Interactions with people with profound intellectual disability.

1. Interactions with people with profound intellectual disability. Sheridan Forster Sheridan.Forster@med.monash.edu.au Teresa Iacono Centre for Developmental Disability Health Victoria, Monash University

2. What is “profound intellectual disability”? • 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.

3. What is “profound intellectual disability”? • IASSID – Persons with profound multiple disabilities • Heterogeneous group • No existing standardized tests are applicable • Profound intellectual disability • Physical disability • Frequent sensory impairments • Personal assistance for everyday tasks

4. People with profound intellectual disability in research • Terminology • Methods of diagnosis • Methods of describing studied group • Limited number of studies • Types of research • Predominantly on children

5. Topics in current literature • Indications of preference and choice • Contingent responding • Multisensory rooms • Objects of reference • Behaviour states • Interaction • Qualitative studies

6. Indication of preference and choice • Many people with profound intellectual disabilities can express preferences. • Preference is often displayed through changes in affect and some gestural means. • Some individuals can not clearly demonstrate their preferences. • In practice, meaning should be a negotiated outcome of interactions, always involving inference.

7. Expression of happiness • Methods of systematically measuring expressions of happiness have been developed • In studies reasons for assessing happiness have been linked with understanding satisfaction with life. • Expression of happiness has also been used as an dependent variable for interventions

8. Contingent awareness • 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. • Children with from a “mental age” of 2 months have demonstrated contingency awareness. • Some children for who show limited gains in contingency awareness. These children are often in drowsy or asleep states throughout the day.

9. Multisensory rooms • Frequently used intervention to facilitate relaxation or activity • Limited research • For some people multisensory rooms appear to affect relaxation or activity • Facilitation by staff

10. Objects of reference • Studies on children with varying disabilities • Some children have successfully learnt to use objects of reference • Successful use of objects of reference has not been demonstrated with people with the most profound intellectual disability • Concern raised regarding the grasp of theory in practitioners

11. Behaviour states • Investigations into the behaviour states of students with profound multiple disabilities • Some people are rarely in positions for learning, given limited time periods spent in alert states. • Some conditions may enhance alertness, such as activities and interaction.

12. Interaction • Large number of studies looking at interaction of children with dual sensory impairments, students with severe intellectual disability in the classroom • Often highlight the low level of interactions that occur. • Small number of studies looking at communication between disability support staff and people with profound intellectual disability • Staff training is often employed to improve levels of interaction

13. Parent-infant interactions • Developmental models are frequently used to shape interventions (including for adults) • Intensive Interaction • Uses mother-infant interaction as a model • Pleasurable interactions incorporating play routines • Showing positive results in enhancing interactions with people with profound intellectual disability

14. Qualitative methodology • Have attempted to explore interactions with people in greater depth • Small number of qualitative studies • Goode (1994) • Participant-observation research • Children with deafblindness • Creation of meaning • Relationship between the individual and those around them

15. What does research say? • Heterogeneity • Some people who respond to interventions such as using multisensory rooms, choice interventions and objects reference to aid understanding • Difficulties in ascertaining the meaning of communication • Fluctuations in alertness • Interventions are often focused on staff

16. What gaps exist? • An understanding of the communication of • Adults • In their daily environments • With their most common interaction partners • The subjective experience of staff interacting with people with profound intellectual disabilities.

17. Interactions with people profound intellectual disability… looking ahead • What is the nature of interactions between disability support workers and people with profound intellectual disabilities? • What do disability support workers say about interacting with people with profound intellectual disabilities?