The World Health Organisation (WHO) world disability report (2011) notes that ‘responses to disabilities have changed since the 1970’s prompted largely by the self organisation of people with disabilities and the growing tendency to see disability as a human rights issue. Historically people with a disability have largely been provided for through solutions that segregate them’ (pg 3). During the latter part of the 20th century stronger emphasis was placed on personal rights, desired personal outcome, and an awareness of the impact of discrimination and marginalization of people with disabilities (Schalock 2004).
The United Nations has played an important role in raising awareness about the rights of people with disabilities. The Declaration of Rights of Disabled Persons was introduced in 1974, 1981 was declared The International Year of Disabled Persons and 1982-1993 the Decade of Disabled Persons. However, it was the United Nations ‘Convention on the Rights of Persons with Disabilities’ (2006) that cemented the most extensive recognition of the human rights of persons with disabilities. Article 19 of the ‘Convention’ recognizes ‘the equal rights of all person with disabilities to live in the community, with choices equal to others’, including ‘the opportunity to choose their place of residence and where and with whom they live on an equal basis with others’, ‘have access to a range of in-home, residential and other community support services necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’.
The 111 countries who ratified this convention (including Australia in 2008) must promote, protect and uphold these rights. This includes consulting with and involving people with a disability in developing and implementing legislation and policies and in decision making process that concern them. The CRPD has significant implication for disability policy and service provision. Both international and national Governments recognize that people with a disability must be partners in service delivery and have a greater degree of control over the services they receive (ADHC 2012).
The Convention on the Rights of Persons with Disabilities builds on the principles of Normalization and Social Role Valorization that influenced disability policy and service provision throughout North America, the UK, Europe and Australasia. Introduced in the late 1960’s Wolfensbergers principle of normalization promoted making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society including housing, schooling, employment, exercise, recreation and freedom of choice (1972).
The basic premise of Social Role Valorization developed in the 1970/80’s is that people are more likely to experience the ‘good things in life’ available to a society if they hold valued social roles, than if they do not (Wolfensberger et al 1996). Social Role Valorization was about enabling, establishing, enhancing, maintaining and defending valued social roles (Thomas & Wolfensberger 1999). Enhancing the perceived value of the social roles of a person/group is called social role valorization.
The good things in life are universal and include being treated with dignity, respect, acceptance; a sense of belonging; an education; developing and exercising one’s capacities; a voice in the affairs of your community and society; opportunities to participate; a decent material standard of living; a normal place to live; and opportunities for work and self support (Wolfensberger et al 1996).
The principles of Normalisation and Social Role Valorization and the ‘disability movement’ are attributed to influencing policy changes and changing the way services for people with disabilities were provided in Australia, in particular the ‘deinstitutionalisation’ of people with intellectual disabilities. In 1983, the NSW Government inquiry into health services for the psychiatrically ill and intellectually disabled, known as The Richmond Report recommended dedicated mental hospitals be largely closed down and people be supported in the community. As a result, funding was re-directed into community-based support. In the early 1980s, largely due to pressure from the community, the Australian Government began a review of services for people with disabilities, leading to the creation of the Disability Services Act 1986 (Cwlth).
The key objective of the Act 1986 was to de-institutionalise segregated services, increase the range of service options and to include people with disability in the wider community life. This resulted in the first coordinated approach to assisting people with a disability gain and maintain employment in the open labour market. Before 1986, the primary employment option was ‘sheltered’ employment, now known as Australian Disability Enterprises. The 12 Commonwealth Disability Services Standards (1993) outlined Government expectations of service quality and outcomes for Disability Employment Services Programs.
The NSW Disability Services Act 1993 (updated 1995) outlined how services for people with disabilities should be provided by organisations funded by the NSW government. The NSW Disability Services Act saw the focus of service shifting from institutional care for people with disabilities, to support within a home environment in the community. The NSW Disability Services Standards (DSS) introduced to support the implementation of the NSW Disability Services Act outlined best practice approaches to providing services to people with disabilities. The NSW government commenced a revision of the Disability Services Standards in 2011 to reflect contemporary directions in disability services including person centred and lifespan approaches and choice, portability and flexibility in funding and supports.
Australia is working towards a new National Disability Quality framework and National Standards for Disability Services to replace the Federal and State Disability Service Standards.
In 2011, the Productivity Commission report into disability supports in Australia for the Federal Government was released. The ‘commission’ investigated the unmet needs of people with disability, their families and carers across Australia and disability support systems overseas. The report titled ‘Disability Care and Support’ recommended a National Disability Insurance Scheme (NDIS) to fund appropriate levels of care and support for people with a disability.
The NDIS represents the most profound change in Australian disability history, replacing all current state and territory disability systems. NDIS will fund the ‘unmet need’ that exists in every state and territory and revolutionize the way people with a disability, their families and carers are supported. People with a disability, their family and carers have more control over the services and supports they receive, and the flexibility to choose from a wider range of options and providers. The Federal Government committed to a trial of the NDIS in mid 2013 in South Australia, Tasmania, the ACT, the Barwon Area in Victoria and Hunter region in NSW. However, the full scheme is not guaranteed by any political party.
