Journal of Mental Health Research

in Intellectual Disabilities, 6:280303, 2013

Copyright Taylor & Francis Group, LLC
ISSN: 1931-5864 print/1931-5872 online
DOI: 10.1080/19315864.2012.700684

Treating Individuals With Intellectual

Disabilities and Challenging Behaviors With
Adapted Dialectical Behavior Therapy

JULIE F. BROWN
Justice Resource Institute-Integrated Clinical Services
Warwick, Rhode Island

MILTON Z. BROWN
Department of Psychology
Alliant International University

PAIGE DIBIASIO
Justice Resource Institute, Supports to Empower People (STEP)
Cranston, Rhode Island

Approximately one third of adults with intellectual and develop-

mental disabilities have emotion dysregulation and challenging
behaviors (CBs). Although research has not yet confirmed that
existing treatments adequately reduce CBs in this population,
dialectical behavior therapy (DBT) holds promise, as it has been
shown to effectively reduce CBs in other emotionally dysregulated
populations. This longitudinal single-group pilot study examined
whether individuals with impaired intellectual functioning would
show reductions in CBs while receiving standard DBT individual
therapy used in conjunction with the Skills System (DBT-SS), a DBT
emotion regulation skills curriculum adapted for individuals with
cognitive impairment. Forty adults with developmental disabilities
(most of whom also had intellectual disabilities) and CBs, includ-
ing histories of aggression, self-injury, sexual offending, or other
CBs, participated in this study. Changes in their behaviors were
monitored over 4 years while in DBT-SS. Large reductions in CBs
were observed during the 4 years. These findings suggest that mod-
ified DBT holds promise for effectively treating individuals with
intellectual and developmental disabilities.

Address correspondence to Julie F. Brown, Justice Resource Institute-Integrated Clinical

Services, 2364 Post Road, Warwick, RI 02886. E-mail: [email protected]

280
 DBT for Individuals With IDD 281

KEYWORDS intellectual disabilities, dialectical behavior therapy,

coping skills

INTRODUCTION

Many individuals with intellectual and developmental disabilities (IDD) expe-

rience serious challenges. Beyond cognitive limitations, some have additional
problems such as comorbid psychiatric disorders, deficits in adaptive coping
skills, and excessive maladaptive behaviors. Challenging behaviors (CBs) are
defined as culturally abnormal behavior(s) of such intensity, frequency, or
duration that the physical safety of the person or others is likely to be placed
in serious jeopardy, or behavior which is likely to seriously limit the use of,
or result in the person being denied access to, ordinary community facilities
(Emerson et al., 2001, p. 3). Research studies have documented that CBs are
often found in individuals with IDD, including dangerous behaviors such as
aggression, self-injury, sexual offending, fire setting, and stealing, although
prevalence estimates vary tremendously across studies. For example, esti-
mates of the prevalence of aggression range from 10% to 45% (Emerson
et al., 2001; Grey, Pollard, McClean, MacAuley, & Hastings, 2010; F. Tyrer
et al., 2006). There is a broad consensus that behavioral problems impact
the lives of many people with IDD and create significant challenges for
support providers. Providing necessary support and safety to both IDD indi-
viduals and the community is a challenging and expensive task. High levels
of supervision; staff injuries; staff turnover; out-of-state placements; and uti-
lization of multiple state and local disabilities, mental health, and corrections
resources are common factors that increase the costs of service delivery.

ETIOLOGY OF CHALLENGING BEHAVIORS

Numerous complex issues must be effectively treated in order to achieve

significant long-term reductions in CBs in individuals with IDD. Many of
these behaviors are associated with poor coping skills (Janssen, Schuengel,
& Stolk, 2002; Nezu, Nezu, & Arean, 1991; F. Tyrer et al., 2006), high levels
of frustration (F. Tyrer et al., 2006), depression (Reiss & Rojahn, 1993), mood
swings (F. Tyrer et al., 2006), high levels of stress (Janssen et al., 2002),
and insecure attachments (Janssen et al., 2002). A cross-sectional study of
296 adults with mild/moderate IDD who exhibited aggression found that
increased levels of mental health problems (psychosis, autism, and mood dis-
orders), impulsivity, antisocial tendencies, less ability to tolerate frustration,
and lower levels of social and vocational involvement were associated factors
(Crocker, Mercier, Allaire, & Roy, 2007). Although the people with IDD who
demonstrate behavior problems are a heterogeneous group, it appears that
282 J. F. Brown et al.

emotion and cognitive regulation skills deficits (Janssen et al., 2002; Nezu
et al., 1991; F. Tyrer et al., 2006; Whitman, 1990) and mental health issues
(Crocker et al., 2007; Reiss & Rojahn, 1993; F. Tyrer et al., 2006) contribute to
their behavioral dysregulation. Given that emotion dysregulation appears to
be a key contributing factor to CBs, it is essential that a treatment of behav-
ior problems build self-regulation capacities. Although research addressing
emotion dysregulation in the general population is expanding, unfortunately
significantly less research exists on emotion regulation treatment for people
with IDD (McClure, Halpern, Wolper, & Donahue, 2009).

TREATMENT OPTIONS

There are many studies suggesting that psychosocial interventions reduce

CBs in individuals with IDD (Benson, Rice, & Miranti, 1986; Carr & Carlson,
1993; S. T. Harvey, Boer, Meyer, & Evans, 2009; Heyvaert, Maes, & Onghena,
2010; Luyben, 2009; Neidert, Dozier, Iwata, & Hafen, 2010; Prout & Nowak-
Drabik, 2003; Willner, 2005). However, due to the difficulties conducting
research on this population, most studies have significant methodological
limitations, including nonrandomized designs, and inadequate assessment
of outcomes (Gustafsson et al., 2009; Hassiotis & Sturmey, 2010; Keenan
& Dillenburger, 2011; Willner, 2005). We are not aware of any treatment
studies that have reported any evidence that treatments resulted in clinically
significant changes in CBs. Without evidence of clinical significance (e.g.,
improved remission from severe maladaptive behaviors) we do not know if
research participants continued to engage in severe maladaptive behaviors,
even though they may have occurred less often, on average.

