Smash hit

This painful story has a much wider significance. It throws into sharp focus the question of who decides for people who have difficulty deciding for themselves — which is the subject of the Mental Capacity Bill due to receive its third reading next week.

What interests me particularly is not euthanasia nor other problems of capacity, such as accidents or dementia. I’m concerned about the role of families of people with learning disabilities in making such decisions.

It’s clear from this story that Andrew’s extended family cared most about him and understood his needs best. Who better than they to help him decide, or if need be to decide for him, what would suit him best? However, the role of families in the lives of adults with learning disabilities has been problematic for years. Unfortunately, those who hoped that the new bill might clear up some of those controversies and uncertainties are likely to be disappointed.

Common sense would suggest that there ought to be a strong presumption in favour of the family. In practice there often is, because most people with learning disabilities live with their parents into middle and old age. But in cases where people wish to live more independently, with social services support, the parents’ natural role evaporates, at least in law.

When things go well, that need not matter. If social services have a good relationship with the family as well as with the client, what happens is useful co-operation; that has been my family’s experience. The government’s white paper, Valuing People, expressed a very welcome insistence on the importance of family involvement but it can be ignored in practice, as the ombudsman found in Andrew’s case.

Things don’t always go well.

I have files full of letters from angry and grieving parents whose adult children have been somehow hijacked by officials who are at best indifferent and at worst hostile to family involvement. In a few tragic cases, families have been cut off from their grown-up children, through persuasion and undue influence, when social workers will not accept parents’ or siblings’ views about what’s best.

There is a conviction in disability theory — and the world of disability is highly politicised — which holds that if adults with learning disabilities are to enjoy their right to independence they should, like all other adults, leave the sphere of influence of their families.

Besides, this thinking goes, families tend to be overprotective, risk averse and are to be mistrusted. In any case, it continues, professionals know best (and incidentally, have tight budgets to balance).

In practice this means some social workers and other professionals, educated in such theory, are inclined to cut parents out of their adult children’s lives, particularly when they disagree about important decisions. This antipathy to parents is recognised. It has even been described as “parentitis”.

In many ways people have moved on parentitis. Yet there is little or nothing in the bill to reassure families of people with learning disabilities that they can expect to have any greater or even clearer role in decision-making than before, except in unusual circumstances. I very much hope that MPs at the debate on Tuesday will consider how central such families truly are and ought to be and why their role does not seem very central in this bill.

The Mental Capacity Bill has caused a great uproar recently, because of euthanasia.

Those fears are extremely important, of course, though I think they’re misplaced, but they are understandable. It is terrifying to contemplate a time when, because of illness, an accident or senile dementia, one cannot make decisions for oneself.

And this bill is all about who decides for those who lack the capacity to decide for themselves.

minette.marrin@sunday-times.co.uk