Introduction

Definitions and terminology matter. The study and practice of the mental health of intellectual disabilities (ID) probably suffers to some extent from the complication of terminology arising from dual (or multiple) diagnosis. The title of this book itself reflects that complexity. It is not possible to easily capture the complexity of the field in terms that will be to the point and universally accepted. Accordingly, there is no worldwide consensus as to whether a recognizable “mental health of ID” field exists or whether, for example, it is now more of a “neurodevelopmental” field. People are not suddenly remarkably different because of a change of one point on an IQ scale. Such “fields” of research and practice are always artificially drawn to some extent; they consist in reality of multiple overlapping areas. Where the boundaries should be drawn and which terminology should be used is inevitably controversial (see Chapter 2 by Marco Bertelli et al.). A prime example is the uncertain place in services of people with autism spectrum disorders but without ID.

If we accept though that there is, or should be, a “mental health of ID” field of practice and research, with reasonably definable boundaries, then this would be distinct from the general medical health care of people with ID and from their education and social care. It is the author’s view, as of many others but no means all, that the “mental health” (problems) term should encompass behavioral problems carrying significant risk or distress. This then is the “field” to which will be referred to in this chapter. The preceding chapters in this new edition have shown how knowledge about this field of the mental health of ID continues to advance. Clinicians and researchers working with people with ID are gradually more able to draw on evidence derived direct from the care of people with ID. There is less need for extrapolation from the evidence base of generic mental health care.

This final chapter is an opportunity for the author to reflect on where this field is now. The chapter will include the author’s views on the ongoing central debate about the relationships between mental health problems and behavioral problems, on how services might further develop, and on what some of the ongoing research should be.

Basic tenets

It is important to understand how this field has evolved to date (see Chapter 1 by Nick Bouras). This is surely more difficult than for many others, as services for people with ID vary so much, especially between a few high-income countries and the rest of the world. A major trend witnessed in most high-income countries has been the process of deinstutionalization of ID services, occurring mainly in the latter part of the 20th century. Driven by multiple influences, it was made possible by clinicians who were committed to the development of improved care for this ultra-marginalized group of patients. Considering there had been virtually no community care previously, a huge amount was achieved in a relatively short period. In this era there was also simultaneously a great deal of research interest into the epidemiology of mental disorders and challenging behaviors in people with ID. Previous suggestions of institutionalization being the major precipitant and perpetuator of mental health problems in people with ID did not stand the test of time.

What became abundantly clear over this period was that: (i) people with ID could (and did) have coexisting mental health problems; and (ii) people with ID actually have an increased prevalence of many mental disorders. These two facts have been well documented previously and, indeed, have arguably become two of the basic tenets of the modern field of the “mental health of ID” (MHID). It can be argued though that it is still the case, even well into the 21st century, that these tenets are still not universally understood, especially by those not trained in the mental health aspects of ID.

Even from within the field some have continued to challenge the evidence that mental health problems are more common in ID. Jason Buckles (see Chapter 3) has reviewed the most recent epidemiological research and highlighted the problems of both over- and underestimating the prevalence of mental disorders in people with ID. The evidence available has been boosted substantially by recent large-scale population-based studies. What has emerged now is a more nuanced understanding that some mental disorders appear increased in people with ID, whilst the prevalence of other mental disorders is more or less the same as in people with more typical IQ. What is clearly increased is the prevalence of behavioral problems. It is evident that when problem or challenging behaviors are not included, the increased prevalence in mental disorders overall in people with ID is less marked. Thus, the key is always how challenging behaviors are conceptualized and classified (see also Chapter 20 by Sally-Ann Cooper).

