Ageing in Place in Group Homes: An Australian Context
Tal Araten-Bergman and Christine Bigby
Introduction
The past several decades have seen dramatic increases in life expectancy of people with intellectual disabilities. Thanks to medical advances and socioeconomic developments, many of this group now live and age in the community at rates similar to the general population (Coppus, 2013; Strydom, Dodd, Uchendu, & Wilson, 2020). However, there is still disparity between mortality rates of people with intellectual disabilities and the general population, with some figures suggesting people with intellectual disabilities die an average ot 20 years earlier than the general population (O’Leary, Cooper, & Hughes-McCormack, 2018). Nevertheless, people ageing with intellectual disabilities make up a small but significant proportion of all disability service users in most countries with advanced economies. For example, in Australia, 7.6% (11,306) of all adult participants with intellectual disabilities (53,328) in the National Disability Insurance Scheme (NDIS) are aged 55 years and older (NDIS, 2019).
Ageing of people with intellectual disabilities emerged as a pressing social phenomenon in the 1980s, when researchers and advocacy groups began calling on public policy and service providers to adapt to the age associated support needs of this population (Anderson, Lakin, Bruininks, & Hill, 1987; Bigby, 2000, 2002, 2008; Janicki & MacEarchron, 1984; Monahan & Wolf, 2014). Researchers explored the unique age associated health and social support needs of people with intellectual disabilities, and proposed policy aims, funding mechanisms and an array of services necessary to address such needs. However, since these issues were first raised, the context of debates about policy, funding and services for older people with intellectual disabilities has shifted significantly, reflecting changing conceptualisations ot both ageing and disability, public policy trends and philosophies ot service delivery and practice.
Since the 1980s, theoretical conceptualisations of ageing and disability have evolved from individual models focusing on deficit and pathology to a broader social gaze that embraces a socio- ecological framework focused on person/environment fit (Agmon, Sa’ar, & Araten-Bergman, 2016). This framework now understands that quality of life is determined by physical, mental and genetic dispositions combined with living circumstances, health status, lifestyle and formal and informal support networks across the life course, and the availability of supports to meet needs (Kattari, Lavery, & Hasche, 2017).
In parallel, public policy in Australia has embraced a rights-based approach that puts greater emphasis on community living, consumer choice and quality ot life as desirable outcomes. These trends have been manifested by the ratification of the Convention on the Rights of Persons with Disabilities (UNCRPD), the development of the National Disability Strategy 2010—2020, and the adoption of Active Ageing as a guiding principle for age care policy (World Health Organisation, 2002, 2015).
Taken together, Australian ageing and disability policies now stress expectations that all citizens, regardless of their age or impairment, should have equal opportunities for healthy and active ageing, and access to support necessary to achieve this goal (Bigby, 2008). However, despite such clear aims, progress has been slow in responding to support needs ot ageing people with intellectual disabilities. The introduction of the ND1S in 2013 reformed the entire disability service system by ceasing block, or program-based, funding of services and introducing individualised funding packages (Commonwealth Government of Australia, 2013). The NDIS provides the logical point from which to explore policy and service system issues for meeting the needs of older people with intellectual disabilities. The focus of this chapter is on ageing in place of those who live in shared supported disability accommodation, or small group homes as they are referred to in Australia. People with intellectual disabilities are a very large proportion ot the 17,000 people who live in groups homes and many ot them are in their 50s and 60s. This chapter reviews knowledge about the needs of this group. First, it reflects back on progress made and obstacles encountered to ageing in place prior to the NDIS. Then it looks forward to explore the potential of the NDIS to more effectively enable ageing in place, while also exploring some early indicators of the extent to which this is already being realised.
