Here to help with questions relating to learning disability and its impact on family carers
It’s not as if this is a new issue; we have highlighted previously both the disturbing general statistics on people with learning disability and their experiences of the NHS i.e with regard to morbidity and life-expectancy, and specific cases of individuals entrusted to the care of medical professionals.
We therefore read with interest this article in the ‘i’ by Paul Gallagher on the deaths two patients with learning disabilities Please take a look.
We note especially the failure of the two families involved to gain funding for legal representation at the coroners’ inquests.
We are now at Episode 2 of Rachel’s story (Rachel is a young girl with learning disabilities, who has been admitted to hospital with stomach pains). “The doctor gives Rachel two pieces of paper – one white, one green. But what should she do with them? Listen to the story to step into Rachel’s shoes.” All materials (the video story, resources on learning disability and hospital visits, and details of how to contribute your personal experiences of hospital) are available here
As caresUK states in the email recently sent seeking contributors…
What you tell us makes a difference
Last year over 7000 carers shared their experiences with us. What they told us last year made the front pages of newspapers, was quoted over and over again by politicians and policy makers. This helped us bring the voice of carers and experience of carers into discussions on a whole range of issues from reform of NHS Continuing Care funding to how the Government can better support people to return to work after they are no longer caring, making changes where carers need them.”
Obviously, a similar or higher number of contributors to this year’s survey is carersUK’s target. If you are a carer, especially a carer for someone with a learning disability, why not take the opportunity to contribute views based on your own experiences via this survey ?
Charles Henley is a long-standing friend of Rescare, who several years ago, worried about trends in social care (based on his personal experience in the sector), decided to highlight the dangers of an over-reliance on the concept of ‘care in the community, citing specifically the consequent closure and dilution of services such as day-centres. Charles maintains a website ‘Learning Disabilities Problems‘, which he introduces as follows: ‘This site was originally set up to create awareness of the rapidly increasing decimation of Care in the Community and the need for unity of purpose whether carers required respite, residential or day care support.’ The site is well worth a visit.
In January 2018, Charles Henley prompted by the changes at Scope, wrote to the chair and other members of the All Party Parliamentary Group on Learning Disability His submission, analysing events in the recent past and considering future prospects, and suggesting a more active role for the APPGLD, was re-published on various social media outlets, and copied to Scope. We publish the text of in full below. Please now read on…
I have configured my user profile so that an alert is triggered whenever a key word or phrase in used in Parliament, either in debate, or in written statements, and whenever key ministers speak. I cannot recommend too highly this utility to you. It is free to use (although the charitable organisation providing this facility always seeks donations). You can either register for emailed alerts on topics that interest you, or make ad-hoc searches for the use of any phrase or expression in Parliament. Continue reading
It is unfortunate that to read The Times online, one needs to take out s subscription. This means that many will be unaware of, and unable to access, the articles and correspondence on the subject of autism and more specifically Asperger syndrome, its diagnosis, and employment
On Feb 5th, alleged ‘hacker’ Lauri Love was in the news when he won his appeal in the High Court against his proposed extradition to the United States. Google ‘Lauri Love’ to find full details in news sources other than The Times e.g. BBC News
On Feb 7th, journalist Alice Thomson, who had interviewed Lauri Love a year ago (getting an insight into not only his special skills with technology, but also the extent to which he was affected by his autistic spectrum disorder) published and article headed ‘Adults with autism deserve better than this. The case of Lauri Love is a reminder of the care that people on the spectrum need but also of the skills we ought to use.’
On Feb 8th, The Times published a response to Thomson’s article by Dr Mike Shooter, which was headed ‘Autism is vastly over-diagnosed. It’s the parents’ way out’. Shooter, a past President of the Royal College of Psychiatrists and a former Consultant in Child and Adolescent Psychiatry even described autism as ‘a convenient way out for parents who refuse to accept the responsibility of their child’s behaviour’.
Hardly surprisingly, Shooters comments provoked outrage, anger, and bafflement in many quarters. Continue reading
I was alerted by a Rescare member to the recently launched Contributions Policy Consultation by Oxfordshire County Council, which “seeks views on proposals that change the way Oxfordshire County Council charges for adult social care services. These services support adults living at home (for example, home care, day care and transport) and in residential care.”
Here is the Council’s webpage on the consultation . I’m still trying to find the time to read and absorb all the information on this and all the pages linked to it.
Helpfully, there was this article on the consultation in Community Care online on 5th Feb, although I am still struggling to understand all of of the proposals. In particular, this one: Introducing a default disability expenditure allowance of 25% of disability benefit and no longer providing the allowance to people who do not get disability benefits. People will be able to request an individual assessment if they feel this means their allowance is too low. Where did this phrase ‘default disability expenditure allowance’ come from?!?
Before Christmas Stockport (where my ASD son is in supported living ) launched a consultation on proposals to amend charges for non-residential services. Why do I suspect that Oxfordshire and Stockport are not the only local authities who will consult on social care provision? Anyone know of anywhere else?
Learning from safeguarding adults reviews
Events in Birmingham on 14 September and London on 20 September
Webinar online on 26 September
The Department of Health has commissioned SCIE and RIPfA to improve the quality and use of safeguarding adults reviews (SARs). There are three upcoming events on the theme of ‘Making the learning from Safeguarding Adult Reviews (SARs) accessible through a national library’.