Disabilities

Disability places a set of extra demands or challenges on the family system; most of these demands last for a long time (Murphy 1982). Many of these challenges cut across disability type, age of the person with the disability, and type of family in which the person lives. There is the financial burden associated with getting health, education, and social services; buying or renting equipment and devices; making accommodations to the home; transportation; and medications and special food. For many of these financial items, the person or family may be eligible for payment or reimbursement from an insurance company and/or a publicly funded program such as Medicaid or Supplemental Security Income. However, knowing what services and programs one is eligible for and then working with a bureaucracy to certify that eligibility (often repeatedly) is another major challenge faced by families. Coordination of services among different providers (such as a physician, physical therapist, occupational therapist, dietician, social worker, teacher, and counselor) who often are not aware of what the other is doing and may provide discrepant information is another challenge faced by families (Sloper and Turner 1992). While care coordination or case management is often the stated goal of service programs, there are many flaws in implementation. Families experience the burden of this lack of coordination.

A mother and young daughter communicate through sign language. Families find ways to cope with the demands that having a disability adds to family life. CUSTOM MEDICAL STOCK PHOTO, INC.

The day-to-day strain of providing care and assistance leads to exhaustion and fatigue, taxing the physical and emotional energy of family members. There are a whole set of issues that create emotional strain, including worry, guilt, anxiety, anger, and uncertainty about the cause of the disability, about the future, about the needs of other family members, about whether one is providing enough assistance, and so on. Grieving over the loss of function of the person with the disability is experienced at the time of onset, and often repeatedly at other stages in the person's life.

Family life is changed, often in major ways. Care-taking responsibilities may lead to changed or abandoned career plans. Female family members are more likely to take on caregiving roles and thus give up or change their work roles. This is also influenced by the fact that males are able to earn more money for work in society. When the added financial burden of disability is considered, this is the most efficient way for families to divide role responsibilities.

New alliances and loyalties between family members sometimes emerge, with some members feeling excluded and others being overly drawn in. For example, the primary caregiver may become overly involved with the person with disability. This has been noted particularly with regard to mothers of children with disabilities. In these families, fathers often are underinvolved with the child and instead immerse themselves in work or leisure activities. This pattern usually is associated with more marital conflict. It is important to note, however, that there does not appear to be a greater incidence of divorce among families who have a child with a disability, although there may exist more marital tension (Hirst 1991; Sabbeth and Leventhal 1984).

The disability can consume a disproportionate share of a family's resources of time, energy, and money, so that other individual and family needs go unmet. Families often talk about living "one day at a time." The family's lifestyle and leisure activities are altered. A family's dreams and plans for the future may be given up. Social roles are disrupted because often there is not enough time, money, or energy to devote to them (Singhi et al. 1990).

Friends, neighbors, and people in the community may react negatively to the disability by avoidance, disparaging remarks or looks, or overt efforts to exclude people with disabilities and their families. Despite the passage of the Americans with Disabilities Act in 1990, many communities still lack programs, facilities, and resources that allow for the full inclusion of persons with disabilities. Families often report that the person with the disability is not a major burden for them. The burden comes from dealing with people in the community whose attitudes and behaviors are judgmental, stigmatizing, and rejecting of the disabled individual and his or her family (Knoll 1992; Turnbull et al. 1993). Family members report that these negative attitudes and behaviors often are characteristic of their friends, relatives, and service providers as well as strangers (Patterson and Leonard 1994).

Overall, stress from these added demands of disability in family life can negatively affect the health and functioning of family members (Patterson 1988; Varni and Wallander 1988). Numerous studies report that there is all increased risk of psychological and behavioral symptoms in the family members of persons with disabilities (Cadman et al. 1987; Singer and Powers 1993; Vance, Fazan, and Satterwhite 1980). However, even though disability increases the risk for these problems, most adults and children who have a member with a disability do not show psychological or behavioral problems. They have found ways to cope with this added stress in their lives. Increasingly, the literature on families and disabilities emphasizes this adaptive capacity of families. It has been called family resilience (Patterson 1991b; Singer and Powers 1993; Turnbull et al. 1993). Many families actually report that the presence of disability has strengthened them as a family—they become closer, more accepting of others, have deeper faith, discover new friends, develop greater respect for life, improve their sense of mastery, and so on.

