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

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Wednesday, 23 January 2013 2:56:36 PM

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 current system does not consider the amount of support an individual child/person requires, and when allocated funding, can either be ‘too much’ or completely inadequate. In our case, for our son this funding was completely inadequate. We currently spend up to $3 000/month on therapy, medication, nappies, carers, support people and training. This is out of pocket expenses, after Medicare, private health rebates and subsidies. Let alone private health insurance, life insurance and permanent disability insurance (to enable us to keep supporting our son should something happen to one of us!) The current system relies on 2 factors - luck and money. Luck if the child/person has a disability that the state can cater for (e.g. can go to a special education school because they have an associated intellectual disability). We are lucky because our son, along with his Autism diagnosis has a global developmental delay. This allows him to attend a special education school and receive the support he needs at school. The mainstream system failed our son as there was simply no support or expertise in the school. Sad isn’t it, that we are ‘fortunate’ our child has an intellectual disability! You are also ‘lucky’ if you are not on a wait list. We still are, and have been on wait lists for up to 2 years!! We all know how early intervention is the key to success, the research that proves this is extensive. Yet, half of that valuable early intervention time is spent on a wait list! To add to that, we also know that children with an Autism diagnosis require 20-40hrs of therapy/week. Yet current funding (at its maximum) will give you 4, 3/4 hrs/week for 40 weeks of the year. You don’t need to do the sums to work out the shortfall! This brings me to my next factor - money. We sold a rental property to enable us to afford our son. I have to work, along with household chores, care for both my children, and intervention for my son as well as planning for his needs. I am exhausted, as often this is done on very little sleep, but fortunately, we are financially secure. What about those families who can’t afford what is required for their child? The answer is simple; their child does not receive the level of support required! Once again it’s sad.

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

Ensure support and equipment is available when needed, The ability to receive services when needed and in the way that suits the person, Removal of age barriers to services for children

The most important services for the NDIS to provide are:

Therapy and allied health services, Education support (technology/services/equipment), Positive behaviour support and psychological services

I support the introduction of the NDIS.

To ensure equality and quality for all people with a disability.

To ensure that there are adequate service providers.

For a lack of funding and support to not be a barrier to reaching one’s full potential.

To reduce stress, anxiety and frustration of family members due to inadequate support.

To ease financial burden on families and for financial position to not be a barrier to accessing services.

\n\nI agree for my submission to be made public\n\n\n\n Regards,\n\n Mrs Sandra Parsons