Reviewing the limitations of publicly funded adult developmental services in Ontario: exposing ableist assumptions within the administrative process

Abstract

This paper considers the ways that publicly funded developmental services for adults with developmental disabilities in southern Ontario are limited in how they support clients. This paper is informed by field research conducted in the summer of 2019, which was composed of semi-structured interviews, focus groups, and a policy review. Informed by parent advocates who are the main caregivers of their adult children labelled with intellectual and developmental disabilities, this paper claims that the administrative processes of the Ontario ministry that manages and funds adult disability services relate to broader exclusionary patterns among adults with developmental disabilities. I explore this claim by reviewing how common ableist assumptions of people with developmental disabilities are ingrained in the policies and administrative processes of these services. I contribute to ongoing discussions among Critical Disability Scholars of the ways that disability as a social category can be articulated outside of ableist assumptions.

Points of interest

• Informed by parent caregiver perspectives, this article outlines how the limitations of provincially funded disability services in Ontario, Canada cause significant challenge in the lives of those labelled with intellectual and developmental disabilities.

• One possible explanation for these limitations is that there is a disconnect between how the provincial government classifies who should receive immediate services and how many services, versus the actual need of those labelled with intellectual and developmental disabilities.

• The criteria for high supports, such as monthly funding, placement into a living facility, and the provincial assessment for determining a person’s ‘adaptive functioning’ are rooted in problematic assumptions made of people labelled with intellectual and developmental disabilities.

Keywords:

• Adults labelled with developmental disabilities
• public care services
• assumptions of disability
• administration
• parent advocates
• caregivers

Introduction

In Ontario, Canada, the public disability service sector is a complicated environment for clients to navigate. With a wide range of services, such as, social supports for people with intellectual and developmental disabilities, Respite (which are services aimed to support activities of daily living), monthly financial income allowances, and 24-hour live-in facilities, also called ‘care homes’, as well as multiple governmental offices one must navigate, the system is troublesome and problematic for both prospective and current clients. The system also demands people to be clients of many different programs, which are hosted by different organizations and agencies, if more than one type of service is needed. For example, Community Living, which is a large non-profit organization that has locations across the country, offers various types of services including social support and skill development through their vocational programs, and personal care through their residential locations or individual support programs. However, many smaller agencies may offer only one specific type of service. Additionally, each agency and organization have their own unique eligibility criteria, resources, fees and payment options, and waitlists and availability (Pedlar et al. 2000; Salvatori, Tremblay, and Tryssenaar 2003; Torjman 2015). This atmosphere makes it difficult for people to receive the services they need as well as advocate for themselves. Moreover, due to this complexity, the limitations of these services are heightened for each client which exacerbates existing challenges associated with having a high-needs intellectual and developmental disability in today’s society.

Using an Anthropology of Bureaucracy and Critical Disability Studies theoretical framework, this paper reviews the limitations of publicly funded care programs in southern Ontario for adults labelled with developmental disabilities as told by parent advocates of clients that access these services. I argue that the limitations of Ontario’s provincially funded care programs are caused by its bureaucratic and administrative processes, which produce inequalities among people labelled with developmental and intellectual disabilities who rely on these services. As I will elaborate, the process to access these services and acquire financial support to pay for service fees, places undue stress on caregivers of adults labelled with high-needs developmental disabilities. I make this claim by reviewing the perspectives of disability activists who advocate for adults labelled with high to moderate-needs developmental and intellectual disabilities who access publicly funded disability services, who are also often the parent caregivers of their adult children labelled with developmental and intellectual disabilities. In this case, I will use the term ‘caregiver’ for two reasons. First, caregiver was used most widely by the participants of this study and thus I follow their language choices to describe their relationship with their adult children. Second, even though ‘care-partner’ is growing in popularity due to its recognition of the reciprocal nature of a care relationship among different actors (Womack, Isaksson, and Liija 2016), the activities requiring care that will be focused on in this paper (such as paperwork, managing funding, and political advocacy) are activities performed nearly entirely by the caregivers. Therefore, in these circumstances, caregiver is the more appropriate term.

The participants of the research reflect on the assumptions that are made about their adult children labelled with intellectual and developmental disabilities by the policies of the publicly funded care services they access, and how this affects the accessibility and quality of these services. Thus, my goal in this article is to challenge some of the assumptions of adults labelled with a disability that are made within the administrative processes of the public services and in the ways that public disability services operate and manage their programs. These assumptions have detrimental effects on the lives of the caregivers and the people they support and perpetuate stereotypes of what it means to be disabled in society. Despite the incredible strides that disability self-advocacy and caregiver activism has made to improve social inequality among people labelled with intellectual and developmental disabilities, many of the services in southern Ontario that aim to increase a person’s social engagement through employment, education, recreation, and leisure in order to promote holistic wellbeing (Nind, Coverdale, and Croydon 2021) contain detrimental assumptions.

