Services For Adults With Autism Brian McClean Brothers Of Charity Roscommon

What is it about the classroom that prepares us for life?

What’s important ? I’ll say it in the most straight-forward way I can: most of the people supported by our human services organisations are lonely. Profoundly lonely. And most of what we do in human services is secondary to helping people form and maintain meaningful relationships.

There. I’ve said it. The cat is out of the bag. I don’t think our industry —and that’s what it is, an industry — is paying enough attention to the impact of loneliness in the lives of people who experience disabilities.

I’ll go further. I think most (though not all) of our paperwork, rules, regulations, professional standards, buildings, cell phones, pagers, computer systems, medicines, expertise, science — most (not all) of it is a waste of time and resources. Most (not all) is a physical manifestation of our inability to come to grips with the central issue in peoples’ lives — loneliness. David Pitonyak, Toolbox for Change

Social Role Valorisation Raise consciousness Challenge perceptions Provide valued social roles Promote social inclusion Wolf Wolfensburger

Challenging Behaviour Is Not The Problem......But A Symptom Of The Problem

FIVE STEPS IN BEHAVIOUR SUPPORT Low Arousal Rapport Building Predictability Communication Incentives Aidan Brendan Cormac Darragh Number of Incidents ABB+CB+C B+C+D+E B+C+D+E B+C+DB+C+D B+C+D+E+F B+C+D+E+F A = Baseline B = Low Arousal C = Rapport Building D = Visual Sequencing E = Escape Communication Training F = Differential Reinforcement Weeks An Evaluation of an Intervention Sequence Outline in Positive Behaviour Support for People with Autism and Severe Escape-Motivated Challenging Behaviour McClean and Grey, 2012 Journal of Intellectual and Developmental Disabilities

A Sense Of Home Shelter Hearth Heart Privacy Identity Abode Paradise

Looking for a change (n = 46)

Vision based planning Every person should have a vision statement of what is Important to him or her… Important for him or her… And a circle of support able to speak from a position of love and concern

The life of my choosing (n = 46)

Supported Living Options Supported living Remote supervision Professional family share House mate Adjacent housing

“Dublin in the ‘70s”, by John Caslin “The Job Coach”, Athlone 2005 by John Caslin John, drawing in his own home John’s Organic Garden project. This is an urban garden managed by a member of the local community, which gives employment to five people. The project was established by John and Gerry around their common love of gardening. St Brendan’s Hospital, Grangegorman John at Home John’s Organic Garden

People in family homes or supported living experienced better outcomes: better health and well being greater levels of safety better personal satisfaction more use of community facilities, more friends, greater autonomy even when you control for levels of independence 1. Group Homes Don’t Work

The Cost of Person Centredness Additional cost of vision over Jan 2009 service: €4,654 per person (n = 46) Exclude four people needing new high support services: - €1,158 per person (n = 42) 2. Know Your Individual Costs

Individual Costing Shared byMonthly Hours Annual Costs Day Service 440 €12,480 Residential 355 €17,875 Sunday 310 €6,370 Outreach 30 0 Sleepovers 38 €5,200 Total €41,925 Number of Days in a 28 Period Actual Number of Hours per Period Number of Staff per Period Total Staff Hours Number of People Sharing Staff Allocation Individual Hours Cost per hour for support type Annual = 13 Periods of 28 Days January 2009 – Small group homeMarch 2010 – Supported living Shared byMonthly Hours Annual Costs Day Service 3 53 €16,536 Residential 1 5 €1,625 Sunday Outreach 2 20 €6,240 Sleepovers Total €24,401

3. Not All Services Are Effective Mover (N = 20) Mean Non Mover (N = 22) Mean Fdf1df2Sig Adaptive Behaviour Scales – Support Needs Autonomy Mental Health (HONOS) Adaptive Behaviour Scales – Challenging Behaviour Year of Birth N.S. Acceptability of the Vision Statement Working Alliance Inventory Acceptance of Risk -Taking Additional Cost Of Vision (€56)€10, N.S. Empowerment Instrument N.S. Role Clarity N.S. Standards N.S. Structure N.S. Conflict N.S. Responsibility N.S. Warmth N.S. Ability to express N.S.

79% of the variance is explained Variable Entered into the Equation-2 Log likelihood Cox & Snell R 2 Nagelkerke R 2 Adaptive Behaviour Scales – Support Needs Working Alliance Inventory

4. Form A Working Alliance The extent to which frontline staff and family members –agree about the goals –share a mutual respect and trust –have a common appreciation of the person

The heart of the matter “In the work of change there may be an assumption by the helper that the individual will... adapt to the helper’s idea of overall objectives, goals and tasks. The working alliance is much more dynamic and mutual, in which there is ongoing dialogue, checking and negotiation about objectives, goals and tasks.

The heart of the matter This is not just a superficial understanding and negotiation towards a quick consensus. At a deeper level, the working alliance taps into fundamental dilemmas of human existence, such as the negotiation of one’s most important desires with those of another;...the tension between the need for self – determination and relationship.’’ (Safran & Muran, 2000)