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.

Would out find it acceptable to be told your DD could no longer attend, Tron? For no good reason? And then told to suck it up for the benefit of the others?

I am an ex Brownie Leader, as I understand it, complaints about a guider or unit have to be referred to the group's District Commissioner then to the Division Comissioner, and the County Commissioner before the matter goes to HQ. It wouldn't surprise me if your original and subsequent complaints aren't bouncing about somewhere between these people. You are quite right that your daughter should be included and that the guiding team at the Rainbow Unit should be looking for a way to fully involve your daughter.

As an aside when I ran a pack, I had a severely disabled girl as a Brownie. She was unable to stay away overnight as she had complex medical needs. During her time as a Brownie we didn't do any sleepovers or pack holidays as she loved Brownies and would have hated not being able to take part. That was my way of solving the problem of making my pack fully inclusive.

I hope the issue is resolved and a unit is found or a compromised reached.

However the Guiders are volunteers, anyone can volunteer and become involved as a guider. It is very easy for a volunteer to walk away no notice needed it's not a job, if this happens there will be no rainbows at that unit, it personally do not think that is desirable outcome.

I'm a cubs leader and would also do whatever possible to allow your daughter to join in. My 2 children (in beavers and cubs) are coeliac also and whole camps have been gluten free to allow them to take part.
Do look into beavers if you get no luck with rainbows, we have a fair few girls now and they love it :-)

If the girls and leaders have colluded to knowingly exclude a child on account of their disability then they deserve to be shutdown. Not acceptable behaviour from anyone,regardless of whether they are volunteers or not

I'm a scout leader and we would love to have your daughter in our troop and I'm quite horrified by the way your daughter has been treated. While scouts and girl guides are separate organisations they should both be inclusive at all times. We had until last year a scout with type one diabetes and it really wasn't a problem at all, currently we have (off the top of my head) a severe peanut allergy, a latex allergy and one autistic boy, but again it's not a problem we just work with the parents and decide how what we can do to make sure they are included in everything that we offer.

Obviously, I'm talking about scouts so the children are able to self managed to a certain extent with our guidance but all of these kids went through our beavers and cubs without any problems so I really can't see what the guide leaders problem is. I will check how the diabetes was dealt with at beavers but I suspect that a parent was invited to join the colony on camp so they were there to administer medication which is an added bonus for the leaders as it would mean they had an extra parent helper which is always brilliant.

My first suggestion would be to find another group that is more inclusive, but I understand that your daughter will want to attend the same group as her friends and she shouldn't be penalised because of this leader. So I'd get in touch with GGHQ and explain the problems you are having and ask them to work with you to find a resolution. I really can't believe that there would not be space for another adult on a sleepover and so long as you were happy to be crb checked then I can't see why you or your husband couldn't attend, we have plenty of parent helpers who are Crb checked and it works really well as we are quite over stretched in our unit.

To those who are saying that leaders and volunteers and that this may cause the unit to close, I think you have massively missed the point. Guiding need to me inclusive to all and leaders need to understand this, they can't just pick and choose which children they allow in, where would you draw the line anyway? Do you take nut allergies but not diabetics? Or do you only allow nut allergies if they aren't severe? Etc etc etc. as for this causing the troop to close, quite frankly if that is the attitude of the leaders I dread to think who else may be being excluded and suspect that the unit should be closed as they can't stick to the guiding basics.

The Equality Act 2010 covers associations or clubs with a group of 25 or more members. A volunteer is still bound by the Equality Act. This or this should explain the legal responsibilities.

What Sunnymeg has described is absolutely what should have happened. If all the children could not be accommodated, then the event should not have been planned.

We offered everything we could. Staying nearby (staying on site was not possible but we did explore it), being on call, providing food, being there during the day, offering training and more.

The leaders have cared for her over the last 11 months including treating hypos and caring for her when hyper.

Our daughter has a sensor which continuously tracks her sugar levels. She can do her own blood tests and she can treat hypos. She is too young to give her own insulin, but we have offered to do this for the leaders.

We have a younger child who is disabled and requires more care, thus volunteering, whilst we are also working, is not practical at this point in time.

Just to add, the initial complaint was upheld by the District Commissioner.
However DD was still not allowed to attend the sleepover.

No reasonable adjustments were suggested thus the Equality Advisory Support Service (who have been brilliant) told us to submit a formal complaint of "A Failure to make Reasonable Adjustments".

