There's no place like (the right) home

At the young age of 52, Bev Warn became a paraplegic and found herself living in an aged care home…. a place she didn’t fit into on so many levels. A six-year fight to live independently in her own home followed.

And with the help of a Support Coordinator from LiveBetter, Bev’s now living the life she wanted in her own flat.

While the NDIS has made circumstances like Bev’s an area of focus following the interim findings of the Royal Commission into disability services, this is a compelling story that needs telling. Situations like this happen more often than you think - it could happen to any of us.

You’ve heard the horror stories about younger people with disabilities who are shuttled into nursing homes because they can’t find anywhere else with the support they need?

Well, Bev wasn’t young when an accident left her a paraplegic and she was swiftly moved into a nursing home in regional NSW. But she sure wasn’t old - she was only 52 when this happened.

Imagine as a middle-aged person having no control over when you went to bed. If you’re a night owl like Bev, you’d like going to bed when your body’s signals tell you to. Like maybe 11 pm. How would you like it you were forcibly moved into bed mid-afternoon and sometimes stuck there until mid-morning? (No wonder she got a pressure sore. Sadly, there just weren’t enough nursing home staff to put a dressing on this wound.)

Your disability means you can’t get in or out of bed, put your shoes on, or shower without help. Being in a nursing home means you eat when and what you’re told.

Bev had had a thriving career as a special education teacher at school and university levels. She never minded a challenge - as a single mum raising two children, she studied for her degree and then worked full time. I think we can all agree Bev was clearly a very capable person.

But it was a simple misstep at her back door in August 2013 that changed her life forever.

“I fell down some stairs in my backyard and got a spinal injury,” says Bev. “Whilst in rehab I was told I wasn’t allowed to be discharged back home so was sent to my only option at the time – an aged care facility in the central west of NSW. Combined with the lack of notice, this came as a major shock to me and I remember crying as I was wheeled out to the ambulance.”

She had to sell her house and give away all her furniture to her daughter. The aged care facility needed a hefty deposit, too. Somehow through all this Bev actually continued her work as a distance educator at Charles Sturt University. After some time, she had to give it up though – aged care facility routines aren’t really compatible with residents who work, and you just have to fit in with them.

Recalls Bev, she was in a four-bed ward for the first three years. The average age of the other patients was about 80 to 100 and here she was in her early to mid-50s.

Because the ratio of care staff to residents is lower in nursing homes than disability care, Bev just wasn’t getting the support she needed – being stuck in bed due to a need for two staff to use the standing wheeled hoist and missing meals became the norm. She also had a wheelchair that staff often plonked her into the wrong way.

“I’d be on a diagonal in the chair, my head off to the side, the brace behind my neck. It was painful. My mental health was significantly impacted for those first three years. I think it was the lack of warning of where I would be discharged to. I was led to believe I would remain in rehab for longer as I was told there was still room for improvement. Living in an aged care facility hadn’t even entered my mind, so it was a real shock,” she said.

Staff at the residential facility thought Bev was depressed because she wasn’t interacting much with other residents. But Bev had her reasons.

“I deliberately didn’t get close to other residents for a few reasons. There’s a lot of death in an aged care facility and I don’t take death well. I also chose not to eat with the other residents. That helped me forget I was in a nursing home. I didn’t want to play bingo, watch 1930s’ movies or do Zumba. I didn’t join in as I just wasn’t interested, not because I was depressed. My interests were different like working on my laptop and running an eBay store selling charms.”

On top of all that Bev’s children had also started families of their own. The lived some distance away so couldn’t visit much as they were not able to stay with her.

When the shock settled she hatched a slow-burn plan to get out. Her escape strategy pivoted on applying for a National Disability Insurance Scheme (NDIS) plan.

“When the NDIS rolled out in the Central West in July 2017, I didn’t really understand it much, but I still applied.”

Eventually, an NDIS planner came out to see her in person and talked with her about her goals and plans. “It did take a while for the planner to get back to me because as I was in a nursing home I needed a specialist planner.

