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

As one of the "professionals" bopping about this part of MN far too much, I think that one of the most pertinent points raised by this thread is that many parents are really, really tired of receiving cut-and-paste generic "I know best" advice based on flimsy textbook understanding of complex disorders.

I get the impression that if professionals were to usefully post on here in a regular "webchat" capacity, it needs not to be a "clinic" e.g. an expert-patient model, but a consultant-client one (I am thinking of private sector consultancy work here, not medical consultancy necessarily), where the client poses a problem and the "consultant" proposes a solution or gives a perspective that the parent-client can challenge and that the consultant should be knowledgeable enough and confident enough about to be able to defend/sell. It's not really about agreement/disagreement per se.. that can happen fruitfully, but pat answers don't go down well here, and for good reason. They are readily available elsewhere and a source of frustration and exhaustion for many of the regulars on this board.

I hope that makes sense.

I'm working tomorrow but really wanted to know what KIDS is all about really. What support do they offer, how is it accessed, do they only cover certain areas and what sort of training is given to staff.

And very well said working

What working said. (and that has to be her shortest post ever )

yay working

working spoke very well on behalf of many of us.

Friday before 1/2 term is a "transition" time for us, so I'm in school for the lunch period to help ensure the school/holiday change goes smoothly. As many asd/sen kids don't cope with change well this is traditionally a bad time for many of us in terms of organising any kind of meet up, online or IRL. First and last days of term should perhaps be noted for the future as times to avoid - especially the big summer/Xmas ones?

I 'might' make the end. If I can keep the kids quiet with munchies!

Hello; apologies, really, for the bad timing today; we will definitely take it on board that lunchtimes/ends of term are not good in general. Do midweek evenings (8pm-ish) sound do-able for most of you? Or, as others have said, mid-morning or mid-afternoon?

Yes. Evenings best as I am lucky to have another adult around at that time, but Peppa Pig can pretty much sort out the other times!

yes what working said :)

but also what Lisa said - who are they? What makes them 'experts'? What training, skills & experience do they have?

I had a look at the website (as far as I can tell they aren't active in my area), is it all about respite?

Agree with working about consultant/client model.

Also agree with reservations other posters have.

I?m Kevin (Williams) and zzzzz has asked for a profile so here is a little about me. I have one son who has severe autism. Peter cannot speak, understands a limited amount of simple language and has the obsessional behaviours associated with autism. Peter is the only disabled child I have ever cared for ? so I am not an expert on anyone ? except Peter! He is now grown up and has lived away from home for the last 13 years ? so my personal experiences are out of date in terms of what faces parents of disabled children today. However I remember all too well the experiences of exhaustion, frustration and delight that accompanied bringing up my son.

In my career I have always worked for charities ? but it was only 6 years ago that I started to work for a ?disability? charity. My role is to ensure that the charity uses the funds that we are given by both donors and the state to benefit disabled children and their families in the most effective way. KIDS is considered to be a medium sized charity. We employ a large number of staff ? over 1,000 but most are part time and many are themselves, like me, parents of disabled children.

I?ll finish off this intro with something about where we work. KIDS is heavily dependent upon winning contracts from Local Authorities and where we work is more or less where we have done that. We have a presence in about half the local authorities in England. We do not work in Wales or Northern Ireland. We are just starting to work in Scotland in co-operation with a Scottish charity ? Plus - in Stirling. However, as you know, the law regarding disabled children is the same across England, and the issues facing parents of disabled children are not much different across the UK. So I think these proposed on-line sessions could be helpful to all parents ? but specific advice about dealing with a specific Local Authority, school or NHS Trust is unlikely to be possible.

Hi Everyone - through the wonders of cyberspace I believe Kevin is about to log on and join us. Welcome Kevin and thanks for telling us a bit more about Kids and offering your support.

Kevin will answer the questions already posted, but if you have any more during the next hour - do feel free to post - and if any occur to you afterwards (or you're not online) do post them and we'll pass them on.

Best

MNHQ

Hi
what sort of contracts do you do with Local Authorities? I'm just curious as the services local to me are patchy and wholly local volunteers doing what they can. We have 1 x clinical psychologist working 3 days a week covering a city, three large towns and all of the smaller towns and villages in between. There is no help when you need it.

When I'm writing to my utterly useless MP again it would be interesting to know what alternatives are out there.

Hi Kevin,

Just wanted to say hi before dashing out ti get kiddies.

Hope to see you in 30 mins or so.

LeonieDelt Good to hear about your positive experience of our work in West Midlands - was this at our Wylde green premises?

Apologies to all about the timing of this session - we were keen to get going while this was being discussed - and we tried to fit it in before half term. But we will find a time for future sessions which is more conveneient (if you want to proceed).

Hi

I came on line to lurk but given your profile info thought I'd bite the bullet. The law in relation to disabled children is a massive area.

What specific areas of law are KIDZ able to advise on.

What other charities do you have links with?

Are there any moves to be able to access funds from central government rather than directly with local authorities because for people like me who have already experienced less than impartial parent partnership I feel that there are strings attached to arms length services where staff are employed by the LAs and managed within the LA line management system. Would this not be one way of promoting parental confidence and if there were an advice service which did not depend on geographical area would this not mean that the service was more equitable?

Babyheave Our services fall into a few groups. Portage or home learning for newly diagnosed disabled children. Play servcies - and in Lonodn we have adventure playgrounds adapted for disabled children. Short breaks (respite) services. Parent partnerships and and parent forums. Transitions and youth work with disabled young people. Most of our servies are funded (sometimes partly, sometimes wholly) by Local Authorities - so where we work is very much led by the local Authority.

tiredoffightingwithjelly Thanks for doing more than lurking! We are not a national legal advice service - but we could run a session with one of our staff who either works in our SEN Mediation service or in one of the parent partenerships that we run (which are more independent that the ones run by teh LA) who could give advice during the session. We also have contacts with legal firms we trust if comes to that.

With regard to other charities - I happen to be the Chair of the Council for Disabled Chidlren - you can google it - and we try to bring together all the charities that work with disabled chidlren nationally and some of the larger regional ones. Locally it depends who is strong in a particular area - so for example we work closely with Action for Children in Hertfordshire.

tiredoffightingwithjelly Regarding accessing funding from central government - I'm afraid that is very unlikley. If we had a clean start it would probably be better - but all the upheaval involved would probably not be worth the effort in my view. But this is purley theoretical as all the political parties at the moment are committed to delivering all these services through Local Authorities.

Justa You asked about follow up. I don?t want to make promises that we can?t keep. Just as you and Mumsnet are trialling this ? so are we. However let?s start by trying to offer follow up if there is a question that the KIDS staff member can?t help with immediately.