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The (in)accuracy of the ‘learning disability register’.
There is understatement, and then there is a ministerial statement on ‘the learning disability register’ in a Lords debate yesterday.
Arriving at a headcount of people with a learning disability in the UK, or in the constituent nations, is no simple matter. But it’s not made easier, when sets of data are held by various NHS departments , Social Service departments, the Department for Education and The Department for Work and Pensions. Ironically the most incomplete set of statistics is probably held by GPs and CCGs.
We have commented elsewhere on the scandal of people with learning disabilities not being invited by GPs to the annual health checks – to which they are entitled. And Public Health England’s ability to plan has in the past been frustrated by the incompleteness of data provided by those whom you would expect to know the most, CCGs and GPs.
Many in the media reacted to government press releases yesterday as if the ‘learning disability register’ was comprehensive and accurate. Some of us know otherwise. Baroness Hollins certainly does, and the Minister admitted: “We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task”.
Note also the question and reply re the vaccination of family carers and home carers.
Baroness Hollins, Crossbench : “My Lords, I welcome today’s announcement that all people with a learning disability on their GP learning disability register will now be included in group 6. However, we know that these registers are incomplete. How will the Government and the NHS ensure that those in England not currently on the register can be added so that they can be offered a vaccine too? Will the Minister confirm that family carers and home carers will be offered vaccination at the same time?”
Parliamentary Under-Secretary for Health and Social Care: We have to work with what we have. The existing register, while not perfect, is the tool that we have for our task. GPs had been encouraged to update registers in advance of the vaccine, as we had several months of knowing that it was coming. I understand that considerable work has gone into that. With regard to carers, my understanding is that they are not currently included in the clarification that came out today, but I am happy to confirm that point with her.
Catch 22 – Access to Child Trust Funds
Oh the irony. The Mental Capacity Act is effectively denying young adults with learning disabilities access as they turn 18, to the money in Child Trust Funds (special savings accounts) opened for them when they were children.
This article on the BBC News website explains this Catch-22 situation, and how to make matters worse, the cost of applying for access to a fund will often exceed the savings sum involved! Teens with learning disabilities locked out of savings
Raising Awareness of the Mental Capacity Act
In March 2014, the House of Lords Select Committee on the Mental Capacity Act 2005 published its ‘Mental Capacity Act 2005: post-legislative scrutiny’ report, celebrating the ethos and achievements of the MCA, but calling for awareness and implementation of it to be extended. Lack of awareness of the Act, especially amongst those who would benefit from knowing about it, was a problem before 2014 – and is still a problem.
The Social Care Institute for Excellence (SCIE) has just published its Updated Mental Capacity Act directory
Well worth taking a look if you have any questions about capacity, deputyship, deprivation of liberty etc.
If you are a carer, best place to start is the page entitled MCA resources for users and carers.
The Care Act – Easements affecting Assessments, Reviews and Changes to Care & Support
What follows was compiled as I tried to respond to a recent helpline call (Essentially this involved a significant change in provision, where the parent carer of ‘P’ believed the local authority was not using an up-to-date and accurate Care and Support Plan in its decision making).
To ensure that my efforts researching Care Act plans and reviews during the ongoing coronavirus crisis, and the time spent documenting that research, are not wasted, I have decided to publish here, in adapted and anonymised format, compiled extracts from recently sent emails. I hope you find this overview informative. The introductory sentence reflects the regrettable situation of many family carers still not being fully aware of the content and import of the Care Act.
…
The key legislation you should know about is the Care Act 2014…
- This is a video introducing it: https://www.scie.org.uk/care-act-2014/video.asp
The Social Care Institute for Excellence(SCIE) sets the standards for people working in social care, so in essence specifies what social services departments should be doing, and to what standard.
- There is actually some (much-improved) information on gov.uk. The Care Act is actually ‘implemented’ via its Statutory Guidance document.
This is the gov.uk introduction to the Guidance: https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance
- Take a look at the section explaining ‘wellbeing’ – it may help to remember, and remind others, that the key consideration of his care & support planning will be P’s wellbeing.
This explains what a broad concept wellbeing is: https://www.scie.org.uk/care-act-2014/assessment-and-eligibility/eligibility/how-is-wellbeing-understood.asp
- In very simple terms the Care Act follows this route in decision making process
o Assess client’s needs,
o Identify which needs are eligible for support,
o Develop a Care and Support Plan to meet eligible needs (whilst ensuring the client’s wellbeing),
o Implement the Care and Support Plan, and monitor (review) its implementation. (Section 13 of Care Act Guidance covers this issue in detail. Section 13.10 states: “Keeping plans under review is an essential element of the planning process. Without a system of regular reviews, plans could become quickly out of date meaning that people are not obtaining the care and support required to meet their needs.”).
