NDIA Accountability Project

Challenges for individuals with myalgic encephalomyelitis in Queensland

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: Thursday, 24 January 2013 4:11:46 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.

Currently in QLD people with myalgic encephalomyelitis are not considered to have a disability. That is despite many of them being so ill that they cant sit up, can’t self care.

QLD say that this disease is treatable if so where are the treatments? QLD does not even have 1 ME public specialist. It does have a few private Dr.s who charge hundreds of dollars to “treat” these patients.

Patients with ME die 20 years younger than average typically of heart disease, cancer suicide.

This disease creates a huge burden on carers and families the patients are too illy to go to respite care YET QLD Disabiilty Services says that they are not disabled? ??

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 choose the types of support to use, The ability to receive services when needed and in the way that suits the person, Minimising the number of times people have to tell their story in order to get support

The most important services for the NDIS to provide are:

  • Equipment and home/vehicle modifications, Support for families and carers, Accommodation options, In-home care and domestic assistance, Flexible in- home/outside home respite, Crisis and emergency support

I support the introduction of the NDIS.

Because every Australian deserves a fair go not just those fortunate not to live in QLD with a disease that Disabilty Services Qld doesn’t recognise. Although maybe it doesnt really matter as evidently Disabiilty Services QLD had no budget for aids and equipment this year anyway!!!!!

I agree for my submission to be made public

Regards,

Ms Adrienne Wooding