“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.
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In a 2003 publication Canadian disability rights scholar Marcia Rioux observed that shifting ideological paradigms, shifting legal standards and ever-changing policy programming makes advancing rights for people with disabilities a huge challenge.This has been true historically and remains true today.Especially in the area of state supports and especially for disabled kiddos (both sides of the border).
In this post I’m going to discuss some aspects of a landmark decision in the context of Rioux’s insight. First, why talk about an old US case though?
Another is that the sheer simplicity combined with the legal complexity of this case has interested me for over a a decade. I’ve written about it before, in this book chapter Jennings, S. (2013). Advancing the Rights of Children with Neurological Conditions in Life Quality Outcomes in Children and Young People with Neurological and Developmental Conditions. Ed. G.M. Ronen and P.L. Rosenbaum. Mac Keith Press, London, England.)
Another reason is simply because we don’t have a Zebley case in Canada. In Canada most instrumental (tangible) childhood disability supports are provided provincially and territorily and the lawsuits are against the provinces and territories. The track record of (mostly) mothers litigating regarding these has not been a strong one in terms of results. Zebley on the other hand is a Federal childhood disability right decision for disabled child rights to support. It had teeth.Big teeth. Its impact is still being felt today, as this Youtube clip Zebley at 25: Community Legal Services’ Celebration of Children’s SSI illustrates: https://www.youtube.com/watch?v=uYnFfXodKC8
The Zebley decision was also a poverty rights decision at the intersection of disability. It successfully put some ‘security’ back into the phrase ‘Social Security’. This can be seen in the area of children with disabilities rights to some monetary support in the US in theaftermath of the landmark Supreme Court decision Sullivan v. Zebley (1990) (this is not to say that this case is a panacea for the global support of children with disabilities south of the border, it’s not).
Young Brian Zebley was born in 1978. At the time of the case, he was a very young disabled boy born into a poor family. He lived with a congenital brain condition, visual and intellectual impairments, developmental delays, and partial paralysis (Erkulwater 2006). Thus, he was living with multiple impairments but his family was nevertheless denied child disability benefits.
Two child rights lawyers brought an action against the government to have the childhood disability law’s assessment process changed. The Sullivan v. Zebley (1990) matter was brought as a class action lawsuit on behalf of children whose claims for SSI benefits had been denied (Doolittle 1998).
According to Erkulwater (2006) over 300000 children were represented by the class.
This case because is a reminder that class actions for children with disabilities are possible.
As in the (much smaller) Canadian case of Larcade v. (Ontario) Ministry of Community and Social Services (2005), a lower court at one stage in the litigation dismissed the class complaint in the Zebley matter (United States Social Security Administration Office of Disability Adjudication and Review 2012).
The difficulty of litigating as a class in these childhood disability support cases on both sides of the border demonstrates that a reliance upon litigation as a tool to advance the rights of children with disabilities can be very challenging.
Erkulwater (2006) in her book Disability Rights and the American Social Safety Net comments that the Zebley case ‘was one of the few social security cases to have ever reached the Supreme Court’. She states that ‘… latecomers to disability litigation, the Supreme Court did not hear a social security case until 1968 and when it did it always sided with [the Social Security Administration]’.
There was something quite compelling to the US Supreme Court about the situation of lower-income severely disabled children who were left out of the scheme of benefits as then structured.
Regarding Brian Zebley, Doolittle (1998) explains that ‘the reason he was denied was because his conditions did not match [the Social Security Administration’s] listed adult or childhood impairments’.
On a review, the court held that in determining eligibility for benefits, the Social Security Administration had to allow for an individual functional assessment and the court required additional disabling conditions be added to the list such as Down syndrome, fetal alcohol syndrome and other serious hereditary, congenital, or acquired conditions (Doolittle 1998).
Erkulwater (2006) asserts that Brian Zebley had become ‘a casualty of the Reagan administration’s purge of the disability rolls at the age of 5’. I find this to be an interesting observation in light of the progressive steps President Reagan took in the Katie Beckett case, and forces one to confront the relationship between social assistance and disability overall. And the extent to which childhood disability supports can be non-partisan.
