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1 Minute Says It All, 5 Videos, 6 New Resources & 3 Dentists

Updated: May 27, 2019

Dear All


I do honestly believe the SEND Reforms were the right reforms – there was (and hopefully still is) so much opportunity to do things better for our young people. But the implementation was awful on many levels.


I could write a whole SENDspeak on just this and the impact it’s had on families and the statutory services, but I haven’t…


Oh, and there are 5 short videos in this SENDspeak; all worth watching!


1 SEND Inquiry: One minute, says it all…

2 SEND Inquiry: Education Committee tweets

3 SEND Inquiry: the links

4 SEND Inquiry: “SEND success is a journey, apparently, one with no end in sight”


5 SEND Crisis March: this week, 30th May

6 SEND Crisis March: the details

7 SEND Crisis March: Aims & Objectives

8 SEND Crisis: rise in special needs pupils forced to attend out-of-area schools


9 Hospital Abuse Scandal (Panorama): The Great Disdain

10 Hospital Abuse Scandal (Panorama): The Petition


11 Kingston & Richmond Health and Care Plans 2019-2021 – contribute now

12 “All of your skills and knowledge, and all of our skills and knowledge”

13 Interoception and Sensory Processing Issues: What You Need to Know

14 Ten things you need to know about Pathological Demand Avoidance (PDA)

15 Dentistry: call for advice - the responses

16 “Because their legs don’t work, [people] think their brains don’t work”

17 TAG Youth Club – Family Day Out

18 Accessible Information for Young People

19 “I never believed I could be so happy in my adulthood”



1 SEND Inquiry: One minute, says it all…

Video 1 minute. This is the first minute of the final evidence session from the SEND Inquiry last week…

https://parliamentlive.tv/event/index/6fcfdf00-2070-4dd5-a959-e2b0f96aeed9?in=10:03:15&out=10:04:14



2 SEND Inquiry: Education Committee tweets ‏This is the Twitter account for the SEND Inquiry, it’s a simple way to follow some of what was said in the final evidence session.


@CommonsEd

We've reached the end of oral evidence for our #SENDinquiry, so what happens next?

💭 Now, we're thinking about what we have heard and what we want to say.

📝 The next step will be writing our report and making recommendations to Government.


On Tuesday we held our final evidence oral evidence session as part of our #SENDinquiry. We questioned @nadhimzahawi, @NickGibbUK and Dr André Imich, SEN and Disability Professional Adviser, @educationgovuk “


The link includes a 1.23 minute extracted video on EHCP assessments:

https://twitter.com/CommonsEd/status/1131496380420284418


Tweets from the final evidence session

During the evidence session there were 11 live tweets (11 tweets); the link below give you this Thread, plus the comments from the wider world: https://twitter.com/CommonsEd/status/1130787710418006016



3 SEND Inquiry: the links

The first link is to the webpage will includes all published evidence, plus videos and transcripts of the twelve evidence sessions.

https://www.parliament.uk/business/committees/committees-a-z/commons-select/education-committee/inquiries/parliament-2017/special-educational-needs-and-disability-inquiry-17-19


This link will take you video of the final evidence session (from which I took the extract above).

https://parliamentlive.tv/Event/Index/6fcfdf00-2070-4dd5-a959-e2b0f96aeed9



4 SEND Inquiry: “SEND success is a journey, apparently, one with no end in sight”

Published 23rd May, by Special Needs Jungle (author Catriona Moore)

From the commentators at Special Needs Jungle; a narrative of the final evidence session.


“ “It’s a journey.” That’s what SEND minister Nadhim Zahawi said, repeatedly, at the final hearing of the House of Commons Education Select Committee’s SEND inquiry. This time, he and school standards minister Nick Gibb were in the hot seats, along with the Department for Education’s professional adviser on SEND, Dr Andre Imich.”

https://www.specialneedsjungle.com/whole-new-send-world-families-dont-live



5 SEND Crisis March: this week, 30th May

On Thursday 30th May, parents across the country will be marching to highlight the crisis in support for children and young people with special educational needs or who are disabled.


How it happened (abridged from the SEND Crisis Facebook page):

18 months ago, three parents all had an awful time with SEND access. They spoke a lot, to each other and on EHCP related forums. In a fit of frustration, one set up the Facebook group - and the campaign was born.


A few months later the group had grown massively, and they managed to get help with admin and to start their Twitter account. They built relationships with organisations and got the support of NEU.


