Don’t tell us how to live… Live on your terms

Nicole’s sister Kelly before her second spinal surgery

As I sat in the hospital with my younger sister, who had just been diagnosed with Cauda Equina Syndrome, a spinal cord injury causing paralysis, so many questions were running through my mind. I’d been working in disability for 15 years but I’d never been on this side of the fence before.

I had entered into disability services at 21, after a few years working in accounting and law. Ethically it didn’t sit well with me, so I started as a Support Worker when family and friends suggested I’d be good at it. I fell in love with Community Services straight away. It felt like home. It felt like it aligned with my highest values, and I knew I’d found my place in the world.

I was soon thrown into the office because of my admin skills, eventually working in rostering, support coordination/case management and eventually Care Manager. Unfortunately the company was going under, so rather than seeing clients go without care, I took over the company at the tender age of 26.

Due to my own complex history of trauma, mental ill-health and eventually alcohol misuse, I knew I wanted my company to focus on people with complex issues, people with disabilities who were also facing mental health or substance issues, which is where I have focused the past 10 years of owning my company, Wyngate Care. We are a small boutique family run company, working from the heart.

When my sister, who is the Care Manager at Wyngate Care, who also started in the industry at a young age, had severe sciatica, I was sympathetic, but not too worried. A few tests eventually showed a severe prolapsed disc. A very simple common injury. However, when she started going numb, I knew the issue was far greater.

In all my years in disability, I’d never come across something like this. I’d seen many people born with disability, or struck down in the prime of their life from car accidents, diving injuries, progressive neurological disorders, many different cases. But I’d never seen anyone go numb and progressively paralysed from a prolapsed disc!

I knew the prognosis wasn’t great, she was being wheeled into emergency surgery to have the disc that was crushing her spinal cord removed. She had already started losing feeling in her pelvic area, saddle region and legs. If she didn’t have surgery, she would be completely paralysed within hours. If she did have the surgery, the risk of complete paralysis was high.

While she was in surgery, my mind turned to the future. Obviously I could help provide direct care workers, but where would she live? Her house wasn’t even close to accessible. She had worked her butt off to buy her home, on her own, always the strong independent women, but now, that house could be useless!

Not wanting to get too far ahead of myself, I realised even rehab was going to be long and difficult, and depending where she went, either a couple of hours from home, or into an Aged facility in Geelong.

While everyone else was focused on the surgery, my mind was a million steps ahead, worried about things that were weeks or months away. So I thought I’d try and start my own spinal cord rehab service before she got out of surgery! I even spent the next day calling local council, services, people who I thought could get this up and running quickly, before she got home. Contacting other people in need to see if it could help them.

But luckily after surgery, the outcome was far more positive than anyone expected. The paralysis had been stopped in its tracks! My sister would eventually walk again, and be able to live independently in her own home, and attend fairly easily accessible rehab. Crisis averted!

But a seed had been planted in my brain that began to grow.

The next year was focused on my sisters recovery, and trying to run my business, which was getting busier every day. We started getting more and more clients, often young people with disabilities in nursing homes or unsuitable accommodation, rehabs, hospitals. Often resulting in them not being able to return home due to inaccessibility and not enough supports in place.

The seed grew…
One day I had a long time client who’s parents had passed away, with nowhere suitable to live. I met with the family, and a lightbulb went off in my head! Let’s just build a house! Another lightbulb, let’s make it big enough for 2-3 people, as this particular client didn’t want to live alone. Why not help a couple of people while we are at it.

I researched, came up with a plan, but it wasn’t going to work in this case. So I researched more, and more. I read thousands of hours of legislation. I realised the NDIS had introduced Specialist Disability Accommodation. I researched some more. I figured I could build one house, use my staff, and rent to a couple of people in my local community.

By now, my seed had germinated, grown deep routes, and was not going anywhere!
I knew I wanted to dream bigger, and most importantly, make it a reality. So many months of work, research, planning, and I knew I needed to take this to people who could help make this a reality.

I needed builders, architects, occupational therapists, investors, property managers and everyone in between.

I took my idea to my friend Goro, and asked for his help. He was deeply touched by what I wanted to do. He had been looking for a cause to jump into. A social enterprise, a business that could make a huge impact. Having close family members and friends with disabilities, they understood the need for this type of housing. But more than that, we wanted to empower people to have choice. Where they live. Who they live with. Choice of provider. Choice of housing options. But on top of that, choosing to stay up and play video games all night, have mates over, have a pet.

So Empowered Liveability was born!

We pooled our knowledge, our resources, reached out to our networks, went back to the drawing board many times. We created a model that would work for people with disabilities. Work for Supported Independent Living providers, and with a decent return on investment to encourage private investors to get into the market.But we didn’t want just any investors, we wanted socially conscious investors, who had their own personal reasons for wanting to help people with disability find suitable homes. Not large organisations, but families, wanting to purchase a rental property that would make a difference.

At present, we have 20 houses around Melbourne under construction. We have 3 amazing disability providers on board, GenU, Gellibrand & Melba. We have another 10 houses about to start construction. Several are at lock up stage, and will be ready for tenants to move in by October.

This dream has been many years in the making. Many years of industry knowledge combined with real estate expertise. Many years of research, of focus groups, of getting the right team involved, to make this dream a reality.

By year’s end, we will have placed 90 people with complex high physical disabilities into homes. Out of Aged Care. Out of rehab. Out of hospital. They may not all stay living with 2 other people. They may want to live alone or with a partner or family.

We will make that happen for them… it’s our life purpose. To offer people with as much choice as possible. We want people to grow, change, evolve, become more independent.

The last thing we want to do is tell people with disability how to live.

Live on your terms!