A service supported by Scope

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Going the extra mile!
A service supported by Scope
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Aims

• To provide you with insight and an understanding
  of parents emotional journey in response to their
  childs disability
• To uncover ways of empathetically working in
  partnership with parents
• To support you as professionals in a sometimes
  difficult task

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AN ORDINARY LIFEIN AN EXTRODINARY
WORLDDVD N.E. LINCOLNSHIRE FACE2FACE
SERVICECOMPOSERJACQUI WOODREGIONAL
DEVELOPMENT WORKER face2facescope
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Parents are part of the solution not the problem!

• Face2face is a unique one to one parenting
  befriending service offering emotional support to
  parents discovering their child has a disability.
• The service is delivered by trained parent
  volunteers who are supported by professionals
  working within a structured quality scheme
• The value of sharing experiences and finding
  solutions

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Right From The Start

• The right support from professionals can
  facilitate the process of adaptation

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• RIGHT FROM THE START
• Parents have a right to expect
• A service provided by professionals who have
  training in communication skills, sharing the
  news and disability equality
• A service that takes account of their cultural
  background and that is able to provide
  information and support in their first language
• To be treated with respect
• An approach and language that values their child
• Privacy and a suitable environment when the news
  is shared
• To have their concerns respected and responded
  to, particularly if they are the first to notice
  their child has additional needs
• Findings about their child shared sensitively and
  honestly
• Time to reflect on the news, ask questions and
  check understanding of the information given
• Early follow-up support, ideally from and
  identified keyworker
• Support to share the news with other family
  members and friends
• Written information on
• - Their childs condition
• - Statutory and voluntary services
• - Practical and emotional support
• An opportunity to seek other professional
  opinions if they so wish

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Uncle Tom Cobley n all

• Soon after his first birthday the professionals
  began to mass on the horizon
• The family had no idea at that time how many
  different people they would have to learn to deal
  with
• Each professional had a different take on the
  situation

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Doctors
Therapy
Portage
Social Services
Diana Trust
Special Education
All the familys other needs
Scope
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Slicing the cake

• When professionals get together they are more
  than willing to discuss what they have to offer a
  child and family
• There are set responses that they are comfortable
  with re-jigging
• They have a cake and will cut it any way they can

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Parent expectations Professional advice

• Expectations
• That Tom would go to his local primary school
• That all adaptations would be made
• That the school would welcome him

• Advice
• OT reported the cost of adaptations
• Scope reported that Tom needed a mainstream
  education
• The Head teacher reported that he could not see
  that it was feasible

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Exploring the Principles

• Think about and challenge our attitudes towards
  parents, carers, disabled children and adults
• Understand how our attitudes influence our
  practice and how we communicate
• Recognise that how the news is shared may have an
  impact on how the parents bond with and respond
  to their child
• Be aware that how the news is shared may
  influence the future relationships that parents
  will have with professionals

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Task of adjustment

• Acknowledgement facing up to your childs
  disability and coming to terms with it
• Survival to cope
• Emergence To build a new identity

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Emotional Roller Coaster!
loss
Joy
Why us?
Shock
Longing
Joy
Affection
More answers
So alone
Pride
Disbelief
Guilt
My fault
Hopelessness
Attachment
Jealous
LOVE
Confusion
Pain
Anger
Pain
Relief
bitterness
Information
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Face2faceParents Supporting Parents
www.face2facenetwork.org.uk
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• About the face2face service
• Why the service is needed
• The solution
• Impact
• Policy

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Do no harm

• Help parents identify and manage problems
• Enable them, including problem anticipation
• Enable the well being and development of children
• Facilitate social support and community
  development
• Enable service support
• Compensate where necessary

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• Holistic and skilled support for families of
  children with disabilities is still very limited
  and Face2Face has been developed to fill the
  obvious and important gaps in services It is a
  highly appropriate and well designed service that
  includes many of the elements that research tells
  us are effective. It has a clear and effective
  management system, that enables the careful
  selection of parents, well developed training and
  regular supervision, all directed towards the
  development of respectful empathic partnerships
  with families, and an approach that is family
  centred and strengths-based
• Hilton Davies
• Professor of Child Health Psychology
• Kings College London, South London and Maudsley
  NHS Trust

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The Befriending Service

• Objectives
• To ensure parents are supported
• To communicate long term benefits
• To inform and educate
• To empower

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Impact

• Parents their child are respected valued
• Parents recognise that what they are feeling
  is normal
• Parents become less isolated
• Parents become empowered to move on with their
  lives
• Parents are more optimistic about their child
  their familys future
• Parents are better able to communicate with
  professionals
• Parents recognise their skills

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Benefits of a Parent Led Service
The expert is always the person on the next
page
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Online and telephone Befriending

• Gap provision
• Choice
• Busy lives

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Partners, Practice and Policy

• Every Disabled Child Matters
• Together from the start
• National Framework for Children Standard 8
• Aiming High for Disabled Children
• No Time for us
• Growing together Drifting Apart
• Ordinary Lives Disabled Children and their
  Families
• Voluntary organisations/ Statutory Services
• Childrens Centres
• National Befriending and Mentoring Network

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Supporting parents of disabled children
A service supported by Scope
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Sleep

• 86 of children with additional needs have sleep
  difficulties
• Parents shared the devastating impact sleep
  deprivation has on the whole family
• Working in partnership with Sleep Scotland
• Part of York Universitys research project

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Sleep Service

• Referral received
• Contact with family made
• Waiting list
• First appointment sleep history is taken away
  from the home. Sleep diaries given. SMART
  target set.
• Second appointment home visit. Meet the child
  and assess the bedroom

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Sleep Service contd

• Third appointment sleep plan agreed
• Contact maintained as progress is reviewed.

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Sleep Workshop Training

• Aimed at professionals who may be asked for
  advice around sleep
• Aimed at parents who need information about sleep
• A 4 hour course
• Covers the basics around sleep hygiene good
  bedtime routines, sleep diaries, why a child may
  not be sleeping, the bedroom environment, night
  awakenings
• Puts parents in touch with other parents and
  reduces their isolation.
• Share information about resources
• Constantly under development

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A service supported by Scope
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Contact a Family Survey

• 76 depression/stress
• 72 tiredness/lack of sleep
• 51 financial difficulties

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Strengthening Families Aim

• To explore how parents adapt to having a disabled
  child and to assist supporters in developing
  skills to work empathically with parents.

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The Training

• For workers who come into contact with families
  where a child has a disability
• Provides the basic skills to work empathically
  with families
• To develop positive relationships with families
• To take time to reflect on the issues that
  families may be facing
• A flexible approach to training is used.
• Follows same ethos as early support Family
  Partnership Model
• A one day training course nationwide

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Working in partnership

• Relate currently training their counsellors
• One Plus One
• Sunfield School
• Sibs
• Fathers Direct
• Professor Hilton Davis
• Face 2 Face groups across the country
• Women and Theatre

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Stronger

• Brings the parents voice into the training room
• A piece of drama around the issues
• Interviews with parents
• Can be used as training in school

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Websites

• http//www.timetogetequal.org.uk/FamilySurvey
• http//www.transitionsupportprogramme.org.uk/

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face2face
www.face2facenetwork.org.uk