By Charlotte King

A study has been released suggesting the pressures being faced by regional and rural families caring for a child with autism are greater than those in metropolitan areas. 

Carers and their families are fundamental to the quality of life for people living with autism, yet the far-reaching impact of this job can be overlooked.

When a family friend’s son was diagnosed with autism Professor Andrew Whitehouse offered them respite but it left him a changed man. 

“It changed my life,” he says. “I saw the family’s realisation that their child was developing differently to other kids, the difficulty they had in obtaining a diagnosis, their endless fight to receive the proper services, and the enduring love they had for their child.”

July 1, 2014 Dan Harrison

The minister responsible for the National Disability Insurance Scheme has urged families with concerns about how the scheme is operating to make their views known.

The results can be devastating. Not being able to keep up with the teasing banter that often takes place among groups of young people can make the social world a very daunting place for children with autism. Being at odds with their peer group can lead to social isolation, rejection, and a lack of the supportive friendships that can protect against bullying.

Families of children with autism say they have been short changed under the National Disability Insurance Scheme, with early intervention therapy provisions falling far below international best practice.

Participants in launch sites have been told they will received funding for less than six hours of therapy a week, less than a third of the recommended 20 hours.

Monika Dobek has been spending about $35,000 a year on 20 hours a week of evidence-based applied behaviour analysis therapy for her six-year-old daughter, Olivia, who was diagnosed with autism two years ago.

She was delighted when she was told Olivia would be eligible for funding under the NDIS in April but stunned to discover the money would only cover six hours of therapy a week.

Rick Morton, Social Affairs Reporter, The Australian, June 20, 2014

AUSTRALIA’S only politician who uses a wheelchair has written to the chairman of the national disability insurance scheme urging the board to listen more carefully to people who have a “lived experience” of disability.

South Australian Legislative Council member Kelly Vincent, who heads the Dignity for Disability Party, wrote to Bruce Bonyhady last week, highlighting the lack of people with disability involved in national forums relating to the landmark NDIS.

Dear Minister Andrews MP

I am writing to you about the mad bureaucracy in the NDIA, particularly in relation to the funding of transport associated with disability services.

In many instances, a disability service is either provided in a person's home or requires transport in order that a person can access the service. If the cost of transport is not included, then the service is simply not financially viable.