Mumsnetters aren't necessarily qualified to help if your child has special needs. If you have any serious concerns, we would urge you to consult your GP or other suggested organisations that offer expert advice on SN

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

UnChartered Mon 23-Apr-12 19:22:38

marking my place as we're so close to dx...thanks for this MNHQ

Tee2072 Tue 24-Apr-12 15:49:58

Although nothing to do with me, I was just wondering where MNHQ got a TARDIS if it's April 15th. grin

RowanMumsnet (MNHQ) Tue 24-Apr-12 15:55:52

Oh cripes.

<edits>

Thanks Tee!

Marking Place <waves at unchartered>

Marking spot third in the queue smile

Just hope I remember - I'm terrible for remembering stuff!

UnChartered Tue 24-Apr-12 16:28:04

Ben raises an important point though, an hour window might be problematic - DD often doesn't settle until 9pm...quite a common thing with DC with SN...

Tee2072 Tue 24-Apr-12 16:31:47

My work here is done.... ::hides thread::

Firawla Tue 24-Apr-12 16:36:26

support sessions sounds a really good idea! i will probably come and lurk, no dx yet but info might still come in handy. if they could also mention any suggestions or advice for those who are still going through assessment processes that would be great, or if no time for that maybe you would be able to do that topic another time?

TheFeministsWife Tue 24-Apr-12 18:19:31

Oh this is good, I'll be there. My dd was diagnosed with ASD in February of this year, and we've found that after the diagnosis, that was it. hmm They were supposed to be sending me loads of info about autism and parent sessions but I've had nothing.

StarshitTerrorise Tue 24-Apr-12 18:31:29

Great. We did get some 'stuff' but none of it helpful. Mostly it seemed to be propaganda encouraging parents not to ask questions, search on Internet and just 'have faith in the LA professionals' and 'reduce your expectations'.

Yes, if I hear "as DS's parents you know him best" once more I may scream. If I'd have realised that clinical psychology involved telling people to look on line and do what you want, I would've changed my degree at uni.

insanityscratching Tue 24-Apr-12 19:39:19

Well my experience twice over has been"here's your diagnosis (autism), goodbye" I did get offered leaflets second time round but was told I knew more than they'd tell me anyway.I'm a long way past my first year now and we've survived but looking back I'm amazed that anyone thought it was ok to hand out a moderate autism and learning difficulties diagnosis and expect a parent to work it out for themselves.

silverfrog Tue 24-Apr-12 19:42:57

keema, remember, you only know your dc best until the moment when you start expecting some decent input/help/provision.

once you show that you expect your knowledge of your dc to be put to good use, then all of a sudden, you are relegated to 'just a parent' (and not in a good way) again hmm

I am a long way past dx too (coming up to 5 years now), but I wish there had been something like to refer this back when dd1 was dx'd. it would have saved months of trawling through MNSN archives grin

StarshitTerrorise Tue 24-Apr-12 20:05:16

Yes, - you're the parents, you know best, but we're the professionals and we know better..........most OTHER parents accept that and can't do without us.....

madwomanintheattic Tue 24-Apr-12 20:51:54

Well, dd2 was dx 6 years ago (cerebral palsy), but ds1 was only dx in dec (adhd with aspergers traits (sensory and social) anxieties and phobias). tbh i'm comfortable and not in direct need of advice as have been around and about the community for some time. just really popped on to say this is a great idea, and to big up KIDS - i was a board member on a parent action group who worked closely with KIDS to provide an annual summer playscheme for children and youth with disabilities, and they are awesome. grin
<shakes pompoms for team KIDS>

DameHermione Tue 24-Apr-12 22:36:51

DD was diagnosed last july.

Yes she has aspergers. Read these books. Goodbye.

We are now re-entering the world off meetings and begging for help as unsurprisingly just giving a label doesn't cure the problem.

I'm working tomorrow evening but look forward to reading what happens.

