Health, education and social care agencies in each locality must decide and describe what, in their combined view, good practice is. After that, it would be perverse not to abide by it
This is the fourth and last part of a series of informal observations on the Council for Disabled Children’s paper, ‘It takes leaders to break down silos: Integrating services for disabled children’. Their paper was published earlier this year (2019). The first of my observations can be found here, the second part here and the third part here.
I welcomed this important paper from the CDC because it brings renewed focus to a very important subject with which service providers have struggled for decades. While service providers have been struggling, children and families have been suffering with fragmented services that are very far from the ideal of seamless support.
Perhaps the timing of the paper was not auspicious. We have had in England more than a decade of financial austerity with an accompanying political message that has set tax payers against benefit recipients and the ‘able-bodied’ against people with disabilities. People of difference have been marked out as a problem to be solved rather than as valued members of a rich and varied society.
These negative attitudes coupled with a slow strangling of public services have made a pernicious and dangerous mix. Managers and practitioners have struggled to maintain the good practice we had in the beginning years of the millennium. It is understandable if they are not in a good position now to invest time, energy and money in new initiatives. Joining health, education and social care around children with disabilities is certainly a big initiative with many challenges.
I have always argued that integrated support that co-ordinates interventions and eliminates duplication, unnecessary report-writing and overload of practitioners will have a significant financial benefit for service providers. But if this becomes the primary motive, good practice for children and families will become secondary to financial management.
All planning for integration of health, education and social care (and other local agencies) should be based in good practice. This should be the starting point. I have already in these informal observations talked about some manager and practitioner attitudes that work against integration. I have also met parents with negative views on integration. Some have not wanted their child’s practitioners to join together in case they then ‘gang up’ on them. Very many parents of babies and pre-school children want all the therapists and teachers they can get and would not want their numbers reduced in integrative processes that join programmes together for the whole child.
There is an answer to this but it is not a quick answer. Health, education and social care agencies in each locality must decide and describe what, in their combined view, good practice is. This would then be used in appointing new staff members and in their supervision and further training. The same for new families: They would be given good information by each local service they encounter about locally agreed good practice in integrated working. This is what they would agree to when they accept support.
This should be a sensitive rather than a bullying process. But it is essential. The alternative is for managers and practitioners to persist in out-of-date approaches even though they know clearly what good integrated practice ought to be. This would be perverse and children with disabilities deserve better.
We can see the integration problem historically. Health, education and social care were established and have evolved as separate institutions. This works well for many people who have a health, education or care need but breaks down when needs cross the institution boundaries. This is where children with disabilities and their families encounter problematic fragmentation. Even more so when the child’s needs are complex and long term. Fragmentation also has a time dimension: Children and families’ need for a seamless service can be frustrated at transitions between pre-school support and school admission and later between child and adult services.
If we could go back in time, we might want to have a local directorate for children and young people instead of separate health, education and social care agencies. At government level, a powerful children’s minister would establish laws, policies and finances. This would certainly include some places where multidisciplinary practitioners meet with children and families. Child development centres and children’s centres are a good start. Schools and colleges would become centres for multidisciplinary work and integration around individual children and young people. A realistic calculation of what children with disabilities need would bring the necessary funds for this.
This is not the whole answer because the needs of children with disabilities and of their families are wide-ranging and complex. A one-stop-facility that brings doctors, nurses, teachers and social workers together might still have to send children and families elsewhere for counselling, benefits advice, genetic counselling, fostering and adoption services, neurological investigations, clinical or education psychology, etc. In that list I could have included police, the legal profession, sport and leisure facilities, adult education and more.
To meet these needs for wide-ranging integration, the pro-integration people in each locality must work to create a sustainable network for potential links between all of the above. This would need pre-agreement that people will join their work with others in response to the needs of a child and family at a particular time or event. Each organisation would agree in principle at the outset so that their managers and workers would not have to be persuaded afresh when a need for joint working arises. Examples would be bringing psychologist, family and dentist together when a child with autism needs a tooth extraction, and bringing family, nurse and leisure staff together to enable a child with medical needs to use the local pool.
The CDC paper, ‘It takes leaders to break down silos: Integrating services for disabled children’ makes the important point that leaders/managers are a very important part of the initiative to bring health, education and social services together. My informal observations have argued though they they are not the most important part and certainly cannot achieve integration on their own.
I believe local families have experience, knowledge and wisdom to bring to the effort. They can be collectively powerful and might be the prime movers in getting integration happening. Practitioners and managers are clearly powerful and effective once they see the need for integration. Then, joining local families and workers together at the start of the integration effort must be the best recipe for eventual success. I have argued that new integration processes will fail if they do not acknowledge and address attitudes and anxieties in workers and families. Many of these are hangovers from traditional fragmented support.
In my first informal observation I said practitioners and managers might resist and be unprepared for joint working if it was not addressed in their training course at university. Since then I have surveyed universities in the UK and Ireland and confirmed my suspicion that integrated training is a rarity. I cannot pretend it was the most thorough survey, but I suspect if there were prominent initiatives in the academic world I would have found them – and I did find a handful of partial examples.
In that first piece, I suggested a hindering factor in the development of integrated support is prejudice about disabled people and a failure to acknowledge the rights of disabled children. Attitudes in England about difference are at low ebb right now. I am sure a time will come when people with disabilities are valued and when society demands children with disabilities are properly supported. The integration task will then become possible.
These four informal observations are the starting point for a new practical manual by Peter Limbrick about integrating services for children and adults who have disabilities and special needs. This will be published by Interconnections early in 2020.