Living on the edge of the abyss - we must help each other
In the previous article from the UK (Joanne Jones 12th January 2023) written about Lucy a mother of a disability child who took her life just before this last Christmas. It is heartbreaking and devastating knowing that someone has given up in trying to do the best for their child because it was made so hard for them by an uncaring system, and the lack of help or care can send any parent spiralling down. There go I and many others, but for the grace of God.
The sadness and despair of it all is too much. The death of a mother who tried so hard to fight for all her child’s needs, makes it even more important and urgent that we realize the absolute need to support parents of disability children and to support each other because we cannot do this on our own. A society that turns its back on those in need will suffer the same fate on themselves as empathy withers up and dies in the conquest for money. Those who are vulnerable and ignored by society perish as the system fails to do right by them and that is injustice in itself which must be fought.
As the article and post noted – by Joanne Jones founder of the “Can do community – speech therapy (January 12th, 2023) she wrote about Lucy, a lovely mother who had to fight for so much for her disability child, for therapies, for everything and it was not her son with all his needs that was the main cause of stress, but the actual effort of fighting the system to help her son. It is the same for parents of vulnerable children in Australia with the NDIS disabilities system not always making it easier to get help for needy disability child but making it harder and tougher to get the funding we need for our disability and nonverbal children
The article noted “If you don't have a child with special needs you may look at those who do with sympathy and think 'boy that must be hard' It is true that having a child with additional needs comes with additional challenges, but that is nothing compared with the challenges that come with 'the system'
You see the system does not support these parents, as you may expect. It puts barriers in place, red tape in place, it holds back, sends complex forms, discharges, denies, reduces, holds back, and chooses. I often find myself describing this system as abusive and I find a lot of the trauma that these parents go through is not because their child has additional needs but because the system makes it impossible.”
It’s true, we the parents have to fight so much for our child we start to get battle fatigue – yet if we do not fight for them they will not get what they need. So it becomes a matter of life and death for our child to survive this world and for us the parent to keep going. It is literally life and death for the child and life and death for the parent. Because if the parent does not keep going that child loses their main lifeline in life for their wellbeing. Mothers and fathers too need to have their wellbeing made urgent too.
We need to know other people support us or the sense of being alone and the sheer exhaustion will take us down. When parents in this situation try to explain it to others it is almost impossible and so then we can become isolated for the lack of understanding. There are those who do understand though even if it is others parents or people who have been through it too or know someone like that. We need to know that we are not alone in all the stress and battle or more will give up like Lucy. In light of the stress of cost of living rising and the recent pandemic there is even more stress on parents who were under it before just trying to look after their vulnerable child. Even more now we need to help each other even more we need others in our lives.
When my son was first diagnosed at 3 years old I completely did not know what to do, myself and then husband were thrown into a whole other world that many parents have experienced and will to come. I felt so lost so alone in it all. There was an exceptional case worker told me you need one to two good friends to talk to about all the things you are facing for your son and everything you go through with him - she said you can count on one hand the sort of person you can share with and trust. They don’t have to be involved with disabilities themselves but just a friend you can share with it actually helps relieve stress.
Parents of course also need practical help yet it is not always available from our own disabilities system the NDIS – so fickle and profit orientated – giving with one hand taking away with the other. Saying they will help and then cutting off the help and or funding. How contradictory and hard on the very vulnerable and their parents. One of my friends who I did talk to said I don’t know what to do to help you - I just need practical help and emotional support I said - I meant I just need to know someone is there for me to listen to talk to so I am not alone.
As a mother or father of a disability child we must have time out or we ourselves go down. We have to have a break for a walk for the beach time to think and relax or the stress hormones will build up too much and we will want to give up. We have to have our dreams for ourselves and do the things we love as well as all the things we must do for our child. It is a matter of survival for you and for your child.
We also have to fight for our rights as parents of disability children to freedom from fear of our children not being protected from harm, when they are in care, or school or respite. We have the right to peace of mind regarding our child. We must make others aware of what is going on in disabilities with providers bullying, exploiting our children’s funding. Allowing abuse of children who are non verbal or unable to defend themselves because of their disability is criminal, and yet the providers are still able to get away with it because without cctv cameras there is no accountability. They make all sorts of excuses, privacy, upsetting the workers, not respecting the disability persons in care – these are all just that excuses because they don’t want the hassle or the accountability of putting in cameras to protect the vulnerable in their organizations and they don’t want to be sued for the abuse that is remaining hidden.
As I said to the police superintendent when my son was first assaulted – parents are already living on the edge looking after children with disabilities and when you fail to do anything for us when our children are harmed or the fact the are harmed can send parents over the edge even further. He still would not question the worker involved would not even try it was shocking.
We fight for our children because we love them – mother child attachment is very strong and parents are desperate when their child’s needs are not being met and parents themselves go down when their needs are not being met. The government needs to step up and stop fighting parents in the NDIS system even putting lawyers against them to cut off funding from their child and even those with disabilities are having to go to court to defend their right to funding for help. This should not be!
The article notes “And if you have a family in your life who have to fight the heartless system, listen to them, understand, stand by and appreciate the fight they go through every day, not because their precious child has additional needs, but because they are thrust into a system that makes is so much worse.
Even christians today, so middle class, appear to lack empathy toward those who have disability children because they too are part of the money hungry greed of this capitalist society and distance themselves from anyone suffering so that they can feel happy and good and comfortable. For shame the christians at least should be stepping up to support those in need but they have become hardened to the condition of others through pursuing money and success they themselves have forgotten their first love and the mandates to love your neighbour – they don’t even try. Many comfortable in society have not suffered anything at all and do not wish to care which is contrary to the Christian faith.
We the parents in the end must be the regulators of a profit seeking system, in disabilities the NDIS in Australia, since the government is not doing it and ignoring what is happening in disabilities. Always trying to say that the NDIS is not sustainable so they take help off people in future. They are the ones funding the providers regardless of how bad some of the providers of services are – not even deregistering the likes of Life without Barriers which has a history of abuse and deaths in their care even with foster parenting which they appear to be ramping up with TV ads lately after all the wrong they have done they are not punished penalised for - shame on the government. NADO even got a sensory award how sweet, after all they have done including letting my son be punched on his arm repeatedly and come home with deep bruising. Is that part of their sensory activities letting my son get punched? A picture appears on the internet with the CEO and others smiling for receiving the award. Never mind the abuse they allowed in their day program. They should be in prison – or fined at least - not getting awards!
Parents must make the providers accountable and pull them up on every ounce of deviancy they make with your child’s funding and every act of bullying and assaults or abuse – we must not let them get away with it at all. Make them accountable to you for any misdemeanours they make or their workers, no matter how little it seems. You are the employer of their services and you are giving them your hard fought for funding for your child – the least they can do is care properly and look after your child the way they claimed they would. Let us stand together to make the government do right by our children and make the NDIS also do the right thing. We are the ones who bring the change, do not give up.
Sign my petition for cctv cameras in disabilities so that we can catch the perpetrators of crimes against our children and innocent vulnerable persons and make the providers more accountable for their actions: change.org/disabilitycameras
All the best
Anndrea x

#disabilitylivesmatteroz