OTHERS DON'T KNOW – BUT WE DO!
FACILITATOR'S OF THE ROARHEART™ PROGRAM
RESCUE THEIR AUTISTIC CHILDREN FROM
'EDUCATION' AND FAMILY VIOLENCE
IMMEDIATELY BECOMING 24/7 HOUSEBOUND CARERS
DUE TO HEAL THEIR TRAUMA
* including gender binary
Parliamentary Inquiry Into Services for People With the Autism Spectrum Disorder
‘Living with autism’ will mean something different for every person diagnosed with Autism Spectrum Disorder (ASD). For some ASD is experienced as a disability that presents significant challenges for everyday living, for others ASD is part of the neurodiversity of humanity, a condition to be celebrated rather than ‘treated’. The diversity of experiences of people with ASD is a challenge for public policy. It means that governments cannot support people with ASD through a one-size-fits-all model. Each individual is impacted by ASD differently, and in addition, many will have other co-occurring conditions that will complicate how their ASD is experienced. The challenge is to ensure that people with ASD have access to the supports they need – either through specialised disability services or through mainstream services that are fundamentally inclusive.
Letter written to Department of Human Services (DHS) by ROARHEARTS™ program facilitator advocating for herself and her child to be accepted for the Carer's Payment to appropriately care for their traumatised autistic child and prevent homelessness – again!
This letter is written eight months after the first contact with DHS about their impossible and most difficult circumstances. It took me 11 months, after many, many re-applications and re filling out additional forms for my application to be accepted for Carer's Payment.
My child's other parent, my ex-partner, chose to pay for all of our expenses, whilst having to live under the same roof (could you imagine?) protecting our child from more trauma until we received Government financial support, preventing us from homelessness.
By the time we become 24/7 Carer's we are in need of IMMEDIATE financial assistance, as it is impossible to financially support our children with disabilities or ourselves when we CANNOT work. However, instead of immediate increase of financial support we have to work out the plethora of administrative requirements amidst a time where we're smashed up taking up time and energy we simply DO NOT HAVE and MONTHS before getting the financial help we so desperately need.
We are women with disabilities, Caring for children with disabilities having to climb Mount Everest to meet our children's basic and disability needs. Our children's experiences and our journeys are painfully similar.
We hope this letter gives hope to those experiencing what we have, that they and their children are not alone. Millions of others who have no idea, what our journeys are really like. And those 'millions of others' are in our family, friendship, education and professional circles they are not capable of grasping what it is we are experiencing.
We hope this letter gives some insight into what we believe is not uncommon for parents like ourselves.
What really concerns us is this. How many of us have, are, or will experience this? How many will survive these unnecessary and inhumane insane obstacles to receive appropriate support just to get by? How many actually don't? And where to do they go? What do they do?
To Whom it may concern,
I am writing to you in hope of supporting my application for Carers Payment and to provide an accurate overview of our current circumstances. I cannot currently meet my child’s disability needs, our increasing daily challenges or trauma related needs, whilst trying to adequately support ourselves on the Newstart Allowance.
We are suffering and facing a very real threat of homelessness in the near future. To add to this we are also faced with managing a very dangerous and prolonged Family Violence situation. We have experienced suicidal thoughts and are in tremendous need of support and help just to get through each day.
I have engaged two friends to be our support team and assist me to complete some of the lengthy and difficult administrative requirements for our extremely complicated situation. Trying to meet my child’s diverse and complex needs at this time without cooperation from medical professionals and no money is not only impossible, but very time consuming.
I am my child’s 24/7 Carer for his Physical, Emotional and Psychological needs in every regard. This includes a high level of care not only for his disabilities, but also to assist with the daily challenges he faces due to his current state of trauma (See attachment: Affidavit). For this reason I am unable to physically attend appointments or activities of any kind, outside my child’s safe-house.
This includes our struggle to take care of our most basic daily needs such as grocery shopping or being able to leave home in emergencies, as I cannot leave my child’s side at the moment without re-traumatising them. They have become entirely housebound and has disengaged in mainstream education.
RIAC are currently searching for disability assistance/support for us both in this unique and desperate situation.
I became my child's full time Carer for the past 8 months, without ANY family support in place whatsoever. We are currently living in a safe house, due to our Family’s Violence which has recently escalated again. Our families stalking continues to add to our very fragile state at the moment and my child has declined significantly because of this.
My child's current state of emotional and psychological distress, makes it impossible for me to look for work and attend any required appointments necessary to obtain employment. They require personal and ongoing care for significant periods of time, which far exceed the equivalent of an 8 hour working day. This workload of continuous care is around the clock, 24/7 both day and night, every day of the week.
