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.”

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.”

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.”

Jacqui and her father Don (pictured here with LAC Cindy at left) have overcome the sorts of odds that would have defeated most people many times over – and still come up smiling.

The story begins in 1980 when, as a 15 year old, Jacqui was a passenger in a car that collided with a parked truck. Jacqui suffered severe head injuries and after three years in hospital, she emerged with brain damage and the loss of sight in one eye.

“Jacqui had to learn how to speak again and to this day has poor balance, no sense of smell and limited taste,” Don says. “Her right arm is useless and her right leg is very slow.”

Dreams put to one side

Jacqui’s dreams of becoming a hairdresser had to be put aside and instead she found work at a Sydney-based disability enterprise.

Her mother developed Parkinson’s Disease just a few years later and Don took on the role of carer for both of them until his wife’s death 12 years ago. The family moved to the Gold Coast in 1987 and they have lived there ever since.

“Apart from Jacqui’s placement at a local disability enterprise we received no other support to help with her care,” Don says.

“However, one thing the NSW Government did do was let us know that the National Disability Insurance Scheme (NDIS) was coming, so we got an application in early and Jacqui got accepted.”

Jacqui’s pre-planning was done with the assistance of Tweed-based Social Futures Local Area Coordinator (LAC) Cindy, and Jacqui received her First Plan in July 2017.

“Jacqui’s initial plan didn’t have much extra funding for respite care but there was enough in there that at last we could see light at the end of the tunnel,” Don says. “I was 82 at that stage and for the first time I had the sense that there would be ongoing support for Jacqui after I’m gone.”

From bad to worse

In October 2017, Don had a crash and wrote his car off. Then in January 2018 Jacqui had two falls that saw her taken to hospital for a check-up. When Don came to collect her from hospital, she fell again – and this time broke her ankle badly. Since then Jacqui has needed a wheelchair to get around.

The final blow came in June 2018, when a faulty home air conditioner caught fire and the family house burnt down. Jacqui and Don escaped with just the clothes they were wearing and both wound up in hospital.

“The house was insured but we basically lost everything,” Don says. “We’ve been living in temporary accommodation ever since.”

New plan, fresh hope

Luckily Cindy had put in place a review of Jacqui’s plan after her January falls, and the revised plan now provides funding for in-home care seven days a week as well as funding for cleaning and out-of-home activities. Her plan has also funded a new foldable wheelchair, a walking stick and daily adaptive equipment.

“Australian Unity provides the support workers and they’ll be able to keep supporting us when we move back to Sydney to be close to my other daughters, while our house is rebuilt,” Don says.

“Thanks also to the fabulous staff at Social Futures’ Tweed office, who rallied around and bought us a hamper after the fire. It was a wonderful gesture and helped keep our spirits up through a really tough time.”