2020

Months

1. December 2020
2. November 2020
3. October 2020

December 2020

Contents

1. Summary
2. Action, question and alert cards
3. Consultation by theme:
4. The countryside
5. NHS 111
6. Personal Independence Payments and Transport
7. Accessible toilets
8. Future member-led consultation
9. Ideas for future sessions

Summary

There were three virtual groups run this month due to Christmas break.

There were 3 themes that came up consistently:

1. Ableism and Stigma
2. Personal Independence Payments (PIP) and Transport
3. The Christmas party 😛

A previous questions card on the experiences of people with ASD accessing driving licenses was revisited. As a result, 2 new action cards were raised.

One of the members shared a reflection on their experience of participation this year:

“I am really glad to see the movement we have made with accessibility. I am really excited about the drop-in sessions. Unfortunately the way we have operated until is try to talk about every SEND in 2 hours, but very broad. And mostly white and neurodivergent needs. More to do! Starting to move towards being more representative.”

Action, question and alert cards

2 Action cards were raised this month:

1. Post code lottery for SEND Transport provision – PIP does it on points, mobility points raised requirement for travel card. Inconsistency for transport access. All YP agreed to raise.
2. There is an increased waiting time for people who declare additional needs/medical conditions – inconsistency in how different declarations are investigated for driving licenses. All YP Agreed to raise,

Consultation by theme

The countryside

The countryside team asked the group to consult on two areas:

1. provided more information to the public at the entrance to countryside sites and online
2. a natural play and exploration space at Norbury Park, near Leatherhead

Here was their feedback.

It is important that communities are involved in any projects both during and after:

“Make sure that the community is involved”

“Involve community … flowers and plants they like”

“Community garden people can plant, share plants, work together”

Accessibility considerations need to ensure that both people with visible and invisible disabilities are considered:

“Make sure that its accessible for disabled people”

“I’ve got lots of fields near me, accessibly difficult on Stiles”

“Make it sensory friendly – low sensory and high sensory”

“A quite space area”

“Quieter isolated spaces as well as wide open spaces = no steps but also suitable for sensory needs”

“Make sure that the floor is comfy for those who like to sit on the floor”

“Trellis helps hide away and behind plants. Good to have touch and smell for some but not for others”

“Have a wheelchair swing”

“Have somewhere high up for people to chill out in, like a nest, but make sure it’s safe.”

“Have different coloured pathways that lead to different areas”

“Maybe have different areas, one for disability, some for ‘moody teenagers’”

“Teenager area where they can be moody”

The young people shared their concerns for the safety of people with additional needs and disability when using these areas:

“‘Normal people’ don’t always tolerate us.”

I am “Worried about the ‘normal people’ who are unkind”

“Public park – how do we know if people will be kind, semi-bullying kids target us”

Signs could say: “this park is open to those who are tolerant of ethnicity, gender, disability”

Members really want the park to have chickens …

“Have chickens in the park”

“Chickens!”

NHS 111

Young people can have difficulty identifying which helpline they need to access and as a result can call NHS 111 when they should be contacting a different service or are in crisis:

“There’s so many helplines I don’t know who to reach out to. I just need to find the right one that suits my SEND need”

“I have used 111 probably a few times now. Twice maybe? One time they were helpful. One time there were not helpful. One time they had to call the ambulance and police – because I said I wasn’t going to be safe. It didn’t make any different, it kind of worse.”

Services often do not have SEND knowledge:

“The cognitive function for some with SEND is different from others.”

“There should be someone on duty who has additional needs and disabilities speciality”

“I think it would be good if they had someone who could help people with special needs in MH crisis”

“Services should have independent mental health advocates, but they don’t have ones for SEND. Which they should because you’re at a higher risk.”

“Additional needs and disabilities is a massive umbrella term … There should be “helpline for professionals working with SEND YP with MH”

For some young people, NHS 111 can help them get to A&E when they need it:

“I hate A&E. So I always called 111. I have had positive experiences. Helps me get into A&E when I need to go because I would never call 999.