“Mental health” and “challenging behaviors”

One of the most enduring clinical and research questions has been, “To what extent should mental illness and behavioral problems be considered separately in people with ID?” The term, “behavioral equivalents,” was used for some years until there was a backlash against it. Evidence was not forthcoming to substantiate challenging behaviors as equivalents of psychiatric symptoms. The author would agree that we have now witnessed the “end of behavioral equivalents.” Nonetheless, challenging behaviors are associated with mental illness overall, so a preferred (but less emphatic) term instead might be behavioral “correlates.” These still retain some utility for assessment and treatment. Like the increased prevalence of mental disorders overall, the overlap between mental health problems and challenging behaviors in people with ID should neither be overplayed nor underplayed; mental illness is but one cause or consequence of challenging behaviors from very many. The relationships between them though are arguably still underinvestigated.

The distinction that should be made between behavioral problems and mental illness remains then one of the key issues (and tensions) for the field. It has huge clinical and service implications. It sometimes, unfortunately, becomes the basis of professional rivalries. Some of this is probably driven by lingering antimedical attitudes and the stigma of mental illness by association. Perhaps motivated by the harm caused by lazy labeling and poor quality mental health care, some still try to deny the extent of dual diagnosis. Unfortunately this only lets down people with ID. There has been research that appears at least partly motivated by an intention to prove that medication is mostly harmful and ineffective for people with ID. It is difficult to accept this, not least because of the low-powered and methodological gaps of existing studies.

The truth is that it will always be impossible to neatly separate out mental health and behavioral problems in people with ID. The need for a holistic (biopsychosocial) approach, including coordinated multidisciplinary input, is arguably no greater in the whole of health care than for people with ID and mental health problems. But very often concurrent trends are contradictory; for example, the desirability of holistic practice or care exists widely in staff or carers’ minds whilst there is a concurrent process in services towards more and more super-specialization. Various ways of understanding, such as the “medical” or “behavioral” or other “models,” are different aids that should be applied simultaneously to provide insights at different levels of mental health problems. Problems can be approached from the “biological” level (e.g., genetics, neuroimaging, receptors) up to the “psychosocial” level (e.g., cognitive processes, beliefs), and even the “political” level (e.g., law, policy). A unimodal practice or narrow understanding will cause incomplete and, thus, poor practice.

Service provision

Levi-Strauss (1966) famously suggested that humans tended towards binary (and oppositional) thinking. Service provision for those dually disadvantaged by ID and coexisting mental health problems is still heavily determined by widespread binary thinking. Unfortunately it continues to prove remarkably difficult for many to remember that people can have both ID and mental health problems. In many low-income countries there can be very little provided for the care of the dually diagnosed. In high-income countries mental health and ID (or developmental) services mostly continue to operate separately with quite different cultures. Where there are stand-alone, dedicated services for the dually diagnosed, the mental health and challenging behavior components are often split, leading to a fragmentation of already scant resources (see also Chapter 23 by Johanna Lake et al.).

One can easily understand how services have varied so much between countries given the enormous differences in income, funding, and infrastructure, as well as in philosophies and culture. But service provision has also widely varied within countries and even between areas with similar demographics. This reflects the many different (and often competing) ideologies in the field. It is often fashionable to say that we should not have a “one size fits all” approach to service provision. It does stretch belief, however, to think that these widely varying services are likely to be equally effective or to provide equal value for money.

There have not been the same sorts of service developments for people with ID that have been seen in recent years, such as the formation of crisis resolution and home treatment services. Certainly this is at least partly due to resources. If mental health services are often on the margins of healthcare funding, then mental health of ID services can be said to be on the margins of those margins. But it has also partly been due to ID services having only relatively recently embraced service research. It still remains unclear how best to deliver mental health care for people with ID. The problem for dedicated mental health of ID services (where they exist) is that they are inevitably too small-scale to operate alone effectively. They will always tend to be squeezed between generic mental health and ID services, even if their clinicians work assiduously at both interfaces.

A major difficulty in overcoming the struggle of balancing between mental health and ID services is the differing opinions about who should provide mental health care and where mental health of ID service provision should lie primarily, whether alone or aligned more closely with one of these two larger “empires.” With the stigma of mental illness and the long and sad history of abuse of people with ID, there can be overcompensation from ID staff and frequent subtle or even overt criticisms of generic mental health services. There can often be a stigmatizing attitude towards mental health staff from ID staff (Hassiotis et al., 2003). Given the marginalization of people with ID, this is an ironic kind of reverse stigmatization. Barr (2011) noted the perjorative connotations and use of the term, “mainstream.” There are frequently assumptions made that the ongoing problems for people with ID accessing generic mental health services lie only with the mental health staff.

