When I first started in medicine, not so very long ago (in geologic time!), children with handicapping conditions were often denied life-saving surgery or a chance to be educated, and were placed in warehouse-like institutions. Bill Zimmer, who has had a distinguished post-retirement career teaching dance to adults with handicaps, loaned me a copy of an Australian film, “A Test of Love,” the true story of Annie, a “warehoused” child with cerebral palsy and normal intelligence, rescued by a crusading therapist and helped to a nearly normal life.
New Mexico’s Los Lunas Hospital and Training School resembled the Australian school in the film — it had well-meaning attendants, but it was a warehouse nevertheless. It was closed in the mid-1990s in part as a result of a court case won by disability rights advocates known as the Jackson Lawsuit, which has continued to result in a number of new protections for children with handicapping conditions here in New Mexico,
Federal legislation in the last half century has also made a great deal of difference for children with disabilities and their parents. Ruth Luckasson, an attorney and UNM educator who has worked with the rights of children with disabilities, alerted me to a new policy statement for pediatricians, aimed at convincing those in my profession to help parents advocate most effectively for their children, and celebrating that federal legislation, first passed in 1975, and now known as the Individuals with Disabilities Education Act, or IDEA.
Pediatricians should know of the major provisions of the IDEA, and parents of both children developing normally and those with developmental problems should be made aware of them.
Annie, the Australian child, and many of the residents of the Los Lunas institution were denied a chance to be educated with the sweeping and false generalization, “They wouldn’t have benefited anyway.” But since IDEA, all school-aged children are entitled to a “free and appropriate public education,” with no exceptions. The mother of one of my patients with severe cerebral palsy and had moved from another country, was amazed and eventually very pleased when she found out he could attend school.
All children must be offered that FAPE in the LRE — that is, a free and appropriate public education in the least restrictive environment — as much as possible with like-aged children developing normally. So, no warehouses, and appropriate services along with peers.
IDEA requires that we seek out children with disabilities and offer services as early as possible — even before usual beginning school age, as soon as a disabling condition is recognized. Many New Mexico physicians are aware of the need to refer children under three to an Early Childhood Intervention agency, and children three and up to the Child Find Program at Albuquerque Public Schools. Parents can also self-refer.
It’s easy to recognize the need for referral with children like Annie or my patient, but it may be more difficult with milder disabilities. Sometimes, parents use wishful thinking to deny the need for special help; sometimes children’s physicians want to reassure more than is indicated; sometimes teachers assume a child is “just being lazy.” Parents should realize that there is little downside to having an evaluation done, even if it turns out to be reassuringly normal.
For parents who start seeing a problem after a child has already started in school, a written request to the school must, under IDEA, result in a response from the school within 60 days, usually an evaluation, and the development of an Individualized Educational Plan, or IEP. Schools are required to collaborate with parents on development of the IEP, but in case of disagreement, the law sets out an appeals mechanism.
In most instances, the most perceptive people about a child’s disabilities are the parents — after all, they spend much more time with the child than anyone else. Good physicians learn to listen carefully to those experts.
Professor Luckasson writes, “For parents who know before or immediately upon birth that their child is likely to have a disability, it would be very helpful to have a doctor/pediatrician who knows that schools are required to provide education and supports to all children including all children with disabilities. Sometimes these parents have unnecessary anxiety and fears because no one has told them that there will be special education to help their child learn if needed.”
IDEA says that it’s no longer appropriate (if it ever was) for a physician to be p/maternalistic and decide on his/her own what’s “best” for a child with a disability. We can listen to and then guide the parents, and if we aren’t doing either of those, parents would be well advised to find someone who will do both, taking advantage of major progress that has come with the passage of time and strong advocacy.