Integrated responses for people with cognitive disability and complex support needs: Factors and principles

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VOLUME 2020 , ISSUE 2 (Dec 2020) > List of articles

Integrated responses for people with cognitive disability and complex support needs: Factors and principles

Leanne Dowse * / Isabella Dillon-Savage / Angela Dew / Iva Strnadová

Keywords : cognitive disability, complex support needs, integrated response, social care system

Citation Information : Evidence Base. Volume 2020, Issue 2, Pages 10-61, DOI: https://doi.org/10.21307/eb-2020-002

License : (CC-BY-NC-ND 4.0)

Published Online: 14-December-2020

ARTICLE

ABSTRACT

People with cognitive disability who have complex support needs typically engage with multiple services across social care domains that operate in silos. These services are individually ill-equipped to adequately recognise the presence or impact of disability and respond to the breadth, depth and intersectional nature of people’s support needs. This lack of appropriate recognition and response often in turn works to further exacerbate the complexity of a person’s support needs. This paper reports on a systematic review of current national and international evidence addressing good practice in supporting people with complex support needs. The review assesses evidence in policy and practice in disciplines including homelessness, child protection, disability, social work, youth studies, health, mental health and drug and alcohol to identify key factors that facilitate or hamper person-centred integrated social care. An analytic frame adapted from Ecological Systems Theory is deployed to present the key factors identified to shape responsive support at the level of people, services and systems. The paper concludes with a discussion of three key principles synthesised from the review as the crucial underpinnings of a responsive social care system for people with cognitive disability and complex support needs.

Australia requires a coherent framework that recognises and addresses the importance of responsive supports for people with cognitive disability (cognitive disability is utilised here as an umbrella term associated with neurodevelopmental diagnostic labels including intellectual disability, borderline intellectual disability or Foetal Alcohol Spectrum Disorder, as well as acquired brain injury) who have complex support needs. This group typically engages with multiple service systems that often do not adequately recognise the presence or impact of disability. Effective responses are limited by the siloed nature of the policy and service context in Australia. Social or clinical specialised service approaches are often ill-equipped to respond to the breadth and depth of people’s support needs. Strict service eligibility criteria may exclude them on the basis of the presence of compounding issues that are outside the remit of any one particular agency. These eligibility issues significantly limit the pool of agencies designated, prepared to, and capable of, providing support to people whose support needs are multiple and interconnected. Thus, typically people ‘bounce’ between and across service systems, including disability, mental health, health, drug and alcohol, housing and justice. This lack of appropriate recognition and response in turn often works to further exacerbate the complexity of an individual’s support needs. Not only is this instability damaging for the individual, it is also costly to the service system, to governments and to the wider community.

Complex Support Needs: Definitions, Policy and Theory in Context

While the terms ‘complex needs’ and ‘complex support needs’ are increasingly used in research, policy and practice across various disciplines and sectors, there is currently no consistently agreed definition. The terms have been broadly used to describe the presence of a high level of need in one or more areas in combination with needs across multiple domains, in interaction with the services and systems tasked with support (Rankin and Regan, 2004). For people with cognitive disability, complex support needs are commonly associated with multiple co-occurring impairments or conditions and significant circumstantial disadvantage. These may include factors such as mental illness, behaviours that may be a harm to themselves or others, significant health conditions, drug and/or alcohol addiction, histories of trauma, violence or neglect, poverty, social isolation and involvement with the criminal justice system (Dowse et al., 2014). Complexity may also be shaped by age, gender, ethnicity, refugee status or being Aboriginal or Torres Strait Islander. People with cognitive disability who have complex support needs have typically experienced either long-term engagement with multiple service systems or exclusion from services on the basis of being ‘excessively demanding’ (Department of Human Services, Victoria DHS, 2002, 6), and thus fall into the too-hard basket (Dowse et al., 2014).

While relatively small in number, people with cognitive disability who have complex support needs often require intensive and coordinated support. The agencies best placed to intervene earlier and more effectively in a person’s life often have the least involvement (Baldry et al., 2012). In their absence, disadvantage and the need for support often escalate, and intervention is frequently defrayed to more costly services of last resort, such as emergency services, hospitals or police (Baldry and Dowse, 2013). In response to the increasingly complex array of specialist intervention proliferating in social care, health and justice that forms part of the repertoire of service responses to complex support needs, integrated working is increasingly recognised as the preferred response or, as Hood (2012, 28) observes, ‘managing complexity underlies most rationales for integration’. This aligns with the broader trend in public welfare provision identified by Carnwell and Buchanan (2005), where an ecology of autonomous professions is giving way to a more fluid interdisciplinary world of practice.

