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Early intervention!!

Early Intervention!!

In every state, parents and professionals are working together to carry out the mandate of PL 99-457 (the Education of the Handicapped Act Amendments of 1986) and make the dream of early intervention services a reality for all children and families in need. This new federal mandate not only encourages the development of early intervention services for children, but it also acknowledges the central role of families in early intervention by mandating a family service plan rather than a plan for the child in need.

For many years, parents and professionals shared a dream that whenever a baby or a young child was found to have a disability or serious medical condition, an array of services would become available to the child and the family. Gradually, far too gradually for too many children and families, various early intervention services evolved; different service models appeared in different communities. Soon, the children who participated in these early intervention programs began to do better than had been expected--they were outdoing the pessimistic predictions of the textbooks. Many different kinds of programs, all called early intervention programs because they "intervened early," seemed to contribute to changes for the better. Even tough-minded fiscal decision-makers began to appreciate the value of investing in services early in the life of a child in order to save larger sums in the future.

In the context of creating or expanding programs, parents of children with disabilities can now speak out--just like all other parents--and say, "I want the best for my child." Unfortunately, as all parents of all children quickly learn, there are many different viewpoints about what is best today; and whatever may be considered best today, may not be best for long. Accordingly, parents and professionals have the extraordinary challenge of deciding what kinds of interventions are best for which children and which families.

In the recent past, some professionals have been troubled by our editorial approach to early intervention because it included sharing with our readers the fact that our knowledge about early intervention is limited. Thus, while we are convinced that early intervention programs can play a major role in helping children and families, we want to share our perspectives.

We share the excitement and optimism about how, at long last, children in need can have access to opportunities to grow and develop from very early in their lives. We are also excited because as these programs are developed and carried out, our knowledge will expand. Nonetheless, our excitement is tempered by caution because there are few life experiences that are more painful than shattered expectations and parents of young children with disabilities have already experienced shattered expectations at least once.

WIDE RANGE OF SERVICES

The term early intervention can cover a wide range of services, delivered by differently trained people, in a variety of settings, to children with many different kinds of needs, who are members of different kinds of families, living in different kinds of communities. As each state proceeds in developing its plans, different programs will evolve. Already, in different states, different agencies have been designated to coordinate efforts. Hopefully, there will be systematic ways to evaluate which state programs are the most effective so that we all can learn and change.

NEEDS OF INFANTS

Although we cannot be certain about exactly which specific intervention is best for each child in need, a great deal is known about the development of all young children and families. First, when newborns have acute medical conditions that can impair development or even threaten life itself, early treatment is essential. The law addresses this explicitly.

Second, all new babies need warmth and love as well as nourishment; love that is expressed by being held closely and lovingly by parents. We also know that sensory input via sight, sound, smell and touch is important for the development of all babies. Accordingly, the sooner it is possible to intervene to improve impaired vision or hearing, or to begin special sensory stimulation programs to compensate for sensory deficits which cannot be remedied, the better off the child will be.

NEEDS OF PARENTS

Almost all first time parents require on-the-job training. Parents of children with disabilities may need some special training to meet an infant's needs because they may be fearful of hugging or lifting a fragile baby, or because they do not know how to communicate with a baby who cannot see or hear. Similarly, when a baby looks different or is known to be different or sick, parents may feel uncertain about how to interact with the baby. These parents can learn special techniques for loving, feeding, lifting or playing with their child. Such learning helps parents and children interact more enjoyably and helps parents feel good about being able to do something.

Whenever parents describe their first experiences learning about a child's disability (whether it is at birth or later), almost all parents state how valuable it would have been if they had met an experienced parent. Almost all parents who have had such opportunities feel that networking with experienced parents was helpful. Here, as in so many ways, parents of children with disabilities are no different than other parents--they enjoy opportunities to talk about parenting experiences with other parents. While almost all parents find such communication with "peers" to be valuable, it is difficult to answer a scientific question that asks "exactly how will the child benefit because parents communicated with other parents?"

We also know that all parents of all children need some time off from parenting to enjoy their adult lives. Thus, we can state confidently that parents of children with disabilities need respite care services. But we cannot demonstrate exactly how a particular "doseage" of respite care services will contribute to certain specific measurable improvements in the child or the family.

We also know that caring for any child can be stressful. In recent years, we have learned a great deal about how stress can affect health. Accordingly, we can state that reducing stress can help parents stay healthier. But will the decreased stress for parents or even the decreased likelihood of physical or emotional illnesses bring about specific, measurable changes in the child?

