An Australian study into the transition arrangements for ageing people with intellectual disabilities was carried out by the authors across two separately funded organizations. The first, Greenacres Disability Services, is an organization that provides training and support services to people with disabilities. It is recognized nationally for providing innovative work-based programmes. The second, IRT, is one of Australias largest community-based, retirement living and aged care providers. Both organizations operate under different funding models and it is only through crisis situations that people with intellectual disabilities from organizations like Greenacres are able to move across to aged care prior to meeting the appropriate age criteria. Aged care services are targeted at people aged over 65 years who are frail/aged, and who have limitations in performing core activities. Increasingly services are provided within the persons family home through a range of community packages, and clients only transition into a residential facility when they are much older, and are too frail (and their care needs too high) to access services at home. Aged care providers are funded to accommodate some special needs groups aged 50 years and older (including Aboriginal people and Torres Straight Islanders); however, people with intellectual disability are not identified as having special needs under the Aged Care Act 1997. Aged care assessors are required to assess people with intellectual disability in the same way as they assess the general ageing community, and find it difficult with current assessment tools to differentiate whether behaviours and limits on core activities are disability- or age-related. This is significant, as an increase in challenging behaviours in people with disability may be age-related but they are often assessed as ineligible for services due to having intellectual disability, whereas members of the general public with similar challenging behaviours(dementia-related) would be eligible for aged care services. If the outcome (the behaviour) is a criterion for access into aged care, should the cause of the behaviour be a deciding factor at all?

IRT staff members report a slow decline of entry into low-care accommodation as the ageing population stay in their own homes longer. When care needs increase so that they are no longer able to remain in their homes, high-care accommodation is accessed through an aged care assessment, with over 50 per cent of these being conducted on people aged between 80 and 89 years. For parents and carers of people with an intellectual disability, staying at home longer means extending their caring role at a time when their own ageing care needs are increasing, and they also face the concern of how to ensure that care and social supports are maintained when they are no longer around. For example, Greenacres staff highlighted an example of how people with intellectual disabilities can experience social isolation within residential aged care. They gave the example of a client who moved into a lifestyle aged care community with her ageing mother, but when her mum passed away some of the residents expected her to move on. She became isolated without the social support of her mum; other residents began to avoid her and she was excluded from community activities.

People with intellectual disability often show the signs of ageing earlier than the general population and may require access to aged care services at an earlier chronological age. They can also have severe limitations to core activities, but may not meet the frail/aged criteria required by aged care assessors. This group also often withdraws from supported employment services due to early ageing once age-related decline reduces a persons capacity to continue working (beginning mid-to-late-40s or early-to-mid-50s). This group is transitioning out of disability services (including supported employment) but not often eligible to access aged care services. For this group, access to aged care is usually therefore as a result of a crisis occurring and is generally difficult to manage.

The problem of collaborative change

Local service providers regard the interface between aged care and disability services as an opportunity for partnerships with combined funding; however policy-makers see the sectors as mutually exclusive and the interface as creating a risk of double dipping (Fyffe et al., 2006). However, staff interviewed at both Greenacres and IRT highlight the importance of collaboration in order to ensure a smooth transition for clients and to improve well-being and social support. For example, at Greenacres the two key concerns for an ageing person with intellectual disability entering aged care services were seen to centre on: the need for a smooth, well-prepared transition (planned in advance) with support from carers, and the need for communication and social supports both during and after the transition. When asked to rank the importance of the transition phase, staff responses ranged from very, very important to vital and noted that the transition can be the difference between success and failure for people accessing aged care services. In reality, there is often very little or no time for the transition, with access to residential aged care most frequently the result of crises. When the primary carer dies, decisions about placement for a person with intellectual disability are being made by families during their period of grief, and their focus is on finding a safe and secure environment for their family member with disabilities to provide the family with peace of mind.

Interviews with IRT staff showed that they shared the same concerns. When asked about the importance of transition, staff felt they may need extra support services (such as a mental health worker) when the placement was due to a crisis: When a parent dies and their son or daughter is placed into residential aged care, they are not just grieving for their carer, but also for their home. Thus, ongoing respite care was considered a positive strategy to transition people with intellectual disability into aged care. Respite care provides the aged care provider with an opportunity to develop a relationship with the person with intellectual disability, and to develop a trust with their carer: Parents need to be able to trust us to look after their son or daughter, particularly if they have never accessed services before.

