Caregiver Support is enormous in homes around the country. Not only is Canada, but other countries such as Australia and the United States to list a few. So many families fill this important role of primary caregiver.
Caregivers spend a significant number of hours daily, weekly, monthly and yearly providing on-going care. As a result of providing specific and diverse levels and/or forms of care and/or assistance, or support structure which is necessary to helping positively influencing a survivor’s quality of life, there is a social and psychological impact on the individual caregiver, their families and society.
Some of the areas impacted are: caregiver strain, burn-out, personal mental and physical health challenges that occur with time, a loss of leisure time and person down time, reduced amount of time given toward other growing family members and relationships, employment challenges to list a few. A caregivers experience can be described as bidirectional. There are some positive outcomes at some level knowing what they are doing is important, while on the other hand there can be significant negative effects on a caregiver health in the long run.
In Canada alone Family Caregivers contribute an astounding $25 to 26 billion of unpaid labour to the health care system, providing care and assistance for immediate and extended family and friends who are in need of support because of age, illness or long term conditions. In a 2007 Pollara survey, 23 per cent of Canadians said they had cared for a family member or close friend with a serious health problem in the preceding 12 months, with 22 per cent of these people missing one or more months of work and 41 per cent using personal savings to survive financially while providing care. So how are our Australian counterparts fair…..
AUSTRALIA’S disability support system is inequitable, fractured, under-resourced and slowly collapsing under the weight of its own inadequacies, while sub-optimally consuming billions of dollars of taxpayers’ money each year.
Support in short supply for disabled
Good support is given to the few who receive lifetime care through no-fault accident schemes. A few others receive payouts after years of exhausting litigation. The rest - the majority of people with disabilities - are left to battle through a service system that purports to set priorities based on need but is in fact a lottery driven by crises. Such a system is indefensible.
Support is fragmented across program areas, multiple government departments and jurisdictions. Those seeking support, while grappling with their grief, quickly become exhausted as they fight their way through a maze, consisting of endless inefficient queues and paperwork at every step. There is too little planning as many ageing parent carers lives in fear of what will happen to their son or daughter when they die.
In the absence of adequate funding, waiting lists grow and responsibility for caring for people with disabilities is shuffled between commonwealth and state governments. Meanwhile, families, out of love and a sense of responsibility, provide support that Access Economics estimates would cost taxpayers $30.5 billion a year.
Labour force participation among people with disabilities of working age is two-thirds the national average and the unemployment rate twice the national average, while tens of thousands of carers are forced to abandon any thoughts of a career.
Last week the federal parliamentary committee of inquiry into better support for carers issued its long-awaited report. It is remarkable because it has given voice to thousands of family carers, who are close to breaking point; emotionally, psychologically, physically, socially and financially. As a nation, we cannot say we have not been warned.
However, in looking for new policy ideas from among the many heartfelt submissions, it is essential to seek sustainable long-term solutions; to distinguish between symptoms and causes of the dysfunction in the present system. It is therefore disappointing that the latest inquiry has chosen to weight its recommendations towards short-term adjustments and amendments to the existing policy framework.
When Australian governments took the enlightened step of closing the Dickensian institutions in which people with disabilities had been locked away, they failed to design, let alone establish, a modern support system that was sufficiently comprehensive and forward thinking.
Two decades or so later, the replacement of Australia’s welfare-based disability support system is long overdue. This opportunity to make a transformational shift is similar to the 1970s, when concerns about the health needs of Australians led to the introduction of the original Medibank scheme, and to the ’80s when concerns about an ageing population and adequate retirement incomes led to compulsory superannuation.
Last year a national disability insurance scheme, based on the principles of risk, opportunity, insurance and investment, was one of the “big ideas” adopted by the 2020 Summit. An NDIS would remove many of the inefficiencies in the present disability support system. It would be a win-win, automatically aligning the interests of people with disabilities, carers and the community. Early intervention, which reduces long-term costs, would become an investment. Carers would be recognised, supported and sustained in their role because of their importance in managing long-term scheme liabilities. Access to education, training, participation in the workforce and the community: such as in workers’ compensation schemes, would receive a high priority.
Since the 2020 Summit, something unprecedented in the disability sphere has begun happening. People with disabilities, carers, disability service providers, academics and advocates have started coming together. In one increasingly unified voice, they have begun calling for the introduction of a national insurance scheme, funded by some form of compulsory contribution levied across the entire community.
Brendan O’Reilly the recently retired head of the NSW department responsible for disability services, no longer constrained by his duties as a public servant, has added his voice to this proposal, suggesting that the cost “would be less than people might think”.
There are also signs of rare bipartisan political agreement emerging. The deputy chairwoman of the carers’ inquiry, West Australian Liberal MP Judi Moylan, last week publicly called for a detailed analysis of an NDIS, while the former Labor premier of NSW Morris Lemma has said that an NDIS is the only sustainable way forward.
Addressing the National Press Club recently, the federal Parliamentary Secretary for Disabilities, Bill Shorten, described the NDIS proposal as “a simple yet visionary and exciting idea”. As he said, a universal, compulsory no-fault insurance scheme that provides individualised, ongoing financial and case management support for anyone disabled at birth or as a result of catastrophic accident or chronic illness “would turn our system of disability services on its head”. Privately, others in government are also very supportive.
The NDIS framework would be national. The necessary reforms would be complex involving major changes to existing commonwealth-state arrangements, establishment of new governance structures, determination of eligibility criteria and benefits and examination of the interactions with health care and aged care services.
This idea however is too important and far reaching to be left just to governments, people with disabilities, carers and disability organisations. It needs everyone’s support. The NDIS would give essential security to all Australians because today, tomorrow or next week, you could suddenly be felled by a stroke, or develop multiple sclerosis or mental illness. Your teenage son could have an accident that leaves him severely brain damaged or quadriplegic. You or your daughter could give birth to a child who has autism, Down syndrome, cerebral palsy or other lifelong disabilities.
National insurance is the way forward because it recognises that disability, like anything else we now insure against, is a risk that can affect anyone, but will not affect everyone. The potential social and economic benefits from a NDIS, which would break down what Shorten has described as “the last practical barrier for civil rights in this country”, could be transformational.
The next crucial step is for all Australians to urge the federal Government, together with the states, to commission a detailed feasibility study of the national disability insurance scheme.
Bruce Bonyhady co-authored the submission to the 2020 summit on the NDIS and is chairman of Yooralla, Victoria’s largest disability service provider.
Source: The Australain by Bruce Bonyhady
May 07, 2009