John Davis, Professor of Childhood Inclusion, looks at author J.K. Rowling’s new initiative aimed at eradicating orphanages by ensuring all children have family and community care by 2050. Davis provides a rounded analysis of the challenges Rowling’s initiative is likely to come up against in such a massive transition process, and draws on his own experience with the Fiesta project as a guide of how to confront the issue effectively
When J.K. Rowling tells us that there are eight million children in orphanages around the world (one million in the EU region) and the vast majority of these children have living parents, we need to listen. When she follows that up by pledging her millions to resolving this issue by 2050 we need to celebrate her determination to confront generations of discrimination. This aim and an announcement earlier this year has received some coverage in the Scottish media but not as much as one might have expected.
In basic terms, poverty, a lack of family support and disability discrimination result in children not being looked after by their families and Scotland should be proud that one of its own has been so creative in her work life that she is now in a position to support efforts to take on this most ingrained of issues. LUMOS in collaboration with the UNESCO chairs at Penn State University and The National University of Ireland will be researching and developing innovative approaches that seek to support family and community based alternatives to orphanages.
So what problems await them? In recent years I was involved in the FIESTA research project which received 500,000 Euros from the EU to promote more integrated and inclusive approaches to issues of transition concerning disabled children in educational contexts. The FIESTA project encountered a lot of barriers to inclusion and yet it also enabled children, parents and professionals to identify lots of solutions to those problems. This article poses the question: what can J.K. Rowling and the LUMOS initiative learn from the FIESTA Project?
“This article poses the question: what can J.K. Rowling and the LUMOS initiative learn from the FIESTA Project?”
The FIESTA project examined the concepts, structural roles, responsibilities and relationships that foster transition in specific EU countries (Bulgaria, Cyprus, Greece, Ireland, Netherlands, Romania, Catalonia/Spain and the Scotland/UK) . In particular, it examined children’s parents and professionals views of transition from early years services to primary school and from primary school to secondary.
The FIESTA project found that deficit model perspectives created barriers to transition, for example problematic concepts included: that the professional knows best; disabled children are broken; and exclusion is the only source of action until disabled children are fixed. Such thinking prevented processes of transition from being based on the aspirations, views and ideas of parents and children. The ‘professional expert’ model also prevented collaboration between different professionals and restricted the potential for a shift in power relations in local settings to enable disabled children to adopt leadership roles in processes of transition.
We can see professional resistance to LUMOS emerging already in some areas of social work that have sought to promote orphanages as nurturing, loving places that must be kept open. Yet, the figures speak for themselves – institutions cost shed loads of money – familial care does not and with support should be more appropriate.
So the solution is to address poverty in communities, support families to look after disabled children and ensure community based solutions are properly evaluated and reviewed so that children receive the nurturing and loving support they require in communities not institutions.
“So the solution is to address poverty in communities, support families to look after disabled children and ensure community based solutions are properly evaluated and reviewed…”
The LUMOS project can only be judged as effective if it recognises and challenges power relations and vested interests in the process through which children are transitioned from residential care to family and community care. If the project simply places children into new oppressive settings it will not have succeeded. Indeed, UNESCO have recently announced a project to track the outcomes of children leaving orphanages in an effort to respond to criticism from the social work field.
The FIESTA project found that for transition to work it should not be thought of as a linear process (one step at a time) but should rather be perceived as holistic (requiring multiple interconnected changes). This project also concluded that transition requires a collaborative approach that engages with notions of rights, equity, anti-discriminatory practice and flexible pedagogy.
Whilst many countries now have a strong policy context for inclusion that is cognisant of the UNCRC and UNCRPD , there is still a need for creative and innovative local and national approaches that overcome the policy/practice divide and also challenge traditional cultures of exclusion which assume, as has been the case at times in the past in the UK, e.g. that disabled children should always be educated in separate residential institutions.
