The National Disability Insurance Agency’s Maryanne Diamond, General Manager Media, Communications and Engagement Division, has been announced as one of four finalists in the 2017 Victorian Australian of the Year Awards.
NDIS participants and their families talk about their futures
“We knew the real Caitie but no one else did because she was so self-conscious about her speech.”
"We just like the idea that she’s independent – if she wants to do something she should.”
“It has helped her become more resilient and is building on her confidence when dealing with the many types of people she encounters.”
“One day I said to the kids ‘come on, let’s go to town’. That was the first time in three years I could take my kids out on my own because my confidence had improved so much.”
“We’ve been through some tough, sad times,” Nada says, turning to her son. “But we’re riding them through, aren’t we?”
“I’m able to go to work without worry and Maria can too. We’ve built up a great support network and thanks to the NDIS life is so much better now compared to before.” Kezia’s Dad Aldrin.
“Even though Jack has exited the NDIS, I’ve been reassured if we ever need help again, the Scheme is always there, and that is very reassuring.” Jack’s Mum Bree.
“We all need some help sometimes and the NDIS can help,” Kirby says.
‘By maximising early intervention parents can see what their child might be capable of. The NDIS allows that potential.’ William’s Mum Haidee.
‘I have always worried about whether I was going to live long enough to care for him and worried about how he would cope without me. Support was fairly non-existent for Duncan before the NDIS.’ Duncan’s Mum Meredith.
So caught up providing the best care for nine-year-old daughter Kezia, who has profound disability, Aldrin and Maria Dias could not visit family overseas and found it increasingly difficult to see friends or even leave their home.
But now, as part of the National Disability Insurance Scheme (NDIS) trial in Perth Hills, Mr Dias cannot believe how good life is compared to two years ago, not only for Kezia, but also for he and his wife.
Receiving appropriate equipment and funding for two support workers has been life changing.
“After eight and a half years I finally got to visit my family and friends in India,” Mr Dias said.
“With Kezia, we were spending all our time, all our life, looking after her. What we didn’t realise was her care was consuming us, we weren’t living life for ourselves,” he said.
“Now my wife and I can enjoy activities together, and we feel confident leaving Kezia because we know she is in safe hands.”
Feeling there was no option but to give up their own lives to provide Kezia with adequate care, Mr and Mrs Dias felt confined to their home with no significant help in sight.
“We had our eyes and ears on Kezia 24/7,” Mr Dias said. “If she woke up before 1am, Maria would go to her and if she woke up around 3, 4 or 5am, I would go to her – we took shifts,” he said.
Prior to the NDIS, the family received some respite for Kezia but were told there was a long wait for additional support.
“The help we got prior to the NDIS was good but it was on a much smaller scale and very limited,” Mr Dias said.
“But now, with the NDIS, we’ve been able discuss and address Kezia’s needs, and ours, and work out a plan which has really helped to improve all of our lives,” he said.
“I self-manage Kezia’s NDIS plan. This means I’m in control of her supports and I can employ who works with my daughter, what supports she needs and where those supports are delivered. The NDIS is much more streamlined and the equipment we’ve been able to receive has been such a help.
“Before the hoist came, the carers had trouble shifting Kezia but in the past six months (with the hoist) it is much easier.”
Most importantly, Mr Dias said, Kezia is much happier now evident through her attention and smiles.
“Kezia gets a lot of regular therapy, including physio, and I’ve even got the physio’s teaching her carers the exercises so they can continue to do them with her when the physio is not there,” he said.
“I’m able to go to work without worry and Maria can too. We’ve built up a great support network and thanks to the NDIS life is so much better now compared to before.”
Thanks to the National Disability Insurance Scheme’s (NDIS) focus on early intervention, five-year-old West Australian Jack Bloch is “skyrocketing ahead” with his speech, writing, recognition and motor skills, so much so he is now age appropriate and able to exit the scheme.
Jack joined the NDIS two years ago at age three, and proud parents Bree and David said catching his developmental delays early has made a massive difference to how their son now functions – like every other child his age!
“As first-time parents we didn’t know which way to go,” Bree said. “We didn’t know what Jack needed or what he didn’t need, so having the NDIS there to help us develop an action plan, then review it, to see if he had developed or if he needed extra help, was great.”
The couple said the range of NDIS registered therapists they could engage was huge.
“In the old system, contacts were limited and it’s hard to get in but being a part of the NDIS, we actually got access to a lot of services, and we got to choose which one we wanted – Therapy Focus – and they were just fantastic.
“Now Jack is five. He’s in pre-primary and doing really well, and thanks to regular speech and occupational therapies, he has skyrocketed ahead with his speech and writing and recognition skills, and he’s up to speed with his gross motor skills.
“Jack’s teachers are really happy with him too,” Bree said. “And being able to show them his NDIS plan on paper made a world of difference.
“Last year we showed his kindy teacher what we needed to do to get him up to speed. She was so supportive. She put activities in place and even got involved with his therapists!”
Bree said this year, Jack’s pre-primary teachers are just as enthusiastic.
“They saw his plan and they’ve put activities in place to make sure he maintains where he needs to be. His teachers also said what they’ve been able to implement in the classroom for Jack not only helps other children, it also helps better educate them.
“We’re actually really thankful for the support we’ve been able to receive and now Jack’s functioning at an age appropriate level, he can be signed out from the NDIS!
“We thought we would have a much longer road ahead of us but it just goes to show early interventions do make an incredible difference in a child’s life,” Bree said.
