A glimmer of hope at last?

After decades of struggle for even a semblance of social justice, some 800,000 unpaid primary caregivers (Carers) of Australians with severe and profound dependent disability, are today cautiously optimistic that significant changes to the funding of disability services across the nation have been moved one step closer.

This follows the release, on 28 February, of a long-awaited draft report and recommendations by the Productivity Commission into the urgent need for substantial improvements to disability care and support funding across Australia. According to the Commission's media release

The draft report - Disability Care and Support - identifies the current disability support system as underfunded, unfair, fragmented, and inefficient. It gives people with a disability little choice and no certainty that they will get the support they need.

After endless years of determined effort against frustrating and exhausting bureaucratic and political gamesmanship over Federal and State disability funding, and seeming indifference to the worsening plight of this cohort of now ageing parent-carers, a glimmer of hope has sprung up in the tormented hearts and minds of these selfless Australians that 'things might get better now'. Tragically, the Commission's Report and recommendations have come too late for those marginalised and burnt out family Carers who, seeing only a future life for their adult children with disability tormented by indifference, neglect, ill-treatment and inappropriate accommodation when they could no longer care for them, ended the lives of their dependent loved ones, and then their own.

They are also too late to fix the broken families and the disabling depression forced upon hundreds if not thousands of Carers driven to despair by the bureaucratic and political indifference towards their plight, and the resultant lack of compassionate care and respite for Carers.

Despite the fact that one-in-five Australian families include a relative with some degree of disabling condition (20% of the Australian population), the people who provide around-the-clock personal care and special accommodation facilities in their family home for the most dependent in our midst are, for the majority of us, largely invisible. Precluded from participating in the paid workforce because of their ill-fated social role, the majority of these selfless unpaid Carers are forced into a life of economic hardship and deprivation, becoming isolated in their homes and largely marginalised from mainstream society.

In all, there are some 2.6million family Carers in Australia, the majority providing care and accommodation for family members with various degree of handicap or disability. Latest official estimates put the value of their unpaid labour and support at saving taxpayers $42 billion per year.

Some 70% of family Carers are women who provide 93% of the personal care and special accommodation needs of those for whom they care. This is the result of the closure of the limited number of publicly-funded, purpose-built special facilities for people with high-dependence needs by the various State and Territory governments ...'de-instutionalisation'. The sale of these former State-run facilities - 'privatisation' - and the gradual abandonment by governments of their responsibility to provide ANY future supported accommodation facilities (arguing instead for 'normalisation' and 'community care') forced the economic and social costs back

onto families and communities (cost shifting), regardless of their capacity to pay or cope with such a difficult role, given the extremely limited amount of poor quality, bureaucraticly-controlled, for-profit and not-for-profit assistance on offer to them.

So much for the "nanny state" ideology put about by the anti-social, anti-democratic ideologues in the upper ranks of the right-wing think tanks, big business councils, political parties and sections of academe.

However even with this 'glimmer of hope', the bureaucratic-political nightmare appears to be far from over, with 'interested parties and individuals .. encouraged to provide feedback on the Commissions's draft proposals' either by further submissions or attending public hearings (capital cities only) in April. The final report will then be prepared and forwarded to the Federal Government by 31 July, 2011.

Key recommendations (thus far) include the establishment of two schemes to address the flaws, a National Disability Insurance Scheme similar to Medicare, in that all Australians would know that if they or their family acquired a significant disability they would have a properly financed and cohesive system to support them. A second much smaller scheme would cover people's lifetime care and support needs if they acquired a catastrophic injury from any accident: this scheme would be based on widening and strengthening existing state and territory schemes.

The funding arrangements for the scheme most preferred by the members of the three person Commission would be via direct payments from consolidated revenue into a national Disability Insurance Premium Fund. Overseeing all this will be a (new) National Disability Insurance Agency.

Commencing in 'early 2014', the scheme would initially cover all new cases of significant disability and some of the groups most disadvantaged by current arrangements, such as

• Children under 5 with substantial core activity limitations

• Select groups for whom early intervention pilot programs look promising

• People who are now cared for by ageing Carers

• People who have been inappropriately placed in nursing homes

Thus, 'over the period from 2015-2018 the scheme would progressively expand to cover all relevant people with a disability.'

Yet a degree of nervousness pervades many of the households of Australians with disability, a nervousness driven by the often complex issues impacting people with disability and their families, and the pervasive focus on 'efficiencies' and the Orwellian bureaucratic language employed in the management (control) of people with disability and their families.

For instance the authors of the Report have recommended that the Disability Support Pension should be outside the NDIS. Covering some 793,000 people as at June 2010, the Commissioners argue that 'There are grounds for (further) reform of the Disability Support Pension, given that its design can significantly undermine the NDIS's goals of better economic, employment and independence outcomes for people with a disability."

The Report continues ...

Reforms would aim to encourage the view that the norm for many people should not be the long-term use of the Disability Support Pension (unlike the current 'until death or aged pension us do part'). Those changes would be mainly oriented to people with typically non-permanent conditions, like anxiety and depression, and at people who could have much higher hopes for employment participation (for example, those with sensory impairments or mild intellectual disabilities). Some policy measures could include additional payments for people to work, targeted rehabilitation, employer support, measures to encourage people to get even a small foothold into work (even if just a few hours a week), and temporary rather than effectively permanent entry to the Disability Support Pension for those with reasonable prospects of employment (with periodic re-assessments).

All perfectly rational and reasonable-sounding, particularly when augmented with a few 'flexibles', 'consumer choice' and 'alternative options' that would enable people to 'exercise power'. However given the epidemic of mass un-employment and under-employment adversely impacting the Rich Countries of the West, including Australia, the reluctance and failure of Corporate Australia – including governments - to employ significant numbers of people with disability, and the financial inability of many small to medium-sized companies to do so, the prospects for people on the Disability Support Pension and full-time Carers wishing to return to or enter the paid workforce

to secure well-paid employment and financial/economic security are severely proscribed, by the 'strategic initiatives' of the globally dominant Neo-Liberal or Economic Rationalist agenda.

John Foster is a retired former HR practitioner and university Tutor and community activist with an interest in politico-economic relations and social justice.