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Family-centered programs; directions for the 1990's.

Family-Centered Programs Directions for the 1990'S

In the 80's, parents became central in all decision-making for their child with a disability. In 1975, the important role of the family was embedded in the legislation for the Education of All Handicapped Children Act. Parents were given the right to participate in and approve educational decisions that were going to affect their child.

In updating this law in 1988, the states were able to offer programs for infants and toddlers. A key part of this legislation is the Individualized Family Service Plan. Now, parents not only participate in decision-making, but programs must include services that can enhance the capacity of the family to meet the needs of their child.

This focus on family represents the current stage of a century-long journey in the philosophy of the health and education of individuals in distress. At the turn of the century, medical treatment programs shifted away from a focus on the disease to a focus on the individual. Initially, scientists looked for the cure of diseases and sought vaccines to eliminate them. Later on, the medical scientists began to understand that their job was to put the body of the individual in a position where it could heal itself. They began to understand that the role of medicine and medication was to enhance the body's ability to perform this useful function. Scientists no longer looked for a single germ theory but included the psychological and social factors, particularly the family, in their considerations of treatment.

However, in work with children, it wasn't until the 30's that professionals began to understand the importance of the family environment in the growth and development of children. In the early 30's, the focus on the family was on the mother. When something went wrong, professionals looked at the "inadequacies" of the mother to perform her functions. The 60's ushered in a decade in which there was a broader look at family which began to include fathers and siblings.

As we enter the 90's, we see intense debate about how families should carry out their roles. Much of the debate has centered around the nature of programs -- those that take place within the family environment ("family-centered") and programs that take place within the confines of community settings that serve groups of children and families ("facility-based").

Parents and professionals can readily accept that the family should be at the center of decision-making about their children. However, the implications of this position vary considerably. Each of us has a different vision of what is ideal for the family -- based on quite different backgrounds and upbringings, as well as education and training.

We know that the needs of families and their children change as the children grow older. In general, we believe that young children are best served at home. On the other hand, we believe that each family is unique and has different stresses and coping abilities throughout their life as a family. Therefore, it becomes important that a range of alternatives be available to families as they make decisions based on the total family rather than a single individual.

If parents are to have real decision-making power, they should not have to provide everything within the home. Professionals who insist that home-based, family-centered programs are always the best possible programs for every child and family are not giving parents and families the power to choose between a range of alternatives. Rather, they have narrowed the choices and forced the family to take on responsibilities it may or may not be equipped to fulfill. The new legislation respects the rights of the family to learn about alternatives and make informed decisions.

Parents of children without disabilities have a wide range of opportunities to provide for their children outside of the family. Summer camps, day care centers and private boarding schools are among the choices parents can make. Thus, while some individuals might believe that all services should be provided within the family environment, many parents have had a range of opportunities for a long time. Similarly, while some believe that all children are best served in public schools, generations of families have chosen other alternatives and enrolled their children in schools sponsored by specific religious organizations or in private schools.

We need to see the debate within the context of history. But no matter what position parents and professionals take on this issue, the most important consideration is that the child with a disability and his or her siblings not be caught in the midst of a conflict carried on either between parents and professionals, professionals and other professionals, or parent organizations and parents. We must always remember that when parents and professionals disagree and are unable to resolve and accept differences, the children suffer.

With greater focus on the family, we expect increased debate about the role of the family. We can only hope and expect that this debate will be carried on in a manner which respects a diverse range of views.
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Author:Klein, Stanley D.; Schleifer, Maxwell J.
Publication:The Exceptional Parent
Article Type:editorial
Date:Jun 1, 1990
Words:833
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