Health and social care services are failing disabled parents and their children, a report published today suggests.

Disabled parents told the report’s authors that health and adult social care professionals assessing their needs often ignore the parenting implications of their impairment and fail to communicate with their counterparts in children’s services.

Meanwhile, children’s social care professionals too often see the parents’ impairment as a potential risk to their children and prioritise monitoring over meaningful parenting support that would keep families together and avoid crisis interventions. Disabled people are therefore too anxious to seek support for fear they will be seen as failing.

The research was undertaken by the Tilda Goldberg Centre for Social Work & Social Care at the University of Bedfordshire and Ginger Giraffe, an organisation that brings together disabled people with health and social care students on placement.

The funding was provided by the DRILL (Disability Research on Independent Living and Learning) programme, a £5m scheme led by disabled people and funded by the Big Lottery Fund.

The report includes accounts from disabled parents, including those with mental health problems. It shows that health and social care professionals are not following government guidelines around family assessments and eligibility for social care support.

One parent told researchers: “You don’t want to call social services, you are scared to call them because they might think you are incapable of looking after the child, so you have to struggle with what you have… because then they will say, ‘we told you she’s disabled, she can’t look after her child’, so there’s always that element of fear, of ‘shall I or shall I not?”.

The report concludes that children are largely invisible to adult social care and health professionals. One parent with mental health problems said that when she was sectioned she was asked if she had any pets that required care but not about her children.

Social care professionals planning post-discharge support for a mother of two children who had broken her back decided she should receive meals on wheels – but that food would not be provided for her children.

The same woman told the research team of a later experience: “Somebody knocked on the door and they said they were a children’s social worker. I panicked, I thought ‘what did I do wrong for them to come in?’, and I asked, ‘who sent you here?’ and they said, ‘Oh it’s because you are disabled’.”

Director of the Tilda Goldberg Centre at Bedfordshire, Professor Emily Munro said: “It was shocking to find that many disabled parents were often too scared to ask for help from social services for fear of being judged unfit to look after their children. There needs to be a more collaborative working relationship between children’s social care and adult services to ensure disabled parents can access the vital they need in order to fulfil their parenting role.”

Director of Ginger Giraffe Dan Vale added: “The power of this research is that it is truly coproduced by our disabled parents and the social work professionals, resulting in an authentic and eye-opening account of the experiences of a group of dedicated mothers and fathers whose disability proves no barrier to parenting, but for whom support was haphazard and ill-coordinated.”

Sue Bott from Disability Rights UK said: “This research gives a much-needed voice to disabled parents. Now professionals and policymakers need to listen to them. While we recognise the complex demands facing health and social care professionals, they should work with each other and with disabled parents to provide the support that keeps families together”.