TheSockPuppet Tue 24-Apr-12 23:47:37

We're close to a dx here for asd, but have pretty much been told outright that it's asd by camhs who will be giving the final dx.

What support should we expect for DS? Are there any organisations that help parents come to terms with a dx too?

BackforGood Wed 25-Apr-12 00:01:44

Through my work, I'm amazed and saddened how often Parents are - as you say, given a diagnosis and then told 'they will get an appointment through next year to be reviewed. Goodbye'. Amazingly poor service offered because the CDCs are sooooooooooo stretched.
Even if the people giving the diagnoses could give them a leaflet from KIDS, it would be a start.

I was on the waiting list for 12 months to see the clinical psych at our local CDC. We're just waiting for the diagnosis from the MDT now, but it is going to be Aspergers.

We've had an awful year as I had no idea what to do or how to help DS who was getting more and more distressed with school and life. It ended up with me having a full meltdown in my GP's office actually BEGGING for some help to get anywhere - and what I actually got was signed off with stress myself and a recommendation to look on-line.

The best help I have had is from a local parents peer-to-peer group, but you know what? They all have their own problems as well and they don't have all of the answers either. (Plus the fact that some of them are soul sucking martyrs) What you want when you are told that your child has a disorder that is going to impact his whole life and probably yours as well, is some help and support, not fobbing off as there's nothing there.

Chance would be a fine thing.

lionheart Wed 25-Apr-12 10:09:28

Got an asd diagnosis in December for DS. Disillusioned with professionals (Camhs) and with private input (EP). Best so far has been the school (teacher, senco, TAs) but even they are frustrated by the lack of support and the hoops we need to jump through to get it.

Mumsnet SN board absolutely fantastic.

We just got the ds (AS) and there is nothing locally apart from parent support groups - i would like to do the nas Help! course but it isnt offered locally at the moment. Luckily, school is brilliant, and we have read up quite a bit.

SueCawkwell Wed 25-Apr-12 10:32:17

Test

UnChartered Wed 25-Apr-12 11:26:05

<sits next to Sock>

we're very close to dx, saw a Dr last week who said DD has ASD but as she's not a Consultant, wasn't allowed to dx confused

still, it's better than hanging on - Dr also warned us of upcoming prejudice and (totally incorrect) judgement by other parents because of DDs behaviour traits. I think this was our 'councilling' [hhm]

jeanjeannie Wed 25-Apr-12 13:28:18

We've still not recieved a formal diagnosis - after contacting the paed when DD#1 was 8 months old. She is now 5 and we've had no problems getting a statement (1 yr after paed agreed she was 'different' ) - got her into a superb school and have the most brilliant (utterly brilliant!) support from the NAS.

The consultant goes between saying it's HFA or Aspergers - so I just went straight to the pre-school and got help with applying for a statement. They organised Ed psych, SALT and between them they all agreed she needed help within a mainstream school. Luckily got a place at an awesome school with an ARP specialising in her needs. We have been so, so, so lucky but none of it has been through anywhere other than school or the NAS confused Nothing in the way of help as come from the paed.

The only thing we cannot get our hands on and are now resorting to privately is an OT. I believe they're rarer than hen's teeth and I've never actually seen a real one!

I honestly think without the local NAS, pre-school and now school (plus lurking on the SN boards of MN) then I think I would have been way out of my depth and quite unable to cope.

oldteacher Wed 25-Apr-12 13:31:31

We are 7 weeks post ASD dx so it's still very new and weird for us.

I have and still are going through many different emotions- glad to have a diagnosis but saddened by the sense of that finality, worried about what to do next and longer term.

I have found dealing with other people's reactions the hardest part. My in laws think the diagnosis isn't accurate and he's just being a boy. Friends have said 'well that's what my child does, that's normal isn't it?' DH and I are still coming to terms with it all and realising the enormity of it, and I can count on 1 hand the people that have asked how we are about it.

I would appreciate help on finding local support group to deal with my feelings. I don't find it easy to ask for support so it will be a big step for me.