“It is an absolutely incredible result for Jack, and for us as a family, but on the other hand it’s a bit sad in a way. We’ve been working with the NDIS and Therapy Focus for the past two years. They’ve been a big part of our lives, they’ve become like family and we will miss that contact.
“Even though Jack has exited the NDIS, I’ve been reassured if we ever need help again, the Scheme is always there, and that is very reassuring,” Bree said.
Kirby Littleys’s story
Kirby Littley loves spending time with her family and friends, watching movies and listening to music, heralding the beats of Lady Gaga among her favourites.
For the past decade Kirby, 30, has devoted her career to teaching children with disability at Barwon Valley Special School in Geelong.
“I love teaching. It was what I was meant to do,” Kirby says.
“I began teaching early years and went onto middle years. Each of my students were individuals and all had different needs.”
Two years ago, Kirby was diagnosed with a brain tumour and was admitted to surgery within six hours of diagnosis.
Kirby had multiple strokes after surgery and woke not able to move, walk, eat or talk.
After beginning therapy, Kirby was released from hospital and sent to live in a nursing home for twelve months - a place where she felt “lonely and scared, especially at night”.
However, she never doubted she would get home and that hope kept her determined.
“Mum and Dad were instrumental in keeping this hope alive. Hope is what drove my rehab,” Kirby says.
William, 5, from Mount Barker in South Australia (SA) loves The Wiggles, singing and exploring the world around him according to his mother Haidee.
‘William is so excited to explore the world, he gets up and pulls everything out of the cupboard, everything out of the dishwasher, his newfound freedom has opened the world to him and he’s into everything,’ Haidee said.
‘He has spent the last five years of his life needing us to facilitate absolutely everything, now he is just loving doing ordinary kids things.’
William became an NDIS participant in 2013 and is growing in leaps and bounds which Haidee says she puts down to the NDIS. ‘To be honest if we were not in the Scheme now William would not be walking,’ Haidee said. ‘The NDIS has without a doubt enabled him to become independent. We now have a child who walks, who with adapted fonts can communicate, who can now use sign language to communicate, all because we’ve got enough therapy to focus on his needs intensively.
‘William’s got a voice now, a say and a place in the world because he can control his world.’
‘We have choice and control now and we get a say in what our son does. William is now developing in a typical way as a child does with confidence in the world.
William, who has Wests Syndrome and an underlying rare chromosome deletion, is currently transitioning to his local mainstream school which he attends one day a week and plans to transition to full time next year.
‘Before the NDIS he wouldn’t have coped. We would have been restricted in our choices. I’ve been really impressed with the NDIS. The people we deal with have lived experience of disability and believe in what they are doing.
‘By maximising early intervention parents can see what their child might be capable of. The NDIS allows that potential.’
Prior to the NDIS Haidee said she had little control over the support William received which was instead determined by service providers.
‘We would see a speech pathologist and an occupational therapist once a month…we would see different therapists so there was no consistency, nothing was integrated and no one communicated.
‘With the NDIS everyone collaborates and works together with the child and we do it intensively three hours a day, which sound like a lot but it gets the results.
William’s communication pod device provided by his NDIS funding means that William can now ‘say everything’.
Haidee said since joining the NDIS William and his family are able to participate more in the community, going out for dinner, playing at the park and shopping at the supermarket.
‘Now I feel like I can enjoy William, I can see the person behind the disability all the time and I now know what William wants because he can communicate that to me and I just can’t tell you how much that takes the pressure off.
Since becoming an NDIS participant in Tasmania, Duncan who turned 21 in June, has found a new level of independence.
According to his mother Meredith, Duncan is a happy go-lucky guy who is ‘interested in music, partying and a range of sports’, which makes him very much like any other young adult. And like most young adults, Duncan, who has Down syndrome, now has a part-time job, working 10 hours a week at the local laundrette where he is responsible for folding and sorting.
‘He’s very excited when his pay slip arrives,’ Meredith says. ’The NDIS has given Duncan the opportunity to have independence away from me to do activities’ including paid and voluntary work, social and sporting activities.
‘He seems to be thoroughly enjoying it.'
Duncan’s independence has been extended by his self-managed NDIS plan which includes a communication device set up with a speech programme to help him communicate and organise supports for weekend social and sporting activities.
‘The fact that Duncan’s plan can be revisited if necessary under certain circumstances has lifted a certain weight off my mind,’ Meredith says.
‘This is something that has been on my mind since Duncan was born I have always worried about whether I was going to live long enough to care for him and worried about how he would cope without me. Support was fairly non-existent for Duncan before the NDIS.’
By Peter Hanlon
With apologies for the indulgence, I ask Maryanne Diamond what she’d say to a friend’s children who’ve grown up sighted, are now in their teens, and have been told they won’t be able to see beyond their 20s. She answers with her renowned conviction. “I’d tell them it’s okay to be blind, it’s fine to be blind. You just might do things differently. Sometimes things are frustrating, but it’s not the end of the world.”
Few have lived this better. Robyn Gaile, who shares Diamond’s passion for braille, red wine and humour, believes her friend of 20 years needs only to commit to doing something and it’s as good as done. “If Maryanne decided tomorrow she was going to climb Everest next week, she’d do it,” Gaile says. “She’s just a force of nature. Once she makes a decision she truly does it.”
Kerri Laidlaw, who would read to Diamond when her big sister came home from the school for the blind at weekends, remembers feeling protective of her despite being Maryanne’s junior by four years. Then she would hear her sister reciting every station on the train ride into town, or giving directions as Laidlaw drove her home in her university days. “I realised she was independent from a very young age, even more than I was.”
