Being a family. The experience of raising a child with a disability or chronic illness

This chapter examined the experiences of families of children with a variety of specialized needs, families who, as pioneers in family-centered, community-based care, are defining the future of services. It also looked at the services that are supposed to support the families in their efforts. On one hand, we have exposed the reader to the tension between traditional approaches to services for children with special needs and the expressed needs of families for coherence and empowerment. On the other hand, the data testify to the development of a new definition of the parent-professional relationship as individual professionals and select service systems around the country strive to work out what it means to support families. When the testimony of these families is carefully read, we are left with an impression of a schizophrenic system of public and private supports for home care for children with severe disabilities and specialized health care needs. The official rhetoric affirms the primacy of the family, and yet the experience of these families is otherwise. Again and again, the families told of benefits managers, case managers, discharge planners, social workers, program administrators, special educators, and the like who implied that parents were out to "milk the system." This attitude was conveyed even in dealing with entitlements and plans to which the parents had long contributed. Families were treated as beneficiaries of benevolent charity for which they should be grateful. Families, already struggling to come to terms with their child's impairment and the care demands associated with it, find themselves stigmatized, impoverished, and degraded. In a society of rugged individualists they are forced to ask for help. That in itself is more than some of the parents can deal with. It should be clear that these parents are not asking for charity. No one here is out to "milk the system." They are simply seeking support to meet some of the extraordinary demands associated with raising their children. As parents, they are not looking for the state to assume their responsibilities. Rather, they seek supports that will enable them to devote their energies to being parents. Their testimony suggests the need for states to recognize support for the family as an entitlement that affirms that the family. They base this call on the fact that support for families is the most cost effective service the state can provide.(ABSTRACT TRUNCATED AT 400 WORDS)