Both family life and the experience of disability can be full of changes, expected and unexpected, so that the compartmentalisation of services into separate divisions that in practice are often hard to move between can be a source of great frustration for families.

Preventing problems

The Social Care Institute for Excellence (SCIE) in the UK has commissioned a piece of work to encourage local authorities to follow the good example of places where adults’ and children’s services are working together to meet any additional support needs that disabled parents may have, in good time to prevent problems from arising within families.

For many years, disabled parents and their organisations have expressed their concern about difficulties in getting support in their parenting role. In 2000, A jigsaw of services, reporting on a national inspection of services to support disabled adults in their parenting role, found that families were falling between adults’ and children’s services, with needs remaining unaddressed by either service, unless and until a serious and, in many cases avoidable, crisis was reached.

Task force

In response to the Jigsaw report, the Joseph Rowntree Foundation (JRF) set up a Task Force on Supporting Disabled Adults in their Parenting Role. A survey of all English local authorities found that one in four had policies/protocols covering parents with physical and sensory impairments and/or learning difficulties. The majority of these were either in draft or in the early stages of use. A number of them had been written some years before but had never been fully implemented or had fallen into disuse.

In its final report, the JRF Task Force made the recommendation that local authorities should develop specific procedures and strategies aimed at helping them to deliver a prompt and co-ordinated response to disabled parents and their children. In 2003 Stephen Ladyman, then Minister for Communities, speaking at the launch of the JRF Task Force report, said that the Social Care Institute for Excellence would produce a national protocol to assist local authorities to help move this process forward.

Identifying good practice

As a first step towards fulfilling this commitment, SCIE commissioned a knowledge review, consisting of a literature review and a good practice survey (see report by Jenny Morris and Michele Wates on the SCIE website). Following the recommendation of the Joseph Rowntree Foundation’s Task Force, the knowledge review adopted a broad and inclusive view of ‘disabled parents’. The range includes parents with additional requirements related to physical and/or sensory impairments, learning difficulties, mental health, drug and alcohol misuse-related difficulties, and those with serious illnesses, including HIV/AIDS. It includes parents who may or may not identify with the term ‘disabled’.

These parents look to a variety of adult services for the additional support which they require in their daily lives. They share a common need for these services to recognise and respond to their needs as parents. They also share in common the risk that, if these additional support needs remain unmet, their children’s welfare may suffer and their ability to do as good a job as they want to do as parents may be undermined.

The literature review and good practice survey found that without clarity and co-ordination of the different roles and responsibilities of adults’ and children’s services, there is a danger that the cohesion and functioning of families will be compromised. At the same time, there is evidence that eligibility thresholds for both adults’ and children’s services can mean that parents’ support needs are not addressed in time to prevent avoidable and, in some cases, potentially serious problems from arising. In addition, parents often feel wary about approaching children’s social services for support because they are anxious about the response they will receive, and these fears can deter them from seeking help before a crisis point is reached.

The good practice examples given in the knowledge review provide encouraging evidence that flexible and non-stigmatising forms of support to parents and families can be achieved across a wide range of impairments and health-related situations and across the spectrum of levels of family need.

Preventative support to parents may be needed across a variety of different levels of need and in a range of family circumstances:

• preventing unnecessary problems from arising by addressing specialist parent support needs for information, equipment and assistance
• anticipating and where possible preventing family crises, which could lead to children being accommodated by local authorities
• supporting parents where children have been removed from home, with a view to reuniting families where possible
• post-crisis support aimed at anticipating and preventing future difficulties.

Protocols and systems

The second part of the work commissioned by SCIE, due for completion in early 2007, is to produce guidance and resources to encourage local authorities to write protocols and put flexible, joined-up systems in place as part of an on-going commitment to uphold the welfare of children by offering appropriate support to their parents.

What is the role of a local protocol? A protocol is the recording of an agreed way of acting, to achieve an agreed purpose. Local protocols – jointly agreed between children’s and adults’ social care agencies (and sometimes including other agencies such as health, housing and education) – would aim to promote effective support for disabled parents and those with additional support needs by enabling agencies to establish clarity about their respective roles and responsibilities; agree and jointly own procedures for all stages of the relationship; and ensure a joined-up approach to families’ needs.

The adult social care agenda places increasing emphasis on independent living and full participation, while the children’s agenda emphasises the necessity for agencies to work together to safeguard and uphold the welfare of all children. Encouraging local authorities to create joined-up strategies to support parents with additional support needs in the interests of children is more timely than ever.

References

The SCIE knowledge review and resources by Jenny Morris and Michele Wates can be seen or downloaded from the publication section of the SCIE web site: www.scie.org.uk