With the right ( active ) support

1. PLEASE NOTE – This is an old presentation. Check out our latest work at www.i-can.org.au With the right (active) support

2. ICF and the Supports paradigm I-CAN v3 Research Active Support I-CAN v4 Overview

3. Paradigm Shift in Conceptualization of Disability • Historical approaches • False dichotomy • medical versus social models • Emergence of bio-psycho-social model • Development of concept of supports • Person-environment interaction

4. Conceptual Frameworks • International Classification of Function, Disability and Health (ICF) (WHO, 2001) • Health & Well Being • Activities & Participation • Environment & Personal factors • American Association on Intellectual & Developmental Disability (AAIDD, 1992, 2002) • Conceptualization of supports

5. Functioning, Disability and Health Functioning encompasses all human functions; at the level of the body, the individual and societyDisability is perceived as a multi-dimensional phenomenon resulting from the interaction between people and their physical and social environment Health is defined as ‘a state of complete physical, mental and social well-being and not merely the absence of disease.’ (WHO, 2001)

6. Body function & structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors Interaction of Concepts Health Condition (disorder/disease)

7. Support Needs • Australian service agencies are increasingly using the concept of ‘support needs’ in an attempt to effectively and efficiently allocate scarce resources to the rapidly increasing proportion of the population with a disability. • (AIHW, 1997)

8. “Supports are the resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning.” (AAIDD, 2002, p. 151) Supports enable individuals to live meaningful and productive lives that they choose.

9. Support Intensities • Time duration • Frequency • Resources • Intrusiveness

10. Research Project • Development & trial of instrument & process • Data collected in NSW, ACT, Vic & Qld • Residential settings and some day program settings • Process engaging 5071 participants • Trained facilitators • 1012 complete data sets

11. Sample • Ages 17 years to 77 years, average age 41 years, SD =10 years • Male 58% and female 42% • The majority (84%) were persons whose primary disability was intellectual disability. • Most of the sample (72%) had more than one recorded disability, and some had as many as four disabilities. • 65% had 2 or more disabilities

12. Disability Groupings

13. Health & Well Being Scales • Physical Health • Mental Emotional Health • Behaviour • Health Services • Health and Well Being Total

14. Physical Health Support Bands

15. Definitions Activities and Participation Activity is the execution of a task or action by an individual. Participation is involvement in a life situation. Activity limitations are difficulties an individual may have in executing activities. Participation restrictions are problems an individual may experience in involvement in life situations.

16. Activities & Participation Scales • Applying Knowledge, General Tasks & Demands (KAT) • Communication • Self Care & Domestic Life (SCDL) • Mobility • Interpersonal Interaction & Relationships (IIR) • Life Long Learning (new in v4) • Community, Social & Civic Life (CSCL)

17. Support Bands Activity & Participation (N=1012)

18. Reliability Studies • Internal consistency alpha 0.70 to 0.98 • Inter-rater reliability r = 0.96 to 1.00 Overall agreements r = 0.99 • Test-retest reliability r = 0.21 to 0.94 • 1 year r = 0.21 Physical Health Scale r = 0.93 for Mobility Scale • 2 years r =-0.22 Mental Emotional Health r = 0.94 Mobility Scale

19. Participant Evaluations • Positive feedback from: • People with disabilities • Trained facilitators • Family members and advocates

20. Validity Studies • Moderate and significant correlations between the I-CAN domain scores and the Inventory for Client and Agency Planning (ICAP) Service level score coefficients (-.39 Communication to -.62 Behaviour) • Generally low to moderate correlations between I-CAN & Quality of Life Questionnaire (QOL-Q) (Schalock & Keith, 1993), but significant correlation between Community Integration/Social Belonging and I-CAN scales of Mental Emotional Health, Communication and Interpersonal Interactions and Relationships.

21. Support Hours • Multiple regression analyses against • Day time support hours • Night support hours • 24 hour support clock • Support functions (AAIDD) • Allocation of support hours includes up to 40% factors relating to the individual but up to 60% appears to relate to organizational factors such as policies, staffing, resources

22. Research Findings Underpinning Active Support Direct observation in group homes shows that many people with severe intellectual disability spend lots of time doing little or nothing. These people need support to initiate and participate in activities. Staff can be trained to provide the support needed and so substantially increase residents’ participation.

23. The Hotel Model Staff Residents Residents are spectators in their own lives. Staff feel like glorified domestics.

24. ProblemThere are many things which people with severe learning disabilities cannot entirely do for themselves Solution Everyone has some ability and can be involved in every activity if given enough direct assistance and if the task is broken down into sufficiently small steps. Providing support bridges the gap between what people can & cannot do.

25. The Active Support Model People participate in everyday activities with support

26. The Active Support Model • Examines what staff do, how they are deployed and supported, and the day-to-day organisation of the group home • Staff are taught to provide a higher proportion of assistance and praise for participation and so increase resident involvement in constructive activities. • Activities and support are planned carefully and staff take on specific roles and responsibilities.

27. Doing with, not doing for • Staff members’ main job should be to work directly with residents. Active Support helps us refocus on this. • Need to avoid the ”hotel model” where staff do things for residents and residents become non-participating spectators in their own lives.

28. Maximising Choice and Control Whose life is it anyway? Offer options Respect preferences Broaden experience by encouraging participation ‘little and often’ Not just support for domestic tasks, but often a good place to start

29. Active Support Procedures • Detailed staff training in procedures, including 1:1 on-site training in supporting a resident to participate in activity. • Straightforward paper planning tools to produce: • Daily Activity and Support Plan • Opportunity plans (for practising new skills) • Protocols

30. Time HELEN SW PAUL SW DIANE SW Household Options 8:00 Eat breakfast A Eat breakfast C Eat breakfast C Put rubbish out Set table 8:30 Clear dishes (on own) A Load dishwasher A Start laundry C Clear dishes Wash up/load dishwasher 9:00 Shopping C Clean bedroom A Shopping & PO – pay phone bill C Start laundry Unload dishwasher Go for a walk 10:00 Unpack groceries C Start laundry Have coffee with mother A Mrs F Finish laundry A Hang out clothes Water plants Gardening Activity and Support PlanStaff: Anne (A) and Colin (C)

31. Ways of providing support to increase participation ASK-INSTRUCT-PROMPT-SHOW-GUIDE > > > > > > > > > > > > > > > > > > > level of help increases Use FLEXIBLY - In practice the different levels can be used together and you switch back and forth between them depending on the person’s needs.

32. Active Support Providing enough help to enable people to participate successfully in meaningful activities and relationships …so that people gain more control, become more included, and gain independence …irrespective of degree of disability or presence of extra problems

33. Designed to provide a bridge to participation in everyday activities for people who lack the skills to participate independently. Active Support

34. A virtuous circle of positive interaction & empowerment Staff interact positively with service users and provide opportunities for them to participate Staff think of new ideas for more goals and activities. Staff see themselves as enablers Service users participate successfully in some activities Staff perceive service users as more competent, & valued. Staff give service users more respect, control & attention. Staff feel more confident, successful & eager to try new things

35. The right support empowers people

36. A model illustrating a system that aligns different levels of support around the person with a disability (Gillinson, Green & Miller, 2005)

37. How do you know what support needs to be provided?

38. www.i-can.org.au

39. I-CAN v4 • Web-based • Redesigned to more user friendly and holistic with better specificity • Recording during interview to generate a comprehensive supports profile • Much greater practical utility in support planning and many new functions: • Concurrent collection of MDS data • Online tracking, group reporting and specific support costs analysis possibilities • Many more research opportunities

40. The right (active) support empowers people I CAN DO IT! www.i-can.org.au