Rosa Monckton: Caregivers driven to the breaking point
November 10th, 2009
Rosa Monckton, whose 14-year-old daughter has Down syndrome, writes in the [UK] Daily Mail that the parents of children with disabilities face a shameful lack of support that is “driving some to breaking point — and even murder.”
Monckton’s new documentary, “When Mother’s Love Is Not Enough,” documents the pressures faced by parents who have children with disabilities, and examines the maze of bureaucracy often prevents families getting the help they need. It will be aired tonight on BBC1
An excerpt:
Our standards of care are dismal, our understanding of what these families need is non-existent and the endless bureaucratic process required to access vital services is mind-boggling.
… That’s got to stop. There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing.
… Faced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympathize with those parents who do reach breaking point, and even with the tiny number who end up taking their child’s life. They are not evil; they just didn’t get the help they needed.
But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future – almost any future – for their disabled child. And they do so because they love them as only a parent can.
(Rosa Monckton and daughter Domenica, BBC photo)
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November 17th, 2009 at 12:27 pm
Rhona, sorry my post irritated you.
My criticisms of the program centered mainly on Rosa Monckton’s (for me, as the mother of a person with Down Syndrome) unacceptably negative view of Down Syndrome – and unwarranted, given how lovely her daughter is.
The program Rosa Monckton presented — in my view — lobbied for institutionalization as a good alternative (hardly a “groundbreaking” solution) and she came too close (also in my view) to being an apologist for mothers who had murdered their children (the one with the adult son with Down Syndrome and the other who drowned her 4 year old with cerebral palsy).
I don’t suppose you are aware (as you refer to my daughter as my “Downs child”) of the politics involving Down Syndrome, nor the fact that people with Down Syndrome are now considered by an enormous and vocal element in the medical community (particularly in the UK) to be unworthy of life. Rosa Monckton’s views on Down Syndrome, in my opinion, as presented in this program, certainly do not reflect our own views and are unhelpful in the fight advocates of people with Down Syndrome must lead to ensure their human rights.
I am sorry that you appear to believe I was dismissive of the concerns of people with disabilities more debilitating than Down Syndrome. I certainly am not. We are very lucky because our daughter’s disability does not negative affect her life — or ours. We are extremely grateful.
But don’t be dismissive of her accomplishments either. She is not a “Downs child”. She is a person who happens to have Down Syndrome. Trisomy 21 is only one element of who she is — and certainly the last one she would mention if asked to define herself. So please don’t define her by her disability.
Thank you.
November 16th, 2009 at 7:32 pm
Dear Elizabeth,
Thank you for your comment. It was insightful and thought-provoking. I hope you know that hearing your story makes a difference in this debate. Also, I hope you keep telling it – especially to those who make laws and appropriate funds.
You deserve better help. Please keep voicing your story and your concerns.
November 16th, 2009 at 1:22 pm
Well done to Rosa Monckton for taking on a very hard subject that no-one really wants to hear about. I find myself very irritated with Mandy, who is very fortunate to have a daughter without the many problems that often make integration into a mainstream school, whether private or state-funded, either impossible or educationally meaningless. I am happy for Mandy that her Downs child is so well and well-adjusted – but this is not the case for a great many children with disabilities, and Mandy’s dismissive response to a brave and hopefully groundbreaking programme is really pretty unhelpful.
My daughter, who died two years ago at the age of nine, had profound and multiple disabilities. Like Mandy, we aspired to find appropriate help to improve her capabilities, but there are no private schools for such children, and our local authority would not pay for her to attend a local charitable institution where her progress would almost certainly have been better than in the state school she eventually attended.
Those of us with disabled children have enough issues with the rest of society, without having to endure the criticism of those in similar situations who have been more fortunate. Just because one child has benefited does not mean that the current situation is acceptable and not requiring legitimate criticism.