Psychosocial Treatments
Because the side effects of psychotropic medications create serious health
concerns and the lack of strong empirical evidence that they effectively
reduce CBs (Antonacci, Manual, & Davis, 2008; Matson, Fodstad, Rivet, &
Rojahn, 2009; Matson & Neal, 2009; Oliver-Africano, Murphy, & Tyrer, 2009;
P. Tyrer et al., 2008), it is important to identify effective psychosocial treat-
ments for CBs in individuals with IDD in community settings. There is a vast
literature on the effectiveness of applied behavior analysis (ABA) for indi-
viduals with IDD and CBs (Grey & Hastings, 2005; M. Harvey, Luiselli, &
Wong, 2009; Hassiotis et al., 2011; Luiselli, 2009; Luyben, 2009; Neef, 2001;
Neidert et al., 2010; Robertson et al., 2005). In particular, there are numerous
single subject experimental studies supporting ABA with children (Borrero
& Vollmer, 2006; Luce, Delquadri, & Hall, 1980; McGee & Ellis, 2000; Russo,
Cataldo, & Cushing, 1981; Vaughan, Clarke, & Dunlap, 1997) and with adults
 DBT for Individuals With IDD 283

in highly controlled environments (e.g., in hospitals and institutional set-

tings; Frederiksen, Jenkins, Foy, & Eisler, 1976; Iwata, Smith, Mazaleski, &
Lerman, 1994; Roscoe, Iwata, & Goh, 1998; Shore, Iwata, Vollmer, Lerman,
& Zarcone, 1995). We searched several electronic journals and databases
(e.g., PsycInfo and PubMed) and Internet search engines for relevant sin-
gle subject experimental studies and randomized controlled trials evaluating
psychosocial interventions for CBs in adults with IDD in outpatient com-
munity settings, but the only study of ABA we found was a randomized
controlled trial (RCT) that found support for ABA (Hassiotis et al., 2009). This
apparent lack of research may reflect the exceptional challenges to imple-
menting ABA with adults living in community residences, including the many
sources of stimulus control and reinforcement of CBs; many fewer opportu-
nities for outpatient treatment staff to control antecedents and consequences;
and the reduced opportunities for outpatient treatment staff to observe low-
frequency CBs (Baer, Wolf, & Risley, 1987; Grey & Hastings, 2005; Neef, 2001;
Whitaker, 1993). Our search yielded only one other methodologically strong
study evaluating changes in CBs, an RCT that found support for cognitive
behavior therapy (CBT; Nezu et al., 1991). We found eight other studies (all
RCTs), of which six did not measure CBs (e.g., only self-reports of anger
intensity; Hagiliassis, Gulbenkoglu, Marco, Young, & Hudson, 2005; Rose,
Dodd, & Rose, 2008; Rose, Loftus, Flint, & Carey, 2005; Rose, OBrien, &
Rose, 2009; Rose, West, & Clifford, 2000; Willner, Jones, Tams, & Green,
2002). McPhail and Chamove (1989) did not mention what type of measures
were used in their study of relaxation or how their data were analyzed, and
initial treatment gains were completely lost at the 3-month follow-up. Lindsay
et al. (2004) reported significant treatment effects, yet substantial missing
data and failure of randomization were limitations of this study. Most of
these studies were vulnerable to bias by not assessing outcomes using blind
raters and not analyzing the impact of missing data when follow-up data
were available. Although the studies by Nezu et al. (1991) and Hassiotis
et al. (2009) were methodologically strong and showed that CBT and ABA
can effectively reduce CBs, it was not clear if the posttreatment scores indi-
cate remission from severe maladaptive behaviors because no cutoff scores
for the outcome measure were reported. It is possible that many individ-
uals with IDD in those studies continued to engage in severe maladaptive
behaviors, even though they occurred less often.

Dialectical Behavior Therapy

Because there is not yet sufficient evidence that existing interventions suf-
ficiently improve severe CBs of adults with mild/moderate IDD who live
in community-based settings, it is reasonable to consider exploring addi-
tional options for evidence-based interventions. Because numerous complex
issues must be effectively treated in order to achieve significant long-term
284 J. F. Brown et al.

reductions in CBs in individuals with IDD, it is clear that a sophisticated

and comprehensive evidence-based treatment is needed. Dialectical behav-
ior therapy (DBT) (Linehan, 1993a) is an one such treatment that is well
suited for treating severe CBs because it incorporates the core strategies uti-
lized in ABA and CBT approaches and the top therapy agenda is always to
explicitly and thoroughly target severe CBs. DBT is an evidence-based, com-
prehensive, multimodal, cognitive behavioral treatment that was designed
to treat long-standing, rigid, reinforced patterns of emotional, cognitive, and
behavioral dysregulation and coexisting Axis 1 and Axis 2 diagnoses. Several
randomized controlled trials (with non-IDD participants) have been com-
pleted highlighting the efficacy of DBT in reducing self-inflicted injury and
days of hospitalization and improving therapy retention and global func-
tioning for women with borderline personality disorder (BPD; e.g., Linehan
et al., 2006; van den Bosch, Verheul, Schippers, & van den Brink, 2002;
Verheul et al., 2003). DBT has been shown to effectively treat other popula-
tions with Axis I and Axis II diagnoses and severe dysregulation. Randomized
controlled studies support the efficacy of DBT in treating substance abuse
(Linehan et al., 2002; Linehan et al., 1999), eating disorders (Safer, Telch, &
Agras, 2001; Telch, Agras, & Linehan, 2001), and depression in older adults
(Lynch, Morse, Mendelson, & Robins, 2003).

