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.

[Edenviolet]

Diabetes is difficult to manage, especially in young children. Difficult but not impossible.

I can't believe that people who volunteer to work with children, presumably because they like them could then be so cruel and discriminate like this.

[jimmycrackcornbutidontcare]

Yep, this sort of thing could spell the end of organisations like the scouts, guides, BB, GB etc who rely on voluntary helpers. People won't want to put themselves at risk of official complaints and public accusations. Why would they?

[Edenviolet]

Nobody would be at risk of complaints and/or accusations if they behaved like decent human beings. Why would anyone be so unkind to leave a child out in this way to the point they would lie about a meeting being cancelled?

[itiswhatitiswhatitis]

Yes well done for missing the point Beccles

I am aware that people aren't falling over themselves to volunteer for this sort of stuff and if the section closes there is a chance no one else will step in, but IMO no Rainbows IS better than One that goes to such lengths as lying about a cancelled meet so a six year old child with a disability doesn't come.

[Groovee]

I'm a brownie leader. Before your ds joined my unit, I would have sat down and talked with you about her needs and how we would need to manage them, such as baking, what products could we use instead. If doing a party, I would ask advice on what she could eat and anything we would need to be careful with.

I would be happy to take your Ds on the sleepover and would have worked with you to learn how to do bloods etc.

I am horrified that such exclusion is taking place.and with how it is being handled. But would say to posters to not tar us all with the same brush. It has been brought up on the leaders facebook page and would be interested in the leaders side of the story. It could be nervousness due to a previous parent. It could be sheer ignorance.


I do hope that it can reach a satisfactory conclusion for your dd x

[Theboulderhascaughtupwithme]

OP I haven't read the hole thread but just wanted to say that I am really shocked to hear of your Daughters treatment. I'm involved in the Scouting movement and we would do all we could to accommodate a member with additional needs, even if it pushed us out of our comfort zone!

Your Daughter being a coeliac would not be a problem for us at all ( we have members with multiple food allergens).

I would go as far as to say that if we really really couldn't manage a particular child's needs even with adjustments/ extra training for a particular activity we probably wouldn't do it at all.

I am a HcP so personally would be willing to look after a child with type one diabetes, with proper discussion ad contingency from parents, and I am sure that other non HCP leaders would also be willing and able also. If all else failed we would invite the patent to be DBS checked so they could attend the sleepover/ camp of whatever!!

Hope you get an adequate resolution to your complaint.

[itiswhatitiswhatitis]

IME parents who have children with disabilities are more aware than anyone of necessary safety procedures and wouldn't dream of exposing their child to potential life threatening risk. If the OP believes that her daughter condition is manageable on a sleep over then I don't see any reason not to take that at face value.

[LeftyLoony]

Oh sorry. Forgot. Parents of children with additional needs and/or disabilities should put up and shut up so that those who have no idea can continue in their little deluded bubble that everything is fine, that we have adequate health and educational provision etc.

You see families like mine - some people want to pretend we don't exist, or if we do we are these beatific saints bring wonderfully supported.

It's only when we seek equality for our children and point out the issues there's a problem. We're 'witch hunting' or 'entitled'. They don't want to hear, they don't want to know or they actively envy or abuse specialist provision that is much needed and campaigned for for decades.

Quite often 'reasonable adjustment' causes minimal inconvenience to others.

I think the OP did well highlighting the issue on social media. She's tried the official channels and been roundly ignored. Good on her.

[Groovee]

Sorry my phone changed dd to ds

[Sleepytea]

That's a ridiculous thing to say. If people don't want to put themselves at risk of complaint then they shouldn't be discriminatory.
I suspect that the OP is cross about this because of the way it has been handled. If the leader had taken the parents to one side and explained that they didn't feel confident handling the diabetes overnight then this may have had a different outcome. The leaders have been a little bit sneaky by letting a 6 year old girl know there was a sleepover and expecting the parents to decline. If I was the mother of the child who was offered an invitation to the sleepover, I would think that the leaders were happy to handle the diabetes.

