culture in good group homes keynote presentation scope conference melbourne sept 2014 chris bigby
DESCRIPTION
What makes a difference to outcomes in group homes for peopel with severe and profound intellectual disability - practice and culture. Keynote presentation decribing the very different culture in group homes that have positive outcomes and good practice.TRANSCRIPT
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**
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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.
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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.