DIALECTICAL BEHAVIOR THERAPY AND I NDIVIDUALS WITH IDD

Several studies suggest that DBT is promising for individuals who have IDD
and challenging behaviors. Dunn and Bolton (2004) published a case study
describing the application of DBT with an individual who demonstrated chal-
lenging behaviors. Lew, Matta, Tripp-Tebo, and Watts (2006) reported pilot
data that showed significant improvement for eight women who demon-
strated challenging behaviors. Verhoeven (2010) published a case study that
integrated DBT and the treatment of an individual with IDD and sexual
offending issues. Sakdalan, Shaw and Collier (2010) completed a pilot study
with a forensic sample of nine individuals with IDD and improvements
across all measures were noted. This study seeks to expand the emerging
evidence for DBT with this population by conducting a pilot study with a
larger sample and more rigorous measurement of CBs to explore clinical
significance.
DBT modified for individuals with IDD. DBT is a comprehensive treat-
ment that integrates not only elements of CBT and ABA but also expands
the spectrum of strategies to address broad-based, lifelong regulatory deficits.
Beyond standard CBT, DBT includes mindfulness practice, dialectical strate-
gies, case management supports, a suicide protocol, and offers a coping
skills group (in addition to weekly individual therapy sessions; Linehan,
1993b). The treatment blends acceptance strategies (validation) and change
 DBT for Individuals With IDD 285

strategies (e.g., behavioral strategies such as positive reinforcement, contin-

gency management, and exposure) to simultaneously treat self-invalidation
and reinforced patterns of escalating emotions, which are underlying factors
associated with challenging behaviors.
Adapted skills training. The Skills System (Brown, 2011) is a modified
emotion regulation skills curriculum designed for individuals with IDD. The
Skills System is designed to build mindfulness, interpersonal effectiveness,
emotional regulation, and distress tolerance capacities, as in standard DBT
skills modules (Linehan, 1993b), but the adapted curriculum significantly
modifies language and format to accommodate the specific learning and pro-
cessing needs of the population. In light of the complex needs of individuals
who have IDD and CBs, combined with the absence of clear data indicating
an effective treatment for this population, the adaptation of DBT for people
with IDD is justified. Offering long-term DBT in conjunction with the Skills
System (DBT-SS) is justified to enable effective transitions to increasing levels
of independence within residential and vocational settings.

METHODS
Participants
There were 40 participants in the study. Eighty-five percent were male
(35 men and 5 women). Their ages ranged from 19 to 63 (M = 30.8,
SD = 10.1), and their IQs ranged from 40 to 95 (full-scale IQ [FSIQ] M = 60.8,
SD = 11.5). Table 1 lists the gender, age, FSIQ, challenging behaviors, and
mental health diagnoses of each participant. Most of the sample (82.5%) had
an IQ of 70 or below (intellectual disability), and 18% were diagnosed as hav-
ing autism spectrum disorders. All participants had a history of severe prob-
lem behaviors and most (67%) had engaged in four or more of the behaviors
during their lifetime (M = 4.2). The behaviors, number of participants engag-
ing in these behaviors, and outcomes of behaviors are listed in Table 2. All
but 2 participants (95%) had at least one Axis I disorder (Mdn = 2). As can be
seen in Table 3, the most common disorders were mood disorders, anxiety
disorders, sexual disorders (e.g., pedophilia), and BPD.
Most of the participants utilized expensive services in the 2 years prior
to DBT-SS. Eleven (28%) were inpatients in a psychiatric hospital, 11 (28%)
were in out-of-state residential treatment (OSRT), and 5 (13%) were in jail
or other locked forensic settings. Ten of the 11 clients in OSRT were in that
setting for the two full years, and one was in OSRT for 16 months. Three of
the clients were in a psychiatric hospital for the full two years, and the total
number of psychiatric inpatient days for the other 7 clients was 315, 28, 16,
16, 12, 7, 7. One client was hospitalized prior to and following admission to
DBT-SS during the time frame of this study, but it was not possible to get the
exact number of days.
 TABLE 1 Demographic Information, Types of Challenging Behaviors, and Diagnoses of Study Participants

Sex Age FSIQ Challenging behaviors Diagnoses

1 Male 29 71 Aggression, self-injury, stealing, hospital, arrests Dementia-head trauma, personality disorder, NOS
2 Male 21 64 Aggression, stealing, hospital Bipolar with psychotic features, anxiety disorder
3 Male 29 63 Aggression, sexual offense, fire setting, substance abuse, Impulse control disorder, NOS; alcohol abuse,
stealing, hospital, arrests cannabis abuse
4 Male 22 50 Aggression, sexual offense, stealing Conduct disorder
5 Male 22 56 Aggression, sexual offense, fire setting, hospital, arrests Pervasive developmental disorder, conduct disorder,
OCD
6 Male 21 80 Self-injury, hospital Schizoaffective disorder, ADHD
7 Male 37 57 Aggression, fire setting Intermittent explosive disorder
8 Male 19 55 Aggression, fire setting, hospital, arrests Impulse control disorder, NOS, PTSD, borderline
personality disorder
9 Male 21 95 Aggression, sexual offense, fire setting, stealing, hospital, Aspergers disorder, anxiety disorder
arrests
10 Male 24 64 Aggression, fire setting, self-injury, hospital Impulse control disorder, NOS, OCD

