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.

[Becles]

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?

[senvet]

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

[Frogspawn21]

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!

[senvet]

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

[MeirAyaAlibi]

And fantastic that your group have realised this

[MeirAyaAlibi]

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.

[5madthings]

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!

[DawnMumsnet]

Hi there,

We've been asked if we can move this thread somewhere permanent so it doesn't auto-delete after 90 days.

We're therefore going to be moving it over to our Special Needs Children topic shortly.

Thanks to everyone who's contributed so far.

[RueDeWakening]

With the best will in the world, it's not possible to completely eliminate hypos or hypers, even with a pump. I've had a couple of minor hypos in the last year at Rainbows, and I'm the leader, doing significantly less running around than the girls in my unit!

Things that can affect blood sugar are many and varied, as a quick example:
temperature - hot weather makes insulin more easily absorbed
adrenaline - can cause both hypos and hypers, depending on the individual
non-compliance - either sneaking extra sweets or refusing food (unlikely at Rainbow age, more likely with Guides tbh)
hormones & growth spurts - both cause insulin ratios to change, I run two different basal rates to cope with pre- and post-ovulation in my cycle for example
what direction the wind is blowing in - well, that's what it feels like sometimes! :o

[saintlyjimjams]

No issue at all then!

[TwinkleChristmasStar]

Waltons yes, the leaders told us that DD had been hypo, and that she had been given two glucose tablets. On both occasions it was the end of the meeting, so I checked her blood glucose and took her home. Hypers are really not an issue over an hours meeting. Yes, they are consideration over a longer period of time, but we haven't had an issue we haven't managed yet, and we would be on call / there, should the occasion arise.

momb
Well done for doing the epipen training :)
It is reasonable, and good that the guiders had concerns. However, they should have discussed with us what the realities and possible responsibilities were. We have offered our support for as much or as little as is required / wanted.

Saintly

1. We offered to do all carb counting and provide DD with food. I did write a long explanation, but its not needed. It would be sorted out.
   

1. DD does all her own blood tests. She doesn't need supervising, although we would like someone to be there. There are no needles to dispose of or touch, as she has sealed cartridges. She also has a continuous monitor which shows the direction of her blood glucose which usually gives lots of warning of any potential rise or drop. Again, we can help / train / be there.
   

1. Inputting numbers into the pump is the main item someone would need to learn unless we could be there. DD can do most of it anyway, but we don't allow her to send her own insulin or put the actual numbers in. Again, training could be given, or we can be there. It is only 3 meals, and the first one is probably shortly after drop off. We can be there for tea and breakfast. Once all meals are out of the way, there should be very little other care.
   

1. Don't worry about DD not eating! She knows she has to eat all carbs, and eats well anyway. We would most likely provide lunch and breakfast anyway.
   

On a pump, you can alter the basal rate by a percentage to avoid the child running low or high. We would monitor DD beforehand and then set this appropriately, more than likely so DD was higher than she usually would be at home.

As you say, we are doing our best to offer to minimise responsibility. 4 minutes is nothing if the leaders can just check that DD pops 2 glucose tablets in her mouth if hypo. They have done this before.

With communication all this could be worked out.

[saintlyjimjams]

I have observed pumps being used & would have the following concerns

1. carb counting - so I'd either tell parents what we were eating & ask them to calculate. Or ask them to send in with a carb counted packed tea
   
   
2. blood tests - I'd want some supervised practice runs with parents or would want parents to come in and do that
   
   
3. programming the pump - same as above, either supervised or oarebts to come & do that
   
   
4. compliance from the child (in eating all the carb counted food). Easily solved by ensuring access to a parent by phone
   
   Hypos are part and parcel of having diabetes - obviously best to be avoided but easily managed by conversation & communication with parents in advance. Not a reason to exclude (if you exclude a child with diabetes because they might have a hypo you'll be excluding them from absolutely everything) I'd want to know for example how likely the child was to tell me about a hypo in front of friends & I'd want to know about decreasing the risk of hypo overnight? If that needed parents to do a before bed check - fine.
   
   All easily solved. And as parents were willing to stay as close as possible without all the risks of not having someone nearby. A 4 minute delay in having a parent alongside decreases just about any risk going.
   
   I'm not understanding why they have said no. If they have concerns they have to articulate them - and explain them so they can be discussed.

[dayshiftdoris]

I suppose I am saying there likely to be no real winners in this situation but I think you should be Thanked for raising it... It an incredibly difficult thing to do.

Please don't be pressured to fix the world though (I know I felt it) - just your DD will be enough.

[Waltons]

Hi Twinkle

No, I don't have experience of Type 1 diabetes. It will eventually come my way though, and I hope I will deal with it appropriately.

The leaders must have spoken to to you about the hypos/hypers that occurred in the intervening months before the sleepover issue arose?

[SineOfTheTimes]

As I said in my initial sentence, failing to make reasonable adjustments to allow children with disabilities to take part is wrong. I am thankful we have been able to accommodate all the needs of the Guides who have wanted to join us so far; I wouldn't want to turn anyone away. Living with disabilities or medical conditions is so hard and we do not want to put any further obstacles in the way of that.

Ideally, the Rainbow Leaders would have involved you in the planning from the beginning, Twinkle.

But they didn't, and this is where you are. So what do you want to happen now?

