Down syndrome: What is it? Employment and opportunities | Video, photos, pictures

LIVING LIFE: They're living a life full of hopes of dreams
LIVING LIFE: They're living a life full of hopes of dreams

FRIENDLY, bright and bubbly - they sound like perfect qualities for an employee or friend, but unfortunately people with Down syndrome are still being discriminated against. Ahead of World Down Syndrome Day on March 21, Australian Community Media journalists sat down with people who have this syndrome, their parents and their employers.

Down syndrome is a genetic condition. It is not an illness or a disease.

Since 2007, around 270 babies are born with Down syndrome each year in Australia.

It is characterised by mental and developmental impairments, distinct facial appearance and maybe associated with thyroid or heart disease. They are generally shorter in statue and have shorter life expediencies.

But people with Down syndrome are much, much more than statistics and facts.

They have hopes, dreams, ambitions and are very much keen to be part of the community.

Joe Barnes, 19, is one of those people.

"My goals are get a house, get a girlfriend, get other stuff"

"Shoosh mum" are two words that make Dubbo's Maree Barnes smile with pride.

Son Joe has a voice and he's not afraid to use it.

The teenager, who has Down syndrome, is finding his feet after finishing mainstream schooling in 2018.

National Disability Insurance Scheme (NDIS) funding is paying for the development of skills he will need for "supported independent living" in the future including cooking and shopping for groceries.

One of Joe's long-term goals is to live independently.

Maree Barnes, Joe's mother

"One of Joe's long-term goals is to live independently," his mother said at the Barnes family home in a leafy Dubbo street.

Her 19-year-old son agrees but quickly adds "more than that". "My goals are get a house, get a girlfriend, get other stuff," he said.

The "other stuff" includes a job, with his busy weekly timetable reflecting the effort being made to support the aspirations of a much-loved son and brother.

FUN TIMES: Joe Barnes, 19, loves wakeboarding and his work experience roles. Photo: BELINDA SOOLE

FUN TIMES: Joe Barnes, 19, loves wakeboarding and his work experience roles. Photo: BELINDA SOOLE

Joe is studying a Certificate II in hospitality at TAFE NSW Dubbo and undertaking work experience at Hog's Breath Cafe and the Commercial Hotel.

Strength training and power lifting has Joe able and eager to unload the "Coke truck" at the cafe.

He also sets up the bar, having got Responsible Service of Alcohol accreditation in late 2018 under the guidance of a support worker.

Joe's current and short-term goal is to learn to pour a beer with the Commercial Hotel willing to help.

Maree Bares said her son Joe, who has Down syndrome, once called triple-0 after his sister put "too many" vegetables in a stir-fry for dinner.

The timetable covers work and play for the young man who is mad about sport.

He enjoys tenpin bowling, ping pong at PCYC Dubbo with friends, and indoor cricket as part of a team from the Westhaven Association, where he is honing his woodworking skills.

Joe competes in power-lifting competitions and is a proficient wakeboarder.

"I play golf with pop and pa," Joe said. "Pop's called Barry. He's really good at it."

There's no sugarcoating reality

But life is not all beer and skittles for the Barnes family, including Joe's father Anthony and sisters Tess and Eva, who form part of a "lovely, big and beautiful" extended family which embraces Joe.

While they are "better" people for having Joe, the Barnes family does not sugarcoat the reality of living with a person with disability.

"Joe requires a lot of attention," Mrs Barnes said. "It can be hard for everybody. It can be challenging."

She tells of him calling triple-0 after his sister put "too many" vegetables in a stir-fry for dinner.

BUSY: Dubbo's Joe Barnes and his mother Maree check out his busy timetable. Photo: KIM BARTLEY

BUSY: Dubbo's Joe Barnes and his mother Maree check out his busy timetable. Photo: KIM BARTLEY

"Joe puts us in the worst situations, crazy stuff happens but I think we are more able to deal with change because of it," Mrs Barnes said.

Joe's mother said people with disability could "do anything that anybody else wants to do". "It just takes a little longer, more practice and more support," she said.

The Barnes family are grateful to live in a community where "99 per cent" of people know, value and involve Joe.

"The main message is get to know the person behind the disability," Mrs Barnes said before asking Joe if he agreed.

"That's fine," he told his mother.

Opportunities to learn, grow and be employed

ON THE JOB: Glenray Industries employees Shane, Martin, Graham, Murray, Dot and Matthew with supported employee co-ordinator Trevor Sharpham. Photo:CHRIS SEABROOK 030619cglennray

ON THE JOB: Glenray Industries employees Shane, Martin, Graham, Murray, Dot and Matthew with supported employee co-ordinator Trevor Sharpham. Photo:CHRIS SEABROOK 030619cglennray

Employment opportunities are vital to everyone in the community, Down Syndrome Australia chief executive officer Dr Ellen Skladzien said.

While some "mainstream" employers offer jobs to people with Down syndrome, she said many were still segregated

"Often employers don't know where to start and they don't know what adjustments to make," Dr Skladzien said.

Glenray Industries, Wangarang Industries and The Westhaven Association are among the Central West employers who offer job opportunities to people with a disability.

Now with the NDIS [National Disability Insurance Scheme] they're setting their own goals about where they want to work and what they want to do.

