“As we work to create light for others, we naturally light our own way.” Mary Anne Radmacher
In this photo I stand at the edge of Black Lake in Eastern Ontario. I’m waiting for the sun to fully rise & shine its light on me. We all know that feeling of warmth. We turn our faces towards it, enjoying the light the sun sheds not only over us, but over the entire globe.
Where I stand is where I stand. That exact position offers me a particular ‘standpoint’ on this particular lake.
Lately I’ve been contemplating the phrase “to shed light on”. It means several things.
First are the many sun ray metaphors we so routinely use. Which has led to many ‘warm’ expressions. You are my sunshine, my only sunshine, you make me happy, when I am blue…. People may have sunny dispositions. When we get up in the morning we are told to ‘rise and shine’ and so on.
And there is use of the term ‘shedding light on’ as revealing information about something. And clarifying an issue for others.
“Shedding light on” is a turn of phrase that’s frequently seen in scholarly writing. A researcher will state that they seek to “shed light on” a particular point of interest. It may be an area of interest that is little understood. It may be a hidden corner of a particular field of inquiry. Or, it maybe a feature of social injustice that calls out for attention.
Both scholars and advocates in the area of maternally complex care seek to shed light on the manifold circumstances that caregiving per se immerses one in. It may be about, say, asthma or peanut allergy. Or post-surgical recovery in the home. Respite care, or childhood injection regimes for Enbrel or Methotrexate. Or feeding tube problems. Support of oneself financially while providing complex care. And so on.
In this Blog post I’m going to share a growing list PhD dissertations and MA theses undertaken in the area of care, primarily care provided by mothers to complex care children. I compiled these slowly over a period of years.
If you have undertaken one yourself and wish to add it, please do send me the information and I will do that.
Rather than being difficult to understand these research projects are readable. Rather than being distant to us and othering, they are relatable. Oftentimes very much so.
Why do this?
I do this because these projects matter.
Why do this here?
Because these projects often slip between the cracks of scholarly disciplines. As such they may go unnoticed.
A Blog is accessible. Where as for those outside the academe academic journals are not.
I suggest also that each project, in some regard or other, sheds light that is both welcome and unwelcome. The findings are not promoted where they are unwelcome.
There’s actually been an onslaught of funded research over the past 30 years now that has resulted in advice of various kinds to be given to us, as caregiving mothers. The stated aim of this body of research has been to ‘shed light on’ the reasons why life can be bleak, hard or dark for heavy-care performing mothers, women who deeply love and care for children with high and complex care needs.
And they aim to instruct professionals to teach mothers who perform such forms of care to be ‘better prepared’ psychologically and emotionally accomplished, to maximaize parenting capacity and so on. In other words, on how to perform such care. Often alone.
This is not what these other research projects advance as knowledge.
Caregiving mother scholarship itself sheds a light on this problem and related issues in a notably different manner. For one thing, their scholarly light shed is not the same hue as mainstream scholarship which has largely been conducted on and about caregiving mothers.
I share these dissertations and theses in order myself to participate in shedding light on how society and systems within it can better support care burdens that in fact, No One Person should ever be managing and performing primarily on her own.
Research undertaken by caregiving mothers (often undertaken with little institutional or financial support) comes from a fully engaged position, rather than an objective “view from nowhere” (see the exemplary work by feminist research methodologists Sandra Harding and Dorothy Smith for further explanation on this important point).
As well, our health care and other care centererd research sheds light on momentous gaps in mainstream research in the area of complex care children. It is not we mothers who need to be “fixed” in order to resolve that key issue. And this body of work makes that point best. Toni Delaney’s project is a beacon in that area of analysis.
As caregiving mothers we too have a unique identity. Nothing about us without us goes for us too.
Our research shines a light on the dire need of vastly greater levels of supports; state supports; support of others in the community; spousal support; child support; need of law reform, relational disability rights and so on, all in the setting of complex care.
Further, this caregiver scholarship sheds light on the fact that care in this context is not simply a set of tasks: swabbing a child’s arm; giving them a pill at the right time; changing sheets; giving a bath; taking to hospital, and so on. It is oh so much more than that. In our research we shed light on clinical suspicions in the area of diagnostics. We shed light on medical error and medical progress. We shed light on discrepancies, lost records, good practice, ethical dilemmas in care ethics, confusing essential definitions in public policy, injustices, conflicts in approach in care and so much more than that.
As caregiving mothers our hearts are fully engaged when we provide care. Its why our care matters. And its why our care is important. To us and to others.
To that end I share below a list of over 20 scholarly works informed by women who have provided support and care. And if you are yourself considering undertaking a project about care, these are some of the shoulders you can stand on in order to do that.
Research From Our Standpoint
Lee, Deborah Assad. Motherhood as usual: Two Studies of African-American Women with Technology-Dependent Infants. University of North Carolina at Chapel Hill Dissertation 1996
Jennifer Kim Bateman. Living Liminality: Maternal Subjectivity in the Context of Raising Children with Autism (Doctoral Dissertation, University of Pennsylvania, 2011.
Katherine Vatri Boydell. Mothering Adult Children with Schizophrenia: The Hidden Realities of Caring (Doctoral Thesis, York University, Department of Sociology, 1996)
Martha Brown. “I seemed to understand”: Mothers’ Experiences of the Schooling of their Children with Multiple Disabilities. 2011. MA thesis, Faculty of Education and the Department of Women’s Studies, University of Ottawa.
Callison La Shell Shannon The Special Mothers: An Ethnographic Interview Project of Six Mothers of Children with Autistic Spectrum Disorder Doctoral Dissertation. Ann Arbor. 1999.
Loralei Rita Carpenter. A Child’s Attention Deficit Hyperactivity Disorder on the Mother – The Hidden Disability of Motherhood. Dissertation June 1999 Griffith University.
Toni Delany, To Entrap and Empower: Maternal Responsibility in the Age of Neo-Liberal Health (Doctoral Dissertation, University of Adelaide, 2011) [unpublished]
Patricia N. Douglas. Governing Lived Embodiment: Autism, Asperger‟s and Care. MA Sociology and Equity Studies in Education. OISE 2010.
Jones, Elaine A. Social Reality Versus Family Law: The Experience of Mothers of Children with Long Term Disabilities (Master’s Thesis, University of New Brunswick Saint John, 2002).
Kiran Manhas. The Ethics of Transition: Human, Ethical and Legal Perspectives on Responsibility in the Move to Pediatric Home Care (Doctoral Dissertation, Department of Medical Sciences, University of Alberta, 2011)
McKeever, Patricia. Mothering Chronically Ill, Technologically-Dependent Children: An Analysis Using Critical Theory (Doctoral Dissertation, York University, 1991)
Neuss, Joyce. Mothers as Primary Caregivers for their Technology Dependent Children at Home: A Qualitative Study(Doctoral Thesis of Philosophy, New York University School of Social Work, 2004)
Melanie Panitch. Accidental Activists: Mothers, Organization and Disability.(Doctoral Dissertation, City University of New York, 2006)
Suzanne Michelle Neufeld. Primary Caregivers of Children with Chronic Illness and Disabilities: A Descriptive Study of Caregiving and Respite. 1997. University of Alberta MA Degree
Kristen L. Newman. Navigating Motherhood and The State: Mothers of Children with Autistic Spectrum Disorder. Dissertation 2008 University of New Brunswick.
