ICS

The Human Right To Dignity

The following article dates from Friday, 15 April 2011 and is taken from The Broken Of Britain blog. This was a blog written by the late Dr Rhydian Fon James and his words are as relevant today as they were nine years ago.

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To read a biography about Rhydian, please click the following link. I would recommend reading all about this prolific inspirational who achieved so much before tragically passing in January 2016 at the age of just 31. Like me, Rhydian lived with Friedreich’s Ataxia. 

It is encouraging that the social care landscape has changed for the better in Wales since this article was published, as disabled people are now protected by the Social Services and Wellbeing (Wales) Act of 2014. In addition, the Welsh Government have made a commitment to the Codes of Practice to Article 19 of the UN Convention on the Rights of Disabled People.

I have now received my ‘independent reassessment’ from ICS and WCBC and am working behind the scenes to sort out an appropriate care package. I do not want to say too much at this stage as I need to concentrate and stay focused on the negotiations ahead.

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The Human Right To Dignity

This week was meant to be a quiet one, with Parliament in recess; no pressing issues on the news agenda; no MPs to brief. Meant to be. It hasn’t quite worked out this way, and we’ve all been busy preparing the continued campaign. This has meant that I haven’t had a chance to write about an interesting court case that’s been on my mind for the last couple of weeks.

Last week the Supreme Court heard an appeal case with huge implications for disabled people who receive packages of support. The court heard the appeal of Elaine McDonald, whose care package was cut by Kensington and Chelsea council even though it had assessed her as needing that support. McDonald became disabled following a stroke in 1999 and later broke a hip in a night-time fall. She had been provided with a weekly package of 22.5 hours of daytime support and another 10 hours of care seven nights a week.

A needs assessment by the council found night-time care was essential to provide supervision to prevent her falling while using the commode at night, due to a bladder condition. But in 2008 the council said it planned to cut her care package, and said she could be given incontinence pads instead of an overnight care worker, even though she is not incontinent. In November, the Court of Appeal ruled that the council had not breached care laws, McDonald’s human rights or the Disability Discrimination Act (DDA) by cutting her support.

The Supreme Court confirmed three weeks ago that it had granted her leave to appeal. McDonald’s case is being funded by the Equality and Human Rights Commission, which said in November that it feared other councils would use the judgment to “reduce community care and services for disabled people”. The Supreme Court’s decision will not be handed down for a few weeks yet, but it will be massively important for anyone who gets a care package from their local council.

This is because the Court of Appeal had found that a council could simply review a service-user’s care needs and then reduce their support, without needing to conduct a new assessment. The precedent set by this case would affect all service users. At the moment, if the council want to cut a person’s care package, they must show that their needs have changed and that they are thus entitled to fewer hours.

As service users will know, councils have been anxious to cut costs in recent years. This has led to a great deal of pressure to cut care packages, and the near-impossibility of new care packages being offered, but the need to re-assess has slowed the austerity zeal. This is because, regardless of whether they wish to cut, councils must show that the service user’s needs have lessened prior to cutting, and a council cannot be considered to have conducted a lawful assessment simply by reviewing a disabled person’s care package.

If the Supreme Court were to uphold the Court of Appeal’s decision, it would give councils free reign over decisions to cut care packages. It would also mean that it would be more difficult to argue that the refusal to provide care was a breach of her human rights to dignity and to a private and family life.

You might think that forcing a disabled person to, effectively, wet themselves at night when they are not incontinent is humiliating and degrading. But when councils are hunting for possible cuts, it may not be illegal for councils to cut care packages and force just that outcome.

WRITTEN STATEMENT BY THE WELSH GOVERNMENT #SaveWILG

TITLE: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments

DATE: 13 February 2020

BY: Julie Morgan AM, Deputy Minister for Health and Social Services

It is paramount that people’s ability to live independently is not compromised by changes to the way their care and support is arranged and provided. Last July, and following close working with the #SaveTheWILG campaign, I updated Members on the new arrangements I had introduced to provide independent care assessments for people who used to receive payments from the Welsh Independent Living Grant (WILG). These new arrangements were to aid any former WILG recipient who was unhappy with the outcome of their local authority care assessment. This statement is an update on those independent assessments.

