Pilot online 'clinic' with the charity KIDS: keen to hear your thoughts

[RowanMumsnet]

Hello,

We've been having a think about how we at MNHQ could add something extra to the amazing support and advice that the MN Special Needs posters offer each other. One idea is to have monthly online 'clinics' with staff members (who are also parents of disabled children) from the charity KIDS, which is one of the organisations that supports our ongoing campaign on respite care/short breaks.

We wanted to sound you out about how this might work, what would be helpful, and what sorts of topics you'd like to see covered.

We need to emphasise that this would in no way be a substitute for the extraordinary peer-to-peer advice on the SN boards; the idea is to complement what you (collectively) do with a slot (which could be regular) featuring KIDS staff. We know that many if you find peer-to-peer support to be the most useful form of support, but we thought it might be interesting to get input from the professional side too. Posters would be welcome (and encouraged) to enter into the conversations with the KIDS staff members.

We'd be really grateful for any feedback. We aren't sure whether it would be best to have a particular topic for each 'clinic' or whether to have a general open session (at least to start), so we'd love to know what you think about that; and if you think specific topics would be better, do please let us know what you'd like covered.

(As you can probably tell from our quote marks, we're also not sure whether 'clinic' is the right word for this, so please feel free to suggest alternatives - 'advice service'?)

Thanks,
MNHQ

The point though, is that it doesn't make any difference to the way I am treated by the LA. There are Lawyers here, Teachers, SALTS, SWs. The only thing that is different is that our anger is increased because we know the difference between services received and how they 'should' be received and how they are portrayed to be received.

Thanks Kevin, sorry I popped offline whilst you were still online to work within my voluntary role! Thanks for that bit re direct payments for parental support services, I've missed that and will find it and make my request for a direct payment for parent partnership services!

Not for the first time I agree with star's last post, particularly this bit

The only thing that is different is that our anger is increased because we know the difference between services received and how they 'should' be received and how they are portrayed to be received.

Hello again,

Just a quick note to let you know that we hope to have an update for you on Wednesday or Thursday.

Thanks,
MNHQ

I just wanted to say that Kids seem to be doing good work in our area. Its all a bit new and I think they are still finding their feet and working out hat is most needed. Our LA formerly had a very narrow view of disability and there was little or no support for children with developmental disabilities (such as learning disability or autism). There was literally no one to support parents- and a very hostile LA. In the last couple of years that has changed. There are courses to help parents manage for instance challenging behaviours and the emotional reality of sn parenting, and part time staff to asist with all sorts of things from filling in forms to setting up meetings and listening. Ds had a lovely family play session in a soft play place ( we enjoyed it too) - just up his alley organised by kids and there are several inclusive activities (sailing, gokarting) on offer later in the year. Frankly I wish they had been there 12 years ago!!

Hello again (please don't all drown at once )

Thanks again for all the input and ideas; it has been enormously useful for us. We've had time to mull it all over now, and, after reflecting on your comments and suggestions, we think the best way forward is to trial a support session. We fully acknowledge that the kind of sessions we've been discussing wouldn't be able to address all the needs identified on this thread, but we hope that they would be able to address some of them. We will aim to shape things in response to your ongoing feedback, so that, if the sessions continue post-trial, they'll become more useful and tailored to your needs over time. Of course, the usual support from the SN boards and posters will remain invaluable.

We'll hold the trial session in a newly-created 'support sessions' topic within the SN board, so that those who really dislike the idea can hide the thread. The plan is to hold it on a weekday evening, possibly a Wednesday (do let us know whether that sounds convenient), and it will be closely monitored to keep it on-topic and to ensure that it's not hijacked by discussions about welfare reforms, disability benefits, P&T parking and so on. If there are questions that the KIDS staff can't address at the time of the session, they will try to come back with answers later on in the week.

Kevin is just seeing which KIDS staff members might be available before we make a final decision about dates and which topic to go for.

Thanks,
MNHQ

I don't think anyone knows how dps for education will work. I would expect them be very tightly controlled by LAs not provide anything like the parental choice they are supposed to.

From what I can see, success criteria hasn't even been defined by the government and I sure as hell don't expect LAs to define it given then don't for pretty much anything else to do with provision.

Oh how I wish someone would come on this site and say - we're a charity, we're sick of kids with disabilities and their parents being treated like utter rubbish, come campaign with us for real change.

Come tell us your horror stories and how you've had to support each other.

Come tell us how the same systemic dysfunctions destroy your lives no matter where you live in the country.

Come share your ideas for genuine root and branch reform which puts the child at the centre of this broken matrix.

We'll throw our weight behind a platform which demands that children with disabilities are not discriminated against, are not pitied or 'allowed' to be included on someone else's terms. We'll demand that services SKILL children and not babysit them or pump out the same generic crap to every kid they meet (or fail to meet). We won't use your sad little children's faces and tell everyone (Children in Need style) how great we are cos we help these poor buggers and their parents. We want to change the status quo and not be part of it.

But you see, campaigning in this way doesn't help fundraising does it? No one wants to put money in a box for empowering children with disabilities Campaigning like this doesn't get you local authority contracts or a seat at the table when reforms are discussed or important patrons and so on.....

We're tired on this board. We fight daily. We help each other as best we can.

I want CHANGE not advice - Mumsnet throw your muscle in behind that. We have plenty of ideas. If you can do get moving because of some slightly distasteful girls' underwear, why not do it for those being dumped on big style by a system built of deceit and poor outcomes.

joins in the clapping for appropriately trained and throws in the suggestion that we form the campaign ourselves, perhaps set up a limited company in order to organise ourselves and recruit advisers and supporters for other parents like us. We could call it something like TIPS (Truly Independent Parental Support) because whatever the rhetoric spouted out I think this is what we all really need.

I have to say I don't get all that talk of hijacking, if it's a support for parents shouldn't we decide what the topic should be?

here it is here it is how do you do!

any plans yet for follow through MNHQ?

Hello

Sorry about the long silence; things have been a bit frantic here (as ever). We hope to have something definitive to say in the next 10 days or so.

tiredoffightingwithjelly Just to clear up the point about hijacking: when we say that the sessions are going to be closely moderated to prevent hijacking, we're not talking about posters disagreeing (politely, of course ) with the KIDS staff member's points, or going off at tangents; those things are fine, as they've always been. We're talking about people using the sessions to start debates about things like disability benefits - the kind of 'my neighbour gets DLA and yet just last week I saw her hanging the washing out'-style threads that have been causing a lot of angst across Talk over the last couple of months. We really just wanted to make it clear that, although the sessions will be stickied in Active and thus visible to everyone on Talk, we will make sure that posters who want to use them for advice and support are not subjected to lots of slightly irrelevant and bad-tempered argument about benefits and entitlements.

As to campaigns around SN; thanks, as always, for the suggestions. This online support session isn't intended as a substitute for campaigning, and we will continue to work closely with Every Disabled Child Matters and other partners to try to change things for the better.

Thanks
MNHQ

Hope I am always polite MNHQ even when really really fed up but thanks for clarifying, I really think I have a bit of a hang up about hijacking, I'm so scared I might do so without meaning to, bit wet aren't I!!