The creation of Disability Care and the heightened attention for the social inclusion and needs of people with a disability within Australia will have profound long term positive impacts, but the unfortunate truth is the ‘host of problems’ in group homes described in The Age (202) on 29 July 2013 are all too common across the sector – not just at the featured home run by Yooralla.
Half of all disability expenditure is on accommodation and most of this is on group homes. In Victoria alone there are more than 900 group homes that each support 4-6 residents with intellectual disability. As it rolls out Disability Care will enable a more diverse range of options but some form of group home is likely to remain the dominant model for some time, particularly for people with more severe and profound intellectual disability. It is this group who are likely to have to continue to pool support funds and share accommodation with others.
Undoubtedly quality of life outcome for residents in group homes, in terms of social connections, engagement and participation, are better than cluster type housing or traditional institutions. But not all group homes consistently deliver high quality support. Outcomes vary enormously within and between services; in some group homes outcomes are so compromised by poor staff practices that they are similar to those found in better small institutions.
A La Trobe study published last year in a leading US journal (Bigby et al., 2012) found for example, the culture of some group homes meant residents were regarded as ‘other’ ‘childlike’ and ‘not quite human’; routines and decisions were centred around staff needs rather than residents, and staff were focussed on doing things for residents rather than with them. Looking after the house and simple presence in the community are prioritised rather than engaging residents in domestic tasks, or supporting them to be known, or to participate in activities the community.
Other research from overseas, and a recent La Trobe study of ‘good group homes’ in Victoria demonstrates however what is possible - that it is not the model but importantly, the implementation that is flawed. There are a few good examples in Victoria of a higher quality of life, where people with intellectual disability are regarded with respect and dignity, are engaged in everyday tasks, known in the community and play valued roles as volunteers or run micro businesses.
People with more severe intellectual disability need support to exercise their rights. For this group, the exercise of rights and quality of life outcomes are inextricably connected to staff practices and particularly nuanced, manifesting in different ways from those for people with mild intellectual disability. People with severe and profound intellectual disability find it difficult to act independently. They are reliant on staff to facilitate and interpret their communication, identify their preferences, generate opportunities for new experiences and participation, and support them to successfully engage in meaningful activities and relationships.
Unequivocally good staff support is linked to good outcomes for residents in group homes. The ‘moment of truth’ in terms of residents quality of life lies in staff practices – how staff communicate, interact and provide assistance. There is particularly strong evidence about a person centred approach called Active Support developed by Jim Mansell and Julie Beadle-Brown. It is an evidence-based practice whereby staff provide just the right amount of assistance to enable service users to successfully take part in meaningful activities and social relationships, irrespective of their degree of intellectual disability or physical impairments.
Staff who use Active Support see that every moment has potential for a person to be engaged; provide little amounts of assistance often; provide graded assistance that is just enough of the right kind to enable a person to succeed in doing all or part of a task; provide opportunities for residents to exercise choice and control over many aspects of their lives including all those little everyday things that are so important to everyone. Active support is also the foundation for more specialist strategies to support people with challenging behaviour.
Active Support has been adopted by many disability services across Australia, and sits in policy manuals. But it has been hard to implement and embed in services (Mansell et al., 2013). Many things that influence the practice of staff are behind the scenes. These include: an organisation’s values, procedures and practices, the commitment of senior managers, the method of monitoring staff practice, arrangements for practice leadership, regularity and focus of supervision and team meetings, job descriptions, recruitment processes, induction and processes for translating high level values into expectations and guidance for practice.
Current ARC funded research at La Trobe with nine industry partners from three states is tracking staff practices and the implementation of Active Support over five years to uncover the organisational factors that make a difference to staff practice; to test the proposition that the more coherent and focused on resident quality of life outcomes these organisational aspects are, the better staff practices will be. Our pilot findings have demonstrated a relationship between practice leadership and Active Support. Yooralla is one of the partners in this research, who in collaboration with researchers and eight other organisations are investing in finding systematic solutions to poor quality services.
If the Disability Care promise of more inclusive lives for people with disability is to be realized additional funding alone will not do it – attention must be paid to the quality of staff support and practice leadership across the entire sector. This is complex and difficult work which can be informed by rigorous research evidence. There are no quick fix solutions but building the expectation of demonstrated use of Active Support into service standards is a critical way of focusing attention on what will make a difference to resident outcomes.
Professor Christine Bigby, Research Leader Living with Disability, School of Allied Health, La Trobe University
Bigby, C., Knox, M., Beadle-Brown, J., Clement, T., Mansell., J (2012). Uncovering dimensions of informal culture in underperforming group homes for people with severe intellectual disabilities. Intellectual and Developmental Disabilities 50, 6, 452–467
Mansell., J., Beadle-Brown, J., & Bigby, C. (2013) Implementation of active support in Victoria, Australia: an exploratory study. Journal of Intellectual and Developmental Disabilities 38(1), 48–58