Transcript Interactions with people with profound intellectual

Interactions with people with
profound intellectual
disability.
Sheridan Forster
[email protected]
Teresa Iacono
Centre for Developmental Disability Health Victoria,
Monash University
What is “profound intellectual disability”?
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ICD-10 – Profound mental retardation
“The IQ in this category is estimated to be under 20,
which means in practice that affected individuals
are severely limited in their ability to understand or
comply with requests or instructions. Most such
individuals are immobile or severely restricted in
mobility, incontinent, and capable at most of only
very rudimentary forms of nonverbal
communication. They possess little or no ability to
care for their own basic needs, and require
constant help and supervision”.
ICD-10 Guide for Mental Retardation.
What is “profound intellectual disability”?
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IASSID – Persons with profound multiple
disabilities
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Heterogeneous group
No existing standardized tests are applicable
Profound intellectual disability
Physical disability
Frequent sensory impairments
Personal assistance for everyday tasks
People with profound intellectual disability
in research
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Terminology
Methods of diagnosis
Methods of describing studied group
Limited number of studies
Types of research
Predominantly on children
Topics in current literature
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Indications of preference and choice
Contingent responding
Multisensory rooms
Objects of reference
Behaviour states
Interaction
Qualitative studies
Indication of preference and choice
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Many people with profound intellectual disabilities
can express preferences.
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Preference is often displayed through changes in
affect and some gestural means.
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Some individuals can not clearly demonstrate their
preferences.
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In practice, meaning should be a negotiated
outcome of interactions, always involving inference.
Expression of happiness
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Methods of systematically measuring expressions of
happiness have been developed
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In studies reasons for assessing happiness have
been linked with understanding satisfaction with life.
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Expression of happiness has also been used as an
dependent variable for interventions
Contingent awareness
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Contingency awareness occurs when the person
attempts to create event with the awareness that
their behavior causes the event. It is evidenced
when the person shows a different reaction when an
expected co-occurrence does not appear.
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Children with from a “mental age” of 2 months have
demonstrated contingency awareness.
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Some children for who show limited gains in
contingency awareness. These children are often in
drowsy or asleep states throughout the day.
Multisensory rooms
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Frequently used intervention to facilitate
relaxation or activity
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Limited research
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For some people multisensory rooms appear to
affect relaxation or activity
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Facilitation by staff
Objects of reference
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Studies on children with varying disabilities
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Some children have successfully learnt to use
objects of reference
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Successful use of objects of reference has not been
demonstrated with people with the most profound
intellectual disability
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Concern raised regarding the grasp of theory in
practitioners
Behaviour states
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Investigations into the behaviour states of
students with profound multiple disabilities
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Some people are rarely in positions for learning,
given limited time periods spent in alert states.
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Some conditions may enhance alertness, such
as activities and interaction.
Interaction
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Large number of studies looking at interaction of
children with dual sensory impairments, students
with severe intellectual disability in the classroom
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Often highlight the low level of interactions that
occur.
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Small number of studies looking at communication
between disability support staff and people with
profound intellectual disability
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Staff training is often employed to improve levels of
interaction
Parent-infant interactions
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Developmental models are frequently used to
shape interventions (including for adults)
Intensive Interaction
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Uses mother-infant interaction as a model
Pleasurable interactions incorporating play
routines
Showing positive results in enhancing interactions
with people with profound intellectual disability
Qualitative methodology
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Have attempted to explore interactions with
people in greater depth
Small number of qualitative studies
Goode (1994)
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Participant-observation research
Children with deafblindness
Creation of meaning
Relationship between the individual and those
around them
What does research say?
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Heterogeneity
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Some people who respond to interventions such
as using multisensory rooms, choice
interventions and objects reference to aid
understanding
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Difficulties in ascertaining the meaning of
communication
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Fluctuations in alertness
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Interventions are often focused on staff
What gaps exist?
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An understanding of the communication of
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Adults
In their daily environments
With their most common interaction partners
The subjective experience of staff interacting
with people with profound intellectual
disabilities.
Interactions with people profound
intellectual disability… looking ahead
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What is the nature of interactions between
disability support workers and people with
profound intellectual disabilities?
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What do disability support workers say about
interacting with people with profound intellectual
disabilities?