Critical Disability Studies has a long history of identifying and criticising these assumptions, in hopes to imagine disability ‘not as something to overcome or merely tolerate, but rather as a part of life worth living’ (Fritsch 2015, 45). Moreover, the work I am doing here is not necessarily new, since assumptions made within Canadian disability services have been interrogated to be fill with assumptions of citizenship, autonomy, and wellbeing by other researchers (Krogh and Johnson 2006). However, I continue this dialogue by challenging common assumptions found within the administrative terminology of publicly funded services in southern Ontario such as ‘developmental sector,’ ‘high versus low functioning,’ and ‘care,’ while referring to the activities and services that aim to support a person’s social, physical, and wellness needs. I look at the operations of the Ministry as told by parent caregivers to understand how these assumptions continue to be made within the administrative process and how they create major limitations to the care services people receive.

If we want to re-imagine what it means to be disabled in society without making detrimental assumptions, we must first dismantle the ‘pillars that ableist oppression is built on’ (Fritsch 2015, 45). One way to do so is to critically examine what it means to provide care in context to public disability supports through the perspectives of the clients of these services, to challenge the hidden assumptions of what it means to be disabled in Ontario. Therefore, as long as these assumptions continue within care services meant to support people labelled with intellectual and developmental disabilities, this work is timely, relevant, and necessary.

Ontario’s public developmental services: the ministry of children, community and social services and developmental services Ontario

In this section of the article, I will quickly elaborate on the current situation of public disability services in Ontario. There are three branches of government in Canada, municipal, provincial, and federal. In Canada, community programs for adults labelled with developmental and intellectual disabilities are regulated at the provincial level, which means they vary significantly across the country (Torjman 2015; Kozey and Sigel 2008). Additionally, Ontario is split into nine service regions based on population density, which also creates variation in the services people receive across the province. For example, each service area has its own eligibility criteria, definitions, funding bodies, and administrative procedures which cause regional differences in the type and quality of care services a client receives. This variation not only leads to regional inequalities, but also creates challenges for scholars and policy makers alike to make conclusions of the overall condition of Canadian publicly funded disability services. Due to these inconsistencies, variations, and fluctuations, there can be no generalized claim to the overall functioning and structure of Canadian disability services, or even individual provincial or territorial disability services. Therefore, I chose to focus on the Developmental Service Ontario Central South Region, which encompasses the municipal areas of Durham, Haliburton, Kawartha Lakes, Northumberland, Peterborough, Simcoe, and York.

During fieldwork in the summer of 2019, the current premier of Ontario, Doug Ford, announced the Ontario budget for the next three years, which included an annual billion-dollar CAD funding reduction to the Ministry of Children, Community and Social Services, the Ontario ministry responsible for adult developmental disability services. My fieldwork was conducted several months prior to the global coronavirus pandemic; therefore, this political atmosphere has greatly changed again within the last three years. Although these cuts were ultimately reversed prior to the pandemic, this example shows how service programs are subject to change according to political motivations, and fluctuations in government, policy, and legislation.

The Ministry of Children, Community and Social Services uses a centralized Ontario-wide system called Developmental Service Ontario that acts as administrative offices for publicly funded adult developmental disability services. These offices officially act as an ‘information centre’ for potential clients, however, they are also responsible for many other bureaucratic functions of the Ministry. Some activities of Developmental Service Ontario are to operationalize public care programs by funnelling provincial funding into independent agencies, managing assessment appointments and paperwork, and acting as a point of contact between clients and the ministry. Developmental Service Ontario is also a symbolic structure as it represents a moment of time when the public developmental service sector in Ontario changed radically by one extremely influential act legislated in 2008, The Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act. The establishment of this act coincides with the province-wide closure of remaining institutions for adults labelled with intellectual and developmental disabilities, which included Huronia Regional Centre located in Orillia, and Rideau Regional Centre located in Smith Falls, about 60 kilometers out of Ottawa’s centre, and Southwestern Regional Centre, located in rural southern Ontario called The Chatham-Kent municipality, and was a major legislative action towards de-institutionalization for adults labelled with intellectual and developmental disabilities.

Research process

Field site

For this paper, I chose to focus on services that are offered to those considered and labelled with ‘high needs’ disabilities, which refers to people who often require support twenty-four hours a day for many aspects of their lives (Sladeczek et al. 2017). In accordance with the preferred language of disability activists, I use the labels ‘high’ and ‘low’ needs to reference the range of support an individual may require. This language stands in contrast to the Ministry of Children, Community and Social Services, which uses functioning labels to illustrate the kinds of supports a person may need. Often people with high needs are labelled as ‘low functioning’. Functioning labels are terms that are supposed to indicate a person’s abilities and capacity for handling independent living. Functioning labels judge people’s lives through assumptions of what adult living is supposed to like, rather than refer to how much support a person may need in a certain area of their lives (Mallet and Runswick-Cole 2016). Functioning labels have been widely criticized as being reductionist and value-laden however, they continue to be used by the Ministry of Children, Community and Social Services.

