Prejudice, discrimination and low expectations are the major barriers preventing improvements to the lives of severely disabled people with learning difficulties, according to a report commissioned by the government.
But Professor Jim Mansell says in his report that adults with “profound intellectual and multiple disabilities” usually get what they and their families want and need if they are supported to use personalised services.
Research suggests there are about 16, 000 people with profound intellectual and multiple disabilities in England, who all have great difficulty communicating, limited understanding, and high support needs.
Professor Mansell said: “A common experience appears to be that families are told that they cannot have the services they need because their needs are too great.”
His report, Raising Our Sights, says the government should ensure personalised services are offered to more adults with profound intellectual and multiple disabilities, which could offer “a clear break with the low expectations of the past”.
It calls on councils to ensure that enough personal assistants are trained in person-centred approaches to communication and support, while health and social services should ensure families can secure support from user-led organisations.
It also says more should be done to improve people’s choice and control through the use of communication aids and assistive technology, while wheelchair services should provide more “smart” powered wheelchairs.
Beverley Dawkins, who chairs the Profound and Multiple Learning Disabilities (PMLD) Network, is Mencap’s PMLD national officer and was an adviser to the review, said families who took part said personalised services “had not been easy to put in place but had eliminated a lot of the previous problems they had been experiencing”.
She added: “The evidence from families was very clear – that personalisation was working for them.”
But she said there was a need for the right “support mechanisms” to help people with personalised services as these families had needed to be “pretty determined”.
Professor Mansell also called for more to be done to ensure that self-advocacy organisations can represent people with profound intellectual and multiple disabilities.
Andrew Lee, director of People First, a self-advocacy organisation run by people with learning difficulties, said it was difficult for organisations like his to assist people with high support needs because of a lack of funding.
He added: “Self-advocacy groups are probably seen as an easy target [for cuts] in the current climate we are in. I am worried that a lot of policy-makers are not following as best as they should government policy to improve the lives of people with learning difficulties.”
He said the problem was made worse because many people with high support needs found it difficult to obtain the necessary communication aids.
Phil Hope, the care services minister, said it was “reassuring” that the report highlighted the “positive effect” of the government’s “continuing focus on personalising services”.
He said the government would “consider each recommendation carefully and respond as soon as possible”.
Meanwhile, the government has published new online resources as part of its Valuing Employment Now strategy, which aims to “radically increase” the number of people with moderate and severe learning difficulties in work by 2025.
The resources, including a short film featuring eight people with learning difficulties who have jobs of at least 16 hours a week, are at: www.valuingpeople.gov.uk/venresources
23 March 2010