FOR many of us, 2020 may turn out to be a year we’d rather forget. But for Maclean woman Jacques Sears, things have never been better.

Ms Sears, also known as Tasel, is deaf, but with the help of the National Disability Insurance Scheme her life has changed for the better.

With the birth of her third child only seven weeks away, change has come at just the right time.

FOR many of us, 2020 may turn out to be a year we’d rather forget. But for Maclean woman Jacques Sears, things have never been better.

Ms Sears, also known as Tasel, is deaf, but with the help of the National Disability Insurance Scheme her life has changed for the better.

With the birth of her third child only seven weeks away, change has come at just the right time.

Tasel said in the past she didn’t have interpreters or funding to help, but thanks to NDIS local area co-ordinator Libby McPhee, from Social Futures, Tasel now has the support she needs.

The 38-year-old uses her NDIS funding for interpretation services, community participation and to purchase assistive technologies.

“They really understood what I needed as a deaf person to be well supported,” she said.

“It’s much better, much improved, thanks to Hilary (my interpreter) and Libby my LAC for their wonderful help.

“It feels different. I’m happier. I can book interpreters, I can train my dog to be a service dog for me – the NDIS has enabled me to do that.”

Jacques Sears with her service dog Sasha.

Tasel’s service dog, Sasha, is a nine-month-old German Shepherd and with help from the NDIS, Sasha is learning sign and voice commands through a local trainer, Grace from K9.

Sasha will then get a vibrating collar to alert her when Tasel wants to communicate with her. As a fully-fledged access dog, Sasha will have a special access dog uniform to identify her.

“It’s really exciting,” Tasel said.

“Training my dog to be a service dog would cost too much without the NDIS, so it is amazing now the NDIS is covering it, and I’m stress free from that worry,” she added.

That’s not the only exciting news Tasel has to share. In just seven weeks she is due to have a baby.

“It’s very active, always punching, kicking and moving around in there,” she said.

“It’s a little boy. We have a name but we’re keeping it secret until the birth.”

Tasel also has a 19-year-old son, Hulieo, living in Canberra and a 16-year-old daughter LaToiah, who lives with her in Maclean.

For Hulieo and LaToiah’s birth, Tasel said she communicated with her doctor writing on paper or the doctor would talk slower so she could lip-read.

Tasel’s partner, Marcus, also helped through the birth, telling her what doctors were saying.

The birth of this new child promises to be a whole different experience for Tasel.

“All of the ongoing appointments I have for the baby I can now have interpreters for, funded through the NDIS, so I feel more confident going through all of these appointments,” Tasel said.

“I can understand what the doctors are telling me. I’m really happy. It’s been such a change for me. I’m feeling really comfortable and good about this – well supported.”

The NDIS has also provided assistive technology funding to support Tasel after her baby is born.

“I have an iPad which means I can book interpreters independently. It’s good to have technology I can use for relay technology, which helps me living remotely,” she said.

Through her assistive technology funding, Tasel has also purchased a baby alarm.

“A receptor is worn on my wrist and one around my waist, and through flashing and vibrating it will wake me when the baby is crying,” she said.

“I also have two doorbells which link to my phone so if somebody is at the door I can see who is there.”

Tasel said her support co-ordinator is currently looking for new accommodation for her daughter, and her newborn, and the new property will have front and back door alarms fitted.

“People use the back door generally because deaf people won’t hear people at the front,” Tasel said.

“That’s why I now have a back and front door alarm. It is a safety thing too. I have funding for a fire alarm also – a flashing light – to fit to the new property once we find it.”

In the future, Tasel plans to learn creative writing through TAFE, but for now her focus will be on her family.

In 1996, at 29 years of age, Rocky Mileto sustained a severe spinal cord injury from a tackle in a game of rugby union.

“I had the ball, it was one on one. Just the wrong angle, wrong timing,” Rocky said. “It was that easy, that simple.  Most injuries, rugby or rugby league injuries, are really simple.

“You could be in a car accident and roll 15 times and have a broken collarbone, but you bump your head playing rugby and you have this level of disability. And everything’s gone, nothing in the fingers, no feelings, no sensory or motor response. I can’t feel my legs, can’t move my legs.”

Over the past 23 years since his accident, Rocky has seen many changes in the disability support sector and has even been inspired to start a charity, Hearts in Union (heartsinunion.com.au), which supports people injured through playing rugby union.

Since joining the National Disability Insurance Scheme (NDIS) in June 2018, Rocky has been supported by Social Futures’ Local Area Coordination (LAC) program in his home town of Orange.

Now, as Rocky goes through the NDIS plan review process, he reflects on how his life has changed and what the NDIS has meant for him, his wife and their 12 year old twin sons. 

He reports that the care made available to him through his NDIS funding has been of great benefit to him and his family.

“The care is absolutely fantastic – you get more care,” Rocky said. “That is without a doubt better.

