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 10:23:32 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.

There is no end when someone in the family has a disability. There is never a rest, a reprieve or remission. It is constant and so very exhausting. What I have discovered is, as a child ages, the service/need changes and so it’s difficult to pinpoint what would work forever. The needs our family has now might be different in one, two or three years. A person with a disability is as individual as a snowflake.

The system has failed on so many occasions and our daughter is only five years of age. She waited nearly 12 months for a suitable chair in which she could feed, her stroller took months to arrive and if we wanted a sun shade, a basket for shopping etc., (all the ‘extras’ that are standard with mainstream strollers) we were expected to cover the cost for any of these luxuries ourselves. Unfortunately these are just two examples I am sharing, there are many, many more.

Therapists via the public system are few and far between and if you find a good one, you pray that they don’t leave for a private practice or move to another area. Once ‘Better Start’ came into the picture the amount of therapists who increased the cost for sessions was amazing. Virtually overnight many of the therapists aligned with Better Start increased their costs, which means that the funding, gratefully received, does not go as far.

Getting to see specialists is an enormous stress for most families, but when you have a disabled child you know the sooner you get to see a specialist the sooner your child is pain free or that at least someone is trying to help. Once again, unless you have access to a private specialist, the wait can be months. Our child had a massive seizure last September (2012), it lasted for over 90 minutes and she was hospitalised. While the care at the RCH in Melbourne is second to none, we are still waiting to see a neurologist and her seizures are still there.

Respite is barely there. When we dared suggest to Carer’s Victoria, Respite Connections that we wanted to form a connection with a respite worker/carer, we were dutifully informed that it would be too difficult. We would just have to be happy with who we got. We tried letting the person know that our daughter is non-verbal, with complex medical issues and quite vulnerable, but it made no difference. I wonder how many parents of children with no disability would be happy to have a different person look after their child each time they needed someone. Our local council has tried, with the little time they are able to give, to ensure our child has a regular carer and this has worked well.

Choosing a child care centre/kinder/school for a child with a disability is extremely difficult. In spite of legislation that makes it illegal to discriminate we searched and searched for a child care centre that was willing to take our daughter. Some suddenly had a waiting list, where there was no waiting list when I called on the phone, some made it sound as though we were asking

them to perform a delicate surgical procedure and one made us feel like it was no problem and they would love to have her. The red tape involved in submissions for extra funding for staff etc. doesn’t help. One of the greatest success stories is directly related to experience at mainstream child care and kinder, yet if it’s so difficult to access, then how many other families have chosen not to fight that particular battle? We would have preferred to send our daughter to a mainstream school part time, but once again, the funding for students with disabilities is such that it makes this difficult, especially when therapists are needed at the mainstream school. The benefits for both the disabled child and the rest of the class/school cannot be measured; tolerance, understanding and acceptance are just some of the positives for those attending the mainstream school.

When someone in the family has a disability such as our daughter’s, income becomes another worry. We became a one-income family and within months, paying bills became difficult and nigh on impossible to try to keep mortgage repayments going. It is as though the system wants you to sell everything you own and become totally reliant on the government. We want to work, we don’t want to rely on the government for everything, we don’t want to sell our family home and rent somewhere to be eligible for benefits. Help us help ourselves, thats all we’ve ever wanted to do.

Finally, when all the day to day requirements are done, and you’re sitting down thinking about the future, its not pleasant. What happens to our child? Who will care for her and love her? Who will let her know that no matter what disability she has, she is a person and she matters?

So why doesn’t it work? Long wating lists for therapies and equipement, the cost of specialised equipment, not enough speacialists, no respite, no voice for the disabled, lack of inclusion at child care, school, work level, no income - disability = poverty and absolutely no future planning.

All these things keep us up at night.

Yours Sincerely,

Kim Simmons

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 education and work opportunities
• The ability to receive services when needed and in the way that suits the person
• 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, 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
• Education support (technology/services/equipment)
• Support for families and carers
• Flexible in-home/outside home respite
• Crisis and emergency support

I support the introduction of the NDIS.

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The system as it stands at the moment is totally dependent upon the financial situation the family is in when the disability occurs. The level of care and access to services and therapies centres around how the disability occurred. If my daughter’s brain damage was a result of a car accident, TAC would be covering costs of rehabilitation/therapies but as hers happened at the time of birth the situation is completely different.

I agree for my submission to be made public

Regards,

Ms Kim Simmons