Meet Gracie: The adorable face of the NDIS whose life is about to change

The National Disability Insurance Scheme (NDIS) is to be rolled-out in NSW and Victoria over the next two years. And for special kids like Gracie and their families, it means positive changes to their quality of life.

First published at kidspot.com.au on September 23, 2015.

Graciemain

This gorgeous girl also has cerebral palsy, epilepsy, global developmental delay, severe intellectual disability and cortical vision impairment. But now thanks to the National Disability Insurance Scheme, her life, and that of her family’s, is about the change forever.

Her mother and full-time carer, Susan Wallis, says that although Gracie will never walk or talk, her joy and happiness, as well as her capacity to give and receive love, is inspiring.

“Gracie may not be able to walk or talk but her quality of life is better than anyone else I know,” she says.“She enjoys the simplest things like when her daddy rubs his unshaven chin on her neck when she’s out of the bath and ready for bed, or a raspberry blown on the back of her neck and a foot tickle. Her giggle is infectious and her ability to enjoy the smallest things is something we can all learn from.”

A win for people with disabilities

It was the legislation that brought the then Australian Prime Minister Julia Gillard to tears when she first introduced it to Parliament in 2013 – an achievement she deems as one of her greatest during her tenure as PM.

And, after hitting a brick wall with the Abbot government over the past couple of years, the National Disability Insurance Scheme (NDIS), previously known as DisabilityCare, is now finally back on track.

Last week, Australia’s new Prime Minister, Malcolm Turnbull, signed agreements with the Victorian and NSW state governments to progressively roll out the NDIS in these states, with the national roll-out expected to be announced shortly.

The NDIS will support people with a permanent and significant disability that affects their ability to take part in everyday activities. It will ensure Australians with disabilities and their families are provided with financial support, tailored services and the promise of an improved quality of life.

“This marks a huge milestone towards the delivery of one of the largest social policy reforms in our nation’s history,” Prime Minister Turnbull said at a press conference last week.

“The agreements balance improving services as quickly as possible with getting it right … (and) also give certainty to their families who will receive help from the NDIS.”

Meet Gracie …

Gracie

Susan enjoyed a relatively straight-forward pregnancy with Gracie, but like many of us, suffered from a string of unpleasant pregnancy symptoms.

“I went into spontaneous labour on Gracie’s due date, which was great for a control freak like me,” Susan laughs.

“But my instincts told me something wasn’t right … but this was my first baby and I had no previous experience so I ignored the little voice in my head which very clearly said ‘cut this baby out of me’.

“I wish I hadn’t and I have never ignored my gut instinct since.”

She’d been at the hospital for only four hours and was only 3cm dilated when, during a routine check, the midwives discovered that her baby’s heart rate was very low.

“Concerned it could be my heart rate not hers, a monitor was placed on her head and the worst was confirmed. Her heart rate was 50 instead of 150 and she had to come out quickly,” she explains.

Susan was rushed into theatre for an emergency C-section and Gracie was stillborn – she had no heartbeat or respiration. But after cardiac massage, thankfully the doctors managed to get her little heart pumping.

“Gracie immediately started experiencing seizures and required resuscitation four times in her first 24 hours; a tube was put down her throat to keep her breathing,” Susan says.

When Gracie was just a day old, she was rushed to Sydney’s RPA in a helicopter.

“Gracie had continuous seizures that required so much medication she couldn’t maintain her own breathing. She spent four days on life support and was four days old before I could hold her, with tubes coming out of her little body all over,” Susan recalls.

A real little fighter

“She was a healthy 8.5 pounds, which helped her fight, and she was mine, which made her stubborn and obstinate and ready for a fight.”

“We spent day and night by her bedside on the NICU and I sang and told her how wonderful her life will be once she got out of hospital,” Susan says. “And she believed us and hung on.”

“We spent three weeks in hospital all up and she came home breastfeeding like a pro, which she did until she was almost two.

“Gracie is a little legend, and has consistently over achieved beyond the doctors expectations.

“She is my hero and I got lucky when she decided to hang around and let me have the privilege of loving her.”

The challenges

With elderly parents, family living interstate and a husband whose work saw him away from home for at least 12 hours a day, once Gracie came home Susan was faced with some significant challenges.

“After the first three weeks in hospital we came home to a regime of three-to-four weekly medical and therapy appointments – many of which were in Sydney which was a 90-minute drive in each direction,” she says.

“Gracie barely slept unless she was in my arms after a breastfeed or driven in the car so I was beyond tired.”

And while she says she has an incredible network of girlfriends who gave her much-needed emotional support, there was little opportunity for her to have a break from caring for her baby girl until she was referred to a respite organisation when Gracie was 18 months old.

“I’m now the chairperson of that organisation, Interchange Illawarra, and I’m proud to be helping to govern an organisation that was a real life saver to me when I was at my lowest,” she says.

“It’s about paying it forward.”

Graciefamily NDIS real life

Paying it forward

Susan and Gracie are now familiar faces in the Illawarra – they’ve been campaigning for the rights of the disabled and their families now for many years.

Mother and daughter have featured in the pages of the region’s local daily newspaper several times and been interviewed on radio and television to raise awareness of the dire need of NDIS for many thousands of Australians with disabilities and their families.

She says she first got involved with the Every Australian Counts campaign in 2011, a massive national initiative that called on people with disabilities, parents like Susan and other interested parties to undertake a range of activities to create action and change.

“I started by visiting my local MP who signed the NDIS pledge. I attended rallies and wrote to and met with (the then Minister for Disability Services) The Hon. John Ajaka a number of times.

“Gracie became the face of the campaign locally and I was proud we could play a part. She’s made more impact in her short years than many adults make in a lifetime.”

Why campaign for the NDIS?

Susan explains that the NDIS removes the inequity about disability support funding.

“Previously, the amount of funding and support you received depended on how you acquired your disability. If you were disabled from birth, had a car accident or could otherwise blame someone and therefore sue for damages or claim insurance, you did OK. Not great, but OK.

“If you had a stroke, a fall or a diagnosis post childhood or adolescence that resulted in disability, then tough luck. You were expected to rely on family and friends and often fundraising to get the daily support and modifications and equipment you needed.”

But now, she says, the NDIS makes such distinctions irrelevant and all eligible people with diagnosed disability can have reasonable access to resources.

“If you need support that is considered fair and reasonable you make the request in the NDIS plan and the support is provided,” she explains.

“It’s not perfect yet, and some people are still not getting all the support they need, but it seems to be getting better and the future is getting brighter and more equitable for people with disabilities and their families.”

Susan says the economic as well as the obvious social justice benefits of the scheme for the disabled and their families are immeasurable.

“(People) are getting into employment, training or community participation, jobs are being created for more support workers and parents and carers are getting back into the workforce too.

“And it’s only fair.”

The future looks bright

Susan says that one of the most important benefits she hopes to access for Gracie, in the short term, will be wheelchair modifications for a vehicle.

“I lift Gracie between 30-50 times every day and although she is less than 20kg my back and shoulder are about to give in.

“So this would be a massive help to allow me to stay strong enough to keep caring my princess for the rest of her life.”

In addition, she says the NDIS will increase her family’s access to respite care and provide Gracie with more opportunities to get involved in the community to enjoy activities with her peers with and without disabilities.

NDIS roll out in NSW and Victoria

The release of roll out plans for Victoria and NSW will give certainty to 245,000 people with disability, their families and carers who have been waiting for news of when the NDIS will come to them.

For further information, and to find out when the NDIS will roll out in your region, visithttp://www.everyaustraliancounts.com.au

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