Runswicke-Cole, Katherine. Parents as Advocates: The Experiences of Parents Who Register an Appeal with the Special Educational Needs and Disability Tribunal (Doctoral Dissertation, The University of Sheffield, School of Education, 2007)
Yi-Ting Shih, The Journey of Becoming and Being a Mother Raising a Disabled Child – The Transformations Between and Across Social Positions. (Doctoral Dissertation, Newcastle University, School of Geography, Politics and Sociology, 2012)
Townsend, Alayna E. An Ethnographic Investigation of African American Mothers of Children with Autism Spectrum Disorders Howard University, ProQuest Dissertations Publishing, 2012. 3513524.
West, M.C. Patterns of Health in Mothers of Developmentally Disabled Children. (MA thesis, Pennsylvania State University, 1984)
Ypinazar, Valmae Anne. This Is Our Life. This Is Our Child. Mothers Dancing in the Margins of Disability. (Doctoral dissertation, James Cook University, School of education, 2003).
In the Canadian context the impacts of the relationship between mothers with children with complex care needs, and the state has been described as haunting (Haslam, 1994) and crushing (Rosen Cohen, 2014). Drawing from scant research, we argue that inadequate support of care is emblematic of home care crises involving complex care of children, and that has not benefitted from the attention of policy makers.
The medical definition for children with complex care needs is medico-centric and has framed the care under discussion in a particular way. Cohen et al. (2011) describe children needing complex care as those who need health care and related services of a type or amount that are greater than those required by other children (Cohen, 2011, p.529).Defining these children as ‘severely disabled’ is disability centric, while describing children with severe medical disabilities as comprising a new form of childhood (Peter et al, 2007: Carnavale, 2006) is child centric. A more useful term would honour the maternal complexity such care entail, and the notion of maternalcomplexity centres our discussion.
Leiter et al. (2004) state that mothering a disabled child “may involve a range of unusual or atypical caregiving requirements that are distinguished from normative maternal caregiving by the intensity and complexity of the assistance needed and the amount and duration of time devoted to care” (Leiter et al, 2004, at p.382). They refer to chronically sick and technology dependent children and argue that care has substantial impacts on mothers. Acquired knowledge includes mothers who provide home care, with mothers coordinating medical care and developing “lay caregiving” strategies “to fill gaps in medical advice” (Leiter et al. 2004, p.382). This underscores the fact that such care is maternally as well as medically complex. In the following we distinguish between disabled children and severely disabled children, with the latter requiring care that is complex and difficult, for them and for their mothers. The a-typicality of such care is described by Leiter et al (2004) as care that requires mothers to become members of a reserve army of nurses (p 382 referencing Dalley,1996, p.24).
Similarly, McKeever (1991) described mothers who perform complex care as trapped in an invisible welfare system involving unpaid skilled health care performed by lay mothers. This care is qualitatively and quantitatively differentthan normative mothering (Leiter et al, 2004, p.380). Complexity is increased in the Canadian context, which requires mothers know how to navigate and access the weak system of supports. This system can be seen as the result of state actions that have off-loaded responsibility for caregiving of cherished children, to mothers. Mothers have paid a price.
A few Canadian scholars have examined state childhood disability supports and Prince refers to disability support policy as “a hit and miss affair” (2004). Home (2002) argues that amongst inequities in the performance of disability care “[M]any women respond by making whatever individual adaptations they can while bearing the costs in silence.” (Home, 2002 p. 5). Petrenchik (2008) states that, “demands often result in exhaustion and create undue hardships for caregivers, particularly mothers” (Petrenchik, 2008 p. 8). Further, “Alone and Untrained: A Mother Becomes a Nurse for her Daughter with Disabilities” highlights a situation of the mother inhabiting exhaustion and worry (Russell, 2017) all of which sounds exploitative.
In spite of advocacy, reform has not occurred, though evidence has accrued – including in governments’ own findings. An Ontario Centre for Childhood Disability stated “the time for informed action is upon us” (Petrenchik, 2008, p.18). We provide background to current support policy, then address what has been done vis-à-vis health care under the aegis of privatization. Through an examination of literature, we address concerns in disability support policy and describe studies on the impacts home care has on mothers. Thus, we illustrate the crises under privatized care arrangements. These features illuminate the relationship between caregiving mothers and the state.
Historical Backdrop to Present Arrangements
Prior to 1970 many disabled Canadian children lived in state institutions (Simmons, 1982). Parents and others advocated for deinstitutionalization as a matter of human rights. Mothers with disabled children comprised an important sector of this movement (See Panitch, 2012). They envisioned a form of community living for their children. This did not materialize, and an impoverished version evolved in its place. Haslam described this version as haunting her (Haslam, 1994). Notably, Vanhala states the Canadian Disabled Women’s Network viewed the Council for Canadians with Disabilities (CCD) as being “very patriarchal” in its orientation and as unaware of discrimination against women (Vanhala, 2008, 13) and comments that an early activist complained that mainstream disability organizations were not interested in women’s issues (Vanhala, 2008, p.12).
In any event, deinstitutionalization of disabled children aligned with the state’s aims to privatize care. The shift to privatize care meant that women were assigned the role of unpaid caregivers (Gilmour, 2002, p.271), and as was pointed out by McKeever (1991), mothers became unpaid health care workers. Women it turns out were heavily impacted by deinstitutionalization. Boydell (1996) described deinstitutionalization as a women’s issue. The State believed that it was justified in moving care into homes where unpaid women would assume responsibility. Gilmour (2002) termed this activity as ‘re-drawing’ the role of the state in care provisioning. This translated into the provision of care by mothers confined largely to the mother’s residence, regardless of housing or situation (Yantzi and Rosenberg, 2008). For women impacted, their lives revolve around care provisioning and for many this leads to the exclusion of all else. Indeed, researchers have concluded that daily lives are “extremely constrained by extraordinary physical, psychological, social and financial challenges” (Carnevale et al. 2008, p. 4).
In the early days of deinstitutionalization state policy advisors were made aware of potential ramifications of homecare provision. Williston (1971) produced a report, at the request of the government. His report recommended that supports be instituted. Moreover, he stated that parents with severely disabled children might be unable to provide care (Williston, 1971). His report also pointed out government obligations in comments he made about deinstitutionalizing children. While we certainly do not advocate returning children to institutions, this Report illuminated expected challenges at the outset of deinstitutionalization. Therefore, the ghost of community living described by Haslam, (1994) appeared long ago. It continues to haunt caregiving mothers today. Two examples of this are waitlists for services for those with developmental disabilities, as noted by researchers Lunsky et al. (2007) and lack of accountability when homecare nurses abruptly cancel shifts (Stevens, 2016) and are not replaced.
State Action Concerning Severely Disabled Children
Regarding the shifted responsibility for care to families, under the political aegis of ‘privatization’, Armstrong et al (2001) itemized changes as: moving healthcare to individuals; moving care delivery to for-profit bodies; moving managerial approaches to for-profit approaches; shifting responsibility for care provision to private homes and care work to unpaid caregivers. They state it was difficult to determine the precise nature of reforms, or to learn what they meant for women (Armstrong et al, 2001). Earlier, McKeever (1995) described the arrangement to shift of care as a means to save the state money on hospitals and institutions.
Subsequent to Williston’s early advice, a number of publications called for renewed analysis of policy. For example, in What We Know (and Do Not Know) about Raising Children with Complex Continuing Care Needs, Carnevale et al. (2008) described childhood with severe disabling medical conditions lived at home. They asserted that their research corroborated that of others that a “radically new forms of childhood, parenthood and family life have been created” but around which understandings are incomplete (Carnevale, et al. 2008; p. 4). They contested the normalization of family-based care of medically complex children. And complex home care has still not been dealt with as a serious health policy issue. This may be because it traverses policy domains, and also considered in policy as an extension of ordinary mothering and packaged in policy as social care. As a result, caregiving mothers have been alienated from policies that affect them. This concern has bearing on the relationship between mothers and the state.
