‘It takes leaders to break down silos: Integrating services for disabled children’ (CDC paper). Further observations focusing this time on what families can do to help integrate local services

editorial‘If fragmentation has been highlighted...as a problem for children and families, there is nothing to prevent parents setting up a meeting...and inviting service managers to it.’

This is the third 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 and the second part can be found here.

In the first part of these observations I said:

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 am going to suggest here that contributions from local representative parents and family members can be a major enabling factor in moving towards integration of health, education and social care for children with disabilities and their families. This third part of my informal observations has four sections:

Leaders and leadership

Making families central to the debate

Surveying user satisfaction

Respect for families

Leaders and leadership

I want to start by looking at what can be meant by the terms ‘leaders’ and ‘leadership’ since the CDC paper asserts leaders can break down silos. The sense I get from their paper is that leaders are either part of government or managers of local services. I wonder if we can move forward in integrating services for disabled children and their families by applying a wider use of these two terms.

In the second part of my observations I argued that each locality that intends to integrate health, education and social care around all babies, infants and children who have disabilities and special needs must create a horizontal landscape in which managers and practitioners feel safe to work with each other across agency boundaries. In this new flattened-power landscape, ‘manager’ does not mean the same as ‘leader’, and ‘leadership’ requires a different set of skills from ‘management’.  In Horizontal Teamwork in a Vertical World I describe the leadership task as follows:

This can be termed quasi-management because it is an overseeing role that is qualitatively different from management in a vertical organisation. Linear authority, under which workers carry a contractual obligation to do as they are told, is replaced here by leadership characterised by influence, trust, respect, resourcefulness and creativity and which employs skills in operating effectively across agency boundaries, working from an evidence base and managing change. The marker of success in this is the ability to engage, innovate and negotiate without the aid of direct power over others. (Pages 76-77)

Leadership in this sense brings people together into mutually respectful discussions in which imagination and creativity are positively encouraged. This can help everyone break free of the constraints of local bureaucracy.

Making families central to the debate

When parents and family members are brought more fully into the debate, they can help at successive stages of service development. Firstly, they can help nudge their service managers into an integrated mind set. If managers are going to be drivers for change, then some will first need to be persuaded why change is necessary. (The late Dr Penny Lacey of the University of Birmingham’s School of Education once told me that in her experience some services can delay following new official policy and guidance for ten years or more. In these cases, a strong message from families might help get things moving.)

Very many of the health, education and social care agencies I have worked with operate under what appears to be a ‘take it or leave it’ institutional attitude. This is in spite of the commitment and professionalism of individual people working for them. Agencies that have transcended this out-dated attitude spend time learning in depth what families feel about the support they and their child are receiving and then respond to what they hear. 

Effective user-satisfaction explorations can be a painful process. When I have facilitated discussions between agencies and the families using them, I have seen managers in tears as they come to fully understand the short-comings of the support they are offering. (And I have seen parents then in tears because they had not wanted to upset managers and team members.) While user-satisfaction is a major concern in commerce and industry, it can be perceived as a threat in health, education and social care – sometimes a threat to be avoided for as long as possible.

The result of this is that in many localities families are held powerless in the running of local agencies. They are then also powerless to influence how the local agencies work together to provide their children with a seamless service. While many families are receiving unsatisfactory fragmented support, there is no mechanism for them to collectively report in depth to service managers, and then service managers have no incentive to strive for integration. So it goes on.

Surveying user satisfaction

While this paper is about integrating services to counter fragmentation, I would not suggest that local surveys should focus their questions in these terms. It is later, in the analysis of responses, that:

  • some dissatisfactions and unmet needs are identified as being caused by fragmentation
  • some user satisfactions are found to be the result of people working together.

The second of these two are the good practice that service development programmes can build on.

Which agency does the survey will depend on the local situation. It can be a health, education or social care agency operating on its own. If two agencies are already working together, they can do a joint survey. If there is already an effective health/education/social care integrated pathway then it will have built into it a system for regular family surveys. In my experience, even a survey carried out by a single agency can show problems caused to children and families by fragmentation.

