The parents of three young people with learning disabilities launched legal action in the Court of Protection to challenge the current welfare deputyship law, which relates to how decisions are taken on behalf of adults over 18.

Under the current law, the 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, and the family should only be appointed as welfare deputies in ‘the most difficult cases’.

The families from London, Brighton and Windsor instructed specialist public law and human rights lawyers at Irwin Mitchell to bring a test case. During a court hearing in the Court of Protection in March, lawyers argued that the Code of Practice which guides the courts’ interpretation of the Mental Capacity Act should be amended.

The Honourable Mr Justice Hayden, Vice President of the Court of Protection, then handed down a judgment ruling that there should not be a starting presumption against the appointment of a welfare deputy and that the “wording of the Code of Practice… requires to be revisited.”

Alex Rook, a partner at Irwin Mitchell who represented the families, says: “This challenge was brought because our clients and many other parents believed that the law, which stated that they would only be appointed as deputies in ‘the most difficult cases,’ needed to be changed.

“All they want is to be able to help their children have the best chance in life but felt this was not happening because of how the law was interpreted.

“Our clients appreciate that the court will need to consider every application on its merits, but welcome today’s ruling. They hope that now the Judge has clarified that the Code needs to be redrafted, making it clear that there is no presumption against them being welfare deputies, it will become more common for family members to be appointed as welfare deputies.

“Although the Judge has suggested that in the majority of cases a welfare deputy will not be needed, our experience and that of our clients is that in many cases it would indeed be in the young adult’s best interests for their family to be able to continue to make decisions in their loved one’s best interests where they are unable to make the decision themselves.”

During the case it was argued that families were ignored and decisions were being taken without them being consulted. The families said that, frequently, these decisions were taken by social services departments who did not know their children and that funding was a more important factor in such decisions than their children’s best interests.

At present, parents are only appointed as ‘welfare deputy’ status in rare and complex cases.

Among the parents behind the case was Rosa Monckton, 65, a disability rights campaigner whose daughter Domenica, 24, has Down’s syndrome.

Also involved was Caroline Hopton who has two sons with autism including Oliver, who 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 after he was abused by the carers who were supposed to be supporting him.

A member of staff was found guilty in June 2019 of “ill-treatment or wilful neglect by a care worker, contrary to Section 20(1) of the Criminal Justice and Courts Act 2015,” and is awaiting sentencing. Meanwhile, Lucy and Simon Mottram’s son Oscar, aged 24, has autism and suffers from severe learning difficulties, epilepsy and anaphylaxis.

They joined the campaign after the family faced huge difficulties when Oscar’s care moved from children to adult services within the local authority.

Lucy said: “All our efforts go into ensuring that Oscar feels valued and receives the support he needs to flourish. Our experience is that while others involved in his care may be well intentioned, they do not know him and so cannot make informed decisions as to what is best for him.

“Today’s announcement is a step in the right direction to ensuring correct decisions are made when it comes to the futures of all young people with disabilities.”

Victoria Butler-Cole QC of 39 Essex Chambers acted for the three families in this case.