Following my last update, ICS Assessment Services were appointed, through a competitive process, to organise and undertake the independent assessments for those who requested these, and 46 former recipients of payments from the WILG took up this opportunity. ICS has now undertaken all of these assessments.

All of the independent assessments completed have now been quality assured by ICS and passed to the respective local authority to consider. This was prior to a discussion between a social worker from ICS and a social worker from the respective local authority about the outcome of the independent assessment, and any effect its findings may have on the person’s current care package. Subsequent to this, a joint meeting is held with the person to discuss the outcome of that discussion, talk through the implications for their care package and agree the future care and support they will receive as a result.

In around half of the independent assessments completed, the discussion between the ICS and local authority social workers has now taken place, with the remaining discussions taking place over the next few weeks. Following these, meetings with care recipients have begun, with outcomes for those people being agreed and starting to be put in place. While it is too soon to comment on the overall outcomes from these independent assessments, some important issues are coming to light.

In a number of cases ICS has found that individuals are currently receiving larger care packages than expected, potentially because those individuals are at the transition point for NHS Continuing Healthcare (CHC). This interface between CHC and direct payments, and the challenges this can cause for care recipients, are issues that have also been highlighted to me at the National Social Care Partnership Board

Having reflected on this, I have instructed my officials to undertake a review of the direct payments and CHC interface. This is with a view to determining whether there are other mechanisms, for example independent users’ trusts, that could be used to ensure people that need more support from the NHS are not put in a position of losing the team of personal assistants they have funded through direct payments and built up over a number of years. If a better more equitable way can be found, this would remove the apparent fear that some people feel about the prospect of CHC.

It is a complex area and I will not compromise the principle of an NHS that is in the public sector rather than in the hands of private individuals, but I want us to see if there is a better way and to do that work quickly.

The United Nations Convention on the Rights of Persons with Disabilities, Article 19, is clear that States must ensure disabled people have access to a range of home / residential and other community support services, including the personal assistance necessary to support living independently and inclusively within their community. The key principle regarding this human right is the ability to choose how you are supported in your everyday personal care.

As the outcomes across the span of independent assessments are confirmed, I would remind Members that the cost of the independent care assessments, and any additional social care that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are fair and consistent with supporting people’s agreed wellbeing outcomes.

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Birthday Musings… #SaveWILG

Many thanks to everyone for all the birthday wishes – it means a lot and is much appreciated.

I can’t believe twelve months have passed so quickly. I am proud to have published Dancing on Thin Ice – a selection of Tanka and Haiku poems in the last year. It was a year that began with a visit from Julie Morgan AM, who works as the Deputy Minister for Health and Social Services in the Welsh Government. She attended my house to inform #SaveWILG campaigners that she had decided to give those who were unhappy with local authority assessments, the chance to have an independent assessment with extra funds provided by the Welsh Government to pay for any extra support needed.

This seemed like a victory for #SaveWILG campaigners. Indeed, the support given by the Welsh Government has been encouraging and comforting. They appointed ICS to undertake the independent assessments and the vast majority of these were completed by the end of October 2019.

However, WILG recipients are still stuck in limbo almost six months later. This is not due to any failing by the Welsh Government or ICS, but local authorities are still keeping us waiting, as they rubber-stamp the independent assessments.

I am really not knowing which way to turn at the moment. Life remains very insecure until I find out what the reassessment says about what support I can expect in the future. I am subsequently unable to decide where to put my energies. Do I write a new book, create some new poems or take a well deserved holiday before deciding on my next venture? I can’t make a decision on this until I know how much my independent assessment has been coloured by their meetings with WCBC.

I was told last week, that I could expect to hear back from Adult Social Care at the beginning of this week. At close of play today (Wednesday), I have still not heard anything. I believe a verdict is imminent, as I know a decision has already been made, but being kept in the dark about this is seriously damaging my physical and mental health.

The anxiety all this has caused me and other WILG recipients, is appalling. We should all be claiming compensation for the way we have had to wait, but I am sure we all agree that we just want it over and done with – as long as we end up with the support we need, to live on a level playing field with the rest of society.

Once again, many thanks for my birthday wishes and I hope that by this time next year, I am looking forward to the future with some degree of certainty.

