Welcome to the TBI-HELP Live Chat

Today's topic is: "Community Support for People with Difficult Behaviors"

Our Guest is: Dr. Timothy Feeney, Program Director, Neurobehavior Resource Project, Wildwood Institute

[19:02:24] Mod: Good evening! Tonight we are very happy to have Dr. Tim Feeney as our guest speaker. He is the Director of the Neurobehavior Resource Project at Wildwood Institute. Dr. Feeney's topic for this evening is community support for people with difficult behaviors.
[19:02:42] Mod: Welcome Dr. Feeney!
[19:02:42] timfeeney: hello and thanks for having me back!
[19:03:24] Mod: What are common types of "challenging behavior" after a person has sustained a TBI?
[19:03:59] timfeeney: There are two general categories of problems: the first, are those that are best categorized as Behavioral excesses or behaviors like impulsiveness, anger management and the like and behavioral deficits or behaviors that result in a lack of interaction with the environment
[19:07:00] Mod: Rail: How often are difficult behaviors an issue and how can they be supported in the community as well as home?
[19:06:25] timfeeney: good question rail.  It's hard to give a definitive answer about the frequency of difficult behaviors.  I do know that difficult behaviors result in decreased participation in community activities, reduced vocational success, and increased burden on the families of those with behavioral challenges. As for how folks and be supported, well we've found in the past 6+ years that folks with some pretty significant behavioral challenges can be supported in their home environments as long as those supports are provided in a collaborative manner
[19:10:36] Mod: Rail: Is there a general measure of "recovery" that would take the difficult behaviors "out of doors" so that the community can become involved?
[19:09:48] timfeeney: Again good question Rail! It used to be that recovery was measured using a set of medical or rehabilitation scales, the Racho Los Amigos Scales and things like that but more recently, measures of supports are a more accurate evaluation that is used - this means trying to determine the levels of support that any individual would need in order to be successful in the community of his choosing of course, this means that there is some variability in those supports based on where a person would choose to live - so supports in Queens would be different than supports in Westchester County or Ames Iowa
[19:16:07] Mod: Susan: What tips can we get for "helping" people realize that just because someone with a TBI exhibits juvenile behavior, they are an adult and should be treated as one?
[19:15:36] timfeeney: Great question, Susan!  We usually begin by framing the issue this way: It's important to get a general view of the context of the problem or understand the nature of the times, places, events, in which problem behaviors emerge, and then identify the times, places and events, that problems don't occur the idea is to create the "whole picture" - tell the story not simply report the news!
[19:20:20] Mod: Can U comment on the incidence of Kluver Bucy syndrome (abnormal biting, chewing, eating, etc) post TBI and the RX?
[19:20:03] timfeeney: In my 15 years, I've only seen one or two Kluver-Bucy behavioral difficulties, and to be honest, they were both in an impatient psychiatric setting - I've not ever worked with anyone with the hypersexuality and hyperaroused behavioral patterns typically associated with K-B in community settings, the behaviors would simply be too unpredictable and too hard to manage safely
[19:22:49] Mod: Susan: We also get a lot of "he's just playing" as a response to cognitive deficits such as not being oriented to time and place, forgetting someone's name, etc. This is very frustrating both for the person and us, the family to not get thru to professionals that still don't get it.
[19:24:24] timfeeney: Susan, we usually respond to those kinds of responses by inviting the professionals (and everyone) to enter a process of hypothesis testing - or creating a series of questions to answer in an organized manner so that we can all come to some kind of understanding of the events and times that behaviors emerge. 
[19:26:59] Mod: Susan: I realize that some of the most annoying and challenging behaviors can sometimes become worse when attention is drawn to them, a reward of attention for negative behavior is still a reward. How can we address this behavior without seeming to reinforce it?
[19:27:16] timfeeney: You know "attention" is an interesting thing, there are qualitative differences in the types of attention that people find reinforcing, some like proximity, others like it when 'you simply talk to them', and others like "Purple Rage"! so the 1st issue is to try and figure out the nature of attention that an individual might like, once that's done, look at how that person can get attention in another way. In addition, what other behaviors can be taught that the person can use that are as efficient and effective at eliciting the same outcome. So, how can I get attention in a positive way instead of a negative way.
