Navigating the complexities of the National Disability Insurance Scheme (NDIS) can be daunting for any Australian family.

Still, for the Harris-Ekblad family, it turned into a nightmare. The family, who the NDIS initially offered a lifeline, found themselves trapped in a bureaucratic backflip that left them with a huge loan and no safe living environment for their young daughter.

Aerin Ekblad, a six-year-old with Rubinstein Syndrome and congenital glaucoma, faces daily challenges due to her condition.

Her parents, Melissa Harris and Hans Ekblad have been fighting tirelessly to provide a safe and accessible home for their daughter, who is legally blind and has severely reduced mobility.

The family's home, perched atop a steep incline with 84 steps, was deemed too dangerous for Aerin, prompting the NDIS to propose a solution.

A Sydney family struggles financially after withdrawing NDIS funding for their daughter with Rubinstein Syndrome's relocation. Credit: Facebook

In March 2024, the NDIS ruled the house unsafe and offered to cover the family's relocation costs to a more suitable property.

This decision was a beacon of hope for the Harris-Ekblad family, who had been struggling with the prospect of safely transporting Aerin up and down the precarious steps.

With two rulings from the NDIS complex home modification team supporting the move, the family began preparations to sell their home and relocate.

However, in a shocking turn of events, the NDIS retracted its offer in January, citing new legislation aimed at 'improving the experience' of NDIS participants.

'It's been absolutely diabolical for our family. We have gone through almost nervous breakdowns from this, it's been dreadful,' Ms Harris said.

'We have two rulings in our favour from (the NDIS) complex home modification team stating that the house is too dangerous for Aerin and she needs to be moved from there,'

'That is their findings so the fact that they have now overruled it is outrageous and irresponsible.'

This left the family in a dire situation, with a $150,000 loan taken out for home renovations in anticipation of the sale and no means to cover the relocation costs.

The family's plight highlights a critical issue within the NDIS system: the unpredictability and inconsistency of support.

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Just seven months later, in October 2024, the Albanese Government introduced new legislation aimed at 'improving the experience' of NDIS participants.

A key update clarified the definition of NDIS supports, specifying what funding could and could not cover.

Bill Shorten, the NDIS minister at the time, welcomed the changes, calling them a milestone for Australia and people with disabilities relying on life-changing support.

However, for Aerin and her family, the changes had devastating consequences, rendering her previously approved funding invalid.

'From October all the way to January this year, I was assured that everything was fine by the NDIS and their agents Northcott,' Ms Harris said.

'Then, on the 23rd of January, the planner said they can only approve part of the costs, and then on February the 6th, we were told we were getting nothing.'

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Now, Mr Ekbald and his partner are at their wits' end, unable to repay their $150,000 bank loan or afford the relocation independently.

The Harris-Ekblad family's story is a cautionary tale for all Australians relying on the NDIS for assistance.

It underscores the importance of transparency and stability in the decision-making process of such a vital support system.

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The NDIS's suggestion to revisit the original solution of an inclinator lift, which would cost taxpayers nearly $1 million and still require the family to relocate during construction, seems to defy logic and financial prudence.

'That will cost taxpayers almost $ 1 million, and it still involves us moving while it's being constructed. It makes no sense,' Ms Harris said.

Many of you, as members of the Seniors Discount Club, may have family or friends who rely on the NDIS for support.

It's essential to stay informed and vigilant about the potential for policy shifts that could affect your loved ones' access to necessary services.

The Harris-Ekblad family's ordeal is a stark reminder that the safety and well-being of our most vulnerable citizens can hinge on the whims of bureaucratic decision-making.

