So what do you do?

You are a health / social care professional. You have read up on the lawfulness of funding panels – but you now find yourself required to attend a panel to agree funding on a large package for someone with a substantial need for care and support. The panel has some esoteric title – but it is really a ‘rationing’ panel. Cases are often delayed (often sent back for more information) and care packages generally reduced (never increased).

You have in the past raised issues about risk and questions about urgency however these have been stonewalled. This causes you significant personal and professional concern – not least the risk posed to the persons in need, who are being left in dangerous unmanaged circumstances. Not only are people who don’t have first hand knowledge of the individual’s circumstances questioning / disputing packages of care you consider necessary, but they are also questioning your assessment and leaving you holding the risk.

 

What should you do?

It’s a difficult situation. You are working within an organisation that does not appear to be acting in a reasonable or, indeed, in a lawful way. Clearly the people you are assessing (and for whom you are care planning) are able to complain – but you know full well all the reasons why they are unlikely to do this. You could point them in the direction of an advice agency – but that could put you in an invidious position and there is a considerable shortage of support of this kind.

What do you do if senior officers are actively challenging you – when all you are doing is trying to follow your judgment and the law? In the case of a complaint’s investigator who considered she was being bullied – she contacted the ombudsman – without success (see ‘Omg … will it never end’).

This website focuses on the rights of disabled people, carers and their families, but it is patently obvious that day in day out countless front line workers in many (but not all) local authorities and the NHS face these challenges. It would be good if someone was able to write a piece explaining what can be done. This is a subject that the School of Law at Leeds Univeristy (Cerebra LEaP project) hopes to research but pending this it would be valuable to have ideas about what can be done. It may have to be an ‘authors name withheld’ piece, for all the predictable reasons.

Suggestions – in confidence – would be welcome.

Photograph of ‘Llanfaglan’ by Richard Jones -@lluniaurich

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Direct Payments: ombudsman’s report and research findings

Coinciding with a major research report[1] concerning the direct payments system – the Public Services Ombudsman for Wales has issued a hard hitting report[2] illustrating the problems with such payments in Wales.

The Ombudsman’s report describes a council that managed to get just about everything wrong in the way it calculated the amount of a direct payment and then (when the failure was patent) failed to set about remedying its error.  The complaint spans a period of almost six years and even at the end of this the ombudsman concludes that:

the remedial action taken by the Council was piecemeal and it lacked customer focus. From the information I have seen, I am not satisfied that all the arrears have been paid. Furthermore, the Council has not acknowledged the full extent of the failings in this case or offered a proper apology to Mr A for the impact on him and his family.

The Council accepted that there was a significant need for the family to have short breaks care – but failed to commission the care – such that the family agreed to have a direct payment to enable it to employ carers for this purpose.  The Council then used a flawed process for calculating the amount of the direct payment and (when this error was obvious) failed to reimburse the family for the full financial shortfall; failed to comply with the relevant guidance issued by the Welsh Government; failed to properly investigate the complaint; and exacerbated the problem by creating substantial delay.  The full ombudsman’s report can be accessed by clicking here.

 

Many of the failings identified by the ombudsman are problems highlighted in a research report[3] published by the School of Law, Leeds University Cerebra Legal Entitlements and Problem-Solving (LEaP) Project.

The research report found that direct payment rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It concluded that in many council areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.  Its key findings include:

  • that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff;
  • that the difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff;
  • that there was a lack of knowledge by families as to how Direct Payments were calculated and what the actual rate was in individual cases ;
  • that strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.

To access the full research report, click here.

Photograph of ‘Gwyr’ by Richard Jones -@lluniaurich
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[1] L Clements, S Woodin, S McCormack and D Tilley Direct Payments for Disabled Children and Young People, and their Families (Cerebra 2019).
[2] The investigation of a complaint against Conwy County Borough Council.   A report by the Public Services Ombudsman for Wales: Case No 201800208 dated 31 July 2019.
[3] L Clements, S Woodin, S McCormack and D Tilley Direct Payments for Disabled Children and Young People, and their Families (Cerebra 2019).

