All over the country, we have reports of children and teens who have been seriously harmed or even died in schools or treatment facilities because of the inappropriate use of aversive controls. This entry is part of a series of entries I've written in response to new proposals by the New York State Education Department..
Our StoryA number of years ago, we made the painful decision to hospitalize our then-teenage child because she became a danger to herself from mania. We expected that she would get compassionate and competent help from the well-known hospital where we had her admitted. We were wrong.
On the day she was admitted, she panicked. Immediately, four very large men were summoned to physically restrain her. They held her down while she was given an injection of an antipsychotic to tranquilize her. We could hear the yelling and struggle from the other side of the door where they had sent us to wait. We sat in the hall and sobbed, listening to what was going on, as she had not been violent until then.
The next time we were allowed to see her, it was two days later. The nurse, whom I mentally named "Nurse Ratched," told us that she wasn't cooperating with them and that she would have to spend the entire weekend in seclusion in a padded room with only a mattress on the floor. They had taken away her clothes. They didn't seem to understand that she was obsessing over her shirt and if they had just given it to her, she would have been able to listen to them and maybe cooperate with them. But they threw her in this room because it was more convenient for them not to deal with her for an entire weekend. I was incensed and told them that that was not the plan her physician had outlined to me and that I had consented to. I asked them to page her doctor immediately to get things straightened out. And that's when trouble began, because it was Friday night and Nurse Ratched refused to page my daughter's doctor. Then she informed me in a snide tone that my daughter had consented to the plan. So I asked my daughter, "Did you sign any informed consent form?" She looked at me, and despite being heavily sedated, said to me, "No, Mom, I told them I refused to sign it." I breathed a sigh of relief, told her she had done great, and that we were going to get her out of there. I raced off to find help, after telling my husband not to leave her alone and not to leave the ward because I knew they'd lock us out if we left.
So what do you do when it's Friday night and the nursing staff is trying to lock your kid away for a few days to make their lives easier? Well, for one thing, I stat-paged the chief of medicine for the hospital. For another, I stat-paged her private doctor, and then I stat-paged the patient ombudsman for the hospital. Then I literally stood in the lobby of the hospital and created a huge scene until I found someone to straighten out Nurse Ratched. It took over an hour and Nurse Ratched was staring absolute daggers at me, but by the time we left the hospital, my daughter was no longer in seclusion and we had worked it out so that she was to get her clothes back as soon as she woke up in the morning. We left the hospital exhausted, but not until after Nurse Ratched got professionally reamed out by the hospital's Clinical Director of Nursing.
The next morning, I showed up at the hospital at 7:30, because I knew Nurse Ratched would try to sabotage the deal, and sure enough, she hadn't left instructions or authorization for the morning staff to give my daughter back her clothes. I created another scene. It took the staff a while to figure out that not only did I know what I was talking about, but I'd see them fry in hell if they mistreated my child.....
Fast Forward
Why do I share that painful experience here? Because in trying to help my child, I had trusted people who had abused my child and who could have totally destroyed forever any trust my child had in us. And because that experience gave me some firsthand appreciation for how some techniques could easily be abused to a child's detriment. And because I know that there are a lot of parents who mean well but wouldn't be able to fight the system for their child.
Since that horrid experience with my daughter, I've seen restraints used in some schools in New York. And I've seen kids traumatized by having huge adults restrain them or even sit on top of them to hold them down. Now the Dept. of Education is proposing regulations that would permit these techniques and even more aversive techniques on young disabled children.
Food for Thought
The following statements are from Charles Huffine, M.D., a child and adolescent psychiatrist and are from an article in the public domain:
Pollack, D. A. Moving from Coercion to Collaboration in Mental Health Services. DHHS Publication No. (SMA) 04-3869. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 2004.
It has been said that we are one of the most violent societies in the world and that we use force too quickly to solve problems in our homes, on the streets, or in our community institutions. I sometimes wonder if the restraint and seclusion issue can't be really looked at in the much broader social context of using force to solve problems. At any rate, what I want to do is to try to put the seclusion and restraint issue into a broader contextual framework.
... First, we must consider developmental status. There is a huge difference between small children, middle-sized children, and teenagers. When someone is restraining or secluding a child, it is an antithetical move considering the nature of the child's developmental process. In the course of growing up, as younger children move to do things more independently, they may move beyond where they should go or what they should be doing. Their parents intervene and pull them back a little, mindful of a child's safety. This is the organic cyclical process of pushing toward and pulling back from the goal of becoming increasingly independent. Most parents figure it out pretty well, and most children play into this process pretty well. When a child has a severe psychiatric illness and is in a situation in which he or she is in real danger, somebody may have to intervene physically. As we do what is necessary for safety, we need to keep in mind that we are interfering with and possibly damaging the child's developmental process.
Therefore, we must avoid using force with children and adolescents. In many cases, this practice can be done through better management that includes developing an individualized care plan, building an alliance with the child and her or his family, and understanding that family's culture...
... Mechanical restraint, seclusion in a locked padded cell, or chemical restraint are totally inappropriate and should be disallowed in programs working with children.
I agree. It's one thing to talk about restraints within the context of an unforeseen emergency and in a situation where the child is about to seriously harm themself or others. It's another thing to plan on using restraints as an aversive consequence for behavior. Although some aversive techniques may have some positive effects in some individual cases, this is all so risky that NYS should really have a lot more protections in place than the proposed regulations contain. And above all else, NYSED should begin by first insuring that school personnel have the appropriate training in understanding the causes of a child's behavior and the research-validated methodologies to improve behavior without aversives.
But as much as I've focused on the educational and behavioral issues, the truth is that the new proposals are not really about good educational practices as much as they are about the money.
Stay tuned for tomorrow's installment on the evil financial directive that led to the current situation.