Here some suggested organisations that offer expert advice on SN.

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

(144 Posts)
RowanMumsnet (MNHQ) Thu 02-Feb-12 16:50:03

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

lisad123 Thu 02-Feb-12 17:24:11

to be honest i think i would want to know what they could offer first. Is it practical advice? We all live in different LA area's and so much depends on funding to what each family gets sad
I would only bother if it would useful advice and practical help, because tbh a listening ear is the one thing you certainly already get from the posters here smile

If they're brave enough then why not?

But I agree with Lisa that I'd like to know what we/they are hoping to get out of it.

Also, many of us here come here to 'hide' from professionals. The professionals who post and are accepted here have worked hard to earn their stripes and have a level of understanding about things that are quite beyond most professional organisations and charities as they keep up to date with research, policy guidelines and their own CPD.

What would happen if established professionals and charity professionals clashed?

But anyway, this particular charity offers a lot in my area and although I've never accessed their services I've been impressed. And I do actually feel that there is a benefit to getting some input/advice that is properly regulated occasionally.

Lisad, a listening ear from a 'body' might be helpful too.

WetAugust Thu 02-Feb-12 17:49:32

Would that be the same KIDZ that invited my severely anxious, agrophobic, autistic, hermit son to a disco as respite care?

bochead Thu 02-Feb-12 17:58:17

David Cameron is a patron. I have major issues with that.

Oh dear.

Look. Why don't we arrange a one-off, one-session pilot where we can ask questions directly about the set-up and mutual benefits?

Then it can go ahead depending on how scared they comfortable we are?

But anyway, thank you Rowan for thinking of us.

zzzzz Thu 02-Feb-12 18:41:12

I read this before my --living hell--school run. My initial reaction was discussion topics would be very dependant on the expertise on offer. If the staff of KIDS are parent volunteers then why not just post as themselves? If they are also high powered pediatricians or Therapists or policy makers then we'd need to know what there background was if they are posting as experts.
What are there ideas for the service? What gap are they trying to fill?

For example if you were to tell me that you had someone who had in depth knowledge of middle-secondary sn provision, both private and public, I would probably bite your hand off. What I don't need is the equivalent of a HV or a school nurse, who is reading from the same script, or who is going to point me towards websites they have googled.

The Charity mentioned doesn't operate in my area, so I have no idea how effective they are.

As said above one of the joys of mn-sn is the lack of professionals claiming to be experts because they read the chapter 3 of some noddy's guide years ago. We are not a happy clappy thank you for your time group. Our time is incredibly valuable and we have it wasted endlessly be useless unfocused services.

So after all that waffle grin like Lisa123 said "what could they offer?"

WetAugust Thu 02-Feb-12 18:53:11

I've checked. KIDS is a different charity to the KIDZ I was introduced to.

Could go it a go?

RowanMumsnet (MNHQ) Thu 02-Feb-12 19:04:00

Hello,

Thanks so much for all the input so far. I'm just the bottle-washer around here but we will come back with more info/answers shortly (possibly after the weekend) - in the meantime please keep it coming.

Thanks
MNHQ

Agree with zzzzzzz (never can remember how many z's and far too lazy to look).

We here between us KNOW the government policies, regulatory bodies, how to write letters, who to contact, where to get help, our MP's addresses, the latest pilot studies, where to get resources, what books to read etc.

We also know that much of what services have to offer is pie in the sky, unaccessible and totally pointless.

We also know that policies and criteria and accessibility rules very often only apply in written form but not in practice.

It would not help me to be told that if I'm struggling that all I need to do is apply for a carers assessment for respite to get direct payments for a few hours a week when the reality is that a carers assessment in our area gets you a patronising SW with many practised excuses as to why even though you fit their published criteria you cannot have anything as there are children more severe than your child and that if you carry on going on about how hard your life is they'll open a child protection file, and then proceed to write a report full of assumptions and inacuracies about how your DH doesn't help enough in the holidays because he is too busy doing research (he's a frigging university lecturer and gets 4 weeks holiday a year like most people).

I don't need someone to tell me to go to my local sure start centre to get support on ds' behavioural issues.

Or to have someone tell me to talk to my child and sing nursery rhymes to address his speech and language difficulties.

What I DO need is this:

Someone to confirm that I am not insane and that initiating the CP process is actually a fairly common and normal tactic of LAs when the parent appeals to tribunal.

Someone to acknowledge that I do in fact have more knowledge about ASD as applied to ds than any professional that has ever met him, and that having gone on 50 days worth of training in the last 2 years IS in fact relevant and substantial and qualifies me as at least an equal in deciding his provision.

