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MNHQ here: should Mumsnet sign up as a member of a new campaign on children with disabilities?

20 replies

RowanMumsnet · 09/08/2016 09:32

Hello

Mumsnet's been asked whether we want to sign up long-term as a supporter of the newly launched Disabled Children's Partnership. So, as ever with these things, we said we'd ask what our users thought.

Here's what the DCP has to say about itself:

"The Disabled Children’s Partnership (DCP) is an exciting new collaboration between 25 disability and children’s charities (listed below). As charities we have come together in the shared belief that health and social care services can and must be better if disabled children, young people and families are to get the support they need to enhance their life chances. The partnership was founded in 2015 to build on the excellent work of the Every Disabled Child Matters campaign."

"The partnership will work with disabled young people and their families to launch a major new campaign in England in 2017. The campaign will set out to challenge the political status quo and proactively raise the profile of the challenges that so many disabled children, young people and families face."

"The concerns, experiences and stories of disabled children, young people and their families will be at the forefront of the campaign, and therefore need to shape its development."

"Members Steering Group
· Action for Children
· Contact a Family (Chair)
· Mencap (Secretariat)
· National Autistic Society
· National Children’s Bureau
· Sense (Treasurer)
· Scope
· The Children’s Trust
· The Family Fund
· Together for Short Lives
· Well Child
Supporters
· Carers UK
· Carers Trust
· NDCS
· Ambitious About Autism
· Disability Challengers
· Working Families
· Whizz Kids
· Family and Childcare Trust
· Blind Children UK
· Rainbow Trust
· I CAN
· The Communications Trust
· The Seashell Trust"

We here at MNHQ think this looks like a good way to maximise campaigning impact on health and social care issues - but of course as ever we want to know what you think, so please do tell us whether you think we should sign up.

Thanks

RowanMumsnet · 11/08/2016 14:32

Hello all

Stand by for a long post (possibly make some Brew first...)

Thanks so much for all your comments. We'll try to answer some of your queries here, but (as we don't by any means know all the answers!) we'll also ask the Disabled Children's Partnership if they can address some of them as well.

The decision about whether Mumsnet joins up is absolutely down to MNers - but here's our reasoning for why we think it would be a good idea. We (MNHQ) think that this is a good, potentially powerful coalition of relevant organisations; the conventional wisdom (which of course you don't have to accept!) is that its predecessor, Every Disabled Child Matters, did a good job in tough circumstances.

Issues to do with provision of health and social care to disabled children and young people are pretty complex and technical, involving a host of governmental and quasi-governmental actors and lots of specialist agencies. We think that Mumsnet's chances of affecting those processes would be greater if we were part of an umbrella body of this kind, rather than a lone voice on the outside.

But as ever we'll be guided by you (FWIW we think the balance so far is strongly in favour)

Now on to your specific queries:

@mmchocolate

It sounds wonderful but what will they actually do?

The overall aim is to 'challenge the political status quo and proactively raise the profile of the challenges that so many disabled children, young people and families face'. Member bodies are currently drawing up more detailed plans for exactly how they plan to do this - I will ask the DCP whether there's some detail they can add now.

@Samcro

can I ask if this will be just about children. or will it include adults?

Good q - as others have noted, there are lots of mentions of 'young people' but we don't know exactly how they're defining this: we will ask for their feedback on this one. We know it's a crucial aspect for lots of you.

@hazeyjane

MNHQ, do you have a link to anything online, so that we could read up about it? The only thing I could find seems to be a government initiative focusing on early years and children in care.

Does anyone know of campaigns looking at the needs of dependant disabled adults and their parent carers?

As far as we know, the only link online so far is the Ambitious About Autism one that some of you have already found - but we'll ask if there are more detailed documents online that you can have a look at. We'll also put out a general request about whether there's a different body focusing on the area you mention (would be a good one for MNHQ to know about too!)

@youarenotkiddingme

I agree about the adult care as stated above but would like to add my voice to say it would be great for focus to be placed on education as well.

We (MNHQ) did raise this point earlier with the Partnership; we'll ask them to share their reasoning re focusing on health and social care.

@Vipermisnomer

What about the rest of Britain? By ignoring Scotland, Wales and Ireland you are dismissing and insulting a huge proportion of MN presumably?

Again we'll ask the Partnership to explain their thinking on this: we suspect (as others have said) it's because so much of the provision now falls within the responsibilities of devolved governments, all of which have different policies, budgets and systems.