David Blyth AO, who Diamond treasures as a mentor who taught her to pick her battles hails her as someone who has grown enormously every time she’s put her head on the block by accepting still greater responsibility in myriad advocacy roles. Blyth was the first Australian elected president of the World Blind Union. In holding the post from 2008-12, Diamond was the second. “No other country has produced two World Blind Union presidents,” Blyth says. “And it had to be someone like Maryanne to achieve that.”
In 2014, Diamond was made an Officer in the Order of Australia. Her latest in a veritable pool room’s worth of accolades is the Louis Braille Medal, the most prestigious honour the WBU accords. It acknowledges her leadership in the Marrakesh Treaty, a landmark shift in copyright restrictions geared towards ending the “book famine”. At its heart, accessible versions – braille, audio books, large print, etc – of literature will be made available to the world’s blind and visually impaired, less than seven percent of whom have hitherto been able to enjoy this fundamental resource.
The process took five years from proposal to adoption (Diamond points out it’s far from complete despite garnering the required 20 ratifications on June 30). Her cool pragmatism in the face of head-spinning bureaucracy and countless roadblocks at draining conferences around the globe are testament to her skills as a negotiator. Blyth points to her use of humour, the social relationships she builds to bring others on side, all with an eye to the greater goal.
“The way she conducted that campaign to WIPO (the World Intellectual Property Organisation) for the book treaty, that was five years of fantastic strategy,” Blyth says. “It was interesting that the world allowed her to be the leader – there were some big agencies involved in that, but they passed over the baton to her. They knew Maryanne was the best person.”
Robyn Gaile thinks her friend “popped out of the womb knowing who she was”. Diamond chuckles in demurring, pointing out that she was surrounded by career-minded people at school yet didn’t share their fully-formed ambition. “But I think part of that was because I was a person with a disability who had been given fairly low expectations by others about what I could do.”
Aged 12 she was told she might consider becoming a telephone operator and thought, why would someone say that to me? “I didn’t even know what it was.” Kerri Laidlaw remembers her sister as strong-willed and studious, a hard worker who picked up braille quickly. Neither can recall the novels they read, although Laidlaw says there wouldn’t have been anything frilly or romantic. She has an abiding memory of thinking braille gave you an advantage because her sister could read under the covers on cold nights.
The second child of five, Diamond boarded at a school for the blind through the week, initially in Brisbane and later in Melbourne, from the age of four. Her first school accommodated deaf and blind children; she remembers being “absolutely terrified of these people who were deaf, who made really strange, loud noises”. She told her sister of another noise in the night – the sobbing of small children.
“That was what the so-called experts told my parents, what they told everyone,” she says of being sent away so young. “My parents wouldn’t have liked it, but they had lots of children, not a lot of money.” Laidlaw imagines the separation was hardest on their parents above all. When the sisters had children of their own they had the conversation, “How could you take them away?”
Diamond reflects more on what she got than what she missed out on. “I made friends, some I’m still friendly with. I learnt very good blindness skills – braille, how to move around the community, to touch type. I wasn’t that unhappy, but I did wish I lived at home.”
She thrived at university while noticing that “many of my friends did the opposite”. She studied mathematics, figuring she could excel without reading books. Told she’d fail maths because she was a woman she bristled, “I’ll be doing what I want to do.” It didn’t strike her as sexism at the time, merely the way the world was. “Women did certain jobs, men did certain jobs, advisors put you in those pigeon holes. Having a disability that was more natural.”
In subjects such as psychology or philosophy she would simply record the lectures and play them back. Maths, where textbooks weren’t written in an accessible form and so much information was presented on a board, was harder to negotiate. Diamond would have peers read their notes to her while she converted them to braille, a cumbersome process that relied on the messenger being smart enough to take the right notes, and not so gifted that their summation was virtual shorthand. “People were always willing to do it … I had a little network, certain times on each day,” she says of a system that doubled the hours for all involved.
One helper was Neil, who Diamond would marry.
Their coupling hinted at a second piece of lasting advice given by Blyth: smart people employ smarter people. “We have similar interests,” she says of her husband. “Someone who was smart was an attraction to me. And someone who didn’t care that I was blind. Some people don’t get past that barrier, whereas Neil and his family, that was never an issue.”
Growing up she’d blanched at the idea of having children. “Now here I am with four.” Diamond never worried that her blindness would be a barrier to parenting, and was told by experts it would not be inherited by her offspring. When their eldest, Mitchell, was born her doctor looked at his eyes and, distressed, told her the diagnosis had been wrong. “She was really upset about it. I was like, ‘At least it’s not a heart condition. He’s not going to die.’”
The odds of further children being visually impaired were upped to 50 percent, but they didn’t hesitate to add Lachlan, Callum and Briellen – all of whom are fully sighted – to the brood. “I had this attitude, ’50-50, they’re not bad odds.’ But also, ‘it’s not the end of the world.’”
Mitchell is now 30 and works as a data scientist for Neil’s consulting company. He is legally blind, although intervention surgery as a child left him able to read books if he holds the page close and the print quality is high. Diamond describes him as more laid-back and not as good a self-advocate as she is. “I can say this because I’m his mother.” She knows that having some vision has been its own burden, “because you sometimes want to pretend you don’t have this problem”.
Diamond had floated in and out of the fledgling IT industry from the late 1970s through to the late 1990s, and with three children under five faced a new challenge when Neil spent a sabbatical at the University of Wisconsin. Over two stints living in America she encountered inconvenience and frustration she’d never known, when simply moving around was a stressful, draining exercise.
