Abstract
INTRODUCTION: A question that concerns most parents of disabled adults with high and complex needs (HCN) is: “What will happen to my child when I am no longer alive?” One of the factors that could assist these parents in securing a better future for their children beyond their own lifetime is timely succession planning.METHOD: Semi-structured interviews were conducted with 14 Aotearoa New Zealand parents and 18 Indian parents with a view to understanding their wishes and worries concerning the long-term care and well-being of their adult children with HCN. This article focuses on the parents’ views on their own role in succession planning.FINDINGS: Based on parents’ responses, six key components of succession planning were identified: preparing the child; preparing the informal network; sorting out the living arrangements; securing their financial future; creating a life plan and a training manual; and preparing the community.IMPLICATIONS: The study revealed that not all parents have the necessary skills, resources or even desires to engage in succession planning and hence it becomes crucial that professionals working in the social services sector provide appropriate support to these parents.KEYWORDS: high and complex needs; succession planning; disabled adults; parents of disabled children
Highlights
A question that concerns most parents of disabled adults with high and complex needs (HCN) is: “What will happen to my child when I am no longer alive?” One of the factors that could assist these parents in securing a better future for their children beyond their own lifetime is timely succession planning
IMPLICATIONS: The study revealed that not all parents have the necessary skills, resources or even desires to engage in succession planning and it becomes crucial that professionals working in the social services sector provide appropriate support to these parents
The primary purpose of choosing the participants from India and New Zealand was to provide a unique insight into what influence does living in countries with varied levels of formal and informal support have on the wishes and worries of the parents of children with HCN concerning their children’s longterm future
Summary
A question that concerns most parents of disabled adults with high and complex needs (HCN) is: “What will happen to my child when I am no longer alive?” One of the factors that could assist these parents in securing a better future for their children beyond their own lifetime is timely succession planning. Whilst this question often troubles many parents of disabled children, for a majority of the ageing parents of adult children with high and complex needs (HCN), this is perhaps the most worrisome question as, even within the disability population, people with HCN are considered to be the most vulnerable group Their increased vulnerability compared to other disability groups could be attributed to the nature of the support they require (including intimate personal care) associated with deficits in cognitive and communication abilities to speak up and fight for their own rights. In most cases, the parents of children with HCN end up assuming multiple roles in their children’s lives including being their primary carer, their friend/companion, their interpreter, their advocate, their welfare guardian, and their financier or finance manager. Given the vulnerability of their children, despite the personal toll caring takes on them, facing the prospect of leaving their children under someone else’s care, becomes a matter of great concern for the parents of children with HCN
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