Stories - November 16, 2018
Couple’s life-changing NDIS plan
For Belinda Sweet and her husband Nelson the National Disability Insurance Scheme has already had an enormous impact on their lives.
The loving couple have been able to reconnect with their community, find a home of their choice, spend more time in the garden, and meet new friends.
For 40 year-old Belinda, who is mostly confined to a wheelchair, it has reignited her sense of purpose and belonging, and at the same time eased the pressure on her dedicated husband who has been her carer for the past seven years. The couple self-manage their NDIS plan which began three months ago.
Intereach is the community and human services organisation which partners with the National Disability Insurance Agency to deliver the NDIS in the Murrumbidgee area.
“It’s been amazing,” Belinda said.
“I now have a carer for up to four days a week which has freed my husband up; he’s been my full-time carer basically with no break. He had to give up work because I would fall and there would be no one there to help me. Thanks to the NDIS we’ve been able to move into a house which the NDIS has supplied with everything we needed for the wheelchair and it’s in an area that we were able to choose and we have eight acres. We were living in an area that we didn’t like but we just had to make do with the house we were in because it had what we needed for the wheelchair. Now we have a choice and we receive rent assistance.
“The NDIS also approved car modifications which will be a rack so my wheelchair can be stored on the back or top of the car. I don’t go to the supermarket or downtown to collect anything big as my wheelchair takes up the entire boot space so I stay at home. Soon I’ll have a mobility scooter and Nelson and I can do more things together and he won’t have to push me, and I’ll also get a chair with wheels for the shower and a new accessible bed; Nelson won’t have to lift me in and out of bed or the shower. I’ll have a lot more independence.”
Belinda’s condition is most commonly known as functional neurological disorder, but because it’s so rare it is difficult to diagnose and treat. The couple said they believe this was the reason they were initially denied an NDIS plan. Belinda first noticed signs of her condition after a traumatic house fire about 10 years ago.
“I have seizures, I collapse, I lose my voice; initially they thought it was post-traumatic stress disorder but it just got gradually worse. It’s similar to MS and it’s like I can tell my arm to do something but my leg will respond, it’s horrible. The hardest thing was that people thought I was faking it for attention because the condition is not well understood or researched, even in the medical community. There are only three doctors in Australia that I know of who know much about it and none of them are in New South Wales, so I felt very alone. I was working as a teacher (before the fire) but haven’t been able to work since. But the NDIS has helped get me back into the community, and Nelson as well. I was just sitting on the couch for most of the day, not able to do anything.”
Nelson said the NDIS is making their lives as normal as possible. He said the couple, who live at The Rock, were now helping to put the finishing touches on Bridge Cottage in Wagga, which is a support house for people with disability. It’s where Belinda and other NDIS participants will meet and enjoy varied activities together.
“We’ve spent the past three weeks helping establish Bridge Cottage which will be run by Drew and Maxine Adams,” Nelson said.
“It’s been great. We’re meeting new people and this is where we’ll come to share meals with others and do activities, including a day trip out around town or to surrounding towns. The Cottage will be a home away from home and the NDIS will help pay for us to utilise it; it’s amazing.”
Belinda said until the NDIS was introduced she had “fallen through the system”. She was totally reliant on her husband and their three daughters – Elisa, 22, Zoe, 19, and Cindel, 7.
“I’m now able to do more gardening, for example. I love gardening but had to crawl around pulling a bag filled with tools and plants and other things,” she said.
“It’s the little things with the NDIS – now I have a little garden cart I use and it’s so much easier to get around. I attend art classes each Saturday which were rolled out by the Riverina Community College which are an NDIS approved course. I had always wanted to explore art but couldn’t get off the couch but now I’m learning so much about it. I’m so thankful for the NDIS and the people who assisted me to be able to access it. Just getting out in the community has made a huge difference to my life. There are some things people take for granted that people in my situation can’t do.”
Belinda and Nelson said they have several people to thank.
“NDIS support workers Drew and Maxine Adams from Empower Riverina have been amazing, and so has Cass Harris, a Local Area Coordinator from Intereach who helped me through the process of my NDIS service plan. I’d also like to thank Sarah and Amie from Regional Disability Advocacy Service who helped me through the application process for NDIS. These people are the ones who have helped change our lives forever.”