HotheadPaisan Wed 25-Apr-12 14:44:42

Hope to make this.

flowwithit Wed 25-Apr-12 14:53:07

I'll b there too

Codandchops Wed 25-Apr-12 15:54:09

oldteacher the responses you are getting sound very familiar. It can be easier for some people to deny the diagnosis rather than accept things. I am 2 years post diagnosis with DS and maddeningly still hear the denial stuff from time to time.

If they are verbal (and in DS's case this would be VERY verbal grin) then it becomes much harder to get people to accept the very specific challenges our children face. It's frustrating.

I was numb for a good long period of time after the diagnosis whereas DS's Dad was very "great - we now have an answer".

flowwithit Wed 25-Apr-12 16:02:27

I think you have to try and be ' it's good to have an answer' on the outside even if inside you are' oh no sad '

SueCawkwell Wed 25-Apr-12 19:30:06

test

SueCawkwell Wed 25-Apr-12 19:40:03

Test

HotheadPaisan Wed 25-Apr-12 19:47:26

We are eight months post-diagnosis. There is so much information in so many different places and it took me quite a while to work it all out. The MNSN section was invaluable. Sometimes though I think things do just take time and you have to find a way to give yourself a break and accept you can't deal with all the paperwork at once.

Some kind of flow chart would have been useful or a guide to who's who - I had to ask several times what an ed psych did and how and when they would be involved and their report now forms the cornerstone of DS1's statement (and is very good), I just seemed to have a mental block on that piece of the puzzle.

Mostly I'm just glad I already knew about MN, opted in to the SN section and it all flowed from there. Services should signpost here for sure, it's 24/7 and there are archives.

Anyway, don't really have a question, we are just about sorted. Oh, actually, I do, where on earth can you find good childcare for breaks after school or at weekends? We've had some great students and workers from the short breaks team but it tends to be home-based and we're not really getting a break. It needs to be 1-2-1, no other kids. I have a couple of other leads from local student groups but just wondering what KIDS would advise.

madwomanintheattic Wed 25-Apr-12 19:48:07

Your colours aren't working, Sue...

SueCawkwell Wed 25-Apr-12 19:50:13

Hi madwoman

Not sure what that means?

RowanMumsnet (MNHQ) Wed 25-Apr-12 19:53:12

Hello everyone,

Sue will be along in ten minutes or so to start the live session; in the meantime we're going to post up some responses she's already composed to points you've been making.

RowanMumsnet (MNHQ) Wed 25-Apr-12 19:53:49

Thanks for the tip-off about the shading, madwoman - I will try to sort!

Evening all.

SueCawkwell Wed 25-Apr-12 19:58:39

Thank you all for giving me this opportunity to chat with you. I've worked for KIDS now for 19 years and had the pleasure of meeting hundreds of parents of children with disabilities and special educational needs. Josh my eldest son is 21 now and has profound and multiple disabilities and my third and youngest child Charlotte, 14, has rett syndrome.

Hopefully I'll be able to be of some help and support. In response to some of your earlier posts:

Hi Firawla

You mention advice for those still going through the assessment process - In terms of assessment for a diagnosis, what I would suggest is that you make notes of anything that you feel is relevant - so for example, particular behaviours, gross and fine motor skills, language development, concentration, sleep etc. Remember to include your child's strengths and abilities as well as areas they are struggling with. Sometimes professionals only see a snapshot of your child so it's important that you can provide information to fill in any gaps and help them gain a more accurate picture.

Also, if you can try to have the assessor see your child both at home and in a setting such as school, nursery etc. This often gives them a greater insight into the levels of support that may be needed and also gives them an opportunity to see how a child reacts socially, copes with group situations etc.

If you reference was to statutory assessment in order to gain a statement of special educational needs - I think that could very easily be a session on its own and would be happy to do that if members were interested.

SueCawkwell Wed 25-Apr-12 19:59:40

Hi Thefeministswife

I would suggest you give whoever was supposed to be organising this for you a call and tell them you're still waiting.

