Independent Parents Forum--what has yours achieved?

[Arabica]

We're trying to set up an Independent Parents' Forum in my London borough. Have you got one--it might be called a Steering Group?

The aim is to get parent feedback on existing childrens' disability services and then use our clout as an organised group to influence the big disability cheeses in our area. There's govt money available for this, and some of the local established groups, eg parent partnership, want to keep their hands on it. These groups do good works but are not parent-led and can be patronising at times.

We (ie, just 2 parents) have been asked to address a meeting at very short notice outlining what we think an independent forum would achieve. We want to sell it to parents who aren't used to taking control. Do you have one in your area and what has it done?

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bump--there's £10K govt money for this, surely someone else is doing it!

Yep - doing it here - the reason it is good is because part of the money (if it's the Aiming High For Disabled Children pot) can only be got if they get parents to be consulted on and to shape services.

Only parents know the reality and there's no cost-driven ulterior motives, which any Local Authority employee has to face the reality of.

Parent Partnership can feck off - they are already paid for by the authority!

Good luck - ours is getting there, slowly...

Did you face any resistance in setting it up? A local coalition of services that pays lipservice to including parents in planning, etc, got its hands on the first slice of cash and we are having to wrest power from them to fight for the £10k.

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I would be very wary at getting involved in meetings with the Local Authority again. I felt used and abused by it. They needed to tick the box that stated that they had consulted parents, but they didn't actually want our opinions! There was so much jargon, it made my head spin and parents were not fully supported by the local parent partnership group so went in unprepared.

However, there is now a parent-carer group which aims to do what your group does.

I think you have got to be able to reassure parents that they will be supported properly - how will they be supported? - and be clear about exactly what is expected of them, e.g. time commmitment, payment, etc.

Some parents take part in meetings with the big cheeses, but the group also has a much larger number of parents who have agreed to contribute in other ways, e.g., surveys and one-off consultations. I eagerly signed up to this because it allows me to be involved without stepping into intimidating meetings and finding my life swallowed up by paperwork and council crap. That might be a good way to get more parents on board.

I really hope it is a success. It's really important that parents voices are heard. I can't tell you whether anything has been achieved by our forum as they don't do a very good job of telling parents what they are doing! A regular e-bulletin would be handy.

Thanks Donkey D, that's v useful. We really want to set ours up completely from scratch, with no busybodies from the local carers group, etc, sticking their oars in. It will be lots of hard work (it already is, as 2 out of the original 4 parents interested seem to be very busy at the moment!)

Power to the Parents (and carers)

Meant to add that because we are all relatively new to this kind of thing (the last committee I sat on organised a film show, fgs) and indeed, in my case new to the whole world of special needs, we aim to use our funds (should we get them) to arm ourselves with some good training so that we can teach ourselves how to be effective committee goers. We'll also create a website and teach parents how to use it to check in regularly.

Incidentally Arabica, our local parent-carer forum is being supported by the parent partnership organisation (again, ours is not parent-led). They are supporting them to start up but at some point the plan is to let parents organise themselves completely. I think it helps to have a guiding hand (and considerable help with admin), at this early stage.

Would it be helpful to persuade your parent partnership group to help and get then on board with some good arguments about the need for parent power? You don't want to bust a gut and end up with a ridiculous workload. I also hope you are going to get a wage for it.

Hi DD. We have launched! We are still deciding how independent we want to be. So far parent partnership and the resource people at the child development centre are funding a creche and translation for our first meeting, and are happy for the meeting itself to be parent-led.
We want to make contact with other groups around the UK and particularly London, so we can make friends and share campaign tactics. If you fancy that please drop me a line on bergmann dot grainger at btinternet dot com

Am back!

Here it IS organised by the PCT/LEA, but they're very much facilitating, not in charge. I have to say I like that because then they do the grunt work like organising venues for meetings and getting refreshments and doing photocopying and sending stuff to all parents of disabled kids. I'm not interested in that bit - I like doing the shaping - so I'm OK with their involvement but you should be able to be independent if you want to, as long as your meetings get fed back to the authority. Like Donkeyderby, members of our group are on LEA sub-groups now.

Arabica, I've sent you an email. I am sure that those running the forum would be pleased to talk to you.

Hi gimme, I would love to know a bit more about your forum, any chance you could email me?

Thanks Donkey D. I have sent you one back.

Yup. What's your email address?

I am off to yet another Aiming High meeting this morning. This time I am going because there will be some Councillors there and I hvae been given the job of shooting down in flames some of the stupid ideas for spending the money that the employed person has come up with. It is a LOT more than £10k, well over £100k over the next 2 years and then some more. We have a Family Informaton Worker who is funded by the LA, I think they are all supposed to have them called one thing or another. Ours is great becuase she really is one of us, being the parent of a disabled child herself. We just used up some Parent Participation money by having mosaicing sessions. I kid you not, I didn't want to go but it was really enjoyable. For the next pot we are thinking of having a Writing Group where we can all tell our stories or tell each other's stories in any way we want, straightforward essay style, fiction, comic strip etc. We will find a Writing Teacher. I do get confused with all the titles they give each initiative, while I'm writing this I'm thinking and I KNOW that the money we have been discussing is from Aiming High but it is also connected to "short breaks". Let's see if I can do anything to help make it better this morning and not see the money wasted. I am chicken though, I wasn't going to go but I feel I should, argh.

Hi, can I just butt in and ask you how your parent groups are organised? How often do you meet? Can anyone come to those meetings? Do you have some kind of committee/steering group? If yes, are its members elected in some way?
Do you have some kind of issue-based task groups perhaps, that both parents and professionals can join? For example, for short breaks, therapies, transitions, specific disabilities?
We're just starting the process im my LEA and there's a lot of debate about how this should all be organised. It would be really helpful to hear how it's done in other areas.

Arabica, sorry I think I remember saying I would get back to you on this. Yes similar to others. Working with the pct/lea. Just run our third conference for parents by parents. Had a summer fun day, xmas parties, started a youth club, focus groups on leisure, short break care, transition, information and keyworking. Now starting to look at therapies, behaviour, transprort and workforce development. Just wondering where everyone else comes from as to how many areas have set this up, especially with aiming high and together for disabled children funding.

Homsa, do you have someone like our Family Information Worker? Not the person in charge of short breaks or DCATCH or whatever it is etc.
Talk about a bum steer today. I was all geared up to speak to these "Councillors" and it turned out to be 2 professionals I see and meet regularly at meetings! The woman running the training, which is all part of the parent participation thing, just didn't know the correct word and called them Councillors!
I wish I had a clearer idea of how it all works so I could pass the information on, but it does seem to be working quite well here is all I can say. We will see!

Hi devient and others, please could you email me on bergmann dot grainger at btinternet dot com and I will get back to you to make parent power friends

Arabica, plus others,we have been thinking lately of putting a group for our local discussions on facebook. To engage parents who can't attend focus groups/conferences and those who don't deal with mail. Maybe all us steering group members from different areas should also set up a group on facebook so we could let each other know whats worked etc.

I was thinking the same. Gotta put that info where people go! We haven't even got a name yet. Been toying with various combinations involving H (our area) P (for parents) and F (for forum) which sounds like the scrabble game from hell!

Devient, I haven't got any facebook experience but if you set up that group, please send me a link and I will add our details.