According to a recent report released by the United States Census Bureau, about 5% of the 55 million or so school age children in our country have a disability. Apparently, though, they do not talk to their colleagues across the street at the Department of Education. The latter puts the nationwide percentage at more than 13%.
Why is there such a discrepancy, especially when both Federal agencies use the same definitions and work in the same town? This is a critically important question. Millions of individuals rely on multiple government funding sources during the school years; many of the most seriously disabled must do so for the rest of their lives. Government funding, involving billions of dollars, is a numbers game and we should all be concerned when there is an apparent discrepancy of this magnitude that could affect so many.
The Census Bureau is supposed to provide communities with reliable and timely demographic, social, economic, and housing data for the nation, states, congressional districts, counties, and other localities every year. An 8 million student discrepancy offers little in the way of reliable information to anyone for planning at any of these levels.
It is important to remind ourselves that in 1975, Congress finally enacted the long overdue Education for All Handicapped Children Act, which required all public schools that accept federal funds to provide equal access to education for children with mental and physical disabilities. Congress reauthorized the act in 1990, expanded certain programs and renamed it the Individuals with Disabilities Education Act (IDEA). In 2004, Congress again amended the law and further clarified its intended purpose: that states provide a free appropriate education for all students, aged 3 to 21, including children with disabilities.
IDEA defines a "child with a disability" as any child who has: "mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, learning disabilities; and who, by reason thereof, needs special education and related services"
Before a child is deemed eligible for special education under IDEA, the child must be evaluated to determine his or her disability status and educational needs. For each child who is determined to have a disability, an Individualized Education Program (IEP) is written to guide the provision of service.
We should all remember, too, that until the 1970s most children with apparent disabilities were either excluded from public education or served in rigidly segregated settings. Most states operated "hospitals" where individuals with significant disabilities were simply warehoused by the hundreds or thousands, usually with no right to any sort of treatment or education. Some of these facilities were later converted to penal institutions, but only after significant upgrades to elevate them to prison standards.
The eugenics movement was still alive and well in much of the country, involuntary sterilization was part of the intake process and individuals and their families were generally alone and powerless in dealing with this massive national institutional archipelago. Conditions in these facilities were, at best, inhumane and there was little hope of ever leaving. At the time, this passed for state-of-the-art service in virtually every state.
Many state institutions contained nurseries with hundreds of beds, as infants were often permanently placed soon after birth on the advice of physicians. Most would spend the balance or their lives there, absent any sort of plan or prospect for ever leaving. One major institution in Ohio existed solely to house thousands of individuals whose only diagnosis was epilepsy; thousands of others with severe hearing impairment were locked up for life after being misdiagnosed as severely mentally retarded.
It took decades of effort, pleading and litigation by families and advocates to finally begin to change the old ways of doing things and improve the lives of individuals with disabilities, though we still have much more to do.
In addition to special education and related services during the school years, many individuals with the most severe disabilities will require lifelong services ranging from mild supports to complete care.
Accurate data are essential for effective planning and protection of quality services for our most vulnerable fellow citizens. This is especially true as many of the systems for medical care, employment, food and housing, advocacy and protection are either subject to fiscal stress or are in flux as state and federal budgets are increasingly strained.
We all worry about the futures of our children, even in the best of times and circumstances. With all that's going on in Washington these days, long-term certainty and protection for our most vulnerable daughters and sons might be less than promised.
Mixed messages and confusion emanating from Federal bureaucracies are the last things we need as we vigilantly work to protect and improve the lives of the most fragile and vulnerable of our fellow Americans.
Terry Wallace is a Senior Fellow at the Institute for Innovation in Education and Senior Fellow in the Government Policy Research Center at West Liberty University, and serves as a Senior Fellow at the Public Policy Foundation in Morgantown, West Virginia.