@MumsFlouncingOnASummerHoliday

I'm another one slightly concerned that there's a whole admin layer, possibly being rather well paid, sitting having meetings in lovely meeting venues over this when the grass routes physical on the ground support services are stretched to the absolute limits or have just ceased to exist.

Just want to be absolutely clear that MNHQ isn't (and wouldn't expect to be) paid for any time we put into this. We'll ask them to share what they can about their funding and any salaried officers, but so far it's definitely not our impression that there are plush offices and expensive awaydays!

Re a few questions about involving chidren/young people with disabilties and their parents directly: there are some plans to do this - we'll ask the Partnership if they can give more details.

Finally, thanks for all your comments re This Is My Child: it's not dead (although it is, to misquote Monty Python, resting a bit) and one of the reasons we thought signing up to the Disabled Children's Partnership would be a good idea is that we thought it might enable Mumsnet to achieve something more powerful/substantial (in terms of policy changes or attitudinal changes) in this area.

That said, we hear you re possibly developing TIMC and coming up with something that specifically addresses the needs of dependent adults with disabilities and their parent carers: it could be a really good way of developing TIMC, so we will definitely bear that in mind any maybe revisit it when we've got a bit more clarity on what the Disabled Children's Partnership will be focusing on.

FlissMumsnet · 14/08/2016 20:07

Massive thank you to everyone for all your ideas and comments - much appreciated. Keep them coming Flowers

RowanMumsnet · 18/08/2016 11:12

Hello

Obviously there are painful issues here and lots of strong feelings all round. Thanks very much to all who have expressed opinions either way on the issue of signing up to this campaign.

We're still keen to hear all views, so do please keep letting us know what you think. It being August, a few senior people are away at the moment and over the next couple of weeks, so as far as the Disabled Children's Partnership goes we will leave this thread running (and hopefully post up responses from the DCP to some of the questions raised earlier in the thread), and have a thorough review of sentiment early in September.

In terms of how MNHQ deals with reports of disablism: we should say for the record that (as KateMumsnet said in her post on the deleted thread) we at MNHQ do not think for a moment that autism is a 'lesser' disability or that some disabilities are more worthy of respect and consideration than others, and we're extremely sorry that anything we said led some of you to think otherwise.

For better or for worse (we think for better!) MN posters are a hugely wide and varied bunch. We all have areas in which our knowledge is imperfect and our understanding could be improved. As a rule, we believe that allowing people to ask genuine questions and start genuine debates is a critical and valuable function of Mumsnet - one which ultimately leads to better and deeper understanding and empathy all round.

For the record we felt (and still do) that the OPs of some of the threads under discussion here were genuine posters asking genuine questions, and their behaviour throughout the threads - up to and including apologising for any upset caused, and asking for threads to be removed because they were sorry for causing distress - was a long way from the behaviour of hateful goady fuckers.

If we ever have a sniff of an OP being a GF - if we ever believe that a poster is starting a discussion as a smokescreen for expressing or drawing out disablist views - the thread will be deleted and we're very happy to give disablism as the reason for deletion.

We know some of you disagree strongly with our interpretation of some of these recent threads and as ever we're genuinely sorry to be on the other side of an argument with you. As RebeccaMumsnet has said, these are some of the most difficult decisions we have to take and they cause more debate and head-scratching behind the scenes than you know!

All that said, when all the relevant bodies are back in the office after the school holidays we're sure this will be looked at in the round, and as ever we will want to know what you think.

In the meantime, please carry on discussion everything and anything you think is relevant here (and please do also keep letting us know your views about the campaign).

Thanks
MNHQ

RowanMumsnet · 18/08/2016 12:07

@BeyondLovesSweetDee

Thank you for responding, Kate. I've asked elsewhere, including on the deleted thread, but I'll stick it here too as its relevant to your post...

Re "As a rule, we believe that allowing people to ask genuine questions and start genuine debates is a critical and valuable function of Mumsnet" and "If we ever have a sniff of an OP being a GF - if we ever believe that a poster is starting a discussion as a smokescreen for expressing or drawing out disablist views - the thread will be deleted and we're very happy to give disablism as the reason for deletion."
Do you have a specific strategy for dealing with disingenuous questioning? Would it perhaps be beneficial to start from a point of it being a GF (if the question is hurtful to other posters) and having to prove otherwise, rather than the other way around?
I'm thinking aloud here, open to that idea being criticised :)

It's an interesting idea and we'll feed that back in when people sit down to have a think in September. At the moment, if we get lots of reports that does already ping something up our radar and make us take a second (third, fourth) look and ask for other opinions if we're unsure.

