Public Policy Issues
Policies Affecting Fathers of Children with Special Needs
By: Donna S. Lero
This article, which examines policies and practices affecting fathers of children with special needs, is a chapter in FIRA's Inventory of Policies and Policy Areas Influencing Father Involvement.
An area of increasing interest among researchers and policy makers in recent years is the changing role of fathers and the explicit desire to support father involvement as a way to enhance children's health and well-being. Although scholarly interest in fatherhood emerged in the early 1970s and 80s, the bulk of studies and policy work on fatherhood is very recent - much of it dating from the mid-1990s onwards.
This article is a chapter in the recently released Inventory of Policies and Policy Areas Influencing Father Involvement which is a collaborative document which has benefited from the ideas and suggestions of others. It is supported by funding from the Social Sciences and Humanities Research Council (SSHRC - CURA). For a full copy of this document see our home page.
Fathers of Children with Special Needs by Donna S. Lero
Specific Issues and Policies
The term “children with special needs” refers both to children with physical, intellectual or developmental disabilities and to those with significant long-term health conditions that limit their participation in normal age-appropriate activities. As described by the Organization for Economic Cooperation and Development (OECD), these children (and their parents) typically require additional public and/or private resources and supports beyond those normally required to support healthy child development. More specific definitions may be used for the purposes of estimating the prevalence of children with disabilities and for determining children’s/parents’ eligibility for a variety of supports and services. Children’s conditions vary in terms of aetiology, severity, and age of onset; conditions may be acute and life-threatening or chronic, and a disease or condition may be progressive, non-progressive, or episodic in nature. Certain conditions are visible and stigmatizing, while others — including learning disabilities and mental health problems — are “invisible”, yet can still strongly affect children’s development and family functioning.
Because of the difficulties involved in definition and the fact that many conditions are only manifest once children are of school age, prevalence estimates are highly variable. Current “official” estimates of the number of children with special needs, based on the 2001 Canadian Survey of Participation and Activity Limitations (PALS) suggest that approximately 1.6% of children 0-4 years of age and 4% of children 5-14 years have a disability, with 1.7% of children in the latter age group classified as having severe or very severe disabilities (Office for Disability Issues, 2003). Other estimates range from 5 to 20%. Despite the difficulties involved in obtaining accurate numbers, two trends are notable: (1) The number of children with special needs is increasing, in large part because of medical and technical advances that not only allow more children to survive, but also extend the number of years children live who have significant disabilities, impairments or serious medical conditions; and (2) Since the 1970s our society has moved away from institutionalization or segregation of people with disabilities to one in which most children with disabilities grow up in their families and communities. This shift has not been accompanied by a commensurate development in the resources required to ensure the full inclusion of children and youth with disabilities in their communities or sufficient resources to support parents who are raising these children, often in very trying circumstances (Valentine, 2001).
While improvements are being made in a number of areas, Valentine’s portrait of this policy domain and approach to service delivery as “complex, fragmented, uncoordinated and often underfunded” suggests that many children with disabilities still fall through the cracks and that many parents face frustration and disappointment in trying to access supports and services that would benefit their child and reduce parenting stress. The therapies, inclusive child care, appropriate education, respite and home care (for example) that are available to parents and children are highly variable and are often not sufficient.
This contextual information is important to appreciate, since it frames the lived experiences of fathers and mothers who often rely mostly on themselves and extended family members for day to day intensive caregiving and for support during crises. As well, parents of children with special needs often have to spend considerable time and energy advocating for their children and seeking out, organizing, and maintaining supports for themselves and their child. Fathers and mothers, as individuals and in couples, face complex decisions about how to organize their time and energy to meet family needs. For an increasing number of parents, these roles extend well beyond the boundaries of the traditional childhood years, and include the challenges of addressing the economic, social and physical needs of their adult dependent children, and finding ways to support their optimal independence and inclusion in the community. Parents, professionals and inclusion advocates increasingly articulate the imperative of addressing the needs of children and adults with disabilities as a matter of rights, rather than charity.
