Support for Families

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Help for families who have a child with a disability can be broadly divided into three categories: emotional support, information, and federal government programs. Emotional support for family members of children with mild disabilities begins with the immediate family, branches out to grandfamily members and other relatives, and continues with friends and neighbors. Professional support agencies complement "grassroot" networks by providing information and services that train families to help themselves. The stronger their support system, the more capable the family will be in coping with the daily stresses of raising a child with a disability.

Federal programs are primarily targeted at low-income families. Poverty continues to play a significant role in the development of mild disabilities, particularly mild mental retardation and behavior disorders. Children without adequate nutrition and health care are at-risk populations. Environmental threats to normal development include heavy-metal poisoning, child abuse, child neglect, community violence, lack of proper educational experiences at home, and drug abuse. Government programs, when funded properly, can prevent and/or remediate medical and environmental conditions that contribute to mild disabilities.

Emotional Support

Support groups help family members cope with isolation. When family members have an opportunity to discuss their problems with other family members of children with disabilities, they learn they are not alone. Over the years, many self-help, support groups for family members have sprung up in local communities. Sometimes leadership for these groups comes from local professionals; more often family members themselves are the organizers.

Support groups provide family members with an emotional lifeline as they discover that others share their experiences. When family members talk to family members, a sense of comradeship supplants feelings of loneliness and isolation. The Federation of Families for Children's 'dental Health, for example, has assisted many family-run organizations in getting started (Bullock & Gable, 1997). Support groups also help family members learn how to use their int1uence to get the best educational services for their children. Many school systems haw family member advisory councils. These advocacy groups are comprised of family members with disabled children and representatives from the local educational agency. They meet on a regular basis to discuss issues pertaining to delivery of special education services in their community. How much influence a family member advisory council has is largely determined by the political activism of member family members. Some typical activities of a family member advisory council include regular review of special education policy in their school system, dissemination of information to family members of special needs children, and the writing of grants to improve educational services for children with disabilities.

Information

Recent federal legislation has enabled family member-organized groups to develop a national networking system. A federal grant program to support organized family member efforts to provide information and training is the Federation for Children with Special Needs (www.fcsn.org). The purpose of the federation is to disseminate information regarding special needs to family members and families.