Key Takeaways

• A Sydney family is struggling financially after the NDIS retracted its offer to fund the relocation of their daughter with a disability, leaving them with a substantial loan and an inaccessible home.
• The NDIS initially offered to cover the relocation costs for the Ekblad family but reversed its decision following new legislation, despite acknowledging that their current home is unsafe for six-year-old Aerin, who has Rubinstein Syndrome and is legally blind.
• The family is now faced with a bank loan of $150,000, taken out for home renovations in preparation for a sale advised by the NDIS, which they cannot repay due to the backflip on the agreement.
• Despite the NDIS confirming the necessity for Aerin to move, they are now revisiting the initial solution of installing an inclinator lift at the family's home, which will be highly expensive and take years to complete, requiring the family to relocate temporarily.

Have you or someone you know faced similar challenges with the NDIS? How do you think the system can be improved to prevent such distressing situations from occurring? Let us know in the comments below.

 

[deni67]

The NDIS needs to step up and give this family what they were promised in the first place, where is empathy these days when our most vulnerable can't be helped. To promise something then take it away is surely illegal?

 

[gamiry]

The NDIS needs to step up and give this family what they were promised in the first place, where is empathy these days when our most vulnerable can't be helped. To promise something then take it away is surely illegal?

there are Go Fund Me requests for the most mundane things that are often stupid like "I want a holiday". Surely we can do something to help these people. NDIS are just a bunch of arseholes who think nothing of ripping off everyone. I don't trust GFM because I tried to give $1000 to them for someone in need and GFM tried to add another $110 which, for a start I didn't have left. Any suggestions please?

 

[Toni Wrinkles]

it was approved before the amendment so it should stand, Bill Shorten should be sacked for all he has put NDIS people through ...........another Labor failure, heaven help them and us if they get in again with the Greens and Teals sorry I am not a big political person believing all have bad faults we all do but for heavens sake what has Happened to Australia not since the depression have we treated people this badly until now God Help them and God Help Us All

 

[gamiry]

it was approved before the amendment so it should stand, Bill Shorten should be sacked for all he has put NDIS people through ...........another Labor failure, heaven help them and us if they get in again with the Greens and Teals sorry I am not a big political person believing all have bad faults we all do but for heavens sake what has Happened to Australia not since the depression have we treated people this badly until now God Help them and God Help Us All

why do people keep blaming the Government? Look at the bitch who was in charge of NDIS and almost cleaned out the bank account and appears to have got away with it. With Palmer starting up his Trump Party and stuff the Greens want, you should be thankful for what we've got and I'm not a political person

 

[Fay1946]

Maybe they should go on Today Tonight with their very sad plight. Often these shows can help them. So sorry for them, they must be feeling so let down with it all.

 

[Macarj]

NDIS are useless my younger brother has needed help for 8 years and his lawyer and several doctors have been trying to get him help from NDIS he is wheelchair bound after loosing connection from his brain to his legs that has also made his weight go up he needs help with everything

 

[darrellh]

Yes I agree with getting TV involved. That usually has a great outcome. But they have no right to promise with one hand and then take away. They have alot of explaining to do and the stress they cause families is beyond ridiculous. It is just not on and someone needs to be held to account. This needs to be sorted and sorted quickly.

 

[Leslieanne]

Aabsolutely disgraceful.

 

[Catherines]

I once threatened a company with TV exposure. They had signed my mum up for broadband, Fay1946. Mum had no clue what they were talking about, she didn’t have a computer, mobile phone or tablet. I called them up and asked if they wanted to find themselves and their company on TV the next day. Nothing nothing further came of it & it was cancelled that day.

I agree with this rubbish - get it on national TV. There is not a lot we as citizens can do but exposing this nonsense on TV might hold those concerned to account, but it must be done by those who are wronged.

My brother has a child with Angelman Syndrome (look it up on the internet - a condition with multiple different disabilities) and you won’t believe the hoops he has to jump through with NDIS both forwards and backwards. His son has scoliosis so severe that his spine is literally at a 45 degree angle, has never uttered a word in his 26 years, can barely walk due to scoliosis, has frequent seizures, 2024 in hospital for close on 6 months to adjust seizure medications etc; when the young man turned 18 his bank wanted HIM to sign his own bank account. I told my brother to take him to the bank so THEY could make him sign. That rubbish soon stopped. An NDIS provider also charged the system $8000 for a shower chair, yes you read that right, $8000. Some of the rorting of NDIS also needs to be investigated and called out on national TV - AND STOPPED.

