People with learning disabilities are being banned from seeing their families

The Challenging Behaviour Foundation is calling for systemic change that recognises the expertise of families of people with learning disabilities and takes their safety concerns seriously.

This follows an ITV News investigation that found that 45 families of people with learning disabilities are being restricted or banned from visiting them after complaining about negligent care.

The charity says it is seeing a growing trend towards the punitive use of contact orders, which are legal orders applied by the Court of Protection when a local authority or public body thinks that contact is causing harm to a person who lacks the capacity to make their own decisions about how often they see their family.

They are intended to be applied in a person’s best interests, yet the ITV investigation found that visiting rights were removed or restricted by private care companies and local councils when a family raised valid concerns about the support they received. 

Family contact is fundamental for people with learning disabilities

The charity said that when concerns are raised, they should be considered and addressed, as the right to a family life is protected under the Human Rights Act. For people with severe learning disabilities whose behaviour challenges – who often cannot communicate verbally, need lifelong support, and cannot raise concerns in writing – family contact is fundamental to their wellbeing and safety.

Jacqui Shurlock, CEO of The Challenging Behaviour Foundation, told ITV News: “There’s 100% a system that’s letting families down and that causes the disputes over the quality of care and the differences in contact. The court is only able to look in the individual’s best interest in terms of what’s actually available from the local authority. 

“So, the local authority is putting on the table support for this individual with this provider with a contact order, or no support. And so, the decision then is made to go with that in the best interest of the individual, but really the best interest of the individual would be a much higher quality care in the first place.”

She added that there is a lack of understanding about how to work well with families, especially when they’ve experienced that kind of trauma throughout their relatives’ lives. People are often labelled as difficult, whereas in fact they have a justified scepticism about what providers, local authorities, or health bodies are doing, given their previous experience.

Long-term local support is needed

The charity is now urging commissioners to invest in building sufficient, high-quality, long-term local support and services for people with severe learning disabilities, rather than focusing on annual budgets.

In addition, discussions and decisions about contact should be person-centred and involve everyone affected. Risks should be weighed against benefits, including the importance of family bonds, the protection and security they provide, and the joy they bring to people’s lives.

It stated that partnerships with families are essential and that, when disagreements arise, a collaborative approach is needed to resolve them. If restrictions are necessary, they should be necessary, proportionate, time-limited, and reviewed with clear evidence. There shouldn’t be blanket rules or restrictions imposed because of a single incident.

A Department of Health and Social Care spokesperson told ITV News: “Maintaining meaningful contact with loved ones and carers is essential for the health and wellbeing of residents in care homes and patients in hospitals or hospices. It is unacceptable for any patient or resident to be punished for raising concerns.

“CQC guidance states that complainants must not be discriminated against or victimised. In particular, people’s care and treatment must not be affected if they make a complaint, or if somebody complains on their behalf.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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