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.

Afterthought that's how it happens with my kids at their scout group. We may not be needed all the time but we go in when requested to support the leaders. Apart from when DH gave DD a piggyback we generally work with other kids and are just on hand in case a situation develops that the leader needs help with. The very specific aim of this is so they don't feel any different to the other kids - there are parent helpers at every meeting and they don't have their parent there for just them so it should be the same for my kids.

Sunna 'trial by media' can generally be avoided if the party involved engages to start with or engages in the complaints process. In this case neither happened.

DaisyFlowerChain just because you are a volunteer does not exempt you from your responsibilities to uphold the law.

Everything was going great from our perspective until October 8th when DD was refused to go on the sleepover. We had in between the invitation being issued and the 8th already sent an e-mail to say DD would like to attend and to offers ways we could help.

It was only after the first complaint was upheld that we found out in the complaint about other issues.

The group really had been excellent up until then. They had cared for DD on the few occasions she needed it. DD loves going. Their activities have been fantastic. We were so pleased when they were so inclusive with the baking activities.

After that was the incident where DD appears to have been excluded on purpose.
We thought (given no one had contacted us or DDs medical team) that things may not yet be in place for DD, hence saying that we would stay on site or in the car park (you can see the door) or in the pub opposite to effectively be responsible for DD. We both ensured we were free to go that evening if that's what was needed so one could care for a child each. (I usually dropped off with DS, as DH was on his way home from work).

Sorry that should have been:

"It was only after the first complaint was upheld that we found out in the response to our complaint about other issues. "

Nobody would be at risk of complaints and/or accusations if they behaved like decent human beings - we all know this is just not true, lots of parents (not saying that the OP would do this) do make accusations and complaints against leaders (and teachers) for incredibly minor issues - as I said earlier, my DB (as a scout leader) was sued by a parent when their son broke his leg playing football. He left scouting, the troop folded.

Years ago, as a leader myself, I was asked by Social Services to offer a place to a child with very complex needs who would need 1 to 1 support. Our Pack had only one leader (myself) plus various parents on a rota, I tried very hard to find a supporter but couldn't. I asked the Social Worker if they would consider coming to the meeting to be the supporter themselves - they laughed in my face and said 'no way, we're not paid to work evenings'. .

I do think this is a very sad and complex situation and clearly hasn't been at all well handled, but what outcome do you want now OP? Would you really want your DD to go back to this group?

Something doesn't quite add up - seems odd that they had been absolutely fine with her until the sleepover. It is obviously a much bigger responsibility but I would have thought there would have been some red flags before then.

Ragwort - that was just SS trying to save money. It's what they do. It should have been them funding a 1:1 worker, not expecting an organisation run by volunteers to do some free enabling for them.

Afterthought it's not that much of a bigger responsibility considering the parents have offered to stay a few minutes away & deal with any issues. It sounds like egos have got in the way of common sense & the leader won't be seen to back down.

You shouldn't be excluding people because of s complaint!!! I put in a very serious conplaint about a service ds1 accesses - he returned under certain provisions (from our end) but organisatins can't refuse to take a child because the family have complained.

OP has been clear about what she wants. She wants her Dd to be able to attend a sleepover with her friends. She has shown she is happy to provide the support neeeded & stay 4 minutes away. There shouldn't be any sort of problem.

Ideally, yes, we would like DD back in her group, with her friends, and attending the sleepover with someone we trust who is happy to work with us to ensure DD has an enjoyable experience whilst being cared.

We hoped that one of the leaders, or even another local leader, would offer to do this.

Hands on support from us and training from DDs medical team has been offered.

We also hope this never happens to anyone else, including our younger son.

"Public drubbing" "legal case" "modern way"

Shall we go back to the 'good old days' and institutionalise them, then? No need to be inconvenienced by those 'pesky parents' wanting that equality nonsense then, is there?

Seriously, those against this family, would YOU tolerate this behaviour towards YOUR FAMILY?

Then why should families who have children with additional needs or disabilities just accept it?

I meant that residential trips are in general a much bigger responsibility than an evening meeting, regardless of whether a child has a disability. I am just surprised that everything was going fine until a residential as I would have thought that there would be some indicators beforehand.

I don't se how she can go back. The loss of trust and the breakdown of the relationship between parents and leaders would make that impossible, I'd have thought.

Frankly, I wouldn't want my DCs to go back after that experience.

You can't as an organisation exclude someone for complaining though!

