Saturday, February 21, 2009


So I had in mind to start this post with some cute collection of rules in our household, maybe some particularly quirky ones related to Joy's autism. But then I found a link from Quirky Mom to a most excellent post by One Sick Mother, who writes about Rules, Damn Rules, and Statistics. She structured the start of her post the way I'd hoped to do mine, only better than mine was coming out. So, go read hers, and remember her introduction. Then come back and finish mine.

One Sick Mother's well-deserved rant was about the rule-of-thumb kind of thing that physicians use in making their diagnoses, such as "Kids under the age of one don't tend to get strep." The problem comes when the rule becomes inflexible and exceptionless, morphing into "Kids under the age of one DON'T get strep." Her kiddo, of course, got to be Exhibit A of how the rule needed some flexibility.

I'm going to rant about discuss rules that need flexibility too. We've had several examples lately of program rules that are designed to prevent various kinds of inappropriate behavior. Such rules (when not administered with flexibility) can have unfortunate consequences for people who behave WELL.

Here are the examples:

  1. From Agency 2: Parents and therapists must behave professionally toward each other at all times.

  2. From Project Lifesaver: A year's supply of batteries and bands for the Project Lifesaver radio-tracking device may be administered by someone other than the sheriff's department. However, that "someone" may not be the caregiver of the person wearing the band.

  3. From the state: Intensive autism therapy hours must happen in the home with an adult present in addition to the therapist. Preferably that adult should be a parent but really any adult over the age of 18 will do. Any therapy hours in other community settings must be applied for in advance, with detailed goals, and approval will only be for 3 months (at a time). You can't do more community hours than 25% of the therapy hours you have scheduled in the home.

We have encountered different levels of flexibility with these three rules.

The administration we've encountered with Rule 1 is, in my opinion, a beautiful example of how flexibility should be employed. In my post about the baristas, I had written,
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.

Our lead therapist read that and reassured me at our next meeting. She said she had no worries at all about barista-boundaries at our house, not even the informal data we've been collecting about who's got tattoos! (For the record, on our Agency 2 team there are 3 baristas with tattoos and one former Harley-rider. Which I think almost counts.) The rule, she explained, is there because not all families do have healthy boundaries, and sometimes parents will try to do things like glom on to a therapist as a Best Friend Forever or otherwise make unwelcome overtures. In which case -- it's very useful to have the rule to enforce.

Flexibility! The idea that not all families have to be punished because some families abuse privileges! Is that cool, or what?

So then we have the Project Lifesaver rule. I love the idea that the batteries and bands for the radio device don't need to be administered by the sheriff's department. It's been a hassle both for us and them to have us truck out to the station once a month or have them come to us to do the monthly battery replacement, plus it freaks out the neighbors to keep seeing squad cars in front of our home.

But. How silly is it that we have to burden someone ELSE with the battery storage and installation, and can't do it ourselves? We who can administer epilepsy meds three times per day for months, nay years, and never (OK, rarely) miss a dose?

Alas, there's no flexibility for the sheriff's department on this one. The rule comes down from Project Lifesaver Central and the deputies have to comply. So, we'll find a way to make it work. Our Wonder Woman daycare lady Lynda has agreed to get trained in how to do the monthly battery installation, and take delivery of the year's supply of batteries and bands. I'm sure we'll (wink) be able to work something out.

And then there's Rule 3. The biggie. The one from the state that says we have to have our House Blend therapy at home.

This rule was not always in place. At one point, therapy could happen at daycare as well as in the home. Lynda has experience with a previous kiddo at her daycare whose parents both worked full-time, and the child received oodles of House Blend hours at daycare. Which was great! Lynda's place is "therapy heaven," as one of our previous speech therapists put it. It's a home away from home, Lynda generally only has 6 kids at a time, she does a great job of participating in therapies and learning techniques and making suggestions and keeping everybody in the loop.

Unfortunately, there were apparently daycare situations that were not so ideal. Plus there came a budget crunch and a cutback in the number of hours that would be funded. Suddenly the pendulum swung crazily in the other direction. Therapy at daycare became suspect; therapy anywhere outside the home became suspect.

So, here's the ridiculous situation we find ourselves in. We have a glorious daycare setting, an ideal therapy setting, a home away from home. Joy's been going to this daycare for a couple of years, where she gets to be with peers and gets all the extra enrichment that Lynda's place offers.

If we'd had Joy at home alone with an au pair or a grandma or other one-on-one babysitter (anyone over the age of 18), the state wouldn't bat an eye at sending the therapists to that type of daycare setting. Which, in the case of a one-on-one paid provider, is generally more expensive than group daycare, which amounts to discrimination against working parents who don't have a lot of extra dollars to throw around.

But because we want her to have some therapy hours out of the home (four hours a week! only four, out of twenty-something!), we have to write these elaborate applications for three-month goals, with plans for how we're going to transition out at the end of those three months even if we're going to apply again. The most expensive member on our Agency 2 team (the lead therapist) is spending HOURS on these applications, plus daycare visits and documenting and generally going to bat for us.

Our first three months of therapy at daycare are winding up. The application for another round is in right now, though there have been several requests back from the state for further information and documentation. More administrative/clinician time and effort. For a lousy three more months, that might or might not be granted, and if granted, might be the last three months of House Blend therapy at daycare Joy gets to have.

Is this outrageous, or what?

Damn rules.


One Sick Mother said...


Yes Rule #2 and #3 are pretty outlandish. You are fortunate to have Lynda wiling to to help you out -on both counts, as it happens. I found that many daycares and preschools were unwilling to have therapists come work with the kids on location because it might scare off the other parents (I'm not joking).

The red tape required to get an exception to #3 sounds like a typical case of the best intentions going horribly awry.

It's a pity a few bad experiences agencies may have with some unwise parenting decisions can mess things up for the rest of us.

Thanks for the nice plug, BTW ;)

Anonymous said...

OSM did indeed give an excellent intro to your post, JoyMama. I truly despise formulaic medicine (and therapy*). If professional judgment is not allowed, nay expected, is restricted, and undeveloped, the physicians of the future will only be worse. Argh!

Some synonyms to rules: regulations, guidelines, laws. Yes. Rules codify law. Project Lifesaver - undoubtedly, the rule is for Joy's protection, no?

[Did you see one of my commenters confess to her 'sarcasm-o-meter' going off during her comment? I've had a tough few days that way.]

I was thinking of a really good comment this morning....this may be just okay. We just finished watching the move "Fireproof". I recommend it.

Now back to the topic at hand, your post.

I cannot account for those, really severe, 3-month restrictions on therapy outside the home. Surely the codifiers understand the burden placed by such a short rope - meaning they intend for therapy to be short term or want to dissuade parents from using daycare.

From a distance, I could also imagine law passing with flourish on 'expansion' of services by flourishing politicians while codifying the the services to death. Not saying that is the case where you are. Just saying.

From OSM's comment:
"It's a pity a few bad experiences agencies may have with some unwise parenting decisions can mess things up for the rest of us."

Likely, the law, er, rules were most influenced by the few. Please comment if you disagree - and why - so I can rethink that. Seems that way to me.
*Tie my hands and I will walk away.

Elizabeth Channel said...

That's a brand of craziness I've not seen. My!

mama edge said...

Bureaucratic red tape and nonsensical rules in the administration of a a governmental program? Shocking.

Must meet soon to talk about my big weekend!