Evidence reviews for commissioning, practice and service delivery models

Evidence reviews for commissioning, practice and service delivery models

Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care

Evidence review N

NICE Guideline, No. 213

London: National Institute for Health and Care Excellence (NICE); 2022 Mar.

ISBN-13: 978-1-4731-4460-6

Commissioning, practice and service delivery models

This evidence report contains information on 2 reviews relating to commissioning, practice and service delivery models:

What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs

Commissioning, practice and service delivery models to deliver joined-up care

Recommendations supported by this evidence review

This evidence review supports recommendations 1.15.2 - 1.15.4, 1.15.12, 1.17.1, 1.17.2, 1.17.6, 1.18.1 and the research recommendations on dedicated keyworkers, care close to home and joint commissioning arrangements. Other evidence supporting these recommendations can be found in the evidence reviews Views and experiences of service users (evidence report A), Barriers and facilitators of joined-up care (evidence report K), Views and experiences of service providers (evidence report M).

Review question

What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

Introduction

This review aims to identify effective models for the delivery of joined-up health, social care and education services for disabled children and young people with severe complex needs.

At the time of scoping and developing the review protocols, documents referred to health, social care and education in accordance with NICE style. When discussing the evidence and making recommendations, these services will be referred to in the order of education, health and social care for consistency with education, health and care plans.

Summary of the protocol

See Table 1 for a summary of the Population, Intervention, Comparison and Outcome (PICO) characteristics of this review.

Table 1

Summary of the protocol (PICO table).

For further details see the review protocol in appendix A.

Methods and processes

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in appendix A and the methods document (Supplement A).

Declarations of interest were recorded according to NICE’s conflicts of interest policy.

Effectiveness evidence

Included studies

Three mixed methods studies were included in this review (Craston 2013, Greco 2005 and Thom 2015).

The included studies are summarised in Table 2.

One study compared different practice and service delivery models for management of care (Greco 2005), 1 study compared different practice and service delivery models for individual case management (Greco 2005), and 3 studies compared different commissioning models for financial arrangements (Craston 2013, Greco 2005 and Thom 2015).

See the literature search strategy in appendix B and study selection flow chart in appendix C.

Excluded studies

Studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.

Summary of studies included in the effectiveness evidence

Summaries of the studies that were included in this review are presented in Table 2.

Table 2

Summary of included studies.

See the full evidence tables in appendix D and the forest plots in appendix E.

Summary of the effectiveness evidence

Overall, services receiving designated funding, with designated service managers and with clear key worker job descriptions had important benefits over those with no designated funding, no designated service manager and partial or no key worker job descriptions, respectively, for parents’ satisfaction with key worker services. There was also an important benefit of joint or pooled budgets over separate budgets in terms of fewer parents saying they were fairly or very dissatisfied with services, that it took too long to access services and that information was not shared across services well or at all. There was also an increase in the number of parents reporting that planning had taken place jointly with pooled budgets compared with separate budgets, but there were no differences in number of parents who were very or fairly satisfied with services or that reported information was shared across services very or fairly well. There was no important difference in parents’ satisfaction for services with and without parental involvement in the steering committee or services with and without designated key workers.

Only three studies were found for this review question and the majority of the evidence was low quality, from single studies and seriously imprecise. Further, none of the included studies reported local availability of services or use of services.

See appendix F for full GRADE tables.

Economic evidence

The economic review of the evidence was undertaken for this review and the review of meeting health, social care and education needs simultaneously. See economic evidence in the meeting health, social care and education needs, including changing and evolving needs section.

Summary of included economic evidence

See the economic evidence tables in appendix H and summary of studies included in the economic evidence review in the meeting health, social care and education needs, including changing and evolving needs section.

Economic model

See economic model in the meeting health, social care and education needs, including changing and evolving needs section.

Evidence statements

Economic

See the economic evidence statements in the meeting health, social care and education needs, including changing and evolving needs section.

The committee’s discussion and interpretation of the evidence

The outcomes that matter most

This review question focused on the impact of models for the delivery of joined-up health, social care and education services on service-focused outcomes. The impact of models for the delivery of joined-up health, social care and education services on person-focused outcomes, such as quality of life, are included in the review of ‘Commissioning, practice and service delivery models that meet education, health, and social care needs’.

Service user satisfaction and access to services were prioritised as critical outcomes by the committee. Service user satisfaction was selected as a critical outcome due to the importance of providing person-centred services. Access to services, measured both in terms of local availability and waiting times, was selected as a critical outcome, as being unable to access services may exacerbate children and young peoples’ needs.

Joined-up support and use of health, social care and education services were selected as important outcomes by the committee. Joined-up support, measured both in terms of cross-sector planning and effectiveness of information sharing, was selected as an important outcome as the committee agreed that joined-up support should better enable services to meet the needs of children and young people. Use of health, social care and education services was included as an important outcome as another way of capturing the accessibility of services.

No evidence was found that reported local availability of services or use of services.

The quality of the evidence

The quality of the evidence was assessed with GRADE and was rated as low to moderate. Concerns about risk of bias were “serious” for all outcomes. The most serious concerns were biases arising from selection of participants and measurement of outcomes. There was “no serious inconsistency” for all outcomes, due to only one study reporting all but one outcome of interest. There was also “no serious indirectness” for all outcomes. Concerns about imprecision ranged from “serious” to “no serious imprecision”. Serious imprecision was due to 95% confidence intervals crossing boundaries for minimally important differences.

Benefits and harms

See benefits and harms in the meeting health, social care and education needs, including changing and evolving needs section.

Cost effectiveness and resource use

See cost effectiveness and resource use in the meeting health, social care and education needs, including changing and evolving needs section.

Commissioning, practice and service delivery models that meet education, health and social care needs

Review question

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Introduction

This review aims to identify effective combined commissioning, practice and service delivery models for meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs.

Summary of the protocol

See Table 3 for a summary of the Population, Intervention, Comparison and Outcome (PICO) characteristics of this review.

Table 3

Summary of the protocol (PICO table).

For further details see the review protocol in appendix A.

Methods and processes

Declarations of interest were recorded according to NICE’s conflicts of interest policy.

Effectiveness evidence

Included studies

Four studies were included in this review; two mixed methods studies (Greco 2005 and Thom 2015), one survey (Eskow 2015), and one before and after study (Klag 2016).

The included studies are summarised in Table 2.

One study compared different practice and service delivery models for management of care (Greco 2005), 2 studies compared difference practice and service delivery models for individual case management/multidisciplinary teams/shared decision making (Greco 2005 and Klag 2016), and 3 studies compared different commissioning models for financial arrangements (Eskow 2015, Greco 2005 and Thom 2015).

See the literature search strategy in appendix B and study selection flow chart in appendix C.

Excluded studies

Studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.

Summary of studies included in the effectiveness evidence

Summaries of the studies that were included in this review are presented in Table 2.

Table 4

Summary of included studies.

See the full evidence tables in appendix D. No meta-analysis was conducted (and so there are no forest plots in appendix E).

Summary of the effectiveness evidence

Overall, services receiving designated funding, with designated service managers, with parental involvement in the steering committee and with clear key worker job descriptions had important benefits over those with no designated funding, no designated service manager, no parental involvement in the steering committee and partial or no key worker job descriptions, respectively, for parents’ quality of life. There was also evidence of an important benefit of Evolve Therapeutic Services for community inclusion, reported in terms of reduced problems with peer relationships. There was some evidence of as possible important benefit of joined budgets compared with pooled budgets for reducing the number of parents who reported that their quality of life was fairly or very poor. However, there were no important difference between joint and pooled budgets on other measures of quality of life or on the extent to which needs were met, social inclusion or preparation for adulthood outcomes. There was no important difference in before and after Evolve Therapeutic Services for independent living, reported in terms of problems with self-care and independence, or between access to funds for community home based services and funds reserved for residential services, or designated and non-designated key workers for any of the outcomes reported.

Only four studies were found for this review question and the majority of the evidence was low quality, from single studies and seriously imprecise. Further, none of the included studies reported mortality.

See appendix F for full GRADE tables.

Economic evidence

Included studies

Five economic studies were identified which were relevant to this question (Revill 2013, Cohen 2012, Peter 2011, Gordon 2007, Palfrey 2004).

A single economic search was undertaken for all topics included in the scope of this guideline. See Supplement B for details.

Excluded studies

Economic studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.

Summary of included economic evidence

The systematic search of the economic literature undertaken for the guideline identified:

One Irish study on the costs of a service comprising of home care and respite service, monthly care budget, continuity of care, and liaison (Revill 2013);
One Canadian study on the cost-utility of a co-management model with primary care providers (Cohen 2012);
One Australian study on the costs of ambulatory care coordination model (Peter 2011);
One US study on the costs of a tertiary-primary care partnership model (Gordon 2007);
One US study on the costs of a paediatric alliance for coordinated care model (Palfrey 2004).

See the economic evidence tables in appendix H. See Table 5 for the economic evidence profiles of the included studies.

Table 5

The economic evidence profiles for practice and service delivery models.

Economic model

These review questions were identified as economic priorities, however, no economic modelling was undertaken because there was insufficient effectiveness data.

Evidence statements

Economic

There was evidence from one cost analysis showing that home nursing care and respite services, including care budget, continuity of care, and liaison service led to additional intervention costs in severely disabled children. The overall impact on costs was unclear. This cost analysis was non-comparative and was based on an observational retrospective study (N=30). This evidence is partially applicable to the NICE decision-making context as it was conducted in Ireland and is characterised by potentially serious limitations, including a short time horizon, a mix of local and national unit cost data, and limited statistical analysis.
There was evidence from one cost-utility analysis showing that a management model with primary care providers in children with a known or suspected diagnosis of a complex chronic condition that is associated with a medical fragility was potentially cost effective with an incremental cost effectiveness ratio of $14.2 million per quality-adjusted life year lost. This analysis was based on a pre-post study (N=81). This evidence is partially applicable to the NICE decision-making context as it was conducted in the US and is characterised by potentially serious limitations, including a pre-post study design (i.e. any changes in costs and outcomes could have been due to an overall standard of care improving, the natural history of child’s condition), short time horizon.
There was evidence from one cost analysis showing that ambulatory care coordination (nurse led programme that offered integrated coordination) resulted in cost savings in children with complex care needs. This analysis was based on a pre-post study (N=101). This evidence is partially applicable to the NICE decision-making context as it was conducted in Australia, and is characterised by potentially serious limitations, including a pre-post study design, short time horizon, narrow healthcare payer perspective.
There was mixed evidence from one cost analysis showing that the special needs programme (a tertiary primary care partnership model) resulted in either a cost increase or a cost reduction. This study considered two service structures and cost estimates from two hospitals. One service configuration included a paediatric nurse case manager and a physician. The other configuration included only a paediatric nurse case manager. The analysis showed that a service comprising both a paediatric nurse case manager and a physician resulted in cost savings at both hospitals. The service that included only a paediatric nurse case manager was cost saving in one centre but not the other. This analysis was based on a pre-post study (N=227). This evidence is partially applicable to the NICE decision-making context as it was conducted in the US, and is characterised by potentially serious limitations, including a short time horizon, pre-post study design, too healthcare-focused (i.e. inpatient care only).
There was evidence from one cost analysis showing that paediatric alliance for coordinated care model (comprehensive care at the community level to improve the coordination and communication among practitioners) resulted in additional intervention costs with the overall impact on costs unclear. This cost analysis was based on an observational / interrupted time series study (N=150). This evidence is partially applicable to the NICE decision-making context as it was conducted in the US and is characterised by potentially serious limitations, including consideration of intervention costs only, small sample, local unit cost data.