There was no response to this.

We were then told to submit a "Formal Complaint of Disability Discrimination".

This too has had no response.

GGHQ, have been cc-ed into everything. We have phoned periodically to check things. For example we were told that GG insurance didn't cover DD at meetings. We understand that it does cover all girls for any activity.

After the unit meeting was held without DD, we asked GGHQ to add this to our complaints.

We have been patient up until now. We have been told we would get responses, but to date there has been nothing since the initial complaint was upheld.

Disgusting. I would suggest the scouts. My children have had far more fun with the scouts than guides.

I'm afraid I'm with Tron.

What has happened is awful and needs to be addressed but you need to recognise that as a result you may cause the unit to close completely.

Is that really in the greater good?

I think if you look around you WILL find a unit that can accommodate your daughter. It is all well and good spouting about the legal requirements but rightly or wrongly complying with them is obviously hard for this leader and I don't think forcing her is going to achieve the outcome you want for your child and may have a detrimental outcome for the rest of the girls in the unit.

Personally I'm a little surprised that some posters think that because some activities cannot be made inclusive no one should be able to do them cf. the very disabled child above who prevented an entire unit having a residential.

I don't have a disabled child but from an able bodied perspective that seems like a lot of children lost out because of one child. I'm afraid I don't think that seems fair.

Aren't there just sometimes in life where you have to accept that you can't do things…

I don't know the specifics of your needs, but as a volunteer with Girlguiding I would be trying my hardest to include your daughter on our trips.

I suppose I'm just hoping you don't judge Girlguiding on the behaviour of one units' leaders!

I am a Cub leader, and I would be horrified if the Scout Association failed to respond to any complaint in this way.

We go to the utmost lengths to accommodate children with special needs of all types. The gluten-free diet is a complete non-issue. We have children with every known variant of dietary requirements pass through our hands.

Yes, the diabetes is a bit more scary, but if your DD was in my group I would have taken all the time needed to understand it and the management of it. I may be a volunteer, but that doesn't mean I can use that status as a cop out. I've taken the job on, no matter what it entails and I either do it to the best of my ability or I get out.

What I can't support though is the idea that overnight events should be suspended completely for the duration of your DD's time with the group. Nights away, at least in Scouting, are central to what we do. In fact, if we don't offer a minimum number of them, we are deemed to be "failing".

The sleepover should have been arranged for a venue where you could attend to take care of your DD's needs if the leaders weren't comfortable doing so.

That is the inclusive solution, not cancelling all nights away because one child can't attend easily.

I'm a Guiding Division Commissioner, and I deal with complaints, though not had one as bad as this.

There is obviously some massive breakdown in communication somewhere here.

There are several levels of Sen advisors and county/division commisioners between the unit leaders and CHQ, the complaint will be bouncing around somewhere.

There has to be more to this, I've had several coeliac guides over the years and it's never been an issue, and I've had a diabetic with a pump as well, some accommodations have to be made but it's all doable.
There is some big part of the story not being told here imo

One thing that hasn't been responded to is the OP's suggestion that a parent sleep over.

Girlguiding regulations clearly state that all adults sleeping at a residential event must have undergone Girlguiding recruitment and DBS checks. There is no way that this would have been practical for the timings this event however, it is an option for the future.

As someone who has worked with parents and Brownies to ease into nights away, I also think that the OP should have accepted the compromise of daily visits to ease the clearly nervous unit leaders and her daughter into the idea. Parents and leaders need to work together and this means that parents need to listen to, and appreciate the other side too. While you know and understand your daughter's needs, it is a scary and very different thing to know you have to cope with an unfamiliar emergency at 3 in the morning.

Out of four sleepovers and pack holidays I've run this year, three have involved at least 1-2 day visitors for various reasons.

If I was the leader, I would feel that the postings all over Facebook and internet forums clearly indicated that the trust was gone and that the parents had no regard for my privacy. I would also be considering my role on guiding full stop. If I continued to run the unit, I would: seek support from the local special needs adviser, offer to find another unit for the child if one is available and as well as cancelling the sleepover, l would not run another until she had left.