Every step of the way, members were asked for input into events and objectives.

“…it's important to recognise the work and collaborations that have made this campaign happen. Thanks to National Education Union for your help and guidance. Thanks to area coordinators for investing your time, money and heart and soul into making it happen in your area and thank you to all the members and supporters, you have spread the word and helped us to grow.


Whatever happens after Thursday, it's been amazing to watch and be part of such a huge group of people coming together for one purpose!”



6 SEND Crisis March: the details

“There are planned marches across the UK on 30 May to raise awareness of failings to those with SEND, their families and education providers who are expected to provide an appropriate education on continuous budget cuts. We would like to invite parents, carers, young people, families, school staff and anyone else who supports this to take part in the London March"


The schedule: “Please join us for the submittance of our online petition at Downing Street at 12pm.

We will then be rallying in Parliament Square from 1pm with guest speakers.”

The speakers include Tania Tiarraro (Special Needs Jungle), Carrie Grant (broadcaster and campaigner), Dean Beadle (autism speaker) and Kevin Courtney (General Secretary of the National Education Union)


“If you are attending the London March please confirm your attendance on both the National event page and this local page too. (link below) Thank you”

https://www.facebook.com/events/1753604738077454/?ti=cl



7 SEND Crisis March: Aims & Objectives

“We are #SENDNationalCrisis campaign and we are demanding change for the most vulnerable children and young people in our society.


OVERRIDING OBJECTIVES

· The needs of the child to always be placed at the centre of all decisions and actions.

· Legal and financial accountability for local authorities in their treatment of young people with SEND and their families.

· An end to the culture which encourages the blaming, shaming and dismissal of parents of young people with SEND.

FUNDING

· Funding to be increased to realistic amounts per young person, to be provided directly from Central Government and to be ring-fenced;

· Assessment to be carried out independently of the funding body;

DIAGNOSIS/ASSESSMENT

· A recognised pathway for diagnosis for all shades of neuro-diversity, which is the same nationwide and which gets young people in front of experienced diagnosticians within a maximum time of 6 months from first referral.

· An end to the nonsensical distinction between “educational” difficulties and “medical” difficulties;

ACCOUNTABILITY

· One central point for all aspects of legal issues to have power over Education Health and Social Care;

· All policies to be consistent across the country with clear guidelines and rules surrounding conduct by local authorities and expectations in terms of parent partnership and enforcement of procedures;

· For anyone providing false information to be prosecuted and to be fined for failing to support the law, applying to all professionals involved in the process;

· A recourse other than costly Judicial Review when local authorities fail to follow orders of the Tribunal;

· Free reinforcement of EHCP plans where evidence can be provided to prove a professional has acted not in the best interests of the young person or other misconduct;

SUPPORT FOR FAMILIES

· A board of parent governors with enforcement powers to oversee parental/ carer treatment and inclusion during the SEN/ EHCP process;

· Quality training for independent family support advisors;

· Legal aid and bank of independent professionals to reference and access pre-tribunal;

· Mandatory training on SEN law and funding for all SENCO and Heads;

· Parents to have a choice of what school is named in the EHCP and this to be considered and any refusals of schools to be clearly explained and reasons outlined in a formal document;

· Mandatory, nationally accredited training for those drafting EHCPs;

· Parental consultation and evidence for expenditure of national fund for each child"



8 SEND Crisis: rise in special needs pupils forced to attend out-of-area schools

Here is another view on the same SEND Crisis March; this time looking at school placements.


“Almost 20,000 children with special educational needs such as autism are attending school outside their council area because of shortfalls in local provision – with the number rising by nearly a fifth in two years, the Observer can reveal.

Figures obtained under the Freedom of Information Act show that some children are studying hundreds of miles from home as the special education needs and disability (Send) system struggles to cope with a funding crisis.”

https://www.theguardian.com/education/2019/may/25/rise-in-special-needs-children-forced-to-attend-distant-schools



9 Hospital Abuse Scandal (Panorama): The Great Disdain

Published Tuesday, 21 May 2019

I can't begin to discuss the Panorama last week. Instead, thoughts from Chris Hatton an academic at the Centre for Disability Research, Lancaster University. Here he writes about his research experiences the day before the Panorama programme on mistreatment of young people in care.


“I can’t help feeling that we’re at a point where those in a position to champion the human rights and flourishing of people with learning disabilities and autistic people to the benefit of society as a whole fundamentally wish that people with learning disabilities and autistic people just didn’t exist.”