The committee’s discussion and interpretation of the evidence

The outcomes that matter most

This review question focused on the impact of models for the delivery of joined-up health, social care and education services on person-focused outcomes. The impact of models for the delivery of joined-up health, social care and education services on service-focused outcomes, such as access to services, are included in the review of ‘Commissioning, practice and service delivery models to deliver joined-up care’.

Extent to which health, social care and educational needs are met was prioritised as a critical outcome by the committee as they agreed that joined-up support should better enable services to meet the needs of children and young people and failure to meet needs is likely to have a long term impact on a number of other outcomes, such as health and social related quality of life of both children and young people and their families.

Quality of life, social inclusion, preparation for adulthood and mortality were selected as important outcomes by the committee. Quality of life was selected as an important outcome due to the importance of providing person-centred services. Social inclusion and preparation for adulthood were included as they are core outcomes included within EHC planning and the SEND Code of Practice (2015). Mortality was considered an important outcome as this may be impacted by the extent to which needs are met.

No evidence was found that reported mortality.

The quality of the evidence

The quality of the evidence was assessed with GRADE and was rated as very low to moderate. Concerns about risk of bias ranged from “very serious” to “serious”. The most serious concerns for the mixed methods studies and the survey were biases arising from selection of participants and measurement of outcomes, whereas the most serious concerns for the before and after study were biases arising from random sequence generation, allocation concealment and lack of a separate control group. There was “no serious inconsistency” for all outcomes due to only one study reporting each outcome of interest. There was also “no serious indirectness” for all outcomes. Concerns about imprecision ranged from “very serious” to “no serious imprecision”. Imprecision was due to 95% confidence intervals crossing boundaries for minimally important differences.

Benefits and harms

There was some evidence that having parental involvement in steering committees and advisory groups improved parents’ quality of life. The role of these groups included defining service criteria and developing policies and practices, arranging funding and training, developing performance indicators and monitoring the service, raising awareness and addressing barriers to multi-agency working. There was also qualitative evidence (see evidence report K, sub-theme 6.8) that using a more flexible approach where services are able to meet the individual needs of the child/young person, rather than fitting the child/young person within existing rigid service models would be beneficial and enable services to better meet the needs of children and young people. Therefore, the committee recommended that children and young people and their parents or carers should be involved in planning services, and that commissioners should ensure their participation is effective and their role in planning is clear [1.17.6]. In the committee’s opinion this is aligns with requirements in relevant legislation and guidance in the SEND Code of Practice (2015) about involving children, young people and their parents in planning services.

There was also some evidence that services with clear key worker job descriptions had important benefits over services with partial or no key worker job descriptions. However, there was no evidence of differences between services with and without designated key workers, and there was no evidence comparing services that had key workers with those that did not have key workers. The qualitative evidence highlighted that key workers are seen as important for having a holistic view of the child or young person and coordinating services (see evidence report K, theme 16). The committee agreed that for interagency team working to be effective there needs to be good communication between the interagency team and the child or young person (and their families/carers). The committee’s understanding of the SEND Code of Practice (2015) is that it recommends local authorities should adopt a key working approach to provide a single point of regular and consistent contact to help ensure holistic provision and co-ordination of services and support. This approach would be integral to facilitating efficient communication between the interagency team and the child/young person and their families, but is not currently happening everywhere. Further, the committee agreed, based on their experience, that there is variation in understanding of what key working may involve. Based on the committee’s experience, some of the key working support functions outlined in the SEND Code of Practice (2015) may be difficult to carryout due to differences in organisation and policies across services. Therefore, they recommended that there are information sharing and governance arrangements in place to facilitate the key working support [1.15.12]. The committee also recommended that there is further research into the effectiveness of dedicated key workers.

The committee agreed, based on their experience, that senior involvement is required to ensure that all disabled children and young people with severe complex needs have a practitioners providing them with key working support, as this will not occur naturally and would lead to variation in who does and does not receive key working support. Further, they agreed it was important that practitioners providing key working support have the training, time and resources needed to provide this support, taking into account their other commitments, as otherwise it will not be possible to carry out the key working functions, or the standard of support will not be sufficient to provide a benefit [1.15.3]. The committee also agreed it was important that managers ensure that interagency teams understand what key working support involves so that those providing key working support provide a consistent service that addresses the key functions of the role [1.15.4]. However, the committee acknowledged that the specific functions and the amount of time and resources required to fulfil the key working support role for each child or young person will vary based on their specific needs and family circumstances. In order for it to be possible to provide key working support to everyone who needs it, the committee felt strongly that there needs to be flexibility in the support that is provided and it should be tailored to individual needs [1.15.2]. This recommendation will be particularly relevant to those with characteristics associated with vulnerability and stigma e.g. looked after children status, traveller status, family breakdown, homelessness.

The committee agreed, based on their experience, that there should be early multiagency involvement with children and young people with severe complex needs in order to identify, assess and address their needs. This is consistent with qualitative evidence (see evidence report K, sub-theme 8.1) that there can be a lack of urgency to provide support until children and young people reach crisis points. Therefore, the committee made a recommendation in support of early intervention and multi-agency involvement [1.17.1].

The committee discussed that children and young people may be placed in specialist residential placements that may be some distance from the child or young person’s home. The committee were of the view that for some children and young people, specialist residential placements provide a holistic package of care and support that fully meets the needs of the individual and that this may be the most effective option due to difficulty meeting this level of provision outside of residential placements. However, they were also of the view that some children and young people get placed at a distance to home, not because the provision is best for their needs, but because there are no services available to provide the care they need closer to home, or, they do not meet the eligibility criteria to access these services. In the opinion of the committee, providing care closer to home and within their community would be beneficial for children, young people and their families in terms of improved quality of life and maintaining family and social relationships. Further, the committee were concerned that when children and young people return from residential placements, the local community may not be equipped to meet their needs as they have not built the capacity to do so, or people may fall through the gap as they are not known to local services. The committee therefore agreed, based on their experience, to recommend that when commissioning services, options to provide care and support close to home and within their community should be explored before placing an individual at a distance to the family home [1.17.1]. In addition, the committee agreed, based on their experience and the evidence above regarding lack of intervention until crisis points are reached, that there are a group of children and young people with severe complex needs who end up with residential placements as a result of escalation of their needs due to a lack of early intervention. Therefore, they made a research recommendation to establish the most effective commissioning, practice and service delivery models for enabling children and young people to stay close to home.

The committee agreed, based on their experience, that it is widespread practice for services to be commissioned and developed based on replicating existing services and that this approach does not necessarily consider what the outcomes of such services should be or develop services that meet the needs of the population. The committee agreed that specifying outcomes in contracts should lead to services that are better equipped to meet the needs of disabled children and young people with severe complex needs and, therefore, made a recommendation in support of this [1.17.1]. This recommendation was further supported by qualitative evidence that using a more flexible approach where services are able to meet the individual needs of the child/young person, rather than fitting the child/young person within existing rigid service models would be beneficial (see evidence report K sub-theme 6.8).

The committee discussed that, in their experience, different services often work in silos and may not consider the impact that changes in service structure or processes may have on other services involved in the care of disabled children and young people. For example, services may rely on the results of specific assessments as entry criteria to services and may not be able to determine who should be admitted to a service or intervention if this assessment is discontinued. The committee agreed that these situations can cause delays and lead to gaps in service provision. Therefore, the committee recommended that how services fit together and the impact of changes in one service on another are considered when commissioning services [1.17.1].

The qualitative evidence reviews highlighted that a lack of funding and resources is a barrier to providing services, that there is a lack of appropriate services, particularly post-16 years of age and that decision making for transitions is left too late (see evidence report A, sub-themes 11.4 and 11.5; evidence report K, sub-themes 5.2, 6.4 and 17.1). Further, the committee emphasised that joint planning and commissioning should lead to more effective use of limited resources. Therefore, the committee agreed local authorities and health commissioners should plan how services will be organised once young people turn 18 or transfer into adult services to ensure continuity of support [1.17.2].

The committee noted that there is a joint commissioning duty in the Children and Families Act 2014, between CCGs and Local Authorities. However this is only happening in parts of the system. There is no universally established framework at an organisational level to enable joint working across all 3 sectors to happen. Many of the guideline recommendations emphasise the need for joint working, but services ability to implement these would be limited without the a framework being established at an organisational level. The committee noted that the commissioning duty of CCGs is being absorbed by Integrated Care Systems and therefore the same duty should apply to the relationship between ICSs and Local Authorities. Therefore they recommended that ICSs and Local Authorities should develop a joint commissioning framework [1.18.1].

There is an existing requirement for clinical commissioning groups to develop and maintain Dynamic Support Registers to identify people with a learning disability, autism (or both) who display, or are at risk of developing, behaviour that challenges or mental health conditions who are most likely to be at risk of being admitted to mental health or learning disability hospitals. However the existence of such registers is not widely known about. Therefore the committee made recommendations to raise awareness in this area and to encourage healthcare practitioners to check if children and young people with severe complex needs are on them [1.18.5; 1.18.6]. Including relevant children and young people with severe complex needs on Dynamic Support Registers will help services know which individuals are likely to need additional support. In turn this should facilitate recognition of early signs that might lead to a crisis and enable extra support to be put in place to prevent unnecessary hospitalisation. As Dynamic Support Registers are an existing requirement there should not be any significant resource implications from the recommendation.

There was some evidence that dedicated funding for services, joint budgets and having a designated service manager improved parents’ satisfaction and quality of life. However, this evidence was very limited and related to the provision of key workers only. Further, there was insufficient information in the included papers regarding the exact funding and commissioning arrangements. Therefore, the committee did not think this evidence provided sufficient basis for recommendations and recommended further research into the most effective joint commissioning arrangements for disabled children and young people with severe complex needs.

Cost effectiveness and resource use

Five existing economic studies explored the costs and cost-effectiveness of service arrangements to deliver joined-up education, health and social care services. All studies were non-UK, partially applicable and characterised by potentially serious limitations. As a result, the committee could not draw any conclusion from this evidence or base any recommendations on it.

One UK study on the costs of key worker service (Copps 2007) was identified for evidence review D (Supporting families and carers). The analysis showed that the key worker service costs more to provide than the financial gains. However, under a certain set of assumptions, the key worker service could potentially be cost-saving. It was acknowledged that this study was only partially applicable to the NICE decision-making context because it was unclear from the study’s definition how applicable the population was. Also, this study was characterised by potentially serious limitations. As a result, the committee could not draw any firm conclusions from this evidence.

