Crushed & Haunted: Mothers, Complex Care & the State

By Sheila Jennings and Patricia McKeever (c)

authorized use

Introduction

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 maternal complexity 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.

The Authors in 2019

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 v Sutherland 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 Vivian v 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.

References

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.

Council of Canadians with Disabilities. (1996). Charles Blais, 6, murdered by mother. < http://www.ccdonline.ca/en/humanrights/endoflife/latimer/1996/11c>.

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.

Christie, J. (2014, April 25). Struggling single mother, 40, left suicide note saying she could no longer cope caring for severely autistic son, 16, before killing him and then herself. Daily Mail. < http://www.dailymail.co.uk/news/article-2613443/Struggling-single-mother-40-left-suicide-note-saying-no-longer-cope-caring-severely-autistic-son-16-killing-herself.html >.

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).

Ferrari, N. [nd] on LBC Digital Radio. Online: Yourlisten <http://yourlisten.com/Danno/jane-raca-on-lbc>.

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 and the 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.

Home, A. (2002). Challenging hidden oppression: Mothers caring for children with disabilities. Critical Social Work, 3(1). <http://www1.uwindsor.ca/criticalsocialwork/challenging-hidden-oppression-mothers-caring-for-children-with-disabilities>.

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.), [1999] 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.

Petrenchik, T. M. (2008). Childhood disability in the context of poverty: A discussion paper prepared for the Ontario Ministry of Children and Youth Service. Hamilton, ON: CanChild Centre for Childhood Disability Research. <http://www.canchild.ca/en/ourresearch/resources/ChildhoodDisabilityintheContextofPoverty_CanChild.pdf>.

Prince, M. J. (2002). The governance of children with disabilities and their families: Charting the public-sector regime. Canadian Public Administration, 45(3), 389-409.

Prince, M. J. (2004). Canadian disability policy: Still a hit and miss affair. The Canadian Journal of Sociology, 29(1), 59-82.

Raca, J. (2013). (Written Submissions to Parliament.) http://standingupforjames.co.uk/25501.html. https://publications.parliament.uk/pa/cm201213/cmselect/cmeduc/writev/631/jane.pdf.

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.

Representative of Children and Youth of British Columbia.(2011). Isolated and invisible: When children with special needs are seen but not seen. <https://www.rcybc.ca/sites/default/files/documents/pdf/reports_publications/isolated_and_invisible.pdf>.

Robinson Inquest. (2015, October 3). Province of British Columbia. Verdict at Coroner’s Inquest Angie Elsie Robinson. Ministry of Justice.

Rosen Cohen, L. (2014, May 5). Crushing the caregivers. The National Post.

R v Tania Clarence (2014). Crown Court, United Kingdom. Sentencing remarks of Justice Sweeney.

Russell, J. (2017, August 6). Alone and untrained, a mother becomes a nurse for her disabled daughter. Boston Globe. <https://www.bostonglobe.com/metro/2017/08/05/caring-for-severely-disabled-daughter-solitary-vigil/akNGpxmEJcncheNufEuRNK/story.html>.

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.

Severino, S. M. (2016, March 7). Do we have a nurse coming? Families worry shortage puts kids at risk. Global News. http://globalnews.ca/news/2563003/do-we-have-a-nurse-coming-families-worry-shortage-puts-kids-at-risk/

Schnurr, J. (2013, April 30). Mother of severely autistic teenager leaves son at government office.  CTV News Ottawa.

Simmons, H. G. (1982). From asylum to welfare. Ontario, Canada: National Institute on Mental Retardation.

Stevens, C. (2016, March 7). Do we have a nurse coming? Families worry shortage puts disabled kids at risk. Global News.

Trumpener, B. (2015, Oct 1). Murder suicide inquest: Angie Robinson faced terrible choice. CBC.ca. http://www.cbc.ca/news/canada/british-columbia/murder-suicide-angie-robinson-robbie-robinson-1.3252744>.

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

Williston, W. B. (1971). Present arrangements for the care and supervision of mentally retarded persons in Ontario. A Report to the Honorable A. B. R. Lawrence, M.C., Q.C. Minister of Health. Toronto: Ontario Department of Health. <http://www.mcss.gov.on.ca/en/dshistory/legislation/1970s.aspx>.

Weeks, C. (2006, November 22). Moms of sick kids more likely to report being ill. Victoria Times Colonist.

Yantzi, N. M., & Rosenberg, M. W. (2008). The contested meanings of home for women caring for children with long-term needs in Canada. Gender, Place & Culture, 15(3), 301-305.

