NDIS verdict: daunting but worth it

Rachel Browne 

In most ways, Jordanne Taylor is a typical year 9 student. The 15-year-old loves dancing, cooking and spending time with girls her own age, watching movies and just hanging out.

Until recently, these simple activities were not always easy to organise for Jordanne, who has a mild intellectual disability and is on the autism disorder spectrum.

So when the National Disability Insurance Scheme became available, Jordanne's mother Debra Taylor immediately realised the potential it could unlock for her daughter.

"We decided to apply for a couple of reasons, firstly financial," Debra says.

The family live in Kurrajong Hills, north west of Sydney. The area was part of an early rollout of the $22 billion scheme which officially launched in July.

Debra admits the process of signing up to the scheme was daunting, involving meetings with an NDIS planner, providing multiple medical reports, devising a plan, obtaining an approved payment package and then deciding how that would best be used.

"To be perfectly honest, I felt like I was going for a degree in social welfare," Debra says.


Jordanne Taylor with mum Debra at home in Kurrajong Hills, NSW. Photo: Wolter Peeters

​"The amount of paperwork was pretty overwhelming. I had to put everything in writing and then chase up supporting documentation from doctors, the school, counsellors and gather up all of that.

"I have a business background so this type of bureaucracy isn't totally alien to me but I do wonder  how people who don't have that sort of background would be able to do it without support. That said, once I got it organised and got the application in, the funding came really quickly, and that opened a whole new world for us."


Mel McFadden with her boys Dom (left) and Seb in their Canberra home.  Photo: Andrew Meares

Jordanne's support package, worth $30,000 a year, covers the cost of support workers and specialists as well as activities which help her engage with the wider community, make friends her own age and develop life skills.

The NDIS is aimed at giving people with disability greater choice and control on what kind of services they receive and who provides them, a radical shift from the previous rationed system.


Disability service provider My Supports was founded by two men with disability, Jim Cairns and Terry Mader. Photo: Supplied

Jordanne and her mother engaged the Nepean Area Disability Organisation (NADO), a community-based charity which serves their local area.

"It is important to her to have friendships and that's what her plan has allowed her to do," Debra says.

"With NADO, she's been to Disney on Ice, they go to movie nights, they went into Sydney to see Vivid. She's made loads of friends which is what she wanted and what I hoped for.

"I just want her to be able to be a teenage girl who has places to go and things to do and friends to see, all the things that we take for granted. If she is going to develop and be part of the community, that's the kind of interaction she needs."

The ability to hire a support worker to supervise Jordanne has also freed up Debra to spend time with her other children and "just be a mum" to Jordanne rather than her carer.

"Previously my days were all about doing what Jordanne is doing," she says. "Jordanne has the benefit of the funding but I think the whole family has benefited."

While Jordanne has only been in the scheme since April, Debra has already noticed an improvement in her daughter's confidence and independence.

"I'm not going to be around forever to do everything for her so she needs to be able to develop these life skills and express what she wants," Debra says. "The possibilities that have been opened up are endless."

One of the goals of the NDIS is to boost workforce participation and Jordanne is now thinking about what she'd like to do when she finishes high school, considering the possibility of becoming a childrens' dance teacher.

PLANNING YOUR PLAN

Community service organisation Uniting is one of the local area co-ordinators for the NDIS in NSW, providing a link between potential participants and the scheme and then helping eligible applicants devise their plan and choose supports.

Uniting NSW/ACT director Anita Le Lay says the transition to the scheme can be both terrifying and life-changing for participants and their families.

"There is a lot of anxiety upfront, lots of fear and lots of worry," she says.

"Once they have got their plan and got their funding, they work out what they want to do and you see that uncertainty lift. 

"The power in that has been quite incredible, particularly where families have put up with average services in the past or no support at all. They can say, 'That's not good enough and I am going to try something new'."

Before signing up to the NDIS, Mel and Grant McFadden endured a revolving door of support workers for their two sons Seb, 9, and Dom, 8, who have complex medical and developmental needs.

"We had 55 different support workers in our home in five years," Mel says.

"We had no control over who it was coming into our home. Some were a fantastic fit and some were absolutely not a great fit."

The McFaddens live in Canberra, one of the early trial sites for the scheme which they joined last year. They have used the boys' plans to sign up with a new provider, Hireup​, an online portal which allows people to employ support workers directly rather than through an agency.

"When we transitioned to the NDIS we could have continued using our existing agencies but I wanted to try some new services," Mel says.

"I was quite happy to get rid of one agency in particular because the service was inconsistent, it wasn't very well co-ordinated. I felt like we were paying for something we were locked into that didn't suit our needs.

"It's just so much better now. We choose who comes into our home, we choose when they work, we choose the level of training and qualifications they have, we choose what they do."

In the past 12 months Mel has employed a swimming teacher for Seb, who was anxious around water, as well as an occupational therapist who is teaching circus skills to Dom.

"We call it fun occupational therapy," she says. "It meets all of his sensory needs as well as enabling him to socialise with kids his own age. We never could have done this without the NDIS."

NEW PLAYERS

Hireup, founded by sibling disability advocates Jordan and Laura O'Reilly​ last year, is one of a number of new providers entering the market in response to the NDIS.

Jordan O'Reilly says his personal experience with the services assigned to his late brother Shane, who had cerebral palsy, inspired him to start the company which operates nationally.

"Growing up with a brother with a disability made us all aware of some of the challenges around getting the right support," he says.

"We had many wonderful experiences with services but a lot of experiences where the system let us down. We thought the NDIS was a great opportunity to create some innovative solutions to some of the problems we experienced by connecting individuals directly with workers who suit them and their needs."

Another new player is My Supports, founded by two friends Terry Mader​ and Jim Cairns, who have paraplegia.

My Supports, which was established in Western Australia in 2014 but launched in NSW and Victoria in August, provides a range of disability services within local communities. The company also makes a point of employing people with disability.

"The NDIS will create thousands of new jobs, and we see no reason why a good portion can't be for people with a disability passing on their skills and experiences," says Mader, who has a background in investment banking.

"The NDIS really opens up things up – if the NDIS was not around we would never have been able to start."

BIG BUSINESS

The NDIS will be fully rolled out across Australia over the next three years, eventually supporting 460,000 people, many of whom have not previously received funded services.

The National Insurance Disability Agency, which administers the scheme, is predicting a huge increase in demand for services as the NDIS expands.

According to the NDIA's market position statement, the scheme will create up to 30,000 jobs in the disability sector in NSW and up to 18,000 in Victoria over the next three years.

The disability services market in NSW will more than double from $3.4 billion to $6.8 billion a year and in Victoria it will grow from $2.6 billion to $5.1 billion. 

The number of people with disability receiving funded support in NSW will increase by 60,000 over the next three years and by 27,000 in Victoria.

"This is the biggest transformational change since Medicare," says Uniting's Le Lay. "It will change the lives of thousands of people."

How to access the NDIS

1. Check your eligibility.

2. Consider supports you will need and who will provide them. Focus on your child's needs rather than the funding, and make a draft plan.

3. Make a plan with your NDIS planner.

4. You will see and review your plan before it is approved. If you are not happy with it you are entitled to a review.

from http://www.canberratimes.com.au/money/ndis-verdict-daunting-but-worth-it..., http://www.smh.com.au/money/ndis-verdict-daunting-but-worth-it-20160923-... and other newspapers.