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Kingston Parent Carer Informer


Welcome to the newsletter from Kingston SEND Parent Carer Forum: keep up to date with all the work we are doing to make sure the voice and needs of SEND families are heard.
 

Co-production Update

One of the main roles of the Kingston Parent Carer Forum is to work closely with the Local Authority and service providers on projects that affect our children and young people. The aim is to use a co-production model to ensure your voice is always part of services.

  • It's full steam ahead for the Special Education Needs Education and Disability Information, Advice and Support Service (SENDIASS) consultation. We asked for a flyer to share with you everything that is happening next. You can find the flyer linked here and hopefully you can attend one of the workshops (dates listed in Coming Up.) These sessions will provide a short information presentation, a chance for questions and are being held both online and in person. The plan is that we can answer a short survey. Make sure to join in to shape the future of this service when it is commissioned again in 2023. 
  • The Autism in Schools pilot project was launched on 26th April. We will be attending training alongside leadership from the pilot schools as well as being involved in the Occupational Therapy walkthroughs at the school to make an initial assessment of sensory environment. We are looking forward to seeing how we can develop Parent Carer Forums within the schools as the term goes on. This is an exciting scheme that has support from the Autism Education Trust, the NHS and the National Network of Parent Carer Forums.
  • Following on from our SEND Review Special issue newsletter, we are working on our next steps with the support of Achieving for Children and will be sending out information on Facebook in the coming weeks.

 You can find the full minutes to our fortnightly meetings published here on our website. https://kingstonpcf.co.uk/news/minutes/ 

Consortium Meeting update

 

Achieving for Children (AFC) SEND Futures Programme Director, Ashley Whittaker chairs a monthly consortium for parents and carers to discuss ongoing projects and it is a place to raise issues directly with those in a position to make changes and answer questions.

  • At the April Meeting, Jo Steer from the Emotional Health Service gave an informative presentation about the current system for accessing mental health support for your child - this included the challenges of the waiting lists and how they are supporting this, including a Autism Spectrum Disorder post diagnosis service.
  • Anxiety is one of the largest issues effecting the wider population of children and young people. The Kingston PCF  expressed concern that a wide range of parents are expressing concern about school refusal. Karen Lowry shared a number of helpful links to support Emotionally Related School Avoidance:
  • We had a further discussion at the May consortium about the difficulties for children who are on a diagnostic pathway, for example for ADHD but who also still need help and support in addition to diagnosis. We are working closely with AFC to help improve the experience of referral and seeking help. If you need support for your child, there is information about the Emotional Health Service, referrals and waiting lists here on Achieving for Children's website.

Don’t forget any parent or carer can attend these monthly online meetings. You can find the minutes on the AFC website. The next one is  Wednesday 7 June, online at 12 till 1:30pm.If you would like to attend email sendlocaloffer@achievingforchildren.org.uk

What we have learnt: Supporting Autism in Schools


We were lucky enough to hear from Rowan Foster at the Autism in Schools launch event, a young person diagnosed at 14. As well as sharing her difficult start in her home life, she was able to share what had helped her in school. Her talk to our group was to inspire us all to get it right when it comes to this project and her words about the experiences at school were a powerful reminder of how school can be taxing for autistic young people.

The key message was that school is a "high pressure social environment." This meant for Rowan that she would mask while at school, learning to be like neurotypical people. She would feel like other people "appear to have a guidebook" when they arrive which made navigating school social environment and school rules trickier.


