“The report intended to identify key factors enabling or hindering progress towards service integration but...has fallen short by omitting training, rights and discrimination and by underestimating user power.”
Informal observations on the UK Council for Disabled Children’s report: It takes leaders to break down silos - Integrating services for disabled children. By Amanda Allard, Andrew Fellowes, Anna Gardiner and Sarah Hart (2019)
Comment by Peter Limbrick, Interconnections, August 2019.
Summary and introduction
Integrating services for disabled children has been a large part of my work for the last twenty or thirty years or so in the UK and other countries. So this was potentially an important report for me bringing some optimism that it might lead to improved support for children and their families and a reduction of the damaging fragmentation that creates parental stress, spoils quality of family life and reduces opportunities for children’s wellbeing and learning. It is a big problem to solve.
The report represents a lot of work by informed and committed people but it did not leave me with any sense of hope that things might improve. Its suggestions for ways forward under the two headings, ‘Recommendations’ and ‘Making it work’, I would characterise as ‘more of the same’ as though a baker were saying the cake turned out badly so let’s try adding more of the same ingredients. I agree with its assertion that it takes leaders to break down silos but surely this is obvious given that senior managers are paid to manage their agencies and oversee their effectiveness and evolution in partnership with other local agencies?
I am going to suggest in these observations that additional bureaucratic procedures will not have their full effect until we have overcome prejudicial thinking about physical and intellectual disability and we have ceased to discriminate about people of difference in our health, education and social care systems. Reframing the integration debate in terms of the rights of children and families might help dissolve many of the barriers.
The report includes some consideration of parent and child involvement. This is valuable but in my view does not go far enough. Fragmented and ineffective systems will continue as long as senior managers and practitioners resist handing over large parts of their power to the people using their services.
I will also suggest that this report could have considered academic involvement in the topic of integration and in the initial training of health, education and social care practitioners. Until universities break down some of their own silos, they will fail to guide integrated service development and continue to turn out practitioners entirely lacking an integrated mind-set.
The report intended to identify key factors enabling or hindering progress towards service integration but in my view has fallen short by omitting training, rights and discrimination and by underestimating user power.
My informal observations are humbly offered under the headings:
The problem is the problem
Is SEND an exclusive term?
The problem is the problem
In the report’s ‘Introduction’:
We find local areas face a significant challenge in overcoming the historical complexity of the system around SEND and traditional siloed focus on specific cohorts of services.
Additional burdens were also created where national operational targets and reporting requirements placed on different agencies and services did not align making it difficult to identify shared outcomes across the board.....
Similarly, an Association of Directors of Adult Social Services (ADASS) conference on the vision for health and social care integration found that a short term obstacle to integration was the ‘impact of multiple programmes, e.g. STP, BCF, Pioneers etc...there are too many initiatives, and different priorities for different organisations’.
So fragmentation is the problem when we try to remedy fragmentation. We want to simplify the complicated system but we cannot simplify it because it is complicated. The problem is the problem. Hence, my apprehension that this report is suggesting more of the same – repeatedly putting more of the same things in and hoping for a better outcome. This feels to me like being locked into an orbit in which we will continue to circle endlessly around the integration problem but doomed always to come back to the point we started from.
The main thrust of these observations of mine is that we must find a way to leave the orbit, find some energy source that will allow us to escape the bureaucratic and institutional gravity that keeps us trapped. Readers will have their own suggestions where this energy might come from, but mine are firstly, user power and secondly, re-framing the integration problem in terms of rights and discrimination. But I first need to ask:
Is SEND an exclusive term?
I recently ran a series of seminars in England and Wales on the theme ‘Early Childhood Intervention without Tears’. At the seminars, many health practitioners working with babies and very young children seemed not to be aware of or influenced by SEND processes. The education practitioners and managers present who were working within SEND were not involved with babies and infants who were still at home with their families.
If the term SEND only applies to children in education (i.e. in an education placement) then it is exclusive of babies and very young children. If this report is focused on children with SEND then it, too, is exclusive. This matters for two reasons. Firstly, it matters because families of babies and pre-school children who have disabilities and special needs suffer in the extreme from multiagency and multidisciplinary fragmentation – the children and their families. If this report is about integrating services for disabled children, then it should embrace all disabled children from birth onwards.
