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

Some good charities in that list, but I agree it would be good to know more. And yes, more support for disabled adults.

The provision just seems to decrease the older the young person gets. Pre-school services weren't great here, but starting school lots of help fell away (OT, SALT, Physio... essential services) . God knows what it will like once dd is an adult...

Yes.

I think it's a great idea.
I'm just surprised more charities haven't come forward or been included in this.

Yes, although I absolutely agree with the points made by Poltergoose and zzzzz. I can look out for and fight for my son's best interests now, but I lay awake at night worrying about what will happen when he is an adult. I don't have the money to put away to make sure he will be looked after if he can no longer live at home. Where I live, they're already slashing the adult social care budget (and, to be honest, the SEND budget) and I don't like to think of what will happen in the future.

Yes please

Yes, although like others I'm concerned that this is another campaign that is just for children. I have 5 children between the ages of 2 and 10 and have noticed a decline in services offered as they get older. I worry about what will happen when my children become adults, especially when I'm not here to help them.

As a young adult with aspergers syndrome, I agree that there needs to be a greater focus on adults too- after all, a disabled child will soon become a disabled adult! There's often little to no help available once you're past school age.

Yes from me

Yes form me too

*from

Yes!

It's a yes from me. But second what PolterGoose said. I work in adult social care and it has serious problems. I would hesitate to put a family member into the care system at the moment, but I have an adult brother with Autism and know he needs to become more independent before my parents are too old to support him. I am more concerned about his care than my possibly ASD sons.

Yes. I've been fighting to get my son a decent education since Reception and he's soon to go into year 9. I know I'm not the only one.

Yes please xxxxx

As a parent of a disabled child, it's a definite yes from me!

Yes from me - but agree with many points above about support as these children become young adults with ongoing needs.

Please though lets not allow this to be just a campaign about awareness but one that actually translates into real change for our children and for us as carers. What carers need is for the necessary support (such as local authorities re school/EHCP) to be there, not a system to navigate, fight and plead for in order to get even a fraction of the help our children need.

Yes. By being part of the partnership, there will hopefully be opportunity to influence the scope of the project that hasn't already been decided.
These are credible charities, and I hope that there will be a policy of inclusion amongst the group, ie involvement from all parties, not just the big cheeses, and from children and young adults with disabilities as well as their families/Carers.

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

Usually I would say yes but since this has nothing to do with where I live I think no, the TIMC campaign worked better. Also I second the concerns regarding child to adult progression and the lack of focus around the issue.

does my (Scottish) opinion matter if it's only going to be an English campaign?

X-post Viper. Indeed.

It's an English thing? Well that's me out too then

This has made me very grumpy Lonny & Beyond, am off to do something else instead. First though can I ask HQ that you please change the title to -

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

Just to be clear please, thanks loads.

Not sure what form this campaign will take and what will be the outcome. I would certainly endorse any kind of support for disabled children AND their families. I know from a personal point of view, a portal of charities that could help would be beneficial. Eg put in child's age, diagnosis and postcode and relevant services could be returned. Agree with others that a campaign could extend to all citizens with disabilities.

Big yes from me