However, the experience is often a lengthy process:

“Every time I have to speak to a clinician or nurse. Because of all my additional needs. I need a specialist to deal with me. Increases my waiting times and I’ll usually have to go through a number of different people – escalating through the scales”

Even when young people with additional needs and disabilities get to A&E, services are often not equipped for their specific needs:

A&Es don’t tend to have the ability to handle people with Chronic Illness.

I often know what I need when I arrive in A&E but I have to wait and see a doctor even though I knew what I needed. I just can’t handle it myself and there is no provision for that.

Personal Independence Payments and Transport

There is frustration around the changes in the Personal Independence Payment (PIP) point system for mobility. Some of our members cannot drive because of their additional need or disability and so these changes make getting around harder.

“Borough to borough differences” in transport provision

“It’s ridiculous, I have a disabled train card, but I am no longer entitled to a bus pass”

Sometimes the time it takes to get PIP is too long:

“It took me about a year to get my PIP”

There seem to be difficulties for people with additional needs and disabilities getting PIP points:

“This kid completely wheelchair bound, cannot walk at all. Got 0 points for mobility PIP”

“My mum [throat specialist] has heard similar stories … a guy turned up with a breathing tube to a session … didn’t get PIP”

One of the members also shared their experiences when applying for a blue badge:

“My brother is in a wheelchair most of the time. I applied for my blue badge. But because I was under anxiety it immediately went through. But my brother as a wheelchair user had to go through the whole system and at no point was he asked if he used a mobility aid”

We will be discussing this further in 2021

Accessible toilets

“I use a mobility aid but sometimes it is quicker to use the cubical because unlocking the door is too much hassle”

“Anyone can buy radar keys online.”

Some people are only “apologetic” when you are in a wheelchair.

“It is just annoying that they only seem to mind if they’re in a wheelchair. If I am standing there then people are like, oh it’s fine. But if its my brother then people are like “oh no what have I done!”

We will be discussing this further in 2021.

Future member-led consultation

Several members are interested in leading a consultation on transport!

We will be discussing this further in 2021.

Ideas for future sessions

• Cooking
• Origami
• Languages
• Yoga/ Adaptive Yoga
• Music/ Karaoke
• No swearing
• Everyone showing what talents they’ve got
• Sign Language
• Y. P to teach us something in a session
• Show & Tell

November 2020

Contents

1. Summary
2. Action, question and alert cards
3. Consultation by theme:
4. Anti-bullying pledges
5. Ableist language
6. The term “SEND”
7. Re-naming and re-branding SYAS
8. Merchandise

Summary

Action, question and alert cards

The members raised 1 new Action Cards this month:

1. Ableist Language is prevalent in diagnosis, treatment and society. SYAS would like to highlight the importance of asking people how they self-describe as well as the need to move away from offensive terminology. SYAS recognise that the words themselves are not always the problem – the intent is important too.

There were also 2 new Question Cards:

1. YP wanted to know if there is information available for Adults if they think they might have an SEND need to access support, diagnosis and treatment on the Surrey County Council website
2. One of the members shared some information of her experience as a young person with ASD trying to access a driving license. It was felt that her experience excessive may have been unfair. What are the guidelines? are they reasonable?

This month we reviewed Action Card 8: SYAS would like to know more about Dyslexia and for the UVP Team to do more social media and blog posts on Dyslexia. Including what the procedure is if you think you have dyslexia as a CYP living in Surrey.

Action Card 8 was closed this month because members were:

• very happy with the new celebrity/inspirational people blogs, in particular the one on Jamie Oliver
• pleased to see that a Surrey County Council policy had been made and released
• satisfied with the information available on the Surrey County Council website
• Happy with the activity during Dyslexia Awareness Week. For example, social media posts and one of the member’s blogs being re-shared and getting a large response.

Consultation by theme

Anti-bullying pledges

As part of Anti-Bullying Week, members made a couple of pledges to work on through the year to actively tackle anti-bullying:

• “Continuing to raise the voices of our members on bullying and stigma”
• “To improve our communication skills” – e.g. Makaton, BSL, Braille, more online content etc.