“I did silly things,” she admits of a move that would have daunted any parent. “I land in a country with a four-year-old, a two-year-old and a three-month-old – the four-year-old being quite blind – and I’m in a city where I know no-one and the cars drive on the wrong side of the road. In winter when it had snowed I’d get on the bus, and because I was too scared to cross the road I’d stay on until it went right around and came back. I look back and think I must have been crazy.”
Underfoot, snow made footpaths indistinguishable from roads. Hats worn for warmth made it hard to hear. Aged two Lachlan became her eyes, finding buses, making sure traffic lights were safe to cross at. “Big responsibility for a two-year-old.”
She plays down her career shift into advocacy upon returning to Australia as something anyone who believes they can make an impact would do, says it’s not as if she’s been fighting battles solo. “What I think I can do is identify who you need and what roles they play and work the team.” Robyn Gaile concurs. “What she’s so good at is saying, ‘This needs to be achieved, who are the stakeholders, what are the parts that need to come together, what are the influences, what are the levers?’ She’s great at bringing teams around her, and extremely good at picking the right people.”
Gaile adds that for one of the busiest people she’s met, Diamond is also incredibly efficient at returning emails and phone calls. “She knows how to prioritise and get things done.”
Diamond says she both hates and enjoys the political process, admits the United Nations “drives you crazy, but you get caught up in it”. Negotiating the Marrakesh Treaty, taking one step forward only to be lassoed by red tape and dragged two steps back, she envied British colleagues who lived barely an hour from Geneva. “I’d sit on the plane for 24 hours wondering why I even did this.”
She is adamant disability can’t be retrofitted, “you’ve got to put everyone in from the beginning”. Having a position and an argument are mere building blocks of advocacy, “you’ve got to be smart in how you get that message out and who you get it out to”. Knowing which of the 186 UN member states to focus on was key to getting the Marrakesh Treaty up, and made the night in June 2013 when it was finally adopted so sweet.
In anticipation of her diary opening up in late 2015 without all of that flying about the world, she left Vision Australia after seven years and added general manager of media, communications and engagement at the National Disability Insurance Agency to her CV. She is the most senior person at the NDIA with a disability, and committed to communicating the message that this is a journey that will take time yet ultimately change lives.
“The NDIS is about putting people in charge of their own lives – empowerment, decision-making, choice and control. That’s a really big shift. Any transformational change has problems – you don’t press a button on day one and it’s all fine. I can understand the frustrations of the individuals who personally have been finding it difficult. For many people with disabilities life’s always difficult. To add change, to add unexpected problems, is adding a huge stress level to people who don’t need it. I have a lot of sympathy.”
During the week she lives in Geelong for easy access to NDIA headquarters, admits that’s been an unsettling change but essentially means only that she has two messy houses now instead of one. She and Neil have property at Lorne which they spend time at and enjoy regularly. Diamond insists she finds time for herself; Robyn Gaile notes her commitment to friends and family. “And she does get her nails done.”
The Louis Braille Medal is a cherished acknowledgement of her work as WBU president – awarded only once every four years, Diamond smiles to think that after a century she’ll be in a club of just 25. She doesn’t see herself as an inspiration, merely someone who gets on with it. “I could see why people might think, ‘She’s done all these crazy things, she’s done interesting things …’”
In a monumental understatement, Maryanne Diamond adds: “Some of them have worked out.’”
Nada Miller grew up in a family of eight in Tasmania’s north. Her father worked in forestry, and at home everyone pitched in to farm their 80 acres, growing vegetables, bringing livestock from paddock to plate. “When you had a big family, you just did it.”
At 16 they moved to Bridgenorth on the West Tamar. Playing badminton a year or two later she met Ian, the son of farmers and orchardists who were as deeply rooted to the area as their apple trees. They were married for seven years before Narelle arrived, and when a sibling was even more elusive they took in foster children.
“We had them straight from hospital, which I loved,” Nada says. Sometimes the children were older; they fostered around 30 in all, for roughly six months at a time. Giving them back could be heart-wrenching, but seeing them go to families who were aching for children of their own was a warming reward.
When Narelle was nearing her 20th birthday Nada fell pregnant again. “I was 48 when I had Aran,” … I really believed it happened for a purpose, that he’d be fine,” Nada says. “And he is fine. We’re very blessed to have him.”
Tests were taken and sent off to Adelaide, and two days after Aran’s birth he was diagnosed with Down Syndrome. 'They knew little of the genetic condition; Nada admits it took time to adjust, but Ian was unperturbed. "He’s our little boy," Ian said, “and we love him to bits.” She soon fell back on the doggedness that underpinned her upbringing. “That’s what you do – you put one foot in front of the other and get on with it.”
Aran is now 22, and they’ve got on with it very well. In July he swam in the World Down Syndrome Swimming Championships in Florence, won nine gold and a silver medal, and added to a growing haul of world records. Bundle in his bounty from previous world titles – in Mexico two years earlier and Italy in 2012 – and he’s won 20 gold medals representing Australia on the world stage.
His story runs deeper than the spoils of sport. Observers point to Aran’s motivation to excel in the pool, his joyful celebration each time he does. Nada thinks standing on the dais singing the national anthem is his favourite thing about winning. His personal take on what he likes most about swimming is more soulful. “Just being in the water.”