286
11 Male 22 73 Aggression, self-injury, hospital Pervasive developmental disorder, Aspergers disorder,
intermittent explosive disorder
12 Male 40 40 Aggression, sexual offense, fire setting, stealing, arrests Intermittent explosive disorder
13 Male 22 73 Aggression, sexual offense, stealing, hospital Pervasive developmental disorder, OCD, pedophilia,
oppositional defiant disorder
14 Male 39 48 Aggression, sexual offense, stealing, arrests Pedophilia, voyeurism, exhibitionism
15 Male 37 77 Sexual offense, self-injury, hospital, arrests Pedophilia
16 Male 23 68 Aggression, substance abuse, self-injury, suicide attempts, Psychotic disorder, NOS, polysubstance abuse
stealing, hospital, arrests
17 Male 22 50 Aggression, sexual offense, self-injury, stealing Conduct disorder, OCD, exhibitionism
18 Male 27 60 Aggression, substance abuse, self-injury, suicide attempts, OCD, ADHD, borderline personality disorder
stealing, hospital
19 Female 26 56 Aggression, self-injury, stealing, hospital PTSD, borderline personality disorder
20 Male 21 60 Sexual offense Pedophilia
21 Male 28 46 Aggression, sexual offense Intermittent explosive disorder, pedophilia
22 Female 26 67 Aggression, self-injury, stealing, arrests
23 Female 54 50 Aggression, self-injury, suicide attempts, stealing, hospital Dysthymic disorder, borderline personality disorder
 24 Female 28 55 Aggression, self-injury, suicide attempts, stealing, hospital Depression, anxiety disorder
25 Male 29 65 Aggression, fire setting, stealing, hospital Anxiety, depression
26 Male 54 49 Sexual offense, self-injury, stealing, arrests Anxiety, pedophilia
27 Male 39 56 Aggression, sexual offense, self-injury, hospital, arrests Aspergers disorder, intermittent explosive disorder
28 Female 36 60 Aggression, substance abuse, self-injury, stealing, hospital Bipolar disorder, borderline personality disorder,
histrionic personality disorder
29 Male 46 54 Aggression, sexual offense, arrests Depression, anxiety disorder
30 Male 22 59 Aggression, sexual offense, stealing Schizoaffective disorder, oppositional defiant disorder,
intermittent defiant disorder
31 Male 22 60 Aggression, substance abuse, stealing ADHD, Aspergers disorder, intermittent explosive
disorder, alcohol abuse
32 Male 20 61 Aggression, sexual offense, substance abuse, hospital, Conduct disorder, ADHD, sexual abuse of a child,
arrests dysthymic disorder
33 Female 52 60 Aggression, self-injury, suicide attempts, hospital Major depression with psychotic features, borderline

287
personality disorder
34 Male 23 63 Aggression, sexual offense Impulse control disorder, NOS, PTSD, ADD
35 Male 34 60 Aggression, sexual offense, fire setting, substance abuse, Impulse control disorder, NOS, sexual abuse of an
self-injury, suicide attempts, stealing, hospital, arrests adult, voyeurism
36 Male 35 85 Aggression, sexual offense, stealing Depression, frontal lobe syndrome
37 Male 42 49 Aggression, sexual offense, stealing, hospital, arrests Pedophilia, personality disorder, NOS
38 Male 44 49 Aggression, sexual offense, self-injury, stealing Impulse control disorder, NOS, depression
39 Male 36 76 Aggression, sexual offense, fire setting, self-injury, suicide Pedophilia, paraphilia, NOS
attempts, stealing, hospital, arrests
40 Male 40 46 Sexual offense, stealing, arrests Conduct disorder, NOS
Hospital = psychiatric hospitalization; NOS = not otherwise specified; OCD = obsessive compulsive disorder; PTSD = posttraumatic stress disorder; ADHD =
attention-deficit/hyperactivity disorder.
288 J. F. Brown et al.

TABLE 2 Lifetime History of Problem Behaviors and Outcomes (N = 40)

Behaviors %

Suicide attempts 18
Fire setting 23
Self-injury 48
Stealing 65
Aggression 88

Outcomes

Arrests 45
Psychiatric hospitalization 60

TABLE 3 Current Co-Occurring Psychiatric Disorders (N = 40)

Disorder %

Oppositional defiant disorder 5

Psychotic disorder 8
Substance use disorder 10
Attention-deficit/hyperactivity disorder or attention deficit disorder 13
Conduct disorder 13
Intermittent explosive disorder 18
Impulse control disorder NOS 15
Borderline personality disorder 20
Mood disorder 25
Anxiety disorder 35
Sexual disorders (abuse of others) 38
Note. For diagnostic categories, the percentage refers to how many participants had at least
one of the disorders. NOS = not otherwise specified.

Procedure
All participants received comprehensive treatment at Justice Resource
Institute-Integrated Clinical Services (ICS). Most of the participants lived in
community residences with 24-hr supervision, with the exception of 2 indi-
viduals who resided in more individualized settings that provide support
as needed. Residential supports are provided by private provider agencies,
which are funded by the Rhode Island Department of Behavioral Healthcare,
Developmental Disabilities, and Hospitals. This study was approved and
monitored by the Justice Resource Institute Institutional Review Board to
protect the rights of the human participants.
Once potential participants were clearly identified by their primary ther-
apists at ICS, participants were invited to sign informed consent forms for the
study. Written informed consent procedures were adapted by the research
team to meet the developmental needs of participants and completed with
the participant and his or her individual therapist. Next, the primary thera-
pist contacted the support providers by phone, e-mail, and/or in person to
request demographic and behavioral data.
 DBT for Individuals With IDD 289