‘Omg … will it never end’

It is not every day that an ombudsman’s report refers to an investigator’s note saying the above.  Not every day that the ombudsman: asks a council to reflect on its obligations under the European Convention on Human Rights and the Equality Act 2010; refers to the number of inaccurate references a council has made to legislation; concludes that a council gave the impression that it was seeking to influence the outcome of an independent review of a complaint; refers to a council’s claim as being ‘disingenuous’.

For all our misgivings about the inadequate funding of the ombudsmen impairing their ability to hold councils’ to account[1] – the fact that reports of this nature emerge – revealing how some authorities operate in practice – is important.

Hopefully the local authority in question[2] will implement the ombudsman’s recommendations and take a long hard (and reforming look) at the organisational culture that allowed these deplorable events to occur.

In the next section we provide a résumé of the report and this is then followed by a reflective commentary by Paul Kelly – a highly experienced Independent Investigating Officer.

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The investigation concerned a complaint by a family (Mr & Mrs A and their 16 year old son X), for whom the ombudsman had already (a year earlier) upheld a complaint relating to a connected matter.  Problems persisted and a further complaint was made alleging (among other things): that the council had failed to assess X as a disabled child; had failed to assess Mrs A (as a parent carer); and had inappropriately influenced the role of the Independent Investigation Officer (IIO).

The complaint was made on 25 May 2017 and related to assessment failures that occurred in September 2016.  These dates are important, as the events in question post-date that coming into force of the Social Services and Well-being (Wales) Act 2014 (which occurred on the 6 April 2016).

The council had a policy, known as the ‘Derwen policy’, which stated – in effect – that children with ADHD, but who were not ‘disabled’ or did not have ‘significant developmental delay’ were ineligible for assessment / support as ‘disabled children’.  X had Autism and Pathological Demand Avoidance and although the Derwen policy did not specifically mention these conditions it is clear from the complaint, that the council also treated them in the same was as it treated ADHD.

The IIO investigated the complaints and in due course prepared a draft report which was overseen and approved by an Independent Person.  The draft report was shared with the council’s officers.  The officers were unhappy about the report – stating (among other things) that is was ‘very one sided’.  A meeting with the council was arranged and before this took place the investigator received a ‘flurry of documentation’ that she had not been shown during the investigation.  It was at this stage that the IP observed ‘Omg…will it never end’. The IIO was so troubled that she telephoned the Ombudsman’s Office for advice as to what to do at the meeting as (in her words) ‘it doesn’t seem right to me’.[3]

The IIO attended the meeting but had not anticipated being met by six senior council officers.  She felt ‘a bit overwhelmed’ and that she was being ‘bullied’. In this respect the ombudsman notes that there was an ‘imbalance in the number present at the meeting’ and that this was ‘sufficient to make her question, as she has, whether the independence of the process was being compromised’.   The council however stated that it was not seeking to influence the IIO into changing the report, ‘rather it wanted to make sure that “inaccuracies” were corrected’.  In this respect the ombudsman’s report concludes:

… the overall impression when viewed, objectively, is that the Council was unhappy with the findings. By acting as it did, it gives at least the impression that it was seeking to influence the outcome even though I have no hard evidence that this was its intention (bearing in mind it has denied such). However, that was how Mr & Mrs A saw it. Perception is often enough. On the evidence before me, bearing in mind the Council has not identified anything specific by way of ‘inaccuracies’, despite ample opportunity to do so, I find that it did act inappropriately.

 

The council refused to accept most of the recommendations in the final report (signed off by the IIO and the Independent Person) and in particular refused to undertake the recommended assessments of X and Mrs A.  In its opinion ‘X did not need care and support beyond that provided by his parents’ and that his needs did ‘not meet the criteria as a disabled child under the Equality Act 2000’.  Not only did the council get the year of the Act wrong – it also fundamentally misunderstood the law (not least – it seems – that the key Act was not the Children Act 1989 – as the material parts of this Act had been repealed by the Social Services and Well-being (Wales) Act 2014).  X had a Statement of SEN; the Council had accepted (in an earlier ombudsman complaint) that he required a specialist Autism assessment; and X was in receipt of the highest level of the disability related benefit (PIP).  The ombudsman also observed (as had the IIO) that X’s ‘child in need plan’ had not been reviewed for some time and so questioned how the council could confidently say he was ‘not disabled or had no unmet needs’.

