Abstract

Although Ontario has closed the regional centres that were intended for people labelled with intellectual disabilities and apologized to survivors, the institutionalization of disabled people persists in other forms in the province. This article demonstrates that the eligibility criteria established by privately-operated and publically-funded group homes contributes to the use of what will be termed 'back ward' placements in institutions such as hospitals and nursing homes. While group homes themselves have been – quite rightly – criticized as neo-institutional forms of residential support, they also play a role in shaping more overt forms of confinement by refusing to tailor their services to the needs of certain individuals. What follows is an analysis of residential support systems that builds upon case studies and reports to expose how impairment hierarchies, based on ranked support needs, determine who will end up in these 'back wards' and who will be offered a place in a group home.


I Spent the First 20 Years of My Life Fighting to Get Out of an Institution, Only to Spend the Rest of It Keeping the Institution from Descending Upon Me 1

The Ontario Government has apologized for the atrocities that took place in the many regional centres that were designed and managed by the province to confine people who had or who were thought to have had intellectual disabilities. 2 Yet many people who bear this label are still facing a human rights crisis through the phenomenon known as transinstitutionalization. Although it takes many forms, transinstitutionalization can occur when group homes situated within communities replicate custodial models of care and fail to respect the rights and entitlements of residents. Group homes are the dominant mode of housing and supporting people labelled/with intellectual disabilities in Ontario, but there is strong reason to believe that such arrangements reflect the same prejudicial assumptions around disability that have long sustained the role of segregated institutions. Individuals may experience transinstitutionalization in still more overt ways, through practices that result in their direct confinement in medical institutions such as hospitals. Indeed, evidence suggests that labelled people can be housed in medical institutions for indefinite lengths of time, sometimes for many years and without medical cause. This article brings together evidence that is already on the public record to argue that transinstitutionalization in the explicit form of hospital confinement is a logical outcome of a service system that penalizes individuals with higher support needs. The two modes of transinstitutionalization that will be addressed – confinement in institutions, such as hospitals, as well as 'institutions without walls', 3 such as group homes – are linked phenomena that participate in the denial of appropriate housing options, basic supports, and opportunities for people labelled/with intellectual disabilities in the community. These structured exclusions continue the historical trend of building back wards for those perceived as being the 'most disabled', assigning them differential forms of treatment, within disability support systems.

Even while transinstitutionalization contravenes the spirit of governing human rights legislation, 4 the point of crisis that is repeatedly declared by service users, government and oversight bodies, and news media, risks becoming naturalized. Many individuals labelled/with intellectual disabilities, along with their families and allies, face life and death issues related to systemic violence and neglect, while government exhibits a level of patience and comfort with these well-known risks. To understand this tolerance on the part of decision-makers, we must consider the role of cultural values that shape perceptions and preconceptions of people labelled/with intellectual disabilities. By considering eligibility practices within the context of crises reported by the media, Ontario's Ombudsman, and other research bodies, this article exposes key assumptions around intellectual disability and demonstrates how intellectual disability is administered and regulated through decisions made about group home placements. An analysis of government publications and media stories suggests that group home agencies in Ontario are legally permitted to withhold services from individuals who are most in need, on the paradoxical basis that their very level of need makes them ineligible. Personal accounts reveal that even residents who manage to get their foot in the door of a group home, sometimes live in fear of losing housing and support services. All the while, these service exclusions are justified through medical assessments that label certain individuals as 'more disabled,' ultimately contributing to broader trends that segregate people who are thought to have 'severe' intellectual disabilities within back ward placements. The policy context in which these decisions are enabled and justified is post-2008, which is the year that marks the creation of the Social Inclusion Act: Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act (hereafter referred to as "the Social Inclusion Act" or simply "the Act"). The adverse impact of the Act will be considered at various stages through a discussion of case studies and processes.

Methodology and Limited Knowledge Claims

Following Licia Carlson, this paper begins with the insight that in certain contexts where intellectual disability is experienced and where people communicate in ways that are not apparent to those outside their immediate network, self-advocacy may be supported through the close allyship of a trusted relative or friend. Carlson explains that in these situations, "there are other 'knowers' who are in close relation to these individuals who might be able to bring this standpoint to the foreground." 5 While positioning myself as a researcher who occupies a role similar to that which is described by Carlson, I do not attempt to 'authentically' represent the experience of living with a label; rather, I imagine that much insight can flow from this relational standpoint while acknowledging that there are many epistemic pitfalls. The limitations of this experience – namely that it is not immediate and lacks important knowledge that comes from being labelled with or from having an intellectual disability – are recognized, and it is intended that future work will be closely informed by interviews with people labelled/with intellectual disabilities, and, in certain situations, with allies who can support individuals in expressing themselves. Such interviews will be necessary to confirm or refine this article's findings and to reflect more accurately the experiences of people labelled/with intellectual disabilities. It has already been noted that Ontario is not collecting appropriate data on disability services that are intended for people labelled/with intellectual disabilities, 6 and, as a result, these data gaps make media coverage and Ombudsman reports incredibly valuable. With these qualifications in mind, what follows is intended only as a preliminary discussion and incomplete perspective on a current and urgent issue, while closer study of these practices will need to include more perspectives, and above all else, those of self-advocates who are closely affected by the structures that are under scrutiny.

Locating the Back Wards

The present study is primarily informed by an analysis of experiences captured in various stories and reports and supplemented by a close reading of related legislation. Of particular concern are the experiences of individuals who are excluded through current approaches to inclusion. Often, these are individuals who experience communication barriers, who are denied legal capacity, and who are considered to have 'profound' intellectual disabilities. Individuals labelled/with intellectual disabilities who are eligible for Ministry-funded housing may nevertheless be denied entry into group homes based on assessments that interpret their needs as exceeding the capacity of a given housing service agency to provide support. These subjective and unregulated assessment standards vary from housing agency to housing agency, but they are often based on a perceived 'degree' or 'severity' of disability. The outcome of these eligibility standards, as suggested by the many examples discussed in this article, is the differential treatment and denial of services to those who demonstrate the greatest support needs, even when they are experiencing severe crises.

The decentralized nature of service provision has translated into a lack of consistent standards in terms of quality of support as well as access to supports. In Ontario even the process for assessing the urgency of need varies from region to region. 7 Individuals who have or who are perceived as having high support needs may be seen as 'high risks' representing 'high costs', and media reports and Ombudsman findings suggest that they are more likely to be assigned to the back wards of the system – that is, hospitals, nursing homes, shelters, jails, and other explicitly institutional settings that continue to play a warehousing role, despite Ontario's commitment to deinstitutionalization. A 2014 report by Ontario's Select Committee On Developmental Services touches on the fiscal and human expense of back ward placements: "young people with developmental disabilities may be placed in psychiatric wards, hospitals or long-term care homes – placements that are expensive, unsuited to individual needs, and lacking in individual choice and person-first planning." 8 Despite these problems, the practice of back ward placements continues, with the Ombudsman reporting 250 such cases in 2016. 9

Disability historian Philip Ferguson's understanding of the back ward as a place where individuals who were thought to have severe intellectual disabilities, often labelled as incurable, were warehoused within institutions, remains relevant to our understanding of existing eligibility criteria for disability supports. Ferguson explains that the back ward was not an accidental but intentional space, as it was "an identifiable place where people with the most significant intellectual disabilities were to be incarcerated and largely forgotten." 10 These individuals were thought of as custodial cases and thus custodialism, rather than support, came to characterize their treatment. Addressing the logic of the back ward system, Ferguson writes, "there is an appropriately segregated placement for truly disabled persons." 11 Central to the concept of the back ward as an intentional place that exists by design, rather than by accident, is its continual presence as a place of punishment and surveillance where, through the monitoring of residents, a constant assessment process takes place. As this paper will suggest, assessments not only determine eligibility for placements in the community which, regardless of their institutional features, are more preferred than the back wards, they also determine a resident's eligibility to remain in these settings. Even after achieving entry into a group home, reports suggest that an individual may be expelled to the back wards if an agency decides they can no longer meet their needs. In communities of service recipients, this practice is sometimes referred to as 'dumping' or 'eviction', and it could quite understandably constitute a threat to the well-being and sense of safety and stability of the targeted person.

