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Richert, Mark

Journal of Visual Impairment & Blindness, Sept, 2007, Vol.101(9), p.517(3) [Peer Reviewed Journal]

Imagine this scenario: A husband and wife, both blind, have twin daughters who are also visually impaired. While the girls were still toddlers, the parents decided to build on their own care and love for children and their own experiences with appropriate learning environments by founding a small community-based early childhood program for very young children with vision loss. The parents first got the idea to open such a program when a few other parents with kids who are blind asked if they could see how the twins played, the kinds of games or exercises that the parents did with them, or to simply let their children spend some time together with the twins. "Something magical happens when these precious little girls get to explore the wide world around them on relative terms of equality with friends who are like them," says the mother of the twin gifts. "We wanted to share the joy we found in seeing what a difference the right environment can make for kids with as many families as possible." By the way, this scenario isn't completely hypothetical.

In evaluating this program, don't allow yourself to be unnecessarily sidetracked by nagging questions that can be dispensed with right away. Yes, this literally mom-and-pop program does rely on the expertise of professionals who know how to work with very young children with vision loss. Yes, the program meets all appropriate state and local requirements for operating such a center. No, the program doesn't exclude children with vision loss who may also have other disabilities. And, no, although the program tries to be innovative, it doesn't "experiment" on kids with techniques and approaches that aren't in the mainstream. The center, which has expanded to provide bothearly intervention and preschool services, receives high praise from every sector of consumer and professional communities both within and outside the field of vision loss. So, it would be safe to assume that everyone loves the program, right? Not on your life.

For some time now, the federal special education law, the Individuals with Disabilities Education Act (IDEA), has required early childhood intervention services to be provided in so-called natural environments. Although the concept of a "natural environment" has never been adequately defined in regulations issued by the U.S. Department of Education, it is generally understood to mean that services must be provided in settings that also include children without disabilities. Yes, early intervention services can be provided in the home, but, generally speaking, services provided to children in center-based programs that are tailored to the needs of children with specific disabilities are not considered to be natural environments under IDEA. Yes, it is true that the law does make an exception to the overall mandate to provide services in natural environments. However, to justify a child's receipt of services at a center like the one described earlier, a successful argument must be made that appropriate services cannot be provided satisfactorily elsewhere. The question is, who gets to determine whether the services are appropriate or can be provided satisfactorily?

The short, yet somewhat technical answer, is that the Individual Family Service Plan team (the group of parents and professionals and others who get together to set up a plan for the delivery of early intervention services for a child in accordance with IDEA) is supposed to make the determination that services can't be offered satisfactorily in the home or in other natural environments. However, if these teams meet at all, how frequently do you think they include professionals with training in the needs of blind or visually impaired infants and toddlers? How often do you think parents are fully aware of the range of possible services, let alone the places at which they are offered, that meet their child's needs? And, the most salient question of all, Why must it be presupposed that an environment in which children with the same kind of disability play and learn together is somehow inferior to one in which services aren't tailor-made for them? In addition, why should it be necessary to go through an abstract exercise to justify placement in such a tailor-made setting as if there is something backward or unnatural about it?

The very short answer to all these questions is ideology--otherwise known as inclusion--and it's nothing new. However, the inclusionists' emphasis on integration at the expense of specialized services is getting renewed attention. The Department of Education has recently proposed to better define the meaning of "natural environments," and the American Foundation for the Blind (AFB), along with many other organizations in the disability community, offered formal comment on this and other proposals relating to the Department of Education's intended regulations. (See the full text of AFB's Part C comments online at <www.afb.org/ Section.asp?SectionID = 3&TopicID = 138>.) Although the Department of Education doesn't have much choice but to at least echo what language exists in IDEA related to natural environments in the rules that it will ultimately publish, the department can, and often has, embellished provisions of IDEA through regulations that give fuller voice to ideological perspectives that Congress would not otherwise entertain.

If you don't believe that an extreme perspective about the meaning of natural environments is being urged on the Department of Education right now, you are mistaken. AFB's comments on the regulations asked the Department of Education to leave as much flexibility as possible in the definition of the term natural environments. However, not everyone shares our perspective. In fact, we have been told by some of the more outspoken advocates for children with developmental disabilities, for example, that they are urging the Department of Education to specifically limit the definition of natural environments to so-called "inclusive community" settings. There is absolutely no statutory basis for limiting the definition in this way, and this fact is acknowledged by our inclusionist friends. These advocates, nevertheless, see such an interpretation of natural environments that categorically excludes specialized settings as being in perfect harmony with the overall goals of the law--how incongruous, when the most central aspect of IDEA is the individuality of each child and the need for services that meet each child's needs. In AFB's comments to the Department of Education, we have acknowledged the value of integrated environments. What we don't countenance is a one-size-fits-all approach that is relentlessly promoted by other interests in the disability-advocacy community. Of course we can fully understand the emotions that arise when children with disabilities, such as Down syndrome and mental retardation, are excluded from the education system because of the negative attitudes and discrimination they face every day. However, although some families and advocates may militantly believe that their children with disabilities are best served by participating in programs that are generically designed, these individuals can freely and forcefully advocate for their own children, while still leaving vital options open to the rest of us.

Our field's most important task, then, is to be sure that the concept of natural environments is kept broad enough so that it includes a range of available settings that are free of bureaucratic and ideological roadblocks. AFB has taken the first step in trying to keep the Department of Education on track as it considers how to issue final regulations regarding natural environments. If the definition and application of natural environments in those rules does not reflect a balanced approach that recognizes the need for environments that truly nurture, our only option is to call upon Congress during the next review of IDEA to enact appropriate language for young children with vision loss. If, however, as is likely, the Department of Education falls to effectively clarify the meaning of the term natural environments, it will still be incumbent upon AFB and our partners to work with the Department of Education and our partners to ensure that parents know about the options that should be available and how to secure them for their children.

Finally, in regard to the center-based program described in the introduction of this comment, fewer and fewer children are being referred to centers for early intervention services under IDEA and, with all the other pressures being faced by nonprofit organizations these days, the long-term future of the program described in this piece, as well as other programs like it, is uncertain. What is certain, however, is that its future can and will be largely influenced by our field's willingness to speak up boldly about the need for both natural and nurturing environments for children who are visually impaired.

Mark Richert, Esq., director, Public Policy Center, American Foundation for the Blind, 820 First Street, NE, Suite 400, Washington, DC 20002; public policy trainer, NCLVI; e-mail: <mrichert@ afb.net>.

Richert, Mark

 


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