• SEND speak

SEND Aspirations to Inquiry & the Health meeting

Updated: Jan 27, 2019

Dear All

Item 3 might be a bit of an essay… but for those new to the world of SEND, and those of us who’ve been around awhile, it’s perhaps worth considering just how slowly the wheels of change move. There is no blame apportioned – it just is what it is.

Oh… And a couple of Really Important consultations to open with…

1. Closing midnight tonight – Kingston parents rsvp

2. SEND Transport in Richmond: building independence

3. From Aspiration to Inquiry – a short story of the SEND Reforms

4. Health meeting with Kingston Parent/Carers

5. Williams and Downs - Face research - Birkbeck University

6. Zumbathon Fundraiser - Home-Start- Richmond, Kingston & Hounslow

7. 'Meg doesn’t want to talk a lot, but we discovered she can perform'

1 Closing midnight tonight – Kingston parents rsvp Kingston’s SEND Transformation (ie cuts) consultation

“The Council is facing huge financial pressures, and in these times it's more important than ever that your voices are heard. We would be grateful for your help in shaping the future of SEND services in Kingston.

We are asking you for your views on a number of specific proposals contained within the plan: “

2 SEND Transport in Richmond: building independence

This consultation will close at midnight on 27 January 2019

“Over the last few years, the number of children and young people with SEND in Richmond who are eligible for help from the Council to get to and from school or college has grown significantly. This has happened at a time when councils across the country are facing severe financial challenges across all of their services.

We would like to hear your views on:

i) How the SEND Transport we provide can better prepare young people with SEND for adulthood.

ii) How we can bring what we spend on SEND Transport into line with the money available to us. “

Drop in sessions

Monday 21st January - 7pm to 8.30pm

Wednesday 23rd January - 10am to 11.30am

Wednesday 23rd January - 1pm t0 2.30pm

All at The Venue, Heatham House, Twickenham, TW1 1BH

More information here:

3 From Aspiration to Inquiry – a short story of the SEND Reforms

As a parent/carer who has taken an active part in working with the statutory services since October 2012 – and as a direct result of the aspirations of the SEND Green Paper… I look back and ask ‘what is different?’

Some things are different – but the pace of change is frustratingly slow.

What is different? That children and young people are mostly included in discussions about their support and interventions in an educational setting (eg school). I recall the SEN Manager in 2009 questioning including my son’s written opinion within his Statement – now that is a given with Section A of the EHCP.

- That parent/carers views and input are respected a bit more – not everywhere yet – but certainly there has been movement. - That a website called the Local Offer exists – with the aim of providing a one-stop shop of information for parent/carers. None of the Local Offers nationally are perfect – but what on earth stopped authorities doing this before it became law?! Btw - our Local Offer is widely considered one of the better ones.

- That Education, Health and Social Care are all being dragged kicking and screaming to jointly commission. It’s not easy – first of all they’re not used to it and secondly, the commissioning cycles and statutory duties are often on different timetables.

Below you can read a summary (and follow the links to a lot of reading if you wish) to each stage:

April 2009 - The Lamb Inquiry Ten years ago, Brian Lamb published his report into the state of the nation for SEND. Here are the first two points from the introduction:

1. The SEN and Disability Information Review was triggered by Lamb Inquiry meetings with parents and the identification of significant failures to provide statutorily required information. The failure to comply with statutory obligations speaks of an underlying culture where parents and carers of children with SEN can too readily be seen as the problem and as a result parents lose confidence in schools and professionals. As the system stands it often creates ‘warrior parents’ at odds with the school and feeling they have to fight for what should be their children’s by right; conflict in place of trust.

2. It does not and should not have to be like this. I have seen for myself the difference that schools can make with good information, and particularly with good communication: the engagement of parents for the benefit of their child’s progress; trust in place of conflict.

