• SEND speak

Voices in design, Post-16, Voices in experience & Things to Do

Dear All

Voices… whether that be parent/carer voices (item 1), those working with young adults (item 2), videos from young people (item 3)…

1. Voices - from SEND Transport, to a Parent/Carer Forum to a Parent Panel

2. Clarification & more on the SEND Inquiry (Post-16)

3. Three different home videos on autism and PDA

4. Changing Places

5. Half-Term Events

6. Windham Croft after-school clubs

7. Folk Unlimited

8. What’s the difference between BSL and Makaton?

9. Massage for relaxation treat for carers

1 Voices - from SEND Transport, to a Parent/Carer Forum to a Parent Panel

Once upon a time, we had a parent carer forum in Richmond and Kingston. The forum chose to close last year but go back a few years and one of the forum’s earliest projects was to work on the (then) new joint borough SEND Transport policy.

We held several meetings with the commissioner and families, then followed this up with smaller focus groups. I facilitated these smaller groups and we literally went through the draft policy line-by-line (you know who you are).

The result of this was a policy where children’s medical needs were highlighted and adjustments made to the policy that were potentially life-saving (ie had those adjustments not been there, it was possible for a child to have died without receiving the appropriate emergency intervention).

Now…. In Richmond, the SEND Transport policy is being updated. There is no parent carer forum, instead Achieving for Children arranged drop ins and there is a survey on the Local Offer. There is an opportunity missed surely? We know money is getting tighter, so where is the organised parent/carer voice?

A new Parent/Carer Forum?

Contact are tasked with creating a new parent/carer forum – but initial feedback suggests that this will be challenging and may take some time. You can (re)read their invitation for expressions of interest here – although the closing date for this was 14th January.

And a Parent Panel in Richmond

Every parent/carer in Richmond should have received a letter before Christmas offering them the opportunity to join a Richmond Parent Panel – a joint initiative between Richmond Council and Achieving for Children.

The current discussion paper on the plans can be viewed within the reports’ packs for the CYPwDLD Partnership Forum (Children & Young People with Disability and Learning Difficulties); it’s on page 11, agenda item 3.

For further information on the CYPwDLD, please contact the Clerk within the same link:

2 Clarification & more on the SEND Inquiry (Post-16)

In the last SENDspeak, I seemed to get into essay mode and wrote a short history of the SEND Reforms. There will be a Part II at some point, in the meantime, I’d like to make clear that one of the principles of the SEND Reforms was to build upon and share good practice.

Before the SEND Reforms, and as now, there are always establishments that ‘get it’ better than others. There are schools and practitioners that have done and still do amazing work with children and young people. Unfortunately, it’s the less amazing (and truly awful) that are often talked about more. But… there is good and excellent practice out there.

Post-16 - Tuesday 29th January at 10am…

…the Committee will hold a roundtable discussion on post-16 support. Details are here (you can watch this live!):

“The Education Committee’s latest roundtable discussion on special educational needs and disabilities focuses on issues faced by young people with SEND post-16. The session will feature representatives from FE and specialist colleges as well as those who work to support young people to access employment and live independently.

Chair's comments; Rt Hon Robert Halfon MP, Chair of the Education Committee, said: ‘This session is an important opportunity to hear the experiences of those working with young people with SEND post-16, given the significant reforms that were brought in for this age group. We welcome the chance to investigate how the reforms and introduction of Education, Health and Care Plans have impacted on the experiences of young people after the age of 16, while exploring whether young people with and without EHC Plans are receiving the support that they need as they move on into adulthood.’ ”

3 Three different home videos on autism and PDA Are People with Autism & Asperger's Controlling? 5.19minutes

This is from an adult woman, reflecting and talking about her experiences of people’s feedback to her, as an autistic adult.

“I wanted to look into why people with asperger's or autism tend to come across as controlling. I hope that this video helps you understand where people on the spectrum are coming from and also help those on the spectrum realize how they might appear to others when they get upset about changes.”

“An anxiety driven need to be in control” 15.07 minutes

This from a young man, quite a long video, but with such a high level of self-awareness. This young man has moved to California (from Britain) and reflects on how PDA affects him and others.

