Self-directed LivingSelf-directed living means people living good lives, ordinary lives, in ordinary places, as opposed to ‘special’ lives in separate, segregated places.
Getting a Life, Not a Service
‘How can we use what we have to create what we need?’ is a question that we often ask ourselves and the families that we work with. It arises from a belief, a strongly held philosophy that much of what is good in life is not in the currency of money. It also comes from a recognition that we can lose years, decades even, in the struggle to obtain better services and more resources. But that ultimately our children’s life is here and now. If we shift our focus, we can get busy creating with the tools that we have to build a good life, an ordinary life for the people we love and support.
More than ever, we believe that families need to be thinking about what really matters and what makes a difference in ensuring that we are living good lives and planning together to create meaningful lives with and for our children as they reach adulthood. Starting to think about creating a positive and hopeful vision for the future, a vision that is supported by others is key to moving in the right direction. Planning for the future changes the present!
In our work with families, much of what people say makes a good life is not provided by services. So, let’s figure out:
- what we can do ourselves
- what we need support with
- what we can create in partnership with others.
If Not This, Then What?
Many families and support groups are clear on what they are against and what is not working – but less clear on what they are for and what is working. We suggest you start by developing a vision of a good life. Take time to discover what is important to your family member and what are their gifts and talents. Focus on their strengths, not their deficits.
Get to know your child even better, and help them to recognise their assets and gifts – we all need support and encouragement to recognise, use and share these gifts with one another. If your goal is the community and an ordinary life, remember that communities aren’t interested in our problems – only in what we can contribute.
Take some time to plan together as a family about the essential elements of a good life for your family member. It may seem strange at first, but this visioning process is remarkably powerful in helping to set a positive direction. This type of intentional behaviour is necessary to overcome some of the barriers which your family member may face and will help you to work out ways to get around typical setbacks.
Planning that we do together as families may take the form of an ongoing conversation and does not even need to be written down. This can help us discover where we want to get to, and to work together on ways to make that happen.
Bear in mind that children’s (and adults’) fundamental needs are for inclusion, participation, relationships, value and respect. Ask yourself how you can support that.
Where to Start
We know that an ordinary life, a typical life produces better outcomes for people than segregated pathways. Even so, people will try to direct you and your child to segregated options and you will need to be clear when this happens what your choices are.
This is not only important at crucial life stages like starting a new school or leaving school, but also when considering leisure and lifestyle options for your child, such as joining clubs and other groups. It is really helpful to connect with other families and to work with people who are positive, have high hopes and are creative, and who have managed to create good lives for their own family member.
Work out what a good life is by creating a compelling vision of a good life that you can articulate to others. Thinking about what a good life looks like now and in one, two and five years’ time will help you to get clearer on what you are working towards specifically.
Focus on belonging, relationships and valued roles. Many families have found this approach has a better track record than relying on services to figure it all out.Be aware that relationships, friendships, lifestyle interests, work opportunities and living arrangements will not happen automatically. Begin to practice the ‘art of asking’ and of ‘letting people in’ to assist and guide you in supporting you and your family member.
Thinking About Roles – What We Can Do
All of us participate in society through our roles. It is a focus on roles that we achieve many of the good things in life. Consider all the roles you occupy. Some were ascribed to you at birth – son or daughter, brother or sister. Others you acquired as you grew, taking up roles in school, the church, in sports groups and so on.
Because of culturally held low expectations, the lives of people with disabilities often do not follow these typical pathways. By working intentionally to create and sustain opportunities we can make sure our child is not left behind. Think about what valued roles your family member has in your family. Work on developing these roles first, as a strong foundation for taking up age-appropriate valued roles in the wider community. At the same time, work on your child’s image and competencies. Recognise that building and sustaining a good life for your family member is a lifelong project.
Always try and select the most highly valued option for your child as this maximises their chance of positive connections with their peers. Think about what other people their age and gender do. If you are planning an eighteenth birthday party – ask yourself where do other young adults celebrate and in what way?