For parents who are trained to be effective advocates for their children in the educational system, one of the first rules they learn is to omit the word 'best' from their vocabulary when seeking to implement a service or support in their child's IEP. Why? The Individual Disabilities Education Act (IDEA) requires that special education provide a Free, Appropriate, Public Education (FAPE). If you mention the word 'best' in your child's IEP meeting (i.e. "We only want what's best for Janie") you will probably hear the statement, "Gee, we wish we could provide that service, but we can't provide 'Cadillac Services'. We are only obligated to provide an appropriate amount of services". Case law has backed this up as well; with courts drawing a sometimes subjective line between what is 'appropriate' and what would be considered 'over the top'. (Read Board of Education vs. Rowley) As so aptly discussed on www.wrightslaw.com in an article entitled, "Four Lessons About FAPE" it reminds parents, 1) Your child is NOT entitled to the BEST special education. 2) Parent testimony carries little weight in the eyes of judges. 3) School staff will testify that their program is appropriate 99.9% of the time. 4) Parents must have strong knowledgeable experts in special education litigation - and experts must never use the terms "best" or ”maximizing potential." This is important for parents and advocates to understand.
And so, as parents, we have been taught to bury the standard of wanting what's best for our kids. We are sunk into conversations at our child's IEP annual meeting about 'appropriate' services, which in effect, are usually sub-standard, bare-boned, minimal types of supports for our children that often don't meet their most basic communication needs. The result of these conversations is evident when we look at the historic academic outcomes for deaf and hard of hearing children. (Do we need to say it again? Our children our graduating at a 3 rd grade reading level)
Parents do need to be objective and realistic about what they can advocate for on behalf of their child's educational services. There is a long history of reasons why it has been difficult for deaf education services to provide an appropriate, communication driven system: Shortage of qualified staff in deafness, lack of funding, no universal standards of practice, lack of access to a critical mass of DHH students in a geographical region, just to name a few. Over the years, many organizations and agencies have compiled their lists of the complex issues that face education of students who are deaf and hard of hearing. Because of the complexity of the issues, the answers will require the expertise and collaboration of many stakeholders. Meanwhile, does that mean that you shouldn't ask for a video to be closed-captioned for your child? Let's get real!
Write it down.. Think about it.. Do some research.. Talk to other parents.. Talk to DHH adults (outside the IEP Team meeting). What would be the perfect environment, supports, and services for your child? We so often start at the bottom of the barrel in terms of support, that we don't even think about what would really meet our child's needs. Instead of thinking 'bottom up', create the perfect vision of an excellent education for your child who is DHH. Closed captioning, acoustical adaptations, up-to-date technology, instruction from a teacher in your child's primary mode of communication, authentic peer relationships, a certified, qualified sign language interpreter. Whatever it is. Think of your child's education as if it were completely communication driven. Remember that the language of IDEA supports the consideration by IEP teams of the communication needs of DHH students.
Now that you have your list and ideas, begin to prioritize in terms of what are the most important aspects of communication access for your child. Be prepared to discuss your child's needs at the IEP meeting by having a well thought out, documented, research based plan of supports and services that you feel your child needs in order to get an effective, appropriate education. If you have a list of 20 ideas about what your child needs and prioritize them, you are more likely to be able to advocate for the 'most needed' items. What are the bottom four items on your list that you would be willing to 'negotiate away' in order to get the top four items on the list? Maybe you don't have to 'throw away' the lowest priorities, but you might hold off on those things until the next year's IEP review.
Sue Heath, the research editor for www.wrightslaw.com , noted in an article, "NCLB News: Something Fairly Amazing Happened on December 9" the use of the word 'best' in the Federal Register notice for the new regulations for the No Child Left Behind Act. ". Several critical elements in Title I as amended by the NCLB Act ensure that schools are held accountable for educational results, so the best education possible is provided to each and every student. (Emphasis added) Three critical elements - academic content standards, academic achievement standards, and assessments aligned to those standards - provide the foundation for an accountability system ensuring that students with disabilities reach high standards. State assessments are the mechanism for determining whether schools have been successful in teaching students the knowledge and skills defined by the content standards. States are required to hold all students to the same standards except that these regulations permit States to measure the achievement of the students with the most significant cognitive disabilities based on alternate achievement standards." While the IDEA reauthorization continues over the next several months, as well as the ongoing implementation of the No Child Left Behind Act - several questions remain unanswered. Will current law (NCLB) and reauthorization efforts (IDEA reauthorization) bring about real and lasting changes for our population of kids? Will laws ever be able to produce the standard for excellence in education that parents and committed educators can and should maintain? The answers remain to be seen.
In some states, deaf education reform has been talked and written about. In other states, like Colorado, deaf education reform is beginning to be implemented in exciting ways. Professionals and Parents from all over the country are having discussions beyond the 'listing' of concerns and possible solutions, to the beginnings of implementation that could change the future of deaf education. For cynics who feel like they've 'heard it all before' - without seeing any fruits of real change, it is time to consider a new element that may not have existed previously.
While the Deaf Education Reform movement is seeking to make systemic changes in the way education is being delivered to deaf and hard of hearing students, parents from all over the country are beginning to stand up for the communication rights of their children in IEP after IEP. A grassroots movement of families has been spurred on by changes in the way we receive information and make choices (more information via internet etc.; ability to make communication decisions based on the needs of the child vs. philosophical methodology decisions; more information from a variety of sources). Early Identification of hearing loss is beginning to erode the old 'delay is inevitable' paradigm. Parents are beginning to question and demand more than the 'bottom of the barrel' for their children. Many professionals throughout the country are standing up to the status quo, and seeking to look at alternative solutions to age old problems.
For many, the hope of a brighter future is emerging for our children who are deaf and hard of hearing. It is still true that parents and advocates need to refrain from using words like 'the best' and 'maximizing potential' in the context of IEP development. However, we all strive for the day when we can confidently say, "Our children deserve the very BEST, and that is exactly what we are giving them."
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