Presentation of interim resaerch findings at NDS conference in May 2014. Points to the significance of practice leadership to staff practices in group homes.

1. latrobe.edu.au CRICOS Provider 00115M
Quality of life for people with
intellectual disability who live in small
group homes: What makes a difference
Professor Christine Bigby
Dr Emma Bould
Professor Julie Beadle Brown
Living with Disability Research Group
c.bigby@latrobe.edu.au

2. Outcomes for People with Intellectual Disabilities in
Supported Accommodation
 Half disability expenditure is on accommodation services
– most on group homes for people with intellectual
disability
 Policy framed as achieving - Quality of life (Schalock et al., 2002)
 emotional well-being
 interpersonal relations
 material well-being
 personal development
 physical well-being
 self-determination
 social inclusion
 rights
 Engagement in meaningful activities and relationships as
a measure of quality of life and a route to quality of life

3. What Predicts Engagement
Initial regression
Active support
Resident adaptive behaviour
Behaviour problems
Potentially/severe problem behaviour
Staff number
Staff length of service
Seniority of staff
Age of project
Staff turnover
Management development
Active support training of senior staff
Final regression
Active support
Resident adaptive
behaviour
From Mansell et al 2003

4. Evidence Base Active Support
 If staff use active support consistently people with
intellectual disability show increases in engagement,
growth in skills, more choice and control and less
challenging behavior (see Mansell and Beadle-Brown 2012 for a review)
 Recent also findings suggest
 active support proxy for other person-centred approaches – (PCP,
Spell, PSB, Total Communication) people received consistently
 people who receive consistent good active support have better
outcomes in other QoL domains – personal development,
interpersonal relations, social inclusion, self-determination and
rights
 does not require more staff nor cost significantly more – available
resources are used much more efficiently in services where the
support was skilled (Beadle-Brown et al, in press)

5. Did Skilled Support Cost More?
Over 3 months Skilled support
(n=18 of 50)
Less skilled
support (n=32 of
50)
Accommodation and support
cost adjusted for reported per
person staff hours
Mean
Range
£21,640
£7,430 – £67,020
£16,580
£7,430 – £29,950
Total care package cost per
person, including external
services
Mean
Range
£22,420
£7,430 – £67,640
£17,060
£7,430 – £30,990
These differences are not significant
From Beadle-Brown et al in press

6. Person-centred Active Support
 Providing enough help to enable people to participate
successfully in meaningful activities and relationships (an
enabling relationship),
 so that people gain more control over their lives, gain
more independence and become more included as a
valued member of their community,
 irrespective of degree of intellectual disability or presence
of extra problems (Mansell and Beadle-Brown, 2012)
 One of a family of person centred approaches
 But research evidence for the impact of the other
approaches on quality of life is currently very weak

7. Person-centred Approaches
Person-centred planning
Person-centred action
 Active support
 Total communication/AAC
 Positive behaviour support
 SPELL (autism friendly
approaches)
Informs about individual strengths,
possible directions and aspirations,
grounded in reality
Informs about longer-term
direction, the bigger picture
Person-centred– putting
the individual at the
centre of their lives and
of staff activity.
Much more robust
evidence re Active
Support than other
approaches

8. Implementing Active Support - Australia
 For over 10 years – organisations in Australia have been adopting
active support - led by Victoria in 2003/04
 Active support figures as method of staff practice in Qld and Vic state
policy
 But has proved difficult to embed in organisations
 Largest study to date in Australia 6 organisations - 1-8 years (Mansell, Beadle
Brown, Bigby, 2013)
 Less than 1/3 people were receiving consistently good support
 Only consistently high levels of active support in one organisation
 Substantial variation within and between homes
Research Question
 What organisational factors are associated with high levels of active
support and improvements over time?

