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IMPACT

Supporting Family Life for Children with Disabilities: What We Know and Don't Know

By Nancy Rosenau

The simple truth that young children need a close relationship with a nurturing parent for physical and emotional well-being has been known intuitively for as long as humankind has organized itself in families. It has been affirmed by child development experts and researchers. It was theorized by John Bowlby in the 1950s, subsequently studied under the term “attachment,” and is now supported by an enormous body of empirical evidence (Cassidy & Shaver, 1999; Carlson, Sampson & Sroufe, 2003). The best description I’ve seen of this necessary relationship is Stanley Greenspan’s (1997):

Every child needs a safe, secure environment that includes one stable, predictable, comforting, and protective relationship with an adult, not necessarily a biological parent, who has made a long-term personal commitment to the child’s daily welfare and who has the means, time, and personal qualities needed to carry it out. (p. 264)

Children with Disabilities and Family Disruption: What’s Known, Unknown

In the child welfare system, the need of children for family has been built into policy and mandated by federal legislation since 1980 under the term “permanency planning.” Permanency planning is a set of goal-directed, time-sensitive activities to create conditions to allow the safe resumption of care by a birth family after removal, or permanent placement with another family when return is not possible. Despite the importance attributed to a nurturing parent-child relationship, children with disabilities have been differentially assured this singularly important developmental imperative. Several very thorough, must-read publications on children with disabilities summarize the now well-established facts (Bruhn, 2003; Marge, 2003; Rosenberg & Robinson, 2004):

In short, too many children with disabilities get into care, too few get out, and too often they’re in the wrong place while there. What contributes to this state of affairs? In a number of senses, we “don’t know.”

We don’t know in the sense of having factual information. Despite recognizing the prevalence of children with disabilities in child welfare systems, we don’t know who they are, where they live, or what their experiences are. Studies widely report children with disabilities are over-represented in the child welfare system. Estimates range from 14% to 64% depending on methodology and definitions, but the data is hard to interpret. Take the following examples identified from data in a national reporting system (see Bruhn, 2003). Federally mandated data collection identified only 11% of children in care as having a developmental or medical condition, a proportion far lower than would be expected given prevalence in the general population, much less the higher incidence of disability caused by abuse or neglect. In 1999, Washington state reported no children in foster care had disabilities and Florida reported 21 of 34,254; that same year North Dakota reported 46.7% of children in foster care had disabilities. Either children with disabilities were not identified in Washington or Florida, or they weren’t living in foster care. Either children in North Dakota are maltreated at enormous rates or North Dakota is reporting children that other states don’t count as having disabilities. If we don’t know who has and who doesn’t have a disability and where they are, how can we be sure we’re providing them with what they need?

We also don’t know in the sense of having awareness. We don’t distinguish to what extent behaviors of children with disabilities are consequences of maltreatment rather than intrinsic to their impairment. Knowing is complicated by children’s inability to communicate and by inadequate evaluations that have difficulty distinguishing underlying conditions. The behavioral consequences of maltreatment are increasingly understood to include aggression, poor sense of personal safety, inappropriate sexual behavior, self-abuse, poor hygiene, extreme withdrawal, and running away. The behavioral consequences of early loss of an attachment figure are also increasingly understood to include delayed speech and language development, sensory integration difficulties, behavioral stereotypies, and inattention/hyperactivity (Zeanah, 2000). The list of behavioral consequences of maltreatment and attachment loss is suspiciously similar to the descriptions of many children with disabilities. When children with disabilities are described as aggressive, impulsive, withdrawn, overly friendly, or sexualized, their behaviors are attributed to their disability. Lodged in a child welfare service system that doesn’t know about disabilities, the thing that is least known is identified as the causative agent. If behavior is assumed to be a manifestation of a disability rather than a traumatic experience, will we provide the right response?

