I finally got the OKAY TO GO HOME from the NDIS and both Lenny, Faith and I couldn’t believe that this was really happening.
However for me to be able to get home I had to do a shitload of physio and spend more time outta bed, and after about 6 weeks I was able to take a taxi and I would go watch my daughter play soccer and spend time with them at their place rather than them coming to the nursing home to visit me.
Lenny started looking for a house for us to rent as soon as I got the OKAY.
A house that would be suitable for a wheelchair and accessible as well, only because him and Faith moved back into his mum and dad’s home when I went into the Nursing home, so they could help with Faith, and we needed to become that family again and have our own place.
My hubby would look at house after house and by about the 20th house he realized that he was getting knocked back most of the time because he mentioned that I was moving in from a Nursing home in a wheelchair and it was then that he decided that he wouldn’t mention me at all, and just look for something suitable. Lenny eventually looked at 34 houses before getting one that would make do.
I couldn’t wait to get outta there and back into a real family home. The NDIS weren’t ready for me to move so soon and had nothing organised but they understood, and the very first night home Lenny put me in a normal single bed pushed up along the wall on one side then propped pillows and blankets under me before putting a set of Chester draws along the other side with my wheelchair at the end, “You won’t fall outta that fucker!” he jokingly laughed whilst tucking me in and kissing me.
It was unbelievable that very first night being home my hubby and daughter put the huge TV from the lounge room on the kitchen bench and put a mattress on the floor beside me and they cooked popcorn and we all watched a movie together. I don’t remember the movie because I spent the whole night starring at them pinching myself in disbelief that this was real.
My O.T was deadly and hired a hospital bed for me and all the other equipment I needed to make it work at home the next day. Then my “COS” (Coordinator of support) arranged nursing staff and a cleaner as well as a laundry service to help Lenny out and make it easier for the 3 of us.
The nurses would come and go and the only time I would go out would be to see doctor once a month and watch Faith play soccer on Saturday and go grocery store once per fortnight simply because I worried about damaging the hallway as it was so narrow and then the real estate agent would kick us out and I would have to go back to a Nursing home again.
(I know you’re probably thinking that’s stupid of me to think that way? but believe me after what I had been through living in those Nursing homes the fear of returning is real. Even today that fear is real and I worry about the future rental property if ever we have to move.)
After coming home, I had a drive and passion and that was to help get young people out of Nursing homes and also to work with our mob and link back in with elders and the Aboriginal organisations around me – it wasn’t long before that dream came true.
I was only home about a month when I was approached by an Aboriginal organisation called FPDN – First Peoples Disability Network and offered a job as a Community Connector, which I jumped at.
I was so excited and grateful to be out there working with our mob and couldn’t wait to get started, my job description covered everything from NDIS plans and information to checking to see if their health checks were up to date and even some deadly yarning circles.
My first client was a mum with a young daughter who had delayed learning and other issues, so I advised her to seek a full up to date health assessment including her school’s assessment or input and drop into a NDIA office to pick up the NDIS participant evaluation from to check her daughter’s eligibility.
This young girl was my very first success story – she was deemed eligible and got an awesome plan.
Two years have passed since I helped that first client and these days she is doing well in her school and at home and I’m so thankful that I shared the journey with her.
I have met many lovely people over the years and 12 months ago I met a 17 yr old Aboriginal woman who has Intellectual Disabilities whom was very introverted, quiet and had to have her mum close by or her anxiety would go off the radar. She loved animals and her passion was to work with animals. She was attending TAFE studying Animals and her mum had to go with her into each class or lesson, so we met several times and worked through some things and I managed to get her into an animal park where she would care for the animals and feed them.
So, 12 months down the track and this beautiful 18yr old inverted, quiet and shy woman is now out there working in her local McDonalds and loving it.
Unfortunately my position as a Community Connector with FPDN ended 30 May 2018 due to unsuccessful ILC grant funding application leaving the FPDN without funding to continue my employment. I hope that I will be re-employed when they acquire new funds cause I loved that job.
Back in 2016 I came across this not for profit organisation called “CDAH”nCommunity Disability Alliance Hunter, its run for people with disabilities for people with disabilities. In October 2017 started working for them in the “LRC”’ (large residential centres) at Stockton and Tomaree Lodge helping the staff run successful house meetings for residents living there and in November I also started working on another project run by CDAH (Community Disability Alliance Hunter) and Fair Trading called Talkin’ Together.
The project is Aboriginal identified and CDAH brings the lived experiences side to the project and there are 2 project leaders.
The first project leader is a Aboriginal woman who is vision impaired and myself who had a stroke, the third is a deadly fella who works in the background setting everything up and helping us in anyway possible for our mob.
CDAH work with two Aboriginal Fair Trading representatives and together we talk to community and mob about the NDIS and Consumer Rights as a NDIS participant and we talk about Scam awareness also high pressure sales and to call Fair Trading so they can help our mob if they need.
I have been a NDIS participant myself now for 5 years and whilst I’m grateful for them getting me outta the Nursing home and bringing my family back together, I’m also finding the NDIA to be very removed now – once you could call your NDIA planner anytime of the week and now you can’t even really talk to them, all you can do is email and hope someone replies.
I was lucky enough to cross paths with an organization called The Summer Foundation at a guest speaking presentation I did and they asked me to become an Advocate for them, I was so shocked and grateful to represent such a lovely organisation. Then about two weeks later the Summer foundation offered me a brand new 3br apartment that would be my forever home and I would never have to fear returning to a Nursing home ever.
I was so excited when we moved in – the apartment is fully fitted out with electric doors, windows, blinds and I can operate the lights and air conditioning as well as having height adjustable benches and ceiling hoist and wider doorways and 24 hr care if need be.
So we moved in 2016 and the NDIA chose me on the understanding that I would be funded for “SDA” (specialised disability accommodation) which is what’s required to live in this apartment and my NDIA planner at the time said ‘yes you’re eligible’ and were waiting on an assessment to be done.
But last November 2017, I had a NDIA chosen independent O.T to assess me to see if I was SDA eligible? and I waited until March 2018 before I heard anything and it came back as DENIED SDA, so I did a “FOI” (Freedom of Information) form to get me paperwork and assessments ruling and when that arrived I read through it all and the NDIA assessor said I was SDA ELIGIBLE.
The NDIA have turned my beautiful family’s life upside down, my hubby is depressed and he has never been depressed ever and our daughter stressing out finding it hard to focus and study at UNI as she’s worried about everything and doesn’t know what’s gonna happen and I’m trying to keep us all together without the stress and arguments.
So I’m fighting NDIA and have lodged a review of a reviewable decision with Disability Advocacy and the next step if I get knocked back again is the ACCC and media – whatever it takes to get the outcome promised.
I am now self-managing my NDIS plan and hire my own private support staff and choose who and what I want and it’s amazing, I wished I done it sooner…
I would like to thank so many deadly people whom have followed me along this crazy fucked up journey that has now become my life.
Luke Pearson is a Gamilaroi man, and is the founder and CEO of IndigenousX.