• SEND speak

Travel, PCFs, Health, the Law, Benefits & Football

Dear All

All the best for the Easter Holidays; may it be sunny (and not hailstones) and may you have time to read this! And it’s also Autism Awareness Week, see articles under item 11.

1 Sunflower Lanyard

2 Update: new Parent Carer Forums – Richmond and Kingston

3 Council News – Kingston and Richmond

4 “SEND Futures Richmond

5 NHS Long Term Plan – the chapter on Children & Young People

6 The Designated Medical Officer (DMO) / Designated Clinical Officer (DCO) for SEND

7 Understanding the SEND Law - SOSSEN

8 Threshold Guidance

9 Benefits

10 Information Day: Dentistry, Trusts and Visual Impairment (VI)

11 Autism Awareness Week – this week (5 articles)

12 Football: “Deaf people can do anything – they just can’t hear”

13 The Newman Holiday Trust

1 Sunflower Lanyard

Whilst reading 21sndCo’s very jolly newsletter (, I read about the Sunflower Lanyard. This scheme runs in all British Airports and supports travellers with hidden disabilities, regardless of age.

With the summer holidays around the corner, if you are travelling by plane you might like to apply for a sunflower lanyard (you need to allow a fair amount of time for the application to be processed). There doesn’t appear to be a single site for applications, rather you have to go to each airport. Heathrow is here:

When researching the airport lanyard, I came upon this (not available locally – yet):

“Sainsbury’s has announced the extension of a …trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed.

Sainsbury’s is the first supermarket to trial the initiative as it continues to build on its vision to be the UK’s most inclusive retailer.”

2 Update: new Parent Carer Forums – Richmond and Kingston

Having checked in with Contact, there is some progress on this for each borough, and the following meeting dates have been confirmed:

Richmond Following the initial meetings at the end of 2018, and the results of the survey, Richmond is at a point of discussing a structure and governance. The meeting date is:

Thursday 2nd May from 1pm

Richmond Library Annexe, Quadrant Rd, Richmond, TW9 1DH

Kingston Following a similar initial meeting and survey, Contact held a meeting with the SEND groups in Kingston on 25th March. This is the statement given to me by Contact: "Following a meeting with some of the groups providing support in Kingston the next meeting in the development of a new parent carer forum will be on [Thursday] 9th May. Details of the time and venue will be sent out shortly"

Please contact Catherine Ratcliffe at Contact (details below) if you would like to join either of the meetings.

Catherine Ratcliffe, Contact Associate

T: 07970 387 178

M: 01709 528863


3 Council News – Kingston and Richmond


Kingston Council teams up with Bentall Centre to install first changing places toilet in town centre - 5th April “Kingston Council is working with the Bentall Centre to improve disabled facilities at Kingston’s iconic shopping centre, with work under way to install the town's first changing places service toilet.”

Richmond Cllr Roberts announces new system of governance - 4th April “Last night was the last meeting of Cabinet at York House. Hear from Cllr Gareth Roberts about the new system of governance coming soon.”

4 “SEND Futures Richmond

…is the name for the ongoing work to transform the way in which support for children and young people with special educational needs and disabilities (SEND) is provided in Richmond.

On the new pages people can see latest progress, read the You Said, We Did response to the SEND Futures consultation that was held in November/ December 2018 and find out how to continue to be involved. This includes giving views on the SEND Futures Plan for Richmond and signing up to receive direct communications and newsletters from Achieving for Children.”

More information here:

Note 1: the survey is 8 pages long, with a total of 6 questions. Not too onerous, and work doing with a cuppa.

Note 2: the link for the direct communications and newsletter took me a while to find. For ease, it is here:

5 NHS Long Term Plan – the chapter on Children & Young People

“As medicine advances, health needs change and society develops, the NHS has to continually move forward so that in 10 years time we have a service fit for the future.”

Here is the full Long Term Plan. The chapter on Children and Young People begins on page 45 (to page 55).

What stands out for me is:

· there is now a focus on ages 0 to 25 (so just like an EHCP then!)

· this is 0 to 25 across the board, but notably mental health

· there is mention of new Mental Health Support Teams

· and transition to adulthood for mental health (hooray!)

· the NHS "will improve its understanding of learning disabilities and autism"

· "the new model will deliver an integrated approach across health, social care, education and the voluntary sector...."

