Outcomes
in the Ontario IBI Program
Adrienne
Perry, Anne Cummings, Jennifer Dunn Geier, Susan Hughes, Nancy
Freeman, Louise LaRose, Tom Managhan, Jo-Ann Reitzel, Janis
Williams.
This
is a summary of a symposium presented at the ONTABA Conference
November 10, 2006, based on a report commissioned by the Ministry
of Children and Youth Services (MCYS) submitted by Adrienne
Perry, PhD., C.Psych., BCBA. However, the views expressed here
are those of the authors and not necessarily those of MCYS.
Intensive
Behavioural Intervention (IBI) is a specialized form of intervention
designed for young children with autism, based on the principles
of Applied Behaviour Analysis (ABA). IBI is considered “best
practice” for young children with autism, based on literature
which has demonstrated its efficacy relative to less intensive
intervention, eclectic intervention, and equivalent amounts
of special education. IBI has been publicly funded in Ontario
since 2000 through MCYS, via contracts with service providers
in each region. Service may be delivered via the public program
or by private providers and may take place in a variety of settings
(homes, centres, child cares, etc.).
The
purpose of this study was to examine children's outcomes in
the Ontario IBI Program. It was a study of the "effectiveness"
of IBI under "real-world" conditions, as opposed to
an "efficacy" study like those from small, model programs
in the literature. It was a retrospective file review study,
designed to address two main questions: 1. Do children show
significant improvement during their participation in the IBI
program? (how much improvement, improvement in what respects?
e.g., autism symptoms, developmental skills, etc.) and 2. What
factors predict greater improvement? (level of functioning,
program variables, etc.).
The
data used in the study came from 332 files of children (80%
boys) in the Ontario IBI program, which is a very large sample
size, although it is only a subset of children receiving service
in the Ontario program. Available data from intake and exit
assessments (diagnostic and developmental measures) were used
together with program variables such as age and duration. Measures
included the Childhood Autism Rating Scale (CARS), which is
a standard observational measure often used in psychological/diagnostic
assessments, measuring severity of autism symptoms; the Vineland
Scales of Adaptive Behavior, which is a parent interview measure
regarding everyday skills in several domains of development
(communication, self-help, social, and motor skills); and a
cognitive or intellectual test administered to the child (various
tests depending on the child’s age and ability level).
Children
were between 20 and 86 months old at intake,with 32% under 4
years of age, 34% between 4 and 5 years, 28% between 5 and 6
years, and 6% over 6 years at program entry. The average age
was about 4½ years. The duration of IBI received ranged
from 4 months to 4 years with an average of 18 months. The children
had substantial developmental delays as well as autism. Although
there was considerable variability among children, they were
functioning, on average, at a 2-year cognitive level and in
the moderate to severe range of intellectual disability at intake.
Similarly, adaptive levels were in the moderately delayed range
with age equivalents below a 2-year level, on average. However,
there was a range of ability levels and so children were divided
into 3 subgroups based on their initial level of functioning
("higher", medium, and lower) based on Vineland standard
scores. (Note that "higher" is a relative term and
does not mean high functioning as in average intelligence.)
Results for Question 1. Do Children Improve?
Autism Symptom Severity. Children showed statistically significant
and clinically significant reduction in autism symptom severity
(CARS Total score). That is, children had less repetitive behaviour,
related better to people, had better verbal and nonverbal comunication
skills, and improved imitation abilities, etc. at the time of
exit compared to their initial scores. About half the children
changed enough to fall into a milder category on this instrument.
Of those who were in the mild/moderate autism range at intake,
41% improved so that they were in the non-autism range at exit.
Of those in the severe autism range at intake, 59% improved
to the mild/moderate range and 15% improved very substantially
to the non-autism range. Note, however, that these children
could still have shown developmental delays.
Cognitive
and Adaptive Behaviour Level. Cognitive level (IQ and Mental
Age) based on various cognitive tests, improved significantly
for children, in some cases dramatically so (but this was unavailable
for many children). Further, children gained significantly in
developmental skills (increased age equivalents) in all areas
of adaptive behaviour (communication skills, self-help skills,
social skills, and motor skills) as measured by the Vineland
parent interview measure. Standard scores, which are corrected
for age, also increased significantly for Communication and
Socialization, two key areas of difficulty for children with
autism.
Rate
of Development. As noted above, children were quite variable
but, on average, were substantially delayed developmentally
prior to the program. In fact, they had been developing at about
one-third of the rate of a typically developing child. Children's
rate of development (based on the Vineland age equivalent scores)
during IBI was approximately double their rate prior to IBI,
and this was true for all three initial subgroups, i.e., even
the lower functioning children doubled their rate of development,
as a group. This suggests that the developmental trajectory
of children was altered during their participation in the IBI
program. Many children were even developing at a typical rate
(although they may not have "caught up" to typical
peers).
Range
of Progress/Outcome. There was considerable heterogeneity in
outcome, as would be expected given the population. Children
were classified into seven categories of progress/outcome based
on a combination of all the information available (rate of development,
Vineland scores, cognitive scores, and CARS scores). The categories
were: Average Functioning, Substantially Improved, Clinically
Significantly Improved, Less Autistic, Minimally Improved, No
Change, and Worse. The majority of children (75%) showed some
measurable benefit or improvement during IBI (i.e., the first
5 categories combined). This included some children who achieved
average functioning (average cognitive and/or adaptive levels
and non-autism range on CARS), similar to those described as
"best outcome" in the efficacy literature). The other
25% did not seem to show improvement (the last two categories
combined) at least on the available measures. However, anecdotal
evidence suggests that some of these children may have improved
in problem behaviour, which would not be captured by these measures.
Results for Question 2. Predictors of Progress/Outcome
Initial
Level of Functioning. Children's progress/outcome was clearly
related to their initial functioning levels, on average, though
not totally. As a group, children who were in the relatively
"higher" functioning subgroup initially showed better
outcomes, but not in every case. Children who were initially
medium functioning were, at exit, to be found in every one of
the seven progress/outcome categories, including average functioning.
Children who were initially lower functioning also showed a
range of progress, though none achieved average functioning.
Program
Variables: Age and Duration. Children who started IBI before
age 4 did better than those who started after age 4 on all scores
on the exit assessment. Children who received 2 years or longer
duration of IBI did better than those who received a shorter
duration (however, these children were also younger when they
entered). Statistical analyses attempting to prioritize the
degree of influence of initial level of functioning, age, and
duration, showed that initial levels are the strongest determinant,
but that they do not account for all the variability (half at
most). Age at entry appears to be more predictive than duration
of IBI. However, there are clearly other factors (e.g., quality
and quantity of intervention, other child factors not measured
here) which may account for the unexplained variance.
Strengths
and Limitations
There
are both strengths and limitations of this study (as with any
study). The primary limitation is that the study has no Comparison
group, which means gains cannot be conclusively attributed to
the IBI program, per se, although the examination of subgroups
within the sample partially compensates for this. Also there
is no measure of treatment quantity, quality, or fidelity. The
principal strength is that the study is the largest (and one
of the only) studies which demonstrates the effectiveness of
IBI in a large and diverse community sample.
