This essay concerns babies and pre-school children who have conditions that can present significant obstacles to their development and learning. A child might have a single condition (with a single diagnosis) or a multifaceted condition (with two or more diagnoses). The essay is intended for all people who care for or support these children as parents, family members, practitioners, managers and for academics.
I am avoiding using the words ‘disabled’ and ‘disability’ because I feel they are premature and discriminatory in such young children and can promote negative mind-sets in children and the adults around them. I also discount the term ‘developmental delay’ because this implies children will eventually catch up with their peers. For very many children this will not be so. I also am avoiding the phrase ‘early childhood intervention’ because it does not suggest equal partnership between families and practitioners. I prefer ‘early child and family support’ because it sounds less intrusive and authoritative and helps bring the work into the modern era.
The aim of the essay is to aid discussion about how to initiate or enhance effective integrated early child and family support in a city, region or country. ‘Effective’ is not an easy word to define because families and their situations, children and their conditions and successful approaches are all unique and conform to no universal standards. My working definition for an effective service is a service that comes when needed, addresses issues and concerns that are relevant to the child and family and leaves the family feeling they have received or are receiving, as far as practically possible, the support they needed and/or asked for.
‘Integrated’ is an easier word to define. Support around a child and family is integrated when the main people offering regular and practical support find ways to join their work together regardless of what their discipline is or which agency they work for. Team Around the Child (TAC) is one successful example of this multidisciplinary and multiagency integration. Integration at a higher level is also essential in building a TAC System for a city, region or country. In this, senior people from relevant departments and agencies find ways to join their work together to encourage, facilitate and support integrated teamwork around each child and family in their locality. This is described in Integration made possible: A practical manual for joint working.
In my view, the world is making very slow progress in the imperative to provide effective integrated early child and family support to the majority of families in the majority of countries. My negative assessment includes high economy, middle economy and low economy countries but I strongly believe all countries have something to offer in finding ways forward. Many children are left out of early support projects, often those who begin life under very disadvantageous circumstances. Included here are children in oppressed minorities, children in displaced populations and children of oppressed first nation peoples. Sadly, our best efforts to provide early child and family support in a city, region or country often fail to consider these children and their families.
This essay is not about reasons for this slow progress but, briefly, my reasons would include:
- Widespread prejudice about people with disabilities and lack of concern for them in the general population.
- A general lack of appreciation of the importance of the early years in every child’s life.
- A general failure to acknowledge the high impact these children can have on their families in terms of physical health, mental health and economy.
The essay is suggesting we have not yet found successful ways to promote effective integrated early child and family support. Millions of children and families, now and in the future, will have to remain unsupported if we cannot improve what we are doing and move at a much faster rate. I am going to describe three approaches, the first two of which I have extensive experience of. The third can be seen as a synthesis of elements of the first two with some new thinking. These are:
- A top-down approach in the typical vertically organised hierarchies
- The approach Interconnections uses internationally to promote TAC
- Empowerment of people at the grassroots to effect change
Part 1: Problems with the top-down approach in typical vertically organised hierarchies
It is always tempting to believe that if we influence policies at the top of local and national governments and at the top of public services and non-government organisations (NGOs), then new policies and improved practice will inevitably filter down to the children and families who need early child and family support. There is some logic in the top-down approach because the people at the top can establish policies, have authority over people lower down in the hierarchies and can allocate resources. They are powerful people.
There can be three failings in this approach: firstly, policy and practice can be perverted and distorted in the filtering down; secondly, the new work might survive for only a short time; thirdly, the new work does not spread out horizontally at the grass-roots to embrace children and families beyond the limited scope of the initial new initiatives or pilot projects. Being aware of the limitations of the top-down approach can encourage us to consider other approaches and, when we use a top-down approach, show us what safeguards we must build into it.
a) How policy and practice can be perverted and distorted in the filtering down
It is unlikely that senior people at the top of our vertical organisations can share the same long-term commitment and passion for improved support for these children and families that we find at the grass-roots. This is inevitable. While they might initially give everything to a new initiative to build or reform early child and family support, they will have other demanding challenges on their desk next morning or next week. The same will be true for managers lower down in the hierarchies. These lower managers who have the responsibility to pass down the new work will have varying levels of passion, commitment or enthusiasm and will accordingly vary in the amount of time, energy and resources they want to devote to it.
The same must be true for the practitioners at the grass-roots who work with children and families. Each will have attitudes about the new policies and practice and views about the benefits or challenges these changes bring to their present way of working and to their professional ethics. Emotions have their part to play too: effective integrated early child and family support relies on close collaborative teamwork that relies in turn on a high level of honesty, trust and respect between colleagues. The filtering down process can founder here when practitioners do not yet have the required personal skills for genuine teamwork.
Sadly, perversion, distortion and delay in enacting new policies at the grass roots happen even when the new policies come in a legal framework.
b) New work might survive for only a short time
New systems for a city, region or country’s effective integrated early child and family support are likely to be fragile and might eventually succumb to one or more common threats. These include:
- Ministers, managers or practitioners losing their initial enthusiasm and commitment.
- People having to divert their attention to other issues by force of changing circumstances and workload.
