Review: Adults with learning disabilities "wrapped in cotton wool"

Monday 18 February 2019

Adults with learning disabilities feel "disempowered" and stripped of their independence due to what's being described as an "over-protectionist" approach towards them in Jersey, a major safeguarding review has found.

Commissioned by the Safeguarding Partnership Board, the review saw many people raise concerns about human rights and how they are being “wrapped in cotton wool."

Adults with a learning disability, family carers and staff reported a lack of any accessible or easy-to-read information about safeguarding, which affects “independence, choice and control.”

“How can an adult with a learning disability take control and stop abuse or raise concerns if they don’t have the understanding and awareness of what abuse is, what it might feel like?” the reviewers, independent consultants Judi Thorley and Jackie Lawley, wrote.

Both have experience of working with people with a learning disability, their family carers and staff within both health and social care direct provision, and they said that empowering adults to know what safeguarding is, is essential “to reduce vulnerability”, help adults stay safe and determine their choices. 

The reviewers also found that little is being done to ensure adults have a voice in decisions directly affecting them. “Capacity and consent are a key driver/lever for transforming lives by putting people first,” they said, adding that Jersey adopts a “paternalistic, mothering attitude", often taking decisions for adults with a learning disability without involving them in decisions.

Adults with a learning disabilities and family carers described experiences of “disempowerment" and not being supported in making decisions about "‘where and who I live with, having friends and a job’".

One individual reported that even though they have their own flat, care staff do not always knock when they enter. Another explained that when they felt poorly, their boyfriend was not allowed to come and see them - something they were not consulted on.

Pictured: Adults with a learning disability do not always feel valued as citizens, the review has heard.

The reviewers said they had found “limited evidence” of the Government “actively seeking to engage and consult with family carers", either in policy change or in development of service provision.

They noted, for example, that adults with learning disability and family carers had not been involved in the development of the Capacity and Self-determination Law and that most were not aware that it had come in force in October 2018. 

Ms Thorley and Lawley recommended adults with a learning disability and family carers be involved in developing learning disability awareness training for the wider community, including care providers, the Emergency Services, and businesses to promote equal rights, while dispelling “any traditional myths that perpetuate over-protective/risk averse and paternalistic views and attitudes".

Pictured: Beresford Street Kitchen was praised for setting a progressive example of “inclusion, engagement and empowerment".

Praise was given in the review to Aspire Charitable Trust, which set up Beresford Street Kitchen - a café lauded as a progressive example of “inclusion, engagement and empowerment of adults with a learning disability”. They described the initiative as “a genuine partnership”, which helps adults developing “life skills, confidence and independence.” 

The reviewers commented: “Their vision to create the community presence and an inclusive workforce where people with a learning disability are regarded positively and with respect is providing opportunity for individuals and at the same time an example for other providers to build on.”