Someone to agree that the LGO is a biased bunch of incompetents staffed by ex LA employees who have an axe to grind against parents.

Someone to acknowledge that abuse of disabled children in school by teaching staff does occur.

Someone to confirm that NHS agencies do in fact invent contact-time pretty much as standard and will spend their 'allowance' on collecting evidence against you personally or attending meetings about you in your ds' allocated time rather than working with the child.

Someone to acknowledge and agree that the SEN tribunal process is stacked heavily against parents and not the accessible and fair solution it pretends to be.

An agency that can acknowledge all that and support parents who have to deal with it is an agency worth it's weight in gold.

bochead Thu 02-Feb-12 19:29:41

Can't agree enough with Star, especially about how the system is pretty stacked against parents - even when our kids are abused.

"We here between us KNOW the government policies, regulatory bodies, how to write letters, who to contact, where to get help, our MP's addresses, the latest pilot studies, where to get resources, what books to read etc."

^Truth that!^

"As said above one of the joys of mn-sn is the lack of professionals claiming to be experts because they read the chapter 3 of some noddy's guide years ago. We are not a happy clappy thank you for your time group. Our time is incredibly valuable and we have it wasted endlessly by useless unfocused services"

I also agree with zzzzz.

Mumsnet is the only "safe space" a lot of us have & David Cameron has a pretty unappetising agenda.

justaboutisnowakiwi Thu 02-Feb-12 19:58:11

I want to stand up for KIDS here and say that if it worked it could be F***ing amazing.

Where we used to live the council outsourced disability services to KIDS and they were AWESOME. I had more help than you could imagine. they couldn't do enough for us. I have never identified the amazing disability support people I had on MN but these are the people I was always raving to you guys about.

I know it is easy to be cynical but in this case I really really think it is worth a shot.

I agree with you Justa. I think there could be value in it. I just not entirely certain what the plan is, or if they know for that matter.

Did you set this up then wink grin

coff33pot Thu 02-Feb-12 20:10:48

Looked at the site but as per usual nowhere near my area. Never is lol. Mind you I would be dubious if Cameron was involved anyhow with his false promises. That and if the South West only consists of Gloucershire obviously no one exists any further down the map lol To be honest no I wouldnt use it. The portage for children and what they do all looks great and no doubt would help newer mums in first steps, but they couldnt offer that on site here could they it would be a contact list for your area and then off you go. The other work they do is playcentres, parks etc which again is marvelous but not for us.

I would also be dubious to chat/post and reveal too much info unless it was a protected site.

It would be good is someone to FIGHT our little corner and supply good solid legal stratagies on how to do it and get the right result. And I cant see a cameron supported charity upsetting the appple cart for fear of losing support. But then again we already have that here with all the great support on this sn board smile

Another question would be would it be separate like this sn section or would it be open to the AIBU population...........

zzzzz Thu 02-Feb-12 20:13:35

Well that is a huge plug, as we all think that kiwi knows her stuff! grin

I think we need to hear exactly what is on offer?

I don't see myself as cynical at all, more wary! (or is it weary? grin )

coff33pot Thu 02-Feb-12 20:17:41

zzzzz I am both weary and wary! thats because we can multi task grin

Well I can be weary, wary and worry! grin

coff33pot Thu 02-Feb-12 20:21:49

show off!! <sulks at above smartass> grin

TheLightPassenger Thu 02-Feb-12 20:21:52

I think practical advice would be appreciated most. So if someone came on who had experience and knowledge of the more difficult behaviour issues (eg. school refusal, aggression) etc. And of course helping people who live in Kids areas access their services.

Yes, and system navigation perhaps. I mean in my LA (that KIDS must know well) there is no common pathway to provision and services. It is all a bit survival of the fitest and dependent on personnel employed by the LA at the time.

Our LA refuses Earlybird, Portage and pretty much any other outside early intervention package that might influence parents belief in the LA's inadequate and terrible provision. They carefully create their early support information packs to not include the more challenging support groups too.
(and KIDS was most definately left out of mine so who knows..........)

LOL, I just discovered that although they work in our LA, our LA isn't actually one of their LA partners.

Well now! Welcome! Pull up a chair. Help yourself to a brew. Sorry if I put you off with my questions..........

zzzzz Thu 02-Feb-12 21:06:56

weary, wary and worry grin

So there you have it, combat the 3W's and you will have some of the bravest funniest most belligerent women in the land ready to engage in rapid fire mn with brew and the occasional wine

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