Concurrent with these trends in practice is the move to personalisation in social care policy in Australia, most closely associated with the introduction of the National Disability Insurance Scheme (NDIS)—a nationally consistent, individual needs–based scheme in part funded via a population-wide tax levy. People with disability who have complex support needs straddle multiple policy portfolios, such as health, disability, welfare, education, justice, transport and housing. The National Disability Insurance Agency (NDIA) recognises that ‘in determining the approach to the supports funded by the NDIS and other service systems, governments will have regard to efficiency, the existing statutory responsibilities and policy objectives of other service systems and operational implications’ (National Disability Insurance Agency NDIA 2013, 2). The articulation of this principle signals a clear expectation that policymakers working within and across jurisdictions and sectors have responsibilities to be inclusive of all people with disability.

Theoretically, Ecological Systems Theory (EST), developed by Urie Bronfenbrenner (1992), has been deployed in understanding people’s complex support needs and their position within a complex structure of systems (Collings, Dew and Dowse, 2018; Dew et al., 2019; Collings et al., 2015; Danker et al., 2017). In applying an ecological approach to individualised planning for people with cognitive disability and complex support needs, Dew et al. (2019, 401) noted that ‘complexity occurs in the intersection between an individual with a high level of need in one or more areas and across multiple domains, and his or her environment including the services and systems underpinning them which are often ill-equipped to meet these needs’. Collings et al. (2015) described services and systems as often lacking the flexibility to respond to the breadth and depth of needs of individuals with complex support needs. The application of the EST framework allows an in-depth consideration of the reciprocal interactions at the person, service and system levels and elucidation of the factors and principles that guide integrated responses to people with cognitive disability and complex support needs.

Addressing the systematic escalation of risk and complexity for people with cognitive disability who have multiple, interconnected and compounding support needs therefore requires evidence-informed, targeted and universal policy settings and service and practice responses to ensure accessibility, inclusion and interagency coordination (Dew et al., 2019; Collings et al., 2016; Rankin and Regan, 2004). This paper reports on a systematic review of current national and international literature to identify the facilitators of and barriers to achievement of the integration and coordination of support for people with cognitive disability and complex support needs at person, service and system levels.

Methods

This systematic review of peer-reviewed articles and grey literature was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) approach (Moher et al., 2009). The review aimed to address the question: ‘What factors underpin integrated responses to people with complex support needs?’

Five bibliographic databases were searched between June and August 2018: Scopus (Elsevier), Social Services Citation Index (Web of Science), Social Services Abstracts (Proquest), MEDLINE and Google Scholar. Only literature from the past six years was searched, to capture current practice. To explore the compounding needs of populations defined as ‘complex’ and the necessary intersectoral practices required to support them, multiple search strategies were employed, with the main search terms including variations of ‘cognitive disability’ and ‘service integration’. Appendix 1 details the specific combinations of key search terms with different areas of complexity.

The criteria for inclusion were:

  • Published between 2013 and 2018.

  • Focused on adults (18 years old and over) or young people (15–18 years old).

  • Peer-reviewed journal articles that provided an evaluation or comprehensive overview of responses to populations with a confluence of complex needs and intersectional disadvantage (i.e., cognitive disability, substance misuse, homelessness, contact with the criminal justice system).

  • Grey literature, including reports of models of support for the identified population, including evaluations of these models (using qualitative and quantitative measures).

Nature of the evidence base

The nature of this review—which sought to understand cross-disciplinary responses to people with complex support needs—together with the diversity of the evidence base examined, meant that one single approach to assessing the quality of the evidence base was not possible. We believe that the perspectives of service users and providers offer valuable insight into the principles underpinning responses and therefore included studies that took a qualitative approach to assessing the delivery and outcomes of support for people with complex support needs, as well as studies that used quantitative data to evaluate the impact of responses. This approach aimed to address earlier calls for a greater examination of measures of success for people with complex support needs—‘particularly the complex interrelation of “hard” quantifiable targets and “soft” or more subjective outcomes’ (Duncan and Corner, 2012, 16).

The difficulty in this approach, as outlined by Daly et al. (2007, 44), is that existing guidelines assume a homogeneity in qualitative research that in reality incorporates ‘a diversity that includes anything from discourse analysis to ethnography, data collected in personal interviews or focus groups (with samples of varying sizes), by participant observation or through documentary analysis’. As this is the case with our dataset, we adopted Daly’s approach to the critical appraisal of qualitative studies, which involves creating a hierarchy of evidence for practice with generalisable studies at the top and single case studies at the bottom. Our approach to quantitative studies involved a consideration of methodological rigour, the quality of data elicited and the conclusions drawn.

The diversity of methodological approaches used to examine responses to people with complex support needs limited the extent to which findings could be interpreted and generalised. This was exacerbated by the necessary inclusion of material from multiple sectors and disciplines. Diamond et al. (2014, 14) identified that the inconsistent and interchangeable language used to conceptualise complex support needs creates a challenge for authors examining the current evidence base, highlighting the fact that, depending on the discipline, ‘the same terminology is used to mean quite different things’. This remains true, and the contested nature of complex needs resulted in a diverse range of outcomes being considered when assessing the impact of responses.

