September 29, 2021

The perfect home: The journey and the destination

As a young adult, I had dreams like most people - to have a successful career, travel, and have my own home. Coming into adulthood, I began feeling cramped living with my family, and I needed my privacy and a space that felt like my own. Before I ever moved out, I’d used to tell my mum that I would find my own place and leave the nest, but she didn’t believe me in the slightest. Nevertheless, in 2011 I began looking for a place. I knew it would be difficult for me to find a house to rent, especially as a person who has a complex disability. Despite my endless searching, I didn’t find anything for four years. The available houses were group homes, and I knew I wasn’t interested in living with other people. I wanted to be challenged in life, and the challenges I set for myself didn’t involve a group home. Despite my longing to move out, I wasn’t prepared to sacrifice the things I knew I deserved.

In 2014, I experienced something profound which shifted my attitude towards life - my family friend Stuart was diagnosed with brain cancer. It was painful to watch Stuart navigate this as his health declined rapidly. Sadly, he passed away in October 2015, leaving behind a loving wife and two children, amongst others that love and miss him dearly. The tragedy of Stuart’s passing formed another motivator to chase the dream of living independently. This experience made me realise that I wanted to put my and my family’s minds at ease. I wanted them to know that I would have the structure and experience to continue living my life without them if something were to happen to them. Until I had moved out, my mum was my primary caregiver, and I wanted to reassure her that I could survive without her.


From that point on, I stepped up my game and went harder in my search. During that period, my boss approached me out of the blue, asking if I was interested in moving out of home. I told him that I had been actively searching for a while. He began telling me about six specialist units that were under construction in Frankston. That same day, after work, I drove by the site to check it out and discovered that the units would have some home automation features. It seemed like the right fit for me. Immediately, I began harassing the Department of Human Services with weekly emails pleading with them to select me for a unit.

A NEW BEGINNING

In November 2015, I received a surprise email from the Department of Human Services claiming that my application was accepted. I was on cloud nine. My journey of independent living was about to begin. On April 10th 2016, I finally moved into my very own space. There was a range of emotions. It was an overwhelmingly exciting yet scary experience. I went from receiving round the clock care at home from mum to having no idea who would support me day-to-day in this new living arrangement. The complex was equipped with 24/7 support. Although there weren’t allocated times for support, I could text staff when I required assistance, and they’d be there. Occasionally, I’d have to wait a few minutes if a staff member was preoccupied, but support was always around.

Image description: Jono in his Frankston apartment living room, in front of a TV and cabinet.

This place was a significant first step in moving away from my family. I lived in or around Frankston my whole life, and my family was within a fifteen-minute drive if there ever was a problem. Additionally, I had a great support network in Frankston, including professionals, friends, and support workers who would drop everything for me if required. However, after three years, I was ready for my next adventure. In February 2019, I realised that I wasn’t satisfied with my living situation. Some features needed improvement, but primarily, I wanted total control of who supported me in the house. I hired my own workers for community access, but there was no option to choose who supported me with personal care.

THINKING BIGGER

Once I had a clear vision of what I wanted, it was about finding the right people to help make it happen. In March 2019, I went to Summer Foundation as my first point of contact. They are a disability advocacy organisation, which I found to be genuine in their care and advocacy for people with disability. I spoke to them about my current living arrangement and what I was looking for moving forward. After listening to me, they informed me that their sister company, Summer Housing, was purchasing ten apartments in the new Melbourne Quarter building. They were customising them into Specialist Disability Accommodation (SDA*) that would be ready by mid-2020. Upon hearing the news, I swiftly jumped on the MQ website to find out more. Within the first minutes, I was sold. The spaces were going to be perfect for me. The application process began immediately after. I was keen to put my name in the hat, and my hopes were high.

After submitting my application, I was told that I could expect to receive an outcome by October. Finally, October came and went but still no verdict. I received regular emails from The Housing Hub regarding my application, but I was still in the dark about whether I had secured a place. Each day that I hadn't received an answer, I was wavering from disappointment to hopefulness. In December 2019, while I was out Christmas shopping, I received a call from Summer Housing offering me an apartment if I got the proper SDA funding in my NDIS plan. The joy washed over me! After hanging up the phone, I looked up at my support worker to find him crying. I asked him what was wrong, and he replied, "you're leaving me!". It was a roller-coaster of emotions.

To rewind a bit, I applied for SDA in September 2019. I knew SDA eligibility was critical in my next move, hence starting the process before I was even offered a house (I was excited!). I figured it would only take about six weeks to determine my eligibility. Once I'd submitted my application, I became relentless with the follow-up. I wanted to know what the outcome would be, and it seemed like they were taking forever. Why does it feel like time always slows when you're desperate for answers?

In May 2020, my SDA was approved, nine months after I applied. There was still one final piece of the puzzle left: I needed a new NDIS plan with increased funding for support, as I now required my own team to help with my daily living activities. A couple of months later, in July, I had my plan reviewed and was awaiting approval. A month went by, and I hadn't heard anything. It was like deja vu. I was growing increasingly frustrated, but there was little I could do. In early October 2020, I remember telling my support workers that I had a gut feeling that "my plan will be approved on 21st October". That day is especially significant to me, as it is the anniversary of my friend Stuart's death. Sure as hell, on the 21st October, I received the notification that my NDIS plan had been approved with all the funding I needed to make the move to the city.