Secondly, it matters because our concern for the education of children with special needs and disabilities must include babies and infants before they enter a nursery or school. If it does not, then we are guilty of bureaucratic fragmentation and discrimination. In my thinking, the terms ‘education’ and ‘learning’ overlap each other and the task of pre-school practitioners in health, education and social services is to help parents help their child learn, to equip parents with the confidence and skills to be the first educators of their children. This needs practitioners to know a lot about first learning (or ‘early education’) in terms of theory and practice.
In my work in the UK, I see a lack of education expertise in early child and family support. Many families have to make do with some sort of hit-and-miss therapy without the benefit of any effective multiagency or multidisciplinary intervention systems. The need for a greater focus on education in the UK for babies and pre-school children is discussed in my ‘Bringing up babies and young children who have very special needs’. This book argues that effective early child and family support must have three main elements ̶ health, education and family support, and that they must be integrated with each other. Very often, both education and family support are missing.
If this report is concerned for integrating services for babies and infants and if it is concerned for their educational needs, it does not make either concern explicit. Perhaps this sits within the wider context in which SEND is an exclusive term that does not apply to all children ̶ another contribution to fragmentation and potentially damaging the transition from pre-school services to nursery or school.
If UK national and local government and public services and the major voluntary organisations cannot solve the integration conundrum, they need help. In my view, parents and family members can help. This report acknowledges this in a small way, but only as an add-on. For instance, at the end of the section on ‘Findings’, there are good thoughts about ‘involving children and families in decision-making’. At the end of the section on ‘Recommendations’, there is a heading, ‘Supporting and involving families in decision-making’. At the end of the ‘Making it work’ section there is a good account of ‘Involving families in decision-making’. We learn in ‘Our approach’ that (with some confusion about the meaning of the term ‘professionals’):
In total we engaged with 74 professionals.... This group was representative of (paraphrasing) Children’s Commissioners, Service leads, Managers, Practitioners and (lastly) Parent carer representatives.
It would have been a very different report if contributions from parents and family members had been given priority at the top of each list, where, in my view, they rightly belong.
Can parents and family members as service users provide the energy to force our integration debate into a higher orbit? I believe so. Given that all of us in the established organisations are making such a bad job of it we certainly should give it a go. We could start by remembering that Scope and Mencap were begun by parents (as the ‘Spastics Society’ and the ‘National Association of Parents of Backward Children’ respectively). Parents have provided much of the energy and commitment to raise the profile of autism. We should not underestimate the power, commitment and creativity of families. Under the right conditions they could help us all get to grips with the integration problem. But it needs to be done properly.
I remember being in a consultation event run by a major voluntary organisation with government funding in which parents were put in groups not of their choosing, told where to sit, given questions they had not helped write, instructed how to manage their discussion, told how to record their responses and made to finish on time. Parents had not chosen the venue, date or time, and, unlike the staff present, were not being paid for their time. This is how not to do it.
But parent groups and forums can be supported without being directed. This can include finance for time, transport, child care, lunch, etc and for renting premises. There are UK organisations with valuable experience in catalysing parent and user power and their help should be enlisted in organising consultations. When we consider that it is families we are trying to integrate services for (and that our salaries come from their taxes), it is logical to make parents and children central to the process. What answers will they come up with? Who knows? But I do know that UK organisations have failed to find answers so far.
This is an important political issue for me. When I am in a meeting discussing provision for disabled children and their families and I see there are no parents or family members present, I wonder what has prevented them attending. If I ask the professionals they always tell me it is because parents find it hard to get to meetings. This is never the real reason. Parents are excluded by conscious and unconscious decisions made by the meeting’s organisers. Then, when some parents are present, I wonder if they are being paid the same hourly rate as the professionals around the table. Of course, they are not.
Some people who work in public services and voluntary organisations are, or have been, parents of disabled children. They have a lot to offer, but I do not feel these people can be fully representative of all parents of disabled children who, typically, are impoverished, without professional status and lacking the benefit of regular income, pension, sick pay, paid holidays, etc.