November 15th, 2009 at 9:08 am
Rosa Monckton’s TV documentary on disability in families this week was an eye opener and long overdue. At last the hidden truth has been exposed. Like other viewers I, too, was extremely shocked and upset to discover that in 2009, parents with profoundly disabled children are just left to struggle alone at home with no support. It was hard to believe the story of the young mother, who was at breaking point and suicidal, because she hadn’t even had a diagnosis for her extremely sick/disabled baby who screamed and cried day and night. What was her GP doing I asked myself? Surely, GPs and the NHS have a legal duty of care to all families of severely disabled children to assist them in getting a diagnosis and practical support.
I was born prematurely in 1940 and my poor mother had to bring me up, and my older sister, with the same disability. My mother and I nearly died during my traumatic birth. The level of my disability was worse than that of my sister – it didn’t affect her normal development/milestones – she went to grammar school, higher education and marriage/family – but for me that didn’t happen. Unlike her, I needed major orthopaedic surgery as a 20 year old, suffered an eating disorder (undiagnosed) and a prescribed drug addiction as an adolescent. I was very afraid that if I married and had children they would have been taken away from me if I couldn’t cope and so I made sure that would never happen. I worked and eventually recovered myself, owning my own home in 1978, and went to university in 1989 as a mature student.
I didn’t understand, while I was growing up, that all severely disabled children were in institutions and, therefore, at mainstream school I was the only physically disabled child, which neither I, nor the staff, could deal with. Our mother struggled to find out what the disability was without success which caused her great distress and her anxiety was unintentionally transmitted onto me. While I was at university in 1993 I had a brain scan, when cerebral palsy was finally diagnosed, even though brain scanners were invented in the 1970s. I had to tell her at 83 years old although I think she had some idea. I read my medical records in the late 1980s and discovered I had been given a Greek label ‘arthrogryposis multiplex congenita’ in 1960 (unknown to me) but it’s an archaic medical term to describe the medical condition, not a diagnosis. I believe my mother suffered from untreated post-natal depression for many years but she worked to overcome it. My parents marriage fell apart in the 1960s caused by all the stress, isolation and no support. My father was jealous of me because he felt my mother neglected him because of me which was a terrible emotional burden of blame he put on me. Emily, my mother, told me when nearing the end of her life that if we had both been mentally impaired, or in wheelchairs, we would have been put in an institution as she couldn’t have coped. But she did the very best she could for us under very difficult circumstances and was an extremely hard working person. I’m eternally grateful to her for the lifelong support she gave me and that she would never have abandoned me, like my father did, as I could have ended up in in the gutter.
Those children featured in the documentary would previously have been put in special care homes from birth but since the inception of the National Health Service in 1948, social services in the 1960s and the closing of many care homes in the 1970s, most parents now are forced to care for their disabled children alone at home without the type and level of support they would have received in a care home. A truly scandalous state of affairs. I’m sure David Cameron wouldn’t have received the help he received from the NHS for his profoundly disabled son if he wasn’t who he is.
Interestingly, today as an older disabled person, I am still left to cope entirely alone with no support from anywhere. Social services tell me I have to pay for my own care, even though I almost died last year from a life-threatening adverse drug reaction caused by Lipitor/statin-induced toxic/chemical poisoning – an NHS prescribe drug – on top of the cerebral palsy. I have been left with severe irreversible serious side-effects, so why should I pay to be cared for at home? I am not responsible for my own medical conditions. The NHS and social services must be made liable for these care costs. They are covering up and denying this medical disaster.
Thank you Rosa for highlighting and sharing the plight of your own family, and of all those other desperate families, who have to cope with such intolerable stress and isolation through no fault of their own. Not much has changed since I was growing up it seems. I admire Rosa Monckton, who is not a snob, and doesn’t cover up her daughter’s disability. She doesn’t hide it like my sister, who also has a title these days, which has made her into an even worse snob with an even greater need to cover-up the social stigma. On marriage she cut herself off from her birth family and became non-disabled by association – her husband and three children are all non-disabled – pretending I don’t exist. So, it’s not only non-disabled people who are prejudiced and discriminate against disabled people…
Yes, for my parents, who were a very glamorous young couple in the 1930s, giving birth to two disabled children was a terrible calamity. Near the end of her life I told my Mum I couldn’t have coped with what she had to face – her husband away for six years in WW2 and in denial of the disabilities, her evacuation during that time with two young disabled children and no NHS or diagnosis, my father’s unrecognised combat stress/anger after he returned from the war and his resentment of her independence through going out to work which she did, not only for an extra income, but to keep her sanity. The culmination of all these intolerable stresses led to an acrimonious divorce in the 1960s – a shameful and very rare event in those days. I will never understand why some families have to suffer such difficulties and pain. My parents couldn’t talk to each other or with us about the problems. No wonder some parents have been driven to killing themselves and/or their disabled children.