Some of the major Functional and Behavioural Indicators around my child’s current condition include;
Disengaged both from mainstream and alternative education due to expectations placed upon my child's which far exceeded their capabilities, causing them to shut down in class and at home. These environments were damaging to their mental, emotional and physical health.
Stuttering, my child cannot get their words out unless they are calm and under zero pressure (either real or perceived)
Self harm; starving themselves by not eating enough food, suffering major loss of appetite
Needs to be prompted to shower and wash properly along with other tasks to maintain their personal hygiene. My child needs assistance to correctly wash themselves and is unable to dry themselves on their own
Goes days without talking, it’s too much to string a few words together due to their mental fatigue and burnout
Does not talk to anyone he doesn’t know, and barely talks to people he does know. I am required to speak on their behalf most of the time
Refuses to sleep, EVERY NIGHT due to the sheer terror of recurring nightmares they are experiencing. My child prefers the quiet and calm that the night provides (wishes to be nocturnal)
Crying and emotional outbursts several times a day. My child is in a constant state of anxiety and agitation which escalates quickly into foetal position. This includes difficulty breathing and falling into a state of shock (temperature rises and falls, experiences nausea etc) and obsessively mentally–verbally berates themselves.
Application of ‘professional advice’ and methods given to me for use at these times, has been proven to only intensify and escalate my child's state of distress.
Can sometimes take hours to calm down from a panic attack or meltdown. Although my child's calm is usually short lived, as their levels of anxiety spike again quickly and frequently prolonging their state of distress
Does not verbalise their needs, as most of the time they are unable to recognise them for themselves. This means as their carer, I am constantly having to monitor them and read their non–verbal cues in order to know what their needs are in any given moment, (they are not able to be alone for long) and accurately identify these before the onset of a meltdown
Needs to be repeatedly prompted and reminded for even the most simple of tasks. My child experiences difficulty in understanding what is being asked of them especially when they are struggling (which is most of the time)
Has no desire or capacity to have more than one friend at the moment. This is limited to maximum of a few hours at at time, with long periods of solitude for days/weeks in between, in order to re-engage again. Even time spent with their ‘best friend’ requires regular breaks (downtime) and at times they may not even engage when together.
Is living in a constant state of panic and fear given their trauma around the recent loss of all main family supports. In addition to this, both myself and my child continue to experience Stalking and prolonged Domestic Violence.
My child displays many unusual repetitive/obsessive behaviours, which have increased significantly with their current state of distress.
Cannot leave the house due to their paralysing fear and overwhelming anxiety. My child's deeply distressed state (meltdowns) happen frequently, for extended periods throughout the day and night. This results in severe exhaustion for both of us, as I tirelessly work to assist them through this extremely painful and desperate merry-go-round.
Recent trauma has also triggered my child's OCD catapulting it into other unexpected subtypes, meaning they have obsessive compulsive thoughts about nearly everything now. This causes total burnout for us both– it is beyond words how we get through each day!
Requires me to do absolutely everything for them as they cannot cope with requests for self care or personal responsibility. These are perceived as a ‘Demand’ which again triggers their trauma resulting in more panic and meltdowns. My child is not functioning at a normal or age appropriate level in any regard. Their PDA (Pathological Demand Avoidance) has intensified.
The daily struggle we face trying to survive on a low income such as Newstart Allowance, has made it impossible to meet even our most basic needs (which are much higher in comparison to families who don’t have children with disabilities) eg. medical costs, special/disability needs, educational and living costs.
This means that my Child with disabilities and Myself, their 24 hour Carer, are now facing homelessness again in the very near future.
We are yet to receive a response from my child’s Psychologist after requesting the Medical Form be completed again to include the information you require. I am now faced with having to find another Professional to sight and assess my child ($300 consultation fee, plus an additional $1000 if we are required to have another assessment done).
We do not have any more furniture or other personal items to sell in order to fund this which we have previously done just to get by. It is money that we simply do not have! My only option to fulfil the request for additional information was to utilise the After Hours Emergency Service ‘Doctor on Call’ to come to our home- to which they still did not attend.
WE CANNOT GET A MEDICAL PROFESSIONAL TO OUR HOME TO SIGHT MY CHILD.
I have contacted emergency services consecutively over the past 3 days/nights, but was unsuccessful in my efforts to get anyone to attend my home to sight my child. I still have not been able to get the Medical Form completed correctly or have someone write me a letter of support.
The following is a detailed account of just one night spent on the phone with Medical Services-
Called the Doctor on Call service to make an appt for a home visit at 1am.
My child is in tears and having a panic attack, absolutely beside themselves fearing they are going deaf with their OCD and I cannot calm them down.
Told the Doctor on Call what happened. She advised they have no appointments available tonight at all. I explained that I have been trying to make one for 3 nights in a row now (their service is available after 6pm only), and still have not been able to get someone around here.