[SugarPlumTree]

I feel very bad saying this but I wouldn't feel confident taking responsibility for a 6 year old child with diabetes. I'm saying this as someone who has lived with a type 1 diabetic for 18 years. We've had some bad nights - nothing for years and years then unpredictably it goes pear shaped. I'm very competent at managing him ( he occasionally sleeps through hypo warning signs) but have had to call an ambulance a couple of times as I can't react properly if woken out of a deep sleep to deal with a fit and dangerously low blood sugar.

Therefore I do understand why a leader would be concerned, especially as the child concerned is very young ie. 6. I think the leader handled it very badly though, having said that I'm not impressed with this being all over FB, it has come up on my feed.

[Groovee]

Oh and everyone in scouting who keeps saying it wouldn't happen in scouts... My son's group was the only one who would take children with additional needs. The rest were so dismissive. It seems to be district wide from what I'm hearing. So there are problems in either organisation with disability discrimination. Very sad in this day and age

[LeftyLoony]

Again SugarPlum so parents should just put up and shut up in the face if discrimination?

It's not going to happen.

The parents have said they can be at hand. The leaders in this situation aren't even prepared to discuss what can be done to make it easier for everyone. With discussion and working together inclusion can happen.

[TwinkleChristmasStar]

SugarPlumTree as you probably know all children with Type 1 Diabetes are different. The chance of anyone having a bad night with DD is very very small, especially if we set things up correctly and work with the guiders. We haven't had any problems, to date, that are as dramatic as you outline.
We usually check DD before we go to bed (which we could do for the leaders) and then they would see her in the morning (and we could be back for that). If there was any sign of an issue at any point, then we would take DD home, and she would understand that. But we do not forsee any problems. DD can more or less care for herself apart from giving her insulin bolus. We can do this as well for the guiders, as she only needs insulin before eating.

WUME The venue is tiny. There are only small amount of beds for the children, and only one room for the leaders to sleep in. Apparently no one is allowed to sleep anywhere else in the building. We have offered to book into the hotel in the village, which is 5 mins away. We only live 13 mins away.

DesperatelySeekingSanity, Slubberdegullion, Secretsantacalling and everyone else who has been so supportive. Thank you all.

[Shamazeballs]

If you're in Milton Keynes DP says she can come to his beavers group!

[SugarPlumTree]

Yes I agree inclusion can happen and as I said, I think this has been handled very badly. I don't think people should shut up in the face of discrimination.

But as others have said, there is the bigger picture to consider ie. the fact that this is likely to put people off volunteering. I personally think it would have been more productive to contact local MP and Diabetes UK to contact the Guiding HQ and go from the angle of working out a set of guidelines , education and training that applies across the association. That way leaders and potential leaders will have proper training and something good will have come out of the situation.

[itiswhatitiswhatitis]

But that's the problem with that attitude sugarplumtree, everyone else is the bigger picture and people with disabilities are the smaller picture who just aren't as important.

I know that isn't really what your are trying to say but that is the message that comes across. Noone would allow a leader to exclude someone based on their colour and say "oh well we don't like racism but hey they are volunteers giving up their time for children so let's not ruin all the little white children's fun"

[unlucky83]

I'm involved at a certain level with Brownies ...my DDs have done rainbows and Guides...I know the leaders well.
They struggle to recruit leaders/helpers, leaders leave because they are drowning under paperwork...and it is a huge commitment. I can completely understand why people are saying they are volunteers, they didn't feel capable of taking responsibility for a serious ill child...and I really can't understand why they are getting grief for it...
I hope all those who are critising sign up tomorrow for GGUK -become at least weekly helpers ...unless of course you don't have time/have other commitments etc?
Because if that is the case I suggest you have a think - could I do any better? - and obviously you can't because you can't even commit to helping out once a week...
OP you are obviously a regular helper - otherwise you wouldn't surely have the front to complain....
In our area we don't have a county commissioner - we haven't for over a year - they can't find a replacement...
And as for inclusion and all children being able to do everything...that's life...you do what you can but at some point there has to be a limit...
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?
In this case the leaders are dealing with 20+, 5-7yr olds - maybe some of them away from their parents for the night for the first time...may have meltdowns etc ...I can completely understand why they wouldn't want the extra responsibility...especially if this was the first time most of them had been away.

