After Robbie left school in 2005 we thought the only option for him was to spend his days in congregated day services.
However, these services did not really suit our son. He is profoundly deaf and needs signed communication. It was difficult for services to find and keep staff who fulfilled this requirement and Robbie’s difficult behaviour was also making life quite challenging for everyone. We felt that his abilities were often underestimated and his days were not particularly productive – we became very concerned that he was actually losing skills and abilities that he had previously. We had very little control over how he spent his days or who he spent his days with.
Our family’s journey to self-direction began when my husband and I attended a Pave the Way workshop which challenged us to think outside the square and to consider the question, “How can Robbie live the best possible life?” rather than the question we had been asked for the previous 20 years, “What services would make life easier/better?” For us this was a paradigm shift and actually quite confronting as we really had to face the future head on. We had constantly worried about what would happen to Robbie when we were no longer around, but it had been easier to bury our heads in the sand and we had become used to being reactive rather than proactive.
It was from this point on that Robbie’s life and our lives began to change for the better. We regained a sense of hope and started to dream again and believe in possibilities. We started to develop a detailed and clearly articulated vision for Robbie’s life now and for his future which formed the basis for our planning and continually helps us to measure our success. We became convinced that we wanted to have the power in decision-making about Robbie’s life as we were the ones who knew him best and knew what he needed in order to live a good life.
Our planning for Robbie is now based on looking at what other young men of his age are doing rather than looking for the best service. To make the ‘ordinary’ happen requires extra-ordinary effort but it is so well worth it.
Since moving to a model of self–direction and full self-management with Bespoke Lifestyles, we have been able to achieve so much.
Robbie is now living an inclusive and valued life in his community. He is living independently (we have a transitional plan and a permanent future plan), he is doing something meaningful everyday and is contributing to his community. We have an enthusiastic team of workers of Robbie’s and our choosing who can communicate with him and Robbie is now empowered to make decisions every day about his life. He is leading an active social life and has greatly increased his meaningful roles in society. He is also now becoming known and integrated into the Deaf Community. He has greatly developed skills in all areas of his life and finally, he is now calm, content and engaged and the major behavioural issues of the past have all but disappeared.
Our family now takes responsibility for all decisions about Robbie’s life in line with our vision. We are able to organise the support that he needs – who, when, what and how. What we have found is a much greater sense of loyalty from the workers and we now have people who have been supporting him for a number of years and show a real sense of commitment to him. We provide the ongoing training and supervision of staff and the support is now tailor-made for Robbie.
I believe that to successfully self-direct, the following is needed:
- A clear vision and clearly articulated goals to achieve this
- A real desire to work within this model
- Ongoing planning (including succession planning)
- A supportive network
- Energy & resilience
- Confidence
- Time management skills
- Good management systems
- The ability to source support workers
- Support from others