Who you gonna call? SENSE and other reviews

1. Who You Gonna Call? 2. SENSE and other Reviews 1st September 2017 Dear All A slightly different two-part newsletter this week. Back to school and the usual format next time…

Part 1. Who you Gonna Call?

New Term, New EHC Plan?

Information and Help…

As we go into the new term, many of us will be focussed on our child or young person going back to education, or starting somewhere new for the first time.

For around 800 families, the Transfer of their child’s Statements to and Education, Health & Care Plan (EHC Plan) is still outstanding. Other families may be seeking an assessment for an EHC Plan.

We expect to have more detailed news on the new Transfer Services (for Statement to EHC Plans) by the second week in September. This detail will include a timeline and will indicate the order of Transfers.

For immediate sources of information and advice, please follow the links below:

The Golden Booklet & Binder The answer (we hope) to life, the universe and everything when it comes to Education, Health & Care Plans. Whether they’re new Plans, or transferring from a Statement. https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/assessment-andeducation-health-and-care-planning/golden-binder-needs-assessment-education-healthand-care-plans-ehcp-processes-guidance-forms-and-templates

ISPs and SENDIASS ISP = Independent Support Partnership SENDIASS = Special Educational Needs & Disabilty Inforamtion & Advice Support Services The acronyms are long enough! Essentially, these two impartial commissioned services offer help with transferring a Statement to an EHC Plan, or requesting an assessment for a new EHC Plan https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/assessment-andeducation-health-and-care-planning/independent-supporters

Legal Advice and Advocacy Please follow each link accordingly, both organisations are independent and offer an online and telephone service.

IPSEA: https://www.ipsea.org.uk/ SOSSEN: http://www.sossen.org.uk/

The SEN Team – Customer Service Standards

On this page, you will find a short survey about the SEN Team’s services, plus their detailed Customer Service Standards.

To the right of the page, in the grey column, you will find up-to-date lists of the SEN Team’s case officers in Kingston & Richmond. https://www.afcinfo.org.uk/pages/local-offer/information-and-advice/assessment-andeducation-health-and-care-planning/the-role-of-the-sen-team-case-worker-and-contactdetails/sen-customer-service-standards

Part 2. SENSE… and other Reviews Over the summer, we caught up with some of our reading of reports and research (on rainy days only!)

If you are going to look at only one of these, we suggest that you select the 5-page summary report from SENSE below. It’s the most recent research and, for many of us, the most recognisable in its recommendations.

1. Special Educational Needs in Education (SENSE) – June 2017 Intro “This study focuses on the experiences of pupils in mainstream secondary schools who have statements of special educational needs (SEN). This area has recently seen major changes in policy, including the introduction of Education, Health and Care Plans in September 2014.” “...involved a total of 1,340 hours of observation, making this research arguably the largest classroom observation study every conducted in the UK on pupils with SEND.”

Precis We feel that most parents would recognise the key findings in this report: • inclusion is mostly good for everyone, but true inclusion is difficult • many mainstream teachers lack confidence in SEND due to lack of training • and SEND is only a short module in their teacher training • in schools, attendance at training for TA’s and teachers on SEND is usually voluntary • are Teaching Assistants (TA's) always the right answer? No, but teachers lack confidence to manage without an extra adult • being a child or young person with additional needs, and automatically being placed in the bottom sets stinks!!

Answers?

• a complete 'whole school' approach is best for all and relies on leadership • overall, the quality of support is more important than quantity “Getting the right balance of adult attention [from the teacher] and need for support [from the TA] seems to be a complex, ongoing challenge” (page 3)

The link Scroll down to the Publications list in the grey column. The Executive Summary is 5 pages and worth reading (have a cuppa and a perhaps dictionary to hand…). http://www.nuffieldfoundation.org/special-educational-needs-secondary-education-sense

2. A summary of the evidence on Inclusive Education – 2016 Intro “In this report, we sought to identify research that demonstrates the benefits of inclusive education not only for students with disabilities, but especially for students without disabilities, since evidence of benefits for the former is already widely known. This report is the result of a systematic review of 280 studies from 25 countries.”

This report is based upon international study and is not exclusive to the UK.

Precis • • • • • • •

inclusion benefits everyone children and young people grow into tolerant adults; where they have a wide experience of others (whether that be SEND or cultural or racial differences) there are rarely negative affects there is a focus in this report of children with Downs Syndrome children with Downs Syndrome benefit significantly from a good, inclusive mainstream setting (= excellent role modelling) includes great diagram on exclusion to segregation to integration to inclusion interested leadership within schools makes the world of difference

Answers?

• •

(again) interested leadership within schools makes the world of difference the whole school must take the same approach

The link http://alana.org.br/wpcontent/uploads/2016/12/A_Summary_of_the_evidence_on_inclusive_education.pdf

3. Linked academic papers… the path to change “The Winterbourne View scandal, exposed by the Panorama programme, shocked the nation. It led to the Government pledge to move all people with learning disabilities and/or autism inappropriately placed in such institutions into community care by June this year [2014]. Not only has there been a failure to achieve that movement, there are still more people being admitted to such institutions than are being discharged. This has caused anger and frustration.”

