Navigating the relationship between participants and their family members and balancing the dignity, choice and control of clients with the complexities of family dynamics is often a challenge – and layers are added if family members are also informal supports. How do you juggle the needs and wants of all parties in these situations?
EH – Supporting people with disabilities and their families to navigate life and dignity of choice has been interesting. One of the biggest things I focus on is dignity of risk. For many people, the ability to make choices about how we live is unchallenged – we have the ability to choose who we spend time with, what we consume, and where we live. People with disabilities quite frequently have these choices questioned or indeed changed frequently.
I work hard to focus on the person with a disability – it is their plan after all – to help them either make decisions or to help empower them to learn the skills and gain the information they need to make the decisions. I work with families, typically making sure to remind them that the person at the centre of the decision needs to be involved and can and should be allowed to take a risk/make mistakes that are age appropriate.
When the struggle is hardest – e.g. the risk is likely to have a bigger impact on life choices or to the person’s health – I have found engaging professionals to support both the person and the family is the most beneficial method.
SC – Families can be part of decision making. At the end of the day, support coordinators are there for the participant. You can also encourage that, where the NDIS is unable to provide support, their families and mainstream supports are explored.
KR – We generally work with children, so don’t come across this regularly. It can be difficult and you tend to take on the role of the mediator. I try and ensure it is a ‘win/win’ situation for both parties.
DB – It can be a very sensitive situation to navigate when the desires and expectations of family members are not completely aligned with the desires and expectations of an adult participant.
Part of the role of the support coordinator is to help educate all parties on the NDIS Act and the fundamental right of a person within this Act to self-determination. Family, friends, and advocates play an important role in the life of adults with a disability, however it is the participant’s right to determine who helps them to make decisions or whether they want help to make decisions.
Navigating different expectations requires sensitivity, understanding and compassion, particularly if the decision a participant is making is seen as containing some risk or leading to an outcome that the family member does not want for their loved one.
The support coordinator should take the time to listen to the family member and validate how they are feeling. A skilled support coordinator should also help the family member talk about their concerns with their loved one and also help them to understand that the decision is ultimately the participant’s to make.
Sometimes it can be confronting for family members to see their loved one make decisions that they don’t agree with. The NDIS can be a catalyst for the participant to have a level of autonomy and self-determination that hasn’t been available to them in the past. This change can be emotionally difficult for family members and helping them to connect with their own support around this can be vitally important. Carer organisations have some great services and are always a good place to refer family members for additional support.
