Programs And Interventions
The unit of care and support when a person has a disability should be the family or caregiving system, not just the individual (McDaniel, Hepworth, and Doherty 1992). As already noted, the family is both affected by the disability and is a major source of capabilities for responding to it. Within the United States, there is a strong emphasis on family support initiatives as a way to improve the quality of life for people with disabilities (Dunst et al. 1993). Family support has been articulated in the philosophy of the Maternal and Child Health Bureau with regard to children with special health needs: Care should be family-centered, community-based, coordinated, comprehensive, and culturally competent (Hutchins and McPherson 1991).
Family support is also being implemented in early intervention programs for children with disabilities. Federal legislation has mandated states to develop systems of care that integrate health, education, and social services for these children and their families. One component of this legislation calls for an individual family service plan (McGonigel and Garland 1988). There is a meeting of family members and professionals serving the child to develop a comprehensive plan for meeting the needs of the child and the family. Families have a key role in identifying the needs and in identifying their strengths. The intent of the legislation is that parents should be included as an equal partner and full collaborator in deciding about and managing their child's care.
At the heart of the family support movement is the concept of family empowerment, which is defined as enabling an individual or family to increase their abilities to meet needs and goals and maintain their autonomy and integrity (Patterson and Geber 1991). Rather than the helper doing everything for the person being helped, thus maintaining dependency, a process is begun whereby the help-seeker discovers and builds on his or her own strengths, leading to a greater sense of mastery and control over his or her life.
Professionals who provide services to persons with disabilities and their families are being challenged to use this orientation when working with families. Training programs have curricula for developing these skills in new professionals. The emphasis is on the process of providing services and not just the outcomes. Empowerment involves believing in and building on the inherent strengths of families; respecting their values and beliefs; validating their perceptions and experiences as real; creating opportunities for family members to acquire knowledge and skills so they feel more competent; mobilizing the family to find and use sources of informal support in the community; and developing a service plan together and sharing responsibility for it (Dunst et al. 1993; Knoll 1992).
Coordination is another important way by which service delivery can be improved for persons with disabilities. Many persons need a multiplicity of services, and often they do not know what they are eligible for or where to find it. Case management or care coordination is needed to provide this information, to create linkages among these providers, and to assure that families are given complete and congruent information (Sloper and Turner 1992). In some instances, families are able to function as their own case managers, but this requires a high level of knowledge as well as skill in dealing with a bureaucratic system. Furthermore, it consumes a lot of time that many family members would prefer to devote to meeting other family needs. High-quality care coordination can reduce costs, relieve family stress, and improve the quality of life for persons with disabilities.
Another strategy to facilitate family coping and adaptation is linking persons with disabilities and their families together in support programs. There are many support groups for specific conditions (epilepsy, spina bifida, etc.) across the country that meet regularly to provide information and emotional support to those living with disability. In other instances, someone who has lived with the disability for a long time is paired with someone newly diagnosed (Santelli et al. 1993). These informal connections (in contrast to professional therapy services) are particularly effective because people feel they are not alone and are not abnormal in their struggles. There is the opportunity both to give and to receive support, which benefits both sides.
While family members are the primary source for providing care and assistance to a person with a disability, many families are unable to do this for an extended period of time without help from other community sources (Nosek 1993). Many persons with disability now use personal assistance services on a regular basis, which relieves the family of these tasks and allows them to interact with the person with a disability in more normative ways. In addition, personal assistants contribute to an adult's ability to make independent choices about where he or she will live. It makes it possible to transition from the family home and to live as an adult in the community.
Respite care is another community resource that can give families a break from caretaking and prevent total burnout and exhaustion (Folden and Coffman 1993). Respite care is usually provided on an as-needed basis, in contrast to personal assistants, who are usually available every day. When these kinds of resources are available to support families in their caregiving efforts, the families are better able to keep the persons with disability at home, and they do not have to turn to institutional placement.
Many different types of interventions have been developed by psychologists, social workers, and other mental health professionals for families who have members with disabilities (Singer and Powers 1993). These psychoeducational interventions are designed with a variety of goals in mind. They may be designed to support families in dealing with their emotional responses or to teach skills and strategies for managing difficult behavior. Programs may teach techniques for managing stress more effectively, or they may teach family members how to interact with professional providers of services. Some programs target one individual in the family, such as the primary caregiver; in other instances the whole family is the unit of intervention (Gonzalez, Steinglass, and Reiss 1989). Many families with members with disabilities are reluctant to use psychological resources because they cannot find time to go or they may interpret use as a judgment that they are not competent. Generally, persons from lower socioeconomic groups are more likely to view therapy as stigmatizing and so do not participate. Given the evidence that disability increases stress in families and increases the chance that someone will experience psychological or behavioral problems, programs and services to help families cope could prevent many of these secondary problems.
With increasing numbers of persons experiencing disability in the United States and with the reality that families are their primary source of care, it is important that public policies are designed so that families are given the support they need to fulfill this important role. Most families want to provide assistance to their members. However, community resources are also needed to augment their contributions. This kind of family-community collaboration will ultimately contribute to the best quality of life for persons with disabilities, members of their families, and the people in their communities.
See also: ALZHEIMER'S DISEASE; ANXIETY DISORDERS; BOUNDARY AMBIGUITY; CAREGIVING: FORMAL; CAREGIVING: INFORMAL; CHILDCARE; CHRONIC ILLNESS; COMMUNICATION: FAMILY RELATIONSHIPS; DEATH AND DYING; DEMENTIA; DEVELOPMENTAL DISABILITIES; DEVELOPMENTAL PSYCHOPATHOLOGY; ELDERS; FAMILY ROLES; FAMILY STRENGTHS; FAMILY SYSTEM THEORY; GRIEF, LOSS, AND BEREAVEMENT; HEALTH AND FAMILIES; RESPITE CARE: ADULT; RESPITE CARE: CHILD; SCHOOL; STRESS
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JOÄN M. PATTERSON (1995)
BIBLIOGRAPHY REVISED BY JAMES J. PONZETTI, JR.