Here is a list of areas she was able to identify that would be more challenging within school:
 
  • Sensory Environment - this is changeable some people will struggle with hustle of hallways, where others will be able to cope. It is an assumption that all people with Autism don't cope with sound.Understanding individuals comfort level will help make reasonable adjustments for these people.
  • Sensory reaction to uniform: it may be necessary to make reasonable adjustments to accommodate difficulties with wearing certain fabrics, for example
  • They may not do homework, school was for work and home needs to be a separate place.
  • If masking at school, they may need a safe space outside of school
  • Managing with school rules: these may seem to be arbitrary and if they do not "make sense", the person may not want to follow them
  • The person may be more vulnerable to bullying and equally "may not be taken seriously." because an upset is caused by a "missed social cue"
  • May be more vulnerable to friend abuse because in some cases missing social cues can "make them seem more child-like" School needs to understand this vulnerability.
The main point that Rowan was able to make was that when there were teachers who were able to understand and support her and make adjustments it had a big impact on her education. She was able to be in the library a lot of the time and still learn when she wasn't able to be in class. Hopefully this insightful information can guide the next steps in the Autism in Schools project.

What we have read

Our most popular links on our Facebook over the last few weeks are here:
 
The Council for Disabled Children shared the link for the book "Disabled Children - a legal handbook"  an accessible guide to the legal rights of disabled children and their families in England. It is free to view online

Read the handbook here: https://buff.ly/3It4dpT 

Radar Keys
Contact shared how you can access disabled toilets countrywide -did you know that parent carers can unlock 9,000+ public toilets in the UK using a Radar Key?

Get yours for just £4 at Fledglings, our non-profit shop 👉 fledglings.org.uk/products/radar-key Find NKS facilities near you at toiletmap.org.uk!

Ambitious about Autism shared a "Transition to employment Toolkit"

We know how challenging it can be for young autistic people to get into employment. Check out our Transition to employment toolkit that we have created to address this issue.

The toolkit contains resources and editable templates for post-16 professionals, young people and employers. Download it here bit.ly/3iryKdt

Cost of living crisis - 6 things all families with disabled children can do now

We are extremely worried about how today's huge 54% energy price cap increase will affect disabled households — who already pay £600 more per year to power life-saving equipment...Contact has written government and will be taking further action over the coming weeks. Get involved now by signing up for our #OutOfEnergy campaign updates: contact.org.uk/out-of-energy

They have also created a checklist of 6 things all families should do NOW to make sure they get the support they're entitled to 👉 bit.ly/CostOfLivingChecklist

 

Coming Up

Achieving for Children are running a series of workshops for ALL Parent/Carers to consult on commissioning the SEND Information Advice and Support Service (SENDIASS)

Online Monday May 9th 11am - 12pm
Online Monday May 11th 8pm - 9pm
In Person, Everyday Church, Kingston, Monday 16th May 10am - 11am
In Person, Twickenham Exchange (opp Twickenham Station) Wednesday 25th May 1pm to 2pm
To book you can complete the booking form linked 

Kingston Parent Carer Forum are holding their next Care to Share event online Monday 23rd May 11 - 12pm
https://www.eventbrite.co.uk/e/care-to-share-w-kingston-pcf-tickets-304940965637

Join us for an informal chat and get to know the members of the PCF Steering Committee and other SEND parents.

We would like to hear about your SEND experiences, good and bad! So that we can raise any concerns with local service providers. If you have any questions or topics you would like us to discuss, please contact us at help@kingston.co.uk

Kingston Parent Carer Forum are running a free online event with Cerebra: Accessing Public Services Toolkit. Thursday May 26th 2022, 10:00 - 12:30 pm​

https://www.eventbrite.co.uk/e/accessing-public-services-toolkit-tickets-326408234817
 

Kingston Parent Carer Forum are running a free online event with Cerebra: Accessing Public Services Toolkit. Thursday May 26th 2022, 10:00 - 12:30 pm​

https://www.eventbrite.co.uk/e/accessing-public-services-toolkit-tickets-326408234817

The aim of the workshop is to support families who are encountering difficulties in relation to the provision of health, social care and education support services. The workshop isn't about giving legal advice or solving individual issues, but about general strategies that parents can use to get the services that they need for their child and family.

 

You Can Help! 

We are looking for more members for our Steering Committee and there are always projects that we need more parent and carer voices so get in touch if you can help - help@kingstonpcf.co.uk Learn more about us on our website

 

Do you find newsletter too jargonny- let us know! We are working to make our update as accessible to everyone!

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