General issues around the implementation and performance of the NDIS

                                 Submission 100

Hi my name is , I live in Frankston Victoria,

I have a 26 year old son named who commenced NDIS early entry in October 2016. his condition, he is blind hemiplegic and epileptic. We have requested home moficiations for his safety due to his disability. NDIS will not approve them and have recommended therapy to resolve the behaviour that caused significant damage to his home, he has had this behaviour for 24 of his 26 years.

He needs the walls reinforced to stop the noise that he enjoys from kicking. The quotes are around $30,000. Due to complicated delays in sourcing providers and long delays in waiting for a review we first submitted quotes plus all requested reports in August 2017.

The quotes expired twice before we got told today that they would not approve the home modifications. The NDIS have recommend behaviour therapy. If they read the reports they would know he is already getting therapy and the therapist recommended home modification been done urgently.

  acquired his condition as a result of an assault at age 7 months. It was heavily in the media at

the time of the trial. He has wanted to kick walls since he could use his legs again. He has had behaviour support since he was 9 years old.

He has done so much damage now that the carers who work with him are under huge stress to try to keep him from injuring himself and shifts are hard to fill. I am always concerned about loosing my job because of the situation. I have been to the ombudsman and they say they can only make recommendations but cannot get them to be accountable.

It is our family home he is staying here with his family who love him dearly and want to keep him safe. I have struggled with his behaviours on concern all his life and he is so much happier now that he does not have to go to a day program and he is self directing his day. But we need help to keep him safe when he cannot control his mood swings. Our home is not built for a grown man who kicks everything that will make a noise when he is angry and sometime even when he is happy.

I have been mentally struggling with this situation day in day out since NDIS started, I took up smoking after I had quit for 14 years and I seriously though that Daniel and I would be better off not being here at all.

I have seen many cases where NDIS will not fund reasonable and necessary home modifications on the NDIS facebook pages. I really think people need to see his living conditions and what is really happening for the most vulnerable people under this scheme. What happened to the social model and giving people the right to live at home with all the support they need to live with their families?

They have given us a significant package and much more of it has been spent on therapists than it would have cost to just understand that this is a part of his disability and he needs to be safe. A lot more money has been spent on therapists that cannot change the behaviour.

Kind regards