Rainbows (Girl Guides) - all my daughter wants for Christmas is to be included in your organisation.

[TwinkleChristmasStar]

Hi, my 6 year old daughter has been attending her local Rainbows unit since January. She has Type 1 Diabetes and Coeliac Disease.

In October she was invited to the ultimate event for a 'grown up' Rainbow - the Sleepover! Of course she wanted to go. We, and her medical team saw no reason why she could not attend. The venue is just 13 minutes away from home (the usual Rainbows meeting place is 9 minutes away).

The response from the Guiders when we said she would like to attend, was that DD was a "horrific responsibility," and that we had been expected to decline the invitation.

We are now nearly 3 months into the complaints procedure. We have offered numerous ways we can help facilitate our daughter being included, including us staying close by (there is no room for one of us to stay on site), doing her medication, providing food, being on call etc.

Our first complaint got upheld, however, we were told that DD still could not go on the sleepover :(

The complaint report also revealed other failures such as no risk assessments for weekly meetings.
We have made subsequent formal complaints of a Failure to Make Reasonable Adjustments, and of Disability Discrimination. These to date have been ignored.

At no point has anyone asked what our child's needs actually are.

Since all the complaints went in, there has been a further incident. We phoned to check that it would be ok for DD to attend the last meeting before Christmas, given the issues surrounding weekly meetings. We offered to stay either on site or close by. We were told by Girl Guide HQ that the meeting was cancelled due to a leader being ill. The story did not add up. I was passing the meeting hall on the way home, and so I pulled in. Within a few minutes, some leaders arrived, followed by the Rainbows, and then more leaders. It appears that DD was purposely excluded.

There is more detail about all of this here on my Blog.

We realise that as a whole Girl Guides can be inclusive, however after nearly three months, nothing has been resolved, and our complaints remain unanswered.

Our daughter is incredibly brave. She does not deserve to be treated like this. She just wants to be with her friends at Rainbows. We also hope that we can prevent this happening to any other child in future.

Just excuses why you won't volunteer.

While it may not be OK or legal to exclude additional needs children from voluntary organisations, what will happen is that people won't volunteer if they feel that they are being asked to cope with too many additional risks and complications, and voluntary organisations will fold...

It is irrelevant what might happen as discrimination is illegal and morally wrong.

Tbh, it would be preferable for a unit to fold than to carry in teaching the children they are happy to include that discrimination is ok, that refusing to talk trough a potential issue and reach a compromise is ok, that lying for the express purpose of excluding others is ok.

Would anyone on this thread really want their child to learn that all of the above is ok? I know I certainly wouldn't.

Like it or not life is lived on social media. Whenever anything goes wrong we get the fastest (sometimes only) responses via social media. Whilst I appreciate that it is difficult having this discussed online for the leader I understand Twinkles frustration. Or are we only allowed to complain about people being paid?

In one of my voluntary roles I organise events for families. I (and my team) make reasonable adjustment according to the needs of those attending, for example we changed the venue to meet the needs of children attending, make sure there is suitable food and drinks etc. I discuss needs with people and work hard to ensure everyone is included.

WUME, the OP helps out with these events, is that OK with you? She gives as much time as she is able to. There are many complex reasons that Twinkle can't commit to a regular role with rainbows.

Both DCs had chronic asthma that could get very bad very quickly.

I decided that it was not fair to expect their teachers to have to be aware of their needs when they had so many other children to watch over, so I took the decision myself that they would not attend school overnight trips until they were old enough to manage their asthma themselves.

I feel so sorry for the leader. She got it wrong once and now there's a lynch mob after her.

How many leaders of voluntary groups are reading this and thinking about throwing in the towel in case they find themselves plastered all over social media if they make one mistake? I know I am.

It's not one mistake. One mistake would be the original assumption that the OP would decline.

Not then refusing to talk about it , not drawing up risk assessment, deliberately lying and excluding the child from a regular meeting , and refusing to accept any support or compromise (or even think about it) allowing the child to attend. That's a whole lot more than one mistake.

OP you are obviously a regular helper - otherwise you wouldn't surely have the front to complain....

Really? So op can't complain about her dd being excluded (lied to about weekly meeting, 'assumed' to have not accepted invite) or discriminated against, unless she gives her time to the organisation? What a pile of bull!

eg one child didn't go to the panto with the brownies because their parent thought it might be too much for them at a busy time of year ...so the rest of the brownies shouldn't go- really? No, that isn't what is being suggested, in your scenario, THE PARENT decided it would be too much. This one, the op has been lied to in a bid to have her daughter not attend. That is very different & you cannot compare the two.

I can completely understand why they wouldn't want the extra responsibility. Then they should spoken to the op, not expect her to 'decline' the invite, when op didn't even know there was an issue. Expecting op to decline shows a lack of self awareness & courage to stand up & say 'I don't think we can manage your dd's medicals needs overnight'. To be fair, I wouldn't want such spineless people looking after my dd. If the leader cannot be honest & vocal about her limitations, she shouldn't be responsible for 20+ children of any age!

but I do know I would be embarrassed to critise the leaders for doing the best they could - when I know I couldn't do any better Except they could have done a lot better...just by talking to op honestly!