The recommendations on providing key working support reiterate guidance in the SEND Code of Practice (2015). However, since its introduction, the challenging nature of the environment has meant the guidance on key working support has largely been unimplemented and key workers do not have enough protected time to provide these functions adequately.

The committee discussed that in their opinion it would be preferable for key working support to be provided by a dedicated key worker role, with a separate job description and role specification, rather than key working functions being allocated to members of the team on top of their existing roles. Their view was that providing key working support effectively can be time-consuming and the person undertaking it needs to have the time and resources for this.

The committee explained that provision of key working support includes benefits to families and carers, e.g. if key workers do the coordination, families do not have to take time off their other commitments, including care for siblings and time off work and increases their ability to manage at home, avoiding the cost of expensive care placements. Due to the lack of key working support, there are routine reports of communication and coordination failures (i.e. different services not feeding into each other), leading to inefficient processes, missed meetings, and poor information provision. Key working support counteracts this considerably and ensure coordinated and seamless care, joined-up outcomes, and reduction in complaints. The committee was of the view that the value of benefits potentially offsets any costs associated with providing key working support. However, they acknowledged that there was no evidence of effectiveness or cost-effectiveness to justify a specific key worker post.

Since the recommendations on key working support reiterate guidance in the SEND Code of Practice (2015) they should not have a significant resource impact. However, practice is variable, and the committee acknowledged that the implementation of these recommendations might require additional resources for services with sub-optimal practices. For example, services will have to plan their resources more effectively to enable key working support to be provided and staff supported to do so.

There is currently no dedicated/bespoke training for people who will be providing key working support. The committee explained that the essential skills required to provide key working support involve project management, negotiating and communicating with people, and usually involve component-based training. Training in these components is already available and accessible to support individuals providing key working support to develop the specific skills they need. Therefore, this recommendation is not expected to have a significant resource impact.

The committee discussed the recommendation around focussing on early multiagency involvement when commissioning services. They noted that there may be some resource implications associated with facilitating early involvement. However, savings associated with children and young people and their families not reaching a crisis / preventing emergency placements would likely outweigh any additional costs.

Specifying outcomes in contracts is based on the guidance in the SEND Code of Practice (2015) and the recommendation is not suggesting a move from block contracts as this would be unfeasible. There is still a widespread practice where commissioners are procuring services on a block contract basis without specifying what outcomes services should be achieving, and as a result, it makes it easy for services to degrade. The committee explained that block arrangements do not limit commissioners describing the population’s needs, including individual needs (within block contracts). The recommendation makes it more explicit that outcomes can and should be specified within existing commissioning frameworks. This recommendation has a potential to result in more responsive and efficient services.

The committee discussed issues around funding, and organising services for young people once they turn 18, to ensure continuity of support. The committee explained that the entire public sector is under financial constraints to provide services and resources to meet both individual and population needs. The lack of communication between education, health and social care during the transition period causes care delays and results in poor outcomes. This issue will become more significant in future due to a growing population and people with disabilities and severe complex needs living longer. The committee agreed that sectors coming together, planning, using joint funding / commissioning, partnership working would create an opportunity for efficiencies in terms of maximising the needs met from available funds. Therefore, any additional costs to local authorities and health commissioners associated with planning / setting up frameworks for joint working to ensure continuity of support during the transition period would be offset by efficiency gains and better outcomes.

The committee discussed commissioning changes being made in services, (e.g. changes in the provision, model) in a vacuum without considering broader knock-on impacts. Often reconfiguration of services is undertaken within that sector and there is no comprehensive impact assessment across all sectors. Local authorities have duties around joint strategic needs assessment, but not in terms of integrated service delivery. Services can change rapidly, which can have an enormous impact on other services, particularly for the delivery of integrated services. It can result in unintended consequences, e.g. care gaps, with substantial financial consequences. The committee agreed that there needs to be consideration of how each service fits in and works with other services and how commissioning changes in one may impact other services and the ability to provide integrated care and support. Such practices should encourage a good way of working and prevent unintended costly consequences due to care gaps. It could also help with the efficiencies and result in other cost-savings, e.g. health and local authorities engaging in joint recruitment.

The committee discussed the recommendation for Integrated Care Systems (ICSs) and local authorities to develop joint-commissioning frameworks. Integrated care systems are replacing clinical commissioning groups and may need to work collaboratively with local authorities where they are not already doing so, which potentially could have some resource implications. Joint commissioning of services is currently only being done for particular provisions, for example some patient advice and support services, some bespoke packages for post-16s, and some short breaks. Developing a joint commissioning framework would be a change in practice. Given the integral part local authorities play in the identification, assessment, and care pathways for children and young people with disabilities and severe complex needs, joint working (facilitated by a joint commissioning framework) is essential to bring meaningful improvements in the care of these children and young people.

A joint commissioning framework across education, health, and social care will enable collaborative working, coordination, consistency, and efficiencies for all parties involved. It will enable holistic care and a less fragmented experience. It will also allow practitioners to deliver person-centred care that addresses their needs across the 3 sectors, and ultimately, it will result in better care and support for the person. For example, better joined-up working will lead to early identification of need (before they reach a crisis). This may prevent expensive out of area placements, and prolonged hospital stays. It improves health outcomes because the right care can be initiated early, i.e. delays in care exacerbate problems. This would also improve educational outcomes by getting the right support for engaging in learning earlier.

Education, health and social care services will have to make their processes more joined-up and coordinated. They may need more joint and collaborative meetings. Commissioners will need to establish frameworks for collaborative and cooperative working.

Recommendations supported by this evidence review

References – included studies

Effectiveness

Craston 2013
Craston M., Thom, G., Spivack, R., Lambert, C., Yorath, F., Purdon, S., Bryson, C., Sheikh, S., Smith, L., Evaluation of the SEND pathfinder programme: Impact research brief, London: Department for Education, 2013. Available at: www.gov.uk/government/publications
Eskow 2015
Eskow, K. G., Chasson, G. S., Summers, J. A., A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program, Journal of Autism and Developmental Disorders, 45, 626–35, 2015 [PMC free article: PMC4339692] [PubMed: 25183656]
Greco 2005
Greco, V., Sloper, P., Webb, R., Beecham, J., An exploration of different models of multi-agency partnerships in key worker services for disabled children: effectiveness and costs, London: Department for Education and Skills, 2005. Available at: https://www.york.ac.uk/inst/spru/pubs/pdf/keyworker.pdf
Klag 2016
Klag, S., Fox, T., Martin, G., Eadie, K., Bergh, W., Keegan, F., Turner, D., Raeburn, N., Evolve Therapeutic Services: A 5-year outcome study of children and young people in out-of-home care with complex and extreme behavioural and mental health problems, Children and Youth Services Review, 69, 268–274, 2016
Thom 2015
Thom G., Lupton, K., Craston, M., Purdon, S., Bryson, C., Lambert, C., James, N., Knibbs, S., Oliver, D., Smith, L., Vanson, T., The Special Educational Needs and Disability Pathfinder Programme evaluation: Final impact research report, London: Department for Education, 2015. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/448157/RB471_SEND_pathfinder_programme_final_report_brief.pdf

Economic

Cohen 2012
Cohen, E., Lacombe-Duncan, A., Spalding, K., MacInnis, J., Nicholas, D., Narayanan, U. G., et al., Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC health services research, 12, 366, 2012 [PMC free article: PMC3529108] [PubMed: 23088792]
Gordon 2007
Gordon, J. B., Colby, H. H., Bartelt, T., Jablonski, D., Krauthoefer, M. L., & Havens, P., A tertiary care–primary care partnership model for medically complex and fragile children and youth with special health care needs. Archives of pediatrics & adolescent medicine, 161, 937–44, 2007 [PubMed: 17909136]
Palfrey 2004
Palfrey, J. S., Sofis, L. A., Davidson, E. J., Liu, J., Freeman, L., & Ganz, M. L., The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics, 113, 1507–16, 2004 [PubMed: 15121919]
Peter 2011
Peter, S., Chaney, G., Zappia, T., Van Veldhuisen, C., Pereira, S., & Santamaria, N., Care coordination for children with complex care needs significantly reduces hospital utilization. Journal for Specialists in Pediatric Nursing, 16, 305–12, 2011 [PubMed: 21951356]
Revill 2013
Revill, P., Ryan, P., McNamara, A., & Normand, C., A cost and outcomes analysis of alternative models of care for young children with severe disabilities in Ireland. Alter, 7, 260–74, 2013

Other

Department for Education and Department for Health 2015
Department for Education and Department for Health, Special educational needs and disability code of practice: 0 to 25 years. Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf [Accessed 05/11/2020]

Appendices

Appendix A. Review protocols

Review protocol for review question: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs? (PDF, 229K)

Review protocol for review question: What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs? (PDF, 219K)

Appendix B. Literature search strategies

Literature search strategies for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Please note that a single search was run to cover both review questions

Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations

Download PDF (213K)

Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)

Download PDF (210K)

Database: Database of Abstracts of Reviews of Effects (DARE)

Download PDF (198K)

Database: Health Technology Abstracts (HTA)

Download PDF (200K)

Databases: Applied Social Sciences Index & Abstracts (ASSIA); Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)

Download PDF (186K)

Database: British Education Index

Download PDF (194K)

Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)

Download PDF (188K)

Database: Social Sciences Citation Index (SSCI)

Download PDF (193K)

Database: Social Care Online

Download PDF (172K)

Appendix C. Effectiveness evidence study selection

Study selection for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Download PDF (134K)

Appendix D. Effectiveness evidence

Evidence tables for review question: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs? (PDF, 206K)

Evidence tables for review question: What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs? (PDF, 213K)

Appendix E. Forest plots

Forest plots for review question: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

Download PDF (115K)

Forest plots for review question: What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

No meta-analysis was conducted for this review question and so there are no forest plots.

Appendix F. GRADE tables

GRADE tables for review question: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs? (PDF, 228K)

GRADE tables for review question: What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs? (PDF, 246K)

Appendix G. Economic evidence study selection

Economic evidence study selection for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

One global search was undertaken – please see Supplement B for details on study selection.

Appendix H. Economic evidence tables

Economic evidence tables for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Download PDF (231K)

Appendix I. Economic model

Economic model for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

No economic analyses were conducted for these review questions.

Appendix J. Excluded studies

Excluded studies for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Excluded effectiveness studies

Table 25

Excluded studies and reasons for their exclusion.

Excluded economic studies

See Supplement B for the list of excluded studies across all reviews.

