May 2013

Restoring hope, dignity and independence

Every Australian family is exposed to the possibility of their life being touched by disability, writes Tony Fitzgerald.

BY Tony Fitzgerald

In his Australia Day address in January this year, paralympian Kurt Fearnley made the following comments:

“living with any disability in Australia isn’t rosy compared to the rest of the world, even among other prosperous nations. If you have a disability in our country, you’re more likely to be unemployed, more likely to be living in poverty and more likely to be less educated than if you didn’t have that disability. In comparison to other economically rich nations that are members of the OECD, the statistics for Australia are damning”.

These are particularly confronting comments about the way in which people with a disability in our community are treated, or, at the very least, perceive they are treated.

The potential for disability to impact the life of anyone is non-discriminatory. Every Australian family is exposed to the possibility of their life being touched by disability. For those already living with that reality, overwhelmingly, their life is characterised by struggles with bureaucracy, relentless advocacy for services, tremendous physical and emotional strain, discrimination, grief for the life of hope and opportunity lost, pressure on relationships, and feelings of isolation and uncertainty about the future.

Those of us privileged to work with children with an intellectual disability and their families are fortunate to share a small part of the journey – to be challenged and inspired by our engagement with their story and to play a small part in teaching them skills for life. But for us, it is all very temporary and transitory. For the children and their families, however, their disability is forever and so too are the attendant struggles.

The impact of living with a child with an intellectual disability is not well understood. For many, their disability is often rare, and as such, falls outside established patterns of already limited funding for higher incidence disabilities. Costs associated with early intervention, aids and supports, equipment, respite, health care, education and, often times, the modification of family homes, rise relentlessly.

Programs of support that are available are either not well advertised or are often enmeshed in application protocols too complex for many families to access. Further, they are ad hoc or short-term. The result is that many families give up, their energy and hope exhausted, and their dignity and the dignity of their child trashed.

It is still somewhat unclear about the detail of how the National Disability Insurance Scheme (NDIS), now known as DisabilityCare will, in a tangible way, provide support for children, young people and their families and carers. The roll-out of trial sites around the country will answer some of these questions.

What is clear however, is that the principles underpinning DisabilityCare will, at the very least, restore those things taken from children, their carers and families and all people with disability – their hope, dignity and independence. It is at least a starting point, a platform for the kind of remediation that is long overdue people with a disability and their families and carers. It is a principled recognition of the need to restore respect for the dignity of those people most marginalised in our community, almost without exception, through no fault of their own.

By any standard, Australia is a wealthy country. However, increasingly we have allowed ourselves to be seduced by the fantasy of indulgence and, in the process, we have sacrificed some principles about the kind of society we choose to be.

Largely, we have been betrayed by our political leaders who have elected to adopt and espouse populist views about various marginalised groups in our community under various banners of productivity, efficiency, incentive, self-determination and so it goes on. There seems to be very little about justice, tolerance, compassion, dignity or hope.

In DisabilityCare we have an opportunity to resurrect hope and dignity for people with disability, and in doing so, elevate the tone of debate and restore the moral compass that navigates our future as a contemporary, tolerant, compassionate and just country.

Which of our political leaders are up for that challenge?

Tony Fitzgerald

Tony Fitzgerald is the Principal and CEO of Mater Dei School, Camden, which provides early intervention therapy services, education and residential programs for babies, children and young people with an intellectual disability or developmental delay.

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