AACRC in Jersey City, Part Two

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

After the two day intensive autism workshop, I continued to make many great connections and learn a lot that I will be taking back to Michigan. The next three days of AACRC were definitely just as invigorating as the first two!

A significant part of the second half of the conference had to do with continuing to reduce restraint and seclusion in residential care. Residential care, for those less familiar (and it keeps a low profile) is an intermediate level of intensity for kids – mostly teens – who no longer have the acute stabilization needs that justify a psychiatric hospitalization but also are not ready or able to return to the community. It represents an ongoing process to make life for these kids both more therapy/improvement focused and also do this in a way that limits the restrictions placed on them. In the “old” days, these kids ended up in “institutions,” which were typically locked facilities, that, honestly, focused on warehousing children rather than helping them thrive. There was some limited therapeutic component to these programs, but the goal was rarely community re-integration, and most people who fell into this “system” we’re slated to spend the rest of their lives in it. There was usually little, if any attempt, also, for children to be engaged in the community, doing all the things their peers were doing, while still being based out of the treatment facility. 

The “State Psychopathic Hospital” operated by the
University of Michigan in the early 1900s

The residential treatment center was a big improvement over the institution because it was designed to continue stabilizing these kids (and adults as well), give them skills, and teach them to function in the community, with the goal of getting as many kids as possible back into community placements – back to their birth home, to  extended family, or into a new adopting family. Those who could not achieve these goals could still at least step down to a “group home,” where they would have freedom of movement and some self-determination. 

Nationally, there a large number of kids in residential care. Actually getting a firm estimate, although these are individual American citizens, is surprisingly challenging. Magellan estimated that the number of children receiving this kind of care peaked around 250,000 in 2000. This number has been going down slowly over time, both due to cost pressures and due to programs that more effectively serve these kids in the community, and some sources estimate the number has gone down 30-50% in the last 15 years. Interestingly, however, there is substantial variation from state to state in this practice, with some rarely choosing this level of care and some doing so with surprising regularity. Some people argue strongly that the goal should be complete elimination of residential care, over time. Others suggest that this is really a “right-sizing” problem in residential youth care, with some capacity that is not needed (because it’s in the wrong place or offers the wrong service) and some capacity that is needed but not available. 
Residential treatment homes typically are still secured in some fashion – either via staff supervision of children by itself or this in combination with physical locks. This varies to some extent with the children (for instance, many of the nonverbal teens with autism we serve are very low functioning, and there would be significant injuries of them being hit by cars or otherwise injured if they were not closely supervised outside of the buildings). Kids frequently have their own room, for privacy, are allowed to have their own things, and participate in a range of regular-kid activities (dancing, sports, games, crafts) on the “milieu.” They also receive individual and/or group psychotherapy, physical, occupational, and/or speech therapies, and schooling. 

Kids in these programs typically have a fairly dense schedule of activities, including many opportunities to pick among activities (with some incentives to try a broad range of things, just like any parent would demand for their son or daughter). The staff members who serve them (typically in a low ratio of one staff member for every 1-3 youths) act in many respect like interim parents, and most programs allow teens to have a mentor or other formal relationship with that one staff member with whom they really bond. Some staff in some programs have been through this process themselves earlier in their lives, and other programs have peer advocates, so that teens have connections with people who know what it is like to survive and thrive through the “system.”

