Earlier this year, actor Colin Farrell shared the difficult decision he and his former partner made to move their 21-year-old son, James—who lives with Angelman syndrome—into a care home.
Such a step is never easy, and, according to quotes from Farrell's interview, one of the main reasons was the peace of mind that comes from knowing the environment James will be cared for, both now and in the future. By making this choice themselves, they could ensure his needs would be met even if they were no longer able to provide care.
When a child with additional needs lives at home, families must carefully consider what will happen when caregivers can no longer fulfill their role, whether due to illness, aging, or unexpected circumstances. The transition can be sudden, and new caregivers are often required to step in immediately, with little notice.
The role of a support roadmap
One useful tool is a support roadmap, which can be shared with relatives, so everyone understands your child's current and anticipated needs, along with your expectations for their future support. Such a document might include:
- Living arrangements: clarify where, how, and with whom your child should live in the future. This could involve remaining in the family home with support, moving in with other relatives, or transitioning to a residential home, care home, or supported living arrangement.
- Deputyship and decision-making: identify who should apply to be your child's deputy if they lack capacity to manage their property and finances, or health and welfare decisions. While you may have managed these matters informally, it is often more challenging for non-parents without official recognition. Outline the process, expected timeframes, and alternatives if the preferred person is unable to take on the role.
- Aspirations and opportunities: record your hopes for your child's future, including employment, volunteering, or other opportunities, as well as their favourite activities and therapies that benefit them.
- Current care and support: provide details of existing care arrangements, support teams, and the structure of ongoing care.
- Levels of decision-making: specify which decisions your child can make independently, which they can make with support, and which should be handled by a deputy or trustees managing financial matters.
- Assigning roles: note which members of the support group are best suited for specific decisions based on their skills, experience, and the child's preferences in different situations.
Open communication and reassurance
By openly sharing your hopes and expectations with those who may support your child in the future, everyone gains clarity about their potential roles and can be better prepared.
This communication also provides opportunities for others to ask questions of you or express concerns, and you have the opportunity to adjust plans as needed, ensuring that your child's needs are met reliably and compassionately, and that all involved feel confident about their potential future responsibilities and the important role they will play.
Regular reviews can be invaluable as circumstances evolve. Life changes such as health developments, new opportunities, or shifts in family dynamics may require updates to living arrangements, decision-making roles, or the types of support your child receives. Involving everyone in these periodic discussions helps maintain a sense of shared purpose, fosters understanding, and ensures the support roadmap remains an evolving document that reflects your child's needs and aspirations and how they can be best supported.
Additionally, including contingency plans allows the family and support network to respond quickly and confidently to changes in their own circumstances and the role that they can play. Like having a squad, you need substitutes if the team needs a break.
This proactive approach not only safeguards your child's wellbeing but also provides peace of mind for all involved, knowing that every eventuality is thoughtfully considered.
Ultimately, the document should be more than an instruction manual; it will be a collaborative document to provide for your child's future, designed to adapt and develop as they do.
By prioritising transparent communication and forward planning, you can build a robust foundation of support that provides for the individuality of your child.
The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.
