5 minute read
Feature Interview: Not just Imyjen's Mother
Supernal Interview
Not Just Imyjen’s Mother, a Look at the NDIS
by Blaise van Hecke
My son has Charcot-Marie-Tooth disease (CMT), a hereditary condition that causes a slow degeneration of the peripheral nerves of the extremities. At 26, his condition does not stop him leading a normal life despite having had both feet reconstructed in his teens.
I have often thought about how his future looks as the nerves degenerate to the point of his mobility being compromised. Will he be able to work; will he need support for physical tasks? So far this condition has not had a huge impact on his life or that of our family. But this is not true for many people in Australia.
Back in 2013, I was part of a forum at Yarra Plenty Regional Library. The discussion was the National Disability Insurance Scheme (NDIS). At that time the scheme was about to be legislated and there was a lot of discussion about what it actually was and how beneficial it would be. Of course, I had my son in mind during this forum.
What is the NDIS?
The Australian Government funds costs associated with disability, which are administered by the National Disability Insurance Agency (NDIA). According to the NDIS website, www.ndis.gov. au, there are around 4.3 million Australians living with disability. When the scheme is rolled out progressively over each state by 2020, it is estimated that 460,000 Australians under 65, who have a permanent and significant disability, will be provided with funding for support services.
The NDIS will provide people with disability with information and connections to services in their communities such as doctors, sporting clubs, support groups, libraries and schools. It’s not a welfare scheme but designed to support them to improve skills and improve independence.
Who is eligible?
People with intellectual, physical, sensory, cognitive and psychosocial disabilities are supported. Early intervention support can also be provided for eligible people with disability or children with developmental delay.
How might this look?
We’ve heard stories of young people with a disability having to live in aged care. Can you imagine the difference if they live in an environment where they are independent and with people their own age? The NDIS can provide things like accessing the community, assistance with domestic tasks and transport. These are everyday tasks that we take for granted every day.
In terms of children, the NDIS can start work early in development if there are delays. In the long term, this will make a huge impact on child. It could be speech therapy if there are delays or physiotherapy for physical development that isn’t on track.
During that discussion in 2013, the idea of the NDIS was revolutionary, and still is but, as with any new idea, there are always going to be teething problems.
Fast forward a couple of years and I was now running a publishing company and one of my authors wrote a memoir about living with a child with a severe disability.
Here’s a little taste of Christine Stow’s memoir, Not Just Imyjen’s Mother:
Most people have never heard of Schwartz-Jampel Syndrome, but Christine discovers its harrowing details when her newborn daughter, Imyjen (now 18), is diagnosed with the condition. As the mother of a normal, healthy toddler and a newborn with special needs, life for her becomes a blur of hospitals, surgeries, worry and fear. With the help of a strong, loving family, doctors, therapist and social workers, she slowly starts to make sense of the nightmare.
In dealing with the condition, she channels her frustrations and fears into a quest to speak for others who are faced with the journey into disability. As she moves forward into a new life as a mother, advocate and care-taker, she decides that neither she, nor Imyjen, will be defined by the disability. In a bold move, she runs for a local political office!
When it comes to the ‘disability community’, Christine is well versed on navigating the many pitfalls of the landscape. She is now helping people to do this for themselves and is a staunch voice for people with disability. We chatted on the phone about the NDIS.
What do you think about the NDIS?
I think it’s fantastic. As far back as 2006, when I was in the early days of navigating having a child with a disability, there was talk about a scheme. It’s been a long time in the making. It definitely makes an impact on Imyjen’s life.
How has it impacted you?
Before the NDIS came in, I had five hours per month of support. Now Imyjen gets the support she needs to live as close to normal life as she possibly can. While some carers were upset about the changes to the focus of support and the change from ‘respite’ to ‘support for person with disabilities’, I was happy for the support for Imyjen – it was never about me anyway. To me, it was simply a change of name from ‘respite’ to support. Under the previous programs, I was not allowed to use respite time to work. All I wanted to do was to work like a ‘normal’ mum might. So NDIS allows me to work, making a contribution to the community while Imyjen goes to her program. This makes me feel normal and positively impacts our wellbeing. It’s hard emotionally being a full-time carer of a highneeds person.
As with any new scheme we tend to hear more about the negatives than the positives. What do you feel are the reasons why people are not satisfied with the service that the NDIS provides?
Many people don’t actually understand what the funding is for. It’s NOT for providing medical care to people. It’s about providing services that help people live a more ‘normal’ life. It’s about working out how a disability impacts their life and what support they need to live as close to normal life as possible, to be as independent as possible.
To read the whole article go to www.supernalmagazineaustralia.com.au/past-iissues/
