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.

[Waltons]

Annie, it makes me sad to hear that about the CP child. Was it the summer term? If so, I would have some sympathy for the leaders if much of the programme was outdoors.

We had a CP child for a couple of years, and unless mum or dad were willing to come along (they usually tried to), we had to find someone else to supervise him 1-2-1 when we were outdoors. That just isn't always possible.

Twinkle, I don't know a single leader who does written risk assessments for weekly meetings. The risk assessment is in my head, should anyone come calling. Writing it down each week would take almost as long as preparing activities.

For a child with additional needs, a global risk assessment would be prepared when they joined, and agreed with the parents. That would almost certainly identify activities which could never be made accessible to the child.

[Lifestooshorttosleep]

It saddens me to read this. I am sure the volunteer leaders in question are upset and anxious about this and it's clearly upsetting for Twinkle's DD. I agree with other posters though, taking a "legalistic" stance will probably end in no-one being happy as the pack will probably close, leaving no Rainbows for the OPs DD to go to at all. It seems a shame that the OP and the leaders cannot sit down and figure out a workable solution for all. I speak as a volunteer myself in a youth organisation.

[DaisyFlowerChain]

The sharing on Facebook is awful. These are volunteers who give their time up for the children. The OP won't volunteer with the group as says she doesn't have the time yet wishes to force the volunteers into either doing something they don't want to take the risk of or shutting them down.

I get that all children should be included but the OP could have simply missed this trip, trained and got CRBd to allow her to stay over on future ones if that's what's needed.

[MovingOnUpMovingOnOut]

This is horrible. Poor you op and your poor daughter.

Fwiw just because someone is an unpaid volunteer it doesn't mean they shouldn't be doing a good job. In fact I would go so far as to say that it is quite insulting to volunteers to suggest that because they are "just volunteers" they shouldn't do things properly. Most volunteers I know take a huge amount of pride in what they do and try to do their very best.

If the unit gets closed down that is not at all the fault of the op. She has not excluded a child with a manageable condition. The responsibility for the unit's success lies with those volunteers who run it and if by their negligent actions (like failing to do the risk assessment) they get closed down then the blame very clearly lies with them.

Normally I'd agree with those of you saying "if you want a voluntary organisation to do something differently volunteer yourself!" were it not very clear from the original post that the op has offered to help.

[Waltons]

Twinkle, I'm not sure what you mean by this point in your OP? We phoned to check that it would be ok for DD to attend the last meeting before Christmas, given the issues surrounding weekly meetings.

What issues were there "surrounding weekly meetings"?

[lurkerspeaks]

I agree that the situation should never have arisen and have said that multiple times. I am sorry that others feel I am not coming across well but I am trying to point the OP towards a pragmatic solution for her child (and the other children in the "problem" unit).

There are obviously leaders involved who are struggling to adapt to having a child with additional medical needs in their unit.

However they must be doing something right as they seem to have other kids in the unit and the OPs child wants to attend meetings. It looks like they need help and support from their local district team to be fully inclusive. That will take a long time to put in place and if I was the OP I'm not sure I would want my child being the guinea pig. We all know from the education boards that schools vary in their provision for children with additional needs. Surely this is the same.

My advice to the OP in the meantime has been to look around for another group who will accommodate her daughter as the relationship with the original unit has now broken down to the extent. I would be very upset if I was the leader to find that this was all over social media and would not want that child back under any circumstances.

[MovingOnUpMovingOnOut]

I don't know a single leader who does written risk assessments for weekly meetings. The risk assessment is in my head, should anyone come calling. Writing it down each week would take almost as long as preparing activities

Waltons that is astonishingly stupid. The whole point of the risk assessment is that is should be accessible to all the leaders and volunteers at the group and it cannot be if it is in your heads! Also, what happens if you are sick or have to leave the group for half an hour?

