Rare genetic disorder impacting children and brother's access to funding

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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: Monday, 24 December 2012 5:12:20 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.

Because of a rare genetic disorder my children and brother have always fallen through the cracks my children have always had to sharing funding so when my son moved out of home he didnt loose funding on his own but his sister also lost her funding now we get jack all nothing iam having consent meltdowns not being able to cope and now everyones ideas are now place were i have tried in the past and i will not go there again why waste peoples time my brother was with a service provider for over 30 years early this year they had him misdiagnosed with dementia this was their way of getting rid of him yet the blead him dry of 25000 dollars now i am going to have to fight them to have this money put back remind you he is under the public trustee yeh right they do a good job dont they my family needs the help now not in five years time when the ndis is here even then i feel my family will not be allowed to recieve the help they need so what is the point of begging for help iam so over this and begging our stupid government for help walk in our shoes for even three days and have the police knocking on your door lets see how you would feel and i am sick of hearing excuses to hell with it like i said i am over asking for help

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

  • People with a disability can choose the types of support to use, Better access to mainstream support and services,
  • Better access to education and work opportunities,
  • More opportunities to participate in the community,
  • More rights for people with a disability,
  • People with disability can choose who comes into their home,
  • The ability to receive services when needed and in the way that suits the person,
  • Increased ability to coordinate services to suit the “whole” person/family,
  • Minimising the number of times people have to tell their story in order to get support,
  • Less red tape, with planning done locally by people who know their community,
  • Removal of age barriers to services for children,
  • People with disability/family will influence the types of support and services offered,
  • 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,
  • Employment support,
  • Support for families and carers,
  • Accommodation options,
  • In-home care and domestic assistance,
  • Flexible in-home/outside home respite,
  • Crisis and emergency support,
  • Positive behaviour support and psychological services

I support the introduction of the NDIS. honestly i dont know if i support the ndis cause of our family sitituation i feel that we will again fall through the cracks or i will have to choose on of my children over the other i cant do that not now or ever the ndis if i am told the truth the ndis will make sure my family dosnt fall through the cracks it will mean service

providers will never again be able to rip my brother off and i will hopefully not be scared of visist from the police or be scared of loosing my home

I agree for my submission to be made public

Regards,

Mrs mary spencer