Families with Unique Challenges

Poverty

According to 1989 Census Bureau statistics, a family of three was judged poor if its annual income was under $9,885. Families who have difficulty in obtaining and maintaining adequate housing, food, and medical care may find it particularly difficult to participate in their children's schooling. The logistical and economic difficulties of arranging transportation, time off from work, and child care for other children in the home may make a visit to their child's school an unlikely event (Turnbull & Turnbull, 1990).

Homelessness is a growing problem linked to poverty. Single-parent families may make up as many as one-third of the population of homeless persons (Turnbull & Turnbull, 1990). The Children's Defense Fund estimated from 1989 Census Bureau Data that the youngest Americans have the highest chance of being poor, with 20.1 percent of children under six years of age living in poverty.

Families in Urban Areas

Repetto (990), in a report on vocational education, noted the many challenges faced by educators and families living in urban areas. Decreases in population, employment, services, and financial revenues have occurred simultaneously with increases in unskilled immigrant groups, teen parents, drug abuse, and homelessness (Hill, Wise, & Shapiro, 1989, cited in Repetto, 1990).

Families in central urban areas are faced with problems that can jeopardize the welfare of their children. The National League of Cities (Born, 1989, cited in Repetto, 1990) identified the following obstacles: (a) 20 percent of the children living in urban America live in poverty; (b) housing costs have increased three times faster than per capita income; (c) young people in the United States abuse drugs more than youth in other industrialized countries; and (d) 75 percent of this country's mothers find it difficult to obtain adequate child care (p. 1).

The National Center for Education Statistics reported that dropout rates for youth in inner cities were significantly higher than for youth attending non urban schools (Kaufman & Frase, 1990, cited in Repetto, 1990). In some urban areas the rate of failure to graduate from high school approaches one half.

Urban schools face a multitude of special needs. Repetto (990) noted that the majority of these districts had found it necessary to initiate a variety of special programs for pregnant and parenting students, students who abused drugs, and those who were at risk for dropping out.

Repetto's (990) review of best practices literature indicated that successful urban education programs are characterized by high standards for all students, curricula that stress the relationship between school and real-life demands of living in the city, and cooperative efforts between schools, employers, social service providers, and families. After reviewing data on a number of successful urban school programs around the nation, Repetto (990) concluded that collaborative relationships between schools and other agencies in the larger community are necessary to resolve the many problems faced by educators in urban areas.

Families in Rural Areas

Rural areas are defined here as geographic areas with less than 150 people per square mile. Helge (1988) reported that disproportionate numbers of poverty stricken families and minorities often reside in rural areas.

Families of children with disabilities in these areas may feel isolated and lonely. They are often faced with unique day-to-day burdens such as driving long distances to take their child to needed services and having little contact with other parents and support systems (Turnbull & Turnbull, 1990).

Shortages and difficulties have been noted in providing many needed services to persons with disabilities residing in rural areas. These include: audiology and speech-language pathology (London, 1986), vocational education (Mori, 1983), and school psychology (Fagan, 1988). Personnel in rural settings also find it difficult to provide adequate transportation and recreational services for students with severe disabilities (Hamre-Nietupski, 1982).

Personnel shortages impact the delivery of education services. School districts in rural settings tend to be more isolated in the overall state services delivery system. These school districts must contend with a disproportionate concentration of services in urban settings. School districts must also cope with significantly higher attrition rates among their personnel than their urban counterparts. Finally, school districts must integrate information and knowledge from a variety of disciplines without the help or support of ancillary personnel. These are critical needs if persons with disabilities in rural settings are to receive educational, vocational, domestic, and recreational opportunities in natural, integrated environments.

Substance Abuse

Children born of substance abusing parents are threatened by multiple physical, emotional, nutritional, and medical risk factors. In the alarming number of cases where the infant is exposed to drugs or alcohol before birth, the interaction of the resulting disabilities with a potentially unhealthy and unsafe home environment poses even greater risks (Kanagawa, 1991).

