The Individuals with Disabilities Education Act (IDEA): Past and Present
This year, which has seen the reauthorization process of the Individuals with Disabilities Education Act (IDEA), has also witnessed national activity undertaken by parents, consumers, policymakers, and professionals in education and related fields who have assessed what has and has not worked concerning IDEA. Each group and individual seemingly has a different perspective and recommendations for improvements. Since the enactment of IDEA, the education field has been experiencing the pendulum sway towards full inclusion for all students with disabilities and the trend to pull away from recognizing the value of students with visual impairments receiving specialized or related services, expanded core curriculum, and special school placements. The reality is that many children with disabilities in full inclusion settings are sitting in regular education classrooms, not receiving the special education needed to be actively learning or participating and having full access to the general curriculum. For example, the position of the National Association for Parents of Children with Visual Impairments (NAPVI) is to protect the language in IDEA providing for "a full array of placement options and a full continuum of services," from special schools for the blind, special classes, regular classes, instruction in hospitals, institutions, and at home. We recognize the value of all of these settings, depending on the individual educational needs of each student, and realizing that students' educational needs may vary over time with their development and possible changes in vision. NAPVI also supports the inclusion of the expanded core curriculum and related services that meet the special needs of students with visual impairments in their Individualized Education Programs (IEPs).
But one thing we can all agree on: A change in the political party and administration that holds national dominance affects the direction of special education in the United States. Basic principles that are the foundation of IDEA and that have provided entitlements for students and parents for over 25 years are being threatened by individuals and government agencies whose philosophy and goals differ, often markedly, from those that have prevailed in the past. These threats include weakening of parental involvement and procedural safeguards for families under the guise of "alleviating the stress in disagreements between schools and parents;" diminishing the responsibility of school administrators for students with disabilities (thus putting more of the burden on families) under the auspices of the Paper Reduction Act (the "paper" they want to be eliminated has parent and student rights and notification attached to it); and eliminating short-term objectives from students' IEPs that have helped to highlight specific areas in need of immediate remediation and provide immediate feedback about what is or is not working.
The world is watching
IDEA is the special education law in the United States that entitles students with disabilities to a free and appropriate public education. Its effect on our society has been far reaching and profound. The implementation and enforcement of IDEA have not only provided the impetus for students with disabilities to be integrated and accepted in schools and universities but have also influenced integration and acceptance of people with disabilities in the workplace and within society as a whole.
I have learned from my work with parents and with vision programs and associations in other countries that the world is watching how the United States handles its special education policy. Many countries do not have a special education law ensuring that students with disabilities receive an education. The United States is a pioneer in special education policy and is one of the only countries that has this protection; the concept of special education policy is just catching on in some countries and is not even conceived of in others. In some countries without special education policy, students with disabilities are educated in residential institutions that keep them separated from society. These students usually live very far away from home, making it difficult for families to be involved in their education and their lives, which often results in a disconnected relationship between parents, the school, and the child with the disability. Many children with disabilities who don't attend a special residential school live at home and do not receive any educational services. At the same time that it can be common for families not to accept a child with a disability, families often take on the role of being the protector and provider for the child and into adulthood. Integration of people with disabilities in employment is usually also missing in these countries.
I have observed innovative specialized programs for visually impaired students in some countries even though special education is not mandated by their governments. These programs struggle to stay funded, and parents, advocates, and service providers have no law to back them up when they have problems obtaining needed services.
25 Steps Forward, 10 Steps Backwards?
Although we have experienced over 25 years of forward movement in special education in the United States and are perceived as a role model for special education around the world, we are not protected from going backward. Parents and advocates continually have to fight policy changes that threaten to eliminate the basic principles that IDEA is built on and that make this law so instrumental in establishing and preserving the civil rights of students with disabilities. At the same time that we are managing the tension of maintaining our progress toward high-quality specialized education for students with disabilities, we are facing the challenges to its implementation: a shortage of teachers of visually impaired students and orientation and mobility specialists to support the itinerant and resource room models of the public school system; a lack of access to the general curriculum and adequate accommodations and materials for students with visual impairments in a timely manner with their sighted peers; and the varying quality of vision services and accommodations from school district to school district, depending on available resources and knowledge.
The parent solution
One way to marshal the resources for all these battles is to harness the power of parents. In my experience working with parents of children with visual impairments in the United States I am continually surprised that parents don't realize their significant role on the IEP planning team and in obtaining the specialized services to which their children with visual impairments are entitled. NAPVI is taking the lead in trying to educate parents to be active participants in their children's IEP planning processes and to be equal partners with service providers to ensure that their children receive the services they need. NAPVI offers parent education workshops about IDEA and how it pertains to students with visual impairments, including those with multiple disabilities. We encourage parents to know what types of services to ask to have included in their children's IEPs.
As parents become informed they also become a resource for the educational team. Parent education works! In interviews with parents conducted three to six months after attending a NAPVI IDEA workshop, NAPVI has documented, for example, that parents have been able to obtain related services and braille instruction for their child for the first time by presenting the information to the IEP team gained from the workshop.
When parents recognize their significant role and become informed about the unique needs of their children who are visually impaired, they can become a powerful resource and advocate for their children's development and education. And when parents join together with other advocates, they can become a powerful force to effect change in education policy. Parents were the driving force behind the initial passage of special education legislation almost 30 years ago. As parents and professionals alike, we must take action on issues that affect the lives of our children.
Susan LaVenture, executive director, National Association for Parents of Children with Visual Impairments (NAPVI), P.O. Box 317, Watertown, MA 02272; e-mail: <firstname.lastname@example.org>.
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