Proven Practice: Self-advocacy and complex needs

 The Social Care Institute for Excellence recommends self-advocacy as a way of ensuring people with learning disabilities and complex needs are not left behind in personalisation reforms

The personalisation agenda has strengthened the role of individuals in shaping their own care but research has shown that people with learning disabilities and high support needs are likely to be left behind in social care provision.

The term “learning disability and high support needs” refers to a person who requires a large amount of support because they do not communicate with words and have significant barriers to communication or complex physical, emotional and health needs.

This could include people who have learning disabilities and sight or hearing difficulties, and those with autism or a mental illness.

A shortage of skills, understanding and provision of advocacy for these individuals means they do not have the same opportunities to be involved in the shaping of their individual support and wider planning of care.

Self-advocacy involves shifting the balance so that the views of people with high support needs are heard and their opinions reflected in the services they receive.

Although self-advocacy usually refers to an individual speaking and standing up for themselves, or being independent and taking responsibility for themselves, in the context of individuals with high support needs there is often a need for the involvement of an advocate to make their voice heard.

In practice

Self-advocacy for people with high support needs can be broken down into five models: rights-based, person-centred, Watching Brief (designed by Asist Advocacy in Staffordshire), witness-observer and best interest.

Some models focus on external factors such as housing, while others aim to achieve accurate communication with the service user.

A practice study concluded that person-centred approaches are central to effective advocacy and self-advocacy. It found a range of methods of intervention are being used including multi-media advocacy, storytelling, group work, self-advocacy, representational advocacy, non-instructed/non-directed advocacy, peer support, and peer advocacy.

A number of factors important to a positive outcome for service users were identified in the practice survey:

● General principles of engagement with people with high support needs should be established.

● Practical arrangements to plan and support care should be in place.

● Consideration should be given to of a full range of modes of communication that will be effective according to the needs of each service user.

● There should be collaboration with service users, their families and carers.

● There should be continuity of support.

The development of advocacy and self-advocacy for people with high support needs has been slow to develop because of perceptions that their decision-making capability is generally low, weaker evidence on the effectiveness of support, and a lack of advocacy service plans at a local level.

Service quality and assessment

Although the Quality standards for advocacy schemes (Action for Advocacy 2006a) provide nationally recognised standards for generic advocacy, no additional standards for people with learning disabilities and high support needs have been identified.

Evaluations of outcomes for people with high support needs are limited, in terms of their involvement with advocacy services and self-advocacy.

Furthermore there is an absence of accepted guidelines or standards for the monitoring of activity and outcomes which has led to little consistency in monitoring and recording advocacy for people with high support needs.

An assessment of training and development needs would contribute to a strategy for advocacy workplace development.

Communication challenges

The difficulty of communicating with people who do not use formal language is a challenge when supporting people with high support needs.

Successful techniques include supporting communication with technology, through intensive interaction and with From the Inside Looking Out workshops (which aim to develop “emotional literacy”), and person-centred planning, multi-media profiling and outcomes-focused approaches.

Budget management

Take-up of direct payments among people with high support needs is generally low.

Advocacy support is needed in managing direct payments and individual budgets so that self-directed support can become a possibility without putting further strain on families and carers.

Ethnic minorities

Black and minority ethnic service users are at further disadvantage because of the low levels of provision of services focused on them, despite greater incidence of high support needs.

Areas for improvement

To improve the services for people with learning disabilities and high support needs service providers should concentrate on the following five areas:

Cultural change: services should be geared towards enabling people to reach the full potential of their capabilities to facilitate self-directed support and involvement in shaping their own support and service development.

Evidence base:  for advocacy for people with high support needs should be created by researching the effectiveness of approaches, strengthening the focus on outcomes and commissioning research on gaps in the knowledge base.

Respond to the evidence base : services should be developed in line with the evidence base founded on reliable evaluation and best practice.

Utilise the Adult social care workforce strategy (DH 2009):  build personalisation into the education and development opportunities provided to local advocacy services and practitioners by identifying roles required to facilitate self-directed support, clarifying a framework through which advocacy development happens, raising the profile of the evidence base, and using collaborative development commissioning based on local needs and services

Improving service commissioning : base it on local needs assessments including the views of families and carers who are supported in their involvement as well as the best evidence of effectiveness and finding regimes that support service reliability.

Further information

SCIE Adult Services Report 22: Personalisation and learning disabilities, www.scie.org.uk 

Practitioners’ messages

● Services should be informed by best practice in advocacy organisation.

● Management should encourage awareness and adoption of the evidence base for interventions and encourage ongoing development and innovation.

● The profile of monitoring and evaluation of service delivery should be raised to encourage the delivery of appropriate methodologies and interventions. It will also support the development of an evidence base.

● Communication needs vary from person to person and decisions about the most appropriate modes and technologies of communication should be based on individual assessment.

● Person-centred planning should be encouraged with collective implementation of support plans.

● Collaboration with families and careers should be encouraged.

Research abstracts

Author: ACTION FOR ADVOCACY

Title: Quality standards for advocacy schemes: based on the advocacy charter

Publisher: London: Action for Advocacy, 2006, 28p

Abstract: This guidance will assist commissioners with a set of agreed standards with which to commission and monitor advocacy schemes, as well as providing schemes themselves with a mechanism to demonstrate their quality and commitment to agreed principles. These are accompanied by A Code of Practice for Advocates.

Author:  HESLA Bret, KENNEDY Mary Kay

Title: We have human rights: a human rights handbook for people with developmental disabilities

Reference: Cambridge, MA: Harvard Law School Project on Disability, 2008, 28p

Abstract This booklet aims to help people with developmental disabilities to learn about their rights and to talk with others about their rights. The booklet is in two sections, Your Rights and Building Skills Together. Your Rights covers areas such as equality, safety, home and family, privacy, independent living, employment, education, health, and political life. Building Skills Together covers issues including independent living in the community.

Author: CARPENTER Barry, EGERTON Jo (eds)

Title: New horizons in special education: evidence-based practice in action

Reference: Stourbridge: Sunfield, 2007, 230p

Abstract: This book presents new ways to enable children with severe learning disabilities and autism to learn, and is based on the evidence of seven years of research by professionals working with children and young people at Sunfield. Projects included communication and self-advocacy, community access, health and mental health, family inclusion, curriculum development, psychology and therapies, and the arts. Contributors include therapists, psychologists, teachers, teaching assistants, care workers, social workers and catering staff, along with families and children.

This article is published in the 8 October issue of Community Care magazine under the heading Self-advocacy for people with high support needs