This report is incredibly troubling on many levels – not least that a local authority had so clearly failed to understand its legal obligations.  What is (to an outside observer) of most concern, is the level and nature of challenge experienced by the IIO.  We are well aware of families being fearful of the consequences of complaining – fearful of retaliatory action by authorities[4] – but for a local authority to behave in the way described by the ombudsman towards independent investigators is shocking.  Complaints’ investigators are acting on behalf of Chief Executives / council members.  For a culture to develop where such an investigator considers that she is being bullied and for the ombudsman to agree that the impression given was of a council seeking to influence the outcome of an independent review – strikes at the very heart of the review process.  Ultimately senior legal officers and council members are responsible for the organisational culture of their authority – and these officers / members should take a long hard look at this report.

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We wanted to know if this sort of action by a local authority was unique – or whether complaints’ investigating officers encountered this on other occasions.  We therefore asked Paul Kelly – an expert Independent Investigating Officer of over 14 years to comment on whether, in his experience, overt pressure of this kind was sometimes placed on investigators – and for his general comments on the shortcomings of the social services complaints process as it currently operates.

General information about the social care complaints’ process in Wales is provided on the Rhydian pages – click here to access this note.

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Personal reflections of Paul Kelly – Experienced Independent Investigating Officer.

I was lucky: the first local authority to take me on as an independent investigator in 2004 was the best of the twenty or so I encountered (until finishing this role in 2018). After many years in the probation service, I knew about writing reports, but not much about the world of social care. That first authority gave me a good grounding, including encouragement to make strong statements in my Stage 2 reports. The complaints manager knew her job inside out and was confident in her level of independence from social care structures. There was joint training with the local government ombudsman and with social care managers.

Much turned on the qualities of that complaints manager and I relied on her for advice and guidance. Not only that, reports did not get past her unless the arguments and quality stacked up: she never sought to influence findings. As a matter of routine there was a meeting with the adjudicating officer (i.e. the senior manager responsible for the local authority’s response to the complaint) after reports were submitted. Some probing was to be expected. Overall, it was a good thing: it kept me on my mettle and I had a reasonable sense of what the local authority was going to do about my findings and recommendations.

Even within that system there were some awkward moments but nothing serious, except perhaps when the authority did not want to accept a report I had written in Easyread (or as close as I could get to it). My view was that the report needed to be accessible to the person with learning disabilities who had made the complaint: the authority’s view was that the report should have been conventional but with separate interpretation for the complainant. My mistake was not discussing that properly with the complaints manager beforehand.

What if there is no complaints manager or if there is somebody in the role without the strengths of the manager I have described above? In my experience, only a handful came anywhere near the standards set in that first local authority, which in any case began to dismantle as austerity-driven cuts began and the manager left.

I have illustrated the good, what about the bad? Have I ever experienced anything as bad as the case discussed above? Yes, up to a point but not very often. One local authority tried to put a stop to an investigation I was carrying out. Among various machinations, they consulted their legal department about grounds for removing me as independent investigator and attempted to include a senior manager in our interviews with service delivery staff. The independent person objected to that and together we produced our reports that, in the end, a disgruntled head of service had to accept and agree. The independent person was heavily involved and enormously helpful: I concentrated on the complaints while he watched over the process, reporting on the heavy-handed and inappropriate actions of the authority. I had been on the point of taking the matter to the chief executive (complaints arrangement are under that person’s responsibilities) but we got through without needing to do that.

Why could this have happened? The complaints manager had recently departed. She and her staff had previously encouraged investigators to be thorough and probe hard but fairly. They did not like to re-employ investigators who produced half-hearted or poorly argued work. They were actively pursuing early resolution work and had nurtured a group of high quality independent persons. The good work of previous complaints managers unraveled when a new hardline regime of disruptors took charge, so creating confusion, misunderstanding and not a little mayhem. The independent person and I were among the first to feel the chill. Did we get any further work from that authority? I think the answer to that question will be obvious.

