The child with challenges, the hurt child, the new orphan, the child of poverty, and the special needs child are all the latest buzz words that describe children who are at risk for or identified with neurodevelopmental delays, disabilities, or other related disorders and are living outside their family of origin. They are children who have been neglected and often abused as well.
The National Adoption Information Clearinghouse (1997) estimated that half of the children available for adoption in this country have a developmental disability, defined as a severe, chronic disability that (a) is attributable to a mental or physical impairment or combination of mental and physical impairments, (b) is manifested before age 22, (c) is likely to continue indefinitely, and (d) results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, and capacity for independent living and economic self-sufficiency. A developmental disability reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services that are lifelong or of extended duration and are individually planned and coordinated. Rodriquez and Jones (1996) indicated that the term developmental disability generally refers to any condition that originates in childhood and impinges on development, with examples of conditions that meet these criteria—autism, cerebral palsy, epilepsy, general developmental delays (if younger than 5 years), or mental retardation.
According to Guralnick (1998), the extraordinary vulnerability of young children at risk for developmental problems due to biological and environmental factors, as well as those children with established developmental factors, has finally been recognized. An established 800,000 children in the United States through age 5 years exhibit significant disabilities (Guralnick, 1998). A substantial number of them manifest such disabilities arising from an array of conditions, including genetic disorders and congenital infections. Guralnick also noted that young children's health and development are compromised by poverty, prematurity, low birthweight, parenting difficulties, abuse and neglect, prenatal exposure to illicit drugs or alcohol, and exposure to toxic substances, such as lead and the hazards found in hostile environments. It is these social and health comorbidities that intersect with the characteristics of the children placed in foster care, as well as gender and age, for those children who are available for adoptive and/or permanent homes.
Meyers, Lukemeyer, and Smeeding (1998) showed that the rate of disabilities and chronic illnesses in children receiving Temporary Assistance to Needy Families is about twice that of children in the general population. One fifth of low-income welfare recipients were found to be caring for a child with a disability or chronic illness. Over 10% cared for either a child who had severe disabilities or more than one child with special needs. For this study a disability was identified as moderate if the child needed “a little” help with daily activities and was unable to take part in typical age-appropriate activities and required some special education. Meyers et al. reported that the majority of families who had incomes at or below the poverty level were (a) characterized by low maternal education, (b) were unmarried, (c) had more than one child, (d) were African American or Latino, and (d) had unemployed parent(s). Similarly, in relationship to these characteristics, the following indicators of hardship were high: (a) hunger, (b) homelessness, (c) evictions [late rent and/or mortgage payments], and (d) utilities and phone disconnections. These indicators are strongly correlated as well with the removal of children from their parents due to neglect.
Presently, “the number of children in foster care is rising throughout the country as more and more people have concluded that it is better to take children from dangerous homes than try to repair families” (Cincinnati Enquirer, 1998). It has also been noted that children in foster care have a lower health status than even homeless children and children living in the poorest sections of the inner cities (Foster Care, 1994) and that often these children have not received immunizations and are at high risk for other health-related and developmental problems attributable to caretaker neglect and absence and other possible exposures (Foster Care, 1993).
The complexities of these children due to their early life experiences challenge the foster care and adoption agency systems of the present and upcoming century. Families of all social, economic, educational, and ethnic backgrounds not only need to be recruited and retained, but prepared and educated to care for these complex children. This calls for a skilled approach to developing new families and new approaches for parenting these children with disabilities.
Creating safe, loving, and permanent families needs to be approached in a systematic and competent manner for all waiting children and, in particular, for those who are at risk for developmental disabilities. Without an accurate knowledge base regarding familial and systemic factors that sustain permanency and eliminate the barriers to successful family building, the Presidential Directive of December 1996 “Adoption 2002” may end up promoting quick, uninformed decisions based on a goal of doubling finalizations for permanency, yet increase the potential for disruptions and/or abrogations in the future.
It is time that mental retardation/developmental disability agencies, university centers on disabilities, and the public and private foster/adoption agencies partner to show their true relationship potential to one another so as to enhance and further develop persons who want to create or expand their families to include a child who is at risk for or identified with a developmental delay, disability, or other related disorder.
Advancing policy and practice takes place through education regarding developmental disabilities for agency workers and prospective parents of children. This assists in the reduction of fear and anxiety about how the child may be as a teen or adult and, further, helps workers to conduct their home studies: reevaluate the relationship components, and determine whether the marital and/or family subsystem can, at that particular time, absorb the additional psychosocial stressors related to parenting these children.
The new concept of the “foster to adopt” family (the new pioneer) encourages affective bonding, whereas 10 to 15 years ago foster parents were advised not to get too emotionally close to the child they were caring for. The foster to adopt family selected by an agency who partners with professionals in the field of developmental disabilities can be involved in the following opportunities: (a) preadoptive parent groups that are focused on the different types of delays, disabilities, and other related disorders (e.g., parents can find out the possible implications for future issues related to such disorders as Down syndrome or fetal alcohol syndrome/fetal alcohol effect); (b) postadoption parent groups to integrate positive parenting approaches to use with children who have specific issues, such as those related to learning disabilities, mental retardation, and attachment issues; (c) workshops for families and forums for professionals, such as those focused on the origins of sexual behaviors in the home; the use, underuse, or overuse of medications for children with developmental disorders; (d) interdisciplinary child assessments to inform families of the child's present abilities as well as the development of future goals and a unique plan of care, including community resources available to each family for the child with a developmental disorder; (e) child groups focused on helping children understand their own differences as well as their feelings of losing their family of origin and issues related to neglect and abuse; (f) formal measures or scales administered to the agency's matched families that depict whether the family is functioning adequately, optimally, or at a dysfunctional level (i.e., Self-Report Inventory—Beaver & Hampson, 1990; Index of Family Relations—Hudson, 1982; and Index of Parental Attitudes—Hudson, 1982). These tools can affirm the agency family selection as well as pick up on any problems in relationships that need attention and prevent dissolutions, through interventions.
Professionals in the field of developmental disabilities need to reach out to provide their expertise and partner with child welfare professionals in order to increase both timely and successful permanent homes for children with or identified as at-risk for neurodevelopmental delays, disabilities, and other related disorders.
AuthorBarbara Hanley, PhD, Cincinnati Children's Division of Developmental Disabilities, 4–60B, Building E, 3333 Burnet Ave., Cincinnati, OH 45229. email@example.com