9. Embedding Active Support in Accommodation
Services
 Linkage study 8 industry partners plus 1
 Implementing Active Support for varying periods
̶ Golden City Support Services (2003,10 yrs)
̶ Jewish Care (2004, 9 yrs )
̶ DHS Eastern Region (2004, 9 yrs)
̶ Yooralla (2005, 8 yrs)
̶ Sunshine (2006, 7 yrs)
̶ annecto (2009, 4 yrs)
̶ Endeavour (3 years)
̶ Karingal (18 months)
̶ Greystanes (2012, 1 yr)

10. Method
 Measures of resident outcomes and staff practices
 Structured observations for 2 hours, 4 - 6pm
 Resident engagement
 Challenging behaviour
 Frequency of contact and assistance from staff
 Active Support Measure (Quality of support)
 Observed Measure of Practice Leadership - interview and observe
 Resident needs and characteristics completed by keyworker
 Staff surveys - training, qualifications, satisfaction, knowledge and
attitudes
 Annual data collection for 5 years
 longitudinal same houses alternate
 representative sample from audit
 Annual reports – feedback and development

11. Settings and Participants Year 1 2012/2013
 58 group homes (9 organisations), average 4 people (1 – 9)
 171 residents observed
 36 - 76 yrs, mean age 42
 Relatively able group - wide range - org 7 exceptional
 Each organisation supporting at least one person with more
severe disabilities
 153 staff surveys (52% of the 295 sent).
 46 front line leaders interviewed and 38 returned the practice
leader survey (82%).
 20 Managers of practice leaders survey (77% the 26 sent)

12. Year 1 summary results and what it is possible to achieve
LaTrobe Study Year 1
Skilled support study
Good active support
Whole
sample > 151 <151 >151 < 151
Those with
PIMD
ABS average 139 198 88 197 78 56
Engagement 47 68 31 67 53 49
• Social activity 15 49 24 20 21 23
• Non social activity 35 68 31 55 39 33
Active Support 49 64 38 84 80 78
Staff Assistance % 3 4 2 15 10 5
Staff Contact % 17 17 17 16 37 51
Staff Assistance + Contact
%
20 21 19
31 47 56
Time spent receiving
assistance + contact Mins
12 13 11 19 28 34
 Poorer outcomes for people with more severe impairment except contact
 Relatively poor compared to what has been shown to be possible
 Good active support = score greater than 66%
 Assistance over 10% is possible and necessary
It is possible to achieve engagement levels of:
 50 - 60% people with more severe disabilities (ABS < 151)
 60 – 80% people with milder intellectual disabilities (ABS>151)

13. 13
Variability in Resident Outcomes and Staff Practices
Sample average and people with higher support needs
Whole Sample
(<151)
Org x Org y
UK study
Good active
support
(Ashman, Beadle-
brown, 2006)
Engagement in
meaningful activity
and relationships
47% (31) 64% (54) 25% (16) 60% (54)
Percentage of time
spent in Social
Activity
15% (24) 23% (19) 9% (5)
Percentage of time
spent in Non-social
Activity
35% (31) 45% (38) 16% (11)
Active support 49 (38) 67 (64) 28 (12) 79 (79)
Time spent receiving
assistance and
contact from staff
12 mins (11) 18 mins (15.5) 7.5 mins (6) 23 (25)

14. Type of Engagement
 Average 53% of the time disengaged - 32 mins per hour
 Disengagement highest for organisations with more severely
disabled residents
 Variation in type of activities observed:
 Self-care, audio-visual and leisure - people more severe
disabilities
 Social, household, leisure activities - people with milder
disabilities
 Few people use gas or electrical equipment – on average 3-4% in
O3, O8 and O9, 1% in O4 and O5 (i.e. least severely disabled population).

15. Relationship between Ability, Active Support,
Engagement, & Assistance
 Higher engagement related to higher active support & more assistance
 More able people get more assistance, better active support and are
engaged more.
 With full implementation of active support should see:
 lower, non-significant relationship between active support and level of
ability
 weaker relationship between level of ability and engagement.
 a slight negative relationship between Assistance and level of ability –
those who are more severely disabled should be getting the most help.
Engagement Active Support Assistance
Level of ability .689**
.624**
.199**
Engagement .614**
.247**
Active Support .423**

16. 0
20
40
60
80
100
Org1
<151
Org 1
151 +
Org2
<151
Org 2
151 +
Org3
<151
Org3
151 +
Org4
<151
Org4
151 +
Org5
<151
Org5
151 +
Org6
<151
Org6
151 +
Org7
<151
Org7
151 +
Org8
<151
Org8
151 +
Org9
<151
Org9
151 +
Whole
<151
Whole
151 +
Percentagetimespentengaged
Engagement: People with More Severe
Disabilities vs. People with Less Severe
Disabilities
>151 Good
Level
Engagement:
Mean = 75
(45 min per
hour)
minutes per hour
<151 = 18.35
151+ = 40.85
<151 Good
Level
Engagement:
Mean = 54
(32.4 min per
hour)
• Mean engagement much less for people with more severe ID much
• Most fall below what is possible to achieve
Sig difference