An additional limitation identified in the literature was an overreliance on pilot studies and small sample sizes. In an earlier review of responses to severe and multiple disadvantage, Duncan and Corner (2012, 16) argued that ‘the long term economic case for improved action needs to be properly quantified’. The few included studies that provided cost-effectiveness analyses used inconsistent costing approaches, making generalisation difficult. However, the general trend reported was a decrease in negative costs such as emergency department visits and criminal justice involvement and an increase in positive costs such as training and education.

The lack of longitudinal studies—arguably, a symptom of restrictive funding and overall poor data collection—means that our current understanding of support for this population remains limited. While this is an important gap in our understanding that needs to be addressed, it also reflects the innate challenges to conducting what is considered ‘robust’ research in this area, with Diamond et al. (2012) describing the complexity of creating a control group to establish the counterfactual position and the difficulty in tracking over a long period client groups who, by definition, ‘fall through the cracks’. Despite some positive signs that greater consideration is being given to the unique impact of compounding disadvantage on ethnic minorities, women and people with cognitive disability, the specific experiences of these groups remain understudied. However, while the evidence base included varying terminology and diverse approaches to measuring the impact of response, there were consistently identifiable factors that were described as supporting or hindering good practice, which are discussed in detail below.

Peer-reviewed literature

As depicted in Figure 1, the initial search stage elicited a large number of peer-reviewed articles. Duplicates and titles that focused on populations deemed to be outside the scope of the review (e.g., children and older people, studies related to people with cognitive impairment due to dementia or Alzheimer’s) were removed. Dissertations, editorials, books and non–English-language papers were also excluded. Following this stage, 685 abstracts were reviewed by two authors to ensure rigour and agreement; inter-rater reliability counted using Cohen’s kappa was substantial at κ = 0.7493 (Cohen, 1960; McHugh, 2012). The disagreements were resolved by repeated readings of the abstracts and discussion. This process resulted in 463 articles being deemed broadly relevant and included in a full text review. Again, each paper was assessed by two authors and only papers that provided substantial information on elements that may be important for models of support were included in the final set of 103 articles. Inter-rater reliability counted using Cohen’s kappa was substantial at κ = 0.7505 (Cohen, 1960; McHugh, 2012). Repeated readings of the articles and discussion resolved any disagreements. The large number of included papers (summarised in Table 2) reflects the complex nature of the topic, regarding both the targeted populations and the multitude of disciplines engaged in their support.

Table 1.

Analytic categories defined.

10.21307_eb-2020-002-t001.jpg
Table 2.

Summary of included papers.

10.21307_eb-2020-002-t002a.jpg10.21307_eb-2020-002-t002b.jpg10.21307_eb-2020-002-t002c.jpg10.21307_eb-2020-002-t002d.jpg
Figure 1:

PRISMA flow diagram for article screening and review.

10.21307_eb-2020-002-f001.jpg

In keeping with the focus on models of support for populations with interconnected needs, the majority of the included literature examined cross-sector and multisector interventions including the criminal justice system and police, mental health, specialised drug and alcohol services, homelessness interventions and health. Fifty percent of the included literature specifically focused on people with cognitive disability. The geographic origins of the studies were diverse and included: 23 from Australasia, 38 from North America, 29 from the United Kingdom, 12 from Europe and one from South Africa. Twenty-seven articles reported on evaluations and eight of these included cost analysis of interventions.

Grey literature

Grey literature was included to supplement peer-reviewed papers and capture innovative examples of practice. Following Godin et al. (2015) guidelines for systematic grey literature searches, one author searched: 1) grey literature databases, 2) Google search engines, and 3) targeted websites. As abstracts were often unavailable, the executive summaries and tables of content in the documents were screened instead. Only grey literature that presented a rigorous evaluation of a model (as per inclusion criteria) was included. Screening of publications’ full text followed, resulting in the inclusion of five reports.

Analysis

A purpose-designed proforma was completed for each included article and grey literature report, providing information relevant to the focus of the review, including: a description of an integrated response or specialised intervention; identified factors making up interventions and whether these factors were barriers to or facilitators of good practice; whether the article reported an evaluation of an intervention and, if so, what the principles and practices underpinning this were; and whether the article represented a useful case study. Completed proformas were imported into NVivo11TM qualitative data analysis software. An initial overview of the data revealed that factors were identified at the level of practice and policy and affirmed that EST provided a useful data analysis framework. EST recognises human development and experiences as existing within a series of nested ecological environments, reflecting personal, interpersonal and collective social elements (Bronfenbrenner, 2005). Using an adapted EST framework, the data were organised into three categories relating to person, service and system. Each of the categories is defined in Table 1 below:

Once proformas had undergone the first stage of analysis by one author, the three broad categories (person, service and system) and a broad list of emerging codes were identified by a second author and reviewed by the others. At this stage, all authors provided feedback concerning: a) their level of agreement regarding the suitability of the data in each code, b) refinement of code definitions, and c) additional subcodes.