Between July and October of 2019, I conducted a policy review, archival research, and interviews in the municipal regions of Durham, Haliburton, Kawartha Lakes, Northumberland, Peterborough, Simcoe, and York, also known as the Developmental Service Ontario Central East Region. As mentioned in the introduction, services vary considerably between service regions and even more so between provincial and territorial boundaries. The area of the Greater Toronto Area has the highest population density in the province, and it is broken into several service regions including Central-East where I conducted field work; Central-West; and Toronto Region, which contains the city of Toronto. The Greater Toronto Area is a relatively small geographically, with the city of Toronto spanning 630 square kilometers and the greater Toronto region approximately 5,903 square kilometers (dependant on varied geographical boundaries) in contrast to the Central East Region which covers 25, 213.6 square kilometres alone. The benefit of having smaller service regions in a geographical boundary means that there are more services available to people and less distance to travel between services. Thus, the Greater Toronto Area having three service regions suggests there is a high number of services to choose from and less travel between them, creating more options for families. This contrasts with rural areas that have much larger service regions, suggesting fewer services and more travel between them. The difference between urban areas versus rural areas contributes to the inequality that is seen in geographical areas and the privileging of people who live in or close to cities.

I chose to study the Central East Region as there is a gap in scholarship pertaining to this area as studies tends to focus on the Toronto Region, and it contains both urban and rural living areas. The Toronto Region is heavily urbanized, yet, only a few kilometers out of the city’s centre, municipalities are significantly less urban. At the time of my field work, I worked and studied in the city of Toronto, which often meant I gave priority to the urban experience. By studying a service region just outside of the city of Toronto, I found a more diverse set of participant experiences, and the possibility to enrich the conversation further by examining the types of services people have access to according to their location. During my field work, a participant explained to me the challenges of living in a rural location and the lack of options for services. Future research should examine the differences between urban and rural areas to compare the experiences of those accessing public disability services to review if there is a privileging of people who live in or close to city centres in Canada.

Data collection and analysis

Interviews, focus groups, and participants

The participants of this research are involved with disability activism. I worked with advocates for disability justice, many of whom are also the primary caregivers of their adult children labelled with moderate to high-needs developmental disabilities. The narratives I draw on focus on the perspectives of advocates who are also parent caregivers to adult children labelled with intellectual and developmental disabilities, however, in the larger research project I also interviewed those who were managers of public disability services. I connected with participants mainly by finding the names and contact information of people who publicly criticized the Ministry of Children, Community and Social Services’ policies or worked with legislative assemblies in reforming a particular act, service, or policy. Many left their contact information on these public documents or public works. I sent out emails explaining my research intentions including my contact information, my university affiliation, and research ethics protocols, should they wish to participate. Out of the hundreds of emails I sent out, ten people expressed interest in participating in my research.

I conducted a total of four open-ended, semi-structured interviews, and two focus groups, with a total of ten participants. Most of the participants were women (n = 8 women and n = 2 men). The interviews were between forty-five minutes to an hour long, audio recorded, transcribed, and coded. Interviews and focus groups were held in both private and public locations, including the homes of the participants, local coffee shops, and work offices. One of the focus groups was conducted with the founding members of an organization called Casa de Angelae, who called themselves the Founding Families. Casa de Angelae expressed preference to have the name of the organization published. The names of the Founding Families have been anonymized. Casa de Angelae is both an idea and an actual place; it is best described as a ‘model care home’, where the Founding Families devised a new model of supported living compared to the common 24-hour living facilities in Ontario, and they advocate for having their model implemented across Ontario. It is also the name of the home that their five daughters live in that the Founding Families established so their daughters could have a permanent and safe place to live as they aged. All other identifiers have been doubly anonymized including names, workplaces, locations, and details about their person.

This paper comes from a larger research dataset that contains a literature review tracing the history of the developmental sector in Ontario, a policy review, and archival analysis. I coded the interviews from codes developed from the policy and archival analysis as well as a thematic analysis of the interviews themselves. The coded information collected from the interviews and focus groups was then compared across the different data sets to determine common themes. Of these themes, three narratives are included in this paper that highlight the limitations of public disability services and suggest how they are caused by problematic assumptions made of the adults labelled with high needs developmental disabilities who use these services.

Findings

By exploring three emerging themes from the interviews, I argue that the bureaucratic and administrative processes of the Ministry of Children, Community and Social Services and Development Service Ontario, that manage and fund adult disability services, relate to broader exclusionary patterns among adults with developmental disabilities. I discuss three themes through the narratives of the Founding Families, Lethabo and Amahle, and Sherry and Ali.