PROGRAM DESCRIPTION AND I NTERVENTIONS

Treatment at ICS model consists of 1 hr of individual DBT per week and 1 hr

of Skills System (SS) group skills training (DBT-SS). Clients with histories of
sexual offending behaviors receive an additional hour of group per week to
specifically address those clinical issues in addition to the standard DBT-SS.
The DBT-SS individual therapy was adherent to the standard DBT structure of
treatment. No accommodations were necessary related to the DBT (stages of
treatment, hierarchy of targets, assumptions, consultation agreements, phone
calls, and consultation team) described by Linehan (1993a). Modifications
were necessary to the DBT self-monitoring procedures. Clients who have
difficulty reading and writing worked with their therapists to create shift
summary forms that were completed by support staff, documenting adap-
tive and problematic target behaviors to facilitate behavior analysis. Adapted
diary cards were integrated when possible; these forms were individual-
ized, simplified, and used pictures to represent targets and skills. Standard
DBT dialectical strategies, validation, contingency management, exposure,
and DBT stylistic strategies are used. Simplification, shaping, and task anal-
ysis are often necessary when doing these strategies as well as when doing
problem solving, cognitive modification, contingency management, and case
management with this population to be assured the individuals understand
each step within complex, multistep skills.
In addition to in-session use of behavioral strategies typical in standard
DBT (such as contingency management, extinction, and exposure), formal
behavioral treatment plans are used with this population; these often include
the use of tangible rewards for adaptive behaviors and systematic contin-
gency plans to address problematic behaviors. To further accommodate the
learning needs of the clients, a behavioral categorization system is used in
to label increasing levels of intensity of maladaptive behaviors. Through the
process of behavioral analysis the client and therapist classify problematic
behaviors as Red Flags (low intensity), Dangerous Situations (medium), and
Lapse behaviors (high) to clarify phases of the persons escalating chains
of behavior. This framework improves self-awareness and facilitates early
intervention with more adaptive self-regulation alternatives.
The standard DBT skills modules are designed for average-intelligence
learners; the Skills System is a simplified DBT-based coping skills curriculum
that extracts key DBT skills concepts, simplifies the language, and provides
tools that guide the participant through choosing the most effective skills
to manage his or her current situation given his or her level of emotional
arousal. Additionally, DBT-SS therapists promote skills generalization by fre-
quently consulting with the multidisciplinary team of residential agencies,
vocational support teams, psychologists, and medical staff (including the
treating psychiatrist). True to the standard DBT consultation to the client
strategy, DBT-SS therapists strive to balance intervening with other providers
for the client with guiding the client to effectively deal directly with other
290 J. F. Brown et al.

providers. Support staff are offered monthly Skills System training to help
them function as Skills System coaches. Participation in DBT-SS generally
lasts several years.
The ICS clinical team was comprised of the director (who is a licensed,
independent clinical social worker and DBT trainer for Behavioral Tech,
LLC) and two masters level clinicians, all of whom were intensively trained
in DBT through Behavioral Tech, LLC. For the duration of the study, the clin-
icians received weekly individual supervision with the program director and
participated in weekly consultation team following standard DBT protocols
(Linehan, 1993a). DBT experts employed at Behavioral Tech, LLC, rated a
session of the program director and found her session to be in adherence
with DBT.

SAMPLING PROCEDURES
All individuals who were currently receiving services at Justice Resource
Institute-Integrated Clinical Services (ICS) at the start of the study were partic-
ipants in this research. All individuals who receive services at ICS have been
diagnosed with a developmental disability by the Rhode Island Department
of Behavioral Healthcare, Developmental Disabilities, and Hospitals and
present with a variety of CBs. These individuals were sent to ICS because
their CBs did not improve in traditional mental health centers.

Measures
Demographic data (gender, age, IQ, history of behavioral problems, psy-
chiatric diagnoses, placement history, and length of time participating in
treatment) and behavioral data were culled from the records of the residen-
tial provider agencies and ICS clinical records. For most ICS participants the
residential team, the psychologist, the ICS primary therapist, and the client
developed behavioral treatment plans that categorize the clients behaviors
in three ascending intensity categories: Red Flags, Dangerous Situations,
and Lapse behaviors. Red Flags included low-grade behaviors, such as
yelling or swearing, that could precede more serious behaviors. Dangerous
Situations were ones that escalated beyond verbal outburst to include rough
handling of objects, slamming doors, and verbal and/or physical threats of
violence (e.g., moving closer to a potential victim). Lapses were violent
and illegal behaviors, such as aggression and self-injury. The categorization
of the individuals behavior reflects his or her unique patterns of challenging
behavior. For example, if one participant spoke to a child in the community
it might not be a risk for that individual, whereas for an individual with a
history of sexually abusing children it might be categorized as a Dangerous
Situation because he or she approached a potential victim.
 DBT for Individuals With IDD 291

During treatment ongoing CBs were documented in incident reports.

For participants with behavioral treatment plans, the CBs were sorted into
the three intensity categories by the support staff who directly observed the
behaviors. Seven participants lacked behavioral treatment plans, therefore
the CBs documented in the incident reports had to be later categorized by
the ICS team (described earlier) into the three intensity categories. The fol-
lowing coding rules were used: (a) if the participant demonstrated a cluster
of multiple CBs within a short time frame (e.g., often less than 15 min), it
was coded as one incident, at the highest intensity level; (b) incidents that
clearly progressed over a longer time frame (e.g., longer than 30 min) from
Red Flags, to Dangerous Situations, and to Lapse were coded as separate
incidents. In the event of unclear or missing information, individual therapy
notes of these 7 participants were utilized to fill in gaps or clarify these data;
these documents provide detailed behavioral analysis information related to
behavior problems. Interrater reliability of the coding was not evaluated.

MISSING DATA
The average participant had data through the 82nd month of treatment
(M = 6.9 years, SD = 3.5, Mdn = 6.9) and provided 79 months of data.
Five participants (15%) were missing between 16 and 40 months of data at
the start of treatment. Their first data were for 17, 21, 24, 35, and 41 months,
respectively, since the start of their treatment. These missing data were not
recoverable because the agencies only kept records for 7 years. These 5 par-
ticipants provided 115, 136, 52, 94, and 49 months of data, respectively. All
data were retained in all analyses. Three of the 6 did not have Dangerous
Situations data for a portion of treatment. In these cases the behavioral treat-
ment plans collapsed the three categories of data into two target categories
for a period of time and incident reports were not available to recode the
incidents due to destruction of files after 7 years. One of the 6 participants
with missing data did not have Red Flag behaviors coded because the sup-
port team did not target low-risk behaviors and incident reports were not
available to recode the data.