Young, V. (2017, May 16). Parents of kids with special needs are making a huge, secret social contribution. The Slate.com

The File of Kristine Gravel- McKeague & her baby daughter Pénélope Ottawa 2009

I have to say that my “Slow Blog” is beginning to look like a fast one!

This, like my second Blog post were examples of cases that I presented at a talk I gave in 2011 at The School of Nursing at York University https://nursing.info.yorku.ca/ entitled Making the Link: Public Policy and Mothers of Children with Disabilities in Canada (pictured here on the right after I had presented this talk (with Dr. Nazilla Khanlou).

Truth be told I’m purloining my own earlier work!

To provide a bit of background about Kristine whose photo appears above, she’s a married Mum & has a supportive spouse. When Pénelope came along Kristine had a child already. She was therefore an experienced mother.

Also note worthy in the context of this Blog Post, Kristine holds a degree in Sociology and Childhood Studies from Roehampton University in England. She’s a family support worker at a major community service centre. She had studied infant massage.

What more training might you need for motherhood you ask?

And indeed, Kristine believed that with her professional skills, her specialized education & her solid social support system, and her deep love of Pénélope that she could cope with being a complex care mother. She found in her case that was not so however.

When she sought state assistance for care and support for Pénélope she came up against some controversial provincial care policy.

Kristine had asked the province (the then Ontario Ministry of Community and Social Services) for a placement for Penelope in a care centre where she, Kristine, would continue as Pénélope’s Mum, making all decisions for her daughter’s care. This became thorny and the care facility stated they needed custody to be able to make medical decisions for Pénélope since the baby would be in their care. Kristine was advised that she would have to enter into a legal process and relinquish custody of her daughter to the Province in exchange for the care and services they both badly required. Moreover, as Kristine was to learn, this loss of custody would legally be deemed to be available as a result of the legal abandonment of Pénélope by her parents under the child welfare provisions.

Thus, state wardship was offered in lieu of voluntary care. This is a curious situation since state care would not be in the best interests of Penėlopė & accessing it this way surely engages Kristine’s constitutional rights under The Canadian Charter of Rights and Freedoms. It was a lose-lose for mother & child.A bigger conversation than this post allows here.

As well, the state wardship option was not designed to support this mother’s mental health, and in fact this approach to care has had, and continues to have, just the opposite effect on women’s mental health.

Indeed this very thing was claimed in a lawsuit brought against Ontario by another mother, Anne Larcade, in an Ontario Court in 2002. I will Blog about the 2006 Ontario Court of Appeal decision in the Larcade case another day. For now suffice it to say that Anne Larcade, in both a Maclean’s Magazine interview and also in The Star online, where asked Ontario “Where’s The Humanity?” That was many years ago now in solid piece of journalism by Tanya Talaga. It is a questions mother’s in such disputes continue to ask across Canada. See https://www.thestar.com/news/ontario/2009/07/23/wheres_ontarios_humanity_mom_asks.html

Interested in that now? You can look at the article Appeal Court Overturns Disabled Children’s Lawsuit by Karen Howlett in the Globe & Mail from November 26, 2006. https://www.theglobeandmail.com/news/national/appeal-court-overturns-disabled-childrens-suit/article971953/

Anne was a single working mother of two. She was not in a minority as a single caregiving mother in North America. Most children with disabilities are being raised by single mothers, as disability rights scholar Levine showed in 2008).

Moreover, the Literature tells us that among employed married middle aged Anglophone parents of children with disabilities with diverse diagnoses 42% of parents demonstrated symptoms of psychiatric distress (Thurston, et. al, 2011). The solution for mental and emotional distress in Caregiving Mothers is not child loss. It is child support.

I note that both mothers, Anne and Kristine, ultimately obtained care in Ontario, without child loss, after each entered into a dispute with the province and each presumable entered into negotiations for care with them as well. Not all mother’s are capable of that. What about them?

The above photo of Kristine & Pénelopé was featured in Parents of Disabled Kids Face Agonizing Choices by Author & Journalist Tanya Talaga in The Star at https://www.thestar.com/life/health_wellness/2009/06/24/parents_of_disabled_kids_face_agonizing_choices.html

Wood v Ontario (Director of Children with Severe Disabilities) (2009), Decision 0908-07140 (OSBT)

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.

More on this Blog post can be found here, where the photo of Grace is also from: Canadian Journalist and Author Tanya Talaga. The Star July 30 2009 https://www.thestar.com/life/health_wellness/2009/07/30/end_of_benefits_for_disabled_girl_perplexes_dad.html

To Be Negligent Or Not To Be Negligent? That Is The Question.

Featured

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), [1999] 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 duty of 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 Dobson really 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.