Some people are more comfortable talking about the future than others. But they’re important conversations to have. If you care for someone with a disability, talking together about what the future might look like, can give you a better chance of creating a future that fulfils their aspirations and meets their needs. It can also take a lot of pressure off you.
In this extract from the Leap in! ebook Future planning: A guide for parents and carers, we cover independent and supported decision making, planning for a good life and making decisions on another person’s behalf.
Independent decision making.
Every person has the right to make decisions about their own life.
“Respect for the freedom to make choices should be accorded to all persons with disabilities, no matter how much support they need,” says Theresia Degener from the UN Committee on the Rights of Persons with Disabilities.
It is important to approach future planning and associated decision-making with an understanding of the rights of people with a disability. In their guide, Helping People Make Decisions, the NSW Public Guardian states that people with a disability have the right to:
- Make their own decisions about every aspect of their lives
- Have help to make decisions
- Say what they want to do
- Take risks.
If a person with a disability is able to make their own decisions independently, they have the right to do so. In this case, the role of a parent or carer can take on the role of a sounding board or guide.
Supported decision making.
Some people with a disability may require support when it comes to making decisions. “Supported decision making” is the term used when a person makes a decision by themselves with support or assistance from others.
Supported decision making provides an opportunity for the person to learn and build their decision-making capabilities (Supported decision making communication strategies).
Types of support.
Supported decision making can take many forms and the role you’ll play will depend on the experience and abilities of the person you care for as well as the complexity of the decision being made.
Examples of the ways you may be able to support the person include:
- Providing information about the options available
- Describing the pros and cons of each option, or exploring them together
- Using tools or visual aids to improve understanding
- Supporting the person to try out different options
- Identifying other people to talk to or researching additional information to aid the decision.
Tips for talking together.
It is important to set aside enough time for each conversation and to find a quiet place where you both feel safe and will not be interrupted.
- Check if the person would like someone else to be there to help them communicate their views (for example a speech pathologist)
- Ensure any communication aids they use are available
- Talk about one topic at a time
- Have some information prepared in advance
- Give the person time to think about things and ask questions
- Allow the person to finish what they are saying
- Write a list of questions for further research and between you, allocate who is going to do the research
- Discuss a time for a follow up.
Planning for a good life.
An important question to consider in the future planning process is “What does a good life look like?”
What a good like looks like will be different for each person. But most people would agree that having a home to live in, social connectivity, an opportunity to make a meaningful contribution to society and the ability to learn and grow are some of the important aspects of living a good life.
This can be a valuable guiding question for future planning that helps to ensure the person you care for is at the centre of decisions about their future. For people with a disability who have the capability to be actively involved in decisions about their future, understanding what they perceive as a good life can guide both decisions and goal setting. It’s also an important part of the NDIS planning process.
Topics to explore together.
- What are the person’s goals and aspirations when it comes to their home?
- What are their work goals and how can training or education assist?
- What are the skills the person can learn in the short-term that will help them reach longer-term goals
- Identify any barriers to meaningful relationships such as a lack of confidence, poor communication skills or challenging behaviours. Talk about how to overcome barriers or challenges.
Making decisions on another person’s behalf.
Sometimes, circumstances require another person to make a decision on behalf of a person with a disability. Such decisions can be considered a denial of the person’s rights and should be treated with consideration, caution and with reference to appropriate laws.
Under Australian law, parents are able to make decisions for their children until they turn 18. When someone turns 18, they are considered an adult and legally allowed to make their own decisions. This law applies to everyone, regardless of ability.
Many families implement informal decision-making processes to support a person with a disability after they turn 18. These often work well and eliminate the need for a formal approach.
National Disability Services (NDS) is Australia’s peak body for non-government disability services and outlines the two decision-making processes in its Supported Decision Making Guide for NDIS providers, which is outlined below.
In situations where a person with a disability aged 18 or over is unable to make a decision for themselves, a family member or long-term carer or even a close friend may make informal decisions on their behalf. Informal decisions can be made when:
- “They reflect the person’s wishes and preference, where known
- And the person seems willing to go along with the decision
- And there is a shared view among the significant people in the person’s life that this should happen
- And it’s not a decision that requires a formally appointed decision-maker.” (Source: Supported Decision Making Guide, National Disability Services.)
Informal decisions cannot be made by providers or staff.
A formal legal process is usually required to appoint a decision maker for an adult 18 years and over who, because of a disability, is unable to make their own reasoned decisions. This may include:
- Where there are conflicting views about what is best for the person
- When a bank or financial institution wants to see formal authority
- When the person objects to the proposed decision (verbally or through their actions)
- For decisions affected by legislation
- When the parent or main carer becomes unwell and can no longer
- provide adequate care or support.
(See Appointing a Guardian or Administrator in Legal and financial considerations for details).
The information provided here is general in nature only and does not constitute personal financial or legal advice. The information has been prepared without taking into account your personal objectives, financial situation or needs. Before acting on any of this information, you should consider the appropriateness of the information having regard to your objectives, financial/legal situation and needs.