Over the past few years, and especially in the last few months, I have been reflecting upon my experience of shared supported accommodation. Some experiences I have encountered within the service provision has developed a distinctive grey area. My own thinking, trying to get these events in some sort of focus, has mainly been done from my perspective as an individual pragmatist. I live within an environment where, in order to survive, I am dependent on standardised practices.
What do I mean by a grey area? The grey area lies in my attempt to discern the system at work in this facility, the operational beliefs of the service provider. There are aspects of the care I receive from the group home that I am very happy with, and this is wholly due to the relationships that support me and which I have been able to build with the support workers who care for me daily. In all, the other 8 residents in my home are all also systematised to some degree, but they are happy. My concern and perception is this: such strategies to develop and sustain care in a systematised way, can too easily forget the basic elements of person-centred caring.
Person-centred Planning for people with disabilities
“Person-centred planning (PCP) is a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalised support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.”
So I have been tossing this around. Relating it to my own experience and my conclusion is this: the disability sector has lost its way by being caught up in politics and the self-interest of higher-ups. But, this doesn’t mean we can’t bring it back on track. There is a plausible and workable solution within reach to overcome many of the failures and inefficiencies of disability support, and these solutions should be grasped with two hands so that we can turn this around. Not only that, but people with disabilities can become empowered in the process. This to me, is evident in schemes that utilise some form of direct employment techniques, such as the National Disability Insurance Scheme (NDIS) which promises choice and control to its participants.
As you may have read from my previous writings, the NDIS has had a very positive impact on me. I am able to find and hire my own support workers because I self-manage almost all of my funding. This enables me to spend enough time with them everyday that I can build a trusting relationship with them. That is all I want from my support workers: it is not just about the support they give me, it is about the friendships we can create and sustain.
When Direct Employment was first introduced to Victoria, I was involved in the initial pilot program. It was a key reform within Disability Services that many people with disabilities on the NDIS should consider, due to its numerous benefits. It is a person-centred approach to disability, being more positive in allowing one to contribute to the community and thereby enhancing community inclusion.
Direct Employment offers flexibility, allowing people with disabilities to choose the support staff they prefer, helping them lead their own lives and make decisions for themselves. Direct Employment is better suited to cater for individual needs and lifestyles: it is, after all, an important concern for people with disabilities. Hence it allows for a more personalised approach. That in my opinion is better suited to meet individual support needs.
Standardisation of care for people with disabilities
I believe there is a need to rediscover how residents are genuine members of the community that the service provider of disability support services is caring for. Without this, policies will develop in favour of standardised practices that ignore the differences and individuality of each person who has a disability living in shared supported housing.
Most people with disabilities are highly individual, not unlike the rest of humanity. And indeed it is from this individuality that life becomes extremely complex. So, when people with disabilities are recognised for their individuality and diverse needs then it becomes apparent what treatments and supports they require. And it should become evident when they do not need treatment just “presence”, friendly presence. That then is the moment when due respect is needed.
People-centred planning must work in conjunction with empathy. And empathy is only truly founded through finding and understanding a person’s goals in life.
I have always done what is needed to be done, and I only wish to keep bringing to light the individualism of people with disabilities.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, and additionally taking on the role as a ghost writer as well, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness.