Occasionally, I am asked, “Kathy, how did you start doing self-direction?” and “What sort of things do you do to self-direct?” Big questions – and not easily answered in a sentence or two. When I started self-directing in the early 1990s, there was no information around at the time to guide me. However, that is not the case now! The reality is that there is a lot of useful information on the internet and on government department and service provider websites explaining what you need to do to self-direct as well as what this looks like. Within these practical information sources, the focus is often on the tasks and activities associated with self-directed arrangements, but not a lot on seeking answers to questions like “Why do I want to self-direct?” or “Where do I start?” The answers to these questions can be really informative – and it helps to take the time to consider why self-direction would be the best response for you. Often, people say to me that when they get the funds they need for the person with disabilities, ‘things will be better’. Other people just want the ‘manual to do self-direction’ so they can ‘get on with it!’
While I can see where they are coming from, I have found that the time taken to work out how things will be better in future, as well as exploring the possibilities and options that can help people to get to that better place, is time well spent.
“Unless you start with the ideal, you’ll get something far less” (author unknown)
On a personal level, I started on the journey towards self-directing and ultimately self-managing my daughter’s supports when she was still a teenager at school. The first step commenced when my daughter’s teacher asked me, “What is your vision for B’s life when she leaves school?” B, at the time, was 14. I really hadn’t thought about her adult life at all. Like so many other working parents with young children, life was incredibly busy – and 18 was a whole 4 years away, after all. Surely I would have time to think about her life beyond school when she was closer to 18? No such luck! B’s teacher was persistent and the task for me was to have a vision worked out within a month (nothing like a bit of pressure to get me going!). The vision I developed was based on what I wanted for each of my children: the best that life could offer to and for each of them. Within my vision for B, this meant B having her own home, having interesting and encouraging people around her, having a valued role in her community, doing fun things – enjoying a great life, in a nutshell.
At that time, I had no clue as to how any of that was going to happen. How on earth was she going to live in her own home, independently, when we didn’t have the money for that? In my search for options and solutions, I couldn’t find anyone with her level of disability living independently anywhere in the Eastern states of Australia (this was in the late 1980s – things are very different now!). But I persisted with the vision and the dream for B’s life, talking to many other people throughout the following years, looking for any ideas that we could try. Most of the people I talked to were perplexed about what I meant, or hadn’t considered that this could be a possibility for someone who is a quadriplegic, brain blind and unable to speak (they didn’t realise how strong-willed my daughter really is!). In the end, there were no other situations that compared with what I could see in my vision for B, so I decided that we would simply strive for B’s best life anyway.
There is a poem by Robert Frost that talks about the ‘Road Not Taken’ (take the time to read his poem on http://www.poemhunter.com/poem/the-road-not-taken/) and, at the time, I was making decisions that could have gone either way. Not right or wrong – just different possibilities that could have evolved into a variety of outcomes – but I couldn’t see very far ahead at the time. Sometimes I just had to take a step – anywhere – forwards, preferably – a movement, even if I couldn’t see where that step would lead. I based the steps on what I valued and believed i.e. that B’s life mattered and that she should have the same opportunities in life as those offered to her brother and sister. And I stuck to that vision, even when people around me had no idea what I meant or why it was so important to me – and for B.
So a question or two for you:
What is the vision you have for your child’s life?
Why is this vision so important to you?
If you are a person with disability reading this, please swap ‘child’ with ‘own life’.
Do the answers ‘fit’ with your beliefs and values? You might find that when you are looking at your answers, you become aware that some of these beliefs and values are actually those of your family, your friends, your heritage or society. There is nothing wrong with that – but sometimes those other beliefs may not be the ones that will serve you now. If this is the case, refine the answers until you get the ones that resonate most with you.
Write the vision down – anywhere you can see it on a daily basis, like an affirmation. I know people who use vision boards (there are plenty of sites on the internet that can help you with making a vision board) or use sticky notes placed on mirrors and visible places throughout their home to help them keep their eye on the goal, their vision. It doesn’t matter what method you use, but your vision must be yours, and true to what you deeply and inherently believe. It must also be something that you can hold onto for some time – after all, not all visions and goals are achieved as quickly as we would like!
Having a vision is an important ‘building block’ in the foundation of successful and sustainable self-directed arrangements. When I had worked out the vision, I added in a mission statement which said:
“Our mission is to provide high quality support to B in a way that enables her continued right to a lifestyle to which we believe she is entitled”
Once I had the mission in place, I developed a set of values for B’s team. These values focus on:
- Her right to make her own decisions in relation to her lifestyle
- The provision of support that enhances B’s quality of life
- B’s right to experience risk, within an environment that respectfully safeguards her safety
- Ensuring that B’s personal dignity is respected at all times & in ways that are similar to any other person of her age
- Being able to respond to B’s changing needs, and plan for these changes where possible in advance of these changing needs
- Being able to continually encourage innovation and diligence amongst B’s support team, and to provide appropriate recognition of the important role of these people in B’s life.
Over the years, having the mission & values in writing has really helped to engage supporters in the vision for B’s life. These people look at these values & absorb them, making them part of what makes the bigger view of B’s life work. If people don’t like these values or our approach, I have found that they very rarely stay around.
Some more questions for you:
What is the mission for what you are doing to enhance your child’s life?
What values drive what you are doing for your child?
Why is this important?
As before, if you are a person with disability reading this, please swap ‘child’ with ‘own life’.
In my next blog, I will explore the other types of ‘building blocks’ that contribute towards building a robust foundation – and also explain why this is important!