Specific Issues and Policies Regarding Fathers of Children with Special Needs
Until quite recently, the particular needs, experiences and concerns of fathers of children with special needs have been absent from both the research and practice literature. More recent studies (Brotherson & Dollahite, 1997; McNeill, 2004) are challenging an earlier deficit perspective in which fathers were portrayed as distant figures in the family milieu with one that is more sensitive to fathers’ concerns and ways of coping and that demonstrates and supports fathers’ involvement and resiliency. Fathers are not solely affected in their role of father, but are also influenced as part of parental and family systems by the additional responsibilities and more limited resources associated with having a child with special needs.
Parents of children with special needs face a number of challenges. Some of them (such as balancing work and family responsibilities) are similar to those experienced in most families. Some challenges pertain to ensuring that their child has access and appropriate support to participate in generic community programs (such as child care, education and recreation); while other challenges are more unique. The latter include learning or adapting creative ways to care for a child with special needs or a medical condition, affording and/or accessing specialized inhome services and therapies, and learning how to navigate complex systems to obtain information or support and work effectively with medical personnel and other professionals. A common concern is how mothers and fathers respond to the variety of stresses they experience as individuals, as a couple, and, potentially, as parents who may also have other children in the home. While there are examples of couples and families who develop closer and stronger ties and fathers who exemplify considerable personal growth, there is also ample research to show that the stresses experienced by parents who are primary caregivers of seriously ill or disabled children can have adverse affects on their physical health, mental health, and on the couple relationship (Brehault et. al., 2004; Chesler & Parry, 2001; Quittner et al, 1998).
As described by Valentine (2001), policies related to children with special needs and their parents are at the intersection of family/child policy and disability policy. Neither area has been particularly cognizant and responsive to the needs of children with disabilities and their parents, although there have been some new initiatives in recent years, especially for children 0-6 years of age. Moreover, policies that relate to financial support for parents of children with special needs and access to various services can involve all three levels of government and various ministries and departments at the provincial/territorial level, including health, social services, education, and finance. Because of this complexity and a lack of mechanisms to insure equitable access to effective programs across Canada, current policies and programs form an inconsistent patchwork that may or may not provide the supports and opportunities that are so important to children with disabilities and their families. Moreover, promising initiatives in this area appear to be highly vulnerable to changes in political leadership and priorities. The following is a partial catalogue of the major policies and programs that support parents of children with special needs and, hence, affect fathers directly and indirectly.
Specific policies that influence fathers of children with special needs include the following:
$ The federal government has embraced a rights-based approach, in keeping with the Canadian Charter of Rights and Freedoms, and as evident in documents such as A Canada Fit for Children and the 2004 Speech from the Throne, in which the government stated its commitment to be a “steadfast advocate of inclusion.” In several instances, parents have used Charter challenges and other means to press governments to address their children’s needs for treatments or services.
$ Federal tax deductions and credits that are pertinent to families with children with disabilities include the Disability Tax Credit, which is applicable to children who have a “severe or prolonged mental or physical impairment” or who are blind or “markedly restricted in their ability to perform one or more basic activities of daily living” or “require life-sustaining therapy at least three times per week for at least 14 hours per week.” Other deductions and non-refundable credits include those that may be claimed for disability supports, medical expenses, child care, and attendant expenses (Canada Revenue Agency, 2005). Several of these tax measures were expanded in the 2004 and 2005 federal budgets, and additional funding has been earmarked for Aboriginal children with disabilities to improve special education for First Nations children on reserve.
$ The Child Disability Benefit (CDB) was introduced in 2004 and is administered in tandem with the National Child Benefit. It consists of “a tax-free benefit of up to $2,000 per year for low and modest-income families who care for a child under age 18 with a severe and prolonged mental or physical impairment” (the same requirement that applies to the federal Disability Tax Credit). The amount of the CDB is reduced as family net income increases above a certain threshold that is determined by the number of children in the family - currently $35,621 for a family with two children.
