Active Support

1
Active Support

• Dr. Sandy Toogood BCBA
• 25th April 2008
• North East Wales NHS Trust
• Bangor University

ARC North Wales Active Support Conference WCVA,
Morfa Hall, Bath Street, Rhyl, Denbighshire LL18
3EB
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An Ordinary Life

• An Ordinary Life is defined by what you do, and
  where, when, how, and with whom you do it not
  just where you live.
• Active Support helps staff provide the support
  and assistance every individual needs to take
  part in everyday activities, irrespective of the
  degree of their disability.

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An Ordinary Life

• From Mansell, et al. (2005) Person Centred
  Active Support

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Things that get in the way

• The nature of disability.
• The way we provide residential services.
• The way we organise residential services.

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Presentation Outline

• What is Active Support?
• Learning about Active Support
• Research on Active Support
• Future directions for Active Support

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History

• Historical events as they relate to Active Support

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1950s

• Fuller (1949) works with a person with ID.
• 1953 Royal Commission on Mental Health proposes
  the closure of all psychiatric hospitals in the
  UK.
• 1953 B.F. Skinner publishes Science Human
  Behaviour.
• 1959 the first Mental Health Act comes into force
  in the UK.
• 1959 Bank Mikkelson introduces egalitarian
  principles into Danish law on disability.
• 1959 The Nurse as the Behavioural Engineer

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1960s

• 1963 J.F. Kennedy makes a speech on mental
  disability to congress.
• 1964 Rosa Parks and the birth of the civil
  rights movement.
• 1965 Jack Tizard and Albert Kushlick set up
  Westwood House and the Wessex experiment.
• 1968 JABA launches applied behaviour analysis
  globally.
• 1969 Bengt Nirje publishes a Swedish formulation
  of the Normalisation Principle.
• 1969 A series of scandals breaks in the UK press
  about the treatment and living conditions in
  institutions for people with ID.

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1970s

• 1971 Government responds to scandals with the
  Better Services white paper.
• 1972 National Development Group established in
  the UK
• 1972 Wolfensberger publishes Normalization Theory
  for the first time.
• 1972 Behaviour modification becomes more common
  in human service environments in the UK.
• 1973 Oil crisis and 3-day week.
• 1974 Children with ID gain the right to
  education.
• 1975 Marc Gold Try Another Way.
• 1975 Goldiamond constructional approaches to
  behaviour change.
• 1975 Wolfensberger publishes PASS.
• 1979 NIMROD is planned in South Wales as a model
  for community services.

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1980s

• 1981 Ordinary Life (Kings Fund).
• 1981 Andover Project commences in Hampshire as
  an extension of the Wessex experiment. AS is
  developed and procedures described.
• 1981 First Normalisation w-shop in UK.
• 1983 Wolfensberger publishes PASSING.
• 1986 Results from Andover research begin to be
  published.
• 1986 Major hospital closure start of Special
  Development Team.
• 1987 OBrien describes 5 service accomplishments.
  
• 1987 AS materials updated (Brown, Toogood
  Brown, 1987).
• 1988 Sandy Toogood and Heather Hughes develop the
  Interactive Training model.
• 1989 Framework for Accomplishment w-shops in UK.
• 1989 Aversive debate grows in the behavioural
  sciences.

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1990s

• 1990 Person centred approaches develop in the
  USA.
• 1990 Positive Behaviour Support develops in the
  USA.
• 1990 Deinstitutionalisation gets underway in USA
  and UK.
• 1991 Economic slowdown in the UK.
• 1995 Normalisation ceases to be taught in UK but
  finds practical expression in policy documents.
• 1996 Active Support first empirical research in
  the UK (Jones et al, 1999).
• 1996 Active Support materials are updated (Jones
  et al, 1996).