It's an overnight rather than residential really isn't it? It's not like they're mikes away from home or 100's if miles from parents. Considering a parent has said they will stay within minutes of their dd it just shouldn't be an issue.

Did the group offer no adjustments to you at all?

It is my understanding that reasonable adjustments mean that adjustments should be made where possible but they should not disadvantage other people.

As an example, for a child with severe food allergies we may (depending on the food) suggest that parents provide their own food for their child which we will then ensure does not become contaminated. We would obviously take the cost of the food off of the balance. However, a parent could refuse this as they don't want their child to feel different. This is fair enough, but ensuring that all foods provided for all children are gluten free or whatever could increase the cost significantly.

I think the whole 'reasonable adjustments' is such a grey area and open to so much interpretation. Did I read that they offered your daughter to go and then go home at bedtime? They may have thought that was a 'reasonable adjustment' - some girls would probably do that anyway, I know they do at ours - we always have an 11pm pick up option.

I use the term residential because I am a residential adviser for Guides - my remit covers anything that involves staying over. The considerations that need to be made are largely the same whether it is one night or seven nights. My 'job' includes checking risk assessments - I could potentially put someone at risk if I thought 'oh it is just a sleepover'. Maybe I am being dramatic but I take my responsibility seriously - I don't want anyone getting hurt on my watch!

I am in no way defending the leaders' actions if they have discriminated against a child. I think a lot more training needs to be given to help leaders understand how to include children with disabilities. I find it relatively easy as I am a teacher who specialises in SEN - but if I didn't have that background I would struggle.

It should not be the case that the blog post shared on FB (not campaign) was necessary. But it was. Because the complaints process was not fully engaged with at local, then district, then national level. Those avenues were tried first.

Having three children with multiple complex additional needs and physical disabilities I have experienced exclusion. Unfortunately as I was having the as usual constant fight for provision in other areas I didn't have the mental energy or strength to complain. But now I've seen inclusion as it should be I don't think anyone should settle for anything less.

The emphasis in asking people how they would react if it was their child, their family is because unfortunately there is an element here of people believing that parents of disabled children should behave differently to everyone else - they should accept their child being treated differently 'for the greater good' or because it's being done by a volunteer when I very much doubt they would accept that for their child.

There's an element of people here believing that parents of disabled children shouldn't complain on social media when other parents freely do. It's too public, too damaging. Well why is it damaging? Could it be that the behaviour being highlighted is unacceptable? That's the only way it'd be damaging, if it ws highlighting someone doing something wrong. Oh... Wait a minute...

It feels like the OP is under criticism for finding a voice and using it. Other parents would not face the same criticism highlighting parenting issues that didn't involve disability. As a community parents of disabled children ARE expected to out up and shut up, particularly here on MN. People are allowed to post pretty appalling stuff because it's 'an opinion'. Highlighting that our children are being treated badly or unfairly makes people feel uncomfortable because they'd prefer to believe true equality exists, just as long as it doesn't trouble them in any way. We get accused of being 'grabby' and 'entitled' just for wanting the same things for our children as everyone else gets for theirs - a decent education, healthcare and a social life.

Well said Lefty.

The guide leaders are volunteers, you should train as a leader if you think you could do it better. U sound quite a pita to be fair. They probably have 20 other 5 year old to look after, you need to attend every time with your child if you so concerned about her. Or arrange for someoneslse to if you don't want to be there. I suspect that there was a misunderstanding when u where told that rainbows was cancelled. Maybe you should of gone into the rainbows Tha evening and asked it would of been apparent if they where lying.

"You complained about us so we will not include you in our party"

Righto. That's seen as acceptable, is it? It's the worst form of playground pettiness there is.

If the leaders have been told by higher up not to say anyhting, then they should say that. If GG as an institution didn't want the OP's daughter to attend until all issues were sorted out, that too should have been stated. But that didn't happen. The OP was deliberately lied to, in order to exclude her daughter.

I really can't believe anyone is defending the leader, or accepting that this behaviour is ok.

It is truly depressing that the view of so many is that inclusion is ok, as long as no one is put out at all, or as long as the disabled person doesn't kick up a fuss if they aren't treated equally.

SunnaClausIsComingToTown How is it a daft question? Are YOU always 5 minutes away from the school (very restrictive, how do you go about your normal life?).

I am not saying that your child should be ignored an left out btw, I just think you are going about this the wrong way and just ailinating yourself and more importantly your child.. If the group turns down your assistance to stay an look after your own child to enable her to attend then yes they are bang out of order.