**Please note, no further donations required! We are very excited to announce that we have made our target with a large private donation from family. We are now ready to start our bathroom! THANK YOU everyone for your support :-)
My name is Jodi and I'm Wendy's cousin. I'm setting up this account on behalf of Wendy Gauntlett and her lovely wife Camilla Sleeth.
Please take a moment to read the story below that Camilla has shared with us. Cam and Wendy are raising money to modify their bathroom so that Wendy, who has Osteogenesis Imperfecta (Brittle Bones) can bathe and use the bathroom in their house pain free. The government have let them down so they are organising it themselves.
Let me tell you a story...
I was falling asleep late last night and I roused to hear Wendy crying, she was on the toilet in our ensuite in excruciating pain. “I can’t do this” she cried out to me. It broke my heart.
This is the torture that is bathing and toileting for Wendy. It shouldn’t have to be this way but it is, let me tell you a story…
We moved into our house in Ballarat as a rental in Jan 2016. The bathroom wasn’t accessible for Wendy but everything else about the place was perfect for us. We were in a rush to find a rental because I was starting a new job and finding somewhere accessible as a rental is virtually impossible so we went with it. Wendy had to commute to her old house in Geelong (which is accessible) every time she needed to bathe - Geelong is a 2 hour drive and Wendy would go for a bath and stay there a night and then come back. By the time she got back she essentially needed another bath but that was our weird commuting life for 18 months.
The opportunity came up to buy Bo Peep Farm in July 2016 and our dream came true to own our own farm. The very first thing I wanted to do when we bought it was bathroom modifications for Wendy so that she could live a normal life where bathing and toileting isn’t an ordeal.
Wendy’s OT said we should apply to the NDIS (National Disability Insurance Scheme) to help with the modifications because Wendy is a prime candidate and no one could need bathroom modifications more than Wendy in this situation. We started the process to get the application in. It was a length process with multiple OT assessments, home assessments, multiple builders to quote. The OT had to write up a huge application and then it was submitted.
We waited and waiting. Nothing. I was newly pregnant with twins and Wendy had to continue to commute. I was incredibly sick with Hyperemesis and was completely debilitated to the point that I had to stop working full time at 7 weeks pregnant. Her being away to bathe was incredibly stressful (but necessary). We desperately wanted the modifications finished before the twins were born because we knew the weird commuting couldn’t continue with newborn babies.
We eventually contacted our local member of parliament, #CatherineKing in an attempt to get someone from the NDIS to contact us regarding the application. By this stage the twins were newborn babies. Catherine King was amazing and incredibly helpful; a day after going to our local member, someone from the NDIS called. She was unbearably patronising to Wendy. Wendy was trying to get an idea of what the process was and the time line of how long it would take for the application to be processed … “It’s not a fast process, I have to dot my Is and cross my Ts and ask a lot of questions”. She essentially repeated this phrase to everything Wendy asked. She would not give Wendy an email to contact her on but agreed to call every week to update us on progress.
Approximately 3 weeks later she rang us to say the application had been processed and was denied. DENIED? I remember we were sitting in a café with our newborn twins. In shock! She was extraordinarily patronising and Wendy was crying again (it is not easy to make Wendy cry but this woman had a knack) Her reasoning was that Wendy had made “a lifestyle decision” to leave her place in Geelong and move to Ballarat.
I explained to her that the house in Geelong isn’t somewhere we could live as a family but she continued with this stance. I said to her, “Are you saying that it is a luxury for a disabled person to live with their wife and family?”. “Oh no no”, she replied. But she continued stating the same things and seemed to be saying that Wendy should be living at her old house in Geelong. She also seemed angry that the NDIS weren’t consulted when we bought the property! I asked if she had consulted with Wendy’s OT when making the decision and she said she hadn’t so it seemed she had just come up with the decision in her own brain. She kept saying “You’re asking tax payers to fund blah blah blah”.
We put in an appeal. That was 4 months ago but we have heard nothing. The house in Geelong is owned by Wendy’s parents and they have decided to sell. In a couple of months there will be no option of commuting.
Wendy can’t walk but she also can’t stand. Her legs can’t weight bare at all so the only way she can move out of her wheelchair is to drag herself across from one surface at a similar height to another. This makes getting onto the toilet extraordinarily difficult, especially because she has torn her rotator cuff on her only well functioning arm through years of over use (she needs surgery but she is too high risk for an anaesthetic so she just has to live with it). She also has fractures in her spine. It is always as I am falling asleep that I hear her crying because she puts it off all day until the very last minute because the pain is so bad she is not able to do anything afterwards. That includes picking up the boys (they are almost 7 months old so they are getting heavy!) so she waits until they are asleep to put herself through this torture. Wendy is the bravest person I know but it shouldn’t have to be this hard.
We already have the ceiling hoist installed in the bathroom in Geelong. What we need to do is create a bathroom that is accessible for Wendy and then install the hoist in the new bathroom. The current bathroom is tiny so it is impossible for her to turn around in there. The toilet is in a separate room adjoining the bathroom so we would knock out the wall, remove the tiny bath and shower that is in the bathroom and create a bath that is workable for Wendy in an open plan bathroom. The ceiling will need to be reinforced to have the capacity to hold the weight of the ceiling track, hoist and Wendy dangling from it. The ceiling track rail will run between the toilet and the bath which will be in line. This will allow her to drive her wheelchair under the hoist, get in and access either the toilet or the bath.
This will be life changing!
Love from Camilla and Wendy. xx