Have you tried the National Autistic Society? They should have details of any local NAS groups that are running in your area and also be able to give out lots of information on autism. Local parents can often offer lots of advice and info and let you know who offers the best services etc.

Hi Starshitterrorise

Often knowledge is power - you shouldn't reduce your expectations or stop asking questions. Parents and children do have rights to lead normal lives, receive appropriate education, have short breaks etc. I've found over the years many professionals are not that aware of current legislation and quoting some can move mountains...

SueCawkwell Wed 25-Apr-12 20:00:51

TheSockPuppet and all of you who mention lack of support following diagnosis:

This is very patchy across the country and an area that really does need some improving. The SEN green paper mentions early support and keyworking (any of you had this??) The Early Support trust are currently rewriting early support guidance, information and training - including training for keyworkers. The intention is to develop keyworking across the country for parents with disabled children aged 0-19 years. A keyworker can support families emotionally, help coordinate services and be the single point of contact. The work is in its early stages at the moment. Ideally every parent should be offered support both before and following diagnosis. Parents have been advocating for this to happen for some time.

I remember the time leading up to the diagnosis being the most stressful - when you know something is wrong but not sure what it is - very scary for new mums.

Contact A Family have a helpline to support parents and also you can search specific conditions, including the rare ones and they list the various support groups.

Thank you Madwoman in the attic for the lovely comment

SueCawkwell Wed 25-Apr-12 20:01:49

Hi KeemaNanand Curryon

In relation to the issues your DS is having at school - have you tried your local parent partnership service? Every local authority will have one - some are provided by the local authority itself, others are outsourced to voluntary sector organisations. The national parent partnership network (if you google) has a list of all the local contact numbers.

Also have you tried joining your local parents' forum?

Hi Notactuallyme

Pleased that school supportive. If you contact the NAS and let them know there is a local need in your area they may come and run a course.

Hi jeanjeanie

You mention your DD having a statement - have you got occupational therapy listed in the health provision section of the statement? If not it may be worth asking for this to be looked at during your next annual review. There unfortunately is a national shortage of occupational therapists, but there must be some in your area.

SueCawkwell Wed 25-Apr-12 20:02:05

HotheadPaisan

We are eight months post-diagnosis. There is so much information in so many different places and it took me quite a while to work it all out. The MNSN section was invaluable. Sometimes though I think things do just take time and you have to find a way to give yourself a break and accept you can't deal with all the paperwork at once.

Some kind of flow chart would have been useful or a guide to who's who - I had to ask several times what an ed psych did and how and when they would be involved and their report now forms the cornerstone of DS1's statement (and is very good), I just seemed to have a mental block on that piece of the puzzle.

Mostly I'm just glad I already knew about MN, opted in to the SN section and it all flowed from there. Services should signpost here for sure, it's 24/7 and there are archives.

Anyway, don't really have a question, we are just about sorted. Oh, actually, I do, where on earth can you find good childcare for breaks after school or at weekends? We've had some great students and workers from the short breaks team but it tends to be home-based and we're not really getting a break. It needs to be 1-2-1, no other kids. I have a couple of other leads from local student groups but just wondering what KIDS would advise.

Hello Hothead

There is now a short breaks duty and each local authority has to provide a range of short breaks to suit their local needs. Every LA has to produce and publicise on their website a 'short break services statement' - if you look up your own LA website and search short break services statement is should list what is available locally together with eligibility criteria.

SueCawkwell Wed 25-Apr-12 20:02:12

Hi Oldteacher

Lots of parents have similar experiences to you. It does take time for everyone in the family to come to terms with the diagnosis, which can feel hurtful to you who need all of their support yourself.

Your local parents forum is a good place to start - they are likely to have a knowledge of the range of groups in your area. Contact a Family can also help put you in touch with both impairment specific support groups and your local forum contacts.