Sherry and Ali: “SIS-scores”

Sherry is a white elderly woman whose middle-aged daughter, Ali, is labelled with a high-needs developmental disability. Ali lives with her family of four in a small town near the Kawartha Lakes, however, Sherry is Ali’s main caregiver. Sherry is now retired but used to work as an administrative assistant in the Federal Government. Sherry made the decision to quit work and stay at home to become a full-time caregiver of her daughter after she was diagnosed with a high-needs disability when she was a child. Sherry explained to me that the services in her town are limited, and although she has a lot of support from her family and friends in the area, she expresses deep concern for the lack of services in rural areas. Sherry’s story elaborates on the assessment process used by the Ministry of Community, Children, and Social Services to determine a person’s eligibility for services. The Ministry of Community, Children, and Social Services operates on a numerical index system that determines a person’s level of support through a capacity need-based model. The index system is called a SIS-Score or ‘Supports Intensity Scale’-Score. Sherry discusses the failures of the system in context to Ali’s assessment. From this discussion I elaborate on the ableist assumptions found within the assessment system’s policy that create major challenges in clients’ lives. These assessments are based on functioning frameworks that determine a person’s deficits in relation to what the Ministry of Children, Community and Social Service assumes daily independent adult life looks like for people.

Lethabo and Amahle: “a crisis”

Lethabo is a Black woman in Durham Region who is the mother and primary caregiver to Amahle, a 27-year-old woman who has Autism and a mental health disorder. Lethabo is the manager at one of the publicly funded care agencies, and began working in the developmental sector over twenty years ago, prior to having Amahle. This agency is similar to L’Arche and Community Living in that it receives funding from the Ministry of Children, Community, and Social Services for the majority of its operational costs. I connected with Lethabo after reading an opinion piece she wrote for her local newspaper where she argued against the province-wide closure of a vocational program that taught job skills, and about how these programs supported and embraced her daughter’s social needs while teaching vocational skills. The vocational program occupied nearly forty hours of time a week, and since its closure, Amahle is instead spending her time at home while Lethabo is at work and her sister is in high school. Lethabo, like Sherry, discusses the challenges that are caused by mis-determining a person’s needs by the Ministry of Children, Community, and Social Services. Complimentary to Sherry’s discussion, Lethabo discusses how the Ministry’s priority system, which determines people’s placement and eligibility for certain services, is based on their judgement of what makes a situation a ‘crisis’ in contrast to what is deemed a manageable situation. Lethabo explains how this system excludes many people in need of services simply based on arbitrary definitions and creates a system that forces people into desperation before offering them access to these services. As I will discuss, these definitions and discourses often foster the conditions that make people’s situation deeply problematic and vulnerable.

Casa de angelae and the founding families: “nowhere to live”

The Founding Families are a collective of five families who worked together to establish a new model of care homes for people labelled with intellectual and developmental disabilities. The Founding Families live in the Peterborough region. The families met at a recreational program for girls labelled with intellectual and developmental disabilities when their daughters were young, nearly thirty-five years ago. Their daughters, now middle aged, live in a care home that their families established as a safe and supported place for their daughters with high needs disabilities to live comfortably outside of their family home. The Founding Families are highly active in disability activism and work with politicians and policy makers for an increase in government funding allocated to care homes. The Founding Families worked alongside other agencies to establish a care home under Casa de Angelae’s model. One member of the Family Families state that they were successful in implementing a home for four men in the City of Guelph under Casa de Angelae’s model.

Casa de Angelae was established because the Founding Families realized, after several different attempts, that their daughters were not safe living independently in a space outside of their family homes. For example, John, one of the fathers realised his daughter was not safe living without a caregiver after she missed many days of her medication, struggled to make her meals consistently and on time, and became easily overwhelmed. The Founding Families felt that the women were also emotionally vulnerable and at risk of isolating themselves from their friends, family, and peers. However, when the Founding Families looked to supported living centres, they were met with challenges in finding an appropriate place for the women based on their needs and preferences. Moreover, as will be explained, in Ontario placement into a care home is based off of the Ministry’s standards of adaptive functioning, which offers placement to adults labelled with high needs developmental and intellectual disabilities on higher priority. For the daughters of the Founding Families, their support needs vary, and therefore, placement into one of these homes was less likely. Casa de Angelae was established as an alternative model to the public live-in care homes in Ontario and is adaptive to what a specific person wants their support to look like and their needs for each task, e.g. preparing meals and managing medication versus doing laundry, rather than an arbitrary labelling of a person’s adaptive functioning.