Appendix K. Research recommendations – full details

Research recommendations for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Download PDF (190K)

Final

Evidence reviews

These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK579715PMID: 35471799

Table 1Summary of the protocol (PICO table)

Population	Disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.
Intervention	Any commissioning, practice and service delivery models (approaches, configurations of resources and services) delivering 2 or more of health, social care and education services. For example: Practice and service delivery models Delivery arrangements: Who provides care and how the healthcare workforce is managed: - Role-expansion/ task shifting Coordination of care and management of care processes: - Individual case (service user) management (models responsive to individual needs) - Communication / referral between providers - Shared care - Shared decision making - Multidisciplinary teams - Multiagency assessment tool for service requirements (e.g. West Sussex tool) Commissioning models: Delivery arrangements: Coordination of care and management of care processes: - Integration (consolidation) of services Financial arrangements: Mechanisms for the payment of health services: - Joint/pooled budgets Governance arrangements: Authority and accountability for organisations: - Joint commissioning teams - Strategic oversight of commissioning
Comparison	Any other joined-up commissioning, practice and service delivery models Separate health, social and education services (without joined-up working)
Outcome	Critical Service user satisfaction (child or young person and parent or carer) (e.g., as measured by validated scales or assisted communication aids such as talking mats or ‘it’s all about me’) Access to services: Local availability (e.g., time/distance travelled to access services) Waiting times for services Important Joined-up support: Cross-sector planning Effectiveness of information sharing Use of health, social care and education services

Table 2Summary of included studies

Study

Population

Intervention

Comparison

Outcomes

Comments

Craston 2013

Mixed methods

Intervention

Families receiving services from SEND pathfinder sites.

Comparator

No information reported.

SEND pathfinder programme (n=237)

Grant funded collaboration between local authorities, NHS, colleges and schools, voluntary and community sectors, and parent-carer groups. Aimed to reform the statutory SEN assessment and statement framework.

Comparator (n=226)

No information reported.

Service user satisfaction

Brief report of SEND pathfinder programme. Final impact report presented in Thom 2015. Both studies retained as samples are non-overlapping.

Greco 2005

Mixed methods

Families who were using 7 case study key worker services.

Key worker service A

One full-time designated key worker is funded by Children First and health, education and social services provide part-time non-designated key workers.

Key worker service B

Service and designated key workers funded by health, education and social services.

Key worker service C

At the time of the survey, the service was funded by a Children’s services grant but it has received funding/designated key workers from Health Action Zone, social services and education.

Key worker service D

At the time of the survey, 50% of the funding comes from the primary care trust; social services and education are invoiced retrospectively. Non-designated key workers provided by various agencies.

Key worker service E

Service managers funded jointly (50:50) by primary care trust and local authority. Key workers are seconded by different agencies.

Key worker service F

Non-designated key workers are provided by multiple agencies within existing resources/financial arrangements.

Key worker service G

No dedicated budget for the scheme; non-designated key workers providing service as part of their existing roles.

Service user satisfaction

No comparative data was reported in sufficient detail for analysis based on transition service. Additional comparative data was reported comparing specific aspects of transition across services (e.g., whether or not services had designated key workers).

Thom 2016

Mixed methods

Intervention

Families who had received an EHC plan between August 2013 and April 2014 from one of 30 SEND pathfinder sites.

Comparator

Families who had a SEN statement/post −16 equivalent from one of 24 pathfinder areas, before the introduction of the SEND pathfinder programme.

SEND pathfinder programme (n=698)

Comparator (n=1000)

No information reported.

Service user satisfaction
Access to services:
- Waiting times for services
Joined-up support:
- Cross-sector planning
- Effectiveness of information sharing

Final impact report of SEND pathfinder programme. Brief report presented in Craton 2013. Both studies retained as samples are non-overlapping.

: EHC: education, health and care; NHS: National Health Service; SEN: special educational needs; SEND: special educational needs and disability

Table 3Summary of the protocol (PICO table)

Population	Disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.
Intervention	Any commissioning, practice and service delivery models (approaches, configurations of resources and services) delivering 2 or more of health, social care and education services. For example: Practice and service delivery models Delivery arrangements: Who provides care and how the healthcare workforce is managed: - Role-expansion/ task shifting Coordination of care and management of care processes: - Individual case (service user) management (models responsive to individual needs) - Communication / referral between providers - Shared care - Shared decision making - Multidisciplinary teams - Multiagency assessment tool for service requirements (e.g. West Sussex tool) Commissioning models: Delivery arrangements: Coordination of care and management of care processes: - Integration (consolidation) of services Financial arrangements: Mechanisms for the payment of health services: - Joint/pooled budgets Governance arrangements: Authority and accountability for organisations: - Joint commissioning teams - Strategic oversight of commissioning
Comparison	Any other joined-up commissioning, practice and service delivery models Separate health, social and education services (without joined-up working)
Outcome	Critical Extent to which needs are met (including changing and evolving needs) Health needs Social care needs Educational needs Important Quality of life Social inclusion Preparation for adulthood Mortality

Table 4Summary of included studies

Study	Population	Intervention	Comparison	Outcomes	Comments
Eskow 2015 Survey USA	Families receiving the Maryland waiver for autistic spectrum disorders, or on the waitlist for the waiver.	ASD waiver (n=130) Home and Community-Based Service (HCBS) Waiver for children with ASD that allows access to Medicaid funds for services in less restrictive environments.	Waitlist (n=130) Medicaid funds are normally reserved for residential facilities. Waitlist families must have been receiving minimal waiver-like (HCBS) services.	Quality of life Preparation for adulthood	Outcomes measured in terms of improvement in the last 12 months.
Greco 2005 Mixed methods UK	Families who were using 7 case study key worker services.	Key worker service A One full-time designated key worker is funded by Children First and health, education and social services provide part-time non-designated key workers. Key worker service B Service and designated key workers funded by health, education and social services. Key worker service C At the time of the survey, the service was funded by a Children’s services grant but it has received funding/designated key workers from Health Action Zone, social services and education. Key worker service D At the time of the survey, 50% of the funding comes from the primary care trust; social services and education are invoiced retrospectively. Non-designated key workers provided by various agencies. Key worker service E Service managers funded jointly (50:50) by primary care trust and local authority. Key workers are seconded by different agencies. Key worker service F Non-designated key workers are provided by multiple agencies within existing resources/financial arrangements. Key worker service G No dedicated budget for the scheme; non-designated key workers providing service as part of their existing roles.		Quality of life	No comparative data was reported in sufficient detail for analysis based on transition service. Additional comparative data was reported comparing specific aspects of transition across services (e.g., whether or not services had designated key workers).
Klag 2016 Before and after study Australia	Children aged <18 years, in out of home care, presenting with severe and/or complex psychological and/or behavioural problems.	Evolve Therapeutic Services (n=664) Tertiary level collaborative wrap around mental health services embedded within Evolve Interagency Services – an interagency partnership between Queensland Health, the Department of Communities, Child Safety & Disability Services, and the Department of Education, Training & Employment.	Before Evolve Therapeutic Services (n=664) No information reported.	Preparation for adulthood	Mean program duration 19.2 months (SD 11.1).
Thom 2016 Mixed methods UK	Intervention Families who had received an EHC plan between August 2013 and April 2014 from one of 30 SEND pathfinder sites. Comparator Families who had a SEN statement/post-16 equivalent from one of 24 pathfinder areas, before the introduction of the SEND pathfinder programme.	SEND pathfinder programme (n=698) Grant funded collaboration between local authorities, NHS, colleges and schools, voluntary and community sectors, and parent-carer groups. Aimed to reform the statutory SEN assessment and statement framework.	Comparator (n=1000) No information reported.	Extent to which needs are met Health needs Social care needs Educational needs Quality of life Social inclusion Preparation for adulthood	None

: ASD: autistic spectrum disorder; EHC: education, health and care; HCBS: home and community-based service; NHS: National Health Service; SEN: special educational needs; SEND: special educational needs and disability; SD: standard deviation

Table 5The economic evidence profiles for practice and service delivery models

Study and country	Limitations	Applicability	Other comments	Costs/Incremental costs	Effects /Incremental effects	Results/ICER	Uncertainty
Revill 2013 Ireland	Potentially serious limitations¹	Partially applicable²	- Cost analysis - Intervention: Home nursing care and respite services, care budget, continuity of care, liaison service - Comparator: NA, i.e. non-comparative - Time horizon: 1 year	€41,148 per participant (€16,267 provider costs, €22,261 indirect family costs, €2,620 direct family costs)	NA	NA	Mean cost per participant: Including hospital inpatient costs: €56,926 Excluding indirect costs: €18,887
Cohen 2012 Canada	Potentially serious limitations³	Partially applicable⁴	- Cost-utility analysis - Intervention: Comanagement model with existing primary care providers (i.e. community paediatricians work together with a tertiary care affiliated nurse practitioners, focus on care coordination, care plan, community based therapists and professionals) - Comparator: Uncoordinated services (not defined) - Time horizon: 12 months - Outcome measure: QALYs (calculated by the NGA team); CPCHILD; PedsQL;	Per participant: −$12,840 (mean) −$1,356 (median)	QALYs −0.0009 (mean) 0.005 (median) CPCHILD 0.2 (mean) −0.9 (median) 0.0 (PedsQL) Significant improvements on MPOC enabling and partnership, coordinated and comprehensive care, and respectful and supportive care domains	−$14.2 million per QALY lost using mean costs and QALYs Intervention dominant using median costs and QALYs Intervention dominant (mean costs and mean CPCHILD scores) ICER of −$1,506 per CPCHILD score lost using median costs and median CPCHILD scores Intervention preferred on the basis of lower costs when using PedsQL Intervention dominant using MPOC enabling and partnership, coordinated and comprehensive care, and respectful and supportive care domains	Mean cost difference was significant, p<0.007 PedsQL no significant differences MPOC, Enabling and partnership (p=0.01), Coordinated and Comprehensive Care (p=0.004), Respectful and Supportive Care (p=0.01)
Peter 2011 Australia	Potentially serious limitations⁵	Partially applicable⁶	- Cost analysis - Intervention: Ambulatory care coordination (nurse led integrated care coordination) - Comparator: undefined pre-service introducton care - Time horizon: 10 months	−$19,228 per participant (post vs. pre)	NA	Coordination cost saving	None
Gordon 2007 US	Potentially serious limitations⁷	Partially applicable⁸	- Cost analysis - Intervention: Special needs programme (SNP, tertiary care–primary care partnership) PNCM-MD group (SNP paediatric nurse case manager and SNP physician) PNCM group (SNP paediatric nurse case manager only) - Comparator: pre-enrolment care (not defined) - Time horizon: one day Children’s Hospital of Wisconsin (CHW) and Medical College of Wisconsin (MCW)	PNCM-MD group −$604 (CHW) −$36 (MCW) PNCM group −$19 (CHW) $32 (MCW)	NA	PNCM-MD model was cost saving at both centres; PNCM model was cost saving at one centre but not the other	PNCM-MD The reduction in post-enrolment median daily charges was significant at CHW centre (p<0.01) but not MCW centre (p=0.78). PNCM The reduction in post-enrolment median daily charges was significant at CHW centre (p=0.002); and an increase was also significant at MCW centre (p=0.004).
Palfrey 2004 US	Potentially serious limitations⁹	Partially applicable¹⁰	- Cost analysis - Intervention: Paediatric Alliance for Coordinated Care (a designated paediatric nurse practitioner, consultation from a local parent of a child with special healthcare needs, an individualised health plan, medical and nursing education, and expedited referrals and communication with specialists and hospital-based personnel) - Comparator: NA, i.e. non-comparative cost analysis - Time horizon: 2 years	$400 (annual cost per participant)	NA	NA	None