While child welfare has been struggling to provide permanency for children for 25 years, the disability sector is coming to permanency planning more recently, with a few notable exceptions like Michigan, Pennsylvania, and Texas. Texas, for instance, has legislation to assure all children in disability services non-family living arrangements have a permanency plan that is reviewed every six months. While this legislation was passed 20 years after the protections afforded children in the child welfare system, many states don’t yet even offer that protective policy in their disability services.

Supporting Family Life for Maltreated Children

Our collective response to children with disabilities is too frequently placement in settings to get “specialized treatment” to prepare them for community life. Treatment methodologies are written so they can be implemented by interchangeable staff. Treatment is seen as modifying the behavior of the child, rather than modifying the relationships available to the child. The relationships children need are not interchangeable, but rather require the security of a unique attachment to heal wounds of separation and maltreatment. The answer is not preparing for family life and the relationships it offers – the answer is family life and the relationships it offers.

There are some hopeful trends in child welfare in relation to supporting family life for children who have challenges as a result of maltreatment:

There are also hopeful trends supporting family life in disability services for children who have challenging needs as a result of a disability:

The common thread in these promising practices is that they direct resources to surround an anchoring family – one with the requisite time, means, and personal qualities – with the support and expertise they need. These practices recognize the “special” in specialized treatment is “simply” a configuration of well-supported people with training and access to expertise. These promising practices demonstrate how to redirect people and funds to the secure base of a nurturing family.

Conclusion

The way we’ve organized services systems has segregated disability knowledge and maltreatment knowledge in different systems. Child protection workers, judges, attorneys, and police investigators have little training in disability. Disability workers have little training in the behavioral consequences of maltreatment. And in each system, we’re too busy with our own problems and can’t see how to stretch ourselves any thinner to attend to children who, after all, are the “other guy’s” problem. The result is that both systems can respond inappropriately. We need to share knowledge, professionals, families, ideas, training, conferences, and lunchrooms.

The problems are enormous and complex; so too must be the solutions. It takes first looking at ourselves and asking what we don’t-yet-but-should-know- better. Relationships, as we know intuitively and scientifically, are at the heart of what children need and that includes children with disabilities. Committed and personal relationships are more than the goal – they’re the method.


References

Bruhn, C. M. (2003). Children with disabilities: Abuse, neglect, and the child welfare system. In J. L. Mullings, J. W. Marquart, & D. H. Hartley, (Eds.) The victimization of children: Emerging issues, pp. 173-203. Binghamton, NY: Haworth Maltreatment and Trauma Press.

Carlson, E.A., Sampson, M.C., & Sroufe, L.A. (2003). Implications of attachment theory and research for developmental-behavioral pediatrics. Developmental and Behavioral Pediatrics, 24(5), 364-379.

Cassidy, J. & Shaver, R.R. (Eds.) (1999). Handbook of attachment: Theory, research, and clinical applications. New York, NY: Guilford Press.

Greenspan, S. I. (1997). The growth of the mind and the endangered origins of intelligence. Reading, MA: Addison-Wesley Publishing.

Marge, D. K. (Ed.) (2003). A call to action: Ending crimes of violence against children and adults with disabilities. A report to the nation. Syracuse, NY: SUNY Upstate Medical University. Retrieved 1/2/06 from http://www.upstate.edu/pmr/marge.pdf.

Rosenberg, S.A. & Robinson, C.C. (2004). Out-of-home placement for young children with developmental and medical conditions. Child and Youth Services Review, 26, 711-723.

Zeahah, C.H. (2000). Disturbances of attachment in young children adopted from institutions. Developmental and Behavioral Pediatrics, 21(3), 230-236.


Nancy Rosenau is Executive Director with EveryChild Inc., Austin, Texas. She may be reached at 512/342-8846 or by e-mail at nancy@everychildtexas.org.

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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/191/default.html). Citation: Gaylord, V., LaLiberte, T., Lightfoot, E. & Hewitt, A. (Eds.). (2006). Impact: Feature Issue on Children with Disabilities in the Child Welfare System 19(1). [Minneapolis: University of Minnesota, Institute on Community Integration.]
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The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/191/191.pdf.

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