SCIE Guide 19: Working together to support disabled parents

In this guide

Involving parents in developing protocols and parent support services

Parents have a key role to play in developing protocols and designing and delivering services. Their involvement is particularly important in ensuring that procedures and services are accessible and non-stigmatising. They also have an important contribution to make to monitoring and evaluating the implementation of protocols.

Involving parents is the key to success

The involvement of parents helps in a number of ways:

For families, the approachability and accessibility of services is key and their involvement keeps this issue to the fore.

Parents and children provide an essential family perspective on procedures that may originally have been designed around organisational concerns, such as assigning financial responsibility.

Parents are well placed to help develop and disseminate information for service users and to develop and pilot tools, such as self-assessment forms.

Parents’ stories (whether of unmet need or successful parenting) help to motivate and inform professionals and can increase commitment to new approaches.

Parents’ participation in the planning and delivery of training has a positive impact on practitioners.

Parents whose views have been seldom heard are often keen to make a contribution and improve the support available to other parents.

Parents bring their wider organisational and community resources and contacts to the process. They act as a conduit for exchange of information.

Parents and young people are often in a position to make contact, inform and reassure others who have unmet needs in ways that statutory services cannot. These informal contacts can help to reduce parents’ fear of contacting statutory services for support.

As new systems are developed parents can feed back on whether the protocol is being implemented and how it is experienced by parents. They can also provide important feedback on service provision.

It is important to involve parents fully from the outset and at all stages of the process, including in monitoring and evaluation.

Facilitating parents’ involvement

No one parent can represent the range of experiences and views of all parents covered by the protocols, so a range of views should be sought. However, many parents have valuable insights about the commonalities between different groups who experience difficulty in accessing services.

Parents with additional requirements are drawn from sections of the community whose points of view are seldom heard. It will therefore be necessary for local authorities to make particular and continuing efforts to involve these under-represented groups.

Meetings should be arranged at times that disabled parents will be able to attend (for example, allow plenty of time before the end of school or arrange to meet working parents in the evening).

Meeting venues should be physically and geographically accessible and held in places where parents feel comfortable (for example, a local parents’ centre rather than council offices).

Any communication and facilitation needs should be addressed. Sometimes parents will prefer to make their contribution via advocates/intermediaries.

All costs, including transport and childcare should be met, if necessary at the time of meeting. It may also be appropriate to pay parents fees for their contribution

Parent reference groups may need funding to hold meetings, whether they are part of or independent from existing user organisations.

Parents will need up-to-date information about social service structures, responsibilities and obligations.

Some parents will require skills training to become trainers themselves.

Contacting parents

Relevant local support organisations and peer support groups concerned with disability issues and particular impairments and also those designed to support parents and families should be approached in the first instance. Particular attention should be paid to involving groups of parents who rarely find themselves consulted, such as parents with drug- and alcohol-related problems, mental health difficulties and parents from underrepresented local ethnic minorities.

A creative approach is needed to approach parents who tend not to be involved in existing voluntary organisations (whether oriented around disability or parenting) and whose views are seldom heard. Some parents who are currently service users may be keen to be part of the consultation and feedback process.

This guide provides details of the following national organisations which may be able to facilitate contact with individuals and or groups:

A range of impairment-specific and other disability organisations are also listed. In addition, the parent and family support organisations listed in the resource section may be able to supply local contacts.