After reading Charles Darwin’s The Origin of Species, the theory of natural selection, in my twenties, it lifted the terrible burden that mediaeval religious thinking had put on me up until that time to justify the disability – that my ‘sinful’ life had caused it! I would rather have been in control, with unrestricted choices in life, with a happy family of my own, like other people enjoy. But my disability/ill health has forced me to live separately in society as a spectator to other people’s lives. How different and happy life would have been for all of us if we had been supported as a family and I had been rehabilitated as a young person after the surgery. But it would have been even better if we had not had the burden of a disability at all – let’s be honest…
November 11th, 2009 at 6:43 pm
This sounds like quite an amazing documentary…available in the US in any way?
November 11th, 2009 at 4:41 pm
excellent programme – however it is you and YOUR peers that are in the position to change the apalling situation for these families. Placed there by us to govern and care.
Maybe the facless person who dictates that 4 nappies a day is enough should care for these children for a fortnight to help them understand.
What a sad and selfish world we live in.
November 11th, 2009 at 4:38 pm
I’m sorry to be the dissenting voice on here.
I found the documentary disturbing. Of course, a lack of social support is distressing in and of itself. I know: we never had any! We managed fine, though.
But the assumption that institutionalization is the best solution – I totally reject. As I reject the belief that a disabled child is necessarily a burden.
Our daughter has Down Syndrome. She does not have health problems, mental or physical. She is a very lucky young woman and so are we. She is not – and never has been – a burden. And my husband and I are not inveterate “goodie two-shoes”. We are about as cynical as it is possible to get. But not about her. How could we be? She is our child, the essence of who we are.
My husband and I work full-time. We are comfortable financially, but hardly wealthy like the Lawsons. For the first 12 years of our daughter’s life, I worked 75% to leave work early enough to pick her up at school (a mainstream private school we had found without anyone’s help and which we financed with difficulty) to take her to speech therapy, to educational support, to physiotherapy, to music therapy, etc., etc., etc. (all of which we had to pay ourselves – in the country in which we live, either you institutionalize your children or you have no support at all: play with their ball or you don’t play). You can’t even deduct expenses from your income tax! We never had anything resembling social support from social services in our country.
Was it exhausting, were we ever near breaking point? Possibly. I don’t recall. Rather like giving birth, the pain fades far into the recesses of memory when a parent beholds the miracle of having a child.
Our daughter was born not once, but twice. Through a program of intensive stimulation, she gained access to our world without denying her own. She became who she was meant to be.
I’m afraid I don’t agree with Rosa Monckton’s views on Down Syndrome. Her daughter is lovely and charming. If she is not quite the ideal Mrs. Lawson may have wished for, she’s a pretty perfect Domenica Lawson as far as I can tell.
I thought Domenica’s father – Dominic Lawson – spoke for our family, at least, in contradiction to his wife’s negative outlook. And in Rosa Monckton’s defense, she did state that her husband did not share her views.
I understand and sympathize with parents like those shown who have polyhandicaps and autism and I know I do not fully appreciate the extent of the parents’ suffering (though I have known – because of our daughter – dozens of parents of kids with a wide spectrum of disabilities).
One issue that was brought up, but wasn’t really followed up, was the bullying behavior of neighbors, tormenting families of children with disabilities (which led to a murder/suicide).
When children are integrated into regular schools, into society (and certainly not when they are isolated in institutional settings), society is obliged to face up to its members who are far too often invisible, who are not standard models, but who have the same human rights the non-disabled population has. Institutionalization, in my view, absolutely contributes to a public perception that disabled people barely exist and shouldn’t really be there at all.
