On Our Own Tracks

How I have achieved my childhood dream of living independently and how you can do the same!

The dream of living independently… what does it look like to you? As far back as I can remember, I have always dreamt about what it would look like if I did move out independently. I still remember the multiple discussions I had with my family and friends about how it would be if it actually happened. As I matured these discussions became more practical as we realised the extent of my needs and started planning ways to ensure they were met. One of the options included my family kindly offering to build extensions onto their properties so that I could have my own space. Another option included me sharing with some abled bodied mates and working out fair solutions such as offering to pay their part of the rent in exchange for them being my backup support.

Despite these seeming like very possible options, I realised that these might not be suitable for me as I wanted to live closer to Sydney and my friends were at the age where they were settling down. So I found myself often going back to the drawing board until one day my friend and mentor, Kristy, (featured in our blog about selfmanaging you NDIS plan) sent me information about a new form of disability housing called ‘Specialist Disability Accommodation’ (SDA), which was opening near Ryde. As I began to research SDA, I realised that the high level of this housing was absolutely perfect for me as it provided completely accessible housing with access to 24 hour care that I would be able to use when my own carers weren’t with me. This housing system was established by the Australian Government and mirrors similar successful models from overseas. After many discussions with my family and people around me, I began the process of applying for SDA Housing.

My first step was to contact the Summer Foundation, an organisation that matches clients to housing. It was here that I was introduced to Kelly, who I had a meeting with. I was accompanied by my Support Coordinator, Steph (from Marli and Moe) and one of my oldest friends and carers, Jess. At this meeting we took the opportunity to discuss all our questions and concerns, from the process of applying for the Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) sections of my NDIS, to how it would work when my regular carers weren’t with me and how I could contact and utilise the onsite services. With confidence in knowing that this would be the right setup for me, I proceeded to the next step, which was to actually apply for SDA.

Fortunately, around the time that I was looking into the SDA model near Ryde, there was a series of events happening around the city specifically about new housing options with the NDIS (National Disability Insurance Scheme). It was at this conference that I was introduced to Helen and Matthew from AccessAccom and I discovered that there were SDA apartments being built around Penrith, which was close to where I grew up. This seemed like the perfect place for me to move to, as it was right in the middle of where my family, friends and carers lived and would make the transition of moving out of home much easier for me. So, I was all set to apply.

With incredible support from Kelly, the team from AccessAccom, Interaction (the service organising the onsite care) and my support network, I began my first step. I had to apply for my tenancy, as well as securing the SDA Funding type on my individual support plan that suited my abilities the most. This SDA strand is named ‘Single Occupancy High Support Needs’ and requires an extensive application process. Once I completed the tenancy application we worked on completing my SDA application. This consisted of multiple reports (of about 50 pages each) from my support coordinator and Occupational Therapist, Steph, from Action Forward. I also needed statements from both of my parents stating the reasons why they could not keep caring for me at home and pages of reports explaining why I needed equipment such as a ceiling hoist and a specialised bed. During this process I was so grateful for my team and the effort they put into each report.

After what felt like an extremely long period of time – much longer than what we all expected – I finally got approved for the SDA funding strand. However, amongst all of the excitement, we soon realised that my funding category wasn’t what we were expecting, or what we had applied for. The category that I received was called ’’Fully Accessible Dual Occupancy”, which meant that I would be placed with another participant that would not be of my choosing and most importantly, the ‘Fully Accessible” ability is for participants who have significantly milder disabilities than me. It meant that I wouldn’t have been able to move into the type of apartment that suited my needs perfectly.

The positive thing about this experience is that as soon as it was discovered, my support team, family, friends and I set about finding creative ways to appeal this result. We eventually went with my Support Coordinator’s suggestion, which was to video myself talking with my iPad and show how physically disabled I was. I also added a little humour to it by wearing my T-shirt saying ‘Hands Are Overrated’ (you can look on our Redbubble Store).This video was sent in with another three reports that simplified all of what we stated in the original application. Then after another extensive wait,

including a few calls to the NDIA asking for updates on my appeal, I was finally approved for the ‘High Support Needs’ category.  Then everything was suddenly a go!

Just like any move, the last part of this process included a few stressful months for all of us as we sorted equipment, my care team, care roster, discussions with the interaction team about how we were to negotiate my access to the after hours care team and the usual organising of things such as furniture, rental agreements, wifi and electricity.

It’s been six months now since I moved into my little flat and it has been worth everything I have been through to get here. Although there have been a few teething issues I absolutely love every part of my little unit from the accessible equipment I have and the fact that I am right in the heart of Penrith, to the community of both friends and carers around me. I really feel that I am living the dream that I thought about so much as a child.

My House Tour