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2000 Jordan Institute
for Families

Vol. 2, No. 3
June 1997

Behind the Growing Number of Special Needs Children

We call them "special needs" children. Some are HIV positive, others have full-blown AIDS. Some are born prematurely, some are born addicted to drugs. Others have physical handicaps or are developmentally delayed. All of them have one or more medical conditions that seriously affect their bodies, their behavior, and the lives of those who care for them.

In recent years, departments of social services have seen a dramatic rise in the number of children with special needs. Many social workers, even those with years of experience, may be daunted by the tasks of learning about these children, assessing their safety, and arranging for foster and adoptive placements that meet their complex needs.

In this article we will address the following questions: Why have the numbers of these challenging children increased so sharply? What should social workers know about the risks faced by special needs children? Most importantly, what can social workers do to support these children and the families who care for them?

Increasing Numbers

Across the country, more and more children are coming into foster care with serious medical problems. In 1986, estimates indicated that between 29 and 41 percent of the young children coming into care in the United States had serious medical problems. That percentage shot up to 62 percent in 1991, and this figure is thought to be a conservative one (MacLafferty, 1994). North Carolina is just beginning to collect data on special needs children involved with social services (Fulton, 1997).

In her 1994 article in the journal Community Alternatives, Ann Helton Stromberg explores this rise in the numbers of special needs children coming into the child welfare system. In her discussion, she names the factors she believes have contributed to this increase:

  1. Since 1985, the incidence of substance abuse during pregnancy has tripled. Consequently, there has been an increase in the number of infants born drug-exposed or drug-addicted;

  2. The number of infants and children who are HIV-positive or have AIDS is on the rise;

  3. As a result of improved medical care and technology, the survival rates for seriously-impaired neonates and children with serious pediatric disorders has increased. The range of traditional social services has not been able to meet the growing demand for support from families who care for these children;

  4. Changes in medical insurance coverage and the cost-effectiveness of home health care, have limited the amount of time a seriously-ill child can remain in hospitals or other institutional settings;

  5. Nationwide, there has been a concerted effort (often driven by deinstitutionalization legislation), to care for seriously-ill children in a family-like environment. This effort is motivated by our growing understanding of the negative impact long-term institutional care has on children's development and well-being (Stromberg, 1994).

Increased Risks

We know that record numbers of children with special needs are entering the child welfare system, and we have some idea as to why, but what do we know of the risks they face?

Children with physical disabilities are at greater risk for maltreatment than other children (Glaser & Bentovim, 1979; Jaudes & Diamond, 1985). The demands they place on any caregiver are exceptional; when combined with financial, marital, or other stresses, some families find them unbearable.

Research suggests that this is especially true in the case of families with low socioeconomic status. According to Roger White and colleagues (1987), "the most consistently reported demographic factor associated with reported child abuse or neglect is low socioeconomic status." It is reasonable to assume, they say, that the strain of caring for a physically handicapped child only adds to existing financial and social stresses, sometimes pushing a family's ability to cope to the breaking point.

Studies also suggest that children with physical disabilities are at greater risk for certain types of maltreatment. In their paper Abuse and Risk to Handicapped and Chronically Ill Children, Danya Glaser and Arnon Bentovim (1979) found that parents of handicapped children were much more likely to neglect than abuse them. These researchers do not speculate as to why this is the case.

Studies have also shown that handicapped children are at greater risk of maltreatment after the disability becomes apparent to the parent or caretaker (Benjamin & Uchytol, 1982). Most parents experience pain and trauma when their child is born or diagnosed with a physical or mental disability. Some parents will feel inadequate and view the child's disability as a threat to their self-esteem. Given this fact, social workers should be especially attentive to parents during this time, supporting them through empathic listening.

