Probably the best piece I have ever read on this subject. We didn’t have the same sliding doors moment (my daughter’s regression lasted many months) but I recognise so much in your article. Wishing you strength (you will need it). Your nanny sounds tremendous
One of the best pieces I’ve read on becoming a parent-carer. We didn’t have the same sliding doors moment (my daughter has Rett - the “loss” stretched out over a couple of years) but I identify with a lot of this.
Multiple headlines about the first CRISPR 2.0 personalized genome editing and photo of the baby treated
This week's genome editing triumph is a big deal.
Here's why
erictopol.substack.com/p/the-first-...
The chancellor of the exchequer Rachel Reeves has outlined plans to cut several billion from the UK's welfare budget.
Cuts to disability benefits will worsen health and the economy
www.bmj.com/content/388/...
Amy in a love heart frame. Amy is smiling and has auburn hair and bright eyes
NEW: Our post today is dedicated to remembering AMY, @catrionamoore.bsky.social and @edreyesjourno.bsky.social “fierce, funny and fabulous” daughter whose funeral is today. You can donate to Amy’s hospice #DemelzaCharity at the link in the post:
www.specialneedsjungle.com/r...
I doubt outcomes are better in Scotland. One point of difference is that there is no EHCP. We have coordinated support plans (CSPs) but they are rare and toothless so less is money spent in defending the poor provision in tribunals
This is shocking. ITV reporting that even those with extreme disabilities in the unfit to work category are likely to lose money under new government plans. Charities have branded the move catastrophic
“Improvements have been made at the home, and there have been much less incidents reported recently….” Wow. This is hardly reassuring.
An update - social care, in Scotland, is not working for young disabled people
rettisa4letterword.wordpress.com/2025/01/29/w...
#socialcare #AccessAllAreas #rageblogging
It fails all the children, including so-called edge-cases like my daughter. It’s naïve for legislators to imagine that without EHCPs that LAs will cease to prioritise balancing their budgets over the needs of individual children
This has happened in Scotland (CSP not EHCP). Councils then argue that since the child is at special school, all needs are met and the CSP is closed. They can then withdraw support. Despite v. complex needs (Rett Syndrome) interventions written in CSP, eg physio, SLT, were withdrawn from my child
If we have reached the point where the threshold for social care is no longer whether you will be able to live a good life without support, but whether you would actually die, then we are in a very poor place indeed. But that seems to be where we are now: www.traceycampbellact.com/post/social-...
EXCL: The majority of Scots with learning disabilities are NOT being offered promised annual NHS health checks, new data from @scottishlabour.bsky.social shows. The checks were a key SNP post-pandemic pledge to reduce health inequalities, but those waiting say its another "broken promise." STV 6pm
Poster which reads £15.9bn. The value of unpaid caring in Scotland.
New analysis published by Carers Scotland last week shows that in 2022 carers in Scotland saved the public purse £15.9 billion. This is almost equivalent to the Scottish NHS budget (£17.8 billion) in the same year.
It's an astonishing figure, but not one that any of us should be proud of...
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Poster which reads We support an end to care charging. #CarersCantWait
In Scotland, people with support needs pay over £40 million every year in social care charges.
This is putting many disabled people and their unpaid carers at risk of poverty.
We are asking for an end to non residential social care charging in Scotland!
#CarersCantWait
And, honestly, it makes such a massive difference to the whole experience. It is so rare to watch a show without the stress of negotiating an unsuitable building and poorly trained staff beforehand
The most accessible venue we have ever been to is the ABBA Voyage arena. Low, wide ramps throughout. Great views (not stuck at the back behind a pillar, off at the side, or under the balcony with a view of only half the set). Changing places toilets. And well-trained staff. A joy.
