Engaging with people who have a learning difficulty

The major disability faced by people with learning difficulties is not their difference from others. The major disability is...the systematic exclusion of people with learning difficulties from valued, contributing, participating roles in the community. 1

"It takes a bit more time for me to work things out". 2

People with learning difficulties can speak up for themselves, and those without verbal communication can express their choices and preferences. They need to work at their own pace, and within their own timeframe. For example, sense of 'future' might be limited to what is going to happen today.

Engaging more effectively with people with a learning difficulty

Some suggested ways of involving people with learning difficulties include:

  • Using non-verbal means of communication. Pictures, photos and symbols can help to make information accessible, and act as a tool for supporters where information needs to be explained 3
  • Observation can be used where people cannot communicate directly, to identify indicators of quality of life, such as taking part in meaningful activity 4
  • Role play to allow practice of situations, and drama to convey information and promote discussion

Obtaining expressions of views can be difficult where people are anxious to please. Learning to be assertive, defined as: 5

  • Knowing what you want
  • Having the confidence and being able to express needs and opinions honestly and openly
  • Having skills to negotiate with others
  • Respecting the rights of others

is a recognised and important part of working with those with learning difficulties.

It has a wider application, and could usefully form part of the preparation for all service users to promote effective and more inclusive participation.

The self-advocacy organisation People First gives guidelines for involving people with a learning difficulty in meetings: 6

  • Begin with informal gatherings to allow all participants to meet, get to know and become comfortable with each other
  • Keep numbers smaller
  • Use jargon free clear language
  • Give clear explanations
  • Listen carefully to contributions
  • Accept that time and patience will be needed
  • A supporter may be needed, at least initially. This person should be independent, and guidelines should be developed so that their role is understood by all.

We all take time to develop 'meeting skills' and it would seem that these principles could benefit us all. It is suggested that limited participation may raise concerns about tokenism, but commitment to the right of someone with a learning difficulty to be involved means that their very presence will influence thinking. 7

See Guidelines for making meetings more accessible & Swindon People First Contract

There are useful skills and experience to be shared across disciplines
See Engaging those who do not communicate conventionally & Engaging people with dementia & Johnson's review of studies on communication

Some examples from practice

A local learning disability day-care service used art, music, drama and audio visual media to find creative ways for people with a moderate to severe learning disability to express their views. They explored issues under the headings of integration, accessibility, empowering users, life planning, and specialist support services. Sessions were videotaped so that interpretations could be checked and discussed. Workers' assessments of the original 4 workshop 'trial' established the value of the work. It identified the need to be able to undertake such work at a slower pace over an extended period.

Creative Ways of Working Towards Seeking Service Users' Views North Lincolnshire Council Social and Housing Services 1997

 

The National Development Team worked with Grampian Health Board to review services for people with learning disabilities. The researcher worked with a group of service users, their relatives and staff to develop their interview skills, producing an 'Interview Information Pack'. 300 people were then interviewed by their peers; relatives by relatives and so on. 8

Some research findings

Research was carried out to obtain a user perspective of what service standards should be adopted. 9

The researcher met 3 times with 5 groups of users. At the first meeting the research was explained and the groups invited to take part. At the second service standards were derived using 'The Five Accomplishments' (King's Fund 1980) as a framework, each written on a flipchart sheet with supporting symbols or pictures. (See Monitoring & Standard setting)
The third meeting shared the standards identified by all the groups, and individuals were invited to comment, using happy or sad face stickers to facilitate participation of those who found verbal comment difficult. Thus each individual had an opportunity to support or reject the group-derived standards to reach a final list of eight.

Factors promoting successful involvement of people with learning difficulty in staff recruitment were found to be: 10

  • Commitment of staff
  • Involving trade unions and personnel departments
  • A user involvement ethos within the organisation
  • Willingness to experiment and learn from experience
  • Involving people with learning difficulties at all stages, from drawing up the job description, not just in the 'informal' parts of the process
  • Training, preparation and practice, including issues of confidentiality and equal opportunities practice. Where this was provided, and opportunity was given to practice interviews, including scoring candidates, discrimination and bias was rare

These principles could be applied to staff recruitment in any service area.