I could describe two further examples of local authorities that behaved badly. Both involved directors bypassing adjudicating officers, getting too heavily involved but ultimately having to give ground. Both instances also included newly appointed complaints managers who were administrators rather than complaints professionals. The role of the complaints manager is crucial, without one – or without a good one – I think it is far more likely that things will go wrong. Complaint investigations are often serious and complex: local authorities need steady hands on the tiller.

Out of my more than 90 enquiries, three featured overt attempts at undue influence by local authorities. I checked with a colleague who has much more complaints experience than I: we agreed that in the main, local authorities respected the independence of investigators and did not seek to influence findings and recommendations.

Thee overt attempts were three too many. I am inclined to think that covert influencing is more prevalent. Well-run independently focused complaints sections provided me with plenty of work. Those repeat commissions dried up when regimes changed. Was that anything more than coincidence?

With experience of a very well-run complaints section, I was used to having all records readily available and staff interviews arranged for me. Legal advice was available and training provided. It was a shock to do work elsewhere where nothing very much was made available and investigators had to go hunting for records. Typically there was no training and no legal advice despite some tricky legal questions being involved in an investigation. Interviews with staff were variable: some were very cooperative and came fully prepared, others were unprepared and vague giving apparent compliance and little more. I made notes of all meetings and they went to interviewed staff in draft form, but all too often without reply. More than once key staff who had moved on to different authorities refused to be interviewed, even though they had been centrally involved with the matter complained about. And social care records? I am afraid, criticising them could be no more than shooting fish in a barrel.

I have worked on Stage 3 review panels: they are, in effect, an appeals process for complainants dissatisfied with Stage 2 outcomes. Poor quality independent investigator reports have been a recurring feature. Examples have included: local authorities’ versions being too readily accepted; descriptions of legal positions being wrong; key complaints information being omitted; absence of meaningful analysis; reports being padded out with unnecessary narrative (20,000 words on occasion) and the investigator and independent person declining to look at relevant supporting material offered by complainants.

Sad to say, I have witnessed poor practice by independent persons who did little more than be there and contribute virtually nothing. After a Stage 3 panel, an IP apologised to me, saying that she had been busy getting ready for a holiday and had not really checked the investigator’s report. After a lengthy interview with a couple (who were supporting complainants in a particularly difficult case) the IP sarcastically commented that had been two hours of life wasted. By way of contrast, unpaid volunteers in one local authority who had not worked in social care carried out some of the most truly outstanding independent person work.

Local authorities may have occasionally – but not routinely – sought to interfere overtly with findings and recommendations and perhaps more frequently, covertly show ‘controversial’ investigators the door but without telling them that was happening. More troubling was the amount of poor service received by people making complaints and authorities’ apparent willingness to accept, repeatedly, below par reporting and from the same investigators, possibly because their work tended to favour the authority.  An odd point of view held by some investigators was that of not challenging social workers’ as to the basis on which they had exercised professional discretion.

Of course, practical considerations come into play. One local authority told me they tended not to look for new investigators because it was quite difficult to get them on the books for payment. There was in the region a merry-go-round of the same people who would appear sometimes as investigators, sometimes as independent persons and sometimes as panel members. A Stage 2 investigator might find a buddy sitting on the Stage 3 panel with obvious dangers. I suspect (I have no proof) that over time a kind of group mentality developed that was not sufficiently child or client-centred. One possible indication of that was the absence of the children’s voice in reports where complaints had been made on their behalf by carers. Investigators may (or may not) have seen the children, but have not thought to include anything about their wishes and feelings in reports. On one occasion when acting as an IP, it was necessary to remind the experienced investigator to go back to the complainants, ask for permission to see the children, talk to them about their wishes and feelings and to include that in the Stage 2 report. I suspect, but have no evidence, that it would be even more likely for disabled children to be excluded.

