The following text was received from a long-standing Rescare member. As a parent and carer, she contributed to our anthology ‘Bound to Care’, first published in 1996, which collated the experiences of eight family carers. So 23 years later, we can update you with the further experiences on one particular family.
Note that we at Rescare have not edited the text received, other than to correct some spelling errors, to change the layout slightly to improve legibility, and to anonymise the text – so that the author’s daughter is now referred to as ‘P’. No part of the text may be reproduced without the author’s permission.
Fifty years of Downs Syndrome, a parent’s account.
“And yet there are others, apparently in health, but wanting in their wits, both men and women. God suffers such to go, and it seems to my judgement they are apostles, such people, or his privy disciples; for he sent them forth, silverless in a summer garment, barefoot and breadless, and they beg of none. Men of this manner we should have into our houses and help them when they come, for they are merry-mouthed men, minstrels of heaven.”
Were there always Down’s people as described in this account in The Ballad of Piers Plowman (c.1329)? Silverless in a summer garment could be an accurate description of my daughter (P) who has little understanding of money but knows its worth but none of suitable clothes for the weather. Were they perhaps clowns, as they never talked? The effect of an extra chromosome (trisomy 21) the official title, results in the instantly recognisable facial features and body movements despite other variations influenced by the other genes. There are occasional chimeras apparently with a mixture of normal 24 chromosomes and with the extra one but I have not met this. Of course, at first, you pray your child is atypical as you try to adjust to the most conceivable bad shock for any parent. Before antibiotics in 1970 when P was born, 80% of Downs’s babies died in their first year and a further large proportion before they were 5 or 6, with respiratory infections.
The big hurdle was getting your child assessed as being of Special Educational Needs but the Warnock Report 1978 encouraged mainstream education followed by the Special Education Needs Act of 1981 (since then Lady Warnock has said she no longer feels the same about this). Problems arose with teachers coping with SEN children in mainstream. P went to a “normal” nursery school and then to Special School which was a relief after many changes. The real problems can really start after school. Rescare, the Society for children and adults with learning disabilities and their families has been an invaluable help and support over many years. “Learning disabilities” took over from “mental handicap” but this is a misnomer, as, for instance, dyslexia can be helped enormously with qualified teaching, but mental impairment is quite different P can read quite well but I would not like to rely on her. A retired remedial teacher friend used to give her individual lessons after church for many years.
Having done a “Which?” on residential charities as soon as P was born, in view of my age, we decided on one with large country units with plenty of interests on site as we are a country family and with this end in view P went to the Mencap Rural Training Unit for two years. She was the happiest there that she has ever been with lots of friends and plenty to do. However, the all- consuming aim of Independence was now taking over with the result that in her final year she put on a stone in weight, came home covered in scabies, which took weeks to clear and, importantly, had been made to join some other students in stealing money: “They said they’d hit me if I did not obey them”. I was interested to learn later that the fathers of these boys were “enjoying Her Majesty‘s pleasure” and the staff were grateful that I had told them of it. A further nightmare was when she was allowed to travel to London with one other student and the train stopped at Basingstoke.
When she came home she moved to a home for several people with activities on site and this worked quite well until “Normalisation” took hold, and, in particular, attitudes to sex. The staff were pleased but P was not. “Should they put her on the Pill?” She had to tell the boy herself, which eventually she did. I later heard he had been moved for disruptive behaviour, to the relief of his mother. I am eternally grateful to the realistic gynaecological surgeon who had given her a hysterectomy before she was 16 because of painful periods. It was For her and not To her.
Special Olympics gave P a chance to represent the UK in Skiing in 1993. This gave an excellent demonstration of how important it is to treat these special people with care. On the last day after much disappointment on the slopes as she was good, I discovered that she had not worn any of the thermal underwear so carefully packed by me two weeks earlier. How hypothermia had not set in I shall never know. Staff had not checked clothes when getting her out of bed, exhausted after late nights. However, at the final dinner, she rose to her feet and made a vote of thanks to everyone!
Meanwhile, the push to “Normalisation” meant that a move to Harlow was mooted for P, with two boys one of whom bullied her constantly about her strong religious faith. This was clearly unacceptable and a move was eventually made to what was an excellent place with living and working on site but this was truncated with some moves to the nearby town and she was moved to a semi with one other some way out and had to walk a mile along a bypass to reach the activities. I shall never forget P ringing in a thunderstorm to say all the lights had gone out and they could not reach the switch.