While there are many commonalities regarding the impact of disabilities on families, other factors lead to variability in the impact of disability on the family. Included in these factors are the type of disability, which member of the family gets the disability, and the age of onset of the disability.

Disabilities vary along several dimensions, including the degree and type of incapacitation (sensory, motor, or cognitive); the degree of visibility of the disability; whether the course of the condition is constant, relapsing, or progressive; the prognosis or life expectancy of the person; the amount of pain or other symptoms experienced; and the amount of care or treatment required. John Rolland (1994) has outlined a typology of chronic conditions based on some of these factors and has described the psychosocial impact on families based on these factors. His argument, and that of several others (Perrin et al. 1993; Stein et al. 1993), is that the variability in the psychosocial impact of chronic conditions is related more to characteristics of the condition than to the diagnosis per se.

Consider the course of the condition. When it is progressive (such as degenerative arthritis or dementia), the symptomatic person may become increasingly less functional. The family is faced with increasing caretaking demands, uncertainty about the degree of dependency and what living arrangement is best, as well as grieving continuous loss. These families need to readjust continuously to the increasing strain and must be willing to find and utilize outside resources. If a condition has a relapsing course (such as epilepsy or cancer in remission), the ongoing care may be less, but a family needs to be able to reorganize itself quickly and mobilize resources when the condition flares up. They must be able to move from normalcy to crisis alert rapidly. An accumulation of these dramatic transitions can exhaust a family. Disabilities with a constant course (such as a spinal cord injury) require major reorganization of the family at the outset and then perseverance and stamina for a long time. While these families can plan, knowing what is ahead, limited community resources to help them may lead to exhaustion.

Disabilities where mental ability is limited seem to be more difficult for families to cope with (Breslau 1993; Cole and Reiss 1993; Holroyd and Guthrie 1986). This may be due to greater dependency requiring more vigilance by family members, or because it limits the person's ability to take on responsible roles, and perhaps limits the possibilities for independent living. If the mental impairment is severe, it may create an extra kind of strain for families because the person is physically present in the family but mentally absent. This kind of incongruence between physical presence and psychological presence has been called boundary ambiguity (Boss 1993). Boundary ambiguity means that it is not entirely clear to family members whether the person (with the disability in this case) is part of the family or not because the person is there in some ways but not in others. Generally, families experience more distress when situations are ambiguous or unclear because they do not know what to expect and may have a harder time planning the roles of other family members to accommodate this uncertainty.

In addition to cognitive impairment, other characteristics of disabilities can create ambiguity and uncertainty for families. For example, an uncertain life expectancy makes it difficult to plan future life roles, to anticipate costs of care, or to make decisions about the best living arrangements for adults requiring assistance in the activities of daily living. For example, from 1970 to 1991, survival for children with cystic fibrosis increased 700 percent, to a life expectancy of twenty-six years in the United States (Fitzsimmons 1991). These young adults now face difficult family decisions, such as whether to marry and whether to have children. In more extreme cases related to severe medical conditions, persons may have their lives extended by using advances in biomedical science and technology. When this happens, families can be faced with very difficult decisions about what techniques and equipment should be used, for how long, with what expected gains, at what cost, and so on. Society is facing new issues in biomedical ethics, but there is no social consensus about how aggressively to intervene and under what circumstances. Family members who bear the emotional burden of these decisions do not always agree on a course of action and, furthermore, may be blocked by hospitals and courts from carrying out a particular course of action. While these kinds of cases may not yet be widespread, they have sparked intense debate and raised the consciousness of many families about issues they may face.

