At 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