Monday, June 28, 2010

The importance of public participation and policy development

Many states are struggling to develop budgets and are under severe pressures from seemingly endless mandates from many different sources. Some mandates come from federal laws and others come from contractual obligations and still others come from the constituents themselves. Locally, the end result of this is seen in a NY state budget process that has gone from the original inanity of 'three men in a room' backroom dealing to 'one man making dictatorial emergency extensions.' At this point the populace has been so effectively removed from the budgetary process that I am not even sure they realize yet that lobbying in all of its forms (direct and proxy) is functionally dead. I find it amusing that at least the New York 'three men in a room' process could be lobbied - who would have thought that system could be degraded into something worse??

Inappropriate and ineffective decisions are more likely to be made when the populace is removed from the process of participation. The strength of participatory and representative democratic action is that it allows information and opinion to be fed into the decision making process. I understand that there are potentials for abuse and misuse in this system - and it is important to address those problems - but we don't strengthen our policy development by removing public input and leaving important decisions buried deep within emergency budget extension bills.

I don't mean for this to become a political rant - I want people to understand how this has a direct impact on people's lives. I am thinking about early childhood education in particular this morning and how this applies.

California's budget woes are perhaps more widely publicized than New York's budget woes, but I believe that is because California has not been as successful as NY in developing a workaround to political log-jamming and legislative paralysis. I recall reading a recent California proposal that would increase the entrance age for kindergarten to five years of age. The appeal of this is that it effectively saves the state millions of dollars by delaying entrance into the system - and although it is a short term solution it is an appealing money saving trick because it is easier to cost shift onto the general populace than it is to confront the state pension system or teacher unions, for example.

The justification used for these policy decisions often comes out of think-tanks. Sometimes think-tank work is really sound and helpful; other times it is judgmental and politicized and of dubious quality. The justification cited for the California proposal is a Rand study completed a few years ago that states that delaying kindergarten results in higher math and reading scores. What the study doesn't explain as well is things like:
  • Standard error of measurement on tests, particularly for that age group
  • The tests used are often developmental, meaning that it is expected that a five year old will likely have better 'readiness' and subsequent academic progress than a four year old.
  • These tests tend to have poor predictive validity for children who have difficulties
  • School readiness factors are complex and interact with a multitude of influences that are not fully considered or discussed in this study.
In sum, poorly applied science can lead to bad policy - but people's eyes glaze over if you try to engage them in conversations about standard error of measurement and predictive validity. When there is money to be saved it is difficult for a politician to want to hear a debate about these technical details.

To make matters worse, there is the natural lazy tendency that fosters the thought that 'if State X is doing it then they must have really looked at it and studied the issue so it might be a good idea for State Y.' There is no more insidious spread of poor decisions than that caused by lazy politicians who are simply following the herd. This brings me full circle to the original point - we are shut out of decision making and there is limited opportunity to provide input.

So when I see information from think-tanks being 'passed around' and I see the flawed decision making process flow from California toward New York, and as I see limited opportunity to counter incorrect information I just get a little nervous. Some days it feels like we are struggling to climb and reach for an objective and there are a multitude of forces (some inadvertent and others purposeful) that are greasing the mountainside.

We have a lot to fix with our process. I encourage occupational therapists and other professionals to become more educated and more engaged so that better information can be considered and better decisions can be made. It is not acceptable to just let decisions be made without public input and democratic participation. We all need to do more to make sure our voices are heard and that there is appropriate conversations about forming policy.

Background reading:

Kindergarten readiness bill passes State Senate. Retrieved June 28, 2010 from http://www.senatorsimitian.com/entry/kindergarten_readiness_bill_passes_state_senate/

Datar, A. (2003). The Impact of Changes in Kindergarten Entrance Age Policies on Children’s Academic Achievement and the Child Care Needs of Families. Retrieved June 28, 2010 from http://www.rand.org/pubs/rgs_dissertations/2005/RGSD177.pdf

Friday, June 04, 2010

A parent questions an auditory intervention program

Dear Dr. Alterio:

I read your article on Tomatis and other auditory integration programs. My son has autism, and we are midway through a program that uses a form of Tomatis. Their company is called {REDACTED}.

My gut is telling me that this may be a scam, but as a concerned parent with a child with Autism I'll admit that I am easy prey. During one visit the instructor (I now question whether she was an OT) told me that my son fell asleep during the session. I asked how long he was asleep, and she said about 45 minutes (the session was only 80 minutes long). She then proceeded to tell me that that was ok, because he had the head phones on during that time. Anyway, before I sink another $4k into this program, I would be interesting in knowing if you've heard anything about this facility, as well as you opinions on this form of therapy. If you think I'm being sold snake oil, please let me know. As I said, my gut is telling me to use the money to further his ABA sessions.