People who complain tend to be relatively powerless: I am inclined to think that the system and standards of investigation and reporting would soon have to change if catering for middle-class complainants. Even though much of my complaints work was in urban mixed communities, I can only think of one complainant who was not white; all the complaints investigators and independent persons I encountered were white. I thought I detected dog-whistle racism in one case of an Eastern European complainant, but that person did not want the matter pursuing.

There is much more that could be written on the social care complaints system for children, including how its original intention of giving children a voice has been overtaken by adults. I have given a flavour of the way the system operates based on my observations – I have had no research evidence for reference and so have relied on what I have seen and what I think rather than what can be shown as generally the case. I think there are a number of serious flaws in an over-elaborate and under-regulated system that relies too much on process (i.e. going through the steps one by one) rather than outcomes (i.e. stopping to think how to resolve complaints quickly and well). An indication of process becoming tangled, is the length of time it can take to come to the end of the line. The initial Stage 2 deadline according to regulations is generally 25 working days, but in my experience – and in the case illustrated above – it can take years from the point a complaint is made to a final decision being reached. I have seen no complaints at Stage 2 dealt with within 25 working days. Something needs to be done.

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Photograph of ‘Tudraeth’ by Richard Jones -@lluniaurich
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[1] Coinciding with a significant increase in complaints due to the legal aid and cuts to local authority budgets.
[2] The investigation of a complaint against Gwynedd Council.   A report by the Public Services Ombudsman for Wales: Case No 201801474.
[3] A footnote in report then states “The Ombudsman has a written record of a telephone call received from the IIO wherein it was noted she was seeking legal advice. As that is not the Ombudsman’s function (and his investigation at that time related to different events), the IIO was told that the Ombudsman could not offer such advice. No detail was otherwise discussed.
[4] K Simons, I’m Not Complaining, but . . ., Joseph Rowntree Foundation, 1995 and see also House of Lords and House of Commons Joint Committee on Human Rights The Human Rights of Older People in Healthcare Volume I – Report and Formal Minutes Eighteenth Report of Session 2006-07 HL Paper 156-I (The Stationery Office 2007) para 235 which referred to the power imbalance that exists and the department of health’s acceptance that ‘fear of complaining was a problem’ of ‘people feeling able to complain without retribution’.

Arrangements to move a care home resident at short notice

An important ombudsman report has outlined key considerations to be taken when it becomes necessary to move a care home resident (in this case one with dementia).

The resident (aged 91) was funded by a local authority and her home had been chosen as it was near to her husband (aged 90) whose health made it inappropriate for him to travel long distances to visit her. Unbeknown to the husband the home had been in discussions with the Council for over two years about funding levels. In July 2017 it told him that his wife would need to move (as a registration change would prevent it from accommodating patients with EMI needs). What followed was a hasty search by the husband for a suitable care home for his wife – while the local authority acted with insufficient urgency. When the husband chose a care home above the local authority ‘going rate’ he was required to ‘top up the fees’ which the ombudsman thought to be inappropriate: that the ‘grounds on which the Council argued against the suitability of the [home chosen by the husband] (and the appropriacy of the alternatives) were purely financial and not based on any clear, up-to-date sense of precisely what [his wife’s] needs were’.

To access the full report, click here.

 

Photograph of ‘Maen y Gaseg’ by Richard Jones -@lluniaurich

 

Revisions to the Continuing NHS Healthcare (adults) Framework

The Welsh Government has published for consultation changes it proposes to make to the Continuing NHS Healthcare Framework (for adults) and its accompanying  Decision Support Tool.  The consultation document and drafts of the revised Framework and the Decision Support Tool can be accessed by clicking here.

The consultation document states that there ‘is no intention for policy changes made through this process to impact on the eligibility threshold for CHC, which is well-established and based on the consideration of a ‘primary health need’’.

The Welsh Government states that the proposed changes are designed to provide ‘greater clarity and presentational style’ – and that the proposals retain the core principles of the existing Framework which it states as being to:

put people first, involve and engage with them and their representatives throughout the process and ensure decisions affecting them are informed by evidence. There is a continued emphasis on care and support that is focused on need and that is co-ordinated and avoids any unnecessary upheaval to an individual’s way of life.

