Sudden policy change leaves Aussie family facing unforeseen struggles
- Replies 1
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.
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.
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.'
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.
'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.
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.
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.
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.'
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.
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.
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