Bev faced numerous roadblocks in her quest for freedom. One such roadblock was when she rang the NDIA to find out why her application was taking so long. Bev was told they’d asked her age care facility many times for her care plan to no avail and were on the cusp of scrapping her application. When her care plan was finally received, it was found to be highly inaccurate – it worried Bev that she would never get approval for Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) funding in her NDIS plan if it wasn’t corrected and resubmitted.

Bev was on a quest to live on her own in SDA – the right kind of home for her. A friend told her that affordable housing social enterprise, Housing Plus, was building public housing villas and she wanted in. Contacting LiveBetter’s Support Coordination Team in October 2018, with her NDIS plan finally in hand, Bev looked to LiveBetter to help her apply for eligibility to live independently.

LiveBetter Support Coordinator, Kristen Holgate, was assigned Bev’s case. “Unfortunately, only a small percentage of NDIS participants are eligible for SDA,” said Kristen. “But I knew we had to do what we could to help Bev’s situation. I organised an occupational therapist to do a thorough assessment of Bev’s abilities and then followed this up with a very lengthy report to the NDIA. We just didn’t let up until we got the answer we wanted.”

Thanks to LiveBetter’s dogged advocacy, Bev got her SDA funding approval in May last year. Kristen continued to work with Bev to find out which services and supports Bev wanted and then helped her find the right ones. After all it’s all about consumer choice under the NDIS.

Kristen says: “I helped her find providers to follow up on her own decisions around who she wants to support her. That’s different for each participant. My job was to keep all the different pieces of the puzzle together including the huge pool of providers all working together to achieve a good outcome for Bev.

“I sorted out the urgent hoist issues for her possible new home and organised funding for a ceiling hoist that needed only one support worker not two to move Bev to and from her bed. It made a world of difference,” says Kristen. Bev also really needed a better wheelchair with a bit more grunt. Kristen helped organise one allowing Bev to lift herself so she could reach things on shelves above her at home and in the supermarket, for example, and speak to people closer to their height. This high-tech wheelchair even allowed her to move herself. She’s also got an app on her phone to tell her the last time she’d repositioned herself in her wheelchair. All that adds to her independence - and no more pressure sores.

And the outcome of all this effort? Bev finally moved into her new unit at the end of 2019.

Kristen says: “I popped in to see Bev in her new home a couple of days after she moved in. And it was a different kind of visit. Bev was excited to show me her home, where she had put everything, how she’d set it up. For the first time, the two of us weren’t working through a list of things Bev needed or a ‘to do’ list; it was just Bev showing off her new house to me.

“I am so happy she is somewhere that is meeting her needs and is now in a place of her choice.” And as for Bev, she’s looking forward to having her grandchildren stay with her. That couldn’t have happened when she was in a nursing home.

She remembers her first night in her new flat. “I realised I could go to bed when I wanted, eat what I wanted and whenever I wanted,” she says. For now, she has 24/7 support but expects it to taper off as her independence increases.

Bev says: “I’m back in control of my life. I set my own routine. I love doing my own grocery shopping – it’s wonderful opening up the pantry or fridge and seeing what’s in here. The food in the aged care facility was high in fat and sugar and I had no choice about my diet there.”

“I’m finding more social outlets like trivia nights and meat raffles at the local pub. Even op shopping. I like living by myself and making my own decisions. And I’m wild about making diamond art where you use rhinestones – that look like diamonds – instead of paint. You really lose yourself in it and the time flies. There’s a lot I’m looking forward to.”

Kristen says Bev was in a complex situation.

“Regrettably, there are a lot of people in really inappropriate housing for their needs. This is something we know about and can do a lot to help them. NDIS processes can be daunting. We recommend people have a think about including support coordination in their NDIS plan so you have someone to listen to your wishes, then find and negotiate with providers to allow you to make informed choices. That means you’re in control of the supports you need and want. We can also help you prepare for your next NDIS plan review and really work alongside you to build your skills.”

This is such a wonderful outcome for Bev and a positive example of what is possible under the NDIS.

To find out more about what a Support Coordinator from LiveBetter can do to help you or someone close to you on an NDIS plan, contact 1800 580 580.