I would also have thought it perfectly obvious to anyone with brains that you use the same assessment each week for the same risks (eg fire, accident and injury, dangerous or hazardous substances, girls with special educational or medical needs, young volunteers, pregnant volunteers etc etc) and just add an amendment or an extra section for any additional activities that carry extra risk that are not already covered on the risk assessment.

What sort of poor training have you received that you think having a risk assessment "in your head" is ok??!

[LeftyLoony]

I really do hope the troop does close if they doggedly refuse to be inclusive. Yes that is for the greater good as far as I'm concerned because it's not healthy for children to be in an environment where exclusion for any reason is acceptable.

As for those saying the arrangements would be so hard to have a parent come along no it's not. Its what we do for DS and DD as necessary - the DBS check was simple. Both me and DH have had them done as we help in different ways, recently DH gave DD a piggyback on a hike as it was too muddy for her wheelchair. We're currently looking out for an all terrain buggy.

But the expectation is always that my kids will be there, they will participate and they make any arrangements necessary to accommodate that. We as a family work with the leadership to support and facilitate that.

[DoesntLeftoverTurkeySoupDragOn]

These are volunteers who give their time up for the children.

No, they apparently only give up their time for children who have no medical needs

The OP won't volunteer with the group as says she doesn't have the time yet wishes to force the volunteers into either doing something they don't want to take the risk of or shutting them down.

The OP states: "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". She has offered to help though.

[LeftyLoony]

applauds LeftOverTurkey

Being a volunteer and giving up your time, whilst admirable, doesn't allow you to behave in a discriminatory manner.

Any parent here if their child was being treated unfairly would speak up about it. They just would. There are threads about it every day. It's an entirely normal, reasonable and rational way to behave, to protect your child and to defend them from unfairness.

Why are those of us who are parents to children with additional needs and/or disabilities expected not to do that? Our children are not lesser to yours.

[SunshineAndShadows]

I think everyone agrees that Facebook/internet awareness raising is not ideal but it's hardly the OP's first attempt to communicate is it? This situation has arisen because the GG volunteers have discriminated against the OP's daughter, lied to the OP about events taking place and failed to respond to the OP's communications and complaints. I'm sure the OP would have like to have sorted this out months ago without Facebook etc But GGUK need to step up and take some responsibility

[WhereDoAllTheCalculatorsGo]

I'd love to say something rude and personally attack you WUME for your offensive remark. That would be wrong of me though as it would be against the talk guidlines.
I shall settle for a stiff upper lip and say
how very dare you?

[LeftyLoony]

Calculators you missed disablist out.

[TheOnlyOliviaMumsnet]

AHEM
peace and love MNers please.

[Waltons]

MovingOn, there really isn't any call for that sort of rudeness.

Risk assessments are shared verbally with leaders at the start of each evening (or beforehand if necessary) and discussed at regular leader meetings.

Risk assessing is a fluid process, and always should be. There are too many occasions when a child has an accident and the responsible adult bleats "but we wrote the risk assessment". It creates a false sense of security, and can lead to people becoming less risk-aware, rather than more so.

Just as you do as a parent (assuming you are one), in Scouting we risk assess continually. The same game can present different risks each time it is played because of the chemistry between a particular group of children. Last week's written risk assessment is of as much use as last week's fish and chip paper. Yes, we know what the generic risks are, but they can present in a dozen different ways.

For all my alleged "stupidity", I have managed to get through well over a decade in Scouting, helping several hundred young people to enjoy adventurous activities, many of which carry an element of risk, without a single incident that required outside medical attention.

[WhereDoAllTheCalculatorsGo]

blimey, that was quick

[WUME]

Yes it can be - the patents could make themselves avaliable.

But they refuse to.

[WUME]

Yes it can be done*

[WUME]

I have no idea.

I have no idea why a child with either of these conditions would need all this special attention.

Surely on the sleepover it's just a case of taking in her own food?

But her parents seem determined to kick up a fuss and the leaders seem to consider it undoable. Makes me wonder if there is more than meets the eye to this story.

Either way, her parents are kicking up a shitstorm which affects 20 other families.

But apparently that's ok.