Restraining Wanderers- A Little History

[Trigger Warning: history and images of restraint and restraint related abuse. If you would like to view this post with the images redacted, please see the image-less version.]

Wanderers- people with Mental Health or Developmental Disabilities who “wander” off. The most common image of a wanderer is an older adult with dementia. I know that- before her health failed- my great grandmother ended up in a locked ward at a nursing home- the “wanderer’s ward.”

A little more relevantly, a number of Autistics are or were wanderers, myself included.

One afternoon when I was in 1st grade, a teacher’s aide called my mother to let her know that she had some concerns. I wasn’t making it into the class room- I would get off the bus and wander around the school yard, looking at all the little things that exist in yards on a warm fall day. If I *did* make it into the class I would end up wandering the halls when the teacher would send me to the speech room. This was in addition to other in class things, too. At this point, my mother demanded that they have an aide escort me from the bus to the class, and my “services” began. This was a year before Asperger’s would be added to the DSM IV.

The reason I bring this up now is because the CDC put in their recommendations for the ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification; the US government’s official system of assigning codes to medical diagnoses and procedures). In this, they included a recommendation for a diagnostic code for “wandering” behaviors. (Here is the Complete PDF of the CDC’s recommendations.)

Here’s the problem- having it listed as a diagnosis/diagnostic code doesn’t add anything to the situation to make the constructive steps they outline happen. What it does is create an excuse or justification for things like restraints. Wandering behavior sure has in the past.

Image of a bed with slatted walls and a slatted lid, so that it is basically a wooden cage, on display in lobby of Peoria State Hospital. Sign above the crib reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."n care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

Cage on display in lobby of Peoria State Hospital. Sign above the cage reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

The Utica Crib was developed at the New York State Lunatic Asylum in the  19th century. It was based on a French design, but the Utica Crib incorporated the slats. It was used to keep people who might get up and wander around at night in bed. This would allow a smaller staff, or even enable another problem- having other patients do a percentage of the care work. This issue was more prominent at Developmental Centers, where those deemed as “higher-functioning” were enlisted as unpaid care-laborers.

An Image of two beds. In each bed is a male presenting person who has straps holding them down across the waist with further restraints binding the feet together and to the bed, as well as the hands.

Patients tied to bed with leather straps -- a medieval method still in general use. Photo by A. Stettner. 1947

Bed Straps were Used in a similar fashion. The patient would be tied to the bed, to limit movement and prevent wandering. In some cases, the individual might be strapped down in the daytime hours as well as at night.

A Young person with dark hair is tied to a wooden chair, a restraining jacket additionally used to restrain them.

from Christmas in Purgatory, 1974; original caption: "Perfected and modified according to circumstances, chains gave way (during the early nineteenth century) to a long series of other ingenuous contrivances, all designed to limit the patient's freedom of movement. According to Oegg, restraining devices were generally thought to be as necessary for the preservation of life as eating, drinking, etc." Emil Kraepelin

This is one of several images of individuals being tied to chairs or Benches from A Christmas In Purgatory, a famous Photo-essay/expose on the conditions of those with Developmental Disabilities in an institution from the early 70’s. (Here’s A child Bound to a bench with hands tied and a nude woman tied to a bench next to several other women.)

This was another method frequently used to restrict wandering behaviors. The patient was tied around the waist to a lead on a bench in a matter that would keep them from getting off the bench. in some cases, additional restraints were used. In the above photograph, the individual wears a restraining jacket, and propped up with a pillow- which would further restrict the amount of movement the lead would allow.

Restraints that further restrain movement can lead to a number of issues, including bed sores and staph (and in more recent times, MRSA) infections.

I researched the local Developmental center’s history when I was in high school, and it required firsthand sources. In interviewing several people who grew up in the surrounding community and spent time on the grounds (usually because a parent worked there), I heard a lot.

The more mild stories were of people with leads tied to outdoor benches, giving them a 5 foot range in which they could wander. Some of the more frightening ones involved peering in a door window as a small child, to see an individual tied to a chair, urine stains on their pants and pooling underneath. When my interviewee had asked what had happened, one of the staff members had replied that he kept “elopeing” and that he still had a couple of hours left in the chair. She remembered hearing him crying to be allowed to use the restroom. This would have been in the 1960s.

Reforms have happened in the recent past. But Abuses still happen, people are still restrained, and bed restraints of various sorts are still used on night time wanderers. Presenting a code for this behavior just adds one more thing to legitimize some very damaging approaches to people who have a long history of abuse.