 

In relation to the Decision Support Tool, the consultation document states that the changes include an emphasis on the Tool not being used as a ‘scoring mechanism’.  It additionally states that the Tool is broadly unchanged, with a ‘few minor amendments’ (although on cursory inspection this is debatable – eg see the cognition change proposed) – the changes being:

  • Behaviour – add reference to self-harm as an example.
  • Mobility – revise notes. For example, replacing the reference to the 2001 National Service Framework for Older People with a more general emphasis on assessment.
  • Nutrition – revise wording and examples in the low, moderate, high and severe categories.
  • Psychological and Emotional Needs – clarify wording around the individual’s engagement in the care process.
  • Cognition – replace the previous highest level of identified need of ‘severe’ with ‘high’.
  • Drug Therapies or Medication – replace references to ‘non-concordance’ with ‘refusal or misuse of medication’.
  • Other Significant Care Needs – remove the levels of need in order to better reflect its purpose to capture areas for wider consideration.

The consultation closes on the 21 August 2019.

 

Photograph of ‘Lyn Padarn’ by Richard Jones -@lluniaurich

 

 

NHS Continuing Care (NHS CHC) for children and young people – Welsh Government Consultation

The Welsh Government has published a consultation paper on proposed revisions to the NHS CHC guidance for children and young people – which can be accessed by clicking here.[1]

This proposal comes three years after the Social Services and Well-being (Wales) Act 2014 came into force with explicit limitations on the extent to which social services could provide for the needs of disabled children – and aligned NHS CHC law for adults and young people. Over a year ago a paper in The Rhydian: on-line Journal of Social Welfare Law drew attention to the profound deficiencies in the Welsh Government’s 2012 NHS CHC for children and young people.[2] It pointed out that many Welsh local authorities were inappropriately funding substantial packages for profoundly disabled and ill young people: packages that should be funded by the NHS in Wales. The paper called on the Welsh Government to provide urgent updated and ‘clear’ guidance on this important question.

It is highly debatable whether the proposed revisions to the 2012 guidance address the criticisms made in The Rhydian: on-line Journal paper. It is highly debatable whether the Welsh Government is prepared to require LHBs to accept their legal responsibilities for children and young people whose health care needs are above the legal limits of what social care authorities are permitted fund.

Photograph of Teifi Pools Strata Florida.
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[1] Welsh Government Children and young people’s continuing care (2019) at https://gov.wales/children-and-young-peoples-continuing-care – consultation closes on the 9 August 2019.
[2] L Clements NHS Continuing Care (CHC) responsibilities for Children and Young People in Wales Rhydian: Wales Social Welfare Law on-line (2018) 12-18.

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Charging for social care changes

The Welsh Government has made uprating changes to the social care charging rules – which have now taken effect. The head-line changes are increases to:

  • the maximum non-residential care charge to £90 per week;
  • the residential care capital limit to £50,000; and
  • to the residential care personal expense allowance to £29.50 per week.
The Part 4 and 5 Code of Practice (Charging and Financial Assessment) has also been updated (to reflect the amended regulations). For further details click here.

 

Photograph of ‘Caenarfon Castle’ by Richard Jones -@lluniaurich
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Welsh Independent Living Grant (WILG): Policy Reversal

Julie Morgan, Deputy Health and Social Services Minister, has announced a major change to the process of winding down the WILG.  There will be (with immediate effect) a ‘pause of the transition’ to allow for revised arrangements that include:

An independent social work assessment will be offered to all former ILF recipients who are unhappy with their care and support package and would like a second opinion. This independent view will mirror the arrangements that existed under the ILF and so will restore a tripartite decision making system;

Welsh Government will provide additional funding to local authorities for the cost of independent social workers and additional care hours that may result from these independent assessments. This means that there can be no question of changes to a care and support package being a cost cutting measure;

The under pinning principle in undertaking that independent assessment is that the result should be consistent with people’s agreed wellbeing outcomes.  As there is no financial barrier, no-one need have less favourable care and support than they had under ILF.