“The things that dreams are made of

For me, this disdain needs to be tackled head-on. This might be big, but I don’t believe it’s especially complicated – if anything, it might be less complicated than what currently exists to try and pretend people with learning disabilities and autistic people don’t really exist. The conditions that make discrimination more likely also need to be fundamentally addressed. Ways for all children to be educated and spend time together, in whichever ways work for every child and work for those close to them. People with learning disabilities and autistic people taking on positions of power. Education and economics that support everyone to flourish in whatever ways suit.”


“And, if things have got worse, this to me means that they are not inevitable and can change for the better.”

https://chrishatton.blogspot.com/2019/05/the-great-disdain.html



10 Hospital Abuse Scandal (Panorama): The Petition

“Government of the United Kingdom: End the abuse of autistic people & people with a learning disability in inpatient units - Sign the Petition!


The National Autistic Society started this petition to Government of the United Kingdom

The events witnessed in tonight’s [22nd May 2019] Panorama ‘Hospital Abuse Scandal’ documentary, where vulnerable adults who are autistic or have a learning disability were abused and mistreated were truly shocking. This abuse must have no place in modern society.

“This is not a question of money, or funding – millions of pounds are spent on keeping vulnerable children and adults locked up hundreds of miles from their homes. This is about where the money is spent and what kind of service it is spent on.”

https://www.change.org/p/government-of-the-united-kingdom-end-the-abuse-of-autistic-people-people-with-a-learning-disability-in-inpatient-units



11 Kingston & Richmond Health and Care Plans 2019-2021 – contribute now Deadline 31st May 2019

“People living and working in Richmond and Kingston are invited to give their feedback on the draft local Health and Care Plan for 2019-21. The plan has been developed by NHS organisations, the Councils and voluntary organisations in the borough who have worked together to review the local community’s health and care needs for the future. It also follows an extensive period of engagement with local people and health and care staff.


The plan describes the vision, priorities and actions which no single organisation can achieve alone: where health, social care and the voluntary sector working together will have maximum impact. This draft plan should be read in the context of other local health and care strategies.


You can find the full and summary versions of the draft plan here, where there is also a short survey asking for your views on the priorities and actions that have been set out.


Kingston

https://kingstonletstalk.co.uk/health-and-care-plan


Richmond

https://haveyoursay.citizenspace.com/richmondccg/health-and-care-plan-2019/consult_view



12 “All of your skills and knowledge, and all of our skills and knowledge”

Profound Impact Day 2019

For Profound Impact Day on 21st May Mencap focussed on the issues facing people with PMLD in hospital, which ties in with their Treat me well campaign.

“We know there are huge issues in hospital with how healthcare professionals involve people with PMLD and their carers in partnership. We want to challenge this.


What we want

Alongside PAMIS, PMLD Link and Centre 404 we want to use Profound Impact Day to:

· People with profound and multiple learning disabilities (PMLD) are, like everyone, unique individuals.

· Like everyone, they need inclusion, respect and with the right support are able to live fulfilling lives.

· help healthcare professionals understand the importance of working in partnership with people with PMLD and their supporters, and how to make this happen

· equip people with PMLD and their supporters to feel prepared for a hospital visit and understand their rights in hospital.”


New resources on this page

“We've created a number of resources to improve the experiences people with PMLD, as well their supporters and the healthcare workers treating them, have in hospital.”

https://www.mencap.org.uk/get-involved/campaign-mencap/profound-impact-day-2019


Watch and share our video (1.54 minutes)

“We brought together people with profound and multiple learning disabilities, their supporters and healthcare professionals to discuss how partnership can help improve the experiences of hospital care.”

https://secure.mencap.org.uk/en-gb/watch-and-share



13 Interoception and Sensory Processing Issues: What You Need to Know

“Interoception is a lesser-known sense that helps you understand and feel what’s going on inside your body. Kids who struggle with the interoceptive sense may have trouble knowing when they feel hungry, full, hot, cold or thirsty. Having trouble with this sense can also make self-regulation a challenge.”


“Kids with sensory processing issues have trouble organizing information from the senses. This means they can be sensitive to and misinterpret information from the five traditional senses, or sight, smell, hearing, taste and touch. Some kids may also have challenges with the sixth and seventh senses—proprioception and vestibular.


But there’s an eighth and lesser-known sense, too. It’s called interoception. Here’s what you need to know.”

