Friday 10 May 2019

(Un)Ordinary Conference


On the 26th March, I attended the (Un)Ordinary conference in Streatham with Laura, one of our Greenwich ALD Research Net Volunteers. Laura was selected out of hundreds of applications to be one of the speakers of the day and chose to speak about how “Being a Mum is the Best Thing in the World”.


This event was organised by the ‘Stay Up Late’ charity. They came up with an idea to host a conference with a difference. They felt that there were lots of conferences about people with learning disabilities but very few speakers actually with learning disabilities. This time, they wanted all the delegates to be composed of professionals and all of those on the platform making speeches to be people with learning disabilities. This was them telling us how they can live ordinary lives.




We arrived to a fully packed auditorium – Laura said she couldn’t believe how many people there were! The event was hosted by Tilly, who has Asperger’s Syndrome and her best friend Del, a beautiful pink stuffed pig. Tilly discovered Del in Clinton Cards and they’ve been inseparable ever since. They opened by saying the emphasis is on the ‘Un’ in this (Un)Ordinary conference but that they preferred the word extraordinary. They explained that this conference was going to cover three key themes; communities, relationships and work.






All the speakers were given centre stage to express themselves in a variety of ways - some chose to speak, some chose to represent themselves through videos and there was even some singing. William decided to sing the “Bare Necessities” song to demonstrate how it should be a ‘bare necessity’ for people with learning disabilities to have jobs. We also had Ben, who showed a video of how he had found solace in the Bashment music scene after difficulties at school and is now well known in this scene.



It was then Laura’s turn. She was understandably very nervous about getting up in front of a big audience but as soon as she got up there it looked as though she had done this hundreds of times before! Laura naturally finds the words to describe the relationship her and her son have. She talked about the fun things they do together and why being a parent is the best thing in the world. She also mentioned her recent work, writing a blog with Sandra Baum, one of our Consultant Psychologists, on the positives of being a parent. Laura received a big round of applause at the end, as well as lots of questions from the audience (6 in total she counted!). Tilly congratulated Laura and described how inspiring she had found Laura’s presentation having always wanted to be a mum herself and being told it wasn’t possible because of her disability.






After lunch we heard from Scott. Scott was told at school he
would never be able to get a job. He proved them wrong by
not only getting a job but now being in a senior position. He
also received a British Empire Medal in the 2017 and as he
quite rightly said, he is “…now waiting for his
Knighthood...!!”. 

I would like to say a huge thanks to the Stay Up Late team
for inviting Laura to speak and organising hands down the
best conference I’ve been to. Laura described the experience
as giving her more confidence and she wants to do lots more
presentations now! She also said she is famous now
because her talk was mentioned in the Guardian and
Learning Disability Today! I learnt a lot from each speaker
and loved the uniqueness of each one. It is clear that this
type conference should be the norm. How else can we learn
about the changes we need to make except by hearing it
from people with learning disabilities directly? They can
share their stories and educate if given a platform. It also
made me and Laura reflect on the different ways Research
Net could present in future as it was great to see such a
variety. It made me realise the importance of the right
support as well. A lot of the speakers explained that with the
right support (and they all had completely different kinds of
support!) that they can lead “ordinary lives”. Rightly so as a
member of the audience asked at the end “When is the next
conference going to be…?!” and I’ll be at the front of the
queue waiting to buy a ticket!

Amelia Ralph-Lewis (Assistant Psychologist, Greenwich CLDT) and Laura (Research Net member)

To read Laura’s Blog click on the link below:


To see Laura’s mention in the Guardian and Learning Disability Today please see below:



 

 



Wednesday 8 May 2019

Oxleas Learning Disability and Autism Bulletin for April 2019





Welcome! The purpose of this bulletin is to keep you in touch with news from the learning disability world in a monthly digest. We hope to include information on the latest policy and research along with easy read information. If you have any requests for information or if you want to share with the Oxleas learning disability community please send them to Steve Hardy or Jill Davies.
 
If you would like to receive an email alert about future bulletins please send an email to Steve Hardy.

All links are written in blue or grey and worked on the 15th April.



Stories of the month!






Speak Up! Be Heard!

The government wants to know how we can make sure that health and social care staff have the right training to understand the needs of people with a learning disability and autistic people, and make reasonable adjustments to support them. They to hear your thoughts about the training, what it will look like and who will deliver it. Have your say at the consultation here.





