latrobe.edu.au CRICOS Provider 00115M

Culture in good group homes for

people with severe and profound

intellectual disability

Professor Christine Bigby

Living with Disability Research

Group

2

Background

Group homes are vehicle for realising social policy goals of an ‘ordinary

life’ for people with intellectual disabilities.

Many people with severe intellectual disability live in group homes

(approx 35,000 adults in UK, 17,000 in Australia)

Good quality of life outcomes are possible (Kozma, Mansell, Beadle-

Brown, 2009)

Wide variation of outcomes

Outcomes in best institutions compare favourably to worst group

homes (Emerson & Hatton, 1994)

Measures of engagement 8-74% in group homes (Emerson & Hatton,

1994)

Victorian study 24 - 80% (Bigby, et al. 2013)

People with more severe levels of intellectual disability consistently

have poorer outcomes

3

Outcomes and Staff Practice High and Lower

Performing Organisations Sample average and people with higher support needs – variability across and between

groups

Work in progress Bigby et al.,

Whole Sample Org 1 Org 2

UK study

Good active

support

(Ashman, Beadle-

brown, 2006)

Engagement in

meaningful activity

and relationships

47% (31%) 64% (54%) 25% (16%) 60% (54%)

Quality of Support

(Person Centred

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 mins (25)

4

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 do much worse than 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

Sig difference

Support for 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

What influences outcomes

What makes a difference

Good quality of life outcomes when...... Complex interactions 6 main elements

Necessary but not

sufficient conditions

• Adequate resources

• Design - Size & Type

Coherence of organisational values

and policies & a mission that puts quality

of life of service-users at the core of

all actions • Organisational leadership policies and procedures

• Service characteristics

• Staff training

• Staff characteristics

An informal culture that is

congruent with and supports

the formal mission of the

organisation

Service user characteristics Organisational and staff

practices that compensate

as far as possible for

inherently disadvantageous

characteristics of residents

An external environment that is

congruent and reinforces the

mission and values of the

organisation

Staff and managerial

working practices that

reflect organisational

values and policies and

the principles of active support

Staff and managerial working practices that reflect organisational values and policies and the principles of active support

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

(Mansell & Beadle Brown 2012)

10

Person Centred Active Support

“Providing enough support to enable

people to participate successfully in

meaningful activities and relationships

(an enabling relationship)” (Mansell & Beadle-Brown 2012)

Evidence Base PCAS

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 (Mansell & Beadle-Brown 2012)

Recent findings also suggest

active support proxy for other person-centred approaches – PCP,

Spell, PSB, Effective communication

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 or cost significantly more – available

resources are used much more efficiently in services where the

support was skilled (Beadle-Brown et al, in press)

Culture – what does it look like

13

What is Culture

‘A pattern of shared basic assumptions that the group

learned as it solved its problems of external adaption and

internal integration, that has worked well enough to be

considered valid and, therefore, to be taught to new

members as the correct way to perceive, think, and feel in

relation to those problems”

(Schein, 1992, p.12)

‘The way we do things around here’

Important influence - little known about the nature of this

variable - what it looks like in group homes

Most well researched - institutional culture, block treatment -

rigidity depersonalisation - social distance (King, Raynes & Tizard,

1971; Goffman, 1961).

What we did – in group homes in Victoria

Ethnographic observation - extended period - different times of day and

days of the week

Observed practices, what people said and did and inferred values or

assumptions from comments and practices and concrete artefacts

5 underperforming group homes - from study of Kew closure (Making Life

Good Study)

209 hours of observation on 45 separate days

3 group homes identified as best of the kind for people with severe and

profound intellectual disability (Ordinary life study)

approx 100 hours on 20 separate days plus interviews staff and family

14

Dimensions of Culture – Underperforming

Group Homes -5 dimensions

15

Dimension Polar End Descriptor

Alignment of power-

holders with the

organisation’s values

Misalignment of power

holder values with

organisations espoused

values

‘We’re not going to do it

that way’.