WRT disingenuous posting we have a few rules of thumb:

what can we see in their posting history (under this and other names) - do they have a record of doing this? Have they started a conversation along these lines before?

are they engaging with other users and other points of view on the thread? Do they seem to be taking alternative viewpoints on board? Have they posted an OP and then not responded to subsequent posts?

do they acknowledge or apologise if other posters are upset by something they've said?

RowanMumsnet · 18/08/2016 15:11

@SoupSpork

Previously this thread was tagged (pinned? Not sure on the lingo) to the top of aibu, has it been removed because of the recent comments, if so that seems a bit ridiculous to hide away the criticism

No it's not that - when we pin threads, we have to specify an end time for the pinning. So when I pinned this one on August 9th I specified 9am today as the end time - thinking (at the time!) that that would be a decent amount of time for everyone to see it, and also because I'm off on holiday tomorrow so won't be checking back in on it for the next couple of weeks (although other people in the team will be). There's quite a lot of pressure on the pinned slots so we need to keep the threads moving so that other new ones can get their moment in the sun.

@SoupSpork

Also how is diagnosis de hour still allow to stand in that previous thread Angry

I'm not up to speed on this one but we'll make sure this gets flagged to the people who are dealing with reports today.

@SoupSpork

Others have made their point much better then I will be able to so I will just repost a previous poster:

You've constantly dismissed people concerns regarding language and behaviour towards those with disabilities on the talk section and I find it laughable you now think you can represent them.

We're genuinely very sorry that you feel this way and we do note what you say.

RowanMumsnet · 18/08/2016 15:19

Update - the post referring to ASD as 'the diagnosis du jour' had actually not been reported to us!

We're removing it now.

RowanMumsnet · 18/08/2016 15:31

We haven't received it dee. Couple of other reports about other posts by the same user, but nothing about that one. (And none from you about this poster.)

Let us know if lots of you think you did report it though, as that would indicate something's up with our reports software

RowanMumsnet · 18/08/2016 15:37

You reported a different post by the same user fanjo, but not that particular post? According to our system anyway...

RowanMumsnet · 18/08/2016 15:48

We can't see any reports from you on this thread at all, Insan1ty - in fact none for a few weeks? Are there others you think you've reported?

RowanMumsnet · 18/08/2016 16:02

Beyond yep we got that one (of the OP).

Insanity we have got reports of yours from about three weeks ago, just not more recently - does that sound about right?

Fanjo did you say you've been having trouble with reports from your tablet?

We'll ask Tech to take a look to make sure we don't have a logjam in the system somewhere, just in case.

RowanMumsnet · 18/08/2016 16:04

Actually (says RebeccaMumsnet who thinks more laterally than I do) can you all please report your own most recent posts and we'll check whether they come through?

RowanMumsnet · 18/08/2016 16:19

Fab, thanks all

OK so far we have self-reported posts from Fanjo, Volleyball and Polter but not from SoupSpork. We will give it another 5 mins and then run around panicking call in the Tech guns

RowanMumsnet · 18/08/2016 16:20

Can you try again, Soup? Are you on a phone or a laptop/desktop?

RowanMumsnet · 18/08/2016 16:23

Got yours Beyond - thank you

RowanMumsnet · 18/08/2016 16:37

Got yours MrsFizzy, thank you

RowanMumsnet · 18/08/2016 16:56

Hmmm Insan1ty nothing from you, eeek. How long ago did you report? How are you using MN - app, desktop, mobile site? Did you get the reports acknowledgement screen that Dee posted a photo of a few posts ago?

RowanMumsnet · 18/08/2016 17:06

Ah, nothing from you either Spork. Are you using the app (lots of purple ;-)) or the mobile site, do you know? (Shove up a screenshot of what you're seeing if you're not sure)

RowanMumsnet · 18/08/2016 17:11

Achievement unlocked zzzzz thank you

RowanMumsnet · 18/08/2016 17:24

@SoupSpork

The mobile site not the app, it just hangs spinning on the circle thing that it does for posting too but never goes off it, this phone is old and slow though and has been dropped in the bath many times so Would not be surprised if it was an issue on my phone rather then mm !