Of particular note in the FIESTA project was a lack of innovative local structural resources such as accessible equipment, mobility support, staffing, schedules, etc., however, these could be overcome if cultural and relational resources existed that enabled communities to recognise the capabilities of disabled children and viewed them as equal rights holders. Such shifts occurred most often in local communities (such as in Catalonia) where traditional political narratives of equity (e.g. political and gender rights) were easily adapted to contemporary ideas of disability inclusion.
The FIESTA project differentiated between professional, parent and child led transition and concluded that there is a requirement for greater case, scenario and problem-based training on transition to help stakeholders develop approaches to transition that are more adaptable, participatory and inter-relational.
At the centre of this shift is a need to recognise the strengths and capabilities of disabled children and young people. In particular, the FIESTA best practice report recommended that participants who take part in collaborative learning on inclusive transition should be enabled to discuss the implications of different conceptual approaches and recognise where these approaches inhibit or support child-led, parent-led, collaborative and inclusive: assessment, planning, delivery, review and evaluation.
The social model of disability places importance on removing barriers to inclusion be they structural (e.g. poorly designed buildings), cultural (e.g. the notion that disabled children are incapable per say of communicating there views) and relational (e.g. bullying by non-disabled children and adults). Simply placing children into cultural and relational contexts that are not inclusive and well thought through will not improve their lives. Literature in Ireland, Spain and Romania has associated positive transition and inclusion with ‘communities’ where everyone is included and local practices recognise the intersection of issues of age, ethnicity gender, poverty and sexuality etc. Disabled children and young people in the FIESTA project suggested that child led transition improved academic performance in schools, led to quicker change and required adult community members and professionals to be more accepting of difference.
“The LUMOS process will be required to be multi-faceted if it is to maximise the outcomes achieved for the investment that has been committed.”
This suggests that the LUMOS process will be required to be multi-faceted if it is to maximise the outcomes achieved for the investment that has been committed. The LUMOS process is a very courageous and principled initiative that seeks to overcome generations of taken for granted practice – such an endeavour will require a well thought through multi-level, on-going and systemic planning, review and evaluation process to ensure real and substantive change occurs in children and young people’s lives.
The FIESTA literature review highlighted the importance of recent initiatives in Scotland that utilised the ‘my world triangle’ and resilience matrix to instigate multi-professional collaboration and participatory planning with children and parents. In the FIESTA project children identify positive transition with ‘equal opportunities’, accessible buildings and being able to participate in as full a range of every-day activities as possible.
Elsewhere in a book on multiprofessional working I have highlighted the need for such analytical tools to also be utilised with parents and professionals to ensure that adults have the capacity to deliver on the promises they make within planning processes and that assessment process fully recognise the every-day political context of childhood e.g. some professionals are part of the problem not the solution.
Indeed, various writing on integrated working identify the need for multi-professional working to create local spaces for dialogue, processes of budget sharing and new service structures. If participatory planning is to effectively enable and support transition processes of inclusion we have to recognise children and parents as experts on their own lives. We need also to recognise that community and peer based support can be as important as professional intervention.
Of particular importance is the identification of a key professional coordinator (named person/people) who helps families negotiate their way through local systems, promotes parent/child choice and enables resources to be moved quickly to respond to issues that arise in disabled children and young people’s lives. Recently the Scottish Government was taken to court over this role as outlined in the Children and Young People’s act but law lords ruled that the act did not infringe parent’s human rights.
Yet, we also know from the work of Dolan and others in Ireland that services should adopt the practice of minimum intervention and look to foster supportive relationships within local communities. Hence, the LUMOS process will need to balance solutions based on informal support with those involving multi-professional intervention.
“The ultimate aim should always be to plan to a point where as little formal support as possible is required so that children and young people can live, from their own perspectives, as inclusive lives as is achievable.”
The ultimate aim should always be to plan to a point where as little formal support as possible is required so that children and young people can live, from their own perspectives, as inclusive lives as is achievable. But it should also be noted, as I have argued elsewhere with colleagues, that innovative planning process will have little effect if enormous problems such as poverty are not addressed at the same time – hence LUMOS has a lot of work to do to ensure that families and communities have the resources to make a difference in children’s lives.