We can understand the creation of back wards in Ontario through the practice of hospital confinement and group home eviction in the policy context shaped by the 2008 Act. The existence of back wards, in this sense, contributes to the ongoing critique that the Ontario government has failed to fully deinstitutionalize or redress the legacy of institutionalization by providing a dignified and individualized approach to service delivery and housing in accordance with the UN Convention on the Rights of Persons with Disabilities. The next section of this paper will analyze confinement in relation to group home assessment processes and present these assessments as a continuous form of monitoring that works against the interests of individuals. Special attention is given to acts of displacement that are based on determinations of ineligibility and that appear to result from ongoing monitoring once an individual gains entry into a home. It is hoped that examples of the lived consequences of subjective assessment criteria and one-sided decision-making processes will strengthen proposals for new housing and funding models by identifying some of the barriers that exist within current approaches and within the Social Inclusion Act itself. In what follows, these barriers are framed as symptoms of broader trends in disability discrimination that are linked to a political economy of manageability.

The Scope of Residential Service Provision: TPAs and Hospital Beds

The approach taken throughout this discussion does not emphasize funding or the need to increase resources because these goals are taken as a given. While funding represents an undoubtedly important deficiency, it is helpful to qualify claims by government that it lacks resources or the capacity to meet individual support needs by emphasizing the discriminatory values revealed through existing distributional methods. The distribution of existing housing resources is partly shaped by the eligibility practices of independent agencies and implicitly condoned by the Ministry of Community and Social Services (hereafter MCSS), the government agency responsible for housing and supports for people labelled/with intellectual disabilities in Ontario. Thus multiple stakeholders are complicit in creating punitive back wards. Self-advocate organizations such as People First Canada as well as groups allied with labelled people have proposed alternatives to Ontario's housing system, many of which are more commonly practiced in jurisdictions in British Columbia. 12 The president of one of the most prominent self-advocate movements in Ontario, Richard Ruston of People First, explains the importance of restructuring housing supports in a recent video release, stating that, "it's one of People First's goals and this is something we still fight for today. A real home is very important because it's not a group home". 13 Advocates have argued for more direct control of supported housing by individuals labelled/with intellectual disabilities and their families, but this solution has yet to be accepted by government. As the fight for broader political acceptance of these critiques and solutions continues, it will be useful to consider the failure of the current housing system in further detail so that its harmful qualities are not yet again replicated.

In Ontario, group homes remain the favoured approach to housing for people labelled/with intellectual disabilities, 14 receiving approximately 78% of budget funding for residential services. 15 Between 2013 and 2014, the government of Ontario spent $1.16 billion on 240 not-for-profit agencies who "provide residential accommodations and supports" mostly to adults labelled/with intellectual disabilities and mostly in the form of group homes. These housing agencies are privately managed organizations that hold charitable status; they are funded by the province through MCSS and they are referred to within Ontario's developmental sector as Transfer Payment Agencies (TPAs). TPAs are only loosely, if at all, regulated. The Auditor General found that 45% of residences at the time of writing had gone uninspected since 2010. Among the sample of those that are annually inspected, an average of 24 days' notice is given by MCSS, making it easy for TPAs to prepare for these visits. The Auditor General Report also explains that "[c]are standards are few and open to interpretations," and that serious incidences (including injury) go underreported. While some individuals may be happy with their group homes, this does not negate the fact that others are at risk of abuse and injustice due to these systemic problems. Compounding these risk factors is the fact that residents have no recourse to complaint mechanisms. 16 For these reasons, good supports must be seen as incidental, because they are not guaranteed through policy.

In addition to the lack of individualized housing supports, people labelled/with intellectual disabilities are being re-institutionalized through the hospital system – a site of medical confinement that continues a long tradition of segregation. In his 2014-2015 annual report, Ontario's Ombudsman describes the prevalence of this practice, reporting "a surge in complaints to our Office about urgent, disturbing cases where adults with severe special needs were ending up in jail, homeless shelters and hospitals, because no care or services were available for them". 17 The report includes the example of a healthy 33-year-old man who had been residing in a hospital for 7 years. While official numbers from this report cite 17 people as discharged from hospitals and placed in group homes, a news article written two months prior that claims that 19 people continue to reside in a single hospital in Ottawa alone, 18 helps keep these numbers in perspective, suggesting that 17 province-wide discharges might be a negligible figure. Even more telling is the 2016 Ombudsman report, which describes that "Ontario's general hospitals and psychiatric units have become hosts to hundreds of adults with developmental disabilities." 19 The same report, under a heading titled "Institutionalization by Default," states that 250 individuals are living in hospital and long-term care facilities. 20

Researchers have argued that the primary motivation behind the Ontario government's willingness to deinstitutionalize housing relates not to humanitarian concerns, but to fiscal expediency: the costs of expanding large institutions were thought to be more expensive than the costs associated with devolving those services to organizations who manage housing supports in the community. 21 Yet when hospital confinement takes place, government pays more. Proponents of community living have tirelessly pointed out the prudency of ending this practice: the costs of hospital confinement, in some cases at $456,250 per year or $1250 a day, tend to exceed the costs of supporting someone to live in the community, which, for a group home for one adult, ranges from $21,400 to $310,000 per year. 22 This comparison raises an important contradiction between the economic incentive that has been linked to devolving services and the additional public expenses that are incurred through privatizing care. The best way to explain how a cost-cutting system is, in many cases, paying more to support people, is to take a closer look at the privatized and loosely regulated nature of these services. By considering privatization in the context of dominant assumptions around disability that inform impairment hierarchies, which position people as being 'more' or 'less' disabled, we can better understand service denial and differential treatment. Media reports suggest that hospitalized individuals are people who are rejected for housing placements by TPAs. These rejections appear to be based on the real or perceived degree of the individual's disability and the estimated cost of their support needs. Thus expensive and harmful practices of back ward placements can be seen as an effect of non-governmental organizations shifting costs to government in pursuit of real or imagined savings that will come from denying services to certain individuals. This shifting of costs is allowed to take place because the current system is structured to support TPA interests by empowering them to assess candidates for services and to reject those whose support needs clash with their service capacity.

This is not to deny that the Ministry has an important role to play in shaping the fiscal constraints that impose service-related decisions on TPAs. It is certainly the case that a TPA's service capacity is limited by funding provided by government. However, and regardless of the impact of government decision-making on a TPA's budgetary concerns, the TPA occupies a position that allows it to shape the nature of supports, assess eligibility, and allocate these resources. Since discrimination against certain groups cannot be remedied through budgetary allocations alone, it is important to consider the assumptions and motivations that inform front-line decisions. This view suggests that even if service providers were awarded more generous – or even infinite – budgetary possibilities, they may still refuse a prospective client based on the belief that the supports they require are too costly or because the person is too complex and difficult to 'manage'. A context of under-funding can easily incentive and even legitimize such decision-making, but the nature of existing supports and the choice to reject a person still requires examination.

