Time to act

We regard ourselves as a civilised society with a respect for human rights. And it is right that we should take extra care to support young people and those with disabilities. But the brutal truth is that we are failing to protect some of our most vulnerable children and young people – those with autism and learning disabilities. And indeed, worse than that, we are currently detaining and inflicting terrible suffering on them and causing anguish to their distraught families.

The horrific reality is that children and young adults with autism and learning disabilities are being sectioned under the mental health act and taken to specialist hospitals with poor conditions, far away from their families. They are being detained for months or even years on end when they should be in their community. The recent Panorama programme showing the taunting and abuse of vulnerable young patients in Whorlton Hall exposed this horrific reality and it has put the inhumane treatment of people in institutions back under the spotlight, eight years on from a similar scandal at Winterbourne View hospital.

The pathway from diagnosis to detention is tragic. What happens is this: A family grow worried about their child and raise concerns with the GP and with the child’s nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All the while, families are struggling on their own, without the appropriate help for their child.

Parents who ask for government support soon find they have to battle for it – on top of holding down a job, whilst also trying to provide a peaceful home not only for their child with autism but also for their other children. Their living situation becomes impossible.

As the child gets older, families find it harder to cope. The problems mount and the mother gives up work so she can be there for her child at all times. The family income suffers, which leads to them relying on a complex, inadequate benefit system. Families ask for extra care support, but due to austerity, find their care package is going to be cut back. There are not enough specialist beds or local services to support the child.

As the situation worsens, parents are told that their child will have to go into hospital temporarily. Families are not being told about the proposal before it goes to the panel which makes the decision. They are not allowed to attend the panel. Then, the child is taken miles away from their home and placed with strangers – losing the familiarity and routine which is so essential to their wellbeing.

The parents are desperately concerned. They have difficulty visiting their children. But their concerns are treated as hostile and they are seen as a problem. The child gets worse and suffers physical restraint and solitary confinement – which the institution calls ‘seclusion‘. The child gets even worse, so plans to return home are shelved. The days turn into weeks and then months.

This is such a grim picture, yet these are the stories of families up and down country. And their experiences have come across powerfully in their evidence to the inquiry being undertaken by the parliament’s joint committee on human rights, which I chair. The media has exposed some of this, and we’ve had a compelling report too from the children’s commissioner, Anne Longfield.

Action is urgently needed – and the solutions are not complicated. First, there must be extra resources so that diagnosis is prompt. There must be extra funding too to support the child continuing to live with the family at home. (Institutional care is, in fact, more expensive to the public purse but it comes from the NHS rather than cash-strapped councils). Parents must be supported to continue to work. Councils’ housing policies must ensure that families with a child with autism can be appropriately housed.

The family should be recognised as the people who know the child best and must be put at the heart of the decision-making process. Residential hospital care – where it’s absolutely necessary and not just because of a lack of community support – must be near the child’s home to allow the parents to visit regularly.

The parents should be asked regularly if they are happy with the care their child is getting and any concerns immediately acted on. There should be proper complaints procedures which can be anonymous. And there remains a major question mark over the Care Quality Commission, the regulator of this provision. It had certifi ed Whorlton Hall as ‘good’. In doing so it provided parents with false reassurance and helped shield their children’s abusers. A regulator which gets it wrong is worse than no regulator at all.

Our country is prosperous and values human rights. We cannot turn away from the suffering of these children and their families. It’s time to act.