We all need to plan for our futures. For example, thinking about where we will live or work as we get older, how we will make sure we have enough money for retirement or who will make decisions for us if we are no longer able to due to illness or injury.
Siblings are often concerned about more than just their own future planning. This is particularly pertinent if their brother’s or sister’s decision-making abilities are affected by their disability. Understanding that there are often barriers to future planning, this section aims to assist in navigating the process.
There is no one method of future planning with, or for, a person with a disability but there are various questions which may prove useful to consider in the process, including:
- What might happen when your parents can no longer provide caregiving to your brother or sister
- What role you might play in the planning process
- How you can contribute to a ‘good life’ for your brother or sister with disability alongside your own life goals.
- Does your brother or sister need or want you to be involved? This will depend on the decision-making capacity of your brother or sister but also the nature of your relationship with them.
- If your brother or sister requires assistance with decision-making, who will assist? Is there a need for formal decision-making arrangements regarding medical, legal or financial issues, e.g. Guardianship or Power of Attorney?
- Where will your brother or sister live in the future? Can they live independently with minimal support? Or will they need to live in a more supported situation? Often the waiting lists for supported accommodation can be quite long so planning ahead is useful.
- How can you ensure your brother/sister is financially supported and secure? Financial planning may cover issues such as developing wills and/or trusts (e.g. Disability Trusts) and investigating benefits or entitlements, such as the Disability Support Pension, or the NDIS.
- If you or your family were no longer around, how would you ensure people understood the wants and needs of your brother/sister with disability?
- In the absence of your parents/guardians/carers, has your family identified and agreed who will provide advocacy for and with your brother/sister in the future? Who will act as a ‘nominee’ for their NDIS Plan if your brother/sister cannot manage their Plan?
- Have you considered an Advance Care Directive, a legal form for adults to write wishes, preferences and instructions for future health care, end of life, living arrangements and personal matters and/or appoint one or more Substitute Decision-Makers to make these decisions on their behalf when they are unable to do so themselves? For further information see www.advancecaredirectives.sa.gov.au (South Australia)
Many families have difficulty creating future plans for their child/brother/sister with a disability. Some reasons for this include:
- Uncertainty about the process of future planning and a lack of readily accessible information. Siblings and parents/guardians/carers may not want to have potentially difficult discussions.
- Planning for the future raises sensitive issues such as ageing, declining abilities and death of parents.
- Family members may disagree on the best approach to planning for the future which may cause conflict.
- Uncertainty about how to best involve the person with a disability in these discussions.
- Uncertainty about what services are, and/or will be, available to your brother/sister with a disability.
- Some ageing parent and other carers may have experienced service systems which were not responsive to their needs and may be used to ‘going it alone’, which can mean they are reluctant to engage in formal support services.
- Some ageing parents do not want to ‘burden’ adult siblings with responsibilities.
- Siblings may feel there is an assumption they will assume primary carer responsibilities for their brother or sister.
“My parents assume she will come and live with me once they go. It’s never been discussed.”
- Siblings who live at a distance may be unsure about how to be involved or may not want to be involved.
- For some culturally and linguistically diverse families there may be additional barriers such as the feeling it is not appropriate to have care provided outside the family home, for example, they have a strong family obligation to care for their children within their own community.
- Make contact with other adult siblings or read about their experiences with future planning.
- Gather information about the steps involved in future planning.
- Begin the conversation about future planning with parents, the person with a disability and other siblings.
- A ‘Letter of Intent’ can be drawn up outlining your family’s plan for your brother’s or sister’s future, in case something should happen to the family. Although not a binding legal document it provides clear information for people involved in future care for your brother or sister. For example, a family might record they want the person to live independently with support and maintain contact with their extended family and their local community group, e.g., Church, scout group.
- A personal profile can be developed for a person who has difficulty communicating their needs and wishes to others. A personal profile details the likes and dislikes of the person with a disability, their hopes, how they communicate, important relationships in their lives and much more. For example, ‘John has a special relationship with the lady next door who bakes his favourite cookies, he enjoys watching football on TV and does not like spaghetti’. Of course, the final document might be much more detailed and meaningful than this, but the idea is, if anything should happen to those who know John well, anyone else can pick up the document and have a better sense of this person’s life.
- Consider developing a ‘circle of support’ or micro-board for your brother or sister, where a group of people commit to being part of a support network for the person who is in the centre of the circle. This could then become a part of the Letter of Intent mentioned above.
- Find out about agencies in your State to assist you with future planning.
- Research through books, the internet. For example, the following might be helpful
- Safe and Secure: Seven Steps on the Path to a Good Life for People with Disabilities
- Planning for the future, a government booklet.
In every family there will be times when it will be difficult to communicate effectively and talk about important issues. In this context, a family may consist of parents, siblings, extended family and cultural or kinship relationships.
Families vary in their abilities and willingness to talk openly and honestly. This may depend on the family’s history, emotional closeness and the nature of the issues to be discussed. The more difficult emotions an issue is likely to raise, the harder generally it will be to discuss.
Some families may find it difficult to discuss particular issues related to the experience of disability, such as medical decisions and future planning. Adult siblings and parents may hold concerns about what will happen when parents are no longer able to provide support for the person with a disability. There may be a range of feelings or beliefs to inhibit open communication between all family members.
- Sometimes feelings can be so strong it is difficult to discuss the issue rationally, so any discussion is avoided.
- Adult siblings may have grown up feeling the needs of their brother or sister with a disability were more important than their own, or they needed to protect their parents’ feelings by not talking about their own concerns or experiences.
- Parents may have tried to protect siblings as children, and possibly into adulthood, by not discussing with them issues related to their brother or sister, feeling it was better not to burden the sibling with such issues.
Equally, other families can communicate effectively, becoming closer and developing resilience through their experiences. They can talk with each other in meaningful ways about their present feelings and future planning.
Tips for encouraging communication
- It is important for family members to try to understand each other’s perspectives. Family members sometimes need to ‘clear the air’ before moving forward in a positive way.
- Adult siblings have their own unique experiences that may have been difficult to cope with from an early age, before their emotional and intellectual maturity has developed. They will likely reprocess these experiences as they get older. Hearing from other siblings or parents of siblings may assist.
- And parents will have their own experiences and feelings which are likely to have been shaped by beliefs about disability, their culture, issues around loss and grief etc.
Be prepared to put your own needs on hold initially and spend time actively listening to each other. Each person needs to feel their experiences and feelings have been heard and understood.
It is important for parents to not make assumptions about the responsibilities their ‘typically developing’ adult children will or will not want to take on, in relation to future planning. It is equally important siblings avoid assuming what parents may expect.
Adult siblings and parents will have a number of responsibilities – to themselves, their families, their work and/or education. All of these need to be considered when family members talk to each other about the future.
It is important to have realistic expectations about what you can achieve. Sometimes just raising an issue will allow for conversations to flow naturally. At other times, ongoing discussions may need greater effort from all parties.
Make a plan about what you want to discuss. You may not tackle every issue the first time, but creating conversation is an important step. The other person also may have been struggling with how to begin.
So how do I start the conversation?
- Write a letter if you feel you can’t raise things face-to-face. This gives others time to deal with their emotional reactions.
- Try to find out how things were from the other person’s perspective. A parent or sibling could say to the other: I can understand it must have been difficult for you OR how did you feel about….? OR What are your hopes for the future?
- Discussing whether parents have made plans for their own futures might lead on to discussions about future planning for the person with a disability.