Imaging the Future Canberra Support for a productive

Imaging the Future Canberra Support for a productive Life – Part 2 18 th May 2016 Ian Mc. Lean, CEO GCSS Ian. mclean@gcss. org. au

NDIS Adult Outcomes Choice & Control Daily Living Activities Relationships Home Health & Wellbeing Lifelong Learning Work Social, Community & Civic Participation

Supporting to achieve these personal outcomes What needs to be in place for the people being supported to achieve: 1. Independence, 2. Productive/Purposeful Life 3. Being In and Part of a Local Community (Prof. Robert Schalock)

Person C From: To: In 2006 to before coming to GCSS; two staff active 24 hrs a day, two person physical restraint, put in back yard to ‘calm down’ Making choices and decisions about everything to do with her day to day life, engaged with all activities of daily living (many done with no staff support or verbal prompts), accessing community education two mornings a week with no staff support, beginning to use taxis with no staff going on the journey, engagement with community i. e. community breakfast, shopping, banking, goes out for dinner, goes out for lunch with a friend, beginning her first job Saved $2, 107, 635. 68 over seven years of support

Person R From: To: Being seen as too difficult to support Participates in all his activities of Daily Living, has choice in his day to day life, involved in community meal and spending time with friends and family, begun shopping for some items with no staff support in store, goes to holiday resorts for holidays, has begun first job Saved $249, 855. 69 over nine years of support

Building Leadership and Organisational Capacity has been a Process not an Event Uncertainty to Interest - Interest to Influence – Influence to Implementation and Ownership

80 -90% of organisations providing services to people with intellectual disabilities will have times when people exhibit serious episodes of challenging behaviour Approx. 25 - 40 per cent of people with learning disabilities will exhibit serious challenging behaviour at times & there is a small group that are at a point of exhibiting severe challenging behaviour frequently Estimate of Intellectual Disability in ACT approx. 1% or approx. 4, 000 People exhibiting episodes of challenging behaviour in ACT in any given year 1000 -1, 600 Dr. Chris Fyffe chapter 8 Ozanne e. (et al) (1999)

There are many different types of behaviours that can be termed challenging: Self-injurious behaviour includes head-banging, scratching, pulling, eye poking, picking, grinding teeth, eating non-foodstuffs. Aggressive behaviour toward others includes biting and scratching, hitting, pinching, grabbing, hair pulling, throwing objects, verbal abuse, screaming, spitting. Stereotyped behaviour including repetitive movements, rocking, repetitive speech and repetitive manipulation of objects. Non-person directed behaviour includes damage to property, hyperactivity, stealing, inappropriate sexualised behaviour, destruction of clothing, incontinence, lack of awareness of danger, withdrawal. Mansell

People Presenting with a History of Severe Challenging Behaviour Population at end Sep qtr 2011 People Presenting with Severe Challenging Behaviour (24/100 k of general population) New South Wales 7, 317, 500 1756 Victoria 5, 640, 900 1354 Queensland 4, 599, 400 1104 South Australia 1, 659, 800 398 Western Australia 2, 366, 900 568 Tasmania 511, 000 123 Northern Territory 231, 200 55 Australian Capital Territory Australia(a) 366, 900 88 22, 696, 000 5447

People with Severe Challenging Behaviour Benefit Most from Community Living People with severe challenging behaviour show the greatest improvement in Quality of Life when moved from institutional accommodation and institutional care to community living and skilled support Mansell, Journal of Intellectual & Developmental Disability, June 2006; 31(2): 65– 76

Typical support for people with severe intellectual disability characterised by: Not enough to do Not enough help Poor communication Inconsistent or no support Attention focused on problem behaviour and only ‘managing the moment’ Reliance on punishment such as time out, ‘logical’ consequences, restraint Needs of the organisation come first Insistence on the right to exclude and restrict Mansell

UK Report into the Winterbourne scandal reflected : “We should no more tolerate people being placed in inappropriate care settings than we would people receiving the wrong cancer treatment” And went on to recommend the following proven practice : (Transforming Care: A National Response to Winterbourne View Hospital)

Essential Proven Frameworks When Working with People Who at Times Respond to Their World with Serious Challenging Behaviour – – – – Positive Behaviour Support, Person Centred Active Support, Total Communication, Recognising and responding to mental health problems Person Centred Planning Developmental Learning and the capacity to sustain staff practice Mansell, Services for people with learning disabilities and challenging behaviour or mental health needs, DH UK, Oct 2007

Person Centred Active Support begins by examining the every day activities in a persons home and building for self determination, involvement and personal development. (Mansell et al 2005) Every moment has potential for engagement

A Question of Support Independent Can a person do it for themselves? Can a person do it with adaptive technology? Support Required Are there natural supports available? Does the person require staff support? – – – A watchful eye Voice prompts Assistance with part of the task Hand on hand Staff to perform the task on the person’s behalf Life Long Learning What are the developmental steps for the person to do this more independently in the future?

