Joined-up support for parents and other family members
The wide range of family needs
I know from my own experience as a multiagency keyworker that parents and perhaps grandparents, during all of the early years, might be seeking any combination of the following elements of support when they encounter a new practitioner or a new service. It is a long list that could never be complete:
To find out what is wrong with the child.
To find out why this happened.
To find out if there is a cure or a medical treatment.
To find out the implications for any siblings.
To find out if it is safe to have more children.
To find out what the diagnosis means for the child‘s health, survival, wellbeing, happiness, education, adult life.
To acquire an understanding of the condition.
To find out what can be done to help the child.
To find out what services and supports are available.
To acquire necessary skills to help in the child‘s treatment, care, play, development and learning.
To get practical help from practitioners in the child‘s treatment, care, play, development and learning.
To find words to use to explain the condition to strangers, neighbours, friends and relatives.
To get support in helping partner, grandparents, siblings and friends understand the condition.
To get support in encouraging and facilitating partner, relatives and friends to offer practical help.
To get help in balancing the needs of the child with the needs of partner and siblings.
To get support in maintaining the relationship with a partner.
To get relevant services and support so that employment can be continued.
To get help in remedying an immediate problem or cause of stress such as disturbed nights, the child‘s feeding, the child‘s constant crying or other challenging behaviour.
To get such support as ‗baby-sitting‘, childcare or short breaks to help in coping with stressful and difficult situations.
To have someone to discuss issues with and to help parents come to informed decisions.
To have someone to be a listening ear and a shoulder to cry on.
To have counselling to help sort out emotions and to develop coping strategies.
To have help with getting benefits, applying for grants, securing money for items of equipment, managing the family budget.
To get more appropriate housing by moving house, getting adaptations, equipment, etc.
To get practical help with household tasks which might otherwise be put aside.
To get opportunities for family members to spend valuable time apart from each other on rewarding activity – as happens naturally in most families.
To get help in taking the child to such local facilities as mother and toddler groups, playgroups, nurseries, swimming pool, football matches, etc.
To get help in keeping family life as normal as possible in relation to outings, socialising, leisure activities, holidays, etc.
To be helped to make informed choices about the shape of the whole package of support so that it is a coherent whole which does not make family life impossible and which enhances aspirations of all family members.
To have an adviser and advocate to help remove barriers to the parent‘s aspirations.
The list is long and wide-ranging because the challenges in caring for a baby or infant with a multifaceted condition can affect every aspect of family life: finances, housing, leisure, employment, relationships, emotions, beliefs, etc. A parent who has all or many of the needs listed above and who might or might not have articulated them into clear ideas and wishes, can easily become frustrated and angry when services and practitioners are found to have only a narrow remit and when no local services are found that are designed to meet their particular needs.
Many practitioners who perceive needs which are beyond their own job description will do as much as they can to help. This might mean they put extra hours in and it might mean they have to distort the records they submit to their managers about how they have spent their time. Such practitioners are often described by parents as saints and life-savers. This sort of under-the-counter support can help keep desperate parents going and help vulnerable families stay together. A danger is that some practitioners will get involved beyond their level of competence and training. Some practitioners will suffer burn out. Busy practitioners will have proper support in effective joined-up child and family support systems.
Close collaborative teamwork
I have met many parents who say they have had more stress and anxiety because of fragmented and disorganised support than they have ever had from their child's condition. A very large part of the answer to this is to invite the practitioners helping the child to come together into a team around the child. A team is cohesive with shared aims and is mutually supportive. It is more effective in early support than a group of disparate practitioners each doing their own thing.
The team around the child approach is child and family-centred is offered as a radical contribution to an effective early support system which will empower families and join services together. At its core is each family‘s team around the child (TAC) which is defined as an individualised, evolving and collaborative team of the few practitioners who see the child and family on a regular basis to provide practical support for the baby or infant's acquisition of understanding and skills. There are three essential features of the approach:
Each TAC team has a multiagency and multidisciplinary membership bringing together the practitioners who support the child and family regardless of which agency they work for. This can include health, education, social services and the voluntary and private sectors
Parents are empowered by having a full place in their child's team and are supported in taking part to the extent that suits them at the time
Each child's team has facilitator who probably also functions as the multiagency keyworker for the child and family with a very clearly defined and limited role.