In political terms, service managers and practitioners hold real power and are reluctant to give any of it away to users. This situation and ways forward are explored in my Horizontal teamwork in a vertical world: exploring interagency collaboration and people empowerment. All meetings I have ever attended that include users are more grounded, more creative and more exciting than those that have excluded them.
Rights and discrimination
My argument here is that fragmented service provision for children with SEND and their families is severely sub-standard and that society allows it to continue because of a prevailing attitude that children with SEND (and often their parents) are somehow sub-standard human beings. When society begins to properly value these children and families then problems of integration will be easily solved.
Who holds these prejudicial attitudes? Generally speaking, people who have not met or worked with children with SEND. Some parents have told me they were prejudiced about disabled people before they had a disabled child and now are not. Children with physical and intellectual disabilities can be treated very badly in schools, care homes and hospitals with only some of the ill-treatment coming into public view. People who work with children in universal services might hold children with SEND in lower esteem than other children they care for. This can apply to school managers and teachers, children’s nurses, health visitors, social workers and others.
Readers must make their own judgement about to what extent they feel disabled people suffer prejudice and discrimination. In my experience, these negative views impact on disabled adults, teenagers, children and babies. This negativity then influences to what extent society wants to provide the necessary resources, commitment, energy and creativity to eliminate service fragmentation. Thinking of service integration as an established right to which children and families are entitled in the UK would inject new energy and focus into the debate.
For as long as I have been meeting parents, practitioners and managers to promote integrated support, there has been general awareness that things will not improve very much until joint working features in professional training. I would like training to have been included in this report as a key factor enabling progress. It is not reasonable to confront new practitioners with a requirement to integrate their work with others if they have not had some preparation for it in their training.
Effective professional training would allow students from different disciplines to encounter each other and share some study and project work. For instance, trainee teachers could meet physiotherapists, speech and language therapists could meet nurses, psychologists could meet social workers. There could be lectures on a whole-child philosophy and project work on multidisciplinary teamwork.
A project I am involved with at the moment is trying to identify if this happening in the UK and Ireland. This entails looking into more than 150 universities to find courses that integrate health, education and social care and making contact with relevant academics to find out who is including integration in undergraduate and postgraduate studies. This is not funded work and I do not expect it to result in usable data, but so far I have found almost nothing.
A linked factor enabling or hindering progress are the various colleges that support, guide and oversee professional groups, for instance the Chartered Society of Physiotherapy. I imagine if these authoritative organisations became interested in integrated work for children with SEND, then this would influence both training and practice.
The report tells us under ‘Joint Working Arrangements’ that:
Participants in Area B reflected on their experiences of working in integrated teams and of co-location (sharing office space with another team). They felt that such approaches improved their ability to work together with colleagues from different service and agencies.
Co-location in shared buildings will only ever be a limited part of the answer. I have seen shared office space create professional rivalries, for example between education and psychology teams. I have worked with very many UK child development centres (CDCs) in which various professionals are co-located (doctors, nurses, health visitors, therapists, sometimes social workers, sometimes teachers, sometimes psychologists). In each case I was invited in to help them create joint working with children and families. They were fragmented despite co-location. But co-location can bring benefits. The Gem Centre in Wolverhampton is one example (when I knew it) because, I assume, multiagency and multidisciplinary integration were explicit aims in the design of the building and its working systems.
The more realistic option for me is to co-locate around the child. This can mean multiagency and multidisciplinary practitioners meeting together in a baby’s family home for a Team Around the Child (TAC) meeting or in the child or teenager’s school. When society fully values these children, time and money for these meetings will be available. The Team around the Child approach is described in ‘TAC for the 21st century’.
It was good to see keyworkers mentioned in the report. It has been general knowledge for many years that families greatly value keyworkers as practitioners they get on well with and trust and who can help keep all aspects of support linked together and co-ordinated as well as possible. It has also been known for many years that public services and voluntary agencies find it impossible to provide keyworkers for all the children and families who could benefit from them. The report gives one good example of practitioners combining keyworking with their main role, Walsall CDC is another. So we have known for a long time it is possible. I have been a keyworker in a voluntary agency that employed practitioners as keyworkers with no other role. This is an excellent model but very expensive. (See The Keyworker: A practical guide.)
