As she prepares to retire from Mencap, Dame Jo Williams (pictured) looks back at achievements in learning disabilities during her tenure, but highlights the glaring gaps in funding and human rights.
During my time as Mencap’s chief executive, progress has been made on learning disability issues. We have seen £370m funding for short breaks for children with a learning disability, many people have been transferred from NHS campuses to supported living accommodation, and government policy on learning disability is focused on meeting people’s individual needs.
But as I retire from Mencap, I have yet to see as much action to protect the human rights of the 1.5m people with a learning disability.
In 2008, a report published by the Joint Committee on Human Rights stated that “for many adults with a learning disability, the violation of their human rights is seen as a normal part of their everyday lives”. The lack of public outcry when the report was published was shocking.
Crisis in social care
Adults with a learning disability and their family carers are suffering because of cuts to services and rationing of social care. Support services that help people with a learning disability remain independent, such as day centres, further education classes and care at home have been reduced.
Every effort must be made to get better value from existing funding. But with 75% of local authorities overspending their learning disability budgets in 2005-6, it is clear that funding is not keeping pace with demand. In July this year, the Learning Disability Coalition published Tell it like it is, a hard-hitting report that showed that the underfunding of social care is having a significant adverse effect on people’s lives.
In a recent report commissioned by Mencap, Professor Eric Emerson found that “it is not possible to estimate the numbers of adults with learning disabilities in England either from information held by central government departments or from large-scale, population-based surveys”. The situation for estimating future demand has to be based on sound information if people with a learning disability are to get a fair deal in the adult social care green paper.
The learning disability community has long called for a more personalised approach to care. A system that gives people with a learning disability more control over their lives brings clear benefits. The personalisation agenda must benefit people of all abilities. People with profound and multiple learning disabilities, who often need more specialised care, must not be overlooked.
Action on healthcare
Access to equal healthcare is one area where we are making good progress. In July this year, an inquiry sparked by Mencap’s Death by Indifference report, found that people with a learning disability are being discriminated against in the NHS, which is leading to unnecessary suffering and death.
There has long been a desperate need for mandatory learning disability training for all healthcare professionals, and for people with a learning disability and their families and carers to be at the centre of all decisions made surrounding their healthcare. Finally there is some recognition of this.
We now look forward to the Department of Health and the NHS delivering on these strong recommendations.
People with a learning disability and their families still feel that life is a battle at every stage of life there are barriers to overcome.
The legislation is now in place to protect and promote the human rights of all in our society, and yet people with a learning disability continue to face discrimination and find their rights overridden and overlooked.
I hope that Mencap and the organisations concerned with learning disability will continue to work together and with government to pursue equally and inclusion. I am greatly heartened by the new leaders in the learning disability world, individuals who themselves have a learning disability and are now speaking out and demanding full participation.
Joint work and mutual support across the sector will, I believe, lead to real progress.
This article is published in the 4 September issue of Community Care magazine under the heading Head’s report: could do better
Dame Jo Williams is chief executive of Mencap and chair of the Learning Disability Coalition. She will speaking at the Community Care conference on personalised services for people with learning disabilities taking place in central London on 8 October. Book here