It isn’t some distant fringe that advocates restraints. In researching this post, I cam across repeated examples of this. Modern versions of the Utica Bed, but now made with mesh and external zippers, marketed to parents of children who wander. In 2005, the FDA had to issue an alert on Vail Beds because of safety hazards.

Older Adults with dementia are put in “Gerichairs”- geriatric wheelchairs that bind the user to the chair, too often in a way that prevents the user from unbinding themselves. While they can be useful tools for those who need the physical support, when used as a restraint tool it can be dangerous. Bedsores and other infections are common remarks on the use of these chairs. (An FDA statement on improper use of geriatric equipment.)

These abuses are not only in our past. Pretending otherwise just endangers people. I strongly believe that the implementation of a wandering diagnostic code would only add a justification to a group of people who already invoke their own personal difficulties as reasons for abusive behavior.

(Please Sign ASAN’s petition against the Implementation of this abuse enabling code. You can read more about it at the above link.)

Seclusion and Restraint- An Update

Back in May I covered The Ed and Labor Hearing on Seclusion and Restraint. This week, there is an update on that front- Chairman Miller, Representative McMorris Rodgers and Senator Dodd introduced Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) and Preventing Harmful Restraint and Seclusion in Schools Act (S.2860). You can watch the press conference that was held on this here (WMV) or read the Press Release.

Many organizations and coalitions applaud this introduced legislation, Saying that it is a big step for the rights of students across the country. Justice For All Action Network released a statement (Which you can read at ASAN’s site) stating that they were pleased as it has been one of the key components of their agenda. And Families against Restraint and Seclusion certainly see this as a step forward.

However, in the meantime between now and when the bill passes into law, a lot of things could change, and a lot of things are terrifyingly staying the same. Michael E. Robinson* of Parents United For Special Education recently distributed information about a case of school abuse in Cobb County, Georgia involving a 13-year-old Autistic student. For that young Georgian, the fact that people in DC have introduced legislation doesn’t take back the abuse he’s suffered since the May Hearing. Robinson also comments that he believes “it’s a shell that will need to be amended with some strong and heavy additions” and calls for the president to speak on the issue in attempt to get it the attention it deserves.

There is some legitimate Criticism of the bill as it stands now. As blogger Astrid writes in her post, certain phrases are really subjective, such as imminent danger.” This has been a common concern about laws surrounding this issue, especially in Florida where it has been brought up over and over again. Too often, aides interpret situations that are not ones of true imminent danger as such, resulting in an escalation. These false positives are often reported vaguely, and as a result the truth of the incident is left in a he-said-she-said battle.

Another concern is that because the “teeth” of the bill is left to the states, the effectiveness- or even swift implication- of the bill is impaired or even neutered out completely. One of the other issues mentioned in the debates about Florida’s regulations is that the lack of consequences make the regulations useless. The bill states at Sec6(a) that the states will have 2 years to come up with state level regulations that must include enforcement (Sec 6(a)(1)(B)), among other things. My question is what is to happen in the meantime? And while there are measures to prevent them from delaying the process past the 2 years, there are no suggestions as to the minimum enforcement standards.

Another issue that I am worried about is that Section 5(a)(4) will be used to prevent parents from specifying their wishes concerning the school’s policy on the restraints the bill does allow. Sec.5(a)(4) states that Seclusion and restraint my not be written in as a planned intervention into an IEP or other plan. While this is intended to prevent schools from pressuring parents into consenting to Seclusion and/or restraint in a child’s IEP, I fear that some schools might use this to justify restricting the amount of say parents have in mitigating issues with school policy.

Even with these concerns, though, I think that this bill represents a great step forward for all students. Hopefully it will result in fewer students being injured, tortured, or even killed in our schools.

Wright’s Law has not yet posted its analysis, but their post on the bill is pretty good and they expect the analysis post to happen in the next week. I’m interested to hear their list of pros and cons- and hopeful that they will be able to clear up some of my concerns. After all, I’m not a lawyer, just someone who wades through legalese out of fun and need!

I’m also interested in other opinions on the bill as it progresses through the House and Senate, and am curious as to how it will be strengthened- or weakened.

* Please contact me if you get this so that I can link you in and provide readers with more information.
NOTE: if you have links to further commentary about criticism of the bill, please let me know.