Thank you,

A Concerned Parent

**********************************************

Dear Concerned Parent,

I have never heard of this center so I really have no information about them or their work.

I have not changed my opinions about these interventions and I don't recommend them for families. These techniques are not supported by research and they are largely disregarded by most practitioners. Some of these techniques might be interesting to research and I am not opposed to that but I disagree with marketing them to families and charging such high out-of-pocket prices. It is my opinion that in general you would probably be better off investing your time and resources into ABA interventions or functional-based therapy sessions. Any type of ABA or functional intervention may also include some components of addressing atypical sensory processing characteristics and traits, but they will do so within the structure of a scientifically defensible intervention plan.

I strongly encourage you to consult with your pediatrician, psychologist, or other trusted health care practitioner to get some additional advice on what the best plan would be for your child and your family.

Generally, a good measure of the 'acceptability' of an intervention program is the degree to which it is covered by most medical insurance, or the degree to which it is readily accepted by the professionals in your child's school, and whether or not it is supported by your own pediatrician.

For example, occupational therapy may be covered by your medical insurance if the program is time-limited, if there are measurable and functional objectives, and if the program is designed to address functional performance deficits by providing your family with activities you can engage in over time to help facilitate skills and normal development. That would be very different than a program that charges you thousands of dollars in out of pocket cash because 'insurance won't reimburse it,' does not have specific measurable or functional objectives, and is not generally accepted by the other professionals in your community.

I understand the allure of these kinds of interventions but if they indeed worked as well as advertised they would be well accepted, there would be research supporting the techniques, and national experts would be telling everyone to go and get the intervention. The facts instead are that these techniques are marginally accepted (at best), there is no research to support them, and national experts tend to advise families to avoid these experimental intervention methods.

I know that hearing an anecdotal success story is usually more than enough to spark hope in a family that is trying to find the best intervention for their child. You are wise to question whether or not this is an appropriate way for you to spend your resources. I again encourage you to speak with your child's pediatrician to help you design the best intervention program for your child.

Best of luck to you and your family.

Christopher J. Alterio, Dr.OT, OTR
ABC Therapeutics
11390 Transit Road
East Amherst, NY 14051
(716) 580-3040
(716) 580-3042 (fax)
chris@abctherapeutics.com
http://www.abctherapeutics.com/

Wednesday, June 02, 2010

The importance of listening to mom

One of the interesting things about my time spent working in a pediatric hospital was learning that mom's advice to kids on 'what not to do' really did turn out to be good advice. Of course when you are a kid no one thinks that if they run with something in their mouth something bad can happen. The truth is that bad things happen all the time but you might not notice unless you happen to be in a place where all those bad things end up being treated.

It is a tragic reality - and the hospital workers have to deal with the stress of seeing these horrible accidents on a daily basis. Sometimes the only way to mitigate the horror was with a dry humor. I remember doing rounds with the neurosurgeon early on a Wednesday morning and marveling at the x-ray showing the point of an umbrella impaled through the roof of a child's mouth and resting squarely behind the child's eyes. It was a miracle that the child survived and after the surgery to extract the umbrella there was not any immediate sign of neurological damage. As we all stared at the miracle the resident said the obligatory, "Mom always said not to walk around with things in your mouth." The quick-witted neurosurgeon deadpanned, "Agreed. But imagine the challenge I would have had if the umbrella opened."

These kinds of events started me on a long journey of participation in child safety awareness activities. I try to post information for people to increase awareness - I think it is very easy to think that these problems are low-incidence events. As I said, unless you are working in a place where you see that product recalls actually happen for a reason I can imagine that it just seems that there are too many regulations and too many rules and too much paranoia and too much tort law.

I'm thinking about all of this today because I was reviewing a monthly list of consumer product recalls. I noticed a pattern of recalls based on drawstrings in children's clothing - there are longstanding rules about drawstrings that CPSC has published but apparently they are cracking down even more on this issue and adding this kind of clothing to the Substantial Product Hazards List.

In my opinion this is an example of a good place for government, and I don't object to tighter standards of control for products (imported or domestic) that can impact the health and safety of children.

I've seen two drawstring accidents in my career. They were both horrible.

I know the summer will be full of promise and fun. Children will make important memories and there is a lot of joy in that fact. Sad things will happen too. I wish they wouldn't happen. Maybe having a healthy level of awareness can prevent some of the sad things.