Given the lack of leaders to run rainbows across the country, the question to ask is whether, aside from the sleepover issue, the OP had felt that her daughter had been previously excluded. If not, then I would be disappointed that there had been no attempt to compromise on both sides.

lurkerspeaks you clearly have a bee in your bonnet about this issue and you are not coming across well.
It is no concern of the OP if the troop is forced to close; that is purely on the Guide Association. Do not carry on trying to make her feel guilty.

Being voluntary is not a good enough reason to break the law.

Imagine how they would treat a child who is dependent on a wheelchair or one with severe learning disabilities if they can behave like this with the OP's daughter.

I can believe this - people are scared of diabetes and scared of what they dont understand. My DS's best friend had similar issues at school and with friends - he could only ever have a sleepover at ours, because I wasn't too scared to take him - I would be on the phone to his mum regularly through the evening with sugar levels, mind! But other friends wouldnt have him over because of the responsibility. School residential trips were a nightmare, a parent would have to go with him.

OP, look around for a different group, or look into Scouts/cubs/beavers - in our group we have a doctor, a paramedic and a nurse within the leaders, and in your situation, a call would go out to these three leaders to see if any of them could cover the sleepover.

If the leader doesn't want to work with the family and find suitable solutions, then maybe she shouldn't be doing the job.
I don't care if it's voluntary. It doesn't matter whether it's paid or not. You do not operate a group and exclude people for no good reason.
The family have offered lots of ideas of how to overcome any obstacles, and they have been rejected.

We should be long gone from the days that anyone with any additional need is excluded.

Anticipatory duty means that an organisation must think in advance what disabled people / children with a range of impairments may reasonably need, and must make them. This may have included, as Waltons says, finding a venue which was more suitable. It includes talking to parents and maybe professionals. It may have involved a risk assessment at an early stage.
None of this was done.

We weren't even told that we were expected politely decline the invitation - we were only told after DD had taken the invitation home, read it, and asked to go, and talked about it with her friends for a week!
We as responsible parents discussed whether she could go, and decided that we could offer to do a lot of DD's care, and the time where she is asleep, there should really be no anticipated problem. Her medical team also offered training.

This doesn't surprise me. For all that some wonderful Scout and Guide leaders have posted on here that they would make sure a child like the OP's would be included, there are also packs who just can't be bothered. I have a friend with a child with severe CP who loves Brownies and Cubs, and attends both clubs as her options for other activities are very limited. However, both packs keep informing my friend that her DD cannot be included in the week's meeting for one spurious reason or another, to the point that she was allowed to attend only one Brownie meeting in an entire term.

fatowl

There is no more to this case. It is quite simple.

DD has been attending since January. She has been included in unit meetings. They have accommodated her well in cooking activities with gluten free flour.
They have treated her for hypos in the past. We know that one of the leaders has a friend with Type 1 Diabetes, and had sufficient knowledge of what to do when I originally talked the leaders through information which we provided. We even sat outside in the car park for several months, just in case.

The sleepover incident therefore came as a shock to us.

The initial complaint upheld our complaint but also identified that risk assessments etc. were not done for weekly meetings.

It is no concern of the OP if the troop is forced to close - why is it of 'no concern to the OP if it closes' - does she just see Girlguiding as something for her daughter and not for other girls?

I (ex Leader for many, many years) do see this is a very sad and complex situation but as fatowl says, there must be more to it than this and to spend all the time and energy making complaints - and using Facebook to make the complaints 'public' is horrible.

My brother was a scout leader and a scout broke his leg playing football ..... a complete accident .......... my brother was sued by the parents - the result was that he resigned from scouting and the troop closed. Thirty children missed out on scouting as no other leader came forward. Not quite the same situation but so many parents are quick to complain and find fault yet so few volunteer to help.

The idea that it is somehow 'not fair' to the able-bodied members is one that I often come across as a disabled person. For some bizarre reason people seem to think that this is a real consideration when looking into adjustments that can be made to facilitate access by disabled people. It isn't.
My boss argued that it was not fair to the 5 able-bodied members of my team that they always have to do a certain task and I don't have to do it as I am a wheelchair user and I cannot access the room in which the task is done.
Same boss says it's not fair the the team always has to go to an accessible venue for our Christmas party. The should be allowed to choose an upstairs venue that I can't get to 11 years out of 12 because there are 11 able-bodied people and only me in a wheelchair.
Stick to your guns OP.

yes Ragwort, the OP's only concern is, and should be, for her daughter.

It is not her fault if the unit has to close.