: Abbreviations: CHW: Children’s Hospital of Wisconsin; CPCHILD: The Caregiver Priorities & Child Health Index of Life with Disabilities; ICER: incremental cost effectiveness ratio; MCW: Medical College of Wisconsin; MPOC: Measures of Processes of Care; NA: not applicable; NR: not reported; PedsQL: Pediatric Quality of Life Inventory; PNCM: Pediatric nurse case manager; PNCM-MD: Pediatric nurse case manager and Special needs physician; QALY: Quality Adjusted Life Year; SNP: Special needs physician

1: Short time horizon, based on small retrospective study (n=30), mix of local and national unit cost data, limited statistical analysis

2: Non-UK study

3: Pre-, post-study design (i.e. any changes in costs and outcomes could have been due to overall standard of care improving, the natural history of child’s condition, short time horizon, healthcare centred, unclear source of unit cost data (likely local)

4: Non-UK study; healthcare orientated although includes some community (social care?) care; variety of outcomes; QALYs were not reported but it was possible to estimate form SF-36 measure

5: Pre-, post-study design (i.e. cost savings could have been due to improvement in clinical conditions over time), short time horizon, narrow healthcare payer perspective (inpatient care only), local unit cost data

6: Non UK study

7: Short time horizon, pre-, post-study design (cost savings due to improvement in clinical conditions over time, healthcare focused (i.e. inpatient care only)