$ Provincial/Territorial income support and special services either provide financial support to families who must incur extraordinary expenses or furnish the service directly at a subsidized rate to families that qualify. The range includes programs that provide a monthly allowance to parents of children with severe impairments (such as Québec’s Allowance for Handicapped Children), to those such as Ontario’s Assistive Devices Program that reimburses suppliers for 75% of the cost of prosthetic devices and specialized aids, to programs such as those in Alberta and British Columbia that provide a wide range of medical benefits and family support services, including referrals, respite care, and health-related supports and specialized services. Each program has specific eligibility criteria based on the child’s needs and most are income tested. (See Canadian Policy Research Network’s Kids Canada Policy Digest.) The provinces also provide additional financial assistance and social support to individuals who agree to foster and/or adopt children with special needs.
$ Each province and many municipalities provide a range of child care, education and recreation services. Many jurisdictions require that children’s programs and parenting resource centres be inclusive. Funds are allocated to schools or school boards to support inclusion and special education programs, and there have been some efforts to better resource child care programs to enable them to more effectively include children with special needs. Much of this work, however, is substantially underfunded. It should also be noted that some families may benefit from assistance from charitable organizations, faith groups, and private companies’ charitable efforts on behalf of children with special needs.
$ Parental leave, family leave and compassionate care leave and benefits are utilized by parents of children with disabilities or significant health problems who need to take time from work to provide care and support. In 2000, parental leave and benefit legislation was reformed to provide parents with more time to care for a newborn or newly adopted child (an increase from 10 to 35 weeks of parental benefits) and to promote greater use of parental leave by fathers. As of January 2004 most provinces introduced legislation to allow employees up to 8 weeks of job-protected leave, matched by 6 weeks of EI benefits for those who qualify, in circumstances when an employee is required to provide care or support for a family member who has a serious medical condition including a significant risk of death within 26 weeks. These new policies have provided some support for parents of children with special needs under specific circumstances; however, neither policy is flexible enough to meet the needs of many parents of children with special needs for time off to take their child to medical or therapeutic appointments or for educational consultations, or for a period of time when their child is ill or hospitalized for other than life threatening situations. Family leave is available in only some provinces, is often unpaid, and may be restricted based on length of employment or size of firm (See Section C - Work and Family Policies). Consequently fathers’ opportunity to take job protected, paid or unpaid leave to provide care or to participate in medical appointments or consultations depend on public policies, workplace policies and practices, and personal and couple decisions about cash and care priorities.
Significance and Potential Influences on Fathers
Parents of children with special needs often face serious financial challenges for two reasons. The first is the likelihood that family income will be lower if one or both parents must reduce their work hours, forego a higher paying job, or leave the labour force entirely to care for their child with special needs. The second contributor to financial stress is that typically there are many additional expenses involved in parenting a child with special needs. These additional expenses can include the cost of home renovations and additional household heating, medications, special diets, purchase and maintenance of assistive or prosthetic devices, tutoring, respite care, and the costs of transportation to and from medical appointments and therapies, especially if they are some distance away. Single parents with a child with a serious disability may have little recourse other than to rely on social assistance (Roeher Institute, 2000).
Parents of children with special needs, even more than other parents, benefit from workplaces that are supportive of their role as a parent, including having a supervisor who is supportive and the opportunity for some flexibility in work scheduling. Fathers who are sole or primary earners, especially those who have low earnings and work long hours with limited or no flexibility, are less likely to be involved in direct caregiving. In such circumstances fathers may feel conflicted and guilty, even though they are providing for their family, and mothers can easily become overwhelmed and depressed when caregiving is not shared with others. One strategy dual-earner couples with children with special needs seem to employ more often is to off-shift work hours so that both parents can be employed and one parent is always available for their child. This strategy, while adaptive to some degree, can also incur additional costs on the marriage, on parents’ health, and on family life (Irwin & Lero, 1997).
