Parent Power

[Minx179]

I was just reading some comments on another thread about parent power www.mumsnet.com/Talk/special_needs/1085089-Iisad123-You-okay, but rather than hijacking I thought I would start a new one.

I was talking to a psychologist last week, who asked me why I don't try to get together with like minded parents, who want to expose the poor quality of SEN education, provision and dare I say it, the corruption which is regularly can be involved. Why don't I?

Now I tried to get a support/action group together about 18 months ago, but found people weren't really interested in getting political, increasing their knowledge re education and the SEN system. I understand this view, it is easier to not know/fight, accept what your told and don't question; especially if your contending with multiple issues at home.

So on here we have a number of well informed parents and professionals, including teachers. What if anything could we do to highlight the educational/health needs of our children in order to bring disability/SEN to wider public/political attention? Would you want to?

I know nothing about these kinds of things, but could we find someone to link in with a columnist?

I know this sounds horrible, but there seems to be an abundance of books on the shelves recently with titles such as 'please Daddy no' or other themes about young children getting hurt at the hands of adults.

People must seem to like to read about it as these books obviously sell.

Would a paper be interested in a series of real life 'horror stories'?

A human rights lawyer! Music to my litiginous (sp?) ears

Yes bubbles, I just read on another thread that a child that was using picture cards to describe how he was feeling had 'sad' and 'ill' removed because he was using them too often.

Isn't that a violation of human rights?

Well I'm not a lawyer but I have a few maybe useful contacts that I can't name on here, ( through worky stuff).. I can see if they would endorse/back us up

I would be interested

I'm always ready for fighting

Me too.

I feel same sense of frustration lots of parents getting crap service - few prepared to do much about it

We need a political guru.

Fiona Millar can be persuaded to write about SEN and education issues (Guardian and blog Truth about our Schools) - also well connected (married to Alistair Campbell). She got her teeth into the Academy and SEN bill once given a push.

Maybe we could start a horror story blog collection

However sadly to get noticed I think its not The Guardian / Radio 4 we need its more the This Morning sofa.

They had Guerrilla Mum here on Radio 4 ?last week - Mum who wrote book on SEN battle.

I'd love to start and contribute to a 'horror blog'. I'd be happy for people to tighten up my words and to have a go at turning others' into media friendly text (I'm no writer but I did do a newswriting course once).

MNers surely have stories to tell that should be heard.

I understand what you mean about the Guardian not necessarily being the right place alone, but perhaps if we could start it, as a kind of record of experiences, once long enough and horrible enough we could get bigger/wider interest.

Perhaps we should word limit each entry so it is column-size, and people can be allowed to add as many blogs as they have issues or battles!?

There is an article in news today about schools 'hiding' difficult children away when Ofsted visit. This is exactly what happened to my ds - sent home ill when he clearly wasn't and then next day asked to be 'helpful' and file books in the library. Schools just take a lot of liberties with SN children and think they can get away it.

That's awful fighting

If we did a blog thing, I'd like to call it something like 'back in the day' or 'how we used to live' or something with the implication that these are the dark ages that future generations will be shocked at.

Kind of live history.

That should shame someone somwhere!?

Fighting hiding difficult children seems to be pretty common tbh.. One school I know of sends the harder work children on a school trip ( usually somewhere nice) during ofsted.

I would like to see a nationwide thing where all have the same access, the same quality provision ( hopefully good!) etc as standard across the country, rather than different LEAs with different standards, critiria and provision.

There should be a national standard for ASD assessment, the same right across the country.

every school should be inclusive, asd, dyslexia friendly.. As standard.. No parent should have to fight to get into a good SEN school.. The local one should have be able to set the same provisions as the one miles down the road.

IEPs should be smart, always include parent input and be legally binding.. If an EP or other medical/salt recognised therapist makes a reccommondation, it should legally be upheld by the school and only when that provision outstretches the schools budget should we need a statement.. General care should not need to be put on statements... These could be put on the IEP .. Where parents get a lot of input.
I would also ( on the ofsed note), like to see schools inspected without notice.. Schools get notice of an impending visit, they tidy up before hand, paperwork is tidied up, the school as a general. Teachers are put under huge strain during this time.. Wouldn't it just be better to have all these things as standard and have inspectors go in without notice... Less strain on teachers, school continually setting high standards and no getting rid of problem children.

Oh and schools who are achieving high standards of care and education with SEN should get a bonus that the whole school could benefit from.

Lots and lots of things could be put in place in schools, that require little money, could work across the board with NT and SN children and would improve things greatly.
How hard would it be to cover bottoms of chair legs to prevent scraping noises, keep the classroom under control, do more about bullying and teach children that different isn't bad. Have visual and behavioural charts in class as standard, speak to the class giving clear instruction... Just as a simple example of what could easily be achieved.