The TAC approach is designed to facilitate sharing of detailed observations and information about the child and family while providing a safe forum for the discussion of all pertinent issues. The team meetings agree successive action plans for seamless support to the child and family and regularly review progress. This approach two major needs: the first is the need for parents of babies and young children to be fully involved in all decisions about support for their child and family; the second is the child and family‘s need for effective joined-up support regardless of how many practitioners, services and agencies are involved.
Note: This team approach is fully described in this book.
The Multiagency keyworker
The word keyworker or key-worker has no single meaning and keyworking cannot be just one single activity. In fact keyworkers have different functions in different settings and even in one particular setting keyworking will probably be a mix of activities. The following headings cannot be used as hard-edged distinctions because the four activities inevitably merge together and overlap. However, the separate headings do suggest that keyworkers will need different training, resources and support in order to be competent in each of the functions:
Basic keyworking
Providing emotional support
Co-ordinating services
Being a child’s primary worker
Basic keyworking
This role includes: being the named person who the family call on when they do not know whom else to contact; helping the family get good information about their child’s condition, strengths and needs and about about all relevant services, resources, benefits, etc; helping the family to understand all information; signposting the family to all relevant support, helping open doors into those services and offering informal advocacy to help family get all relevant support without them having to battle for it.
Providing emotional support
All Keyworkers have a responsibility, as do other practitioners working closely with families, to develop a helping relationship with them. It is not possible to work closely with a family of a baby or infant who has significant challenges to development and learning until a helping relationship based on empathy, respect, honesty and trust has been established. Keyworkers must develop the skills to lay good foundations for this sort of relationship within the first one or two meetings with each new family.
In this way each Keyworker becomes a close ally to the family and is someone parents can talk to about their joys and fears, anxieties and aspirations. This relationship, in which the keyworker is a listening ear, can be a real asset to families and its value should not be underestimated. It is not always available. I have heard many parents complain they have never met a practitioner they could trust nor a practitioner who really tried to understand what life was like for them and their family.
When family members are in emotional turmoil or facing a particular crisis they might require a higher level of emotional support from a practitioner who has relevant skills and available time. Keyworkers who are experienced in working with families and who have learned basic counselling skills can provide this sort of emotional support if they have the necessary time and the necessary support for themselves. Family members who require formal counselling should be referred to relevant local services.
Coordination of services
The Keyworker with this role helps co-ordinate the service to the child and family to:
enable all practitioners to know who else is involved and what their involvement is
establish whether there is any unmet need or duplication of input
arrange for appointments, clinics, home visits, etc. to be rationalised as far as possible
ensure that the daily and weekly routines of education and therapy are in the best interests of the child and the family
enable services to provide collectively for the whole child and family.
Keyworkers of children who have a multifaceted condition cannot support a child and family on their own. The role requires a local well-organised early support system enabling them to work successfully.
Supporting the child's acquisition of understanding and skills
Experienced keyworkers will be at ease shifting their focus continually between the child, parents and other family members. An important part of the role will always be time with the child, closely involved with him or her in hands-on work and play. This Keyworker creates a holistic programme of motivating activity for the child's deveopment and learning, offered to the baby or young child as play activity or in activities of daily living. The role requires that other practitioners share their methods and learning goals with the eyworker so that he or she can integrate them together into a whole approach.
The team around each child has to work horizontally
Each indidualised team is a horizontal structure because the child’s practitioners are temporarily removed from the hierarchical relationships in their vertically organised employing agency. In effective early support, practitioners work with each other and with the parents as equals.
A vertical organisation can be defined as an agency of any size with a top-down, hierarchical management structure in which each and every employee can look up to the people who are more powerful than they are and down to the people who are less powerful and subject to their decisions and control. Vertical organisations are often presented diagrammatically as a pyramid in which each stratum has fewer people as the tip is approached. Horizontal structures on the other hand are characterised by people from two or more agencies collaborating with each other in a flat power landscape in which no one has automatic authority over the others. In vertical agencies, service users are typically positioned at the base of the power pyramid. Service users in genuinely horizontal agencies are naturally part of the collaborative team of people working together in a more or less status-free forum. This is the essential flattened power structure of multiagencyy teamwork.