In doing so with Launceston’s South Esk Swimming Club he has a profound impact on those around him. “There’s a word that’s thrown around a lot at the moment, that we’re ‘inclusive’,” club president Jayne Shepherd says. “I don’t think people truly understand what that means until you have someone like Aran come into your club.
“We used to pride ourselves on doing certain things that we considered ‘inclusive’. Catering for people of all abilities and backgrounds, we used to do that. Then Aran came into our club. It was like the blinkers came off. He didn’t deliberately do this – it was just from being involved and being the type of person he is. He’s allowed us to really understand what it means to involve all different types of people of all abilities in your club.”
In a personal aside, Jane Shepherd notes that getting to know Aran has enriched her 15 and 12-year-old children. This is fitting, as family is at the heart of his tale.
Ian and Nada Miller would eventually buy the bus company that still ferries children to school from all around Exeter, but Ian always had tractors and trucks for his work in land management and rehabilitation of sites such as old mines. In the early 1970s, with other young soon-to-be fathers he knew from Apex, he put his backhoe to use as they helped each other build in-ground pools. More than 20 years later that’s where Aran, aged three, first felt the power of swimming.
Nada recalls a school event at Georgetown as the day the spark was lit. “Aran didn’t come anywhere near the front, but he went up to the table with the winners expecting a ribbon.” She’s always been grateful to the teacher who gave him a red one (which Aran still has). “To me, it made him interested.”
At the inaugural junior Special Olympics, aged 10, he swam in a 50-metre pool for the first time. Nada feared he might not make it to the other end. “But he won easily.”
Now Aran swims in 50, 100, 200 and 400-metre events, with butterfly his favourite and best stroke. Being the only swimmer with a disability in a club with more than 160 members presents challenges, not least in seeding his races, but all are on board for his journey not just the victories.
They’re up at 5am for morning training and Nada reckons the car just about drives itself the half hour to Launceston. Jayne Shepherd hails her as “a pool Mum” who meets not only her obvious challenges, but the unique ones presented by a demanding sport. “She gets in to training every morning. We’ve got kids who complain about getting to early morning training who only live five minutes down the road.”
If it takes a village to raise a child, you need an entire community to send a swimmer around the world. Aran is the only Tasmanian is the Australian Down Syndrome Swimming team, and funding for international competition is virtually non-existent. Fundraising has been a team effort, from the Christian church Nada has attended “since 19-umpteen” to the South Esk Swimming Club, to local businesses around Exeter who have responded to letterbox campaigns. More than $10,000 is needed for each overseas trip, and Nada hails local woman Betty Tasker (“an amazing cook”) who hosts dinners at her home where meat, machinery, garden equipment, hand-made jigsaw puzzles and other donated goods are auctioned for the cause.
“People are so generous, amazingly so,” says Aran’s sister Narelle Howell, who is vice-president and a team leader at the swimming club. “It just blows your mind how people give so much when they have so little really.”
Ian was never one for travel, telling Nada someone had to keep the home fires burning. By July his long battle with prostate cancer had reached a critical stage and Aran made the trip to Italy unaccompanied by a family member. “He’d been at home – we had a hospital bed in our loungeroom, Hospice At Home came, would stay three nights a week so I could go sleep in my bed,” Nada says of her husband’s struggle. “All of a sudden, after Aran left for Florence, he just got worse.”
Narelle flew to Melbourne for Aran’s return, as a crowd and local media were mustered for a Launceston airport homecoming. At the airport in Melbourne, aching at her father’s decline, Narelle told her brother the grim news. “Having to tell Aran that Dad was dying, we might not see him again, that was really, really hard. Aran was on such a high from achieving so much, then coming home to that, it was so hard to adjust to.”
A cancelled flight then a mix-up with alternative arrangements heightened their agony; at length they were diverted to Devonport and Aran missed his homecoming party. But they reached the hospital in time to show his father his latest swag of medals. “I feel sad for him that homecoming wasn’t how he or we would have liked,” Narelle says, “but Dad was more important. Dad was so proud of him.”
Ian Miller died the following day. Asked what he’s found most challenging in life Aran says, “When Dad died.” They followed Hawthorn together, and ritually sat down each Friday to do their footy tips. “We’ve been through some tough, sad times,” Nada says, turning to her son. “But we’re riding them through, aren’t we?”
The National Disability Insurance Scheme (NDIS) has brought access to occupational support services that have broadened Aran’s social circle. “Monday I do drama and in the afternoons social,” he says. “Thursdays I go to the gym, then social.” Bus training with an eye to navigating Launceston on his own is another key part of the timetable.
Their early contact with the National Disability Insurance Agency (NDIA) featured discussion of what would be needed for Aran to one day have a place of his own. “Mum and I have talked about how that might look,” Narelle Howell says. “It couldn’t be done without support, without something like the NDIS there’s no way you could even entertain the thought.”
The first time Narelle took Aran to Melbourne for what have become regular trips to the football, he told her he loved it so much he wanted to live there. “That’s good,” she replied. “Who’s going to do your cooking and washing?” Aran has a girlfriend, Samantha, who he met when she was playing soccer at the Special Olympics. Through swimming he knows Michael and Taylor, the young couple with Down Syndrome recently featured on Australian Story, whose parents are concerned about their plans to have children. “As a mother I could see their concerns,” Nada says. “It’s a difficult one.”
Narelle shares her concern. In a recent submission detailing Aran’s achievements for Down Syndrome Awareness Week, she recalled thinking on that long ago day of his diagnosis that nobody could put him in a box with a label on it. Yet she also knows that, for example, Aran will never be able to drive a car, as much as he’d love to. “You tell your children, ‘You can do anything you set your mind to.’ But sometimes that’s not necessarily true.”