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#SaveWILG Campaign Relaunched

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As many of my regular readers will know, I have spent the last 5 years campaigning to protect independent living for disabled with high support needs across Wales. In February 2019, we made a break through and the Welsh Government agreed to offer independent assessments to all recipients of the Welsh Independent Living Grant who did not agree with the decisions made by their Local Authority.

Since February, the Welsh Government have pulled out all the stops to make sure that WILG recipients have been assessed properly. They recruited the assessment company, ICS, to carry out the much needed reassessments and the majority of these were completed by the end of October 2019. WILG recipients were looking forward to resolving this issue before Xmas 2019, so that they could look forward to the future some degree of certainty.

However, WILG recipients are still stuck in limbo land and are unable to make plans for the long term future due to the fact that Local Authorities are dragging their feet and refusing to sign off the assessments made by ICS.

The fact that LAs are involved in this process is a contentious one as these are supposed to be independent assessments.The context is that these are being undertaken by ICS without its social worker having sight of any previous care assessments undertaken. This is as ICS did not want its social workers unduly influenced by what a local authority had undertaken or produced previously. Consequently, at the point ICS has concluded and quality assured its assessment on a person it does not know how the outcome of this compares to that which the person’s local authority has undertaken previously. In addition, a local authority may have some key information about a person or their care which may be relevant if ICS had known this.

This seems fair enough and WILG recipients have nothing to hide so would welcome LA involvement. If only it were that easy. I have had no reply to countless emails sent to WCBC this calendar year even though it is in the best interest of WCBC and myself to get this situation sorted once and for all. I must make it clear that I am very thankful to WCBC for agreeing to fund 24/7 support for myself while we await the outcome of the assessment. I appreciate this, but would still like to secure a long term plan that I know will see me through what is left of my life. Surely, a bit of security is not too much to ask while I continue to fight a progressive, genetic disease of the nervous system…

The stress and anxiety that all this indecision and uncertainty is causing, recently forced me to spend a period of time in hospital with a nasty chest infection. I am slowly getting back on my feet, but this whole episode has just renewed my determination to get this this whole sorry mess sorted out once and for all.

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BBC News: Disability Work Opportunities Under Threat

The BBC have written a shocking story about the potential closure of work opportunities for disabled people in the Wrexham area, due to further council cuts.

This is depressing news, but hardly surprising under a Conservative/Independent led council with a history of putting profit before people.

This cannot be allowed to happen, and I would offer support to anyone interested in campaigning to stop this measure.

I have included yesterday’s BBC report below.

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Two projects which provide work opportunities for about 75 people with a disability look set to be closed in the latest round of council cuts.

Wrexham Council plans could hit the Cunliffe enablement centre in Rhosddu and the Erlas garden project.

It closed other schemes last year as part of an ongoing disability services review aimed at saving £334,000.

Council bosses said they would find other ways to support those affected.

The review has already led to the closure of Le Cafe and Portable Appliance Testing in Rhosddu, along with the Coverall laundry in Rhosymedre.

Councillor Joan Lowe, cabinet member for health and adult social care, said the Cunliffe and Erlas projects “deliver good services that are well regarded by service users, their families and carers”.

“There are, however, a number of issues and challenges with the sites and facilities that mean they do not offer the best opportunities for community participation and can limit community inclusion.

“The proposal is for the council to reshape day and work opportunities services to deliver more flexible, person-centred services that are fit for purpose, offer quality, are sustainable and make more effective use of available resources.”

The changes to the service form part of cuts agreed by executive board members for 2019/20, which were met with anger by opposition councillors last year.

There are currently 39 people supported at the Cunliffe Enablement Centre and 36 at the Erlas Garden project.

The latest plans will be discussed by councillors at a scrutiny committee meeting on Wednesday, according to the Local Democracy Reporting Service.

 

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Pulling Myself Together

I have been a little out of sorts over the past week or so, thanks to a chest infection. Thankfully, I have come out the other side and am feeling stronger with every passing day.

It is always scary to be inflicted with a chest infection, as I am only too aware that such infections usually finish off my brothers and sisters who live with Ataxia. I didn’t want to join those unlucky few at this time. There is an election to win before I go anywhere…

The article I have put together below, just sums up some of my moods and feelings over the past few days, while the madness continues with my valued members of staff also being stricken down by illness.

