There are over 8,000 children with disabilities in Tasmania who are being cared for by their families yet their experiences are rarely heard. This report documents the daily lives of families with disabled children from across the state who are living on low incomes. It explores the additional disability-related costs they face, their experiences of accessing and using support services and what could be done to improve their situation.
Despite a range of policies, initiatives and services spread across different sectors the research found that the support system for families with disabled children is characterised by fragmentation, under-resourcing and a lack of any overarching comprehensive framework within which to address the issues they face. It means that they have to fight for information about what assistance is available and then fight again to access adequate levels of assistance to help them meet their day-to-day care responsibilities. This in turn means that many families access very little or no support at all from formal services and are struggling to cope. This battle is repeated across the service sectors and includes access to Centrelink benefits, to support in the community like personal care, to respite, to childcare and to aids and equipment.
Many services for children with disabilities are delivered through the education system. Tasmania has adopted the principle of inclusion and has achieved the highest rates of inclusion of children with disabilities in mainstream schooling in Australia. Most people, including parents, were supportive of the idea of inclusion but the research demonstrated that its implementation has been inconsistent so that some families have very good experiences and others negative experiences. The same is true in the health sector and although families were complementary about their experiences of accessing specialist health services they also pointed to gaps. These included shortfalls in what primary health care services can offer, in getting a diagnosis and the way in which diagnoses and medical reports were delivered, in subsidies available to meet some of the financial costs and in the links between acute health and community services.
A particular gap was in getting access to adequate levels of therapy particularly for school aged children and to assistance in dealing with difficult behaviours. These pressures can be particularly acute for families dealing with autism. Nevertheless many families involved in the research had good things to say about aspects of the services they had accessed and the skills of professionals they had encountered along the way. What they particularly valued and which had had a positive impact on their situation was flexibility to meet individual needs, a recognition of the impact of disability on the whole family, financial subsidies to meet additional costs, readily accessible information and one point of contact with services. They voiced an overwhelming need for a pathway through services which could provide support from the point of identification of a disability or developmental delay through to their child’s transition into adulthood and beyond.
This report recommends a number of changes which would greatly improve the situation of families caring for children with disabilities and the quality of their lives.