Chronic severe disabilities such as mental retardation, cerebral palsy, autism and other handicapping conditions.
The Federal Disabilities Act of 1984, P.L. 98-527, Sec. 102(7), further defines a developmental disability as a condition that occurs before age 22, can be attributed to a physical and/or mental impairment and is likely to continue. In addition, the individual experiences limits in three or more of the following areas: self-care, language, learning, mobility, self-direction, potential for independent living and potential for economic self-sufficiency as an adult.
Within the many categories of developmental disabilities, children may face mild to severe problems; for example, within the category of retardation, some children are educable, other children are trainable, while other children are extremely retarded and function at the most basic level. Other children may have a disability, such as blindness, epilepsy or spina bifida, and yet are not classified as "developmentally disabled" because they are able to function acceptably with medical or technological support.
Developmental disabilities are not always detectable in infancy and may not show up until the child enters school and must compete with other children of the same age.
A number of legal issues affect developmentally delayed or disabled individuals. Some of these issues are the right to a free public education (a right denied to many handicapped children until recently), the right to live in a community and the right to marry and have children and also to have appropriate modifications made at the job site.
Because only limited care was available at many institutions, many physically and mentally retarded individuals were committed for life, usually to state hospitals. Their low level of functioning was seen as proof that they would be unable to function outside the institution. Consequently, disabled individuals were placed in a no-win and self-fulfilling situation. They were not taught necessary skills and behaviors and then because they didn't exhibit "normal" behavior that they were never taught, many people believed this proved disabled individuals couldn't learn or be socialized. This belief has been discarded by most people, who instead believe that developmentally disabled children can learn far more than was past believed. However, many still have difficulty functioning in the community without help.
In 1975, Congress enacted the Education for All Handicapped Children Act, comparing the case of disabled children to minority children who were denied schooling prior to Brown v. Board of Education in 1954. In 1990 the act was retitled the Individuals with Disabilities Education Act (IDEA), which was reauthorized in 1998. IDEA covers many disabilities, including LEARNING DISABILITIES, as well as severe mental disorders, mental developmental disabilities and others, and states that a free public education is an entitlement of disabled children as well as nondisabled children.
Adoptive parents of developmentally delayed children should be flexible people with realistic goals who can be positive about small improvements and changes in a child. In addition, it's very helpful if they have a support group of other adoptive parents or parents of disabled children. Support groups can also assist adoptive parents in learning about community resources for their children.
Although the federal government has defined the term developmentally delayed, it is still important for individuals considering adopting a child to obtain specific information from state and private agencies on their definitions of a disability. Some agencies consider a child born as a result of rape or incest to be a special needs child, although the child may suffer no physical or mental abnormalities at birth.
The outcome for families who have adopted children with developmental disabilities is surprisingly positive. For example, a study of 52 families who had adopted 114 children with developmental disabilities, reported in Children and Youth Services Review in 1996, found that the majority of parents (79%) were "highly satisfied" that they had adopted their child. In fact, 60% had adopted other children with disabilities.
The study revealed that the parents found adoption SUBSIDY and MEDICAID to be very important and said that they could not have afforded to adopt without these supports in place. When asked which services were most important to the families, parents indicated: special education (88.5% of the families cited as important), dental care (63.5%), counseling (59.6%) and respite care (7.7%). The parents were most likely to receive counseling services; however, less than 25% found it adequate. They were least likely to receive respite services (time off while someone else cared for the child).
In about six cases, families were given incorrect information on their children's diagnoses. In fact, in two cases, families were told their children were severely retarded and this was found to be untrue.
Said the researchers, "Families often challenge themselves to do what the lay person, and even the professional, may see as the 'impossible.' However, as noted earlier, the demands of caring for an adopted child with chronic illness or disabilities has much less of a negative impact on family life than might be expected. Quite the contrary, most of the families spoke often of the joy and meaning their children had brought to their lives. However, when they did need help, they did not want their reaching out to be seen as failure." Researchers also found that the parents wanted to be taken seriously by professionals and work with them rather than be dictated to.
Children from Other Countries
Children from other countries may also have developmental disabilities that could be greatly helped by technological advances in medicine. However, prospective parents must remember that, although the disability may be reparable in the United States or Canada, the impact of prolonged institutional living, neglect and discrimination may not be reversible. (See also INTERNATIONAL ADOPTION; ROMANIAN ADOPTION; RUSSIAN ADOPTION.)
Individuals considering adopting a developmentally delayed child should obtain as much information as possible on the particular medical ailments of the child and should also have appropriate specialists carefully review the medical records of the child before assuming parental responsibility.
Although it may be difficult to find families for children with developmental delays, many social workers believe it is possible and well worth the effort.
Individuals who adopt developmentally delayed children may also be eligible for adoption subsidies, which will help cover the costs of needed medical and/or psychological treatment. (See also ADOPTION ASSISTANCE PROGRAM; DISABILITIES OF ADOPTIVE PARENTS; DOWN SYNDROME; LEARNING DISABILITIES.)
Parent support and information groups are available to provide information on many disabling conditions. One organization that provides information is the National Resources Center for Special Needs Adoption.
Contact them at
16250 Northland Dr., Suite 120
Southfield, MI 48075
Exceptional Child magazine can provide referrals to such groups, as can the National Organization for Rare Disabilities (NORD).
L. Anne Babb and Rita Laws, Adopting and Advocating for the Special Needs Child. (Westport, Conn.: Bergin & Garvey, 1997).
Eva Brown, "Recruiting Adoptive Parents for Children with Developmental Disabilities," Child Welfare 67 (March-April 1988): 123-135.
Robert Capterton Hannon, "Returning to the True Goal of the Individuals with Disabilities Education Act: Self-Sufficiency," Vanderbilt Law Review 50, no. 3 (April 1997): 715.
Anita Lightburn and Barbara A. Pine, "Supporting and Enhancing the Adoption of Children with Developmental Disabilities," Children and Youth Services Review 18, nos. 1-2 (1996): 139-162.
Siegfried M. Pueschel, M.D., Ph.D., M.P.H., James C. Bernier, M.S.W., and Leslie E. Weidenman, Ph.D., The Special Child: A Source Book for Parents of Children with Developmental Disabilities (Baltimore: Paul H. Brookes, 1988).
Find more information on developmental disabilities
©2000 by Christine Adamec and William Pierce, Ph.D. Reprinted from The Encyclopedia of Adoption, 2nd Edition (2nd Edition) with permission of Facts On File, Inc.
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