Statistical Methods
Our primary method for analyzing the repeated measures data was random
regression modeling (HLM; also known as hierarchical linear models, mul-
tilevel linear models, and mixed-effects models; Bryk & Raudenbush, 1992;
Longford, 1993). The primary analysis variables were the number of problem
behaviors per month, and the analyses were based on computations of rates
of change in behaviors (i.e., the slopes) from month to month across the
years of study participation. Because all the primary outcome variables had
292 J. F. Brown et al.

highly skewed nonnormal distributions, they were recoded into discrete ordi-
nal levels and analyzed with HLM for ordinal data (Hedeker & Mermelstein,
2000; Scott, Goldberg, & Mayo, 1997). Red Flag behaviors were recoded into
four ordinal levels (the highest level was five or more episodes per month),
Dangerous Situations were recoded into four ordinal levels (the highest level
was four or more episodes), and Lapses were recoded into three ordinal
levels (the highest level was two or more episodes). For each, zero and one
episodes per month were coded as the two lowest levels. A piecewise HLM
was also tested to examine if improvement was faster (i.e., larger slopes)
within the 1st year than subsequent years. For these piecewise analyses the
time variable was partitioned into two time variables, and both were entered
into a single HLM analysis (cf. Keller et al., 2000).
To assess the potential impact of missing data (i.e., ignorable vs. infor-
mative missing data), a pattern-mixture analysis was implemented with
two-tailed tests (Hedeker & Gibbons, 1997). We defined one pattern using
a binary status variable, reflecting whether data were available at the very
start of treatment, which was entered as a predictor in the random regression
models (RRMs). To determine if the slope estimates depend on this missing
data status, a two-way interaction of missing status by time was included in
the HLM models. We also examined whether the total number of months of
data was associated with the slope estimates.

RESULTS
Primary Outcomes
Many problem behaviors occurred while participants were in treatment.
Descriptive data clearly indicate that there were large reductions in problem
behaviors during treatment (see Table 4), and the reductions were statis-
tically significant for Red Flag behaviors (t = 4.2, df = 3018, p < .001),
Dangerous Situations (t = 3.066, df = 2867, p = .003), and Lapses (t = 5.1,
df = 3111, p < .001). Figure 1 shows the observed outcome data during
the first 4 years of treatment suggest that much of the improvement for most
behaviors occurred during the 1st year but that the most serious behaviors,
Lapses, improved more slowly.
A piecewise HLM analysis was done to compare the rate of change
in problem behaviors across the 1st year compared with later years. The
HLM coefficients from this analysis suggest that larger reductions in problem
behaviors occurred in the 1st year of treatment than in subsequent years
and that the reductions were maintained into the later years; however, the
statistical significance of the difference in slopes was not robust. The ordinal
piecewise HLM analysis on Lapses yielded a slope coefficient of 0.049 for the
1st year and 0.015 for subsequent years, indicating the decrease in Lapses in
the 1st year is about 3 times as large as the decrease in Lapses in subsequent
 DBT for Individuals With IDD 293

TABLE 4 Behavior Outcomes During the First 4 Years of Treatment

Year 1 Year 2 Year 3 Year 4

Observed data (N = 35) (N = 40) (N = 40) (N = 40)

Red Flags
M (SD) 55.2 (67.3) 32.5 (36.6) 31.2 (39.1) 26.8 (34.7)
Median 17.5 20.5 15.5 9.5
Dangerous Situations
M (SD) 59.3 (114.1) 29.5 (55.9) 29.0 (56.4) 25.0 (50.4)
Median 13.5 9.5 6.5 6.0
Lapses
M (SD) 20.5 (29.1) 16.5 (28.9) 12.2 (18.2) 11.4 (21.2)
Median 8.5 6.0 6.5 3.0

30

20

10

Dangerous Situations

Lapses

Red Flags
0
1 2 3 4 5 6 7 8 9 10 11 12
4-Month Intervals

FIGURE 1 Mean number of Dangerous Situations, Red Flags, and Lapses within 4-month
intervals across 4 years (N = 26). Note. This graph includes only the 26 participants with
complete data for 4 years.

years (chi-square = 3.9, df = 1, p = .047). However, the difference in slopes

did not remain statistically significant when using robust standard errors (chi-
square = 1.8, df = 1, p = .174).
The coefficient estimates from standard linear HLM were used to illus-
trate the magnitude of the differences in the rate of change. Although the
p values from linear HLM do not reflect the true Type I error rate, the coef-
ficients are much more easily interpreted than the odds ratio coefficients
294 J. F. Brown et al.

