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

[RowanMumsnet]

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

Another who would like more information about this first, particularly on its precise aims and on how people with disabilities will be included and have their views sought. There's some notable omissions from that list if it's just yet another awareness-raiser.

If it's trying to actually change or enforce legislation then there's good reason to be England-only as provision and requirements in Scotland and NI will be very different (don't know about Wales) - hopefully the charities involved will poke their Scottish etc arms or equivalents to unite in similar fashion.

What happened to MN's TIMC campaign? It seems to have died. A commitment from MN to address posts that are so factually incorrect or wilfully ignorant that they contribute to disability would be good, perhaps with a FAQ that could be pointed t?.

Easy to say yes as we all want something better but I would like to know a bit more specifically what the objectives are and how MN would "help" to actually achieve anything.

My three concerns are:

1 - the child to adult problem. It gets harder as they get older and there is no help

2 - the co-ordination aspect. I would like to set up a single point of contact and get a key-worker assigned to each child whose job it is to get stuff done. At the moment parents, who are exhausted doing the caring, have to educate themselves fast and fight with everyone from schools to GPs to hospitals to a myriad of SS people - none of whom talk to each other.

3- There is money there it is just wasted. There is "support" in the touchy-feely way. There is "awareness" but it is real, concrete help we need. Who do I call and what can they do for me???

So - YES probably but it needs to be focussed

YES!

questions though.....

What age group? I hope its kids andadults, as a poster said, our kids grow up but their disabilities don't go.(the disabilities may get worse).

I hope this will be all be shown and brought up at parliament frequently, and other media like the news channels and newspapers too.

ZZZZZZZZZ I hear you.

and Chikara totes agree.

Its an impressive list of charities.
I propose that if it gets off the ground each charity sends as their delegate to the meetings someone who is either disabled or the mother of a child with disability.
.....and pay them the same as other professionals are paid for their insight and experience

and this ^^

3rd post in a row!!!

HQ can I draw yr attention to this thread below too please?

www.mumsnet.com/Talk/_chat/2703546-PIP-for-Autistic-Son?

Yes , definitely.

As a parent of a child with long term mental health difficultirs who has recently been assessed and accepted for disability grants (etc) I would like to see representation of and for children with mental illnesses.

Short answer is yes but want to echo others

1. really should have disabled represented on the group

2. it should be national (all of the U.K.)

3. needs to be for adults and children (I have one of each and as others have said it is as though it is believed the disability disappears when you become an adult)

Finally be open and transparent it what they do/spend in the name of the disabled

Yes absolutely, very important issue, especially in the current political climate

Fanjo, I just thought this campaign had been done already with the here is my child campaign.....

Mumsnet have charities on their backs all the time so they need to think carefully about which ones they support

I had missed the England bit. It should be UK wide.

The thread that Becker linked to sums up a lot of what has been said above.

Also second what others have said about disabled people being part of the process rather than overpaid charity workers and spokespeople.

It could be really, really good - it could make a difference - if it is done right.

How would MN use their power?? What would/could MN actually do?

A mental health awareness campaign would be good.

I definitely think Mumsnet should do this. I do agree with others that this should be a UK wide campaign. I also agree with others that we should include adults too. I would like to know more. What is the purpose? Awareness raising? Influence policy?

Shrunken head "Mumsnet have charities on their backs all the time" what do you mean?

Hello all

Stand by for a long post (possibly make some 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.

Thanks Rowan. Some posts need to be long.

Thanks Rowan. It sounds good. Given that the list of charities includes National organisations, it would be beneficial to see this UK wide.

Thanks, Rowan. I think, from my own experience, that you're always better to be 'inside the tent' on these issues. Perhaps there are things about the coalition that would be better developed in different ways - or more forcefully - but MN's chances of doing that as an outsider might be limited in the extreme.

Might I ask how MNHQ would envisage actively involving MNers, though? It would be unfortunate if it ended up being one MN staff representative who simply went along for a monthly meeting and received occasional papers.

Thanks for the update MN. I look forward to hearing more and agree with the poster who said it's usually better to be inside the tent to influence such things. It would be vital though to gather views from many posters though before meetings etc.

Thanks for raising this and for your response Rowan.

It seems generally a positive thing to me - to get a wide diversity of different charities and organisations working more closely in partnership - and having a more united voice to advocate for and hopefully provide real increased support for children and their families living with disability.

As ever though I'm impressed by the incisiveness with which MNer (mother vipers) have cut through the related issues to raise a number of very pertinent points.

I hope those at HQ will continue to sift through the thread carefully to consider them all.

It's a yes from me too😄

So nothing about mental health, Rowen? Why is MH being left out? It doesn't help anyone to treat mental illness as a separate issue.

Another excellent point Peace