Services for children with SEN or disabilities: tell the Government your views!

[HelenMumsnet]

Hello.

We thought you all might like to know that the Government is preparing a Green Paper on Children And Young People With Special Educational Needs And Disabilities.

And Sarah Teather, the Minister of State for Children and Families, has invited views from everyone with an interest in services for children and young people with special educational needs (SEN) or disabilities in England.

All views and perspectives received will be considered as part of developing proposals for a Green Paper on SEN and disability, to be published this autumn.

You can respond with your views here

And, of course, we'd love you to share your views on this thread, too - if you'd like to.

[keepyourmouthshutox]

Spent couple of hours filling in the form yesterday. Too depressing to go into it again. Felt like posting my proposed statement as an example of what is wrong with the system.

[HelensMelons]

Perhaps re-opening ICAN Unit in Ballynahinch, NI; where are all the littlies going with speech and language difficulties?

[bigcar]

do you know I found myself typing, 'Properly train school SENCOs, not just a couple of days but a proper training qualification before that post can be taken.' on more than one occasion

[saltyseadog]

-Why are the services not offered in a more integrated fashion, including the sharing of information between the agencies concerned?

-Why is provisioning inconsistent between counties?

• Why has it taken several months to get an hour long carers' assessment completed for us?
  

• Why does it take 14 months to get a wheelchair sorted for dd (by which time she has grown and we are due to start the whole process again soon )?
  

• Why does the Disabled Facilities Grant (DFG) not fund room covering hoists for those who really need them? Or flooring (apparently if you can't afford to carpet the room yourself your dc will have concrete on the floor)? Or windows that are quite clearly broken being replaced? Why is the whole DFG prcess so bureaucratic?
  

• Why do we only get 3 hours a week respite for our profoundly disabled dd, and our local council is apparently unable to provide suitable carers for her?
  

• Where are the short breaks for carers mentioned in the election campaigns?
  

• Why is there no decent, affordable after school/ holiday provisioning for disabled children? How is this equitable? It seems like the families that need the most help with the care for their children (due to their disabilities) are put in the worst position for being able to help themselves.
  

• Why does DLA need to be renewed every x years for children with syndromes/ conditions where there won't be any improvement in their prognosis? Surely in some cases, where the disability is profound, DLA could be given over a much longer period?

[SanctiMoanyArse]

'- Why is there no decent, affordable after school/ holiday provisioning for disabled children? How is this equitable? It seems like the families that need the most help with the care for their children (due to their disabilities) are put in the worst position for being able to help themselves

Yes.

There are MPs on TV claiming that claimants are croungers

Comments on newspaper columns seeming to agree

Yet I want a job, and my mentall health is very clearly diminishing whilst I wait (I laugh to think what care for my family if I were hospitalised- and at times it has been close- would cost).

I just want a job, to bring in income, feel as if my family is as valid as everyone else's, not be questioned by neighbours why DH is around at 3.15 in the afternoon ( a particular laugh as with work and study he does 70 hopurs a week easily, just breaks into it to help on school run)

Not to have to worry about cuts for myself every time I put on TV

And if you ever do it, make sure it extends into MS; a statement should be one of the criteria for access.

[used2bthin]

In my area professionals are not being replaced- so three special needs early years advisors have gone (one died, two moved jobs) so the service has been drastically reduced but they are not ACTUALLY getting rid of people so I am guessing it doesn't look like a cut on paper? This means less children get help and less help for those who are "lucky" enough to be seen as needing it enough to get it.

Similarly DD's SALT is going off to have a baby and not being covered! She has a massive workload and now the children she works with will have ten months without a SALT.

It seems we are being gradually pushed towards having to find the money for the things our children need or rely on charities to help?

[SanctiMoanyArse]

Oh Pipin wouldn;t that be wonderful? Yet we couldn;t even get LEA to attend a transition statement review where we were asking for extra provision (cancelled three times each 10 minutes before as 'another child needs us more'- in the end we just went ahead with no LEA input).

A freind has been through entire leaving school transition process witha severely disabled child where she wanted resi college: with nary an appearance from LEA, and then absolute refusal of funding from them so he's in a MS SNU again for the foreseeable.