Ableist language

Below you will find many quotes from the feedback member’s gave during discussions on ableism. They are extremely powerful.

In summary: needs are not “special”, stigma and negative experiences can taint certain words, members want to make a preferred terminology report using a traffic light system: green = ok to use, amber = ask person before using, red = never use. Several members reported the word retard is being used a lot.

One young person reported that they get called this regularly at school by their peers for having dyslexia.

“Autistic is being used as an offensive word for non-autistic people.”

“Road men and others make fun of disability in my school.”

“I don’t want to be made out to be “special” because I have needs.”

“People find high functioning and low functioning very offensive”

“Most people assume or say “you don’t look autistic or disabled”

“I would rather say I have additional needs then say that I’m disabled.”

“I’m still human”

 “I prefer ASD to autistic. I don’t like the word Autistic. I don’t like the sound of the word.”

“Sometimes it’s not the words themselves, but the attitudes. Language used to express attitude but how people talk about it or about how they use the word. You can use to word disabled in a derogatory fashion. The words are important as well.”

“Everyone identifies with Disability differently. Some Deaf and Blind people don’t consider being deaf and blind a disability. But for me I am chronically ill so it doesn’t matter where you put me, I’m still in pain all the time. Autism is a social disability so with the right accommodations it can be accommodated. Neurodivergence especially is challenging to describe. Some disability you might have better experience, but with my chronic illness I am not gaining I am only losing. Honestly a lot of time it’s about asking. It is about how someone self-describes. My disability is fluid.”

“Other types of physical disability may or may not be fluid. Mobility aid is an empowerment. It can be freeing rather”

“I don’t like disability because I had to apply to disabled living allowance and the way they talk to you is like you are not able to do anything. I was separated out from everyone else at university. They email me separately etc. So everyone around me knows I am disabled. Everyone around me assumes that I am not able to do things. Whereas I can’t do some things some days, but I can other days. Phone calls are difficult for me because I am a selective mute. In person I can write a note.”

“I have had assessments from the DWP twice. The first one I just cried in the corner for most of the assessment, so they gave me PIP. This year I was reassessed and will continue for a few years. They upped it. But I know quite a few people who … I have a friend who got assessed zero points even though she can’t leave the bed.”

“The language they use is an official form from the government. Ableist language is used on the basics of everything. Where and what do you change. No matter what you chance is hard.”

“Some people have reclaimed disabled – some people have reclaimed some not. It can remind you how crappy people are to you because of how it has been previously used”

“The whole idea of how that word was used to me it made it had to accept my diagnosis. Basically, telling me I have no ability to imagine or no way to show empathy. Basically, saying I am a crappy person has made it a lot harder to accept who I am and access the help that I needed. Everything written about me is written in this way. They had only read the language on my report and not met me. Then I spoke to them on the phone and they realised the mistake. Encouraged me to go to university.”

“A friend of mine has a borderline disability (low cognitive) they’ve got a degree in music. They have lots of other things going on. His low cognitive disability doesn’t need to limit him. He has low cognitive ability when it is convenient for them. Only disabled when it is relevant to them not doing something.”

The term “SEND”

“I try to forget what that the special part exists. I don’t mind the term”

“Special should be replaced with additional needs”

 “I think you should take the special out and put additional”

“It shouldn’t say SEND; it should just say additional. It is not just in school but out in society. People might make fun if they don’t know what it means!”

“Are additional needs alone enough? … I call myself disabled”

Re-naming and re-branding SYAS

Members decided that they would like to remove the acronym SEND from the name of their participation group. Together they came up with a new Acronym that they feel represents the values of the memebers:

ATLAS: Accept, Teach, Listen, Access, Support

It was decided that the logo would be based loosely on the god Atlas, only instead of one man holding up the world, it is several people with different needs (everyone).

Members liked the association of ATLAS with maps as they are helping to guide professionals to improve Surrey services through the consultation work they do.

Members decided that they would like to have a launch event for the name and logo. This is planned for January!

