Developmental Disabilities

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Developmental Disabilities

The term developmental disabilities was introduced in the United States in the late 1960s as a term to refer to the disabilities of mental retardation, epilepsy, and cerebral palsy. Parent leaders Elizabeth Boggs and Ilse Helsel advocated for the term in an effort to unify the political efforts of what was then the National Association of Retarded Children and United Cerebral Palsy Association (Pelka 1997). It is a term specific to the United States and, within the United States, specific to legislation meant to focus on individuals whose disability was manifested before age twenty-one. However, although the term does not appear in legislation that mandates any specific services, such as education or health care, it has had the effect that Boggs and Helse intended of unifying groups that were created for specific conditions in the common cause of pursuing rights and opportunities for individuals whose disability occurred in childhood. In 1970, the Developmental Disabilities Services and Facilities Construction Amendment was passed, thus codifying a legislative definition of developmental disabilities. In 1990, the Developmental Disabilities Assistance and Bill of Rights Act incorporated the following definition of developmental disability: "a severe, chronic disability of a person 5 years of age or older" that is "attributable to a mental or physical impairment or a combination of mental or physical impairments" and is "evident before the person attains age 22." A developmental disability is "likely to continue indefinitely" and "results in substantial functional limitations in three or more major life activities including self care, language, learning, mobility, self direction, capacity for independent living, and economic self sufficiency." The use of the term developmental disabilities and the legislative entitlement to education and social security supports and the mandate for accessible physical environments is unique to the United States. Other Western countries have progressive service models but do not have the universal guarantees found in the United States.

Causes of Developmental Disabilities

Developmental disabilities, including mental retardation, autism, and cerebral palsy, are imprecise terms in relation to the underlying etiology and the severity of impairments and disabilities each imposes. Mental retardation, for example, has various underlying causes, including chromosomal abnormalities such as Down's Syndrome and Fragile X. Other causes include inborn errors of metabolism (Phenylketonuria, or P.K.U.), environmental toxins (e.g., lead), prenatal infections (rubella, Cytomegolic inclusion virus, or CMV, and HIV/AIDs), maternal ingestion of alcohol during pregnancy (Fetal Alcohol Syndrome/Effects, or FAS/FAE), postnatal infections (e.g., meningitis) and trauma (e.g., stroke or head injury).

As mapping of the human genome proceeds, the interactions between individual genotypes and environmental conditions are becoming ever more specifically defined. Thus, although conventional wisdom attributed much of individual variation to genetic influences, few of these traits are transmitted in a direct manner. The mapping of the human genome will provide the basis for much greater certainty regarding the interactions between genotype and specific environments that result in specific phenotypes. Although such information will undoubtedly improve treatment options eventually, before that benefit is realized such findings will also increase the frequency of families learning the source of the underlying genomic variation in terms of family pedigree. This knowledge can be expected to be a point of considerable stress both for individuals and marital relationships.

How Do Different Countries Treat People with Developmental Disabilities?

How a country treats its citizens with developmental disabilities varies widely, and no generalizations are possible. In his cross-cultural anthropologic work on traditional cultures in the 1960s, Robert Edgerton found wide variation, with some traditional cultures being fully inclusive of people with developmental disabilities and some traditional cultures rejecting and isolating people with developmental disabilities. Scandinavian countries are credited with providing the intellectual capital and practical innovations that have revolutionized the treatment of people with developmental disabilities throughout the world (Nirje, as cited in Dybwad 1969). This movement in English-speaking countries was characterized as normalization (Kugel and Wolfensberger 1969). Wolf Wolfensberger (1969) and Gunner Dybwad (1969) are widely credited as the key instrumental forces in bringing this concept to the United States and using the concept to change services in English-speaking countries. Although the United States is unique in the breadth of its legislation and policies in support to people with developmental disabilities, the advocacy movement for creating opportunities for self-determination and independence for people with developmental disabilities is truly international (Keith and Schalock 2000).

Impact on the Marital Relationship and the Family

Historically, there have been a number of myths and stereotypes about the impact of a child with a developmental disability upon the marital relationship and the family. Many factors may mediate the impact upon individuals, the marriage, and the family. A major factor can be the underlying etiology of the developmental disability and whether there was anything done or not done—such as maternal consumption of alcohol—that resulted in the disability. If the course of the developmental disability is known and related to known factors in either parents' genetic inheritance or related to action taken (or not taken) by either parent, the diagnosis of a developmental disability presents a situation where the marital relationship may be threatened by both blame and guilt. How and whether the relationship survives such a threat may be influenced by a number of factors, including the parents' individual beliefs, the beliefs and roles played by extended family members, cultural beliefs, extended family, the community and societal supports available to the family, and the family's material well-being.