Hope you get the support soon

It all seems a bit of a lottery whether help is available. Locally I don't have a decent NAS group or support, the waiting lists for SALT, CP, OT et al are 12 months plus.

I've been so frustrated I even wrote to my MP, who sent me some utterly unhelpful bollocks back. So where else could I go?

Hi sue - Yes I've tried my parent partnership and they were great when I got knocked back for assessment due to an out of date report, but the person covering our area is on extended leave for heath reasons and there is no one covering them, so we're back to square one. I do go to the local forum if I can arrange it through work, but everyone around here is in the same boat. No money, no staff. Our whole area, covering a city, a town and several villages has a grand total of 5 CAHMS staff and a 0.4 CP. Its bonkers.

I read all about the services that are available in my LA for children with ASD - however when I called up about the afterschool clubs and holiday clubs I was told that they were only for children who attended special schools. Is it allowed to specify like this? Should there not be opportunities for children attending M/S schools as well?

SerenityNOT Wed 25-Apr-12 20:06:02

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

SueCawkwell Wed 25-Apr-12 20:06:13

KeemaNaanAndCurryOn

It all seems a bit of a lottery whether help is available. Locally I don't have a decent NAS group or support, the waiting lists for SALT, CP, OT et al are 12 months plus.

I've been so frustrated I even wrote to my MP, who sent me some utterly unhelpful bollocks back. So where else could I go?

Hi Keema you could try writing to your local director of children's services (some have changed job titles but a letter should get to the senior person if you address it this was) your local councillor and possibly pals for health related issues. Have you tried your parents forum - they again can vary but some have influence with local commissioners and can influence service development

SueCawkwell Wed 25-Apr-12 20:08:26

Ben10NeverAgain

I read all about the services that are available in my LA for children with ASD - however when I called up about the afterschool clubs and holiday clubs I was told that they were only for children who attended special schools. Is it allowed to specify like this? Should there not be opportunities for children attending M/S schools as well?

Hello Ben10

There should be a range of short breaks - if you child would struggle to access a mainstream group due to higher support needs this should be an argument for additional help

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').

appropriatelyemployed Wed 25-Apr-12 20:36:44

When I say refuse, I mean they will not even consider applications because they are saying they have not signed up for that element of the pilot, despite the fact that they appear in Sch 2 of the Regulation and, of course, despite having taken government money for this

bialystockandbloom Wed 25-Apr-12 20:37:18

<messymama first thing you should do is come over to the SN board if you haven't already smile>

StarshitTerrorise Wed 25-Apr-12 20:37:22

Oooh, that book sounds interesting. Thank you.

flowwithit Wed 25-Apr-12 20:37:37

Thanks Sue
I haven't tried parent partnership but I will now give that a go.
It's heartbreaking to see your own child in such a mess and as you must know yourself it's exhausting enough looking after them day to day so having to battle for support like many on here is so frustrating.
Thank you for taking your time and help too.

Voidka Wed 25-Apr-12 20:37:58

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.

SueCawkwell Wed 25-Apr-12 20:38:42

madwomanintheattic

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!>

Hi Madwoman

The last I heard this was the plan. I think the green paper also suggests that the govt want to get to a place where all special school places cost the same so that parents have the same choice anywhere in the country- it is very difficult to see how this would work in practice as there are so many determining factors. I think the delay in the green paper becoming a white paper might be indicative of the scale of the changes proposed. There was also a proposal that statement banding is the same across the country which would be helpful.

Usually when a statemented child moves LA area the incoming LA will adopt the statement in its current format until the next annual review, or at least this is what the code of practice recommends

StarshitTerrorise Wed 25-Apr-12 20:38:49

Hello messymamma grin

So sorry to hear about the dx. Hope it is what you expected and can help you all.

appropriatelyemployed Wed 25-Apr-12 20:39:26

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

Check anything out with us!

Voidka Wed 25-Apr-12 20:40:54

I agree - Our pp is definitely not impartial.