Activists observe that disabled people have also been missing from policy decision-making and have been challenged to influence such policy (Boyce et al. 2001). Prince explains that childhood disability policy is formulated and administered through ministries at the provincial level. Such policies are decentralized, fragmented and uncoordinated (Prince 2002) and share features of weak accountability (Prince, 2004). The latter alludes in part to the discretionary nature of administration of supports. This means that it is difficult for mothers to access care. Instead, they apply for the meagre benefits that provincial governments do offer, having met stringent eligibility requirements.
Childhood disability policy exemplifies what feminist scholars have agreed, i.e. that mothers have been ‘sidelined’ in policy concerning them. Dobrowolsky and Jenson (2004, p.155) state with respect to policy geared to poverty reduction, a narrow child focus removes the citizenship interests of women from the political agenda. Moreover, current practice in policy and rhetoric of considering childhood in isolation from motherhood may reflect a conservative approach, i.e. that although childhood is a bona fide public concern, motherhood is not a public matter. This is problematic where children require complex and particular forms of difficult or challenging care, since the care they require is health care.
The Impacts on Women of Maternal Complexity
Although the features of health and economic support are frequently considered as separate units of analysis, in the situations we discuss, they interact with one another (see Petrenchik, 2008 for example). In 2008 and 2009 publications in Burton, Phipps and Lethbridge examined the economic ramifications of caring for disabled children, and the implications of such care for Canadian women. They concluded that having a disabled child constitutes a social determinant of poorer health and economic status. Further, Burton and Phipps (2009) explain several forms of economic inequality result when caregiving mothers are unable to do paid work. We note what others have observed (see Ryan & Runswick-Cole, 2008, p. 200 and p. 205) which is that there has been an implicit devaluing of disabled children by the state (i.e. such children do not become productive adults for example) and a concomitant devaluing of their mothers. Mothers who, as a result of relentless care provision may become too ill to work, too taxed or tired to work are unable to self-support. Their separation from the labour market means they cannot save for retirement, save a nest-egg, or access employment insurance. Mothers valued by the state do not face these issues in the same way.
While acknowledging the many economic effects of caregiving on mothers, the focus of research about their daily lives, including that sponsored by government, has been on wellbeing. For example, we know that caregiving mothers are sick more often than other mothers (Weeks, 2006). The focus of this area of research and literature has been caregiving mother’s state of mind and ways that can be changed (i..e. Florian and Findley, 2001: Hastings and Beck, 2004).
Caregiving mothers however are not a homogenous group. Their health may be more heavily impacted if they care for multiple disabled children, if they are lone or isolated mothers, or if their child is severely disabled. Brown et al (2008) brought the issue of lone parenting to light. They found that caregiving led mothers to identify as exhausted. Moreover, Research by Nozoe et al. (2014) revealed negative health effects on caregiving mothers. They found that hormonal changes damaged both quality of sleep and sexual function of caregiving mothers as compared to the control group. Nozoe et al (2014) bridge the self-reported psychosocial research, with recent scientific findings (such as research on sleep hygiene and sexual health). Other research conducted by Epel et al (2004) also scientifically backs up claims that caregiving in present arrangements negatively impacts health. Cohen et al’s study also (2016) exposed an elevated mortality rate of mother with children with congenital disabilities – in Denmark which has universal access to health care (Cohen et al, 2016, p. 2516). “This elevated risk was noted both during the first 10 years after the child’s birth, when the mother was likely caring for a dependent child with substantial health needs, and after longer follow-up” (Cohen et at, 2016, p. 2520).
Fairthorne et al (2014) analyzed data that included 300,123 Australian mothers of children born between 1983-2005. Investigating the early maternal mortality and primary causes of death, they studied mothers with children with three disabilities; Down Syndrome (DS), Intellectual Disability (ID) that is not Down Syndrome, and Autistic Spectrum Disorder (ASD). In data on mothers with ID children, they separated data on children with mild versus severe ID and misadventure. Their findings showed caregiving mothers of children with ID and ASD were 150% more likely to die from cardiovascular conditions. There was not a higher incidence of cancer amongst these mothers, only a higher mortality. Their research has not answered all of the questions needed to establish cause and effects of stressors affecting mothers. Nevertheless a cautious approach would include state interventions.
To conclude, the claim that psychological issues negatively affect immunity and vulnerability to disease through impacts on the mother’s central nervous system and hormone status has been suggested (Kuster and Merkle, 2004 ,p.258), with the suggestion of remediation through such approaches as ‘positive coping strategies’ (p262). However, we believe and evidence supports the stressors need to be reduced.
Responses to Research Evidence
To address harms, there must be agreement as to cause of harm, and also who bears remedial responsibility for harm reduction. We support Green’s conceptualization of objective burdens of care (Green, 2007), related to the constraints of poorly co-ordinated and non-responsive systems of supports (Green, 2007, p.155). She distinguishes between such burdens of care, and those to do with feelings and attitudes concerning such care (Green, 2007, p.154). It is the objective costs, such as time commitments, lack of sleep, the effort and expenditures linked to what the state does and does not provide that are our concern.
Although research has acknowledged the challenges of complex care, it remains geared towards “helping” mothers to better manage their own risks with it. In recent research mothers (and fathers) of adults with developmental disabilities found that mindfulness meditation helped deal with feelings of being overwhelmed, fearful, angry and under stress (Lunsky et al, 2017). This intervention did not change the reality that older caregiving parents actually experience these things as a result of weak or missing support. Noteworthy is that a research focus of the lead researcher in this study is psychosocial factors for psychiatric disorder.
In contrast, Manhas & Mitchell (2012) examined the impacts of shifting care for ventilator dependent children from hospital to home,. They concluded that, “the breadth and intensity” of mothers’ responsibilities “demands recognition, support, and re-evaluation” (Manhas and Mitchell, 2012, p.234). They further commented that the hospital to home transition “is not simply about moving a child home. It also entails a shifting of global and unremitting responsibility to a mother…” (Manhas & Mitchell, 2012, p. 234). And they concluded that their findings raised concerns about “the validity of this practice and the implications of expectations of maternal extraordinariness” (Manhas &Mitchell, 2012, p. 234). They did not argue that mothers could improve their ability to provide maternally complex care, nor that they were failing in regards to either capacity to care for or about their children. They questioned whether it was even appropriate to responsibilize them for performing this care at all.
Yet, most studies concerning the wellbeing of mothers conclude by identifying that mothers need to psychologically better manage care they are tasked with. We argue that many of the approaches advanced in this vein may be described as comprising a particular form of ‘self-help’ care literature. Such studies reflect the fact that mothers’ physically and psychologically risky care merit scholarly attention. Yet, this research does not elicit findings that illuminate systemic issues. Most research has evaluated the effectiveness of teaching, training or re-educating mothers how to be less exhausted; how to alleviate their stress; how to manage their depression; to solve their inability to access the sleep required to maintain their own health, i.e. how to deal with the forms of care they have been tasked with by the state. For example, the advice that teams need to lead mothers “to a better health condition and maintain the necessary strength to enable them to continuously take good care of their sons, who are totally dependent on them(Nozoe et al. 2014, p. 138). In our view, these studies have been conducted inside the box of privatized care and minimal state involvement and this approach overlooks objective care realities.
Research from outside the conceptual box is needed. In essence self-help oriented research fails to address the systemic features that undergird psychological distress and physiological harms. What they need cannot be accessed via self-help avenues. Our observation is not entirely novel, for it has been pointed out that most research has focussed on the psychological functioning of caregiving mothers(Leiter et al (2004) p. 381). They state “the extent to which, and under what circumstances, mothers’ caregiving expands to resemble that performed by paid health care providers…” remains unknown (Leiter et al, 2004, p. 382). This determination must impact the lens researchers use to view the problems caregiving mothers report. The framing of self-managed risk is ideological (Toni Delany, 2010). However, ‘self-help’ avenues are not the answer to crises in maternally complex care.