Oh Sad that's a shame. But yes if you're getting the spinning wheel of doom, it probably does mean that the report hasn't been sent at all. We'll do some testing to make sure that reports from the mobile site are otherwise getting through.

(If there are things you'd like to report but the report function isn't working for you, please c+p the thread URL, the name of the poster who wrote the post you're reporting, and the date and time of the post you're reporting, into an email and send it to [email protected] - the team will forward it on to the right people.)

RowanMumsnet · 29/09/2016 14:06

Hello all

Thanks very much for all your input on this.

While the balance of votes was in favour of our joining the Disabled Children's Partnership, it's also really clear from the discussion that we at MNHQ don't have the sort of wholehearted support we'd like for signing up and that there were many strong objections - so for now we will not (and if we consider doing so in the future we will of course ask your opinion again).

We're sad and sorry that so many of you feel let down by some of the decision we've taken about reported posts and threads. We are committed to deleting disablist posts once they are reported to us, but obviously some of you disagree strongly with decisions that we've taken. We can only say that we will keep working towards a happier consensus all round, and that your input and views on that will always be hugely important to us.

Meanwhile, the Disabled Children's Partnership have come back with answers to some of the questions raised earlier on the thread: apologies for the delay in this (as you'll see, they don't have huge staff resources) but hopefully the info in there is useful to those of you who are interested, especially if you'd like to sign up as individuals or become involved as a representative.

Thanks
MNHQ


ANSWERS FROM THE DISABLED CHILDREN'S PARTNERSHIP

'It sounds wonderful but what will they actually do?'
The Disabled Children’s Partnership is the coming together of over 25 children and disability charities, who are working together to launch a new campaign for disabled children. With the support of disabled young people and their families we will be launching a campaign dedicated to raising awareness of the challenges that disabled children, young people and families face, as well as fighting to change policy at the top. We will be working with both the grassroots and the policy makers to help ensure that disabled children and young people are given the health and social care that they need. The campaign is in its early stages, and is yet to be developed – our broad goals give us direction, but the actions and strategy is going to be defined over the next few months.

'Will be just about children, or will it include adults?'
This campaign will be focused on children’s services, including transition, in terms of health and social care this usually means up to 18, although the framework of the children and families act applies up until 25. We haven’t agreed a strict age cut off, but there’s another campaigning alliance called Care and Support Alliance which campaigns on adult social care. A lot of DCP organisations are members of this too, so we will work with Care and Support Alliance, rather than try and duplicate what they do.

'Do you have a link to anything online, so that we could read up about it?'
Because we are in our very early stages (we don’t even have a campaign name yet) at this point there is nothing online beyond the mission statement. We are, however, currently in the process of setting up a ‘Reference Information Form’, so that anyone interested can sign up for newsletters and updates on the development of the campaign.

'Does anyone know of campaigns looking at the needs of dependant disabled adults and their parent carers?'
Try the Care and Support Alliance

'It would be great for focus to be placed on education as well.'
The Children and Family’s Act (2014) is very much focused on education. With this in mind, and also because there are a number of campaigns and lobby groups (e.g the Special Education Consortium) who are working on education, the DCP feels that the most pressing issue at the moment is filling the void of health and social care for disabled children.

'What about the rest of Britain? I'm in Scotland so this is nothing to do with me.'
Because of the different systems that operate in each country across the UK, we don’t have enough resource to properly plan a campaign in all four nations at this point. However, we will revisit this and may be able to extend in due course. We will share any work developed with teams/organisations in the nations if it would help them take forward campaigning there.

'I'm slightly concerned that there's a whole admin layer here, possibly being rather well paid, sitting having meetings in lovely venues when the grassroots on-the-ground support services are stretched to the absolute limits.'
We have one person employed to work directly for the DCP, who works part-time and is on an assistant’s wage. This comes from a small pool of money contributed by the member organisations, which is being used to pay for the set-up of the campaign. As far as possible, we are going to be using the charities’ staff’s expertise, and are doing so on a low budget.

We are in process of setting up a Campaign Development Group, which will be made up entirely of family member/carers. They will be helping to shape the campaign up until launch, and possibly beyond. We are also going to be working with existing groups of disabled young people, who will advise on some of our decisions. There will also be the ‘Reference Information Group’ for those who are interested in the campaign’s development but less able to commit time to shaping it.

Watch this thread for updates

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