The appearance that government is spending more by funding warehousing options but doing little about it may give rise to speculation that they have little influence over the decisions of TPAs – including the admission criteria and the types of services on offer. The Ministry is more visible to the public than the individual TPAs and so in a sense they are positioned between the public and the service providers, absorbing much of the negative publicity for costly crisis situations. One would expect them to be busily working to mitigate these risks to their reputation, but it is likely that in addition to under-funding, the de-centralized nature of the system severely constrains their ability to manage crises when they arise and cause public scandal – as numerous media articles reporting on hospital confinement have done. In addition to a breakdown in management, lack of effective government resistance to costly forms of confinement can be further accounted for if we consider that housing for people labelled/with intellectual disabilities is managed by MCSS, while the cost of hospital confinement is primarily the responsibly of a separate ministry, the Ministry of Health. Given these jurisdictional arrangements, the issue of TPAs avoiding (perceived) costs is obscured by the ever-present temptation by government agencies to shift costs between one another, all of which is further exacerbated by the lack of coordination between these ministries. Lack of coordination of supports defies fiscal logic and violates human rights, as confined individuals exist in what is widely recognized as a 'warehousing' situation, experiencing neglect and deprivation. Alongside the perennial issue of government underfunding, the continuation of this warehousing situation can also be accounted for if we consider the power with which TPAs are allowed to manage their own budgets by refusing to shape services to meet the needs of individual service users.

As well as suffering from under-funding and an estimated 22-year-long wait list, the processes that shape the current system are out of step with commonly held views of disability that present individuals as rights-holders who are entitled to supports. A story headline "Rejected and Not Told Why" speaks directly to the issue of entitlement: after six years of waiting, a family's request to MCSS for funding to support a housing proposal was rejected, with no explanation given. 23 While wait times for residential supports are estimated at 22 years, it can take much longer to secure a placement and some individuals may never even reach the front of the line. In one case, a "Toronto man has been waiting an astounding 37 years for placement in a group home". 24 But the experience of facing an indeterminate and potentially infinite wait time is not simply the result of changing priorities and urgent needs displacing older ones. It is also the result of the matching processes by which TPAs approve clients for service use. Under the Social Inclusion Act, assessment processes are multi-layered and complex, and wait times and priority rankings are not the only explanation for service denial. The TPAs get the last word on suitability and their decisions can pose the final barrier to services: "ultimately it is up to individual service agencies to confirm the suitability of a match". 25 The final stage of any assessment process allows agencies to discount individuals who do not meet their expectations of suitability for service.

Since it is likely that individuals who are most in need of housing also lack additional sources of support for daily living, they are at risk of homelessness or confinement when they are rejected by TPAs. The severity of this situation is well documented, 26 as are the dangers of confinement in an environment that is by no means accessible to people labelled/with intellectual disabilities. To this point, the Ombudsman's report states, "[m]any have languished in hospital rooms for long periods with no programming or other supports." 27 News stories further expose the degradation and violence sustained through medical confinement. Take for example the recent experience of a 26 year old Ottawa man named Michael Neve, who had 26 abscessed teeth removed after months of living in a hospital and enduring what was likely severe pain. Leading up to his surgery, his sister explained in a radio interview that she had drawn attention to his teeth, but "the hospital wouldn't provide any dental services for him". 28 Michael Neve's experience provides but one example of how individuals who face communication barriers and who are labelled as having multiple, complex, or 'severe' intellectual disabilities are faring in Ontario's neo-institutional era. The violence done through neglect, resulting in the removal of Michael Neve's teeth, represents what Claudia Malacrida refers to as a routine form of violence that is common in custodial situations. In her recent study of Alberta's Michener Centre, Malacrida documents the removal of teeth as one example of how inmates' bodies can be physically altered by institutional staff, explaining that "tooth decay and gum disease were epidemic in the institutions." 29 Ontario's current Ombudsman reinforces Malacrida's critique of institutional settings when he describes that, "While in hospital, adults with developmental disabilities all too often find themselves sedated, under guard, and isolated on locked wards". He notes the use of restraints in response to behaviour that is the result of "under-stimulation." 30 Such routine forms of neglect and violence carry profound effects that defy commonly-accepted standards of decency – a discrepancy that exposes a disturbing level of tolerance for disability violence on the part of officials.

In an interview, Michael Neve expressed the wish to have, "my own apartment… downtown, close to shopping malls". 31 His experience suggests that while efforts might have been made to direct existing resources his way, the nature of these resources – according to those who control their distribution – may not have matched his support needs. In cases such as these, confinement in the back wards of the system can result from being deemed ineligible for services run by private agencies. Equally troubling is the fact that the failure to provide support to individuals who have experienced violence through custodialism and the willingness to allow instead for their continual confinement and marginalization from the community, is often represented as a failure on the part of the individuals themselves to meet the criteria of TPAs. These individuals can experience confinement as a form of punishment, as when Michael Neve explained how he disliked "not being able to go home". 32

Assessment Regimes: Discrimination and Impairment Hierarchies

Disability activists have long criticized inflexible service systems that penalize individuals who do not meet the normative expectations of service providers. Indeed, some of the well-known dangers and shortcomings of Ontario's group homes stem from the failure to provide person-centred support. Yet the waiting lists continue to grow (in 2014, reported at 22 years!), 33 because there are no alternative forms of residential support. In this context, it is important to look more closely at gate-keeping practices within government-funded and privately-managed TPAs and ask who really controls entry into these places. The troubling answer is that assessment processes, overseen by individual TPAs, allow group home agencies to deny services to individuals based on subjective understandings of their needs. The Ombudsman explains that when a service opening becomes available, "the agency with the vacancy must first interview the individual before deciding whether the placement was suitable". 34 While other eligibility assessments certainly precede the TPA-client encounter, it is this encounter that can pose the final barrier for many disabled people. There is reason to believe that the structure of this assessment process has resulted in the denial of services to individuals whose needs, for whatever reason, are interpreted as being outside of the service provider's capacity. According to the Auditor General, TPA assessment processes adversely affect individuals labelled/with intellectual disabilities who have the highest level of need. 35 Ombudsman reports shed light on the grim details documenting, for example, how a man named Peter resided in a psychiatric ward for nearly 12 years despite the absence of a relevant diagnosis and despite being, at one point in time, considered a top priority for a residential placement. The report explains that Peter simply "had never been selected for any of the residential vacancies arising in the community". 36 Such practices must be approached as an issue of discrimination in service provision, and not simply as an issue of system capacity, though the two are closely related. By framing these decision-making processes – known by industry and government stakeholders as the 'matching' process – as discrimination as well as a capacity issue, we can focus on how conceptions of intellectual disability and broader social devaluations of disability inform redistribution. Such a view focuses on the structure of private agencies and the nature of the supports they provide, rather than allowing them to dismiss these service issues as a consequence of government underfunding.