Did you talk to the leader about your concerns before complaining about her? If you read, the op offered to help manage it both at meetings & the sleepover. She came up with a compromise, only to be told no.

However in this case the op is not dbs checked so cant stay over.
-An overnight venue with beds has insurance about the number of heads that can sleep in it.... Maybe mum staying over would have broken insurance
-Adults that attends an overnight need to have a CRB, no negotiation on this That's why they offered to stay in the same village, in a hotel not 5mins away. That is how op tried to compromise. And still they said her daughter couldn't attend.

I would not be comfortable if I was your daughters' leader, I really wouldn't. Then why can they not just say that, instead of expecting the op to decline the invite?

Just excuses why you won't volunteer. How rude are you? She has another disabled daughter who requires a lot of care & works full time. She said it just isn't possible to volunteer at the moment. Volunteering isn't a prerequisite to be able to complain about discrimination against your child.

what will happen is that people won't volunteer if they feel that they are being asked to cope with too many additional risks and complications, and voluntary organisations will fold... So we let people discriminate, just to save that service for others? No, I don't think life works that way!

Would anyone on this thread really want their child to learn that all of the above is ok? I know I certainly wouldn't. NO, & I certainly wouldn't want my children around people/being taught/looked after by people who thought that way either!

I decided that it was not fair to expect their teachers to have to be aware of their needs when they had so many other children to watch over So I assume you home ed them, then?

How many leaders of voluntary groups are reading this and thinking about throwing in the towel in case they find themselves plastered all over social media if they make one mistake? I know I am.

Nope, didn't even cross my mind..

This is a horrible situation and one that must be very distressing, particularly for your little girl.

Is it possible that there is some kind of stand-off between the local volunteer team and the central organisation i.e. volunteers saying that they need proper guidance, training and policies to undertake looking after your daughter safely and with confidence, and the central organisation either refusing to do that or just dragging it's feet. That could explain why you are getting such conflicting messages i.e. complaint upheld but no suggestions for adjustments/change in behaviour. They're in a lock jam themselves with no-one prepared to take responsibility along the hierarchy.

I say this because I was working in an organisation when the legislation came and a colleague asked our (new) manager for reasonable adjustments to be made due to a mental health condition. Our manager was very willing to do this, but the colleague refused to indicate what adjustments she needed, and the HR department wouldn't provide any guidance either due to fear of being wrong in the area of new legislation. (There was a history of dispute between HR and the colleague and neither of them was prepared to open discussions).

Our manager ended up going to a mental health charity for advice, thank god she had enough initiative to do that, it got some concrete proposals on the table and a conversation started. She was put in a very awkward position. I realise that this is very different from your situation as you have proposed reasonable adjustments and to assist in making them, but I mention it to highlight the possibility that it is part of a bigger internal conflict. Those can take a long time to sort out. Or it could just be someone very unreasonable and passive aggressive at the local group of course, in which case it could be quite simply dealt with once someone actually can be bothered to do that.

To be honest, I think you need to pursue this complaint to a successful conclusion and find a new, more inclusive group for your daughter.

I think you need to pursue the complaint so that either bad individual or institutional behaviour is highlighted and corrected, both on point of principle and for others in a similar situation to yourself as well as showing your daughter that you don't have to accept bad treatment/exclusion, you can stand up to it. But I'm not sure that staying part of this group will ever be a comfortable situation for your daughter, once she has been treated this way, plus it could well be very stressful for you, as you may (very reasonably imo) anticipating future struggles with them. It sounds like you have enough on your plate day to day generally speaking. You don't want her to be in an environment where you have to battle everything for her, but somewhere she is accepted and included as a matter of course.

So good luck and take care

We might live in a society where social media is common, however using fb vilifying the guider is unpleasant, given the fact that this issue has been made formal the guider would I think be well within her rights to take action. Rights go both ways.

So I assume you home ed them, then?

Daft question. At school they were 10 minutes away on school trips they were 2 hours away.

How many leaders of voluntary groups are reading this and thinking about throwing in the towel in case they find themselves plastered all over social media if they make one mistake? I know I am.

Nor me. But that may be because the reason I volunteer is to help others and that includes not discriminating or behaving in such a way as to deliberately make anybody's life harder or more unpleasant.

I don't know why this is so hard for some people to grasp? differentname has outlined very well some of the silly arguments posted on this thread. Put simply: discrimination is wrong.

Tron would you say that about anyone complaining about being poorly treated (ie consumer issues) or indeed discrimination like the woman breastfeeding at Claridges or is it just parents with children with additional needs that have to meekly put up and shut up?

I did notice by the way that NOBODY answered the question that if it was their child being discriminated against would they defend them.

I don't know why us parents of kids with additional needs and disabilities are expected to behave differently from everyone else. Neither we or our children are 'other'.