8: Non-UK study

9: Intervention costs only, small observational study, local unit cost data

10: Non-UK study

Table 25Excluded studies and reasons for their exclusion

Study	Reason for Exclusion
Adams, R. C., Tapia, C., Murphy, N. A., Norwood Jr, K. W., Burke, R. T., Friedman, S. L., Houtrow, A. J., Kalichman, M. A., Kuo, D. Z., Levy, S. E., Turchi, R. M., Wiley, S. E., Bridgemohan, C., Peacock, G., Strickland, B., Wells, N., Wiznitzer, M., Mucha, S., Early intervention, IDEA part C services, and the medical home: Collaboration for best practice and best outcomes, Pediatrics, 132, e1073–e1088, 2013 [PubMed: 24082001]	Publication type: Narrative review/overview of model
Alexander, J., Callahan, B., King, A., King, J., Hooper, S., Bartel, S., North Carolina’s TBI project ACCESS. Assuring coordinated care, education, and support for survivors of pediatric brain injury, North Carolina medical journal, 62, 359–63, 2001 [PubMed: 11729466]	Publication type: Overview of model implementation, barriers and recommendations. No data on effectiveness
Alonso, M., Escorcia, C., Franco, I., Ayuso, V., Santandreu, A., Molt, O. E., Sanchis, C., Domenech, M., CaNadas, M., The role of the physical therapist in the familycentered model justified by ICF, Developmental Medicine and Child Neurology, 55, 48, 2013	Publication type: Conference abstract
Anderson, L., Ringle, J. L., Ingram, S. D., Ross, J. R., Thompson, R. W., Care Coordination Services: A Description of an Alternative Service Model for At-Risk Families, Journal of Evidence-Informed Social Work, 14, 217–228, 2017 [PubMed: 28682180]	Population: Children referred for poor anger control or school behaviour problems
Arya, Saroj, Sen, Arya Raj Madhavan Madhavan Malin Mendis Otoole Rangaswami Reddy Thornburn, Delivery of services through itinerant service model, Journal of Personality and Clinical Studies, 18, 67–72, 2002	Non-OECD country: India
Bachmann, M. O., O’Brien, M., Husbands, C., Shreeve, A., Jones, N., Watson, J., Reading, R., Thoburn, J., Mugford, M., Brandon, M., Franklin, A., Harvey, I., Haynes, R., Lanyon, C., Lorgelly, P., Lu, Y., Norris, N., Sinclair, R., Sykes, I., Walker, R., Integrating children’s services in England: National evaluation of children’s trusts, Child: care, health and development, 35, 257–265, 2009 [PubMed: 19228159]	Study design and outcomes: Non-comparative. Description of services and qualitative experiences
Bachmann, M. O., Reading, R., Husbands, C., O’Brien, M., Thoburn, J., Shemilt, I., Watson, J., Jones, N., Haynes, R., Mugford, M., Brandon, M., Harvey, I., Lorgelly, P., Lu, Y., Norris, N., Shreeve, A., Sinclair, R., Sykes, I., Walker, R., What are children’s trusts? Early findings from a national survey, Child: Care, Health and Development, 32, 137–146, 2006 [PubMed: 16441848]	Study design and outcomes: Non-comparative. Description of services
Botha, Johan, Kourkoutas, Elias, A Community of Practice as an Inclusive Model to Support Children with Social, Emotional and Behavioural Difficulties in School Contexts, International Journal of Inclusive Education, 20, 784–799, 2016	Study design: Qualitative
Brahmbhatt, K., Integrating care across the subspecialty pediatric continuum: Experience from the university of California, San Francisco in pediatric epilepsy, Journal of the American Academy of Child and Adolescent Psychiatry, 56, S17, 2017	Publication type: Conference abstract
Brosseau-Lapre, F., Greenwell, T., Innovative Service Delivery Models for Serving Children with Speech Sound Disorders, Seminars in Speech and Language, 40, 113–123, 2019 [PubMed: 30795022]	Publication type and outcomes: Overview of models and recommendations for implementation. No data on effectiveness
Brown Helen, et al.,, What works in the delivery of independent support? Final report from the national evaluation of the Independent Support Programme 2014 - 2016, 93, 2017	Study design and outcomes. Non-comparative. Descriptive and qualitative outcomes
Bruce, S. M., Bashinski, S. M., The Trifocus Framework and Interprofessional Collaborative Practice in Severe Disabilities, American Journal of Speech-Language Pathology, 26, 162–180, 2017 [PubMed: 28514472]	Publication type: Narrative review
Bruns, E. J., Duong, M. T., Lyon, A. R., Pullmann, M. D., Cook, C. R., Cheney, D., McCauley, E., Fostering SMART partnerships to develop an effective continuum of behavioral health services and supports in schools, American Journal of Orthopsychiatry, 86, 156–170, 2016 [PMC free article: PMC4788041] [PubMed: 26963185]	Publication type: Overview of service delivery framework and recommendations. No data on effectiveness
Bryant Ben, Swords Beth, Isos, Partnership, Developing and sustaining an effective local SEND system: a practical guide for councils and partners, 51, 2018	Publication type: Guidance. No data on effectiveness
Butler, Michelle, et al, Using the voluntary sector to provide services to children and families with complex needs as an alternative to social work services: what are the benefits and risks?, 47, 2017	Outcomes: Narrative/thematic summary of results. No data on effectiveness
Butler, Michelle, et al, Supporting children and families with complex needs: an exploration of the risks and benefits of voluntary sector service provision as an alternative to statutory services, 69, 2019	Outcomes: Narrative/thematic summary of results. No data on effectiveness
Cady, R. G., Looman, W. S., Lindeke, L. L., LaPlante, B., Lundeen, B., Seeley, A., Kautto, M. E., Pediatric Care Coordination: Lessons Learned and Future Priorities, Online Journal of Issues in NursingOnline J Issues Nurs, 20, 3, 2015 [PubMed: 26882512]	Publication type: Overview of models for care coordination and plan for evaluation. No data on effectiveness
Campbell, Denise, Garg, Pankaj, Ong, Natalie, Tomsic, Gail, Silove, Natalie, An innovative model of care for meeting the health and social needs of children and young people with intellectual disability, International Journal of Integrated Care (IJIC), 19, 1–2, 2019	Publication type: Conference abstract
Care Quality, Commission, Health care for disabled children and young people: a review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England: special review, 48p., 2012	Outcomes: No comparative data presented for outcomes of interest
Carrey, N. J., Curran, J. A., Greene, R., Nolan, A., McLuckie, A., Embedding mental health interventions in early childhood education systems for at-risk preschoolers: An evidence to policy realist review, Systematic Reviews, 3, 84, 2014 [PMC free article: PMC4127568] [PubMed: 25073533]	Publication type: Protocol for realist review
Carter, M., Stephenson, J., Clark, T., Costley, D., Martin, J., Williams, K., Bruck, S., Davies, L., Browne, L., Sweller, N., A comparison of two models of support for students with autism spectrum disorder in school and predictors of school success, Research in Autism Spectrum Disorders, 68, 101452, 2019	Insufficient presentation of results
Centre For Effective, Services, On the right track: implementation. Learning from investment in prevention and early intervention in Ireland, 18, 2019	Publication type: Guidance/overview of implementation processes. No data on effectiveness
Chaplin, Eddie, Better services for people with an autistic spectrum disorder, Advances in Mental Health and Learning Disabilities, 1, 27–28, 2007	Publication type: Commentary
Chatenoud, C., Villeneuve, M., Dionne, C., Minnes, P., Parent collaboration with educators and health professionals during preschool transition, Journal of Intellectual Disability Research, 56, 740, 2012	Publication type: Conference abstract
Chenoweth, B., Leitner, R., Lenroot, R., Metro-Regional intellectual Disability Network: A partnership model for integrated health services for people with intellectual disability in regional and rural NSW, Journal of Intellectual Disability Research, 56, 756, 2012	Publication type: Conference abstract
Children’S Improvement, Board, Commissioning for families with complex needs, 33p., 2013	Publication type: Commissioning guide. No data on effectiveness
Children’S Services Development, Group, In it together: achieving quality outcomes for young people with complex needs, 25p., 2009	Publication type and outcomes: Examples of good practice and case studies. No data on effectiveness
Chu, S., Reynolds, F., Occupational therapy for children with attention deficit hyperactivity disorder (ADHD), Part 2: A multicentre evaluation of an assessment and treatment package, British Journal of Occupational Therapy, 70, 439–448, 2007	Outcomes: No comparative data provided for outcomes of interest
Chu, Sidney, Reynolds, Frances, Occupational therapy for children with Attention Deficit Hyperactivity Disorder (ADHD), Part 1: a delineation model of practice, British Journal of Occupational Therapy, 70, 372–383, 2007	Publication: Overview of model. No data on effectiveness
Cirrin, F. M., Schooling, T. L., Nelson, N. W., Diehl, S. F., Flynn, P. F., Staskowski, M., Torrey, T. Z., Adamczyk, D. F., Evidence-based systematic review: Effects of different service delivery models on communication outcomes for elementary school-age children, Language, Speech, and Hearing Services in Schools, 41, 233–264, 2010 [PubMed: 20421615]	Population: Not limited to children and young people with severe complex needs
Dang, K., Bent, S., Lawton, B., Warren, T., Widjaja, F., McDonald, M. G., Breard, M., O’Keefe, W., Hendren, R. L., Integrating autism care through a school-based intervention model: A pilot study, Journal of Clinical Medicine, 6 (10) (no pagination), 2017 [PMC free article: PMC5664012] [PubMed: 29048365]	Insufficient presentation of results
Dang, M. T., Warrington, D., Tung, T., Baker, D., Pan, R. J., A school-based approach to early identification and management of students with ADHD, The Journal of school nursing : the official publication of the National Association of School Nurses, 23, 2–12, 2007 [PubMed: 17253889]	Publication type: Overview of framework. No data on effectiveness
Dodge, Nancy, Keenan, Sandra, Lattanzi, Theresa, Strengthening the capacity of schools and communities to serve students with serious emotional disturbance, Journal of Child and Family Studies, 11, 23–34, 2002	Publication type: Overview of service development. No data on effectiveness
Easton, C., et al.,, Supporting families with complex needs: findings from LARC4: report for the Local Authority Research Consortium (LARC), 42p., 2012	Outcomes: Qualitative, descriptive and costs. No data on effectiveness
Ebbels, S. H., McCartney, E., Slonims, V., Dockrell, J. E., Norbury, C. F., Evidence-based pathways to intervention for children with language disorders, International journal of language & communication disorders, 54, 3–19, 2019 [PubMed: 29696726]	Publication type: Discussion/narrative review. No effectiveness data presented
El Aissati, D., Jackson, C., Birmingham early intervention service redesign: Improving recovery and social outcomes for young people with psychosis, Early Intervention in Psychiatry, 6, 86, 2012	Publication type: Conference abstract
Erickson, C. D., Splett, P. L., Mullett, S. S., Heiman, M. B., The healthy learner model for student chronic condition management--part I, The Journal of school nursing : the official publication of the National Association of School Nurses, 22, 310–318, 2006 [PubMed: 17121441]	Publication type: Overview of model development and implementation. No data on effectiveness
Eskow, Karen Goldrich, Summers, Jean Ann, Chasson, Gregory S., Mitchell, Renae, Act, Adams Angell Baio Barnard Bartels Benjamini Billingsley Blue-Banning Brookman-Frazee Burke Cheak-Zamora Claire Cohen Constantino Davern Davis Dempsey Dunst Enders Epley Eskow Eskow Fereday Hayes Hoffman Karst Kovacs Markow Matson McWilliam Merryman Miller Moh Olmstead Poston Reiter Renty Ruble Ruble Schopler Selya Starr Summers Summers Timberlake Turnbull Turnbull Turnbull Turnbull Verhoeven Warfield Whitaker Winton Zablotsky Zionts, The association between family-teacher partnership satisfaction and outcomes of academic progress and quality of life for children/youth with autism, Journal of Policy and Practice in Intellectual Disabilities, 15, 16–25, 2018	Sample: Subset of population reported in Eskow 2015
Fitzmaurice, Eimear, Richmond, Janet E., An Investigation of Service Providers’ understanding, perspectives and implementations of the Transdisciplinary model in Early Intervention settings for Children with Disabilities, Internet Journal of Allied Health Sciences & Practice, 15, 1–12, 2017	Outcomes: No data on effectiveness presented
Frey, A. J., Lingo, A., Michael Nelson, C., Positive behavior support: A call for leadership, Children and Schools, 30, 5–14, 2008	Population and intervention: Implemented at the school/population level. Not limited to disabled children and young people with severe complex needs
Gaines, R., Missiuna, C., Egan, M., McLean, J., Educational outreach and collaborative care enhances physician’s perceived knowledge about Developmental Coordination Disorder, BMC Health Services Research, 8, 21, 2008 [PMC free article: PMC2254381] [PubMed: 18218082]	Intervention: Collaborative care within healthcare only
Gaines, Robin, Missiuna, Cheryl, Egan, Mary, McLean, Jennifer, Gaines, Hamilton Missiuna Missiuna Missiuna Polatajko, Interprofessional care in the management of a chronic childhood condition: Developmental coordination disorder, Journal of Interprofessional Care, 22, 552–555, 2008 [PubMed: 24567970]	Publication type: Overview of the development of a service delivery model. No data on effectiveness
Giroux, Catherine M., Corkett, Julie K., Alquraini, Canter Cohen Cunningham Giacomini Graham Harris Kearney, Interprofessional collaboration for children with special healthcare needs: A review of effective education integration, Journal of Sociology and Social Welfare, 43, 55–67, 2016	Publication type: Narrative review
Golos, Anat, Sarid, Miri, Weill, Michal, Weintraub, Naomi, Efficacy of an early intervention program for at-risk preschool boys: a two-group control study, The American journal of occupational therapy : official publication of the American Occupational Therapy Association, 65, 400–8, 2011 [PubMed: 21834455]	Population and outcomes: Children with or at risk of developmental delay. May not have had needs in all three areas. No relevant outcomes reported
Gordon, J. B., Colby, H. H., Bartelt, T., Jablonski, D., Krauthoefer, M. L., Havens, P., A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs, Archives of Pediatrics and Adolescent Medicine, 161, 937–944, 2007 [PubMed: 17909136]	Intervention: Care coordination within health services only
Great Britain Department for Education, Spring, Consortium, Meeting the needs of complex adolescents: learning summary 2, 4, 2017	Publication type: Overview of service delivery models. No data on effectiveness
Great Britain Department of Health, Children and young people in mind: the final report of the national CAMHS review, 117p., 2008	Publication type/study design: Literature review, qualitative investigations and review of current practice. No data on effectiveness
Great Britain. Department of, Health, Better care : better lives : improving outcomes and experiences for children, young people and their families living with life-limiting and life-threatening conditions, 2008	Publication type: Review of existing practice and framework for service delivery. No data on effectiveness
Groleger Srsen, K., Vidmar, G., Zupan, A., The importance of the key worker in the processes of care for chronically ill or disabled children, Developmental Medicine and Child Neurology, 55, 13, 2013	Publication type: Conference abstract
Guralnick, M. J., Early intervention for children with intellectual disabilities: Current knowledge and future prospects, Journal of Applied Research in Intellectual Disabilities, 18, 313–324, 2005	Publication type: Narrative review
Halpin, Julia, Pitt, Sally, Dodd, Emma, EarlyBird in South Staffordshire: reflections on an innovative model of interagency working to deliver an intervention for families of preschool children with autistic spectrum disorder, BRITISH JOURNAL OF SPECIAL EDUCATION, 2011	Publication type: Overview of model implementation and evaluation. No data on effectiveness
Harris, Karen, Farrell, Peter, Beresford, Booth Boulton Boulton Closs Farrell Farrell Larcombe Lightfoot Lightfoot, Educating children and young people with medical needs: Effective provision and practice, Support for Learning, 19, 13–18, 2004	Outcomes: Thematic summary of results. No data on effectiveness
Hetrick, S. E., Bailey, A. P., Smith, K. E., Malla, A., Mathias, S., Singh, S. P., O’Reilly, A., Verma, S. K., Benoit, L., Fleming, T. M., Moro, M. R., Rickwood, D. J., Duffy, J., Eriksen, T., Illback, R., Fisher, C. A., McGorry, P. D., Integrated (one-stop shop) youth health care: best available evidence and future directions, The Medical journal of Australia, 207, S5–S18, 2017 [PubMed: 29129182]	Population: Not limited to disabled children and young people with severe complex needs
Hopkins, L. J., Hospital-based education support for students with chronic health conditions, Australian health review : a publication of the Australian Hospital Association, 40, 213–218, 2016 [PubMed: 26412444]	Publication type: Narrative review/overview of current practice. No data on effectiveness
Hughes, L., AD/HD is a bio-psychosocial condition requiring support from integrated services, Emotional and Behavioural Difficulties, 12, 241–253, 2007	Publication type: Overview of the development of a framework for interagency working. No data on effectiveness
Hunt, Pam, Soto, Gloria, Maier, Julie, Liboiron, Nicole, Bae, Soung, Beckman, Erwin Gaylord-Ross Giangreco Giangreco Guralnick Hanson Hanson Hanson Hunt Hunt Hunt Hunt Hunt Janney Kalyanpur Kazdin Krueger LeLaurin Lieber Lincoln Merritt Morgan Odom Odom Odom Odom Rafferry Salisbury Siegel Strauss West, Collaborative Teaming to Support Preschoolers With Severe Disabilities Who Are Placed in General Education Early Childhood Programs, Topics in Early Childhood Special Education, 24, 123–142, 2004	Study design: Case studies
Johnson, M. H., George, P., Armstrong, M. I., Lyman, D. R., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Delphin-Rittmon, M. E., Behavioral management for children and adolescents: Assessing the evidence, Psychiatric Services, 65, 580–590, 2014 [PubMed: 24343339]	Population: Children and young people with problem behaviours of elevated risk. Not limited to disabled children and young people with severe complex needs
Kaehne, Axel, User involvement in service integeration and carers’ views of co-locating children’s services, Journal of Health Organization and Management, 2013 [PubMed: 24341179]	Study design: Non-comparative
Kazak, A. E., Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice, and collaboration in pediatric family systems medicine, Families, Systems and Health, 24, 381–395, 2006	Publication type: Overview of model/narrative review
Kelly, A., Golnik, A., Cady, R., A medical home center: Specializing in the care of children with special health care needs of high intensity, Maternal and Child Health Journal, 12, 633–640, 2008 [PubMed: 17710520]	Publication type: Overview of model and case examples. No data on effectiveness
Kerfoot, Michael, Partnerships between health and local authorities, 2005	Publication type: Book chapter
Kieckhefer, G. M., Trahms, C. M., Supporting development of children with chronic conditions: from compliance toward shared management, Pediatric nursing, 26, 354–363, 2000 [PubMed: 12026469]	Publication type: Overview of models. No data on effectiveness
King, G., Tucker, M., Baldwin, P., Lowry, K., LaPorta, J., Martens, L., A life needs model of pediatric service delivery: services to support community participation and quality of life for children and youth with disabilities, Physical & Occupational Therapy in Pediatrics, 22, 53–77, 2002 [PubMed: 12216367]	Publication type: Overview of model. No data on effectiveness
Kotsopoulos, S., A model of continuous intervention for children with autism spectrum disorder (ASD), Child and Adolescent Mental Health, 16, 3, 2011	Publication type: Conference abstract
Lambert, M., Schottle, D., Bock, T., Schulte-Markwort, M., Naber, D., Karow, A., Hamburg model of integrated care for severely ill patients with psychotic disorders, Psychotherapeut, 59, 95–99, 2014	Non-English language
