To think this would be discrimination?

[ikeakia]

My son is 10, in Year 5, has Down Syndrome and a Mitrofanoff catheter. He is also in a mainstream school. I’m fairly confident that this combination is very rare in a mainstream setting and as such there won’t be any protocol on how things should be done as there would be for more common issues like diabetes. He has started to self catheterise confidently and can manage the process from start to finish with no more intervention than a short reminder of how to open the packaging, but this will be picked up quickly and requires no physical contact.

Currently I’m going in to oversee this at three points throughout the day, and I was doing it for him until he could have the independence of doing it himself. School rightly said that staff would have to be trained by medical professionals to do it for him so I didn’t have to go in. This would be at a cost to the school.

However now he is self catheterising they are still looking up protocol with Health and Safety with regards to their position. Surely if he can demonstrate that he can be in charge of his own personal care then the school should support this to encourage his privacy and independence? And if a NT child with the same equipment would be allowed to self catheterise then not allowing him to despite his ability would be discrimation?

I’m honestly not trying to be difficult and obviously keeping him safe and healthy is the most important thing, but I see no point in paying for staff to be trained in something that they don’t need to do and taking away his independence and privacy when this is something he’ll be living with his whole life.

Any advice very welcome.

Yes it’s discrimination.

Oh it sounds very difficult for you right now. But what would happen if he struggled? There would be nothing the school could do except leave a wee boy exposed and vulnerable in a bathroom for ages until you could come. And that would be inappropriate. I used to assist a lad with his self-catheterisation when I worked in the community and had to do really extensive training for it. We existed on a team of 3 people covering the visits at lunch time and even that was a nightmare when someone when sick last minute.

BlueBirdGreenFence

What your describing isn’t at all like my son’s case. There are more options for him and he is able to self catheterise confidently. His surgeon has signed off on this. I’m not the only person available should he struggle either, but this wouldn’t be anticipated.

They need to protect themselves in case something goes wrong. This is the right thing to do. As you say, you can't compare his conditions with another child with a different condition. His down syndrome could impact on his ability to understand some elements of his care that a child without it wouldn't.

Saying that, of course he should be encourage to do things for himself and good on you for supporting him. It's about discussing with the school what would give them the reassurance that he is indeed able to do it without harming himself or others, and the steps to take to get to that point. They seem not to be there yet.

Should he struggle the protocol would be to call me, I live 5 mins away and don’t work. He wouldn’t be left exposed as he could simply go back to class to wait.

You’re right in the sense that it does impact his ability to understand on a deep level, however he does have a perfectly satisfactory understanding of his condition and the equipment which is why this was done for him in the first place. It was always my aim to do this so he could have the independence and privacy of not needed nappies changed by adults. I understand they have to cover themselves but it seems a waste of funding and a hit to his confidence to insist that staff are trained to do it despite it not being necessary. It would also mean using him as a training tool for staff to ‘practise’ on.

I think it is really great that the school is willing to spend it's limited budget to ensure your son is well looked after "just in case" and you should let them train the staff if that's what they want to do. So often, parents have the opposite problem that you have, no budget to train for someone who can't manage.

It does sound like your son is more than capable of dealing with things himself, which is brilliant, but on the even slim chance that one day something doesn't go quite to plan and he needs help, surely it is good to know that the school can help? Better to have too many trained than not enough.

It's good of you to be concerned they are "wasting" their money, but if they are more comfortable having trained staff, then let them. Also, you never know, another pupil may come along with a similar problem, and staff will already be trained to help them without delay, so it's all good, training is never wasted!

They haven’t agreed to fund it yet actually.

Even though he would have to suffer the indignity of being the practise doll despite his own capabilities?

The training would only cover how to actually catheterise, not troubleshooting, so should a problem occur staff still wouldn’t be trained in the management of it.

I would object purely on the basis that you don't want staff to 'use him as a training tool to practice on' as this would be an invasion of his privacy. It would also undermine his independence.

I can’t see how it’s discrimination when they are doing everything they feel is necessary to keep him in school and have his needs met. Their budget isn’t your concern, and if your son does require extra money spent on him then that’s what he deserves to happen. It is right that they look up H&S protocol so that they can be sure they are doing the right thing.

I would understand that if they would need to do it for him as it would make sense for them to build up that trust with him during training. It just seems like a hit to everything we’ve worked hard for for him to get to this point. We weren’t expected him to take to it so well so soon, especially after a disastrous recovery and he did really struggle at first. He’s the type though that thrives on his independence and isn’t to be underestimated. So this is a major breakthrough to be encouraged.

