Parent carers ask to have more input to council decisions

Parent carers of adults with learning disabilities could have more of a say in shaping services provided by Brighton and Hove City Council.

The prospect was discussed at a Brighton and Hove City Council meeting yesterday (Tuesday 13 June).

A parent carer, Tina Cioci, asked councillors to set up an “adult social care forum” specifically for parent carers of adults with learning disabilities so that they can speak directly with the council.

She was addressing the council’s Adult Social Care and Public Health Sub-Committee at a meeting at Hove Town Hall.

Ms Cioci also asked if the forum could include as co-chair a parent with lived experience of caring for their adult child.

She said: “I would like a parent carer chair to set the agenda with the head of service.

“For example, the social care charge, the day centres and activities, the transport need, the care plan assessments, the care plan reviews, the support in hospital or in a mental health crisis, the housing plans.

“Those are some of the issues I would like to set up for our parent agenda with the head of service or an elected chair of the parents in Brighton.”

She added: “I’m particularly interested in the severe and profound learning disability adults, those who cannot speak for themselves and are reliant on their parents.”

Labour councillor Tristram Burden, who chairs the sub-committee, said that the short answer was yes.

He offered to send more information about the various services that the council works with to support families caring for adults with learning disabilities as part of a more comprehensive written response.

Councillor Burden said: “The council recognises how important it is to hear the views and experiences of family carers with adults with learning disabilities.

“Learning disability services work with several care support and advocacy services including Speak Out, the Parent Carers’ Council (PaCC), Amaze and the Carers Centre.”

The council’s executive director for health and adult social care Rob Persey said that the council was looking at ways to involve people with lived experience, including co-chairing meetings and setting agendas, such as the recently formed Autism Partnership Board.