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2000 beyond

• 2000 PCP begins to achieve broad acceptance in
  human service environments.
• 2001 Valuing People and Fulfilling the
  Promises are published in England and Wales.
• 2002 PBS gains broad acceptance in the UK.
• 2004 AS is disseminated in the UK and abroad.
• 2008 Here we are today!

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Part 1

• What is Active Support?

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What is Active Support?

• Values, philosophy and orientation
• Person centred
• Contextual
• Transactional
• Structured approach for
• Implementing individual person-centred plans,
• Organising the home community environment,
• Evaluating personal outcomes and service effort.

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Outcome

• Engagement meaningful participation in
  purposeful activity.

Input
Transformation
Output
Outcome
Building Location Design Staffing
Engagement Participation Learning Fulfilment
Effective person-centred support, organised home
and community life.
Active Support
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Theoretical and Scientific Basis of Active Support
Normalisation Theory (SRV)
Applied Behaviour Analysis
Constructional, functional, non-aversive
approaches to skill building, working with
challenging behaviour and staff training
Re-valuing people at risk of being devalued
inclusion, rights, relationships, autonomy,
competence, imagery - role building.
Deinstitutionalisation
Quality of Life
Community Care
An Ordinary Life
ACTIVE SUPPORT
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Quality of Life
Objective life conditions
Overall assessment of well-being (Quality of
Life)
Subjective well-being
Personal values and aspirations
Adapted from Felce and Perry (1995)
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The Active Support Model
Keeping Track
Routines and Rhythms of life
Person Centred Plans
Activity Scripts
Learning Plans
Regular Team Meetings
Activity and Support Plans
Opportunity Plans
Using Community and Generic Services
Behaviour Support Plans
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Supporting Learning and Engagement
Person Centred Plan
Learning plans
Opportunity Plans
Engagement Social participation Learning
Activity Support Plans
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Active Support
Quality Management Group
CONTEXT
TRANSACTIONAL
PERSON-CENTRED
Get ready for PCP
Household routines and standards
Person-Centred Action
Interactive Trainingskills based staff learning
Participation Index Community Participation
Index Personal Learning Outcomes Personal
Behavioural Outcomes
Personal Opportunity Plan
Group trainingknowledge based staff learning
Personal Learning Plan
Activity scripts
Personal Routines Activity Scripts
Individualmulti-media competency-based training
for personal development
Flexible Activity Support Plans
Communication Control
Staff support, supervision feedback for
emotional and psychological wellbeing
Regular and frequent team meetings
Behavioural Intervention Plan
Intensity Relevance Balance
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Three Dimensions of Person-Centred Support

• Intensity
• Relevance
• Balance

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My Person Centred Plan

• I have whats called a Person Centred Plan. Its
  all about me.
• All the plan does is help staff focus on me, what
  I like and what needs to happen to make my life
  as good as it can be.
• Staff like it because it makes their job clear
  and helps them work together as a team.
• They make graphs that show how well I and they
  are doing. They pass these on to their managers
  and the people who pay for my services.

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Getting Ready for PCP

• My Personal Advocate helps me prepare my agenda
  for my person-centred review.
• I get to express my hopes and aspirations,
  personal strengths and needs.
• People who know me well make suggestions about
  what they think I would like and what they think
  my hopes and aspirations, personal strengths and
  needs are.
• A co-ordinator holds a meeting in which people
  turn my ideas into goals.
• They write goals about creating new opportunities
  for me to do things I already know how to do, and
  things I can learn to do that will help me
  increase my independence.
• This is all put down in a really neat document
  and written into a special file on the computer.
• Every week, staff use my plan to help them decide
  what they can do to help me achieve my goals.

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My Person Centred Action Plan

• My plan has a lot of really important stuff in
  it.
• It makes sure I have continuity in my life and
  that Im happy about where I live and what I do
  with my time.
• It checks that my behaviour is ok and connects
  nicely with my personal system of communication
  and my multi-component intervention plan.
• It has lots of really clear statements in it
  about what Im going to do over the coming year
  and stuff I am going to learn.
• My plan is really well balanced. It covers time I
  spend in my community, my relationships, how I
  look, my behavioural ability, and how to maximise
  autonomy and choice.
• And before its done, staff check the plan to
  make sure theres enough in it and that it
  matches what I want, and what I need.

