TOWARDS A BETTER DEAL FOR THE LEARNING DISABLED
THE HIDDEN POSITION
Two weeks ago we welcomed a new addition to our family. Thomas, my wife"s first grandchild arrived in the early hours of the day, safely delivered in Hospital after a somewhat difficult time for his mother in the labour process to say nothing of the fact that he was 14 days late. His parents had opted not to know the sex of the baby till birth, so my wife had double joy as she seriously wanted a boy . I say double joy for, along with every family the main joy is to find a perfect child delivered and in good health alongside a satisfied and healthy mother. In Thomas"s case this proved true, though two days later, after he and his Mum were released from Hospital, the fragility of the new born hit the whole family as the baby suffered from what was then diagnosed as low blood sugar levels and so for 48 hours we held our breath. Thankfully all was secured and he now is settling into a family routine and progressing satisfactorily and being well monitored along the way. To date therefore, our young parents can rejoice that they are blessed with a perfectly normal and healthy baby, as indeed are most parents. It is the word "most" there that focuses attention, for there are those who are not so fortunate in a variety of ways.
We take, almost for granted, that even with all modern knowledge, techniques and technology, that every day, children are born with congenital or other defects. Having a child arrive who is in total order does cause reflection on what could have been however, and for me this has been heightened by a TV documentary and newspaper articles resulting from that, on children with learning disabilities. This is extremely apposite for us as I began my working career as a Teacher in the 1960"s whilst Thomas"s father, is currently in his fifth year of teaching. The setting out of the problems faced by those parents with children with disabilities made us realise that in many ways, the true position ,even in this enlightened 21 st Century, is hidden away most of the times. We have advanced from the days when even Royalty committed such offspring to isolation whilst the mass condemned others to asylums, but we still have a long way to go to do the best we should for the afflicted and those who, quite rightly, love and cherish them through their faltering steps to adulthood and beyond.
It seems crystal clear that the provision made to assist the less fortunate in these areas is far from adequate. As a result, we find parents of such children effectively living in a personal world dominated by fear and anger whilst they struggle with all the love they have, to bring up their children. Thanks to the programme and a subsequent newspaper article by the TV Documentary leader and presenter, ROSA MONKTON, I have learned that under the terms of the Mental Capacity Act of 2005 here in the U K that we assume that "an adult with learning disabilities can make his or her own decisions unless it is proved otherwise" On first reading that seems very fair and sensible until the reality is focused upon by parents actually bringing up such children and who are fully conversant with their specific problems and can look ahead only with fear for what will happen to their offspring when they are no longer around to help support them and where necessary, fight their corner.
As with most Public sector matters in the UK the outside provision for care and assistance is ruled by the area one resides in. The term POST CODE LOTTERY, is indeed the one to sum up things graphically. An example, given by Rosa Monkton from one of the many parents who wrote to her, tells of the trepidation she felt as her learning disabled child faced a further assessment. I transpired that the assessment was carried out by a Social Services Manager, who had not met the child previously but determined that she be be placed in "planned risk taking" to help her learning and that they did not want " support provided to promote dependency". Now to me, without full knowledge of the facts, that seems to come straight from a text book without taking any regard of the actual individual, their parent carers or any specific knowledge of the person concerned. Social Services staffs have tough work schedules and constraints ans I have no intention of seeking to beat them all over the head, but some clearly fall short of expected standards. Monkton points out that under this edict, Agency support staff, who visit for just 5 hours in a week and apparently are under orders not to do anything unless asked by the "client", by which they mean an adult person with learning difficulties. Thus, no cleaning, no cooking, no shopping etc unless they are asked, regardless of the fact that their "client" may not have the capacity to do that. Just crazy !
Monkton provides more and very graphic examples of the basic stupidity on one hand, and the lack of clear understanding on the others, even dealing with aspects as varied as Dentistry and basic Financial Management, to demonstrate that without the close support of family, the whole house of cards comes tumbling down. Therein lies the rub, for she looks to the day when she and others like her will no longer be able to provide for the child now adult and sees society as being inept in providing a viable solution as things stand.
FOCUSSING ON BETTER WAYS.
There can be no doubt that the Monkton TV programme has "unleashed a huge articulate anger" In my opinion this is but the tip of a giant iceberg. It cannot be acceptable in 2012 for such unfortunates to be left as neglected. In the UK we contribute huge sums for our Government to distribute to assist in both cash and kind, those less fortunate in the Lottery of life. The human condition being what it is, there are those who blatantly defraud the system and regard their acts as victimless crime. By so doing, they ignore with gay abandon, the fact that funds so diverted take away from those who really need it and also from the recruitment, training and managing of those tasked with aiding the family carers and their ilk.
Towards better ways, an e- petition is to be launched to begin drawing Government attention to this situation by initially ring fencing funds allocated to people with learning disabilities and to review how funds are spent to ensure cradle to grave care. The aim is to get 100,000 signatures to have the matter debated in Parliament. When details are to hand I will post details in a further Hub.
The final, and mind boggling thought on the above is to ponder that if the UK is so poor at dealing with issues like this, what must be the position worldwide. To win the Lottery of Life, the first rule seems to be, be born whole in mind and body and most of all be born lucky. If that truly is the case then we have a very long way to go before we can be said to have really focussed on better ways.