Casa de Angelae is a residential building in a quiet neighbourhood where the five daughters of the Founding Families, Kelly, Sarah, Suzanne, Lorraine, and Bri, live with a House Monitor. The House Monitor is a woman of a similar age who is paid as an independent service by the Ontario government as a personal support worker. The House Monitor’s responsibilities include, but are not limited to, facilitating chores, assisting in transportation by driving the women when needed, cooking dinner, monitoring medication and other health needs, and managing the paperwork needed for Casa de Angelae’s legal status as an approved care home under the legal requirements determined by the Ministry of Children, Community and Social Services. Casa de Angelae operates as a facilitated independent living centre made possible by the House Monitor and the Founding Families. In this section I will discuss how the Founding Families’ story represents a common fear among parents of adults labelled with intellectual and developmental disabilities who are concerned about where their children will live when they become too old to support them and how little the state does to support families with aging adult children. I will also connect this narrative to cost-efficiently values and how the Ministry of Children, Community and Social Services’ assumptions of adults labelled with labelled with intellectual and developmental disabilities contributes to systemic housing crisis for those who require supported living.

Discussion

“I’ve faxed it… my friggin’ invoice and uh you don’t get any response saying they’ve received it, there’s nothing. There is no communication. So you’re checking every day, your computer to see if the money has come in, no, no, no, no so then you phone our local place… it goes to voicemail and they say we will get back to you in three days, so you wait three days and you don’t hear anything so you phone again, and you leave a second message, well, finally I got an email address…[from the email] I was told that they got it sorted out now. Meanwhile I didn’t get the money. One month skip…”

I open with this quote because it is a quintessential moment from my research. During this conversation I began to realize the incredible lengths that parents go through to get care services for their adult children labelled with intellectual developmental disabilities, whether these services come in the form of programs or important financial supports. In this case, Bailey who is one of the fathers whose daughter lives in Casa de Angelae, was blamed for not handing in all the proper paperwork, which includes multiple forms, a cover letter, receipts for the services that are paid outright needing compensation (such as the Personal Support Worker’s meal and movie ticket), and his daughter’s client information. The Founding Families manage all their daughters’ paperwork and funding for the home from the Ministry of Community, Children and Social Services, which would otherwise be completed by a paid employee of Developmental Services Ontario. The Founding Families told me that this paperwork can take upwards of twenty hours a week. When paperwork is lost in the mail, or takes significant time to be processes, the client will lose funding for that amount of time. This means that the costly care services must be paid out of pocket for these caregivers, which without back payment from the Ministry, become unaffordable monthly costs. Instead, the blame is placed on the client for the paperwork being processed late, which places caregivers in precarious financial predicaments. Additionally, these processes demand huge amounts of unpaid informal work from caregivers as a condition of accessing these services.

This informal labour is demanding and essential to access the services their daughters require. It is an aspect of caregiving that is often forgotten in discussions of kin care labour but is an important aspect to reflect on the different demands on caregivers. These everyday processes of faxing invoices, writing cover letters, saving receipts, and processing paperwork through the Developmental Service Ontario offices, only to be transported to its final destination at the Ministry of Community, Children, and Social Services, hinder the delivery of care to families. I focus on the boring aspects of the administrative sphere, such as filling out paperwork and forms, and making phone calls. These repetitive and unexciting administrative tasks appear at every step of the bureaucratic process and are the most frequent interactions between clients and low-level bureaucratic employees (Gupta 2012). It is at these moments where the limitations of the disability support services can be at their most detrimental, for example in the financial consequences of losing a receipt, and where the assumptions made about adults labelled with high-needs developmental disabilities within public support services can be seen.

‘A crisis’ and ‘SIS-Scores:’ assumptions within the bureaucratic process

So, they will come to me and say, ‘so when is Amahle,’ my daughter who is twenty-seven, ‘when is she moving into a group home?’ Unless I die?! She’s not. ‘Cause that is the criteria now. It has to be a crisis.

In the above statement, Lethabo is expressing concern for her daughter’s wellbeing as she ages. When Lethabo mentions ‘a crisis,’ she is referring to the Ministry of Community, Children, and Social Services’ policy that gives priority to those who are threatened by houselessness or are living in an abusive environment. A crisis is defined by the immediate and crucial housing needs of people labelled with intellectual and developmental disabilities who are facing extreme social vulnerability and safety issues in their current living situation. However, if there is a kin relation that the Ministry of Community, Children, and Social Services argues can be a suitable caregiver of an adult labelled with intellectual and developmental disability, the person is determined, by definition, to not be in a crisis, despite their personal circumstances. This definition assumes that kin relations are automatically able, and whiling, to assume all caregiving roles if need be.

To elaborate, as the primary caregiver to her daughter Amahle, Lethabo must be totally unable to support Amahle to be considered for priority placement in a care home. This policy makes no exceptions for other heart-breaking situations, such as one parent dying, leaving another parent with all the responsibilities of caregiving while they are grieving and possibly unprepared to become the primary care giver. In these situations, if the individual is facing houselessness or they are living in a severely inadequate housing arrangement where their needs are not being met, they would qualify for priority placement. However, if the family is understood to be supportive and stable, the ministry ignores the needs of aging parents, and places these families at the bottom of the never moving waiting list.

