Disabled parents are undermined by poor support and negative attitudes, says task force

“I asked for a community care assessment that never happened. At the time I got nothing … But now they have turned it around and are telling me all the things I have to do to keep my kids.” Disabled parent giving evidence to the task force.

Social services, the NHS and schools working with disabled parents and their children, need to radically re-think attitudes and procedures that are undermining family life. Inadequate support, unequal access to services and the negative views of staff can be as much a barrier to good parenting as disability itself, according to a task force established by the Joseph Rowntree Foundation.

The task force, made up of representatives from Government, social services, voluntary groups and disabled parents’ organisations, spent two years taking evidence from parents, professionals and researchers. Its final report identifies examples of good practice, but also lists a catalogue of policy and practice failures that have placed disabled parents and their families under stress. For example:

• Disabled parents commonly face assumptions that their impairment or illness is placing their children at increased risk of deprivation, potential harm or abuse. Many social care professionals appeared to assume that disabled parents need ‘care’ rather than support in their parenting role, and that their children would be better off with a non-disabled parent.
• Advice from the Association of Directors of Social Services that disabled parents are entitled to assistance with parenting tasks from the adult community care services is being ignored. The task group was told that in some areas the only help offered to families was through children who looked after their parents as ‘young carers’. There were cases of children whose parents had learning difficulties or mental health problems being taken into care by local authorities without any assessment of parenting support needs.
• Parents with ‘mild to moderate’ learning difficulties who are ineligible for many adult support services face particular problems. The task group heard that social services would often only respond to parents’ problems if their children were placed on the ‘at risk’ register – making them vulnerable to losing their children into care.
• Disabled parents face significant barriers in accessing health services, including ante-natal and maternity care. In some hospitals the maternity unit is the only ward that doesn’t have facilities for disabled people. Parents reported that positive attitudes among staff and good practice – such as hospitals where a member of staff was designated to check their needs – made a huge difference to their experiences of the NHS.
• Schools and education authority policies focus on the needs of ‘young carers’ rather than building a relationship with their disabled parents. Some schools were physically inaccessible and parents felt that teachers who labelled children as ‘young carers’ held low expectations of their potential.

The task force expressed concern that the Government’s recent decision to develop local Children’s Trusts and to move responsibility for children’s services away from the Department of Health to the Department for Education and Skills will create an even wider gap and lack of communication between local care services for children and adults than already exists.

The report calls on the Government to consult with disabled parents and to issue a national protocol and practice guidance for assessing their needs. It also proposes changes in child protection guidelines to ensure that disabled parents’ support needs are assessed before decisions are made about their capacity to care for their children.

Other recommendations include giving disabled parents better access to information, advice and advocacy services, and to direct payments that would enable them to manage their own assistance. Changes to the Independent Living Fund’s trust deed are required so that direct grants can be made to assist disabled people with parenting as well as their personal care needs.

Jenny Morris, an independent researcher and author of the report, said: “There are major problems in the relationship between children’s services and adult community care services that could get worse under the arrangements being introduced unless positive steps are taken at both national and local level.”

“But beyond the policies and practice protocols, a change of attitude is needed. Disabled parents who gave evidence felt that professional thinking and needs assessments were overwhelmingly focused on their incapacity as parents, rather than identifying the right support to enhance their parenting skills and ability. Early support, delivered by knowledgeable, non-judgmental managers and staff, would make a tremendous difference to parents’ ability to look after their own children.”