generated from ordinal HLM analyses. Linear HLM estimated that much larger
reductions in Lapses occurred in the 1st year than in subsequent years. Linear
HLM estimated 1.7 Lapses during the 1st month and that in the 13th month
of treatment the average participant had 1.0 Lapses per month (a reduc-
tion of 0.7 monthly Lapses, 1.7 1.0 = 0.7, across the 1st year, which is
equivalent to a reduction of 8.4 total Lapses, 0.7 12 months = 8.4, across
the 1st year), whereas HLM estimated 0.8 total Lapses in the 25th month
of treatment and a similar reduction in subsequent years (a reduction of
0.2 monthly Lapses, 1.0 0.8 = 0.2, across the 2nd year, which is equiv-
alent to a reduction of about 2.4 total Lapses, 0.2 12 months = 2.4,
per year for each subsequent year). Thus, at the end of the 4th year
of treatment, the average participant had 0.4 Lapses per month, which
is a 76% reduction in Lapses compared with the 1st month of treatment
(1.7 Lapses per month). These estimates derived from HLM are likely to be
more accurate than the raw descriptive statistics because HLM adjusts for
missing data (e.g., people who leave the program early due to remarkable
improvement).
In the 2 years prior to DBT-SS, 28 of the 40 clients (70%) were in
OSRT, a psychiatric hospital, or in a jail/forensic setting. The exact num-
ber of days was not available for 1 client. The 27 clients with complete
data spent an average of 228 total days per year in these settings. In con-
trast, during the first 2 years of DBT-SS only 2 of the 40 clients were in
any of these settings. One client was in a psychiatric hospital for 20 days
and the other client (noted earlier) was hospitalized, but it was not possible
to get the exact number of days. Of the 27 clients with complete data on
days in OSRT, a psychiatric hospital, or a forensic setting prior to DBT-SS,
the average client spent 228 fewer days per year in these settings during
DBT-SS.

Predictors of Treatment Response

The following eight variables were plausible treatment moderators and there-
fore were tested to see if they predict the amount of improvement in serious
CBs (Lapses). Given that DBT is an evidence-based treatment for overt
problem behaviors associated with BPD, we predicted more improvement
among clients with externalizing disorders (conduct disorder or oppositional
defiant disorder, intermittent explosive disorder [IED] or impulse control
disorder, and aggressive behaviors), suicidal or self-injurious behaviors, or
BPD. We predicted less improvement among clients with sexual offend-
ing behaviors because the treatment literature suggests these behaviors are
very resistant to change. We predicted that amount of improvement would
be comparable for participants of different ages and intellectual functioning
(FSIQ).
 DBT for Individuals With IDD 295

TABLE 5 Predictors of Treatment Response (N = 40)

Normal SE Robust SE

Predictor variable Covariate t (df ) p value t (df ) p value

FSIQ No 1.541 (3109) .123 0.818 (3109) .414

Age Yes 2.473 (2680) .014 1.144 (2680) .253
BPD Yes 4.140 (2680) .001 2.751 (2680) .006
Self-injury Yes 4.717 (2680) .001 1.954 (2680) .050
Aggression Yes 2.292 (2680) .022 2.444 (2680) .015
Conduct disorder No 2.097 (3109) .036 1.114 (3109) .266
IED Yes 5.166 (2680) .001 2.199 (2680) .028
Sex offender Yes 2.723 (2680) .007 1.101 (2680) .271
Note. The covariate variable, the number of Lapses in the first 4 months of treatment, was put into the
equation when necessary to clarify significant correlations. Thirty-five participants were in the covariate
analyses because five participants did not have data for the first treatment year. Normal SE = normal
standard errors used; Robust SE = robust standard errors used; FSIQ = full scale IQ; BPD = borderline
personality disorder; IED = intermittent explosive disorder.

Predictors of better outcomes were the presence of BPD, self-injury, and

aggression, each of which predicted larger reductions in Lapses (see Table 5).
These variables were highly correlated. All 8 BPD participants had aggres-
sive behavior, and 6 had self-injury. When BPD, self-injury, and aggression
and number of Lapses in the first 4 months of treatment were entered
into a single HLM equation, each had unique variance in predicting larger
reductions in Lapses. That is, the presence of BPD independently predicts
larger improvement regardless of whether the participant has self-injury or
aggression.
An additional analysis was conducted to examine if the effect of any
of these variables could be due to participants with these problems sim-
ply having more Lapses at the start of treatment and thus more room for
improvement. However, including number of Lapses in the first 4 months of
treatment as a covariate showed that the strength of the relationship between
these variables and larger reductions in Lapses did not change after control-
ling for initial number of Lapses. Younger age was significantly correlated
with larger reductions in Lapses (t = 2.642, df = 3109, p = .009). However,
the difference in slopes did not remain statistically significant when using
robust standard errors (t = 1.435, df = 3109, p = .151). The HLM coeffi-
cients indicated that participants who were age 20 had twice the reduction
as participants who were age 45. When age was added to the same HLM
equation with BPD, nonsuicidal self-injury, and aggression, the effect for
aggression became statistically nonsignificant implying that aggression pre-
dicted larger reductions in Lapse behaviors because aggressive participants
were younger, not because aggression per se makes someone a good match
for DBT.
296 J. F. Brown et al.

The only reliable predictor of a slower progress was the presence of

IED. Participants with IED had smaller reductions in Lapses than participants
without the disorder. Including number of Lapses in the first 4 months of
treatment as a covariate showed that the strength of the relationship between
the presence of IED and smaller reductions in Lapses did not change after
controlling for initial number of Lapses. The presence of a history of sex-
ual offending was also associated with slower progress in treatment, but
the effect did not remain statistically significant when using robust standard
errors so it could simply be a spurious association. None of the 8 BPD par-
ticipants had IED and only 1 had a history of sexual offending. Finally, we
tested if reduction in Lapses generalized across levels of intellectual impair-
ment severity. Participants with lower FSIQ scores had the largest reduction
in Lapses, but the association was not statistically significant.

Analysis of the Impact of Missing Data Patterns

We examined the effects of differential missing data on each of our major
outcome variables and found no evidence that the findings were biased
by these differences. The 5 participants (15%) who were missing the first
1640 months of data (16, 20, 23, 34, 40 months) were all retained in all
analyses because the 5 participants were largely similar to the other 34 par-
ticipants: FSIQ (M = 63.7 vs. 60.2, p = .507, respectively); age (35.7 vs. 30.0,
p = .140). However, a much higher percentage of the 5 participants had a
history of sexual offending (100% vs. 53%; p = .064). Although inclusion of
the 5 participants in the analyses did reduce the effect size of the reduction
in problem behaviors, it did not eliminate the statistical significance of any
finding.