Parenting a child with special needs typically requires increased parental responsibility in the form of the physical and emotional demands of caregiving, and often requires additional time investments in activities of daily living, transportation, planning for and arranging services and supports, educating one’s child, and attending medical and therapeutic appointments. Child care and recreational programs may expect parents to be on call or nearby for assistance. In cases where a child has ongoing medical and health needs, parenting may extend to tube feeding, ventilator assistance, medication, and therapeutic regimens. It can be difficult to share these responsibilities with others and/or to find and maintain in-home assistance. Without external support, parents of children with special needs may experience a life that is mostly focused around their child’s needs, with little or no recreation, respite, or opportunity to participate in their community. In such cases, parents’ physical and mental health can be compromised and parents may experience increased conflict and parenting stress, as well as depression — particularly when one parent (often the mother) does the bulk of caregiving and the other parent (often the father) is engaged in longer work hours (Brehault et al., 2004; Quittner et al, 1998). Because the couple relationship is so critical for both partners, high rates of depression and conflict can lead to longer term difficulties, including what has appeared in some studies as higher rates of divorce among families with children with disabilities.
While school boards across Canada have a responsibility to provide an appropriate form of education and include children with special needs, parents have still faced considerable difficulty in ensuring that their child has the resources and supports he/she needs. Parents have also experienced difficulty finding and affording suitable child care, particularly when staff have limited training and experience and governments do not commit sufficient funds and human resources to ensure that children with special needs will have positive, development-enhancing experiences in high quality child care programs. When children lack opportunities to benefit from community programs and to interact with peers, both they and their parents are marginalized and excluded.
According to PALS data, most children who require help with everyday activities, including personal care, receive that help from their parents and sometimes from extended family, friends and neighbours. Among parents of children with severe to very severe disabilities who said they needed help with housework, family responsibilities, and time off for personal activities, 29% received some help but needed more, and 40% received no external assistance. The main reasons parents gave for unmet needs were cost and lack of available services and supports. In addition, slightly more than one third of parents who needed such assistance did not know where to look for help. Parents were also asked about the need for specialized aids and services, including hearing aids, wheelchairs, voice amplifiers, sign language interpreters and tutors. Half of children with disabilities who need specialized aids did not have all the aids they required (including one third of children with severe or very severe disabilities). Again, cost was a major factor (cited by 55% of parents); 21% of parents did not know where to obtain such aids and in 17% of cases, they were not able to find such aids locally. Research undertaken by the Centre of Excellence for Children and Adolescents with Special Needs affirms that these difficulties occur to a greater extent among families with children with special needs living in rural and northern Canada. In many of these communities high proportions of First Nations and Francophone families with children with special needs lack access to the supports, services and therapies their children need, adding to the stresses fathers and mothers experience (Varga-Toth, 2006).
While there is a strong movement to transform current institutional practices in health and social service systems to be family-centred services that work in partnership with parents and enable both mothers and fathers to be fully informed participants in their child’s care and treatment, there are also examples of parents who have other experiences. Health services systems have been criticized as needing such reform, rather than perpetuating gendered service approaches that mostly involve mothers as caregivers and exclude fathers as key participants and partners in their child’s care. Family-centred practices have been shown to be more satisfactory to parents and to reduce some of the stress they experience (King, King, Rosenbaum & Goffin, 1999).
As is true of many other clusters or subpopulations of fathers, the amount and depth of research on fathers of children with special needs is limited, which, in turn, limits our understanding of the ways various factors affect fathers’ involvement and adaptations in this circumstance. Earlier studies compared mothers’ and fathers’ reactions and levels of distress, and generally painted a negative picture of fathers who often seemed distant and more concerned with their children’s capacities and needs in the long-term, while mothers took on major caretaking roles. More informative, qualitative research is emerging, however, that allows fathers’ voices to be heard, provides insight into fathers’ needs and responses, and demonstrates some fathers’ resilience and active involvement in extremely stressful circumstances. (See Chesler & Parry, 2001; Dollahite, 2004; and McNeill, 2004.)
