Just a few years ago, Tammy had reached the point of considering moving into supported accommodation due to the impact of her disability.

The long-term Forbes resident was increasingly isolated and incapacitated by Devic’s disease, caused by the inflammation and de-myelination of the optic nerve. This leads to progressive weakening of the legs and hands, and vision impairment.

“It came on about 10 years ago when I was in my mid-30s,” Tammy says. “I thought it was just a pinched nerve, until one day I collapsed on my front steps and wound up in hospital.

“I was fortunate enough to be seen by a neurologist who had experience of the condition – too often it gets misdiagnosed as multiple sclerosis.”

After that Tammy’s condition continued to worsen to the point that she had to stop teaching music and also cease working as an office manager for a friend’s business. With no family support and no means of supporting herself, five years ago Tammy reluctantly signed up for the Disability Support Pension.

“Luckily I have a lot of support from my Uniting Church congregation which helped me through the worst times,” she says.

Choice of supports

A couple of years ago Tammy heard about the National Disability Insurance Scheme (NDIS) and decided to apply, and was accepted straight away. Her First Plan was agency-managed but, with increasing self confidence, Tammy has now appointed a Plan Manager for her Second Plan which widens her choice of supports.

“My Local Area Coordinator, Belinda Separovic (from NDIS Partner Social Futures), has been great with referrals and emotional support,” Tammy says. “There have been rough patches where I’ve had to contact her a lot, and she always tries to find the answer for me.

“With my First Plan I was able to access occupational therapy and physiotherapy. The OT helped me get my first-ever electric wheelchair, which I really needed, and the physio designed a proper exercise regime for me. They’re heaps better than the online exercises I’d been trying to follow!

“My Second Plan now includes 20 hours of funded support every week and I’ve been able to employ four support workers with the help of my Plan Manager. They provide personal care, clean my house, maintain my garden and will soon be able to take me out for community activities.”

Back in the groove

Tammy can still drive but recently purchased a wheelchair-accessible van, which means her support workers can take her out to do the shopping or go on social outings.

“My vision is good enough to drive but mostly I just don’t have the confidence anymore,” she says.

Now that she has enough support to stay in her home, she’s hoping to get back to work.

“I teach piano, guitar and drums, but realistically I don’t have the energy to get back to what I used to do. However, now that I have support it would be nice to teach at least a few clients.

“With help from my physio, I’m also hoping to regain at least some mobility. But mostly, I’m just very happy feeling safe and secure in my own home.”

Tammy’s NDIS supports have helped her:

• Buy her first electric wheelchair
• Develop a personal exercise program
• Stay in her own home

When Zac Oatley moved to Yamba on NSW’s North Coast with his family two years ago it was the start of a new life in more ways than one. Not only was it a change of scenery from his native Queensland, it was also the start of his National Disability Insurance Scheme (NDIS) journey.

The 10-year-old schoolboy has cerebral palsy and is quadriplegic, complicated by dystonia – a neurological condition that causes muscles to spasm involuntarily.

Mum Crystie says that since the move and the start of his NDIS supports, Zac “is one happy kid”.

“Moving to Yamba has been a great experience for Zac,” Crystie says. “He’s now in Year 5 and being really well supported at school in a mainstream class. 

“Zac physically can’t do much, including feeding himself. However, his verbal skills are slowly getting better and he understands most of what you tell him.

“He enjoys socialising but he’s got his own way of letting you know when he wants ‘alone time’!”

Support worker of choice

Crystie manages Zac’s NDIS plan herself. After two years, she finds that self-management brings many benefits, such as flexibility in choosing the support worker of her choice.

“I met this gentleman back in 2017 when we were both undertaking a Certificate III Individual Learning Support course at TAFE. He’s basically more of a mate to Zac than a carer and Zac loves him. They’re always going out to the beach, to the skatepark or the shops together.

“Zac’s happy and I’m happy. After all these years of struggling to fund Zac’s care through working multiple jobs and not having a spare minute, finally my husband Ross and I can have some time for each other.”

NDIS funding has also allowed Crystie to purchase a range of assistive technology for Zac including an electric wheelchair, a standframe, a walker, Eye Gaze communication technology, orthotic shoes and bath aids.

Other supports include speech therapy, physiotherapy and occupational therapy, all organised with the help of Social Futures Local Area Coordinator Susan Knight.

“We’re working on building his independence and eventually we’d like to build the ‘Zac house’ to cater to his long-term needs,” Crystie says.

Crowdfunding campaign

In the meantime the focus is on Zac’s upcoming femur rotation surgery scheduled for July this year, a procedure that will allow him to straighten his legs for the first time.

“Zac is a tough cookie but the recovery period is going to be six to eight weeks, so it will be challenging. However, the payoff will be that he will be able to walk much better.”

Zac’s third Plan begins in May and the family is simultaneously running a crowdfunding campaign to finance extra equipment for when Zac gets out of hospital, such as a heated spa for hydrotherapy and a hi-lo lift bed.

“Our aim is to raise $12,000 and we’re well on our way,” Crystie says. “After all this time, we’re finally able to look forward to the future with confidence.”

Zac’s NDIS supports have helped him:

• Become more independent
• Access therapeutic supports
• Purchase a range of assistive technology
• Enjoy more quality family time

Katy is the apple of her parents’ eye but they don’t shy away from the tough times they have experienced in raising her.

Now 30 years old, Katy has a significant intellectual disability and other medical issues and has required 24/7 care for her entire life. For virtually all of this time the caring responsibilities have fallen on mum Jen and dad Neil.

“Katy requires full-time care and help with most daily living tasks,” Jen says. “This means she cannot live independently, or access community events and social situations by herself. Her options have always been severely limited and she’s been fully dependent on us for everything.”

With the assistance of Local Area Coordinator Arwen operating out of Social Futures’ Tweed office, last year Jen and Neil were able to set up Katy’s first National Disability Insurance Scheme (NDIS) plan.

Connecting with peers

“The NDIS can be a challenge to negotiate but it’s doable,” says Neil. “Now that Katy’s a participant, it has completely changed her life.”

Katy’s NDIS funding has enabled her to attend a “great” disability day program with Coolangatta-based service provider Lifebridge, four days a week. She engages in swimming, art, sports, recreational activities, community access, team games, and most importantly, connecting with peers to form friendships. 

Her artwork has also been featured in an exhibition organised by Lifebridge.

“Katy’s been so much happier gaining more independence, and her self-esteem has greatly increased,” Jen says.

Working on wellbeing

NDIS funding has also meant Katy can get additional visits from a physiotherapist and a dietitian, which have improved her overall health.

Another very significant outcome has been the in-home care that Katy has been able to access. She’s started the journey of living independently from her parents, in an appropriate and stress-free way thanks to the NDIS funding.

“Katy’s quality of life has improved dramatically,” Jen says. “It would not have been possible without this funding.”

Katy’s NDIS supports have helped her:

• Participate in community activities
• Form friendships with peers
• Develop her artistic skills
• Improve her health
• Access in-home respite care