There has been considerable research undertaken “over the past 20 years on adaptation and coping among families of children with a wide variety of disabilities” (Leiter et al. 2004, p.381). The claims are that maternal resilience is essential (Heiman, 2002:Venters and Horton, 2001). Venters and Horton (2001) suggest that coping, improves hope. Hope is sustained by a agency and high levels of hope lead to high levels of agency. This approach however presumes that hopelessness is an incorrect response to the realities some mothers describe, when it is a natural response to inadequate support.
Peter, et al (2007) contested as problematic and unexamined, policy reports that privatized health care for children with complex care needs. In “Negotiating mothering against the odds: Gastronomy tube feeding, stigma, governmentality and disabled children” Craig and Scambler, (2006) observed singular mealtimes. Children who use a gastronomy tube require extensive assistance to get their nourishment. Participating children routinely refused food, vomited, regurgitated, spluttered and choked. Some turned blue during the five to seven hours per day of feeding they receive from primarily their mothers. Some mothers described feeding as “war”, as “a battle” and as “torture” (Craig and Scambler, 2006, p. 1115).
Thus research has accumulated advising mothers who exhibit signs of distress. The focus is on how mothers “cope” or adjust or fail to do so, with reference to so called role-adjustment difficulties (Miller et al, 1992: Raina et al, 2005). It examines mother’s self-esteem and efficacy, which suggests these personal features are the most relevant to amelioration (Johnson Silver et al, 1995). It surveils mothers to gauge whether they manage “OK” (Leonard et al. 1993). Where they are not OK, it suggests support is needed for excessive care (Leonard et al, 1993) to continue and to prevent institutionalization of children (or their mothers). There are further discussions on how caregivers should “adapt” (Barakat and Linney, 1992: Canam, 1993) to their circumstances. The stated aim presumes that it is possible, even though as Canam (1993) herself states, the task of ‘parents’ is to “prevent the accumulation of stress that can overwhelm the family’s resources and lead to crisis” (Canam 1993).
Another study recruited parents from wait lists with Disability Services Ontario (DSO) (Lunsky et al, 2017, p.1776). DSO has been criticised for shortfalls in services to developmentally disabled people. This has been covered in the media as a situation causing some mothers to abandon their disabled children (Schnurr, 2013: Eastwood, 2014). The message this research provides is that exhausted parents waiting for supports should meditate to improve how they “experience negative emotions by” learning “non judgemental acceptance of negative sensations as they are perceived.” (Lunsky et al, 2017, p.1769). This further suggests that their perceptions are part of the problem of the crisis in supports. The subtext is that exceptional care can be undertaken if mothers can be brought into line with it psychologically. However, cases we examine below reveal that many mothers cannot provide care they have been assigned. Although mothers may benefit from interventions suggested, the studies fail to deal with the primary issues. The cases below indicate that caregiving mothers include psychologically aware, robust, resourceful pragmatic and dedicated women. Women who in other contexts would be deemed resilient, highly competent, and self-efficacious. Words like mastering, coping, adaptation and adjustment ring hollow in the face of overwhelming evidence that no one woman should be tasked with continuous maternally complex care. This is why the problems have not gone away.
Unjust State Outcomes
Haslam comments that women like her are pushed to the limits of endurance and cannot “…be expected to carry excessive burdens of responsibility in caring for loved ones in our homes. We need to move toward social care and shared responsibility. Neither can we be expected to place them in large crowded institutions ….” (Haslam, 1994. p.115). She reports being trapped by care policy which presented her with painful ordeals and left her with deep wounds (Haslam, 1994. p.115). She described letting go of the illusions of motherhood and community living (Haslam, 1994, 115). Her words echo in discussions that follow.
One under-discussed outcome of unmet maternally complex care needs is child loss.This happen in different ways. The legal loss of a child to the state is one. This is both judicially and socially understood to cause great distress to mothers, as articulated in the Supreme Court of Canada case New Brunswick v G(J) in 1999 (at paragraph 61) and which situated the issue in a constitutional law context. In Canada there are legal processes involving mothers with disabled children, however. For example, in the absence of little state care available to mothers, Ontario offers to take custody of disabled children. The Ontario Ombudsman examined this practice in Between a rock and a hard place: Parents forced to place their children with severe disabilities in the custody of children’s aid society to obtain necessary care (Ombudsman, 2005). This report describes custody loss of disabled children as a practice that has been occurring since 1997.
The next example of child loss is sensitive and our comments are very preliminary. They have to do with loss of life and there are examples in common law jurisdictions, where the state has largely withdrawn from the care provision, leaving mothers responsible for it. In 2014, Angie Robinson killed her disabled son and then herself. Her suicide note on Facebook stated, “'[M]ore, more, more needs to be done for our teens with special needs, they are neglected … Canada needs more residential and respite care for families hoping to keep their children at home” (Christie, 2014). Canadian media reported “Ms. Robinson was described by witnesses as a gentle soul who cared deeply for her son.” (Robinson Inquest, 2015).
Cases coming to media attention often involve single/separated mothers, some of whom are middle class. Blum’s (2015) research indicates that social and economic status plays a significant role in how successfully mothers are able to advocate and access what their children require from the state. When Robinson sought help from the government, she was informed no respite was available (Trumpener, 2015). She and her son died in the wake of that decision. Angie was a single, depressed, abused woman, and these statuses played a role in her distress. However her suicide note only identified the unmet need of state care for her son, and not these other issues.
Cases involving partnered mothers reliant on state supports are instructive. They support our claim that the current imbalance between state and maternal care provisioning is untenable. Even under what social conservatives consider optimal circumstances for raising families, (one residence and two parents with one attached to the labour force). Even with this contestable family model, state support can be inadequate. In 2014, in Britain, an upper-middle-class married mother, Tania Clarence, killed her three disabled children, and then attempted to kill herself when her husband was vacationing overseas, with their non-disabled daughter. Media stated the family’s socio-economic status was a barrier to support, their social status warding off child protection inquiries (Ward, 2015). This implies maternal incompetence and falls into the approach described in the literature above, where mothers need to be fixed.
Clarence’s lawyer and husband informed the court that she had been an excellent mother who had become overwhelmed and depressed as a result of extraordinary care demands (Ward 2015). Media reported Tanya was under continual surveillance regarding the medical care of the children and had dealt with over eighty different medical professionals and social workers in the previous three years (Gayle, 2015). Tanya had been depressed in the past (Ward 2015). In his sentencing remarks Justice Sweeny commented that the family had spent all their money on a house and adapting it to meet the children’s accessibility needs. He opined the mother “clearly and rightly appreciated the value and worth of the lives of the children, and wanted (for them) as normal a family life as could be achieved. You did not want either the house or the children to be institutionalised and later (once the children were of school age) you enjoyed a good relationship with their schools… you devoted yourself entirely and ceaselessly to the care of the children.” (R v Tanya Clarence, 2014, p. 3). The Judge’s remarks invite discussion. He praised the mother. However, the societal expectations, and the extraordinariness that Manhas and Mitchell (2012) identify are applied to mothers and by which they are measured by courts, was her undoing, and the undoing of her children. The state expected her to look after them at home full-time and long-term, and the court judged her performance accordingly. No one else was in court to answer to the state’s failures to more closely attend to need of care and support.