[itiswhatitiswhatitis]

What a stupid example unlucky83! A parent deciding their child is too tired for the panto is nowhere near the same thing. If a parent chooses not to send an a child on an activity of course they don't expect other children not to go. Honestly what a ridiculous arguement.

Plus you should educate yourself more on what inclusion actually means as clearly you do not understand the concept.

[Waltons]

Twinkle, you may have missed my earlier post, but I would still like to find out what the "issues surrounding weekly meetings" were that you mentioned in your OP?

I am getting an impression that all has not been well for some while, and the sleepover is possibly the final issue in a series of events?

[unlucky83]

its so you are obviously a weekly helper for GGUK? Maybe a unit leader?

[Edenviolet]

It is perfectly possible to include a child with diabetes. My dds school manage it on a day to day basis and make reasonable adjustments even timing the class parties so as not to be right after lunch and when dd was back in range and rather than having a free for all on the party food when they saw that dd had just four carb counted items in the box I'd sent in they asked all the children to just take four things and spread the party food out over two days rather than just the one.

I can tell that sometimes the class teacher and TA are nervous but they ask me what to do and try their best. Never in a million years would they dream of not including dd. This is what the rainbows should be like in the OPs case. Anything other is wrong and discrimination.

If I was the OP I'd have done exactly what she has and hopefully by bringing this subject up rather than sweeping it under the carpet this will not happen to other children with diabetes.

[Oakmaiden]

Thing is, there is diabetes and there is diabetes. Some children have well controlled diabetes, which rarely causes a problem, and others have very fragile diabetes. The fact that the child has to use a pump and has already had hypos and hypers at hour long weekly meetings leads me to assume the child has very fragile diabetes. And yes, I would be concerned about taking such a child on a residential trip with me as a Rainbow.

For example: I worked with a boy who had fragile diabetes. He had one to one support in school, because his diabetes was so out of control his condition could change in a moment. He could not go to the toilet unaccompanied in case he had an unexpected hypo and lost consciousness. His entire life was hourly checks on his monitor, followed by proscribed food or enforced inactivity. It was really hard for him - hard for his parents, impossible to manage for a long period of time if you are also responsible for 4 other rainbows as well as organising activities/food etc.

So I can completely understand the leader's reluctance, and think that anyone who would take the child "without hesitation" should actually think a bit more carefully.

That said - there are alternatives to the child completely missing out. The most obvious alternative is to supply a one-to-one support for her. The only problem with this is it either requires another volunteer or the parent to attend. It looks like this was left too late to be organised properly, which is a shame - and perhaps ideally the event should be postponed until the OP can have a DBS carried out and can attend the residential too. I have to say, OP, I think that during the day attendance was a fair compromise, and I think your refusal to countenance it is unfortunate. We often have Brownies who only come during the day on residentials. They don't miss anything much - they get ready for bed with the other Brownies, and then the parents pick up just before the others go to bed and return them in time for breakfast.

All that said - it is outrageous that the leaders lied to GGHQ about cancelling the meeting.

I hope you don't mind, OP, I am forwarding your blog address to someone I know who may be able to help.

[TwinkleChristmasStar]

DD started Rainbows in January. The main leader was aware beforehand that DD had Type 1 Diabetes.

In spring DD was diagnosed with Coeliac Disease. The leaders were great at including her in baking etc.

The sleepover invitation came on October 1st. When we were told that DD could not attend, we sent a letter of complaint. This was upheld at the end of November. In this response, the weekly meetings had also been looked at, and various issues were highlighted. This was the first we knew about these e.g. there had been no risk assessment done or any contact with the SN advisor.

DD was still attending. She had two weeks off at the end of Nov and beginning of Dec. We phoned to check if things were in place for her to attend again on Dec 10th. We offered to stay / sit in the car outside the door, or in the pub across the road. The call came back that the meeting had been cancelled for all the girls due to a leader being sick. As you will have read, the meeting went ahead as usual but without DD.

All the proper complaint procedures have been followed.