Responding to complex support needs: People, service and system factors

This section documents the key elements of support provision for people with cognitive disability who have complex support needs as identified in the evidence base. The findings are presented utilising the adapted EST framework, using groupings at the levels of person, service and system. Across these levels, observations are presented regarding identified factors that may facilitate or be a barrier to effective policy and practice.

Person level: Individuals with complex support needs

The evidence base overwhelmingly identifies individualised and person-centred care as a central enabler of effective support provision, with this tailored to the needs, personal preferences, values, goals and challenges experienced by an individual with complex support needs (Ahmed et al., 2016; Barnao, 2013; Beasley et al., 2016; Bowers et al., 2017). This approach links to evidence that successful models encourage ‘personal growth’ by emphasising motivation and confidence (Browning et al., 2016; Davidson et al., 2014; Davies et al., 2016), a sense of belonging and increased community engagement (Dixon et al., 2016; Gonzalez and Andvig, 2015; Wylie and Griffin, 2013), meaningful activities (Cornes et al., 2014) and the creation of supportive and ongoing relationships (Davis et al., 2016; de Vet et al., 2017; Johnson et al., 2014; Urbis, 2015). An important element of these relationships, especially pertaining to practitioners and staff, was continuity (Hardwick, 2013; Johnson et al., 2015; Padwa et al., 2016). When possible and desired by the person, families and broader networks of support should be engaged in the process to assist with clear communication of plans (Ahmed et al., 2016; Davis et al., 2016). The development of accessible information that reflects the cultural specifics of targeted populations (McIntyre et al., 2017) and which, ideally, is created through coproduction with people with disability and complex support needs (Olsen et al., 2016), significantly contributed to the successful implementation of models of care at the person level.

The literature also consistently cites barriers to effective support for people with disability and complex support needs as being associated with difficulties on the part of those supporting them to conceptualise individuals as situated within multiple interconnected systems (Day et al., 2016; McCauley and Samples, 2017; Quinlan and Smele, 2017). For example, people diagnosed with mental illness often struggle to find adequate housing, hold employment, gain access to both mental and physical health care and lack transportation, which in turn results in further marginalisation (Brown et al., 2016; McCauley and Samples, 2017; Nicholas et al., 2017). Despite an increasing focus on integrated care, interrelated and compounding complexities often result in individuals having to navigate uncoordinated or siloed systems with little to no support (Bogenschutz, 2014; Hardwick, 2013; Kelly, 2017; Sestoft et al., 2014; Whiteford et al., 2014). Transitions between, for example, primary care and specialist services were identified as points of high service dropout (Padwa et al., 2016); or those remaining in services become ‘stuck’ in services that are ill-equipped and inappropriate for long-term support, such as emergency shelters or the criminal justice system (Dyer and Biddle, 2016; Quirouette, 2016). It has been found that these person-level difficulties are exacerbated by a lack of accessible or culturally relevant information (Bogenschutz, 2014; McIntyre et al., 2017; Olsen and Carter, 2016), a reluctance on behalf of the individual to engage with mainstream services (Day et al., 2016; de Vet et al., 2017; Dyer and Biddle, 2016) and negative experiences due to staff attitudes (Davies et al., 2016; Venville et al., 2016; Quirouette, 2016). Additionally, the evidence base consistently referenced reports of the person with complex support needs and/or their support networks experiencing marginalisation in decision-making processes relating to their needs (Keller, 2016; Kelly, 2017; Nicholas et al., 2017; van Rensburg and Fourie, 2016; Venville et al., 2015).

Person level: Practitioners

The ability of those working with people with complex support needs to recognise and respond to the complex support needs of people with disability is fundamental to successful support provision. Bowers et al. (2017) described a perceived willingness to advocate for the person’s wishes as also being a pivotal component of support. Themes of receptive listening, inclusiveness and genuine openness to collaboration featured frequently throughout the literature as exemplars of good practice (Davidson et al., 2014; Dixon et al., 2016; Edgren and Barnard, 2015; Gibson et al., 2016; Hardwick, 2013; Nicholas et al., 2017; Urbis, 2015). A collaborative approach for practitioners was evidenced by a preparedness to adopt an inclusive mindset that valued the varied expertise of multidisciplinary teams, often facilitated through frequent team meetings (Ahmed et al., 2016; Hardwick, 2013; Home Office, 2014; Henning, 2016; Keesler, 2014) and the provision of feedback regarding how staff implement new and collaborative ways of working (Reeve et al., 2016). These skills, and practitioners’ ability to better respond to the varied needs of complex populations, were enhanced by a readiness to engage in training and skills development (Henning, 2016; Keesler, 2014; Kirst et al., 2015; Lee et al., 2013). Notable training examples included: a) training for two clinical psychologists in a community forensic team for people with cognitive disability (Browning et al., 2016); b) specialist officer training to recognise mental illness and cognitive disability and learn de-escalation techniques for law enforcement staff (Campbell et al., 2017); c) specific training in how to identify, communicate with and provide legal (and other) support to people with Acquired Brain Injury for criminal justice staff (Landsell, 2018); and d) training for homeless services and Indigenous community services in a culturally safe tool (the Guddi Protocol) to assess neurocognitive disability affecting young Aboriginal and Torres Strait Islander people (McIntyre and Townsend, 2017).

