Here are some suggested organisations that offer expert advice on SN.
Rainbows (Girl Guides) - all my daughter wants for Christmas is to be included in your organisation.(335 Posts)
MNHQ have commented on this thread.
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 have seen this on Fb, a friend who I think is a friend of yours shared it. I too have shared it and tweeted the guiding association.
I am appalled by their treatment of your daughter, it is shameful and I would expect better from the guiding association.
I hope these issues are resolved and you can find an inclusive guiding group, or maybe a scout group.
This group should be ashamed of themselves.
Firstly I am sorry that your daughter has been discrimated against. That is very very wrong.
However, there is not acknowledgment in your post at all that Girl guiding is a voluntary organisation and that the leader(s) you are maligning so public ally will be giving their time for free to allow at least 20 children to enjoy guiding.
I suspect your actions may well lead to the closure of the unit and thus end guiding for all. Have you volunteered to train to become a leader or investigated if other local units may be more receptive? I certainly have HCP friends who are leaders who would not be fazed on paper by your daughters medical condition but if her control is poor that may well present problems.
Habe you read the threads from guiders / scouters sick of being abused as free childcare?
You have every right to be upset but just remember that the people you are complaining about are volunteers and do this alongside vp everyday life. It is not their job and they do not get paid.
Do GirlGuiding have a local Special Needs expert who you could contact to "help" her leaders. We have one in Scouting who has helped us plan for children with additional needs- from dairy anaphylactic children to ASD.
I believe all children should have a chance to join in with Scouting/Guiding. I wish you and you daughter lots of luck.
They may volunteer and I am sure the op is massively grateful to them for that but the op has offered to help and yet they have ignored her and excluded her daughter.
Volunteer organizations still need to adhere to disability levies and an organization as big as the girl guides should know this and be able to do so.
Does your County have a special needs advisor? They'd be the best person to speak to, as they'd know the relevant training the leaders could do to help your DD.
I'm sure you appreciate that looking after your child is a big responsibility - looking after any child is, but one with two very serious health conditions even more so. And the leader is a volunteer, possibly with no other experience of these conditions.
But I am shocked they wouldn't allow you to come and help. Possibly this is due to a short time frame, and you would need a DBS from Girl Guiding in order to stay overnight. Though they could have just told you that, rather than make excuses.
I'm really disappointed by HQs response though. I can only hope that the time delay is them looking for a way to provide you with a satisfactory outcome. Potentially, they were also lied to about the leader being ill - HQ normally would not know about the running of individual meetings, so they must have got this information from somewhere.
I'm really sorry this has happened to your DD. Have you looked at moving her to another group in the area? Or even a Badger or Beaver group? I'd hate for her to leave GG because of this, but she deserves a group who can properly take care of her, and allow her the same opportunities as her peers.
If you start with the GGUK facebook page, there's a lot of leaders on there, who might help you find a more inclusive group.
Why don't you just go on the sleepover yourself and help out?
They're all volunteers, you know...
Flogging - OP said she wasn't allowed to go because there wasn't room
Your daughter was extended the invitation to attend during the day for the sleepover so there was some flex. You say your daughter needs help to manage her medication? Presumably you and your partner were trained to do this ? Presumably you were. Therefore in order for your daughter to attend the leaders will need to obtain the same training - another time commitment for an organisation which probably already demands quite a lot of their time and unless your hospital diabetic tema are really pulling out all the stops a commitment that might be difficult to schedule against their work commitments.
I know diabetic children who struggle to get teaching staff trained - and I that situation the staff have a much more formal remunerated responsibility to those children, can you not see that this is a huge ask for a voluntary organisation ?
I suspect, but do not know, there are issues with allowing you to stay for the whole event due to safeguarding (for the other participants) and whatever the current CRB regime is.
I really think that the the energy you have invested in this complaint (spying to see whether the meeting really went ahead, for example) would be better spent investigating if another local group would be happier to cater for your daughter or volunteering to become one of the leaders yourself.
Surely you can see that forcing leaders to try to take on a responsibility towards a diabetic child that they Re obviously uncomfortable with isn't going to end well? It doesn't reflect well on them and I'm not defending them.
I'm just asking you to channel your energies Ina direction which is likely to produce a sustainable solution for your daughter.
Floggingmolly it says in the op that they offered to stay etc but this was not acceptable.