The very title of Doolittle’s (1998) article ‘Welfare reform: loss of supplemental security income (SSI) for children with disabilities’ makes the point well. And Erkulwater (2006) draws attention to an important pathway that exists between disability and also poverty in childhood. Litt (2004) & Doolittle (1998) explain that changes came about in disabled children’s SSI benefits in 1996 through ‘the Personal Responsibility and Work Opportunity Reconciliation Act, which is described as being ‘a retrenchment’ (Doolittle 1998) from advances made to the right to support children with impairments in the Zebley (1990) case. Doolitte (1998) and Litt (2004) draw attention to a most economically vulnerable sector of the disabled child population in the USA, namely those who are cared for by a single mother.
These authors also examined connections between poverty and childhood disability, supporting a position that disabled child rights cannot be advanced in without attending to poverty. They also examined the political context for such unhelpful changes to the support of children with disabilities in the States in the 1990s. Of interest here too is that Litt (2004) asserts that children below the low-income cut-off in the USA are twice as likely to report a limitation or impairment as those who are economically above the poverty line.
In ‘Profiling health and health related service for children with special health care needs with and without disabilities’ (Houtrow et al 2011) hypothesized ‘that children with special health care needs (CSHCN) with additional disabilities have more severe and less stable health conditions than other CSHCN and have more extensive health service needs, but have higher rates of unmet needs and less commonly receive care within a medical home than other CSHCN.’
They further proposed that ‘after controlling for health condition severity and socio-demographic features commonly associated with health care inequities, CSHCN with disabilities have increased odds of unmet service need’; indeed, their study found that both health and social challenges faced by children with special healthcare needs with disabilities were more pronounced (Houtrow et al 2011).
What their findings indicate overall is that in the USA, as elsewhere, more attention must be paid to the policy needs of children with severe conditions.
Doolittle DK (1998). Welfare reform: loss of supplemental security income (SSI) for children with disabilities. J Soc Pediatr Nurs 3: 33–44.
Erkulwater JL (2006) Disability Rights and the American Social Safety Net. Ithaca, NY: Cornell University Press.
Houtrow AJ, Okumura MJ, Hilton JF, Rehm RS (2011). Profiling health and health related services for children with special health care needs with and without disabilities. Academic Pediatr 11: 508–515. http://dx.do
Litt J (2004). Women’s carework in low-income households: the special case of children with attention deficit hyperactivity disorder. Gender Society 18: 625–644.
Rioux M (2003) On second thought: constructing knowledge, law, disability, and equality. In: Herr S, Gostin L, Koh H, editors. The Human Rights of Persons with Intellectual Disabilities: Different But Equal. London: Oxford University Press. pp. 287–317.
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.
Moore alleged that her employer (a company) had breached the Collective Agreement and the Human Rights Code when it refused to pay her for days missed while caring for her severely disabled daughter. Moore’s human rights complaint was for discrimination on the basis of family status. See Human Rights Code, RSO 1990, c H19, s5(1).
The company’s position was that because Moore had failed to work the regular, scheduled days preceding holidays, and because the reason for her absences (emergency child disability care) was unsatisfactory, she was not entitled to be paid for those days.
By way of explanation, Moore submitted that her husband had left that year and she was a sole-support parent. She had two daughters living with her in fact, a 17 year-old who was in high school and another daughter whose age is not provided, but who is noted to have severe medical disabilities. This daughter attended a school full-time in what is described as a “special program”.
In terms of care provisioning that she had arranged and managed, Cindy Moore informed the court that she’d hired a personal support worker (PSW) provided by her local Community Care Access Centre (CCAC) who attended every weekday morning Monday through Friday for 1.5 hours to assist her daughter in getting to school.
After school, a different PSW was employed privately by Moore, and paid for with external funding she received for her daughter from the province.
When this PSW was not available to work (the evidence showed she also worked at a nursing home and therefore had to juggle schedules), then Moore’s own mother provided the care. Moore’s 17-year-old daughter also provided care.
In short, five women provided care to the disabled girl. The father did not provide care, nor had he been involved with his disabled daughter since he left the family.
Turning to the workplace, Moore was a long-time employee who had worked for the company for twenty years. She missed work because, according to her evidence, the school had called her December 22, 2011 to advise her that her disabled daughter was vomiting mucus and blood.
