Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Friday, 25 January 2013 4:14:19 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.

I have been a single parent of my 22 year old son living with Down Syndrome, severe verbal Dyspraxia, and mild to moderate oral and motor Dyspraxia since he was three months old. In addition to this my son was born with holes in the heart and underwent a repair at four months of age. Still to this day, he lives with leaking valves in the heart.

Over the past 22 years, we have faced many issues with how disability support is administered and to whom. The irony in saying how fortunate my son is in having Down Syndrome, as it is only through this he is eligible and able to gain some support in the current system.

During this time we have faced issues around accessing ongoing speech therapy, recognition and funding for support of the Dyspraxia diagnosis within the school system, and now we are faced with issues around the opportunity for him to pursue his dream of participating in the economy through a paid position with the appropriate supports in place.

Over this time, it has put a great strain on me as a single parent, both financially and emotionally. Due to the inconsistency of speech therapy services, I had to seek out costly private therapy to ensure my son would be given the best chance in improving his speech. If I had left him in the public system, he would have continued to have nothing more than six monthly consultation sessions when he required weekly therapy sessions. These sessions also consisted of therapy in eating, swallowing and reducing dribbling - all a result of his unrecognised disability, Dyspraxia.

I have had to approach charities to assist with providing his first communication device and, due to the nature of technology, have had to since upgrade at my own expense to a more efficient and portable device, plus software.

His diagnosis of Dyspraxia was not recognised for support within the school system. I was informed that this was a language disorder so would not entitle him to funding. It showed that those administering assessment for support did not have a full understanding of what and how Dyspraxia affected my son. On explaining the needs resulting from dyspraxia and the neccessity for sign language support in addition to reading and writing, I was informed he was not defeat so they did not have to specify AUSLAN as a criteria when selecting a full time aide that was to replace the casual aide, who had undertaken AUSLAN training to assist my son and others within the support unit. It is not enjoyable having to fight each step of the way to have a disability recognised, when dealing with the day to day issues on top of that.

My son would love the opportunity to be a contributor to the economy but is unable due to the assistance needed to undertake tasks. He is able to volunteer as he has the required support, but once you look to a paid position those supports are unavailable, as is the funding.

Statistics show that in 1983 the average life expectancy of people with Down Syndrome was 25 years of age.

Today that age is 60 years old, more than double in 30 years. Many people living with Down Syndrome will outlive their parents. This is just one disability that will continue to increasingly require support services and they are not alone as there are so many other types of disability that have also seen an increase in life expectancy. The current system can not provide for this in the future and will result in greater damage to the lives of many.

For a single parent, who is the primary carer, it is of great concern to think about who will be there for my son when he is 60 years of age, given the current system. I am not going to live forever, and having myself been diagnosed at the age of four with a disability - epilepsy - the care of my son under the current system will become increasingly difficult.

There is such a diverse range of “programs” on offer to people with a disability but the eligibility to be accepted into these programs does not see everyone considered. A persons life does not run between 9am and 3pm, Monday to Friday. It is not one filled with activities or programs to make the day go by. People without disability do not live this type of existence. People with a disability deserve valued roles, the right to choose where they work or live, and the people who come into their lives. The current system does not allow this.

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

• People with a disability can plan their lives and pursue their goals and dreams,
• 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

The most important services for the NDIS to provide are:

• Education support (technology/services/equipment),
• Employment support,
• Recreation and community access

I support the introduction of the NDIS.

Having assisted my son in self-managing an individualised funding package since 2009, I have had first hand experience of the positive impact this one component of the NDIS can provide.

From this personal experience, I have seen better outcomes for the monetary investment in my son. This is what the NDIS should be for - investing in the lives of people with a disability and their families - ensuring they can aspire to, work toward, and reach their full potential with the right supports in place. Since leaving school, my son has expressed how self managing an individualised funding package has impacted on his life when he told me, “Mum, I love my life. I’m living my dream.” That is because it is enabling him to have the right people around him, people who share common interests, have an interest in him holding valued roles within his community, and building natural relationships.

I have worked in the disability/community welfare sector for almost 2 decades, and know what a positive step the NDIS will have in supporting people with a disability and their families in having a self determined life, the required equipment in a timely fashion, and the right supports, for example appropriate matching of staff to the individual, ensuring the right people continue to work in the industry.

It will ensure people with a disability have the right to fully participate in their

community and the economy by providing ongoing supports specifically catered to the individuals requirements.

This is why I support the National Disability Insurance Scheme.

I agree for my submission to be made public

Regards,

Ms Lisa Ashford-Potter