From the moment of birth, children and parents affect each other's behaviors. For example, it is clear that all parents need "messages" from a baby that the parents' efforts are worthwhile--like a tiny smile. With such experiences, parents begin to feel more confident about their parenting skills. Whenever a baby is less responsive, parents get less feedback and are more likely to feel less competent and more frustrated as parents.

WHEN TO "INTERVENE"

We also know that early is not always better than later in terms of when in the life of a child certain intervention strategies should be initiated, and we know that sometimes intervening too early can be harmful. Holding back can be especially troubling to parents and professionals who want to get started doing something helpful.

HOW MUCH TO "INTERVENE"

In our society, it is also difficult to teach the concept that more is not always better. Two hours of therapy (intervention), or even eight hours, each day may not be as helpful as one hour. The "common sense" notion that a higher "dose" of care is better can be wrong. This fact alone greatly complicates the already uncertain decisions about choices of types of therapies. Adding the question of when is the most effective time to the question of how much, it becomes clearer why people are asking very challenging questions about how to proceed so that government officials charged with funding programs will be satisfied that monies are spent effectively.

FAMILY SERVICE PLAN

The concept of a Family Service Plan (FSP) is a major change in perspective for some people in early intervention. For programs that have acknowledged the critical role of parents and have worked to develop partnerships with parents, the requirement of a family service plan is likely to fit in relatively comfortably. In contrast, for other programs, or for programs yet to begin, the requirement of an FSP is totally new.

For us at EXCEPTIONAL PARENT working closely in partnership with families has always been our focus, so we welcome the concept of a family service plan. We have always been committed to the rights of parents to participate in the development of a program for a child and for the right to approve plans that are developed.

Yet we also express caution. The development of a FSP can be a powerful tool for empowering and supporting the loving efforts of parents, grandparents, and brothers and sisters. Or it can be an invasive and destructive weapon that harms families by zealously imposing standards or requirements that originate in the needs of professionals.

Some professionals know a great deal about families and how to work cooperatively with them; others do not. Some professionals, still clinging to the outdated concept that the arrival in a family of a child with a disability is like a contagious disease because it always causes some kind of sickness in the family, will bring an inappropriate perspective to the planning table. Other professionals may be unaware of the importance of cultural and religious values in the lives of families and, in that way, present an inappropriate agenda.

Another common dilemma when parents and professionals meet is the tendency to minimize the potential of traditional family and community supports--friends, neighbors, relatives, religious and civic organizations and other "nonprofessionals." All families in today's society need support; but not all families require "professional" support systems because they are already connected or can become connected with caring people and groups outside of the boundaries of professional care services.

READINESS

The FSP is to be developed as soon as possible. However, families will vary in their readiness and ability to work with professionals. While professionals may confidently discuss the long term needs of the child, the family may not be able to look ahead because all its energies are consumed by addressing current needs. In addition, the individual needs of family members, as well as the professionals' views of the needs of the child will vary. And these will change as the child (and the parents) grow and change.

We believe that families can be offered a "menu" of services available in the community which carefully explains the plusses and minuses of each service. Then, parents, listening to the thoughtful advice of professionals and other parents, can choose from the menu and try out different selections with the assurance that their choices are for the short term and can be changed.

CASE MANAGERS

Finally, the law calls for the appointment of a case manager--a professional who can work with parents and professionals to create an integrated and flexible approach that informs, involves, respects, and empowers parents. Further, the case manager can act as an advocate for children and families when people or agencies seem to get in the way.

We wholeheartedly support the concept of a case manager with two specific cautions. First, we are concerned about who will be signing the paychecks of the case manager. Case managers, like all other people, need to protect their own security while they advocate for others. If a case manager's employer is also involved in the delivery of services to the child and the family, the case manager may be forced to make compromises that are not in the best interest of the child or the family but rather are in the interest of personal job security. Second, many parents are capable or can become capable of being their own case managers. Many parents have been doing just that for many years. Thus, there need to be opportunities for parents to become "professionals" case managers for themselves--and even paid accordingly!

We congratulate all those who have played a role in the development and passage of 99-497. It is a remarkable piece of legislation that has extraordinary potential. It gives all of us a great deal to think about and a great deal to accomplish.
COPYRIGHT 1989 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1989 Gale, Cengage Learning. All rights reserved.

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Author:Schleifer, Maxwell J.; Klein, Stanley D.
Publication:The Exceptional Parent
Article Type:editorial
Date:Jan 1, 1989
Words:2012
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