Spend NDIS money while you have it

Spend NDIS money while you have it
Posted on Thu 14 Dec 2017

Spend all the funds in your National Disability Insurance Scheme plan. That’s the advice from Newcastle mother Penny White who thought she was doing the right thing conserving money and now regrets it.

Penny has three children and her youngest has cerebral palsy. Since Isabella, now seven, was four she’s been seeing an occupational therapist and a physiotherapist at the Cerebral Palsy Alliance’s Stuart Centre at Croudace Bay. 

Penny wants to warn parents to be wary of NDIS service reviews – especially if you haven’t spent all the money allocated in the previous year.

In 2016 life conspired to derail Penny’s intention of ensuring Isabella received the therapy and supports she required to reach her goals. As a result, less than half the money allocated in the 2016 plan was spent.

“I wasn’t given any indication that Isabella wouldn’t be given the same amount of money in the next plan. At the time I thought I was doing the right thing but in hindsight I should have made sure all the money was spent.”

Learn from experience

So how did this happen and what can you learn from Penny’s hard-won lesson?

Penny’s NDIS experience started well. She received Isabella’s first plan in 2015 and felt comfortable with the process. In mid-2016 she met with an NDIA planner, discussed Isabella’s goals and the supports required and the plan was increased to $15,000.

Isabella has muscle weakness in her legs which affects her gait and ability to walk distances. She also has difficulty writing, isn’t able to dress herself and like many children she struggles with feeling ‘different’.

Penny is determined that Isabella access the supports she needs in order to give her the best opportunities possible to strengthen her muscles, improve her gait, boost her self-confidence and ensure her handwriting is of a standard that will allow her to succeed at school.

But Penny’s intentions hit a snag when Isabella had her first epileptic seizure in August 2016, not long after the $15,000 plan had commenced.

The epilepsy medication left Isabella feeling tired and when the dosage was increased after a second seizure in January, her fatigue increased.

Coupled with this, Isabella started kindergarten and a few months later Penny separated from her husband. The full-time working mother decided to cancel some of the physiotherapy sessions and put on hold a few of the other supports.

“Isabella was so tired and she was dealing with so much that I didn’t want to push her too hard. But I regret not finding out what the other options were so I could have made the most of using that money.”

Penny understands that the NDIA has to ensure that clients don’t waste funds on the wrong therapies and supports. She also realises that staff are under pressure so when a planner phoned her and requested that the 2017 NDIS service review be done via the telephone she agreed, albeit somewhat reluctantly.

“I was home alone with the three kids when the planner called. She gave no indication that the amount would be reduced or that anything would change. We reviewed the plan and I did my best to outline the supports Isabella requires.”

You can imagine Penny’s shock when the 2017 plan came back allocating just $2,600 – despite Isabella spending nearly $7,000 on supports in 2016.

“When I saw the new plan I felt like we were being screwed down.” Penny asked for a plan review in August and sought assistance from CPA staff. The review request paperwork was lodged and when nothing happened, Penny made a series of phone calls, escalating her situation to the office of her local member, Sharon Claydon.

“Go to your local MP. It worked. I went into the NDIA for another interview and we talked it through. The Cerebral Palsy Alliance staff supplied quotes on supports including a special chair Isabella needs so she can learn to dress herself and a special knife and fork to assist her to feed herself. I’m still waiting on the outcome.”

In short, the process has been so time consuming and stressful, Penny simply wishes she had spent the original $15,000 because even half of that amount would have been better than the $2,600 allocated for 2017.

“It’s all so complicated. With the three kids and work, I need someone to help me. I’m grateful that Cerebral Palsy Alliance has been there,” she says.

Update: Just before Christmas the NDIA allocated just over $11,000 for Isabella's new plan. "It was worthwhile protesting the original decision in order to get this increase," Penny says. "The new plan didn't allocate money for the special seat but it allowed me to buy special knives and forks so Isabella can feed herself. There is also funding for appointments with a physiotherapist, occupational therapist and psychologist. It was a drawn out and frustrating process but I feel better about the outcome."

If you need advice on how to avoid the situation Penny has outlined, contact your local CPA office.

Male carer, Anthony shares his insights as a male carer to mark National Carers Week. 


One in four people will experience mental health problems at some point in their lives, and maintaining emotional wellbeing is particularly important for people with disability.



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