Moore submitted that these signs signaled that her daughter needed heightened care to avoid hospitalization. On December 22, Moore asked both her mother and the PSW to care for her daughter, but neither one was available. She advised her employer of this situation in advance of her missed shifts, making calls to her workplace, where HR was informed. Moore cared for her sick disabled daughter including on December 24th. The business was closed for holidays from December 24 to January 2.
In response to her missed days, the company did not pay Moore for December 25th or 26th, 2011 nor January 1st, 2012 as a result of her having missed days of work during the vacation period. In the decision, it is noted that Moore had been absent 19% of the year rather than the 14% of the time allowed in the collective agreement.
She deserves recognition for the fact that she was able to manage complex care and full time work. That was not to be forthcoming in this venue, however.
The decision states that the company was understaffed during the holiday season due to employees taking pre-approved vacation leave. This was found by the adjudicator to be an “important consideration with respect to the company exercising its discretion to accept additional reasons for employees to be absent on qualifying days.”
Arbitrator Stout, having jurisdiction over the human rights claim as well, reviewed what he referred to as new and evolving case law on family status and concluded: “accepting the proposition that any employer action, which has a negative impact on a family or parental obligation, is prima facie discriminatory is untenable.”
He commented that attendance at work interferes with family responsibilities, but that “requiring work in exchange for compensation is a reasonable and bona fide requirement.” This statement ignored that Moore was working at home providing complex care to her ill disabled daughter without compensation, a feature that on the facts of this case, placed her livelihood in jeopardy.
Mr. Stout’s next opinion was that it is not the mother who was ill, but rather her disabled daughter, stating the mother was medically able to attend work, but did not do so because she did not have child care. He concluded that the reason for the mother’s absence was not linked to her inability to work, but due to her inability to obtain care for her disabled child. He stated the mother had “some control” over finding care for her disabled daughter, but added, “Unfortunately, no one was available…” More importantly, he stated, she had already exhausted her leave entitlements, including those of emergency leave
The result was that this arbitrator found there was no discrimination in response to her allegations that the company breached the collective agreement and the allegation that the company breached the Ontario Human Rights Code family status provision.
The Moore case presents a number of problems. These may be readily identified by those of us, who like Cindy Moore, have undertaken the impossible One is that respectfully, the arbitrator contradicts himself in his reasoning. The fact that Moore was vulnerable to having no childcare meant that she had no control over arranging her affairs to obtain assistance in providing for her disabled daughter, at least on these occasions.
He further stated that he saw Cindy Moore was in a difficult situation as a single mother with a severely disabled child, and was sympathetic “with her predicament” (author emphasis).
Then there was the normative opinion rendered by the Arbitrator. He stated that all children become foreseeably sick and that the difficult choice faced by Moore was no different than those that other parents face where there is a conflict between work and family obligations, adding
“That is why parents must plan for such situations and why emergency leave provisions exist.”
The arbitrator was focused on her leave entitlements, and could not envisage her as entitled beyond them. The comment made that the attendance policy of the company was “important” around the holidays with respect to the company exercising its discretion is an interesting one in light of the fact that the company chose to do so in the direction of punishing the mother of a child with a severe disability, by withholding pay.
The issue of what is the best approach for adjudicators to take in family status cases was addressed in an Ontario Bar Association employment law publication subsequent to the Siemen’s Milltronics decision. The author of it states that the test seen to be most suitable is whether there has been serious interference with a substantial parent/child obligation such that that protection under the provisions is engaged. There must be a “substantial obligation” with respect to the care requirement.
An important issue that remains unaddressed (to this day in fact) whether health care for a severely disabled child will fall easily under what the author calls an amalgamated approach. In such an approach, protections under family status are engaged where a ‘substantial obligation’ must be in the nature of a care requirement, and not the employee’s preference on how such care should be provided.
Arbitrator Stout in the Siemens Milltronics, case did not appreciate this distinction, and he is not alone.
Moreover, where a non-disabled child vomiting mucus and blood at school is framed in the workplace as an excusable parenting emergency, for Moore and others like her, it is a common concern.
And there’s The Rub.
In Siemens Milltronics, the arbitrator sympathized with the employer, “read in” Cindy Moore’s circumstances as comprising undue hardship to the employer and therefore beyond the extent to which accommodations to a parent legally must be made.
