Re-conceptualizing disability and assistive technology : Australian consumers driving policy change

For people living with a disability, enablers such as assistive technologies, environmental modifications and personal care can make the difference between living fully and merely existing. This article is written from the standpoints of people with disabilities and professionals in one Australian State who found their government and service system to be a constraining rather than an enabling force. It presents two key components of policy and practice change in the area of assistive technology: challenging understandings of disability, assistive technology, and the desired life outcomes that assistive technology contributes to; and building a public evidence base through consumer-focussed research. In short, government funding of assistive technology needs to move beyond a limited focus on functional needs and take responsibility for fully equipping people to live the lives they aspire to.

Straddling the pathway from paediatrician to mainstream health care : transition issues experienced in disability care

Objective: To identify the strengths and limitations of health care and related services provided to young adults with a disability during the period of transition from the care of a paediatrician to the mainstream health system.
Design: A descriptive design was used to address the study objectives.
Setting: Barwon and south-western region of Victoria.
Subjects: Twelve focus group discussions, with young adults with a disability, carers of young adults with a disability and health care service providers. Each focus group involved eight to 10 participants.
Results: The findings revealed a number of problems with the transition period. All participants acknowledged the supportive, coordinating role of the paediatrician. In the absence of this type of role, carers felt they lacked the knowledge and support to manage the adolescent with a disability. Communication problems between all service providers were identified as being problematical. The general lack of continuity of care between providers made it difficult for individuals to negotiate the transition period and increased the burden of care on carers.
Conclusion: There is a need for policy makers to address these transition problems and develop appropriate services that improve the situation for young adults with a disability and their carers.
What is already known: It is well documented that the transition period from paediatrician to adult health care services is problematic for the young adult with a disability and their carer. The difficulties experienced are attributed to poor communication between service providers and a lack of continuity of care.
What does this study add: This study provides insights from a number of different consumer and health care professionals' perspectives. The findings identify service delivery gaps and a need to develop health care services that could assist the young adult with the disability negotiate this transition from the paediatric services to mainstream health care services in rural and regional settings in Victoria.

Educational enrolment of students with a disability in New South Wales and Victoria

The extent to which legislation and special education policy have impacted on the nature of the educational enrolment of students with a disability in Australia has not been clearly addressed. Although there are no detailed and systematic national data on the enrolment of students with a disability in inclusive settings, special classes and special schools in Australia, some broad trends are apparent. The legislative background to these trends is discussed. As might be expected, there are variations in the nature of the educational enrolment of students with a disability across the states and territories of Australia. Enrolment trends in the two most populous states, New South Wales and Victoria, are examined and discussed within the context of their respective special education policies, disability discrimination legislation, and educational precedent.

Quality of life of Australian family carers : implications for research, policy and practice

Abstract As part of an international,multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean
age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.

Experiences of disability consumer-directed care users in Australia : results from a longitudinal qualitative study

The rapidly growing body of literature suggests that Consumer-directed Care (CDC) has the potential to empower consumers and improve the flexibility and quality of care. However, reports highlighting quality and risk concerns associated with CDC focusing on a longer time frame have been few. This paper presents the findings from a qualitative longitudinal evaluation of an Australian CDC programme. Focusing on the period between 2003 and 2008, it reports on the experiences of 12 families caring for a dependent family member. It is based on two external evaluations completed 6 and 36 months after enrolment, and one internal evaluation completed 48 months after enrolment. The findings were triangulated with internal memos, reports and minutes of meetings, as well as with the theoretical literature. The study demonstrates that CDC harbours considerable benefits for people with disabilities and their carers. However, the study also suggests that, over time, carers may experience an increased sense of isolation and lack of support as a result of their involvement in the CDC programme. The paper argues that the development of safeguards addressing these weaknesses is crucial for the sustainability of CDC programmes in contexts where risk cannot be simply transferred onto consumers.

Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context.