Along with these qualitative studies is growing awareness of the fact that fathers’ expectations and behaviour in parenting a child with special needs, in addition to being influenced by individual aspects of his personality and life circumstances, are shaped by a variety of factors, including the extent to which mothers, workplaces, and institutional practices in health and social services can and do operate either to reinforce and support active paternal involvement or to perpetuate gendered responses and a more distant role for fathers of children with special needs.
Chesler and Parry have described the major stresses fathers of children with cancer face as encompassing i) informational stress - resulting from uncertainty about the cause and possible consequences of a child’s serious illness; ii) practical stress- including the need to find ways to manage work, family and household responsibilities on both a daily and continuing basis; iii) emotional stress- including feelings of powerless and guilt; iv) interpersonal or social stress including stress related to relationships with other family members (a spouse or partner, other children in the family) and relationships with co-workers and friends; and v) existential or spiritual stress- as fathers try to “make sense” or derive some meaning out of their experience, come to terms with their religious or spiritual beliefs, and attempt to reorder priorities.
Both Chesler and Parry and McNeill, who interviewed fathers of children with severe juvenile rheumatoid arthritis, found that these fathers’ experiences must be understood, not only on a personal level, but in the context of their relationship with their spouse/partner, and in the context of gendered norms and expectations. Consequently, many fathers, while very distressed and concerned about their child, described their need to “be strong”, “to be a rock on which others can depend”, and to uphold their role as anchor and economic provider. Being “strong and silent” could result in these fathers not expressing their feelings openly or admitting their vulnerability - a coping style that could carry its own price in denying these fathers the support they need, as well as suggesting a lack of involvement and support for their wife. In such cases, the friction generated by adopting highly differentiated roles and not sharing feelings could easily contribute to mothers feeling overwhelmed, resentful and depressed and fathers feeling isolated, conflicted, and guilty. Gendered pressures and norms in the workplace, in support systems, and in health care institutions that often reinforce the expectation that mothers are sole or primary caregivers can marginalize fathers, rather than support them to be active partners in their child’s care. These features of the external environment shape patterns that limit the availability of support to both mothers and fathers, complicating an already stressful circumstance. In these situations, fathers who are reluctant or unsure of how to provide care and support for their child can easily find refuge in work and drift further from their partner and child.
Interestingly, the qualitative research referred to earlier is also providing other examples of fathers who do prioritize care over work and derive much meaning from the intimate relationship they have with their child. Brotherson & Dollahite (1997) discuss the “generative ingenuity” evident among fathers of children with special needs who are strongly committed to their family and their children as a first priority. Some fathers have identified the source of change in their priorities as the support they received from their spouse or from their own father, while a smaller number have credited psychological counselling or father-focused support groups as important change agents. In these circumstances, a child’s illness can have a transformative impact on some fathers.
Gaps, Critical Questions and Concerns
To date, a limited number of studies have been published that explore the ways gendered norms, expectations, relationships, and institutional practices affect fathers’ constructions of their roles and needs in families with a child who has a disability or serious health condition. These studies, however, are consistent in identifying the important influences that can limit or expand fathers’ opportunities to be involved parents and caregivers. In addition, a model of family-centred service/practice has been developed which holds considerable promise for changing a pattern that has tended to consciously or inadvertently exclude fathers.
An examination of public policies in this area has not been subjected to a rigorous gender analysis. Yet in many families when children require considerably more intensive care, as is the case with children with disabilities, mothers are typically expected to forego employment and take on the bulk of caregiving responsibilities. This has implications for both fathers and mothers, at home and at work. Public policies and institutional practices that fail to adequately support families of children with special needs and that limit fathers’ and mothers’ opportunities to combine work and caregiving can place children, mothers, and fathers at risk. The complexity inherent in this particular policy area and the challenges of working towards policy coherence are formidable and international comparisons and experimental initiatives to test alternative models are few. Best practice examples of workplace supports (such as the Canadian Union of Postal Workers’ Special Needs Project Initiatives) and innovations in therapeutic settings and community programming would also be helpful.
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