Family support

Children Today, March-April, 1991 by Naomi Karp, Valerie Bradley

These are the feelings expressed by some of the Iowa families who participate in the State's Family Support Subsidy Program (Agosta, et al., 1990). This program is but one example of what States are doing to enable families to raise their children with developmental disabilities at home, in non-restrictive, nurturing environments. The purpose of this article is to present a summary of how family support programs began, how they are working today, and in what direction they should be going.

The Evolution of Family Support

Parents of children with disabilities, frustrated by the lack of opportunities afforded their family members, have historically taken on the role of advocate to secure the services they need. Most recently, their advocacy has been directed at the development of comprehensive family support services that help parents nurture their child at home and are delivered in their home communities. Their call for developing and/or expanding family supports is based on the following assumption:

Children, regardless of the severity of their disability, need families and enduring relationships with adults in a nurturing home environment. All children, with and without disabilities, need families and family relationships in order to develop to their fullest potential (Syracuse University, 1987).

Few would dispute the idea that children belong in families. However, only recently has public policy recognized that persons with disabilities are

entitled to the same basic human rights as other citizens and that first among these is the right to be part of a family. This represents a clear break from earlier times when families were strongly encouraged by professionals to institutionalize children born with severe disabilities (McKaig, 1986).

A new way of thinking has slowly become evident in many State-funded, community-based programs for children with developmental disabilities. The change is based on the broad concept of "family support." In 1972, the Commonwealth of Pennsylvania developed one of the first family support programs. In the late 1970s, many advocates and administrators realized that the move towards community integration and the enactment of Public Law 94-142, the Education of All Handicapped Children Act, were resulting in large numbers of children living with their families, and that supports and services would have to be available in communities in order for families to thrive and be successful. Skarnulis urged policymakers and administrators to "support and not supplant families" so that their sons and daughters with developmental disabilities could live, work, go to school, and play in their own homes, in their own neighborhoods (Knoll, et al., 1990). Families agreed with this philosophy and began advocating for States to operationalize the "support and not supplant" ethic.

Definition and Characteristics of

"Family Support"

In response to the diligent, widespread lobbying efforts by families and advocates, States began developing a variety of programs and services which fall under the broad definition of "family support." The term is best defined as an array of practical supports that are determined by individual family needs. Ideally, family support is flexible, focuses on the entire family, changes as family needs change, encourages families to use natural community supports, and provides a convenient and central access to services and resources (Knoll, et al., 1990; United Cerebral Palsy Associations, 199). Family supports should make a positive difference in the lives of all members of the family.

Families want to raise their children at home and are only asking for "whatever it takes" to make that possible. Parents seek those supports that will enable them to devote their energies to being parents. They are calling on the State to recognize support for the family as an entitlement which affirms that the family is indeed the cornerstone of our society and that people with disabilities are to be valued.

They base this call on the fact that support for families is the most cost effective service the State can provide. By supporting families and aiding the integration of children with disabilities into their communities and neighborhood schools, governments can shape the future demand for adult services so that there is greater reliance on existing community resources rather than on more expensive specialized settings (Knoll, et al., 1990).

Agosta and Bradley (1985) found that during the childhood years, over 90% of persons with disabilities live with their families. However, the realities of increased numbers of working mothers, more single parent families, smaller family size, and the lack of available extended families indicate that families now may have fewer resources at their disposal to provide the care required by their family member with a disability. These demographic changes, coupled with the fact that children with severe, multiple disabilities and complicated medical conditions are surviving past infancy and living at home, point to the need for more and better supports for families. Without them, families will not succeed.