Background
On a positive note, many people with disabilities are enjoying a longer life-span and overall better health. However, for those who are cared for by parents or other informal carers, this often means they will outlive their carer, or live to an age where their carer is no longer able to provide the level of care required. There is relatively little information or data (either Australian or international) that clearly identifies what the needs and priorities of this group are in relation to succession planning.
Understandably, many parents and carers are concerned about what will happen when they are no longer able to provide care. Evidence is emerging in Australia and other countries that indicates few parents and carers have made comprehensive plans for future care, accommodation and support, and that they are reluctant to engage in such planning2(Opens in a new tab/window). The reasons for this reluctance and/or lack of planning are varied. Some carers report that 'coping with the present' is difficult enough, others believe they are going to live longer than their children, and a number of carers experience frustration and confusion about the lack of information and services when trying to undertake planning3(Opens in a new tab/window), whereas others are willing to contribute financially but don't know how to start to plan, or are discouraged by complexities in the social security and taxation systems.
1 Department of Families, Community Services and Indigenous Affairs, Succession Planning for Carers, Discussion Paper, November 2006.
2 See Bigby, C "Transferring Responsibility: the Nature and Effectiveness of Parental Planning for the Future of Adults with Intellectual Disability who Remains at Home until Mid-life". Australian Society for the Study of Intellectual Disability Inc, 1996 p296. This reluctance is also noted in other countries, see O'Grady, Reilly and Conliffe "Facilitating future planning for ageing adults with intellectual disabilities: using a planning tool that incorporates quality of life domains" Journal of Gerontological Social Work, Vol 37 (3/4) 2002, p105.
3 Keyzer, Carney and Tait "I hope he dies before me" caring for ageing children with intellectual disabilities and against the odds: parents with intellectual disability". A review of legal service and options for people who lack competency and their carers, report to the disability services sub-committee, August 1997, p 36 - 37.