We are housebound and I cannot get a single professional to examine my child and make sure they are ok. I told her my child is having panic attacks and meltdowns that are sometimes lasting hours.
She asked me does he have a weapon, are they suicidal, can they breathe etc. and then advised me that this is an Ambulance issue and I need to call 000 immediately.
I call the Ambulance service and get treated like I am an overreacting Mum and a time waster.
They put me through to a lovely and calm Paramedic. He asked me all about our situation, my child’s Autism and OCD, and the frequency and severity of Meltdowns etc. I also told him about the Domestic Violence we experienced recently which has contributed to my child’s trauma and panic attacks.
He was lovely and seemed to just get it which was really amazing. He advised me that he could send an Ambulance around at anytime if my child spiked again, otherwise he would make sure that he got someone here to visit us tonight.
Half an hour later he transferred my call and engaged me with the Specialist Emergency Service Doctor. I speak to a Doctor based in another City in another State (See attached correspondence)
He advised me there is nothing that can be done right now and I have to take my child to hospital, despite the fact I am unable to get them out of the house.
He acknowledged from what we had discussed that we are clearly in desperate need of support at the moment however, he believed that this is largely due to Social factors and it was not a Medical issue. (My child is complaining of a sore ear every night which still has not been seen to, in addition to them experiencing trouble breathing in the midst of a full blown panic attack)
I was advised that if i wanted to be seen my only option was to put my child in an Ambulance and take them to Royal Children’s Hospital, and wait with my child at Emergency Department to be seen by specialists around 8am when they start work. (It was 3am by this time, that would have been a 5hr wait with my child)
The Doctor insisted my child needed treatment for their Autism. He advised me there are specialists at RCH who are there to stimulate and distract the child which would allow me to get things sorted out with the relevant team (Paediatrician, Speech & Behavioural Therapist etc). In addition to this, he told me my child will be given Ritalin as he believes that they need to be on medication.
I wasn’t consulted on my position or feelings around this. I was instead instructed this is what had to happen as if there is no choice involved as a parent at all. I refuse to give my child a speed based medication for their Trauma or OCD or painful ear.
I ended the phone call deflated and exhausted. We were on phone all up for over an hour and a half.
Nobody came, No doctor, No ambulance. My child still not been sighted or checked over by a medical professional!
Of the 5 individuals I spoke to that morning, we were lucky to get a really understanding person in the middle (Paramedic), but were quickly hand–balled off again into the merry-go-round of different services and professionals who disregard my concerns.
Instead of someone examining my child to make sure they was ok, they insisted I need to be engaging with multiple specialists (outside the home!) to begin ‘treating’ their Autism by giving them medication masking the effects of their trauma.
What an absolute nightmare!
We were totally exhausted by this stage. After spending 2 hours on phone, countless conversations and still no help we went to bed around 3.30am. Sadly this was not a unique situation or a once off, but one just of many occasions that reflects a typical night of extreme distress and suffering in our household.
COSTS OF LIVING
Due to my child not being able to leave the house, we try to order our food online where we can. This needs to be organised and done in advance with minimum amount for a grocery order being $50 (we are unable to quickly duck out when just one or two items need replacing). To add delivery on top of that is around $20+ extra.
We usually have to wait at least 2 days before receiving our groceries.. Sometimes for example, we run out of toilet paper and have to ‘hold on’ until our delivery arrives. The supermarket will automatically replace specific items with a similar product if something we ordered isn’t available. Due to my child having a disability and being so particular about what they eat, it has to be exactly what I have ordered and not just ‘any’ food because he will not, cannot eat it.
This leads to precious food and money being wasted, as I cannot force them to eat a substitute food that the supermarket has chosen. My child will then meltdown without having enough food to eat, so I AGAIN have to order more food (minimum $50 with an extra cost of $20 delivery) and wait 2 more days for the Supermarket to deliver the items I initially ordered, because of foods that were substituted/replaced on my behalf.
We do not have a car at the moment, as we were forced to sell it to keep up with our daily expenses and medical costs. In emergency situations I have to either pay for a hired vehicle. This is expensive and not financially viable.
We've received no child support since my child was born and missed out domestic violence top up from Government because I have to call within 7 days of the incident.
We have no money for specialists/interventions; Paediatrician, Psychologist, Occupational Therapist, Speech Therapist, therapies or disability aids for my child.
We have no finance for my child educational costs (average $4,000 per year); books, materials, resources, travel, programs, activities.
I'm aware that the current financial cost for a medium family having an autistic child is $34,900 per annum.
We have been advised that our electricity will be disconnected this week and estimate being able to remain in our home for the next few weeks at very best, before becoming homeless again.
We look forward to your response and hopefully an urgent re-evaluation of our circumstances, in order to have our Claim successfully paid and backdated to the date of first contact.