[LucindaCarlisle]

Very good PipinJo.

I once was told by a Social Worker: "You are just going round from agency to agency asking for help" YES I was but no one was listening to me. A school Nurse several years earlier had seen what the problem was and passed it on to an Educational Social Worker. He did nothing, he made things much worse.

In our authority, Educational Social Workers seem not to communicate with ordinary Social Workers.

[princesspuds]

Why is it, that when you get a grant for adaptations, the parents/carers are NOT consulted as to what is best for their children.

What makes a surveyor and an OT who has never met your child, only read on paper what their conditions/needs are more educated in knowing what is best.

Parents know best, LISTEN TO US !!!!!

[slightlycrumpled]

Desperate lack of SALT provision. Simply not good enough! Thank goodness DS2 has it in his very hard fought for statement otherwise he would not be recieving it now, despite him being at the severe end of the language spectrum.

Despite DS2 being very unwell from birth, with hearing and speech difficulties from 2 years old, nobody mentioned DLA or carers allowance to us until he was four years old.

Having to go through the painful experience of re-applying for DLA every three years for a child with a chromosome abnormality. I very much doubt he will ever be able to grow that bit of missing DNA! His symtoms will only really get worse or at best stay the same.

Mostly agree with princesspuds on listen to parents. We really do know our children the best so please do not just pay lipservice to us.

[LucindaCarlisle]

Teachers are just not interested in Medical conditions.

[ketomummy]

Simply : not joined up services let our children down.

Social worker, teacher, paediatrician neurologists all work in their own bubbles for 8 years...we could all derive so much progress if we just WORKED TOGETHER !

[tiredmummyneedswineandsleep]

more support for families. have read on here about lack of respite for profoundly disabled children.
for me it is the lack of services, help and support for pre schoolers on autistic spectrum . feel like we dont fit in anywhere. not allowed even half of ds's 15 hours of pre school education as they wont accept him. previous private nursery had ed psych in twice but we are still no further forward. it is extremely isolating. i hear early intervention is the key but its not being offered here.

[DeadlyNightShadeofViolet]

Well I have jut read the Summary Proposal for our local council. It makes depressing reading.

Some of the quotes

• 'Less support for children with SEND in school and early years settings'
  

• 'Schools will need to be more self-reliant in
  

dealing with SEND' (although it then gos on to say that it will 'Cease to subsidise SEND training opportunities for schools'

• 'School staff and Children?s Disability Service colleagues will need to work closer together to plan how to meet children?s needs with less support'.
  

• 'This proposal reduces provision in school for children with SEND towards a statutory
  

minimum.'

• 'We will encourage
  

our special schools to provide more support to children with special needs in mainstream
schools' (so will all the SEN children be forced into Special School)

It also goes on to say that 'The County Council may risk reputational damage from media reporting and public
campaigns' - poor them

This is the most depressing thing I have heard in a long time. I knew the cuts were going to be bad, but I didnt realise they would be like this.

[donkeyderby]

Equality of access to childcare and play and leisure services. That means EQUALITY of access, not NO access, or 'ok, you can have a club one day a week with a 1:1' but after that you'll have to whistle.

That also means equality of access to ALL children with ALL disabilities, not just cherry picking the easy ones.

looks up at passing flying pig

[wendihouse22]

My son, diagnosed aged 5yrs with autism, was, I was told "not that bad" in terms of need. Everything we applied for we got "his need isn't that great". Now, aged 10 next month, his needs are so great, he requires full time one to one, he cannot access much of the teaching in his mainstream class. I'm told he is bright (always was told this)but was also informed last week that he will NOT be able to go on to mainstream secondary education.

I've been pulling my hair out for years, trying to get people to LISTEN and DO SOMETHING. Now, we are where I knew we'd end up. He is medicated (I HATE giving it to him)and really really struggling. Now, people are listening.

Early intervention? Yes, would have been useful. And a little acknowledgement of the fact that sometimes "mum knows best" with regard to her child. Could have saved a lot of upset.

[thefirstmrsDeVeerie]

I have never met a parent who hasnt had to fight for a statement or assessment or the equipment their child needs. From any end of the disability spectrum.