Merchandise

Members would like more items with their logo/name on for them to have but also to be shared at events and help raise their profile. The ideas were:

• Fidget spinners
• Stress balls
• Pencils
• New hoodie for new name
• Pin badges
• Shopping bags
• Water bottles

October 2020

Contents

1. Summary
2. Action, question and alert cards
3. Consultation by theme:
4. Rainbow Lanyards and pin badges: LGBTQ+ support
5. Cooking Skills
6. Mental health and SEND stigma
7. What does participation mean to you?
8. Letters from services
9. Stress Awareness
10. Bullying

Summary

This month, SYAS members shared some extremely powerful and personal stories. With their permission this newsletter shares some of their quotes and experiences with bullying.

Week to week there were three themes that came up repeatedly:

• Stigma: mental health and SEND
• The power of participation
• Bullying

As a result of these themes coming up regularly, 2 new action cards were raised.

Action, question and alert cards

There are two new action cards this month:

• Services need to address the relationship between SEND and mental health
• Bullying continues to be prevalent and the young people believe that education on stigma as well as mental health and SEND throughout year groups and staff networks would help to decrease this

Five action cards were closed. Four of these cards related to Covid 19. SYAS recognised that there has been a national failure, and as a result, three of these action cards have been passed onto the Surrey Youth Cabinet to pursue:

• Why was SEND friendly work not provided during lockdown?
• Why were COVID guidelines for universities not UK wide and left up to the decision making of individual universities?
• Why weren’t schools opened gradually so that pupils with SEND and mental health needs could get the extra support they required for returning to face-to-face lessons after lockdown?

One of the closed action cards related to SYAS and other young person participation groups run by the user voice and participation (UVP) team wanting to create LGBTQ+ action cards, especially around mental health & LGBTQ+ as well as working to reduce the stigma around the LGBTQ+ community:

• The UVP team has committed to posting more LGBTQ+ social media content
• The views of child and young people on the LGBTQ+ community were shared with the Surrey and Borders Partnership (SABP):
  • SABP will be providing webinar/training for professionals working with children and young people about people who are LGBTQ+
  • SABP will be creating an LGBTQ+ support pack
• LGBTQ+ action cards can now be raised.

One very important question card was raised this month:

• Are there protections in place to prevent letters containing private information from being sent to the parental homes of young people were safeguarding concerns have been raised?
  • SYAS raised that this is especially important for CAMHS letters which can contain very sensitive information.

Consultation by Theme

Rainbow lanyards and pin badges: LGBTQ+ support

I think that this is a “good idea and pronoun badges also may be a good thing to have. Gives people visible support and safe space options.”

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One of the SYAS members shared that they knew someone who had been pushed into the canal for wearing a rainbow lanyard:

“The rainbow lanyard may make people a target” of crime.

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As a result the group discussed how this is an example of why increasing visibility of support and safe spaces is important.

However, SYAS agreed that people need to make informed choices and be aware of the risks they may need to take to achieve visibility of causes that are important to them.

Cooking skills

In recognition of National Care Leavers Week (26th October – Sunday 1st November 2020), SYAS have decided that they would like more information on essential cooking skills and simple recipes shared on their website.

Examples of the types of information and recipes SYAS will be sharing:

• Super quick meals
• Low sensory meals
• Low cost protein sources
• Microwave mug cooking (e.g. mug cakes)
• Vegetarian and vegan options
• Leftover meals
• Low risk cooking skills (e.g. recipes that do not include the use of knives or blenders.)
• One pot meals
• Popcorn!

SYAS will be testing out some Microwave mug cooking during their Virtual Christmas part this year!

Mental health and SEND stigma

It became very clear from this consultation that bullying is prevalent for young people with mental health and/or SEND needs.

“If you are different you are going to get bullied”

There is “not much understanding about how to stop [bullying and stigma] … people are still ignorant”

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Some young people feel like their schools, colleges, peers and professionals judge their abilities solely by their diagnosis.

What I can do and achieve is “underestimated by the college and my peers because of my diagnosis“

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SYAS agree that there needs to be more public visibility of people with SEND needs. From a young age people should be educated about the effects of stigma, mental health conditions and SEND.

