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.

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

  1. I thought education here in the U.S. was bad, especially for special needs but I’m learning that it’s just as bad if not worse in UK. Education should be a top priority. Education for ALL children, whatever their needs are.
    I’m so sorry your family is having to deal with all of this. I’m happy to read that your son is doing well enough to go back to school. You’ve been in my thoughts.

    Sending virtual hugs💌

    Liked by 1 person

  2. I’ve missed your posts over the summer.
    Yet again, very true. I braced for this argument when transport come back to me next week.
    The truth is after 10 years of this fight I’m tired and I don’t want to have to accept whatever they give me because I have no fight left, I can feel myself waning as time passes and it’s getting harder and harder to gain another thick skin. I sometimes feel like I’m the only person who has to battle these issues, your posts make me feel less alone

    Liked by 1 person

  3. This is so sad that money dictates what a child can or can’t get. Money should not come before a childs’ needs or anyones’ needs for that matter.

    I hope Izac is doing better now than what he was before his operation. Sending hugs as always and i hope you are all doing as well as you can be xxx

    Liked by 1 person

  4. I am glad to hear that your son is well enough to return to school. It is so infuriating that parents have to fight so hard to get needed services for their children. Like Ben’s grandma, I feel like it sounds even more challenging in the UK than in the U.S. Here it varies by school district and people I know have moved in order to enroll their child in a school that is more open to providing appropriate services. Welcome back but sorry for your worries and frustration with the schools.

    Liked by 1 person

  5. The option some parents had was to institutionalise their child or send them to a very specialized school but that option is taken away. We are being told it is for disabled rights and the good of the child but the truth behind mandatory deinstitutionalization and forced maitreaming is to save money. Lets us not forget about the British Empire and its controlled opposition American rival wasting billions on useless wars while seriously sick and disabled children suffer from supposed lack of funding and for treatment and education needs they cannot get or in your case appropriote transportation. Where is the fraud Tommy Robinson? Does he care abut British children with disabilities or some grossly exaggerated story of non disabled British girls and their suppsoed forced prostitution

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  6. I don’t know what the disability education laws are on your side of the pond. I do know that in the US, the IDEA makes it not legal for a school to deny a child services based on lack of funds – eg, the principal or sped cadre of experts can’t say “We won’t give you that because we don’t have the money”. Although they may very well not have they money, that is not supposed to be a reason to not provide services.

    Now, does that mean families get all the appropriate services over here?

    Oh, no no no.

    There are so many ways in which school districts try to weasel out of providing services, including the Least Restrictive Environment law, downplaying the child’s needs, blaming the bussing assignment office, et cetera.

    Then parents of non-disabled kids are all like, “But you can sue, right?”

    This might not be the case in every US major metro area but the Chicago Public Schools are notorious for playing chicken with parents in the hopes that families will get just so ground down they give up. If we do win, it’s at a cost.

    I am constantly galled at how the US has tons of resources to piss away on war, excess consumption, and corporate welfare, but taking care of society’s most vulnerable human beings? Oh, that’s a waste of money.

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