Introduction

Across settings newcomers tend to have better health than non-newcomers (“Healthy Immigrant Effect”)[1]. They also tend to use health care services less frequently than non-newcomers [2], although results related to their use of primary care are mixed [3]. Research and service planning attention are increasingly being devoted to newcomer health, but the needs of newcomers with disabilities remain largely unknown.

While newcomers with disabilities have been underrepresented in research, newcomers with intellectual and developmental disabilities (IDD), such as Down syndrome or autism are even less understood. Recent Canadian prevalence studies have suggested that IDD occurs in approximately 0.5% to 1% of the adult population [4–6]. It is important to focus on newcomers with IDD because IDD is associated with greater morbidity and individuals with IDD experience challenges accessing timely and appropriate health care [1,2]. Some of their difficulties may be related to communication, social skills and problem-solving deficits, which can affect their health issues as well as how they access care [7–9].

Planning that considers the needs of newcomers with IDD requires knowledge of the size of the group. In accordance with the healthy immigrant effect that suggests that many health conditions are less prevalent among newcomers, we expected a lower prevalence of IDD among newcomers than native born persons. This effect is partially attributable to country’s newcomer selection policies that often preclude those with disabilities from being admitted. In Canada this policy stems from the excessive demand clause of the Immigration and Refugee Protection Act (IRPA)[10] that is used to justify the rejection of some newcomers whose expected use of health or social services would likely exceed average Canadian per capita costs for five years. We refer to the group of newcomers that is affected by this policy as ‘screened’ newcomers. However, for some immigrants the decision about whether they are eligible for admission does not depend on their health and social service utilization. Specifically, a proportion of newcomers are typically exempt from this clause, which makes them eligible to become permanent residents irrespective of their health and social service use. We term this group of newcomers as ‘not screened’. Although the excessive demand clause prevents many screened newcomers from arriving or remaining in countries like Canada, the precise prevalence rate is not known. It is difficult to fill these knowledge gaps because population-level data are rarely available on either newcomers or people with IDD. Consequently, despite the policy debates and/or media attention on this issue in several countries (e.g. Canada, Australia, New Zealand, USA) [7–9,11,12], the absence of knowledge about the size of the population of newcomers with IDD and their demographic or health care use profiles has impeded the development of polices to support this group.

Although no individual level studies have compared the prevalence of IDD between adult first generation newcomers and non-newcomers, we found three studies that used convenience samples to report on prevalence. An ecological study showed that in Haute-Garonne, France the prevalence of IDD was higher in areas with a higher concentration of immigrants [13]. Conversely, a study in Leicestershire, United Kingdom on persons over 50 years of age showed a lower prevalence of IDD among South Asian first-generation immigrants compared to White individuals whose immigrant status was not stated [14]. Similarly, a US study observed that a group comprised both of children born outside of the US and US-born children with immigrant parents had a lower prevalence of developmental delay and learning disability than US-born children with US-born parents [15].

To complement the few studies on prevalence of IDD among newcomers [13–15], we found two papers on health and health service use of newcomers with IDD [16,17]; both provided case studies on immigrant families that include a member with a disability. These case studies noted an absence of services targeted to newcomers with IDD. This may be because although resettlement services are versed in mental health and addictions support, they are not versed in IDD support. At the same time, disability services are not focused on newcomer issues. Both studies [16,17] also reported the challenge of the family members not being included in their adult child’s health treatment. This is in contrast to what they were used to in their country of origin where families of adults with IDD were more involved. Challenges accessing appropriate services for newcomers with IDD can be compounded by the individuals’ deficits associated with their IDD, and limited English proficiency [16,17]. Given the challenges with using existing services, one of the case studies [16] noted a need to develop innovative services to support the health needs of newcomers with IDD, as well as their families. However, targeting services to this group requires knowledge of how many newcomers have IDD, what their health issues are, and how these needs compare to other newcomers. This study begins to fill this gap by providing information on newcomers with IDD in Ontario, Canada.

The first objective is to compare the prevalence of IDD among newcomers versus non-newcomers, overall and by age group. We hypothesize that the prevalence of IDD would be lower for newcomers overall because it is hard for those with IDD to move and start a new life in Canada, and because some newcomers would not be permitted to enter due to the excessive demand clause of IRPA described above. We expect this to be observed for all age groups.

Additionally, we explored the prevalence of IDD for newcomer groups with different eligibility criteria (screened, not screened) and with different lengths of time since immigration to Canada (arrived in Canada more than five years ago, arrived more recently) to the prevalence of IDD among non-newcomers.

The second objective is to compare the health status and health service use of newcomers with IDD to newcomers without IDD. We hypothesize that newcomers who have IDD will have more comorbidities and service utilization than other newcomers, which is consistent with the profile of people with IDD in the general population.

There is a unique opportunity to study this topic in Ontario, Canada due to the ability to link health service utilization data across health sectors, and because recent data partnerships permit the linkage and study of population data on adults with IDD and on newcomers.

