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Name: Sincere ApologiesSent: 01/31/2012 11:01:04 amWould emailer from Ruislip please resubmit his earlier welcome and positive contribution.
Name: 2012 ReminderE-mail: charles.henley1@ntlworld.comSent: 01/27/2012 08:01:26 amThe disintegration of the support system for unpaid carers is gathering pace. Day centres are closing with no reliable services to replace them, funding is being cut and carers are being expected to pick up the slack when promised support services fail, often with no respite.
Social Services are aiming to pass over their responsibilities to second rate, cut price, poorly staffed, privately run services in line with the current government’s policy of the Big Society.
We must act BEFORE this happens to demand an OPEN NATIONAL DEBATE about the future of Social Care.
It is time for carers to unite and focus on central common issues:
• a single service agency
• the need for structured, comprehensive and appropriate support
• suitably trained and qualified staff to provide that support
If carers do not unite in these common goals the current policy debacle will continue on its path of destruction, presided over by Social Services Departments with scant resistance from the major charitable organisations.
If programmes such as Panorama’s exposure of Winterbourne View and Rosa Monckton’s ‘Tormented Lives’ and subsequent news coverage are not even stirring the majority of carers into fighting the system then how can we expect the general public to understand our problems and back us in our fight for equality.
Carers should not be just talking to each other about these major concerns, we should be challenging the downward trend in our services!
Will carers wake up in mass before it really is too late?
There is an e petition already in progress which needs YOUR signature NOW! You can view this e-petition at: http://epetitions.direct.gov.uk/petitions/22257
Please get your relatives, friends, and workmates to sign.
Name: Tribute to Professor Alan ClarkeE-mail: charles.henley1@ntlworld.comSent: 12/20/2011 06:12:45 amProfessor Alan Clarke 1922 - 10th December 2011.
A message sent to the FPLD on the 12th December has yet to be posted. I have requested an explanation.
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It is with deep sadness that I have heard from Ann Clarke that Alan Clarke had passed away peacefully and suddenly yesterday.
Ann and Alan Clarke may not be names familiar to carers and practitioners today but from the mid-20th century they have represented all that is good about intentions to provide fair and equitable quality services to people with learning disabilities and their families.
It was their principle pioneering work that inspired the transition of the closures of large residential institutions into achievable residential relocation into the community and the promotion of forward looking objectives for day care in the community for all levels of ability.
It was their work that inspired international world leaders like the USA's Professor Wolf Wolfensberger to acknowledge the UK as world leaders and encouraged him to attempt to go back to the States and educate his own countrymen to follow this example.
Tragically, it is their work that has been misunderstood and corrupted into the inclusion delusion that brought about the current policy debacle now devasting the basic principles that underpinned quality Care in the Community philosophies.
Unless and until the values of Ann and Alan Clarke are once again recognised and restored the downward spiral of decline in service provision and outlook will continue unabated - half a century of potential progress will have been entirely written off
Name: December Update 19th December 2011E-mail: charles.henley1@ntlworld.comSent: 12/19/2011 09:12:58 amThe posting below appeared on the FPLD forum 18th December 2011.
The FPLD forum closed for further postings on the 18th December 2011.
The submission for this posting was made to the forum on the 30th November 2011.
Am I being unseasonably cynical in concluding that th FPLD is not enthusiatic about pursuing this topic on a level playing field?
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Pauline and Sally Eva may I commend you both for the scenarios you have both described graphically illustrating the major deficiencies and consequences of the failings of current policy trends. I offer my apologies for a delayed response due to the need to first conclude an interesting exchange of views I have been having on this topic with Rob Greig.
You have effectively highlighted the outcomes that I predicted a quarter of a century ago when I warned the early promoters of one-size-fits-all ideologies, the King’s Fund Centre, that their radical theories could turn Care in the Community progression back half a century. Winterbourne View has been the confirmation of my worst fears.
Basically, the points I raised with Rob concerning his letter to the PM were that: amongst the list of distinguished signatories and organisations there are names that have undoubtedly considerably influenced the development of these failed overall service and system trends. These included the prime movers for radical change who could not fail to be aware of risks that promoting idealist but unproven ideologies entailed - and the predictability of a Winterbourne View outcome. I made the point that: today’s policy and problems have their roots in the zealous promotion in the early 1980s of the current one-size-fits -all get them all into paid employment delusion. For the past quarter of a century the wellbeing and wider life fulfilment needs of families with severely disadvantaged members and many others have since taken second place to the pursuit of inclusion ideologies based on visions, dreams, and yet more visions. .