The implication to be drawn is that Cindy Moore failed to manage her circumstances well enough, and the message that this case sends is that employers can punish mothers with severely disabled children who miss work because of a risk of a child’s hospitalization and/or lack of disability care.
In fact, Moore’s daughter has cerebral palsy and hypomyelination, the latter described in the case as akin to Multiple Sclerosis. This care situation is far from what other parents typically plan for in relation to their work.
These kinds of care and the law issues are not only an issue in Canada. Consider the US case, Washington v Illinois Department of Revenue, 420 F 3d 658 662 (7th Cir 2005).
The facts of that case are that between 1984-2000 Chrissie Washington worked from 7 a.m.-3 p.m., hours that permitted her care for her child who had Down Syndrome.
Then, she was promoted, and some of her duties were changed. She complained however believing this change was racially motivated.
Then her work hours were changed to 9-5 in another position and she was told to reapply for flexible scheduling. She used her sick and vacation time from 3-5 to provide care to her child, but that option eventually ran out.
She brought forward legal complaints She contends in this suit under Title VII of the Civil Rights Act of 1964, Pub L No 88-352, 78 Stat 241, that the agency moved her to a 9-to-5 schedule in retaliation for her earlier charge of discrimination.
The parties consented to a magistrate hearing their dispute. The magistrate ruled that Washington could not show adverse employment action, because although her work hours had been changed, the duties and salary were the same. However, on appeal to the circuit court, it was held that employers may not exploit workers’ special vulnerability. The court held that “At this stage of the litigation a court must indulge all reasonable inferences in Washington’s favor”, the district court’s judgement below was reversed, and the case was remanded for trial, i.e., it was returned to the magistrate.
Meanwhile the caregiving mothers in these cases simply wanted to be able to support themselves.
Chrissie Washington’s case was discussed in the book Reshaping the Work-Family Debate: Why Men and Class Matter. By Joan C. Williams. Harvard University Press, 2010.
This Blog post concerns a now-ten year old Ontario social benefit case. It concerns a (then) young girl. Grace lives with a rare condition called Di George Syndrome, which is a complex congenital heart condition. Her family received funding at the purportedly maximum amount available under the Assistance for Children with Severe Disability Program (ACSD). This was approximately $410 a month, according to the case.
Grace’s funding was cut off when Grace’s father (John Wood) was informed by the Director of the ACSD Program that he earned too much money to continue to receive ACSD benefits. It was decided that his income exceeded the upper amount one can earn and still access disability support for one’s severely disabled child.
Mr. Wood appealed internally to the Ontario Ministry and he effectively lost his appeal. He was provided with a drug benefit card of $25 value. However he already had comprehensive drug coverage for his daughter Grace under his plan at work.
He then took the matter to the Ontario Social Benefit Tribunal to have a Hearing Officer there examine his case.
John Wood’s income was $91,924. However, it is notable that his family had spent $23,000 the prior year to care for Grace, which included air fare and accommodation for a life saving and rare surgery undertaken in Edmonton that could not be performed at Sick Kids Hospital. Grace’s mother stays home to care for Grace. They have another child.
Decision: The Ontario Social Benefits Tribunal Hearing Officer held that pursuant to s3(1) of the Act household income was but one factor to be considered by the Director, but so too were other expenses, and that $25 was not consistent with the purpose of the ACSD program.
The ACSD program had what the Tribunal member described as a “self-imposed” guideline and noted that it was not law, but rather, it was discretionary.
Moreover, the Hearing Officer found that the situation warranted the use of discretion so that the flights could be paid for. The Tribunal member further stated that in being bound by the law, the Director must consider all of the issues and she determined that the Wood family ought to receive $430 a month, the maximum amount under the program.
Comment: It has been a stated priority of that Ministry to support families of children with disabilities of all kinds. The issue is on provincial government radar. Yet, policy difficulties that speak to support issues persist. For example, based on my information, the last time quanta of support for eligible children and parents for the ACSD Program was adjusted for inflation was in 1998 and it was at 5.4%. That is over 20 years ago now.
For a child with health and care needs such as Grace, $430 is but a drop in the bucket of needed funding. I will continue with this important issue in other case discussions that will appear on my Blog.
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.