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.

Glad to read the update on the blog that it has been arranged for your daughter to be able to go on the sleepover!

I hope you can all move forward together and that communication improves and most off all that dd has a fabulous time on her sleepover!

If my dd's Rainbows thought it was fine to deliberately exclude a diabetic dc, tbh, I'd be fine with it being shut down. You don't send your dc to Guiding\Scouting to have them taught discrimination.

And fantastic that your group have realised this

I am shocked about the lying about the meeting being cancelled, but they are probably feeling sore about the complaints. Less surprised about the overnight, as lots of people are paranoid about the 'what ifs' these days.

Is it either building bridges, and finding a way forward, with this group, or moving group?

If you can't face building bridges, then other groups with more nouse could be great.

If you think you can build bridges, then a meeting with a bottle of wine and nibbles (I can't tell you how many difficult meetings have been rendered sane by the presence of these magic ingredients!)
Just say that you DO NOT want to go over old ground, just see if there is a way forward a) for events in the day, and b) for overnight.

Talk through what you, as non-specialists, had to be taught so that you could keep DC safe, and work out how practical it would be for them to learn that same stuff from you or a nurse or a first aider etc (I am thinking St John's etc) Do you or school have a little card for remembering the essentials?

My DD's brownie group had a disabled child, and mum just came along whenever she thought it might be a bit too much of a headache for the volunteers.

Let them talk about their fears of being sued, and having to meet rules about levels of training for overnight stays. GG is quite strict on this stuff - our District Commissioner, a wonderful volunteer, has not passed the 'take them abroad' thing.

And maybe see if there is any consolation you can bring them - I saw something about a seizure alarm somewhere on these boards.

I don't know a lot about epilepsy except we had a seizure alert dog and owner along to our group, and then everyone knew much more. Epilepsy came up on our paed first aid course, and we have an kid with epilepsy. We asked the mum what we should do, and she told us. As it was identical to what we had at first aid that was it.

Handing out meds and managing diets is routine for leaders and part of what is expected, but if they are worried, then there may be some on-line training they could do. I'll have a look and see. I treated myself to online Risk Assessment training (?20-40 quid) as I thought it would be helpful and was money well spent.

Good Luck

Like somebody said, the Equalities Act requires reasonable adjustments to be made. The Rainbow in question wasn't told she was barred from attending the activities during the day, just that the leaders weren't confident with looking after her overnight. Would the OP prefer that people who aren't confident look after her daughter overnight and she ends up in hospital ?!
Had the OP stayed, I'm guessing it would have affected leader ratios, which would then impact on the number of girls who would be able to go on the sleepover. To say that if her daughter wasn't able to stay over, then the event should be cancelled is gobsmacking! It's essentially saying that this girl's needs trumps everybody elses', simply because she has a disability. Is this really the message mum wants to teach her ?

Oh, and what Beccles said about the overflow of Rainbow leaders!

Desperately I have copied you post covering all the conditions you have managed, and will circulate to all my co-leaders. It is empowering, and we will all be better leaders for reading it - our comfort zones will have widened ten fold. I am inspired.

If I can find a way of sending it to GGHQ I will.

I think GGHQ should aim to help volunteers avoid the massive gaffes reported here, and to have a system to help build bridges when eg a complaint is upheld, rather than just a slap a volunteer's wrist and leave.

twinkle I think your leaders would be impressed by the desperately post. Maybe one for your wine-and-nibbles meeting. I fear you will have to contact them as they may be frozen by the unexpected response to the complaint.

Would it all be over if your leaders' response to, or at, a meeting was 'I'm really sorry, we made a mistake', and then set about following the desperately example?

As desperately has several posts it is this one:

"We have a brownie with some extremely complex disabilities. Her leaders have been trained in all her needs, including using a hoist to get her in and out of her wheelchair, and giving multiple medications.

Parents come on trips out if possible, normally providing transport. Otherwise activities are adapted, for example going swimming at a local pool which does have a pool hoist, rather than at the pool which does not. And sleepovers happen regularly. Mobile hoist and other kit is borrowed, it takes a bit of planning, but it happens.

At a recent massive sleepover, amongst 5000 people, space was made to accommodate a changing bench, hoist and other toiletting kit in a separate tent. .... We've camped with girls who are tube fed and girls who communicate with switches and girls who are autistic. We have where necessary obtained funding from the Guide county and from the LEA, in order to pay carers to boost the number of adults on site, and to cover night shifts where necessary. And we've welcomed parents to come with us - the DBS bit is a fairly quick process."

Inspirational desperately, inspirational

OP - I'm not clear from your blog and from your postings, so sorry if I've missed where you answered this point:

Did the unit find an additional two leaders to enable your daughter to sleep overnight?