The full report is archived here (it was 10 years ago!):

March 2011 – a Green Paper Support and aspiration: A new approach to special educational needs and disability A Green Paper is a set of ideas from a government department that, following consultation, become a Bill, that ultimately becomes an Act (ie law). Here is an extract from the opening of the executive summary (page 7):

“Case for Change Every child deserves a fair start in life, with the very best opportunity to succeed.

Currently, life chances for the approximately two million children and young people in England who are identified as having a special educational need (SEN), or who are disabled, are disproportionately poor.

Disabled children and children with SEN tell us that they can feel frustrated by a lack of the right help at school or from other services. For children with the most complex support needs, this can significantly affect their quality of life. Hundreds of thousands of families have a disabled child or a child with SEN, and parents say that the system is bureaucratic, bewildering and adversarial and that it does not sufficiently reflect the needs of their child and their family life.”

You can read the full green paper here:

February 2013 – the Children and Families Bill Contextual Information and Responses to Pre-Legislative Scrutiny.

And we go on to the next stage - four years to get to this point.

point 35. Page 16 (of 84) - Chapter 4 SEND

“35. We are transforming the special educational needs (SEN) system from birth to age 25; raising aspirations; putting children, young people and parents at the centre of decisions; and giving them greater choice and control over their support so that they can achieve at school and college and make a successful transition to adult life.

36. Part 3 of the Bill introduces a new, single system from birth to 25 for all children and young people with SEN and their families, with consistent statutory rights and protections throughout. In addition to maintaining existing rights for parents, it:

- introduces a new requirement for local authorities and health services to commission education, health and social care services jointly. This includes arrangements for considering and agreeing what advice and information is to be provided about education, health and care provision, and by whom, to whom and how such advice and information is to be provided;”

Prior to the change in law, young people ‘lost’ their Statements of SEN after leaving school. There was a different, arguably looser, system in further education. The change in law has gone some way to adjust this, but many further education providers are still getting their heads around what this means in practical terms (ie they don’t always know how to support a young person, but as parent/carers we are best placed to advise).

The full Bill is here:

September 2014 - The Childrens & Families Act (Part 3)

This is the bit where all the talking becomes The Law…

The system of EHCPs is much more complex that that for Statements, plus there had been no standard central template (at the insistence of central government, despite local authorities asking for one).

The Code of Practice had been published in many draft forms, before the final version on 28th August - before the becoming law on 1st September (yes, that’s a Friday to a Monday!)

The training and understanding on the part of front-line staff, nationally, was not up to it. This wonderful aspirational new legislation had no formal, measurable implementation plan.

The SEND CQC/Oftsed inspections began over eighteen months after the law changed – was this helpful or fair? Great that SEND is now inspected, but… the phrase ‘could do better’ springs to mind.

The full legislation is here, Part 3 relates to SEND:

SEND Inquiry – by the Education Committee

So here we are, ten years on.

In June 2018 the Education Committee called for responses “…The Committee’s new inquiry is intended to review the success of these reforms, how they have been implemented, and what impact they are having in meeting the challenges faced by children and young people with special educational needs and disabilities.”

So far, all the permitted submissions have been published and there have been three meetings to gather further evidence. The most recent was last week with education professionals round the table.

You can watch the video here (started at 9.59am, ended 11.15am)

Or read the transcript here:

The homepage for the Inquiry is here, and all publications may be found here:

People (that’s all of us, parents and professionals alike) can still submit written evidence using the link immediately above.

What Next?

We await the completion of the Inquiry and the publication of its report. That will be the next chapter in this story.

The pressures this legislation – however well intentioned – has placed upon professionals, parent/carers and ultimately the children are enormous. To my mind and observation over the last seven years, there simply wasn’t enough planning or risk assessment at the beginning.

But…. my belief is that the intention, the aspiration is correct; to place the child or young person (and their family) at the centre of planning about them.

And, it is correct to recognise that all parties around the child or young person are equals (that includes the family). However, as with all things, some people just get it faster than others, or are perhaps just braver.

It’s just going to take a long time.