Glenray Industries supported employee co-ordinator Trevor Sharpham

At Glenray, some of the people with Down syndrome work in the laundry and manufacturing departments.

"We've got five employees who've worked with us for 20 years," supported employee co-ordinator Trevor Sharpham said.

Year ago, the only employment opportunities offered to someone with Down syndrome was in a 'sheltered workshop'.

"You just sent there and you did basic work," he said.

ON THE JOB: The Westhaven Association employees Richie Smith, Libby Warrell, Peter Hilliam and Nellie Nicholls. Photo: SUPPLIED

ON THE JOB: The Westhaven Association employees Richie Smith, Libby Warrell, Peter Hilliam and Nellie Nicholls. Photo: SUPPLIED

But, Mr Sharpham said that term no longer represents the vast number of opportunities now on offer.

"Now with the NDIS [National Disability Insurance Scheme] they're setting their own goals about where they want to work and what they want to do," he said.

In Dubbo, The Westhaven Association has been employing people with disabilities since 1960 and offers people roles in commercial cleaning, secure document disposal, grounds maintenance and in the Two Sheep ugg boot quality assurance section.

ON THE JOB: The Westhaven Association employees Daniel Okoduwa and Joe Barnes. Photo: SUPPLIED

ON THE JOB: The Westhaven Association employees Daniel Okoduwa and Joe Barnes. Photo: SUPPLIED

Westhaven's employment services manager Kris Gersbach said they currently provide employment for 56 people living with disabilities, including five with Down syndrome.

"Some have worked here for a very long time, one for over 30 years," she said.

Ms Gersbach said people with Down syndrome have fantastic attention to detail and they excel in roles that involve very specific tasks.

"They may take longer than others to complete the job at hand, but it will be done correctly," she said.

"Our employees are always bright, bubbly, very friendly and affectionate – very personable characters."

"Just give them a chance"

If the profile of people with a disability was raised, then Wangarang Industries chief executive officer Kevin McGuire believes there will be more opportunities for everyone.

The Orange based employer not only offers people with a disability the chance to get a job, it also encourages businesses to do business with Wangarang.

ON THE JOB: Wangarang Industries employees Lottie Graham, Matthew Lawson, Jeremy Zelukovic, Anthony Wanlum, Damien Barrett and Tim Hannelly putting labels onto wine bottles. Photo: JUDE KEOGH

ON THE JOB: Wangarang Industries employees Lottie Graham, Matthew Lawson, Jeremy Zelukovic, Anthony Wanlum, Damien Barrett and Tim Hannelly putting labels onto wine bottles. Photo: JUDE KEOGH

Mr McGuire had a very simple message for anyone who has ever thought about hiring someone with Down syndrome.

"I would think that any employer who has the propensity to even consider employing someone with a disability to give them a go because you'll be surprised at what someone with a disability, especially Down syndrome, can bring," Mr McGuire said.

"The nature of someone with Down syndrome is happy-go-lucky and friendly so often they really suited to hospitality work

"Give them a chance, give them a work trial, give them a chance to see what they can do for you."

No-one left behind in our future

World Down Syndrome Day not only recognises and celebrates people with this syndrome, it also aims to highlight ability rather than a lack of it.

"Things have changed dramatically, even in terms of life expectancy and people with Down syndrome are being included in the community more," Down Syndrome Australia chief executive officer Dr Ellen Skladzien said.

The theme for this year's World Down Syndrome Day is 'no-one left behind' and she said that despite all the changes and improvements that some people were still discriminated against.

"One-third of people with Down syndrome feel they have been discriminated against," she said.

"One-third have not been able to participate in education or community activities like they'd like to."

What now?

Dr Skladzien people with Down syndrome want to work for the same reasons as everyone else – so that they can be independent, contribute to society, earn their own money, learn new skills, meet new people, and feel valued.

Down Syndrome Australia has developed resources to help people with Down syndrome and their families understand employment opportunities.

The resources also include information for employers and the general community.

Mother's son an example of one who cherishes every moment

While people who are not in same situation may think it's a challenge to raise a child with Down syndrome, Dubbo mother Yulia Yaroshevich said it's far from that.

Ms Yaroshevich has three children, a 12-year-old, a 10-year-old and an eight-year-old.

Her youngest is the delightful Jimmy, who has Down syndrome.

She said there's plenty of positives from raising a child with the disorder.

"There's so many positives. It could take a long time to list them," she said.

"The most significant positive would be the warm feelings of value that these people bring to the world.

"They are a beautiful example of people who cherish every moment."

Jimmy attends St John's Catholic Primary School and Dubbo and him, his mother and many other people across Australia will celebrate World Down Syndrome Day on Thursday, March 21.

"It's a day we celebrate at school and everyone is so supportive and positive of the day," Ms Yaroshevich said.

"I'd like to thank everyone who has helped us.

"Down Syndrome is a condition that affects people all across the world and it's important that people understand and recognise the importance of the day."

World Down Syndrome Day is a day when people with Down syndrome and those who live and work with them throughout the world organise and participate in events to raise public awareness.

The first world day was held in 2005 and the date of March 21 was selected because the genetic disorder is caused by the presence of all or part of a third copy of chromosome 21.