Source: Winterbourne View – Time for Change – pub 2014 “The Winterboune report sets out a programme of action to transform services for people with learning disabilities or autism and mental health conditions or behaviours described as challenging.”

3a. Understanding the needs of disabled children with complex needs or lifelimiting conditions – pub 2017 Intro “This report by the Council For Disabled Children and The True Colours Trust looks at what we can learn from national data on the numbers of children with complex needs or life-limiting conditions.”

Precis •

“It's the first analysis of the numbers of disabled children with complex needs and lifelimiting conditions in over a decade, and estimates that numbers have increased

•

dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people. …disabled children and young people with complex needs and/or life-limiting conditions deserve better support than they currently receive.”

Answers?

We can’t add any more to the text above. This is the first time that this data has been sought. Earlier in the year, we saw the raw data for this report presented to a group of London authorities; it was both shocking and reassuring…

The link Pages 6 – 9 provide the executive summary. https://councilfordisabledchildren.org.uk/sites/default/files/field/attachemnt/Data%20Report .pdf

3b. These are our children – January 2017 Intro “The system is failing children with the most complex health needs. It doesn’t intervene early, it doesn’t recognise their rights to childhood, it doesn’t support families to the level that they need, and when those children then fail at every level of the system to be supported, they end up in very expensive institutional care and for lots of them we don’t understand the way out. If we don’t work with children and young people on this issue then we will just create the next generation of people who go into places like Winterbourne.”

Dame Christine Lenehan, Director of the Council for Disabled Children

Precis • • • •

2.5% of people in the UK have a learning disability This review it clear that the most vulnerable people in our society are not cared for in a way that respects their human rights.

Parts of the review make for very difficult reading.

Christine’s recommendations are practical and do-able (and not rocket science as any parent will attest).

Answers?

• •

Communication between agencies is key.

So are financial incentives for the statutory services to Get It Right.

The links The full Review: https://www.ncb.org.uk/sites/default/files/field/attachment/These%20are%20Our%20CHildre n_Lenehan_Review_Report.pdf And the easy read version: https://councilfordisabledchildren.org.uk/sites/default/files/field/attachemnt/These%20are%2 0our%20children%20easy%20read_amended.pdf

3c. Care and Treatments Reviews (CTRs) – March 2017 Intro “Care and Treatment Reviews (CTRs) were developed to improve the care of people with learning disabilities, autism or both in England with the aim of reducing admissions and unnecessarily lengthy stays in hospitals and reducing health inequalities.”

This is the policy that utilises the data and research from the two previous reports and begins to make it tangible for us – this is where the work turns into actions and commissioned services.

Precis (taken from the Easy Read policy)

• • •

People have a right to a CTR if they are in hospital for a mental health problem or behaviour that challenges services. Or if they are at risk of going into one. They and their families can ask for one if they need one.

CTRs can help people get support in the community instead of in hospital. The policy makes sure local services know about the people who are likely to need extra support - so they don’t go into hospital unless there is no other choice.

CTRs are about being person-centred. They think about the person first and how it feels to be in their situation.

Answers?

We hope so! This policy strengthens the principles of early diagnoses and identification of needs. We know that the sooner a person’s needs are identified (put very crudely: is it autism, or mental health?) – the sooner the right help can be given and this makes for a better future.

The link Both the full policy (114 pages) and the Easy Read version (60 pages - but it is easy read) are on the page below: https://www.england.nhs.uk/learning-disabilities/ctr/ctr-policy-changes/

4. What is Integrated Personal Commissioning (IPC) and where has it come from? - July 2017 Intro “There is significant evidence that outcomes for children and young people in England are not as good as they should be, that the progress in improving them is poor by international standards and that pronounced health inequalities remain between children and adults” “I have to fight for the services and healthcare that should automatically be available; life is difficult enough as it is without these barriers. This takes valuable time that I feel should be spent with my other children too” Parent of a disabled Child –Demos Live Life to the Full Report “Integrated Personal Commissioning (IPC) is central to implementing this transformation, through five key shifts in the way services provide support.”

Precis • •

This is a high-level report.

This publication explains the programmes that show that the people in the heart of the NHS are trying to make things better.

Answers?

Not really. It’s a very difficult thing to do. It will take time – but it’s a good ideal.

The link https://councilfordisabledchildren.org.uk/sites/default/files/field/attachemnt/CDC.IPC_.%20Fi nal.pdf As ever, if you have any queries at all, please ask and we'll always do our best to find an answer.

With best wishes, Caroline North (for Kingston) and Romany (for Richmond) Phone: 07469 746 145 www.sendfamilyvoices.org