“Educate people so they can stop being mean”

“It should be taught as early as possible but adapt it for different years”

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Importantly, SYAS raised that stigma is not only something they experience from their peers, but the professionals they work with as well. Everyone needs this education and it “should be repeated and brought up regularly”.

What does participation mean to you?

“SYAS has helped me build friends but not just in SYAS, outside too, as it has given me confidence.“

“It is great to know that there are professionals out there on the other side of the table, knowing their not judging, but more understanding, they are trying to help get our voices heard so we can have a better experience in the services we use“

“I think the UVP team are amazing. You are nice people. Nice staff and young people. SYAS are amazing and so are the UVP team.”

“I think the staff are nice and the young people are nice too. You can really trust the staff and young people. It also keeps you busy in the week, so you know what you are doing on your timetable”

Letters from services

A lot of the letters that SYAS members receive from different services are aimed at their parents/guardians/carers.

“I would like letters sent to me because I am an adult!”.

“Mum reads them. Honestly wouldn’t want letters aimed at me. I wouldn’t take it in.”

Whilst there is some level of feeling like this is ok, young people also feel like they are missing out on information because it is not made accessible to them.

“It is better if [letters are] quite short and straight to the point”.

“I feel like I am missing out on information”.

“Unnecessary for letters to be full of jargon”.

Part of the problem is that so much irrelevant information is sent out, meaning important information is -hidden- within that.

“Can be annoying sometimes because they include content that isn’t necessary!”

“Sometimes you will get multiple letters about the same thing!”

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When sending out letters for or about young people with SEND, it is important to remember that SEND can be hereditary:

“SEND can be hereditary … My mum hates letters. Worth considering when sending out letters”.

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Several members of SYAS raised a very important question card regarding letters from services for young people with difficult home lives:

“Sometimes when young people are in difficult family situations … letters can contain very private information in, especially CAMHS letters. It should be considered whether letters should be sent home if there are safe-guarding issues raised, may put YP at risk if gets into wrong hands”.

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Overall, SYAS members feel like letters from services should only be sent when necessary, be more accessible and young person friendly.

“Sometimes letters are sent that don’t need to be sent”

“Everything should be easy-read so then everyone can access it. It east read is not possible, at least as easy as possible.”

“I would prefer text messages.”

Stress awareness

“There are two types of stress, physical stress and mental stress … a lot of the stress I experience is more physical”

In the last week of October, SYAS looked ahead to stress awareness week (2nd- 6th November 2020) and considered what causes them stress and what techniques they use to manage their own stress.

“I look at the news every day and it does stress you out a bit”

Themes that cause SYAS members stress:

• Homework
• Friendships
• Bullies
• Covid 19 and lockdown
• People
• The News
• Being adopted
• Trauma

“I have some coping strategies when I am in a bad mood”

Stress management techniques used by SYAS members:

• Playing video games: “I play my x-box a lot to manage stress”
• Pets: “I play with our cats”, “Honey is my support dog”
• Colouring in: “I like to colour in pictures of dogs”
• Weighted blankets and jackets: “make you feel like you are being hugged”
• Fidget Toys – there was big agreement in the group about these!
• Rocking instead of fidget toys: “can be painful sometimes to use fine motor skills”

Bullying

This month SYAS have mentioned bullying a lot throughout group sessions. This has included both past and present cases.

With Anti-Bullying Week coming up (16th – 20th November), SYAS wanted to share some of their personal stories to help raise awareness:

“When I get bullied, I am quite defenceless. I don’t know what to do. I don’t always mention it as I don’t know if anyone can help me”

“I got really badly bullied, and there was one incident that was cyber bullying. I couldn’t sleep all night”

“Whenever I think about the online bullying I had I get really scared … the police had to be involved because it was so serious … it stopped because I blocked and reported them.”

A boy “started bullying me. Then we became friends. Then he started asking me to buy things after school … he tried to gain my trust by trying to stop other people from bullying me and then used that to try and get me to buy him money and sweets”. I told him “if you are just going to use me for money and sweets, then I am not going to talk to you anymore. Then he started bullying me again”.