Inpatient mainstream and specialized services

Many individuals with ID present with comorbid mental health issues, putting them at greater risk for inpatient admission. Given the heterogeneous and complex nature of this population, many individuals with ID are admitted to specialized inpatient units to receive treatment tailored to their needs; however, a large number of these individuals are still admitted to mainstream services. Although there are many demographic similarities between individuals admitted to the two service models (Xenitidis et al., 2004; Hemmings et al., 2009; White et al., 2010), there remain some key clinical differences. In general, male patients account for the majority of admissions to both types of services (Alexander et al., 2001; Hemmings et al., 2009). Individuals with ID in both inpatient units tend to be under the age of 50, with the majority in their 20s to mid 30s (Lunsky and Balogh, 2010; Bakken and Martinsen, 2013); however, those admitted to specialized units tend to be younger than those in mainstream units (Lunsky et al., 2010). Individuals with ID admitted to specialized inpatient units are typically living with family (Hemmings, et al., 2009), single, and have an unstable employment history (Lunsky et al., 2008). The majority of studies report that level of ID does not differ between inpatients with ID in mainstream and specialized units, with most inpatients having mild to moderate ID in both programs (Hemmings et al., 2009; Charlot et al., 2011; Bakken and Martinsen, 2013). However, Alexander et al. (2001) found that individuals admitted to specialized inpatient units were more likely to have severe ID. Aggression is the primary reason for referral for those admitted into both programs (Lunsky et al., 2008; Charlot et al., 2011), but other problem behaviors, such as self-injury, risk to self and others, and property destruction, are also frequent reasons for admission (White et al., 2010; Charlot et al., 2011). In terms of psychiatric diagnoses, individuals with ID who also have a diagnosis of autism spectrum disorders (ASD) or a comorbid mood disorder are more likely to be admitted to specialized inpatient programs (Alexander et al., 2001; Lunsky et al., 2008; Charlot et al., 2011), while those with a psychotic disorder or addiction issues are more likely to be admitted to mainstream programs (Lunsky et al., 2008; White et al., 2010). The one large-scale study comparing patient profiles in the two types of services reported that inpatients in specialized programs were rated as requiring more intensive mental health supports than those in mainstream programs (Lunsky et al., 2008).

Outpatient mainstream and specialized services

Less is known about the demographic and clinical profiles of individuals with ID in outpatient mainstream and specialized services, as few studies have specifically examined and compared the patient profiles of these two services. Findings from this limited literature demonstrate that similar to inpatient services, differences exist between mainstream and specialized outpatient programs. Specifically, outpatients in specialized programs tend to be younger, male, single (Lunsky et al., 2011), living at home with family at time of referral (Russell et al., 2011), and present with disruptive or aggressive behavior as the primary reason for referral (Russell et al., 2011). In terms of psychiatric diagnoses, one study found that individuals in specialized programs were more likely to have a mood or anxiety disorder, whereas those in mainstream programs were more likely to have a psychotic disorder or comorbid medical issues (Lunsky et al., 2011). In this study, outpatients in specialized programs also had more intensive mental health care needs than those in mainstream programs.

Inpatient mainstream and specialized services

Across countries and studies, individuals with ID in specialized inpatient settings consistently document greater clinical improvement (i.e., psychopathology, severity of mental health symptoms, behavior impairment, or level of functioning) compared to individuals in mainstream settings (Xenitidis et al., 2004; Hall et al., 2006; White et al., 2010; Gabriels et al., 2012). Positive outcomes have also been described by caregivers, hospital staff, and patients receiving specialized services (Longo and Scior, 2004; Parkes et al., 2007; Samuels et al., 2007; Siegel et al., 2014). For mean length of stay (LOS), studies comparing specialized and mainstream inpatient services remain varied. Some studies report a shorter mean LOS for inpatients with ID in specialized inpatient units (Gabriels et al., 2012), others a longer mean LOS (Alexander et al., 2001; Xenitidis et al., 2004; Hemmings et al., 2009; White et al., 2010), and some no differences (Addington et al., 1993; Burge et al., 2002). These differences may be explained, in part, by variation in the clinical characteristics of the populations studied. Related to readmission rates, a US study of children with ASD and ID reported lower one-year readmission rates in a specialized versus mainstream psychiatry unit (Gabriels et al., 2012). At discharge, inpatients in mainstream settings were more likely to return to the family home (Hemmings et al., 2009), while inpatients in specialized settings were more likely to be discharged to out-of-area placements (Xenitidis et al., 2004). In Ontario, inpatients with ID receiving care in specialized units were also more likely to have medications reduced at discharge compared to inpatients receiving mainstream services (White et al., 2010).

