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By Emily Acraman, Researcher

Many of us will be familiar with the age-old phrase: “A Mother’s work is never done.” For parents or caregivers caring for a disabled family member, this archaic proverb likely feels all too true. As our population ages and medical and social technologies advance, a greater number of disabled children are ageing in tandem with their family carers (usually parents). More than ever before, parents are playing an extended caregiving role for their children well into later life. For many of these parents and carers, concern over future care arrangements when they are no longer able to continue caring through illness or death is a significant worry (Lee & Burke, 2020). One of the factors that can assist these parents in securing a good life for their disabled adult children beyond their lifetime is succession planning (Walker & Hutchinson, 2018).

Succession planning involves making a plan for the future and is often connected to the progression of passing over family leadership roles. For some families this may mean planning for another family member to take over caregiving responsibilities. For others, this may mean having to rely on more formal types of support options. While planning for each family may be quite a different process, the importance here is about prioritising the time to have these discussions, before the situation reaches crisis point. As well, to involve all family members as part of these conversations, including the disabled family member. Research tells us, having a succession plan reduces the risk of the disabled family member experiencing negative outcomes (e.g. inappropriate living conditions), as well, reduces anxiety for all family members (Lee & Burke, 2020).

Although research highlights the importance of succession planning, in reality, we know very few families conduct thorough future planning. Often this is because of a lack of information about alternatives to family care, difficulties in discussing planning given its emotional nature, and not knowing who to involve in these discussions, or how to go about putting plans in place (Lee & Burke, 2020).

Parent to Parent are running a series of workshops over the following months around succession planning, called ‘Disability & Adulthood’. These workshops will include how to go about the planning process, and things to think about and include in your plan. If you are interested in attending one of these workshops, get in touch with your local Parent to Parent regional coordinator.

Tips and tricks for succession planning

  • Start with a vision. What does a good life look life for your disabled family member? Ensure ‘the vision’ focuses on the wishes of the disabled person for the life they want as an adult.
  • Begin early! It’s never too early to start planning for a good life for your disabled family member.
  • Build relationships. Having a network of caring relationships around someone with a disability can help to ensure connection, belonging, safety and security.
  • Involve ALL family members and the disabled person in the planning process. Determine what role friends and family members will play in the future care of the family member, and what support they need to carry out their respective roles.
  • While succession plans might look different between families, some things to include are:
    • Future living arrangements
    • Caregiving responsibilities
    • Legal considerations (e.g., welfare guardianship, power of attorney and property management)
    • Securing a financial future for your disabled family member
    • Making sure whoever will be involved in future care arrangements are up to speed with all the support agencies or networks currently in place
    • Preparing the disabled family member for how the current arrangements may change, addressing any potential concerns before changes occur

References

Lee, C., & Burke, M.M. (2020). Future planning among families of individuals with intellectual and developmental disabilitiies: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 94-107.

Thakkar, H. (2018). Its like me leaving a manual of me behind: Parents talk about succession planning of long-term care and support for their disabled adult children with high and complex needs. Aotearoa New Zealand Social Work, 30(2), 3-15.

Walker, R., & Hutchinson, C. (2018). Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: A systematic review of qualitative studies. Journal of Intellectual & Developmental Disability, 43(3), 453-462.

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