Like 5Mad I saw this on FB from one of your friends.
My thoughts are contact some other local groups (I would head for Scouting rather than guiding, but that is because my kids have all had a brilliant time in scouting!) If you contact Scout HQ (Gilwell) they will be able to put you in touch with some local groups - also talk to other parents and see what their experiences have been.
Oh and the expectations if some parent wrt guiding are crazy,
One if the parents in my sister's unit told her deputy that she wanted my sister removed as a leader (which missed the point that the unit only existed because my sister who was already over committed with guides and rangers stepped in to save the unit from closure as the warranted leader).
The reason my sister needed to be removed - apparently her tattoos were not setting a good example to the girls.
The mother in question was quite surprised to be told that she either learnt to accept the tattoos or her daughter would no longer be welcome and one of the 50 children on then waiting list would get her place.
I'm a beaver leader and I would do everything I could to help a child who has additional needs to get the most of Scouting. I may not be confident with something like this but I would do my best to find a way to help.
I hope you can find a resolution (or come to Scouts, we're the best! )
If you read the blog the child's needs are actually more during the day, so it makes no sense to say they can have her during the day but not overnight.
lurker the parents at that unit sound ridiculous re the tattoos. But the op is not asking for anything outrageous, she is asking that they are inclusive, that they follow equalities legislation and do what many other guide and scout groups already do.
It is not ok to exclude a child due to their medical needs.
Voluntary organisations are still obliged to make reasonable adjustments for disability.
Our local scout group has gone over and above to support inclusion of DS1 and DD. We as parents support them in any way possible which if you read in the OP's blog these parents are prepared to do too.
It's the complete inflexibility here that makes me angry. Hoping for a satisfactory outcome for you, OP.
OP, what exactly would someone caring for your child need to do in practical terms?
For the most part these conditions no longer spell the end of normal life for any child - many many children are able to manage them perfectly well without being held up as some sort of 'disabled pariah'.
Learning how to care for your child's conditions is no harder than learning what to do if someone is choking - which is also life-threatening. Personally I think this sort of care should be included in the training they get anyway.
Unless we're seriously expecting children with diabetes to live in supported housing for their entire lives, at some point before adulthood they'll be managing their own health anyway. How will they learn how to do that if they're constantly denied the chance to live normally and do the same normal things other kids do?
I really feel for her OP - inclusion is the responsibility of everyone - voluntary or not.
Your Rainbows sounds absolutely dreadful. My son has coeliac disease and has been a Beaver for over a year. They are amazing - they always consider his needs. At last year's camp (which he only attended for the day because he didn't want to sleep over) they made the meal for EVERYONE gluten-free (chilli and rice). If they're not sure about anything, they ask my advice.
It is completely not acceptable to exclude a child for their medical condition. Doesn't matter if it's a voluntary organisation. If they don't know how to manage it, then they can talk to you and find out.
The people running the groups may be volunteers, but what about the fact that GGHQ appear to be ignoring their own complaints procedure, and that they lied about a meeting being cancelled? I find that very shocking personally.
We're currently setting up a unit and I hope we'd be able to include any child who wanted to join. I'd certainly hope that someone with something very manageable such as diabetes would be able to join in everything. Coeliac def shouldn't be an issue unless you are expecting everything they served at he Xmas do to be gluten free.
I also assume that you weren't expecting the leaders do monitor her blood sugar levels or inject her insulin?
I'd find another unit and offer to help on an occasional basis, then you get get your DBS check done (its free on for volunteers).
It is irrelevant that the leaders are volunteers. They sound dreadful if they think discriminating against a child with medical needs is acceptable, especially as the OP has offered to be nearby to facilitate her DDs inclusion.
Diabetes and Coeliac Disease are hardly unusual and the latter simply (!) involves careful meal planning and label reading. (as someone with gluten free friends and a wheat intolerance, I know it can involve careful planning but it isn't really hard)
I would be looking for a more friendly group.
I understand that this is upsetting and hope that your daughter finds a unit. However i do worry that some of the posts and the op are in danger of influencing the guider to give up, this will result in maybe one less unit and less girls having the opportunity to attend rainbows.
Tron122 It isn't simply "upsetting", it is discrimination. Do you think that is acceptable?
Join the discussion
Registering is free, easy, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.Register now »
Already registered? Log in with:
Please login first.