In addition to type of impairment, there is variability in the severity of impairment. The degree to which a person with disability is limited in doing activities or functions of daily living (e.g., walking, feeding oneself, and toileting) can be assessed and is called functional status. The lower the person's functional status, the more assistance he or she will need from other people and/or from equipment and devices. Family members are a primary source of this needed assistance (Biegel, Sales, and Schulz 1991; Stone and Kemper 1989). Providing this assistance can create a burden for family caregivers, which may result in physical or psychological symptoms of poor health. For example, parents, especially mothers, experience more depression when their children with disabilities have lower functional status (Patterson, Leonard, and Titus 1992; Singer et al. 1993). For elderly caregivers, physical strain may be a limiting factor in how much and for how long assistance can be provided for the disabled individual (Blackburn 1988).

The age of the person when the disability emerges is associated with different impacts on the family and on the family's life course, as well as on the course of development for the person with disability (Eisenberg, Sutkin, and Jansen 1984). When conditions emerge in late adulthood, in some ways this is normative and more expectable. Psychologically it is usually less disruptive to the family. When disability occurs earlier in a person's life, this is out of phase with what is considered normative, and the impact on the course of development for the person and the family is greater. More adjustments have to be made and for longer periods of time.

When the condition is present from birth, the child's life and identity are shaped around the disability. In some ways it may be easier for a child and his or her family to adjust to never having certain functional abilities than to a sudden loss of abilities later. For example, a child with spina bifida from birth will adapt differently than a child who suddenly becomes a paraplegic in adolescence due to an injury.

The age of the parents when a child's disability is diagnosed is also an important consideration in how the family responds. For example, teenage parents are at greater risk for experiencing poor adaptation because their own developmental needs are still prominent, and they are less likely to have the maturity and resources to cope with the added demands of the child. For older parents there is greater risk of having a child with certain disabilities, such as Down syndrome. Older parents may lack the stamina for the extra burden of care required, and they may fear their own mortality and be concerned about who will care for their child when they die.

The course of the child's physical, psychological, and social development will forever be altered by the chronic condition. Since development proceeds sequentially, and since relative success at mastering the tasks of one stage is a prerequisite for facing the challenges of the next stage, one could anticipate that the earlier the onset, the greater the adverse impact on development (Eisenberg, Sutkin, and Jansen 1984).

There are many ways in which the accomplishment of development tasks is complicated for persons with disabilities. This, in turn, has an effect on their families as well as on which family roles can be assumed by the person with disability (Perrin and Gerrity 1984). For example, in infancy, disability may frighten parents, or the infant may be unresponsive to their nurturing efforts such that attachment and bonding necessary for the development of trust are compromised. The parent may feel inadequate as a caregiver, and parenting competence is undermined. For a toddler, active exploration of the social environment, needed to develop a sense of autonomy and self-control, may be restricted because of the child's motor, sensory, or cognitive deficits. Parents, fearing injury or more damage to their young child, may restrict their child's efforts to explore and learn, or they may overindulge the child out of sympathy or guilt. If other people react negatively to the child's disability, parents may try to compensate by being overly protective or overly solicitous. These parent behaviors further compromise the child's development of autonomy and self-control.

As children with disabilities move into school environments where they interact with teachers and peers, they may experience difficulties mastering tasks and developing social skills and competencies. Although schools are mandated to provide special education programs for children in the least restrictive environment and to maximize integration, there is still considerable variability in how effectively schools do this. Barriers include inadequate financing for special education; inadequately trained school personnel; and, very often, attitudinal barriers of other children and staff that compromise full inclusion for students with disabilities. Parents of children with disabilities may experience a whole set of added challenges in assuring their children's educational rights. In some instances, conflict with schools and other service providers can become a major source of strain for families (Walker and Singer 1993). In other cases, school programs are a major resource for families.

