Families Want To Have Final Say In Deciding Their Children’s Futures
The parents of three young people with learning disabilities are going to court to challenge the current law which prevents them being able to make best interests decisions on behalf of their children as they are now over 18.
Under the current law, parents are responsible for their children up until they become adults, at which point the Mental Capacity Act states that decisions on their behalf should be taken collectively by everyone interested in their welfare.
But the parents argue that often in reality this means that the families are ignored and decisions are taken without them being consulted. They say that frequently these decisions are taken by social services departments who don’t know their children and that funding is a more important factor in such decisions than their children’s best interests.
Campaigners believe this has led to officials making “terrible decisions” on behalf of young people who lack capacity to decide for themselves.
Three separate families from London, Brighton and Windsor have instructed specialist public law and human rights lawyers at Irwin Mitchell to bring a test case. They want to amend the Code of Practice which governs the courts’ interpretation of the Mental Capacity Act.
They want it to become commonplace for parents to be handed ‘welfare deputy’ status. This would see parents granted decision-making authority on behalf of their children where this would correspond with their children’s wishes and is deemed by the courts to be in the young person’s best interests. At present the courts only grant the status in a handful of rare and complex cases.
Expert Opinion“We have heard many first-hand accounts about how parents feel side-lined and powerless to help their children when they turn 18.
“The parents have the best interests of their children at heart and, having done what’s best for them during their childhood, want to be able to continue this. They are, in reality, the experts in relation to their own children’s views and wishes.
“Of course we accept that the court will need to make decisions on the facts of each particular case, but our clients believe this should be focussed on the young adult’s views and wishes and their best interests, without having to show that their application is ‘one of the most difficult’ as the Code currently requires.”
“We are hopeful that the courts look favourably on the parents’ case.” Alex Rook - Partner
The families want the courts to look much more favourably on the applications of family members in the future. They have launched a crowdfunding appeal to help bring the case which is listed for three days in the Court of Protection at the Royal Courts of Justice, and continue to seek support from other families in similar situations.
For more information visit www.crowdjustice.com/case/3forall/
Rosa Monckton, 65, has been a disability rights campaigner for more than 20 years. She was made an MBE in 2017 for her work.
Rosa’s daughter Domenica, 24, has Down’s syndrome.
Rosa said: “Domenica mentally still functions very much like a child. In many cases, when assessments of their capacity and best interests for these life-changing decisions are made, parents are unaware, not invited or even asked not to be in the same room.
“When my eldest daughter, Savannah, was making decisions about what universities to apply for, what she should study and where she should live, we sat down as a family and to help her make these decisions. I would like to be able to do this for, and with, Domenica.
“I do not understand why it should be necessary for me, a responsible and loving parent, to have to go to court and show that our case is exceptional for the right to do what is best for my child.
“I have spoken to hundreds of parents who have told me about the terrible decisions that the courts have made because they don’t know the person in question.
“This case is just not about Domenica but for all those parents who don't have a voice, yet who are united in the extraordinary love they have for their children and who know, better than any organisation, what is right for them.”
Caroline Hopton has two sons who have been diagnosed with autism.
Oliver, her youngest son, is non-verbal and has sensory and eating problems. Because of his needs he lived in residential care when he was younger, returning home in September 2017
Caroline, 56, said: “The decision to place Oliver in residential care was the hardest I have ever had to make or will make in my life. It was heart-breaking but he needed specialist support.
“However, things did not turn out as I hoped. While there was some great staff there were many I believe who lacked the ability to assist vulnerable people.
“Oliver is now living back at home and it is imperative that I gain welfare deputyship status in order that I can advocate for him going forward. The changes to my son's anxiety levels and general demeanour, since he has returned home, speak volumes. I not only feel that I have my son back in person but also in spirit.
“These and other experiences have taught me so much about the system of care in this country and I am severely concerned for the futures of both of my sons and others in the same position.”
Lucy and Simon Mottram’s son Oscar, aged 23, has autism and suffers from severe learning difficulties, epilepsy and anaphylaxis.
They are campaigning for change after the family faced huge difficulties when Oscar’s care moved from children to adult services within the local authority.
Lucy said: “Like many parents with a profoundly disabled child, we have made it our mission to create around Oscar a world that makes him feel valued, where he can learn and increase his independence and experience some of the pleasures that life has to offer.
“With apparently little regard to their own care plans, and dismissing all offers to help in every possible way, we feel that attempts are being made to reduce his support to the point where he will be at huge risk. The decision-makers don't know our son at all, in many cases have never met him, and our years of experience and accumulated knowledge seem to count for very little.”