thereby. Meanwhile, the line therapists are the ones on the front lines serving up the House Blend, and we very much appreciate all that they are doing for Joy, and in relationship with Joy.

House Blend

Way back in the first month of this blog (July 2008, in case anyone's counting), I wrote about the challenges of decision-making regarding the overwhelming array of autism therapies. The post called How Can You Possibly Choose? has weathered well over the past 6 months -- still worth reading for background on our thinking.

Here in Wisconsin, where the state funds intensive-level interpersonal autism therapy, we had some parameters on our choices for what agencies and therapies were available under that program. In our county there are two choices, which I dubbed Agency 1 and Agency 2. At Agency 1, the agency's founder trained with Ivar Lovaas, the grand-daddy of Applied Behavior Analysis (ABA). Agency 2 takes a more relationship-based approach, incorporating principles of DIR/Floortime, the work of Dr. James MacDonald (Communicating Partners), and behavioral principles as well. We'd had a hunch that Agency 2's approach, focusing on relationships, might be the better match for Joy, but we knew that many people get excellent results with ABA. What really sealed the deal in favor of Agency 2 was when we discovered that Agency 1's version of ABA didn't "believe" in sensory issues, while Agency 2 makes them an integral part of their program.

Joy's sensory issues are written all over her -- one of her school-district therapists called her "THE most sensory-seeking child I've ever seen." We couldn't possibly go with a program that didn't "believe" in such a major component of our child's make-up.

So our hard-core work with Agency 2 got underway this July (after 15 months on the dreaded waiting list, which meant that the program actually started 19 months after her diagnosis, though we did do some introductory work out-of-pocket in fall 2007/winter 2008). I'm not quite sure why I haven't been writing about it more, as the one-on-one hours have gradually swelled to our target schedule of 24 hours per week. But at any rate, suddenly I feel like I have a lot to say about it, something that will span a number of posts in introduction and then will presumably weave its way through my posts as we move along.

One challenge has been trying to get my mind around how to talk about Agency 2's program. Interestingly enough, they really don't have a name for their protocol, as far as I can tell. People tend to refer to it by the organization's name, as in "Agency 2 Therapy." That doesn't flow trippingly off the tongue for me; for the purposes of Elvis Sightings, I hereby dub the protocol "House Blend."

Mama Mara recently introduced me to a new blog called Spectrum Siblings, a most excellent and prolific blog by a Cale, a college sophomore on the spectrum (Asperger's) who also has an older brother with autism. He has been doing a "Theory Thursday" series with explorations of neurodiversity and how different therapies can intersect with a neurodiversity outlook. One of his opinions that leaped out at me:

[T]he therapy should follow the child’s interest. The best is a mix of DIR (to be discussed next week), and ABA, as it allows for the child and therapist’s goals to be accomplished.

Ooo! House Blend, House Blend!

So, here's a little bit of an introduction to what House Blend looks like.

The tag line on the Program Guide for House Blend staff (the baristas?) is:

Learning to Interact......Interacting to Learn

Much depends on the partnerships between Joy and her staff.

The program sets and works toward goals in five areas: Regulation (there's the sensory stuff, right at the top of the pops!), communication, relationships, learning, and daily living. There's a definite hierarchy in these areas. The theory is that if you're not regulated, you won't be able to communicate well; relationships depend on communication; and the partner relationships are key to guiding learning.

Right now, the goals for Joy are written in the first three of the areas. The first phase of the program, basically the first year of three, is called Beginning Relationships. The first weeks (months) of the program were all about getting acquainted and getting our team up to speed. Joy accepts new people with relative ease, but the building of the team was a longer-than-expected process. However, operating at full-strength now, we've been able to work on the first goals and revise/expand them as Joy meets the benchmarks. There has been forward movement, absolutely. One of the documents we received from Agency 2 early in the process, which I can't lay my hands on right now for some reason, described the expected progress as an upward spiral. I think that may be from Greenspan?

Anyway, there are lots of specifics about communication strategies that therapists (and parents) are to use with Joy, and how the sessions are structured, and how to take data. I'll do an upcoming post or two on the communication, which is where Jim MacDonald's work comes in, and also a post on Joy's specific goals and what progress we've seen. And probably another post on a typical session. There's much to write about!

Next post, though, I'll talk about the House Blend Baristas, or how Joy's Agency 2 therapy is staffed.

By the way -- Mama Mara may wish to visit the How Can You Possibly Choose link in light of one of her recent posts. The framing story of my post (involving Rose) has something in common with recent experiences in her household...

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
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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."