New center for underserved families with disabilities.

Abstract

419 Brief communication NEW CENTER FOR UNDERSERVED FAMILIES WITH DISABILITIES To the editor: In recent decades, persons with mental retardation and their families have benefited fromnew systemic and interdisciplinary approaches to providing health care, a phenomenon that has dramatically changed the lives of those previously unserved. However, many families remain on the periphery of these approaches because of cultural differences or the challenges associated with geography, age, and disability. Some families affected by developmental disabilities cannot gain access to service delivery; others who achieve access cannot participate fully. These families may be poor minorities; they may live in rural isolated areas; they may be homeless or headed by elderly parents or a parent with a developmental disability. Although the families are often invisible within the health care delivery system, they represent a constituency disproportionately affected by health disorders. To help resolve these problems, the University of Alabama at Birmingham , with a grant from the federal Administration on Developmental Disabilities , has established the National Center for Family Diversity and Developmental Disabilities. The Center's purpose is to develop partnerships among people and programs interested in meeting the needs of families who are often unserved or underserved. The goals for this new national center are to: 1) identify partners (health care professionals, families, "natural helpers" (clergy, teachers, hairdressers, and other community allies who can serve as resources)) across the country who are involved in interventions that successfully mediate barriers and who deliver services to families that are usually underserved; 2) establish a national repository of information about effective family supports; 3) disseminate information to families, professionals, natural helpers, service providers, policymakers, and the general public; and 4) develop culturally sensitive indicators of quality for family support programs. This last item is particularly important. A Native American family may allow a child to decide whether or not to take anticonvulsants rather than exert parental authority. A Hispanic family may give money to a cousin rather than purchase prescribed corrective lenses. To some, these families may appear to be neglecting their children's basic needs. But these and many other health Journal of Health Care for the Poor and Underserved, Vol. 2, No. 4, Spring 1992 420_________________________________________________________ practices may be culturally based, reflecting the primacy of family values or the interpretation of prescriptions as mere suggestions. Underserved families have specific needs that may be nontraditional. A mother with mental retardation who spanks her infant for kicking during feeding, or an exhausted, ill, elderly mother of a 40-year-old daughter with cerebral palsy may need support strategies that are family-centered and individually adapted. The mother with mental retardation may need to learn about basic infant development, not through traditional parenting literature, but with hands-on guidance and with supplemental video or pictorial guides. The elderly mother may need social support and attention to her own health care needs, as well as guidance in planning for her daughter's care (residential, health, social, financial) after the mother can no longer do so. Overwhelmingly, low-income minority families and other families in challenging circumstances have higher-than-average rates of disability, unmet chronic (often severe) physical and mental health problems, difficulty meeting basic needs, limited vocational skills, and poor educational histories accompanied by high levels of illiteracy.17 Systems that are supposed to meet the needs of such families are often fragmented, complex, and confusing to families. Professionals in these systems rarely understand the "big picture" and often become discouraged by the same barriers that stand in the way of their clients. Despite these barriers, however, we know that programs and people throughout the country are addressing the needs of underserved families, including families with developmental disabilities. Such endeavors are often locally funded, appended to other projects, and led by busy clinicians who do not communicate their discoveries and dilemmas through national publications and presentations. Innovative strategies that are regularly developed and implemented for one community may target needs common to other communities . Healthy People 2000s has noted that no national process exists to identify significant gaps in the nation's health promotion efforts, particularly for people who are minorities, low-income, and disabled. This gap impedes cooperation and creativity that would result in progress...