Two specific groups of infants prenatally exposed to drugs and born with disabilities are receiving increased attention today. The first group includes infants born with fetal alcohol syndrome (FAS). Pregnant women who abuse alcohol are at risk for giving birth to a child with intellectual, emotional, and/or physical disabilities. Children with FAS may be mentally retarded, smaller in physical size than normal, irritable or hyperactive, and have irregular features of the nose, chin, or eyes. FAS is considered to be a leading cause of mental retardation in the United States.

The second group of infants born with disabilities due to prenatal exposure to drugs are the cocaine or "crack babies." These infants also show a wide range of problems including hyperirritability, poor feeding patterns, irregular sleeping patterns, low birth weight, premature birth, and respiratory problems. In addition, approximately 75 percent of instances of AIDS in newborns are linked to maternal abuse of drugs during pregnancy (Kanagawa, 1991).

In her review of literature, Kanagawa (991) noted that children born to parents who abuse drugs and alcohol often face a home environment poorly suited to meet the needs of a young child. Some of these babies are left in the hospitals and abandoned. These infants may be cared for by relatives on a voluntary basis without any supports or financial aids, or they may be placed in some type of substitute care setting. Halfon 0989, cited by Kanagawa, 1991) reported that drug-related foster placements in Los Angeles increased by 1,100 percent between 1981 and 1987.

How the field of special education will meet the challenges presented by these children born to substance abusing parents remains to be seen. Kanagawa (991) recommended the following:

1. Individualized services should be focused on the unique needs and problems of both the child and the primary caregiver.
2. Services to these children are best delivered within a family setting. This might include family, foster, or adoptive home settings, as long as they are stable environments with at least one permanent caretaker.
3. Caregivers must be viewed as equal partners in service and development delivery.
4. Comprehensive services should be coordinated across agencies.
5. Services should be delivered without discrimination or value judgments relative to cultural diversity and alternative lifestyles.

Physical Abuse

Child abuse is a significant problem in contemporary U.S. society. The United States has the highest rate of reported child abuse and neglect of any industrialized country in the world. Parents in all socioeconomic and cultural groups emotionally and physically abuse their own children (Meier and Sloan, 1984). Estimates of the number of abused children who have physical, intellectual, or emotional disabilities vary widely and range from 8 to 55 percent (Blacher & Meyers, 1983; Daly & Wilson, 1981; Frodi, 1981).

In some cases, child abuse may cause disabilities. In other situations, the abuse may result from the presence of some preexisting disability (Turnbull & Turnbull, 1990). Some children with disabilities may be difficult to manage, hard to comfort, or unresponsive to their parents (Blacher & Meyers, 1983). Parents who were abused in childhood and are prone to aggression as a result may respond to such children with abusive behaviors (Turnbull & Turnbull, 1990). Repeated instances of physical and emotional abuse over a long period of time may increase the severity of disability (Meier & Sloan, 1984).

While the presence of a disability may place the child at risk for abuse, Turnbull and Turnbull (990) pointed out that it would be incorrect to assume that the majority of children with disabilities are abused. The largest number of children with disabilities are not abused or neglected.

Schools and other agencies are developing educational programs in an attempt to teach children to discriminate between appropriate and inappropriate touching, and between appropriate punishment and physical abuse (Turnbull & Turnbull, 1990). Children are encouraged to report sexual or physical abuse to a trusted adult. These programs are critical because abuse of a child is often denied in a family. In sexual abuse, the child may be intimidated by the abusing adult into keeping the abuse a secret. The child may be too afraid or embarrassed to report the abusive behaviors of an adult on whom he or she is dependent.

Professionals are mandated by law to report instances of suspected child abuse. Professionals are not in agreement as to whether the family should be informed as to who filed the report. While many states guarantee confidentiality, it may still be possible to determine the identity of the informant (Turnbull & Turnbull, 1990).