Key challenges that affected the capacity of practitioners and staff to successfully implement good practice were also a focus of the evidence. A lack of specialist clinical knowledge and expertise relating to complex populations was cited as a factor influencing fidelity to best practice (Day et al., 2016; Keller, 2016; Mason et al., 2018; Whittle et al., 2017). Clinical knowledge deficits were exacerbated by the additional complexity of rurality (Caxaj, 2016; Stephens et al., 2014), lack of guidance regarding how to engage necessary additional services to promote intersectoral collaboration (Duffy et al., 2016; Edgren and Barnard, 2015; Mason et al., 2018) and preconceived attitudes pertaining to complex populations, especially those in forensic settings (Davies et al., 2016; Dixon et al., 2016; Dyer and Biddle, 2016). These issues exist within an environment of unrealistic expectation placed on underresourced, time-scarce and often poorly paid staff (Johnson et al., 2015; Mason et al., 2018; Quinlan and Smele, 2017; Rhodes et al., 2013). Professional judgement and an ability to work flexibly to meet the needs of a diverse client base were restricted by organisational structures preoccupied with procedural, managerial and ‘tick-the-box’ types of assessments (Duffy et al., 2016).

Service level

While the structure and framing of models of interventions presented in the evidence were varied, common components were linked to the effective provision of support to populations with complex support needs. Collaborative interagency models were defined as partnerships with shared understanding and commitment (Davidson et al., 2014; Gardiner et al., 2017; Kerman et al., 2017). These models typically involved frequent multidisciplinary and multiagency meetings (Ahmed et al., 2016; Campbell et al., 2017; Henning, 2016) or multiagency learning groups that encouraged practitioners to critically reflect on collaboration with partner agencies and exchange professional expertise (Noga et al., 2016).

Interagency collaboration was further enhanced by secure information-sharing systems (Barbabella et al., 2017; Centre for Disability Research and Policy, University of Sydney CDRP and Young People in Nursing Homes National Alliance YPINHNA (2014); Bruns et al., 2015; Morton, 2017), shared practice guidelines and formal protocols (Duffy et al., 2016; Mason et al., 2018; McIntyre et al., 2017), streamlining of administrative processes (Davidson et al., 2014; McKinnon et al., 2016) and allowing sufficient time to collaborate and for team-building (Keesler, 2014; Lee et al., 2013)—all of which required adequate funding (Kerman et al., 2017; Landsdell, 2018; Till et al., 2015). Co-location of services to provide a single point of access and a gateway to a variety of services (Dooris et al., 2013; Dyer and Briddle, 2016; Hardwick, 2015; Whiteford et al., 2013) was identified as effective in facilitating improved information sharing between service users and services and between services and partner agencies (Petch et al., 2013). The facilitation of better information sharing allowed improved assessments of risk and need as a more complete picture of clients was achieved through coordinated, accurate and timely intelligence from a wider range of services (Home Office, 2014). Important, too, were transparent decision-making processes with clear referral pathways (Henning, 2016; Mason et al., 2018; McKinnon et al., 2016) and an identified liaison person to act as a champion for and coordinate effective interagency collaboration (Brown et al., 2016; van Duijn et al., 2018; Padwa et al., 2016; Whittle et al., 2017). This collaboration resulted in increased client understanding of the services available and enhanced appropriateness of the services provided (Gibson et al., 2016; Home Office, 2014). The provision of appropriate services reduced strain on sectors not designed for the provision of specialised support, like the criminal justice system and hospital emergency departments (Fisher et al., 2016). The importance of flexibility identified at the practitioner level is mirrored at the service level, with the literature describing a need for agile service delivery to reflect target populations’ needs (Gibson et al., 2016; Munce et al., 2014; Weiber et al., 2016), such as less ‘formal’ services and out-of-hours support offered to young people with complex needs (Malvaso and Delfabbro, 2015).

Barriers to the successful implementation of practice models at the service level included administrative and bureaucratic impediments such as an organisational culture unreceptive to relational approaches to complex populations (Keesler, 2014; Rhodes et al., 2013), rigid screening and assessment requirements and intake procedures that can result in the denial of services for those deemed too ‘complex’ (Dyer and Biddle, 2016; Quirouette, 2016) and long waiting lists (Campbell et al., 2017; Kirst et al., 2015; Johnson et al., 2015). Also noted was an overemphasis on risk (Dyer and Briddle, 2016; Kelly, 2017), sometimes coupled with poor guidance regarding what constituted ‘risk’ (Keller, 2016). In addition, a lack of clarity around service ‘readiness’ was reported at the organisational level, often resulting in staff making arbitrary assessments of the likelihood of success or assigning ‘red flags’ that could disproportionately stigmatise and penalise individuals with complex support needs (Quirouette, 2016, 331).

