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.

[unfairtreatment]

Op what are your plans if they don't respond? Will you go forward with a disability discrimination claim?

My child was discriminated against and I know that taking a claim to tribunal is a very difficult,long,stressful battle. It appears that you have a fairly strong case but please bear in mind that you may get a backlash if you take this further.

When I first raised my concerns that discrimination had occurred the body involved threatened me with legal action if I discussed what had happened with anybody . They refused to apologise, flatly denied that discrimination had occurred and then did all they could to discredit me and my child to the tribunal judge. This was a body which had been praised for being 'as inclusive as you could get towards children with disabilities'. They were later found to have committed multiple acts of discrimination but then delayed even sending the apology to my child as ordered by the court. I didn't go public or mention it on social media as they were so angry that anyone had dared to challenge them that I'm sure they would have been quite happy to cause us even more distress.

You may get an apology at the end but at what cost? I'm not sure how easily your dd could fit back into the group now to be honest .My claim was against a school but was only made when my child had been removed from that environment.

[SineOfTheTimes]

Failing to make reasonable adjustments to allow children with disabilities or additional needs to take part in activities is wrong.

I am a Guide Leader. I have over 30 Guides, including two with significant additional needs, two with some additional needs, and four Leaders with chronic illness and/or allergies ranging from moderate to life-threatening.

We do our best to create a programme, based on the girls' ideas, which is suitable for all of us, and includes outings and residentials.

We are hugely lucky to be supported in this by the parents. One of the parents of our girls with additional needs comes most weeks, and two are registered to attend residential events.

I aim to volunteer in a professional way, if that makes sense - doing my best to ensure that everyone has a great time whilst ensuring that the policies and procedures set out by Girlguiding are followed.

In Twinkle's case, it sounds like her daughter's Rainbow leaders have been brilliant at meetings, ensuring that activities are adapted for her and adjustments made, and the experience is an enjoyable one. They may have felt that your her briefing was sufficient not to also involve the advisor for members with additional needs at that point. This is not a requirement, they are there to help us but we do not have to contact them, and generally the parents are (as you would imagine) the ones with the most expertise.

Ideally what would have happened is that as soon as the Leaders started planning the sleepover, they would have spoken to Twinkle and talked about how best to manage the residential. Unfortunately, this did not happen.

With the current situation, Twinkle has volunteered to be in the same village, but this isn't the same as being on site. If anything were to go wrong, then it is not only Twinkle's daughter who needs to be looked after, but all the other Rainbows. If the building is that small, then they will be very aware of what is going on and possibly become distressed. Twinkle has said that there is unlikely to be a problem, but part of doing the residential risk assessment is thinking about the "What-ifs". As a previous poster has said, dealing with these things in daytime is one thing, at night in an unfamiliar place is something else entirely.

I would suggest that in this case, Twinkle takes up the offer of a daytime visit (this is a really common thing at residentials, for all girls), and then Twinkle works with the Leaders to plan a sleepover before her daughter leaves Rainbows, at a venue which would allow her to attend with her daughter. This way the Leaders are able to gain in knowledge and confidence. Ideally the Brownie Leader would also attend in preparation for Twinkle's daughter moving up.

I know that this means that Twinkle's daughter wouldn't be able to do the whole sleepover this time round, but it does mean that she would still get the chance of a Rainbow sleepover, and ideally a smooth handover to Brownies and their residentials.

[TwinkleChristmasStar]

A sleepover, is a sleepover. Not a visit and then having to leave when everyone else is being tucked up into bed. My DD is very bright but she has a medical condition. How would you feel knowing you had to leave, when everyone else was having fun, simply because she has Type 1 Diabetes?

A daytime visit puts DD at a substantial disadvantage to her peers, and is treating her unfavourably. Rainbows therefore have a duty in law to make reasonable adjustments.

We have asked for VALID reasons why the reasonable adjustments WE have suggested, at any level, are not appropriate, and we have had no response. We have been offered no reasonable adjustments back.

DD requires the same care, if not more care, during the day as she does at night, so the reasoning is not logical.

5 minutes away is not unreasonable - DD can do her own immediate hypo treatment - eating two glucose tablets (the leaders have supervised this previously), and then after that there are protocols of time periods which are followed. We could be there for those.

[saintlyjimjams]

What is likely to go wrong if twinkle or her husband is there doing the calculations for the pump bit? What's the point of having a pump (usually given to enable people to live more normal lives with diabetes) if people then ignore the existence of it & the fact it controls diabetes well. I'm not clear what is likely to happen that requires acres of space & may distress other children. I don't know how to work a pump myself but my children have spent plenty of time day & night - including bed sharing - with a child who does have a pump & I can't think any anything that could happen that would be hugely distressing for them.

[Waltons]

Twinkle, there are a few things I'm still trying to get to grips with.

Firstly, you've mentioned several times that the leaders expected you to decline the invitation to the sleepover. Something must have led them to believe that - a previous conversation of some sort?