The issues about keyworking are fully discussed in my 2004 essay, ‘Keyworkers are an essential part of a quality service for families. So why do most families not have one? Is Team Around the Child part of the solution?’
In its ‘Introduction’, the report asserts:
There is broad support for the principles of joint working and integration at local level, and many local areas are devising their own methods for supporting coordination across the different services accessed by children and young people with SEND and their families.
This is not my experience. I do not see silos breaking down to the extent that children and families need them to. In my view, for a variety of conscious and subconscious, spoken and unspoken, logical and illogical reasons the generality of managers and practitioners are content to stay within the bounds of their discipline or training. This seems also to apply to academics who ought to be drivers for service integration. There are some good examples of service integration and this has been true for as long as I have been taking an interest in the subject. But this does not mean we are on the way to integrating services for every child with SEND who needs it or for babies and infants. We simply are not. I do not see the situation changing very much in the time it will take for babies being born this week to reach adulthood.
The report is right in saying leadership is an essential enabling factor. But on its own it is not enough. I have suggested prejudice and discrimination are major factors hindering service integration. While this does not lead to an immediate solution, I do feel it is important to acknowledge this larger part of the problem. We can then see that mere bureaucratic reforms are not going to remedy silo attitudes, disorganisation and fragmentation. People campaigning for the rights of black and minority ethnic people will recognise the situation.
As the debate continues and as some services in some localities counter some of their fragmentation (while at the same time other integrated services fall by the wayside), we must do all that is in our power to be as joined up as possible around each child with SEND, around each baby and pre-school child with disabilities and special needs and around their families. This is just on the human level of trying to help when we see someone struggling and I have seen many examples of practitioners spontaneously coming together around a child or young person in a crisis.
At the grassroots level for babies and pre-school children, this is all that Team Around the Child is – a willingness by practitioners to join with parents in a collaborative team effort to overcome immediate challenges that come from fragmentation. The same principles can apply to older children if adapted to the school culture. It does not matter what these individualised multiagency and multidisciplinary teams are called (and ‘TAC’ is not trade-marked).
At senior management levels, the TAC approach for babies and young children requires multiagency managers to get together to create the conditions for local TACs to function and prosper. This brings us back to the main theme of the report. My experience is that it is more fruitful to move upwards from joint work for individual children and families to the necessary integrated efforts of senior managers than to try to pull endless strands together in what parents call the ‘jungle’ or ‘maze’ of local bureaucracy in the vain hope some integrated working will filter down to children and families. My ‘Integrated pathway for assessment and support’ follows this approach.
When there are several TAC-type teams in which parents and practitioners struggle together to integrate support around individual babies, children and teenagers, they can usefully come together as a local forum to identify key enabling and hindering factors. This practical and grounded information can be a main driver to inspire and support senior managers in their efforts to integrate local services.
Resources (See Interconnections Bookshop)
Limbrick, P. (2019) Bringing up babies and young children who have very special needs: A 21st century guide for parents, students and new practitioners. Clifford: Interconnections
Limbrick, P. (2017) Early Childhood Intervention without Tears: Improved support for infants with disabilities and their families. Clifford: Interconnections
Limbrick, P. (2012) Horizontal Teamwork in a Vertical World: Exploring interagency collaboration and people empowerment. Clifford: Interconnections
Limbrick, P. (2009) TAC for the 21st Century: Nine essays on Team Around the Child. Clifford: Interconnections
Limbrick, P. (2004) Keyworkers are an essential part of a quality service for families. So why do most families not have one? Is Team Around the Child part of the solution? PMLD Link, 6, (2). Also in TAC for the 21st Century (Essay 2)
Limbrick, P. (2003) An Integrated Pathway for Assessment and Support: For children with complex needs and their families. Worcester: Interconnections
Limbrick, P. (2001) The Team Around the Child: Multi-agency service co-ordination for children with complex needs and their families. Worcester: Interconnections
Limbrick-Spencer, G. (2001) The Keyworker: a practical guide. Birmingham: WordWorks with Handsel Trust