SueCawkwell Wed 25-Apr-12 20:42:21

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.

Hi Messymama

I would start by talking to your most supportive friends and see how you feel. If you are a bit shellshocked you might find it exhausting so might only be able to manage a couple at a time. Also be prepared for being a bit inundated with questions you might not be able to answer yet. Friends and relatives are often keen to get as much information out of you as they can because they want to help but it can feel overwhelming.

The early bird course is usually very good and give you a chance to meet other parents.

There are lots of mums on mumsnet too who i'm sure will support you.

Good luck with everything

appropriatelyemployed Wed 25-Apr-12 20:43:15

You have to have a CAF before you have can apply to see an EP, you have to go through SA and SA+ before you an apply for a statement, you won't get a statement unless your child is 2 years behind etc etc.

All LA policies/myths. All trotted out to parents in our areas in public meetings.

Legally, all rubbish.

StarshitTerrorise Wed 25-Apr-12 20:43:22

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?

appropriatelyemployed Wed 25-Apr-12 20:44:35

Ooops - are there rules? Best go! But would like to hear your views on the failure of LAs to follow the SEN Direct Payment Reg.

SueCawkwell Wed 25-Apr-12 20:44:51

madwomanintheattic

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.

Hi Madwoman

I know they really can vary. Sharing office space now means they would be 'non compliant' though. In 2010 following parental concerns the DfE introduced 'exemplifications of minimum standards for parent partnership services' these are to try to increase parental confidence on the impartiality of the role.

Only about 25% are outsourced to organisations such as KIDS and Barnados.

messymama Wed 25-Apr-12 20:45:31

Thanks, shame there is no magic wand to take the edge off the new list of worries and concerns!

SerenityNOT Wed 25-Apr-12 20:45:49

I would suggest that anyone who has been presented with any kind of life affecting diagnosis is to check one of the 'official' groups on the Internet, such as a regional Facebook groups or one of the major organisations' fora, like the one on www.oliviasvision.org . Share your worries and someone out there will have already travelled the road you're on and will be able to support you

If anyone out there has a child with Juvenile Idiopathic Arthritis please get in touch with me. I'm a local area contact for the Children's Chronic Arthritis Association and have a great contact if your child has Uveitis, too (Olivia's Vision). The first year, or two, or three is a daunting time and there's so much to take in board with a chronic disabling illness that it can take years just to get to grips with a diagnosis, let alone drugs, therapy, attitudes, etc.

StarshitTerrorise Wed 25-Apr-12 20:46:25

Does KIDS offer a post dx support service?

flowwithit Wed 25-Apr-12 20:46:39

Thanks appropriately employed of course I would check it out on here all you MN SN really know your stuff and have been beyond great ! This is my one and only support group so I need you allsmile

madwomanintheattic Wed 25-Apr-12 20:46:57

V interesting! Thanks, sue!

HotheadPaisan Wed 25-Apr-12 20:47:07

Thanks for the answer Sue, the SBS have been good but I think DPs are the answer for DS1, just need to find the right people to look after him for short periods.

messy, MNSN link - www.mumsnet.com/Talk/special_needs, see you over there.

SueCawkwell Wed 25-Apr-12 20:47:39

Crumblemum

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

Hi Crumble mum

I would take the lead from your friend. Most children are more understanding if they are told there is a reason for the behaviour and given a brief explanation why he behaves the way he does - everyone is different and once your friend gets the diagnosis it might be a little easier to explain

RowanMumsnet (MNHQ) Wed 25-Apr-12 20:47:52

appropriatelyemployed

Ooops - are there rules? Best go! But would like to hear your views on the failure of LAs to follow the SEN Direct Payment Reg.

No no - given that Sue is going through the questions at such superhuman speeds, I wouldn't worry about it!

OhDoAdmitMrsDeVere Wed 25-Apr-12 20:49:44

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.

madwomanintheattic Wed 25-Apr-12 20:49:49

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!

shock

SueCawkwell Wed 25-Apr-12 20:49:59

KeemaNaanAndCurryOn

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?