Jane Raca is an upper middle-class married mother from Britain who also struggled with support. She was a litigator until she began caring for her disabled son (Gentleman, 2013). After being informedthat he did not qualify for services, Raca disputed with the state. She stated in evidence that “my marriage was breaking down and I was suicidally depressed” (Raca, 2013). In an interview regarding her lawsuit, she described having “just been through a massive legal fight to get” her son a placement. When asked if she placed her son in residential facility for her own “convenience” she responded with “whatever people think, if I’d carried on having James at home I’d be dead.” (Ferrari, no date). Thus, being happily married, having legal training and professional income may not protect mothers, making disability health-related supports a universal maternal-child policy concern. These cases show that maternally complex care is unique, and bears little relation to parental capacity understood as good enough parenting in child welfare discourse or efficacy in self-help approaches.
There are other examples. In 1994, Ontario’s Cathy Wilkieson killed her disabled son and herself a few weeks after being refused 13 hours of additional care by the Ontario government (The Interim, 1994). In 1996, Danielle Blais drowned her son and then tried to kill herself. Her husband had left, leaving her responsible for care. In their case, the school, the Quebec social service system and the Quebec Autism Society were aware she needed supports. La Confédération des Organismes de Personnes Handicapées du Québec informed Quebec that it was placing disabled children in jeopardy. Not mothers. Finally, in British Columbia in 2011, a disabled mother died while caring full-time for her severely disabled daughter. The girl was found alone next to her deceased mother. The B.C. Representative for Children and Youth (2011) pointed to gaps and made recommendations. Rather than viewing these cases as isolated, we believe they are situated on a spectrum of outcomes associated with weak support. They may be the end point that may follow unsuccessful strategies to ameliorate extreme responsibilities, that the public-private care imbalance described by Peter at al. (2007) a decade ago.
Finally, some mothers seek support through law. Family law reveals that mothers cannot simply get jobs to defray costs of care, to self-support while providing care and alleviate a host of related stressors. Research supports what is found in cases. It has found that “the time cost of caring for a child with severe disabilities is significantly greater than caring for a non-disabled child and does not decrease with increasing age” (Curran, et al 2001 p. 532). Such cases show that problems with care are fact-based and care-driven. In King vSutherland for example, issues raised were termination of the adult child support obligation from the father of a severely disabled woman and inquiry into provincial government responsibilities for her care. Accessing private support for disability care is problematic, since claims will be opposed and or termination of payments sought, which often leaves mothers in poverty. As well as in illustrating mother’s inability to remain in paid work, family law shows how they are treated in efforts to secure support. In Vivianv Courtney the father sought to end his child support obligations, asserting that his daughters’ medical issues were irrelevant as it is the “provincial government’s policy that the social safety net, including social services, are intended to be the primary mode of financial support for adult children that are disabled.” (Vivian v Courtney, 2010, at para 11). The court however opined “[T]he fact that Ms. Courtney is alive and able to live at home is a testament to her spirit, as well as the dedication, advocacy and hard work of her mother.” (Vivian v Courtney, 2012, para 6). The judge added, “Parents of children of such chronic debilitating and ultimately fatal illnesses are performing a job that would occupy four or five employees in a long-term care facility”(Vivian v Courtney, 2012, para. 6). The courts comment points to crushing levels of care.
Armstrong, P., Amartunga, C., Bernier, J., Grant, K., Pederson, & Willson, K. A. (2001). Exposing privatization: Women and health care reform in Canada. Aurora, ON: Garamond Press.
Barakat, L. P., & Linney, J. A. (1992). Children with physical handicaps and their mothers: The interrelation of social support, maternal adjustment, and child adjustment. Journal of Pediatric Psychology, 17(6), 725-739.
Boyce, W., McColl, M. T., Bickenbach, A., Crichton, S., Andrews, N. G., & Aubin, A. D. (2001). Seat at the table: Persons with disabilities and policy-making. Montreal, QC: McGill-Queen’s University Press.
Boydell, K. V. (1996). Mothering adult children with schizophrenia. The hidden realities of caring. Unpublished doctoral dissertation. York University, Canada.
Brown, R. T., Weiner, L., Kupst, M. J., Brennan, T., Behrman, R. Compas, B., Elkin, D. Fairclough, D. L., Friebert, S., Katz, E., Kazak, A. E., Madan-Swain, A., Mansfield, N. Mullins, L. L., Noll, R., Farkas Patenaude, A., Phipps, S., Sahler, O. J., Sourkes, B., &
Burton, P., & Phipps, S. (2009). Economic costs of caring for children with disabilities in Canada. Canadian Public Policy, 35(3), 269-290.
Burton, P., Lethbridge, L., & Phipps, S. (2008). Mothering children with disabilities and chronic conditions: Long-term implications for self-reported health. Canadian Public Policy. 34(3), 359-378.
Burton, P., Lethbridge, L., & Phipps, S. (2008). Children with disabilities and chronic conditions and longer-term parental health. Journal of Socio-Economics, 37(3), 1168-1186.
Canam, C. (1993). Common adaptive tasks facing parents of children with chronic conditions. Journal of Advanced Nursing, 18(1), 46-53.
Carnevale, F. A., Rehm, R. S., Kirk, S., & McKeever, P. (2008). What we know (and do not know) about raising children with complex continuing care needs. Journal of Child Health Care, 12(1), 4-6.
Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), e48 at e53.
Cohen, E. Horvath-Puho, E. Gray, J.G., Pederson, L., Adler, N., Gulbech Ording, A., Wise, P.H., Milstein, A., Toft Sorenson, H.. (2016). Association between the birth of an infant with major congenital anomalies and subsequent risk of mortality in their mothers. Journal of the American Medical Association, 313(23), 2515-2524. doi:10.1001/jama.2016.18425
Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. D. Z. A. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529-538.
Craig, G. M., & Scambler, G. (2006). Negotiating mothering against the odds: Gastronomy tube feeding, stigma, governmentality and disabled children. Social Science and Medicine, 62, 1115-1125.
Curran, A. L., Sharples, P. M., White, C., & Knapp, M. (2001). Time costs of caring for children with severe disabilities compared to caring for children without disabilities. Developmental Medicine and Child Neurology, 43(8), 529-533.
Dalley, G. (1996). Ideologies of caring. New York, NY: Macmillan.
Delany, T. (2011). To entrap and empower: Maternal responsibility in the age of neo-liberal health. Unpublished doctoral dissertation. University of Adelaide, Australia.
Dowbrowolsky, A., & Jane Jenson, J. (2004). Shifting representations of citizenship: Canadian politics of ‘women’ and “children. Social Politics,11(2), 154-180.
Eastwood, J. (2014, May 20). Mom ready to leave autistic daughter in government’s care. thestar.com.
Epel, E. S., Blackburn, E. H., Lin, J., Dhabhar, F. S., & Adler, N. E. (2004). Accelerated telomere shortening in reponses to stress. (2004). Proceedings of the National Academy of Sciences of the United States of America, 101(49), 17312-17315.
Fairthorne, J., Hammond, G., Bourke, J., Jacoby, P., & Leonard, H. (2014). Early mortality and primary causes of death in mothers of children with intellectual disability or autism spectrum disorder: A retrospective cohort study. PLoS ONE, 9(11).
Florian, V., & Findley, L. (2001). Mental health and marital adaptation among mothers of children with cerebral palsy. American Journal of Orthopsychiatry, 71(3), 358-367.
Gayle, D. (2015, November 23). Husband of Tanya Clarence rejects report into children’s deaths. Theguardian.
Gentleman, A. (2013, January 15). Jane Raca: Fighting for life support for her disabled son.
Gilmour, G. (2002). Creeping privatization in health care: Implications for women as the state redraws its role. In Cossman, B., & Fudge, J. (Eds.), Privatization, Law andthe Challenge to Feminism. Toronto, ON: University of Toronto Press.