Petition - Police Officers to have mandatory training in autism and learning disability











A Capabilities Framework for Advanced Clinical Practice in Learning Disabilities and Autism  take part in the framework consultation survey  


                             
Self-taught photographer fights autism stereotypes with his pictures









Learning Disability Pride

















A new publication from NHS England













Introducing learning disability champions in an acute hospital - article


Blogs and Vlogs
A better way to communicate with people with learning disabilities
A long letter to Joey: Learning Disabilities, Epilepsy and Cultural Representation
I have autism, and Theresa May’s awkwardness is my favourite thing about her
'Half of train staff don’t help people with autism’
Healthcare professionals need additional awareness so there is not another case like Oliver's
Moving on! A case study demonstrating the use of the Mental Capacity Act
My experience of 'Care and Treatment Reviews'
Not registering the right support to transform care
Please Stop Assuming a Person With a Disability Doesn't Understand You
Strangers Send Thousands of Rainbow Pictures to Comfort Orphaned Autistic Boy


What Does It Mean To Say That A Person With Autism Has An Extreme Male Brain?
14 Words to Consider When You Befriend My Son With Autism


Book of the month


Sexuality and Sexual Health for Individuals with a Learning Disability


Courses


Positive Behavioural Support - free e-learning


Easy read




The Skills of Expert Healthcare staff – what is important to you?


Events



12th March 2019, Manchester

Learning Disabilities and Autism: Promoting Positive Outcomes



20th March 2019, Manchester
Preventing deaths in people with a learning disability


29th March 2019, London
Growing Older with Learning Disabilities Conference 2019


During March and April 2019, Birmingham and London
The Foundations of Good Support for People with Learning Disabilities


2nd April 2019, Harrogate

Supporting People with a Learning Disability Through Loss and Bereavement


12th April 2019, London
Seminar for counsellors on the needs of adult siblings


25th April 2018, Birmingham
Positive Commitment 2019


25th - 26th April 2019, Birmingham
Together, we are better - Positive Choices



30th April 2019, then every Tuesday afternoon for 8 weeks, London
Research training course for people with intellectual disabilities



23rd - 25th May 2019, Barcelona, Spain
European Congress on Mental Health in Intellectual Disability 



7th November 2019, Newcastle
Learning Disability and Psychiatry Update

Guidance and resources


Love Life: resources for young people with learning disabilities


Management of epilepsy in adults with intellectual disability


NICE guideline set to address variation in provision of services for adults with cerebral palsy
Prescribing anti-epileptic drugs for people with epilepsy and intellectual disability


News involving people with learning disabilities or autistic people


AFC Wimbledon and Charlton stage event for people with learning disabilities - 28th Feb, Wimbledon Times


Age limit at children's hospital emergency unit 'should rise' - 27th Feb, BBC








Appalling sexual abuse by staff of children in custody revealed by nationwide inquiry - 28th Feb, The Independent




Autism diagnoses in NI children up by more than 100% - 21st Feb, BBC


Autistic teenager took her own life after she was locked up in a care unit meant for psychiatric patients that 'cut therapists and employed unqualified staff' to save cash - 3rd Feb, Daily Mail


Autistic people angry at having to disclose diagnosis to DVLA even if driving not affected - 3rd Mar, The Guardian


Birmingham airport cuts ribbon on sensory room for people with autism - 16th Feb, AL.com


Bitty & Beau's Coffee Shop Run by People With Down Syndrome to Open Its Third Location - 8th Jan, The Mighty


Cafe hires people with Down Syndrome and pays them the national living wage - 21st Jan, Metro


Care Quality Commission issues first 'duty of candour' breach fine - 13th Feb, Out Law


Casting a puppet as autistic is a grotesque step backwards - 12th Feb, The Guardian


Christine McGuinness praised for opening up about her children's autism in candid Instagram post - 6th Mar, Manchester Evening News


Dating agency brings 'hope' to adults with learning disabilities  - 23rd Feb, BBC


Devon is shamed for failing children with special needs and disabilities by having significantly weak services - 6th Feb, Devon Live 


Disabled voting guide wins global award - 5th Mar, 3rd Force News


Expansion of budgets for personalised health and care support announced - 21st Feb, Gov.UK


First conservative MP to walk in the shoes of people with learning disabilities - 21st Feb, Politics


Five new secure units for autistic patients set to open in the UK… despite pledge to close them - 25th March, Easton Caller


Government gets DoLS replacement bill through Commons but now must secure peers’ agreement - 14th Feb, Community Care