[19:31:43] Mod: Jane: How do you know the difference between a cognitive deficit and someone that is just acting out? With a TBI it is difficult for me to make that distinction?
[19:32:59] timfeeney: OK, Jane, I suppose my 1st answer would be in the same realm of the Hypothesis testing approach I mentioned earlier, or setting up experiments to test your hypotheses across people, settings, events, and the like - it's not at all uncommon for an individual to behave differently in different contexts, so this information would be very helpful in determining the reasons for a particular behavior or kinds of behaviors.
[19:36:48] Mod: Susan: Lets say they keep interrupting a conversation, you might use nonverbal communication instead of stopping the conversation which then focuses on them?
[19:37:10] timfeeney: OK, Susan, let's think about that. Yes, you might want to try non-verbal communication or you might want to move away, or you might want to tell the person that their communication is not relevant to the topic at hand. It depends on your relationship with the person and the contexts in which the behaviors occur we often simply start conversations with a specific goal - say it right out loud - and then when folks interrupt or begin to talk off topic, we remind them with at question like: "What are we talking about?" or "Is that what we were taking about" in order to get things back on track.
[19:42:20] Mod: Susan: What do you think of artificial rewards as tokens or time outs to modify behavior?
[19:41:57] timfeeney: Now, Susan, I've got to make a confession here, I don't like tokens or time outs. Why? Two reasons, one having to do with the pathophysiology - that is folks with brain injuries often don't learn as effectively with consequence oriented approaches to intervention. Damasio and colleagues have eloquently demonstrated this. The 2nd is that tokens and such are typically only effective in controlled env'ts and community settings are not very well controlled. Yes, lots of traditional centers used token systems, despite the experimental evidence indicating that they have little long term effect on an individuals behavior.
[19:50:26] Mod: Rail: Do all PT's discharged home have community involved support or are some never introduced to the community?
[19:51:00] timfeeney: Rail, you asked about the community supports available to folks. The truth is that the amount of support that they receive is often a function of their age of injury and their pre-injury status. So, children often have more supports available to them, adults with psychiatric histories might have services available through the mental health system, folks with substance abuse issues might find supports through SA services, the biggest problem is often the fact that there is little collaboration between any of these systems and lots of folks fall through the cracks.
[19:52:54] Mod: What sort of support is available for children with TBI that exhibit challenging behavior as they participate in the school system?
[19:53:46] timfeeney: OOPs, lets answer the kids with TBI question! The federal education law IDEA requires that schools provide classified students with a systematic approach to behavioral challenges, this means that schools must assess the functions of behaviors, known as a functional behavior assessment and that there must be some kind of behavior plan developed to address the problem behavior. Unfortunately, the support that schools are required to provide typically does not include support for the family's in their homes.
[19:57:41] Mod: Susan: What can we do to gain support for community integration as most insurance cos do not put much value on that and therefore don't pay for it. How can we help to change that, any thoughts?
[19:57:56] timfeeney: I think that the 1st issue is to help folks see that support for folks in the community is not a COST, but an INVESTMENT. In other words help the folks who have the purse strings see that the costs for NOT providing community supports - for keeping folks institutionalized - are actually higher in both the short and long term than creating supports for folks in the community. WE've discovered that it's actually less expensive to support the majority of folks with real challenging behaviors in the community than in institutional settings. 
[20:00:56] Mod: Our time is almost up. I would like to extend my appreciation towards the audience for participating in the chat tonight. I would also like to thank Dr. Feeney for once again providing us with an excellent and informative chat session. We hope that Dr. Feeney can join us again sometime in the future. Good night- be safe -and we look forward to hearing from you all again?
[20:01:56] timfeeney: Thank you - it always goes by so darn fast, I've got to type faster!