Regrettably, Valuing People, the first policy document in 30 years, raised considerable hopes but failed abysmally to address basic issues vital to the peace of mind of families with severely handicapped members. The extent to which many special people need special and structured support was neither clearly acknowledged nor clarified. Urgently needed realistic day services modernisation processes defined within NDG Pamphlet 5 were neither restored nor was any other clear strategic advice and guidance made available.
Basically, Rob’s response was that he and the team had come up with the right answers but local authorities had no obligation to implement them. It is a fact that local authorities were virtually given a licence to pursue their own agendas and, by default or intent, nationally have been running these services down for economical, political, and ideological purposes. They are destroying the prospect of the future development of a quality service and hastening the return to the prospect of institutional life such as Winterbourne View becoming the last resort. According to the Panorama documentary there are already 580 inmates at other Castlebeck establishments alone.
But who gave LAs the licence to destroy Care in the Community when local Social Services Departments never were, and never will be, safe hands within which to entrust the wellbeing of such a complex range of needs? I suggest there is no need to look further than at the list of signatories to the letter to the PM and feel strongly that it is incumbent upon those signatories to stand up and be counted and admit they got it wrong. Until this happens nothing will change – if it does happen everything could change
A single service agency run by professionals who recognise and can take into account the vastly complex range of needs that exist from profound to highly able people and acknowledge that these are ‘special’ people needing special consideration is likely to provide to be an economical and effective equitable solution. Consistently this alternative has been rejected because of its anti-inclusion and subsequent segregation and isolation connotations. This is pure hypocrisy when the calamitous effect that inclusion has had on so many family lives so far is taken into account.
There are limited options; my main concerns are that in the not too distant future when the doors of most day centres are closed and the skills of dedicated staff have been dispersed, carers of severely disadvantaged adults will find themselves desperately out of their depth in a second rate profit led ‘caring’ market. Quality of service will be a post code lottery where more is spent running a disorganised and fractured system than in providing uplifting services. I fear that Winterbourne View is simply a depressing insight into the demand that will arise as reality bites.
In the meantime I have reminded Rob of serious doubts expressed on the forum that have questioned the validity of his policies and the substance upon which they are based; I have suggested that it would be helpful if he could respond to worried carers concerns directly on the forum.
Charles Henley
Name: December Update 11th December 2011Sent: 12/11/2011 02:12:33 pmDecember Circular http://epetitions.direct.gov.uk/petitions/22257
"Halt the ongoing decimation of realistic Care in the Community policies until widespread objective and informed debate has taken place.’
Advocacy and self advocacy is meaningless without availability of choice. Have you signed the above petition to convert your principles into practice on behalf of the voiceless thousands of families who are not on the internet but are suffering the consequences of flawed policy decisions and flawed policy implementation?
Carers involved can as well be those whose adult children have relatively mild or profound disabilities, they may concern residential or day care problems, they may seek realistic inclusion or structured support, they may seek achievable employment, they may seek respite care - but all have one common link – they have all encountered problems that can be traced to unreasonable or incompetent local authorities or bureaucratic sections of the NHS.
For the past quarter of a century the powers to influence and implement misguided policies has been in the wrong hands. It is predictable that in the not too distant future when the doors of most day centres are closed and the skills of dedicated staff have been dispersed, carers of severely disadvantaged adults will find themselves desperately out of depth in a second rate profit led ‘caring’ market. Quality of service will be a post code lottery where more will be spent running a disorganised and fractured system than in providing uplifting services. Winterbourne View basically provided a depressing insight into the demand that will inevitably arise as reality bites.
Time is running out fast and this petition may provide the last realistic opportunity for carers to unite in sufficient numbers to influence the government, the press, and public opinion to suspend the decimation of a treasured Care in the Community concept and restore sanity and reality to future national policies
I appeal to those of you who care not only to support this petition but enlist the support of their relatives and friends and put this appeal onto your own website outlets. Click on to the above website address or log on to e-petitions 22257 and scroll down to "Halt the ongoing decimation of realistic Care in the Community policies until widespread objective and informed debate has taken place.
Many thanks
Charles Henley
Name: OCTOBER UPDATEE-mail: charles.henley1@ntlworld.comSent: 10/18/2011 03:10:59 amOctober Update
During the recent months since the Winterbourne View exposure the lack of unity of purpose amongst those fighting to provide fulfilling lifestyles has concerned me deeply.
At a time when charitable organisations that should be coordinating a powerful drive to find solutions to current day care/residential support problems appear to have lost their way, this lack of unity of purpose can only gladden the hearts of local authorities intent on following their own agendas. Too frequently, these are agendas within which learning disability needs rarely rate very high.