Regard for service users As Other ‘Not like us’

Perceived purpose Doing things for ‘We look after them’

Working practices

Staff centred ‘Get it done so we can

sit down’

Orientation to change

and new ideas (Bigby et al. 2013)

Resistance ‘Yes but’

16

Dimensions of Culture in Better Group Homes Dimension Polar end Descriptor

Alignment of

power-holders

values

Alignment of power holder

and other staff values with

organisations espoused

values

‘vision and mission is exactly

what we live to’

Regard for

residents

Positive regard as part of

the same diverse humanity

‘like us’

Perceived

purpose Making the life each person

wants it to be

‘it’s her choice’

Working

practices Person–centred

‘the guys come first, no matter

what’

Orientation to

change and ideas

(Bigby et al, in press)

Openness to ideas and

outsiders

‘let’s face it, everyone can

improve’

Alignment - ‘vision and mission is exactly

what we live to’.

Undisputed leader whose values and practice reflect espoused

values of the organisation

There’s a standard she expects from everyone that works here

but she treats everyone the same. No favourites

If I had to discipline somebody or talk to them about something,

my approach to each person would be different. I feel that a

good manager, a really good manager is a leader and leads by

example I like to build trust and respect between all staff and

with myself, but also know that a manager has to wear the

manager’s hat when it’s needed.

18

Leadership in line with formal structure - no cliques

Staff share values of leader and the organisation

We all share the same work ethic …

Power and responsibility dispersed among staff for putting values

into practice

Practice doesn’t change when the leader isn’t there – staff monitor each

others practice

Managers are not always around and you have to step up to the

occasion and lead the way for new people coming in.

Madge mentioned there have been a few incidents where

choice has been compromised for the residents…by the casual

staff and she says this means the permanent staff have not

been doing their job of shaping their practice

19

We just call them people, like I would call you a person, that just

seems way more respectful, and I think it gives everyone the

attitude, around how you’re thinking too.

People who can feel – think – understand – benefit from new

experiences – are company – have conversations with

Adele then has a lengthy conversation with Seth about the

recent basketball tournaments her children have played in. The

conversation is mainly one way, but Seth will make a

vocalisation that Adele interprets as ‘Why?’, which leads her to

give an answer.

He’s flown up to Cairns, he’s flown to Darwin, he’s flown to the

Gold Coast, and we just have a ball. ..He absolutely takes

everything in, he just loves everything about going away, and the

new experiences. He gets so much out of it.

Positive regard as part of the same diverse

humanity ‘like us’

20

Acknowledging rather than denying difference

He relies on my judgement a lot I suppose, what we do and

where we go, which is okay, because the basic fact is that Hank

can’t tell me exactly what he wants to do, but we try and find

stuff that he likes to do.

Reba understands everything that you say, and Reba will let you

know she is not happy. Reba understands a joke and Reba will

laugh, or giggle, or Reba will grunt if she’s not happy about you

doing something or you move her too fast.

21

Purpose - Making the life each person

wants it to be ‘it’s her choice’ So it’s being able to speak on their behalf, and understand

them, what they like and what they don’t like. If I’m making their

life what they want it to be, as best as I can, from what I know of

them.

Recognising and respecting choice

You try and involve them but a lot of the time they don’t want to.

Like Edie I did have her involved in baking the cake but she’ll

prefer to be interactive with you, clapping or what-ever than

baking.

Bruno leads a conversation about where Seth wants to go. It is

worked out that they will go to Knox City Mall, where Seth will

get a haircut, get something to eat, and have a head massage.

Bruno tells me that although the Knox mall is further than some

of the local shopping centre it is one that Seth prefers

Including and engaging

Both Seth and Bruno scream as we drive away. On the journey,

Bruno includes Seth in the conversation: ‘I’m having to pull into

the inside lane. I’ve got some speedster on my tail.’ … and after

a ‘1-2-3’ they both holler

we go up there sometimes, just to go and sit in the park and

have fish and chips, and people know him, from the footy club,

because it’s only a small place, and they’ll come up and chat to

him

There were photographs of Cain washing and drying dishes and

making a smoothie.

We just keep trying things and if she’s smiling we figure she

must be having a good time.

22

23

Ensuring dignity, care and comfort

Recognition that personal care and health are fundamental to people

with higher support needs – and take up a lot of time

Stephanie [staff] feels Hank’s legs to make sure that he is not

getting too warm. He is wearing black sweat pants which

‘absorb the heat’. “You love the warmth,” she says. She notices

that Hank needs adjusting in his chair and calls out Daisy to

help her move him upwards.

