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.

[Oakmaiden]

Waltons - I think the "issues surrounding weekly meetings" are the fact that GGHQ said that the unit had not carried out proper risk assessments for her daughter at normal meetings either.

[FATEdestiny]

"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?"

The fact that County, Region and even GGHQ are well informed about this but the situation is ongoing suggests that there is a lot more to this than just that written here.

[VotePedroPony]

unlucky I am a weekly helper (tawny owl) as are many others who have posted, and fully support the OP. If anything it makes me more supportive because I take pride in what I do at brownies and would hate to be associated with an organisation that condoned, even passively, disablism.

[itiswhatitiswhatitis]

unlucky83 I'm sorry but the "I'm a volunteer giving up my time" broken record just doesn't wash I'm afraid. You can keep repeating it over and over but it really isn't irrelevant here. Plus I'm not going to indulge you in a paiising contest over who does more than who for the community. I don't need to flash my volunteering credentials around in order to score points or make a valid argument. Noone is disputing the hard work and time volunteers give up.

There are many, many wonderful leaders working their arses off out there and managing to be inclusive so it IS possible. I don't care if an organisation is voluntary or profit making disability discrimination isn't ok.

[TwinkleChristmasStar]

Thank you Hedgehog

Oakmaiden all children here, who want it, have an insulin pump. It is no indicator of what their diabetes is like. All children are different.

My DD now has well controlled diabetes most of the time. She is usually beautifully in range thanks to the hard work we all put into caring for her. If we thought there would be any issue, we would not be sending her. But we see no reason why she would not be safe or fine to attend. She needs only a few minutes extra care than any other child, and most of that DD can do herself (or we have offered to be there during her waking hours to do her care).

[itiswhatitiswhatitis]

IS irrelevant not isn't relevant

[itiswhatitiswhatitis]

oh piss and shit messed up the correction too!

[MovingOnUpMovingOnOut]

Yy itis.

I'm a volunteer so it's ok to be racist - not ok.
I'm a volunteer so it's ok to be disablist - not ok.
I'm a volunteer so it's ok to rude - not ok.
I'm a volunteer so it's ok to be late/sloppy - not ok.

I am a volunteer and I do a bloody good job. The fact I am unpaid makes no difference at all.

[Tron123]

I hope you resolve the issue. I am not comfortable with the use of facebook and really would not be surprised if the leader stepped down which may lead to no group, I know that some on this thread believe that would be better than the current situation, i do not. I suggest that a facebook witch hunt may put many off from volunteering, yes in an ideal world all girls should be involved but .... Not all leaders are confident with these needs.

Many packs and units have waiting lists so it's hard for girls to join, some children don't have transport to get to a unit, others don't have parents who will take them, yes I know these aren't protected characteristics but there are many barriers to joining rainbows and brownies. With one more closing and such vilification of a guider who I am sure is an inherently good person, giving up time there will be less opportunities

[Edenviolet]

It may or may not put others off from volunteering. What it probably WILL do is prompt the right people to come forward and volunteer instead.

[LeftyLoony]

An inherently good person who is disablist?

[DoesntLeftoverTurkeySoupDragOn]

yes in an ideal world all girls should be involved but .... Not all leaders are confident with these needs.

What if a leader wasn't confident with the religious/cultural needs of a child?

[SugarPlumTree]

I'm sorry if it comes across that way. I have a child with SN , my DH is disbetic and I feel strongly about inclusion. I hear what you are saying about race but it isn't comparable. We are talking about death in the worse case scenario. It is extremely unlikely , goodness knows what the odds are, probably more chance of winning the lottery but it is an risk.

I'm saying it is not right for the leader to exclude her but I understand why she is nervous . She may perceive the risks to be higher than they are My point is to move this forward, education and clear guidelines are needed, to protect and include children and to protect Leaders and give them confidence that they are well supported. It is hugely important and vital the Girl Guide Association address this properly.

I do understand the parent's deep unhappiness at how this has been dealt with but I think it needs to move forward productively and personally feel the route being taken is misguided. You probably feel differently which is fair enough.

[Tron123]

Not sure scouting or guiding has a surplus of volunteers but maybe you are correct this will prompt people to volunteer, I do hope so.

[LeftyLoony]

I was referring to what Tron posted by the way.

It IS directly comparable with race when you have a parent offering safe solutions which enable inclusion and font even discuss it.

[MaudantWit]

What it probably WILL do is prompt the right people to come forward and volunteer instead.

Anyone wanting to volunteer for Girlguiding can sign up here

[Tron123]

We do not know the Guiders view so I would not like to make such a coment

[itiswhatitiswhatitis]

I do see where you are coming from sugarplum and I know that you weren't suggested that it is ok for the child to be excluded and you are right there are many ways in which this situation can be moved forward in a productive manner BUT it would appear the OP has tried to offer lots of compromises and it has been the rainbows leader/HQ who have refused to enter into a discussion about how to make this work.

