Acknowledgement to the Cerebral Palsy League for their continued support

 ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’ The United Nations Convention on the Rights of Persons with Disabilities (2006)

13% completed bachelor degree 9% unemployed 61% difficultly access ing activities Educational Educational Social Social Cultural Cultural Economic Economic Political life Political life ↑ Cost of living Among poorest

Area where barriers experiencedPercentage of submissions Social inclusion and community participation 56 Disability services56 Rights, justice and legislation39 Income support and the cost of disability 37 Employment34 Accommodation32 Families and carers30 Education29 Transport29 Health and wellbeing29 Built environment27 Disability services—workforce issues21 Aids, equipment and assistive technologies 20 National People with Disabilities and Carer Council (2009)

From an Organisational perspective  Disability services being unable to cater to high demand  Funding shortfalls  Lack of resources to go around  Crises driven funding  Over regulation of systems

From a personal perspective  Insufficient funding  Difficult to navigate the system  Assessment and eligibility requirements are complex and often involve one having to ‘prove’ your disability  The system is driven by administrative requirements and not the needs of the person/family  There is a lack of trust, flexibility, choice and control Australian Federation of Disability Organisations, 2009

 Organisational and Personal barriers  Prioritisation relates to accountability and fiscal management of time and resources  Cost cutting  Focus on deficits for assessment and intervention

So how do we start to make the system more responsive to the rights and needs of people with disabilities?

 ‘Direct funding ‘self-managed care’, ‘individualised budgets’, ‘direct payments’  Basic principles of self-determination  Advocates for increased quality of life and equal citizenship  Shows congruency with the UN Convention on the Rights of Persons with Disabilities, Disability Service Act and AASW Code of Ethics Community Resource Unit; Williams, 2007; World Institute on Disability, 2009

Principle of Self-determination Freedom The thinking that led to Self-directed funding - Desire for individually tailored services, matched to needs - Need for a greater degree of flexibility (i.e. to be able to adjust services to match changing needs) Uditsky Self-directed funding in action - ‘People living with a disability have the option of using public funds to build a life rather than have purchased for them a predetermined program’ Williams - Resources are determined based on an individual plan - Meeting personal goals and needs in a flexible manner - Choice and flexibility is available

Principle of Self-determination Authority The Thinking that led to Self-Directed funding - Individuals desire to have more control over their lives - To have a say in how they want to live and how support will be provided Self-directed funding in action - ‘Where people with a disability really do carry meaningful control over a specific sum of public money’ Williams - Planning is directed by the person – or with the help of family, or a nominated support person as needed - The ability to hire own staff, or use service providers by choice Uditsky

Principle of Self-determination Support The Thinking that led to Self-Directed funding - Support is available when it is needed and provided in a way specified by the person or family Self-directed funding in action - ‘With emphasis on both formal and informal support networks - The expectation that the support arrangements include participating in the rich associational life of the person’s community’ Williams - Support is to be person and/or family centred

Principle of Self-determination Responsibility The Thinking that led to Self- Directed funding - The opportunity to participate as equal citizens - Desire for a ‘greater degree of inclusion, particularly for people who had significant disabilities or challenges’ Uditsky Self-directed funding in action - ‘Where people living with disability are expected to assume responsibility for not being passive recipients of support’…. ‘but for also contributing something to their communities, like any other citizen’ Williams; Victorian Government - Mutual reciprocity and a socially valued role can then be achieved.

 Introduced the self-directed concept in the United Kingdom  Led to a new model in the Social Care System  Realised the lack of citizenship, choice and control for people with disabilities  Collaborated with individuals, families and professionals  Informed policy In Control, 2009

Advantages Limitations In Control Study  47% of people said their general health and well-being was improved  77% said that their quality of life had improved  63% of people said they have improved participation in the community  72% said that they felt they had more choice and control  59% felt an increased sense of personal dignity Hatton & Waters, 2008 The Commission for Social Care Inspection (CSCI) consultation  Increased amounts of paperwork for families  Lack of information given about the scheme and how to take it up  Councils’ (services) not taking on this approach due to a reluctance to change  Policies that were still rigid in application  Service workers also reported a lack of awareness and knowledge about the scheme  Staffing issues owing to recruitment and training CSCI, 2004

 Promoting direct payments in a variety of forms  Using experienced task forces (which included current users of the scheme, advocacy workers, independent agencies to support with administrative work, experienced practitioners and legal workers)  Defined employment services, streamlined policies and administrative services so they are less restrictive and complicated CSCI 2004

 Provide more intensive support to the individual by way of: - information - advice - linking into networks - performing community development - inclusion practices Wardlaw, 2008

None of us want to look back and say that we lived a life half lived……