What Being Discharged From Services Feels Like For A Special Needs Parent


I’m standing at a cliff edge crying out for help for my child. My voice echoes back to me in the chill and darkness of the valley ahead. I feel alone, cold, worried. Has anyone been here before? Can anyone help?


A tap on my shoulder from a speech therapist. A slither of hope in an otherwise wilderness. ‘Tell me about your child.’ So I do; readily, enthusiastically, because, after all, it’s my specialist subject. She huma and haws. Will she leave me back at that cliff edge again or bring me into safety. She offered me little really: Some visuals posted out to me to help me with my non verbal child. No working with the child. No courses available at present.


Discharged.


Like a knife wound to an already injured animal. Powerless to fight, alone, frightened. The word echoes on in the valley. Left alone again.


A pull on my clothing. Dare I turn around? Is it possible someone else may be there? Could this be the help I need so urgently, so desperately for my child? ‘Tell me about your child’. With tears running down my face, my heart beating fast, the fear evident with every word I utter: The paediatrician listens, refers on, moves on, one retires and we never see her again. It’s a fight for another appointment. Months past, years past until I realise what had happened:


Discharged.


Like they are washing their hands of my child. Nothing more they can do apparently. Hope disappeared. Back at the cliff point once again.


A whisper of my name. Hospital clinics this time: Neurology, medical paediatricians, ENT, eye clinics…in the end we’re just a number. In, out, maybe back again another time, maybe not. They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’ It’s another name for ‘do nothing and hope for the best.’ Some doctors we see more than once but not many. So much repeating our story, so many different faces. One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:


Discharged.


Like taking the trash out for the binmen because you have no more use for it. Like taking your old clothes to charity hoping someone else will one day see them and think they are of value. Either way you are no longer wanted. Off you go, but don’t hurry back.


Back at the cliff edge calling out for help again. Your own voice echoes back like it’s haunting you. Your child has aged, you are still pushing them in a wheelchair, progress was slow, your disabled child morphed slowly through the system to a disabled adult. Every time you passed go you collected another diagnosis.


Did anyone really help? Oh people referred on, people send out forms and ticked boxes but it never took long to be alone again. Services started, services ended. Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.


Reasons given range from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources. Rarely is it actually due to no loner needing the service.


Discharged.


Like a slap on the face, a stab to the heart, a sinking alone feeling that your child really doesn’t matter.


I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness. Oh there once were a few tugs, a few dull whispers, a few taps on my shoulders…but they are all long gone now.


I scream out: ‘Where is everyone? Please help me! Why did we get discharged?’


The echo comes back to me in the valley..’discharged


So we go it alone. Again.

When Special Needs Parents Are Told: ‘We don’t have money for that!’

Earlier this year my son became very ill. A routine MRI carried out under general anaesthetic found a large area of concern in the right frontal lobe of his brain. He underwent 6 hours of brain surgery where a segment of his brain was removed for biopsy and it took months for him to recover. Add in the fact he has severe learning difficulties, severe autism, epilepsy, a progressive genetic condition and he’s not able to speak and might you understand why I was extremely concerned about his return to school last week.

It wasn’t until two days before school was due to start back that I finally heard about his transport arrangements, and when I did I immediately felt sick. I had just spent three months caring for him since his operation, and over ten years caring for him before that ,and I knew instantly that the arrangements to get my child to school were unsafe and put him, and others, in danger. Yet despite numerous calls, emails and letters, plus the backing of medical professionals and social work later and I was faced with the decision to either put my son in that multi occupancy vehicle or keep him home. Taking him myself isn’t an option due to distance, the fact I have another child and the fact it is logistically impossible to be in two places at once.

Why were my son’s medical, development and mental health needs ignored in favour of the cheapest option? Because, as I was told numerous times when I requested single occupancy transport,: ‘We don’t have money for that!’

Now I get that my son is costly. In the last six months alone he has had thousands of pounds of medical treatment free on the NHS including scans, tests, appointments, consultations and brain surgery. He’s had a hospital stay with twenty four hour nursing staff. Everyday he has very expensive anticonvulsant medication just to keep his epilepsy under control. He was issued a wheelchair free of charge and he receives incontinence products delivered to the home at no cost. No-one ever once said they couldn’t treat his brain mass that was making him ill because ‘we don’t have the money for that!’ No-one has ever said he can’t see his neurologist or neurosurgeon or any other specialist due to cost.

Yet all his medical and communication needs can be ignored in favour of the cheapest bid when it comes to school transport?

Then there is trying to ensure he has an assistant with him at all times in the school day. Apparently my local authority don’t allocate named one on one staff preferring the cheaper option of general classroom assistants to help wherever the schools feel necessary. Why? Because it’s best for the children, ensures every child’s needs are met and gives them the best chance of success while being kept safe? No! Because it’s the cheaper option.

Despite being non verbal at ten my son hasn’t received any input from speech and language for years. He’s never been assessed or offered an alternative communication device that could help ease his frustrations. Why? Because of lack of money!

I list so many more times when I have been told that what my child needs in order to be safe, nurtured, included, and able to achieve isn’t possible…because ‘we don’t have her money for that!’

I haven’t ever met one parent of a special needs child (or children) who hasn’t been told at one point or other ‘we don’t have money for that’ wether it’s respite, educational support, sibling support, mental health support or adaptation to their house.

‘Lack of funds’ is the single most given reason why families with special needs children struggle. It’s what affects the mental health of parents (and children) the most. It’s what deprives millions of opportunities, vital support and independence.

Yes there isn’t an infinite amount of money in the world but should the most vulnerable in society be the ones to suffer?

When you tell me ‘we don’t have he money for that’ what you are really saying is my child doesn’t matter. His safety doesn’t matter;his welfare doesn’t matter; his life doesn’t matter. You are saying society doesn’t care.

Everyone has potential. Every life matters. Should there be a cost attached to vital support? What if that was your child put at risk?

What if someone said to you that you didn’t matter, you were not worth investing in, you should just accept what is given wether it meets your needs or not? Would you accept second best because someone said ‘we don’t have money for that’?

There are too many children with needs being put in school transport that is unsuitable, unsafe and transporting them for way over the government guidelines of time just because their parents are told there is no money for any other option.

There are too many children struggling in education, having to be withdrawn because of inadequate provision and placed in mainstream when it isn’t right all because of lack of funds.

There are too many families denied vital respite putting lives at risk all because of lack of money.

There are too many children and young people denied access to support such as speech and language, mental health workers or occupational health all because of cutbacks.

Our children matter. Our young people matter.

You can’t put a cost on the importance of a life.

My child deserves so much more than your glib and thoughtless comment of ‘we don’t have money for that!’

Your child deserves better too.