The first year after a diagnosis: how to cope, and where to go for information, advice and practical help. Mumsnet/KIDS support session, Wednesday April 25, 8pm

[RowanMumsnet]

Hello there,

Following on from discussion on this thread, we're pleased to announce that we're going to host the first support session with a member of KIDS staff this Wednesday evening between 8pm amd 9pm. The topic of Wednesday night's session will be: 'The first year after a diagnosis: how to cope, and where to go for information, advice and practical help'

KIDS is a national charity working with disabled children, young people and their families across England. Sue Cawkwell is the KIDS Regional Director for Yorkshire and Lincolnshire, managing a range of services such as Parent Partnerships, specialist keyworkers for disabled children, short breaks services and disabled children's advocates. She is the mother of three children, two of whom have disabilities.

As outlined on the previous thread, the idea of these support sessions is to complement the advice and support that Special Needs posters already give each other with the insight and experience of people working for an organisation in the field. We hope that the session will pull together perspectives and advice from MNers and from Sue, and that the thread will serve as a reference point for posters caring for a child who has recently been diagnosed.

This is a trial run for these support sessions, so do please continue to keep feedback coming on this thread.

It would be great to have as many of you as possible join us 'live' on Wednesday evening, but if you can't make it, please also post up any advance questions for Sue here.

Thanks,
MNHQ

'It will also be vital that quality and safety of provision is maintained and that personalisation isnt seen as a cheaper option'

These are real risks aren't they? There is far too much snake oil out there. Unfortunately though quite a bit of it is delivered by LA servies.

What do you think the solution is? I hope it isn't LA regulation.

Hi everyone
I hope this was helpful for you. Its great. Don't forget to ask your HV about your local Portage Service

@Voidka

Its been three years since we has our DX for DS, but I still dont think I have come to terms with it, and I have bad days when I cry my eyes out at what the future holds.

Hi Voidka

We all have good days and bad days as parents. It never goes away but I think you do get stronger and more resilient.
Are there any other parents in the area you could meet up with - it's always good to have a moan and a giggle with people who know what you are going through

mstifi, - what local portage service? Not everywhere has them. Nor Earlybird for that matter.

@appropriatelyemployed

Parent partnership will trot out LA 'policies' about what constitutes the law - in most areas.

Check anything out with us!

Also grab a copy of the SEN Code of Practice and have a read - if you google you will be able to download a copy.

It lays down both school and LA responsibilities - there is no harm in quoting from it in school meetings - they wont be used to that

StarshitTerrorise - i am sorry if you don't have one in your area. You could always try to get on a course yourself.

@StarshitTerrorise

Do you think the keyworker idea will work? Our LA gave me a keyworker post dx but she was unable to help very much with pathways. I thought she was useless but turns out there are just no standards and pathways are linked to pilots and funding that comes and goes and her workload was just so high she couldn't keep on top of it. She tried hard though but the system as it stands meant she couldn't possibly do her job.

Do you think that the system needs to be more transparent and clear with proper published criteria for referrals etc.?

And what do you think the sanctions should be for not adhering to published criteria? (for example SS agreed that we met the criteria for help but they refused it because in their words 'there were families more in need of it than us').

Hi Star shit

There are different models of keyworking - the one I personally think works the best is a designated model for those families who need intensive support and multi agency intervension (ie post diagnosis, following birth of disabled child). Their only role is to keywork so they become experts and dont have any other duties that get in the way of their time. They also have offering emotional support factored into their roles. If these are then backed up by a range on non designated keyworkers or lead professionals who families can be moved on to once everything is in place. These could be therapist, portage, anyone really who has regular contact.

Funding and committment of the LA is as usual the determining factor. I'm really hopeful keyworking will develop but the keyworker is only as good as the knowledge, time and attitude they give so there does need to be proper training. ES Trust are currently developing training and will be rolling this out free to LA's in the near future

You might find that there are outreach workers who have done portage training.
A lot of portage teams are widening their remit and have changed their title to Specialist Outreach or Early Intervention etc.

My area just don't allow them. The believe their extortionate tribunal statistics are due to parental support in the early years.

@StarshitTerrorise

One last question unless I think of another (Star wonders if she is even allowed more than one question but has forgotten the rules - thank you for keeping up with us so fast btw)

Do you ever visit/lurk/read or post on the SN section of this site?

Hello Starshit

No I havent before but I've really enjoyed speaking to you all tonight would love to do it again

Sorry, - should say my EX area! KIDS should know it well.......

@StarshitTerrorise

Does KIDS offer a post dx support service?

Hi Starshit
It varies from area to area. We are looking at setting up face to face befriending schemes to offer volunteer befrienders, who are parents themselves, to give support to other parents. KIDS is a national charity but not a very large one so we are not in every area. Thats why being able to post on here is so great as it means it doesnt matter where parents are from

@OhDoAdmitMrsDeVere

I work for my LA and I have a disabled child who uses their services. Over the last couple of years I have watched as the services for disabled children have been dismantled.

This has included the cutting of many therapy posts leaving statutory services understaffed.
The cutting of funding to the major charity service provider by 66%
Suspension of respite hours for all except the children who are eligible for hospice care
The deletion of the 'Short Breaks' co-ordinator
The suspension of direct payments
The cutting of the sibling's group

The local CFCS (CAMHS) is in free fall and unable to offer anything but the most basic service.

My son was dx with ASD/LD and APD.
I was offered NOTHING post diagnosis.

So no real question. Just despair at what is happening to services that have taken years to build up.

Ohdo - have you ever complained? Or put in a freedom of information request asking the LA how they are spending their early intervention grant and particularly in relation to short breaks. I appreciate that might be hard as an employee. Is your forum any good? Could they raise some of these issues on your behalf?

@madwomanintheattic

I am in awe.

First time I've ever been on a web chat where the star of the show has answered every question and it's the mners that can't keep up!

:-) :)

do you think it would be helpful for Portage to post on here? (As a Portage Visitor myself)

@mstifi

do you think it would be helpful for Portage to post on here? (As a Portage Visitor myself)

Hi Mstifi

Portage is a very good service - that's how I started at KIDS :)

ooooo

Hello mstifi me too

RowanMN Are you SURE there isn't a small KIDS army in there typing away?
Did you get in extra biscuits to fuel the speed typing?

WHAT is going on?

Well well well!

The politicians weren't this fast, and they had typists and everything...

Thank you all for letting me on here - i've really enjoyed chatting to you all.

Enjoy the rest of your evening

Sue

:)

sue
To be honest the cuts have happened so quickly we dont really know what has hit us.
We are (almost) literally reeling.

It has been relentless and quite often the only warning we (parents and professionals) have had is a letter informing us that action had been taken.

@StarshitTerrorise

RowanMN Are you SURE there isn't a small KIDS army in there typing away? Did you get in extra biscuits to fuel the speed typing?

WHAT is going on?

Nope - my first time in a chat room :)