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

Hi Kevin,

For those of us that have been shat upon by our local Social Services, and would rather die than speak to them again, what are the alternative ways to access your services and provision?

Hello Kevin,

I hadn't heard of KIDS before happening across this thread yesterday, although apparently they do work in our area.

Could I just ask, how people usually find out about your organisation and what it can offer in their area? The website for our specific area looks good, but when you click on the navigation it seems to say 'more info coming soon' for all of the areas I might be interested in. We have regular involvement from/contact with certain LA funded ASD services but your organisation has never been mentioned and as a result, I would never have found my way to the website in the first place, had you not been mentioned on MN.

Also, it says that in our area KIDS can offer 1:1 support with Secondary Transition, which by coincidence, is something I am just starting to look into. What form is this support likely to take? Does it take place via the LEA within school, rather than from the individual family's perspective and again, how do people find out more, let alone access this sort of service?

Many thanks.

WetAugust Your query was about our relationship with local authorities ? which is a critical question. We cannot claim to be as independent as, for example, Mumsnet is. Legally we are independent ? but we receive about 90% of our funding from local authorities. However we try and keep at our centre what is in the best interests of the disabled child and their family. So although we will not go into conflict with a Local Authority without some thought we will do it if we believe it is right. Two examples ? we supported parents to take Blackburn Council to judicial review last year ? and in the end Blackburn Council backed down. We also run the Parent Partnership service in Hull and support families all the way to tribunal. We still have a positive relationship with both Blackburn and Hull Councils.

That's good to here Kevin, that you are at least attempting to challenge LA practice whilst maintaining the relationship.

StarlightDicKenzie This is where things get a bit limited as it varies service by service. There are some where the Local Authority controls it very tightly and you cannot access without a referal. there are others where we have a lot more freedom to respond. I'm sorry our webiste isn'y very helpful. I'm not sure what the Mumsnet rules are here - but to follow this up I would need to know roughly which area you are in and then I could post the appropraite contact details of a staff member.

Do schools really allow adults not employed by them into the schools to support the children? Does the LA allow it?

Just quickly - if anyone has any info they don't want to post up on here but would like to convey to KIDS, email in using the 'Report This Post' button and we will pass it on.

moosemama I sort of merged your question with that of starlightDickenzie and answered both together - but when it gets to details of how servcies in a partciluar location work - I need to come back to you as they do differ from place to place - with a few exceptions (portage is fairly standard) we don't have a one size fits all approach. We tailor local servcies to fit what is need in a local area.

It's good that there is support for some parents out there but isn't there an urgent need for local authorities to rethink how they treat parents or maybe that should be something enforced by central government.

Time and time again on this board people share their extremely painful and draining fights to get their children's needs both identified and met. Those that persist are sometimes unfairly labelled as vexatious and many don't persist because of being simply worn down by processes and behaviour of officers of local authorities. How can parents be expected to manage their children's needs, manage their family and manage their often obstructive experiences of complaints processes of local authorities?

Sorry that sounds like a rant but I guess my question should be do you agree that the systems within health and education are often stacked against parents and what can Kidz or council for disabled children do to assist?

Have you considered getting funding from other sources too so that the 'tight control' can be less tight.

For example my LA (Herts btw) refused to offer earlybird courses and even when I tried to set it up myself through local children's centres blocked it. I approached a number of other LAs to see if I coukd get onto theirs. I couldn't as they were fully funded by their LA and I wasn't a resident.

My solution was to find a course that was part funded by Barnardos, which meant that they didn't have to stick to their residents only.

zzzzz On-line advice - the areas I thought we might trial included things alreday mentioned like challenging beahviour, school refusal, but also -special school or mainstream, help straight after diagnoses, Managing the long summer school holidays, Relationships and sexuality for disabled young people, Leaving home - but you may have other areas.

I think the advice - area query is more of an issue because every area is different. One of the problems is that families can start to consider moving house just to get better servcies. But our parent partnership staff could come on line and give some advice which woudl be applicable wherever people live.

Professionals - I like to think that our staff are professionals - but I'm not sure that's what you mean. But yes if you wanted us to access other professionals - eg. peadatrician etc then I think we could do that.

With campaigning we are part of the Every Disabled Child Matters campaign and we work through that rather than separately.

Kevin,

Can I also ask about the staff you employ. You mention they were mainly parents. Are they paid or volunteers, and are they as cross as us ?

StarlightDicKenzie Schools do allow staff in not employed by themselves. There has to be an up to date enhanced Criminal Records Bureau check in place and sometimes other requirements. There is likley to be more of this in future as 'direct payments' have just become allowable for education as well as social care and health.

Ok. Are the areas where there is tight LA control, the areas where you have LA Partners or does that mean something entirely different?

I am a bit confused, because our LA doesn't appear on your list of LA Partners, but according to the local site, you do operate in our area.

I think that personally, I would be uncomfortable dealing with an 'independent charity' who is work under the control of the LA - especially our particular LA. I wouldn't want to divulge my location in an online forum and to be honest, probably wouldn't give my details privately via MN either, as I find it hard to believe that the charity could be truly independent under these circumstances. As you said, this would make it difficult for you to make provide any meaningful advice and support to me via MN, which is a shame, because there are certain services your charity offers which my family would benefit from.

How do you access education direct payments? How do we find out more?

Apologies for typing errors - I have a small child ... helping me.

zzzzz I'll ask our IT person to fill me in! I know what you mean about tight control - and it's not the way things used to be. But we sign contracts - and some LAs - especially with austerity - are very anxious that we spend their money on the families they refer.

How about parents being able to request and be given direct payments in order to purchase parental support services?

That way the we would be a party in the funding contract with the support service rather than the LA or maybe there could be tri party agreements?

tiredoffightingwithjelly Broadly - I do agree. The Coalition government also agrees in part. they published a Green paper www.education.gov.uk/childrenandyoungpeople/sen/b0075291/sen-and-disability-green-paper-executive-summary/
which KIDS had some input into. But now not much seems to have happened. The next stage has been delayed. However - while ther are some people who are just unhelpful and ther are some sytems that are designed to restrict expenditure on disabled chidlren, it will always be a very complex area - I know from just running what is a small organisation besides a Local Authority that I cannot be confident that everything is working as i would want it all the time.