Lambros, Katina, Kraemer, Bonnie, Wager, James Derek, Culver, Shirley, Angulo, Aidee, Saragosa, Marie, Aman, Atkins Baker Barrett Batshaw Clair Brereton Bruns Dangan Dekker Eisenhower Emerson Emerson Esbensen Freeman Hoagwood Hunter Hurley Iovannone Kataoka Kutash Lecavalier Maes McCarthy McIntyre McIntyre Paschos Prout Snyder Stephan Tasse Taylor Weiss Weist Yell, Students with dual diagnosis: Can school-based mental health services play a role?, Journal of Mental Health Research in Intellectual Disabilities, 9, 3–23, 2016	Outcomes: No comparative data for outcomes of interest
Langberg, J. M., Brinkman, W. B., Lichtenstein, P. K., Epstein, J. N., Interventions to promote the evidence-based care of children with ADHD in primary-care settings, Expert Review of Neurotherapeutics, 9, 477–487, 2009 [PubMed: 19344300]	Intervention: Aimed at increasing primary care provider adherence to ADHD guidelines. Primarily educational interventions delivered within healthcare only
Lenehan Christine, Geraghty Mark, Good intentions, good enough? A review of the experiences and outcomes of children and young people in residential special schools and colleges, 46, 2017	Publication type and study design: Overview of services, recommendations and qualitative experiences. No data on effectiveness
Lenehan, Christine, These are our children: a review by Dame Christine Lenehan Director, Council of Disabled Children, 37, 2017	Publication type and study design: Overview of services, recommendations and qualitative experiences. No data on effectiveness
Lewis, M., Noyes, J., Discharge management for children with complex needs, Paediatric nursing, 19, 26–30, 2007 [PubMed: 17542318]	Publication type: Commentary
Limbrick-Spencer, Gudrun, The Keyworker: a practical guide; a comprehensive description and evaluation of the one hundred hours model for supporting the families of children who have disabilities, 56p., 2001	Publication type: Book chapter
Local Government, Association, Improving outcomes for children and families in the early years: a key role for health visiting services, 24, 2017	Publication type: Case studies of different health visiting services. No data on effectiveness
Local Government, Association, The council role in special education, 26, 2014	Publication type: Case studies of different council services. No data on effectiveness
Lynch, Sean E., Cho, Jennifer, Ogle, Stacy, Sellman, Heather, dosReis, Susan, A Phenomenological Case Study of Communication Between Clinicians About Attention-Deficit/Hyperactivity Disorder Assessment, Clinical Pediatrics, 53, 11–17, 2014 [PubMed: 23899584]	Study design: Qualitative
Lynch, Sean, et al, Pediatric integrated behavioral health service delivery models: using a federal framework to assess levels of integration, Social Work in Health Care, 58, 32–59, 2019 [PubMed: 30321132]	Intervention: Integrated service delivery within health care only
Maloney, Danielle, Walter, Garry, Contribution of ‘school-link’ to an area mental health service, Australasian psychiatry : bulletin of Royal Australian and New Zealand College of Psychiatrists, 13, 399–402, 2005 [PubMed: 16403139]	Population and intervention: Implemented at the school level. Not limited to disabled children and young people with severe complex needs
Mannell, Jenevieve, Treating children’s mental health problems. Collaborative solutions for family physicians, Canadian family physician Medecin de famille canadien, 51, 1369–8, 2005 [PubMed: 16250423]	Publication type: Commentary
Marshall Lydia, Leach Thomas, Cornick Peter, Children’s services omnibus: wave 1 research report, 70, 2017	Study design and outcomes: No comparative data for outcomes of interest
Martin, Gordon, Costello, Helen, Leese, Morven, Slade, Mike, Bouras, Nick, Higgins, Stephen, Holt, Geraldine, G. Martin, H. Costello M. Leese M. Slade N. Bouras S. Higgins, G. Holt, An exploratory study of assertive community treatment for people with intellectual disability and psychiatric disorders: conceptual, clinical, and service issues, 49, 516–524, 2005 [PubMed: 15966959]	Population: Includes adults with intellectual disability (mean age 45)
Mayor, Susan, Service design. Putting research solutions to the test, The Health service journal, 123, 21–3, 2013 [PubMed: 24383188]	Publication type: Overview of collaboration for leadership in applied health research and care
McCartney, E., Boyle, J., Ellis, S., Bannatyne, S., Turnbull, M., Indirect language therapy for children with persistent language impairment in mainstream primary schools: outcomes from a cohort intervention, International journal of language & communication disorders, 46, 74–82, 2011 [PubMed: 20337570]	Population: Children with language impairment only
McConkey, Roy, Barr, Owen, Baxter, Rosario, Complex needs: the nursing response to children and young people with complex physical healthcare needs, 36p., 2007	Publication type: Narrative review and development of consensus recommendations
McGonnell, M., Corkum, P., McKinnon, M., MacPherson, M., Williams, T., Davidson, C., Jones, D. B., Stephenson, D., Doing it right: An interdisciplinary model for the diagnosis of ADHD, Journal of the Canadian Academy of Child and Adolescent Psychiatry, 18, 283–286, 2009 [PMC free article: PMC2765379] [PubMed: 19881936]	Study design: Qualitative and non-comparative survey
McKay, C. E., Osterman, R., Shaffer, J., Sawyer, E., Gerrard, E., Olivera, N., Adapting services to engage young adults in ICCD clubhouses, Psychiatric rehabilitation journal, 35, 181–188, 2012 [PubMed: 22246116]	Outcomes: Descriptive characteristics of program participants and qualitative evaluation
McWilliam, R. A., The Routines-Based Model for supporting speech and language, Revista de Logopedia, Foniatria y Audiologia, 36, 178–184, 2016	Publication type: Overview of model and description of needs. No data on effectiveness
Meadan, Hedda, Daczewitz, Marcus E., Internet-Based Intervention Training for Parents of Young Children with Disabilities: A Promising Service-Delivery Model, Early Child Development and Care, 185, 155–169, 2015	Intervention: Increasing parental involvement in delivering care. Unclear what services were involved
Michael, M., Daub, S., Brecht, J., Hutchison, S. L., Washington, L., Edelsohn, G. A., Adolescent Behavioral Health Home Plus: An Integrated Care Model, Journal of the American Academy of Child and Adolescent Psychiatry, 57, S190, 2018	Publication type: Conference abstract
Miller, T. R., Elliott, T. R., McMaughan, D. M., Patnaik, A., Naiser, E., Dyer, J. A., Fournier, C. J., Hawes, C., Phillips, C. D., Personal care services provided to children with special health care needs (CSHCN) and their subsequent use of physician services, Disability and Health Journal, 6, 317–324, 2013 [PubMed: 24060254]	Intervention: Health services only
Missiuna, C., Pollock, N., Campbell, W., Decola, C., Hecimovich, C., Sahagian Whalen, S., Siemon, J., Song, K., Gaines, R., Bennett, S., McCauley, D., Stewart, D., Cairney, J., Dix, L., Camden, C., Using an innovative model of service delivery to identify children who are struggling in school, British Journal of Occupational Therapy, 80, 145–154, 2017	Intervention: Approach to screening school-aged children for motor coordination difficulties
Missiuna, C., Pollock, N., Hecimovich, C., Bennett, S., Gaines, B. R., Camden, C., Partnering for change: Transforming health service delivery for children with developmental coordination disorder, Developmental Medicine and Child Neurology, 55, 50, 2013	Publication type: Conference abstract
Moore, J. A., Karch, K., Sherina, V., Guiffre, A., Jee, S., Garfunkel, L. C., Practice procedures in models of primary care collaboration for children with ADHD, Families, systems & health : the journal of collaborative family healthcare, 36, 73–86, 2018 [PubMed: 29215904]	Intervention: Collaboration within health services only
Myers, K., Vander Stoep, A., Zhou, C., McCarty, C. A., Katon, W., Effectiveness of a telehealth service delivery model for treating attention-deficit/hyperactivity disorder: a community-based randomized controlled trial, Journal of the American Academy of Child & Adolescent Psychiatry, 54, 263–74, 2015 [PMC free article: PMC4406418] [PubMed: 25791143]	Intervention: Health services only
Nair, M. K. C., Chacko, D. S., Indira, M. S., Siju, K. E., George, B., Russell, P. S., A primary care approach for adolescent care and counseling services, Indian Journal of Pediatrics, 79, S79–S83, 2012 [PubMed: 21617908]	Non-OECD country: India
National Development Team For, Inclusion, Guide for commissioners of services for children and young people who challenge services, 28, 2017	Publication type: Guidance. No data on effectiveness
National Development Team For, Inclusion, In, Control, Reviewing the commissioning of services for children and young people who challenge: end of project report, 26, 2016	Publication type: Overview of local commissioning arrangement, qualitative experiences and examples of good practice. No data on effectiveness
National Youth, Agency, A guide to commissioning outcomes for young people, 24, 2019	Publication type: Commissioning guidance. No data on effectiveness
Nicoll Tricia, Making it personal: a provider guide to personalisation, personal budgets and education, health and care plans, 63, 2014	Publication type: Guidance. No data on effectiveness
Nicoll, Tricia, How to commission for personalisation: guidance for commissioners and others in children and young people–s services, 149, 2014	Publication type: Commissioning guidance. No data on effectiveness
Noam, G. G., Bernstein-Yamashiro, B., The role of a student support system and the clinical consultant, New Directions for Youth Development, 2013, 85–98, 2013 [PubMed: 23589209]	Publication type: Commentary
Noell, G. H., Volz, J. R., Henderson, M. Y., Williams, K. L., Evaluating an integrated support model for increasing treatment plan implementation following consultation in schools, School psychology quarterly : the official journal of the Division of School Psychology, American Psychological Association, 32, 525–538, 2017 [PubMed: 28221053]	Intervention/comparison: Different supervision models for teachers implementing treatment plans
Osher, David M., Bruner, Cuban Dwyer Goode Hodges Huberman Jewett Johnson Kagan McGuire Melville Merton Miles Osher Osher Rothman Schulberg, Creating comprehensive and collaborative systems, Journal of Child and Family Studies, 11, 91–99, 2002	Publication type: Commentary
Oxford Brookes University Institute of Public Care, Integrated services for children and young people with a disability in Conwy: a case study, 9, 2019	Publication type: Overview of an integrated service. No data on effectiveness
Oxford Brookes University Institute of Public Care, The integrated service for children with additional needs (ISCAN) in Gwent: a case study, 8, 2019	Publication type: Overview of a care coordination model. No data on effectiveness
Palfrey, J. S., Sofis, L. A., Davidson, E. J., Liu, J., Freeman, L., Ganz, M. L., The Pediatric Alliance for Coordinated Care: Evaluation of a Medical Home Model, Pediatrics, 113, 1507–1516, 2004 [PubMed: 15121919]	Population: Children with special health care needs; unclear if they had needs in all three areas and less than half described as having severe needs
Parker, G., et al, A systematic review of the costs and effectiveness of different models of paediatric home care, 118p., 2003 [PubMed: 12633528]	Population: Very low birth weight babies or children with asthma, diabetes or mental health problems. Unlikely to have needs in all three areas
Parsons, Stephen, A service perspective on ‘Evidence based pathways to intervention for children with Language Disorders’, International Journal of Language & Communication Disorders, 54, 24–25, 2019 [PubMed: 30600601]	Publication type: Commentary
Preparing For, Adulthood, PfA factsheet: the links between the Children and Families Act 2014 and the Care Act, 19, 2014	Publication type: Factsheet
Raghavan, R., et al, A randomized controlled trial of a specialist liaison worker model for young people with intellectual disabilities with challenging behaviour and mental health needs, Journal of Applied Research in Intellectual Disabilities, 22, 256–263, 2009	Intervention: Model does not include services working together
Ratzon, Navah Z., Lahav, Orit, Cohen-Hamsi, Shifra, Metzger, Yehiela, Efraim, Daniela, Bart, Orit, Comparing different short-term service delivery methods of visual-motor treatment for first grade students in mainstream schools, Research in Developmental Disabilities, 30, 1168–76, 2009 [PubMed: 19394194]	Population: Children with visual-motor difficulties only (children were excluded if they had a number of other conditions)
Reading, R., Marpole, S., Public health: Establishing an interagency equipment fund for children with disabilities, Archives of Disease in Childhood, 82, 188–91, 2000 [PMC free article: PMC1718267] [PubMed: 10685916]	Publication type: Overview of the development of an interagency equipment fund. No data on effectiveness
Regulation,, Quality Improvement, Authority, A baseline assessment and review of community services for children with a disability, 56, 2013	Publication type: Overview of services. No data on effectiveness
Revill, P., Ryan, P., McNamara, A., Normand, C., A cost and outcomes analysis of alternative models of care for young children with severe disabilities in Ireland, Alter, 7, 260–274, 2013	Intervention: Health services only
Roge, Bernadette, Meeting the needs of persons with autism: A regional network model, Special Issue: International priorities for developing autism services via the TEACCH Model-1, 29, 35–49, 2000	Publication type: Narrative review/overview of model
Rowlandson, P. H., Smith, C., An interagency service delivery model for autistic spectrum disorders and attention deficit hyperactivity disorder, Child: care, health and development, 35, 681–690, 2009 [PubMed: 19320646]	Outcomes: Non-comparative.
Ruble, L. A., McGrew, J. H., Toland, M., Dalrymple, N., Adams, M., Snell-Rood, C., Randomized Control Trial of COMPASS for Improving Transition Outcomes of Students with Autism Spectrum Disorder, Journal of Autism and Developmental Disorders, 48, 3586–3595, 2018 [PubMed: 29858713]	Intervention: Education services only
Ruble, Lisa A., McGrew, John H., Toland, Michael D., Dalrymple, Nancy J., Jung, Lee Ann, A randomized controlled trial of COMPASS web-based and face-to-face teacher coaching in autism, Journal of Consulting and Clinical Psychology, 81, 566–72, 2013 [PMC free article: PMC3744829] [PubMed: 23438314]	Intervention: Education services only
Shepley, C., Grisham-Brown, J., Multi-tiered systems of support for preschool-aged children: A review and meta-analysis, Early Childhood Research Quarterly, 47, 296–308, 2019	Population and intervention: Educational interventions. Not limited to disabled children and young people with severe complex needs
Simpson, Wendy, Brown, Carolyn, Nisbet, Nara, Metcalfe, Ruth, Claisse, Zoe, Watson, Lorna, A new model of autism spectrum disorder assessment and diagnosis by multiagency community-based teams in primary schools, Child & Adolescent Mental Health, 18, 187–190, 2013 [PubMed: 32847256]	Outcomes: non-comparative study evaluating acceptability of a service
Singhal, S., Lim, H. H., Chua, A. K., Daniel, L. M., Lim, S. B., Improving access and quality of diagnostic services in a developmental and behavioural service for pre-school children-the triage-track model, Archives of Disease in Childhood, 100, A190, 2015	Publication type: Conference abstract
Social Care Institute For, Excellence, Models of care and care pathways to support mental health and wellbeing of looked after children: Findings of call for evidence, 63, 2017	Population: All looked after children. Data not presented separated for disabled children with severe complex needs
Spencer, A. E., Platt, R. E., Bettencourt, A. F., Serhal, E., Burkey, M. D., Sikov, J., Vidal, C., Stratton, J., Polk, S., Jain, S., Wissow, L., Implementation of Off-Site Integrated Care for Children: A Scoping Review, Harvard Review of Psychiatry, 27, 342–353, 2019 [PMC free article: PMC7374937] [PubMed: 31714465]	Intervention: Integrated care within health services only
Spring, Consortium, Great Britain Department for Education, Creating the conditions for innovation in children’s social care: innovations insights from children’s social care, 1, 2017	Publication type: Examples of innovative practice. No data on effectiveness
Stalker Kirsten, Moscardini Lio, A critical review and analysis of current research and policy relating to disabled children and young people in Scotland: a report to Scotland’s Commissioner for Children and Young People, 65, 2013	Publication type: Narrative review of qualitative studies/policy
Street, Cathy, Youth Access: Making Tracks Project (MtP) - final report, 2011	Population: Primarily mental health problems. Only 13% had a learning disability and 4% had a physical disability
Sultan, Meshal A., Pastrana, Carlos S., Pajer, Kathleen A., Shared Care Models in the Treatment of Pediatric Attention-Deficit/Hyperactivity Disorder (ADHD): Are They Effective?, Health services research and managerial epidemiology, 5, 2333392818762886, 2018 [PMC free article: PMC5882038] [PubMed: 29623286]	Intervention: review of collaboration between primary care providers and mental health services.
Tuominen, T., Harju, M., Oksman, E., Hujala, A., Co-designing integrated care for high-needs clients: the Help Team for school-aged children, JOURNAL OF INTEGRATED CARE, 27, 123–130, 2019	Publication type: Overview of integrated service. No data on effectiveness
Turner Sue, Giraud-Saunders Alison, Personal health budgets: including people with learning disabilities, 44, 2014	Publication type: Overview of good practice examples of including people with learning disabilities in personal budgets. No data on effectiveness
Valado, T., Tracey, J., Goldfinger, J., Briggs, R., HealthySteps: Transforming the promise of pediatric care, Future of Children, 29, 99–122, 2019	Publication type: expert review of Healthy Steps early health screening intervention.
von der Embse, N., Brown, A., Fortain, J., Facilitating inclusion by reducing problem behaviors for students with autism spectrum disorders, Intervention in School and Clinic, 47, 22–30, 2011	Publication type: expert review
Watson, D., Townsley, R., Abbott, D., Exploring multi-agency working in services to disabled children with complex healthcare needs and their families, Journal of Clinical Nursing, 11, 367–75, 2002 [PubMed: 12010534]	Publication type: expert review
Weatherill Pamela, Bahn Susanne, Cooper Trudi, Bespoke program design for school-aged therapy disability service delivery, Journal of Social Work in Disability and Rehabilitation, 11, 166–183, 2012 [PubMed: 22900738]	Publication type: qualitative
Wheatley, Helen, Pathways to success: good practice guide for children’s services in the development of services for disabled children - evidence from pathfinder children’s trusts, 2006	Publication type: narrative good practice guide for children’s trusts
Wilkinson, Lee A., An evaluation of conjoint behavioral consultation as a model for supporting students with emotional and behavioral difficulties in mainstream classrooms, Emotional and Behavioural Difficulties, 10, 79–93, 2005	Intervention: not joint education, health and social care working
Williams, Dusti, Children’s special services--providing services to families and children with special healthcare needs, Tennessee medicine : journal of the Tennessee Medical Association, 97, 43, 2004 [PubMed: 14968689]	Publication type: Service advertisement
Window, Suzanne, Anderson, Lisa, Vostanis, Panos, A multi-agency service for child behavioural problems, Community Practitioner, 77, 180–184, 2004	Population: Children with behavioural problems. No mention of complexity or severity so may not have needs in all three areas
Wise, P. H., Huffman, L. C., Brat, G., A critical analysis of care coordination strategies for children with special health care needs, Title to be Checked, 36, 2007 [PubMed: 20734510]	Intervention: Coordination within health services only
Zanglis, Iris, Furlong, Michael J., Casas, J. Manuel, Achenbach, Adelman Adelman Coutinho Damery Duncan Forness Forness Hodges Hodges Maag Mattison Oswald Quinn Robertson Rosenblatt Rosenblatt Stroul Walrath Wood Wood, Case study of a community mental health collaborative: Impact on identification of youths with emotional or behavioral disorders, Behavioral Disorders, 25, 359–371, 2000	Population: Children with emotional or behavioural problems. No mention of complexity or severity so may not have needs in all three areas