The legacy of institutionalization and congregate care has shaped current residential services, meaning that "services today have become standardized, inflexible and unaccountable to those they serve." 37 According to Power, Lord, and deFranco, lump sum grants are commonly given to independent agencies, who then create rigid and unresponsive supports, and "provide loosely defined services to a group of people, without close inspection of state involvement"; 38 disability researchers and advocates have linked these approaches to harmful and exploitative forms of care. 39 Not only are these systems, due to their failure to be truly person-centred and capable of providing dignified support, dangerously out of step with broader, and in Canada, officially recognized rights-based views of people labelled/with intellectual disabilities, but they fail even according to older Poor Law standards of granting access based on needs-based assessments. In a perverse irony, individuals who are labelled as profoundly disabled and assumed to be completely 'dependent' and incapable of contributing to society in any meaningful way, retain the stigma associated with the category of 'worthy poor' while the benefits of this dehumanizing and ableist view are denied to them – it is truly the worst of both worlds. These injustices are perhaps most visible in relation to the discriminatory treatment that underlies the experiences of people who are considered to be 'profoundly' disabled, and along with this, 'unruly' and 'disruptive'. Descriptions of back ward occupants reveal that 'behaviour issues' are often associated with adults who are reported as having the 'mental age' of very young children. These value judgments will be the subject of the next section.

Manageability: Medicalizing Unruly Minds

Medicalized and IQ-based views of intellectual disability explicitly inform the logic that underpins eligibility and assessment methods in Ontario, leading to the creation of impairment hierarchies based on the perceived needs and abilities of applicants. Chen Yang articulates the insight of many disability activists by linking medicalized views of disability to the hierarchical ordering of individuals. As he explains, the elimination of a medical perspective will mean that services "are not decided according to the severity of the type of disability". 40 Yang observes that rights-based views which align with the UN CRPD present services as entitlements, though he notes that these ideas have been difficult to implement in light of economic constraints. 41 In Ontario, many barriers to implementation exist within the governing legislation, the Social Inclusion Act (2008). The Act allows for differential treatment of people considered to be 'profoundly' intellectually disabled by allowing eligibility to be defined by "the person who administers the wait list." 42 The assessment policy mandates TPAs to complete self-assessments and "[o]versee the prioritization of those on the waiting lists based on level of need and balanced against available resources." 43 In practice, this means that independent TPAs are assigned an important and unmonitored gatekeeping role. The process of matching clients to TPAs looks like a free-for-all, where agencies can legally deny available services to applicants. In official parlance, the needs of those denied service simply do not match the available services. This discourse suggests that services are so highly specialized that they cannot accommodate variation in needs. Such an explanation may be hard to buy, given that the services in question are non-medical in nature. In addition to this, many skills can be acquired on the job or through internal training, as certification for support work is not a provincial requirement. These realities suggest that a greater degree of flexibility in service provision is indeed possible.

The Ministry also has a role to play in informing the culture that shapes TPA assessment practices and service delivery. Criticism has been levelled at assessment methods that rely on IQ testing and cognitive functioning, which the Ministry supports. 44 This form of testing reflects the logic of the continuum, an interpretative framework that shifts the focus of service provision to ranking and controlling individual pathology. Ferguson elaborates on this ranking tool while noting its role in shaping educational and housing supports. He argues that the continuum allows for services to range from the most segregated to the least segregated. Under this model, placements are assigned based on the perceived severity of intellectual disability. 45 The model is so embedded in service provision for people labelled/with intellectual disabilities that current arguments are often "over where on the continuum the child should be placed, not whether the continuum itself should exist" [emphasis added]. 46 The persistence of this model through devices that rank the 'ability' for independence and denigrate dependency suggests that residential placements are being viewed through a medical and rehabilitative lens, rather than as an entitlement. Ferguson argues that there is strong incentive to retain a rehab approach: when an individual moves upwards on the continuum, demonstrating 'improvement', the service providers and related bureaucracy gain credibility through the illusion of progress, 47 all the while serving to "reinforce the use of a physical location and conceptual justification for those whom professionals seem unable to help." 48

The tendency to place organizational and professional interests ahead of recipients' needs for government-funded supports has been resisted by disability activists in other areas and most notably in Ontario through the establishment of Direct Funding through the Independent Living movement. Disability activist Sandra Carpenter's study shows that a key problem outside of the Independent Living movement was that "the end users of the service were secondary". 49 Gary Albrecht's research on the disability industry further reveals the practical consequences of these misplaced priorities. Albrecht systematically shows how a lack of regulation fosters the practice of "channelling the benefits to preferred groups of the disabled often is a reflection of the personal experiences and values of those in power." 50 TPAs, like many organizations – regardless of whether or not they are for-profit or hold charitable status – must ensure organizational survival and economic 'efficiency'. As Albrecht reminds us, "industry has used resources to maximize profits." 51 While a lack of publically available information makes it difficult to estimate how much money is generated through this system, the mere sustainment of careers, and especially managerial positions, is enough indication that this industry and its current assessment processes are of great benefit to some service providers.

Amidst trends towards viewing individuals and their needs through a relational lens and de-medicalizing services, IQ-testing seems out of step. When supports for people labelled/with intellectual disabilities became part of MCSS's mandate in 1974, having been transferred from the Ministry of Health, this was in response to mainstream acceptance of a de-medicalized view of supports. 52 In contrast, MCSS is presently focused on individuals' limitations, a practice which, as Barnes and Mercer recall, "effectively legitimated the wide-ranging inequalities and exclusion from mainstream society".53 These negative effects are well known to disability activists, as: "services which were set up to assist them became in themselves barriers to participation". The result is "further dislocation" resulting from deinstitutionalization. 54 The underlying reason for this dislocation is the absence of entitlements for disability supports for people labelled/with intellectual disabilities. 55 Instead, the province is funding the subjective allocation of resources based on a medicalized view of intellectual disability and the unchecked prejudices and financial needs of TPAs.

Behavioural Regimes: Deciding Who Belongs

The relationship between hospital confinement and group home placements, read in the context of assessment processes, must be politicized beyond the issue of housing shortages or system capacity. While the 22-year wait list for residential supports is a disturbing indication of the social devaluation of people labelled/with intellectual disabilities more generally, there is also a double form of discrimination at play in shaping how existing resources are allocated within these communities. As previously suggested, the issue relates directly to the selection criteria developed by the group home industry to determine who will be granted support. These assessments are likely informed by the individual observations of TPA management and staff, and reflect internal guidelines. Of course, efforts to predict support needs do not result in objective determinations. Observations are influenced by gendered, racialized, class-based, and other perspectives and prejudices that have historically shaped perceptions of 'dependency'. As historians of intellectual disability have shown, individuals who appear unmanageable or noncompliant are often assessed unfavourably by professionals and their intellectual abilities are underestimated, leading to assumptions that they are dependent, high cost, or risky clients. 56 Similarly, if they seem too critical of service providers, or if their relatives or allies appear to be too critical, individuals may be avoided by TPAs. In an industry that lacks transparency and derives power through secrecy, TPAs might naturally fear scrutiny and potential challenges related to quality of supports. Malacrida's study of Alberta's Michener Centre demonstrates that the back wards have historically addressed perceptions of non-compliance and served a punitive function. Non-compliance or the perception of unruliness leads to the removal of care and support, and placement in an isolated area of the institution. At Michener, one these spaces was the side rooms. These were essentially solitary confinement cells where some inmates – thought to be furthest from the 'norm' and treated as subhuman – were permanently confined. 57 Building upon Malacrida's finding, we can connect such cruel efforts to isolate and punish perceived unruliness to the logic of the continuum, which has become ingrained in service provision structures for people labelled/with intellectual disabilities.