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My Personal Opportunity Agenda

• A lot of plans fail because staff dont have good
  ways to implement them.
• My Personal Opportunity Plan gives staff a way of
  planning, organising and monitoring what theyll
  do, when and how theyll do it.
• This allows them to focus on things together,
  around me as an individual.
• Staff take into account everything Im doing at
  any given time, so I always feel my life is in
  balance
• they make sure I dont have too much or too
  little to do, that the things I do are not too
  difficult for me, and that I have plenty of
  variety in my life.

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My Personal Learning Agenda

• You know, I need more help to learn certain
  things than most other people, because I find
  learning more of a challenge than most other
  people.
• This doesnt mean that I cant learn though, or
  that I dont want to.
• Staff help me learn by encouraging and helping me
  to do everyday activities things most people
  take for granted.
• When Im struggling to learn something really
  important, staff have a couple of ways of
  organising themselves to be more consistent about
  how they support my learning.
• Sometimes they just write down a really clear
  goal and keep a simple record of how my learning
  is progressing. And sometimes, they break a
  really difficult task into smaller parts and
  teach me a bit at a time. Staff usually work from
  teaching scripts when they do this, but not
  always.

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My Personal Routines Activity Scripts

• Several staff help with my personal routines.
  They all have different ways of doing things and
  they all expect me to do things their way and to
  their standard.
• I find this confusing and I have learnt that the
  best tactic is to wait to be told what to do
  next. They say Im prompt dependent, but its
  just a way of coping. I dont like it because
  there are lots of things I am perfectly capable
  of deciding for myself that I dont get to
  decide. Occasionally, I get challenging about it
  and try to get out of doing things the staffs
  way.
• Staff wrote out some simple scripts for
  themselves. These are not complicated, they just
  say how I like to do things and in what order I
  like do them. They also wrote some scripts for
  all of us to share who live in the house. Its
  our way of living together.
• This is great because I now know exactly what Im
  doing. I am in control. Each member of staff only
  has to know two things his or her way and my
  way. Before I had to know about ten different
  ways of doing everything!

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My Personal Communication System

• It probably sounds obvious, but the fact that I
  cant speak doesnt mean Im non-verbal.
• I understand a lot of what goes on around me by
  picking up cues.
• Things improved when staff started using objects,
  pictures and symbols to let me know what is
  happening now, next, and then after that. I even
  get to make some choices. They call this
  receptive communication.
• Things got even better when staff got into
  expressive communication. Suddenly, I can get
  hold of the things I need without too much
  effort. I use a special set of pictures to let
  staff know when I want something. All of the
  staff know the pictures theyre just like words
  really.
• I find routines quite liberating as well.
  Everybody knows how to support me, automatically,
  and I dont have the problem of communicating my
  wishes over and over again.

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My Multi-Component Intervention Plan

• I know some of my behaviour can be a bit of a
  challenge for others.
• Staff know what sets me going and why its been
  this way until now. They know all this because
  they did a functional assessment.
• After they finished they wrote down a few things
  they could do to make it less likely my
  challenging behaviour would occur. They also
  worked out what I could learn to do instead of
  challenging them with my behaviour, and how they
  were going to deal with things in the meantime.
• Staff keep good records of what they do and how
  my behaviour is changing.
• Apparently, intervention plans are best when they
  have several components working together at the
  same time. Staff check to see that all the
  components of my intervention plan make sense
  with each other, and that they did not clash with
  anything in my PCP.

