Professor Christine Bigby, Department of Social Work and Social Policy, LaTrobe University
Bundoora, Victoria.
I write as an academic who has undertaken significant research on aspects of aging with an intellectual disability, social inclusion and the effectiveness of services such as group homes for people with intellectual disability.
I want to raise several issues in relation to age related eligibility criteria for the NDIS contained in the draft legislation.
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Re the exclusion from the scheme of people aged over 65 years with an intellectual disability, or other impairments who are currently using disability support services. The life expectancy of people with intellectual disability has increased significantly in the last two decades and is beginning to approximate that of the general population (Bittles et al., 2002; Bigby, 2004). It is estimated that between 6-12% of people with intellectual disability are aged over 55 years, which indicates that a small proportion of current service users with intellectual disability are aged over 65 years (Bigby, 2004). A high proportion of this group are likely to be living in some form of supported accommodation, primarily group homes which is the home in which they should reasonably expect to be able to age in place in. The current eligibility criteria exclude this group of people from the NDIS – as they are aged over 65 at the time they would apply to the scheme. Evidence suggests many of this group do not require the intensive nursing services of residential aged care and there is no rationale for their exclusion from the NDIS as they are current users of disability services. If this goes ahead, in Victoria it might well result in a forced move to alternative non disability funded accommodation, and significant disruption to their well-being and social networks, as well as their quality of life. I propose the need for a grandfathering clause which will enable the inclusion of all people over 65 years who are already in receipt disability services and would otherwise quality for NDIS.
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The current provisions enable people who are already in the scheme to remain in it if they are over 65 years until they move to residential aged care or ‘are being provided with full time community care’. This suggests that people will be able to choose when or if they should move into the Aged Care system and may remain within the disability system until they require the type of 24 nursing care available in the residential aged care system. This seems to be out of line with the exclusion of people aged over 65 years with a disability who are already in the disability system at the time the scheme is introduced.
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There is suggestion that people who acquire a disability after the age of 65 should be included in the NDIS. I note that the Productivity Commission Reports on Disability Support and Care and the parallel reports on the Aged Care system addressed this issue in some detail. I note that while there is a significant need for to build a bridge between knowledge about aging and disability, so it is used across sectors, rather than siloed within them, in terms of access to superannuation, wealth and home ownership the situation of people who acquire a disability in later life is likely to be very different from people with a lifelong disability whose exclusion from the workforce or relegation to low paid employment will have meant they have not accumulated these economic resource to support their old age.
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Finally, I commend the government on this legislation and the statement of purpose and principles. I note that all of these principles mean that the continued funding and support of large scale congregate care facilities by government or under an NDIS (which seems to be foreshadowed in the bilateral agreement between the CommonweaIth government and
NSW) should not occur, as to do so is contrary to these principles and the large body of research evidence that clearly indicates all people with intellectual disability can be supported to live in dispersed ordinary housing in the community (Mansell & Beadle Brown, 2010), and that large scale congregate care is detrimental to their human rights and individual wellbeing.
Bigby, C. (2004). Aging with a lifelong disability: Policy, program and practice issues for professionals. London: Jessica Kingsley.
Bittles, A., Petterson, B., Sullivan, S., Hussain, R., Glasson, E., & Montgomery, P. (2002). The influence of intellectual disability on life expectancy. Journal of Gerontology: Medical Sciences, 57A(7), M470-M472.
Mansell, J., & Beadle Brown, (2010). Deinstitutionalisation and community living: position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. Journal of jir_1239 104..112 Intellectual Disability Research, 54,2, 104-112