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Shining A Light: Relatable Mother-Scholarship On Care

The author enjoying the sunrise in Eastern Ontario 2013 – Photo Credit Susan E. Murphy

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).

The sun shines through the storm – photo credit Cameron Crawford 2018

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).

Nota Bene:

If you are interested in sifting through another quite different compilation of dissertations in the area of disability, you can access one here, at the excellent UK journal, Disability and Society. https://www.tandfonline.com/doi/full/10.1080/09687599.2016.1277072

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.

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Untangling The Respite/Care Knot

What Is Respite, Exactly?

Today I am pondering the blurry edges of some care-categories. Palliative Care. Respite Care. Home Care. PICU Complex Care. And whether these are distinct categories.

In thinking about this issue I came across a nearly 12 year old CBC article from British Columbia. It’s a powerful tale of the lived experiences of a close family of three. The child in the family lived with a severe disability, at home, in the care of her mother and father. Her parents were interviewed by CBC about what had clearly become a care crisis.

“We’re trying to give her the best life, because she doesn’t have a long life to live. We are trying to enjoy her as best we can.” Kaitlyn’s father told the media this poignant fact in a 2008 interview with CBC, adding “there’s nothing we wouldn’t do to give her the best care she can have.” That interview (which is where the below photo is from) can be found here: https://www.cbc.ca/news/canada/british-columbia/b-c-cuts-respite-for-family-of-severely-disabled-child-1.737947

CBC Photo from article lined above (C) CBC see link above.

In this difficult interview, the two caregiving parents also spoke about their government-funded caregiver who came to help out with Kaitlyn’s care during the day, as well as the fact that they were usually left to provide for her complex medical care needs on their own at night.

Meanwhile both mother and father had full-time jobs in addition to their roles as caregiving parents. Suzanna worked during the day, while Jeff worked a 10 hour evening shift. He relayed that he slept from 2 am to 6 am at which point Suzanne would leave for work. This raises an issue tied to the respite vs care issue that I feel needs to be addressed, and that is what this post is about.

Who supports the caregivers?

Another point these caregiving parents make in this interview is that they both pay taxes but that they’re are not seeing their tax money directed towards people like them, namely folks who have medically complex children to care for at home. They pointed out they know that they are not alone in this regard.

When asked about this situation at the time that this article was written CBS reported that the CEO of Community Living B.C. “refused to talk specifically about the Pekrul case” but according to this CBC piece, the CEO stated that his “priority was to assist families with the most urgent needs.” Perhaps that needs to be fleshed out more in policy.

How is urgent defined for a start?

“Obviously we are not providing services to everyone,” said Rick Mowles the CEO of Community Living BC . “But you know, we like to think that we are dealing with all situations on an individual basis” the CBC article quoted. “Most parents — when it comes to health and safety issues and crisis issues — those families are all getting the respite they need,” he said.

Is this true, though? And what do we mean by ‘community living’ in the context of a young person with medically complex conditions who require 24/7 care?

Support policy is confusing. Do parents like the Pekruls want Respite or do they want Care? Or do they need both? For many (mostly women) who’ve spent years providing complex care, it is not “respite” that is the main issue (although respite is also clearly fraught in provincial public policy) but rather care programs that are tailored to meet the specific care needs of children and age of majority “children” who need it.

There is no generic medically complex and/or technology dependent child. Its an additional fact that needs attending to.

The matter of respite vs care needs to be closely examined in provincial public policy. For example, what is the enhanced “respite” that is offered to (primarily) mothers in Ontario, for example? It is oftentimes ICU level nursing care. Is that what respite means? Can it mean that however if it also means the kind of relief that was provided under the old Special Services at Home Program that I was thankfully able to access in the 1990’s?

We need to untangle the respite-care knot. We have needed to do so since this new form of childhood – namely childhoods that are being lived with medical complexity and technology dependence – came into being.

Mothers want to mother, and we need health care workers to provide the health care. We feel that our children have a right to that. As do we. For that to take place mothers with severely disabled children in their care need status recognition regarding what it is that we do and what it is that needs to be done by others.

And we badly need to be heard on this point.