The profiles of back ward occupants recorded by media and the Ombudsman's office suggest that in Ontario, when an individual is thought to require a higher level of support and exhibits a 'lower level' of intelligence in addition to behavioural issues, they are at risk for a deeper form of segregation. The Auditor General found that very often, community housing placements go to people who are considered to be in less need and less of a priority for these services. 58 This practice reinforces Ferguson's claim that back wards are untouched by reform efforts and progress, where those considered 'most disabled' or less independent, are forced to reside. In his words, "intensity of support is fused with separateness of setting: the more intense the support needs, the more segregated the placement required to provide that level of support." 59 TPA assessment processes can easily discriminate against individuals based on perceived degree of impairment, justifying this practice through the continuum model and the goal of matching people to supports. More insidiously, these decisions reflect exclusions that amount to a form of social regulation flowing from older models of welfare provision that position people with disabilities as clients rather than entitled citizens. Further contributing to back ward placements are service providers concerns around cost-effectiveness. Perceptions that people with 'severe' impairments are unmanageable and lack productive value make them seem less desirable as clients. The result is that these individuals are subjected to the punitive, regulatory function of institutional confinement – all because of their failure to approximate the norms that are reflected in the services shaped by TPAs.

Further consideration must be given to the problematic interpretive context that characterizes prospective service users' behaviour as aggressive, dangerous, or outside the scope of a TPA's service capacity. Potential communication barriers, activity deprivation, disempowerment, and other factors related to systemic inequities can account for perceived behavioural issues as well as perceptions of 'low' functionality. Assessments geared towards the needs of the TPA and their version of "efficiency" can unfairly penalize individuals for responding with expressions of frustration and anger to the systemic deprivation of supports and accommodations. The onus is placed on applicants to overcome these adverse effects and to conform to the expectations of the agency – a problematic goal in itself, but even more so considering that applicants are not provided with any supports to meet these standards. It is likely then that most placements are accorded to individuals who already enjoy relative advantages. Reports are replete with evidence of behaviour problems serving as the justification for support denial. In the case of one young man, the Ombudsman's office reports that a "group home agency declined to accept him due to his behaviour". 60 Similarly, a 33-year-old man lived in hospital for seven years and a 40-year-old man for five years due to aggressive behaviour. 61 In another case, a "person was rejected by agencies nine times since 2012 because of behavioural issues, and is currently in hospital because no housing with appropriate behavioural supports can be found." 62 These examples of rejected applicants not only demonstrate how the needs of TPAs are privileged above the basic needs of individuals; they also further reveal a vicious circle in which applicants are setup for rejection through a deprivation of supports that makes them less likely to be able to conform to the expectations of TPAs.

The Ombudsman's report emphasizes that hospital environments are detrimental to the well-being of those who are considered to be healthy people labelled/with intellectual disabilities who are forced to reside there. 63 A related report by the Centre for Addiction and Mental Health (CAMH) on people labelled/with intellectual disabilities who are also considered to have mental health issues argues that long-term stays in hospitals are not only detrimental to people who exhibit "challenging behaviours" but that the lack of appropriate supports in the community is what caused their hospitalization in the first place. They consider the situation a vicious circle, leading to "increasing difficulty in finding them suitable places to live." The report further states: "This scenario is happening on a repeated basis across the province." 64 The Ombudsman describes how Peter, the man referenced earlier who endured 12 years in the back wards, would become "progressively aggressive" as a result of being deprived of activity. According to the report, Peter would "often hit other patients, and was normally placed in physical restraints a couple of times a week". Disturbingly, the response to this situation was further punishment for Peter in the form of physical restraints. No matter how often it is acknowledged that individuals like Peter are not to blame for aggressive or violent behaviour , the reality is that people like Peter, who are labelled with intellectual disabilities, are often forced to endure the punitive consequences.

Some of the barriers that provoke individuals and give rise to frustration relate to communication, degrading interactions with front-line staff, sensory deprivation, and the use of restraints and over-medication. A UK-based study found that negative hospital experiences take place "arguably as a result of neglect, discrimination, and mismanagement," noting that similar experiences were recorded in Canada where "the situation does not appear to be much better". 65 An equally telling report sponsored by the Improving Health and Lives: Learning Disabilities Observatory reveals that hospitalized individuals in the UK labelled/with intellectual disabilities are much more likely to be over-medicated than those residing in group homes or family homes, due to 'challenging behaviours.' These individuals are often administered anti-psychotic medication despite the lack of any evidence that this has enhanced efforts to 'manage' challenging behaviours. A Canadian study supports the finding that "antipsychotic medications are often inappropriately prescribed for adults with behaviour problems and DD [intellectual disability]", 66 echoing the Ombudsman's observations. 67 In addition to suggesting that hospital settings generate what is often viewed as difficult or aggressive behaviour, these findings also support the claim that custodial systems tend to emphasize control over care and justify acts which can be interpreted as violent – such as over-medication – towards this end. 68 There is no doubt that confinement in a hospital is a punitive practice and it is very likely that residential support assessments conducted within this context and which reject individuals for placement risk reflecting a reified and limited understanding of an individual's support needs.

These examples of 'unmanageable' individuals who appear to fall within a 'service gap' speak to the ideology of the back ward and the ways in which confinement poses a further barrier to access. Just as admission to an asylum was regulated based on an individual's 'curative potential', Albrecht argues that one's rehab potential is used to gauge who will receive the scarce supports that the system has created. He explains that agencies shape their clientele to create "a steady flow of malleable clients likely to success." 69 It seems clear then that this rehab approach follows a hierarchical view of disability, rather than a more empowering concept of inclusion and entitlement to supports.

Limited Approaches to Inclusion: The Absence of Entitlements

Continuities between asylum practices and the present residential support system, when taken within the current climate of 'rights rhetoric' which government has adopted, reflect what David Mitchell and Sharon Snyder term inclusionism. Inclusionism speaks to the hollow nature of the promise of inclusion and related accommodations that fail to critically challenge the ideologies that pathologize and degrade those with disabilities. 70 Such approaches to inclusion tend to benefit only certain people with disabilities, leaving the ableist culture and discriminatory views that marginalize others unchanged. 'Inclusionist' assessment are bound to reflect the age-old views of individuals with disabilities as 'burdens' and 'drains' on social and economic systems. Under an inclusionist rubric, it is likely that only certain people with disabilities will be accepted for residential placements. The flipside of punishing non-conformity is the practice of rewarding an individual's ability to approximate a norm. Individuals who meet the standards of TPAs are rewarded with a limited version of inclusion that comes at great cost to both themselves and to those who remain excluded, because prejudicial norms remain unchallenged. In Mitchell and Snyder's words: "Inclusionism requires that disability be tolerated as long as it does not demand an excessive degree of change from relatively inflexible institutions, environments, and norms of belonging." 71

It is little wonder that such a limited version of inclusion has had such limited positive effects on the lives of people labelled/with intellectual disabilities in Ontario. The subjective nature of housing assessments, which are concerned with the ability to meet pre-established standards rather than person-centred ones, can leave individuals and their families feeling disempowered. News that they have been rejected for placement risks further stigmatizing them by echoing the message that they do not belong in the community. Part of the problem is related to the Inclusion Act, which noticeably overlooks any rights or accountability mechanisms for disabled people. 72 As the Law Commission of Ontario has argued, the most troubling aspect of the Act is its lack of any rights for persons with disabilities, which generates "a culture of impunity" within many TPAs. 73 Another facet of this problem relates to TPAs being uninformed about the existing rights and entitlements of people labelled/with intellectual disabilities. 74 A lack of awareness of an individual's basic decision-making rights can negatively impact assessments by reinforcing the tendency of providers to underestimate the abilities of people labelled/with intellectual disabilities. These findings are supported by another area of disability discrimination related to the exercise of legal rights. A recent report by the Law Commission on legal capacity found that procedures for assessing and denying decision-making power are often not respected in practice. 75 In a climate where supported decision-making models (rather than substitute decision-making) are being promoted by many disability rights advocates, the lack of adherence to basic processes that remove legal capacity is important to consider. The illegal removal of capacity is evidence that individuals' abilities are being underestimated and undermined due to the negative preconceptions of assessors who have little knowledge of the rights of individuals labelled/with intellectual disabilities in the first place. These trends participate in the broader devaluation of intellectual disability, which in turn strengthens impairment hierarchies, to the exclusion of many disabled people.

