Perspectives on intellectual disability : a Latrobe Valley focus.

In Australia, disability reforms in policy and practice have undergone significant change since World War II. The nature and impact of these changes have consequences for the lives of people with intellectual disabilities and their families. While significant gains have been made in the quality, relevance, function and place of services, many deficiencies persist. The move towards community based supports and services provide the opportunity for people with intellectual disabilities to live and participate in the community. While policy, service, and ideological changes have been significant, their implementation and the impact on the lives of people with disabilities still show many disparities. Often people with an intellectual disability remain apart from, rather than a part of the community. This study explores how service provision, has shaped and influenced the lives of people with an intellectual disability and their families. The time period under review is between 1950 to early 2010. This study is set in the Latrobe Valley, Victoria, Australia; a region which has undergone considerable social, economic and environmental change. The rapid growth of power generation industries in the 1950s brought great economic growth and prosperity to the region. However, 50 years on, the Latrobe Valley is a shadow of its former self. Through in-depth interviews with people with intellectual disabilities, families, and service providers living and/or working in the Latrobe Valley, and the use of biographies and documentary sources, we gain insight and a deeper understanding into lives lived by the experience of disability. Findings of the study reveal a more complex perspective on disability, policies, and service delivery, and challenge the passive role people with disabilities and their families have often been assigned. Service provision was integral in the lives of people with intellectual disabilities, even in situations where this did not meet their expectations. They relied upon services to support their skill development and the achievement of personal goals, and aspirations. Parents wanted their children to experience ‘an ordinary life’, and sought the support of services to help them in their parenting role, including planning for the future. However, families experienced the service system as unresponsive, uncaring, self-serving, regimented, and inflexible to their needs and those of their children. Families were prepared to accept inflexible and standardised services, where service imperatives dominated over service-users, in the fear that refusing a service would result in no service. People working in services experienced the service system as complex, highly structured and process driven, which disadvantaged service users and their families. They were concerned that the needs of people with disabilities and their families were not being met, and if they were it was just luck. The concerns raised by service providers in meeting the needs of people with intellectual disabilities mirrored those expressed by families. Both families and service providers felt disempowered and experienced cycles of ‘hope and gloom’. The findings of this study support the view that service and professional definitions of need dominate, and the provision of services are system¬-led, rather than needs-led and often fail to meet the identified needs of people with disabilities and their families. How services engage with the complexity of the service system impacts on their capacity to promote the abilities and contributions of people with intellectual disabilities and their families