Defining and measuring the outcomes of inclusive community for people with disability, their families and the communities with whom they engage

This paper explores the meaning of ‘inclusive community’ as understood by a major disability service provider in Victoria, Australia. Scope is a major non government agency with 1300 staff, a $50M annual budget and over 4500 clients. The recent adoption of a new Strategic plan for the organisation has focused significant attention on the priority area of building welcoming and inclusive communities. Given this mandate, the organisation has begun research to define and measure outcomes for people with a disability, their families, and the communities with whom they engage, as a result of increased community inclusion. This paper reviews literature on outcomes definition relevant to this task and suggests that outcome measures to date, especially within the field of disability, have offered a set of outcomes that are too limited in their aspiration and breadth. It has been the experience within Scope that people with a disability, including people with intellectual, multiple and complex disabilities, aspire to and experience outcomes across a far broader range of life domains than is currently captured in either existing disability outcome measures or in government policies that frame service delivery. As a result, the paper introduces an emerging outcomes framework which seeks to define outcomes across a range of citizenship domains.

Use of drugs to manage the behaviour of individuals with intellectual disability

Provides a detailed description and analysis over time of the use of medication to manage the behaviour of individuals with intellectual disability. Drug use was extensive and reasons provided were commonly outside those permitted by legislation. The findings enabled critical appraisal of current monitoring procedures and recommendations regarding policy and practice.

The equipping inclusion studies : assistive technology use and outcomes in Victoria ; key findings and policy implications, study 1 - the equipment study, study 2 - the economic study

Approximately one in five of the Australian population lives with disability (AIHW 2006a; ABS 2003). Of these, almost 1.9 million rely on assistive technologies to live independently (Hobbs, Close, Downing, Reynolds & Walker 2009).

Assistive Technology (AT) is defined as,

‘any device, system or design, whether acquired commercially or off the shelf, modified or customised, that allows an individual to perform a task that they would otherwise be unable to do, or increase the ease and safety with which a task can be performed’ (Independent Living Centres Australia n.d).

‘Assistive Technology solutions’ have been defined as entailing a combination of devices (aids and equipment), environmental modifications (both in the home and outside of it), and personal care (paid and unpaid) (Assistive Technology Collaboration n.d).

Despite a large number of Australians relying on AT, there is little data available about life for these Australians, the extent of AT use, or unmet need for AT. Existing research in Australia suggests that aids and equipment provision in Australia is ‘fragmented’ across a plethora of government and non government programs (AIHW 2006a:35). In Victoria, one of the prime sources of government funding for AT is the Victorian Aids and Equipment Program (VAEP) which is a subsidy program for the purchase of aids and equipment, home and vehicle modifications for people with permanent or long term disability. Recent research suggests that waiting times for accessing equipment through the VAEP are high, as is the cost burden to applicants (Wilson, Wong & Goodridge 2006). In addition, there appears to be a substantial level of unmet need (KPMG 2007).

Additionally, there is a paucity of literature around the economic evaluation of AT interventions and solution packages, resulting in little evidence of their cost-effectiveness credentials.

The equipping inclusion studies : assistive technology use and outcomes in Victoria ; key findings and policy recommendations

Approximately one in five of the Australian population lives with disability (AIHW 2006a; ABS 2003). Of these, almost 1.9 million rely on assistive technologies to live independently (Hobbs, Close, Downing, Reynolds & Walker 2009).

Assistive Technology (AT) is defined as,

‘any device, system or design, whether acquired commercially or off the shelf, modified or customised, that allows an individual to perform a task that they would otherwise be unable to do, or increase the ease and safety with which a task can be performed’ (Independent Living Centres Australia n.d).

‘Assistive Technology solutions’ have been defined as entailing a combination of devices (aids and equipment), environmental modifications (both in the home and outside of it), and personal care (paid and unpaid) (Assistive Technology Collaboration n.d).

Despite a large number of Australians relying on AT, there is little data available about life for these Australians, the extent of AT use, or unmet need for AT. Existing research in Australia suggests that aids and equipment provision in Australia is ‘fragmented’ across a plethora of government and non government programs (AIHW 2006a:35). In Victoria, one of the prime sources of government funding for AT is the Victorian Aids and Equipment Program (VAEP) which is a subsidy program for the purchase of aids and equipment, home and vehicle modifications for people with permanent or long term disability. Recent research suggests that waiting times for accessing equipment through the VAEP are high, as is the cost burden to applicants (Wilson, Wong & Goodridge 2006). In addition, there appears to be a substantial level of unmet need (KPMG 2007).

Additionally, there is a paucity of literature around the economic evaluation of AT interventions and solution packages, resulting in little evidence of their cost-effectiveness credentials.