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Family Consequences of Children’s Disabilities

Family Consequences of Children’s Disabilities

Dennis Hogan
Michael E. Msall
Frances K. Goldscheider
Carrie L. Shandra
Roger C. Avery
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  • Book Info
    Family Consequences of Children’s Disabilities
    Book Description:

    The Americans with Disabilities Act (ADA) and other national policies are designed to ensure the greatest possible inclusion of people with disabilities in all aspects of American life. But as a matter of national policy we still place the lion’s share of responsibility for raising children with disabilities on their families. While this strategy largely works, sociologist Dennis Hogan maintains, the reality is that family financial security, the parents’ relationship, and the needs of other children in the home all can be stretched to the limit. In Family Consequences of Children’s Disabilities Hogan delves inside the experiences of these families and examines the financial and emotional costs of raising a child with a disability. The book examines the challenges families of children with disabilities encounter and how these challenges impact family life. The first comprehensive account of the families of children with disabilities, Family Consequences of Children’s Disabilities employs data culled from seven national surveys and interviews with twenty-four mothers of children with disabilities, asking them questions about their family life, social supports, and how other children in the home were faring. Not surprisingly, Hogan finds that couples who are together when their child is born have a higher likelihood of divorcing than other parents do. The potential for financial insecurity contributes to this anxiety, especially as many parents must strike a careful balance between employment and caregiving. Mothers are less likely to have paid employment, and the financial burden on single parents can be devastating. One-third of children with disabilities live in single-parent households, and nearly 30 percent of families raising a child with a disability live in poverty. Because of the high levels of stress these families incur, support networks are crucial. Grandparents are often a source of support. Siblings can also assist with personal care and, consequently, tend to develop more helpful attitudes, be more inclusive of others, and be more tolerant. But these siblings are at risk for their own health problems: they are three times more likely to experience poor health than children in homes where there is no child with a disability. Yet this book also shows that raising a child with a disability includes unexpected rewards—the families tend to be closer, and they engage in more shared activities such as games, television, and meals. Family Consequences of Children’s Disabilities offers access to a world many never see or prefer to ignore. The book provides vital information on effective treatment, rehabilitation, and enablement to medical professionals, educators, social workers, and lawmakers. This compelling book demonstrates that every mirror has two faces: raising a child with a disability can be difficult, but it can also offer expanded understanding.

    eISBN: 978-1-61044-773-7
    Subjects: Sociology

Table of Contents

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  1. Front Matter
    (pp. i-xii)
  2. Table of Contents
    (pp. xiii-xiv)
  3. About the Authors
    (pp. xv-xvi)
  4. Preface
    (pp. xvii-xx)
  5. Chapter 1 Families’ Experiences with Children’s Disabilities
    (pp. 1-14)

    More than one-eighth of all families with children in the United States include at least one child under age eighteen who has been diagnosed as having a disability. Nearly all of those children live with their families. Their disabilities range from mild (for example, asthma that limits participation in sports) to severe (such as cerebral palsy with extensive neurological complications). All told, 6.5 million American school-age children have a disability, and for 4.3 million of them, the disability is seriously limiting. This book is about how American families respond to the challenges of raising children with disabilities, and how these...

  6. Chapter 2 Methods to Study Family Consequences of Children’s Disabilities
    (pp. 15-30)

    In chapter 1, I briefly explained how I conceptualize children’s disabilities and indicated the types of information I use. Readers less interested in the methodological aspects of this study can simply go to chapter 3. Readers who are not interested in statistical details can also ignore textual reports of odds ratios (OR) and levels of statistical significance (p< .05), as well as other material presented in brackets. If readers ignore these statistical and methodological details, the material in the rest of the book is still accessible. I hope that potential readers of this book are not put off by the...

  7. Chapter 3 Supporting, Growing, and Dissolving the Family
    (pp. 31-47)

    Many parents live together when a child with a disability is born; many other parents do not live together when a child is born or at the time the child is diagnosed as having a disability. Parents are more likely to be married or living together in a stable relationship if both of them grew up in a two-parent family, have at least a high school education, are in their mid-twenties or older, and are white. Couples with these same traits are more likely to stay together. However, these parental traits have little impact on whether a child has a...

  8. Chapter 4 Family Life, Social Support, and Religious Activities
    (pp. 48-57)

    Families’ ability to raise children depends a great deal upon the social and economic resources that are available to them. On average, children who grow up with two parents have access to greater financial resources than children growing up in one-parent families. Family poverty increases food insecurity and reduces housing quality while indirectly affecting children by increasing family stress and constraining parental behavior (Engle and Black 2008). Parents with higher levels of education can usually avoid the harmful effects of poverty, as households containing one or two parents with at least a high school diploma are less likely to be...

  9. Chapter 5 Parents, Adolescent Children with Disabilities, and the Transition to Adulthood
    (pp. 58-73)

    All parents face the challenges of helping their children navigate adolescence and young adulthood. This is particularly difficult for parents raising children with disabilities, as parents may have to modify their expectations for their children’s participation in adult life. As Margaret, the mother of David (who has cerebral palsy with mobility limitations and learning disabilities), explained: “There were a lot of unknowns in the beginning.… Even now, will David ever be able to [finish high school and] live independently by himself? We don’t know. We would like to think he will. But we don’t know for sure.” Danielle, the mother...

  10. Chapter 6 The Lives of Brothers and Sisters
    (pp. 74-80)

    As seen in chapter 3, parents have a variety of options in deciding whether to have another child when one of their children already has a disability. Many parents whose first child is seriously disabled decide not to have another child because of the exceptional resource needs the family faces and their sense that it would not be fair to have another child who could not be parented with as much attention as he or she deserves. In cases where the disability of the child is not as seriously limiting, parents may decide to have another child in order to...

  11. Chapter 7 Parents’ Struggles for Disability Services
    (pp. 81-92)

    No study of the family consequences of children’s disabilities would be complete without attention to parents’ difficulties in negotiating and coordinating with service providers such as doctors, physical and occupational therapists, health care aides, teachers, counselors, and the panoply of other individuals who assist in the care of children with serious disabilities. These specialized services address medical conditions leading to disability and limitations in daily activities. Some children require medication and surgery to eliminate or alleviate disabling medical conditions, while others use medical devices and implants to treat medical conditions or to improve functional abilities. Still others may receive rehabilitation,...

  12. Chapter 8 Conclusions
    (pp. 93-100)

    Families of children with disabilities face a different set of challenges than do families whose children do not have disabilities. However, the lives of children with disabilities, their parents, and their siblings are not inferior. At a support group for parents of children with Down syndrome in 1995, anthropologist Rayna Rapp first heard a parable attributed to Emily Kingsley that metaphorically captures this truth:

    Imagine you have planned a vacation to Italy, to see the rose gardens of Florence. You are totally excited, you have read all the guidebooks, your suitcases are packed, and off you go. As the plane...

  13. Notes
    (pp. 101-102)
  14. References
    (pp. 103-106)
  15. Index
    (pp. 107-112)