Further identified barriers were lack of role clarity (Brown et al., 2016; Kirst et al., 2015; Mason et al., 2018; van Duijn et al., 2018; Urbis, 2015), poor interprofessional practices such as an unwillingness to share information between agencies (Dyer and Briddle, 2016; Mason et al., 2018) and subpar co-working between specialist clinicians and mainstream services (Hemmings et al., 2014). Also described was a lack of managerial guidance and support around policy and practice (Day et al., 2016; Keller, 2016). Additional interagency blockages included poor communication and information sharing due to untrusting attitudes or ‘turf’ wars (Dooris et al., 2013; Hoeft et al., 2018; Home Office, 2014; Mason et al., 2018; Stephens et al., 2014; van Rensburg and Fourie, 2016), incompatible communication or information technology systems (Kelly, 2016; van Duijn et al., 2018) and inadequate time allocated to coordinate across services (Day et al., 2016; Mason et al., 2018; Quinlan and Smele, 2017). It was also noted that inappropriate service design and evaluation resulted in the exclusion of users (Kelly, 2016; Michalski, 2017; Whittle et al., 2017), inadequate responses to, or acknowledgement of, diverse cultural needs and ‘one-size-fits-all’ service models (Bogenschutz, 2014; Caxaj, 2016; Hoeft et al., 2018; Malvaso and Delfabbro, 2015; McIntyre et al., 2017) and geographical challenges that increased resourcing, infrastructure and staffing shortages (Stephens et al., 2014; Hoeft et al., 2018; Whittle et al., 2017).

Systems level

Collaborative systems-level reforms were widely identified as being key to good practice in supporting people with complex support needs. To achieve this, the evidence base suggests increased involvement of end users in system design, evaluation, policymaking and funding (Davidson et al., 2014; Home Office, 2014; McIntyre and Townsend, 2017; Roberts et al., 2013), systems and databases designed to capture complexity (Hardwick, 2014) and utilisation of technological innovations to overcome geographical barriers such as telemedicine-based collaborative care, which can be used to provide previously unavailable specialty consultations and facilitate training and education for local staff (Caxaj, 2016; Hoeft et al., 2018). Hoeft et al. (2018) suggested that the establishment of legitimate working partnerships, not only across sectors but also with culturally specific organisations, tribal councils and Indigenous groups, could mitigate compounding the marginalisation of vulnerable populations. Additionally, greater attention to early identification and intervention is vital to adequately address the needs of people with disability and complex support needs, alongside cross-sectoral education regarding identification and support (Dyer and Briddle, 2016; Landsell et al., 2018; McKinnon et al., 2016; Munce et al., 2014). All these solutions require adequate funding and time to develop innovative, integrated and tailored services and systems, including blended and flexible funding initiatives (Gibson et al., 2016; Lee et al., 2013; Malvaso and Delfabbro, 2015; Mason et al., 2018; Munce et al., 2014; Stephens et al., 2014; Whiteford et al., 2014). Alongside this, performance monitoring and data collection are required to better capture the impact of specialist interventions targeting these groups (Barbabella et al., 2017; Dooris et al., 2013; Gibson et al., 2016; Hardwick, 2014). Increased use of population-level data by services and funders can also ensure that services are geographically situated in the communities with the most need (Padwa et al., 2016).

The overarching policy, governance and funding contexts within which services operate also presented impediments to good practice. Identified systemic barriers included the marginalisation of specific groups who are disproportionately exposed to risk factors for poor mental health, substance abuse, suicide and injury, such as people with disability and complex support needs (Quinlan and Smele, 2017), Aboriginal people with disability (McIntrye and Townsend, 2017; Stephens et al., 2014; Quirouette 2016) and people from culturally and linguistically diverse backgrounds (Bogenschutz, 2014). This marginalisation was often compounded by social issues including poverty and discrimination (Caxaj, 2016; Gardiner et al., 2017; Henning, 2016; Johnson et al., 2015), which services frequently did not adequately consider (Davidson et al., 2014; Quirouette, 2016). Additionally, people with complex support needs living in rural and remote communities were identified as experiencing specific barriers to service access due to poor availability of geographically proximate specialist services (Barbabella et al., 2017; Bellon et al., 2015; Caxaj, 2016; Hoeft et al., 2018). Community prejudice and resistance to the support of populations with complex support needs were also cited as contributing to the systematic marginalisation of these groups (Johnson et al., 2015; McCauley and Samples, 2017). Additionally, systems and policies that do not support collaborative models (Barbabella et al., 2017; Day et al., 2016), reductive policy and reporting requirements that stifle input and innovation at the service and service-user levels (Dixon et al., 2016; Hardwick, 2014; Urbis, 2015) and entrenched silos, boundaries and gatekeeping (Duffy et al., 2016; Home Office, 2014; Whittle et al., 2017) constrain the proper implementation of models designed to provide integrated care for populations with compounding complexity. The systemic chronic underfunding of services was consistently identified as the underlying cause of the inability of staff and organisations to implement best practice at the person and service levels (Munce et al., 2014; Quirouette, 2016).

