Culture Street

By Sophia Whitfield

For many Friday 26th October will come and go without much fanfare. The best thing about Friday will be that it heralds the start of the weekend. For those who are parents or carers of children and adults with disabilities and for people with disabilities, Friday marks a day when we all come together for DisabiliTea in support of the National Disability Insurance Scheme (NDIS).

Many will have heard references to the NDIS, but it will have had no particular significance to them. To our family and many just like ours it holds the answer to changes that will have a positive impact and indeed it is hoped will revolutionise the care of children and adults with disabilities in this country.

There are parents in the community who race their child to hospital and watch over them as they dance with death, not once, not twice, but too many times to remember them all. There is agony and heartbreak. Parents live their lives on an emotional rollercoaster as they watch their child pull out of a terrible sickness, only to see them plunge into the next one. Essential equipment is necessary to support an integrated life as well as constant care.

There are parent like this everywhere. I know many. Parent whose days are full of caring and organising care so other siblings can be given well deserved time.

Whilst a parent struggles with the daily care of a child with a disability they must also grapple with a broken and splintered system. There is no current streamline approach to ensuring care and assistance for a child with a disability. The system responds to crisis, but not to daily needs. A family in crisis will eventually receive help. Surely it would be better to support families before they reach crisis point?

One of the difficulties for parents caring for children and adults with severe disabilities is their employment. Often one parent must stay home to care or organise care.  In some cases both parents stay home. A few parents are able to secure part time work whilst other opt for running their own businesses to give them the flexibility necessary to care for a loved one with a disability.

Last year the Productivity Commission’s report acknowledged that the current system of support was inadequate. There are limited resources, waiting lists for equipment can be up to two years and there is little support at key transitioning points in people’s lives such as from children’s services to adult services.

Here are some comments from participants involved in the inquiry:

“The way funding is allocated is a joke. Submissions are sent in and if you are about to die or divorce or have a breakdown, you might get considered.” (Leonie Walker)

“It took over two years from when it became pretty clear I needed a motorized wheelchair to when I finally got one, and then yet longer to get transport training … “ (Samantha Peterson)

After the release of the Productivity Commission’s report all governments agreed with the recommendation to establish a National Disability Insurance Scheme (NDIS).

The proposed NDIS will be a national scheme that offers insurance to all Australians in the event that they acquire a significant disability. It is proposed that there will be no means test for receiving funded NDIS services. The Federal Government has begun the first stages of implementing the NDIS, but the scheme is not guaranteed, by any political party.

People with disabilities have loudly proclaimed their right to better funded services with more flexibility. They have been heard, but must keep maintaining pressure to make the NDIS a reality.

If you know someone hosting a DisabiliTea this Friday then show your support for the NDIS by sharing a cup of tea and making the NDIS real for every Australian.

 

 

 

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