The phrase “doctors and patients as enemies” is what knocked me over in the reposted editorial by Milton Friedman. Is there anyone who doubts that very many, and certainly too many, parents and schools see themselves as adversaries in the special education process?
This mindset comes from a few places: scarcity (only a few districts would oppose services paid for by someone else), fear of responsibility (some districts and teachers don’t want to be accountable), and simple distrust and fear all around (parents initially have few skills to address autism’s challenges and look to experts, expecting solutions).
But we can probably all agree (except for the misanthropes (and I need a special word for those who dislike children and people with autism)) that this shouldn’t be how it is. Many parents I’ve met who are unhappy with a child’s placement almost uniformly started out expecting the school’s child study team to have the child’s best interests at heart, finding out later that the placement isn’t merely right or wrong, appropriate or not, but “negotiated.” And, beyond the simple disconnect with the statutory imperatives of IDEA, this concept sets up parents to be wracked with guilt because there is an implication that they could have always negotiated for “more” or “better” and at the same time forces parents into antagonistic relationships with districts because the school could almost certainly have “given more.”
By taking the placements for children from autism from a research-based model to one that is perceived to be driven by other factors clearly NOT based on what works for which children, this dynamic is created. And it flourishes festers because there’s no clear path out.
I gave a presentation last week on NJ autism insurance reform and discussed the possible silver lining for parents of the golden lining of insurance coverage for medically necessary ABA and related therapy for children and adults with autism: to me, the notion that insurance companies will be paying for ABA and other therapy mean that they might investigate ways to achieve similar outcomes for less, or better outcomes for the same money. If they can figure out how to know which drug to give to which patients, maybe they can focus their much larger wallets on the problems facing our community.