Loved ones ‘written off’ by services, study finds

Prejudice, discrimination and low expectations are preventing people with profound intellectual and multiple disabilities from getting the support they need, a government-commissioned report has found.

The study, by Professor Jim Mansell of Kent University, said families had significant caring responsibilities and were being denied support because their loved ones were being “written off” by services.

An estimated 16,000 people in England have a profound learning disability and other impairments and their number is expected to grow by 1.8% a year until 2026. Despite their high support needs, Mansell said many lived well into adult life, recognised people around them and enjoyed activities and relationships.

He cited research published by Mencap in 2001, which found that 60% of parents or profoundly disabled children or adults provided at least 10 hours a day of physical care, while almost half received no support from outside the family.

Mansell said problems included risk aversion and discriminatory access procedures for services that specified that some people were “too disabled” for care staff to cope with. He also said they were denied access to assistive technology that could help increase their quality of life.

However, he said good practice did exist around the country, which was based upon tailing support to the needs of individuals, whether they were living with their parents, in their own homes or in shared accommodation.

In most cases, this had involved using self-directed support, which required having trained personal assistants who could communicate effectively with people with profound intellectual and multiple disabilities.

Among 33 recommendations, Mansell called for:

• Services for profoundly disabled people to be developed in line with the personalisation agenda, focusing on the quality of the relationship between staff and the service user.

• Councils to ensure that sufficient numbers of trained personal assistants are avialable to meet the needs of this client group.

• Councils and primary care trusts to keep up-to-date information on the number, needs and circumstances of profoundly disabled people.

• Councils and PCTs to commission short breaks that meet the needs of this client group.

With the cost of care packages for people with profound intellectual and multiple disabilities ranging from £63,000 to £179,000 a year, Mansell said the changes would not require more money, but using existing resources in a more person-centred way, improving outcomes.

The Department of Health commissioned the study as part of the Valuing People Now agenda to improve the life chances of learning disabled people. It is due to respond to Mansell’s report shortly.

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