17. 0
20
40
60
80
100
Org1
<151
Org 1
151 +
Org2
<151
Org 2
151 +
Org3
<151
Org3
151 +
Org4
<151
Org4
151 +
Org5
<151
Org5
151 +
Org6
<151
Org6
151 +
Org7
<151
Org7
151 +
Org8
<151
Org8
151 +
Org9
<151
Org9
151 +
Whole
<151
Whole
151 +
PercentagescoreonASM
Active Support: People with More Severe Disabilities vs.
People with Less Severe Disabilities
Target
66%
• More able people experience better active support - exception Org 6 (& Org 7)
• Only 3 orgs provide consistent good active support for more able people
• Org 6 is supporting more severely disabled people better (although not statistically
significant) Sig difference

18. Observed and Self Report - Supporting Choice
36%
28%
63%
12%
53%
32%
9%
52%
41%
28%
31%
28%
13%
76%
27%
37%
45%
0%
28%
40%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Not offered any
choice
Supported well
to make choices
• Discrepancy staff rated and observed choice.
• Only 1/3 residents observed as supported well to make choices - much higher staff rated
scores (51%).
All
N=189
Org 1
n=20
Org 2
n=16
Org 3
n=17
Org 4
n=17
Org 5
n=23
Org 6
n=13
Org 7
n=25
Org 8
n=31
Org 9
n=27

19. Support for Communication
 32% of sample no verbal communication
 Only 6% of non verbal residents received any adaptive
communication that appeared to be effective.
 Increase for 3 of the 4 Vic orgs since 2012
All O1 O2 O3 O4 O5 O6 O7 O8 09
N/n 63 2 12 3 0 8 6 23 3 6
Number receiving good
adapted communication
4 1 0 2 N/A 0 0 0 1 0

20. Observed Practice Leadership – PL Measure
% Good or
Excellent
All O1 O2 O3 O4 O5 O6 O7 O8 O9
46 4 5 5 4 7 4 4 7 6
Manager
focus
20% 0% 20% 60% 0% 14% 0% 25% 14% 33%
Allocating
Staff
17% 25% 20% 80% 0% 0% 25% 0% 14% 0%
Coaching
Staff
11% 0% 40% 20% 0% 14% 0% 0% 14% 0%
Supervision 11% 0% 40% 20% 0% 14% 0% 0% 14% 0%
Team
Meetings
22% 0% 20% 80% 0% 29% 0% 0% 43% 0%
Overall 11% 0% 20% 60% 0% 0% 0% 0% 14% 0%
• Practice leadership generally poor – 11% good or excellent
• Only one organisation (3) had higher scores
• Big discrepancy between observational measures and staff ratings of PL,
particularly senior managers and house supervisors ratings.

21. Relationship between PL Scores,
Engagement, ASM Score & Assistance
 First evidence of relationship between PL and Active Support and
Engagement
 As PL so low in most services, not enough variability to produce very strong
relationships – this will hopefully change overtime.
 Significant relationship Active Support and overall PL score on 3 domains
 Allocating staff
 Team meetings
 Manager focus
Allocating
Staff
Coaching Supervision
Team
Meeting
Manager
Focus
Average PL
Score
Any Engagement .245**
-.116 .029 .180*
.088 .094
ASM Score .257**
.143 .105 .265**
.225**
.234**
Assistance .004 .007 -.039 .041 .010 .012

22. 2 2 2 4 3 4 1 1 3 3 3 2 2 2 2 3 2 3 2 3
Staff Support: Active support - People Observed
with PL Absent vs. People Observed with PL
Present
Target
66%
 Staff support better when the PL present in the house during the
observation
Sig difference
Mean PL
Score:
0
20
40
60
80
100
PercentagescoreonASM

