Learning from #JusticeforLB

Open Letter to Sir Stephen Bubb

Dear Sir Stephen,

Over the past four months, as an outsider to the debate, I have been given the opportunity to listen to the experiences of adults with learning disabilities and their families.

I have learnt much through involvement in two on-going campaigns to achieve accountability in cases where young people in institutional care have died.

Much strong opinion has been expressed by those with learning disabilities, their families and the research community, that institutional care cannot meet their needs.  They argue that they have an equal right to family life under Human Rights legislation. Anything other than that is discriminatory.

With regard to the unsuitability of institutional care, I have noted these key points:

1. Inconsistencies in Care
Many people react badly (challengingly) to any sort of change, which is difficult to avoid in a staffed institutional environment. As a result they are classified as problematic, subject to heavy medication,  restraint and identification as a risk to themselves and others. This leads to long term incarceration in an institution.

2. Disregard for Family Input
When they reach 18, learning disabled people become adults, so it is all too easy for their families’ opinion to be sidelined. Their detailed, in-depth knowledge of the person’s background and needs can be ignored, undervalued or disregarded by paid carers and professional personnel.

3. Quality of Staff and Management
To put it bluntly, sadists, bullies and idlers find working with the vulnerable attractive. This is especially so when their skill set does not enable them to find better remunerated employment elsewhere.
Once trapped in an enclosed institution with no protection from family or friends, people with learning disabilities are at the mercy of such staff.

Even in a less extreme situation, being dependent on disinterested or careless staff makes life hard to bear. It also increases the likelihood that you give up trying to do the things you attempted or enjoyed in a different environment.

(Poorly motivated staff can’t be expected to make life in an institution an enabling or positive experience. Consistently good care demands staff be properly supported, managed, trained and offered a financially rewarding career structure)

The image of a small unit offering intelligent, imaginative approaches to individual care is superficially attractive, but many in the user community do not feel the same way. They want the independence, choice and individual approach that an institution cannot accommodate.

3. Waste of money
Institutional care is expensive.  If the user communities say it does not meet their needs, then the money given over to their care is being wasted or mis-spent on this type of provision. 

My overall impression is that decision and policy making bodies are seen as too limited in their vision of how care for learning disabled adults can be managed, thinking in terms of buildings and professional organisation, rather than flexible approaches to community and family based care.

Highly paid executives are also seen as remote from the realities of the lives of learning disabled adults and their families.

I would like to believe that the gap between these different perspectives is not insurmountable, given good will and honesty on both sides. 

With best wishes