Tuesday, September 8, 2009

'Foster Care' Kids....they are without Parent Advocates

Finally, an article that asks the real question...and, an interesting read, by author and autism researcher, David Mandell:

Are autistic kids in foster care system being over medicated?

Who should we as a society be watching out for more than kids with disabilities who are in foster care? They are kids. They are disabled. They don’t have their parents to advocate for them. They are our responsibility once they enter into the foster care system.
What if they are being over medicated?
One subject that comes up a lot in the online autism community is the use of psychotropic medication on autistics. Note that the following is my opinion and not from the paper: medications, including psychtropic medications, have their place and can be beneficial, but great care and monitoring must be taken to insure that they are appropriately used. Psychotropic medications should not be used as chemical restraints.
That is why I was very interested when I saw that this paper was going to be published in Pediatrics: State Variation in Psychotropic Medication Use by Foster Care Children With Autism Spectrum Disorder.
The paper has been out for a while but I couldn’t blog it right away. I wanted to take the time to do this paper justice. In the end, I don’t know if I have as I’m trying to find a good “voice” for this post. I keep switching between trying to give an uncolored presentation of the data and being outraged.
Yes, outraged.
The paper authors are David M. Rubin, MD, MSCE, Chris Feudtner, MD, PhD, MPH, Russell Localio, PhD, and David S. Mandell, ScDd.
If you are a regular reader of this blog, you may know that I have a great admiration for Dr. Mandell and his group. He asks important questions, often about groups like autistic racial/ethnic minorities or about autistic adults. Groups I consider to be the underdogs in the struggle for recognition and services in the autism communities.
Who could be more of an underdog than disabled kids in foster care?
One of the reasons the authors give for studying autistic kids in the foster care system is:
Second, beyond the cumulative impact of trauma on psychiatric symptoms after maltreatment, children with ASD in foster care are particularly vulnerable to the social and psychological disruptions that foster care placements can create, such that an excessive variation in the use of psychotropic medications between states may indicate problems in the ability of different foster care systems to achieve placement stability for these children or adequately provide for their well-being.
My read on that—autistic kids are more vulnerable to being traumatized by the foster care system, and the states using more meds may be worse at being able to care for these kids.
The authors list a number of factors that could play into this, including lack of resources and lack foster parent or caseworker training. One big factor—the possibility that these kids are frequently moved around. This is hard on all kids, but is obviously going to be especially tough on ASD kids.
The objective of the study was:
The objective of this study was to compare on a national cohort of children with autism spectrum disorder (ASD) the concurrent use of >=3 psychotropic medications between children in foster care and children who have disabilities and receive Supplemental Security Income, and to describe variation among states in the use of these medications by children in foster care.
They are looking at kids getting three or more psychotropic medications at a time.
Psychotropic medications include:
neuroleptic, antidepressant, stimulant, anticonvulsant/mood stabilizer, anxiolytic, and hypnotic agents. Lithium was categorized with the anticonvulsants.
What did they find? For starters, 20.8% of autistic kids in foster care were using three or more classes of psychotropic medications. This double the number of kids who were classified as having a disability (10%).
I could see people arguing that by the nature of the disability, autistic kids might be expected to use more psychotropic medications. Or, that kids in foster care might be more likely to use multiple psychotropic medications. The authors acknowledge this, but point out that:
Nevertheless, Although one might expect the overall use of psychotropic medications to be higher for children in foster care than for other children, state-to-state differences in the average use of medication by their children, although expected to vary to some degree randomly, would not be expected to vary excessively unless system-level factors were exhibiting a high level of influence on such use independent of children’s needs.
My interpretation: there is no obvious reason why the use of psychotropic medications should vary much from state to state. There may be some statistical variation, but each state should be pretty close to the average.
That is, unless there are “system-level factors” which have “a high level of influence on the use of psychotropic medications independent of the children’s needs”.
My interpretation: if there is a variation by state, something other than the needs of the children is likely to be causing it.
And, yes, they did find a state-to-state variation in psychotropic medication use:
Forty-three percent (22) of states were >1 SD [Standard Deviations] from the adjusted mean for children who were using >=3 medications concurrently, and 14% (7) of the states exceeded 2 SDs.
Statistically, they would expect 2 states, not 7, to be more than two standard deviations from the average.
OK. My guess is that this point most people’s eyes are starting to glaze over. 14 states instead of 2 are more than two standard deviations away from the average in terms of foster care autistic kids using 3 or more psychotropic medications. Not exactly a sound byte you can take to your congressman, is it?
How about this, in some states over half of the autistic kids in foster care are getting more than 3 psychotropic medications. Half of the kids. Or, how about this—the state-to-state variation in the raw numbers vary by a factor of 10.
Yes. In some states about 5% of the kids are getting three or more psychtropic medications, while in others it is as much as 60%.
Take a look at the figure below (click to enlarge). Pay special attention to the figure on the left, which is the raw data.

The raw data show the huge variation in use of psychotropic medications by state.
Why do the raw data and the adjusted data differ so much? The adjusted data is controlled for other diagnosed clinical conditions. These include depression, bipolar disorder, anxiety disorder, attention deficit disorder, conduct disorder, schizophrenia and mental retardation.
ASD kids are more likely to have other diagnoses if they are in foster care. 32% of ASD kids have another diagnosis, while 54% of ASD kids in foster care have 1 or more additional diagnoses. They are more likely to be given medications as well. This is shown in Figure 1.

Again, my read on this: A study like this can’t discern why ASD foster kids have more diagnoses and get more medication. It could be that these kids actually have more conditions and need the medications. It is possible that the trauma of the foster care system is affecting these kids greatly. It is also possible that some kids are being given extra diagnoses in order to justify the medications.
The authors note this as quoted below:
Furthermore, we are concerned that the true magnitude of variation might be larger than we report, because our method of analysis adjusted conservatively for other psychiatric conditions listed in the children’s records; if these diagnoses were not accurate (as has been suggested by others)[ref 15] and were instead recorded as a means to justify treatment with medication, then our analysis might have underestimated the true extent of state-to-state variation.
I am very glad they included the raw data in this case. It highlights the big potentiality that there is a bigger state-to-state variation than in the adjusted data.
Seriously, why would ASD foster-care kids in Arizona be more likely to have a second (or third or fourth) diagnosis than the similar kids in Tennessee?
There is a lot more in this paper. But as one final note, here is a comment about the youngest kids in the study:
Finally, we also note that younger children in foster care were proportionately using more medication; as many as 1 in 8 children aged 3 to 5 years in foster care was receiving medications from >=3 psychotropic classes in this sample from 2001
As I mentioned at the outset: who is more vulnerable than a disabled child in the foster care system? For Americans like myself, the kids in this study are our responsibility.
It looks to me like we are failing them.

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