This blog has two parts. Both talk of the difficulties in families communicating about planning for the future for and with a person with disability. The first then provides tips for parents, the second for siblings.
The Parent Experience
Parents’ fear about the future is understandable. Most times, you have to put huge amounts of time and energy trying to ensure the best outcomes for your child with disability. The thought of what might happen as you age and become less able, or even unable, to provide care can keep many parents awake at night. The current lack of good services can add to the worry.
You may hope that siblings or other family members will step in as they are more familiar with the person with disability. On the other hand, you may have always avoided adding to the responsibility of your other children. Or you might be just too overwhelmed to cope with change or even think about these things. However, these discussions could not be more important, and the earlier the better. Far better for longer term structures and supports to be in place before crises occur.
Involving the person with disability
Ideally, the person with disability can be actively involved in whatever level possible with the decision making but, in many cases, it is families that do a lot of the planning and organising. And that’s where things can get tricky, especially if family members don’t agree on what roles they will play or what is best for the person with disability.
The sibling experience
Most siblings love and care deeply about their brother or sister with disability, but they too can worry about the future. Siblings talk of being anxious that they will be left with the full responsibility. For some, these expectations can be too much and, as they move into adulthood, they start to move away from their family, especially if they have not accessed any support themselves, either within or outside the family. In this situation, everyone involved misses out on important relationships.
On the other hand, there are siblings who give up their own life dreams to make sure that their brother or sister is cared for. But is that the best outcome for both?
Talking with siblings
Many siblings express frustration that parents won’t communicate with them. They consider that the main barriers to future planning include, ‘parents won’t discuss the future’, ‘parents assume that siblings will take over the daily caregiving’, and/or ‘parents are not ready to let go’.
However, family discussions about the future that are open and honest and include positive reflections on what the future will look like for the person with disability, enable planning for the person to live as independent a life as possible with both family and community supports.
Without needing to take over full caregiving for their brother or sister, siblings can be involved in the life of the person with disability, more in a sibling role. rather than as a ‘carer’. This can add to the dignity for the person with disability. The key factor in families managing well is that the options and choices are discussed and planned for, and everyone is clear about their respective roles. Siblings can continue to ‘care about’ and oversee supports, rather than ‘care for’ a brother or sister.
Ensure there is a central file, either digital or hard copy, that contains all the information about your person with disability. Not only information about the support people in their life, e.g., doctors, support workers, allied health practitioners, but also their favourite things, what they like to do, their favourite foods etc. This is of most relevance when the person with disability finds it difficult to communicate – the resource can be used by anyone if needed. It can also set out your hopes for your child’s future.
Try to understand the perspective of a sibling. Acknowledge their experiences and feelings as children and realise that they didn’t necessarily have the skills or maturity to cope then and so some difficult feelings may have carried over into adulthood. It is never too late for this acknowledgement to happen, e.g., ‘I understand it was hard for you too growing up – I am here for you.’ Siblings Australia has several resources/services to assist you in understanding the sibling experience. If you have younger children, consider completing the SibWise e-learning program.
Try not to assume anything about future caregiving roles. Give siblings choice. The most important thing is that the relationship between siblings is nurtured from a young age to ensure a stronger bond.
Tell your sib children from whenever they start to show concern, that you have things in hand, e.g., ‘We are working on a plan to make sure Ben has all the supports he needs now and as he gets older, but we hope you will take an interest in those plans and continue to be involved in his life.’
Seek outside help from lawyers, financial planners, housing experts, e.g., The Housing Hub. Seek help from one of the National Alliance of Capacity Building Organisations, NACBO. Consider Circles of Support for your child, even when younger, to broaden the number of people who will look out for them.
Look out for Part 2, which will focus on adult siblings who are finding family communication difficult.