THE PARENTS of a woman with learning disabilities will go to court to earn the right to have a say over her care.

Rosa Monckton MBE, 65, wants to challenge how courts apply the rules around the Mental Capacity Act for her daughter Domenica in Brighton.

Domenica has Down’s Syndrome, but because she is now 24, Mrs Monckton says she has lost the sole right to make the decision about her daughter’s care.

Many parents are simply not consulted or ignored, leading to officials taking decisions instead.

She 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.

“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.”

Mrs Monckton said it was a stark contrast with her other daughter, when her whole family were able to sit down and make a decision about which university she went to.

She will join other families to mount the legal challenge, and hopes to earn "welfare deputy" status where it corresponds with their children's wishes and is deemed to be in the persons' best interests by the court.

She said: "“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.”

Irwin Mitchell partner and legal expert Alex Rook said that at present, parents only get a say in the most exceptional of cases.

He said: "We have heard many first-hand accounts about how parents feel sidelined 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.

"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.”

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