The Right to An Ordinary Life

Much of social care law, and SEN law rests on this principle. It is, of course, easier said than done. As parent/carers we find that we are project managers, detectives and advocates on behalf of our children. Sadly, this is not going to change quickly - it's part of the package. However, as parent/carers the law is there to support our child's human rights - even if the system itself cannot always deliver.

As parent/carers we can keep ourselves informed, we can network and we can support each other - and the best results are achieved when we seek to work collaboratively whenever possible (we have to scream at the wall instead!!).

4 Health meeting with Kingston Parent/Carers Last Wednesday a small group of parent/carers met with Doreen Redwood, the Lead Children’s Health Commissioner and talk about what could work better (and what works well). Doreen is keen to build further links with parent/carers in Kingston borough (and to continue working with parent/carers in Richmond) - so there will be more to follow.

Here is a shortened version of the notes:

Scratch Notes from CCG/parents meeting - 16th January 2019

Question from Doreen (Lead Children's Health Commissioner, Kingston & Richmond CCG)

How can we best engage parent/carers?


Many routes; whether that be meetings at differing hours, surveys and one-to-one. Outreach work - going to where parent/carers are - is rewarding and successful - but intensive. (I would say it's always worth doing this despite it being time heavy!)

Equipment - General Rule

If the equipment is to enable the child to access education, then it comes under Education (often via AfC's SEN Team) and the school must seek funding.

If the equipment is for home, then it comes under Health.

AfC commission many health services from the CCG - therefore, where the health need is for Education, this is down to AfC to commission (although not necessarily from the CCG)

Good News

Focus Healthcare services have greatly improved and the family using this service are currently very happy with the care services they receive.

Moor Lane Centre

Overall, there are big pluses for Kingston parents in having services co-located (aka integrated) within Moor Lane. Notable these are:

- high attendance of professionals in meetings, because they are all already in the same building

- the professionals do talk to each other

Regular problems

- there is a national shortage of paediatric nurses; this makes service delivery difficult

- even when a service is commissioned, it can be the case that the service provider promises much, but under-delivers. This lack of resilience or fragility in services is something commissioners must keep challenging.

5 Williams and Downs - Face research - Birkbeck University

From Inês Mares…

“I am part of a research team that is running an exciting research study investigating how adults with Williams Syndrome and adults with Down Syndrome perceive and process faces. Faces are one of the most important cues in our social world and understanding them can powerfully influence how we communicate and interact with others. However, we know little about how the ability to make face judgments changes as children with Williams Syndrome and children with Down Syndrome move towards adulthood.

If you think your son/daughter would be interested and/or would like some further information – it would be great if you could please either send me an email, or give me a call (07808529897). I’ll be happy to answer any questions that you have and/or perhaps we can organise a time that suits you.

We're very flexible and would be pleased to fit in with your/their schedule.”

You can also have a look at their webpage, where there is a bit more information:

Inês Mares

Postdoctoral Research Assistant

Birkbeck College, University of London

London WC1E 7HX

6 Zumbathon Fundraiser - Home-Start- Richmond, Kingston & Hounslow

Homestart offers friendship and support to parents of under-fives. This sounds like fun; please contact the organisers regarding accessibility.

“Dance to great music, with our great network of supporters, and burn off any unwanted Christmas calories (or just enjoy the music and exercise) at our Zumbathon fundraising event on

Saturday 26 January 2019 - 11.30am to 13.30 (drop in / out for as long as you want).

St Margaret of Scotland Catholic Church, St Margaret’s, TW11RL.

Tickets can be purchased here and are £10 per person. Alternatively. tickets can be bought on the door.”

7 'Meg doesn’t want to talk a lot, but we discovered she can perform'

“When Noriko Ohsada put her three daughters in figure skating lessons, it was a way to keep them active and entertained… She had no expectations of her girls, and certainly no idea that the eldest, Meg, would go on to compete and win medals at an international level, perform dance on stages a world away…”

If you have any questions at all, please ask and I'll do my best to find an answer.

With best wishes, Romany



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