Hi Keema

I think it will be vital that organisations such as KIDS are there to support parents and broker support packages on their behalf. The main problem is there isnt really a market out there yet sufficiently developed for parents to purchase services. It will also be vital that quality and safety of provision is maintained and that personalisation isnt seen as a cheaper option

SueCawkwell Wed 25-Apr-12 20:51:45

appropriatelyemployed

"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.

Hi appropriate

We've only had the greenpaper so far and the pathfinders dont seem to be that far down the road as yet I agree.

HotheadPaisan Wed 25-Apr-12 20:52:15

Has anyone seen or been through an education, health and social care action plan? We did a CAF but I'm not sure it really worked as it should, it helped we had a record of what school saw too though. There really needs to be a keyworker who can help you with all this.

StarshitTerrorise Wed 25-Apr-12 20:52:59

'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.

mstifi Wed 25-Apr-12 20:53:33

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

SueCawkwell Wed 25-Apr-12 20:54:22

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

StarshitTerrorise Wed 25-Apr-12 20:56:05

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

SueCawkwell Wed 25-Apr-12 20:56:24

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

HotheadPaisan Wed 25-Apr-12 20:57:28

My LA is moving SBS to a budget for parents, they really are trying to do the right thing by upping the budgets but being honest about service costs, some services are eye-wateringly expensive but they really do cost that and you should get the budget based on need.

This LA also wanted to be a pathfinder but wasn't chosen. A friend who works for adult care services in this LA says DPs have revolutionised services. I really do think good services will succeed. The option remains to have the LA sort out everything for you but you can go your own way if you choose.

If education DPs are managed the same way I really do think we will see an improvement on the current situation.

mstifi Wed 25-Apr-12 21:00:01

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

SueCawkwell Wed 25-Apr-12 21:01:31

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

OhDoAdmitMrsDeVere Wed 25-Apr-12 21:02:08

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.

StarshitTerrorise Wed 25-Apr-12 21:02:26

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

SueCawkwell Wed 25-Apr-12 21:03:11

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

StarshitTerrorise Wed 25-Apr-12 21:04:36

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

SueCawkwell Wed 25-Apr-12 21:05:44

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

SueCawkwell Wed 25-Apr-12 21:08:44

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?

SueCawkwell Wed 25-Apr-12 21:09:15

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!

shock

:-)
smile

mstifi Wed 25-Apr-12 21:10:14

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

SueCawkwell Wed 25-Apr-12 21:12:03

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 smile

OhDoAdmitMrsDeVere Wed 25-Apr-12 21:12:04

ooooo

Hello mstifi me too smile

StarshitTerrorise Wed 25-Apr-12 21:12:39

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?

mstifi Wed 25-Apr-12 21:13:16

Well well well!

madwomanintheattic Wed 25-Apr-12 21:13:29

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

SueCawkwell Wed 25-Apr-12 21:13:52

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

Enjoy the rest of your evening

Sue

smile

OhDoAdmitMrsDeVere Wed 25-Apr-12 21:14:08

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.

SueCawkwell Wed 25-Apr-12 21:14:38

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 smile

StarshitTerrorise Wed 25-Apr-12 21:17:59

Thank you for coming, and excellent service!

I wonder if the next session could be on how to successfully naviage a multi-disciplinary meeting and actually get some accountability and actionable outcomes. SO many people struggle with that and feel that team around the child actually means team around the parent, as in right around!

HotheadPaisan Wed 25-Apr-12 21:19:51

<round of applause for Sue>

See you in MNSN sometime, there is a good SN FAQ on MN too but it might be helpful to add a 'latest developments' section too. I've spent this year just trying to understand what was going on and what help I could get for DS1, now I need to get the right provision in place and keep an eye on what's coming.

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:20:01

madwomanintheattic

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

I've no idea how she managed it - she's not even in the office and therefore getting her hand held like guests normally do

Thanks so much to Sue for her contributions tonight, and to everyone who posted.

