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: Wednesday, 23 January 2013 8:32:08 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.

We had to fight to be able to access any kind of help or services. For example, obtaining a companion card for our son who has severe autism was such a distressing experience that even some of my son’s therapists said they were no longer going to help families to obtain it. We were deAlt with with people who were completely uninformed, telling us that autism WAS NOT a life long disability and that we needed to wait to see how he would evolve, that this services were not targeted at children, etc. Can you believe this?? Despite not having any family around to help, caring, working and studying, we only received very limited respite during the flood when we lost everything we owned and were in a very difficult situation. The carers were often different, changed at the last minute & sometimes even cancelled at the last minute - this, for a person with autism & their family, is a nightmare! This was taken away very quickly as we were supposedly “ not longer in need“ of any help d espite not getting proper sleep, being exhausted and having a non existant couple or social life. We were treated as if were trying to “abuse” the system when we asked for our respite to continue as we felt that, even with 4hrs of repite per week, we were starting to feel life we were getting a bit of our have a bit of our life back. Unlike many people I know, we did obtain some therapy for our son through DSQ. However, sessions were so scattered that, hadn’t we paid a very expensive price for private therapy (& probably will for a very long time), these would have hardly made any difference for a child with such high needs, very poor communication skills and sensory problems like our son. The system as it simple does not work, it creates more distress than positive outcomes. It completely fails to do what it aims at doing which is helping children and their families and requires some serious attention.

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

• Ensure support and equipment is available when needed,
• People with a disability can plan their lives and pursue their goals and dreams,
• 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:

• Life-skills,
• Recreation and community access,
• Support for families and carers

I support the introduction of the NDIS.

I support an NDIS for so many reasons. As it stands now, people with disabilities and their families have very little rights, live very difficult lifes with very little choices in what happens to them. They are still treated as second class citizens, most have very limited community access and opportunities to continue learning. The support offered is supposed to be based on needs but it is really only dealing with crisis situations, pretty poorly too i must say. Many people dealing and assessing families often have very little ideas on how difficult caring can be, have little to no understanding of disability and the impact it has on the family. Carers

• have NO LIFE, all we do is care for our loved ones who cannot look after themselves. we should be given the support to be able to return to the workforce, study, and have some kind of balance that, in the long run, will not only help families but also reduce government costs. It is about time we realised that not everyone is born equal, has the same opportunities and capabilities, this should not translate as having less rights. All people, regardless of their abilities and disabilities should be given a choice in what happens in their life and be supported to be able to make these choices and achieving their goals.

I agree for my submission to be made public

Regards,

Miss Rebecca Monetti