University of Edinburgh
 

Early Diagnosis: Supporting Parents to Support their Child

Presented on Thursday 9 November 2006

The Early Support an introduction to the programme and materials

Mary Kean

The Early Support Programme

  • is the national, central Government mechanism for achieving better coordinated, family-focused services for young disabled children and their families across England.
  • is integral to the re-structuring of children’s services in response to Every child matters and associated new assessment, information and inspection frameworks for children’s services.
  • facilitates the achievement of objectives set by a broad range of Government initiatives for young disabled children and their families.
  • is a mainstream programme, facilitating development across both universal and specialist services
  • supports a diverse target population of families and children
  • involves a wide range of professionals across early years, childcare, health, education and social services
  • facilitates the development of better multi-agency support for a particular population, at strategic and operational level.

The aim

Core Standard 8
Children and young people who are disabled or have complex health needs receive co-ordinated, high quality child and family-centred services which are based on assessed needs, which promote social inclusion and, where possible,enable them and their families to live ordinary lives.

Early Support implements Together from the Start
"Together from the Start- Practical guidance for professionals working with disabled children (birth to third birthday) and their families"
Department for Education and Skills & Department of Health
May 2003

The Early Support materials

  • Early Support Information for parents booklets
  • Early Support Family pack
  • Early Support Professional guidance
  • Early Support Service audit tool
  • Early Support Monitoring protocol materials

The Early Support materials are practical resources to drive and support the process of multi-agency service development at local level.

Information for parents booklets

  • Provide first step information for families beginning to find out about their child’s situation
  • Pass on advice and tips from other parents
  • Identify sources of information and support that may be particularly relevant
  • Were developed in partnership with families who have ‘been there before’.

Early Support Family pack

  • Early Support Family file
    Standard, family-held materials that help with the coordination of service delivery, where there are multiple contacts

  • Background information file
    Standard information about services that are available and how they operate

Family file- better exchange of information

Prevents families having to repeat their story to every new professional they meet

  • keeping track of multiple contacts

Family Service Plan

  • Enables all those working on a regular basis with a family to review how things are going and to agree joint, shared priorities.
  • Prevents professionals working in a vacuum.

What do Family Service Plans offer?

  • They put the families priorities at the top of the agenda and ensure that professionals take account of these
  • They ensure the ‘voice of the family’ is heard, is valued and is central in helping to define services

Early Support Professional guidance

  • Practical guidance for professionals implementing Together from the Start at local level
  • Aids understanding of how the Early Support materials facilitate partnership working with families and drive the development of multi-agency service provision at local level
  • Includes case study material from 2002-2003

Early Support Service audit tool

  • Supports multi-agency review of existing service provision
  • Provides a shared framework against which to plan and implement service improvement

Early Support Monitoring protocol for deaf babies and children

  • Standard, family-held developmental profile for deaf babies and children
  • Used by families and the professionals working with them to track development
  • Improves everyone’s understanding of the developmental processes involved
  • Provides a common framework of reference

How was the protocol devised?

  • 2 year process of development
  • Materials from the beginning were explored with families; joint training events held with families and practitioners; feedback from families and practitioners informed each draft

What families said they wanted to know

  • Where is my child?
  • Are the hearing aids making a difference?
  • What will he/she do next?
  • How can I help?
  • Is everything else alright?

The principal purpose of the monitoring protocol is to provide families with:

  • A sense of growth and development
  • Confidence in their children’s ability to learn
  • Confidence in their ability to help their child
  • Validate the diversity of families

Challenges

  • Not so much about devising the benchmark or monitoring mechanism, rather how it should be used and how families should be supported to use it in the way they preferred

  • ‘Both practitioners and families are extremely positive…in talking about its benefits practitioners cite first how it enables them to do their job, whilst families talk about how it helps them to be more involved, understand their child, gives them confidence’
    Hunt, R. 2006

Enabling parent/carer contributions

  • The MP centres on describing what babies and children can do – possibly and definitely
  • Families choose the level of involvement
  • Their views are listened to and respected and will determine what is in the protocol
  • Professionals add to the observations but do not ‘challenge’ them

Monitoring Protocol - contents

  • Baby stages B1-11
  • Communication B1-11
  • Attending, listening and vocalisation B1-11
  • Social-emotional development B1-11
  • Other developmental milestones B1-11
  • Development of play B1-11
  • Summary records
  • Glossary
  • Development Profile

Timescale for development – B stages

Stage Age of child/timescale after identification
B1 0-2 months (approx)
B2 2-4 months (approx)
B3 4-6 months (approx)
B4 6-9 months (approx)
B5 9-12 months (approx)
B6 12-15 months (approx)
B7 15-18 months (approx)
B8 18-21months (approx)
B9 21-24months (approx)
B10  
B11  

Developmental Profiles – attending, listening and vocalisation: B3

B3 developmental chart

Developmental profile for attending, listening and vocalisation

developmenal profile chart

'Fridge card'

fridge card

Introducing the MP to families

  • How?
  • When?
  • Families have been some of the strongest advocates
  • Number of projects looking at this issue

Note: It’s all in ‘the telling’

Using the monitoring protocol

  • Families decide how the protocol will be used
  • Families can complete all or some of the protocol on an ongoing basis
  • Families may ask professionals or give them permission to complete it on their behalf, but with them
  • Professionals can fill it in if families have indicated this is what they want to happen

Note: It is not done to babies with or without the support of professionals working with them

Level 2 materials

  • What if the child is not moving forward?
  • Some families want further reassurance re key areas at risk because of early childhood deafness
  • Level 2 materials have been designed to allow for more detailed focus on aspects of communication

Note: Most deaf children will move smoothly through the protocol – some do not

LEVEL 2 MATERIALS

  • Designed to look in detail at communication – how a child ‘learns to mean’
  • Explains how these fit in with Level 1
  • Stress a holistic approach oral/sign
  • Look in detail at development of pragmatics, early words/signs, early grammar, interaction and attending, listening and vocalisation
  • Level 2 checks interconnect with MP at the end of stages B5, B8 and B11

Using the Monitoring Protocol – challenges for practitioners

  • NHSP
  • Family diversity
  • Informed choice
  • Working in partnership
  • Equal opportunities
  • Multi-agency working

How does the MP support practitioners work with families?

  • Provides a scaffold for observations
  • Gives details of child development in the early stages
  • Everything is ‘together’
  • Common currency for discussion with other professionals

Challenges:

  • Who contributes to the MP?
  • Who is it shared with?
  • Finding the time
  • How often is it completed?
  • Is there a parallel copy?
  • Literacy vs access

Note: Acted as scribe, family made recordings of exemplars, another prof has made a video recording of an exemplar

Families and the MP

  • Celebrates achievement - ‘can dos’
  • Lets families know we value their views
  • Increased contributions from families
  • Observations were more focused
  • Families lead on more questions

“It will be valuable to use when he goes to playgroup, to make them aware of how much he can do”

Benefits

  • Empowering
  • Reassuring
  • Highlights area where they are concerns
  • Develops observational skills
  • Informs IEP targets
  • Fridge cards

Note: Gives confidence to parents in what they are doing, feel valued and listened to

  • www.earlysupport.org.uk
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