My daughter, Freyr, was born in Australia in 2001. Her early development was delayed and significant milestones were not being met by 12 months. After years of doctors appointments and tests she was diagnosed with Rubenstein-Taybi syndrome. This is a lifetime condition and Freyr will not mentally develop past the age of a 4-5 year old. At 19 she is mute, still in nappies and requires 24/7 care for feeding, toileting and other everyday activities.
When Freyr was younger I investigated care options. The disability support system at the time was woefully inadequate with state care being the primary option for the full time care Freyr required. Although I desperately needed help and respite from being her full time carer, I found the state care to be too high risk due to systematic abuses inflicted upon people in these institutions. A friend had a 14 year old son who was sexually abused in such an institution and I did not want to put Freyr into an environment like this.
I sought advice from Child Safety and was told that people in these institutions were frequently moved every 2 weeks and that once she was in their “care” it would be difficult for me to see her. I could not accept this reality for my daughter and knew there was a better, safer and more supportive way. I knew and felt intuitively that there was a way for Freyr to be included in a “normal” life and that has been the driving factor behind this project and my vision for my daughter’s life – as well as mine!
In 2017 the NDIS scheme rolled out with promises of “choice and control” but I was quickly told by planners that the vision I had for my daughter’s life “DOESN’T EXIST”. They were not prepared to fund Freyr to be able to live in a way where she was included in everyday life and had a sense of belonging. They did not believe in her being part of a natural community and proposed expensive, unworkable and isolated supports that did not meet Freyr’s needs.
At the point of Carer burnout and physical exhaustion I sought refuge in Philippines and later Bali where I was able to self fund a full time, 24/7 Carer/Support Person for Freyr for $350 a month. This was covered completely by child support payments which also allowed for special schooling support and enough left over for me to build a bamboo home in which we could live.
Over the last 4 years I have seen Freyr thrive among the local community, with genuine supports and social inclusion. Where she is accepted and welcomed for who she is and where her existence adds to the experiences that everyone cherishes together.
With Freyr turning 18 (December 2019), Child Support payments stopped and I made plans to return with Freyr to Australia to revisit the NDIS to see if supports could be put in place to create the inclusive living arrangement that she had so successfully been integrated into in Bali.
Freyr and I returned to Australia in August 2019 with the intention to organise NDIS and Freyr’s Disability Support Pension (DSP), however, without a full time Carer/Support person, I had to return earlier than anticipated. I was unable to navigate the complex forms and systems required while looking after Freyr 24/7 and the caravan park that we were staying in had people in that posed a danger to her safety. I was hugely relieved to have Freyr in her safe environment again with her trampoline and supports. The applications for NDIS and DSP were subsequently rejected.
Freyr does not have a “home” in Australia. She needs support in place the moment she arrives in Australia. It is dangerous for her to be without support or housing. NDIS have not progressed her application as she is not yet in Australia. This is effectively putting her life in jeopardy.
I continued to petition and fight for Freyr to be allowed to make an NDIS plan – contacting Disability Advocates and seemingly making progress only to then be told that she wasn’t eligible because she’s doesn’t meet “Residency Requirements” – going back to “square one” then repeating the process.
When Covid hit, I cashed in all of my superannuation in (June 2020) to cover existing living costs and to keep Freyr’s Carer on, however these funds have now finished. I have since sold all of my belongings. I have no super, savings or income other than what I can make day to day presently (around AUD $5-25/day).
I have started a business in Bali running workshops for children. This covers basic daily costs and I have taken a small loan from my father to cover the cost for a new Australian passport and renewed an Indonesian visa for Freyr. Her last one expired on February 28th 2021, the day we were offered a flight by the Australian Consulate to return to Australia. Freyr was unable to take this flight as she will not wear a mask and is unable to take a PCR test.
I no longer have funds to cover Freyr’s Carers costs which puts us both in a very difficult position. When I am looking after her 24/7 I am unable to do any additional work to cover basic costs for food and housing.
Freyr is an adult now. Legally, the Australian Government is responsible for her wellbeing – I have done everything I can to care for her and give her the best and safest possible life. I need to earn a livelihood and Freyr needs support funding TO SURVIVE and to be CARED FOR. She needs financial support as an Australian Person with a Disability.
Freyr needs financial support for her disability. I can no longer afford for her to go to school and her carer is working on a casual basis without pay. Freyr has no communications device and has no access to therapy or any other supports. I can not afford any medical needs or continence aids for her (she is in nappies full time).
I am exhausted and have exhausted all avenues to try to get support. Freyr needs help.
Freyr needs 24/7 support in order not to harm herself.
She has no sense of danger and can not protect herself from danger.
She is incontinent and requires regular cleaning. She has no concept of feeling full and will eat anything she finds. She will eat everything in a fridge if it is not locked.