An individual parent's reaction to a diagnosis is going to have cognitive, emotional, and— possibly—spiritual components, and these components may not be consistent with each other or over time. When discussion of parents' reaction to a diagnosis of mental retardation first began to be reported, it was characterized as grief and chronic sorrow (Solnit and Stark 1961; Olshansky 1962). These characterizations persisted despite cautions that they were obtained from nonrepresentative populations and were viewed through a perspective that saw such disabilities as the most devastating of circumstances for a family (Wolfensberger 1967). Terms such as denial, chronic sorrow, and overprotection, used descriptively, became explanations for parental behavior that was invariably viewed in a negative light (Hartley and Robinson 1987). Ray Barsch characterized this no-win situation:

If the parent is militantly aggressive in seeking to obtain therapeutic services for his child, he may be accused of not realistically accepting his child's limitations. If he does not concern himself with efforts to improve or obtain services, he may be accused of apathetic rejection of his child. If he questions too much, he has a "reaction formation" and may be over-solicitous. If he questions too little, he is branded as disinterested and insensitive. (1968, p. 8)

Although the emphasis on family-centered care includes an acceptance of the variety of parental and family reactions to a diagnosis as legitimate, families still report feeling that they are being judged in their reactions to and methods of coping with a diagnosis of developmental disability or mental retardation.

One of the factors that may mediate a family's reaction to a child with a disability is society's acceptance of disability. Part of the community that historically has not been accepting of developmental disabilities is the medical community. The standard advice given to families when a child's disability was identified at birth or in the first several months of life was that the child should be "institutionalized" and that the family should "get on with their lives." Whether or not the family followed this advice, a critical issue in adjustment was whether there was agreement between the parents—and in many cases support of the decision on the part of the grandparents—regarding whatever decision was made. With the passage of the Developmental Disabilities Act in 1970, the development of increased community supports, and decisions to close institutions, the frequency of institutional placements of young children with developmental disabilities decreased dramatically.

Impact on Siblings

A generalization used to justify a recommendation of institutionalization of a child with a developmental disability has been the assumption that such a child will have a negative impact on other children in the family. The negative impact is assumed to come from the time and material resources the care of the child with a developmental disability demands and from the stigma of the disability itself. Alternatively, those whose ideology rejects institutionalization offer the generalization that having a sibling with a disability will make the sibling a better person. Examples may be found to support both generalizations and this speaks to the importance of not making such generalizations but rather seeking to find the conditions that will help all family members successfully accomplish life tasks of coping and responding, using successful problem solving strategies.

Impact on the Family's Material Well-Being

Despite the progress that has been made on behalf of people with developmental disabilities and their families, there is still a significant negative financial impact for the majority of families that have a child with a developmental disability. Family Voices, a grassroots parent advocacy organization, recently documented the impact on families' financial wellbeing. Care of a child at home in the current environment of piecemeal funding and lack of qualified personnel means that, in many cases, in two parent families one parent cannot join the workforce, or family members who do work must work reduced hours due to lack of other providers, or working family members must stay below a certain income so as to not risk losing benefits.

In sum, all the factors that influence any couple's adjustment to and commitment to a marriage can be expected to play a role in the adjustment of a couple and family to the diagnosis of a child with a disability (Farber 1960; Robinson, Rosenberg, and Beckman 1988; Wikler 1986).

Effect on Romantic Relationships

It was only in the last three decades of the twentieth century that persons with developmental disabilities began to assume a place in society as fully participating members. One aspect of that participation is the development of romantic relationships. One of the myths regarding mental retardation or developmental disabilities is that persons with such disabilities do not have typical romantic feelings. There is nothing about the nature of cognitive disabilities that has direct implications for expression of sexuality (Krajicek 1982). Up until the mid-twentieth century many states had legislation that made it illegal for people with mental retardation to marry. In some states, legislation required sterilization of the mentally retarded. Legislation, beginning with the reauthorization of the Developmental Disabilities Act and Bill of Rights (1975), Section 504 of the Rehabilitation Act (1973), and the Americans with Disabilities Act (1990) has made such state level prohibitions illegal. People with developmental disabilities are now living in the community, getting married, and having children. Although services and supports have been expanded, parents who have developmental disabilities experience a significant prejudice concerning their ability to parent. Although there has been documentation of neglect and abuse by parents with cognitive impairments, it also has been documented that, with both formal and informal supports, parents with cognitive disabilities can provide appropriate parenting. Advocacy movements specific to parenting, such as People First and Through the Looking Glass, have done a great deal to support parents with disabilities. However, unfortunately all too often parents may lose custody of a child due to the a priori assumption that a developmental disability is incompatible with a capacity to successfully parent (Edgerton 1988; Edgerton, Bollinger, and Herr 1984; Rosenberg and McTate 1982, Schilling et al. 1982).

Conclusion

The second half of the twentieth century has witnessed revolutionary changes in philosophy, values, and attitudes toward and rights of persons with developmental disabilities. The period of 1950 to 2000 can be characterized as being devoted to securing the civil rights of individuals with developmental disabilities and their families. The movement—a collaboration of parents, professionals, and self-advocates—has emphasized acceptance of people as people in their own right with whatever limitations are part of that disability. The emphasis on securing rights occurred in a context that, for the most part, discounted efforts regarding search for treatment that would ameliorate a disability as evidence of a lack of acceptance of the person with a disability.

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