Wherever their journey takes them, they are grateful and proud. “I wouldn’t know what to do with myself if I didn’t have him,” says Nada, who recently made a DVD out of old Super Eight movie footage taken of Aran as a boy, when he was forever on the go, wandering off without a care or a backwards glance. “He’s certainly enriched our lives, for sure. I don’t know how you say in what way. In every way.”
Kylie knows first-hand the nuances of psychosocial disability, having been in hospital 34 times in the last three and a half years.
During this time she has seen this so-called “invisible” disability impact all aspects of her life - her confidence, independence, social inclusion, family relationships and everyday tasks.
The National Disability Insurance Scheme (NDIS) is a new way of supporting people with psychosocial disability.
While the NDIS is not a panacea, it can help people with psychosocial disability get the services and support they need to live better lives.
For Kylie, who joined the NDIS three years ago, the Scheme has provided certainty and continuity of funding for the supports she needs, as well as choice and control over who provides them.
In fact, the whole family – including Kylie’s husband Rodney and children Millicent, eight, and Ewan, seven – have benefited from her involvement with the NDIS.
“Having the extra support in place – including regular contact with a support worker, weekly check-ins from a coordinator, and encouragement to get out into the community and take part in group activities – has improved my mood and helped me engage more with my children and husband,” Kylie said.
Kylie’s NDIS plan funds access to a support worker for two hours a week to support her with ordinary activities including housework, shopping, and attending appointments.
“I need that control and independence; not to have things done for me but sometimes a little bit of assistance helps when I can’t manage,” she said.
More recently, Kylie has been able to access funding for transport.
“Now I can get to and from appointments by myself, which is really good for my confidence and independence,” she said.
“One day I said to the kids ‘come on, let’s go to town’. That was the first time in three years I could take my kids out on my own because my confidence had improved so much.
“They don’t get that engagement if I don’t have this independence, the kids were just so excited. For years I didn’t go anywhere by myself but now I can.”
Kylie regularly attends art classes organised through mental health and disability support organisation Wellways and recently showcased her work in a Melbourne exhibition held for Mental Health Week.
Kylie’s piece was a collage about destigmatising mental health.
“When I saw my work displayed it was such a good feeling. I didn’t win but mine was displayed next to number one so that was pretty cool,” she said.
Kylie recommends that anyone nervous about accessing the NDIS takes a support person and some pre-prepared questions to their first meeting.
“The next most important thing is finding a support organisation. I chose to go with Wellways and since then they’ve worked as an advocate on my behalf. They are very client focused.
“The biggest benefit for me is knowing what I can actually get out of the NDIS from a perspective of services rather than not understanding the whole process. My plan review really cemented the services that I needed and I’m really looking forward to my next review.
Kylie’s goals for the year ahead include continued engagement with her family, reducing social isolation by increasing community involvement and helping others as a peer mentor.
“Mental health touches more people than you think,” Kylie said.
“Your journey is your journey, it doesn’t matter who you are or where you’ve come from, everyone deserves to be here and if I can help just help one person reach out and reduce the stigma then I’ve done my job,” she said.
High school students with disability are receiving the support they need to prepare for work and community life as part of an Australian-first project.
The National Disability Insurance Agency’s school-to-work project gives students in Years 10 and above access to 150 hours of support focussed on achieving open employment in the community. Engagement director Kerry Stopher said the support was available to about 300 National Disability Insurance Scheme participants in the Perth Hills trial site and another 200 students would be able to access it when the trial site expands from January 1.
“This project comes at the critical juncture between childhood and adulthood when young people are making decisions about their future,” Ms Stopher said.
“Support is also available to students with very significant disability and behaviours of concern who never before thought work was an option,” she said.
Each student chooses an employment provider to develop a work preparation plan. The plan includes an in-depth discovery phase where an employment support worker gets to know the student at home, school, leisure and other settings to build a picture of what type of work would be a good match. Based on this plan, the student is supported to find and participate in a part-time job or work experience outside school hours.
“The project is less than a year old and we are already seeing it lead to meaningful work opportunities,” Ms Stopher said.
“Part-time work broadens social networks, develops personal pride and, if well chosen, provides meaningful activity that supports health and wellbeing,” she said.
“Unfortunately, people with disability are often at risk of not being meaningfully engaged. “This project aims to help address that and is a win-win — the student benefits as well as the broader community.”
Ms Stopher said the project was possible because of the strong support and involvement of students and families, National Disability Services, the Department of Education and service providers.
NDS transition to employment project officer Gaelen Williams said the school-to-work project was based on the methodology of a successful overseas approach known as the customised employment approach and discovery process.
“NDS is providing training in this customised employment approach to 22 providers that are part of this project, as well as NDIA and Department of Education staff,” he said.
“It is a new concept here in Australia and we are really happy NDIA has run with it. “We are seeing even more collaboration between provider organisations and some have joined forces to help NDIS participants.”
Department of Education principal advisor on the project Richard Sanders said the NDIA school-to-work project “played a vital role in complementing the work of schools in preparing students for work and life as an adult”.
Leanne Bridges’ daughter Ella, 15, joined the school-to-work project five months ago and has been working one-to-two hours a week at Chatterbox café in Kalamunda.
Ella, who has an intellectual disability, is responsible for tidying the café, doing the dishes and taking out the coffees.
Ms Bridges said Ella has also been learning how to interact with customers.
