Mary Nolan

Quality

Chris and co - journey

1993-94 at farm before cricket

Chris and Greg admission to court 1991

1995 at farm

1995 Hanoi

May 1996 Singapore

1st visit home 1997

Late 1997 – sick again St Vincent’s

How can we work better together to make a difference for YPINH?

• 2001 Inability Possability Inc (YPINH with ABI)

• 2001 YPINH Consortium• 2002 Nat YPINH Summit• 2002 Nat YPINH Conference

How can we work better together for Chris?

• 2004 NH closing – still no place for Chris• What does Chris want? and how do we

get it?• June 2004 What does Chris want

(WDCW) group 18 family and friends – meets monthly

Neil Young – about 2005

St Patrick’s College class 1985 reunion

2005

Farm on wheel chair trailer

Chris with carers/nurses 2006

Meredith Music festival

Meredith Music Festival – carers, friends, therapist

Ministerial announcement Alphington March 2007

WDCW Socio-medical Model of Carebook launch Dec 2008

Systemic Chasms for Chris and us

• Commonwealth and State re YPINH – start + break through with COAG 2006

• Attitudes - magnified for Chris non verbal. How do you know he is there?

• Disability and Health, (medical, aged care) philosophically and practically greater than Commonwealth and State Minister. (WHO ICF 2001) WDCW socio-medical model

Attitudes to YP with ABI and non verbal

• How do you know he is there? – Photos - does Chris look as if he is there?

• Often treated as vegetative - talked over, about, presumptions made – this is what he wants – to suit carer!

• Believing a person is ‘there’ has profound consequences

• ‘The Diving Bell and The Butterfly’ film essential viewing for anyone interested

Disability and Health Chasm• “Greater than Commonwealth and State

philosophically and practically” Minister Jennings 2005-06

• World Health Organisation International Classification of Functioning, Disability and Health 2001 (WHO ICF 2001)

Disability and Health Chasm• On all levels – DHS, sector, medical,

organisational, workers, allied health, managers, workplace agreements and so on

• Language – “gobbly gook” language and red tape endemic in society anyway

• Disability/Health e.g. “care’’ different meanings in disability and health. Imagine what it is like for families – how that excludes and confuses!

What about Chris and others with narrow margins of health and who are non verbal

who need nursing and therapy care to survive?

What works?

• Basic need of every human person to feel safe and to feel valued (loved) – not just told they are safe, valued.

• Partnership in Care – philosophy and practice – and all that means on every level enables people from different places, disciplines, philosophies to come together

• Listening is critical – to the verbal and non verbal - and checking what one has heard

• But not everyone wants to work that way, so some not suited

Guiding Principles of partnership in care and support

1. The person with ABI is an interdependent social being participating in society (as we all are – we need others)

2. Communication is central to participation as a social being and is vital between all those involved in the model of care

3. An integrated approach to care and rehabilitation is required with ongoing learning

4. Rehabilitation takes places in an environment that is both long term and unpredictable, requiring continuity of care and openness to change

5. Rehabilitation requires trusting relationships and an enriched flexible environment

• Partnership changes us from victims, recipients, consumers to equal partners and is enabling of dignity and quality for all

• With Chris, I am part of all decision making groups and teams and evaluations

• Access to all information on all levels – clinical, financial, social, care plans, etc

Working together organisationally and personally is rewarding for all.

Chris, mate Craig and his son Daniel at Chris Nolan Academic Awards St Pat’s 2008