Now that the Cogswell-Macy Act has been reintroduced in the U.S. House of Representatives as HR3535 and is beginning to get a fair bit more attention, as the principal author of the blindness provisions, I’m starting to hear both a lot of excitement about the bill and some questions about it, and I wanted to make sure that the lines of communication are open and clear. In particular, I’m hearing that some folks are concerned about the bill’s potential impact on braille use and instruction, so let me try to address that. And please feel free to share this with others who may be interested.
First, the Alice Cogswell and Anne Sullivan Macy Act is intended to make the strongest case possible for the need for dramatic improvements in the education of students who are blind, deaf, or deafblind, and as such, H.R.
3535 is the most comprehensive special education legislation meeting the unique needs of students with sensory disabilities that our communities have come together to promote in decades. While it is conceivable that the bill could be enacted by the Congress as stand-alone legislation, more than likely, the policy objectives it is intended to achieve will be incorporated in Congress’s overall effort to review and amend the Individuals with Disabilities Education Act (IDEA), which the Congress is expected to take up in the next couple of years. However, we shouldn’t wait for Congress, and in fact many of us are working with the U.S. Department of Education now, as we have been doing for a long time, to keep making improvements for students. But the Cogswell-Macy bill sets out the specific longterm legislative changes that must be made to IDEA if all of the students we care about are going to succeed.
The main things that the Cogswell-Macy bill does include: making sure students with sensory disabilities, including those who have additional disabilities, nevertheless have their blindness, deafness, or deafblindness properly identified and those sensory-specific learning needs addressed; holding states and schools more accountable than they are today for all of the services our students need; adding resources to the blindness community so that our teachers can do their jobs better; and particularly with respect to deafblindness, promote intervener services and much more recognition of the full array of services needed by students with deafblindness. There is a lot to the Cogswell-Macy Act, but in brief, it is really the first time our communities have come together in this way to lay out in know uncertain terms that all of the specialized services our kids need must be met if America’s special education system is going to be meaningful for them.
Far from undermining instruction in and use of braille, the Cogswell-Macy bill reaffirms that every child who is blind is to be provided with braille unless the team of educators, administrators, parents and other advocates, the IEP Team, makes a determination after appropriate evaluation that braille isn’t appropriate for this or that child. This has been the law of the land since 1997. Why isn’t braille being provided today as it should be? We know that there are lots of excuses, including negative attitudes about braille, the unavailability of teachers to teach it, and so on. But one key reason why students are denied braille is that they are not recognized as being blind but are classified as having multiple disabilities or are categorized in one other of the thirteen disability categories in IDEA. Since most of the students we’re fighting for do in fact have additional disabilities, you can imagine that lots of students who are blind or deafblind are getting put into other disability categories and so are not being recognized for their blindness-related learning needs.
The Cogswell-Macy bill puts a stop to this practice, making the braille mandate even more meaningful. And for those students who are in fact blind only, the Macy bill demands, as it does for blind students who do have additional disabilities, that the U.S. Department of Education take the braille mandate much more seriously and track whether students are in fact receiving braille as they should.
It is true that H.R. 3535 also lays out additional services to which students who need such services must clearly have a legal right to in order for them to fully participate and succeed in school. These services include orientation and mobility, low vision services and devices, independent living and other vital services. But it is important to remember that everything in the Cogswell-Macy bill, just like everything in IDEA, is about spelling out what the students we care about must have a right to. No law is automatic or can work without strong advocates to make it a reality.
So what we need to do is to give parents every tool that we can give them to make sure that their children have access to any and all services that they need. For example, if it is suggested to parents that their child be evaluated for independent living services, and the parents say no, our child’s doing very well in that area and we want you to focus on other more pressing unmet needs, then independent living services will not be in the IEP. Conversely, if a school tries to tell parents that teaching students important independent living skills isn’t the school’s responsibility, the Macy bill will ensure that parents can much more effectively challenge that denial of services and, just as importantly, ensure that a blind child who has additional disabilities is taught independent living skills in a way that is truly effective for students who are blind.
As someone who has been a life-long braille reader, I can tell you on a personal note that I would never tolerate any attempt to weaken the existing braille requirements. And I’ll also tell you that, professionally, I have been trying to respond to those in our field who are interested in finding some way to strengthen the braille requirements even more. One way I think that can happen might be to spell out in IDEA that the IEP Team can only make a determination to withhold braille with the parents’ consent.
Right now, IEP Teams make that determination as a group based on consensus but may make that determination in spite of the parents’ objections. Of course, if parents are upset at the denial of braille today, they can formally protest the decision using the procedures and remedies that IDEA provides already. So it seems to me that further restricting IEP Teams’
denial of braille to those situations in which parents concur might be a good way to further empower parents to protect their children’s right to braille. But this proposal hasn’t been written into H.R. 3535 because I know that other consumer advocates for blind kids are thinking through whether they like this approach or whether a different approach would be better or whether the existing law is sufficient.
So the bottom line for now is this– The Macy bill does nothing to the existing presumption for braille instruction and only makes it even more meaningful by ensuring that students who are blind who have additional disabilities nevertheless have their blindness-specific needs honored.
Additionally, the Macy bill empowers parents who want to be sure the fullest possible array of services are available for their children by spelling out exactly what those services are and unequivocally establishing that our kids have a right to these services. The Macy bill does not shove these additional services down students’ throats but rather gives parents clearer legal footholds to stand their ground more effectively for their children.
With that, let me close by thanking you for your advocacy. We’ve got a long road ahead of us, but with the unprecedented collaboration we’ve built with the blindness, deafness and deafblindness communities working together, we are positioning ourselves well to affect significant change. And please do not hesitate to reach out to me directly with any questions or ideas you may have.