Working together to support disabled parents

About local, joint-working protocols

The role and development of local, joint-working protocols

Written procedures that are agreed by all agencies are key to ensuring that support is delivered effectively to people whose needs cross service boundaries.

Services for supporting parents with additional requirements and their families are necessarily spread over a number of services and agencies, each working to different priorities, budgets, time frames and, to an extent, legislation. Yet there is increasing emphasis throughout the UK on the need for joined-up working to safeguard and promote the welfare of children. In England this has coincided with the organisational separation of children’s and adults’ social care services. If existing differences between the services are not to grow wider still then there is an urgent need to develop effective links across services for children and specialist services for adults. It is therefore more important than ever to develop agreed procedures and approaches to address the following issues:

The benefits of universal and specialist protocols

A universal protocol is one that encompasses a range of additional support needs, although it may also refer to procedures which will apply in certain circumstances. Some agencies have developed an overarching universal protocol that lays out the general principles of supporting parents with additional requirements and the procedures to be followed. In other places, agencies have developed protocols that cover particular groups of parents, such as those with mental health support needs or those with learning disabilities. Some agencies have also developed protocols covering specific circumstances, such as where a pregnant woman with additional support needs requires multi-agency support.

A key advantage of a universal protocol, when used in addition to specific procedures covering particular groups of parents, is that it establishes the principle that support should be made available to all parents in a way that families experience as non-stigmatising and approachable. The division of services into relatively impermeable compartments can be a source of great frustration and difficulty for families whose needs span administrative categories. A universal protocol means that possibilities for continuity and flexibility are maximised, and provides a framework within which specialised services can be accessed as and when needed.

The good practice survey conducted for the SCIE knowledge review 11 illustrated the importance of a universal protocol in supporting parents effectively in a wide range of situations. The good practice examples demonstrated that universal protocols clarify the arrangements to be followed in a range of circumstances, from situations in which children’s services will not necessarily be involved, through to complex, urgent and difficult situations that involve both adults’ and children’s services teams. A universal protocol to which all relevant services are committed makes it easier to achieve continuity without undue dislocation as and when urgent needs and crisis situations arise. It also provides a firm foundation and framework for the development of protocols to cover specific groups and situations.

Developing protocols: common goals and local application

The preparation of local protocols frequently arises out of local awareness that the needs of some parents and their children are not being adequately met. Protocols have also been developed in response to specific difficulties that have arisen when service divisions and agencies have worked together. In fact, the good practice survey found that developing joint-working protocols is an important part of the process of achieving joint-working between agencies. Furthermore, as has been said elsewhere, 'the collaboration required to produce them [protocols] is also a model for good working practices in applying them’.(1)

At the same time it is useful to be able to draw on other agencies’ experiences of developing joint protocols. While the specific context will always be relevant to the development and content of local protocols, there is great value in learning from other agencies’ experiences of tackling challenges.

Parents a protocol should cover

All the good practice examples of joint protocols have adopted the broad and inclusive definition of 'disabled parents’ employed by the Joseph Rowntree Foundation’s Task Force on Supporting Disabled Adults in their Parenting Role. This definition includes:

Note: The term 'Deaf’ (with a capital 'D’) is used to describe someone identifies as part of the Deaf community and who uses British Sign Language (BSL). The term 'deaf’ (with a lower case 'D’) refers to someone with a hearing impairment who may or may not use BSL.

This guidance covers two broad groups of parents:

People who come under the legal definitions of disabled person used by community care legislation and/or the Disability Discrimination Acts 1995 and 2005. In brief, this means people who are substantially and permanently affected by physical and/or sensory impairments, long-term medical conditions, learning disabilities or mental health problems.

A larger group of parents who have support needs in addition to those of most parents. This group includes parents with: physical and/or sensory impairments; permanent and/or long-term health problems; learning disabilities; and mental health problems. It does not include parents whose difficulties do not meet the 'substantial’ and/or 'permanent/long-term’ criteria contained in the two legal definitions of 'disabled person’. This larger group also includes parents who have problems related to drugs and/or alcohol. Some of these parents will meet the legal definition of disabled person because of impairment/illness associated with their drug and/or alcohol use. SCIE knowledge review 11 provides an overview of the estimated numbers of parents in each of these categories.

The knowledge review on which this guide is based found that for services to become more genuinely inclusive they need to be more responsive to the cultural requirements of black and minority ethnic groups, and other groups such as Deaf people. The review also highlighted the importance of addressing more consciously the needs of disabled fathers, disabled kinship carers and grandparents and non-disabled kinship carers and grandparents who are involved in caring for the children of disabled relatives.

Involving parents is key to developing successful protocols

Pressure from parents has sometimes prompted local authorities to improve communication with parents and the coordination of responses to parents’ needs. Disabled people in particular have prompted and been involved in the development of protocols in many places. However, there would seem to be very little involvement of parents with mental health problems and/or drug and/or alcohol problems in the development of protocols and policies for partnership working. It is important to involve a range of parents in the development of protocols and to make particular efforts to involve under-represented groups whose points of view are seldom heard. There is a section in this guide about involving parents in developing protocols.

Studies of joint-working protocols for supporting parents with additional requirements have noted a qualitative difference between protocols where parents have been involved (2)(3) in their development and those where parents have not been involved. The issue of approachability in particular is more likely to be addressed in the former.

Parents also have a key role to play in monitoring and evaluating the effectiveness of protocols in practice (as Norfolk County Council did in their protocol).

Agencies and professional groups a local protocol might cover

No single agency or professional group can meet all of the needs arising in families where there are disabled and/or ill parents. Local protocols provide an opportunity to establish working arrangements that systematically involve relevant participants across health, social care, housing, parenting support, welfare rights, advocacy, early years’ services and education in the statutory and voluntary sectors.

The following statutory services were all involved in one or another of the good practice examples: community care services (younger people with a physical disability and older people), sensory support, drug and alcohol action teams, community mental health teams, learning disability teams, children’s services, education, housing, primary care trusts, hospital trusts, midwifery services, hospital labour ward, post-delivery teams, psychiatric inpatient services, carers’ services (including young carers), adult education and leisure.

A range of non-statutory bodies were also involved in some places, particularly in the consultation phases of developing the protocols. These included local and national disability organisations, welfare rights advisory services, parenting and family support services (including Sure Start), counselling and advocacy services and young carers’ projects.

While adults’ and children’s social care services are the key statutory services involved, careful consideration should also be given to the need to work with other agencies and professions with which families are likely to come into contact. Once inter-agency cooperation on supporting parents is in operation it has been found that specific gaps can be more readily identified and addressed.

For example, gaps and difficulties can be identified in:

Given the wide range of statutory and voluntary sector services which have a role in supporting families with parents who have additional support requirements, it would be unwieldy to form a working group that represented all local organisations and services that need to be aware of and part of the protocol. At the same time it is vital for its success that relevant services are familiar with the protocol and have a sense of ownership over it.