Emily’s Story – A Cry for Independence

May 31 , 2022

Julie-Anne Dietz

Emily’s Story – A Cry for Independence

A recent attempt to make a number of purchases in our store by a ‘regular customer’ has left me pondering some important questions in relation to the NDIS and NDIA.

My questions are directed to the government bodies who are managing NDIS participants through NDIA managed packages. Another question wants to understand who is assisting them to live their best life? And another question about the NDIS’s ‘first world’ approach to disability support and those claims to put people with disability at the centre of decision making, through the principles of reasonable and necessary supports and individual choice and control. (Source: ndis.gov.au).

All of this has left me compelled to share Emily's story because it speaks so nicely to the want for independence for people living with disabilities and the extra support that I know is needed.

Here’s Our Interactions with Emily

Over the last 2 months, Emily (not her real name) has been a 'regular DEO customer' who goes online and buys the products that she believes will assist her and her family.

I don’t really know if Emily is an NDIS participant, but she does have an NDIS number. I don’t know if Emily has children, but I know that she seeks to buy products suitable for young children with Autism.

I don’t know if Emily lives alone but I know where she lives.

What I do know is that Emily shops regularly at night time, as she puts her orders through our store from about 7.30 pm to 9.30 pm, maybe after the kids have gone to bed. 

I know that Emily knows how to go online and that she knows how to purchase items, place them in a cart, go through to the payment portal and even generate a quote for the NDIS. I know this because so far Emily has placed 10 orders ranging from a couple of hundred dollars up to the thousands of dollars per order. 

Often, the items Emily orders are the same as on the previous orders.

I know Emily has an email address and a mobile phone. I know that Emily understands where to place these details on the order form.

I have tried to contact Emily through email and mobile and SMS. Last night, I finally got to speak to her.

Emily is lovely. She knows she is NDIA managed but she wants to be Self-Managed, so she doesn’t have to keep asking other people for the things she needs. Emily said, she knows how to buy things, but she sometimes gets a little bit confused. Emily said she doesn’t have anyone to help her. She says it is hard when ‘they’ are only 3 & 4 by which I think she means the ages of her children – but I’m not sure. Emily said she will stop ordering things and that a lady from the NDIA called ‘Cathy’ might be able to help in the future.

Emily said she doesn’t need any help from me because she is looking after herself. I love her need for independence and only wish I could do more to support people in Emily’s circumstances. It is clear that funding is only one element of any care package.

We now know that Emily believed that this order was being sent directly to the NDIS and was going to be paid for and completed. This isn't the case as Emily wasn't picking up her emails and didn't know to pass her quotes/ invoices onto the NDIA. No transaction took place and of course DEO simply cancelled the orders and took the time to explain the situation to Emily.

I speak to a variety of people everyday. Sometimes in relation to a question about a product. Sometimes to act as an ear to those needing assistance to access products and services, but more regularly I speak to people who have funding, but don’t know how they can best use it to support themselves, their child or those in their care ... to live their best life!

Mostly, I speak with carers or support workers who care or advocate for those who cannot do this for themselves.

Not very often, though, do I speak to directly with the person with the disability.

Why do you think this is?

Whilst we have the NDIS which is great ... do we now need to prioritise how to be go about becoming Advocates for better Disability Independence?

In short - Yes, we do! 

Self worth, respect and being heard are everyone's fundamental right.

What does Emily's future look like? Is she falling through the cracks? Does Emily have an authentic voice in her wellbeing? If the answer to any of these questions is 'no' I personally find this heartbreaking. If there is no inter family support or proper carer network, who is there to look after Emily? Dropping a set amount of money into someone’s package but not supporting them to use their funding leads to compromised confidence and ultimately "a hole in your bucket dear Liza!" (Story about that). 

During our recent Australian election campaign both major parties were using NDIS funding as a vote lever, claiming to fully support the scheme for those who depend on it. Let’s hope our government keeps its promise, and supports its most vulnerable people and looks for ways of promoting authentic voice for our people living with a disability.

My call is to everyone reading this blog …if you know someone who needs advocacy, step in, step up and help – ask good questions to find out how best to assist and at all times be respectful of the process of support and care towards the best levels of independence possible.

Julie-Anne 

DEO Owen & Founder