How CAN the State think it knows better than a family’s love?
ROSA MONCKTON’s daughter has Down’s. But now she’s over 18, her parents could be overruled about her care – so they’re fighting for the rights of all those like them
The love that a mother feels for her child transcends all others; the need to nurture, support and guide that child into adulthood is a visceral feeling, with a propelling power of its own.
My younger daughter, 23- year- old Domenica, has Down’s syndrome, so her journey into adulthood is solely chronological, not intellectual. her needs are particular and far from obvious to those who don’t know her extremely well. (Apart from anything else, her speech is difficult to understand).
It would therefore seem self-evident that I and our family, who love her unconditionally and have done so much over the years to keep her safe and happy, should be the ones to help her make life-changing decisions. She is very suggestible, and would say yes to almost any request without at all understanding the consequences.
And yet, at the end of March I found myself at the Royal Courts of Justice in London with two other warrior mothers, Caroline hopton and Lucy Mottram, bringing a test case to challenge the current law, which — unbelievably and cruelly — can prevent us making what the law calls ‘ best-interest decisions’ for our children with learning disabilities, simply because they are over the age of 18.
The relevant law, the Mental Capacity Act 2005, states that decisions on behalf of a disabled adult should be taken collectively by everyone interested in their welfare — which in practice means agents of the State. As a result, families are often ignored, and decisions taken without them even being consulted.
Parents can apply through the courts to be named a disabled person’s welfare deputy, giving them the final say, but because of the way the courts currently interpret the law this is granted only in ‘the most difficult cases’.
This is a highly unsatisfactory term as it has no precisely identifiable or commonly understood meaning. Our campaign is to remove that requirement, so we can take responsibility for our children’s welfare — as is only right and sensible.
When
Domenica was born, we were given all kinds of grim prognostications by medical specialists — none of which turned out to be true — but no-one ever warned us how the State can prevent you from exercising the care that you know your child needs.
I would like it to become commonplace for parents to be handed welfare deputy status, so they have the authority to make decisions on behalf of their children, rather than these being made by professionals who barely know the individual, if at all.
Who knows a child best? Might it be the mother who raised them, stayed up with them night after night for years without sleep, who understands what they cannot say, who fought to get them into
education, battled with the labyrinthine benefit system, lived uncomplainingly in a parallel universe of mind-numbing exhaustion — the mother who cries herself to sleep worrying about how to secure the child’s future when she is dead? Or the siblings who have grown up with them and who love them?
Or could it be the State that knows best? expert advice is always desirable, of course, especially in medical situations, but a human being is more than a set of case notes, and what’s best for them depends on more than just a clinical assessment.
Diana, Princess of Wales, who was Domenica’s godmother, and who had more empathy and emotional understanding than anyone I have ever met, got it absolutely right when she said: ‘A mother’s arms are more comforting than anyone else’s.’
Of course, I understand that there will be cases where parents do not have their child’s best interests at heart, and in those the State should step in.
Yet if a mother has devoted her life to looking after her disabled child, the State should listen to her, treat her with respect, and acknowledge she knows her child better than anyone else.
Only this week I was contacted by the mother of a profoundly disabled woman with a mental age of two, whom care workers said was entitled to ‘sexual experiences’. her mother is horrified by the care staff’s decision to ‘help her in this’, when it is obvious that her daughter has no ability to give informed consent.
We have had heart- stopping moments with Domenica over the years. As a child she had no sense of danger, and disappeared on numerous occasions. Once in the Scilly Isles, another time at Charles de Gaulle airport in Paris, and another close to home — an occasion which involved police helicopters and kind neighbours scouring the woods.
Just thinking about these episodes makes my pulse race, and I can still feel the dreadful, searing panic as I tore home from a meeting in London when I received the call that Domenica was lost. She is more sensible now, and more aware of ‘stranger danger’, but I don’t think she will ever travel on her own, or live independently. As her mother, I have always tried to focus on the things she can do, rather than what she can’t. We give her as much independence as is possible, while keeping her safe, and involve her in all decisions concerning her welfare.
however, the underpinning ethos of the Mental Capacity Act is to give people like Domenica control over their own destiny, because they are adults in the eyes of the law.
But as Ruby Fisher, the parent of an adult man with severe learning disabilities, put it in her evidence to the Lords select committee on the Act, all too often this approach makes the individual more vulnerable, not less.
We submitted video evidence of Domenica to the court, too. In the clip she is asked by Daina, her principal carer, who she would like to look after her, and to make big decisions for her. She was very clear: ‘You, my mummy and my daddy and my sister.’
Asked where she would like to live when she is older, she paused and replied ‘I’d rather live in the moment’. Domenica is a worrier — she has a morbid fear of the death of those she loves, and she does not want to imagine a world where they are no longer around. Who else but those close to her would understand this?
Would the faceless State understand that she has such a terrible fear of the dark, that she has to sleep with a light on in the corridor, and her door wide open?
Would they know that on a trip to the dentist Domenica cannot sit in the dentist’s chair? That if she has to have a tooth out it requires a hospital visit and a general anesthetic? That the noise of a baby crying will send her running from the room? That whichever film she watches will influence what she wants to be?
That she still sleeps with six teddy bears in her bed, and Plum, the favourite, is the one who travels with her? That she loves her dogs, and tells them all her secrets, and that the dogs that have died still live on in her imagination, and that she prays for them every night?
I have tears in my eyes as I write this. Tears for all those parents who have been sidelined, yet left to pick up the pieces when things go wrong. For mothers who have come to realise it is not about what their child needs, but about how much their child costs.
And because the idea of a shared humanity, with the more able looking after the vulnerable in a kind and compassionate way, is lost in the bureauratic boxticking of the State.
THE fee for this article has been donated to the charity Team Domenica (www.teamdomenica.com)