The need to have multiple support services available in appropriate form and at the appropriate time is nowhere more apparent than in chronic disability. With advances in biomedical care for defined disease entities comes the need to broaden health care to embrace the total life experience of children and their families (Stein & Jessop, 1982). The “whole child” is the focus of treatment rather than the disease. Russo and Varni (1982, p. 10) have suggested that the child with disease be viewed from an NPAS (normal person-abnormal situation) perspective and that “… in the main, children with chronic diseases are a psychologically normal population.” From such a perspective, impairment or disability becomes part of the life environment with which children and families must cope, and the functional nature of the life problem becomes more important than the disease entity from which it has sprung. Recognition of this has led Stein and Jessop (1982, 1984) and others (Gresham & Labi, 1984) to pursue a noncategorical approach which attempts to focus on dimensions of need or impairment which occur across disabilities, and to measure the functional status of children with disability.
Concern for the functional implications of impairment need not be limited to instances of stabilized chronic disability such as cerebral palsy. The needs for service which are engendered by diseases or disabilities that are cyclical such as multiple sclerosis (Scheinberg, 1983), episodic such as seizure disorder (Terdal, 1981), or progressive such as muscular dystrophy (Lindemann & Stanger, 1981) may also be viewed as transcending the specific disease entities. These and other dimensions will be considered as we discuss typology.
Typology
In formulating this typology, an attempt has been made to identify concepts which are broad enough to allow for generalization, but which have functional implications for the service needs of the child. Thus, the variables described above (stable, progressive, and cyclical or episodic), which characterize the course of disease or disability, are seen as one major dimension. A second major dimension is type of impairment, which includes motor, sensory, cognitive and other (e.g., physical fragility, impaired stamina, emotional impairment). It should be noted that, in this context, emotional impairment does not include the reactive emotional stress which understandably may be experienced and expressed in the course of coping with limitations posed by a disability. It is reserved for those instances in which emotional impairment, such as depression or instability, has been observed with such regularity as to be considered a usual concomitant of the disability or disease.
In addition to the major dimensions of course of disability and type of impairment, certain other aspects of disability are recognized as contributing significantly and differentially to the need for support services. These are: (1) Congenital/Adventitious. Whether the condition is present at or around birth, or is incurred or manifested later in life; (2) Visible/Invisible. Whether the presence of the condition and any concommitant disability are easily perceived in common social situations; and (3) Hereditary/Non-hereditary. Whether the disability has been transmitted by a family member, may be further transmitted by the patient, and whether siblings of the patient may remain at risk. With these dimensions of disability in mind (see Table 1), we turn to the variety and categories of support services which they may require.
Support Services
As is indicated in Table 2, medical therapies will, of necessity, be significantly represented among the services required by persons with physical disability. This presentation will not attempt to delineate the many medical techniques which may be utilized in providing acute care for the physical disorders which fall within the dimensions of the typology presented. Physical or medical treatments which occur on a regular basis within the everyday life context of the patient and family will be delineated. These include: Developmental remediation; Maintenance therapies; and Monitoring. Major emphasis will be placed on those psychological, social, educational, vocational and economic support services which may be critical to the survival of the patient and of the family unit. These will include both the instrumental (e.g., material aid) and expressive (e.g., emotional) support services to which Wallston et al. (1983) have referred. Because services such as vocational assessment, employment assistance and appropriate residential placement are considered critically necessary for many disabled persons, they are included in this presentation of “childhood” support services, even though they may be required only at the adolescent or young adult stage of development.
Browder (1983) has described the need for referral to the multidiscipline team as well as to an array of medical specialists in evaluating developmental disability. In discussing the care provided for children with chronic illness, Pless (1974, p. 125) has listed concern for “… response to illness in relation to behavior, compliance with medical treatment, the actual functioning of the child, the prevention of secondary emotional problems in the child, the prevention of secondary social problems in the child, and the prevention of secondary educational problems in the child.” He goes on to include family impact and notes, “The health of siblings may be more severely affected than the health and well-being of the sick child.” More recently, Turk and Kerns (1985) have stressed the critical role of the family in health and illness behavior, and the mutual influences which play upon the family and the affected individuals within it. This importance of the family system in the treatment of childhood physical disorders is recognized by its placement at the head of our outline of support services.