Green, S. E. (2007). ‘‘We’re tired, not sad’’: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 65, 150-163.
Haslam, D. D. (1994). Public policy that is hazardous to women’s health: Privatization and longterm care. Canadian Woman Studies, 14(3), 114-116.
Hastings, R. P., Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338-1349.
Heiman, T. (2002). Parents of children with disabilities: Resilience, coping and future expectations. Journal of Developmental and Physical Disabilities, 14(2), 159-171.
Herring, J. (2013). Caring and the law. Oxford, UK: Hart Publishing.
Horton, T. V., & Wallander, J. L. (2001). Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabilitation Psychology, 46(4), 382-399.
King v. Sutherland, 2004 CanLII 35094 (ON SC)
Kuster, P. A., & Merkle, C. J. (2004). Caregiving stress, immune function, and health: Implications for research with parents of medically fragile children.Issues in Comprehensive Pediatric Nursing, 27, 257–276.
Leiter, V., Wyngaarden, M., Anderson, B., & Nora Wells. (2004). The consequences of caring effects of mothering a child with special needs. Journal of Family Issues, 25(3).
Leonard, B. J., Johnson, A. L., & Brust J. D. (1993). Caregivers of children with disabilities. Children’s Health Care, 22(2), 93-105.
Lunsky, Y., Hastings, R. P. Weiss, J. A., Palucka, A. M., Hutton, S., & White, K. (2017). Comparative effects of mindfulness and support and information group interventions for parents of adults with ASD and other developmental disabilities. Journal of Autism and Developmental Disorders, 47(6), 1769-1779.
Manhas, K., & Mitchell, I. (2012). Extremes, uncertainty and responsibility across boundaries: Facets and challenges of the experience of transition to complex pediatric home care. Journal of Child Health Care, 16(3), 224-236.
McKeever, P., & Miller, K. L. (2004). Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices. Social Science and Medicine, 59(6), 1117-1191.
McKeever, P. (1995). Between women: Nurses and family caregivers. Canadian Journal of Nursing Research,26(4), 15-21.
McKeever, P. (1991). Mothering chronically ill, technologically-dependent children: An analysis using critical theory. Unpublished doctoral dissertation. York University, Canada.
Miller, C. A., Gordon, R. M., Daniel, R. J., & Diller, L. (1992). Stress, appraisal and coping in mothers of disabled and non-disabled children. Journal of Pediatric Psychology. 17(5), 587-605.
New Brunswick (Minister of Health and Community Services) v G.(J.),  3 SCR 46, 216 NBR (2d) 25.
Nozoe, K. T., Hachul, H., Hirotsu, C., Polesel, D.N., Moreira, G.A., Tufik, S., & Andersen, M. L. (2014). The relationship between sexual function and quality of sleep in caregiving mothers of sons with Duchenne Muscular Dystrophy. Sexual Medicine, 2(3), 133-140.
Office of Ontario Ombudsman. (2005). Children with special needs: Between a rock and a hard place. Toronto, ON: Ombudsman Ontario.
Panitch, M. (2008). Disability, mothers and organization: Accidental activists. New York, NY: Routledge.
Peter, E., Spalding, K., Kenny, N., Conrad, P., McKeever, P., & Macfarlane, A. (2007). Neither seen nor heard: children and homecare policy in Canada. Social Science & Medicine,66, 1624-1635.
Raca, J. (2014, April 27). If my disabled son still lived at home, I wouldn’t be here now. The Telegraph.
Raina, P., O’Donnell, M. Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., Swinton, M., Zhu, B., & Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626.
Ryan, S., & Runswick-Cole, K. (2008). Repositioning mothers, disabled children and disability studies. Disability and Society, 23(3), 199-210.
Silver, E. J., Beauman, L., & Ireys, H. T. (1995). Relationships of self-esteem and efficacy to psychological distress in mothers of children with chronic physical illness. Health Psychology, 14(4), 333-340.
Vivian v Courtney, 2010 ONCJ 768 and Vivian v Courtney, 2012 ONSC 6585.
The Interim. (1994, December 31). Murder-Suicide in Hamilton.
Vanhala, L. (2009). Disability rights activist in the Supreme Court of Canada: Legal mobilization theory and accommodating social movements. Canadian Journal of Political Science/Revue Canadienne de Science Politique, 42(4), 9981-1002.
Ward, V. (2015, November 23). Tanya Clarence: Family’s middle-class status blamed for failure to care for mother who smothers three children. The Telegraph
The McCrea case involved mothers on maternity leave who became sick, some life-threateningly so, and who applied for Federal disability benefits, which were denied.
The reason provided was that they were receiving maternity leave benefits. This disentitled them to sick leave benefits.
Maternity benefits conflated somehow with disability benefits?
As a result of this administrative decision, several mothers joined to certify a class action proceeding against the Canada Employment Insurance Commission. A tall order as litigation goes. It is not a simple matter to sue the Federal Government.
Although based on several claims, only one of their claims was certified. That was for negligent implementation of the Act in question. One aspect of the negligence they claimed took place was the pattern of denials of sickness claims by very ill mothers on maternity leave. Notably, this pattern of denials continued even after their claim was brought.
Early on, the government settled with some employees in the this litigation, and removed a clause in the benefit scheme that was problematic.
In this dispute the mother’s wanted law that supported them, while also mothering.
More specifically, the mother’s action was for denial of sick benefits was for provisions under the Employment Insurance Act, SC 1996 c 23, regarding in particular parental benefits under EI when parents became ill. The claim alleged that the Canadian Employment Insurance Commission and Service Canada had failed to properly implement the amendments, which resulted in individuals who were on parental leave being denied their claims for sickness benefits.
The class initially claimed the torts of misfeasance of public office, negligent misstatement and unjust enrichment.
The Federal Court certified the class proceeding for negligent implementation of the Act. The government appealed and that litigation went on for several years. See the more recent decision at the Federal Court of Appeal.a
The motion for the class action for $450 million in damages was heard in the Federal Court in 2015 and the plaintiff mothers succeeded. It is quite uncommon that mothers litigating as a group prevail, as they did.
Below is a photo of named and lead plaintiff and Calgary mother Jennifer McCrae was sources from the Toronto Star online (ref’d below with link to its source).
Delving more into the actual provision in question, it provided that disability benefits were available only to people who would otherwise be available for work. Being at home taking care of an infant was not that.
Turning to the particulars of Jennifer McCrea’s situation, she had contributed to the EI program, had a baby, and received maternity leave payments. However, she became seriously ill while on maternity leave, and so she applied for sick benefits. Her request was denied. She then brought a claim arguing that the strict interpretation of the Act, which required that a sick benefit-recipient be available for work during coverage, was restrictive and that government was negligent in its refusal to allow the sick benefits to sick new mothers.
She pointed out that sick pregnant workers could access the 15 weeks of sick leave followed by maternity leave under the legislation, but that statutes excluded new mothers with medical disabilities/illnesses.
In keeping with the topic overall of Law’s MumBlog. I note that after the McCrea case was certified by the Federal Courts as a class action, the federal government passed the Helping Families in Need Act. This Act contains provisions based on compassionate grounds and critical illness, a positive addition in the area of disability support. In this regard, it offers a maximum of 52 weeks leave for care of a critically ill child. However, this is not the same thing as a provision concerning care for a chronically ill or severely disabled child.
In that benefit scheme, the definition of critically ill child provided by government excludes a child who is always severely disabled. A critically ill child is defined in that statute is “a child who has a life-threatening illness or injury, that can include various acute phases of illness and for which continued parental care or support is required.