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FACEBOOK STATUS 1:

I will probably have to stay offline for the next few days as I have just seen the doctor who said I have a chest infection. Bloody hell, this is all I need. I have to take this seriously as living with Ataxia is enough on it’s own without the added complications of a chest infection. I am now on antibiotics so hopefully they will do the trick as I do not fancy a stint in the Maelor. Thankfully, I have some excellent PA’s who will help me get over this and I will be back to full strength in no time.

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FACEBOOK STATUS 2:

I have just had another home visit by a GP who has put me on a stronger set of antibiotics. Hopefully, these will calm me down and stop me from having regular panic attacks. If I can get a good night sleep, I am sure that will help me loads.

I have also had a letter from ICS detailing the protest for them to make a decision. Basically, I think they were just playing for time. I am too exhausted to think of the ramifications of this. That is a battle for another day…

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FACEBOOK STATUS 3:

A third out of hours doctor visited me last night and provided me with the super strength antibiotics that I need to shift this infection off my chest. It seems to be doing the trick and I am regaining my appetite while breathing has become easier.

I am disappointed that I still do not have the strength needed to attend the Nick Whitehead Theatre this evening to vote for Helen Grout as Wrexham’s Labour Party candidate for the forthcoming General Election. I am totally pleased to openly back Helen as the only candidate capable of making a real difference to the community of Wrexham as a whole.

I am also pleased that my good friend, Julie Rogers-Owen, will be attending the Hustings and voting in the only sensible way. If the people of Wrexham, really want to see positive politics in action then it is crucial that Labour Party members vote for Helen Grout tonight.

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All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

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I have two piles of books in my living room. They need shifting if only to quieten the taunting voices in my head. You know it makes sense…

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Please read the following article: Dancing on Thin Ice: Available Now

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There is still much work to be done on the #SaveWILG campaign. It seems as if recipients from several Local Authority areas are still waiting on the results of their assessments. I want to emphasise that this is not because of any failing from ICS Services – the independent assessment company who have been put in charge of carrying out the reassessments – but because we are still waiting on the Local Authorities that let us down in the first place. This appears to be a totally ludicrous situation, as it was because we had no confidence in the Councils in the first place, that we launched the campaign. They are still making us wait by holding up discussions with ICS Services. I want to make sure that this situation is sorted out way before the upcoming festive period, as all WILG recipients deserve this after the torrid time they have been put through.

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Please watch the following video before deciding what to do at the Ballot Box on December 12th:

 

#SaveWILG Campaign Update

I have received an update from the Welsh Government, on their efforts to provide independent assessments to all WILG recipients who requested one. It read as follows:

All 14 local authorities who have former WILG recipients who have requested an independent assessment now have a data sharing agreement in place with ICS. As a result ICS now has basic data on the majority of the 50 recipients who have requested an independent assessment in order to progress these. This does not include details of previous care assessments or care plans as both ICS and us wanted their social workers to go into this process without any preconceptions of people’s care needs.

Consequently ICS is now arranging appointments for their social workers to undertake these and has already undertaken first appointments with a number of the 50 recipients across Wales. Following these ICS’ social workers will write up respective care assessments for submission to ICS’ quality control, before discussion with the relevant local authority representative and subsequently a joint discussion with the former WILG recipient concerned. On the basis of the current position ICS estimates it will have completed all assessments by the end of November. 

The reassessment that I received went very well, and was not hard work at all. I had feared that it would be much more invasive than it was. The social worker from ICS was both professional and friendly. She listened attentively to the case we made for 24/7 support, and said that she would be in touch with a decision in between three and five weeks. That was on October 1st.

It is good news to hear that ICS plan to have all the assessments complete by the end of November. This is something that I believe is very important, as the WILG recipients affected do not want another Xmas of worry and stress.

I have spent the last two Christmas periods busy on Twitter, while the rest of my family have enjoyed Xmas dinner. I could not detach myself from the fight to #SaveWILG, even during the festivities. My very way of life was on the line, and I was in no mood to join in with the celebrations while WILG recipients were struggling in such a way. Fingers crossed that this year I will be able to enjoy some Turkey, rather than the meagre meal of beans on toast that I have stubbornly eaten for the past two years in order to make a point.

If any WILG recipients, or their families/friends, still have concerns over the assessment process then please do get in touch.

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