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.

I can see this from both points of view, I volunteer in a similar setting and my friends son suffers from diabetes.

Diabetes can be very difficult to manage by a child of that age, the amount of care that had to be done by the parent is immense to keep him healthy. Even the school asked for parental input on a school residential with a similar set up to what the op had with rainbows.

Now to look at it from a volunteers point of view, we have minimal first aid training. We also have 19 other under 8s to care for, with potentially only 4 leaders. If we were to give one to one it would be difficult to supervise the other children effectively.

You say you don't have time to volunteer to help the group, please find the time. You would be an asset, you can offer the care your daughter needs and will help her inclusion. By the way I have 3 dc, 2 working parents including an asd child, I still find time otherwise our colony would close.

I find it astonishing that a child would be excluded for this type of medical issue. I too am wondering if it's something like what others have suggested, that despite her diabetes being largely well controlled, the hypos and hypers in meetings made the leaders worried that there might be problems on the overnight. I'm imaginging they'd be very worried about the girl, and, unfortunately, legally, the repercussions, if something happened.

Doesn't excuse any of the other stuff at all, I'm just trying to understand why something like this would cause the girl to be excluded, as it just makes no sense to me at all.

I should say I'm fully into inclusion but a setting has to work with a parent and sometimes there had to be compromise on both sides.

*imagining not imaginging...

Frosty the OP hasn't asked for 1:1 supervision of her dd though and has offered to provide supervision at appropriate times during meetings and the sleepover. What is that if nor compromise?

Plus the OP becoming a full on leader so her daughter is allowed to fully participate at Rainbows is NOT inclusion.

If my son's school said to me they wouldn't take him on a school trip because of his disability or unless I attended they would be breaking the law.

I can see why you think it doesn't make sense grumbleina but does it make any sense that a parent would happily send their child off on a sleepover if they thought there was a significant risk to her health?

I agree compromise, quite often parents volunteering is the way forward not sharing the issue on fb. In the end the issue will be resolved but there will b a lot of negativity bad feeling and a loss of goodwill from leaders, which is a great pity

Itis, I ask you who you think a lot of the leaders are. Possibly people like myself who give the time to offer the opportunity to others. I receive no pay. We have families and responsibilities.

Unstable diabetes does require a lot of care. The child I spoke about has a pump. There is still a lot involved in their care.

I think we should here the other side before judging one way or another.

I am baffled by the continual insistance that excluding someone with a disability is ok if done so by an unpaid volunteer. I KNOW who volunteers are, I KNOW how much time they give up, I KNOW they are unpaid, I KNOW they have other responsibilities BUT honestly? I don't care about that in this situation I really don't. Doesn't mean I don't have respect for what leaders do just means I don't think an organisation as large as the Girl Guides should be ok with excluding disabled children from their groups.

I ask you Frosty what sort of parent do you think the OP is? Maybe the OP is lying, her DD's diabetes is extremely unstable and she is at high risk of something dreadful happening whilst in someone else's care and the OP has no intention of providing any assistance during the sleepover and couldn't give a toss what happens to her dd whilst away?

A pragmatic approach is what is needed not legal action as the way a solution is achieved is important

I certainly would not send DD on a sleepover if I was not 100% happy that she would be ok.

When someone actually has a conversation with us about what our DD would require, then we can discuss her needs. However, no one has yet asked anything about her Diabetes and how it impacts on her as an individual!

DD had a couple of hypos and a couple of hypers when she very first started back in January. We sought advice from her specialist nurse and adjusted things, and there has been no problem since during meetings.

One day, I would consider being a leader. However, our other child is also disabled and requires a lot of care. It is not possible at this point in time.

I'm sure the op is a good parent, but as I say I'd like to hear both sides.

In this situation she has taken to social media to put her side across, all we are hearing is how her daughter has been wronged, the guiders in question have not had an opportunity to have their say.

I agree Tron123 but that requires HQ to actually fully respond to the OP's complaint which they don't seem to be willing to do, which is disapointing. Open communication would be a much more productive way of moving forward.

Please remember though that the OP is a parent with her a little girl and she is probably feeling hurt and angry. Imagine being told a meeting was cancelled and then driving by and seeing it had not been cancelled and it was just a lie to keep your 6 year old child away? I would imagine that was quite a heart breaking moment for the OP and it isn't easy to be pragmatic when we feel so hurt and angry.

Otis, I understand that. Imagine your child being excluded from an 11th birthday/leavers party. The whole year went apart from your asd daughter, she had to watch her friends from her bedroom window at the venue 10 doors down. So I understand exclusion due to disability.

Frostyyspecs

My son has asd just the thought of him being in that sort of situation puts a lump in my throat and I'm sorry some thoughtless bastard thought it was ok to do that to your dd.

You are right we do only have one side of the story but I am willing to take the OP at face value as I see no reason not to at this point. Plus it raises discussion about the wider issue of disability and inclusion and I think that is important.

The situation now needs to be resolved with a pragmatic approach as the conflict is benefitting none of those involved

The point that stood out for me was the fact that op's dd's care needs are greater during the day! So why exclude her from the nighttime element?
The fact they haven't responded at all is despicable. Social media is a very effective tool for highlighting discrimination and I don't blame the op at all.

I don't see any moral issue with using social media either. Usually the first thing people advise on MN when they have been treated badly by a company is to Tweet them or publicly name and shame. I doubt it would have got this far if GGHQ were openly communicating with the OP.