Priority is additionally given to individuals with high-needs or considered ‘low functioning.’ ‘High’ versus ‘low functioning’ is a label that came up regularly during the interviews, as parents and advocates expressed concern for how the Ministry of Children, Community and Social Services classifies the abilities of adults labelled with intellectual and developmental disabilities. The process to become eligible for services offered by the Ministry of Children, Community and Social Services, an individual must go through a lengthy diagnostic process conducted by the Developmental Service Ontario offices to determine their level of needs based on their diagnostic definitions of adaptive functioning. This diagnostic process is a system that identifies a person’s level of adaptive functioning through their definition criteria and categorizes their needs using a numerical index system, which is supposed to determine how much support a person may need during a typical day. This system produces a person’s ‘Supports Intensity Scale’ Score, also known as an SIS-Score, which are determined by an employee of the Developmental Service Ontario using the Prioritization for Developmental Services measurement tool, or otherwise called the ‘risk-based tool,’ which classifies a person’s needs and their supposed capabilities in context of their social situation.

The process for the SIS-Score assessments is simple; the agent interviews the prospective client by asking questions about their daily life. Each question relates to either an adaptive skill or a point of concern, or risk, that are weighed, tallied, and scored to a final index number. This number is then used to quantify how capable a person is at living independently in accordance with the Ministry’s guidelines and definitions, and thus, determines their eligibility for a certain level of financial assistance, service utilization, and priority placement for care homes and other services.

These SIS-scores and the determination of a crisis show two fundamental processes of how the Ministry of Children, Community and Social Services actively shapes the exclusionary patterns against those labelled with intellectual and developmental disabilities and their caregivers. First, the SIS-scores and the determination of a crisis suggests how the Ministry of Children, Community and Social Services classifies people using ableist definitions of what adult life should be. SIS-scores demonstrate how bureaucratic thought-work produces inaccuracies in how the agency defines a situation in contrast to lived reality (Heyman, 1995). These definitions greatly affect the lives of adults labelled with intellectual and developmental disabilities in monumental ways. For example, it can be expected that these SIS-scores are often inaccurate in describing an individual’s actual need for certain services. However, it is the extent of these inaccuracies that cause problems for families, as will be described below with Ali’s experience as described by her mother.

The way that employees interpret definitions of crises, adaptive functioning, and risk in the policies outlined by the Ministry informs and influences how staff conduct the SIS-score assessments. These assessments determine a person’s level of care needs and their access to services, financial support, and priority placement in care homes. Heyman’s (1995) concept of bureaucratic thought-work is useful here. Heyman describes how an institution, in this case the Ministry of Children, Community and Social Services, organizes control through processes, performances and operations of bureaucracies, and are suggestive of the values of the organization. Even if most of the individuals who work as service providers, administrative staff, or managers at the Ministry do not agree with the assumptions made about people labelled with intellectual and developmental disabilities in policy, their actions fit these assumptions due to administrative pressures to act according to Ministry’s expectations (Bowker and Star 1999, 53). Thus, even if these assumptions are entirely based on ableist ideology, the consequences of the collective action of staff create major limitations to the care services people receive (Bowker and Star 1999).

Second, these SIS-scores reduce people’s complex lived realities into a statistic and remove the diversity of experience that adults labelled with intellectual and developmental disabilities have. This flattening of diversity is useful for the ministry for administrative purposes but puts adults labelled with intellectual and developmental disabilities and their caregivers at risk. Gupta’s (2012) use of the concept enumeration, the numbering of experiences, can be applied to how the Ministry reduces complex diversity into statistics used for labelling and classifying people’s needs into ableist definitions.

The questions are devised around the concept of the adult citizen, placing values on certain abilities associated with independence. Instead of reflecting a co-dependence framework, where most adult citizens require support for some aspect of their lives, the Ministry of Children, Community and Social Services assumes that if any of their criteria are met, a person can achieve complete independent living. SIS-Scores are assumptions made by the Ministry of Children, Community and Social Services that are materialized through the performance of the intake assessments. Once this score is attached to the individual, it becomes a determining factor of access to the care programs. By looking at how individuals come to be classified under ableist discourse through institutionalized policies and administrative procedures, we can work to dismantle these oppressive systems to reimagine what disability could be without these assumptions. In the case of the Developmental Service Ontario and the Ministry of Children, Community and Social Services, these values and assumptions of adults labelled with intellectual and developmental disabilities are inherent in the structure of its administrative processes.

In my fieldwork, Ali’s assessment, as described through her mother Sherry’s experience, serves as an example of how these systems affect the lives of adults labelled with intellectual and developmental disabilities. At one point in the assessment, the Developmental Service Ontario agent asked Ali about her abilities to prepare food. The agent asked Ali to describe how she would make herself a meal if her caregiver, Sherry, was not available to do so. Ali described making herself a club sandwich for lunch and added details such as what cheese she wanted, the juice she likes, and how she does not like lettuce on her sandwich. The agent interpreted that Ali had many strengths in the kitchen and could independently prepare food based on her answer.

