This article outlines some of the things carers and whānau might want to think about when they are exploring options to build ‘a good life’ for their son or daughter.
Investment in creating space to think about a ‘good life’ can be rewarding and sometimes life changing.
Creating space to think about ‘a good life’
As carers and whānau we sometimes get caught up with the day-to-day challenges of navigating ‘systems’ and ‘decision makers’, who may not fully understand what we need or want for our whānau member. This can be exhausting.
When we get clearer about what is possible and use energy towards creating a ‘good life’, we can start seeing positive change.
We need to think about how we can:
support our disabled whānau member to have a ‘good life’
get clear about what you and your whānau member want
help them develop aspirations and goals for the future, and
think about ways to achieve this.
Understanding what we want for our family member can also challenge our thinking (our direction and what we thought was possible).
Some thought provoking ideas may include …
What is possible?
Achieving our future vision for disability supports is complex and may take time. There will be many details to work through.
Using a principles-based approach when developing a plan will help ensure you stay on track to progress your vision. The Enabling Good Lives principles can help guide decision making. They can also be used as a lens on current and future supports and services (ie. how does the service align with the principles?).
You may want to talk to other whānau about what they have done to gain a deeper understanding of ‘what could be’ (whānau highly value hearing about other people’s experiences).
What does my family member want?
Supported Decision Making (SDM) is about having the supports or systems in place that enable any person to make a decision. It recognises that with support almost everyone can make their own decisions and indicate their preferences.
Am I ready to work together for effective change?
Sometimes, when attempting to express our point of view, we can get caught up in being defensive or getting lost in what is not working for us. Some whānau have found a simple framework called (DESC) to assist them to stay neutral and present.
DESC is a framework that helps you to:
describe the situation
express how you feel
specify what you would like done differently, and
outline the consequences (the positive outcome/s that will occur when the change has been made).
This framework helps people to look at ‘what can be’ (not what isn’t) and increases the chance for a positive result.
What new skills do I need to learn?
Working towards ‘a good life’ takes energy, time and a range of skills.
The types of skills, tools and information you may want to know about could include:
planning for the future (creating a vision for you and your whānau)
transitioning from school to adult life
supported decision making
effective communication and how to negotiate what I want
how different funding mechanisms work
being an employer, finding and hiring staff and relevant employment legislation
information on changing or setting up a new service (ie. work or living situation), and
information on easy to use systems and procedures, etc.
If you are thinking about setting up a new service for your whānau member, think about whether you or someone else will do this for you and what this might look like?
To assist your whānau member to have ‘a good life’ some carers and whānau have found various apps and processes to be useful, such as; medication alarms and trackers, epilepsy management and journals, location tracking, daily communication updates on their ‘good life’, tracking personal goals (including health and wellbeing needs), etc.
With capacity and capability opportunities for disabled people, carers and whānau you can create the foundation to build ‘a good life’ and turn this into a reality.
It can be very challenging to change our thinking from an old approach to a new approach? So keep up-to-date with what people are doing and what is happening with disability supports and services. Look for local face-to-face or on-line groups that might meet your needs.
Supporting other whānau
Where possible, we need to support other whānau and increase our ‘voice’ as whānau leaders. This is particularly important with changes to disability supports and services and the impact this will have for the people we care about (and the wider disability community).
You may want to think about:
what and how you might contribute?
what skills you might need (ie. governance training, facilitation skills, mentoring, an in-depth understanding of the EGL principles and approach, etc)?
how you will stay informed and have your say?
where to get up-to-date information and provide feedback, and
how to connect with other whānau and national carer and whānau networks.
Remember we ALL change direction and choose different pathways in life and its ok to change along the way.
You can request a workshop to develop new/additional skills needed to create a ‘good life’ by clicking on this link.