Discussion: Principles for Good Practice

This systematic review of the factors underpinning effective support provides insights into the foundational principles of an integrated system of responses that address the needs of people with cognitive disability who have complex support needs. As identified in the introduction, people in this group are users of multiple services with a frequency and intensity of engagement disproportionate to their relatively small numbers. They have typically been excluded from individual services and service sectors due to restrictive eligibility criteria and siloed responses and, as a group, experience significant barriers to receiving continuity of support such that it is rarely achieved, particularly over the long term. In Australia, the introduction of the NDIS ostensibly may provide greater options for this group but, in reality, may perpetuate their marginalisation from both disability specialist and mainstream services as they struggle to access the scheme (Dowse and Dew, 2016).

An integrated response was clearly established in the literature as the preferred framework for delivering support to this group and yet, as described in many of the articles and reports, it is seemingly extremely difficult to achieve and sustain implementation of this type of system. The barriers to achievement are well documented in this paper and those we reviewed. So, too, are the facilitators of an integrated service system model as applied to specific groups, service types or sectors. Its key underpinnings have been shown to be a strengths-based relational model, collaborative interagency servicing and systems-wide policy coherence. The ways these factors may coalesce to enhance responses are explored via three key principles set out below.

Inclusive person-centred engagement

The engagement of service users as co-designers of the services they seek to use is fundamental to building an integrated service system that is acceptable to, and will be used by, people with cognitive disability and complex support needs, their families and carers. Engagement of this kind taps into the strengths of the person, building motivation and confidence and developing skills they may apply to other situations. The evidence is clear that input from service users is optimal for service system development and implementation. Some service users will require support—from family, peers or an independent advocate—and/or accessible, culturally specific materials and resources to fully engage in service design and use. Service users invariably want their practical needs (e.g., housing, transport, mobility, finances) to be addressed, preferably via a ‘one-stop-shop’ through which they can access a range of support and develop a sense of belonging. They want sustained relationships with workers who listen to them and whom they trust and respect. On occasions, the support a person requires may be specialised and sourced from multiple systems (e.g., drug and alcohol rehabilitation or legal aid). The role of a ‘case manager’ is identified as being crucial in this regard to assist the person to develop strategies to help them avert or manage future risks and crises. Workers/practitioners play a key role in engaging service users in the design and use of services. Workers are best equipped to do this if they bring to the relationship a collaborative mindset, an understanding of person-centred approaches and sufficient knowledge of different service sectors to assist the person to effectively navigate their service pathway. Preparedness to engage in, and the availability of, training and development will ensure workers are equipped with knowledge and skills based on the best available evidence.

Collaborative interagency working

A holistic, culturally inclusive and safe collaborative interagency model is needed to enable identification of service gaps and promote cooperative working with community partners to ensure optimal care and support for service users with cognitive disability and complex support needs. The evidence indicates that, for collaborative interagency service models to be successful, they require strong support from senior leadership to champion and lead the shift to a partnership model involving shared understanding and transparent decision-making processes. Just as service users must be involved in service design and operation, so, too, should workers. Service model changes must be underpinned by adequate funding and allow sufficient time for implementation and adjustment so they become embedded into practice. Long-term management and monitoring are essential to maintain service focus and quality alongside continuity of care and support. Physical or virtual co-location of multidisciplinary services is key to providing service users with a single point of access and a gateway to a variety of supports. Alongside co-location, agreed interagency protocols covering referral pathways, information-sharing systems, practice guidelines and administrative processes including joint meetings can assist in achieving interconnected working. Collaborative cross-sector training also ensures a mix of staff skillsets and a shared knowledge base.

Integrated systems

Coordinated and coherent cross-departmental policy, governance and funding approaches are central to the implementation of person-centred and interagency service-level models. Siloed systems are incompatible with the development of the holistic, person-centred, integrated service systems identified as the optimal model for addressing the needs of service users with cognitive disability and complex support needs. Reform of collaborative systems requires end users and practitioners to be involved in design and implementation. Adequate funding and time are required to develop innovative, integrated and tailored services and systems, and performance must be monitored, evaluated and adapted to capture complexity and ensure good practice. Systems must be equitably applied, with recognition of the specific barriers faced by service users and workers in rural and remote areas and those from marginalised groups including Aboriginal and Torres Strait Islanders and people from culturally and linguistically diverse backgrounds. ‘Blue-sky’ thinking is required at the systems level to build infrastructure to fill identified gaps.

