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, 18 January 2013 9:02:50 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.

The access to funding seems really unfair. We have access to the $12K FACSIA funding for our son. Our son has very mild PDD-NOS on the spectrum. I don’t think we will ever use up the money as he doesn’t seem to need $12K worth of therapy. But there are other kids I know with ASD who need lots more. It doesn’t seem fair in a way that we get so much. Plus we earn over $160K a year in this household and now receive $115 a fortnight as a carers allowance. So we take the carers allowance money and buy our son therapy tools like an ipad with lots of social skills apps. So we sign up for Foxtel so we can record the educational shows. And now our kid is the only child in the whole childcare centre with his own ipad AND foxtel. It looks like he is ‘spoilt’ but he isn’t, we just need to spend the money that Centrelink is giving us on him. There are people struggling with high needs kids who need the money more than us. There are kids that are non-verbal & in nappies who need help more than we do. Plus the FACSIA funding finishes when the child turns 7. So if a child is 8 when diagnosed, then the child gets nothing. Likewise if the parents or childcare centre don’t pick up on a problem, and don’t pursue a diagnosis, then the family are still caring for an child with needs but they get nothing in support. The written diagnosis on a letter seems to be worth more than gold.

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

• Better access to education and work opportunities,
• More opportunities to participate in the community,
• People with a disability can plan their lives and pursue their goals and dreams

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Accommodation options,
• In-home care and domestic assistance

I support the introduction of the NDIS.

I don’t really know what it is all about. But a comprehensive national program has got to be better than the messy jigsaw that currently exists. It is just a maze. Smart parents like us start a folder, contact services, get on waiting lists, keep copies of documents/receipts/appointment dates, read articles, join support groups/play groups and try to get all the therapists working together to support our child. Because everything happens at the same time - Speech, OT, early intervention, paediatric doctors. One therapy does not stop and then the next one starts. It is all going on at the same time. As parents need to be organised. We can do it. But to some parents who aren’t in the habit of using a calendar find it really difficult to be organised. They don’t know where to start and feel intimidated when contacting government departments. They need support through the maze of services and funding. They need a clearer, more equitable

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system.

I agree for my submission to be made public

Regards,

Ms Patricia van Ritten