If they would allow a NT child of his age to self catheterise (which is the standard practise for this, that children do it themselves) but don’t allow him despite his capability to do so which would be confirmed by medical professionals.

They haven’t agreed to fund it yet actually. Oh, it's just that you said This would be at a cost to the school. in your OP??

Why would they use him to practice on? What makes you think they wouldn't include troubleshooting in the training, most training of other things does? If they are trained, they will be fully trained and won't be helping him unless he needs it. But in any case, you could speak to the school and explain your concerns and ask them not to intervene unless your son asks for help.

I don’t think it is discrimination, as from what I can tell in your OP the school is not looking to exclude him from anything. Rather, they want to make sure they have the skills and training to support him. You may live just down the road, but I can see they might think, what if your phone is on silent by accident one day; what if the networks are down; what if you are hit by a car and break your leg on the way back from the school run and are in hospital waiting for treatment, etc. I don’t think it’s unreasonable for them to want to feel they can do whatever might be needed to keep him comfortable should a situation arise where you are not able to get there quickly.

However I can see your points about not wanting him to be a practise doll, and the training not equipping them for troubleshooting anyway. Could you object on the basis of these very clear and practical concerns, rather than on the basis that it is discrimination (which I’m not sure I see evidence of, and which will in any case make them defensive and less likely to cooperate if from their point of view they are trying to do this to facilitate his participation in mainstream education, and they worry you are gearing up to sue them)?

So the School are spending time and money making sure they are doing their best by your Son and you are not happy ? I hate to swear but Fuck me , are you just looking for a reason to be outraged ?
Parents fought bloody hard for decades so that their children could go to mainstream school and you stick 2 fingers up and scream discrimination because the school want to get things right.

Because I’ve spoken to the nurse who would do the training to get information. That’s how I know costs, content etc.

Because there is no other way to practise. It would have to be using him in order for staff to be signed off on being ‘qualified’.

So essentially my son should put up with no privacy and someone shoving a tube in him that he can do himself? After staff have been trained to do it for absolutely no reason as if it all goes wrong it’s through to the hospital, they would be nothing they could do to fix things.

When another child without DS would be allowed to as it’s standard practise to teach them to do so.

Okay, I understand. But it wouldn't be forever, presumably they just have to prove they can help him if necessary. You could explain to your son that it is just for a few times, that he would be helping the staff train for other pupils who may come along with the same condition. You could be there at the same time if it helps. It wouldn't be a case of taking his independence away, it's just to ensure they get qualified. Once they are qualified that will be the end of their involvement unless required. This has to be a good thing surely?

Do you definitely know that if a NT child had to self catheterise they wouldn’t need training “just I case”? If so I agree this is unnecessary and discriminatory, particularly given it sounds like you or someone else could be at school within 15 mins to help. It would be appropriate for them to have a plan in place and for him to understand that (eg if there’s a problem, he needs to tell X, he can then go back to class and X must ring you, if they can’t get hold of you then ring Y, if cannot get hold of anyone provide nappy). It seems to me that this is a really important part of his education and not allowing him to do it himself is not providing him with appropriate education.

Can you ask the Downs Syndrome Association for advice?

I see your point, but I don’t agree. The aim was always to get him independently catheterising. Now he is I don’t see the need for training.

I'm aware of a case of a child, capable like your son, who unfortunately contracted an infection, which lingered and became quite bad. Parents are now sueing the school, and it's looking like the school are liable for not having staff trained in this procedure who may have been able to help avoid the child getting ill( how I don't know). I have no personal opinion but liability for the school may be a compelling issue in your son's case. His dignity is absolutely something that should be high on everyone's priority list, safety at the top. I know that it would certainly be preferable that my school have capable staff rather than having to rely on a parent, which is fraught with problems and not ideal where the other students are concerned.

I think awareness training would be beneficial over actual training if he can competently do it himself- so, having staff around to trouble shoot if anything goes wrong rather than intervene. At the least there needs to be a care plan in place that sets out risks and actions to take- your community Nursing team or school nurse should support. The contingency would be you being around to come in if needed as obviously you dint want him to retain urine for a long time. Does he have an ehcp?

Yes, he has an EHCP.

I have no issue with awareness training, this would be a good compromise, and wholeheartedly agree that the school are right to cover themselves. None of us want anything to go wrong.

I just have far more investment in his long term independence and rights to privacy.

They are currently relying on only me going in three times a day. All I do is watch him do it. I have no issue with this and am free to continue as long as necessary.

You do not have to consent to them practising on your son. Definitely not