Sunna that's a full further five minutes away than the OP offered to be from the sleepover. By your reasoning the school should have excluded your kids.

I have said several times that I think in this case there was not enough effort made to make reasonable adjustments, Lefty. I was addressing the wider issue.

What I think is wrong is it being taken to social media. Behind all this is a woman who made a mistake. No one died. She doesn't deserve the abuse she's getting.

Appalling OP, especially the lying to you about the meeting being cancelled. That's AWFUL!

As you were offering to stay 4 mins away & presumably were contactable by phone I'm not sure what the issue was. I presume you could have been called in to do the insulin pump adding/subtracting thingy (which does always look complicated to me - and if I had to do it as a one off I'd want to talk it through with someone). I wouldn't worry about managing a hypo - and they must be able to do that snyway during day meetings. But a pump surely could be managed by calling you in at certain times to do the calculations & work out the insulin if they were worried about doing it themselves.

I'd look for a different group. You need people who 'get it'. If they don't already they never will.

The volunteer stuff is irrelevant. They've had months to find a solution. And if you volunteer that doesn't mean you're free to discriminate & lie about meetings.

Tron has said further up the thread that she feels a pragmatic solution is the way forward. There are some great Leaders on this thread who will do everything that needs to be done to accommodate a child with additional needs, which is how it should be. But not everyone is like this for a variety of reasons which is why GGHQ having a clear set of guidelines, providing proper support for these situations and the necessary training is the way forward. Volunteers have varying levels of knowledge and experience so if proper procedures and support existed they can feel confident.

For example GGHQ could arrange a local liason person from a Hospital to talk to Leaders and advise them. My friend is a lead Diabetic nurse I know she would happily take on this role. Things clearly need to be done as what has happened is very wrong and GGHQ are making things worse by not responding.

Loony I answered your question above. If it was my child bring discriminated against, yes I would defend them as I outlined yesterday ie. having not had an answer from GGHQ I would have approached my MP and Diabetes UK and asked them to contact GGHQ with a view to providing support snd guidelines to all leaders. As I have said my child has additional needs and has needed additional support throughout her school life and I have always ensured she has had it. I fully understand why the OP is so upset, I don't think she should shut up but have found in life when dealing with solutions for my DD and for my Mother who has Dementia which causes more issues than I could have possibly imagined, that being very clear about what you are trying to achieve then finding the resources to bring about change is the way forward. Yes use social media but in a targeted way with clear outcomes explicitly explained.

Again though does that mean that anyone with a grievance against an organisation should keep quiet? You have seen some of the threads on here I'm sure regarding some retailers. Or issues with breastfeeding in certain establishments. Should they keep quiet too? Or should it just be parents of disabled children that put up and shut up?

If you volunteer to be a leader you volunteer to lead the 'easy' ones and the 'hard' ones. You don't get to pick & choose who is in your group. If you volunteer you agree to abide by any laws including the Equality Act.

I would have thought the leaders would have got a buzz out of being able to help a child who has to go through daily difficulties to help her have a 'normal' experience of what many little girls would be so excited by. In my time volunteering with disabled children I found the ones who were most rewarding were those who hadn't experienced 'normal' events before and were overjoyed to be included. Like the 16 year old who had never been in the sea. Yes it was a lot of effort to get her wheelchair down to the beach then carry her to the sea but boy was her face worth it! Should we not have bothered because it was too 'hard' and let her watch the walking ones playing in the sea? That's effectively what these leaders would have been doing. Letting a little girl watch her friends go off and have fun because she's too 'hard' to cater for.

This little girl has already had to experience difficulties many of us will never have to contemplate. It's sad that a supposedly Christian based organisation hasn't thought to go out of its way to give her a break. Jesus didn't hang around with the 'easy' members of society. He cured lepers and others with disabilities. I'm not expecting the leaders to cure her! Just to understand that she deserves to be a little girl just like her friends.

I do have a chuckle at this outrage over social media use somehow being beyond the pale while posting on Mumsnet about it.

I would consider doing the same if someone behaved so abominably towards my child too.

No they shouldn't keep quiet. This absolutely 100% needs addressing as it is an extremely important issue. We know what has happened to this little girl but there maybe other cases of children with diabetes, asthma, epilepsy and other conditions I can't quite think of at the moment who have also been excluded.

This is wrong and shouldn't be hidden . But do it in a way where it can move forward with solutions that are clear and can be implemented to stop this so the situation moves forward, not just for the OP ' S DD but for all children witb additional needs in the future. I suggest the OP contacts Diabetes UK to take this up for her.

While I have some sympathy for the leaders feeling unequal to the responsibility, I do think they handled it badly from the get-go. The moment they realised they were planning a trip which (they thought) one of their members would be excluded from they needed to either talk to Op or escalate higher up the organisation to find out where they stood and whether any help might be available. If that wasn't an option then what's the point of Girl Guiding as a national organisation, quite frankly?
The secret meeting is appalling. I can understand the leaders being massively uncomfortable and upset and not wanting to be in the same room as op, but that, if it really happened as described, crosses a line.