“If you’re not well and you’re in bed, you need someone to sit there just so you don’t have a blocked catheter and autonomic dysreflexia (a form of hypertension that can be life-threatening). To avoid that is really important – you don’t want to be on your own and not able to help yourself.

“Because the level of personal care I need is now fully funded, it allows my wife to go to work and that in turn reduces the financial pressure on us,” Rocky said.

Rocky is currently looking forward to undertaking some home modifications and receiving new equipment, especially his long-awaited bed – all funded through his NDIS plan.

Using his NDIS plan

Rocky’s NDIS supports have helped her/him:

• Access the personal care he needs
• Free up quality time with his family
• Reduce financial pressure on his family.

Many people who have family members with disabilities experience the sadness and frustration of being so busy in their support roles that they can’t enjoy the pleasures of family life.

For them, the benefits of the National Disability Insurance Scheme (NDIS) can be truly transformative.

So it was for Narissa Phelps, whose son Joshua has lived with bipolar disorder from the age of 16.

“His condition came on when he hit puberty, and for the next 20 years until he joined the NDIS his life was incredibly restricted,” Narissa says.

“He experiences social anxiety and has never worked. He struggles with going out and rarely initiates activities on his own, including housework and meal preparation. Josh’s diet was both limited and poor.”

Joshua, who is now 37, is the eldest of Narissa’s children and lives close to her in the northern NSW town of Lismore.

“He lives in his own one-bedroom unit and for years it was up to family to keep him on track,” she says. “It was so hard to see him living in squalor, and he resented me trying to keep order and cleanliness in his life.”

Joshua’s journey since he joined the NDIS has been life-changing, both for him and his family.

“Now he has a support worker go around to his house three hours a day, six days a week. They help him with housework, work out weekly menus, take him shopping, play board games with him.

“His unit stays clean and he has several good meals a week. On top of that, someone comes over every night at 6pm to make sure he takes his medication.

“Every now and then support workers will take him out bowling or for a game of pool, which he loves. The workers are predominantly males around his own age, so he’s having fun with peers that he lacked previously.”

Joshua gets to have social time in the wider community while Narissa, her other son and Joshua’s father get to enjoy time with him free of distractions.

“I can finally enjoy a mother-son relationship,” she says.

Narissa’s personal experience has reinforced her sense that the NDIS has made “a huge positive difference” in the lives of many families that she knows.

“I’m retired now but I used to support students with disabilities at the school where I worked. I see my old students around town and it’s clear that they’ve blossomed so much under the new system.

The NDIS provides Australians under the age of 65 with a permanent and significant disability the supports they need to live more independently and to increase their social and economic participation.

The NDIS has provided support to more than 104,000 people across NSW. There are more than 300,000 people who have benefitted from the NDIS nationally, including close to 100,000 people who have received support for the first time.

It has been one year exactly since Lachlan Reardon got his first NDIS plan. Soon to turn 11-years-old, this local Mudgee boy has come a long way in a single year.

Lachlan lives with mild muscular dystrophy. He has hyper flexibility and low muscle mass. He’s always struggled with lack of balance, which has impacted on his ability to play sport.

“Due to his condition, Lachie has never been able to ride a scooter or bike like other kids his age,” explains his mum Deborah.

“With his plan in place, Lachie has been seeing an occupational therapist (OT) and a personal trainer for a year now and he’s definitely improved,” she said.

“They are working on his core strength and he’s really been enjoying the personal training sessions.”

Lachlan’s main goals in his first plan were to tie his shoelaces, ride a bicycle and a scooter. One year down, and he has smashed all three! Tying his shoelaces – tick! Riding a scooter – tick! And now, just recently, Lachlan’s perseverance paid off when he learned the art of two-wheeled balance and started to ride a bike. Tick! Tick! Tick!

“It’s given him such confidence,” Deborah said. “He’s just so proud of himself, and of his achievements. As his parent, I thought he’d never ride a bike. I was nearly ready to give up.

“In our family we never say we can’t do something. We say, it’s something we’re trying to do. We might not be able to do it now, but one day we might be able to do it, and this experience has shown Lachie that this is very true.”

Lachlan goes to a mainstream school and earlier this year they had their first school camp.

“It was the first time Lachie has ever been away from home,” Deborah said. “He went for four nights and they camped by the water. At that point, Lachie was the only one out of the 100-plus kids attending who couldn’t ride a bike. Next year will be a different experience for him.

“I think he’ll really take off this year, just because his balance is better and his confidence has grown.”

“At the beginning I felt guilty about being on the NDIS because Lachie just looks like a normal little boy.

“Now I realise there’s kids on the NDIS with behavioural problems and other things you can’t see, and as he gets older I can see the huge difference having the NDIS plan will make.

Access to these treatments is going to make a huge impact to his quality of life. It will make all the difference,” Deborah said.

Using his NDIS plan

Lachlan’s NDIS supports have helped him:

• Learn how to ride a bicycle and a scooter
• Learn how to tie his shoelaces
• Improve his balance
• Feel more confident