Changing tomorrow for today's disabled children and young

people and their families enabling them to embrace a more positive

future

ALL ABOUT ME COMMUNICATION PASSPORT

Five of the ten standards of the National Include Me TOO Charter of Rights for Disabled Children and Young People are supported through the Communication Passport are:

Standard 2 To be listened to and taken seriously Standard 5 To be included in decisions that affect our lives Standard 6 To be treated equally and respected for being

individual and unique Standard 8 To feel safe and be safe Standard 10 To help change and improve services

The development of the Communication Passport was supported through consultation with parents/carers and disabled children/young people, ensuring the end product was fit for purpose.

Eight consultation sessions were organized and facilitated the participantsincluded:47 Parents and Carers26 Disabled Young People 1 Parent Engagement Coordinator10 Special Schools staff these included, Headmistresses, Deputy Head, Teaching staff, School Nurses,Speech and Language Therapists, School Improvement Lead.

Consultations sessions delivered at:• The Jane Lane School (Walsall) – (4 – 18 year olds with moderate learning

disabilities attend the school )• GreenPark Special School (Wolverhampton) – (3 – 19 year olds with severe /

profound learning disabilities, many of whom have additional needs including physical disabilities, sensory impairment and autism attend the school).

• The Bridge School (Telford) – (5 – 19 year olds with severe / profound learning disabilities, many of whom have additional needs including physical disabilities, sensory impairment and autism attend the school).

• Include Me TOO Family Network – (Supports families with disabled children with a range of additional needs including severe / profound learning disabilities, many of whom have additional needs including physical disabilities, sensory impairment and autism)

Consultation with Parents/Carers (introduced concept of the Communication Passport, highlighting information they would find helpful)

• South Asian Group• Solihull CAMH• Parents views count• Birmingham Contact a Family• Include Me TOO• The Jane Lane School

Desktop ResearchCollating good practice examples currently used by professionals /organisation working with disabled children with learning disability and additional needs

Nineteen literature/guidance/templates were identified and taken into consideration in the drafting of the visual template, promoting good practice and informing the consultation.

Additionally fourteen resources were identified to support the development for Communication Passports.

‘Dignity is concerned with how people feel, think and behave in relation to the worth of value of themselves and others. To treat someone with dignity is to treat them as a being of worth,

in a way that is respectful of them as valued individuals.’ What does dignity means to people with learning disabilities? A panel of experts went on to deconstruct the term into several key themes, these were: • understanding my health • respect me • get to know me • having choices and making decisions • feeling safe. RCN, (2008)

Getting it right charter’ (Mencap) principals. The following principals would be supported through the Communication Passport proposed:

• make sure that hospital passports are available and used• listen to, respect and involve families and carers• provide information that is accessible for people with a

learning disability

Include Me TOO appreciate and value the use of Communication Passports and therefore felt it was necessary to share guidance that would be highlighted through the research and consultations regarding:

• How to develop Communication Passports• Key considerations that need to be taken into account• Guidance to illustrations, text, presentation, use of images etc...• Resources available to assist development of Communication Passports.• Highlight good practice guidance in regards to easy read for people with

learning disabilities.

Developing Communication Passports

Families are essential to the development of Passports. It is the family that has the most intimate knowledge of their child and overview of all

the services involved. It is this knowledge that sources the content of the Passport. The literature suggests that the support of families is crucial in

promoting the success of AAC

(Angelo 2000, Curry et al 2001). Therefore when developing Passports it is necessary to think about ways to engender the support and involvement of families. (It’s My Book Creating Ownership of a Communication Passport: Laura A Coakes, with Tikkus Little & Lynne Drysdale)

‘I wanted to increase the involvement of families. I hoped that by empowering them to create the Passport themselves,

they would value it more and feel free to update and make changes to them when they wanted/needed to. Thus

increasing their sense of ownership’

(Curry et al 2000)’. (It’s My Book Creating Ownership of a Communication Passport: Laura A Coakes, with Tikkus Little & Lynne Drysdale)

Themes that emerged:

All About MeMy Name is .......................................I like to be called ............................... Daily Routine

Themes that emerged:

Things you must know about me• Medical stuff• About me (brief)• When I’m ill or in pain

How I Communicate •How I express myself•My understanding•Sensory information•How I get on with people

Themes that emerged:

Things you need to know about me•My personal care needs (dressing/washing/toilet/sleeping)•Eating and drinking •Seating and mobility

Themes that emerged:

Things you should know about me• Important people in my life• School/college• Things I like• Things I don’t like• When I’m happy I ....• When I’m grumpy, angry or annoyed

Themes that emerged:

•Behaviour Support

•Epilepsy Support

•Growing Up - Transition

•Things to consider when planning my Discharge

•Advanced Care Plan

•Communication Passport Record of Updates and Reviews

Passports aim to support children with complex communication difficulties who cannot easily speak for themselves, by:

• presenting them positively as individuals, not as a set of ‘problems’ or disabilities• drawing together information from past and present, and from different contexts• describing the child’s most effective means of communication• presenting information in an attractive easy to understand way

(Listening to children: Stuart Aitken & Joyce Wilson, Sense Scotland)

Passports are a special way of sorting information. They don’t contain ALL the information about child only KEY information about day-to-day things. A Passport is not a list but a synthesis of information to help other people to help the child to ‘be the best he or she can be’.

Passports are especially important at times of transition, when new people come into the child’s life. They are also helpful when new or temporary staff or volunteers meet the child, helping them quickly to acquire key information.

(Listening to children: Stuart Aitken & Joyce Wilson, Sense Scotland)

Communication Passports, and related approaches such as communication dictionaries and personal passports, are not an intervention directed at the person with communication

needs. The process of gathering, sharing and making explicit information about the person and their communication acts as an intervention for staff, family members and the community.

(Communication and people with the most complex needs: What work and why this is essential: Mencap)

Key principals highlighted through the project and considered whilst producing the Communication Passport were

1.Information recorded in the Communication Passport needs to be presented in an accessible way that would support a person with no prior knowledge of the child’s needs in a simple, honest, attractive way. The information should be specific providing key details to engage with and support the child. 2.Communication Passports need to be developed in partnership with the child and parent/carer. 3.The Communication Passport should be in the form of a template that can be changed accordingly to each child’s needs and is owned by the child and family not the services.

4.The information included in the Communication Passport should not contain ALL the information regarding the child, the information provided is to help staff to provide appropriate support to the child in the best way possible, whilst also supporting their inclusion and dignity.5.The size of each section is to be no more than two A4 sides of paper. The Colour boarders for each section help to identify the different themes. 6.The design of the Communication Passport template was based on good practice guidelines from a number of sources and the consultation process i.e. text, illustrations, use of images, layout etc....

7. The Communication passport needs to be updated to be effective and staff and parents and carers need to receive training in how to complete and update the Communication Passport as well as utilising it as a key resource to support the child

8. The Communication Passport supports the key themes identified in ‘Dignity in health care for people with learning disabilities (Royal College of Nursing 2009).

9. The Communication Passport supports the principals of the ‘Getting it right charter‘ (Mencap)

10. The Communication Passport supports the United Convention Nations Rights of the Child Article 12, Article 13, Article 23, Article 24 and the National Include Me TOO Charter of Rights for Disabled Children and Young People ten standards

To ensure real engagement and culturally appropriate care is

the reality and experience of all disabled children/young people and their families; everyone has a responsibility to

understand the needs of the child and their family.