"The NDIS has changed my life" - Kevin's story, VIC
At 62 many of us would be looking forward to retirement, but not Kevin Luke.
He loves AFL team Geelong and is a supported worker at Endeavour Foundation in Norlane, Victoria. He hopes to keep working as long as his health will let him.
"We have a joke at work and laugh a lot", Kevin says.
Last year when his knee gave out due to arthritis, it was a big setback landing Kevin in hospital. The National Disability Insurance Agency assisted when his situation changed.
These days Kevin is back on his feet and has continued employment with Endeavour Foundation along with walking and weight loss as personal goals in his plan.
"I go to the gym twice a week and the NDIS pays. Under the old system you couldn't get a lot. (The NDIS) is more flexible and is so much better. We can pick and choose", Kevin says.
As Geelong was the first Australian trial site, Kevin has been covered by the scheme for three years and his annual package review will now happen every two years. "It has really improved our lives."
"If I could tell people one thing, I'd say the NDIS is nothing to be scared of. I think it's going to help a lot of people. It has changed my life."
"It is so empowering." - Cheryl’s story, WA
Cheryl Hilson is a National Disability Insurance Scheme participant in Western Australia. She has cerebral palsy and low vision, and uses a wheelchair. She now purchases her supports through a local provider, and can also pay for transport for her busy social calendar.
“The National Disability Insurance Agency has been very easy to contact. In fact, I’ve been back to the offices as they wanted people to tell our story on a course for new workers. Mine is a birth disability, someone had an acquired disability, and there was a parent of a child with a disability. If I can do this, I can help to improve the service for the next group of people coming through.
The process was difficult to get started. The forms were quite long and complicated and I got tired. They put out a standard form. I said they needed a form so that a person can write about their own challenges. You can’t put a person in a box, everyone is different. They must remember they are working with people.
For me, the service has been very good. Once the preparation has been done, everything works well. When my plan was first done by my officer, she didn’t know if it would be approved but the more practice, the better. People on both sides need to have the right amount of information. All support must be person-driven. Once it is widespread, it will work as long as people take it slowly and remember that no two cases are the same.
Now I have options. It’s so empowering to be able to exercise choice and control over the supports that best suit my needs. I’m even more active when I’m alone and currently I’m writing my memoirs.
I’m very happy. I have choice and control over my supports, and for the first time I’ll be able to live a life I’ve only ever dream about.”
"Without the NDIS, I wouldn't have the finances to employ my own support workers." - Thomas’ story, VIC
Thomas Banks published his first book ‘Through the Eyes of a Person with a Disability’ at the age of 16. Now 23, he runs his own business educating people to communicate and work with people with a disability through training and presentations in schools, businesses and other organisations. He is also an actor. Thomas, who was born with cerebral palsy, lives in Victoria.
“I have received the supports within my NDIS plan for more than a year. They are for taxis, gym membership, support workers, and miscellaneous items directly associated with my disability. I also received some funding to employ someone to support me in the first stages so I could manage my NDIS plan myself. It was important for me to do that.
I work in a vast array of environments on a national and international level so I really challenged the planner about my supports. It was a long process from first contacting the NDIA to see whether I was eligible to when my plan was implemented. There was a lot of paperwork, and meetings with several different people in the NDIA.
I really love having the ability to employ my own support workers. I work in the arts as a performer and a writer, but I also run my own business where I teach people about how to communicate with people who have disabilities. It’s not a typical support worker role because my work environment is complex. Without the NDIS, I wouldn’t have the finances to employ my own support workers.
I was advised that the NDIA wouldn’t be able to fund gym memberships any more but would fund home fitness equipment. However, I’m the type of person who feeds off other people’s positive energy."
"Our son was finally able to access the support he needs." - Rachel and Karl’s story, SA
Rachel and Karl Klose, three year-old Harrison and baby Joshua live in a remote area of South Australia. They have been receiving NDIS support for Harrison, who was born with cerebral palsy, for more than a year. Supports include speech, physio and occupational therapy, and access to a children’s service as Rachel explains:
“Novita Children’s Services makes quarterly visits and provides specialist equipment, and we have attended bike and walker clinics at their Adelaide office. We have received a customised tricycle suited to Harrison.
The most exciting support that the NDIS has enabled us to access was a feeding intensive and Skype conversations through a unique clinic called 'Lively Eaters Feeding Services' in Adelaide. We had exhausted all options and were desperate to get our little boy to eat solid food.
The NDIS planning process was efficient and ran smoothly. Our planner understood our child's unique needs. We were relieved that Harrison was finally able to access the support that he needs. The fact that a care plan is developed for each individual is a win-win situation for everyone. We enjoy being able to find the best supports and choose skilled therapists for our child.