· a Young People's Transformation Programme (in conjunction with the Maternity Programme)

Page 50 includes this statement: “3.22. Mental health problems often develop early and, between the ages of 5-15, one in

every nine children has a mental disorder”

…for those with SEND, this is nearer to 1 in 2:

Yes - has SEND

No - does not have SEND

All - total population ages 0-19

The full set of data is here:

Page 51 includes this statement “3.30. A new approach to young adult mental health services for people aged 18-25

will support the transition to adulthood.”

Page 52 includes this statement: “3.32. The whole NHS will improve its understanding of the needs of people with

learning disabilities and autism, and work together to improve their health and


And this one

“3.33. Children and young people with suspected autism wait too long before being provided with a diagnostic assessment95. Over the next three years, autism diagnosis will be included alongside work with children and young people’s mental health services to test and implement the most effective ways to reduce waiting times for specialist services.”

Page 53 includes this statement: “3.34. Children, young people and adults with a learning disability, autism or both, with the

most complex needs, have the same rights to live fulfilling lives.”

6 The Designated Medical Officer (DMO) / Designated Clinical Officer (DCO) for SEND

This role is one that many authorities appear to have struggled with (from my knowledge). The Handbook from the CDC (Council for Disabled Children) describes it thus:

“Disabled children and young people and those with SEN and their families often need

support from services that are designed and delivered by different sets of specialist

staff and providers working in different systems with different priorities across

education and social care. These systems and priorities don’t always align with each other and this can generate serious problems for children, young people and their families when trying to get the support they need.” [is that an understatement??]

The updated Handbook is here:

The DMO or DCO is there to be the link between Health and Education; many DMO and DCO’s attend the SEND Panel meetings which review applications and placements for EHCPs. This video explains more (11.43 minutes):

7 Understanding the SEND Law - SOSSEN

It was politely, and publicly, pointed out that SENDspeak had missed SOSSEN from last week’s round up of legal advice. Ouch! An honest mistake guv’nor!

“SOSEN offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs and Disability (SEND). We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.”

SOSSEN workshops include:

How to Check a Draft EHC Plan, run by Eleanor Wright, Solicitor and Co-ordinator for SOSEN.

The workshop will cover:

· Legal Requirements & what evidence the LA should obtain.

· What evidence parents should submit.

· What should be in each section of an EHCP including outcomes.

· Timescales & what you need to know.

· Coping with unsuitable LA house-styles & dealing with important missing information

· Writing to the local authority about the draft and next steps.

· Q&A session re: draft EHC plans

Saturday 4th May - 9.30am to 1:30pm

SOS!SEN Office, 11a Creek Road, East Molesey, Surrey. KT8 9BE

There is a request for a donation of £55 per person - includes useful documentation. To book your place:

8 Threshold Guidance

This is published by Achieving for Children as a guide for providing support for pupils in schools. It is not an easy read – but it is organised as tables with a clear contents page. Please note that this is guidance only and is open to interpretation. I highlight the final sentence below….

“The guidance is intended to be used by schools, AfC officers, health professionals, social care professionals and families. It is a guide to the difficulties and challenges that pupils are likely to be experiencing when identified as needing special educational needs (SEN) support or statutory action (that may lead to an education, health and care plan (EHCP). …. Needs and strategies included in this document are not intended as checklists, but as guidance that can be interpreted flexibly according to the needs of the pupil.”

The links to the Guidance can be found at the bottom of the page.

9 Benefits

There are lots of places to seek advice on benefits for our children and young people. Recently I was asked about ESA (Employment and Support Allowance); few local charities appeared to be able to redirect this parent.

Here are some links, from another parent (thank you LT), that may be useful:

“Are you being transferred from Disability Living Allowance (DLA) to Personal Independence Payment (PIP)? Or from ESA to Universal Credit? Are you making a fresh claim or renewal claim? Or pursuing a mandatory reconsideration or appeal for ESA, PIP or UC?”

“KCIL seeks to ensure that all disabled people across the Royal Borough Of Kingston live as independently as they choose.”

“If you receive a benefit because you have a disability or illness that makes it hard for you to get around, you can use it to pay for a vehicle from a charity called Motability.”

