Aussie family ‘trapped’ with a huge loan and ‘nowhere safe’ for their young daughter to live after breathtaking NDIS backflip

A Sydney family is being forced to pay back tens of thousands of dollars after the NDIS suddenly backflipped on its offer to fund a life-changing solution for their disabled daughter. 

Aerin Ekblad, 6, was born with a rare genetic disorder called Rubinstein Syndrome which affects organs and is characterised by short stature, and moderate to severe learning difficulties.

Aerin also has congenital glaucoma. She is legally blind and has severely reduced mobility. 

Her parents, Melissa Harris and Hans Ekbald, said their daughter now weighs 22kg and they can no longer safely carry her up the 84 steps to their home which is situated on top of a steep incline.

In March 2024, the NDIS offered the couple a ‘lifeline’ after it ruled the house in Narrabeen, in Sydney’s Northern Beaches, was too ‘dangerous’ for Aerin to live in.

The NDIS said it would pay the family’s relocation costs if they sold their home and moved to a more suitable property. 

Ms Harris and Mr Ekbald thought their problems were solved, but in a shocking U-turn in January, the NDIS pulled back its offer, leaving the family with mounting debts and nowhere else to go. 

‘It’s been absolutely diabolical for our family. We have gone through almost nervous breakdowns from this, it’s been dreadful,’ Ms Harris, 54, told Daily Mail Australia.

‘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.

‘If Aerin falls she has no way of protecting herself, she has no control of her body and will go down like a sack of potatoes on the stone steps.’ 

Mr Ekbald, 52, added: ‘Her condition makes her feel like she has an itch at the back of her brain so she can sometimes throw herself around almost trying to scratch it and now she’ s getting bigger it’s just not safe on the stairs for her or anyone carrying her.’

Aerin’s problems accessing the home were initially assessed by the NDIS in 2021 with an approval being granted for an engineered inclinator lift so she didn’t have to be carried up or down the stairs. 

But after costs started increasing from $500,000 to almost $1million for the custom-made apparatus, the NDIS asked the family if they would instead consider selling their home and buying a more suitable property.

‘She is basically trapped and stuck at home while her twin sister has started school this year without her so we were grateful of a solution,’ Mr Ekbald said.

‘We didn’t want to move but the tricky installation (of the engineered lift) meant we would need to relocate for two years and it was just impractical.’

The family agreed to the new NDIS plan and were given written approval in March 2024 for ‘relocation and associated costs’ including their stamp duty and legal fees.

‘We got the house valued and the real estate agent advised us to do some work before we listed it for sale,’ Mr Ekbald said.

‘It’s basically a very old fibro shack and we were selling on the hill to move to the flats so we really needed to do everything we could to maximise the sale price.’

The couple then took out a loan for $150,000 and started the recommended work which included a full exterior and interior renovation not including bathrooms.

But just seven months later in October 2024, the Albanese Government brought in a new legislation aimed at ‘improving the experience’ of NDIS participants.

A key change included the ‘new definition of NDIS supports, making it clear what NDIS funding can and cannot cover’. 

Bill Shorten, the NIDS minister at the time, welcomed the change. 

‘This is a milestone for Australia and all the people with disability who do and will receive life-changing supports from the NDIS,’ he said.

Unfortunately for Aerin and her family, the changes meant she was no longer eligible for her already approved funding.

‘From October all the way to January this year, I was assured that everything was fine by the NDIS and their agents Northcott,’ 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.’

Mr Ekbald said he and his partner are at their wits’ end, with no way of paying back the $150,000 bank loan or funding the relocation themselves.

The renovations boosted the property’s value to $1.8million. The couple said a suitable house in a flat area would cost about $2million. 

They said the cost of purchasing a more expensive property, coupled with the loan and relocation costs would leave them about $300,000 out of pocket. 

 ‘We are now getting zero help to move. I don’t have that money and I am now left carrying this burden with that bank loan at 54-years-old,’ Ms Harris said.

‘I can’t borrow anymore to move and the loan I got was a short-term reverse mortgage at 10 percent. I’m stuck.

‘Aerin is trapped in her home and can’t get to school or doctors’ appointments.

‘She is a twin. and she sees her sister go off every day and it’s not fair, she should have access to the community, an education and should have a life too.’

In a final blow, Ms Harris says the NDIS, who still agree the house is not safe, want to revisit the inclinator lift solution.

The installation of the custom-made lift also includes council approval, engineer construction, excavation and it and will take about two years to complete.

‘That’s going to cost taxpayers almost $1million and it still involves us moving while it’s being constructed. It makes no sense,’ she said.

An NDIS spokesperson said their priority remained with ensuring the family has the disability-related supports they need. 

‘When considering funded supports, the agency must make all decisions in accordance with the NDIS Act,’ the spokesperson said.