I don't think any volunteer should be expected to manage a medical situation without proper training and proceedures in place but it is reasonable to expect when the OP's DD joined rainbows that the leader made sure she fully understood what was necessary to accomadate and to work towards putting things in place. Plus honesty goes a long way. Inviting a child on a sleep over thinking the invite would be declined was stupid she should have spoken to the OP straight away about her concerns.

It is never entirely the leaders responsibilty to make sure inclusion happens parents have a responsibility to reach compromises and provide support too which it appears the OP was more than happy to do here.

[Sleepytea]

I have a question for the people who think it's ok for the little girl to be excluded because the leaders weren't comfortable with her diabetes. Imagine your own healthy child... Imagine she gets a cold, a viral infection that she seems unable to recover from. You take her to the GP and discover that somehow the virus has done something to her pancreas and she is no longer able to produce insulin properly. You need to help her do this by testing her glucose levels and giving injections. Now think of all the activities you do ranging from school to Brownies to play dates to swimming lessons. Should your child now be excluded from all these activities. For how long should she be excluded, until she' 7, until she's 10, 13, 18 etc... I know people who have to fight to get school staff to help their child. These children have enough to deal with without us grown ups being scared of them and their malfunctioning pancreas.

[unlucky83]

vote I understand where you are coming from...but I can also understand someone not wanting to take on the responsibility for this one night ...as fate said I suspect there is more going on here than meets the eye...and as oaks said hypos at hour long meetings would have me worried too - it does sound like one to one care would be needed...and maybe for whatever reason it wouldn't be possible for this event, at this time. At the end of the day you have to stay within your insurance requirements...
Its it isn't a competition - 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...and I have first hand knowledge of how hard it is for them to keep the units going and how many keep doing it because they can't get a replacement. I am pretty sure they aren't deliberately excluding this child to be mean or disablist or whatever ...they are more than likely doing the best they can with the resources they have ...probably still working their arses off...
All the points moving made about being rude, racist, late etc are irrelevant -because they don't involve extra responsibility -this does -and as someone else said this could lead to a child's death - which no doubt would then be on facebook as why did the leaders allow this child to die?
Maybe the leaders need more training etc...
But a lot of people on this thread believe that no rainbows would be better...fine...or that the right people are miraculously going to step up and take on a huge commitment - maybe they will and that will be fantastic - but I doubt it...

[trice]

I used to run a rainbows unit. We had a girl who had diabetes, a girl with epilepsy and multiple children with food allergies over the years. I always did written risk assessments and we were encouraged by the organisation to be fully inclusive. It is daunting being responsible for children who have life threatening disabilities when you only see them for an hour and a half once a week. It does take a lot of extra work and planning to make things both safe and challenging for everyone.

I am proud that we managed on the whole - but I still have flashbacks to when I had to call the ambulance!

Girlguiding as I know it is very inclusive and I and my fellow leaders go all out to make sure all our members can join in the fun. I'm sorry you have not had a good experience op. I hope your complaint gets resolved.

[SugarPlumTree]

Yes I totally agree with you on all those points Itiswhatitis. If the OP would like to do a petition or something asking the GGHQ to provide training, support and guidelines for leaders to handle medical conditions such as diabetes and asthma (sure there are more but too tired to think of them), I would be extremely happy to sign it.

[SunnaClausIsComingToTown]

So you were really happy with how it was going until the sleepover? And then you sent off a complaint to HQ. Did you talk to the leader about your concerns before complaining about her?

[MissPenelopeLumawoo2]

I know it is not quite the same, but my DD suffers from epilepsy. In the summer she went on brownie camp, the leaders did not bat an eyelid, they had someone give her medication, and there was someone on stand by to listen out in case she had a seizure in the night. There was never any suggestion of her not attending.

If the leaders had told us they were uncomfortable with the medication side, I would have gone back to the venue at the appropriate time to administer it myself, as I have done at other events she has attended. No one has ever said 'No'.

I think the leaders are behaving terribly in this instance, and I would be fighting this too if it were my DD. As if life with a health condition is not bad enough for a child (and their family) . YANBU OP, I don't do FB but I hope you will update us if you hear anything from Girl Guiding.

[Ionacat]

Completely agree that this is unacceptable. The OP's DD should not be discriminated against, the leaders should have the access to the proper training and should have been open and honest with the parents if they felt unable to cope and not have just assumed that an invitation would be turned down, and telling them that the meeting had been cancelled when it hadn't, the mind boggles and not getting back to complaints.
However, getting this over social media is not going to help the situation. Facebook, blog post, this thread, it is like a witch hunt and from the OP's post it sounds like she still wants her DD in that unit. I've already pretty much worked out where this is from the net and I live in a different part of the country. I think if I was that unit leader, faced with this, I would just give up as it wouldn't be worth it. This needs resolving in the best way for the unit and the OP and this is unlikely to happen via social media. If you haven't got a response from HQ, I would be writing to the trustees.