: ADHD: attention deficit hyperactivity disorder; OECD: Organisation for Economic Co-operation and Development Literature search and study selection undertaken for this review and the review of meeting health, social care and education needs simultaneously. Therefore, studies listed in this table are those that are excluded from both reviews

Evidence reviews for commissioning, practice and service delivery models

Commissioning, practice and service delivery models

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs

Commissioning, practice and service delivery models to deliver joined-up care

Recommendations supported by this evidence review

Review question

Introduction

Summary of the protocol

Table 1

Methods and processes

Effectiveness evidence

Included studies

Excluded studies

Summary of studies included in the effectiveness evidence

Table 2

Summary of the effectiveness evidence

Economic evidence

Summary of included economic evidence

Economic model

Evidence statements

Economic

The committee’s discussion and interpretation of the evidence

The outcomes that matter most

The quality of the evidence

Benefits and harms

Cost effectiveness and resource use

Commissioning, practice and service delivery models that meet education, health and social care needs

Review question

Introduction

Summary of the protocol

Table 3

Methods and processes

Effectiveness evidence

Included studies

Excluded studies

Summary of studies included in the effectiveness evidence

Table 4

Summary of the effectiveness evidence

Economic evidence

Included studies

Excluded studies

Summary of included economic evidence

Table 5

Economic model

Evidence statements

Economic

The committee’s discussion and interpretation of the evidence

The outcomes that matter most

The quality of the evidence

Benefits and harms

Cost effectiveness and resource use

Recommendations supported by this evidence review

References – included studies

Effectiveness

Economic

Other

Appendices

Appendix A. Review protocols

Appendix B. Literature search strategies

Literature search strategies for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations

Databases: Embase; and Embase Classic

Database: Health Management Information Consortium (HMIC)

Database: Social Policy and Practice

Database: PsycInfo

Database: Emcare

Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)

Database: Database of Abstracts of Reviews of Effects (DARE)

Database: Health Technology Abstracts (HTA)

Databases: Applied Social Sciences Index & Abstracts (ASSIA); Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)

Database: British Education Index

Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)

Database: Social Sciences Citation Index (SSCI)

Database: Social Care Online

Appendix C. Effectiveness evidence study selection

Study selection for review questions: What are the most effective commissioning, practice and service delivery models to deliver joined-up health, social care and education services for disabled children and young people with severe complex needs?

What combined commissioning, practice and service delivery models are most effective in meeting the health, social care and education needs (including changing and evolving needs) of disabled children and young people with severe complex needs?

Appendix D. Effectiveness evidence

Appendix E. Forest plots