“It has helped her become more resilient and is building on her confidence when dealing with the many types of people she encounters,” she said.
“Ella expresses pride when she tells people she does work experience at the café and enjoys the praise she receives, which of course gives her more confidence.”
Ms Bridges organised the placement through a friend and the project pays for Ella’s support worker, who picks her up from school and assists, encourages and supports her with her tasks at the café. For Ella, the job comes with some unexpected perks such as taste testing new foods on the menu.
“I like working – it is fun and I make new friends,” Ella said.
At last year’s High Court Christmas party, Kirsten Busby stood alone on the floor of the Public Hall in Canberra while dignitaries and staff packed the various levels above her. As each word of Hark the Herald Angels Sing filled the room on its way to the distant ceiling, throats caught and hearts fluttered.
Asked to describe herself, Kirsten offers a window to the easy humour that flows between mother and daughter. “Mum says the Blind Soprano,” she laughs, before providing a more serious appraisal that does mother Sue, father Craig (“Buzz” to all), little brother Jamie and especially Kirsten herself proud.
“I suppose you could say I’m not very conventional. I don’t like being shoved in a bucket and told to stay there. I don’t like that much at all.”
Her 17-and-a-bit years are a veritable catalogue of supporting evidence. Like the story of four-year-old Kirsten honing her skills with a cane at a local market when her patience waned, so she decided to use the stick to forge an escape route through the crowd. “I was poking all the grandmas in the back, telling them to get out of the way,” she says. “They were going too slow and I was a bored four-year-old!”
Or the pre-schooler who couldn’t fathom why she shouldn’t take part in running races with all the other kids, resulting in a panicked phone call home after a collision with her best friend. “That was a great black eye, that one,” Sue says of a scenario – and injury – that would become so commonplace as to scarcely raise an eyebrow.
Or the little one on a midnight flight to Sydney who cried all the way because she wasn’t allowed to go exploring down the aisles and into the cockpit. “She’s very inquisitive,” Sue says.
Or the time in primary school when Kirsten decided there was no reason she couldn’t add dance to her burgeoning musical repertoire. “I learnt from a very young age, I’ll audition for things and be like, ‘I’m blind and I’m willing to learn.’ Even if it involves me attempting to dance, I will try!” And so she spent three years “winging my way through” a dance group. “Because, why the hell not?”
Her latest rapid-fire achievement has been bonding with Violet, the Labrador who has joined Leah the Rag Doll cat and Frank the initially-miffed Pomeranian in the Busby household in suburban Canberra. Barely three weeks elapsed between day one of training and medallion-wearing graduation; trainer Felicity Gates from Guide Dogs NSW/ACT hails not just Kirsten’s familiarity with the environment she inhabits, but how smoothly she passed that knowledge on to Violet.
With school done for another year and Violet settled in, Kirsten reckons things are quietening down. That said, there are two Christmas Eve performances at St Paul’s in Manuka – one with the choir, the other a solo airing of Haydn at midnight mass. And in early January she’ll head to Sydney for a third stint with the Australian children’s choir Gondwana, leading into a fortnight with the National Choral School. And there’s Year 12 to prepare for with a mix of nerves and excitement.
She’s keen to get Violet in the gym and used to her pilates class, and get stuck into some cardio on the spin bike. But other than that, yes, things are pretty quiet.
“Buzz and I have always had the attitude that if Kirsten wanted to climb Mt Everest she should,” Sue says. “The guide dog might get a bit upset about that, but she should do it. We just like the idea that she’s independent – if she wants to do something she should.”
When Kirsten was a baby Sue’s mother noticed that her granddaughter didn’t look at her while she was being bottle fed. At three months the diagnosis was Hypopituitarism – in the first phase of pregnancy her optic nerve had failed to develop due to a pituitary gland issue. Sue calls it “a hiccup in the baking process”.
Living in Darwin and reeling with shock, the Busbys were ready to give up their Royal Airforce careers to devote all their energies to Kirsten. Through an early intervention program they met a woman who offered support and hope; moving to Canberra years later they reconnected with her, and Kirsten thrived.
Kirsten has a tiny amount of sight in her left eye, “not much at all, but I do have light perception”. As a child she was given large print to read but after a year or two at school the print was getting smaller. “I was giving myself permanent eye strain … I’d come home every afternoon with really sore eyes. I got a really good vision teacher who said, ‘This is too much for her, she needs to focus on Braille.’”
She’d joined the school choir from day dot and has never shied away from performing. At a party for Royal Institute for Deaf and Blind children when the Busbys were living in Newcastle someone handed her a microphone. Aged six, she gave a rousing rendition of Rockin’ Robin. A seed was planted.
There’s also been swimming – performed to national level – rowing and goalball, where competitors are either vision impaired or blindfolded and defend long, narrow goals on a volleyball-sized court by throwing themselves in the path of the ball. Again her competitiveness had a downside; Kirsten regularly finished games with bruises down both sides.
Her Nanna played classical piano but Sue’s musical forays weren’t to Kirsten’s liking; aged five, she demanded that her mother stop singing along to The Wiggles. “Buzz” was in the school choir in his English childhood, but their daughter is literally singing from a different song sheet.
Her music teacher in Newcastle discovered at her first lesson that she has perfect pitch. Kirsten says she’s always known the difference between sounds, and simply needed someone to label them for her.
“You can play a note on the piano and Kirsten will tell you what it is – up to 10 notes in a row,” Sue says. Kirsten shrugs. “It’s innate.”
