To think that as a parent you have given much of your life over to  caring for your autistic child with complex needs and no mental capacity and when they reach 18, the authorities don’t have to include you in any decision about them is beyond upsetting. Sometimes the only way a parent can be included is to  fight for something called ‘Deputyship’ or go for a Judicial Review. Not many can afford the thousands of £ needed to do this and why should they…’

Article from The Times below:

‘Parents of children with autism and other learning disabilities want to use a test case to challenge a law that sidelines families when a child turns 18.

Rosa Monckton, whose daughter, Domenica, 23, has Down’s syndrome, said that although the children might technically be young adults, they lack the mental capacity to make key decisions.

Monckton said she had heard from “hundreds” of distraught families who had been ignored as officials made “terrible decisions” for their children.

Under the Mental Capacity Act 2005, parents who want to be the decision maker for a young adult must ask the Court of Protection for “deputyship” — awarded only in very difficult cases.

Families sidelined by law on over-18s with learning disabilities