NDIA Accountability Project

Caring for son with cerebral palsy and challenges accessing 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: Monday, 24 December 2012 10:21:25 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.

We have been caring for our 32 year old son with cerebral palsy full time. We are now 60 years old and have had no life outside our home. My husband relies on pain killers for his back problems, so that he can continue to lift , who is an average sized man. cannot speak, walk or carry out any self care.

The disability system is failing because we have been applying for accommodation support funding for five years without success, and no hope of receiving it because to be in ‘critical need’ and deemed eligible, we need to divorce ( ie single parent), one of us to have a terminal illness, or be aged 80 years or over.

In the last 6 months I can feel myself cracking. Our only bright spot is 1 weeks respite per 4 - 6 weeks ( IFS funded) doesn’t have the quality of life he deserves because we are too exhausted to take him out, and I am often impatient with him ( he is very alert) I lay awake at night worrying about his future when we die.

We know that there is not enough funding for the many people seeking ASF.

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

  • The ability to receive services when needed and in the way that suits the person,
  • 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:

  • Support for families and carers,
  • Accommodation options,
  • Case management, planning and coordination

I support the introduction of the NDIS.

It is the only hope for better quality of life for carers and disabled people. Most Australians are very keen to see a long overdue change to the system. A small levy is acceptable to the majority of people.

I agree for my submission to be made public

Regards,

Mrs Kathy Jones