See Involving users in staff selection

References

  1. People First newsletter quoted in Morris J 1997 Community care: working in partnership with service users Venture Press Birmingham
  2. Flynn M 'Involving users at all levels' in Billingham K et al1999 Eds Making a world of difference: developing primary health care Royal College of General Practitioners p20
  3. Simons K 1999 A Place at the Table? Involving people with learning difficulties in purchasing and commissioning services British Institute of Learning Disabilities Kidderminster
  4. Nocon N & Qureshi H 1996 Outcomes of Community care for Users and Carers Open University Press
  5. Weston C 1999 'Speaking up for Yourself: Description and evaluation of an Assertiveness Training Group for people with learning disabilities' British Journal of Learning Disabilities vol 27 p110-115
  6. Whittaker A in Winn Liz Ed1990 Power to the People -the key to responsive services in health and social care King's Fund Centre London
  7. Whitaker as above
  8. Flynn M 'Involving users at all levels' in Billingham K et al1999 (Eds) Making a world of difference: developing primary health care Royal College of General Practitioners
  9. Wintersgill C 1996 What would make services good? Quality standards in services for people with learning disabilities- a user perspective. Research summary for the Leeds Coalition September
  10. Involving people with learning difficulties in staff recruitment JRF Findings series 1996

Other resources

Booth W & Booth T 1998 Advocacy for Parents with Learning Difficulties: Developing advocacy support Joseph Rowntree Research into Practice series Pavillion Brighton
» Report and evaluation of 18 month Parents Together project. Describes experience of advocacy support, strengths and limitations of advocacy as an approach, lessons for practice learned. Good section on the many and various roles advocates take on.

Caldwell P 1996 Getting in Touch - ways of working with people with severe learning disabilities and extensive support needs JRF Research into Practice series Pavillion Brighton
» Uses case studies to describe ways of engaging the attention of and communicating with, people with profound disabilities by finding the key to their own 'language' which might be through sound, vibration, or touch.

Stalker K et al 1999 If You Don't Ask You Don't Get Central Research Unit Scottish Executive
» Qualitative study of views of people with learning difficulties and their carers about health and social care services. Gives the 18 topic guides used for focus group work

CHANGE Picture bank
» Pack to increase accessibility of information, reviewed in Community Care 5-11 October 2000 p 38

The Quest System
»  A system to enable the evaluation of services for people who need long-term support that can be used by service users themselves. Developed and tested by the Quest Team based at the University of Hull. There is a version to assist people who find it difficult to read and to speak.
The East Yorkshire Learning Disability Institute University of Hull HU6 7RX

People First
» Groups run and controlled by people with learning difficulties to speak up for themselves. website www.peoplefirst.org.uk

Norah Fry Research Centre University of Bristol: http://www.bristol.ac.uk/Depts/NorahFry/

British Institute of Learning Disabilities www.bild.org.uk
» Research, resources and publications, newsletter, education and training

Engaging with disabled people

There is a well organised and active disability movement advocating for disabled people, but because of the diverse nature of physical impairment, many individuals are not represented in existing groups.

The social structures that disempower disabled people make it harder to reach them, because of their possible isolation, and the absence of the practical support they may need to participate.

Although most people with physical or sensory impairments are over 65, they are classed for service delivery purposes as 'older people', so their perspective on disability may not be included.

Disabled people report having good days and bad days, and may not know in advance if they will be well enough to participate. For this reason it is better to engage with a larger pool of people. Where there is involvement in working groups or committees, absences make it easy to lose the link and stop attending. Those who are absent need to be kept informed, for example, with a personal telephone call, not just through minutes. People might also take part in 'partnerships', so that if either person cannot attend the other can keep their partner informed.

See HealthLINK and Telephone discussion groups

Challenges in engaging with disabled people

You will need:

  • Information in accessible formats (The Disability Discrimination Act 1995 prohibits discrimination in provision of information)
  • To provide transport or transport costs and appropriate parking facilities
  • Accessible venues with comfortable facilities to minimise fatigue
  • Shorter working periods with adequate breaks
  • To pay for personal assistants where required
  • Communication facilitation where required
  • Outreach to those individuals who are not current service users
  • Outreach to those who are not represented by existing groups

Engaging more effectively with disabled people

A conference of disabled people made recommendations to overcome barriers to user involvement, and involve a wider range of people. 1

These included:

  • Developing a register of disabled people willing to participate, their interests, and preferred method of being consulted ( see below)
  • Individual views gathered through home visits
  • Telephone conferencing (See Telephone discussion groups)
  • Building a user network
  • Developing a newsletter

Developing a 'register' or database of potential contributors is a way of ensuring access to a pool of individuals, in addition to working with existing user groups. Such a register allows exchange of information, keeping service users and non-service users informed, enabling them to express views to influence service delivery, and giving feedback on how their views have been taken into account. While a co-ordinator may be needed to facilitate the project initially it has potential to become user-led. Registers of carers and of families with children with a disability are being set up locally. 2

Some practice examples

When disabled people who used community care services in Shropshire were asked to share their experience of assessment, care management and service delivery, they made more than 80 recommendations for making services more effective.

