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Name: Further February Additions 9th February 2010E-mail: charles.henley1@ntlworld.comSent: 02/09/2010 09:54:18 pmWith apologies for missing the January contribution of:
LEARNING DISABILITIES: The Rise and Potential Demise of Structured Day Services for Adults with Learning Disabilities. 1955-2005. (ISBN 1899499199)
PREVIOUS CHAPTERS:
Foreword
Introduction
‘Valuing People: A New White Paper
A Dilemma for Parents and Carers
Fundamental Human Rights
Basic Normalisation Concepts
Legislation and Growth of Day Services during the Twentieth Century
Half a Century of Changing Roles
National Development Group Pamphlet No 5 – 1977
An Uphill Struggle
The House of Commons Select Committee on Community Care, with special
reference to the adult mentally ill and mentally handicapped. 1984.
The ‘Modernisers’ of the 1980s
Mencap Attitudes to the Changing Scene
Early Repercussions
Empty Days – Empty Lives. Mencap (1991)
King’s Fund Publication – Changing Days (1996)
Valuing People – a final opportunity
Responses to Valuing People
The next two chapters follow.
PLANNING FUTURE SERVICES - THE IDEALISM AND REALISM OF NORMAL LIFE
The outcome of the failure to identify and pursue achievable objectives over the past half a century has been to leave a policy vacuum. Current policy strategies bear a depressing comparison with a rudderless ship cast adrift in a gathering storm. There is a paramount need to go back to the drawing board and look critically and objectively at the very basic issues that have frustrated the formulation of a cohesive, comprehensive and sustainable national strategy.
To meet future demands for services there are never likely to be adequate or limitless resources. This brings an obvious need to look very critically at a considerable number of factors that have to be taken into account if the cycle of extravagant and unnecessary waste of resources for fruitless purposes is to be brought to a close. Not least, to consider amongst these factors is the question of the basic nature of the levels of ‘normality’ and ‘an ordinary life’ that we are attempting to offer- or impose on - people with learning disabilities.
The paramount aim must be one of providing an ordinary life option most appropriate to meet each individual’s needs. If we reflect again on Grunewald’s statement (1969) concerning ‘normality’ this surely provides a very simplistic but nevertheless realistic identification of the key elements of the ‘normalisation’ policy that need to be addressed: ‘...the term implies a striving in various ways to what is normal.... normalisation does not imply any denial of a retardate's handicap. It involves rather exploiting his other mental and physical capacities so that his handicap becomes less pronounced'.
Nevertheless, there are fundamental and indisputable factors that must be taken into account and it may well be that, when these are given the depth of consideration that they warrant, we must be realistic and acknowledge that whatever we do, or attempt to do, there are definite limitations. Conceivably, there are tens of thousands of people who will never lead anything comparable to what we consider to be a normal life unless they are provided with appropriate (structured or specialist) help to enable them to make the most of the limited resources that they have at their disposal.
Each individual’s perceptions of ‘normality’ are shaped very much by the limitations of their personal knowledge and experience. How then, when we aim to ‘normalise, can we define exactly what a normal life really is? To attempt to identify the typical ‘normal' or ‘ordinary' person is as difficult as identifying the typical ‘person with learning disabilities’ - there are too many physical variables, intellectual, emotional, and differing personality facets to make this possible.
In down to earth and practical terms, each ordinary person seeking a normal life sets his/her own criteria when selecting the activities, the environment and the company that will satisfy his or her needs within the acceptable boundaries and standards of community behaviour at the given point in time. They do this within the wider framework of their perceived social skills and class, intellect, physical ability, potential to develop, financial resources, and many other variables. There is a ‘continuum of lifestyle alternatives ' within which we can all find appropriate slots, but these depend on our particular range of assets and motivation and, essentially, of having or making appropriate opportunities upon which to capitalise. If we view this as a horizontal continuum of lifestyles, rather than as a vertical continuum that implies that the people at the top are ‘superior', then where you are on the scale does not necessarily make you a ‘superior' or ‘inferior' person, but one who is in more or less ‘fortunate' position on the scale. Human nature being what it is, however, most people try to move to a different point on the scale so that can feel they have ‘bettered themselves', and it is right that those who have the ability and the motivation should aim to keep changing their place on the scale until they reach the point beyond which they feel they cannot comfortably cope.