To be honest, I am actually really calm now. I wasn't last week when the meeting took place - but even then, I didn't go in and say anything to the leaders. I simply drove home.

However, I am feeling ignored rather than anything else.
As itis says, communication would be appreciated.
We were promised responses twice this week, and we still have nothing.

There are so many things we would like to understand and have answers to. We would like to be able to actually say what care our DD needs, instead of assumptions being made. We would like to see if there are any solutions at all.

We have been patient, but we have waited long enough now. It has been nearly 3 months.

I agree totally that it does need to be addressed.

Asd is becoming easier to understand for others and coping strategies by people to include them.

Thankfully diabetes treatments are getting better and it is easier to control. However in this case the op is not dbs checked so cant stay over.As others have said if she was a casual volunteer (always welcome, we run on minimum volunteers, I can never be ill one day a week) she possibly have been a helper and stayed over and the issue could've been avoided.

I'm a Rainbow leader, run a unit as sole leader with a (different each week) parent helper. I also happen to be type 1 diabetic on a pump myself. I would have no hesitation in including OP's DD in trips and meetings, and frankly am horrified at the apparent (lack of) response so far from HQ.

OP, someone mentioned elsewhere that the County Commissioner is the leader running the Rainbows unit, do you know if that's correct? If so, I'm doubly horrified.

"I'm fully into inclusion but..."

"I'm not racist/homophobic but..."

Can't you see it?

Our kids are every bit as important as yours.

-An overnight venue with beds has insurance about the number of heads that can sleep in it.... Maybe mum staying over would have broken insurance
-Adults that attends an overnight need to have a CRB, no negotiation on this
-OP keeps making reference to daughter being better at night... I believe you (I really do) but... I would not be comfortable if I was your daughters' leader, I really wouldn't. An unfamiliar place at night time is a huge deal for young children - add on top the possibility of something happening and, because I would care about the safety and well-being of your daughter, I would not feel confident in my abilities to take care of her. Everything tends to be far scarier at night - something that can be handled easily in the daytime is more of a deal at nighttime. And for those that say "but the mum would not lie about her daughter's health, so the leaders obviously knew she was much better at night time...", I am sure OP is a decent person, but I have had numerous occasions of parents edit the truth about childrens' health concerns so I wouldn't be jumping to believe her, especially if there had been issues at the unit (however far in the past).
-HQ are notoriously bad at replying/following things through. They have moved again and it is also December (also known as a busy month). I would suggest that you (or get a third party if you prefer) to phone them up and be pleasantly firm in reminding them that they owe you a response (of whatever nature) and stay on the phone until they have dealt with you/your third party.
-My eldest is a Rainbow. She has never been away on a sleepover with them. Her friend's unit sleeps over twice a year. When I enquired the leader told me the thought of dealing with little girls at night terrifies her - I understand, I run Guides but I could not deal with multiple 5/6 year olds at night time. Daughter has had a sleepover with 3 friends once before. Never again! Anyway, sleepovers are an extra that some leaders choose to give. Yes, everyone should be included and allowances made and dealt with appropriately - but you describe it as the achievement of Rainbows. It is not.

I think this situation has obviously been handled incredibly badly, the incident with the meeting cancelled/not cancelled is awful the way you describe.

Can I ask what you would like the outcome to be? Do you even want your daughter to spend anymore time with the leaders given how you perceive to have been treated?

I am trying to use as unbiased vocabulary as possible as, as I am sure you can understand, this is only one side of the story - it might be the right side and it might be telling the full story - but we do not know and should try to refrain from making emotive remarks to as to help the OP as rationally as possible.

That poor volunteer leader. Poor volunteer? really? She is discriminating against a child. Sorry, but I have no sympathy for those who are not inclined to change their ways/routines to accommodate a disabled person, let alone child.

I volunteer, and we do see some disabled people. One of which was unable to access our premises due to lack of wheelchair access at the public access point (landlord won't let us modify premises - thankfully we are moving soon), this was easily solved by another VOLUNTEER using her initiative and asking the carer to take the client to the staff entrance, where we let them in.

No exclusion needed, just common sense & a want to help all those who are entitled to access our service.

As soon as this made it to facebook, op lost the higher ground, did she? What about all the cases on here where people are told to access facebook & twitter in order to resolve a complaint? On every supermarket delivery-gone-wrong thread the op is told to contact twitter/facebook. And that is for food...but it isn't acceptable when people are discriminating against as disabled child?

What if this was an educational class for adults & a disabled person was denied access to the service? Would it still be 'poor course leader'

How would people feel if the child's school was saying she couldn't attend a day out? Would that be OK too? Or different because they are paid for their work?

People won't want to put themselves at risk of official complaints and public accusations. It is quite easy not to do that, though!! The leaders have made no effort in meeting op half way re her daughters care, perhaps if they had, op wouldn't be here.

Nobody would be at risk of complaints and/or accusations if they behaved like decent human beings. Why would anyone be so unkind to leave a child out in this way to the point they would lie about a meeting being cancelled? Here here!

Twinkle, I am so very sorry for the situation you and your daughter are dealing with. It is very difficult to believe in 2014, we are still facing this type of discrimination. Children of all abilities should have access to Rainbow activities. You are giving your little girl such a gift by standing up for her right to be included in every way. Get your message out on FaceBook or local news or billboards, do whatever you must to correct the situation! Sending you hugs...