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Without reprieve

By Jean Tops - posted Monday, 17 September 2007

What kind of a nation are we, when we close our eyes to the appalling government neglect of providing care and support to our most vulnerable citizens. Critical among the forgotten, are people with severe or profound disabilities and the families who provide more than 92 per cent of all their accommodation and personal care needs.

In the lead up to the coming federal election it is time to ask, “Who among us cares that the dominant political parties have no disability or unpaid family carer policies at all?”

The scramble by high profile sectors of our society for a slice of the $17 billion budget surplus is loud and organised, and overshadows the marginalised and oppressed. Politicians and other reformists ignore entirely the fact that a stand-off is raging between the states and territories (responsible for delivery of disability services) and the federal government, because neither can agree on increased funding for the growing list of un-met needs for disability services.


Across the nation, more than 2.6 million ordinary families struggle to balance family, work and caring!

Hardest hit among them are the families providing full time care for sons, daughters, partners and siblings, who by accident of birth, catastrophic event or illness, are reliant upon others for their daily living needs. The staggering truth is that there are 706,800 persons with a severe or profound disability aged less than 65 years in a struggle for existence, because governments at best provide an ad hoc system of care services and at worst deliberately neglect them.

The system of disability services is divided on age-based grounds, with aged care a federal responsibility and disability managed by the states under the Commonwealth, State and Territories Disability agreement (CSTDA). This five-year agreement regime commenced under Labor governments in 1992 as a means of stopping the overlap of services between jurisdictions.

Its chequered history has seen the “blame game” between states and federal government delay the signing of the CSTDA, a year past its use-by date on most occasions. The fourth of such agreements, due for signing by July 1, 2007, now languishes in a “stand-off” over who is responsible for funding increased services to meet the worsening accommodation crisis that now exists.

The current CSTDA provides, for just 33,700 of the 706,800 people with a severe or profound disability, an accommodation support service: less than 5 per cent of the potential population. The system relies on an ad hoc state-by-state contribution of funds to which the commonwealth contributes about a further 20 per cent. This ungainly mix provided a national purse of $3.6 billion in 2005-2006 and is the source of the squabble raging over unmet needs funding today.

By contrast the aged care system provides more than 204,000 beds and intensive support packages with a national budget of about $8 billion, of which more than $7 billion is directed solely by the federal government to the aged care accommodation and support system. Aged care is funded under a population-based benchmark model that now funds 108 beds/packages per 1,000 of the total population aged over 70. No such system exists in disability services and family carers are demanding to know why.


The myth that unpaid family caring is a noble and appreciated vocation in life for those families saddled with this burden unaided must be exposed. If decision-makers are to look with open eyes at the failed disability support system they must look at what has become of the sham of “community inclusion” rhetoric and expose it for what it is: a contrived means for senior bureaucrats and government ministers to “opt out of responsibility” for our most vulnerable citizens.

“Community inclusion” is a euphemism for restricting the options available to people with disabilities in order to coerce families into maintaining their free care role.

Through their own statistics, the federal government acknowledges that caring families contribute in excess of $32 billion a year to the national economic bottom line. All governments have a vested interest in offering poor quality services to people with disabilities: unpaid family-provided personal care and cost free accommodation services is a cash cow for government at all levels (a single group home bed costs taxpayers on average $85,000 a year).

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About the Author

Jean Tops is Founder and President of the Gippsland Carers Association Inc. She is the mother and primary carer for her 42 year old daughter Moya - who is deaf-blind, intellectually disabled and diabetic, as a result of the Rubella virus. Neither Moya nor Jean has any choice in this matter!

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