There are many constraints, but in different forms, on the ‘normal' members of the community who try to move across boundaries relating to their position in the social, occupational and professional hierarchies, or in aspiring to higher levels of recognition in the fields of recreational and competitive endeavour. ‘Normal' people, however, tend to recognise that they have their own shortcomings and limitations and attempt to rectify or compensate for them in other ways. They look for and take advantage of opportunities, but few linger for long in an environment that is hostile or runs counter to their personal needs or interests. Having privilege has distinct advantages: the right background; education; riches; friends in high places; and all too often luck may play a part, but for most ‘normal' people ‘to better' themselves more often than not depends on motivation, personality, ability, and progression by incremental (and achievable) stages. To what extent do these criteria apply to people who are disadvantaged additionally by learning disabilities?
People who have learning disabilities are no different, they too have boundaries to cross and, whether they are the most profoundly handicapped person or the most able, similar fundamental criteria should apply for all. Their most fundamental ‘right' is the right to have access to a whole range of varied and appropriate opportunities and be given a reasonable chance of success in their endeavours. They too, should have the ‘right' to move along a continuum, albeit that this is in small or large steps, that gives them satisfaction at each stage especially when this provides the motivation that leads to greater effort and fulfilment, increased self-esteem and less chance of demoralising setbacks through frequent failure.
When planning a comprehensive service to address the vast and widely ranging disabilities of all of the people concerned there is need to be ambitious and optimistic in setting out aims and objectives. Regardless of the degree and complexity of the disadvantages from which many of these people suffer they should not be discriminated against nor be deprived of access to a continuum of opportunities. They must simply be considered as people on a different point on the horizontal scale and have access to services that facilitate opportunities for movement regardless of the level of handicap. They should be given the chance to rise above levels of total dependency and demonstrate that they, too, can be contributors, whether in the big wide world or in an appropriate specialist setting. The vital question is how best can this be achieved?
THE ABSENCE OF A COMMON AGENDA FOR CHANGE
If those responsible for seeking an ideal policy strategy shared a common goal that put the interests of the service users and their families as their first priority how much simpler this task might be. The variety of vested interests that stand to benefit from changes that arise from the introduction of new policies, regrettably, does not prove helpful when seeking the best solution to meeting the needs of service users.
• Professionals want to build a reputation.
• Middle managers seek to enhance their career prospects.
• Ambitious practitioners want to be seen at the cutting edge of policy implementation.
• Administrators want to distance themselves from any administrative responsibility and financial encumbrance that has potential for increasing ongoing demands for finance and resources.
• Politicians tend to steer away from complex issues especially when these command very little popular support from the public at large and voters in particular.
• Many parents, not unreasonably, wanted to distance themselves from any label, service, or establishment that they consider would in any way ‘stigmatise' their sons and daughters, or set them apart from that which is considered ‘normal'.
• Organisations representing service users and families have many conflicting views to satisfy.
• Some organisations have their freedom of choice and expression potentially restricted by dependence upon government or other sources of financial input.
• Self-advocates seek services that will meet their own particular needs, often at the expense of others with much more complex problems.
Since 1971, when responsibility for day care services was passed to the Social Services Departments, establishment managers struggling to bring about positive change have been frustrated by too much, or too little, involvement from their senior line management.
• Too many senior officers dabbled in areas where they were out of their depth and, as a consequence, much needed resources were denied and ongoing developments were frustrated.
• Senior officers welcomed and gained career- related benefits from radical proposals and doctrinaires that enabled them to demonstrate their ‘progressiveness’ - irrespective of the long-term consequences for the service users.
• This predisposition towards responding towards ‘fashionable’ trends encouraged many at senior level in the policymaking hierarchy to fail to take account of the needs of all levels of handicap but, instead, to fixate only on specific aspects of the problems to be addressed.
• Few Social Services Department managers have had adequate knowledge of the problems and misapprehensions arising from the implementation of past policies;
• long-term commitment from external senior management has been rare, and continuity of external line management at all levels has been totally unpredictable. In a management climate of this nature individual agendas of those with vested interests have been encouraged to flourish.
• Myths have become accepted by middle-management staff as fact.
Bureaucrats, administrators, professionals and practitioners who have become beguiled by normalisation ideologies over the past decades have been making dubious and irresponsible decisions for many years. Many bear considerable responsibility for the perpetuation of myths and the continued failure to develop a national strategy. Senior administrators tend to delegate policy research and development tasks to middle-managers who are not sufficiently experienced or knowledgeable enough to fulfil the task. Few members of middle management staff are prepared to admit to being out of their depth.
At practitioner level, it is not unusual to find ambitious and career orientated workers prepared to seize upon any opportunity to change the system and blaze trails if this will enhance their future prospects - only to move on leaving the debris of their failed efforts behind them. Few of these are prepared to question dubious decisions made by line managers and administrators – relatively few are prepared to make themselves unpopular in defence of the interests of the client group.