Deepening the sense of powerlessness that can result from these assessment practices is the lack of any recourse to appeal a TPA's decision. In their report, the Law Commission of Ontario (LCO) highlights the fact that assessment processes contain no complaint mechanisms. The LCO points out that while the Social Inclusion Act mandates the creation of these mechanisms by service providers, the language is vague and does not require that an impartial, independent body oversee this process, or that the process be accessible to people labelled/with intellectual disabilities. 76 The majority of critics cited in this paper seem to agree that assessment processes remains one-sided, shifting all power and authority to service providers. Within this context, there is little room for mutual respect between TPAs and clients, and individuals risk being coerced, threatened, or pressured into making important life decisions. Once a 'bed' becomes available, families and individuals are not given any real choice to decline due to the limited options available and the lack of centralized information about any existing or potential alternative placements. The decision to decline a placement can be profound, as it can result in (re)hospitalization, placement in a nursing home, unstable or 'respite' housing, among other undesirable possibilities.

Under Watch and Keep: Group Home 'Dumpings'

TPAs are empowered to conduct assessments beyond the initial matching stage, and they hold the ability to continually assess the suitability of a service recipient's residential placement. In practice, the assessment process is continuous and case studies reveal that a resident can be 'relocated' – a term which, in this context, serves as a euphemism for eviction – from their home, following the TPA's declaration that they do not have the capacity to provide support. This is all in keeping with existing legislated requirements for service provision. ARCH Law explains that group homes can transfer residents without their consent due to lack of rights accorded to residents in the governing legislation. 77 ARCH's report describes the situation in more detail for people with physical disabilities living in "care homes", a situation which bares strong similarities to practices affecting residents labelled/with intellectual disabilities: A "care home" can transfer a resident for two reasons:

  • (a) the tenant no longer requires the level of care provided by the landlord; or
  • (b) the tenant requires a level of care that the landlord is not able to provide. 78

Both forms of justification require that an assessment of need take place, and both rely on subjective determinations. The immense discretionary power accorded to residential service agencies through the assessment process presents the possibility that these TPAs can 'evict' residents at any time. The possibility of terminating a service agreement provides broad scope for acts of coercion and reprisal against residents. Addressing these uncomfortable dynamics, one LCO study found that "many people with disabilities fear being abused, threatened or retaliated against if they raise concerns or make complaints about services." 79 It is quite natural that this fear would include the threat of eviction.

Among current and former group home residents and their families, the possibility of 'dumping' – a term sometimes used for group home eviction – can sustain coercive power relations between providers and residents, especially when back ward placements are the only alternative available. While efforts may be made to provide new housing options, in practice, appropriate housing options and willing TPAs may not be available. This can create the threat of (re)confinement in hospitals, nursing homes, unstable residency in various 'respite' homes, and other inappropriate back ward settings. Peter's story once again serves as a case in point. It was only after his group home "found him too aggressive to handle" that Peter ended up living in an "institutional purgatory" for nearly 12 years. 80 Essentially, he was rendered ineligible to continue receiving supports by the TPA that initially agreed to this role. A news story reports a similar form of disqualification involving a man who was informed while he was at the hospital receiving treatment that he could not return to the MCSS-funded home where he had resided for 26 years. 81

It is possible that in some contexts, dumping can be motivated by conflicts between the service recipient and TPA staff, or other interpersonal conflicts between residents, their families, friends, and TPA personnel. There is also a fear that criticism by service users can result in a form of expulsion or eviction, wherein a resident is transferred without their consent. 82 While the effects of coercive residential support structures have not been explored in Ontario, studies conducted elsewhere provide a foundation for this work. Group home residents interviewed in Australia expressed living with the threat of eviction. In England, one woman feared being sent back to the home of her abusive parents, while another woman described the pressure to be compliant towards support staff. She expressed that the agency managing her housing accommodation would "let me go" if she became angry or upset: "I know I have rights but I have nowhere to go but home… I have to be careful and do what I'm told whether I like it or not. I have no choice." 83

In contrast to these negative experiences, individuals who do not live in group home settings in Ontario have emphasized how much they value and enjoy a greater sense of empowerment: "If I want to get up and eat that's my decision and my choice, and not theirs to make for me". 84 Conversely, the ability to 'dump' a resident accords coercive power to the TPAs, and can leave residents, families and allies feeling discouraged from taking an advocacy role and criticizing service provision. ARCH's summary of the problems that structure this situation reinforce many of the themes addressed throughout this paper: "There is also a fear of reprisal which is heightened due to the vulnerability of the resident and the nature of the power relationship with staff, inaction of the employer, (actual or perceived). Regarding abusive staff members, little or no knowledge of their rights, and the lack of other options for supported housing." 85 Advocacy coalitions such as People First fill a crucial role in this respect, and "People First has been the place where we feel safe enough to speak about what is really happening in our lives". 86 Nevertheless, many individuals, especially those who are denied legal capacity and face communication barriers, may not have a safe place or the right supports through which to express their critique.

Conclusion: Strengthening Calls for Change

Critics of the current system have articulated the mistakes and missed opportunities that occurred, and indeed are still occurring, during deinstitutionalization. It is often pointed out that residential supports for people labelled/with intellectual disabilities reflect many of the ideologies that structure congregate care in that they are neither flexible nor individualized. This article has echoed these critiques by demonstrating that group homes in Ontario that are managed by charitable organizations and funded by MCSS operate with little oversight or accountability. The discussion has focused on admission criteria and assessment processes and sought to better understand how TPAs determine service eligibility and distribute these important and exceedingly scarce resources. The broader point of the article builds upon the well-known criticism that current systems are geared towards the needs of TPAs and not the needs of the individuals who use these services and who, quite importantly, justify the very existence of these group home agencies.

More fundamentally, existing inequities and continuities between asylum and neo-asylum era practices suggest that social service provision clashes with business interests, making the two irreconcilable. The marriage between private sector and government has undermined the goals of service provision, and has instead advanced a form of inclusionism that has re-medicalized disability and subjected support-users to degrading and disempowering assessment methods that do not end at the front doors of their group homes. Within such oppressive contexts, Albrecht encourages us to ask: "Do humanitarian or market place values drive the system?" and "To Whose Benefit?" 87 It is clear that needs-based assessments are not resulting in needs being met, and those who are most in need by virtue of crises face confinement in hospital and the threat of homelessness. These individuals are doubly penalized and doubly stigmatized, first in having their disability medicalized through placement in a medical institution, and second, by being rejected as unfit for entry into the community and ineligible for existing services. One of the broader consequences, which affect all people with disabilities, is that the 'norms of belonging', to borrow Mitchell and Snyder's term, remain unchallenged and support systems are allowed to remain inflexible.