Exactly three weeks later, I finally moved into my idyllic city apartment. Although it's not the first place I've been able to call home, it's the first place that truly feels like it, and that feeling is priceless. I love so many things about my new home, but I'm going to break down the four big ones – location, building, apartment & support.

LOCATION, LOCATION, LOCATION!

The phrase "it's all about location" rings true in this case. I couldn't have picked a better spot to live. This brand new apartment is in the heart of the Melbourne CBD on Flinders Street in the Docklands. It's only a two-minute walk to Southern Cross Train Station and multiple trams, so getting around is very accessible, which is a huge consideration for me when looking for a home. Convenience and accessibility is everything, especially for a person in a wheelchair. All the necessities are close by, and I can also readily enjoy my favourite hobbies, like attending sports games (football, ice hockey, basketball), playing poker and trying new food. The city is truly a hub for the best of these things. I don't typically attend gigs, concerts, or events, but I've developed a newfound eagerness to check some out once we get out of lockdown.

Image description: Jono in Melbourne City. The Melbourne Town Hall is lit up behind him and decorated with signs for Melbourne Comedy Festival.

THE BRAND NEW MELBOURNE QUARTER

My last place was in a complex that was purpose-built exclusively for people with disability. Here at Melbourne Quarter, 1500 residents live in standard apartments. Amongst these, there are ten purpose-built apartments for people with disability. The atmosphere feels different; it's like a community of people from all backgrounds. I no longer feel excluded or tied to a single way of living due to my disability.

The MQ East Tower entrance is on Melbourne's iconic Flinders Street. The elegant 46-story building boasts views of the city, Port Phillip Bay and the Yarra River. As you walk in, you are greeted by the friendly faces at the concierge. Before you get to the lifts, you pass a modern foyer with a comfortable waiting area. The building provides exclusive resort-style facilities over several levels. On one level, you can hire private dining rooms that come with a working kitchen, BBQ facilities and open-air seating designed for alfresco entertaining. The outer area includes walking paths and seating to enjoy the sun and the fresh air without leaving the building. I'm not done though, that very same floor has a library and theatre room you can book out to watch movies with friends. I know this sounds like a real estate listing, but I just love this place!

I think the next floor up is the best part of the building (besides my apartment). Firstly, there's a pool, which I use every week. If I'm feeling lazy, I get in the spa, where I look out to stunning views of the city. There is also a sauna, which I haven't tried yet, but I'm pretty sure I'll enjoy it. Go up one more set of stairs, and you'll find a gym and multi-use space for yoga and dancing classes. What more could I ask for? Conveniently, my apartment is also on this level.

MY LUXURY APARTMENT

Now, for my little slice of heaven. As you walk through the front door, you'll immediately see my cosy lounge/living space set up with couches, a table and an entertainment unit. Recently, I sat on my couch for the first time in five years to watch a movie. It was such a bizarre feeling! The room has large windows for natural light and views out into the city and train lines. To the right is my large kitchen with ample bench and storage space. I have room for a large fridge and even a separate deep freezer. There's a big oven and induction stovetop customised to my requirements, enabling me to be more involved in the cooking process. There's plenty of shelving around the kitchen to display both appliances and personal items. I also have a glass display cabinet showcasing all my trophies from different competitions over the years, along with a pair of Kobe Bryant's shoes, which he wore for training (yes, his actual shoes).

Adjoining the kitchen is a small study space that I've converted into a studio. I've got my film equipment in there, which I use to make content for my business. Walking back through the kitchen and living area, you'll head towards my bedroom. In my room, I have set up my desk and workspace. I spend a lot of time here for both professional and recreational purposes. To the right is my remote-controlled high/low bed with an adjustable bedside table. My bed faces a tallboy with a TV and PlayStation setup. Large windows cover one side, while the other walls are decorated with sports memorabilia from my favourite ice hockey team - the Melbourne Mustangs - and basketball legend Kobe Bryant. To the left are my built-in robe and the entrance to my bathroom. Attached to the ceiling in my bedroom is a hoist. The hoist moves me from my wheelchair and onto my bed or on the bathroom commode. The bathroom is modern and spacious, equipped with several handrails. There's a large shower with two shower heads and space to keep my commode. It also has plenty of storage space to store my personal care items, towels and linens.

Overall, it's exactly what I want and need. It's a significant change from my previous living situation because it no longer feels like I'm living in one giant room. Instead, it's sectioned off in a way that feels like an actual home. It's also wheelchair accessible without taking away from the apartment's aesthetic, making me feel like a regular city-living guy.

Image description: Jono in his living room. Afternoon light is coming through the window behind him which has views of the city.

THE BEST OF BOTH WORLDS

In this new place, I have a combination of supports. I have complete control over who supports me daily through my own team of support workers. Additionally, I have access to assistance at any time of the day through the on-site support in the building. If I need any unplanned or emergency support when I'm at home alone, I can call on them and they can be here within minutes.

After many applications, months of idling waiting, endless follow-up calls and emails and a whirlwind of emotions, I'm so happy to finally be where I am. They say it's about the journey, not the destination, but as I write this blog in my beautifully customised apartment, I'd say the destination trumps all.

*Specialist Disability Accommodation (SDA) enables developers to get payments from the National Disability Insurance Agency (NDIA), to build housing for NDIS participants who meet the eligibility criteria.

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