If your aim is for your daughter to take part in a sleepover as a Rainbow, then would it be possible to work with the Leaders to plan a sleepover at a later date, as outlined above? If you are also able to involve the Brownie Leaders, you are very much paving the way for a smooth transition to Brownies and their residentials as well.

If the Leaders have been as understanding and helpful in meetings as you say so far, as well as effectively helping your daughter to manage her diabetes, I am really confused as to why they would assume you would be declining the invitation.

[TwinkleChristmasStar]

Do you have any experience of Type 1 Diabetes Waltons?

With support, training, and help, children with Type 1 Diabetes can do anything they want to.
One sleepover, where DD is going to be excited and up late / early is really not the mountain you make it out to be.

The only conversations with the leaders about my DD's needs were on the phone before she started; on the first evening when I handed over help sheets when it became clear one leader had good knowledge of T1 Diabetes; information written on DD's joining / medical form on the first night; at the point when DD was diagnosed with Coeliac Disease (as they bake), and briefly after that at handovers if necessary.

There was a conversation later about but this was after the sleepover was declined.

[Waltons]

Sorry - italic fail.

[Waltons]

Thanks, twinkle.

I'm asking because I am sensing some sort of dissonance here. A communication failure. We're seeing leaders who have done all that you expected to meet your DD's needs for 9 months, and then suddenly there is a big change of tune.

I've come across Scout leaders who are no good at dealing with parents/SN/whatever, and known many more who are absolutely great at doing the same. I've just never come across leaders who were doing great and then became uncooperative for no apparent reason.

^First the hypos. DD went on a pump over a year ago. Rainbows uses up more energy than usual at this time of day. As any mum with a child with Type 1 Diabetes will tell you, you need to adjust things if things are not perfect. DD hypoed at the end of two sessions that I can recall, in the first few weeks. We made the necessary adjustments (ensuring she has a snack before going in), and I do not believe she has had a hypo since.

Her diabetes is at present well controlled.^

This would give me cause for concern. You won't of course have had any experience of an overnight like this, but there'll be a lot of over-excitement and energy involved. Whatever the leaders do, the girls won't get to sleep much before midnight, and they'll be awake again at 5am.

I would be worried how your DD would cope with that. Although night-time at home is quiet, and the pump copes with that, the sleepover could be very different.

The question you didn't really answer (I'm asking again, as you've said I can) is that I sense there were earlier conversations, prior to the sleepover invitation, about your DD's needs, and the leaders may have come to their own conclusions about the sleepover invitation in the light of that?

Again, they should have spoken to you about it specifically, but if they felt certain in their minds that you would decline the invitation as a result of previous conversations, they would probably not have felt that it was necessary.

[TwinkleChristmasStar]

ClimbingFrame that sounds like a great example of anticipatory duty, before the event. Thank you for sharing.

I am pleased to hear your DD had her confidence boosted and a great experience. That is what I want for my DD too.

[ClimbingFramePlanningEnquiry]

A child choosing not to stay at a sleepover is very different from a child not being allowed to stay at a sleepover.

My dd has a sleepover, at school, last year (year 2, she was then 6). I was doubtful as to whether she should go, because of a couple of issues she has (no medical issues, but she has AS, and a wholE host of issues that go along with that)

I talked about it with the school - in fact they raised it with me, a couple of months ahead of other parents getting notification of the date - and between us we found so,unions to most of the issues. I know this is not the same as medical issues, but it is possible to handle any adjustments needed properly and sensitively.

Dd went on the sleepover, fully prepared by both me and her teacher, knowing what she would need,to do if she had any problems at all. It was a roaring success, and she had her confidence boosted massively as a result. Which, of course, was theorist of the whole thing.

[TwinkleChristmasStar]

Waltons
Forgive me if I miss all your questions, or indeed anyone else's. I am trying to look after the children and not let DD see me reading / replying. Feel free to ask again.

First the hypos. DD went on a pump over a year ago. Rainbows uses up more energy than usual at this time of day. As any mum with a child with Type 1 Diabetes will tell you, you need to adjust things if things are not perfect. DD hypoed at the end of two sessions that I can recall, in the first few weeks. We made the necessary adjustments (ensuring she has a snack before going in), and I do not believe she has had a hypo since.

Her diabetes is at present well controlled.

When we had the invitation to the sleepover, I sent an e-mail which in a nutshell said that DD would very much like to attend. We acknowledged that an overnight stay would be different than a weekly meeting. We then set out ways we could help. We asked if she could go "subject to us being able to discuss her needs and work out how we could help you (the leaders) accommodate her."

We got a response back saying that the leaders would like to like to see us when we dropped DD off at the next meeting.

dayshiftdoris
Thank you for your message. It is appreciated. As you say, what we are doing now to raise awareness is to prevent this happening to anyone else. I have already heard about a leader who have sought our their SN coordinators details as a result for example. Leaders should be aware, that even as volunteers, they are part of an association which should be helping local groups to be inclusive.
Our son is 4 and is following behind. Strangely, we always thought that he was the one we would be signing up to be a leader with in years to come.
We are doing this for both children.

The emotional impact on DD is what we are trying to protect her from. Whatever the outcome we will do our best to ensure she is happy and this has no or minimal effect.

[dayshiftdoris]

Peedie

If a child can not and does not want to stay overnight and that is approached in the correct manner that is fine

Assuming that she would be excluding herself is not...

My son may go for a shortened residential for example but that has been discussed and considered amongst the adults and with him through a social story.

It really in not ok to just exclude as a blanket....