One result was that service users designed a new assessment model that they considered more relevant and easier to understand. They developed a leaflet for other users to explain the process of assessment and care management.

 

Mystery Shoppers

Lancashire Social Services used volunteer disabled people as 'mystery shoppers' to check facilities and staff awareness in telephone and face-to-face contacts with the department. The five month project cost £5,000. It was intended as a one-off exercise, but the information provided proved so valuable that the project was extended.

Community Care 6-12 July 2000

 

The Local Authority and Health Authority in Leeds worked together to look at services for disabled people with physical disabilities, find out if they were meeting people's needs, and propose changes. The development of a commissioning framework was overseen by a steering group including representatives from voluntary organisations. The emphasis was on consultation with disabled people (both using and not using services), carers, voluntary groups and the staff providing services. The various groups were consulted separately, then brought together to exchange views. The consultation included:
  • Meetings with a range of staff providing health and social care services
  • A survey advertised in the local press aimed at disabled people
  • Discussion with disabled people in care homes
  • Meetings with voluntary organisations

A conference, planned by an advisory group including disabled people, brought together all these groups, and also included people from the independent sector and other local authority departments. The consultation exercise provided:

  • Principles to guide service planning and delivery
  • Action points

A short, easy to understand report of the process was produced, and a team set up to ensure implementation of the action points. A reference group of disabled people is being established to:

  • Comment, and advise the team on proposed work and ways of working
  • Monitor work being done (or not being done) by the team
  • Bring ideas and suggestions for new areas of work to the team

Members of the group are provided with transport, personal assistance and any other access requirements, and receive an allowance for attending meetings. Feedback and progress reports are provided in a newsletter available in large print and on tape and computer disc.

Implementation Manager Mick Ward Thoresby House, 2a Great George Street Leeds LS2 8BB

 

Some research findings

The King's Fund studied service evaluations led by disabled people. 3

Evaluation seeks to answer the question 'is the money being spent making a positive difference?' (See Evaluation & Outcomes It examines:

  • how users experienced services
  • their appropriateness
  • their effectiveness in meeting needs
  • strengths and shortcomings
  • value for money
  • outcome in terms of quality of life

Where service agencies conduct evaluations both the process and outcomes will be influenced by their interests and perspectives. If evaluation is done from an independent base, number of responses and their honesty can be increased.

For service developments to be needs-led detailed information is needed from those who are expert in their own needs. In users being able to suggest solutions to problems the foundation for partnership working is established.

Users should conduct evaluations themselves, or at least be in a majority on the organising group. If they do not conduct the evaluation themselves they can act as consultants to the evaluators, actively participating in setting the terms, suggesting methods (which might include art, drama, use of case studies or life stories), analysing and presenting findings, and making recommendations.

Evaluation of two projects led by disabled people 4 showed that:

  • The planning phase took longer than expected, including identifying people to take part and providing support to facilitate their participation
  • Time was needed to avoid tiredness, allow for the communication and cognitive difficulties of both sides, and for both sides to 'unload' before a constructive working relationship could develop
  • A formal structure such as a steering group, with clear roles and responsibilities, was needed to manage the evaluation
  • Senior staff need to be involved, at least at the implementation stage, to authorise the process and influence change within organisations
  • Time spent gaining staff support was key to gaining access to disabled people, and staff attitude influenced whether they would respond
  • Clear statements and guarantees on confidentiality were important
  • There needed to be a code of practice for dealing with issues that arose , such as dealing with disclosed information, discriminatory views, and the procedure should a participant identify an issue they wanted addressed.
  • Adequate supervision and support was needed for peer evaluators
  • Ways of harnessing the skills acquired during a project should be considered (both study groups wanted to continue involvement)

References

 

  1. Bott S & Rust A Involving Physically Disabled users in Service Planning and Delivery: Shropshire as a Case Study Social Services Research Group Portsmouth University 1997
  2. For example: Listening To Families The East Riding of Yorkshire
  3. Bott & Rust 1997, as above
  4. Fletcher S Evaluating Community Care: A Guide To Evaluations Led By Disabled People King’s Fund 1995

 

Other resources

Living Options in Practice 1992 Project Paper no. 3 Achieving User Participation -Planning Services for People with Severe Physical and Sensory Disabilities
» A guide to the process of involving disabled people as partners in service planning and development, based on the experience of eight Practice Localities in England.