What would be wrong with eating packed lunch in the classrooms? My ds1 went to a school that did this.. There was no big noisy lunchtime.. No different table or chair, the lunch staff were just assigned to the classrooms to monitor.

I'll stop now :)

what about making senco a proper training course so you would have to qualify as a senco after a 1 or 2 year course that involves some sort of placement in sn schools/bases etc. You have to be qualified to be a teacher of the deaf or qualified teacher of the visually impaired so it's got to be doable.

I've got a few horror stories I could add to a blog.

The home ed community has plenty of horror stories about removing very sad and ill children from school.

I know families who can't leave the house unless they have respite or extra help. They are invisible

Personally I am fed up with fighting the same battle over and over again yet feeling that at the end of the day I'm not really getting anywhere and feeling no further forward than when I started out on our SEN journey 12 years ago; though I am certainly better informed than I was back then.

I am tired of reading government documents, policies, consultations and initiatives which purport to have taken on board the most recent recommendations/research. The reality never seems to match the rhetoric. Families and children with SEN will be amongst the first group to be hit by the economic cut backs; worsening childrens outcomes not improving them.

I only found this site about a year ago and while it has been brilliant at highlighting that I am not alone, and that there are people out there facing larger struggles than I face, it is disheartening to see similar questions/problems with services time and time again.

SEN crops up occasionally in the press, TV and radio, but there is still a significant lack of public understanding regarding SEN and the issues that parents face. I feel that we and our children are a silent minority; many parents are undermined by the system and give up, or are beaten into submission while their children are still in the prime age bracket for intervention.

I wish the majority of teachers got more than a one hour SEN lecture in their training. Also that the demands placed on them to hit 'targets' both internal and external were reduced, so that they could spend as much time supporting/encouraging the less able as they can the more able (socially and educationally). I'd like teachers to be able to answer to my straightforward questions re attainment and progression without being afraid of the backlash from higher up the school chain. I?d like schools/teachers to not feel they have to cheat; which contributes to why they can?t answer attainment and progression questions.

I would like to see protests outside every town hall, in every county, on the same day, so that the wider public and government may sit up and take note; if only for one day. But I do not have a clue about how to organise such an event, or make people aware such an event was to take place, or how to motivate people to turn up.

Meanwhile, it could be beneficial to start a blog/website as Stark suggested to which parents could add information under different headings such as IEP's, Statements, DLA, CAMH services, helpful books, therapies, personal journeys etc. So that other parents could locate information easily on specific subjects. Perhaps we could get MN to link to it from this forum. Maybe along the lines of Wikipedia where members of the public can add their own info regarding SEN and SEND?

Well how about starting a blog/collection of stories. Collect the stories and collect the people.

Horror stories.

Then, once it is big enough, with enough stories we can vote on a LA to 'take out'.

It doesn't matter which one. Individually but collectively we can coordinate FoI requests to hit at the same time. Asking them questions specifically related to government policy/recommendations from the Lamb Inquiry/Ofsted Review. We can target the MP and Councillors. People within can take them through the complaints procedures possibly.

There is NO DOUBT that we'd uncover reams and reams of mal-practice or maladministration, inconsistent policies, illegal policies, lies etc.

Just one LA.

We can get local papers on board, hopefully it can then gain the interest of national and possible a 'This Morning Sofa'. Linking to the blog stories.

If successful it can be done again, or the threat of it might mean that LA's tighten up their practice.

Just an idea.

The more I hear of this the more I like the sound of it!

Stark - you are evil , but I very much like your thinking.

Will be back later.

Nice idea Star , I'm impressed. It would be useful to have a prompt sheet for collecting stories, like a Parental Advice. I have to admit I took a lot of notes during my tribunal hearing so I could write up my experience later, but I filed them away and refused to look at them again .

The Green Paper on SEN should be out next month as well, which hopefully should have some feedback on their consultation.

Were you thinking something like this:
The broken of Britain

and saw this:
cuts and campaigning

Yes, like that, but specific to children with a focus on education and early intervention.

Abused and neglected 5-7 year olds is what I want with a few older children mixed in. Abused by the very people who are PAID to help them.

Sorry, a bit cross right this second.

Got the school sorted, I think, so about to wind up to my big complaint LGO thingy and boy is it making me narky!

I want SENCOs to have good quality training to help families. Teachers and staff to have more than one section on SN, and the ways to spot them.
I dont want to have to fight for every little thing my kids needs and i dont want to be at breaking point beofre someone steps in to help.
I dont want to cry at appointments because the people just dont undrestand how hard every day is in my house.

Do you know the scracy thing about this thread is its not the community we are fighting, its the proffessionals, shocking!!