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

Yes defo.

Yes.

Deffo!

Definitely

And talking about costs of care and provision it would be great to educate people about the real costs of caring for a disabled child.

So many think "well you get dla, extra cycle, carers" or whatever. But I know from my personal experience and from that of other posters it doesn't cover the loss of wages/ income of parents could work.

There are real costs involved from hospital parking, specialist clothing, specialist support, professional reports and loss of wages for being out of work or not working

Yes. anything that raises awareness is good. If it actually changes outcomes it would be even better.
I agree there needs to be a focus on adults with disabilities too

Yes

Yep!

I am a recent member with a disability and I have been of the belief that mumsnet needed to improve its approach to disability and disablism on the boards - so this can only be a good step forward.

In principle it's a definite Yes, however more information would be useful.
I think opinions on previous posts could be brought to the table by MN in order to acknowledge real concerns from parents. My only concern would be that donated money is used efficiently, I would hate to think it becomes a scenario of meetings about meetings; MN could try to ensure this isn't the case 😀

Just to add that some kind of educational awareness in the public arena especially would be hugely beneficial. Worst offenders are government not providing blue badges to those with no traffic safety awareness and NHS facilities do not cater for those with learning disabilities. The very organisations you would think would understand the most!!

Yes, but my DS2 is nearly 17 and has grown up while I've been on MN, so please don't forget adults and young adults whose need for support doesn't go away at 18 or 25.

I have a disabled son and I'd like any action that reduced the stigma of disability and actually talked about disability as a positive thing. Disabled people are talked about not too, they are treated as burdens rather than the joyful children/adults they are or can be if barrier are removed. Language is often negative and associated with something going wrong. My son was born with a disability but he was born bloody perfect. He needs some medical assistance but other the that he's free to live the best life possible.

Yes to bb message, if you are under two you can't have a blue badge and there's nothing that allows you go have a temporary blue badge either. My son will have an operation on his second birthday which will see him in plaster over all limbs. It'd be nice if the Welsh Government realised that it would make it easier for us to resume normal life if we can actually get out and use facilities that we wouldn't normally need but would find extremely useful at this time.

If theres a clear aim, common goal and set of targets then its a great idea.

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. Then again maybe thats just why we need the profile of issues to be raised and sometimes those admin type meetings are the way to get things done.

I sat in a local mental health consultation type meeting recently whilst a parent in tears explained how her child who'd made several attempts on her life didn't meet criteria for urgent mental health support because the attempts weren't successful!

Had she been successful then revived / critical she would have been further up the list for support.

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.

Yes particularly if the focus is on young adults. I was talking to someone at a residential centre today who was saying how horrified most parents of disabled kids are when they transition to adulthood because the services they are used to just stop. In our case nothing has ever started.

Also, can this proposed new campaign be run as an internet-based entity? That way, many more of us who cannot leave our kids/dependants to attend meetings to have our ideas heard could certainly have some direct input, as opposed to only being asked to donate and support by fundraising. A PP mentioned the costs of funding people travelling to and attending meetings to be borne by charity, I am also concerned that it doesn't turn into just another admin level having physical meetings about meetings, wasting funds that could be put to better use. There's no need for that waste of money if it's based online.

There is a huge knowledge-base among Mumsnet SN posters, we could draw their attention to areas that need support and provision for things that need changing e.g. supplying help for a person's individual needs rather than as at present only having the choice of an often expensive one size fits all package that you either get to accept or decline, I'm thinking of wetrooms here but I'm sure there are many more examples.

YES! Please, do

I agree with people's concerns. If it's an awareness campaign which just runs a series of adverts on daytime TV, then what's the point? How is the money go in to be spent? How will this umbrella steering committee actually put pressure in the government?

I also agree about including young people, especially as a lot of 18 year olds are still at school.

I thought mumsnet already had a disibility campaign going on...

A huge yes from me.

Shrunkenhead did you actually read about this campaign.

YES

I have serious reservations about mumsnet backing this campaign, there does not seem to be enough information. My main concern is that he majority of mumsnet users live all over the UK and I feel very uncomfortable about mumsnet backing this if it's focus is England only.

More information needed for me!

Oh I missed that.

Yes England only is not fair.