Similarly, children should not simply be returned to families without prior proper assessment and dialogue. The FIESTA project found that the most effective structures of inclusion, integration and transition involved early planning and local dialogue. It suggested that parents and children should receive tailored rather than generic documentation and support. The FIESTA project also recognised that children, young people and parents can be active participants in designing, planning, reviewing and implementing policies, guidance and adaptations that aim to promote transition.
The finding that children and parents can be co-designers of transition processes sets an important task for LUMOS when working with ‘new’ or ‘existing’ parents or family members. That is, when seeking to include disabled children back into their family structures, a great deal of prior effort will have to go into ensuring the transition process helps children to build loving relationships with the family members they will newly or once again be co-habiting with and the subsequent community members that they will interact with.
“It is important that transition processes are not simply designed by professionals in grey suits in dull rooms.”
It is important that transition processes are not simply designed by professionals in grey suits in dull rooms who might-overlook the need for a variety of relational based approaches to be adopted to re-introduce disabled children and young people into their communities.
The FIESTA project identified 9 key aspects of effective transition that could help LUMOS achieve their aims and co-design the process of transition with children and families:
Formal Transition Framework – Develop a formal transition framework which is flexible to the individual needs of children with additional support requirements and adaptable to national policies. A framework that details pre-transition preparations and post transition evaluation to ensure successful transition and meaningful inclusion.
Holistic approach – Recognise the educational, psychological, social and cultural contexts of a child with additional support requirements and their families. Which will provide a holistic approach to learning and remove barriers for learning.
Participation – Ensure children with additional support requirements and their parents are involved and are at the centre of all decisions that affect them.
Tailor made – Facilitate children with additional support requirements through bespoke approaches and pedagogy tailored to their individual requirements.
Information – Provide relevant, up to date, timely and accessible information to children and their parents.
Key worker – Formalise a key working system (point of contact) for children with additional support requirements and their parents to support them throughout the transition process. The key worker is an essential role for all professionals to liaise with and communicate with ensuring a clear pathway of communication for all.
Continuation of Supports – Identify a clear pathway for the continuation of supports for children with additional support requirements during and subsequent to transition.
Collaborative Working – Ensure professionals in education, social work and health collaborate using a pro-active approach to meet the needs of children with additional support requirements during transition.
Training- Provide training and continuous professional development for professionals that centre on managing transition, adapting the curriculum, producing co-constructed models of inclusion, and valuing the strengths and capabilities of disabled children.
These suggestions might also be useful for planning transition support to the children who are currently fleeing from Syria. We need to ensure that we are ready and willing to engage with children and parents, whatever the nature of their transition.
In summary, participatory co-design of the transition process will require: clear avenues of communication, supportive policies on information sharing, shared goals, timely evaluation, strong relationships and whole community support. In particular change processes will require contemporary training and learning initiatives for professional staff, parents and community members on best participatory, strength-based and inclusive transition practice.
The LUMOS initiative raises questions concerning whose views are given credence, who is enabled to adopt leadership positions, whether there will be collaborative problem solving and what concepts underpin decision-making during process of inclusion and transition.
“Neo-liberal ideas concerning the ideal family unit represent children as the possession of their parents.”
These questions demonstrate the huge task that LUMOS has set itself – we in Scotland must all support them in whatever way we can if this seismic shift is to be achieved.
Neo-liberal ideas concerning the ideal family unit represent children as the possession of their parents. This characterisation was never more obvious than in the case of the recent challenges to the Children and Young People Act in Scotland – where various groups got involved in the costly but ultimately doomed court action.
For LUMOS to be successful we must recognise that the community, not simply the family, brings up the child – as we progress our understandings of childhood in a Common Weal focussed Scotland we need to keep this notion at the heart of our policy and practice development.
Professor John M Davis is Professor of Childhood Inclusion at the University of Edinburgh. The views set out in this article are his own and not those of his institution or research funders.
Picture courtesy of Common Weal