Engaging with people with a sensory impairment

Challenges in engaging with people with sensory impairment

When engaging with people with sensory impairments, and bearing in mind that many older people and other members of the public will have some degree of hearing or visual loss.

Consider: 1,2

  • Guiding needs of people with visual impairment, particularly in an unknown venue
  • Acoustics within the room, and background noise that will further diminish hearing
  • Good lighting - overhead fluorescent lighting is best - to facilitate the reading of information and seeing signers. It also enables those who lip read, or supplement their hearing as many people do, with lip reading and facial gesture
  • Positioning of speakers, signers and interpreters with thought to light sources, for example, avoiding shadows on face or hands, and against plain backgrounds
  • Provide information in the preferred format, in advance, to allow prior familiarisation
  • Introduce everyone present at the beginning so that people with visual impairments can locate each individual, and repeat your name when you speak to identify yourself
  • Pace speech appropriately, speaking clearly and in short sentences, but remember that shouting distorts sound
  • Interpreters and others having to concentrate hard need frequent breaks - at least five minutes every half-hour is recommended
  • Allow additional time for the slower pace needed for communicating with Deaf or Deafblind people - an extra hour for every two hours needed by sighted and hearing people is recommended

Engaging more effectively with people with a sensory impairment

A study exploring the barriers to effective involvement of Deaf service users 3 found that:

  • Lack of accessible information inhibited deaf people's ability to participate effectively
  • Staff needed training about the deaf community and British Sign Language to enable them to adapt procedures to allow participation
  • Deaf people needed training, including confidence raising and assertiveness to participate effectively
  • A strategy for building partnerships with deaf people was needed, to include roles for deaf people and the action to be taken to facilitate their participation
  • Deaf people preferred meetings in British Sign Language
  • A Deaf person as an independent link between deaf people and service providers was seen as valuing deaf people, and increased their confidence in the agency
  • "Relatively modest" resources to Deaf groups increased their potential to support involvement, and to work democratically within the Deaf community

See also:  RNIB Guidelines

References

  1. RNIB 1993 See it Right-new approaches to information for blind and partially sighted people
    » a guide to producing information in a format suitable for people with a visual impairment.
  2. Hicks G Making Contact - A good practice guide: how to involve and communicate with a Deafblind person Sense

    3. » Detailed guidance on: communicating directly, methods of communication, good practice in communication, contact through an interpreter, consulting with Deafblind people, meetings and conferences, code of practice for meetings involving Deafblind people, Braille and large print information.

  3. British Deaf Association & JRF Deaf people's participation in local services Social Care Research 77 1996

Other Resources

Stepping away from the Edge Department of Health 2000
» Improving services for deaf and hard of hearing people
www.doh.gov.uk/scg/steppingaway.htm

Engaging with people who misuse substances

Challenges in engaging with people who misuse substances

It can be difficult for people who misuse substances to become involved. By coming forward, people identify themselves as having a problem, or as taking part in illegal activities.

Tackling Drugs Together (1995) says that Drug Reference Groups should include user and voluntary sector representatives. However, the Central Drugs Co-ordination Unit surveyed 78 of 279 Drug Reference Groups, and found that only 15% had service user, self-help or parent group representation. 1

It is difficult to 'represent' the wide group that misuses alcohol and illegal or prescribed drugs. The concern is that strong local voluntary groups can mean that one model or way of thinking predominates. The challenge is to ensure that there is a balance by engaging with people from other sources. Ensure the people you want to engage understand that their personal experience can make a valid contribution to the strategic development of services.