Sorry, and all my sympathy to parents who are struggling with problems related to their child’s disability, but their story is not ours.
November 11th, 2009 at 2:04 pm
Dear Rosa
Really appreciated the programme last night. It was good to see this difficult issue explored from the view point of parents and to hear other parents share feelings and opinions I have often felt. I have a daughter aged 10 who is on the autistic spectrum, and can behave like the young lad with AS at times. She has a sister with ADHD which is the worst combination in one household. One of the mothers stated how it is a constant battle to get needs met. That I feel, is the hardest part, going to court to receive the correct rate of DLA, fighting the education authority for your child to be statemented, or for the right school.
Thank you for making the programme. It would be great if you could make another one.
November 11th, 2009 at 11:16 am
Dear Rosa Monckton
Re: BBC 1 10.35pm 10 Nov 2009
I was very touched when watching the above programme on television last night. I thought you showed a great deal of empathy towards the parents and their disabled children/teenagers. I thought how poignant to bring our current Prime Minister’s situation, also the Leader of the Conservative Party into discussion, regarding their disabled children, sadly one of whom is now deceased. It would be a great step forward to have someone in charge as a link for all help which could be offered for parents who struggle to find help with their everyday needs/requirements. My heart ached for many of the situations in which these fine, caring and devoted parents found themselves, to try to gain an extra nappy was heartbreaking. A big “thank you” for bringing such a situation to our living room, we wish you well in your endeavours and, believe me, my husband and I count ourselves fortunate in having been blessed with two healthy daughters and two healthy grandchildren. May God bless you all who suffer in times of need and despair.
Mrs Diana Manock
Eccles, Manchester M30 9JB
November 11th, 2009 at 8:12 am
Dear Rosa
I have hardly been able to think of anything else this morning after watching your TV documentary last night. I found the programme quite mind blowing — that families are left to cope on their own to raise disabled children.
I was shocked and disgusted that the lady with the 12 yr boy in Poole was asked to weigh her child’s urine and faeces to prove that she needed more than 4 nappies. Just what has this country come to! That poor woman – I sooo wanted to help her.
I am very fortunate to have 3 healthy children of 11, 13 & 15, and at nearly 50 my later in life option to have children was a risk. I just wanted to say, well done to you for highlighting a plight that needs to be tackled. And if this or the next Government can do anything to make life easier for these people — fantastic. I would like to be kept posted on developments, and when my husbands salary is no longer subject to a 20% pay cut, maybe we could help financially. Best wishes to you and all that you have done so far.
Karen Harle
November 11th, 2009 at 4:59 am
I watched the programme on bbc1 last night and thought it ‘hit home’ in many ways – especially regarding the lack of support available to carers.
I myself have a 23 year old son with cerebral palsy. He attends a day-care centre five days a week. This enables me to work and do a job that I love — which is a teaching assistant.
Coming to work every day is my social life but there are consequences for me working. I do not get carers allowance (DWP say I earn more than the £92 limit and I don’t care for Jonathan for more than 35 hours each week!!!) He comes home at 4.30 each day and is with me every weekend so they have that wrong but still won’t agree to giving me the allowance.
Any repairs to Jonathans lift/equipment has to be paid by him; his incontinence pad allowance is four a day (but at present I am fighting to have this raised to 6).
I could write pages on the battles, arguments, obstacles and frustrations I have met in the last 23 years. I adore my son and have always been determined to give him the best quality of life that I can. His sister is 26 and she has learned over the years how difficult it is cope at times with having a disabled person in the family.
My marriage ended because of the stress of everything and my ex-husband couldn’t cope with it all. I thought David Cameron spoke very candidly about his son Ivan and the challenges he and Samantha faced when they had him but I wonder will he change anything for the better should he become the next Prime Minister?
This programme was long overdue but there needs to be more like it and people need to be made aware of the on-going problems that there are for carers.
As I said I could write pages on this issue but thank you Rosa for highlighting the problems met by families — please keep the pressure on so that things can change for the better.
Tricia Hutchison