Family
A Initial Adjustment to Disability
The onset of disability is a period of extreme psychological vulnerability for the family. If the disability is congenital (present at or near birth) this is experienced primarily by the family; if it is adventitious (occurring later in life) it is shared by family and patient. Commonly, shock and denial are involved. The family may have difficulty “hearing” the diagnosis and understanding its implications. This is a time for patient and gentle information-giving and support from professionals who have both technical knowledge and counseling skills. The family may wish to “shop” for a more favorable diagnosis or prognosis, and this may best be handled by facilitating and giving consideration to second opinion consultations. The psychological mechanism of denial is an important protection for family and patient at this time, and it is useful to allow them to assimilate the (negative) long-term implications of the disability slowly, so long as they are obtaining appropriate short-term services. This is a time for frequent contact with professionals and a time when professionals must provide for longer than usual consultative appointments. After initial diagnosis and acute treatment it will be useful to introduce the new family to families and patients who have successfully coped with the disability, and to an organized support group if it is available.
B Coping with Acute Episodes
Care for acute episodes is frequently required at the onset of disability. Thereafter it is needed primarily in illnesses which are cyclical or episodic (hemophilic bleeds, seizures) or in progressive illnesses (such as muscular dystrophy) as they develop into new stages. If hospitalization is needed it may involve separation of patient from family, which is especially difficult for young children. Services are required which allow parents (and sibs if possible) to maintain contact with the patient. This will frequently entail additional support services to maintain ordinary family functions (getting sibs off to school, etc.) while parents are involved in hospital visits. For the older child, provision must be made to carry on educational activities, and if hospitalization is extended, to maintain peer contacts. Relationships with support groups and maintenance of existing religious or social affiliations are important to some families in these crisis times.
C Service Coordination and Advocacy
The goal of advocacy in disability is to represent the needs of patient and family so that available services are obtained in sufficient amount and appropriate form. Coordination, on the other hand, is to see that those services do not negate each other or become excessively burdensome. Doernberg (1978) has painted a graphic picture of the burdens which may be placed on the family when multiple disciplines or service organizations independently generate information and appointment schedules to care for each aspect of the child’s needs. She points out that this burden usually falls on the mother, as the repository of all information and keeper of all appointments, and secondarily on the father who may become the primary caretaker for the non-affected children, further isolating them from the mother. Coordination requires the facilitation of professional and parental decisions about priorities (Is the exercise of walking with braces more important than the efficiency and social acceptability of the wheelchair?) as well as the maintenance of compatible program schedules. Froom (1974) notes that data are needed to determine whether it is rational to expect the primary care physician to have time to assume the responsibility of coordination. Pless and Satterwhite (1972) trained lay persons to carry out certain portions of this role. It is clear that the role can be played by a number of professionals, including social workers and nurses. Ultimately, it is to the benefit of all involved to educate, guide and support family members so that they can provide their own advocacy and coordination to the greatest extent feasible for them, with supplementary help only if and when needed.
D Living with Ongoing Stress of Care
The ongoing stress of providing care is apparent in those disabilities characterized by recurring episodes of acute illness which necessitate acute (often emergency) care. The stress is more insidious and the need for support less apparent, but perhaps even greater, in providing care for a person with a stable, chronic disability which has motor, sensory or cognitive components. To feed a person, help with dressing or toileting, or provide transportation on one occasion appears to be a fairly simple task until it is multiplied by 21 times a week or 365 times a year. It is compounded when cognitive or emotional impairment requires regular supervision lest poor judgment or destructive motivations prevail. Stein and Jessop (1982) have attempted to quantify this stress by developing the Clinician’s Overall Burden Index, a scale which takes into account medical and nursing tasks required, disruption in family routine, deficits requiring compensatory parent behavior, and the burden inherent in the child’s prognosis.
Two kinds of assistance are indicated for ongoing stress of care: (1) a distribution of daily responsibilities among family members, relatives, friends and professional helpers as much as possible; and (2) intermittent respite care for the family. Each has the effect of reducing the burden for the primary care-giver and of introducing a number of care providers, thus promoting the development of social skills and flexibility on the part of the patient. Each kind of assistance can be provided by relatives, support groups, other volunteer organizations, or professionals.
E Living at Risk
- Patient risk. In cyclic or episodic illnesses such as hemophilia or seizure disorder, living at risk becomes a matter of observing realistic precautions without succumbing to anxious overprotection. Kessler (1977) has observed that conservative overprotection is often the easiest and safest approach to care. It is also the way to develop adults who are dependent and unfulfilled. Arriving at an appropriate balance is a matter of having informe...