Another point of disagreement among professionals is how to end child abuse. Removing the child may cause grief and marital discord for the parents (Meier & Sloan, 1984) and result in confusion, emotional trauma, and loss of a permanent family setting for the child. Some legal professionals have demanded the abusing parent be removed from the home and ordered to undergo therapy or counseling. This approach attempts to avoid punishing the child with the trauma of being removed from the home and placed in foster care. Both approaches result in disruption of the family unit. While it was once widely held by social service and legal professionals that it is always in the child's best interest to remain with the natural parents, this view is now frequently debated in professional circles and courts of law.

Meier and Sloan (1984) pointed out that child abuse is one of the most frustrating and difficult problems encountered by professionals. Working with children whose parents purposely and repeatedly injure them can be very painful. It is also frustrating to realize that we have not yet developed any interventions that are effective on a long-term basis. Sadly, many abused children grow up to become adults who repeat the pattern of abuse and neglect with their own children.

Parents Who Experience Disabilities

One result of the recent emphasis on protecting the legal and human rights of persons with disabilities is that more of these individuals are allowed to experience heterosexual relationships such as friendships, dating, and marriage. Some of these persons will become parents.

Turnbull and Turnbull (1990) identified two sensitive issues that arise when persons with intellectual or psychological disabilities become parents. First, there are social and legal prohibitions against persons who are mentally retarded or mentally ill having children. In some states, these individuals can be legally barred from marriage or reproduction. In other cases, parents may decide to obtain some form of birth control for their children with disabilities when they reach sexual maturity with or without the child's consent. As Turnbull and Turnbull (1990) pointed out, these same restrictions are typically not applied to persons who have different problems that might raise questions about their ability to parent, such as chronic drug abuse or a history of violence.

The second issue involving parents who have disabilities noted by Turnbull and Turnbull (1990) is the assumption of parental incompetence. While low IQ does not preclude the possibility that an individual can raise healthy children, it means that supports for both the parent and child are needed. Child care skills, homemaking skills, consumer skills, assistance with managing finances, and vocational training may be needed by the parent. We should remember, however, two important points. First, these same skills are needed by many parents without disabilities. Unfortunately, parenting skills are still learned "on-the-job" by most individuals. Second, child abuse and neglect occur across all social, economic, and educational levels.

Noncustodial Biological Parents

Over half a million children are growing up in settings other than their natural homes. Many of these children have disabilities. Some biological parents have been legally forced to relinquish custody of their children because the courts have deemed them unfit parents. Child abuse and neglect have often occurred in these cases. Other parents, however, have voluntarily made the decision to give up custody of their child. In still other instances, parents have opted to retain legal custody of their child but to place the child in a residential setting other than their own home.

What factors might compel parents to place their child outside of the home? What are the effects of such a decision on the parents, the child, siblings, and other family members? These are important questions. They are questions that are difficult to answer for several reasons. First, the factors involved in the decision to keep a child with disabilities in the home or to place that child outside of the family home are many and complex. How a particular family copes with a child with disabilities is influenced by many factors including amount of resources and information available to the family, level of income, education, family dynamics, religion, and federal, state, and local policies in effect that apply to persons with disabilities and their families. Every family is unique. Generalizations are hard to make.

Decisions made by families about where a child with disabilities will reside are also influenced by the scientific knowledge base available. For example, prior to 1975, many professionals believed that competitive employment, living in the community, and attending integrated schools were beyond the capabilities of persons with moderate to severe disabilities. Today these same goals characterize state-of-the-art programs. We now know more about the learning capabilities of these individuals and, as a result, have developed more effective teaching strategies.

Another reason that makes it difficult to answer questions regarding noncustodial biological parents is that the field of special education focuses on the child to a much greater extent than the family. We have a much richer understanding of children with disabilities than of their families. This almost exclusive emphasis on the child is evident in demographic data collected by federal and state agencies. While many statistical profiles of children who are placed outside of the home are available, very few statistics are collected on the biological families of these children.