Despite the barriers that separated aged and disability services, IRT and Greenacres were committed to developing a solution for ageing people with disability, and formed the Pathways Project Steering Committee. They invited the CEOs of two additional local disability organizations to join the steering committee and together they began to develop a plan to build a community to support ageing people with disability within a mainstream seniors lifestyle (aged care) setting.

Working together, they developed a master plan for a purpose-built community including one and two bedroom villas, a central community centre and on-site respite accommodation. The concept was developed to address the need for a well-planned, smooth transition into aged care for people ageing with disability. The plan involved building a community where ageing people with intellectual disability could initially reside with their ageing carers, then remain living within that supportive neighbourhood after their parents have passed away. The on-site respite accommodation would provide an opportunity for families to develop trust in the partner organizations before making a decision on whether they should move into the community permanently.

The plan included three key features:

Eligibility for accommodation eligibility to include evidence of increasing signs of ageing and the effect that is having on current living arrangements.

Tenancy supporting the ageing person with disability to be the primary tenant (person responsible) in tenancy agreements.

Access to services ensuring that the model allows for continued access to disability services for primary tenants (not currently possible for people transitioning into residential aged care).

The Pathways Project committee were unsuccessful in seeking funding for the development from traditional aged and disability funding sources due to the innovative nature of the development. The deliberate decision to exclude chronological age from the eligibility criteria meant that the model did not fit within either sector, which required the partner organizations to transform their thinking and approach to funding the project. Protecting and maintaining the integrity of the Pathways model became a key driver in the collaborative effort by each of the partner organizations, and drove greater commitment to agreed roles and responsibilities. A heightened sense of urgency arose from discussions about families at risk of separation and known to the partner organizations. This time-sensitive context was a trigger for change in the way that the organizations worked together. Close collaboration in a common agenda for change was successful in enabling the Pathways Project Steering Committee to secure $2.9 million in funding. These monies supported the building of accommodation for a community aligned with the Pathways model. Families began moving into the community in early 2016. The first of its kind in Australia, the Pathways Project (now known as Kemira at IRT William Beach Gardens) is attracting international interest as an innovative model that meets the needs of ageing people with intellectual disability and their carers. Despite also being a model that supports the goals of the National Disability Insurance Scheme (NDIS), the greatest social reform in Australias recent history, Kemira remains a regionally focused, single Pilot Project that is difficult to replicate in other regions of Australia, the United Kingdom (UK) and America due to ongoing challenges from existing regulations and funding barriers (see, for example, Heller, 2017).

The problem of transitioning into aged care for people with intellectual disabilities remains a wicked (difficult to resolve) issue that requires resolution by the involvement of multiple stakeholders. From our research, the two practical concerns for an ageing person with intellectual disability entering aged care services are the need for a smooth, well-prepared transition (planned in advance) with support from carers, and the need for communication and good social supports both during and after the transition. There is growing recognition of the achievements of the IRT Kemira Project (see Savage, 2017), for example, in 2016 the project won the Australian Business Award for Community Contribution (Australian Business Awards, 2016), and in 2017 it won Innovation of the Year for Service Implementation at the Fifth Asia Pacific Eldercare Innovation (APEI) Award held in Singapore in April 2017 (APEI, 2017). The initiatives implemented provide exemplars of innovative solutions in helping to keep families together that would otherwise be apart (Wachsmuth, 2016). The case also highlights the importance of communication in establishing social networks and building social capital in the pursuit of social innovations.

Questions

How would you set about trying to manage change? Should attention be placed on political lobbying and strategies for policy change? Will the external drivers for change with growing demand for more integrative services force governments to take action? Should change be initiated across the relevant organizations and how could this be accomplished and managed? These and other questions should be considered in individual and group discussion on the theory and practice of managing complex change.

Reflect on the following three potential strategies for managing successful transition: providing disability day service programmes within an aged care setting; providing periods of respite to build trusting relationships; and providing cluster residential options to encourage socialization for permanent residential aged care placements. What do you see as some of the advantages and disadvantages of these strategies and are there other options you can identify from your reading of the case?