23. Outcomes Perceived by Staff to be Prioritised
All O1 O2 O3 O4 O5 O6 O7 O8 O9
N/n 153 17 9 21 4 16 24 21 16 25
Overall Task
importance to
staff index
M 0.41 1.65 -1.11 0.81 0.00 0.69 0.79 -0.19 0.13 -0.04
Range
-5.00-
5.00
-1.00-
3.00
-3.00-
1.00
-3.00-
3.00
-1.00-
1.00
-2.00-
3.00
-5.00-
5.00
-3.00-
5.00
-3.00-
3.00
-3.00-
3.00
Overall
importance to
manager index
M -0.63 0.94 -2.56 0.62 -1.25 -0.81 -1.25 -0.29 -1.25 -1.12
Range
-5.00-
4.00
0.00-4.00
-5.00-
1.00
-3.00-
3.00
-4.00-
0.00
-5.00-
3.00
-5.00-
4.00
-3.00-
1.00
-3.00-
1.00
-4.00-
1.00
NB:
A negative score indicates that more “negative” items (not focusing on facilitating engagement, development and relationships) were scored in the top
5 items than positive items.
A positive score indicates that more “positive” items (facilitating engagement, development and relationships) were scored in the top 5 than negative
items
 Staff perceived managers prioritised admin rather than user enabling tasks
 No clear evidence resident outcomes perceived to be prioritised by either
staff or PLs
 Staff had slightly more positive views of their own priorities
 Enormous variability within and between organisations.

24. Conclusions and Implications
 Outcomes and staff practice well below what is possible - for same cost
 Substantial variability within and between organisations
 People with more severe disabilities get poorer outcomes and support
 Should not fund poor outcomes and poor staff support
 Set benchmark expectations for outcomes such as engagement –
demonstrable use of active support
 Change can happen - with a focussed attention
̶ Improvement in many of the organisations over 3 years
 Staff and Practice Leaders overestimate quality of their practice
 Power of Observation to make judgements - at least part of QA
 First evidence that practice leadership is important in determining
quality of support and engagement
 Practice leadership is fairly poor - Attention to PL skills and
support
 Articulate and build staff and front line leader competencies in
active support and PL .
 Future data understanding of organisational structures and processes

25. References
Beadle-Brown, J et al., (in press) Outcomes and Costs of skilled support for people with severe intellectual disability and
complex needs Mansell, Jim and Beadle-Brown, Julie (2012)Active support: enabling and empowering people with
intellectual disabilities. Jessica Kingsley Publishers, London
Mansell, Jim and Beadle-Brown, Julie and Macdonald, Susan et al. (2003) Functional grouping in residential homes for
people with intellectual disabilities. Research in Developmental Disabilities, 24 (3). pp. 170-182. ISSN 0891-4222
Schalock, R., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., et al. (2002). Conceptualization, measurement,
and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts.
Mental Retardation, 40(6), 457-470.
Mansell., J., Beadle-Brown, J., & Bigby, C. (2013) Implementation of active support in Victoria, Australia: an exploratory
study. Journal of Intellectual and Developmental Disabilities 38(1), 48–58 (download from
http://hdl.handle.net/1959.9/206149 )
Bigby, C., Knox, M., Beadle-Brown, J., Clement, T., Mansell., J (2012). Uncovering dimensions of informal culture in
underperforming group homes for people with severe intellectual disabilities. Intellectual and Developmental
Disabilities 50, 6, 452–467 (download from http://hdl.handle.net/1959.9/206141 )
Bigby, C., Cooper, B., & Reid, K. (2012). Making life good in the community: Measures of resident outcomes and staff
perceptions of the move from an institution. Melbourne: Department of Human Services:
(http://hdl.handle.net/1959.9/200242 other Making life good reports also)
Bigby, C. (2013). Tackling the crisis in disability group homes. Opinion on line, http://apo.org.au/commentary/tackling-
crisis-group-homes-people-intellectual-disability
Clement, T. & Bigby, C. (2010). Group homes for people with intellectual disabilities: Encouraging inclusion and
participation. London, Jessica Kingsley.
Bigby, C. Knox, M., Beadle Brown, J., Bould, E. (in press) Identifying good group homes for people with severe intellectual
disability: Qualitative indicators using a quality of life framework. Intellectual and Developmental Disability
Bigby, C., Knox, M., Beadle-Brown, J., & Clement. T., (in press) ‘We just call them people’: Positive regard for people with
severe intellectual disability who live in of group homes. Journal of Applied Research in Intellectual Disability.

26. Thank you
Contact
c.bigby@latrobe.edu.au
e.bould@latrobe.edu.au
j.d.beadle-brown@kent.ac.uk