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: Tuesday, 22 January 2013 7:12:47 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.

Rural North Coast isolated farm family, son with Cerebral Palsy. No funding for intensive therapy. Disability services difficult to find and access. Two parent appeals needed before appropriate support was secured at the local community school with siblings. Made to feel like an aggressive demanding person which impacted on family where I was being a well educated advocate for our son. Nursing aged mother and father in law until died with totally inadequate support economically and financially for all involved this impacted on our children. Un organised un coordinated therapist support how to find the support so exhausting and confusing despite being asked at various disability forums what would support us parents they were never followed through. Respite is inflexible strangers I would prefer people my family knows for most situations then we can all relax and actually have respire! If I find someone my son feels comfortable with they have be linked to a service the service takes admin fees 12% and more leaving us with hardly any funding. We need self managed we are in the post school time now and have had a terrible experience signing up with a Transition to work provider had 2 interviews made sure we were all comfortable with each other and the support worker had the specialised skills needed also took family members to the interviews (time off wok for t hem) only to be rung in week 3 and told the worker had been made redundant along with 40 other employees. Not what we needed in critical post school months. Since then I feel like local agencies are viewing my son as a commodity its like they are all trying to get me to pick them! All the agencies that coordinate the Transition To Work program are only disability specific we want to access mainstream agencies as our son has been mainstreamed throughout his life. In the current model our son has to share his funding and participate in groups of people with disabilities (apart from the support workers) in activities because this makes the funding go further for the agency or organisation. I have written how I feel and I do hope you will take the time to read it.

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

The most important services for the NDIS to provide are:

• Employment support,
• Support for families and carers,
• Interpreters and other communication support.

I support the introduction of the NDIS.

Because I have no choice our situation could not be worse than it is.

I agree for my submission to be made public.

Regards, Mrs Hilary McPherson