- Take a quick look at this: https://www.scie.org.uk/care-act-2014/assessment-and-eligibility/eligibility/checklist.asp on how local authorities should meet eligible needs.
There are shortcuts that can be taken in emergency; the phrase is ‘Meeting Urgent Care Needs’, but I am assuming this is not the case with P
- In normal (non-Covid 19) circumstances, I would expect the local authority to have carried out a recent (re)assessment of P’s needs, especially if a major change in provision is being contemplated.
o Has that assessment been carried out? Have you seen a copy?
o Has it identified P’s eligible needs?
o Have you discussed any assessed eligible needs with social services?
- I really cannot expect you to read the Statutory Guidance (it’s massive!)
o but if you just open the Guidance https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance , scroll down to Section 6, paragraph 6.30 to 6.43, which considers the question of P’s ability to understand and contribute to the assessment process (Please note that I do not know the extent of P’s capacity).
o If you have the time, with the Statutory Guidance document open on screen, hit CTRL+F (‘F’ for Find) and search for ‘Family’ and ‘Consult’; selected relevant results will give you an idea of the local authority’s duties to consult family members. (You may be disappointed).
- I would recommend trying not being too confrontational with the local authority at this stage (although I do not know at exactly which stage of care and support planning for P you have reached).
o It might be best to challenge them on whether their assessment has correctly identified his needs, whether they have prioritised his needs correctly etc.
o If you are discussing placements, discuss/review how each will promote P’s wellbeing.
- I am not saying that the care planning system is perfect. Indeed the Local Government and Social Care Ombudsman expresses serious concerns about the system in his annual report (just published).
- This is a good short commentary on the Ombudsman’s annual report on the Community Care website: https://www.communitycare.co.uk/2020/09/17/council-assessment-care-planning-safeguarding-failings-rose-last-year-says-ombudsman/
!!! CAVEAT – WARNING!!!
The Coronavirus Emergency legislation has eased many of the obligations placed on local authorities by the Care Act!!!
Please see the links below. I also include an extract from the government’s guidance on easements (accessed link 1 below)
I really do worry that this will make it easier to ‘rush things through’. So please see the text highlighted in bold (below) and perhaps be ready to quote it!
- https://www.gov.uk/government/publications/coronavirus-covid-19-changes-to-the-care-act-2014/care-act-easements-guidance-for-local-authorities
- https://www.communitycare.co.uk/2020/07/08/councils-formally-suspending-care-act-duties-equate-compliance/
- https://www.communitycare.co.uk/2020/01/20/care-act-analysis-must-considered-setting-personal-budgets/
“What the powers actually change
The changes fall into 4 key categories, each applicable for the period the powers are in force:
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- Local authorities will not have to carry out detailed assessments of people’s care and support needs in compliance with pre-amendment Care Act requirements. However, they will still be expected to respond as soon as possible (within a timeframe that would not jeopardise an individual’s human rights) to requests for care and support, consider the needs and wishes of people needing care and their family and carers, and make an assessment of what care needs to be provided. Annex B of the guidance provides more information
- Local authorities will not have to carry out financial assessments in compliance with pre-amendment Care Act requirements. They will, however, have powers to charge people retrospectively for the care and support they receive during this period, subject to giving reasonable information in advance about this, and a later financial assessment. This will ensure fairness between people already receiving care and support before this period, and people entering the care and support system during this period. Annex B of the guidance provides more information
- Local authorities will not have to prepare or review care and support plans in line with the pre-amendment Care Act provisions. They will however still be expected to carry out proportionate, person-centred care planning which provides sufficient information to all concerned, particularly those providing care and support, often at short notice. Where they choose to revise plans, they must also continue to involve users and carers in any such revision. Annex B of the guidance provides more information
- The duties on local authorities to meet eligible care and support needs, or the support needs of a carer, are replaced with a power to meet needs. Local authorities will still be expected to take all reasonable steps to continue to meet needs as now. In the event that they are unable to do so, the powers will enable them to prioritise the most pressing needs, for example enhanced support for people who are ill or self-isolating, and to temporarily delay or reduce other care provision. Annex C provides further guidance about the principles and approaches which should underpin this.”
I will stop at this point. That’s quite a lot for you to take in! Feel free to update me – I really do wonder how local authorities are behaving at the moment (I have had only limited ‘feedback’ from Rescare members.).
