1) concerned parent of high management needs student who has only been safe to himself and others when schooled at the Judge Rotenberg School in Massachusetts, where some students are subject to electric shocks and other harsh aversives, doesn't know where else to send their child if new aversives policy is not made permanent
2) Regents' new policy will allow all special education students statewide to be subject to aversives including strangling, electric shocks, and confinement in windowless rooms without review
Concern about the new policy has led to the Regent's deferring a final decision on the policy at their September meeting, but extending the emergency regulation so that Rotenberg students can stay where they are. Meanwhile, a federal judge struck down the regulations' application to the Rotenberg Center at the request of a group of NY parents of students there.
So what is a calm but concerned parent of a special education student to think?
You could read the entire proposed regulation, availalable at http://www.vesid.nysed.gov/specialed/behavioral/requirements606.htm
When I did, I came away thinking there was so much review of the procedures by state ed -- called by the acronym VESID in much of this debate -- of the procedures to be used for each child, that the necessity of such measures would be required to be shown by the proposing school officials, and that permission was likely to granted only when less restrictive alternatives had been exhausted.
But disability advocates insist that this will not be the case, and that regulations that require student level review by VESID in a range of other subject areas are regularly granted on a rubber-stamp or blanket basis.
Here's a summary of what the New York Civil Liberties Union has to say about their efforts to block the regulation:
And their testimony to the Regents regarding the regulation gives a good summary of the legal arguments they would use if the regulation was made final:
Elsewhere on this blog you'll find a collection of resources on Positive Behavioral Intervention and Supports (PBIS), an approach that as a spectrum parent I wholehartedly support and try to implement in my own home. On the other hand, I am also a parent who walks her 8-year-old with a leash, a measure made necessary by his history of running into busy streets. It gets me funny looks, but I continue to have a little boy instead of a road pizza -- my experience tells me this is a necessary tactic, even as we continue to work on his compliance and safety awareness so that it may someday not be needed.
And my concern is compounded by the fact that our school does use manual restraints to correct that child's flopping on the floor and eloping from the classroom. But before they implemented a well-documented protocol to limit his freedom of movement and stand him up from the floor, they reviewed it in detail with my husband and me. If restrained, he has the opportunity for freedom every 30 seconds, and he is never left unattended in a time out because the condition for ending it is that he is quiet. In short, they follow principles laid out in the regulation if it were ideally carried out. They tried and found wanting less restrictive responses, and they trained all staff and briefed parents, obtaining consent, before implementing. (All this happened before the regulation, and I'm frankly not clear how they will handle it differently in the future.)
Now I realize this very happy situation is only possible because his school has an appropriate staffing ratio to deal with behaviors such as his, and other schools, including others we have attended, are very unlikely to be able to meet such a standard of program excellence and professional ethics.
So I find myself wanting to embrace the NYCLU position because it will make schools everywhere actually employ PBIS, as my son's does, which is precisely why they use manual restraints in limited ways with strict review procedures. I see this as just like me and my leash, which keeps my boy alive while I work actively on building his skills so as not to need it. But, I do want programs that serve my kid to have access to aversives (with reviews and limits such as those in the regulation) when less restrictive measures fail, which they sometimes do in spite of everyone's best efforts.
I think this is what happens when we are stuck between the world we want to have, that policy makers to often speak as if we do have, and the one in which everyone except the lucky few in fact lives.