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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

(142 Posts)
RowanMumsnet (MNHQ) Mon 23-Apr-12 19:20:42

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

SueCawkwell Wed 25-Apr-12 20:09:46

SerenityNOT

Just looking in
I'm not sure but is KIDS about physical disabilities/sensory impairments etc, or SpLD?

Hi SerenityNOT

KIDS isnt impairment specific - we offer support to famililes with a range of SEN and disabilities

Thanks Sue

I'm sure some more posters will be along soon. They'll all be mid bedtime. I'm just off to wrestle mine into bed grin

StarshitTerrorise Wed 25-Apr-12 20:11:49

Like many parents with children diagnosed with ASD, I received a heartbreaking medical report stating all my son's difficulties from the paediatrician and other professionals. The prognosis looked bleak but it was clear at that point that there was hope in the form of appropriate support and intervention.

However, we were then handed over to 'education' and 'social services' to support him and us and all of a sudden his difficulties were down-played and often denied and the best we could hope for provision wise was a lot of agency involvement, but no actual intervention. Provision appeared to be a number of review meetings which increased in number the more you complained, but still not actual outcomes for the child.

This is where the biggest gap is I feel. What do you think can be done to bridge the gap?

SueCawkwell Wed 25-Apr-12 20:15:28

StarshitTerrorise

Like many parents with children diagnosed with ASD, I received a heartbreaking medical report stating all my son's difficulties from the paediatrician and other professionals. The prognosis looked bleak but it was clear at that point that there was hope in the form of appropriate support and intervention.

However, we were then handed over to 'education' and 'social services' to support him and us and all of a sudden his difficulties were down-played and often denied and the best we could hope for provision wise was a lot of agency involvement, but no actual intervention. Provision appeared to be a number of review meetings which increased in number the more you complained, but still not actual outcomes for the child.

This is where the biggest gap is I feel. What do you think can be done to bridge the gap?

Hi Starshit

Unfortunately many families share your frustration. The SEN green paper pathfinders are testing out an education, health and social care action plan which should replace the old statutory assessment and by a means of pulling in support from all statutory agencies in a coordinated way. The council for disabled children have responded to the green paper calling for the plans to also be available for children at school action plus. The white paper is very delayed so it's a case of 'watch this space' at the moment.

Thanks for your replies smile

Do you have any thoughts about how you can get relatives e.g. Grandparents who maybe were brought up at a time when ASD was 'being naughty' to understand what it means? I know denial or accusations of bad parenting are common from family members.

Are there any publications written specifically for grandparents? If not, something thick and heavy that I could drop on my MiLs foot would do grin

RowanMumsnet (MNHQ) Wed 25-Apr-12 20:19:10

Hi Sue - I'm going to butt in with a rookie question, because you've been so terrifyingly efficient at answering everything grin

You've mentioned green papers and white papers a couple of times. Do you have any insight into the over-arching themes that are likely to emerge in SN/disability -related policies for children over the next few months and years? Is there anything you can tell us about that, from your professional perspective, that will help parents and carers in their approaches to government bodies and service providers?

madwomanintheattic Wed 25-Apr-12 20:19:12

Sue, have you seen any further moves forward in the 'extended schools' programme that was all the rage a few years ago. It seemed at the time that the sn community was losing out big style, with mainstream schools providing much more in the way of breakfast clubs/ after school clubs? And special schools really lagging because of costs, etc.

SueCawkwell Wed 25-Apr-12 20:20:13

KeemaNaanAndCurryOn

Thanks for your replies smile

Do you have any thoughts about how you can get relatives e.g. Grandparents who maybe were brought up at a time when ASD was 'being naughty' to understand what it means? I know denial or accusations of bad parenting are common from family members.