The absence of recognized entitlements to services for people labelled/with intellectual disabilities compounds the fact that important housing decisions are not based on an individual's needs or even on their priority on a waitlist. Instead, a seemingly secretive, subjective evaluation conducted by group home managers or other personnel determines access to fundamental supports. As previously suggested, this presents a potential conflict of interest: resources are shaped according to the needs of the TPA and not the needs of the individual. The Auditor General, Ombudsman, and community research and advocacy groups, have highlighted the inequitable nature of this situation, noting, for example, that "placements go to people who are the best fit for the spaces that become available, instead of those assessed as having the highest priority needs." 88

At the time of writing, the provincial Housing Task Force has yet to release its recommendations, but it is anticipated that there will be a greater focus on user control. This paper seeks to contribute to community and advocacy efforts that call for such a shift in focus in addition to funding increases for new housing models that grant more power, autonomy, and dignity to residents labelled/with intellectual disabilities. The current system presents the threat of reprisal and restricts even the potential for criticism among service-users, but the challenges of studying and exposing these systemic issues are complicated by several factors, including privacy laws, government secrecy, and a lack of transparency on the part of registered charities. To give voice to more individuals and/or their families and allies, the Social Inclusion Act needs to be revised to empower people labelled/with intellectual disabilities to confront the service issues they face as these issues arise. As it is, the Act not only hinders advocacy, it also extends earlier forms of institutionalization. It throws us back to the medical model and, in many cases, quite literally back into hospital.