Parents cannot all be absorbed of blame for the failure to develop a system offering a fair and even distribution of resources. Many have repeatedly failed to take into account the needs of others when seeking more ‘normal’ locations, labels or identities for their own offspring. Selfishness is a luxury in which parents and carers can ill afford to indulge – people with learning disabilities all too often pay the price of policies that succumb to the will of the most vocal pressure groups. Parents groups have a predominant responsibility and compelling duty to provide a united front in seeking to meet the needs of people with all levels of ability and complexity of problems and voice proposals that are based on fairness, commonsense, realism and achievability.
Then there is need to be objective and realistic when considering the emotive question of self-advocacy. Theoretically, the views expressed by the people with disabilities themselves should be the first to be taken into consideration when planning programmes for personal development - but not without due caution. Where individual needs are to be met and personal programmes are to be devised the views of the individual should be paramount. But the needs of the individual are not necessarily the needs of the many - discretion needs to be exercised lest the forceful views of a few are allowed to over-ride the interests of the silent majority. People who have learning disabilities have the same rights as others to express their opinions and demand appropriate responses, but they also have responsibilities – they must recognise their limitations and should not speak on behalf of others who have disabilities of a different level or nature unless they have the knowledge, experience and the authority to do so.
On a wider scale there is the question of the extent to which the intervention of influential sources- with a surfeit of good intentions, but limited knowledge and experience - can create a trail of havoc and confusion. With regard to the agenda for radical policy change, for instance, the timing of the King’s Fund Centre’s intervention into day care issues in 1984 could not have been more inopportune. It served however, to graphically illustrate the manner in which well meaning proposals can be distorted to influence questionable policy developments over an extended period. It also brings into focus the heavy burden of responsibility that rests on reputable organisations when they pontificate about radical philosophies that promote flawed policies. The price is to put at risk the welfare of very vulnerable people. One might well ask just how much of the credibility that was given to KFC Project Paper No.50 at the time (and is still perpetuated), was based on its actual content and how much was granted because the publication came from a normally well-respected and reliable source?
A similar question might well be asked of the IDC publication ‘Living like other people'? When a booklet is published under the auspices of a well-respected assemblage of organisations and authorities, a reader might reasonably conclude that the content must be impeccable as far as the best interests of people with learning disabilities are concerned.
When similar philosophies are reiterated over a decade later in yet another King's Fund publication ‘Changing Days' (1996), one might feel totally assured that the hypothesis upon which these philosophies are based must be unassailable truths. The reality is that however well intentioned these contributions to service development might have been, it is the outcomes that will determine the wisdom of advocating radical change without adequate research. It is always the people with learning disabilities and their carers who will always pay the price when flawed philosophical judgements are interpreted into flawed or unrealistic practices.
It is a sad reflection that during the process of policy development many people have, knowingly or unknowingly, contributed to the deprivation of others less fortunate. In their own search for professional advantage they may have denied vulnerable people a quality of life that they richly deserved but consequently failed to get. It is even sadder that others, through ignorance, indifference, or default, have enabled this injustice to be perpetuated.
History has shown that proposals that do not provide clearly defined, validated and researched guidelines provide an open invitation for incompetent and inexperienced policymakers to pursue their own agendas. This should throw forcefully into perspective the need for the objectives of the new White Paper to be addressed in a rational, objective and informed manner - it reinforces the need for an urgent reappraisal of past mistakes and reflection upon the outcome of the 1980s debate – it justifies the need for a full, comprehensive and objective debate in the light of current knowledge. There can be little doubt that there is a paramount need for a common agenda.
Name: FEBRUARY 2009E-mail: charles.henley1@ntlworld.comSent: 02/07/2010 09:13:51 amComment: 7th February 2009.
Having spent the whole of 2009 and earlier appealing to journalists, the media, politicians and prominent people with children with learning disablities for support in bringing residential and day care isues into debate in the public domain without success I appear to have exhausted the range of options.
I believe, however, that the carer's letter below is far too significant to be treated lightly so have forwarded a copy to Iain Duncan Smith who I believe to be one of the few MPs who genuinely has the interests of disadvantaged people at heart.
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Dear Rt Hon Iain Duncan Smith,
In your letter of the 11th February, 2009, you responded most helpfully to concerns I raised regarding the implementation of the Valuing People policies for people with learning disabilities.
You referred me to Mr Lansley who forwarded my views to Mr Harper.
Having had no further response I apologise for coming back to you but I believe that only your own realistic appreciation of the complex issues involved and genuine good intentions will offer hope of relief for victims of the implementation of this fundamentally flawed policy.
