Support for Family Involvement

Parents: Advocating for Needed Change

For decades, parents of exceptional children have advocated for equal access to educational opportunities for their children, and they have done so with impressive effectiveness. Parents played the primary role in bringing about litigation and legislation establishing the right to a free and appropriate public education for all children with disabilities.

The first parent group organized for children with disabilities was the National Society for Crippled Children, formed in 1921. The United Cerebral Palsy Association, organized in 1948, and the National Association for Retarded Citizens (now called The Arc), organized in 1950, are two national parent organizations largely responsible for making the public aware of the special needs of children with disabilities. The Learning Disabilities Association of America (LDA), formed in 1963, also organized by and consisting mostly of parents, has been instrumental in bringing about educational reform. Parent members of The Association for Persons with Severe Handicaps (TASH), founded in 1975, have been forceful and effective advocates for family-focused educational services and the inclusion of students with severe and multiple disabilities in neighborhood schools and general education classrooms. Many parent organizations continue today to advocate for effective education, community acceptance, needed services, and the rights of individuals with disabilities.

Families have the greatest vested interest in their children and are usually the most knowledgeable about their children’s needs. The developers of a highly regarded program for planning and implementing inclusive educational programs for students with disabilities agree. They present four powerful arguments for viewing active family involvement as the cornerstone of relevant and longitudinal educational planning:

• Families know certain aspects of their children better than anyone else does. As educators, we must remind ourselves that we spend only about half the days of the year with our students, seeing them less than a third of each of those days. Non-school time may provide key information that has educational implications, such as the nature of a student’s interests, motivations, habits, fears, routines, pressures, needs, and health.
• Families have the greatest vested interest in seeing their children learn. In our professional eagerness to help children learn, we sometimes convey the message to parents that teachers care more about children than parents do. Of course, this is rarely the case.
• The family is likely to be the only group of adults involved with a child’s educational program throughout her entire school career.Over the course of a school career, a student with special educational needs will encounter so many professionals that it will be difficult for the family to remember all of their names. Some of these professionals will work with the child for a number of years, others for a year or less. Professionals are encouraged to build upon an ever-evolving, family-centered vision for the child rather than reinventing a student’s educational program each year as team membership changes.
• Families must live with the outcomes of decisions made by education teams all day, every day. People rarely appreciate having someone else make decisions that will affect their lives without being included in the decision-making. As professionals making decisions, we must constantly remind ourselves that these decisions are likely to affect other people besides the child and have an effect outside of school. (Giangreco, Cloninger, & Iverson, 1998, pp. 19–22)

Educators: Striving for Greater Effectiveness

To meet the special needs of children with disabilities, educators must expand the traditional role of the classroom teacher. This expanded role demands that we view teaching as more than instructing academic skills in the classroom. Today’s special educator attaches high priority to designing and implementing instructional programs that enable students with disabilities to use and maintain academic, language, social, self-help, recreation, and other skills in school, at home, and in the community. As part of their home and community life, children may participate in some 150 different kinds of social and physical settings (Dunst, 2001). The large number of non-school settings in which children live, play, and learn illustrates two important points. First, the many different settings and situations illustrate the extent of the challenge teachers face in helping children use newly learned skills throughout their daily lives. Second, the many different settings and social situations children experience in home and community provide extended opportunities for learning and practicing important skills. It is clear that to be maximally effective, teachers must look beyond the classroom for assistance and support, and parents and families are natural and necessary allies.

Extensive evidence shows that the effectiveness of educational programs for children with disabilities is increased when parents and families are actively involved (e.g., Cronin, Slade, Bechtel, & Anderson, 1992; Guralnick, 1997; Hardin & Littlejohn, 1995; Keith et al., 1998). At the very least, teachers and students benefit when parents provide information about their children’s use of specific skills outside the classroom. But parents can do much more than just report on behavior change. They can provide extra skill practice and teach their children new skills in the home and community. When parents are involved in identifying what skills their children need to learn (and, just as important, what they do not need to learn), the hard work expended by teachers is more likely to produce outcomes with real significance in the lives of children and their families.

Legislators: Mandating Parent and Family Involvement

Parent involvement was a key element in the Education of All Handicapped Children Act (P. L. 94–142), the original federal special education law. Each reauthorization of the law has strengthened and extended parent and family participation in the education of children with disabilities. For example, Congress reaffirmed and made clear its belief in the importance of parent and family involvement in the introduction to IDEA 1997: “Over 20 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by . . . strengthening the role of parents and ensuring that families of such children have meaningful opportunities to participate in the education of their children at school and at home” (U.S.C 601[c][5][B]).

Parent participation in the form of shared decision making is one of six basic rules, or principles, of IDEA that form the general framework for carrying out national policies for the education of children with disabilities. IDEA provides statutory guidelines that schools must follow with parents of children with disabilities with regard to referral, testing, placement, and program planning and evaluation. In addition, the law provides due process procedures if parents believe that their child’s needs are not being met.

We have identified three factors responsible for increased parent and family involvement in the education of children with disabilities: parents want it, educators know it’s a good idea, and the law requires it. But the most important reasons why families and educators should strive to develop collaborative partnerships are the benefits to the child with disabilities:

• Increased likelihood of targeting meaningful IEP goals
• Greater consistency and support in the child’s two most important environments: home and school
• Increased opportunities for learning and development
• Access to expanded resources and services