We hope you've found this useful; do keep the feedback coming.

MNHQ

HotheadPaisan Wed 25-Apr-12 21:21:08

Holding their hands is prob what holds them up...

SueCawkwell Wed 25-Apr-12 21:21:16

StarshitTerrorise

Thank you for coming, and excellent service!

I wonder if the next session could be on how to successfully naviage a multi-disciplinary meeting and actually get some accountability and actionable outcomes. SO many people struggle with that and feel that team around the child actually means team around the parent, as in right around!

Hello Starshit
Just saw your messsge before logging off. Does your area deliver the Early Support Parent Workshops? They are a good way of giving parents confidence and approaches for meetings with professionals.

SueCawkwell Wed 25-Apr-12 21:22:21

Night everyone - off home now

UnChartered Wed 25-Apr-12 21:24:49

thanks for arranging this, i missed the live chat, but Sue has been very efficient!

hope it's a regular thing, online support

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:25:57

HotheadPaisan

Holding their hands is prob what holds them up...

Oh, very funny grin

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:32:29

UnChartered

thanks for arranging this, i missed the live chat, but Sue has been very efficient!

hope it's a regular thing, online support

Thanks, UnChartered

Of course, we'd be the first to acknowledge that the regular posters in SN are the first and best source of support on here, but we are hoping that sessions like this will add an extra perspective, and hopefully be useful.

We'll be putting our heads together at MNHQ (and with KIDS) to try to evaluate how useful this was - so do please let us know what you think.

appropriatelyemployed Wed 25-Apr-12 22:22:44

Thanks for posting your replies and listening to us.

I should point out for anyone still reading that LAs have not just had the green paper so far. There was in fact a statutory instrument published in Jan 2012 - the Special Educational Needs (Direct Payments) (Pilot Scheme) Order 2012.

This Regulation requires pilot authorities (listed in Sch 2) to follow its framework for all children/young people with SEN statements or learning difficulty assessments. It provides no discretion for the pilot local authorities to test out the proposals with a small sample of potential beneficiaries for example or impose additional criteria.

LAs are refusing even to accept requests under it.

StarshitTerrorise Thu 26-Apr-12 08:21:26

'Does your area deliver the Early Support Parent Workshops?'

No (at least no-one told me if they do). I would not expect my LA to offer anything that might empower a parent (not earlybird, portage, currently disbanding support groups etc). Those workshops sound like a good idea though.

I'm actually referring to my first LA (moved on Sat) so perhaps my second is better. I certainly hope so and moved with that hope.

Where would you find out about Early Support Parent Workshops though?

OhDoAdmitMrsDeVere Thu 26-Apr-12 08:43:10

Nearest children's centre. If they dont know ask them if there is a Child Developement Team/Centre.

BackforGood Thu 26-Apr-12 09:16:54

Thing being, Early Support is a brilliant idea / system in theory, but in practice there is no funding alongside it to give people the hours it takes to be the Key Worker. They expect other staff (SENCOs, HVs, FSWs) to just take it on, on top of their workload (which, in many cases has already increased over the last few years of cuts and recruitment freezes to teams without it). It would be such a small investment in terms of a few hours of (specially trained) FSW time at the point of diagnosis / some time early in the 'journey', to give the families some support and actually empower them as they are given the structure of the ES materials, that long term, I bet it would save the 'public purse' ££££.

It doesn't help of course that tiem after time when you try to order the ES materials, the website just doesn't let you.

HotheadPaisan Thu 26-Apr-12 10:08:21

We were on the cusp as DS1 was 4.5/5 when we asked for help and it just didn't materialise.

OhDoAdmitMrsDeVere Thu 26-Apr-12 12:32:57

All the ES materials are for download only now hmm

The whole system is gone to hell.

Seriously.

nappyaddict Wed 19-Sep-12 09:27:45

So when's the first support session?

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