I think they feel very safe… they’re never left with strange

people, or if there is somebody, a new person, there’s always

somebody who’s been there, you know, for a few years with

them, so they feel very safe.

A staff member makes the chiffon scarfs. They are sewn into a

tube and are placed over people’s head, which disguises the

protector underneath. They try and match them to people’s

clothes. It is a nice touch

24

Practice - Person–centred ‘the guys come

first, no matter what’ Flows from purpose

If you focus on the residents first all the other things fall into

Attentive

The staff member says that Hank was listening to Harry Potter on

an audio book, and “He went berserk. He was cracking it”. She

explains that he was telling us that he had heard it before and

didn’t want to listen to it again.

When Jake’s had to go to hospital, I’ve been there, and I’ve said

to the staff: “Oh, he’s about to have a seizure”, and they’ll say:

“How do you know that?” I explained it’s just because I know

them.

Ivan’s sister is having a baby, due any time soon. Zadie [staff]

wants to be notified when the baby is born, so that she can come

in and take Ivan down to see his new niece or nephew.

25

Relational and committed

I don’t know how you can do your job and not become

attached?

I don’t know how much, but and I’ve built up a relationship with

Matt, so I regard him as my friend, and so I just try and do

things that I would do, to certain extent, with my mates.

The guys here are just amazing. You form a relationship with

them and they’re just part of your life…They’re wonderful.

They’re just amazing people.

The staff paid for Paige to have her hair and make-up

professionally done for the party

26

Flexible

If the residents are not ready the bus has to wait says Hetty: ‘We

don’t care’ she adds, suggesting that supporting the residents is

more important

Venus tells me that you are entitled to a half-hour break for a

six-hours shift. She says that you have to be very flexible. On

some shifts you miss your break. She does not direct staff where

or when to take their break.

Keeping it fun

Pearl takes the pills and some chocolate mousse down to Edie’s

bedroom, where Edie is lying in her bed. She knocks on the

door, goes in, nudges Edie and speaks to her. Edie opens her

eyes and wants to hold Pearl’s hands. They hold hands and clap

them together.

Sandra brushes Penny’s lips with the loaded spoon. Penny

seems reluctant to eat. Sandra puts down the spoon and sings

‘Let do the time warp’ and rubs her chest.

27

Openness to ideas and outsiders - ‘let’s

face it, everyone can improve’

Permeable boundaries, part of bigger organisation, part of

community

In terms of feedback [about the research findings] a verbal

presentation was preferred and there were no worries about

managers or families being invited. A party was suggested as

the preferred format!

Fawn’s mother is coming for her regular weekend visit this

afternoon. She wants Lance [staff] to help her with pruning the

garden

We work as a team. Like everything is discussed…we talk about

issues with the residents. We even ring each other up at home

and say ‘look I’ve been thinking about such and such

What generates ‘good’ culture Organisational leadership policies and procedures

29

HR Policies Regulating entry to organisation

• Recruitment – job descriptions reflect expectations

• Induction separated from orientation - practice same weight as

procedures

• close scrutiny of casual and prospective staff

Even if they [casual] are a bit messy, we think, 'Ooh, we can

work on that person' because they’re fantastic with relating to

everyone who lives here…We think, 'Alright, you’re a little bit

messy, we’ll fix you up, (laugh), we’ll neaten you up’.... you can,

just follow instructions ‘til you know what to do yourself.

• HR support to front line leaders – staff management

Regulating entry to specific group homes - groups of service users

• Buddy shifts

30

Explicit Translation of Values – no doubt

what’s expected Orientation values

What we expect of you: We expect you to treat ALL individuals

with respect, dignity, empathy, sensitivity, and to listen, learn and

act on individuals needs, wants and desires, which encourages

participation in THEIR life.

Language and communication policies

staff will, ‘use language that reinforces the individuality and

humanity of those people [who access our services] and

emphasizes the fact that they are, like the rest of us, a valued,

member of the community in which we live’.

First person language plans, communication books

Artefacts – pictures with family - holidays

.

31

Strategic Practice Leadership I knew that I could manage a team of staff in a way that they

would have respect for me, but also give the best of

themselves, but I knew that there was a couple of people that

had to go.