It might be a special pen or a proper wheelchair.

It is always stressful. Dont you think if we could just go out and buy this stuff we would?

Oh and can we make inclusion more than just a word please? My son could still be in our local MS school rather than in a SN school (lovely school) miles away.

I am going to agree with early intervention. I would, I am a portage worker. My own son didnt get a dx till he was 7! I understand very well that there has to be quite a lot of 'wait and see' with very young children. But 7?!

I am also very concerned about children in care falling through the net. Even the most dedicated foster carer would be hard pushed to put in the work needed to get a child what they need. Plus they move about so much, from borough to borough sometimes. I think they really miss out on early work.

[dolfrog]

The problem with the Special Educational Needs is the lack of a professional approach to the diagnosis of the real cognitive deficits, disorders, or differences, our children have.

The diagnostic system is very close to being corrupt, in some instances it is diagnosis to match a support program and not diagnosis with regard to scientific medical research.

The SEN assessment and diagnostic processes need to be taken out of the control of bodies within the education system, and placed solely with the multi - discipline medical professionals who are best able to diagnose the medical and cognitive issues which can cause nearly all SEN problems.

We need to remove teachers from the assessment nad diagnostic process, but they should be able to provide referrals for a full multi - discipline medical assessment.

So called non profit organisations should also be take out of the assessment and diagnostic process. Thye should also be subject to closer scrutiny from the Charity Commission as to their agendas and funding, especially with regard to the endorsement, recommendation or provision of remedial programs. These organisations should provide the best current scientific information with regard to the cognitive deficits which they claim to provide support, rather than not provide this Scientific information because it conflicts with their internal agenda. Some investigation should also be made with regard to the fees they pay out to staff members and consultants in line with an organisations which claims to be charities.

Armed with a clinical diagnosis of a child's cognitive skills deficits and stengths, it is then the duty of the LEA, school,and teachers to adapt their teaching methods to match the SEN child's learning needs.

Many of the assessment and diagnostic procedures are technical and complex and not with the academic discipline of the teaching profession nor a single profession such as Educational Psychologists. It has been stated in a research paper of 2006, that with identical symptoms a child in the UK can get 4 different diagnosis dependent on the type of medical ,professional the child is reffered to. So a multi - discipline medical diagnostic approach to assessments is the only approach to provide a real diagnosis of all of the issues and disabilities or cognitive deficits a child may have.

Currently their are too many self interest groups involved in the assessment and diagnostic process. The children suffer because they do not get the help the need, and when they leave school, and enter the adult world they may not have any idea of the cognitive disabilities they may have, and which employers etc should be aware of so that thye can get the support they need to be able to contribute to our society.

[StarkAndWitchesWillFindYou]

Please do it!!!!!

[Agnesdipesto]

This proposal reduces provision in school for children with SEND towards a statutory minimum.'

This is so depressing how many of them ever gave anything above the minimum anyway?

They should draw up a list of their statutory duties and their discretionary spending and only spend anything discretionary (swimming pools, libraries etc) when they have met every one of their statutory duties (to our kids). They won't cut popular things though as that would mean losing votes whereas how many votes do SEN get you?

The High School next to me is getting a massive gleaming 6th form block and yet another primary school is getting a childrens centre (about the 6th in a very small town) - not saying they aren't useful but whenever I have been to them they are overstaffed and underused as it is. Also whats the point in having lots of childrens centres full of professionals diagnosing needs early at 'drop ins' if they do not intend to do anything about the needs once identified.

[Peaceflower]

Hear hear!

[Flowertots]

Unfortunately I believe the complete opposite-special needs schools should be closed down completely.

Special needs children should be integrated into society to prepare them for the real world where not everyone has a disability. By segregating them we do them no favours and non-disabled children grow up without the benefit of learning how differences should be accepted. I speak as a parent of a child who attended both a special needs school and now a mainstream.

LA's should not try and con families out of getting statements by telling them how bad they are and therapies should be available for early intervention. In short-the benefit of the child should (in an ideal world) outweigh the LA's interest in their balance sheets.