I have just been alerted by Rescare trustees to a post on the Special Needs Jungle forum entitled ‘The emotional impact of parenting a disabled child’.

The article cites especially the resources available on the website Affintyhub.uk , created by Jo Griffin, a Counselling Psychologist and a parent carer. Here, when faced with (sadly typical) feelings  of frustration, helplessness, anger, guilt and isolation, parents can  be assured that they are not alone in these, and seek reassurance and strength by learning of the experiences of others, through resources linked to its ‘Words of Wisdom’ page . 

Jo Griffins contribution to the article  includes not only links to the results of others’ research into this topic, but also the results of her own research, published on Affinityhub.uk . Her concise 6-page report is well-worth reading.

The article concludes with Angela’s list of her own ‘therapeutic strategies’: Be realistic, Self-Care, Become aware of unhelpful feelings, Remember that feelings pass, Good nutrition, Trust your parenting, Quiet the inner critic. Read the article in full for Angela’s advice in each of these categories.

Affinityhub.uk , from what I can seen so far, offers a wide range of useful resources  for parent carers. I have just made a note to add it to the Rescare ‘resource library’ as soon as possible…

Two debates this week in Parliament focused on the crisis in Special Education provision.

One particular focus was on the financial strains that  a dysfunctional system is imposing on both local authorities and parents, whilst simultaneously setting them up against each other  via a failing assessment and appeals processes. Another issue considered was the (rising) level of exclusions, and the rising level of children being educated at home by exasperated or desperate parents (as the regulatory apparatus for home-education creaks under the strain). Please follow the links cited below – but be warned that it will be difficult to avoid exasperation and anger,,,

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Warning this is a bit complicated! “The dividing line between the use of the MHA and the MCA DOLS is fiendishly complicated (a senior judge described it as like putting your head inside a washing machine and spin dryer)”. 

Lucy Series (legal expert, academic and blogger) has just published a thorough but informative blog article on Psychiatric Detention under the Mental Capacity Act 2005.

• She explains that psychiatric detention takes place under the Mental Capacity Act as well as the Mental Health Act 1983, but with weaker procedural safeguards
• She emphasises that psychiatric detention under the Mental Capacity Act 2005 mainly affects people with dementia and learning disabilities
• She expresses over proposed legislative changes e.g. Mental Capacity (Amendment) Bill: “Current and proposed reforms to mental health and capacity laws will weaken safeguards and support for thousands of people with dementia or learning disabilities in psychiatric settings”

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We have previously cited and endorsed journalist Ian Birrell’s scathing articles on the treatment of children and adults with autism and learning disabilities in ‘secure hospital facilities’ i.e. Assessment and Treatment Units (ATUs). 

Ian has now reacted angrily to Health Secretary Matt Hancock’s commissioning of an ‘investigation’ by the CQC  (“yet another review”)

Please now read Ian’s latest article , which first appeared in the i newspaper on 7th January and remains available on inews online.

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Having recently attended events organised by Public Health England around the topic of how to improve the health and consequent life expectancy of people with a learning disability, and aware of the findings of previous  research on the issue stretching back beyond the Marmot Report of 2010, (sadly) I was not surprised by the contents of a report just published (5th Nov) by University College London (UCL) Institute of Health Equity (IHE), entitled ‘A Fair, Supportive Society’

This is how the Press Release for the Report introduced its findings:

Shocking new report on children with learning disabilities: Half aren’t diagnosed in childhood; those who are won’t collect their pension.

The Bill is progressing through Parliament, and reached the report stage this week (21st Nov).

Ahead of this milestone, the Government has now published its amendments to the Bill.

These amendments are described by Alex Ruck Keene as ‘long-awaited’ in his post on the Mental Capacity Law and Policy website .

Thankfully for the lay-person, Alex cites a concise 10-point summary of the amendments by fellow expert Tim Spencer-Lane. Worth reading! Continue reading →

Headline on Sky News website last week (4th Nov):

“Review ordered into ‘barbaric’ treatment of patients with autism and learning disabilities

More than 2,300 people have been treated in secure hospitals since 2015 where practices include the seclusion of patients”.

Please read the full story

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Legal expert and blogger Lucy Series has just published a brief blog post on the Mental Capacity (Amendment) Bill.

It is brief because she is on holiday – hence the title ‘Some thoughts from the Lakes’!  But its brevity makes it eminently readable.

Lucy  describes her and others’ concerns about the Bill; essentially its lack of clarity, its deviation from the Law Commission proposals and its potential to limit vulnerable people’s access to justice.

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Now receiving some feedback from posts and blogs on learning disability and/or autism, and health and obesity.

One correspondent with experience of the Camphill movement , and of Botton village in particular,  drew our attention to the evidence submitted by the Botton Village Families Group (BVLG), firstly at its ‘Choice for Intentional Community’ presentation to MPs and peers in Sept 2015, and latterly to the Parliamentary Housing, Communities and Local Government Committee in 2017 during its Inquiry into Social Care: specifically, to a paper submitted by Dr Marcus van Dam, of the Danby Surgery, North Yorkshire (the surgery which serves Botton Village), entitled ‘A healthy way of life’. Dr van Dam’s article is concise, and makes for an interesting read. It also gives some background information on Botton (up to 2015). Continue reading →

Further to a posting a week ago citing two articles in the ‘i’ by journalist Ian Birrell, in which we observed that “Ian is clearly seething with rage, and we suspect and hope that he will not give up on this issue”, we can report that a further article by Ian appeared on Sunday 28th October (and with a slight reworking on the 29th Oct in the Monday edition of the ‘i’).

The article headlined “Young people are being locked away for years because they have autism and learning disabilities. Some never make it out.” is available to read here. When re-published a day later the headline ran “The care system remains twisted – Incarcerating people with learning difficulties is inhumane”

Please read the article: Ian reports that his citing the case of ‘Beth’ three weeks ago, prompted a response from the Health Secretary and Beth’s removal ‘from solitary’; but he has clearly been informed (by parents and family carers) of many others who have been ‘interned’ in hospitals and short-stay(?!) facilities. Ian describes their stories as Dickensian, and clearly feels that the agenda for change post-Winterbourne has failed.
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