The best intentions to protect people with ID from abuse can cause some paradoxical effects. Increased scrutiny of inpatient units and the rise of the “safeguarding vulnerable people from abuse” agenda (e.g., Department of Health, 2012) are long overdue. But such efforts should only be motivated by the aim of better care, which includes necessary treatment of mental illness and challenging behaviors. They should not be influenced by antimedical or antihospital bias. Otherwise they may lead to commissioners becoming risk-averse to the opening and maintenance of local, quality inpatient services and may lead in turn to inadvertent outcomes, such as people being placed far from their homes when they need admissions. Staff in ID services should not just complain as outsiders about people with ID being misunderstood or neglected or stigmatized (or themselves by proxy) by mental health services, but instead take an active role in assisting these services.

There is widespread agreement of the need for better crisis services for people with ID, although simple data of this need is often lacking. But there is not universal support for developing new stand-alone “super-specialist” services, such as crisis services for people with ID (e.g., Hemmings and Al-Sheikh, 2013). The replication of super-specialization of services that is occurring in the generic mental health services of many high-income countries is unlikely in any case to occur for people with ID, owing to lack of critical mass and resources. It is the author’s view, like many others, that the best way forward is in developing new and closer ways of joint working with staff in generic mental health services (Hemmings et al., 2014). Sometimes the mental health of ID staff might often be best situated directly within the wider mental health services. Depending on local factors, there could sometimes instead be new “hybrid” services (see also Chapter 23 by Johanna Lake et al.). The mental health of ID staff would then be more highly visible to their mental health colleagues (Flynn, 2010). They would concentrate on a core group with ID who need continuing mental health care, high support, and more intensive input at times. Their other main function would be to enhance the assessments of people with low IQ and a range of complex needs such as mental illness, autism spectrum disorders (ASD), attention-deficit/hyperactivity disorder (ADHD), personality disorders, and/or epilepsy. This may mean more assessment and management of people with borderline low IQ and/or ASD who would benefit from mental health of ID expertise (Flynn, 2010).

The author believes that it does not really make sense to artificially separate behavioral problems from mental health problems, nor indeed the care of the more severely intellectually disabled from those with milder ID. Any service dedicated to managing challenging behaviors in people with ID will always need access to medical input, including physical health assessment and medication, and sometimes inpatient care, no matter how well the behavioral management and environment can be improved. However, given the widespread enduring binary thinking discussed previously, those staff primarily concerned with challenging behavior without diagnosable mental illness might sometimes and in some areas be best placed separately from those dually trained staff working more embedded within mental health services. Although this is perhaps not ideal as a somewhat “forced” choice, it is not really possible in practice to be “all things to all people” when attitudes to dual diagnosis continue to be so resistant to change. In the end there are pros and cons to most service models, but what matters ultimately is that services, however they are configured, have clarity of purpose and clear care pathways that are understandable to everyone, including service users and carers, and clinicians who are not dually trained.

Perhaps mental health of ID staff can benefit paradoxically from the dedicated ID services in this era being as yet so undeveloped and, thus, perhaps less likely to be “entrenched.” For example, ID services can hopefully show the way for generic mental health services in promoting meaningful service user and carer engagement and inclusion. Staff that work with people with ID are confronted with communication issues daily. It is, therefore, regularly and explicitly acknowledged in ID services that a major part of successful practice is thinking how to engage and to work with these communication difficulties. Being on a smaller scale and invariably containing committed individuals inspired to make positive changes, ID services can often be the forerunners of innovative practices. In this vein, mental health of ID clinicians and services should be in the vanguard of making smoother the care pathway transitions between inpatient and community mental health care, to make the reality of seamless “in-reach” and outreach between community and hospitals as the standard for health care in the 21st century.