Endnotes

  1. Sandra Carpenter, 2007, "Neo-Asylum Era: Institutions Without Walls" [capitalization is Carpenter's], 5
    Return to Text
  2. Throughout this paper, I refer to people as being labelled/with intellectual disabilities. The decision to use this terminology reflects an attempt to capture two realities: that of having a diagnostic label imposed on oneself and disagreeing with that label, and situations where one accepts the diagnostic label.
    Return to Text
  3. Borrowing terminology used by Carpenter and other disability activists.
    Return to Text
  4. Here I have in mind international treaties to which Canada is a signatory, such as the UN Convention on the Rights of Persons with Disabilities; while the principles of international law are key to this conversation, one could also argue that the situation violates some points in the Canadian Charter of Rights and Freedoms.
    Return to Text
  5. Licia Carlson, The Faces of Intellectual Disability, (Bloomington, IN: Indiana University Press, 2010), 128.
    Return to Text
  6. Select Committee on Developmental Services, Interim Report, March 2014, p. 7, accessed at: http://www.ontla.on.ca/committee-proceedings/committee-reports/files_html/INTERIMREPORTENG-Final.htm#_Toc381195211; Ontario Ombudsman, "Nowhere to Turn: Investigation into the Ministry of Community and Social Services' response to situations of crisis involving adults with developmental disabilities," August 2016.
    Return to Text
  7. Annual Report, 344.
    Return to Text
  8. Select Committee on Developmental Services.
    Return to Text
  9. Ombudsman, "Nowhere to Turn," 2016, 50.
    Return to Text
  10. Philip M. Ferguson, "Creating the Back Ward", in Disability Incarcerated: Imprisonment and Disability in the United States and Canada, eds. Liat Ben Moshe, Chris Chapman, and Allison C Carey (New York: Palgrave MacMillan, 2014), 46. https://doi.org/10.1057/9781137388476.0008
    Return to Text
  11. Ferguson, "The Present King of France is Feeble-Minded: The Logic and History of the Continuum of Placements for People with Intellectual Disabilities," in Righting Educational Wrongs: Disability Studies in Law and Education, eds. Arien Kanter and Beth Ferri(Syracuse: Syracuse University Press, 2013), 166.
    Return to Text
  12. See for example, "Living a Good Life: Quality of Life and Home Share," Prepared by Rachelle Hole, Tim Stainton and Assunta Rosal for Community Living British Columbia (Centre for Inclusion and Citizenship, School of Social Work, University of British Columbia: August 2015).
    Return to Text
  13. "Richard Ruston on Home," This is My Life video series, People First of Ontario, http://www.peoplefirstontario.com/this-is-my-life/
    Return to Text
  14. Andrew Power, Janet Lord, and Allison deFranco, Active Citizenship and Disability: Implementing the Personalisation of Support (New York: Cambridge University Press, 2013), 153-154.
    Return to Text
  15. 76% of which is dedicated to home for adults; 2% for group homes for children. Annual Report of the Office of the Auditor General of Ontario: 2014 [hereafter Annual Report], Chapter 3, Section 3.10, "Residential Services for People with Developmental Disabilities."
    Return to Text
  16. Ibid.
    Return to Text
  17. Ontario Ombudsman, "Excerpts from the 2014-2015 Annual Report, Adults with Developmental Disabilities in Crisis, Investigations (launched November 29th, 2011) https://www.ombudsman.on.ca/Investigations/SORT-Investigations/In-Progress/Adults-with-developmental-disabilities-in-crisis.aspxk
    Return to Text
  18. Julie Ireton, "Developmentally Disabled People Shouldn't Be Living in Hospitals, Advocates Say," CBC, May 26th, 2016, http://www.cbc.ca/news/canada/ottawa/developmentally-disabled-people-shouldn-t-be-living-in-hospitals-advocates-say-1.3083920
    Return to Text
  19. Ombudsman, "Nowhere to Turn", 2016, 2.
    Return to Text
  20. Ibid., 50.
    Return to Text
  21. CAMH, Submission to the Select Committee on Developmental Services, December 11 2013, 4 . http://www.camh.ca/en/hospital/about_camh/influencing_public_policy/Documents/CAMH_DD_SelectCommittee_Submission.pdf
    Return to Text
  22. Julie Ireton, "Ottawa Hospital Spends Millions to House People with Autism," CBC, May 19th, 2016, http://www.cbc.ca/news/canada/ottawa/ottawa-hospital-spends-millions-to-house-people-with-autism-1.3076247; Annual Report, 341.
    Return to Text
  23. Globe and Mail, April 10th, 2012, "For Those with Intellectual Disabilities, A Decades Long Wait for a Home and Care," http://www.theglobeandmail.com/news/national/for-those-with-intellectual-disabilities-a-decades-long-wait-for-a-home-and-care/article2397837/?utm_medium=twitter&utm_source=dlvr.it&utm_content=2397837
    Return to Text
  24. Ibid.
    Return to Text
  25. Ombudsman, "Nowhere to Turn", 2016, 27.
    Return to Text
  26. See for example Ombudsman, "Nowhere to Turn" and "Excerpts from the 2013-2014 Annual Report"; Annual Report.
    Return to Text
  27. Ombudsman, "Excerpts from the 2013-2014 Annual Report".
    Return to Text
  28. Julie Ireton, "Man's Teeth Left to Rot While in Hospital's Care," CBC, February 16th, 2016, http://www.cbc.ca/news/canada/ottawa/ottawa-man-with-autism-loses-teeth-after-left-to-rot-1.3442864
    Return to Text
  29. Claudia Malacrida, A Special Hell: Institutional Life in Alberta's Eugenic Years (Toronto: University of Toronto Press, 2015), 88.
    Return to Text
  30. Ombudsman, "Nowhere to Turn", 2016, 2-3.
    Return to Text
  31. See Ireton, "Developmentally Disabled People Shouldn't Be Living in Hospitals, Advocates Say," and Ireton, "Man's Teeth Left to Rot While in Hospital's Care".
    Return to Text
  32. Ireton, "Ottawa Hospital Spends Millions to House People with Autism".
    Return to Text
  33. Annual Report, 337.
    Return to Text
  34. Ombudsman, "Nowhere to Turn", 2016, 61.
    Return to Text
  35. Annual Report, 336: "However, placements go to people who are the best fit for the spaces that become available, instead of those assessed as having the highest priority needs."
    Return to Text
  36. Ombudsman, "Nowhere to Turn, 2016, 51.
    Return to Text
  37. Power, Lord, and deFranco, 6.
    Return to Text
  38. Ibid., 10.
    Return to Text
  39. See for example Kristine Kelly, Disability Politics of Care: The Challenge of Direct Funding (Toronto: UBC Press, 2016), 93.
    Return to Text
  40. Chen Yang, "Being Independent From Whom? Analysing Two Interpretations in the Paradigm of 'Independent Living,' Disability & Society 29.5 (2014), 680.
    Return to Text
  41. Ibid., 682.
    Return to Text
  42. Inclusion Act, Regulations, "Transition: Deemed Eligibility for Adult Developmental Services and Supports Under the Act", S 4.1
    Return to Text
  43. Annual Report, p. 334. DSOs are involved in determining priority and ranking applicants. As the Auditor General points out, the standards which are used to assess priorities vary region by region, 336.
    Return to Text
  44. Select Committee on Developmental services, 9.
    Return to Text
  45. Ferguson, "The King of France," 156.
    Return to Text
  46. Ibid., 166.
    Return to Text
  47. Ferguson, "Creating the Back Ward," 58-59.
    Return to Text
  48. Ferguson, "The King of France," 170.
    Return to Text
  49. Carpenter, 9.
    Return to Text
  50. Albrecht, 128.
    Return to Text
  51. Ibid.
    Return to Text
  52. Power, Lord, and deFranco, 162.
    Return to Text
  53. Barnes and Mercer, "Disability, Work, and Welfare," Work, Employment & Society, 2005, 19.3 (2005): 528.
    Return to Text
  54. Power, Lord, and deFranco, 7.
    Return to Text
  55. Ibid., 6.
    Return to Text
  56. See for example, the work of Licia Carlson, John Radford, Deborah Carter Park, Steven Noll, and James Trent.
    Return to Text
  57. See Malacrida, 121, for a discussion of how 'side rooms' – places of extreme isolation and degradation – served a cautionary function for inmates within Alberta's notorious Michener Centre.
    Return to Text
  58. Annual Report, 344: "One would expect that people assigned the highest priority would be offered vacancies first, but agencies often do not have the required services and support in place to meet the most challenging needs. As a result, the current matching process involves selecting the person who best fits the space that has become available. Although this may be practical, it does not serve the highest-priority person first."
    Return to Text
  59. Ferguson, "King of France," 156.
    Return to Text
  60. Ombudsman, "Selections from the 2013-2014 Annual Report".
    Return to Text
  61. Ibid.
    Return to Text
  62. Annual Report, 344.
    Return to Text
  63. Ombudsman, "Nowhere to Turn", 2016.
    Return to Text
  64. CAMH.
    Return to Text
  65. Teresa Iacono, et al., "A Systemic Review of Hospital Experiences of People with Intellectual Disabilities," BMC Health Services Research (October 2014) 14.1. This study argues, "they are at particular safety risk in acute hospital settings and have poor experiences, in some cases pointing to institutional discrimination".
    Return to Text
  66. William Sullivan, et al., "Primary care of adults with developmental disabilities", Canadian Family Physician/ Le Médecin de famille canadien, 57 (2011): 541-53.
    Return to Text
  67. Ombudsman, "Nowhere to Turn", 2016, 2-3.
    Return to Text
  68. Eric Emerson and Susannah Baines, "Health Inequalities and People with Learning Disabilities in the UK 2010," Improving Health and Lives Learning Disabilities Observatory, https://www.improvinghealthandlives.org.uk/uploads/doc/vid_7479_IHaL2010-3HealthInequality2010.pdf
    Return to Text
  69. Gary Albrecht, The Disability Business: Rehabilitation in America (London: Sage Publication, 1992), 125.
    Return to Text
  70. David Mitchell and Sharon Snyder, Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment (University of Michigan Press, 2015), 11.
    Return to Text
  71. Mitchell and Snyder, 14.
    Return to Text
  72. LCO, "Enforcing the Rights of People with Disabilities in Ontario's Developmental Services System," June 30th, 2010, 24
    Return to Text
  73. Ibid., 32.
    Return to Text
  74. Ombudsman.
    Return to Text
  75. LCO, "Legal Capacity, Decision Making and Guardianship, Summary of Issues and Draft Recommendations", October 2015.
    Return to Text
  76. LCO, "Enforcing the Rights," 107-108.
    Return to Text
  77. ARCH Disability Law Centre, ARCH's Submission to the Ontario Human Rights Commission [OHRC] on Human Rights and Rental Housing in Ontario, September 18th, 2007, http://archdisabilitylaw.ca/sites/all/files/Submission%20of%20ARCH%20Disability%20Law%20Centre%20-%20TEXT-19%20September%202007.txt. While the report refers to the Act that preceded the Inclusion Act (2008), the current Act suffers from the same absence of rights and regulations, as observed elsewhere in this paper.
    Return to Text
  78. ARCH, Submission to the OHRC, "the exemption from the RTA [Residential Tenancies Act] means that persons living in a group home cannot have an independent decision maker review a decision equivalent to an eviction".
    Return to Text
  79. LCO, "Enforcing the Rights," 31.
    Return to Text
  80. Ombudsman, "Nowhere to Turn," 2016, 51-51.
    Return to Text
  81. Susan Clairmont, "Disabled Man's Return to Group Home Uncertain," The Hamilton Spectator, October 15 2013, http://m.thespec.com/news-story/4175359-clairmont-disabled-man-s-return-to-group-home-uncertain.
    Return to Text
  82. The Ontario Human Rights Commission, "Housing the Duty to Accommodate," Section 4.3 in "Housing Discrimination and the Individual," in Right at home: Report on the consultation on human rights and rental housing in Ontario The Ontario Human Rights Commission (Approved by the Commission on May 28th, 2008), 37. "The Commission heard that people with intellectual disabilities living in certain group homes may be transferred without their consent, not allowed to make individual choices about what to wear or eat, and denied the right to leave the home, receive calls or attend events."
    Return to Text
  83. Quoted in Janette Welsby and Debbie Horsfall, "Everyday Practices of Exclusion/Inclusion: Women Who Have an Intellectual Disability Speaking for Themselves," Disability and Society 26.7 (2011), 804.
    Return to Text
  84. "John Smith on Home," This is My Life video series, People First of Ontario, http://www.peoplefirstontario.com/this-is-my-life/
    Return to Text
  85. ARCH, Submission to OHRC.
    Return to Text
  86. "About People First of Ontario," People First of Ontario/Personnes D'Abord du Ontario, http://www.peoplefirstontario.com/about/
    Return to Text
  87. Albrecht, 26, 29.
    Return to Text
  88. Annual Report, 336.
    Return to Text
Return to Top of Page


Copyright (c) 2016 Natalie Spagnuolo

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Maureen Walsh. Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

ISSN: 2159-8371