This does not include a child with a chronic illness or condition that is their normal state of health. It is evident that there must be a significant change from the child’s normal or baseline state of health at the time they are assessed by a specialist medical doctor. Which is a separate – but definitely related – care law issue for complex care mothers, in particular. However, given that we’re talking about Federal benefits here, which many caregiving mothers are simply not eligible for because they are not federally employed, it is not something I will focus on.
Suffice it to say that this support policy to mothers sidesteps the issue of what happens when a worker gives birth to a severely disabled infant. If she had a critically ill baby, one wonders if she would have difficulty accessing the additional benefit. Either way it may not be easy to access disability support of any kind. See “EI Benefits for Parents of Critically Ill Children – Overview”, (7 June 2016) Government of Canada, online: https://www.canada.ca/en/services/benefits/ei/ei-critically-ill-children.html
The McCrea case offers another example of how working mothers’ state supports fail in the setting of severe illness or disability. It is an example that invites one to consider government’s rejection of the claims to support in the convergence of disability, mothers, infants and care.
After 6 years of litigation, the Federal Court approved a class-action settlement. Ottawa is ordered to pay approximately $4,000 in sick benefits to approximately 2,000 -mostly mothers – who were seriously ill during their maternity leave, but who were denied money.
As noted above, McCrea’s lawsuit began as a tort case. However on its facts, the case speaks volumes about the troubled status of caregiving mothers equality rights in public law. Joyfully the mothers prevailed, which is not a common occurrence in the setting of medical disability and support policy where children are also in the need-of-support frame.
Class Action Lawsuit for Mothers with Severely Disabled Children?
Mothers understand all about risk.
In the photo above my sister Maggie and I along with our parents were visiting a couple in Toronto – the purpose was to purchase this furry fella – as our family pet. If you guessed that it was our mother who put her foot down, you guessed right. She did.
Child preservation is at the heart of mothering. We understand all forms of risk and do so in particular mothering contexts. Anne Larcade understood all about the risks her son faced.
Toronto 2006.In a unanimous decision released today, the Ontario Court of Appeal allowed Ontario’s appeal in Larcade v. Ontario (Minister of Community and Social Services). The court overturned the also unanimous lower Court decision that would have allowed the lawsuit to proceed as a Class Action.
Thousands of Ontario’s most severely disabled children are affected by this decision. Including of course the named plaintiff, caregiving mother, Anne Larcade and her son Alexandre.
They alleged that Ontario was negligent in failing to meet its obligation to provide services for severely disabled children that ought to have been provided through Special Needs Agreements. The suit claimed that the Harris government stopped providing the agreements contrary to Ontario’s (then) child welfare statute. The claim was that s a result of the Ontario’s negligence, families were forced relinquish custody of their children to the government in order to obtain critical services and supports. This was not a claim about ordinary care. It was a claim about extraordinary care.
In May 2005 the Divisional Court certified the action as a class proceeding.
Anne Larcade the named plaintiff in the litigation stated to media that she was distraught by the decision. “This decision is not only bad for myself and Alexandre, but for the thousands of other families with vulnerable, severely disabled children living in Ontario.”
“I do not understand how, in the face of the Report of the Ombudsman of Ontario (May 2005) that concluded a terrible injustice was done to these children, that the Court could find that we had no right to even sue the Government.” She continued with the comment that “According to this decision, the Government of Ontario can force good parents to surrender custody of their children to the Province and you can’t do anything about it.”
The Ontario Ombudsman’s legal team in fact had conducted a thorough investigation into what was happening – parents being asked to legally abandon their children under a child protection provision for abused and neglected children who came to the attention of authorities. This was a provision that deeply disturbed non-abandoning mothers who needed nursing and other support for medically fragile complex care children.
Larcade appealed the ONCA decision to the Supreme Court of Canada. However, the SCC did not agree to hear an appeal.
The issue of need of complex forms of care did not go away, of course. In a little known case, Children’s Aid Society of Haltonv J.A.1 & J.A.2, 2011 ONCJ 624 the same issue – namely the coercion of caregiving mothers under provincial policy to agree to abandonment as a legal reason to access complex care – was brought to the attention of a judge. This time it was in a proceeding that involved criminal. family and child welfare law.
The facts of J.A.1 are that both of the parties’ children had been in the primary care of their mother from the date of separation. During 2009, the father had been exercising access to both of his children at a supervised access centre, on a family law court order issued on consent. In 2010, the child was “apprehended” by the regional children’s aid society because the mother could not care for their disabled child, M.A., at which point the parents consented to undergo a custody and access evaluation.
The circumstances of the mother at the time of the staged (by the mother) apprehension are set out in the case as being in the setting of the deterioration of the child’s behaviour, believed to have occurred with the end of his behavioural therapy and the start of a new program. The decision states the mother had funding for two respite workers “to assist” with treatment and with care of her child (whom she wanted and loved). At the time of the apprehension, the mother was working with one respite worker and with her own mother in caring for the child.
In spite of having three other adults to assist with care, the evidence of the pediatrician was that in the setting of behaviour becoming increasingly difficult to manage, the mother was exhausted, frequently breaking down in his office. The physician’s evidence was that the care needs would not be solved with week or weekend respite, and that the family had exhausted all of its resources. He recommended placement, given the lack of adequate state supports.
The child (M.A) was “apprehended” after his mother brought him to a hospital emergency room and informed a physician there that she could no longer care for him, leaving him there so that child welfare authorities would be alerted. He was placed in a residential treatment program and a child protection application was brought against the parents.
The affidavit the mother provided in response stated that the principal of the school, the IBI therapist, and the primary respite worker all supported the plan of care she put forward, which advocated for a residential placement. The mother’s materials explained that the school board had consulted its autism expert and had repeatedly called the mother to collect the child from the school because of difficulties. The materials also set out that the grandmother, the mother herself and two respite workers had been caring for the child.
In the initial motion to apprehend, the Society agreed with the mother’s position that the child be placed in a residential program for seven months as a ward of the Society. As the decision notes, on return of that motion, the Society had changed its position, seeking instead to place the child in temporary custodial care with the father, with the supervision both of the father’s parents and subject to society supervision. The mother did not agree to this newly proposed plan of care.
In the end, the court held that as the child’s “primary caregiver was unable to care for him, even with the assistance of two primary respite workers, and at the time of the apprehension, the assistance of one full-time respite worker and her mother” and given that “professionals involved in M.A.’s care have recommended that he be placed in a permanent residential treatment home that will meet the special needs of a child with severe autism that is where he should be placed.
A finding was made under s 37(2)(b)(i), which is Part III of the Ontario CFSA dealing with child protection. Subsection (i) is for a finding of abandonment. The mother brought attention to what she submitted was the mischaracterization of the reasons for the placement of her son into a residential facility.
The Judge states that in its protection application dated November 29, 2010, the Society seeks a finding that M.A. has been “abandoned” by his mother… It is not in dispute that M.A. was in the Respondent mother’s care and charge at the time of the Society’s apprehension of the child. The Respondent mother does not agree that she has abandoned M.A., but rather that she was no longer able to care for him.
This mother had recently left a violent relationship, she had acquired serious health problems, and she had a job that she needed to support herself as a sole-support mother with another child to care for.
Yet, the legal finding of abandonment of a child, whom she was in the active process of supporting in a great many domains, troubled her enough to raise it in her Reply to the Child Protection Application served on her.
Florence Nightengale was a nurse most famous for raising an alarm socially and politically to relay that wounded soldiers were being being delivered poor care by overworked medical staff in the face of what she saw as official indifference. Today, publicly funded pediatric homecare programming in Ontario is identified as a setting where serious care-related problems are being encountered by mothers with complex care children. In this series of talks and discussions, four mother-advocates who have themselves provided extensive complex care at home, talk about the problems they and others have experienced. They further suggest steps that need to be taken in order to ameliorate the delivery of care at home to highly vulnerable and medically complex children in Ontario. These advocates, from diverse backgrounds, have published and spoken publicly about their concerns.