- Initial funding coming to an end and no new sources being found – this very often happens to pilot projects.
- The plight of another group of people coming to the fore and taking precedence over the children and families this essay is discussing ̶ because of ever-changing social conditions and trends.
c) The new work does not spread out horizontally
The only valid intent must be to offer effective integrated early child and family support to all who need it in each city, region or country. There is no logic or fairness in restricting the effort to only a limited number of families. In this case, each new initiative must have two phases: firstly to establish a new system for a first group of children and families; secondly to roll successful work out horizontally across the city, region or country.
This second phase presents very different challenges from the first phase and is often neglected. The first phase can be seen as the easy part and is counted as a success when a number of families are helped. The official reports and press releases will reflect the achievement and the new benefits brought to these families but, at the same time, mask the number of families who have not been helped and might never be. Arithmetically, it might be that of the children and families who need the new work, only 10%, 5%, 1%, 0.1% or 0.01% or fewer have been helped. The second phase is very important indeed but might be neglected because it does not have all the glamour and excitement of the first pioneering projects. In fact, it is only the second phase that justifies the energy, time and money invested in the first.
Many readers who have direct experience of new top-down initiatives in effective integrated early child and family support will be able to add to my list of threats to their sustainability.
Part 2: The work of Interconnections
This essay has two sections:
- The independent work of Interconnections
- Interconnections working with UK government
The independent work of Interconnections
Since the mid-1990s, I have been working to promote effective integrated early child and family support under the consultancy name of ‘Interconnections’. To a very large extent this relies on my past experiences in the voluntary agency ‘One Hundred Hours’ which helped pioneer and validate the idea of offering a multiagency keyworker to new families of babies and infants who had significant neurological impairment. Commonly, these children had cerebral palsy with associated conditions, a named genetic syndrome or a condition with no known cause or label. Several of these children died during their first year or two.
Interconnections has a dual aim: Firstly, to highlight the fact that parents have unmet needs for information, for emotional support and for full involvement in decisions about support for their child; Secondly, to show the dangers of disorganised fragmented support and to discuss how both multiagency keyworking and the Team Around the Child (TAC) approach can create effective integrated multidisciplinary and multiagency support (and even transdisciplinary teamwork for those interested).
In this work, Interconnections has been spreading information, publishing books and running workshops, seminars, conferences and consultancy projects for people working with the children I have described above. Participants at events have been mostly practitioners and managers from health, education, social care and the voluntary sector. When TAC had become part of the UK government’s Early Support project, there was an increasing number of senior managers at these events. Academic interest has always been encouraged but minimal.
Attendance by parents and other family members is always a problematic issue. My ideal is to have audiences in which 50% are parents and 50% practitioners. This is for three main reasons:
- Parents can talk more effectively about their needs than can others speaking on their behalf. Many practitioners have no idea what family life is like with these children until they have heard parents speak about it. This remains true.
- Parents have a right to be present when children in this group are being talked about. To exclude them is the same as keeping black people out of meetings to discuss racial equality or keeping women out of meetings to discuss gender issues.
- When meetings are making practical plans to enhance local early child and family support, parents and other family members have a very important part to play.
I am often told that parents do not find it easy to attend workshops and conferences because of lack of time, child care or money for travel. Also, parents need to get children to or from school. In fact, all of these problems can be true but are easily solved when local agencies provide necessary support with a can-do attitude. There is also a common suggestion that parents might be out of their depth. I do not find this to be true but when a parent is nervous about speaking up, some moral support from practitioners they have come with is always effective. Invitations to parents to events such as these must always include parents whose children have passed through the baby and infant stages and parents whose children have died. They will all have relevant experience and knowledge if they are ready to share it.
Generally speaking, Interconnections has focused its work more on practitioners and their managers than on chief executives for whom these children and families might be only a small part of their concerns. This has been in the expectation that practitioners and managers would change their practice and, at the same time, send valuable information up to chief executives to influence policy.
Interconnections as a low-key project has had some limited success in a number of countries in promoting effective integrated early child and family support, but if I were starting again, I would focus much more on parent and family involvement. I have learned that:
- Practitioners at the grassroots can be strong drivers for local change and, in my view, carry a responsibility to take this as part of their role.
- Parents and family members are also strong drivers for change ̶ sometimes nudging practitioners out of their traditional mind-sets.
- Parents and practitioners together can be a formidable force. (More of this in the 3rd part of this essay.)
Interconnections working with UK government
The UK Labour government set up an innovative nation-wide ‘Early Support’ project early in the 2000s and involved Interconnections in a minor way in its planning and promotion. TAC became part of the new government guidance for supporting babies and infants who had multifaceted conditions. In very many localities, TAC became commonplace with the appointment within public services of ‘TAC Co-ordinators’ – a new role to oversee local TAC development.
All good things must come to an end as Early Support did finally in 2015. First of all the 2008 banking crash meant local authorities were now starved of the cash they needed for new initiatives such as Early Support and the project gradually ran out of steam as the Labour government changed to a Conservative government in 2010. My impression as an outsider is that David Cameron, the new prime minster, did nothing to help the Early Support project despite having an infant son with profound disabilities. This is a personal and brief account of the rise and fall of UK’s Early Support project. From my perspective its very welcome focus on babies and infants and their families has since been lost.