This can be both blessing and curse. “I’m kinda glad they don’t hire me for X-Factor or The Voice, I would be the most brutal judge. I wouldn’t go on looks, I’d go on how well they can sing. The people who win it, nine times out of 10 their pitch is shocking – but apparently they look good!”
The theatre world had always interested her, so she auditioned for the role of Cosette in Gungahlin College’s recent production of Les Miserables. She’d taken only the occasional semester of drama at school, but theatre’s scarcity of blind performers made her all the more determined. The realm her character operates in helped. “Most of the time Cosette’s with someone, there’s very few scenes where she’s navigating on her own.”
Not surprisingly Les Mis was a huge success. And for Kirsten “a whole lot of fun”, not least the chaotic buzz of the dressing room with nervous performers darting this way and that. “I was the only one with a decent make-up remover, everyone wanted to borrow it.”
The in-utero issues that took her sight have left her with an ongoing pituitary gland condition. A raft of daily medication addresses, among other things, an inability to produce growth hormone, a deficiency that robs a person of energy. With Violet by her side, Kirsten’s reliance on a cane – and the mental drain that comes with using it – has lessened.
“When she’s using the cane she has to concentrate on her surroundings a lot,” Sue says. “To drop just that little bit has made her less tired of an afternoon, given her that bit of independence. She comes home of an afternoon and doesn’t want to just collapse on the bed.” Kirsten adds that after a recent full day she came home and constructed a Christmas tree.
This is a life fuller than many could contemplate. While she admits to frustration at being in that teenage purgatory of wanting to turn 18 and finally be treated like an adult, rather than be 17 yet expected to behave like one, she’s happy to wait for some of life’s grown-up adventures. “You look at girls who are broken-hearted because they’ve just been dumped by their boyfriend and think, ‘I am proudly single!’”
Sue reminds her she has a more than adequate substitute. “You’ve got a dog now, that’ll do.” Leaving home is a leap she can picture making. Sue’s only concern is her medication, how quickly she can fall ill when her sugar levels drop. The NDIS will be crucial – having brought Violet into her world, it can provide tools to help with independent living such as an emergency button. An embosser has been a godsend, allowing Kirsten to convert music sheets to Braille simply and quickly.
Her get-it-done attitude knows no bounds. Frustrated at relying on others for her daily medication, Kirsten recently initiated a change.org petition railing against the absence of Braille labels on Australian packaging (in England they are mandatory).
“In my situation it’s a life or death thing – how am I going to read my medication if it hasn’t got a Braille label?” The petition is nearing 20,000 signatures.
Of next year she hopes only to get through VCE with better than a C-grade average. She’ll audition for the Conservatory of Music in Newcastle, Sydney and Adelaide, and with Sue and Buzz facing a move with their RAF communications jobs at the end of 2017, fingers are crossed she gets into Newcastle and they can return to a familiar environment.
Kirsten doesn’t know what’s ahead, although in every way she’s taking confident strides. “There’s no judgment other than your voice,” she says of what enchants her about music, which she’s certain will remain at the heart of her world. “For me, it’s just a sense of freedom.”
This Christmas will be very different for the Hughes household, with five-year-old Caitie able to speak clearly for the first time, sing and — perhaps most importantly — tell her parents what she wants from Santa.
Parents Bronwyn and Brett said the change in Caitie’s speech and confidence had been nothing short of miraculous since joining the National Disability Insurance Scheme a year ago.
The family, of Middle Swan in Western Australia, enrolled Caitie in a language development centre and used NDIS funding for weekly speech therapy.
“Caitie had childhood apraxia of speech and this time last year we had to guess what she was saying because we simply couldn’t understand her,” Mrs Hughes said.
“The kindy kids didn’t understand her and — as a mother this is really hard to admit — but I didn’t understand her a lot of the time,” she said.
“Watching a recording of her kindy class singing carols last Christmas is really hard because she is just opening and closing her mouth.
“We didn’t even know what she wanted for Christmas last year, we had to guess.”
Mrs Hughes said the prospect of Caitie getting lost or separated in a shopping centre or playground played on her mind.
“She couldn’t communicate clearly so I was always thinking, ‘What would she say? How does she tell anyone who she is?’ If she cannot be understood by her own family she cannot tell anyone else she is lost,” Mrs Hughes said.
“Caitie’s progress is a miracle, it is everything. She can now speak well enough to make friends her own age — five year olds are not known for their patience. She can sing as well,” she said.
“The NDIS planning process was really easy and we are so grateful for the help and assistance.”
Mr Hughes said NDIS community information sessions were valuable and a good opportunity to share knowledge with other parents.
He can now talk to Caitie from his fly-in-fly-out job in Australia’s remote north-west.
“I previously couldn’t speak to her the whole time I was away because she simply was not that understandable,” Mr Hughes said.
“And it is not just her speech that has changed, it’s her confidence too,” he said.
“We knew the real Caitie but no one else did because she was so self-conscious about her speech. She would avoid answering a question or hide.
“Now she is walking up to parents at school and starting conversations. They are gobsmacked. Every single day someone remarks about Caitie’s astounding progress.”
Caitie’s sister Regan, 9, also benefited.
“It is easier to play with her and more fun because she can tell me what she wants her dolls to do and how she wants it to go,” Regan said.
Mrs Hughes said Caitie had met all of her goals, her speech was at an age-appropriate level and as a result she had exited the NDIS.
This Christmas will be much, much noisier.
“Caitie was always a happy kid but she is so bubbly, over-the-top happy now,” she said.
“It’s a much louder house and it is great.”