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.

Slubber that's why I said Christian based not Christian. I appreciate there has been a move away from promises to God but the foundations of the organisation are based on Christian principles. Therefore whoever you pledge to you're still supposed to be doing your best and helping other people.

Nor lightning fast drspouse, but it's been weeks.
Plus when the complaint was upheld there should have been something in place from GGHQ to make sure the issue was rectified, such was the seriousness of the complaint.

Instead the outcome of the complaint was ignored, the leader's dogged thought train rumbled on and the Christmas exclusion happened.

Not the sign of a good group.

OP has had responses. However it's only been just over 3 weeks (in the weeks immediately leading up to Christmas) since she made her subsequent complaints.

A few weeks is honestly not that long for emails to go down from HQ to volunteers at Region, County, Division and District and for one or more of the volunteer's immediate managers to find the time to have a serious word with her, given that most units are also very busy before Christmas and generally like to take some time off in school holidays too.
I really don't want to spend my family Christmas time chasing parents whose holiday payments are overdue or doing my accounts so I'm not exactly leaping to do those either. If I was a District Commissioner it would be part of my role to speak to this leader but I would also have the Brownie party, the holiday payments and the accounts to do, as well as family presents to buy and wrap etc etc. This isn't something the volunteers will be able to sort out in a few days.

I know the OA and have been supporting her about this case, and advising re disability discrimination and the Equality Act 2010, since the beginning of this sorry state of affairs. It's very disappointing to read some of the comments that clearly amount to a lack of empathy and compassion, which is a major problem and probably why most discrimination occurs, especially in schools and organisations where children are involved. Not sure why this notion of volunteers being able to discriminate is OK, purely because they are volunteers...they are still bound by law not to discriminate...and why do the job then? There is also no hidden 'other side of the story' here, in fact, it would be great to hear the story from GGHQ...the silence explains much.

OP sorry...

It seems as long as the OP gets her way it doesn't matter that the volunteers are forced into doing something they are not comfortable with medical wise and should shut up and put up. Equality only seems to go one way then

Did you miss the bit where the OP offered a parent to be available to help Daisy? If so, why the hysterical response? Yes an insulin pump is a bit complicated if you're not dealing with it every day (IMO) but given a parent has offered to be on hand either staying or not staying at the site as preferred by the leaders there's really no issue. For a pump the parent can even come in at an agreed time to do what needs up be done. There's no sudden emergency situation. Presumably if they take her for regular day sessions they're equipped to deal with a hypo.

The whole point of pumps is to allow users to live more 'normal' lives, less affected by their diabetes. As the parents have offered to come in & do the complicated county adjusty bit in the pump - there doesn't need to be any sort of issue.

The complaints have been put in, with time scales, upon advice from the Equality Advisory Support Service, which bore in mind both Christmas and the sleepover date.

It was only AFTER the complaints were submitted regarding the sleepover, that DD was excluded. GGHQ have since added this incident to the complaints.
For the record, we do not believe there was a Christmas party that night.

Yes, a few weeks since the subsequent complaints gave been made. After no action was taken after the original complaint was upheld.

I take the point that they r volunteers, however, this is discrimination!!! And if that is acceptable & allowed to happen, who knows what else they wud b discriminating against next.
Quite frankly, under those circumstances, wud u really want your child 'benefiting' from this rainbows group..... sadly, I think not.

Interestingly, I first read about this matter on a Private FB page for Rainbow leaders. And it wasn't posted there by the OP, but by a Rainbow leader who was concerned about the story.

That's heartening then oakmaiden? It means that social media had resulted in the story being heard by the 'right' people & will hopefully prevent the same thing happening to others.

I wonder what about liability. Would the leaders be held liable if something went very wrong?

Not if the parents came in and did the pump bit. Which they've offered to do.

Fish ....with the correct training, which was offered, and the obligation to carry out a Risk Assessment, and the fact that there would be insurance...they can't be liable if abiding by procedure. Instead though, there is now a case for disability discrimination. Anything could go wrong with any child who doesn't have a disability/medical condition...

Our Blog post was addressed to Girl Guide Headquarters.
No individuals have been named.

Only a couple of close friends, and those in the Rainbow unit, know which unit DD attended.

Please do not forget who has been wronged here. It is a 6 year old child who just happens to have a condition which means she needs some extra support.

The correct complaints procedures have been followed.
We are perfectly entitled at this stage, when we have had no valid responses, to stand on our soapbox to request some answers.

Why should all this be swept under the carpet and ignored, like the leaders tried to do with our daughter in the last week of term? We do not know the reasons for the exclusion, but someone told GGHQ a lie to keep DD away, rather than put things in place, or accept our offer to support her.

We were originally told in the response to the first complaint that DD wasn't covered by GG insurance at any meetings or the sleepover.
We phoned GGHQ who confirmed that all Girl Guides are covered for all activities.
However we do know that GG insurers were looking into this some weeks ago.

No one is saying it should be ignored or that your DC wasn't treated badly as far as I can see. It shouldn't have happened.

Some, like me, are very uncomfortable with the involvement of social media. You've posted on your blog and shared it on face book, copied it here on Mumsnet and on a diabetes forum. This seems to be your first post on here so it looks as though you joined just to spread the word further.

So it does look a bit like a witch hunt to me.

I really do hope you find a group and a leader ready and willing to take your DD.

twinkle how was your relationship with the leaders prior to this? It just seems very strange that they are allegedly trying to exclude your daughter, and making up lies to cover themselves?

Why should she have to find a group 'willing' to take her daughter? ANY group should be able to take a diabetic child. Bloody hell - are parents of children with disabilities still meant to be grateful if an organisation treats them like a human being?

This group leader seems to be unwilling, that's why I said willing, saintly. Who said anything about them being grateful? No need to make things up.

I have been a member on Mumsnet for many many years. I rarely move from a couple of groups though under my usual name.

The relationship was absolutely fine before the sleepover invitations went out. They were welcoming, and when DD was diagnosed with Coeliac Disease earlier this year, they went out of their way to accommodate her. One leader had a very good knowledge of Type 1 Diabetes, so we had felt confident leaving DD there.

It was a huge shock, when we arrived, with form and deposit in hand, to be told that DD could not go on the sleepover. We asked why we hadn't been told beforehand, and why DD was given the invitation to read and bring home if she wasn't invited. We were told that we had been expected to decline. We had already e-mailed the leaders some days before to offer as much help as we could. The leaders could have phoned us or e-mailed back at that point.

DD still believes she is going on the sleepover because she returned the form and the money.

Twinkle has been around MN for some time, we often have a laugh about threads on here. She definitely didn't join just to pick on Rainbows.

And what do people suggest the OP does to get answers? Correct procedures have been followed, twinkle is just frustrated at being ignored. And, even here in the Hallowed Halls of MN the advice when people have made complaints which have been ignored is make a noise on social media. TBH twinkle has been far more restrained than I would have been.