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, 25 December 2012 1:07:33 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.

My husband and I are both disabled and live on his life pension from his superannuation. I am on Disability Support Pension (part payment) and thus have a Health Care Card.

I was born with pan hypopituitarism due to foetal alcohol syndrome. I was under-developed at birth due to a lack of growth hormone. My pituitary gland didn’t develop properly - an MRI scan shows it at 60% size. I have an absent pituitary stalk. I have Addisons Disease (secondary). I don’t produce Cortisone so have to take Cortisone Acetate supplement three times a day.

Due to the long-term use of corticosteroids I also have Cushings Disease.

My feet didn’t develop properly so I have congenital talipes equinovarus (extreme club feet) and had several operations.

My husband has Autism (Aspergers), Narcolepsy (Sleep-apnoea induced epilepsy), Industrial deafness, Chemical sensitivity after working in the Galvanising workshop at Hydro Tasmania. He has special needs and as he is 64 they will soon increase, along with his arthritis, tendonitis and one day needing hip replacement surgery.

At present the disability support system doesn’t work for my family. My husband and I both require disability scooters to get us around due to limited mobility. We spend money at naturopaths because of our suppressed immune systems. We are doing the best we can but are told that there are no jobs that will hire us due to our health problems. We cannot afford to have hip or knee reconstruction surgery in the near future unless it is from private doctors in private hospital - which we cannot afford.

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

• Ensure support and equipment is available when needed,
• More employment of people with disability and less reliance on social welfare,
• Minimising the number of times people have to tell their story in order to get support

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Equipment and home/vehicle modifications,
• In-home care and domestic assistance

I support the introduction of the NDIS.

Because the current disability system does not work. Levels of support for one disease or condition or disability do not exist for another equally crippling or disabling disease or condition.

People who are disabled because of accidents are afforded luxuries those who were disabled from birth are not.

It is not fair for a child who was born without working legs has less support than someone who was in an accident - they are both disabled, why should we discriminate - they are both deserving of the ability to be mobile and lead a quality life with a chance to be employed if they are able.

I was born with multiple deformities and disabilities and thankfully I have lived a rich and rewarding life despite living with a life threatening condition (pan hypopituitarism), in constant pain and discomfort due to talipes and fibromyalgia. I struggled through a Bachelor of Education (Primary) degree over eight years part time because my dream was to be a teacher and help change the world as the children are our future.

I was taught to be strong and be grateful for what I have and what I can do - there are others in the world far worse off than I. When you look to others without legs or arms or born with conditions that limit their ability to interact fully in the world around them you then want to fight for them to have a quality of life that most people enjoy.

It is time to invest in health, education and that everyone has a right to disability support services, equipment and respect. There are so many people out there who are disabled through no fault of their own and yet treated like a burden on society or not treated like equals. Take a look through the history books - so many disabled people made the world what it is today.

Wikipedia lists the following famous people with Addisons Disease:

[Famous Addisonians]

e United States president John F. Kennedy (1961-63), probably the single most famous case of Addison’s disease

e United States President John F. Kennedy was one of the best-known Addison’s disease sufferers. He was possibly one of the first Addisonians to survive major surgery.[15] Substantial secrecy surrounded his health during his years as president.[16]

e Eunice Kennedy Shriver, one of John F. Kennedys sisters, was believed to have Addison’s disease, as well.[17]

e Popular singer Helen Reddy[18]

e Scientist Eugene Merle Shoemaker, codiscoverer of the Comet Shoemaker-Levy 9.[19]

e French Carmelite nun and religious writer Blessed Elizabeth of the Trinity[20]

e American artist Ferdinand Louis Schlemmer died from Addison’s disease.

e Some have suggested Jane Austen was an avant la lettre case, but others have disputed this.[21]

e According to Dr. Carl Abbott, a Canadian medical researcher, Charles Dickens may also have been affected.[22]

e Australia’s youngest rugby league football international, Geoff Starling[23]

eo Osama bin Laden may have been an Addisonian. Lawrence Wright noted that bin Laden manifested all the key symptoms, such as “low blood pressure, weight loss, muscle fatigue, stomach irritability, sharp back pains, dehydration, and an abnormal craving for salt”. Bin Laden was known to have consumed large amounts of the drug sulbutiamine to treat his symptoms.[24]

ee Basque nationalist and founder of the Basque Nationalist Party, Sabino Arana died in Sukarrieta at the age of 38 after falling ill with Addisons disease during

• time spent in prison.

• One of Canada’s top gymnasts, Nathan Gafuik, was diagnosed with Addison’s disease when he was 15

http://en.wikipedia.org/wiki/Addison's_disease#Famous_Addisonians

I agree for my submission to be made public

Regards,

Mrs Vanessa Pike-Russell