Justice for People with Learning Disabilities

Reverse current direction of care in the community policies

Why is this important?

Recent Channel 4 ‘Under lock and Key’ documentary confirms that rational care in the community is being turned back.

Recent Channel 4 ‘Under lock and Key’ documentary confirms that rational care in the community is being turned back half a century
…………………………..
Restore justice for the disabled
The coming election is an opportunity for carers to pressurize their potential MPs for dramatic change to humanitarian policies – but not only carers, but the general population at large who do not realize the intense pressure that their neighbours are under.
In my line of work, learning disabilities, I have seen this worthy section of our society cheated out of the quality of service they need and deserve.
Carers, desperately need the support of the general public, for parental commitment is not just for the relatively short time that we fortunate ones experience with children who eventually fly from the nest to lead their own independent lives, but for a whole lifetime. This can be into their 70s and 80s, when, sadly, too often they live in hope that their children will die before they do.
These people all, to a greater or lesser degree, need the stability and continuity of specialist and structured input regardless of location; there should be no post code lottery.
Many years ago, for a very brief time they had the prospect of a fulfilling service influenced by caring humanitarian professionals and implemented by dedicated practitioners. But this was not to last as influence and implementation of policies was taken over by local authorities and self-proclaimed experts who pressurized a one-size-fits all model of extreme inclusion.
The contention of the extremists was that relationships between people with profound or severe disabilities were of an inferior nature and against their best interests. They were not ‘valued’ people and would never become ‘valued’ people unless they were involved in community activities with ‘normal’ people and could learn from their role models.
However well-intentioned, this ‘normalisation’ concept was out of touch with reality. The overwhelming majority of these people were already within communities where they were ‘highly valued’. Their special needs were being met whilst they were encouraged to broaden out into the wider world if they had the wish and capability to benefit from it.
In pursuing their own agendas, the extreme inclusion lobby broke up happy and contented residential and day care community groups, deprived them of lifelong friendships, and plunged their lives and those of their carers into lives of loneliness and uncertainty. No effective research had been carried out, the extreme inclusion policy was based on unrealistic wishful thinking.
At the top end of the scale, the more able people became deprived of opportunities of sheltered employment in local authority workshops and Remploy which closed because the extremists contended that working with other disabled people “stigmatised and segregated them from the community”! Nobody fought harder to keep these places open than the people with disabilities who worked in them!
But nothing has been learnt, for the original flawed one-size-fits-all dogma has been superseded by yet another one-size-fits-all proposal that does not stand up to close scrutiny – the bespoke personal budget care package.
This would be a reasonable option for many if it was affordable but it is public knowledge that financial support for adult social services is under extreme pressure and cuts are already being made extensively. If, in fairness, this option would be available to the 1.4 million people all in need of support of some description, the cost of meeting demand is unimaginable. The highest amount I have seen on record is a budget of £650,000 per year to meet one person’s individual expectations.
Current policies are not solving current problems; there is already a lack of appropriate community support services available to enable about 1500 people locked into NHS care to be freed into the community within the next two years.
Billions of pounds have been poured into a deep black hole over the recent decades because policies have been influenced and implemented by more than 120 town hall administrators – this has now been extended by a substantial number of Commissioners.
The impending election offers an outstanding opportunity put an end to this utter waste, and demonstrate that a new government will put humanitarian values above party political needs. All levels of disability are under pressure and need consideration. There are no easy answers, but for those with learning disabilities historical experience has shown that there have been better solutions.
50,000 people were liberated from institutions when policies were influenced and implemented by experienced and caring leaders and practitioners. This period of development has been airbrushed out of history – but it needs to come back. There are still people capable of bringing it back and leading a single service agency with its own Minister that could revitalise the outlook for people with learning disabilities at all levels.
The forthcoming election provides an opportunity to assess the calibre of those seeking election or re-election. If we cannot get a cross-party mandate right for the most profoundly disadvantaged and deserving people in our society, what hope is there for the rest?

 

Author: charlesahenley

Following a varied career starting with 4 years as a city office worker, 4 years service in the RAF both as ground staff ad flying duties, 16 years working for IBM Time systems division as a service engineer, a short spell as a production line supervisor, before returning as service manager to another US business machines corporation who had taken over IBM Time systems division in the UK. The nature of this work brought into contact with day centre establishments for people with learning disabilities and in 1966 when radical and progressive policies were awakening I changed career direction. In the years that followed I worked for five different authorities at centres ranging in size from 24 to 190 attendees of all levels of ability and saw remarkably progressive policies being introduced in the first 20 years for the benefit of the attendees and their carers. Sadly, as a consequence of local authorities gaining full control of policy implementation from 1990 onwards, service support went into a spiral of decline that has made debacle of the rational principles of care in the community. There is now a vital need to take responsibility for service implementation away from local authorities and the NHS and grant it to a single service agency under the direction of its own Minister. Without an urgent change of direction, the current dire situation can only worsen.

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