DISCUSSION

We hypothesized that dialectical behavior individual therapy and the Skills

System (DBT-SS) would help individuals with intellectual disabilities reduce
severe CBs by teaching them self-control. As expected, there were large sta-
tistically and clinically significant reductions in all three behavior categories
in the 1st year and the improvement was maintained over 4 years. Most of
the improvement in the less severe behaviors occurred in the 1st year, but
the more severe behaviors improved more gradually across the first 4 years.
Statistical analyses estimated the there was a 76% reduction in serious behav-
iors (e.g., fewer violent, self-injurious, and illegal behaviors) across 4 years
of DBT-SS.
Our results suggest that DBT-SS may be more helpful for younger
participants and participants with BPD, self-injury, or aggression, as the pres-
ence of these characteristics was associated with larger reductions in severe
 DBT for Individuals With IDD 297

challenging behaviors. Given that DBT is an evidence-based treatment for

BPD, one would expect that these clients would improve more rapidly in
treatment. Individuals without IED improved more quickly than individu-
als with IED. Younger participants with BPD, self-injury, or aggression and
who do not have IED may be a particularly good match for DBT-SS, but
further research is needed to confirm for whom DBT-SS will likely yield
better improvement than other treatments. Understanding predictors of poor
outcome can also facilitate efforts to develop more effective interventions
to address the specific needs of certain subgroups of clients. The analy-
sis of predictors of improvement suggests that improvement in CBs was
comparable for individuals of varying levels of intellectual disability (FSIQ),
which suggests that DBT may be as helpful for individuals with intellec-
tual disabilities (ID) as for individuals with developmental disabilities (DD)
without ID.
Because no comparison group was used in this study, we cannot
conclude confidently that DBT-SS is responsible for these improvements.
These data also do not verify that participants improved in emotion reg-
ulation or self-control skills or that these changes were responsible for
improvements in challenging behaviors. The significant reductions in CBs
combined with the heavy focus on skills training in DBT-SS leads us to
believe that DBT-SS improved the coping abilities of participants and thereby
improved their autonomy, positive life experiences, and relationships, but
more research is needed to verify the process and outcomes for DBT-SS.
However, it is unknown which of the many DBT-SS components were the
most helpful. In addition, the treatment fidelity was not verified. Further
research is also needed to clarify how much DBT-SS is needed to achieve
the magnitude of treatment effect observed in this study. It is currently
not clear how much of the continuing improvement in challenging behav-
iors in the later years was due to what participants learned in DBT-SS
during the 1st year of treatment or if ongoing intensive DBT-SS was nec-
essary for multiple years. The generalizability of these treatment effects
beyond this clinical setting and specific sample is also unknown. This pilot
study warrants further studies with rigorous methodologies to remedy these
limitations.
Individuals with IDD and CBs have complex needs that likely require
intensive and comprehensive treatment over an extended period of time.
Although such treatments are expensive, they will likely benefit these con-
sumers, support agencies, and the general public. The usual management of
these high-risk individuals often involves multiple systems of care, multiple
treatment modalities, high staff-to-client ratios, psychiatric hospitalizations,
and incarcerations and also involves considerable expense. DBT-SS could
result in cost savings through reductions in the utilization of these types
of services. Clients in DBT-SS showed dramatic reductions in incarceration,
psychiatric hospitalization, and OSRT. Among the clients who were in these
298 J. F. Brown et al.

settings before DBT-SS (n = 27), the time spent in these settings decreased
from 228 days per year to almost zero on average. Total psychiatric mul-
tidisciplinary treatment costs for the average client living in a community
residence receiving DBT-SS services is estimated at $482 per day. The most
expensive residential rate of for a participant in the study was $526 per
day. Of these totals, the average cost of DBT-SS therapy services at ICS was
$180.81 per week. This weekly rate included 1 hr of DBT individual ther-
apy, 1 hr of skills group, an additional hour of sexual offender group for
individual with those issues, unlimited staff participation in ICS training, ICS
staff attendance at monthly team meetings, supplied Skills System Handout
Notebooks and Skills System CDs for the clients and direct support profes-
sionals, skills coaching via phone with the client, and phone consultation
with the team as needed.
We estimated cost savings for the clients in this study by comparing
our costs to the cost of psychiatric hospitalization according to the Hospital
Association of Rhode Island (2007; published on the Internet by Rhode Island
PricePoint System www.ripricepoint.org). In 2006, the average cost for a
psychiatric hospitalization in Rhode Island was $2,637 per day for a person
who has an ID/DD (the least expensive hospital costs about $2,105 per
day). Thus, we estimate that the average DBT-SS client costs $667,270 per
year (228 days $2,637 + 137days $482) before starting DBT-SS and costs
$175,930 per year during DBT-SS at ICS (365 days $482 = $175,930)a
savings of $491,340 per client per year.
There are clear benefits to enabling clients to move from locked
settings to community residences. This adapted DBT model utilizing the
Skills System is designed to improve the individuals core emotional, cog-
nitive, and behavioral regulation capacities that are foundational to gaining
increased levels of independence. Effectively addressing these lifelong severe
problem behaviors appears to require long-term, comprehensive clinical
support.

CONCLUSION

Although these pilot study data do not provide conclusive evidence for the
effectiveness of DBT-SS with this population, these preliminary findings merit
further studies with more rigorous methodologies. The DBT-SS model is
designed to treat emotional dysregulation within a framework that accom-
modates the complex needs of individuals with cognitive impairment who
demonstrate chronic patterns of CBs. This long-term, comprehensive treat-
ment may enhance core self-regulation skills that are required for increasing
independence and mobilizing effective self-determination.
 DBT for Individuals With IDD 299

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