Excerpted from Chapter 6 of Moving On without Parents: Planning, Transitions and Sources of Support for Middle-Aged and Older Adults with Intellectual Disability, by Christine Bigby, B.A. (Hons.), M.SocWk, Ph.D.

Copyright © 2000 by MacLennan & Petty Pty Limited. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

The transition for the majority of adults was managed informally. Although not conclusive, it seems that key person succession plans helped to ensure, where it was necessary, that a member of the adult's informal support network took responsibility for managing their transition from parental care. These plans represented a negotiated commitment of siblings or more distant informal network members to manage the transition and oversee the wellbeing of adults with intellectual disability. They provided a mechanism or the means, in the form of a key person, whereby the transition from parental care could be flexibly managed and arrangements made an appropriate time. This mechanism, typically, compensated for the lack of a detailed residential plan and obviated the need for more detailed plans. It also allowed parents to avoid dealing with or confronting many issues involved in the transition of their adult child from their care.

People nominated in key person succession plans, in addition to their involvement in the transition process, retained an important role in the life of the person with intellectual disability by overseeing their wellbeing. This role is examined in more detail in later chapters. Over the longer term, this continuing role differentiated those nominated in plans from people who had stepped in to manage the transition without having been nominated.

The number of adults with an informal primary carer directly after transition exceeded the 10% expected from the examination of plans in chapter 5. It is also much higher than would be expected from the literature discussed in chapter 2. However, the studies by Prosser and Grant and the theory of task specificity suggest provision of informal care by kin other than parents is not a long-term arrangement because of the high costs incurred by other kin (Grant, Litwak, 1985; Prosser & Moss, 1996). The next chapter examines this issue, analysing the characteristics of kin who provided informal primary care and the length of time they sustained it.

A characteristic of the transition process was the split of the two functions hitherto performed by parents: the provision of primary care and the responsibility for overall wellbeing of the adult with intellectual disability. During the process of transition these functions were often split between a parent and the person nominated in the key succession plan. Later the functions were more commonly split between the key person and a formal service. Many plans have envisaged this split, expecting informal network members to take a management role and formal services to provide direct care. This differentiation of tasks by group was apparent to some extent after transition; responsibility for overall wellbeing of the person with intellectual disability was almost exclusively the domain of informal network members and, in comparison, formal services provided direct care for almost half the adults.

When the study population was grouped according to the members connection with disability services, a link between this characteristic and type of residence straight after transition was suggested. The high proportion of adults attending disability day services who moved into disability supported accommodation suggests that families who are already part of the disability service system have advantageous access to specialist services compared to those outside the system. An explanation of this trend may lie in the history and nature of disability services in Victoria. Most day centres were established by voluntary parent associations and, until 1986, associations financed and managed services with little government control or support. Many associations developed accommodation options and a sense of obligation to meet parental needs because of the substantial voluntary input parents had made.

Nevertheless, at the time of transition, access to disability services was not an issue for families outside the service system. There was no evidence to suggest that those unknown to the system had difficulty gaining access. Disability services had been responsive when approached, albeit by very few families. Most families outside the disability system had relied on informal sources of support to both manage the process of transition and to provide primary care. Few had sought assistance from formal service systems. Why this was so and whether choice, lack of knowledge or mistrust of specialist services was the reason was not always clear.

Almost three-quarters of families had managed the transition process without the support of formal services. Support that was provided generally came from hospital social workers or staff from disability day centres rather than regional disability teams. This may be explained by historic factors. The study population made the transition between one and 46 years ago whereas regional disability teams have only been established for the last 15 years. However, no evidence indicated that adults who had made the transition more recently had been more likely to receive assistance from regional teams.

For those families involved in day centres, strong support with both the planning and management of transition was provided by the tight-knit communities of parents that surrounded disability day services and staff. This support from a peer group and specialist staff, aware of the issues, who knew the adult and intellectual disability well, was not available to families outside these services. Thus, involvement with a disability day centre supported families in both dealing with the transition and in gaining access to disability residential services. It also secured considerable stability and security for the adults with intellectual disability, who, after transition continued to attend the centre and moved into accommodation attached to centres where they knew most of the residents.