Developmental tasks of adolescence— developing an identity and developing greater autonomy—are particularly difficult when the adolescent has a disability. Part of this process for most adolescents generally involves some risk-taking behaviors, such as smoking and drinking. Adolescents with disabilities take risks too, sometimes defying treatment and procedures related to their condition, such as skipping medications or changing a prescribed diet. Issues related to sexuality may be particularly difficult because the person with disability has fears about his or her desirability to a partner, sexual performance, and worries about ever getting married or having children (Coupey and Cohen 1984). There is some evidence that girls may be at greater risk for pregnancy because of their desire to disavow their disability and prove their normalcy (Holmes 1986). Teens with mental impairment may be subjected to sexual exploitation by others.

When disability has its onset in young adulthood, the person's personal, family, and vocational plans for the future may be altered significantly. If the young adult has a partner where there is a long-term commitment, this relationship may be in jeopardy, particularly if the ability to enact adult roles as a sexual partner, parent, financial provider, or leisure partner are affected (Ireys and Burr 1984). When a couple has just begun to plan a future based on the assumption that both partners would be fully functional, they may find the adjustment to the disability too great to handle. The development of a relationship with a significant other after the disability is already present is more likely to lead to positive adjustment. Young adulthood is that critical transition from one's family of origin to creating a new family unit with a partner and possibly children. When disability occurs at this stage, the young adult's parents may become the primary caregivers, encouraging or bringing the young person home again. The risk is that the developmental course for the young adult and his or her parents may never get back on track. This is influenced in part by the extent to which there are independent living options for persons with disabilities to make use of in the community.

When the onset of disability occurs to adults in their middle years, it is often associated with major disruption to career and family roles. Those roles are affected for the person with the disability as well as for other family members who have come to depend on him or her to fulfill those roles. Some kind of family reorganization of roles, rules, and routines is usually required. If the person has been employed, he or she may have to give up work and career entirely or perhaps make dramatic changes in amount and type of work. The family may face a major loss of income as well as a loss in health and other employee benefits. If the person is a parent, childrearing responsibilities may be altered significantly. The adult may have to switch from being the nurturer to being the nurtured. This may leave a major void in the family for someone to fill the nurturing role. If the person is a spouse, the dynamics of this relationship will change as one person is unable to perform as independently as before. The partner with the disability may be treated like another child. The sexual relationship may change, plans for having more children may be abandoned, lifestyle and leisure may be altered. Some spouses feel that their marital contract has been violated, and they are unwilling to make the necessary adjustments. Children of a middle-aged adult with a disability also experience role shifts. Their own dependency and nurturing needs may be neglected. They may be expected to take on some adult roles, such as caring for younger children, doing household chores, or maybe even providing some income. How well the family's efforts at reorganization work depends ultimately on the family's ability to accommodate age-appropriate developmental needs. In families where there is more flexibility among the adults in assuming the different family roles, adjustment is likely to be better.

The onset of disability in old age is more expectable as bodily functions deteriorate. This decline in physical function is often associated with more depression. An older person may live for many years needing assistance in daily living, and the choices of where to get that assistance are not always easily made. Spouses may be unable to meet the extra caretaking needs indefinitely as their own health and stamina decline (Blackburn 1988). Adult children are often in a position of deciding where their elderly parent or parents should live when they can no longer care for themselves. Having their parents move in with them or having them move to a nursing home or seniors' residence are the most common options. However, each of these choices carries with it emotional, financial, and social costs to the elderly person as well as to his or her adult children. This responsibility for elderly parents is not always shared among adult children. Adult daughters are more likely than adult sons to be involved in providing direct care for their elderly parents (Brody 1985). The many decisions and responsibilities can be sources of tension, conflict, and resentment among extended family members. This period of disability in old age can go on for a very long time, given the medical capability to sustain life. While the practice is still not widespread, more elderly people are preparing a living will, which is a legal document preventing extraordinary means from being used to prolong their lives.