Siblings of Disabled Have Their Own Troubles

News article

By: Gretchen Cook

Date: April 4, 2006

Source: Cook, Gretchen. "Siblings of Disabled Have Their Own Troubles." New York Times. (4 April 2006).

About the Author: Gretchen Cook writes on topics related to health and disabilities for the New York Times.

INTRODUCTION

Until the 1960s, most physically and developmentally disabled children were placed in institutions or segregated educationally in special schools or separate classrooms. Private schools for the disabled, such as the Perkins School for the Blind, were founded in the nineteenth century and continue to operate for children with physical and developmental handicaps. By the late 1960s, parents of disabled children fought for greater education and medical rights for their children; the 1975 Education for All Handicapped Children Act was a piece of federal legislation that provided sweeping education rights for such students.

As a result, more children with disabilities became part of the social and educational environment in neighborhood schools. By the late 1970s and early 1980s, a new educational theory for special education students—mainstreaming—sought to place special education students into regular classes for as much of the day as possible, to help students acclimate to the academic and social atmosphere of classrooms where students did not have disabilities. The siblings of students with disabilities, therefore, spent more time in contact with their disabled brothers and sisters, either at home or in school. In the 1980s, 1990s, and into the twenty-first century, more children were diagnosed with special needs than at any previous time in public education history. As diagnoses of autism spectrum disorders reached a rate of 1 in 166 in 2005, and as better detection and diagnosis of conditions such as dyslexia, attention deficit disorder, early-onset bipolar disorder, and other conditions led to greater numbers of children in special education, more than seven million children in the U.S. have come to be identified as the sibling of a disabled child.

Research on the attitudes and outcomes of siblings of disabled children is scant; because their numbers are growing, researchers and psychology professionals are beginning to examine the impact their siblings' disability has on these children. Siblings of disabled children are often expected by parents to be more mature, to handle more household tasks, and later in life to be the assumed caretakers for disabled siblings once the parents die or become too incapacitated to provide direct or indirect care to the child with a disability, while in the past a disabled brother or sister might have been placed in an institution or a halfway house. The following article notes the increasing trend and examines how siblings cope.

PRIMARY SOURCE

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SIGNIFICANCE

As of the year 2004, 8.6 percent of all children ages three through twenty-one in the United States were classified as being served by the Individuals with Disabilities Education Act (IDEA), the revised version of the 1975 Education for All Handicapped Children Act. Between 1994 and 2004, the rate of increase for children falling under the umbrella of IDEA was 9.25 percent; as these rates increase, the number of siblings of children with disabilities continues to increase as well.

As this article notes, siblings of children with disabilities face unique challenges. Some children express a secret wish for their own disability, to receive the extra attention their siblings receive, while others act out or play the role of perfect child, all while dealing with peer pressure regarding their sibling's status.

At the same time, research as of 2006 suggests that siblings of disabled children are emotionally well-adjusted, and in some research studies demonstrate more compassion, empathy, and appreciation of their own non-disabled status. While some studies show that the first year after diagnosis leads to some adjustment problems, siblings of disabled children demonstrate long-term emotional and psychological health in spite of—or perhaps because of—their experience in a family with a disabled child.

While researchers have studied the siblings of mentally ill persons for years, the siblings of disabled children represent a relatively new facet for research and study as disability in the childhood population—most notably developmental disabilities—have a greater impact on American educational and social institutions.

FURTHER RESOURCES

Books

Connors, Claire and Kirsten Stalker. The Experiences and Views of Disabled Children and their Siblings: Implications for Practice and Policy. London: Jessica Kingsley Publishers, 2003.

Growing Up With Disability, edited by Carol Robinson and Kirsten Stalker. London: Jessica Kingsley Publishers, 1998.

Mayer, Don. The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs. Bethesda, Md.: Woodbine House, 2005.

Periodicals

Epkins, C. "An Initial Look at Sibling Reports on Children's Behavior: Comparisons with Children's Self-reports and Relations with Siblings' Self-reports and Sibling Relationships." Journal of Abnormal Child Psychology 27 (October 1999): 371-381.

Muchnick, Jeanne. "Giving a Voice to Siblings of the Disabled." New York Times (19 March 2000).