10 Information Day: Dentistry, Trusts and Visual Impairment (VI)

…from 21andCo and open to all. 21andCo specialise in support for families of children and young people with Downs Syndrome, however this Information Day is open to all. I know from talking to many parents, that Trusts (what happens after the parents are gone) is a huge concern for parents. For that talk alone, I recommend this event…

Monday 13th May - 9.00am (for 9.30am) to 2.45pm

The Langdon Down Centre, 2a Langdon Park, Teddington, TW11 9PS

Bookings and queries:

Cost: £15 for parents and £30 for professionals, which includes lunch and

Refreshments (payable to 21&Co Ltd, 09-01-29, 13472920)

11 Autism Awareness Week – this week (5 articles)

50 ways to help autistic people

“Those who follow Autistic Not Weird’s Facebook page will know that I often use the occasion to upload a ton of picture posts- not just to spread awareness but to encourage autism acceptance too. This year, instead of uploading facts about autism like I have in the past, I started an album called “Fifty ways to help autistic people“. And, as promised, here they are in one big album outside of Facebook.”

Dual Diagnosis DSA Information Day DSA – Downs Syndrome Association

“The DSA have organised an Info day get together for parents/carers of children and young people with DS/ASD or other dual diagnosis on 10th May. The meeting is free and includes a light lunch and refreshments. Running from 10 to 3pm these meetings are always a great way to learn more coping strategies and a wonderful way of meeting and getting to know other parents. Book below. See you there!”

PDA Support Group (new from Express)

“As well as all our regular support groups we are very pleased to offer a new support group for parent/carers of young people with PDA (Pathological Demand Avoidance). Whether you are pre diagnosis, going through the process or have valuable experience to share, please do come along/drop in to a supportive friendly environment.”

Contact for further information.

An evening with Dean Beadle

“Your evening will be hosted by our wonderful patron Mr John Williams (My Son's Not Rainman). Dean will share what he has learned about himself in the 20 years since he discovered he was autistic. He will cover school life, anxiety, autistic joy, sensory needs, emotional needs and much more. This humorous and insightful evening will include songs that have been relevant to Dean's life, sung by Dean and accompanied by John Pead.”

Saturday 27th April - Doors open at 7:30pm

The CornerHouse, Surbiton

Tickets include light nibbles and there will be a cash bar on the evening.

Jonathan's Cake Sale – part 2

Last weekend, Jonathan Pile held a cake sale in aid of Ambitious About Autism. Here’s how it went…

A huge thank you to everyone who baked or bought cakes on Saturday or donated online - Jonathan raised a whopping £634.05 on the day plus £750 online bringing the total so far to £1384.05 and counting! We were overwhelmed with the wonderful messages of support - Jonathan has even had a $50 donation from an American band he follows called Wyland, Waitrose donated a huge cake and below is a picture of the first customer of the day...

Jonathan is still collecting donations, through this page:

12 Football: “Deaf people can do anything – they just can’t hear”

26th March 2019

“Ben Lampert, who played for the England and Great Britain deaf teams, says: ‘Deaf people can do anything – they just can’t hear.’ At the other end of the call is a British sign language (BSL) interpreter who enables me to interview Lampert, born profoundly deaf, about his work as the only deaf full-time football coach in Britain. Lampert’s primary role is at Brentford FC but he also took a job as the England deaf football team’s assistant coach recently. After a 15-year playing career, during which he represented England and Great Britain across the world, winning gold at the Deaflympics in Melbourne, he is helping inspire the next generation before the European Championship in Crete this summer.”

13 The Newman Holiday Trust …SENDspeak began with a holiday theme, so let’s end with one:

“The Newman Holiday Trust is an entirely voluntary organisation. Established in 1981, the Trust began by running a one week summer holiday for children with special needs. The Trust now provides holidays for over 120 children with disabilities and special needs aged 4-16 each year, in various locations around the United Kingdom.

Due to the high level of skilled care they require, or financial circumstances, the children selected for these breaks would not otherwise receive a holiday. The holidays provide a range of fun activities in a safe and supported environment and use a care ratio of one helper to one child at all times.

The Trust is an entirely voluntary organisation and owes its success to over 200 people who dedicate their free time to helping these children. This voluntary structure ensures that every penny raised goes directly towards a child’s holiday.”

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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