Early Support Developmental Journal for Babies and Children with Visual Impairment

presented on Friday 7 December 2007

Why have an Early Intervention Programme for children with VI?

Alison Salt and Naomi Dale

"There are events in your life that you'll remember for ever
... being told that you have a child with a disability will definitely be one of them.
You have to live with that for the rest of your life."

Parents fear their child will experience:

• darkness, emptiness
• helplessness
• isolation

Be:

1. vulnerable, defenceless
2. dependent on others

Messages from Parent focus group

"... it was scary, just 'something's wrong' and then left on your own for a couple of months"

"difficult to accept what has happened ... you feel you are fighting by yourself, no-one there to support"

RNIB survey (1996) Taking the time

• Always traumatic
• Some parents had more positive experience than others

More traumatic:

• Not listening to parents' first worries
• Long wait for referrals for first tests
• lack of information in the early stages
• Not knowing where to go for help or information
• Difficulty in getting information about the condition
• Lack of written information about the eye condition at the time of diagnosis

Mesages from Parent focus group

"...who do I turn to?"

"...to support you so you're not on your own..."

Presence of visual problem may make parents:

• less confident about their ability to help their baby or young children learn new things
• less confident about doing what they would normally do with young children/siblings

The focus groups highlighted

• the immense emotional needs of parents at the time of diagnosis
• early identification and early support for parents folowing diagnosis is essential

Parents need support and help

• to know how to interact with their baby
• to assist their child to learn and reach their full potential

Visual impairment leads to developmental challenges in all areas of development.
Findings from practice and research at the Developmental Vision Clinic

• Early movement and mobility, eg; motivation to explore and move, using hands, learning to walk independently
• Learning about the world, eg; understanding sound, object concepts, relationships and properties
• Communication and language, eg; learning about daily activities, making links between words and objects/actions
• Social understanding, eg; learning about others, joint attention/shared understandings, relationships

Developmental Vision Team

Multisiciplinary team
Development and vision of children with VI 0-5+ years

Salt and Dale - clinical leads
Great Ormond Street Hospital NHS Trust, UCL Institute of Child Health

30 years

• clinical work and research
• designing, developing and evaluating materials, tools and programmes
• to promote early development and vision for babies and young children with VI and their families

Children with documented normal progress during the first year

Retrospective database study

Subjects - 102

• all visual disorders
• all degrees of VI

Developmental outcome
Reynell Zinkin Scales for VI children
Cass, McConachie and Sonksen 1994

Visual level

Absent Form vision
Profound VI (PVI):
No visual awareness, or awareness of light or of objects that reflect light only

Present Form vision
Severe VI (SVI)
Awareness of a 12.5 cm coloured ball spinning at a distance of 25-30 cms, or better

30% of Profound Visual Impairment has developmental setback from 18 months.

Prevalence of 'setback' - 'uncomplicated' visual disorders

N=69

Whole sample 15 (22%)

PVI 9 (33%) (PVI v SVI p<0.001)
PVI-SVI 5 (100%)
SVI 1 (3%)
Dale and Sonksen 2002

Features of 'setback'

Impairments in

• social interaction
• communication and language
• play and behaviour

Severe/profound VI from birth

Developmental Emergency!

Need

• appropriate early developmental guidance and promotion, including vision
• intervention from the earliest days of infancy
• specialist local support with parents and key workers working together

Messages from parent focus groups

"It is important to know what the next stage is ... how long it will take him to achieve it."

"... have some guidelines as to ... the order of development, to know the age and ... should we work toward the next goal"

"Support from professionals is vital to break it down so that it does not feel too much and to explain why some things are so important."

Government policy context 'Early Support'

"The DfES has funded Early Support to achieve better co-ordinated family-focused services for babies and young disabled children and their families... All chidren's centres are expected to use these approaches and materials, including the Early Support Famly Pack, Professional Guidance and the Service Audit Tool."

Better Information for Families

Developmental Journal for Children with Visual Impairment
Developmental Vision Team

Funded by Department for Education and Skills (DfES, UK)

A Developmental Framework for babies and young chldren (0-36 months) with severe and profound visual impairment.

• to be held by families
• used jointly by parents and professionals
• supporting partnership working
• underpinned by a scientific developmental framework for VI

Aims

• to support parental understanding of their child's development and progress
• to identify the small steps underpinning learning
  - stages of readiness
  - appropriate goals
  - sequential learning
• to develop a shared language and understanding of development (parents and professionals)
• to provide a common framework for understanding the early development of children with a visual impairment
• to highlight vulnerable areas that may need further support

2-year process of development beginning with a review of materials currently being used in the Developmental Vision Team UK and elsewhere.

Consultation with a range of professionals

• Three specialist teacher focus groups
• Four national consultation events involving teachers and parents
• Professionals accompanying families in clinics
• Professionals supporting families with materials at home
• Other professionals

Discussion with over 40 families

• Three parent focus groups
• Four national consultation events involving parents
• Use of draft materials with families

Using the Journal

The materials:

• are designed to be used by families, or to be family-led
• in partnership with professional who may be supporting the child

Developmental Journal - for professionals

The Developmental Journal complements and supports other forms of assistance by professionals, eg; formal developmental or visual assessments.

NB it is not a standardised checklist or assessment tool.

A Parent's view of using the Developmental Journal

"The Developmental Journal was introduced at a point when we felt very low - had been devastated and overwhelmed by the diagnosis"

"Count not see how my son could possibly learn and develop in the same way as his big brother"

"the developmental journal is a fantastic idea - it is a great tool that has boosted confidence in my son't ability to learn as well as my ability to do the best for him as a mother."

"Support from professional is vital to break it down so that it does not feel too much and to explain why some things are so important. Regular support is needed."

Feedback from parents

• Record of progress - focus on achievement - demonstrates child's ability to learn
• Information about development - in bite-size chunks leading to greater parental understanding of developmental steps
• Reduces anxiety and restores confidence - shows ordinary parenting skills are all they need
• Gives practical ideas, eg; clearly linked or signposted from developmental goals
• Forms the basis for discussion and sharing - parents say they feel a greater sense of control and that their views are valued
• Encourages a shared language with professionals
• Helps develop new skills in interacting / playing with their child and strengthens emotional bonding
• Promotes understanding of play as a tool for learning

Advisory group of health, education and voluntary sector

John Ford and Elizabeth Andrews, DfES
Eileen Boothroys, Sense
Julie Jennings, RNIB
Christine Ennals, Family Support Specialist Moorfields Hospital
Diana Wingfield, Head of LEA Service Essex, ESP Pathfinder
Sue Lewis, HI monitoring protocol, Ewing Foundation
Sue Buckley, Downs Syndrome Research Foundation
Patricia Sonksen, Consultant Paediatrician (retired director Developmental Vision Team)