Image of the Houses of Parliament and Big Ben. The sky is cloudy.
Carol Boys OBE, Chief Executive of the Down’s Syndrome Association provides an initial response to the Down Syndrome Act draft statutory guidance consultation.
Read more: https://loom.ly/mv4dCzA
Did you see that the much lauded school census data on DS is also a damp squib? The 'DS data collection' consisted of schools being asked to identify the primary and secondary impactful educational needs for each pupil - with a new DS code being one of the options and therefore not mandatory. 😂
New school census data about pupils with Down's syndrome isn't going to be published after all, due to 'data collection issues'. (Schools were given autonomy to report on what they considered to be each pupil's two most important learning needs).
Who would have thought it, eh?! 🙄😂
According to the latest Parliamentary written answer referencing the Down syndrome Act, publication of the world-leading DS Guidance has moved from happening this summer to 'in due course'.
Who would have thought it, eh? 🙄😂
A few years ago as the Down Syndrome Bill was introduced into Parliament by Liam Fox MP it became clear that a key person working on it was also the COO of Turning Point UK, it was drafted by a pro life evangelical Barrister….
Book launch.
Visual story of our hospital stay at start of year
Hospital admitted today: “Staff sometimes take a step back & leave the loved one or carer to provide much of the care.”
That carer was me
Stayed 24/7 doing all care while @DWP stopped both PIP & CA
Reality of unpaid care 🧵
**NEW** guidance for HCPs to use when implementing the #MentalCapacityAct for adults with a #LearningDisability.
Inc template documentation, guide to reasonable adjustments and useful flow chart
#FOAMed #MedSky #NurseSky
www.england.nhs.uk/publication/...
Such elitism is already having a negative impact and I agree, it is hugely irritating.
It’s getting real!
Available June 5th.
Whilst I appreciate that organisations like @dsa-uk.bsky.social have people w DS at their heart, I was sad at two of their recent posts - mainstream EHCPs and social care charging - both of which could have referenced 'people with LD including those with DS'. Neither issue was DS exclusive. 😔
"An exhilarating journey from ancient philosophy to the contemporary era exploring how people with learning disabilities have been marginalised, excluded and even erased from cultural and historical record. A must-read."
Sara Ryan
(Justice for Laughing Boy)
Gonna get lost under the news avalanche that is the local election results, but here are the 'Term of Reference' for Baroness Louise Casey's commission on adult social care. Bit of a cloudy soup I thought www.gov.uk/government/p...
We are committed to stand with the trans community, whatever it takes.
Will you join us?
goodlawproject.org/crowdfunder/...
"This book is both heartrending and gorgeous. It crosses the line many times but, ultimately, it’s about love. He teaches us humanity."
Miriam Margolyes
Published June 5th, available for preorder now.
Happy birthday! Have a lovely day 🎂🕺🌞
Trump’s tariffs on automobiles will (according to business analysts) strip £6billion from the West Midlands region alone.
I live minutes away from JLR and many locals rely on the factory for work.
This is devastating.
He then nailed his colours to the mast by proposing amendments to our abortion laws making it harder to have an abortion if the fetus has DS.
Many people think the Act is exclusive and divisive and that all people with LD (ID) should have equal access to the measures that ensure they flourish.
Here in the UK, the 'Down Syndrome Act Guidance' is due to be published in the summer. It was instigated by a Conservative Member of Parliament aided by a number of anti-abortionists from the DS community.
Hmmm, the “Protecting Individuals with Down Syndrome Act” is an anti-abortion bill.
Who would have thought it.... 🤔
Much welcome news that @dsa-uk.bsky.social are playing an integral part in formulating the guidance around the #DownSyndrome Act.
www.downs-syndrome.org.uk/news/news-re...
Image shows an X post from Lee Anderson MP in which he congratulates himself for attending a DS Policy group event in Parliament and exclaiming his support for people with DS. This is accompanied by a beaming photo of the MP flanked by a selection of people with DS.
Yesterday I dipped back into the Dark Place and really wished I hadn't. (For context, there is STILL no sign of the long-awaited 'world-leading' Down Syndrome Guidance, just a lot of anti-abortion propaganda and photo opps)
🤢🤮
Labour’s reported disability benefit cuts are not just about budgeting but a belief: paid work is a virtue (and people who don’t perform it deserve a worse life than everyone else).
My col. in tomorrow’s paper. www.theguardian.com/commentisfre...
So do I!
A leaflet from @dsa-uk.bsky.social with an easy to understand summary of the recent JR Consent Order concerning Councils clawing back Direct Payments and imposing 'blanket' surplus policies. Please share with anyone who would benefit from knowing this.
www.downs-syndrome.org.uk/about-downs-...
If you’ve been listening to File on 4 today about people with #LearningDisabilities and autistic people being held in mental heath units, you may want to purchase this book.
‘Beautiful Lives’ explores how we got learning disabilities so wrong.
Yet another story of appalling neglect of people with learning disabilities, and autistic people.
www.itv.com/news/2025-03...
Teams and Zoom are platforms where I have meetings imposed on me by professionals in which I inevitably have to fight to retain the care and support we so desperately need for our younger son.
I am sad to see Skype go as it is my 'safespace' where I talk to my elder son, whom I miss dreadfully.
"We need a specific learning disability act that sets out enforceable policies to improve the lives of people with learning disabilities."
This is what we have always needed, instead of a divisive, toothless (and invisible!) Down Syndrome Act.