Are there any publications written specifically for grandparents? If not, something thick and heavy that I could drop on my MiLs foot would do grin

Hi Keema

If you google NAS publications they have some books about grandparents supporting with that specific issue

Also, while I'm here, what do you think of the new proposals? I have my concerns about how it will be applied. Particularly in areas like mine where provision from the various agencies is so overstretched.

flowwithit Wed 25-Apr-12 20:20:59

We have also just got a dx ASD (hf) for our Ds age 11yrs but we had to go private as cahms did nothing to help when they saw him age 8.
He was getting increasingly anxious about many situations but mostly school ESP when starting at new secondary. He was also having panic attacks too.
We made sure both doctors workers in NHS as well as being Autism specialists but the school don't seem to believe the reports or recommendations and are not really helping at all.
Is there any way I can get them to take this seriously?
Many thanks

StarshitTerrorise Wed 25-Apr-12 20:21:18

But until 'support' is defined, I'm not sure that it won't just be better coordinated meetings and not much else.

I understand that direct payments are going to be made available for educational provision, but I know that many in my LA who has requested it immediately got an annual review that found them not to need that service after all.

The criteria for success of a pathfinder doesn't appear to be published anywhere either, nor the aims or outcomes. In short, it appears to be unfocussed, without evidence-base or outcomes. This is exactly the problem with provision wouldn't you agree?

madwomanintheattic Wed 25-Apr-12 20:23:29

And what of the oft - discussed statementing passport, where you could move counties and not have to start stat assessment from scratch?

We moved a lot when dd2 was small (military) and I became pretty hot at moving around, but there is no denying that the postcode lottery is a real problem, and that most support decisions are based on funding availability, and not need.

<Apols, I know this wasn't your remit, but you might be pretty up to date!>

SueCawkwell Wed 25-Apr-12 20:23:59

RowanMumsnet

Hi Sue - I'm going to butt in with a rookie question, because you've been so terrifyingly efficient at answering everything grin

You've mentioned green papers and white papers a couple of times. Do you have any insight into the over-arching themes that are likely to emerge in SN/disability -related policies for children over the next few months and years? Is there anything you can tell us about that, from your professional perspective, that will help parents and carers in their approaches to government bodies and service providers?

Hi Rowan

Yes. There is still a strong emphasis on parental participation and influence and developing forums so that LA and Health do start to take account of parental view.

Also a theme is keyworking and moving early support (originally an approach for the younger children) up the age ranges - this should really help families if LA's take notice as a keyworker can advocate and coordinate support

Personalisation is a big one for this government - giving families more choice over the services they receive

Also there is talk of a re write of the SEN code of practice

SueCawkwell Wed 25-Apr-12 20:26:12

madwomanintheattic

Sue, have you seen any further moves forward in the 'extended schools' programme that was all the rage a few years ago. It seemed at the time that the sn community was losing out big style, with mainstream schools providing much more in the way of breakfast clubs/ after school clubs? And special schools really lagging because of costs, etc.

Hi Madwoman

Agree it seems to have gone a little quiet on the extended schools front. I suspect the public spending cuts have really taken their toll. However the 'protection' for parents is with the short breaks duty. As far as I am aware this hasnt been tested yet by any parents through the courts.

giving families more choice over the services they receive

I do have concerns about that, considering how sparse services are now. Eek!

messymama Wed 25-Apr-12 20:27:01

Reading with interest. Ds diagnosed with ASD TODAY. Have been given early support booklet and going to be booked in for early bird plus. What can i do now? What should i be doing? Do i tell friends? Have no idea what to do. Only came on mumsnet tonight to look for answers.

SueCawkwell Wed 25-Apr-12 20:28:18

KeemaNaanAndCurryOn

Also, while I'm here, what do you think of the new proposals? I have my concerns about how it will be applied. Particularly in areas like mine where provision from the various agencies is so overstretched.