Ali is skilled in conversation and has a high level of emotional intelligence, which means that Ali was extremely confident when answering the agent’s questions. Despite the details Ali provided to the agent, Sherry elaborated in our interview that Ali had never made herself a club sandwich before, but rather, had seen her mother make them nearly every day for lunch. Sherry said that she had tried to teach Ali to make the sandwiches for herself before but without cues, Ali becomes overwhelmed in the kitchen. Sherry noted that, for Ali, becoming overwhelmed may be due to a lot of different factors, including how she may be feeling that day, if something was stressing her, if she was interested in doing something else, or general apathy.

In context to the kitchen question, the agent was satisfied enough with Ali’s answer to apply this to other domains of cooking proficiency and assumed that Ali regularly cooked for herself. Throughout the assessment, Ali answered all the questions in the way she thought the agent wanted to hear. As a result, Ali scored low on the assessment, suggesting a low need for services, which made her ineligible for many services and programs, priority placement in a care home, and only eligible for the minimum allotment of financial support. As a result of this score, Sherry struggles to support Ali’s in a way that fully meets her needs, is financially insecure, and worries about Ali’s future as she ages. This vulnerability that Ali now faces due to the low score is a result of the assumptions Ministry of Children, Community and Social Services makes about people labelled with intellectual and developmental disabilities, which causes systems of inequality and marginalization. It is through the ‘social attitudes of neglect and stereotypical images about [adult’s labelled with intellectual and developmental disabilities] capabilities and needs’ that people are at heightened vulnerability due to a lack of political action (Bickenback et al., 1999, 1174) and in the case of the Ministry of Children, Community, and Social Services, incorrect action.

Ali’s situation demonstrates the diversity of experiences and skills that adults labelled with intellectual and developmental disabilities have, yet the flattening the Ministry does in favour of being systematic in their administrative processes. The Ministry of Children, Community and Social Services assumes that individuals labelled with intellectual and developmental disabilities do not have the social skills to answer questions based on what they perceive the agents want to hear. Moreover, there is an assumption of ‘innocence’ of people labelled with intellectual and developmental disabilities. It is assumed that people labelled with intellectual and developmental disabilities cannot lie and deceive authority, and thus, everything that Ali said was taken for granted as an ultimate truth and not followed up on. Instead, the agents assume a level of authenticity from the prospective client. This assumption of innocence is highly problematic, but commonly made of people labelled with intellectual and developmental disabilities. It is grounded in values associated with individual’s labelled with disabilities as ‘innocent’ and ‘child-like,’ which are pervasive ableist ideologies (Kafer 2013). It suggests people labelled with intellectual and developmental disabilities are children stuck in adult’s bodies and thus do not mature out of their naive childish mentalities (Kafer 2013). The consequences of these assumptions are profound, such as the lack of sexual education and consent (Ignagni et al. 2016) and the lack of follow up for the SIS-score assessments.

Nowhere to live: the lack of options for adults labelled with intellectual and developmental disabilities and their aging caregivers

Casa de Angelae represents a concern that was present throughout my interviews regarding the living situation for adults labelled with intellectual and developmental disabilities when their primary family caregiver becomes too vulnerable to perform all the caregiving duties required to support their adult children. Casa de Angelae began as a model to promote alternative options for families looking for a safe living space outside of the family home for their adult children labelled with moderate to high-needs developmental disabilities. Casa de Angelae began as a parent led initiative to establish a lifelong home for their daughters that promoted independence in a safe and supported environment. The Founding Families emphasizes that publicly funded care homes have decades long waiting lists, making it an unsuitable option for most families with immediate but not crucial housing needs. This leaves families without support and creates major strain on their home environments (Housing Study Initial Report 2013).

The goal of Casa de Angelae was to establish a model of supported living spaces for adults labelled with intellectual and developmental disabilities that would be possible for the government of Ontario to implement across the province, so that people like Kelly could have a comfortable place to live as they age. In a recent paper, Burns et al. (2021) discuss the challenges that people with disabilities have in creating an accessible living space in the United States, especially facing financial insecurity. These challenges include lack of accessible adaptations due to cost, renting restrictions on modifying spaces, cost-burdening housing arrangements (where housing can cost more than 50% of one’s income), and housing insecurity such as the threat of eviction (Burns et al. 2021). In Canada, there are similar concerns, including unstable living arrangements, inaccessible infrastructure, substandard living conditions such as overcrowding, infestations, and poor water and air quality (Waterson, Grueger, and Samson 2015).