It is hard to guess the level of support and equipment Harrison will need in advance of a one year plan. We tried our best but after eight months we've found that some of Harrison's needs have changed and we wish we could modify the plan to reflect this. A six month plan would be beneficial to keep it relevant for a child growing and developing."
"Ben's now out and about five days a week and I've returned to work." - Ben’s story, TAS
Ben has a support package for five days a week in Tasmania. Every second weekend he takes a break in a group respite centre. His mother Jo Ryan says Ben, who was born with Fragile X Syndrome, is now swimming, goes to the gym, plays golf, and meets new people in the community.
“Once we received the registration package from the NDIA, it didn’t take long to meet a lovely man who really understood the importance of a one- on-one package for Ben. This was such a relief after being expected for so long to just fit in with what was available. Our case manager worked with Ben as an individual.
Our local office didn’t make us feel like we had to fight for every bit of funding. We just wanted Ben to reach his full potential and be happy. The way in which it was presented to us was just the way they said it would be - individualised. The staff we dealt with had an enormous knowledge of the disability sector.
Ben’s never been able to play sport but now he’s at the gym, swimming, has learnt to play golf, and is out and about five days a week. I’ve been able to return to work two days a week and have joined a gym.
The only thing that hasn’t worked for us is that once we had our package in place, it wasn’t flexible. However, at our first annual review it sounded like this would be addressed.
When I was a member of the National People with Disabilities and Carers Council, we were working on the NDIS. I didn’t think I would be around to see it. Now, I am absolutely thrilled by the change it has made to our lives, and also in our city where I see the knock-on effects of the public attitude towards people with a disability. I am thankful every day that people listened and acted on what we had to say.”
"I've been able to receive the exact supports I want and need."- Siobhan’s story, NSW
Siobhan Daley is a 14 year-old athlete living with mum Caroline in New South Wales. She has been training hard to represent Australia in boccia at the Paralympic Games. Siobhan, who was born with cerebral palsy, won a gold medal at the recent Boccia NSW Junior Titles.
“The support I have been receiving is phenomenal. I have been able to find and receive the exact supports I want and need. This also means that I can choose my support workers who I call my “crew”. When something isn’t working right, it’s just a matter of a conversation with mum then a phone call and a meeting if needed. I get to choose who gets me up every morning, works with me every afternoon and, if needed, who has me if mum is away overnight. I also get to hang with friends without mum like everyone else. I get to employ a ramp assistant to help me play boccia.
The process is really easy. We just need to have a specific plan and reason for doing whatever it is that we’re doing. It requires a phone call, an email, a discussion and, if really necessary, a meeting. Mum and I know we both need to have a say in my supports and respect each other’s opinions (mostly!).
Be very clear about your plan. Think about what you want for your future and the little steps to get there. Be prepared to have difficult conversations with service providers. Never accept ‘but that it the way we have always done it’; as a reason for things not changing to support the way you want things done.
It will take time to become what it is designed to be. This is one of the biggest changes in how people with a disability are supported so there are going to be bumps along the way. It will succeed, and the journey will be well worth it!”
"Our son no longer has to fit a ‘once size fits all’ model." - Jake’s story, ACT
Jake Doyle’s plan includes personal care, respite, and one-on-one support to take a course. The 20 year- old was born with global intellectual delay and autism. He also has ADHD and anxiety disorder. Parents John and Carey say the NDIS will give Jake opportunities to secure a job and live semi-independently, as Carey told Endeavour Foundation:
“The respite funded under our son’s NDIA plan means he can hang out with people around his age and take a break. Jake has started a short course in mechanics at the Canberra Institute of Technology. He has thoroughly enjoyed the hands-on course and is asking what he can do next. The fact that the person with a disability and their family can choose what services they use, and what they want to achieve while using the services, is amazing. One of the best things is that we now have access to non-disability specific services as well. The process with the NDIA planner was very thorough.
Initially, the onus was on services to understand the requirements under the plans. It can also be a bit daunting for families to work out the paperwork. We found it very helpful having a case and finance manager, who was costed into our plan.
The NDIS will be a great success as long as government allows it to be. It can’t be any worse than the system we have been living with. Embrace it and look at all the positives. For us, the real positives are our son being included in non-disability specific programs and learning independence skills tailored to his needs, not a ‘once size fits all’ model.
It will open many doors for people with a disability and allow them to turn some of their dreams into reality. We have an idea for a business for our son based on his interests but it wasn’t achievable because of support worker costs. Now we have been able to approach services with our idea and discuss how we might work together to give it a go.”