In making her announcement the Deputy Health and Social Services Minister said that these new ‘arrangements acknowledge the historical entitlement of former ILF recipients’.

Credit must go to the Welsh Government (even at this late stage) for looking at the facts and doing the right thing.  Enormous credit must however go to Nathan Lee Davies for his extraordinary “Save WILG” campaign – enlisting the support of Welsh Labour conference, the BBC and many other key opinion formers.  The Minister also paid tribute to Nathan in her announcement.

To link to the Minister’s announcement (and Nathan’s comments) click here and to link to the BBC story of the announcement click here.

 Photograph of ‘Traeth Dinas Dinlle / Dinas Dinlle Beach’ by Richard Jones -@lluniaurich

 

 

 

 

 

 

Closure  of the Welsh Independent Living Grant

A case of Wales following in the footsteps of England?

While attention is focused on the countdown to leaving the European Union, one should not lose sight of the impending closure of the Welsh Independent Living Grant (WILG) which has been earmarked for the 31 March 2019.  The impact of the closure is already being felt by people who have transitioned from the WILG to Local Authority funded care and support.

A strenuous and valiant campaign to # SaveWILG has been led by Nathan Davies.

The sustained #SaveWILG campaign has gathered momentum in the final weeks before the proposed closure and has been given greater impetus by a letter from the Deputy Minister for Health and Social Services.  In this letter Julie Morgan, sets out the outcome of the Deep Dive Review that was put into place by the previous Minister to evaluate the process and outcomes of the re-assessment of WILG recipients who have been re-assessed for Local Authority Services. The letter notes that 157 disabled people (of the 1,174 people who have been re-assessed – i.e. 13%) have suffered a reduction in their care and support provision.

The Minister has since met with representatives of the #SaveWILG Campaign Group who have presented her with a dossier of evidence to reconsider her decision.

The BBC Wales Live news item https://www.bbc.co.uk/iplayer/episode/b0c0x936/bbc-wales-live-23012019(at 8 minutes 40 seconds) has highlighted the impact on disabled people who have been reassessed and the impact on carers. The long term costs of leaving disabled people with high level care needs with insufficient support was highlighted by Tanni Grey Thompson who supports the continuation of central government funding.

Nathan Davies on behalf of the #SaveWILG  has written an impassioned open  letter  to the First Minister for Wales https://nathanleedavies.wordpress.com/2019/01/28/open-letter-to-first-minister-mark-drakeford-savewilg/  in which he sets out the deep concerns of disabled people who have been moved to local authority care and support, reminding him that during the campaign for the office of First Minister, and in response to a question from the BBC he said,

… if an independent evaluation shows the new system is not working as well as the old one then I would be prepared to reverse it because this is money intended for a very specific number of people for a very specific purpose.

One must reluctantly come to the conclusion that the Welsh Government is following in the footsteps of England, albeit three years later.  The closure decision has given scant consideration to the evidence from England on the effect of closure on disabled people and their carers and Wales has been prepared to continue along a trajectory that risks destabilising the established care and support  of WILG recipients.  A critical analysis of the intended closure of the WILG can be found by clicking here.

The Deep Dive Review, referred to by the current Minister for Health and Social Services, was intended to be an independent audit of the process, impact and outcomes of assessing WILG recipients for transition to local authority services. Embedded in the review was the possibility of reversing the decision. If not it was merely a cosmetic exercise.

The detail of the Deep Dive Review has not been made public as yet. There is neither information as to whether local authorities provided each previous recipient of WILG with independent advocacy nor if they offered a carers assessment to relevant carers.

It is an indictment of a review which was supposed to give reassurance to disabled people about the veracity of the evaluation of the process of transition to local authority services, that disabled people were not consulted about their experience of the process  and their satisfaction with the outcomes.  Local Authorities representatives were however consulted and provided reassurance to the Minister that no major implementation issues had come to light.

The letter from the Minister to the #SaveWILG campaign notes that some of the previous recipients of WILG are no longer eligible for social care and have been moved to NHS Continuing Health Care.

