Tag Archives: carers

What do carers need? Don’t ask – you might be told

Is it just Australia that is unbelievably backward at coming to terms with people with disabilities and the family members who care for them?

Or do other countries assume you are not capable of identifying what can be done to improve the lives of family members with disabilities? As if your 24/7 experience doesn’t quite cut it in the search for evidence of what carers need?

The Australian Government and NGOs like to call us “carers” – most of us just refer to ourselves as mums, dads, grandparents, children etc.

Anyway, whatever they want to call us, the newish Australian Government has yet another Inquiry into carers underway. They were a bit shocked at the number of individual submissions they received (1600 + I’ve heard).

And now there is an online forum for those of us who want to take every opportunity to tell it like it is. It’s called Carers Virtual 2020.

Some of the comments on Carers 2020 are heart-rending in their eloquent description of what life is really like.

Other posts and comments have kept me giggling for a few days, although their analyses of what needs to happen are bitingly accurate.

And some aim to turn the whole disability/caring paradigm inside out and make it work by investing in people with disabilities and the families who support them.

You might be amazed to know that people caring for family members with disablity:

  • Want control over their lives
  • Are disgusted that they have to beg for equipment from charities
  • Know how to help their adult children live fulfilling lives
  • Need targeted supports relevant to life cycle changes
  • Expect investment in their children with disabilties while young to maximise their opportunity for full social and economic participation in adult life

In short, this inquiry – like every other carer inquiry – spells it out plain and simple that “carers” want the service providers, academic researchers, brokers, advocates, government agencies and everyone else making a living from Australia’s burgeoning “disability industry” to stop. Listen. Learn. And act based on what “carers” and the people they care for tell them is needed.

Too easy.  But I wonder if anything will change?

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Hope crosses the political divide

On 17 March 2008 at around 8:30pm the Australian Federal Parliament secured bipartisan support from members of the two major political parties (Australian Labor Party and Australian Liberal Party) to support a motion by the Member for Gilmore, Mrs Joanna Gash, to improve the services, support and care for Australians with disabilities and their families/carers.

This is the motion:

That the House [of Representatives]:

Calls on the Australian Parliament to adopt a bipartisan approach to improving the provision and delivery of disability support and care to Australians living with severe and permanent disability, their families and/or their carers;

Considers that for too long the ball of responsibility for the funding and delivery of disability support and care has been kicked between Federal and State governments and that game has to end; and

Considers that the Federal Parliament must address the need for improved disability funding, support and services to see progress is continued beyond the individual terms of governments and is coordinated at such a level that intergovernmental disability service provision is clear, concise and indisputable.

Thank you to those politicians who initiated, debated and supported this motion in Parliament. Your support means much to many, many family carers of adults and children with disabilities.

The glaring discrepancy between the life choices of Australians in general, and those with a disability and their carers, is unbelievable. It is truly horrific that an affluent nation like Australia could choose to continue to be so oblivious to the circumstances its most vulnerable citizens are forced to endure.

As the motion implies, families caring for a person with a disability simply don’t care whether State, Federal or local politicians and government departments are responsible for support and service provision to people with disabilities and their carers.

We want national political recognition of the terrible problems that have arisen due to lack of government ownership of this important humanitarian and economic issue.

We want input into long-term, funded, targeted, functional solutions that meet our needs, not the agendas of a government department or disability advocate.

We trust that people with disabilities and their family carers will be invited to directly share their views, experiences, and proposed solutions to any Parliamentary groups, committees or drafting of legislation which may occur.

Baby steps, let’s keep it moving. Nothing will change unless we make it happen.

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