'Vigilant family members play a vital role in a well-run care setting'

"The problem with parents is their expectations are too high."

So said a senior council official in a discussion with me about adult social care provisions. But family members with high expectations are the best guarantee of the quality of care for people with disabilities.

I recalled this comment while watching a recent Channel Four News report about an out-of-court settlement made by the National Autistic Society with a family over its "systematic failure" to meet the needs of Martin Hussey, a 54-year old man with autism at a care home in Croydon.

This court case arose following concerns reported by Martin’s sister Jules and supported by a former care manager at the home about standards of personal care and his protection.

Instead of providing gold standard care, Jules said the National Autistic Society "tried to ignore, dismiss and belittle the failures in Martin’s care – failures which had a huge impact on his physical and mental wellbeing and his safety".

The former manager revealed that when she was appointed, she was warned that "your biggest problem will be Jules Hussey", who was labelled "a troublemaker" for raising concerns about her brother’s care.

This is a familiar story for parents and other family members who speak up on behalf of individuals with autism, learning disabilities or mental health problems. Like Jules, they receive reassurances and promises but are often left feeling that the issues they have raised have not been addressed.

The transition from children’s to adult care services brings a new range of problems for families as the structure of the school day and the support of a large staff are replaced by more limited community activities. When concerns arise parents soon discover that they have no formal rights in relation to their adult children who now come under the authority of care managers and social workers who may have little knowledge of the individual and sometimes limited professional experience or expertise.

Families who have become experts through the experience of caring for a child with disabilities should be respected. As the Hussey case confirms, vigilant family members play a vital role in ensuring the quality of care and protection to which every person with a disability is entitled.

Mary Langan is chair of Severe and Complex Needs Families Group.