NDIA Accountability Project

Daughter's myalgic encephalomyelitis and lack of respite support

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 6:34:52 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.

The current Queensland system DSS says my daughter who has been bedridden for 2 years is not disabled because she has myalgic encephalomyelitis which in Queensland is not a disability. Hard to see how a person who has not been able to self care for 2 years who can’t sit up to travel in a car and has to lie down in the back of the car does not have a disability. In other states she would be eligible for some help. Will the national system consider ME a disability? See the international consensus primer for medical practitioners for details about this serious and debilitating disease.

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,
  • Minimising the number of times people have to tell their story in order to get support,
  • Access to reliable information about support options,
  • Removal of age barriers to services for children, 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,
  • Equipment and home/vehicle modifications,
  • Support for families and carers,
  • Accommodation options,
  • In-home care and domestic assistance,
  • Flexible in-home/outside home respite

I support the introduction of the NDIS.

Hopefully less red tape and more services. We hope that Queenslanders will get services similar to other states. As a carer trying desperately to hold onto a job the many times I had to meet to retell my storey took its toll on me and my work mates. For HACC, the wheel hair people etc it was just 1 meeting . For me it was yet another after non I couldn’t be at work on top of all the medical appointments … In the end I lost my job. Currently my son and I get no respite we are at breaking point but there is nowhere light and noise proof where we can take my daughter. We provide a bloody cheap service for $50 a week and all we ask for is a break every now and then as we are at breaking point. Hopefully the national system will help us

I agree for my submission to be made public

Regards, Ms Adrienne Wooding