Submission to Productivity Commission
Inquiry into Long Term Disability Care and Support 

Arthritis Victoria
August 2010

Introduction
Arthritis Victoria is the peak consumer organisation for people with chronic musculoskeletal conditions, their carers, and their supporting communities within Victoria.  Our vision is the best possible musculoskeletal health and wellbeing for all Victorians. We seek to achieve this through training, research, information, policy and programs directed towards consumers, health professionals, policymakers and the broader community.  
Arthritis and musculoskeletal conditions are the most common cause of long-term disability in Australia, affecting 3% of the Australian population, and 14% of those with disability. Of these, 30% are unable to undertake, or need help with, self-care or mobility (AIHW 2008).  Despite this, Arthritis Victoria’s consumer research indicates that many people with arthritis-related disabilities have difficulty accessing disability services. This in turn limits the economic and social participation of people with arthritis-related disability and their families, and significantly impacts their quality of life.
Arthritis Victoria welcomes the Productivity Commission’s inquiry in to long-term disability care and support. We argue that the definition of disability needs to embrace the changing parameters of illness, injury and disability. 

Background
Many people with chronic musculoskeletal conditions experience moderate to severe impairments as a result of their conditions. Some conditions, such as osteoarthritis and osteoporosis, involve deterioration and increasing impairment as people age. Some conditions, however, such as rheumatoid arthritis and other inflammatory types of arthritis, are episodic as well; meaning that there are periods of time when people experience high levels of impairment during a ‘flare’ (where joints become severely inflamed and painful), while there are other periods of time when a condition is relatively stable. These episodes may exist within a framework of steady deterioration.
It is Arthritis Victoria’s view that the current disability service system within Australia in many instances fails to recognise the disability needs of people with arthritis and other chronic musculoskeletal conditions. We believe that this issue stems from the fact that an artificial distinction between chronic health conditions and disabilities has developed and endured within Australia over the past few decades, largely due to the fact that historically many chronic health conditions were associated with high levels of mortality.  This has meant that today many chronic health conditions, such as arthritis, are not perceived as being associated with a disability and, as a result, people in need do not qualify for disability services.
An underlying driver compounding this issue is the assumption that the costs of care for people with chronic health conditions are met through the health and medical system. But this is not entirely the case. Often people with chronic health conditions find they cannot access the services they need which are related to living in the community, rather than to their health needs specifically. They are not eligible for some disability services and the services they need are not available from medical services. An example of this from Arthritis Victoria’s consumer research is that some people with chronic musculoskeletal conditions do not fit the criteria of eligibility for aids and equipment from state-based services. The situation that arises is that many people with chronic musculoskeletal conditions ‘fall through the gaps’ and are required to self-fund disability-related needs. Combined with the high out-of-pocket health expenses related to managing a chronic musculoskeletal condition (it is estimated that people living with arthritis shoulder 61% of the total cost of managing the condition (Access Economics 2007)), many people experience increasing levels of socio-economic disadvantage and reduced quality of life.
Arthritis Victoria believes that recognition is required to understand that illness, injury and disability is a far more flexible state than what was thought in past decades. This now needs to be reflected in policies and services for people with disabilities related to chronic health conditions so that services enhance people’s own abilities and in turn facilitate a greater level of participation within society. We would strongly urge the Productivity Commission to recognise such attitudes towards chronic health conditions within the current inquiry. 

The Scheme
The most significant focus for Arthritis Victoria within the inquiry is around eligibility.
It is Arthritis Victoria’s position that any person with a disability should be eligible for the new scheme. We believe it should be the intent of the scheme that all persons with disability related support needs should be able to access the support they require to be active, engaged, productive and participating members of society. This view aligns with the UN Convention on the Rights of Persons with Disabilities ratified by Australia in 2008.
Arthritis Victoria supports a scheme that is based on need. We believe that such need should be judged across physical, intellectual and social impairment. Services should be coordinated rather than case managed and the emphasis should be on optimising people’s well-being.
While Arthritis Victoria would agree that those with the greatest impairment should be the greatest beneficiaries of such a scheme, it should not mean that those with lesser impairments are excluded. All people with needs should receive support proportional to their impairment. Thus those with the greatest impairment should be the greatest beneficiaries, but those with lesser impairment should also receive benefits according to their needs. This should minimise the transition from lower impairment to higher impairment where a condition is progressive and/or limit increased impairment due to a lack of intervention. 
Arthritis Victoria firmly believes that a national disability scheme should recognise those with episodic impairments. Such a scheme should be flexible in that people should be able to access care when they need it and at a level that their impairment requires at that time. 

Conclusion
Arthritis Victoria strongly supports reform of the current disability support system. We support a scheme that represents all people with a disability, including those with episodic needs. We believe that any disability system should recognise the flexible state of illness, injury and disability, and should ensure that people with chronic health conditions, such as arthritis, do not ‘fall through the gaps’.  Access to such a scheme would increase the economic and social participation of people with chronic health conditions and significantly enhance their quality of life.

References
AIHW (Australian Institute of Health and Welfare) 2008. Arthritis and osteoporosis in Australia 2008. Arthritis series no. 8. Cat. no. PHE 106. Canberra: AIHW.
Access Economics, 2007. Painful Realities: The economic impact of Arthritis in Australia in 2007

Contact details:

Geraldine McDonald 					Susannah Wallman
General Manager					Senior Policy Officer
Policy & Research Unit					Policy & Research Unit

Arthritis Victoria					Arthritis Victoria
PO Box 130 						PO Box 130
Caulfield South, VIC   3162				Caulfield South, VIC   3162