This webinar is delivered in four partsas follows:
What does Success Look like For Us? Should we Place Solutions in Health Care or Community or Both? (D. Thomson)
Support of Maternally Complex Care in Medicalized Childhood Settings: From the Trenches of Litigation (S. Jennings)
Lack of Trained Staff in the Community to Nurse Kids Who Live at Home: Impacts on Families of this Health Care Failure. (M. White)
Building Capacity Through Policy and Lived Experiences for Children with Medical Complexity and their Families in Ontario (S. Severino)
Re photo of the child and her mother was taken at a hearing where the mother was dealing with the issue of “whether health regulators were right to insist she get 18 hours each weekday of nursing care for her daughter, and fewer on the weekends, instead of the 24 hours her daughter’s pediatrician says are necessary.” This quotation is from an important article by by Carol Marbin Miller & The Miami Herald entitled “How Florida limits care for its most medically fragile kids” which may be found here: https://www.tampabay.com/news/how-florida-limits-care-for-its-most-medically-fragile-kids/1268935/
Ryan Dobson with his mother Cynthia and his maternal grandmother
This is the very first post on my new blog! Stay tuned for more & subscribe below to get notified when I post new updates.
This wonderfully warm photo was taken by Diane Doiron of the National Post back in 1999. https://www.fact.on.ca/newpaper/np99070m.htm In it we see caregiving mother Cynthia Dobson with her laughing young son Ryan and the maternal grandmother, also interviewed by the National Post.
Cynthia & Ryan were involved in a tort case, along with Cynthia’s father who acted as guardian ad litem for Ryan. Cynthia was situated in an adverse relation to her young son in this case, which you can access at Dobson (Litigation Guardian of) v. Dobson, 1999 CanLII 698 (SCC),  2 SCR 753, <http://canlii.ca/t/1fqkz>, retrieved on 2019-11-27.
Dobson v Dobson (Litigation guardian of) was heard in the Supreme Court of Canada. In this, my very 1st Blog Post, I provide a Case Brief and Commentary. So, first I provide a basic case brief of Dobson. And then present my commentary which offers a few thoughts on what was going on in this case from the legal perspective of a caregiving mother.
The Dobson case involved a car accident that happened in very bad weather. A pregnant woman, Cynthia Dobson, was driving the car. The accident she was in caused serious physical injury to her fetus and the fetus was subsequently delivered by c-section the day of the accident.
The Maternal grandfather of Ryan, acting as litigation guardian sough to assert that his daughter Cynthia owed a duty of care to her son, Ryan. This raised some thorny legal issues in the area of motherhood. I will speak to that issue after I relay how the court examined this situation.
The primary legal issue identified by the court in this case was whether or not Cynthia Dobson (and pregnant women more generally) can be found liable for injuries caused to a fetus as a result of their own actions.
The Supreme Court of Canada decided that even though the relationship between a women and a fetus met part of the legal test in a dutyof care analysis (reasonable foreseeability and proximity for legal negligence) for public policy reasons the court would not impose a duty of care on Cynthia Dobson.
Thus a fetus, when born, could not sue their own mother. The reason the matter was decided this way, was that the court found that imposing liability on a woman when pregnant threatened her bodily integrity, her privacy, and also her autonomy.
The court clarified that a child ‘born alive’ could sue a third party for injuries caused to them before their birth, but they cannot sue their own mother in a like way.
The reasoning of the court was that if a duty of care was found to exist between a mother and her ‘unborn child’, then mothers more generally would find themselves legally liable whenever engaging in activities that could potentially cause injury to a fetus were she pregnant. This would then impact all pregnant women as well as those who may become pregnant one day.
Moreover, the prospect of conducting a trial against one’s own mother could have significant emotional ramifications and harm the relationship, opined the Supreme Court of Canada. Ultimately, the court determined that this was a policy issue for the legislature to tackle and no duty of care was imposed on Cynthia Dobbson.
Justice Major did not agree with the majority of the other judges. He found that while a mother had no duty of care to a fetus, she does have a duty of care to a child (born alive), so long as she knew or should have reasonably known that she was expecting at the time the incident took place. He found there to be no legal nor public policy reason to decide against a pregnant woman being liable in this manner on the basis that it would restrict the mother’s freedom.
His opinion was that this pregnant woman did not have a right to be a negligent driver, and therefore the ‘born child’s’ claim does not impede on any legal right of the pregnant woman. To summarize his view, to grant a pregnant woman immunity from the consequences of her conduct would set up a legal conundrum since it would give an advantage to a defendant that no other defendant in tort law would have.
Law’s Mum Case Commentary
Graeme Hamilton (see link above) wrote that this “landmark” case “rallied forces on both sides of the abortion debate and led Supreme Court justices to muse over the rights of a foetus.”
First – the National Post wrote that Cynthia Dobson was driving her car toward Moncton from the family home & was following her husband’s vehicle along with other drivers on a windswept highway. Her car hit a pile of slush & she swerved into the other lane, crashing into a moving truck.
So, what was and is the Dobsonreally about? What was it that they sought and why did they need to attempt this legally drastic action?
As stated when interviewed by The National Post the family stated the law suit was “about looking after Ryan.” It was about care. It was about support. Of a child with a significant medical condition.
“It’s being done for Ryan’s benefit and Ryan’s benefit alone,” said Ann MacAulay, half of the wife-and-husband legal team representing Ryan. Bev Price, Ryan’s maternal grandmother stated in the same interview that “It’s suing the insurance company for Ryan’s sake,” added . “That’s what it has always been.”
The “problem” was, that to be able request that the insurance company pay out, Ryan — represented by his maternal grandfather, Gerald Price, as litigation guardian — needed to be able to sue his own mother in tort, for legal negligence. As the National Post writer noted, no child in Canada had sued their own mother for injuries sustained while she was pregnant.
I address this case to make one point only.
It is that mothers with severely disabled children frequently agree to socially & legally risky things in order access support & care for their medically disabled children. Dobson is nothing new in this particular regard.
In this case, had the Supreme Court of Canada found that young Ryan could sue his own mother in negligence, and had he been able to show that she had breached a duty of care that caused his condition, then that would effectively have operated as nasty precedent in the life of his mother. Such a finding would ‘legally colour’ how she was perceived outside of tort law. And even socially. And as the court noted, there could be harmful emotional aspects as well.
Were child welfare authorities to investigate the family, as is too often the case where there are grossly under-supported mothers with medically complex kiddos & youth, their investigation would uncover that Cynthia Dobbs had already been found legally negligent by a court.
Although the test for negligence under child welfare legislation is not the same as it is in tort law, contrary to the children’s song sticks and stones, names (like “negligent mother”) can cause legal damage down the road.
Dobbs was prepared to assume all of that risk, for Ryan. For his future care. So that his needs could be met. She would not have appreciated that it may also have made him more legally vulnerable.
All of which means that Dobson v Dobson was not at all what it was framed as at the time. It was about disability care & support in the context of #complexmothering. And it was about the extraordinary lengths a caregiving mother would go to to access it.
How was that missed you may wonder? It was missed because complex care of infants and children is way off the radar in law. Not only in tort law but in many areas of law where mothers seek support. It was missed because it was not the issue that went before the court. The practice of finding ways and means to access support for severely disabled children is much the same now, as it was in 1999, when this cases was decided. Mothers try this way and they try that way, and as in Dobson often times they do not prevail.