Got five minutes to tell Mencap about your experience of SEN support?

[KateMumsnet]

Hello

You might already know that the government has launched a consultation on 'Support and aspirations: A new approach for special educational needs and disability?'. If you're a parent or carer of a child or young person with a learning disability, Mencap would love to hear about your experiences of SEN support, and how the proposed changes may affect your lives. If you can spare five minutes, their online survey is here - your answers will help Mencap tell the government how to improve support for children and young people with a learning disability, as well as shaping their future work.

You know that bit about the governement wanting voluntary organisations charities to provide services?

Well in my borough they have been doing so for many years. So much so that the LA hasnt felt the need to develop their own.

The charity, sorry voluntary organisation, in question has just lost 66% of their funding leaving hundreds of families up shit creek without respite.

And why should a few philanthropists be funding essential services that everyone should be funding and should be a right, not a charity case? And where is the independent monitoring? And why etc, etc, etc.......

going back to charities is going back to the last century and beyond. It is a retrograde step.

I know that charities are better monitored and have mission statements and equality policies but they are still charities.

Someone, please, remind me why me and OH have paid over 50 years worth of taxes between us? So we can go Cap in Hand for help for our Hand I Capped son?

Well said, MrsDeVere.

re: the question below, did any/many of you tick speech and language therapy?

1. What aspects of your child?s support needs would you like the local authority to keep responsibility for?

I did, and EPs and advisory teachers.

Mind you, are not SALTs under NHS?

I wanted them to keep responsiblity for almost all of the things mentioned in the survey.
Because its their job.

I work for my local specialist children's team.

It has been decimated. Loads of OTs, SALTS and Physio, EdPyschs laid off.

A lot of them will have to go private due to the unprecedented drop in public sector vacancies.

Great if you can afford it.

I can only agree with you, MrsDeVere. I hope you realised I wasn't being sarcastic, earlier. I can't believe that any right thinking person would want our children to depend on charity.

Nodding in agreement here TFMDV and Ellen.

I felt that they should retain responsiblity for almost everything and that the Green Paper clearly indicated they are trying to wriggle out of having to provide anything.

I get so angry when they suggest putting all the responsibility onto charities. Surely many, if not most, of the charities have arisen out of peoples' frustration with the failings of the existing system. People have, in desperation, tried to plug the gaps in the system and now they are going to be expected to take over the whole bl**dy thing whilst having all their funding taken away.

I don't even have the words to describe how I feel about it all. Its wrong in so many ways and on so many levels that there's no possibility they don't know exactly what they are doing. Fundamentally, the government is trying to wash their hands of the responsiblity for providing for some of the most vulnerable people in the country. It makes me shake with anger to think about it.

for me I think the big problem is that if you don't have any knowledge of sn and what it's like to live with, this doesn't sound unreasonable, whereas those of us that do can see a massive car crash coming that we are almost powerless to do anything about.

dd3 sees 6 different consultants, various therapists and a number of educational professionals, how the hell is one assessment, done by someone who doesn't know her or have any specialist knowledge, going to get an accurate picture of her needs, it's a joke. Why pay all these people to look after her and then stick another layer of people in to assess again, just seems more expensive to me when you already have people there who know her well. And this crap assessment would then decide on education, health and care provision, frightening.

I also thought the la should keep control of almost everything, can you imagine if they didn't, there's a huge shortage of therapists and services already, how're we supposed to guarantee our children are seen at all, would there be any obligation still on them or would it just be those with the most money available that get seen?

I'm totally digusted by this, hit the most vulnerable and leave them with little or no legal protection, nice. Well I suppose children like mine will only grow up to be benefit scroungers anyway Like I need the stress atm.

Done.

Not at all Ellen you didnt seem sarky at all

Phew!

Did anybody else have to (wo)manfully refrain from saying: "and of all charities to be involved in this mess, Mencap would be near the bottom of my list, down there with the Retired Binman's Benevolant Fund and Neddy's Donkey Sanctuary"?

r3, I've had no dealings with mencap, are they no good then?

I emailed Mencap when I was trying to get some support for DS. He had no dx apart from Auditory Processing Disorder then. He had significant learning difficulties though, they just didnt have a label. His centile scores were 1s & 2s (i.e. 99-98 children out of a hundred would perfom at a higher rate than him).

So I emailed them and asked if they could offer us any help. I described his issues in detail. I got a snotty email back telling me that my son only had a specific learning difficulty and they were only for people whose LDs affected every aspect of their daily lives. Therefore they couldnt help us.

I felt a right idiot. Really doubted myself. Was my son ok? Was I making a fuss about nothing, imagining everything?

DS is now in a SN school and doing very well. He does need one to one support to finish any school work. We need to watch him at all times at home, he wont be able to leave independantly without significant support.

But he is not disabled enough for Mencap

I know it was only one email from one person but it came at a very difficult time in our lives. I dont know much about them apart from that contact because I have pretty much avoided them since.

Done.

tfmdv, that's really awful, not what you'd expect from them at all, don't blame you for avoiding them!

done

done

Have done it and have also said I am happy to be contacted.

MDV - that's pretty much the impression I had got of them. Big on political campaigning (much of it ivory-tower inclusion type stuff) but short on practical help and as a result short on understanding of and compassion for the real issues facing families. The thought of them deciding what a "fair" offer would contain for a child like DD1 with all her messy, practical, and sometimes politically incorrect needs terrifies me.

Not just me then r3dh.

I sort of think of them now as an organisation for people with Downs syndrome and easily recognisable conditions. No disrespect to anyone living with these conditions, I am not suggesting it is easy for you.

Its just that Mencap seemed entirely disinterested in my DS with his non obvious and non diagnosed issues.

Now he has got dx I dont feel like approaching them again. I am happy to be proved wrong though.

Another thing - I refuse to have my DS IQ tested as I am ethically opposed to IQ testing. If I had an IQ score to take to Mencap I feel I would have been treated differently. I mean - if I emailed them and said my DS has an IQ of 50 can you help me?

Again - more htan happy to be proved wrong and I have said I am willing to be contacted.

I am usually with you on the IQ testing, but actually did agree to let ds1 be tested, because the school knew he was capable, but his achievement had stalled and they were struggling identify what the problem was.

The test actually taught us quite a lot. I wasn't interested in his overall IQ and neither were they. We learned that he has slow processing, poor visual tracking and visual-motor skills and that his verbal skills were extremely high compared to his non-verbal skills - all of this helped to inform his final dx. I haven't regretted agreeing to it - although I did think I would.

I think perhaps it does have its place, but should definitely not be used as a blanket way of deciding who gets support based on IQ alone. In fact, I don't think it should be used to determine overall IQ at all, but rather to identify areas of strength and weakness in relation to learning.