In addition, children with serious medical needs are at an increased risk of experiencing developmental delay, above and beyond the trauma of parental abuse or neglect (Jaudes, 1985). For example, a chronically ill child who spends a substantial amount of time in the hospital may fail to bond to a primary caregiver. Furthermore, these children have often experienced hurtful medical interventions and may have permanent physical impairments. These experiences can lead to body image problems and low self-esteem, which can in turn be manifested in family, peer, and school problems (Telfair, 1994).

Children with chronic conditions often run into difficulty at school. Some of these difficulties take the form of academic troubles caused by absences and inability to participate due to their health (Morgan & Jackson, 1986). Physically handicapped children can also be vulnerable to problems of fitting in with and being accepted by their peers, especially at school (Van Hook, 1992). Teachers and school counselors can be great resources to assist the child in managing his or her life at school.

There are also medical risks for children with special needs when they move into foster care. These children often cannot continue to see the doctors familiar with their conditions. Sometimes this is due to the placement itself—the child's foster home may be in a new neighborhood far from the child's current medical care provider. Other times the quality of medical care is compromised by insufficient information—when a child is removed from her home, parental anger or other factors sometimes prevent a social worker from obtaining complete information about the child's medical condition and care (Benjamin & Uchytol, 1982).

Support Needs

There are several steps social workers can take to support the children with special needs in their caseload.

A good place to start is education: learn about the child's disability and how it could affect his or her development. If he or she has a medical condition with which you are unfamiliar, it may be necessary to consult a physician or specialist. In North Carolina, another place you can turn is the Family Support Network, a nonprofit service that provides information to social workers and families caring for children with special needs. They have a database with information on over 900 medical conditions. They can be reached by calling (800) 852-0042.

It is also important to learn about the laws that govern the rights of disabled children. For information about education laws, call the Exceptional Children's Assistance Center (800/962-6817). For other disability-related legal information, call the N.C. Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (919/733-3654).

The best way to support the special needs child, however, is to support the family taking care of the child. Work with the family (birth, foster, or adoptive) to develop a diverse network of support resources to help them manage the demands of caring for the child. This network may include devices (such as a cellular phone or special walkers) as well as people. Equally crucial to the success of a special needs foster placement is respite care. Our practice experience tells us that special needs children do best in foster care if we can support foster parents to the degree that we desire and expect them to support the child.

References

Benjamin, T. & Uchytol, E. (1982). Home is where the care is. Oregon: Children Services Division, Foster Parent Education Program.

Fulton, P. (1997). Phone conversation. Raleigh, N.C.: N.C. Division of Social Services.

Glaser, D. & Bentovim, A. (1979). Abuse and risk to handicapped and chronically ill children. Child Abuse and Neglect, 3, 565-575.

Jaudes, P. & Diamond, L. (1985). The handicapped child and child abuse. Child Abuse and Neglect, 9, 341-347.

MacLafferty, R., et al. (1994). Foster care: Parental drug abuse has alarming impact on young children. (GAO/HEHS-94-89). Washington, D.C.: U. S. Department of Health, Education and Human Services.

Morgan, S. R., & Jackson, J. (1986). Psychological and social concomitants of sickle cell anemia in adolescents. Journal of Pediatric Psychology, 11(31), 429-440.

Rycus, J. S., Hughes, R. C., & Garrison, J. K. (1989). Child protective services: A training curriculum. Washington, D.C.: Child Welfare League of America.

Stromberg, A. H. (1994). Foster parents of children with special medical care needs: Their characteristics and reasons for involvement. Community Alternatives, 6(2), 57-75.

Telfair, J. (1994). Factors in the long term adjustment of children and adolescents with sickle cell disease: Conceptualizations and review of the literature. Journal of Health and Social Policy, 5(3/4), 69-96.

Van Hook, M. (1992). Integrating children with disabilities: An ongoing challenge. Social Work in Education, 14(1), 25-35.

White, R., Benedict, M., Wulff, L., & Kelley, M. (1987). Physical disabilities and risk factors for child maltreatment. American Journal of Orthopsychiatry, 57(1), 93-101.

1997 Jordan Institute for Families