Engaging more effectively with people who misuse substances

  • User groups and voluntary organisations are usually better placed than statutory agencies to work with people for whom uncritical acceptance and confidence in confidentiality is crucial
  • 'Snowballing', asking one contact to introduce others, can bring forward people who would otherwise not be included, and has also been used with homeless people, and other groups who are stigmatised

Experience from practice

A survey of user opinion was carried out to find out what a 'perfect service' would be like. 2

The study was overseen by an independent researcher from University College, London. A semi-structured self-completion questionnaire was used with people recruited from voluntary and statutory agencies and projects, and a prison project. A £5 Boots voucher was given to encourage participation. 504 current service users took part, with a gender, age, ethnicity and unemployment profile similar to the regional Drug Misuse Database, so considered fairly representative of substance users. It was noted that only 28 had first sought help from a General Practitioner, so that practices were not an appropriate route for engaging participants.

Surrey Social Services 3 considered that the process of involving people who misuse substances was more likely to succeed and to be sustainable if it was user-led. It was decided to hold a conference from which to establish an ongoing group. Finance was identified. A former service user now working for a local service was paid to organise and chair the conference. It was recognised that this was not ideal, and did prove to be a problem with conflict of interest, but "It broke the log-jam and moved the process forward."

The principles for the conference were:

  • Attractive surroundings and good facilities
  • Reimbursement of travel costs
  • Limited presence/involvement of professionals
  • Advertised through service and in local press.

Service users worked in small groups to express their views. There was support for an ongoing group, and a steering group of volunteers was given a grant to cover administration costs.
A Users Forum was set up. Interest was sustained by a publicity programme, newsletter and local workshops.

It was found to be easiest to attract interest from users/ex-users of residential facilities, but to avoid an imbalance, and to avoid a group aligned with any particular service provider, effort was made to include :

  • people who 'failed' in treatment
  • people who had addressed their problem on their own
  • people whose treatment had taken place within primary care
  • people who were supported by voluntary agencies, housing associations etc.
  • carers

The high drop out and relapse rate limited sustained involvement and made the maintenance of a bank of interested people crucial. Initial problems included a lack of clarity and vague expectations of the group on the part of agencies.. These were overcome by establishing a detailed contract with Social Services which set down concrete tasks and objectives, and these were then monitored.

References

  1. Tackling Drugs Together 1995
  2. Jones M et al 'Asking around: the theory and practice of user consultation' Drug Link March/April 1998 p14-17 report from apa 67-69 Cowcross Street London EC1M 6BP
  3. Surrey Alcohol and Drug Service Users' Forum 1995 Who Knows Best? Developing User Involvement in Substance Misuse Services Time is Right Publications Surrey

    4. » " This booklet outlines the process undertaken in Surrey to generate service user involvement in the alcohol and drugs field. It outlines the problems encountered not only in setting up a user consultation facility- but in ensuring its ongoing effectiveness. It is not a guide on 'how to get it right', but rather an honest description of the struggles we went through and the innovative solutions we developed."

Other resources

Task Force to Review Services to Drug Misusers: Report of an Independent Review of Drug treatment Services in England DoH 1996
» Chapter on 'meeting service users' needs'

Engaging with people who use primary and community health services

The challenge is the number and diversity of people who have varying amounts of contact with services.

Research shows that patients prioritise different aspects of primary care services to service providers. 1

The issues of concern to service users are:

  • The quality of relationships with staff - good communication, being treated as a person
  • Good information - to reduce anxiety, to inform choices and decisions, promoting a feeling of personal control
  • The effectiveness of care and treatment

Engaging more effectively

Combining a number of ways of allowing patients to participate can be effective but relatively inexpensive.

These might include:

  • Advertising in the practice population that feedback is welcomed, explaining how it will be used to influence service delivery, providing comment forms and boxes, and feeding back action taken
  • Setting up 'quality action groups' of individual patients and representatives of community groups (See Quality Action Groups)
  • Members of such groups can carry out observations, such as how patients are dealt with at reception, and feed this back into staff training (See Observation & 'Mystery shoppers' )
  • Holding a regular 'patients' forum'
The Department of Health is funding research 'to increase understanding about ways of involving the general public in decisions about individual treatment, health services and health policy'. It is anticipated that findings will be disseminated by the end of 2001.

Sarah Bruce, Research Associate, Graduate School of Social and Political Studies, University of Edinburgh

 

References

  1. McIver S 1993 Obtaining the views of users of primary and community health care services King's Fund

Other Resources

National Primary Care Research and Development Centre www.npcrdc.man.ac.uk/
» Produce a newsletter

Working for Health: Primary Care Groups and the Community Primary Care Development Team University of Hull
» Report from 1999 conference

 

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