Wednesday, July 1, 2009

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!


AuntLO said...

First, congratulations on a legislative victory and good luck on the rule making phase. Second, stop showing off that Wisconsin has a budget!

Anonymous said...

wallholdingbackwater! You.can.write. Clear enough for a legal-sausage-hatin' ol' lady like me! Way good for a cooked amphibian, too!

I'm very hopeful for "as sweetly as possible" for Joy and you.

You did not mention (not that you did not cover a lot of bases) any possible influence of a nationalized program on this legislation-?

Forward! I like that!

Meanwhile, whenever the heat is turned down, even temporarily, I'm interested in whether Joy's life will include school in the fall - ?

Standing ovation for all who participated in this outcome. BRatK

" JUST US " said...

Thats Great to hear ! Georgia needs to get with the Program. We can't even manage to get it passed threw any of our legislative Dept. We must have corn and peanuts growing out of our reps ears..

Quirky Mom said...

Well done! At least one state legislature doesn't have it's head in its ass right now!

Anonymous said...

hearty congratulations for a job extremely well done! these legal successes are due in no small part to the hard work and tenacity of parents like you who dare to tell their stories. good work, mama!

mama edge said...

I have to admit, I really didn't think they'd actually do it.

This just might give me back my faith in the legislative process.

Trish said...

Wow, what an amazing victory! We have a similar insurance law that just went into effect in PA on July 1st. Unfortunately, it doesn't apply to us because my husband's insurance plan is self-funded, so his employer (which ironically is the state of PA), doesn't have to follow state regulations, only federal ones.

I think the law here allows for only $36,000 per year and that's for everything related to autism - behavioral, OT, Speech, etc. After that, MA would kick in, but you might have to change providers if your provider isn't enrolled with both.

On another note, my son's summer therapeutic program was recently canceled due to the state not approving it because they felt that Floortime (which was going to be used for the basis of the camp) was not evidence-based. Definitely a fight to do anything besides ABA on the state dollars here!