The backlash against the continuing provision of building based services has been counterproductive; uncertainty and despair continues to arise with respect to both day and residential services, but it is within the day care field that evidence supports the view that current policy is fundamentally and possibly irretrievably flawed.
At the risk of being labelled a dinosaur I must go back in history for it is not ‘history’ but the point where time stood still; ongoing development ceased, and Care in the Community reverted from the process of bringing people out of incarceration in large institutions to the future prospect of abandoning Care in the Community for a dreaded escape route to an abundance of Winterbourne Views.
The problem today is a lack of a clear and coherent and cohesive equitable national policy and the disintegration of carer power that could influence positive change. Carer power is diminishing rapidly as day centre after day centre closes.
In every centre with which I had close personal and professional contacts across the South of England in the 1970s/80s the pattern was roughly the same. About 5% of carers were motivated to drive the progressive agenda; about 10% were actively supportive, but the rest would go along passively. Nevertheless, overall they could be energised into presenting a united and formidable front.
This was particularly important during the limited time when centre policies aimed towards realistic inclusion and offering CHOICE in the form continuum of opportunities internally and externally was being driven by progressive centre managers and staff. For a decade after the transfer of ressponsibilty for adult services to Social Service Departments in 1970 day centres had remained largely autonomous because the local bureacrats couldn’t handle the complexities that running a fairly large industrial/educational/recreational entailed. The combination of progressive managers and strongly led carers groups were a powerful combination seeking additional resouces that LAs strongly resented.
The parents who fought to create progressive day services and welcomed true modernisation were as fervent in advancing the value of community life for their family members as others are today – but many in their 60s/70s/ and even 80s had painfully experienced the downside of being lone voices in a largely selfish and disinterested society..
Despite LAs desperately seeking to dispose of day centres for the past quarter of a century without providing better alternatives they have succeeded only in undermining the former power that carers groups held. When most day centres have been eliminated there will be no determined bodies to whom carers can turn to seek support. Day Centre carers groups were the last bastion in defence of a rational care in the community and a realistic inclusion philosophy
My campaign has focussed on the need for recognition that people with severe and profound disabilities need special consideration. Many need structured and specialist support - not to exclude them from the community – but to enable them to maximize their opportunities to benefit from integration. Direct payments are not a viable and sustainable option for very many - but a bribe to facilitate centre closures It would be shear folly to ignore the current devaluation of the pound and the pressure that all parties will continue to adopt in rationalising benefits
Unity of purpose was never more crucially needed than at this present time.
Name: Parent and CarerCountry: BerkshireSent: 07/14/2011 05:07:26 amAs a parent and full time carer 24/7 with no community services/help what so ever and pensioner on £36 pw with no financial assistance (no carers allowance once pension age) and no financial support for being a carer from central government or from local authority.
No recognition of the extra costs for fuel this takes being they live at home 24/7, not saying I don't care or love them to bits but this will not pay bills.
Also no recognition of levels of support needs my two sons with learning disability on autistic spectrum have and local authorities use freedom of choice for them when my son's advocate for themselves of not requesting for an assessment, for which they are scared of after years of abuse of not recognizing their true needs from the community General Practitioners and being pushed around in the educational system because local authority protecting themselves.
My son's have had and continue to have hate crime, same as my self for association with
my family and to add to this now my husband who has uncontrollable diabetes and Parkinson's, email you here to say thank you for being there and trying to help the learning disabled community for we have no one to really stand up for us and you are very correct in your knowledge of our situation we do get intimidated when we take our stand and as a parent and wife I am prepared to still do this and will continue to the day I die.
I would like to say more but have to go as my husband has been in the Royal Berkshire Hospital and again not received good care as they forgot to give him his insulin on two occasions and I have spent more of my much needed time sorting this out for him and balancing care for my sons and sick cat. Once again I sincerely thank you.
Name: Late June UpdateE-mail: charles.henley1@ntlworld.comSent: 06/28/2011 05:06:44 pmThe overshadowing of Learning Disability Week 2011 by 86 luminaries raising concerns with the Prime Minister relating to appalling conditions in an enclosed institution half a century after the introduction of Care in the Community policy can only be regarded as an alarming indictment of a national failure to learn from 50 years of experience.