The December 2009 edition of the reputable RCN Learning Disability Practice journal published my opinion that the Care in the Community clock is being turned back half a century. Incomprehensibly, policy influencers and implementers still allow dubious dogmas (irresponsibly encouraged a quarter of a century ago), to underpin current 'modernisation' and 'inclusion' theories. The LDP editorial asked if my criticism of 'normalisation zealots' is unfair. The response, as yet, has been underwhelming.
Totally unrelated to the RCN publication I have recently received poignant but extremely significant emails from a carer who comprehensively reinforces my worst fears. I am sure, as per your letter in Feb,2009,1, these will also greatly concern you.
These outcomes have been predictable for many years. Since 2005 I have repeatedly had similar feedback but many of these people have been so intimidated that few have been prepared to express their heartfelt views openly. My personal view is that emotive debate that would embolden carers to express their view concerning the ongoing policy fiasco is not encouraged for partisan purposes.
Whilst I understand and applaud your support for personalised budgets, direct payments, and the role for the third sector, I fear that any success in this direction would be undermined by the apparent failure of the major charitable organisations identify and protect the interests of their most vulnerable members.
Since the major charities have lost their sense of direction the fundamental principles upon which current inclusion policies are based have remained largely unchallenged over the past quarter of a century. Based on a 'vision' lacking in clear strategic guidance, these corrupted principles threaten structured and specialist support crucial for families in need of stability and reliability.
That these policies are based on good intentions offers little consolation to carers traumatised by one-size-fits-all implementation that has no Plan B for their severely disadvantaged family members.
I hope that you can offer a ray of hope to these families that their needs will be given the urgent consideration by the Conservative Party that is vital to their wellbeing.
Yours sincerely
Charles Henley
Name: JANUARY UPDATEE-mail: charles.henley1@ntlworld.comSent: 01/22/2010 09:40:03 amJANUARY BULLETIN UPDATE.
22nd January 2010.I regret this update is long overdue and incomplete for reasons that I will later explain.
I felt, however, that I should not delay sharing with you an email I have received from a deeply concerned parent.
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Dear Mr. Henley
I am a subscriber to the excellent Rescare Newsletter and I noticed your website, and have subsequently read it and must agree whole heartedly with every word you have written.
I also read your blog some years ago on the Community Care website.
My husband and I are in our late sixties and we have a 37 year old son with learning disabilities and cerebral palsy. He lives at home with us. and we are his carers. We live in the London Borough of Bromley and their radical changes to the way they deliver services to people with LD. have been a disaster for my son and us.
When they introduced the new changes to the carers, it was totally rejected by most of them, especially the carers of people with the most complex needs, but the council persisted anyway, and closed down the most loved day centre (out the three that are in the borough) much to the distress of service users (my son included). My son suffered clinical depression as a result and I know of several others who have been similarly affected. I know that people with LD are prone to get mental illness, as a result of their life experiences, but surely the powers that be should be trying to rectify this rather than adding more stress to their lives?
I have written to Phil Hope and his predecessor asking if the government were aware that many service users were succumbing to mental illness because of the changes made by local authorities who quote the White Paper, Valuing People Now' when they cut the services. The reply was the usual drivel about how robust their policies are in getting people 'out in the community'
I have also written to Royal Mencap, but did not quite feel they were interested in helping me. Although I made a point of asking if they expected any casualties when they endorsed this unworkable White Paper. I also from time to time blog my frustration on the Community Care website.
My son now refuses to go any services provided by the council because he hates them so, and I can understand why because the alternatives are so second rate that they do not meet his needs anymore. The extra burdens placed on my and husband I are becoming intolerable and I feel near breaking point. The only light I can see is if the Government can be made to see that their policies regarding people with LD should not be a-one-size-fits-all.
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I have asked this lady’s permission to post this message and although she has kindly agreed without reservation I will respect her privacy for the present.
I would however also draw attention to yet another significant point she made when responding.
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Dear Mr. Henley
Thank you for replying to my E-mail, and yes you have my permission to use my letter. in any way you feel would help your campaign.
I am so grateful to know that there is someone like you fighting in our corner, as my husband and I feel that we have been abandoned by the very people who are being tasked with the job of making my son's life better.
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I can totally understand this parent’s frustrations and can only reiterate my own deeply held conviction that parents, carers, and your dependant adult children have not just been abandoned, but shamelessly betrayed by the those who have a moral obligation and duty of care to protect and fight for your best interests.
There is mounting evidence that constructive debate that could help influence positive change is being irresponsibly suppressed or discouraged without just cause.
Further amendments to follow.
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