Conclusion

A key strength of the approach adopted in this review is its comprehensive interrogation of multiple sectors and populations, which yielded an overview of the intersecting barriers and facilitators experienced by people with cognitive disability and complex support needs. The large number of sources also represented a limitation, as we were required to rigidly apply our inclusion criteria to reduce the reviewed papers to a manageable number. Inevitably, this means some potentially useful examples were discarded. However, this rigorous process ensured capture of the key components identified in excluded as well as included articles. Importantly, the lack of longitudinal outcome data has been a key barrier to assessing the impact of interventions.

Nonetheless, the review presented here reaffirms the fact that individuals with cognitive disability and complex support needs face particular challenges in accessing adequate and effective support across multiple sectors. Agencies are frequently insufficiently flexible to meet the individual’s range of needs and lack capacity for collaborative and integrated responses to the complexity of these needs. However, the issue is beyond the qualities of any one agency or sector; rather, in large part, this is due to systemic inflexibility, which works against the implementation of an integrated support system to ensure this group receives the multiple and simultaneous support they require. The implication of this system incapacity is that people with cognitive disability who have complex support needs risk continued exclusion and poor support experiences.

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REFERENCES

  1. Ahmed, F. , Bechtold, K. , Smith, G. , Roy, D. , Everett, A. and Rao, V. 2016. Program of enhanced psychiatric services for patients with brain injury and neuropsychiatric disturbances: A proposed model of care. The Journal of Neuropsychiatry and Clinical Neurosciences 28: 147–52..
  2. Baldry, E. and Dowse, L. 2013. “Compounding mental and cognitive disability and disadvantage: Police as care managers”, In Chappell, D. (Ed.), Policing and the Mentally Ill: International Perspectives CRC Press, Taylor & Francis Group, Boca Raton, FL, 219–34.
  3. Baldry, E. , Dowse, L. , McCausland, R. and Clarence, M. 2012. Lifecourse Institutional Costs of Homelessness for Vulnerable Groups. Final Report to Department of Families, Housing, Community Services and Indigenous Affairs Australian Government, Canberra, ISBN: 978-0-646-57814-9.
  4. Barbabella, F. , Melchiorre, M. G. , Quattrini, S. , Papa, R. and Lamura, G. 2017. “European Observatory Policy Briefs”, In Richardson, E. and Van Ginneken, E. (Eds), How Can eHealth Improve Care for People with Multimorbidity in Europe? European Observatory on Health Systems and Policies, NIVEL & TU Berlin 2017, Copenhagen.
  5. Barnao, M. 2013. The Good Lives Model tool kit for mentally disordered offenders. The Journal of Forensic Practice 15: 157–70..
  6. Beasley, J. B. , Klein, A. and Weigle, K. 2016. “Diagnostic, treatment and service considerations to address challenging behavior: A model program for integrated service delivery”, In Rubin, I. L. , Merrick, J. , Greydanus, D. E. and Patel, D. R. (Eds), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan Springer International Publishing, Cham, Switzerland.
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  8. Bogenschutz, M. 2014. ‘We find a way’: Challenges and facilitators for health care access among immigrants and refugees with intellectual and developmental disabilities. Medical Care 52: 64–70.
  9. Bowers, A. , Owen, R. and Heller, T. 2017. Care coordination experiences of people with disabilities enrolled in Medicaid managed care. Disability and Rehabilitation 39: 2207–14..
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  13. Browning, M. , Gray, R. and Tomlins, R. 2016. A community forensic team for people with intellectual disabilities. The Journal of Forensic Practice 18: 274–82..
  14. Bruns, E. J. , Hyde, K. L. , Sather, A. , Hook, A. N. and Lyon, A. R. 2016. Applying user input to the design and testing of an electronic behavioral health information system for wraparound care coordination. Administration and Policy in Mental Health and Mental Health Services Research 43: 350–68..
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  17. Caxaj, C. S. 2016. A review of mental health approaches for rural communities: Complexities and opportunities in the Canadian context. Canadian Journal of Community Mental Health 35: 29–45.
  18. Centre for Disability Research and Policy, University of Sydney (CDRP) and Young People in Nursing Homes National Alliance (YPINHNA) 2014. Service Coordination for People with High and Complex Needs: Harnessing existing cross-sector evidence and knowledge. Sydney: University of Sydney. Available from: http://sydney.edu.au/health-sciences/cdrp/ .
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  22. Cornes, M. , Manthorpe, J. , Joly, L. and O’Halloran, S. 2014. Reconciling recovery, personalisation and Housing First: Integrating practice and outcome in the field of multiple exclusion homelessness. Health & Social Care in the Community 22: 134–43.
  23. Daly, J. , Willis, K. , Small, R. , Green, J. , Welch, N. , Kealy, M. and Hughes, E. 2007. A hierarchy of evidence for assessing qualitative health research. Journal of Clinical Epidemiology 60: 43–49.
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