In 2005 the Mental Capacity Act decreed that everyone could make their own decisions unless proved otherwise. However, the White Paper “Valuing People” emphasised the importance of families” and “residential units” and “village communities” and NHS hospitals. Nothing should be ruled out because of the wide range of abilities in Down’s. Meanwhile closure of all the old large units continued apace fuelled by the mantra that “Maximum Happiness” is achieved through “Maximum Independence”. Everyone had a “human right” to live as if they did not require 24 hour care. “Supported Living” also changed the way funding was provided. Residential homes had been provided by Local Authorities but with community living they are only responsible for the care element. Severe Disability Allowance, Rent Support, Mobility Allowance etc. come from government funds which clearly suits the LEAs. Since .2016 each “service user” has their own Personal Identity Package from the LEA combining the funds.
Meanwhile, tests for Down’s were becoming more reliable and could now show the likelihood from the mother’s blood, and the abortion problem raged again. Prof. Dawkins recommended abortion as it was immoral to produce a Down’s baby but to try again. A storm of protest arose describing the achievements of Down’s people who produced their own “Hamlet” and how much love they could provide but the sensible Minette Marrin of The Times (2008) pointed out that it was a difficult choice as all could be well in childhood with support but what about later? Whatever happened the strain on the public purse was going to be considerable: “A handicapped child is a handicapped family”.
An excellent TV series “Call the Midwife” set in the 1950’s showed how different attitudes were then when the elderly couple became responsible for a Down’s young man but found difficulty in coping but were thankful when he was found a residential place with work in a nursery garden. In a latter episode he featured with a non-judgmental approach to an illegal immigrant emphasising how Down’s people can have invaluable sensitivities not evident in “normal” people.
Recently, Rosa Monkton, who has considerable media influence, has tried unsuccessfully to stop the closure of care homes, but is now trying to ensure that her daughter in her early twenties can have a job although she does not merit the minimum wage. Down’s people need a safe environment where they can be appreciated for what they can do rather than tolerated for what they cannot.
The normal house on a normal street does not necessarily provide this. “Maximum Independence” does not always give “Maximum Happiness” although this seems to be the correct opinion at the moment.
For P it was clear by 2013 that a move west to be nearer the rest of her family was advisable and this took well over two years to achieve as leaping the county boundary is not for the faint hearted. Crucially, P had to make the choice herself as she is deemed capable of making up her mind in her own best interests, and it was clear that whoever was asking the question could easily influence the result. A feature of many Down’s people is that they like to tell you what they think you want to hear which can be a problem.
So, where does this “Normalisation” leave P today? She is on “supported living” with her own Personal Package of funds with 6 others, which is lucky as most of the old units have relocated to much smaller units with a manager in charge of several units but with a staff member on rotas 24/7. Two of the residents them have little jobs and there are outside activities. P has gym one morning, crafts another and pays for herself horse-riding on another, and has always paid for a taxi to church on Saturday evenings and indeed has a faith the envy of many. She cannot swim regularly as she cannot walk to the centre alone, or, very importantly, there is no chance to play snooker at which she is brilliant. What could be a lovely south facing garden remains untilled because although she did a horticultural training she does not CHOOSE to do anything now. In any case, she would need help, and financial constrictions mean there is scarcity of staff. So, the result is the sofa, and constant TV. She also has to be independent for meals, so she gets breakfast, makes a sandwich for lunch and in the evening has a delivered meal tailored to individual needs to put in the microwave which has to be supervised by staff.
All this has become more complicated since the onset of Diabetes No 1 at 46 years. Here the issue of Choice reaches ridiculous and vital importance when it is recommended that she wear a bracelet stating her complaint and the essential treatment in what is a life or death situation, but she does not want to wear it and the staff cannot insist that she does so.
Now the old large units are stigmatised, when they provided activity, companionship and fulfilment with much to do on site. Staff have also told me how much better it was with several of them available for discussion or even, a giggle. Now the responsibility is greater as they cannot leave the others alone but have to call an ambulance if one resident becomes ill. Voluntary help is great, but can be fragmentary.
How can the present system be cheaper with small units each with its own problems and expenses? Rather than large units pooling resources? As usual, with the best of intentions, the pendulum has swung too far to independence while these children will always be vulnerable and unable to cope unaided for themselves. Eventually the money will run out and sense may prevail.
It will be too late for P. I had a dream last night when I met her suddenly and she said “Mum, life doesn’t get better when you get older, does it?” and, sorrowfully I had to agree.