 

[Shellface]

Make NDIS simple

 

[gamiry]

Yes I agree with getting TV involved. That usually has a great outcome. But they have no right to promise with one hand and then take away. They have alot of explaining to do and the stress they cause families is beyond ridiculous. It is just not on and someone needs to be held to account. This needs to be sorted and sorted quickly.

I don't know what it takes to get an item on air. I've sent a few to ACA and have been contacted once. Nothing has ever hit the airwaves.

 

[Catherines]

Maybe they should go on Today Tonight with their very sad plight. Often these shows can help them. So sorry for them, they must be feeling so let down with it all.

And let down by a system meant to help them.

 

[Veggiepatch]

Maybe they should go on Today Tonight with their very sad plight. Often these shows can help them. So sorry for them, they must be feeling so let down with it all.

That would work well.

Today Tonight disappeared completely off Australian airwaves in November 2019.

 

[Ittybitty]

I would like to know what NDIS were supposed to give you money for or what were you expecting them to pay for? Why did you take out a $150,000 loan when you were moving? The bank approved it so you mustn't be too down & out. I feel for people who have children with disabilities but I do not think that it is the tax payers (which is 20% of the workers in Australia) responsibility to pay for your relocation or new residence if that is the case. You didn't have to move, it was your choice. Many people are given recommendations but that does not mean you have to abide by them. There are too many people ripping this system off. It needs to be shut down & everyone be reassessed.

 

[Colette 3799]

The NDIS needs a complete overhaul. There are too many loopholes for people who don’t need support to rort the system and too many people who desperately need support going without. It sounded like a wonderful thing when it was first put into place - maybe on paper. My experience, through work, was many of the people working for the NDIS really didn’t have much if any experience with disabilities. And were poorly trained. Many missed vital needs and others passed things that were of no benefit to the person supported. And dont get me started on the rorts that happen at the mention of the NDIS and disability - the price of everything shoots through the roof.

 

[Clancieblue]

I would like to know what NDIS were supposed to give you money for or what were you expecting them to pay for? Why did you take out a $150,000 loan when you were moving? The bank approved it so you mustn't be too down & out. I feel for people who have children with disabilities but I do not think that it is the tax payers (which is 20% of the workers in Australia) responsibility to pay for your relocation or new residence if that is the case. You didn't have to move, it was your choice. Many people are given recommendations but that does not mean you have to abide by them. There are too many people ripping this system off. It needs to be shut down & everyone be reassessed.

I'd like to understand why they needed to renovate if they were selling as well. It wouldn't cost $150,000 to relocate, possibly could have afforded if they moved to a cheaper home/suburb for the benefit of the child.

 

[Ronloby]

NDIS is a rort on the system, full stop. A government enquiry into NDIS should be No 1 for the NEW government. However, it would take years before any results were known.
Maybe the family should have re-located first then taken on NDIS.

 

[Suzanne rose]

If NDIS promised them then they should do what they said they would do.

My big question is why did they borrow $150,000 to renovate before they sold. This sounds a big Reno

I also wonder why they didn't sell and relocate earlier ?

 

[bombadier]

it was approved before the amendment so it should stand, Bill Shorten should be sacked for all he has put NDIS people through ...........another Labor failure, heaven help them and us if they get in again with the Greens and Teals sorry I am not a big political person believing all have bad faults we all do but for heavens sake what has Happened to Australia not since the depression have we treated people this badly until now God Help them and God Help Us All

He's gone! And left the mess behind, he's picking up $860,000 as vice chancellor of, I think, a Canberra university. . Feel so bad for this family, this scheme seems to have been a rort from day one, so many stories of bad compliance and practices. I don't think gods listening.