Karyn Harvey - Trauma-Informed Behavioral Interventions

T rauma-Informed
Behavioral Intervention

What Works and What Doesnt

Karyn Harvey

2012 by American Association on Intellectual and Developmental Disabilities

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.

Printed in the United States of America

Our lives begin to end the day we become silent about things that matter.

Martin Luther King, Jr.

This Book is dedicated to Steve Harvey, my dear husband

Special Thanks to Daisaku Ikeda for shining the light that illuminated my life; to Merle Kougle for her exquisite assistance; to Ryan and Tara Harvey for being wonderful and patient offspring; to all my friends and co-workers who guided me with thoughts, ideas, and insights; and finally special thanks to my mother, Violet Manon.

Table of Contents

Introduction1

The Solution Becomes the Problem4

The Functionality of the Functional Assessment17

Prevention Before Intervention29

The Dangers of Misdiagnosis35

Crack Babies, All Grown Up42

The Truth About Trauma51

Stabilization64

Trauma-Informed Crisis Prevention74

Trauma-Informed Crisis Intervention83

Mental Health Plans91

Programmatic Services From a Trauma-Informed Perspective120

Stepping Into the Here and Now 126

Introduction

W hy do we assume that individuals with intellectual disability (ID) who are having behavioral issues are doing so in order to gain some outcome or to manipulate someone? It is because we in the field have long adhered to a behavioral paradigm based on an applied behavioral analysis approach. Rarely do we stop to question this approach.

Recently, I was made aware of a situation in which a traditional behavioral approach was used toward a young woman who had an intellectual disability as well as a hearing impairment. She was repeatedly screaming, crying, and begging for attention. A psychologist completed a functional assessment and concluded that this individual was doing so for attention. One medical examination had been completed in which a general practitioner determined that she did not have anything physically wrong with her. She had not been referred for further testing, although she complained of pain. People without disabilities are often referred for an MRI, CAT scan, or sonogram if there is pain but no obvious cause. This was not done for this woman. The psychologist was confident in the assessment that there was no physical problem. He wrote a plan that clearly instructed staff to ignore much of the screaming. Several weeks later, the woman died, cause unknown. The autopsy was inconclusive.

This is not the first time I have witnessed such a tragedy in the field of intellectual disability. Cries for help are often interpreted as manipulations for attention; not unusually, the procedure of choice is to ignore the cries and pay attention only to appropriate verbalizations (Clements & Martin, 2002). Imagine if you were unable to garner appropriate medical attention, even though the system of care was available to you. Imagine if however much you complained, people ignored you and rebuked you for your complaints whenever you were addressed. Imagine if the complaint you were making turned out to be a matter of life and death.

This woman was in a state of physical trauma. The example is a harsh one, but it did occur. There are also many, many individuals with ID whose trauma is emotional. We may, in fact, be misunderstanding many behavioral issues when the core of these issues is the expression of emotional trauma, not attempts to gain a reaction. The profile of an adult with both ID and a behavior problem looks alarmingly similar to the profile of an adult with posttraumatic stress disorder (PTSD). According to Judith Herman (1997), there are three outstanding symptoms of PTSD: (a) the person feels unsafein cases of adults with ID, many acts of aggression occur in circumstances in which the individual feels threatened or unsafe; (b) the person feels devaluedoften in the past, the feelings of individuals with ID were not taken into account, nor were they treated humanely during the trauma, and now they are carrying this feeling of not being valued or valuable with them; and (c) the person feels and appears to be disconnected from others.

I believe that these symptoms directly reflect the condition of many individuals with ID. They do not feel safe, they do not feel connected to the larger worldor, in many cases, to others at alland they do not have power. People with ID are often the least valued, most ignored, and most vulnerable in their environment.

The Diagnostic and Statistical Manual of Mental Disorders ( DSMIVTR ; American Psychiatric Association, 2000) defines PTSD as

the development of characteristic symptoms following exposure to an extreme traumatic stressor involving direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to the physical integrity of another person, or witnessing an event that involves death, injury, or a threat to the physical integrity of another person, or learning about unexpected or violent death, serious harm or threat of death or injury experienced by a family member or close associate. The persons response to the event must involve intense fear, helplessness or horror. (American Psychiatric Association, 2000, p. 463)

Anyone who has seen Geraldo Riveras Willowbrook (Primo & Rivera, 1972) expos or known individuals who have survived long-term institutionalization will recognize that those individuals experiences match the experiences described by the DSM . It is easy for those of us who work with people with ID to forget the trauma that many have endured. It is also easy for us to underestimate its impact. This impact has far-reaching repercussions, manifesting in a variety of ways that we may very well be misunderstanding.

It is possible that many of the responses of individuals with ID that we call behavioral issues might actually be manifestations of trauma and trauma-based responses. It is traumatic to live in this society with an intellectual disability. Further experiences of abuse, neglect, and/or invalidation compound the trauma. I contend that the manifestation of trauma and its impact can look very behavioral but might, in reality, be trauma-based responses, manifesting symptoms of PTSD.

In this book, I will first outline the ways in which individuals with ID may have actually been damaged by our behavioral approach to their day-to-day actions. Next, I will attempt to demonstrate what has been missed through this approach: Needs have not been met, individuals have been misdiagnosed, and trauma responses have been triggered through the exclusive use of behavioral controls, both positive and negative. I will attempt to demonstrate the ways in which this damage has been done.

Finally, I will outline what I believe should be done instead. In Chapters 710, I explore the topics of stabilization, prevention, intervention, and the mental health plan. In Chapter 11 I propose a model of behavioral intervention that does not require the use of restraints or contingencies, instead promoting safety and security and addressing the outstanding issues around trauma. Many case studies will be discussed but all the names and relevant details have been altered to protect individuals, staff, and agencies.