Questionnaires are not the appropriate medium for an in-depth survey. Quick written answers are unlikely to do justice to the complexities of child and family situations and their practical, relationship and emotional components. Interviews and group discussions will go deeper.

The topics to be surveyed will depend on which service is doing the survey. It will be essential to include some broad questions to make sure the child and family’s whole situation is properly covered. For instance, sleep should be explored because sleep-deprived disabled children and their siblings cannot learn and sleep-deprived parents cannot cope. Similarly, some questions should be carefully framed to explore child and family’s quality of life. This will show up those families who are kept busy and exhausted in fragmented systems with too many meetings and assessments, too many demands to let each professional know what the others are doing and too much energy spent in working to keep everything together for their child against the odds.

A related factor in all of this is the mental health of child and other family members. For instance, giving young children too many professionals and programmes can get in the way of attachment. Keeping parents too busy in fragmented and disorganised support can create unnecessary stress and strain. Many parents tell me they get more stress from how support is provided than they do from their child’s condition. Long-term exhaustion and stress can surely cause some children and adults mental health problems later on. Issues of respect, attachment and quality of life are discussed in Early Childhood Intervention without Tears.

If we are serious about properly involving local families in the fragmentation/ integration debate, then we will invite representative parents into discussions to design survey questions and then into later discussions to analyse responses to see which good practice comes from joint working and which problems are caused by people keeping their work separate from each other. So this involvement of families has three stages:

1.     Helping set up user surveys

2.     Helping analyse the responses

3.     Helping develop services in line with the survey findings

Respect for families

I believe families should have a prime position in service development working in partnership with practitioners and managers.  The initiative does not have to come from management. A strong parent forum or parent council could carry out its own local family survey focussing on issues that it knows are relevant at the time. Parents can then take every opportunity to talk about their findings with service managers. This will be very powerful.

If fragmentation has been highlighted in a survey as a problem for children and families, there is nothing to prevent parents setting up a meeting about integration and inviting service managers to it. In this way, families can be a strong driver for change.

It is not a matter of setting parents against managers or vice versa. When parents and managers can work together in the spirit of horizontal co-operation, they will become very strong in shaping local provision. My evidence for this optimism is the UK record of family initiatives in the field of childhood disability during the last fifty or sixty years. There are very many organisations established by parents and very many instances of parent pressure influencing national and local government policy. Perhaps this is not exclusive to the UK but I am not aware of this level of family-driven initiatives in other countries. This is why I am convinced that involving families in the effort to integrate local health, education and social care will give the debate new energy and move it out of the circular orbit in which it is presently stuck.

In this, we must avoid exploiting willing parents and family members. Service managers who want to benefit from family expertise must arrange their budgets so they can pay for it. This must include fees, travel expenses and any necessary child care. It is not reasonable or fair to expect family members to be the only people around the table who are unpaid. When managers say they cannot do this because there is no budget for it, they really mean no allowance was made for this expense when the last budgets were agreed. There is no reason why these administrative decisions cannot be made with foresight about family involvement in the year to come.

Conclusion

As in the previous parts of these informal comments, I have expanded the scope from the CDC paper’s focus on children with SEND to children of any age who have disabilities and special needs. This brings in babies and pre-school children who are not yet admitted into education provision.

I have suggested that family members, with their considerable pool of knowledge, experience and resourcefulness, should be considered an essential enabling factor in integrating health, education and social care.  In my view, local service managers can sometimes exist in a ‘service-provider’ silo that holds families at a distance and keeps them powerless in service development processes. This exclusive attitude is a major factor hindering progress towards service integration.  Well-planned family involvement is a major enabling factor.

Peter Limbrick. November 2019

Relevant books:

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 

CDC have produced a document to enable parents to push more effectively for integrated services for their children: Shaping services around your child.

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