“A difficult day is when…. [11 minutes]

… I decide I can [manage to] leave the house, but only if I don’t wear shoes. …then someone says I have to wear shoes [so I can’t leave the house]“

This video is of a teenage boy, resident in a special school, being interviewed about himself. Once again, this is honest and insightful.

“The most frustrating thing is to have the functional capacity to understand what is happening, and to understand that I should be able to do all of these things, but…. The functioning ability isn’t there.

4 Changing Places

Changing Places toilets are few and far between – in fact, there are still none in Kingston yet.

There is a total of 1243 Changing Places toilets available nationally, (an increase from just 140 in 2007). So, this news below, for those whose quality of life is significantly affected by the lack of useful toilets available is Really Good News.

Before Christmas, there were two important announcements for the Changing Places toilet campaign:

· The Government will be consulting on ways to require Changing Places toilets to be provided in new large publicly accessible buildings.

· Over 100 NHS hospitals to build Changing Places facilities backed by £2 million fund

“This is a really exciting moment for the campaign and a huge credit to the dedicated work of Changing Places toilet campaigners who have been tirelessly pushing for legislation change and for strategic venues, including hospitals, to install more Changing Places toilets.

New shopping centres, stadiums and theme parks are among buildings that could be required to provide Changing Places toilets under the proposals to be put forward by the Government. The consultation on these proposals is expected to be launched next year.

This news promises to make 2019 a real year to remember for the Changing Places toilet campaign and we know this wouldn't have been possible without the tireless work of incredible Changing Places campaigners. This victory is yours and we couldn't be more grateful for your support!”

5 Half-Term Events

Did you know that the Local Offer has a total of 86 events listed for the half-term week, 17th-24th February? Keep checking this page for updates:

Short Breaks - Booking open for Energise at February Half Term

Families can now register for February half term for Energise for children aged between 5 - 8 years and Energise+ for children between 9 - 15 years old with Moderate and Severe Learning Disabilities. Below is the link to the information and the programme and application form. (If families have already filled in a form they don't need to do again. Just email the team to put their child's name down.)

6 Windham Croft after-school clubs

On these pages the Local Offer has provided updates about the after school clubs that are run at Windham Croft on Tuesday and Thursday for young people aged 8 + The Tuesday club is yet to get going due to low interest. The Thursday one has spaces for 3 more children.

7 Folk Unlimited Organised by the English Folk Dance and Song Society; this is a creative, inclusive, multi-sensory band sessions for disabled young people. Who knew this place existed? And it is near the zoo so could make a good day out!

Sunday 3rd February - 2pm to 4pm

Cecil Sharpe House, 2 Regent's Park Road, London

“For disabled 12 – 24 year olds, their friends and carers. Open to all abilities and levels of experience. At Folk Unlimited you can learn to play, sing and arrange songs and tunes from Britain and across the globe, learn and explore new instruments and accessible technology.

You do not need any experience of playing an instrument or folk music to take part in Folk Unlimited. Love music? We want you to join us!

Carers are welcome to join in too or can wait in our lovely café just outside the rehearsal space.”

More details on the Local Offer, here:

8 What’s the difference between BSL and Makaton?

Makaton is designed to be used to support spoken language, for people with learning or communication difficulties. Makaton is often used alongside speech to help aid children and adults with communication. It is common for people to eventually stop using signs as their speech develops.

British Sign Language (BSL) is a language with its own structure and grammar and uses hand signs, body language, facial expression and lip patterns. It is the language used by the deaf community in the UK and, as with any spoken language, is constantly evolving

The signs used in Makaton are taken from Sign Language and, as Sign Language differs from country to country, so does Makaton. However, unlike Sign Language which has regional variations and dialects, the signs for Makaton will be the same throughout the country.

9 Massage for relaxation treat for carers

“This treat is especially designed for carers who make such a difference in all our communities. (H2020 has no eligibility criteria and all activities are completely free of charge)”

Saturday, 9th February - 11:00am to 2.30pm

RHACC (Formely known as Hillcroft College)

11 South Bank, Surbiton, KT6 6DF

Book your place here:

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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