Helping people with a learning disability to find love - 14th Feb, BBC


Homeless autistic man with tumours told he is not a priority by Cornwall Council - 18th Feb, Charity Today


Inclusive Welsh Theatre Company Wins The Stage International Award - 20th Feb, Business News Wales


If you're a woman with a learning disability, getting a cervical cancer screening can be traumatic – here's why - 4th Feb, The Independent


Internationally renowned learning disability theatre company Mind the Gap bring a spectacular new production to Halifax - 22nd Feb, The Yorkshire Post


LD and autism profile problem worse than MH - CQC chief - 11th Feb, Health Service Journal




Little boy with Down’s Syndrome nicknamed ‘Smiley Riley’ lands work as a model - 23rd Feb, Metro


Local teen shows life with Down syndrome can be full of possibilities - 28th Feb, Atlanta News Now


London Fashion Week - NI model with Down's Syndrome hits catwalk - 22nd Feb, Belfast Live


Man with learning disability lands dream job at Glasgow golf club with support from council - 22nd Feb, Glasgow Live


Mental capacity for handling the internet: Court of Protection - 27th Feb, UK Human Rights

More Colleges Opening Doors To People With Developmental Disabilities - 11th Feb, Forbes


MP Caroline Dinenage spearheads learning disability consultation - 21st Feb, Daily Echo


MP opens Eckington recruitment hub for young people with learning difficulties and disabilities - 5th Mar, Derbyshire Times


Muckamore families welcome police searches but concern about length of investigation  - 31st January , The Irish News


Muckamore: Mum urges end to long-term hospital care - 25th Feb, BBC


New group vows to give people with disabilities a voice - 24th Feb, Halesowen News


NHSI stands down review panel over 'cover up' concern - 4th Mar, Health Service Journal


Parents lobbying for new law on pupil restraint consider judicial review - 25th Feb, LMP Education


People with intellectual disabilities are proud to vote: Give them the chance - 18th Feb, Parliament Magazine


People with learning disabilities missing out on cancer screenings - 22nd Feb, Plymouth Live


Plans unveiled to tackle low life expectancy for those with learning disabilities - 13th Feb, Bridport News


Police Being Trained On How To Deal With People Disabilities, By People With Disabilities - CBS Baltimore


Priory to close 'inadequate' High Wycombe hospital - 12th Feb, The Guardian 


She may be Florida's first lawyer with autism. And she's out to change lives and minds - 22nd Feb, USA Today


Super League: 'Ground-breaking' learning disability rugby league launched - 13th Feb, BBC


Surrey second worst place in country for helping autistic people live independently, says council officer - 13th Feb, Surrey Live


The club hosting nights for people with learning disabilities - 19th Feb, BBC


The common autism myth dismissed as 'completely unjustified' and harmful by the NHS - 6th Mar, North Wales Live


The government is quietly shifting power away from patients to hospitals and care homes - 12th Feb, News Statesman


This is why NHS bosses are demanding more money for social care - 4th Mar, New Statesmen America


Valentine’s launch for friendship group for Falkirk folk with learning disabilities - 11th Feb, Falkirk News




Woman is 1st openly autistic person to practice law in Florida - 16th Feb, Fox 11 


X Factor stars visit Brighton learning disabilities charity Team Domenica - 19th Feb, Brighton & Hove Independent


Reports


Reducing Restrictive Intervention of Children and Young People


Health and Care of People with Learning Disabilities , Experimental Statistics: 2017 to 2018


Making personalised care a reality: The role of occupational therapy


Requests


A consultation is open until 11th March on NICE 'Care and support of people growing older with a learning disability' visit the website.


Research


A novel investigation into the impacts of neuronal mutations on autism-related characteristics in humans has been described

Autism-anorexia link 'must be acted on'


Bullying Differs Based On Type Of Disability, Study Finds


How Music Therapy Affects the Brain in Autism


Injuries the largest cause of death for people with autism: Study


New research into autism smashes our misconceptions


Positive Well-Being May Protect Against Depression in Adults With Autism



Psychotropic drugs frequently prescribed for autistic people




SEXUAL HEALTH ISSUES IN WOMEN WITH INTELLECTUAL DISABILITIES





University of Utah study finds higher suicide risk in people with autism


Virtual reality a promising tool for reducing fears and phobia in autism

Lloyd visits Goldie Leigh!

Lloyd Page from Mencap visits Goldie Leigh! During March earlier this year Lloyd Page who works for National Mencap visited Goldie Le...