In terms of quality of care and satisfaction with services, results for specialized and mainstream inpatient services have been mixed. Findings of a UK study examining three specialized ID units and seven mainstream psychiatry wards identified a number of positives and negatives for each service (Longo and Scior, 2004). While specialized units were described as positive, caring, and practical, these units left some patients feeling isolated. Mainstream wards, by contrast, were described as supportive of peer relationships, but left some patients feeling disempowered and vulnerable. Caregivers rated specialized units more positively because of good discharge planning and clear/open communication, while mainstream units were rated more negatively because of poor discharge planning and concerns for safety.

Outpatient mainstream and specialized services

We know less about outpatient care, despite the fact that most individuals receive care in outpatient rather than inpatient settings. Part of the reason for this is because of significant variation in outpatient programs, both mainstream and specialized, making comparisons difficult. In some jurisdictions, “mainstream psychiatric care” simply means that an individual with ID receives a consultation from a psychiatrist, but receives most of their mental health care otherwise, from their family doctor. One type of outpatient psychiatric service could be psychotropic medication prescribing and monitoring, which is quite common for the ID population (Cobigo et al., 2013). Mainstream psychiatric outpatient care may also refer to more enhanced outpatient services, such as assertive community treatment (ACT), or a combination of medication monitoring and psychotherapy. Some research has shown that enhanced clinical services, for example intensive case management, have greater benefits for individuals with ID than individuals without ID. In the UK700 trial, adults with mild ID or borderline IQ who received intensive case management had reduced hospital admissions, fewer days spent in hospital, lower costs, and greater satisfaction than adults who received standard case management only (Hassiotis et al., 2001). This difference was not evident for individuals without ID in the same trial.

Outcomes for patients with ID in specialized outpatient settings are generally positive, with a number of studies reporting improvements in adaptive and maladaptive functioning (Coelho et al., 1993), increased patient satisfaction, and decreased use of inpatient services (Holden and Neff, 2000). For example, results of a randomized controlled trial of a specialist behavior therapy team for adults with ID and challenging behavior resulted in significant reductions in challenging behavior and hyperactivity (Hassiotis et al., 2009). Findings also demonstrated that specialist behavior therapy in addition to psychiatric treatment was more effective in reducing aggressive behavior than psychiatric treatment alone. Two studies of individuals with ID receiving either ACT or standard community treatment (Martin et al., 2005; Oliver et al., 2005), failed to find differences in patient functioning, carer burden, and unmet need across services; however, eligibility constraints and similarities between ACT and community services, may have impacted the studies’ ability to detect differences. There is emerging evidence that providing specialized psychotherapy interventions can benefit individuals with ID (Vereenooghe and Langdon, 2013), but very few studies have compared whether manualized interventions for those with ID are more effective than mainstream outpatient care.

Mainstream inpatient and outpatient services: strengths and limitations

There is considerable debate over the adequacy and suitability of mainstream inpatient and outpatient services for individuals with ID. While mainstream services have certain advantages, they also come with considerable limitations. The most obvious and arguably significant strength of mainstream services is their capacity to serve and support a large number of individuals with ID. It has also been argued that mainstream services may be less stigmatizing for patients with ID (Chaplin, 2004; Hemmings et al., 2009). Limitations of mainstream services include lack of training and expertise in ID, inadequate resources to modify or support patients with cognitive limitations, and unsupportive or unhelpful staff attitudes (Lunsky et al., 2006; Jess et al., 2008; Chaplin, 2009, 2011; Hemmings et al., 2009). Mainstream services have also been criticized for their inability to serve patients with ID who have complex needs (e.g., behavior challenges, comorbid medical or psychiatric issues, communication impairments, severe or profound ID) and who, as a result, may require more intensive or individualized treatment.

Specialized inpatient and outpatient services: strengths and limitations

One of the major advantages of specialized services is their size and staff-to-patient ratio. Specialized services tend to be smaller and have a higher staff-to-patient ratio than mainstream services, which better facilitates client-centered care, patient safety, and allows services to be individually tailored to patient needs and level of cognitive or adaptive functioning (Xenditidis et al., 2004). Specialized services also employ interdisciplinary teams with knowledge, experience, and expertise working with individuals with ID and comorbid mental health issues (Chaplin, 2009, 2011).

Although there is substantial literature supporting the effectiveness of specialized services, certain disadvantages must also be considered. Specifically, specialized services do not typically have the capacity to service everyone who is referred. Similarly, given that individuals in specialized programs sometimes have longer length of stays, this can translate into longer wait times for patients awaiting services (Mackenzie-Davies and Mansell, 2007). While specialized services typically involve professionals who have more experience in ID, some specialized programs have encountered difficulty with staff retention (Mackenzie-Davies and Mansell, 2007). Specialized units exclusive to patients with ID can be very stressful, particularly when aggression, the most common reason for referral, is high (Hensel et al., 2014). Lastly, specialized services do not build capacity in mainstream services, and may in fact reduce the skills of healthcare providers outside these programs over time (Mackenzie-Davies and Mansell, 2007).