Freyr is very strong and can push people over. It is very exhausting looking after her.
Freyr needs support for all of her physical and daily care needs from showering and toileting to eating and dressing. She always will. She has not and will not progress developmentally past the age of a 4 year old.
We were promised an NDIS plan in September 2020 and it was intended that Freyr would return to Australia with her full time Indonesian Carer/Support Person. Her Carer would spend 6 months training new staff and help Freyr transition into life in Australia, however, NDIS still have not created a plan to support her.
This process has gone on far too long and is causing significant anguish and distress to both Freyr and myself. I can not keep hoping that Freyr’s Carer will work unpaid.
With Freyr being in Bali and myself looking after all of her financial costs, we have saved the Australian taxpayer well over half a million dollars. I am now seeking support for Freyr until she can return to Australia. This would be at a fraction of the cost required once she is in Australia.
To survive, I have set up a business in Bali and I will continue on this path to create the model for a Vision for Freyr to live an inclusive life and be supported and have access to Quality or Life and be safe. Where I can continue to be part of her life but not overwhelmed with her care. Where I can continue my own work/dreams/passion and have a livelihood and where Freyr can have her own “independence” and daily programs where she can contribute in a meaningful way and develop her own skills, talents, friendships and live a full life.
This is a petition for Freyr to have her disability needs taken care of as an Australian Person. Please show your support for Freyr and sign this petition:
I’ve proven it’s safer and BETTER for Freyr to live in Inclusive community … to be supported by “ordinary” people… to be Who she is, that this is a natural way for her to BE… Especially in THIS culture, where when we go to the market and anywhere around publicly, people always smile and are happy to see Freyr and want to say hello to her and help her. It’s really wonderful to feel accepted and included socially like we do here… Freyr can sit down next to anyone and they don’t mind… even she starts trying to eat their food… they offer it to her! It’s quite amazing: I’ve always been told here that Freyr is a Blessing. Sometimes people just want to meet her and hold her hand because they believe it’s good luck! That’s kinda weird but still, we get to meet new people and it’s social stimulation for her… (pre-corona)…
Having “normal” kids here too through running our workshops (our only income at present) enables kids to get to know about Freyr and for the younger kids especially, to form an awareness and understanding about “disability” and to develop tolerance and empathy. Just the other day… I had two brothers (8 and 9 yrs old) here making bamboo robots and the older sibling was very curious about Freyr and was asking questions about her and I could see that he was trying to imagine what it’s like to be Freyr and trying to “understand” her world… When we lived in Australia and when Freyr was in primary school, kids of that age were like this – and they showed natural empathy and inquisitiveness about Freyr and even became quite protective and caring of her. Since Preschool age even, I saw how Freyr brought out empathy and caring in other kids – even ‘bullies’ (one in particular) had a total behavior change and become protective of her like a “big brother”.
I recall about when it came to Freyr starting high school in Australia (2015/16 I think), there was nothing available for her (where we lived in Australia) that didn’t make me feel like she was a “zoo animal” in a cage during lunch/recess – with barely any support for her to eat her food (could just be a far North Queensland thing). And though a lot of the kids in that high school had grown up with Freyr and had been in a class/school year WITH Freyr (she was put in different classes each year and never made any long term friendships during primary school) – by grade 5 or 6, they had mostly “outgrown” Freyr and moved into the “teenage” world… So it’s nice for me to see that even though Freyr is older now, young kids who are still in that “formative” stage of development and “child-age” perspective can still relate to and be part of her world and environment.
I will be really glad if Freyr can be here, in this house that I’ve built For her… where it’s safe for her… where I can always be “aware” of what she’s doing; can see/hear her without her sounds/echolations reverberating off concrete walls and echoing endlessly through my ears (also… I can sit at the 3rd floor and work with Noise-cancelling Headphones – but still hear her enough and can feel when she walks back into the house/living area (being a bamboo house, the whole thing does move/reverberate when people walk around/move and there is no sound insulation at all). (She has her trampoline in the downstairs where she spends a lot of time.)
I don’t know what to do to help her needs physically nor for therapy in terms of why she “shrieks” and “grunts” most of the time, though luckily all our neighbours except the orphanage right next door can close the doors and windows of their air-conditioned boxes and not hear her. It’s very frustrating as a parent not knowing what can be done to “help” one’s child – She has other behaviors of concern such as nail-biting – which I’m not sure is caused by pain in her mouth due to her teeth being overcrowded or whether she just does it out of anxiety/ needing stimulation. She also has difficulty chewing and overeats, constantly raids the fridge/pantry when she’s not on the trampoline which is why we have to lock it (but she has her own bar fridge where she has access to cold water and snacks).
You can see more about our journey and what we are up to through our Instagram: @natalieandfreyr