Methods

Results

Prevalence of IDD among newcomers and non-newcomers

IDD prevalence was lower in newcomers overall relative to non-newcomers overall, based on the standardized difference 0.10 threshold, and all comparisons were significant based on p-values (p-values<0.0001) although the discussion is driven by standardized differences [Table 1]. When prevalence was examined by age group, the youngest adults (aged 19–25 years) had the highest prevalence of IDD across newcomers and non-newcomers; this prevalence was still lower among newcomers compared to their non-newcomer counterparts. When comparing the prevalence of IDD between non-newcomers and newcomer groups with different eligibility criteria and with different lengths of time since arrival, newcomers not screened at arrival and newcomers who arrived less than five years prior to April 1, 2010 had lower prevalence of IDD based on standardized differences. In comparisons of the subgroups of screened newcomers and subgroups of newcomers arriving more than five years earlier, the standardized differences were just below 0.10 and therefore were not considered meaningful differences.

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Table 1. Prevalence of intellectual and developmental disabilities (IDD) per 100,000 population among newcomers versus non-newcomers (i) overall, (ii) by age group, and within newcomer groups, (iii) with different eligibility criteria, and (iv) with different lengths of time since immigration to Canada, aged 19–65 years in Ontario, Fiscal year 2010.

https://doi.org/10.1371/journal.pone.0215804.t001

Profiles of newcomers with and without IDD

Demographic characteristics.

Among newcomers, compared to those without IDD (n = 1,646,803), adults with IDD (n = 2,830) were more commonly younger (19–25 years: 29.8% vs. 10.6%), male (52.7% vs. 48.2%), and living in neighbourhoods in the lowest income quintile (31.7% vs. 27.7%) [Table 2]. Newcomers with IDD were also more likely to be admitted as refugees (20.5% vs. 16.0%) and less likely to be admitted in the economic class (37.1% vs. 49.3%) compared to newcomers without IDD.

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Table 2. Sociodemographic and immigration characteristics of newcomers with and without intellectual and developmental disabilities (IDD), for adults aged 19–65 in Ontario, FY 2010.

https://doi.org/10.1371/journal.pone.0215804.t002

Physical and mental health profiles.

Compared to newcomers without IDD, newcomers with IDD had a higher age- and sex-adjusted prevalence of all the physical and mental health conditions examined [Table 3]. The greatest differences were for psychotic disorders (aRR: 23.26, 95%CI: 21.22–25.50), co-occurring mental health and substance use (aRR: 6.11, 95%CI:5.12–7.30), substance use (aRR: 3.26, 95%CI:2.77–3.84), congestive heart failure (aRR: 2.74, 95%CI:1.55–4.82), and chronic obstructive pulmonary disease (COPD) (aRR: 2.11, 95%CI:1.68–2.66).

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Table 3. Adjusted prevalence/risk ratios for physical/mental health profiles and health service use of newcomers with and without intellectual and developmental disabilities (IDD), for adults aged 19–65 in Ontario, FY 2010.

https://doi.org/10.1371/journal.pone.0215804.t003

Health service use.

After adjusting for age and sex, compared to newcomers without IDD, newcomers with IDD were more likely to visit primary care physicians, psychiatrists, and other specialist physicians and to have any ED visits, five or more ED visits, any hospital admissions, and two or more hospital admissions [Table 3]. The most marked differences were that newcomers with IDD were more likely to make at least one psychiatry visit (aRR: 9.32, 95%CI:8.62–10.08), make five or more ED visits within a year (aRR: 5.92, 95%CI:4.63–7.57), and have 2 or more hospitalizations (aRR: 2.47, 95%CI:1.67–3.66).

Discussion

This is the first study to examine the prevalence of IDD among first generation adult newcomers. The prevalence of IDD was significantly lower among newcomers than non-newcomers in Ontario, Canada. Among newcomers, those with IDD had a higher prevalence of a range of physical and mental health conditions, with marked differences in rates of psychotic and concurrent disorders. Moreover, newcomers with IDD were also significantly more likely to use psychiatry services and have frequent ED visits and hospitalizations than newcomers without IDD.

As noted above, the overall lower IDD prevalence among newcomers may be due to a combination of newcomer self-selection and/or Canadian government selection policies that lead to healthier newcomers (i.e., without IDD) being admitted to Canada, which are also two factors that have been used to explain the healthy immigrant effect. Although rates of IDD were similar for both screened and not screened newcomer groups, rates were lower among newcomers who were not screened at arrival. Since this group is composed of refugees and family members of permanent residents who are typically less physically and financially ‘fit’ than other newcomers [21], these groups may have fewer resources and worse health than newcomers in the screened group that makes arriving in Canada more difficult. One possibility is that newcomers who are not screened are more likely than screened newcomers to come from English speaking countries with service systems that resemble Canada’s health and social services, thereby increasing the likelihood that they use these services upon arrival and that their IDD diagnosis is identified in health and social service databases.