Organisation of work – few times when staff work alone

• Roster planning –new staff rostered along side more experienced ones

Walking the talk

• good practice modelled and new staff exposed to knowledge about

service users

Fostering Team work

And I like to empower the team, I like to empower individuals,

give them responsibilities to skill them up. I know that I can leave

Tiger Street any single one of those staff can manage for a short

period of time…They know what’s required to make sure the

house can function, at a certain level.

What affects practice - Practice Leadership * Relationship between Practice Leadership Scores, Engagement & ASM Score

• Evidence of relationship between Practice Leadership and Active Support

and Engagement

• Significant relationship between Active Support and overall PL score on

three domains

• Allocating staff - Team meetings - Manager focus

• *note all figures are from work in progress –see reference list for published studies

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**

33

Summary of Good Group Home Culture

Iterative and Mutually Reinforcing

Power-holder and staff values aligned with the organisation’s values

Positive regard for service users as part of humanity

Permeable

Person centred working practices

Coherent values

Motivated to make the life that each

person wants it to be Choice – including and engaging – dignity, care and comfort

Attentive – relational and committed – flexible - fun

Open to ideas and outsiders

34

Becoming clearer – what it takes to deliver

good practice Not done by individual worker in isolation – not training

Lots of propositions – about infrastructure –

Most evidence

Culture quite different where better outcomes

Practice leadership - strategic, coaching, modelling, supervision, team

work, planned use of staff.

HR practices

Challenge to create and support conditions necessary for good practice

Staff over estimate outcomes and quality of their own practice

Observation not paperwork a better way to make judgments and

reinforce good practice

Indicators of effective services – based on evidence – work on ways of

ensuring consumers know and NDIS enables purchase

Guide to good group homes – for community visitors (Bigby & Bould 2014)

35

References

Many of those authored by LaTrobe authors are available on open access in the LaTrobe Research Repository

http://www.latrobe.edu.au/library/research-and-grant-support/research-online

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.

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

Clement, T., & Bigby, C. (2010). Group Homes for People with Intellectual Disabilities: Encouraging

Inclusion and Participation. London: Jessica Kingsley Publishers.

BigbyC. & Bould. E. (2014) Guide to good group homes.

http://webstat.latrobe.edu.au/url/hdl.handle.net/1959.9/308955

Bigby et al, Making life good reports see

http://arrow.latrobe.edu.au:8080/vital/access/manager/Repository?start=1&query=bigby

Beadle-Brown, J, Mansell, J., Ashman, B., Ockenden, J., Iles, R., & Whelton, B. (2014). Practice

leadership and active support in residential services for people with intellectual disabilities: an

exploratory study. Journal of Intellectual Disability Research, 58(9), 838 -850.

36

Beadle-Brown, J., Bigby, C., Bould, E. (submitted). Development of an observational measure of practice

leadership. Journal of Intellectual Disability Research.

Beadle-Brown, J., Leigh, J., Whelton, B., Richardson, L, & Bradshaw, J (submitted a) Quality of life and

quality of support for people with severe intellectual disability and complex needs. Journal of Applied

Research in Intellectual Disabilities.

Beadle-Brown, J., Beecham, J., Mansell, J., Baumker, J., Leigh, J., Whelton, B., & Richardson, L.

(submitted b) Outcomes and costs of skilled support for people with severe or profound intellectual

disability and complex needs. Journal of Applied Research in Intellectual Disabilities.

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

Mansell, J., & Beadle-Brown, J. (2012). Active support: Enabling and empowering people with intellectual

disabilities. London: Jessica Kingsley Publishers.

Schein, E. H. (1992). Organizational culture and leadership (2nd ed.). San Francisco: Jossey- Bass Inc.

King, R. D., Raynes, N. V., & Tizard, J. (1971). Patterns of residential care: Sociological studies in

institutions for handicapped children. London: Routledge & Kegan Paul.

Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people

with intellectual disability: A systematic review. American Journal on Intellectual and Developmental

Disabilities, 114(3), 193-222.

Goffman, E. (1961/1978). Asylums: Essays on the social situation of mental patients and other inmates.

London: Pelican Books.

37

Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people

with intellectual disability: A systematic review. American Journal on Intellectual and Developmental

Disabilities, 114(3), 193-222.

Goffman, E. (1961/1978). Asylums: Essays on the social situation of mental patients and other inmates.

London: Pelican Books.