I would certainly never assume that any child wasn't coming on an overnight simply because they had additional needs unless I had at least some grounds for that assumption.

Obviously it would have been preferable to speak to you about it specifically, but although no one did so, the leaders had gone to some trouble to manage her issues over two terms.

Despite that effort on their part, you received an apparently sudden "refusal" to adapt an activity for her needs. That takes me full circle, and back to the belief that something had already been established in the leaders' minds about the likelihood of her being able to attend such an event.

It does sound to me as if your own assumption that she would automatically be able to attend took them by surprise.

The second thing that worries me is this:

The leaders have cared for her over the last 11 months including treating hypos and caring for her when hyper.

Between January and October, she would have attended around 24 weekly meetings, each lasting an hour. What you write indicates that she has had at least 3 incidences of hypos or hypers in those 24 hours. I'm not sure what the norm would be, but that does sound like a pretty high frequency.

That suggests to me that the diabetes is (or was until some point over the preceding 9 months) not that well controlled, and it would give me real cause for concern for an event lasting far longer than an ordinary weekly meeting. How recently did she get the insulin pump?

[AliceinWinterWonderland]

I think what frustrates me are the comments from people saying that the OP should go find another group, another leader more willing to take her DD or that the OP should be a volunteer or leader to enable her child to be included.

I guess this explains why my dcs are not in any clubs then. I cannot volunteer or be leader of a club due to having 2 dcs with SNs who have needs that would conflict with that. And I simply don't have time to go "shopping" for a disability/SNs friendly club for them to attend.

But apparently it's okay to tell the parent of a child with disabilities/SNs that the only way their child is going to actually be included is to either shop around to find a "willing" (read that as tolerant, I suppose ) or either lead or volunteer at a group myself (so basically be their 1:1 at the group meetings).

It's so easy to say, isn't it? There just IS no normal and no real inclusion in so many instances. And they make it difficult to fight because they know that parents of children with disabilities/SNs are often already fighting for school provision, medical help, and so on, so they figure they won't have the spare energy to fight this too.

I HATE that my dcs miss out on afterschool activities and clubs and scouts and such. Those being critical of the OP, have a think about how you'd feel knowing you can't just let your child join what they'd like... you have to do your own "risk assessment" and chat with them to see what's involved and if your child could deal with it.. and if they could deal with your child and their disabilities... and then hear "oh well, if you could be there the whole time..." and what am I supposed to do with my other dc, who needs supervision? or worse yet, they say "I don't think we can accommodate him.. we don't have enough staff to provide the support he needs and we don't allow parents to attend." Then explain to your child that no, they can't do that... and wonder just how much information you want to give them about why, because you don't want them to feel badly about themselves.

My 5yo's recent question to me about him not being able to participate in something was "Don't they want me?" Regardless of everything else, it's essentially a child we're talking about here that is being excluded for no other reason than that she has a medical condition that is obviously not her fault.

[Peedie]

I am involved with our local Beavers unit as a parent volunteer and have attended a few sleepovers as a PVG'd adult. Can I just say that lots of Beavers (with no health issues) stay just for the day, for a variety of reasons, and and I don't believe any of them felt 'disadvantaged' as you put it. That's just your view of the situation as an adult - all the day-attenders I've seen have tripped off home happy with the things they've made and the experiences they've shared.

[dayshiftdoris]

If the village hall set up is not appropriate then the sleepover should not have been planned there under anticipatory arrangements... Simple.

And the laws actually do not rely on parents to fill in the gaps... The organisation is expected and legally required to offer inclusive activities. Many parents, me included do actually fill in the gaps though to support our children and the clubs they attend.

Twinkle has been little opportunity to even discuss it and that is wrong. My best friend is a guide leader and I know that she has taken many complex needs children away over the years - it takes careful planning.

My son is going on his first residential with school in the summer... Discussions around it started in September and so have preparations as he will need to be taught some specific routines.... At no point is he not going - in fact I was pursued at the meeting by his teachers as they want him there.

Twinkle....

I have made a formal complaint under the DDA too... It was a hideous experience that prompted the complaint and my son is still excluded from the activity as a result. I had to seperate out my feeling of wanting what was 'right' to what I could reasonably expect from the organisation to resolve it. My son couldn't go back so it was different but I secured further training and systems to be established to prevent it happening again.

You might need to consider - as I did - if you could ever trust them to work effectively with you again and longer term where you want your DD to go - an inclusive unit or this one who may pay lip service and views your DD as different. I decided that was never going to happen which would put everyone at risk so in addition I secure an alternative activity. It's not ideal but my son's emotional needs were heavily entwined making it tricky - you have protected your DD to now so you atleast have time to extract her gently.

In other words - Keep sight of what is right for DDA

[dayshiftdoris]

Right for your DD NOT DDA!!!

[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....

[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.

[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]

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.

[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.

[Waltons]

Sorry - italic fail.

[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.

[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.

[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?

[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.

[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.

[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]

No issue at all then!

[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

[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.