The higher medical and psychiatric comorbidity in people with IDD is consistent with research findings from Ontario and elsewhere on the broader IDD population [37–39]. This difference may be driven in part by unusually low rates of disorders and service use in the comparator group of newcomers without IDD. Lower rates of disorders and service use are consistent with the ‘Healthy Immigrant Effect’ [40–42], although the health advantage normally observed among newcomers may not apply in the same way to those with IDD, although comparing newcomers and non-newcomers with IDD is beyond the scope of this study [16]. However, the rates of psychotic disorders reported for the IDD newcomer group reported in this study are noticeably higher than what is reported for adults with IDD generally. While it is possible that some of this relates to the impact of pre-migration and resettlement stressors, it is also possible that psychotic disorders are being misdiagnosed, at least in some newcomers [43–45]. Diagnosing psychotic disorders can be difficult even in adults with IDD who do not have cultural or language barriers, especially when they have limited verbal ability [46]. On occasion behaviours that appear to be psychotic in nature actually reflect a person’s response to stress and/or being in unfamiliar circumstances [47], and may be better captured by a different diagnosis. For example, difficulties diagnosing psychotic illness in people with autism have been noted [48]. Specifically, it has been suggested that autism may be misdiagnosed as schizophrenia [49] and case studies have shown this can happen specifically in newcomers with IDD [50]. More in depth research is warranted on the prevalence of psychotic disorder, and the challenges with diagnosing them in newcomers with limited English as well as verbal ability.

In terms of health care use, newcomers with IDD were more likely to use psychiatric services and be hospitalized. The higher rates of psychiatrist visits may indicate an ability to access psychiatry at a similar or higher rate to others. However, the crude measures reported here do not provide information on the quantity or quality of such encounters. The quality of these services may be a particular issue for newcomers. Due to their unique cultural and resettlement experiences, they may struggle more than non-newcomers to find a psychiatrist they consider helpful. Few psychiatrists specialize in treating adults with IDD in Canada, so finding a psychiatrist with expertise in newcomers and IDD is highly unlikely [51,52]. Alternatively, newcomers with IDD may choose to delay help-seeking due to fears that they will experience even greater discrimination due to having multiple disadvantaged statuses and/or fears they will be given instructions for follow up care (e.g., medications) without explanation or support [53]. If accessing health services is delayed (for any reason), when services are finally accessed, an individual’s acuity may be higher, potentially leading to greater use of ED visits, admissions and repeat ED and hospital visits [54]. Longitudinal studies would help elucidate these help seeking patterns over time [55].

Newcomers with IDD are more likely to present with health issues than other newcomers once in Canada. These results emphasize the need for newcomers with IDD and their families to be able to access appropriate supports upon arrival. These additional supports could support the health–and particularly the mental health–of newcomers with IDD. For example, these may include increasing the availability of culture-specific interpreter services at health care settings, or increasing access to psychiatrists familiar with particular cultural experiences, but can also include linkages to disability related supports. The recognition of IDD and provision of appropriate supports to newcomers can contribute to health and wellbeing, driven by success in school, employment, and meaningful daytime activities.

We need more research to explore how health care and social services can meet the needs of newcomers with IDD. For example, supporting the health of newcomers with IDD requires different practices than others with IDD, such as providing interpreter services and culturally sensitive explanations of health issues related to IDD and its comorbidities. Training health care providers on issues unique to newcomers, and increasing newcomers and immigration service workers knowledge of Canadian disability accommodation rights and laws are also priorities [56].

Conclusion

Given the knowledge gap related to newcomers and disabilities, particularly IDD, this population-based study is an early step toward building an evidence base. Present findings suggest a much lower prevalence of IDD among newcomers compared to Canadian-born persons. Self-selection may be a contributor to these findings, however, it was not possible to estimate the effect of Canadian selection policies on the exclusion of newcomer applicants with IDD.

Newcomers with IDD would likely benefit from additional supports being made available shortly after their arrival since adult newcomers living in Canada experience more mental health conditions, greater psychiatry visits and greater hospital use than other adult newcomers in Canada.

Supporting information

Acknowledgments

The authors wish to thank Immigration, Refugees and Citizenship Canada and the Office of the Registrar General for providing data to ICES, where the analyses were conducted.

The authors would like to thank Dr. Robert Hickey for his valuable insight.

This study is part of the Health Care Access and Developmental Disabilities Program and was supported by a Partnerships in Health Systems Improvement grant from the Canadian Institutes of Health Research using data provided by the Ontario Ministry of Health and Long-Term Care (MOHLTC), the Ontario Ministry of Community and Social Services, and the ICES. ICES is supported in part by the MOHLTC. The opinions, results, and conclusions reported in this paper are those of the authors and are independent of the funding sources. No endorsement by ICES, or the Government of Ontario is intended or should be inferred.

Parts of this material are based on data and information compiled and provided by the Canadian Institute for Health Information and Cancer Care Ontario (CCO). However, the analyses, conclusions, opinions, and statements expressed herein are those of the authors, and not necessarily those of the Canadian Institute for Health Information or CCO. No endorsement by CCO is intended or should be inferred.

The Johns Hopkins ACG system Version 9 was used for the research.