Justin, like many others welcomes the introduction of the NDIS. However, with change comes uncertainty and he is concerned that his funding may not meet his current needs and the impact this will have on his life. Unlike people without a disability, whenever Justin wants to leave the house without the support of his family, he has to worry about the cost of paying for a support worker and the impact this will have on his support package.
Justin was born with spina bifida, a positive attitude, strength of character and a determination to open doors that have been closed. He was also fortunate (as his mother Carmel tongue in cheek says) “To have picked a loving and supportive family to have been born into.”
As a child, Justin went to a specialist school four days a week and attended a mainstream school the remaining day “I was a pretty normal kid who lived at home had the same interests as my friends”. He has a passion for cars and football (Essendon), a dislike of being told what to do and people not listening to him.
The second of three children – an older sister Natalie and younger brother Sean, Justin is thankful for his amazing support system. Parents Carmel and Brendan have always held a positive outlook and did whatever they could to make his life better. Natalie, Sean and extended family have ensured he was included in their social activities, loving him unconditionally and teaching him to never say “I can’t.”
The support Justin is given highlights the importance of the home environment in shaping the happiness of a person with a disability. As in most areas of life, it’s structural factors that make the real difference. Inclusion and participation, not impairment is key.
Justin was one of the first students to benefit from the Futures for Young Adults program that provided support as he transitioned from school. He went on to attend day classes at Yooralla for 10 years. When the family decided to take an overseas trip it was a journey that was to change the way Justin received his support. During the family holiday, Justin suffered from severe pressure sores that were to see him hospitalised and unable to go out for over a year.
Once recovered he found his place at day-care was no longer open to him, a situation that left Justin and his family disappointed and confused. It was at this time they were recommended to contact the team at IDS. They welcomed the personal interaction and continuity of staff and recognise the extra work the IDS team do on their behalf to ensure the support staff provided are in tune with Justin’s needs and preferences.
With an NDIS planning meeting just around the corner, Justin is prepared to put forward his case. With the support of his mother and Janelle Summers (IDS Individualised Support Manager), who will both be at the meeting to provide support, his concern has been minimised.
Justin believes he should be provided with opportunities to develop interests and make choices. Carmel and Janelle will work together with Justin to ensure his dream becomes a reality.
Historically, many Australians’ born with spina bifida were placed in institutional care. Fortunately, much has changed and the way we think about disability today is very different from the views our society held only a few decades ago. This changed view has developed alongside a growing human rights movement that has promoted concepts such as rights, empowerment, self-advocacy, inclusion and mainstreaming for people with disabilities.
This, in turn, has raised expectations among people with disabilities and their families who now aspire to live a life that is full of purpose, opportunity and meaning, Justin’s life demonstrates how far we have progressed, the benefits of change and highlights the importance of a loving, caring and supportive network.
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