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: Saturday, 22 December 2012 12:49:16 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.

Waiting times for equipment are too long, we can wait years for a new wheelchair for my teenage son. We waited over a year for a bathroom seat/hoist system. I physically lifted him by myself for years until I sustained stress fractures in my spine and only obtained a portable hoist because Commonwealth Carer Respite (not DADHC who were case managing my son)funded one. The damage to my spine is permanent.

Eligibility for services does not guarantee funding even during a crisis. When I broke my ankle earlier this year (and subsequently developed a 20cm long deep vein thrombosis) we exhausted emergency funding within a matter of weeks. I am my son’s primary carer and a single parent. I was immobile and unable to take care of myself let alone attempt to care for my son. At the beginning of the current financial year I was told that no funding could be found for assistance for myself or my son. And while I could ‘tolerate’ only being able to have a shower once a week thanks to my sibling (also a full time carer) I could not and would not tolerate my 14yo son having to sit in his own faeces and urine all day! I eventually contacted a regional manager at DADHC and explained our dire situation. He listened and managed to find funding thankfully, because my next course of action would have been to contact the NSW Minister for Health and two current affairs programs. I am not the only carer I know who is exhausted by and frustrated with fighting for help con tinuously.

There is too much money wasted on a top-heavy bureaucracy throughout the system, duplication of forms across GOs and NGOs. There is always so much talk and so little action. Carers and people living with disabilities do not want endless committees or glossy brochures that look good but don’t do much more than direct people to Commonwealth Carer Respite and Centrelink. They want real help in their homes, equipment that does not take years to arrive, they want to be part of the larger community and have the same life opportunities.

I cannot list just three features that will have an big impact on the community, hey are all important features.

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,
• Better access to mainstream support and services,
• Better access to education and work opportunities,
• More opportunities to participate in the community,
• More employment of people with disability and less reliance on social welfare,
• More rights for people with a disability,
• People with a disability can plan their lives and pursue their goals and dreams,
• 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,
• Access to reliable

information about support options, Removal of age barriers to services for

children, People with disabilit y/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,
• Equipment and home/vehicle modifications,
• Education support (technology/services/equipment),
• Life-skills,
• Employment support,
• Recreation and community access,
• Support for families and carers,
• Accommodation options,
• In-home care and domestic assistance,
• Flexible in- home/outside home respite,
• Case management, planning and coordination,
• Crisis and emergency support,
• Positive behaviour support and psychological services,
• Interpreters and other communication support

I support the introduction of the NDIS.

All the support types listed are important, I am unable to single out three.

I support the NDIS for many reasons. Firstly, in a developed country like Australia, with our strong economy, we can afford and should have a system that is fair and equitable and one that does not discriminate on the basis of whether the disability was acquired on our roads or not.

Secondly, while all parents make sacrifices for their children, many of us single parent carers sacrifice so much more, ie, any chance of home ownership, superannuation, the opportunity for meaningful paid employment, the opportunity to afford private health insurance. We sacrifice our relationships with our partners and over time, our friends and in so many cases our own health and wellbeing. Most of us have already given up so much in order to care for those we love, please give us the security of a fully funded NDIS so that we know that our loved ones will always get the help they need throughout each different stage of their lives.

Thirdly, I believe the NDIS will simplify and streamline the process for obtaining help. Our current system wastes too much money on bureaucracy that could be redirected to where it is needed - frontline services. Those who are new to caring can take years to find the help they need, the NDIS could be the only place they need contact to find and access services.

Finally our current system is inefficient, inequitable and crisis driven, the NDIS will be efficient, consumer friendly and fair, and will allow people living with disabilities and their carers greater choice in their lives, something that others take for granted.

I agree for my submission to be made public

Regards,

ms Ingrid Kelly