The importance of families

The vignette of Margarita and her family underscores the reason it is important for OT practitioners to understand family systems. Box 2-1 contains the key reasons for using a family-centered approach in early intervention when working with young children who have disabilities.

Families have the most significant environmental influence on a young child’s life and development. As evident in the case study presented above, the majority of Margarita’s time is spent with her family. If the family members are not convinced of the benefits of therapy or are unable to find time to carry out the intervention plan, optimal improvement in Margarita’s case is unlikely to occur. As interventionists, OT practitioners enter children’s lives for relatively brief periods. Family members are the “constants” in most children’s lives.

The OT practitioner may function in two distinct roles in his or her involvement with a family—prescriptive and consultative. When working directly with the child, the OT practitioner functions primarily in the prescriptive and directive role; when working with the family, he or she functions primarily in the consultative role. Consulting with the family on the possibility of achieving the desired goals for the child and for the family builds collaboration and trust, which are key ingredients for intervention success with families.

Interventions with children have an inevitable impact on the life of the family; therefore, interventions are most effective when the family is consulted and invests in the development of the treatment plan. Margarita’s story reveals the importance of considering the whole family with regard to the intervention plan. It also illustrates the advantages of the occupational therapist functioning in a family-centered, consultative role, one that acknowledges and supports a family’s central function in the design and implementation of intervention plans. Margarita’s therapist learned the importance of this concept when she recalled her initial failed attempt to help the family institute a toilet training program and again while introducing the idea of preschool for Margarita.

The family-centered approach is also the focus of many current laws and health care delivery models. Public Law 99-457, which was passed in 1986 (IDEA, Part C), is considered revolutionary because of its emphasis on the central role a family plays in interventions with young children. This law and its subsequent interpretations have altered the way in which services for young children are planned and delivered. Some of the highlights of the early intervention component of the law include the following: (1) families are mandated co-leaders on state-level advisory boards that make recommendations about the way in which service systems are designed; (2) family concerns, resources, and priorities guide the development of individual intervention plans; (3) families play an important role in children’s assessments and evaluations; and (4) families have certain rights to confidentiality, record keeping, notification, and other procedures related to the programs and agencies that serve their children. The law ushered in additional changes that ultimately benefit families, such as promoting interdisciplinary and interagency collaboration. The importance of collaboration among agencies and disciplines became apparent when numerous stories surfaced about various health care professionals providing conflicting advice and recommendations to families with regard to their children with disabilities.⁶

Professional organizations, including the American Occupational Therapy Association (AOTA), have identified particular areas of competency and recommended certain guidelines to emphasize the importance of practitioners having the skills and knowledge necessary to work effectively with families.¹ The dramatic changes in the relationship between families and professionals, which were catalyzed by Public Law 99-457, as well as the increased focus on the importance of families in all human service organizations did not develop overnight. The existing workforce has had to develop new collaboration and communication skills. University and community college training programs have had to retrain their faculties and upgrade their curricula in order to prepare students adequately for the newly defined pediatric roles (Box 2-2).³ Professional organizations have supported the changes by creating recommended practice guidelines and areas of competency.

As mentioned previously, policies and legislation passed in the last 15 years have affected service delivery models and recommended OT practices. The resulting changes have included emphasis on the following approaches to service delivery.

• Interdisciplinary and family-centered approaches are used when planning and implementing interventions.

• Children who have disabilities are included in regular educational settings.

• Therapists act as consultants, providing pediatric treatment that is integrated into the children’s regular routines and natural environments instead of using “pull out therapy”* (Figure 2-1).