“We, the undersigned 86 people and organisations, have worked for many years to help people with learning disabilities live their lives as full and equal citizens in our society. We were disturbed and distressed to see the evidence of abuse and service failure that was shown on the recent Panorama programme believe that it is almost unavoidable consequence of the continuing use of inappropriate services to support some people with learning disabilities"
Following the massive injection of human, material, and financial into previous attempts to enable people with learning disabilities to ‘live their lives as full and equal citizens in our society’, what lessons have really been learnt?
Has focussing myopically on ‘inclusion’ and ‘independence’ associated with ‘full and equal citizenship’ dominated an agenda averse to ‘specialist and structured services’? Have the attendant emotive overtones of ‘segregation’ and ‘stigmatisation’ led to the creation of a fragmented delivery service besotted with one-size fits-all solutions? To delegate responsibility for the wellbeing of adults with severe and complex learning disabilities to local authority discretion without clear strategic guidance was a recipe for the lamentable services deficiencies that continue to be exposed.
The needs of severely disadvantaged adults will only be taken seriously when overseen by an independent single service agency, an independent specialist inspectorate, and ring-fenced financing. Only when these basics are met will the ‘Big Society’ be enabled to make a worthwhile contribution.
In the meantime, the fundamental flaws in the hypotheses upon which current policies are based demand close scrutiny. Whilst events occurring in institutions are sensational - the lack of a sound, comprehensive, equitable and sustainable national policy to meet residential and day care needs continues to inflict trauma and despair on countless carers faced with the decimation of valued residential and day care resources.
A coherent and cohesive policy is non-existent; rational and achievable objectives identified and addressed over the past decades have been supplanted by visions - and yet more visions –compounded by the lack of clear strategic guidance. How can this be so when many of these outraged signatories have been in positions of influence to recognise and remedy “the continuing use of inappropriate services to support some people with learning disabilities?
The contents of the letter to the Prime Minister are meaningless whilst the inherent failings and fundamental flaws of current policy direction remain unexplored and unchallenged by the 86 signatories.
Current policy deficiencies must be identified, debated, and remedied.
Name: Update June 7thE-mail: charles.henley@ntlworld.comSent: 06/07/2011 02:06:30 amI agree with you totally, Mike, the zealots who failed to recognise the dangers of the artificial normalisatio/inclusion policies they advocated in the 1980s have much to answer for.
With their misplaced confidence that 'the community ' could meet all needs without structured and specialist service support, they gave the authorities licence to dispose of specialist welfare officers (MWO), Community Mental Handicap Teams, and quality staff training courses. If those resources had still been available today the Winterbourne View admissions would have been avoided
My own conclusion is that these situations will continue to arise whilst power remains in local hands. .
A coherent and cohesive policy sustainable on
an equitable national basis is needed to replace the current policy fiasco which is pouring billions down the drain, fragmenting support for change, and benefitting opportunists and the private sector.
An impossible dream, maybe, but I believe the answer lies in an independent single service agency with its own inspectorate and ring-fenced financial resources.
Name: Mike AdamsE-mail: mike.adams@devon.gov.ukCity: ExeterCountry: EnglandSent: 06/06/2011 02:06:21 pmDear Charles
I think it was Prof Wolfensberger who said that the definition an institution was one where where services were delivered by a single authortity. This may be true and was one reason among many others for the eventual closure of old hospitls. Although various departments in the hospitals were run by staff who were independent of the rest of the hospital structure it could be argued that as such provided extra eyes to see what was going on. ( I'm not advocation a return to this sort of care). When the institutions closed we were able to secure day placements with the local authorities and thus not only gave an alternative to the resididential care aspect of support but also fillied the day and gave an extra safeguard to the care system. We also made regual unannounced calls to the hoomes and day care places.
What has developed is institutionalisation in another form. We now see care homes where the residents do not go to any independent day resources, and parents who provide the bulk of the support with the additional responsiblility of caring because either no day care provision is available or ots dimishing or under threat. In my view the most recent scandal in Bristol may have not happened or may have come to light earlier if there people had gone to somewhere separate during the day. Sadly finance plays a big part in the current situation. Day support costs money which ought to be included in the fees, (£3,000 per week is an awful lot of money) but it is not. LA's are unnwilling to pay extra for day care even where it exists and as a consequence people are dependant on the staffing available to even get out into the locality.
I despair when I think of all the enquiries there have been into the care services over the years; Ely, Farleigh, Ockendon, Longcare etc etc and still the lessons have not been learnt, or is it that the people who have memories of this have long since left the service to be replaced by the dewy eyed who of course have no memory and think that it could not happen again.
The whole thing needs a radical rethink and I have to say if not more money then a redirection of the vast sums which are paid often into the pockets of large companies who see their incomes guaranteed for many years to come.
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