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/interoception-and-sensory-processing-issues-what-you-need-to-know



14 Ten things you need to know about Pathological Demand Avoidance (PDA)

From StephsTwoGirls blog

“Our younger daughter is autistic. She was diagnosed with ASD (Autism Spectrum Disorder) at the age of two and a half, over eight years ago.


This blog began the day autism was suggested to us by a paediatrician. Around a year later we stumbled across the description of Pathological Demand Avoidance on the internet and went on to read the book Understanding Pathological Demand Avoidance syndrome in children. We finally felt like we could begin to understand and help our little girl. Now I want to share those insights with others.”

https://www.stephstwogirls.co.uk/2018/06/ten-things-you-need-to-know-about.html



15 Dentistry: call for advice - the responses

Last week SENDspeak asked for advice on SEND sympathetic dentists or prompts. Here are the responses; all have been anonymised.


#1 Kingston hospital “You asked for feedback on sympathetic dentists. I can wholeheartedly recommend Mr. Naini at Kingston Hospital Orthodontic department.

Mr Naini is a consultant at Kingston, and he has been pivotal in my child's treatment. My child has ASD and couldn't have managed the extensive treatment required to reposition his jaw and so reduce the gap in his bite.

Mr Naini has said that he is happy to be recommended for children with SEN.

He is a truly wonderful man, gentle and kind. We have been privileged to have been under his care for the last 13 years.”


#2 Whitton dental practice

“Just to say the NHS Dentist, Whitton Corner Dental Practice have always been very supportive, in spite of Dentists moving on.

I phoned them and explained my child’s diagnosis. They suggested booking joint appointments so I would go first and model what was to happen. It took a couple of appointments for my child be comfortable about sitting in the chair but now my child gets in there before me.

Last appointment we saw a new Dentist and he was concerned that my child wouldn't cope with any treatment. As my child is currently still very young (7), we discussed ways of preventing the need for treatment. The Dentist's view was that treatment and sedation should be the very last resort.

They have always been very understanding and based in a building with other NHS resources. Theo has his speech & language assessments there so recognised the building which also helped with the transition.”


#3 Community Dental Services

This service is for residents of NE Hampshire and Surrey. The best option locally would currently appear to be the Community Paediatricians. Both links are given below.

“A friend’s recommendation was to take my child to this dentist which is suited to children with SEN. She said her Paediatrician recommended them.”

https://surreynehantscommunityservices.nhs.uk/our-services/community-dental-services

Local Community Paediatrician:

http://www.hrch.nhs.uk/our-services/services-directory/hounslow-and-richmond/community-paediatrics



16 “Because their legs don’t work, [people] think their brains don’t work”

Stevenage pupil taking GCSEs using eye movement

Video: 1.10minutes

“A 16-year-old boy with cerebral palsy is taking his GCSEs using just his eyes. Will, who attends Lonsdale School in Stevenage, is unable to talk or write, so will be using a specially designed computer that reads his eye movement.

He will be given 700% more time to allow for the computer to recognise the letters being communicated.”

(Note: TAG Youth Club are currently fundraising for Eye Gaze to be used with the Magic Carpet and Magic Mirror)

https://www.bbc.co.uk/news/av/uk-england-beds-bucks-herts-48269031/stevenage-pupil-taking-gcses-using-eye-movement



17 TAG Youth Club – Family Day Out

Following a call out on Twitter, TAGs; family day trip to Little Hampton will take place on Sunday 18th August. This is an activity for the whole family and TAG Youth Workers will be running a selection of activities during the day! The cost will be £10 per person.

T: 07557397934

E: info@tagyouthclub.org

W: https://tagyouthclub.org



18 Accessible Information for Young People

​​This is where you can discover information that has been created in an easy read format, about a variety of services and support.

“As well as the accessible information in this section, there is other information that you might find interesting on other parts of the AfC info and SEND Local Offer website. This information might not be in Easy Read or Accessible format.”

https://kr.afcinfo.org.uk/pages/local-offer/information-and-advice/young-people-s-zone/our-advice-area



19 “I never believed I could be so happy in my adulthood” A message to young people from Dean Beadle

Dean spoke at a recent conference in Kingston and Richmond. Dean took some time to record this special message for young people in Kingston and Richmond.

Video: 47 seconds

https://kr.afcinfo.org.uk/pages/local-offer/information-and-advice/young-people-s-zone/our-advice-area/autism-information


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


With best wishes, Romany

E: info@sendspeak.org

W: www.sendspeak.org




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