On the negative side, most facilities do use some kind of physical management system (that is, some kind of holding or restraining of children). The best of these systems involve active efforts to avoid physically managing, or “laying hands on” kids, such as using verbal de-escalation, or specific talking tools that help kids help themselves. They also set firm limits on when physical management can be used, generally restricting it to a situation in which there is an imminent danger of the child harming the self or someone else, which cannot be resolved in another way besides physical intervention (See the system we use, the Satori Alternative to Managing Aggression, as an example; this system helps us frequently reduce management by 50+% over prior placements from which our kids transition, which is good, although the evidence basis for physical intervention is surprisingly weak, taken as a whole.) Some programs also use seclusion, or placing a child by themselves in a de-stimulating environment, to “cool down.” Although sensory rooms and other rooms designed to help kids manage their level of stimulation are great, secluding them is something we generally view this as even worse than restraint, because seclusion can be psychologically damaging. It is also particularly open to abuse, much like the solitary confinement system in prisons. However, even in the absence of seclusion, physical management of any kind is still something that the best among us view definitionally as a failure of our system. There were some great talks about taking this approach and creating a system of care in which even very aggressive, challenging behavior can be managed safely without physical intervention. The biggest component of this is actually just a determination (led by us directors and powered by influential leaders at all levels) to push to zero physical management, since this really pushes us to invest more and more in our ability to de-escalate. One of the big points made was that this was really a situation in which success required “shooting for the moon” – that aiming for any less than complete elimination of physical management just isn’t enough. On the other hand, it is very important to not just eliminate restraint without thinking carefully about how kids are kept safe and thrive in a restraint-free environment — one scholar aptly described this danger as “regulatory scotoma.”
Another great topic was working towards a situation where decisions to admit or discharge a child from residential care are made more systematically and consistently based on the interests of the child or adolescent, and not on other reasons like financial utilization management (either in the  sense of the state’s desire to minimize expenditure or the facility’s desire to keep a bed full). There are some great evidence based tools slowly gaining acceptance for this. One thing that was particularly interesting was a “hinge plot” we saw, which showed the length of time for the symptoms of the average teen in residential care to reduce to “catch up” to the average teen in outpatient, community case management. (CCM is a service provided as part of mental health care, sometimes, to help people coordinate various kinds of healthcare needs, for those of you who’ve never run across it. UNICEF actually makes an interesting argument that it has applicability to non-psychiatric medical care as well, particularly in high risk populations.) Anyway, this bogey is actually pretty far out — well past a year, suggesting we may not want to rush to prematurely discharge youth, because this could lead to poor functioning in the community and re-admission, which has been shown to be an issue, this time, already in non-psychiatric aspects of healthcare. I don’t have a copy of that to show (yet), but other studies validate this idea. This Noftle (2011) study, for instance, does show fairly long stabilization timescales, although it suggests that residential care may be most effective for rapid stabilization over the first couple of months of children with the most severe behavior disturbance (this dovetails with what I see informally).
Other studies, like this one, suggest that there is a “time heals all” component to this process, and that intensity of service cannot arbitrarily shorten length of stay – rather, when this happens, the danger of needing re-admission (these quick trips in, out of, and back into the hospital are frequently associated with both bad physical and mental health outcomes).

Interestingly, other studies show the rate of improvement in residential care and outpatient services are actually comparable, although there is some debate over whether the severity of issues teens in residential care deal with are being considered (generally, improvements are faster in “mild” treatment cases, so if RTC can deliver comparable improvement for severe issues in complex teens as CCM does for milder issues in simpler teen situations, this may actually be pretty good!). There is a particularly excellent review that is freely available through PubMedCentral from Sigrid James – her work raises important questions about the bar that we set for making sure that this expensive and restrictive kind of care is applied only where and when it needs to be.
Where these two issues come together, along with other issues such as the need to empower parents (about which I’ve already blogged), and the need to continue pushing for treatment approaches that are evidenced based, where available, and the development of evidence based practices, where none exist, is that twenty-first century residential care must make a better and better case for why we need to separate people – kids and teens especially – from their community roots. In the best of cases, residential care is a core component of a larger strategy to empower parents, give kids skills, and create an environment in which kids can learn to thrive without fear of catastrophic consequences of their mistakes, using residential care as a the plane ticket to a future that involves ongoing safety, a sense of permanent attachment to peers and adults who have made a long-term investment in the youth, and development of a true sense of well being. This requires a much more continuous system of care, with opportunities for teens to step up and down flexibly as they need to, to higher or lower acuities of service. It also requires some constructive thought about programs-within-programs or other techniques to much more tightly provide each teen with the services they need and pare down care that doesn’t take care of them (since that is not care at all). This is a lot harder in behavioral healthcare than physical healthcare, I think (a physician can learn when and how to safely prescribe five new medications far more easily than a psychologist can learn five new evidence based behavioral therapies), but it can and must be done. When we do that, we should sleep well, knowing that, one teen at a time, we are changing the world. 
I hope these thoughts are not too random – this is a little of what I’m bringing home to think about improving our residential adolescent program  to the next level, and far, far beyond, even as I fight harder than ever for the autism system I know our kids need. 

2 thoughts on “AACRC in Jersey City, Part Two

  1. This is an extremely interesting post. Sobering in some ways, because of the issues you raise, but clearly underpinned by the right values and a strong sense of empathy. I completely endorse your thoughtful, humane and progressive comments about physical restraint.

  2. Pingback: Of Course Love Wins, But It Has To Be In Your Heart | Mira Charlotte Krishnan

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