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 4:53:45 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.

My daughter has been ill with a chronic illness for 8 and a half years. I have given up study and work to care for her. Her illness (Myalgic Encephalomyelitis) is not recognised and is also not deemed serious enough for me to have extra support financially or otherwise, despite the fact I have been her carer for the duration of her illness. Everything I have had to provide for my daughter from supplements to bathing aids to wheelchair and walking sticks, I have had to provide by myself. I have been the only one on a daily basis to provide for her needs, and she has most often needed someone to be at home with her for the bulk of the time she has been ill. Financially the stress is absolutely enormous and ridiculous really, given what we are expected to survive on. Isolation, social stigma, and lack of education of the medical community and community at large have also made life very stressful for us. Lack of services and access to therapies has also made it extremely difficult. Five sessions per year of an allied therapy is really quite pathetic compared to the real needs of a family with a disabled person. It does not in the least come anywhere close to providing what is really needed.

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

• Ensure support and equipment is available when needed,
• Better access to mainstream support and services,
• More rights for people with a disability

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Education support (technology/services/equipment),
• Support for families and carers

I support the introduction of the NDIS.

For anyone living with any type of disability, the barriers are enormous and the means to live a decent life are extremely limited. There is a dire need for people in this situation to have support, understanding and financial aid readily available and at a realistic level in order to survive and have any sort of “normal life”. Living with a chronically ill child is an enormous challenge, both for the child who is ill and for the immediate family. I think it is time those living with disability are enabled to live more fully and with more real support and services. The burdens that families carry who are dealing with disability on a daily basis, from financial stress to social isolation to lack of services, is enormous. Anything that helps to lessen this burden and empower families in this situation will be of great benefit, and will ultimately benefit society as well, by helping people to be able to participate more fully in their communities at large.

I agree for my submission to be made public

Regards, Ms Jayne Eldred