While the first part of this essay described some problems that can arise in a top-down approach, the UK Early Support project shows what can happen when there is over-reliance on government authority and resources. The great advantages can disappear as soon as one government gives way to another in the democratic process. The Early Support project was too short-lived to create lasting cultural change.
There is an account of the Early Support project here: https://councilfordisabledchildren.org.uk/our-work/whole-child/practice/early-support-integrated-and-person-centered-approach
Part 3: I suggest a combined bottom-up and top-down approach with local forums or ‘TAC Councils’ at the grassroots
In the first two parts of this essay I have suggested a top-down approach can be ineffective, whether the impetus comes from regional or national government, from chief executives in local services or from an outside agency acting as catalyst or consultant. I have also suggested we are all making very slow progress in establishing effective integrated early child and family support.
To start with, it is worth asking who really wants effective integrated early child and family support. Of course, the people directly involved as family members or practitioners do. But does anyone else? The general public is oblivious to the plight of this very small population of children and families. These children are never mentioned in mainstream press and media ̶ unless there is a court case about taking a particular child off life support or, equally sadly, when a desperate and unsupported parent has murdered their ‘special needs’ infant. Consideration and support for these children and families is simply not part of our world culture.
I mentioned in the second part of the essay that there has never been any significant interest from academics in the twenty years since the Team Around the Child (TAC) approach was first published. Nor have I seen a significant number of examples in UK colleges and universities of integration between education, health and social care departments. This academic integration would ideally have two levels:
- Integration on shared research projects in the field of early child and family support.
- Integrated courses in which students are properly prepared for multiagency and multidisciplinary teamwork in a whole-child approach.
My own investigation into what colleges and universities are doing in the UK and Ireland has been entirely depressing and I can see that, as it stands now, it is pointless to rely on academia to help improve early child and family support in any significant way. Is it a brighter picture in your country?
Perhaps there are two mechanisms for influencing the public in any campaign. One mechanism is academic research with published papers and the other is real stories about actual people for a much wider ‘popular’ audience. I feel sure that in the UK and other countries, for the time being, the latter is going to be the most effective in increasing public awareness about early child and family support.
In the bottom-up and top-down approach I am advocating in this essay, there is acknowledgement that power to allocate resources is held at the top of each agency’s management hierarchy while the ‘stories’ about children and families, about their strengths, about their needs, about the lives they live and about how they can best be supported, is held at the grassroots by parents and practitioners. When parents (and other family members) and their practitioners get together they can take power with each other:
- To influence how senior people manage and resource effective integrated early child and family support in their city, region or country.
- To generate stories in press and media to influence public awareness and opinion.
This approach to building effective integrated early child and family support fits well with the idea of co-production:
‘Co-production is an approach to decision-making and service design rather than a specific method. It stems from the recognition that if organisations are to deliver successful services, they must understand the needs of their users and engage them closely in the design and delivery of those services.
‘Co-production rejects the traditional understanding of service users as dependents of public services, and instead redefines the service/ user relationship as one of co-dependency and collaboration. Just like users need the support from public services, so service providers need the insights and expertise of its users in order to make the right decisions and build effective services.
‘In practice, it means that those who are affected by a service are not only consulted, but are part of the conception, design, steering, and management of services. It is often essential to support the participants and professionals throughout the exercise to ensure that they are able to contribute on an equal footing, e.g. by providing information, training, mentoring, etc.’ This is extracted from https://www.involve.org.uk/resources/methods/co-production
There are many ways to start to develop this bottom-up and top-down approach:
- It could start with a few parents talking with some of their trusted practitioners about a starting a shared initiative. Where it goes from there would depend on their first discussions.
- The approach could start with one or two senior managers wanting to enhance local early child and family support and deciding to facilitate a grassroots parent-practitioner forum or TAC Council.
- An outside agency coming in to a city, region or country as consultants could design a simultaneous two-pronged approach by talking to senior people (about need, resources, etc.) at the same time as talking to people at the grassroots (about parents and practitioners getting together).
As I mentioned in the second part of the essay, the grassroots effort could involve representative parents of children have grown beyond early support and might now have the energy and time to participate.
This three-part essay has been about babies and pre-school children who have conditions that can present significant obstacles to their development and learning – and about their families. I have defined an effective service as coming when needed, addressing issues that are relevant to the child and family and leaving the family feeling they have received the support they needed and asked for. I have argued that a valid system of early child and family support must reach all children in all parts of each city, region or country ̶ otherwise it is yet another pilot project for a select group.
In my view progress towards achieving this is extremely slow in all countries whether they have high, medium or low economies. A great sense of urgency comes when we realise that babies born as I write will have passed through their early years by 2026/7 – only a few short years away. It is my hope the essay will contribute to discussions about how more can be achieved. I will be happy to disseminate responses to it. It would be good to hear of projects in any part of the world that are progressing well towards a valid integrated early child and family support system.
Peter Limbrick, July 2021.
This essay was first published in three parts starting in April 2021.