Improving support for infants with disabilities and their families
Here is the book's Introduction. The link to the PDF is at the end.
‘This essay will suggest a new approach to early childhood intervention services to resolve particular problems that commonly arise in the way the services are presently delivered in many countries. In my view, this new approach represents a significant reconfiguration of early childhood intervention services that is necessary now to help parent-child attachment, afford proper respect to infants with disabilities and their families and protect and nurture the quality of life of children and families.
‘The impetus for this essay comes from my concern that early childhood intervention services can perpetuate two prevailing inappropriate assumptions. The first is that disabled infants can be treated very differently from typically developing infants with insufficient regard to their bond with their parents and to the quality of their childhood. The second is that parents and other close family members have to accept the inevitability of long-term stress, strain and exhaustion – often to the point that marital relationships falter, family members suffer physical and/or psychological illness and even that the family falls apart.
‘The reconfiguration I am suggesting here for early childhood intervention services is focused on infants who have a multifaceted condition – my preferred term for ‘multiple disabilities’. In my experience it is this group of disabled infants that most clearly shows the need for a new approach. This is because they can arrive with a bewildering mix of disabilities, often have extended and difficult times in hospital before they go home and might then receive fragmented and disorganised interventions for their various needs. Meeting the on-going needs for treatment and care of these children can make massive demands on their families.
‘There is no pretence here, though, that how any family adapts depends solely on the nature or severity of the infant’s condition. But if we can get early childhood intervention right for infants with a multifaceted condition there will surely be benefits for all infants with a disability and their families.
‘My suggested new approach for early childhood intervention services has four major elements. They are listed below and then briefly described in anticipation of longer accounts in Chapter 5. The four elements are:
1. Reframing aims and ambitions of early childhood intervention services
2. Offering families of babies with disabilities a primary interventionist as the first approach
3. Fitting therapy and education programmes into natural activities of living and learning as far as appropriate
4. Helping families find a daily balance of higher-energy quality time and lower-energy quality time
‘Reframing aims and ambitions of early childhood intervention services
The aims and ambitions of early childhood intervention services for infants with a multifaceted condition can be usefully reframed by moving from the present predominant focus on the infant’s development and learning to a dual outcome more respectful of infant and family and of their quality of life. In this new approach, success is perceived on a continuum and can be measured by the following:
1. Parents are gradually recovering self-esteem and confidence in their competence as parents and starting to feel they are again masters of their own ship. The family feels it has some quality of life and is moving towards a new version of their normal family life.
2. The child is settled in a nursery or first school. They have optimal opportunities for development and learning in natural situations at home, in the community as well as in the nursery or school.
‘Offering families of babies with disabilities a primary interventionist as the first approach
In the primary interventionist model within the Team Around the Child (TAC) approach, a single practitioner from the infant’s TAC works closely with the infant and family. This is offered as the first support for new families and then the preferred model of support for particular infants and families in particular situations.
‘Fitting therapy and education programmes into natural activities of living and learning
Therapy and education programmes and goals are fitted as far as appropriate into the infant’s natural daily activities of living and learning – mealtimes, dressing, changing, playing, etc. This takes away the requirement for infant and parents to do ‘therapy sessions’ in which parents must try to shift from parent mode to practitioner mode.
‘Helping families find a daily balance of higher-energy quality time and lower-energy quality time
As part of a considerate response to the stress, strain and exhaustion of infant and parents, practitioners support families in giving each day a balance between higher-energy quality time and lower-energy quality time. The former is for the natural activities of living and learning and the latter is for resting or for infant and parents just to enjoy being with each other and learning about each other – just ‘being’.
‘The Team Around the Child (TAC) approach has been widely adopted in early childhood intervention services for infants who have disabilities. This approach uses close collaborative teamwork across professional disciplines and agency borders to support babies and young children who have a multifaceted condition. The suggested reconfiguration of early childhood intervention services in this essay maintains the focus on infants with a multifaceted condition and their families and is built around a strengthened TAC approach. I shall use ‘TAC’ both for the TAC approach and for an infant’s individualised TAC team.
‘In writing the essay I have in mind people in countries, regions, cities or services who:
- are constructing their first early childhood intervention service
- are considering adopting the TAC approach for their existing early childhood intervention service
- are already using the TAC approach and want to consider now to what extent their service helps parent-infant attachment, fully respects infants and actively promotes quality of family life
‘In using the term ‘parent-infant attachment’ in the essay, I acknowledge the bond can be between the infant and mother or father or another primary care giver. I am not suggesting that the infant can attach to only one person amongst their family and carers or that it can only happen at a particular time in babyhood.
‘While having in mind infants with a multifaceted condition, which can comprise some combination of physical, intellectual, sensory and other formal or informal diagnoses, I shall also refer to typically developing infants and draw comparisons between the treatment of both groups of children. An infant with a multifaceted condition can also have serious illness and/or limited life expectancy – all with implications for bonding, for respect afforded to the infant and for the family’s quality of life. My essay is intended to be relevant to support for this wider group of infants and families.
‘I sometimes refer to ‘therapy’ in this essay as shorthand to include therapy, education and play interventions to support an infant’s development and learning.
‘Because my suggested reconfiguration of early childhood intervention services is firmly based in the TAC approach and because not everyone is familiar with it, Chapter 2 offers an account of the evolution of its philosophy, principles and practice. This shows how TAC had its beginnings in the innovative work of a small independent charity called One Hundred Hours that worked with families in the UK in the 1990s. Chapters 3 and 4 present TAC in detail as a systems approach to early childhood intervention. Chapters 5 and 6 describe the suggested reconfiguration of early childhood intervention services and Chapter 7 offers ideas for moving forward. On page 56 in Chapter 6 is a diagrammatic representation of the reconfiguration. The Appendix has an account of a One Hundred Hours keyworker supporting a family during the first few weeks of a helping relationship that lasted several years.’
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