Fund facts about living with disability

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Young adults with Down SyndromeAt the end of each day, one of our three adult sons will ask, 'What's on tomorrow?' They don't ask this lightly.  They have Down syndrome. Whether they participate in the community, go to work or remain at home depends on what funding we can access. For other families like ours the right funding can mean a new wheelchair or access to new treatment or training.

Basically, appropriate funding gives people with disability, their families and carers freedom and choice in how they participate in and contribute to our society.

Australia's current approach to disability services is crisis-driven and welfare-based. Our three sons have different types of funding. Our eldest, who has Down syndrome and autism, requires the most amount of support to access the community, yet receives the least amount of funding. These sorts of inconsistencies create challenging situations.

Most people in our society are free to make choices in regard to employment and recreation. However most people with disability are not. At the moment, funded support hours are provided by service providers who, in most cases, dictate the time and activity. For the person with disability it's not about how they would like to access work or participate in the community, it's about taking what they can get.

The inconsistency in the funding model means I need to be home to support our sons. I'm fortunate that my employer is 'carer friendly'. I'm able to work part time at home while providing support for our sons. But many individuals I know have been forced to retire from work to provide support for a son, daughter or partner.

These are some of the many reasons why we, and many other families like ours, support the introduction of the National Disability Insurance Scheme (NDIS). The proposed NDIS is intended to change the current funding model and will provide funding for essential care, support, therapy, aids, equipment, home modification, access to the community, education and training.

The NDIS has the potential to revolutionise the care and quality of life of persons with disability. It will help to give people with disability, their families and carers a choice in what works best for them as individuals and as a family. It will also abolish inequalities that currently exist for those without insurance.

Part of my work with the Australian Catholic Bishops Conference was to prepare a submission to the Productivity Commission on the NDIS. In the submission, the bishops agreed with the overall premise that the current system needed to be overhauled, and that individualised funding would provide more control and more choice to individuals and their families, and more accountability by service providers.

The benefits of the NDIS will be numerous.

It will offer greater choice in treatment, early intervention and equipment. Our friends have waited many years for a new wheelchair after their daughter outgrew hers. There isn't much dignity involved in squeezing into a wheelchair too small for a growing person.

There will be benefits for those with disabilities and their families who face marginalisation and lack of services in remote and rural areas, including remote Aboriginal communities. Distance is a huge barrier. Without appropriate services the person with disability is not given an opportunity to develop or participate in the community.

An additional crisis area is in the care and support provided by older parents in their home for adult children with disability. I have spoken to an 80-year-old woman who is still caring for her 60-year-old daughter with disability. The woman worries every day about what will happen to her daughter when she dies.

The NDIS has the potential to alleviate situations such as these.

It will also benefit young carers — under-25s who provide care to a family member or friend with an illness, disability, mental health issue, alcohol or drug problem, or who is frail-aged. Australia has 300,000 young carers, 150,000 under 18. Research indicates that, when inadequately supported, their own health and wellbeing can be seriously affected. The NDIS would give them a voice in decisions about funding and support.

One hoped for outcome of the NDIS will be to ensure the full and equal enjoyment of all human rights and fundamental freedoms for all people with disability, and promote respect for their inherent dignity. This inherent dignity needs to embrace all Australians. The Productivity Commission estimates that about 410,000 Australians have significant disabilities that require ongoing support, but only about 295,000 receive it.

The 2012-13 Federal Budget on 8 May will explain how the NDIS will be delivered and funded. Prime Minister Julia Gillard's championing of the scheme, and Opposition leader Tony Abbott's offer of bipartisan support, are greatly encouraging. Hopefully this bipartisan support continues and will move the NDIS a step forward.


Patricia MowbrayPatricia Mowbray is disability projects officer for the Australian Catholic Bishops Commission for Pastoral Life. Pictured: Patricia's son Pete enjoys some social time with World Youth Day visitors from France. 

 


Topic tags: Patricia Mowbray, disability support, down syndrome

 

 

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Existing comments

Patricia many thanks for your article. What a wonderful job you and your family do in caring for your sons. No amount of money will compensate (but it may help!!) for the care disabled folk receive in their families. God Bless You.
Rosemary Keenan | 18 April 2012


I admire your enthusiasm, Patricia and I hope that in twenty years time, you will not be bitter and disillusioned. I try to support a relative with a psychiatric disability. I wonder if you belong to one of the disability groups who, in their ignorance, try to exclude people with a psychiatric disability from their programs. Believe me I am not talking about a person with a psychological disorder, but about someone with a condition known to be caused by anatomical, physiological and neuro-chemical abnormalities of the brain, a condition somewhat bizarrely referred to as a "mental illness" I have seen glossy brochure after glossy brochure proclaiming triumphantly the promise of "Mental Health Plans" and I have seen my relative's care and treatment go from mediocre to abysmal. I have seen the sector taken over by highly functioning "consumers" with relatively low needs and well-meaning, but desk-bound, bureaucrats who appear to be afraid to stand up to them. I do sincerely admire and envy your enthusiasm. I hope that your trust is not betrayed.
Sheelah | 18 April 2012


My book club just discussed a book which had, as one of its principal characters someone with a mental disability. For me this character was crucial to the story. When I suggested to the group (women from a variety of backgrounds and a wide range of ages)that this young man was the most interesting character in the book, there was silence. I don't know what each woman was thinking, but it seemed sad to me that up to that point, nobody had thought about him as a character.
Margaret McDonald | 18 April 2012


I have a 12 month old grand-son who is paralysed from the chest down due to a tumour pressing on his spine when he was born. It is called neuroblastoma. Chemo has wiped out the tumour for the present. He needs a standing frame followed by a wheel chair. He has to wait until funding becomes available in the NSW health system. I can see that children outgrow their frames and wheel chairs. They cost thousands of dollars to buy. How do these items get recycled? I presume the NDIS will solve this problem
Alan Hamilton | 18 April 2012


To Sheela, while I sympthasise with the plight of your relative with a psychiatric disability, I am very concerned about any attempt to draw a neat line between a psychiatric and a psychological disability and distinguishing whether it's a neuro-chemical disorder or not. This is a very grey area and I don't think even top psychiatrists know whether certain disorders are purely biological, or whether there are degrees of environmental/experiential factors involved. The bottom line is, the emphasis you place on the origin tends to stigmatise the whole mental health issue and tempts people to make moral judgements about people's situations they have no right or reason to delve into. There is a similar stigma surrounding HIV sufferers, where many are quick to distinguish between those who acquired the virus through homosexual sex, heterosexual sex, or through a flawed blood transfusion or other accident. A disability is a disability. Full stop.
AURELIUS | 21 April 2012


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