Unlike in England, recipients of NHS Continuing Health Care are prevented by statute from having a Direct Payment to arrange care and support. This is a significant impediment to independent living and yet this has not been attended to in legislation (although in England this barrier has been removed).

It now rests with the Minister of Health and Social Services to reverse the decision to close the Welsh Independent Living Grant and to offer a clear view on how Wales will meet the needs of disabled people with complex needs.

The case note R (CWR) v Flintshire County Council(2018) is a salutary reminder of the experience of a disabled person in need of care and support in Wales under the Social Services and Wellbeing (Wales) Act 2014 and illustrates the understandable fears of disabled people when being assessed for care and support.

The case is also a clear reminder that it is possible to effectively challenge unfair, unlawful or irrational decisions by local authorities.

A Rhydian News item written by Ann James and photograph of ‘Cartre’r Chwarelwr Quarryman’s home’ by Richard Jones -@lluniaurich.

Can you cope?

It’s a simple question – yes or no?

If you are a parent of a disabled child – it is a question, when asked by a social worker, that you may dread.  If you say ‘yes’ you are at significant risk of having your support cut.  If you say ‘no’ your child is clearly at risk.  Instead of addressing this by providing extra support – it appears that some families are being threatened (explicitly or tangentially) with the ‘safeguarding’ process.

Writing over 20 years ago the late, great and delightful Ken Simons noted how many families were fearful of complaining or asking for more help because of implicit threats of this kind (in his research – the withdrawal of services if a request for additional help was made).  In his view it did not ‘take many incidents of this sort to undermine the confidence of families, particularly when they are coupled with what appears to be a worrying lack of commitment on the part of social services’.  He then cited an interviewee: “They will not commit themselves in any shape or form until there is a crisis”.[1]

In my work, I am coming across more and more families with disabled children who are experiencing implicit threats of this kind.  It appears, however, that for some their predicament is even worse.

BBC Radio Gloucester has aired two programmes[2] which recount how families who have asked their council for more help (and/or made a complaint about social services failings) have then been accused of fabricating the extent of their child’s illness / impairment (FII[3]).  The families, are being supported by the local Parent and Carer Alliance C.I.C.

The BBC has had expert advice to say that it would be expected that a county the size of Gloucestershire would have one case of FII every 2 years[4] – but the programme has heard from over 12 families who claim to have been accused of this (after requesting help / complaining).

A recent ‘post’ by the 2 tired and a toddler blog[5] included details of a survey it had undertaken (and which received 113 individual responses).  The blog accepts the methodological limitations of the survey but its findings are troubling.  Overall, 33% of those responding surveyed had been threatened with child protection proceedings and 30% were threatened with the removal of their children (ten councils are named in the survey).  The blog considers that a ‘significant point’ was that in 30% of the cases the local authority action followed a request by the family for help, and of these:

  • 25% were threatened with child protection proceedings;
  • 32% were threatened with removal of children;
  • 41% were directly accused of FII;
  • 66% were indirectly accused of FII (concerns raised for seeking 2nd opinion seeking diagnosis or knowing medical terminology for example).

The blog notes (a point echoed in the testimonies of families interviewed by BBC Radio Gloucester) that ‘only parents who have been accused of fabricated and induced illness can really say how far reaching and completely devastating these accusations are’.

Click here to access the survey details.

For a resource note concerning the misuse by local authorities of their ‘protection’ powers click here.

Image ‘Crossing the Irfon at Caer Beris, Builth Wells’.

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[1] Ken Simons I’m not complaining, but … (Joseph Rowntree Foundation 1995) p.34
[2] BBC Radio Gloucester 10th December 2018 Mark Cummins programme at https://www.bbc.co.uk/programmes/p06rr4t5 at 2:07:27 and 11th December 2018 at https://www.bbc.co.uk/sounds/play/p06rr56rat 2:20:17.
[3] Fabricated and induced illness.
[4] BBC Radio Gloucester 11th December 2018 Mark Cummins programme at https://www.bbc.co.uk/sounds/play/p06rr56r at 2:23:40.
[5] A blog that focuses on the needs of people with Ehlers Danlos Syndrome (a connective tissue disorder).