The Council of Australian Governments (COAG) agreed on the need for major reform of disability services in Australia through the NDIS. The National Disability Strategy 2011 agreed to by COAG is a 10 year plan with 6 priority areas to improve the lives of people with disabilities and their families and carers, including inclusive and accessible communities; rights protection, justice and legislation; economic security; personal and community support; learning and skills; and heath and wellbeing.
The impact of The Convention on the Rights of Persons with Disabilities (2006) on disability policy and service provision will continue to be far reaching. Internationally (e.g. Canada, Scandinavia, the US, the United Kingdom) and nationally the move away from funding traditional disability support services towards individualised, self directed models has become increasingly widespread (Fronek, et al 2010). These citizenship and inclusion models are known by many names including ‘person-centred’, ‘self directed support’, ‘self directed services’ and ‘individualised funding’ is a key component.
These models are based on the principle that if people with a disability are to participate and contribute as equal citizens, they and their family and carers must have choice and control over the funding and support they need to go about their daily lives (Glynn, et al 2008). These ‘self directed’ and individual funding approaches are based on an acknowledgement that people with disabilities, their families and carers are in the best position to define and determine how their own needs are met (Williamson 2006). Connecting people with their immediate support network (family, friends, others) and their local community is a key priority.
In recent years, the NSW Disability service system has moved towards the introduction of more flexible models of support and choice with the trialling of self managed models and individualized funding. Programs with person centred elements include Transition to Work, Community Participation, Life Choices and Active Ageing, Attendant Care and Family and Children’s Programs.
1. The World Health Organisation (World Disability Report (2011)
2. Schalock, R.L (2004). The emerging disability paradigm and its implications for policy and practice. Journal of Disability Policy Studies (cited in Interaction Volume 24#2 Issue 2010 – Evaluation od Self Directed Leadership (Part 1: Literature Review) AIIDD (Australian Institute on Intellectual and Development Disabilities).
3. Declaration of Rights of Disabled Persons (UN) 1974
4. The International Year of Disabled Persons (UN) 1981
5. Decade of Disabled Persons (UN) 1982-1993
6. Convention on the Rights of Persons with Disabilities (UN) 2006
7. Living Life My Way. Putting people with a disability at the centre of decision making about their supports in NSW (2012 NSW Government). Appendix B: International and National Reform Directions.
8. Wolfensberger, W (1972). The principle of normalisation in human services. Toronto. National Institute on Mental Retardation. In Osburn, J. (1998). An Overview of Social Role Valorization Theory. The International Social Role Valorization Journal, 3(1), 7-12.
9. Wolfensberger, W., Thomas, S., Caruso, G. (1996). Some of the universal ‘good things of life’ which the implementation of social role valorisation can be expected to make more accessible to devalued people. The International Social Role Valorisation Journal 292), 12-14. In Osburn, J. (1998). An Overview of Social Role Valorization Theory. The International Social Role Valorization Journal, 3(1), 7-12.
10. Wolfensberger, W., & Thomas, S. (1999) in Flynn, R.J., & Lemay, R. (1999). Past, present, and future contributions of normalization and Social Role Valorization to the social integration and valued social participation of persons who are disabled or otherwise at risk of social devaluation. In Flynn, R.J., & Lemay, R. (Eds.), A Quarter-Century of Normalization and Social Role Valorization. Ottawa: University of Ottawa Press.
11. The Richmond Report (1983)
12. The Disability Services Act (1986) (Cwlth)
13. The Disability Services Standards (1993) (Cwlth)
14. The NSW Disability Services Act (1993)(updated 1995)
15. The NSW Disability Services Standards (1993)
16. National Quality Framework for Disability Services – www.dhs.vic.gov.au
17. Productivity Commission 2011 report to the Australian Government ‘Disability Care and Support’
18. NDIS federal government website www.ndis.gov.au
19. 2011 National Disability Strategy
20. Fronek, P., Chenoweth. L., Clements, N. (2010) Evaluation of Self Directed Leadership (Part 1: Literature Review). AIIDD (Australian Institute on Intellectual and Development Disabilities). Interaction (Volume 24#2 Issue 2010). AIIDD (Australian Institute on Intellectual and Development Disabilities).
21. Glynn, M., Beresford, P., Bewley, C., Branfield, F., Butt, J., Croft, S., Pitt, K.D., Fleming, J., Flynn, R., Parmore, C., Postle, K., & Turner, M. (2008). Person-centred Support: What Services Users and Practitioners Say. York: Joseph Rowntree Foundation (cited in Interaction Volume 24#2 Issue 2010 – Evaluation of Self Directed Leadership (Part 1: Literature Review). AIIDD (Australian Institute on Intellectual and Development Disabilities).
22. Williamson, M. (2006). Innovative Accommodation Support for Western Australians with a Disability. Perth: ACROD WA (cited in Interaction Volume 24#2 Issue 2010 – Evaluation of Self Directed Leadership (Part 1: Literature Review). AIIDD (Australian Institute on Intellectual and Development Disabilities).
23. Stronger Together 2 – A New Direction for disability services in NSW (2006 – 2016)
24. Living Life My Way. Putting people with a disability at the centre of decision making about their supports in NSW (2012 NSW Government).