I agree it will be quite a challenge. I think most local authorities are waiting to see how the pathfinder areas develop things over the next 12 months. The green paper suggests that every parent with the new education, health and social care action plan will have the option of a personal budget by 2014 but this seems very ambitious to me

SueCawkwell Wed 25-Apr-12 20:29:55

flowwithit

We have also just got a dx ASD (hf) for our Ds age 11yrs but we had to go private as cahms did nothing to help when they saw him age 8.
He was getting increasingly anxious about many situations but mostly school ESP when starting at new secondary. He was also having panic attacks too.
We made sure both doctors workers in NHS as well as being Autism specialists but the school don't seem to believe the reports or recommendations and are not really helping at all.
Is there any way I can get them to take this seriously?
Many thanks

Hi Flowithit
Have you tried your local parent partnership service? They should be able to offer you help and advice in relation to school and negotiations with the LA on educational matters

madwomanintheattic Wed 25-Apr-12 20:31:52

grin
Parent partnership is a tricky subject on mn... Sometimes the shared office space with the LA leads to a conflict of interest - the old funding v need thing again.

Crumblemum Wed 25-Apr-12 20:32:18

Can I ask a slightly different question. One of my closest friends children, who is exactly the same age as my son, is in the process of being dx'd. Not entirely sure what his diagnosis will be (I think AHD). Anyhow, what should I tell my son. They've been very close since birth (if you know what I mean) but as they're now approaching 6 he is becoming more aware that his friend's behaviour isn't always what he'd expect. Thankfully he's still absolutely as keen to get together and play, so should I just gloss over it or is there value in introducing the concept of some kids doing things slightly differently?

Hope I've asked this sensitively. I'm genuinely not sure

Its a fine balance. When this all started, I had absolutely know idea what DS needed or where he needed to go or what was available or what would help me. If parents don't have that knowledge then I can see it being difficult to know what to do with a budget even if they got one.

Do you see organisations like yours offering signposting to parents in the future to help them with this?

SueCawkwell Wed 25-Apr-12 20:33:51

StarshitTerrorise

But until 'support' is defined, I'm not sure that it won't just be better coordinated meetings and not much else.

I understand that direct payments are going to be made available for educational provision, but I know that many in my LA who has requested it immediately got an annual review that found them not to need that service after all.

The criteria for success of a pathfinder doesn't appear to be published anywhere either, nor the aims or outcomes. In short, it appears to be unfocussed, without evidence-base or outcomes. This is exactly the problem with provision wouldn't you agree?

Hello Starshit

My understanding is some pathfinders are piloting personal budgets for education but the head of the school can still vito this if he chooses. LA shouldnt take a service away without re assessing needs. Steve Broach has written a very useful book 'disabled children, a legal handbook. He did write this with parents in mind. It covers a range of issues and legislation including education and short breaks. Steve is a barrister who worked for the council for disabled children and was one of the leading forces behind every disabled child matters

appropriatelyemployed Wed 25-Apr-12 20:35:20

"The SEN green paper pathfinders are testing out an education, health and social care action plan which should replace the old statutory assessment and by a means of pulling in support from all statutory agencies in a coordinated way. "

Mmmmm, hmm but this isn't actually happening is it?

You will find that many LAs who have signed up to this pilot are refusing parents access to direct payments for SEN or they are placing rigid restrictions on the type of SEN or child or area or provision..

Of course, none of this is permitted by the Regulation introducing the SEN direct payments, but, heh hoh, what's the law to LAs.

You should be careful about trotting out policy statements/aspirations which don't reflect reality.

This is, and always has been, about MONEY. Children are unlikely to end up better off and LAs are unlikely to release the purse strings.

RowanMumsnet (MNHQ) Wed 25-Apr-12 20:35:33

messymama

Reading with interest. Ds diagnosed with ASD TODAY. Have been given early support booklet and going to be booked in for early bird plus. What can i do now? What should i be doing? Do i tell friends? Have no idea what to do. Only came on mumsnet tonight to look for answers.

Welcome to Mumsnet, messymama. Hope you find the support you need (and other good stuff too smile)

StarshitTerrorise Wed 25-Apr-12 20:36:16

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').

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