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

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

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

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)

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

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

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

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?

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)

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

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)

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

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)

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).

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**

0

20

40

60

80

100

Org1<151

Org 1151 +

Org2<151

Org 2151 +

Org3<151

Org3151 +

Org4<151

Org4151 +

Org5<151

Org5151 +

Org6<151

Org6151 +

Org7<151

Org7151 +

Org8<151

Org8151 +

Org9<151

Org9151 +

Whole<151

Whole151 +

Pe

rce

nta

ge t

ime

sp

en

t e

nga

ged

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

0

20

40

60

80

100

Org1<151

Org 1151 +

Org2<151

Org 2151 +

Org3<151

Org3151 +

Org4<151

Org4151 +

Org5<151

Org5151 +

Org6<151

Org6151 +

Org7<151

Org7151 +

Org8<151

Org8151 +

Org9<151

Org9151 +

Whole<151

Whole151 +

Pe

rce

nta

ge s

core

on

ASM

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

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 anychoice

Supported wellto 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

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

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.

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

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

Pe

rce

nta

ge s

core

on

ASM

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.

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

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.

Thank you

Contact c.bigby@latrobe.edu.au

e.bould@latrobe.edu.au

j.d.beadle-brown@kent.ac.uk