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

StarlightDicKenzie Raising funds and being more independent would be ideal. But it's not easy. Barnardoes have a good chain of charity shops that raise money for just this. We have a few - but Barnardoes have been going for 150 years and are much better than this than we are!

Thanks Kevin for the link, I have looked at that paper in some detail. I',m not legally trained ....yet but I think I understand the message that is given and the attempts made to assure parents that the coallition are trying to make things easier for parents is simply rhetorical in my view as I haven't personally seen anything to suggest that parental confidence has increased with the pathfinding processes. Quite the opposite as some of us have tried to become involved within pathfinder projects but without success, perhaps we are too cross to be allowed in!

StarlightDicKenzie Nearly all our staff are paid. We have some volunteers in charity shops and a few scatterd across other parts of the charity. You don't seem any angrier than any other group of parents of disabled children I have met! But our staff - like me - have turned something that they never expected - being the parent of a disabled child into something that has become a really meaningful career.

moosemama LA Partners are LAs which either have given us grants or contracts. Don't get me wrong - not all LAS have 'tight control' but some do. One thing I have learned from this is that our website is probably not up to date. It is maintianed by different people in different regions and can get inconsistent. I'll try and get that sorted. Perhaps Mumsnet and I can think a bit more about the speciifc advice, but still maintianing anonymity issue.

I'd be interested in whether you have either policy or practice for ensuring that referral from Local Authorities are ethical and even legal and what action you take to ensure this or challenge when referrals or not are used as rewards or punishments for compliant or otherwise not, parents.

StarlightDicKenzie At the moment only Green Paper pathfinders can provide direct payments for education - this link tells you which local Authorities they are www.education.gov.uk/childrenandyoungpeople/sen/b00191706/send-green-paper-pathfinders

If yours is in the list then I would use google to find the right contacts - some will only be avilable in ome schools. Each LA is doing it differently. KIDS is involved with about 1/3 of these pathfiders.

zzzzz I think we're going to mull things over over the next few days and come back on to this thread some time next week (sorry for vagueness but half term means timings may be a little askew) to let you know what our thinking is.

We promise to read and digest all the suggestions and comments - positive and negative.

tiredoffightingwithjelly Your idea of direct payenmts for parental support is being considered. One word of caution - often one generation of parents of disabled children find that what they have worked for really benefits the next geneartion. Things don't often move fast in this area. Have a look at the Green Paper I referenced earlier and I think you will see your idea in there.

Thank you Kevin. Hell would have to freeze over before they would voluntarily give me education direct payments even though I'm in an LA that is a pathfinder.

They are forcing us to tribunal next month as although they have agreed to 20 hours 1:1 for ds, they are refusing to allow us to put in a qualified SALT in as this person despite the fact that she us CHEAPER than their own LSA and infinitely better qualified. They have hired an aggressive lawyer to fight against us.

I suppose this is what I meant between policy, theory and practice. We would be perfect candidates for this 'trial' but no-one in my LA will tell me who to approach for it and given they are forcing us to tribunal I would expect to be refused anyway.

I'm sorry but I have to go now and there are unanswered queries. Rowan has indicated that Mumsnet will mull things over and you'll hear again from them. I've enjoyed interacting with you - thank you.

I will just post up some more stuff that I prepared before we started to respond to queries earlier raised by others.

Thanks Kevin. I appreciate that you stayed well over you allotted time.

bochead asked about a specific service our ? Academies Mediation Service. I am not an expert on this ? and if this is of interest one of our staff who manages this service could come on line and answer questions about it.

Practical Issues. Yes ? this is where I think we could be most useful. I believe that our staff by both working with a large number of different children as well as some being parents themselves could offer helpful practical advice. We could theme the sessions by issue ? such as school refusal, challenging behaviour etc, and/or we could theme the sessions into age ranges as aggression from a 5 year old is very different to aggression from a teenager.

Our Patron. Can I explain that a patron has no control in running a charity. None whatsoever. If they don?t like what the charity is doing ? they can make their views known ? and then resign. David Cameron became a patron of KIDS in 2006 ? well before he was Prime Minister. He became a patron because (and he has said this publicly) he valued the services that KIDS provided to his family after Ivan was born. My own view is that despite everything that is happening ? it is positive to have a Prime Minister who knows what it feels like to have a disabled child. I can honestly say though that the fact the Prime Minister is one of our patrons does not affect the way we work.

Zzzzz, I think a pathfinder is this:

The government makes some recommendations like personalised budgets and LA's invited comments on them state that they do not agree with personalised budgets.

Then the government offers £150k to all LAs that are supportive of personalised budgets upon application.

LAs change their mind and become strong advocates of personalised budgets and win pathfinder status.

Parents who can make use if personalised budgets to improve outcomes for their children AND CAN PROOVE it are refused access to the study in areas that the LA have a vested interest i.e their own salaries and pensions, but hand it out to those contracted out services like transport with the compromise that they get a 'proportion' of what it costs to transport their child but that they get 'control'.

zzzzz A pathfinder is a local authority who have been given additional money by the departmenmt of education to try out some of the ideas in the Green paper I put a link up to. There are 30 of these local Authorities.

All - we'll think carefuly about how to follow this up with Mumsnet.

Hi everyone; I think Kevin has posted up most of his responses now, so I just wanted to thank him for coming on today and staying on so long to address the extra questions. Thanks also to all of you who've contributed comments and questions.

Do please keep posting; we'll be back next week (hopefully) with an update.

Thanks,
MNHQ

They are finding a new path!

My job pre-kids was to evaluate the success of government pathfinders in children's services . Honestly!

I had to interview panels from LAs about their outcomes and their learnings and find good practice.