Moving from the vertical to the horizonaal does not come easily to some practitioners. It is a big change in working practice and this should not be under-estimated. Practitioners at both grassroots and management levels might experience entirely valid nervousness, uncertainty and apprehension about entering a space which might not be properly organised, could compromise their professional standards, might increase their workload and expose them to dangers from which they are protected in their vertical organisation.
This obstacle to interagency collaboration around babies and infants with a multifaceted condition has to be respected and addressed in careful design of the horizontal structure with fastidious attention to maintaining high professional standards. Initial and on-going training and proper supervision are essential. Experience shows that practitioners are not going to become comfortable and competent in horizontal teamwork overnight just because a new system has been imposed. Here is a brief list of conditions necessary for supporting a practitioner operating within a local horizontal structure:
Local practitioners are involved at all stages in the development of the new interagency collaboration.
There is a clearly described multiagency early support system that is sufficiently logical and clear for each practitioner to see their part in it.
Each practitioner is involved in agreeing a refreshed contract and job description that confirms it is a radical change in how time is managed rather than additional work.
Practitioners are assured that horizontal teamwork is not going to ask them to do anything that their professional body would consider inappropriate.
There is an effective communication system to link workers within and across local agencies.
Each practitioner has supervision, oversight, support and evaluation.
Initial multidisciplinary in-service training for the horizontal structure is provided followed by opportunities for further learning and professional development. This opportunity to train alongside practitioners from other agencies is an excellent opportunity for them to get to know each other and develop working relationships.
Problems with the concept of paediatric therapy
The Western model of hospital-based paediatric therapy is entirely inappropriate for supporting a baby or infant’s development and learning. It is a hangover from last century’s medical approaches to 'early intervention'. An up-to-date reconfiguration of this therapy will bring great advantages to young children, their families and their practitioners. I acknowledge the good work that individual paediatric therapists do and I also acknowledge that many families would have received hardly any support if it weren’t for them. But a serious re-think is needed in the improvement of early child and family support.
In my understanding, paediatric (or pediatric) therapists have a dual role with babies and infants who have difficulty, delay or challenges to their development and learning.
Firstly, they support the acquisition of new understanding and skills in both children and parents. This comes under my heading of education and promotes communication, movement, cognition, dexterity, posture, etc.
Secondly, they offer essential medical interventions to do with swallowing, respiration, muscles, joints, and more. Following this thinking, the term paediatric therapy, is a misnomer since these practitioners are either supporting education or providing health treatment – neither of which needs to be called therapy. (The word ‘therapy’ unfortunately groups paediatric therapists together will all sorts of weird and wonderful therapies that parents will encounter on the internet.)
Obviously, it is going to be necessary for some babies and infants to attends hospital for health treatments from paediatric therapists, but children should not be brought into hospitals for education support. As it is, young children and their parents might have months or years of unnecessary regular visits to hospitals, centres and clinics for what is wrongly termed therapy. The negative aspects of this can be:
a continual drain on family time, energy, money and spirit
disruption of the child’s natural daily routines
additional and unnecessary stress and anxiety for child and parent
reduced opportunities for learning and for developing bonds of attachment in a calm and unhurried atmosphere at home
regular reinforcement of the medical idea of a problematic disability to be treated (if not cured)
loss of opportunities for inclusion in more natural baby and infant social/educational environments
To counter this, the education element is best supported in the family home and then in nurseries, kindergartens and first schools. This is inclusive practice in which the practitioner goes to where the child is.
Also it allows the paediatric therapists to collaborate closely in teamwork with parents and other practitioners supporting the child’s development and learning. The therapists (hopefully with a new name in new systems) have particular skills to offer, as do parents and the other practitioners. These will all be joined together in a whole-child approach in which, perhaps, the paediatric therapist will have to be less regularly involved because of time pressures and will act as a valued consultant to others in the team around the child. This collective competence keeps the child away from hospital as much as possible and enhances quality of life of child and family.