If anyone wishes to enlighten us here at Rescare on local authority behaviour during the coronavirus crisis, please feel free to contact us by email (office@rescare.org.uk) or via the contact form on this website. I would love to know if and how local authorities are operating their complaint systems. The Ombudsman issued guidance to local authorities in May 2020 on how they should continue to consider serious complaints https://www.lgo.org.uk/information-centre/news/2020/may/ombudsman-issues-guidance-to-councils-and-care-providers , but we are in the dark as to how this has been implemented. We hope to publish more on covid-related issues, in a more structured format, here soon. JR.
Rescare film “Learning Disability the Right to Choose” now available to view online!
On Monday June 8th Rescare launched its film “Learning Disability the Right to Choose” via a well-attended Zoom meeting.
The film aimed to highlight current challenges facing people with learning disabilities, their families and carers; and to clarify and restate Rescare’s future priorities and objectives.
This short film is now available to view via YouTube at this location: https://www.youtube.com/watch?v=9vrhHiJXj_g .
If you have not seen it already, we hope you enjoy it. Please feel free to share this link with others .
Lords consider effect of pandemic on social care.
The House of Lords yesterday debated (via a Virtual Proceedings) the effect of the current pandemic on social care, and especially on the care of those with disabilities or considered vulnerable.
The whole debate (transcript here) makes for interesting reading (There are an awful lot of pledges to change and reform social care ‘flying around’), but the most telling contribution came from Baroness Hollins, who sits as a cross-bencher, and is an expert on learning disability issues, from professional experience, and also as a parent.
Her contribution summed up the effect of the lockdown on people with learning disabilities, and is worth quoting in full: Continue reading
50 Years of Caring. A Parent Writes…
The following text was received from a long-standing Rescare member. As a parent and carer, she contributed to our anthology ‘Bound to Care’, first published in 1996, which collated the experiences of eight family carers. So 23 years later, we can update you with the further experiences on one particular family.
Note that we at Rescare have not edited the text received, other than to correct some spelling errors, to change the layout slightly to improve legibility, and to anonymise the text – so that the author’s daughter is now referred to as ‘P’. No part of the text may be reproduced without the author’s permission.
Fifty years of Downs Syndrome, a parent’s account. Continue reading
Scottish Parliament to consider ‘overarching review of mental health and incapacity law’.
Some news on proposals for legal reform, from north of the border, where they do things differently.
There was an interesting debate in the Scottish |Parliament this week on improving the support for people with dementia and their carers. But Some SMPs broadened the debate to include a general consideration of the laws relating to capacity and incapacity, and the Scottish versions of powers of attorney and guardianship.
I was struck by this contribution from SMP Graeme Day and particular his observations for the need for reform of the laws relating to mental capacity: Continue reading
Learning disability and eye tests.
A quick reminder of the work of SeeAbility
I attended some Public Health England (PHE) events in 2018, where discussions fed into PHE’s proposals for the priorities in the NHS Long Term Plan published this spring.
One event included a presentation by SeeAbility, which was a bit of an eye-opener (pun intended). The key statistic is that children with a learning disability are 28 times more likely than other children to have a serious sight problem!
London Meeting – Saturday 21st September
A final reminder that Rescare will be holding a special meeting this Saturday at the NCVO buildings near Kings Cross.
The main theme is Learning Disability and the Law, but other current issues will be discussed.
The meeting is open to Rescare members and non-members. Members were notified via a flyer enclosed with the recent edition of Resnews.
For the information of others, here are images of that flyer, giving full details of agenda, time and location.
If you are thinking of attending, please notify us (email office@rescare.org.uk )
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The (in)accuracy of the 'learning disability register'. - Rescare
www.rescare.org.uk www.change.org
Jo Whiley's story struck home – I was offered the vaccine before my severely disabled daughter
inews.co.uk
There is understatement, and then there is a ministerial statement on 'the learning disability register' in a Lords debate yesterday. Arriving at a headcount of people with a learning disability in the UK, or in the constituent nations, is no simple matter. But it's not made easier, when sets of data are held by various NHS departments , Social Service departments, the Department for Education and The Department for Work and Pensions....
www.rescare.org.uk/the-inaccuracy-of-the-learning-disability-register/
Seeking signatures.... change.org petition to Stop the closure of HFT residential facility at Furlong Close, Rowde
www.change.org/p/hft-and-wiltshire-council-stop-the-closure-of-hft-in-rowde
Journalist Sam Carlisle reacts to story of Jo Whiley and Frances, with the story of her own daughter, Elvi. inews.co.uk/opinion/jo-whiley-covid-19-vaccine-learning-disabilities-874778 Even angrier than Ian Rankin! "What this pandemic will leave me with is the lasting knowledge that the lives of people with learning disabilities just do not matter to those who run our country."
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