Submission to the NDS request for input on their outcomes measurement for people with disability discussion paper Spinal Cord Injuries Australia 1 Jennifer Street Little Bay NSW 2036 Phone: 02 9661 8855 www.scia.org.au Contact: Sean Lomas [email protected] Phone: 02 8347 3008 Page 1
Introduction Spinal Cord Injuries Australia (SCIA) was formed in 1967 by a group of young men with spinal cord injuries who wanted to change the world. With a determination to become more independent they set about creating their own organisation, demanding that they be able to live lives no different from anyone else. Over forty years later SCIA is a thriving member‐based social enterprise, with a majority of people with a disability amongst its staff and directors. SCIA’s focus is to get people ‘back on track’ following a spinal cord injury—finding the solutions to obstacles that may arise and providing support to ensure people with a spinal cord injury remain actively involved in personal, social and vocational activities. SCIA’s services encompass all of life, from hospital to home to workplace, and the organisation strives to develop programs to educate and support the SCI community. SCIA works tirelessly to assist in the elimination of barriers that prevent social inclusion for people with a spinal cord injury—ensuring that the society in which we live is fully accessible to everybody. Submission response statement The response that will be provided to this paper will be of a discursive nature. We will not delve into the specific natures of outcomes through the proposal of alternate tables and measures. We wish to establish recognition of the changing face of disability services and supports and how a new level of discussion and involvement with clients should not be limited by standardised outcome measures. Page 2
Spinal Cord Injuries Australia response: Defining outcomes for individuals with a disability will always be problematic. There are many different outcomes that can be measured such as physical development, increased mobility, better mental health etc. We certainly recognise that, as with all funding and supports, you need to know how affective the support is or how adequate the funding package is. A drive to measure outcomes needs to have at its heart recognition of the unique nature of the benefit people can experience through their services and supports. Ten people all with the same level of disability may experience 50 different outcomes when experiencing exactly the same service or support; life doesn’t seem to fit into the construct of a standardised outcome measure. If we seek to construct a standardised outcome measure, the most obvious choice, we run the risk of placing emphasis on certain outcomes over others as logically, any outcome measure cannot have all the potential outcomes within it. If we were to limit outcome measures by narrowing the scope of outcomes the outcome would probably reflect an end aim such as accessing employment yet that simple outcome measure may not recognise the growth in the individual that takes them one step closer to employment or a better quality of life. We think that when there is a need to define outcomes they should be defined in the clients own words. While this may sound a very expansive idea and certainly could prove unwieldy to quantify we should remember that the new paradigm for service delivery is not about application of services it’s about the creation of what people need through flexible person centred packages. A simple recording of what clients got out of a service or how money supported them to achieve things they had always wanted to is a real outcome. This idea is supported through a report from the UK called ‘Choice and Control for all’ by Groundswell involving Helen Sanderson inferred that maybe we could gain outcome measures through client reviews. We could interview the clients and see how they felt things were going, whether any aims they had were adequately addressed or progress made towards them. This would potentially support a measurement of outcomes in the clients own words. Another UK report called ‘Putting power in people’s hands – learning from the world’s best public services’ compiled by the Cabinet Office, hints that there is a universal understanding of what an outcome is however that outcome should be defined through an ongoing dialogue with those receiving the service and indeed should be balanced against greater societal outcomes. This same report talks about the role of prevention in service delivery to bring about better outcomes for individuals. What this means is rapid access to services and a continuous process of ongoing conversation with your clients can lead to them needing less service from the provider. Under traditional outcome measures where Page 3
the end aim is the focus there would be no way of measuring this decrease in access of services as a positive. Yet this may lead to greater financial efficiencies and more life opportunities for the individual. Is the role of an outcome measure to count throughput in service or development and empowerment of the individual here? Surely the best service is the one that works to empower the people it serves to the degree that the provider becomes largely redundant? Obviously there are services that this can never be the case however the point stands for some. We should also look at whether there is the possibility that standardised outcome measures can be used as an excuse for no longer listening to the specifics of client needs where they are not measurable. The whole purpose of an outcome measure is to check both internally and externally the quality and the applicability of services you are providing to an individual. If there is little benefit to an organisation in going the extra mile to satisfy a client and bring great benefit to them would this necessarily happen. Much as the case with the Australian Government’s ‘myschools’ website we see an over emphasis on satisfying the specific criteria for evaluation at the detriment to students who may bring down the Schools average score and thus potentially affect funding. Sadly this included many children with a disability who went from being included in Schools to being an outcome measure liability. Way forward We believe that there is fair argument to support a greater emphasis being placed on a robust set of policed standards that will ensure that individual reaching services will receive a decent level of service. Couple a set of robust standards with the establishment of a provider/client dialogue process that establishes wants/desires and achievable results and we may start to de‐link the power of the outcome into the reality of the individual. Recognising the requirement to account for funds spent there is the possibility that rather than produce ticks on tables to show progress, a quality and outcome check could be developed whereby several clients per provider could be interviewed and share the experiences of working with the provider. This approach is largely reflected through the social return on investment methodology that does not seek to define outcomes rather quantifies the experience of the individual receiving the service. This is not a static approach with a recognition that experiences change over time as do both the real outcome and a perceived outcome. This method is being used by us to examine how we provide benefit to our clients. Lastly there should be a measure placed on society as a whole that we can judge clients, in their own words and experiences, against. It is a brave and mature society that seeks to formally measure the exclusive nature of the community and rather than seeks to bring the individual with a disability into the environment of the Page 4
exclusive community and support them to cope, works equally to bring society into the true realms of inclusion. Thank you for the opportunity to provide feedback. Should you have further questions we are more than happy to assist. Kind regards Sean Lomas Spinal Cord Injuries Australia 20/04/12 Page 5