Also Organise the Basic Assessments Full behavioural analysis Complex communication assessment Sensory assessment Mental health assessment

Challenging behaviour: elements of intervention Proactive Strategies – Environment Change – Skills Development – Direct Treatment Reactive management The majority of this is occurring while the challenging behaviour isn’t.

Resolution Escalation What Strategies Would You Use For Secondary Hazard Prevention? Spicer and Crates ASID Conference Sydney 2013

Spicer and Crates ASID Conference Sydney 2013

Skilled and adequate Early Intervention Services are crucial if we are to reduce the number of children developing severe challenging behaviours in the future.

Organisations must develop a Safe System of Work: In the absence of proven approaches: organisations and staff are left with the self perpetuating reactive strategies of chemical restraint, physical restraint, seclusion, punishment, restrictions and providing more and more staff; these are high cost, low effectiveness and most unsafe options And people who benefit most from the richness of a community life miss out

Skill and Proficiency of Staff

We are guaranteed to fail in our mission if we only invest in verbal competency Verbal competency Role play competency In vivo (practice) competency/proficiency La. Vigna et al

Causes of challenging behaviour

In most people who have severe learning disability, these behaviours are not premeditated and are not designed purposely to upset, however the emotional response they create in us tends to make us think that the person is deliberately trying to ‘wind us up’ or that they ’are only doing it for attention’. Scope UK

Challenging behaviour: What approach works? The person showing these behaviours is not a ‘problem’ to be fixed, or someone doing something wrong that needs to be sorted, but that the behaviour is a sign that something isn’t working. It shows that there is some need being unfulfilled, or a problem with communication. Scope UK

In essence it is that there is something going wrong that needs to be addressed, not that there is a person doing something wrong who needs to be stopped. Scope UK

Underlying causes of challenging behaviour for people who have an intellectual disability Behaviours of frustration with communication Behaviours of feeling out of control Behaviours of boredom Behaviours of anxiety Behaviours of being overwhelmed Behaviours of not understanding Behaviours of being unwell Behaviours of pain Extending Dr Paul Ramcharan’s research

To providing support to people with an intellectual disability that achieves personal outcomes all levels of the system need to know:

Institutional care and ‘special units’ are associated with worse outcomes Grouping people with challenging behaviour in staffed housing associated with worse outcomes Better outcomes in individually-tailored smallscale placement where staff specially trained and led No cost difference between these options; poor quality care cheaper Mansell

The number of people supported on one site does matter? The research is in: As the number of people supported in an accommodation setting rise then the amount of privacy, personal possessions, self determination, personal relationships, physical activity and engagement in your own life diminish. One thing does increase however – the amount of medication you take. Epstein-Frisch et al 2006

Choosing Community Living Before the move, 83% of the parents reported satisfaction with the institution. After the move, 87% were satisfied with the community. CLOSE THE DOORS CAMPAIGN FOR FREEDOM PACKET

If Staff Practice ‘Institutional Care’ If staff provide ‘institutional care’ then the amount of privacy, personal possessions, self determination, personal relationships, physical activity and engagement in your own life diminish.

The question is will we in Australia tolerate the placement of people in inappropriate settings with inappropriate support? Or is the NDIA an opportunity for all of us to do what is reasonable and necessary

Uncertainty to Interest (locating evidenced based practice frameworks, begin to talk about benefits, developing awareness)

Interest to Influence (developing competence, rely on experts/ consultants to train and motivate staff, look for and reward examples of good practice, relies on other’s evidence base, becomes part of the dialogue of the organisation)

Influence to Implementation and Ownership (developing confidence and sustainability, able to train our own new staff and run training courses for others, practice coaching and feedback, focus on those staff that are not implementing chosen frameworks of practice, review and evaluate own outcomes – developing own practice evidence)