Little Lachlan (front) has an extremely rare genetic disorder that means he autism, cerebral palsy and epilepsy. He is one of thousands of Ipswich residents who will transition to the NDIS over the coming year. Pictured with his dad Robert Buhse, brother Quinlan, 4, and mum Zoe Cahill.
Little Lachlan (front) has an extremely rare genetic disorder that means he autism, cerebral palsy and epilepsy. He is one of thousands of Ipswich residents who will transition to the NDIS over the coming year. Pictured with his dad Robert Buhse, brother Quinlan, 4, and mum Zoe Cahill. David Nielsen

Why the NDIS should matter to all Ipswich locals

YOUNG Lachlan Buhse's life depends on the successful rollout of the National Disability Insurance Scheme across Ipswich.

One of more than 11,000 Ipswich residents with disabilities, the six-year-old is one of two Queenslanders with an extremely rare gene mutation that causes epilepsy, cerebral palsy and autism.

"He has seizures and he cannot walk or talk,” Lachlan's mum Zoe Cahill said.

"Health wise he is pretty good but he gets ear infections easily and those trigger his seizures.

"In his first three months of life he had more than 800 seizures but now he'll have seven in a day, about every five weeks.”

Experts fear thousands of rural and remote residents with disabilities will miss out on the NDIS.

There are concerns many people will not sign up because they do not consider themselves disabled, they have not heard of the NDIS or they do not know how to access the scheme.

The NDIS is available to any Australian under the age of 65 who has a physical, intellectual, psychiatric or other disability.

This includes people who become incapacitated through workplace accident, car crash or other means after the Australia-wide rollout ends in mid-2019.

Lachlan communicates with his families using a device with switches but a short seizure can see him revert to being an infant again.

"We are starting to get him to communicate,” Ms Cahill said.

"Food is one of his main motivators so we have a switch that he presses to say 'more please'.

"We are trying to get his leg strength up as well.

"One 30-second seizure could see all of his abilities, like drinking from his bottle, disappear.”

Lachlan requires complex therapeutic and other supports and it's up to his parents to apply for the funding that pays for these needs.

That's where the NDIS comes in.

Ipswich residents began signing up to the $22 billion scheme in June and the rollout across our region is expected to finish by July, 2018.

When it is fully operational, the NDIS will provide funding packages for 460,000 Australians with intellectual, cognitive, neurological, sensory, physical and/or psychological impairments.

Remote, indigenous and multicultural Australians are the main group of people who could miss out on the scheme's support, UNSW Social Policy Research Centre Professor Karen Fisher said.

"Research shows people from indigenous or other cultural and language-diverse backgrounds are less likely to use a disability label or use disability services,” Prof Fisher said.

She said the NDIS's reliance on would-be clients being able to make in-depth plans could backfire for people with complex needs.

"People who need support paid for by the NDIS, first need support to work out how to use and navigate the scheme,” she said.

"People with multiple and complex support needs are an example of this exclusion.

"They may have a variety of needs from a life that could include mental illness, drug and alcohol use, poverty, poor education, criminal justice contact and cultural and language barriers.

"Or they may have particular circumstances, such as living in a remote community, that do not reconcile with the market-based structure of the NDIS.”

Disability advocates report some consumers are struggling to complete the NDIS application process while others have ended up with packages that provide less support than the old system.
Disability advocates report some consumers are struggling to complete the NDIS application process while others have ended up with packages that provide less support than the old system. Thinkstock/ Den Kuvaiev

Ms Cahill is completing the complex application process to ensure the NDIS meets all of Lachlan's needs.

The process requires each applicant to document every form of support they currently receive, the equipment they use and even the things family members do for the person with a disability.

"It was easier and a lot less scary than I thought it would be,” Ms Cahill said of preparing Lachlan's NDIS plan.

"Our planner included a lot of things we didn't think we could get for him - things like a shower chair or a hoist to lift him up.

"We didn't think we could get those things.”

Choices and challenges

Choice, Passion, Life Disability Support Services provides a range of therapeutic and other support options for Lachlan and other residents.

It is also a registered NDIS provider, supporting thousands of clients across regional Queensland and Northern NSW.

CPL chief executive officer Rhys Kennedy said: "One of the big changes is that for the first time ever, people with disabilities are being given the opportunity to choose where they'll get their services from.

"That means they can become more informed consumers and they can choose services that will help them achieve their goals,” Mr Kennedy said.

While there are positives under the new system, the rollout is not without major hiccups.

"One of the biggest challenges is supporting people to navigate the system,” Mr Kennedy said.

Disability advocates report some consumers are struggling to complete the application process while others have ended up with packages that provide less support than the old system.

There are also fears disability advocate numbers will be slashed as federal and state governments transition to the new funding model.

Queensland Advocacy Incorporated director Michelle O'Flynn said the flaws in the system could be overcome if the Federal Government slowed the rollout.

"There are massive issues and the NDIS lacks a concerted personalised approach,” Ms O'Flynn said.

"People are being squashed through a scheme that is not ready to take them and we have got planners who are not necessarily understanding of people with more complex needs.”

Ms O'Flynn said one of the main bugbears for many consumers was continually showing authorities they had a disability.

"They've done this over and over again and they don't feel that they should have to prove this for the rest of their life,” she said.

"The point of the NDIS was to provide an individual approach but instead it has been homogenous and does not recognise each person's unique needs.

"People who are living in boarding houses and hostels, exiting prisons or indefinitely detained in forensic and mental health facilities have not even been considered to date except by advocates.”

When it is fully operational, the NDIS will provide funding packages for 460,000 Australians with intellectual, cognitive, neurological, sensory, physical and/or psychological impairments.
When it is fully operational, the NDIS will provide funding packages for 460,000 Australians with intellectual, cognitive, neurological, sensory, physical and/or psychological impairments. Thinkstock/Jaren Wicklund

Despite the issues, official complaints about the scheme are low with just 429 people contacting the Commonwealth Ombudsman last financial year.

However, this was a 700% increase from the 62 complaints lodged in 2015-16.

An NDIS spokesperson said: "The National Disability Insurance Agency will continue working with people with disability, their families and carers to resolve any issues during this unique period of transition and remains committed to getting the balance right between participant intake, plan quality and the sustainability of the scheme.” - NewsRegional

DON'T MISS OUT

You may be eligible for the National Disability Insurance Scheme if:

  • You are under 65.
  • You are an Australia citizen, a permanent resident, or New Zealand citizen who is a Protected Special Category Visa holder.
  • You have a permanent or significant disability that requires help from others to do things or you need special equipment or assistive technology.
  • Your child is aged under 6 and has a developmental delay.
  • You or your child have a disability that is likely to be permanent or early supports would reduce how much help you or your child need to do things in the future.

Source: Australian Government



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