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You can listen to the interview with Angela Hassiotis here:
The mATCH Study: People with autism detained within hospitals – defining the population, understanding aetiology and improving care pathways
Peter Langdon and colleagues have published a paper on people with autism detained in hospitals.
Background to the study:
Some people with autistic spectrum disorders (ASD) are detained within hospitals because of the risk of violence, but we know little about the relationship between autism and this risk, nor do we fully understand the differences within this group and the implications for clinical care. There is little information about the most appropriate care-pathway for this population. There is a lack of evidence linking risk of future violence and ASD, and there is evidence that diagnosis alone is not an appropriate predictor of outcome from secure hospitals. It is more likely that comorbid factors, related to neurocognitive functioning and personality explain the relationship between violence and autism. Considering that secure beds are expensive, it is important to clarify the relationships between these variables to help manage risk carefully, target resources correctly, and ensure care pathways are appropriate. We have developed a sub-typology of people with ASD who have been detained in hospital. While these subtypes have face validity, they have not been examined thoroughly for people with ASD detained in hospital either in respect to treatment needs or outcome within the hospital care pathway.
More information here:
https://www.researchgate.net/project/The-mATCH-Study-People-with-autism-detained-within-hospitals-defining-the-population-understanding-aetiology-and-improving-care-pathways
Vulnerable people could lose vital care, warn charities
Thousands of people with learning disabilities could lose vital care after Government ruled that sleep-in carers be paid the national minimum wage, causing dozens of leading charities, including Mencap, to face insolvency after HMRC demands a bill of around £400m in back payments.
Following two tribunal cases, the Department for Business, Energy and Industrial Strategy (BEIS) altered guidance in October to state that organisations must now pay the national minimum wage for all hours, meaning that charities who provide overnight care will have to increase pay from the flat rate of £25-£35 for a sleep-in shift to £60.
Around 200 disability charities, including Mencap, will be affected and are said to face a bill of around £400m for six years of back payments after the new guidance was issued. Charities have warned that they cannot afford the huge sums demanded by HMRC and that people who need overnight care may lose this “vital” service as a result of the bills. Mencap alone support around 5,500 people and are to be “majorly impacted”, whilst for smaller care providers the financial impact might mean that some may lose this support all together.
“We all recognise that our social care colleagues do some outstanding work and are some of the lowest paid, but we cannot pay them if we do not have the money and we only receive money from government sources,” said Jan Tregelles, chief executive of Mencap. “178,000 of the most vulnerable people in our society need this help and may lose it,” she said.
It is thought that the bill will have a devastating impact on the quality of life for those with serious learning disabilities who may not have access to an overnight carer as a result of the new ruling. Tregelles said, “having someone stay overnight ‘at home’ makes the vital difference between ‘living a life’ and spending the rest of their life in a hospital setting.” http://www.independent.co.uk/news/uk/home-news/charities-insolvency-threat-warning-night-carers-back-pay-mencap-hmrc-a7848911.html
Mencap launches petition to protect sleep-in support
“178,000 PEOPLE IN OUR SOCIETY need help and may lose it. Government changes to the interpretation of the law on pay has created a £400 million liability for care providers that they cannot pay. The Government created the problem so only they can fix it.”
Sign the Mencap petition here https://www.mencap.org.uk/
‘Don’t miss out’: Annual Health Checks Campaign
Mencap in collaboration with NHS England learning disabilities programme has produced a fantastic new campaign and set of resources about the Learning Disability Register, Annual Health Checks, and Summary Care Records.
This is all about encouraging people with a learning disability to get better healthcare, by letting people know that doctors and other healthcare workers can provide extra support and advice. The main message is to make sure you tell your doctor that you have a learning disability, so that they can add you to their register.
Please help us to share this important message! – Tell your doctor you have a learning disability and they can check if you are on the learning disability register. If you are not, they can arrange for your name to be added. This means you will be offered extra support to make things a bit easier. And, importantly, you could get an Annual Health Check. This information can be shared with other doctors and nurses, so they can make things easier for you too.
The campaign is called ‘Don’t miss out’ www.mencap.org.uk/dontmissout and the hashtag for social media is #dontmissout
The direct link to the guides and resources is: https://www.mencap.org.uk/advice-and-support/health/dont-miss-out/dont-miss-out-guides
The resources include:
- main guide about joining the learning disability register and why it’s so important;
- guide for supporters of people with a learning disability about the register, Annual Health Checks, and Summary Care Records;
- template easy read letter to complete and give to your doctor about joining the learning disability register;
- easy read guide about joining the learning disability register and why it’s important.
There’s also a really snappy animation:
https://www.youtube.com/watch?v=7gANZupyBHM
A BBC Ouch magazine podcast: What happens to my disabled son when I die?
Mark Neary has a recurring nightmare.
He dreams that six months after his own death, his son Steven – who has autism and learning disabilities – will end up in a residential unit like the one in which he was once illegally held.