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Keeping Track

• Staff keep records. Mostly, these are simple tick
  charts that dont take up much of their time.
• Staff look at the information on these charts to
  keep track of what theyve done and to help them
  decide what to do next.
• Because staff work shifts they dont always see
  the big picture. The information on these
  charts helps staff see my life in the round.
• At the end of each planning cycle, staff gather
  up all the information and make a brief report.
• This allows staff to celebrate their achievements
  and makes the service accountable to me.

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Example

• Graphs Presentation Anon.ppt

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Staff Training

• Working this way requires staff get some
  training. Training happens four ways
• Staff attend workshops together.
• Staff get on-the job-training.
• New staff study specially prepared training
  materials.
• All staff get regular support and supervision
  from their managers.

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Part 2

• Learning about Active Support

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Training Materials
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Learning to Implement Active Support

• Working through prepared materials in a training
  workshop.
• Reading and following a series of Booklets that
  describe how the components work.
• Interactive Training - working with practice
  tutors in a real situation.

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Typical Workshop

• Introduction to Activity and Engagement.
• Mapping weekly routines.
• Developing Activity Support Plans.
• Writing Activity Scripts.
• Setting up Community Logs.
• Working with Behavioural Objectives.
• Writing Opportunity Learning Plans.

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Typical Interactive Training

• Individually tailored training sessions.
• On-site and context specific.
• All staff participate in 3-5 days.
• Sessions data-based three phases
• Structured observation feedback
• Coaching feedback
• Structured observation feedback
• Inexpensive and apparently effective.

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IT Training Data

• Staff on-task improved.
• Engagement increased.
• Challenging behaviour reduced.

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MTS Study
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Part 3

• Research on Active Support

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AS Studies

• Andover Project (Felce, 1989)
• Special Development Team (Emerson, McGill and
  Mansell, 2001)
• Experimental MBL (Jones, et al 1999)
• Large Group Evaluation (Jones, et al, 2000)
• Natural Experiment (Mansell, et al, 2002)
• Comparison Group (Bradshaw, et al, 2004)
• Multiple Baseline (Stancliffe, et al, 2007)

• Forthcoming special issue on AS research in the
  Journal of Intellectual and Developmental
  Disability, June 08.
• Detailed review in Totsika, V., Toogood, S.,
  Hastings, R.P. (2008). Active Support
  Development, evidence base and future directions.
  International Review of Research in Mental
  Retardation.

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Engagement and Social Contact
Source Emerson and Hatton 1994
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Research Themes

• Engagement is predicted by behavioural ability
  and assistance from staff.
• Social contact generally, and staff assistance in
  particular, are often in short supply, even in
  highly staffed community homes.
• Staff assistance is often inversely related to
  the behavioural ability of clients.
• Engagement among people with severe or profound
  intellectual impairment is often very low.

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General Findings

• The level and effectiveness of staff assistance
  has been found to increase following Active
  Support training, but only when it is fully
  implemented.
• Deployment of staff assistance matches the
  behavioural ability of clients.
• Client engagement increases correspondingly.
• Impact on challenging behaviour is mixed.
• Effects maintain over time gt up to one year
  later.

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Part Four

• Active Support Current and Future Directions

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Current Future Directions

• AS and Challenging Behaviour.
• AS component analysis.
• CD-ROM self-instruct package.
• AS for children and young persons.
• AS in families other settings.

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A CONTINGENCY DIAGRAM KEY white client / red
carer
Establishing Operation
Discriminative Stimulus
Response
Reinforcement
Abolished
Learning history
Establishing Operation
Reinforcement
Learning history
Discriminative Stimulus
Response
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A CONTINGENCY DIAGRAM KEY white client / red
carer
Attention Deprived
Person Present
Hit Head
Receive attention
Cease SIB
Head hits get attention
Escape Aversive SIB
SIB stops
Say No stops SIB
Say No
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A CONTINGENCY DIAGRAM KEY white client / red
carer
Aversive Task Demand
Hit Head
Task Removed
SIB stops
Head Hits avoid demands
Aversive SIB
Reinforcement
Avoid Making Demands
Remove Demand