The Founding Families remarked that one of the ways that Casa de Angelae is successful is because it is financially efficient to run in comparison to the standard care home in Ontario. The Founding Families say that it takes about 60,000 CAD for Casa de Angelae to run smoothly for the whole year for all five daughters, including all expenses such as food, utilities, hygiene needs, and additional services such as social programs. In contrast, the Families note, it takes approximately 250,000 CAD a year for one individual to live in the standard care home model for a single year. Although this number was not verified, the Families used this comparison during the focus group to convince me that Casa de Angelae is the better model than the standard provincial care homes because of its cost efficiency. The hope of the Founding Families is that by reducing costs associated with traditional care homes, Casa de Angelae could become an option for people amidst the housing crisis for those labelled with intellectual and developmental disabilities. The Founding Families advocate for the establishment of other care homes by meeting with politicians, making appearances in front of legislative tribunals, participating in research projects, and working with government agents in writing reports about the developmental sector in Ontario. They also hold fundraising events, speak in front of town councils, and routinely ask politicians to visit the home of Casa de Angelae in exchange for their political support.

The Founding Families gathered social resources and capital as citizens to address to the limited access to publicly funded living facilities for their moderate-needs daughters. Throughout the emergence of the developmental sector in Ontario, citizen led initiatives were vital proponents of change, they advocated for their children with intellectual and developmental disabilities to live at home and to have their rights as citizens realized the same as other children (Wehmeyer, Berani, and Gagne 2000). This activism is not uncommon throughout the world, as parent and caregiver advocates are actors of historical change for disability supports in education, workplaces, and health services (Bertilsdotter Rosqvist, Brownlow, and O’Dell 2015). However, parent-led activism often acts on behalf of their children labelled with disabilities, which has caused tension among self-advocates as many of the perspectives of parent caregivers are not aligned with a person with embodied experience of disability (Bertilsdotter Rosqvist, Brownlow, and O’Dell 2015). Thus, although the Founding Families advocate for alternative housing arrangements for adults labelled with intellectual and developmental disabilities, it is unknown how their daughters perceive living in Casa de Angeale.

One tension that parent-advocates have is to ‘reach the wider public with their agenda’, meanwhile self-advocacy groups argue for representation on their terms (Bertilsdotter Rosqvist, Brownlow, and O’Dell 2015, 222). I believe that cost-efficiency is one of Casa de Angelae’s major selling points to politicians since it fits within neoliberal market values which makes the Founding Families appealing to wide political audiences. For Casa de Angelae to invoke interest from politicians as a viable option of care, it must fit (and succeed) neoliberal frameworks of cost-efficiency. Goodley, Lawthom, and Runswick-Cole (2014) argue that neoliberalism fosters ableism as it demands competitiveness and productivity in an increasingly inaccessible labour market. Therefore, the tension exists for Casa de Angelae to fit within this ableist framework to establish more homes for people labelled with intellectual and developmental disabilities based on their values of support, co-dependent decision making, and enhanced social networks, however, they must do so within a disabling system of neoliberalism, capitalism, and competition.

Krogh and Johnson (2006) found similar assumptions within policy of publicly funded care homes in British Columbia that categorize disability care within cost-efficiency and competition frameworks. Goodley, Lawthom, and Runswick-Cole (2014) argued that the project of neoliberalism is that those labelled with disabilities ‘are expected to overcome economic downturn and respond to austerity through adhering to ableism’s ideals, [and] its narrow conceptions of personhood’ by becoming productive and independent (981). Casa de Angelae represents the tension of creating a space outside of the austerity that the Ministry manufactures through its administrative and bureaucratic processes, such as laborious and unpaid paperwork, the SIS-scores, and its definition of a crisis and’ its failure to provide enough suitable housing options for people labelled with intellectual and developmental disabilities. However, the only way that Casa de Angelae can accomplish this is to conform to deeply ableist assumptions in order to appeal to wide political audiences.

Conclusion

This paper reviewed how the limitations of publicly funded developmental services are caused by ableist assumptions within the policy and administrative system of the Ministry of Children, Community and Social Services. I reviewed three narratives to support this claim: 1) how the Ministry of Children, Community, Social Services determines if an individual is in a crisis and its effects through Lethabo’s perspective; 2) the Ministry of Children, Community and Social Services’ use of SIS-scores through Sherry’s perspective of Ali’s assessment to demonstrate how this system enumerates diverse experiences into a statistic that is largely inaccurate of the clients’ needs; and 3) Casa de Angelae as it represents contemporary citizen initiatives to provide safe and secure living environments for adults labelled with intellectual and developmental disabilities as they age. I argued the limitations of Ministry of Children, Community and Social Services’ services causes major challenges in the lives of clients which are produced by ableist assumptions found within their policies and procedures. By conducting this work, Critical Disability Scholars can review how ableist concepts are rooted in daily lives of adults with intellectual and developmental disabilities, even within programs and care services that are meant to address the needs of Ontarian citizens labelled with intellectual and developmental disabilities. The goal of this kind of analysis is to possibly reform what it means to be ‘disabled’ in Ontario outside of debilitating frameworks.

Additional information

Funding

Social Sciences and Humanities Research Council of Canada.