Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Friday, 25 January 2013 9:18:49 AM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

My son (15) has Autism and mild intellectual disability due to premature birth. We have spent the past 15 years trying to work out what we can do to help our son. It has consumed my time (I also work full time). Our G.P. was not aware of what was available for disability kids when we needed early intervention. Mainstream teachers are not trained to deal with disability appropriately so our only option for schooling was Special School. After wasting time waiting on the public waitlists for a psychologist and then spending over $2000 on various private psychologists finally was diagnosed with Autism at the age of 11. This diagnosis helped us immensely but we felt terrible for the 11 years previous when we punished him for not behaving and melting down in public. If the Austin hospital had diagnosed him at 4 when he was first assessed his Autism could have been addressed and I believe we could have improved behaviours that we are still dealing with now. Early intervention is critical. More than anything else that is where we have been let down. We received four hours a week. I went back to work early so I could pay for Speech, physio and Occupational Therapies. We are not rich and we were spending more than $12000 a year on therapies and the fact that we were both working meant we got no family tax benefit. I don’t want handouts but it hurts when governments announce assistance for kids with the same disability as your child but it is capped at 6 years old or it is capped at 13 years old. We have always had to pay full price for everything. Now my husband has been retrenched and we are over 50years old and I am still working full time because we still have to pay for this damn therapies because if I stop them might not progress any more and I can’t risk that. I just want someone to tell me what will and wont work, I’m tired of leading the pack through the fog. What’s the point in going to experts who don’t have the answers.

The main features of the NDIS that will make a difference to the community are:

• People with a disability can plan their lives and pursue their goals and dreams,
• Access to reliable information about support options,
• Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Life-skills,
• Positive behaviour support and psychological services

I support the introduction of the NDIS.

Selfishly because I hope it will help our family. But also because the whole community has become very self indulgent. Our democratic system encourages us to look at our personal needs and wants when we vote, not what is best for the collective whole. Our Capitalist system encourages us to place an enormous value on money, the

• paper, not what it can do for us. Most people who are not touched by Disability would rather have a new television than look at a person with disability in the eye and say yes I will do without a small amount regularly to help. Disability is just one area that is broken in our living structure but it is an important one. When people voted for Kevin Rudd we made a statement that economics was not the be all and end all. Unfortunately Australians have forgotten their resolve with this and they seem to want money money money again. I don’t want you to break treasury’s bank, good economics is how a country runs well, but in my household I manage the budget, I work full time, and I just prioritise so we spend money on what is necessary. Therapies for get priority over dinners out (including take away). It’s not that hard and as a wealthy country we can afford whatever it takes.

I agree for my submission to be made public

Regards,

Ms Sandra Findlay