I've posted a copy of my comment to Google docs, and it's available if you want to read it there. If you'd like to see your federal government in action, however, you can embark upon a search through the FCC site and try to find out where filed comments can be read. (Want a hint? Look for the electronic comment filing system).
In case you don't have that much time to read a 14 page document, I've excerpted my executive summary, intro, and conclusions here (tell 'em what you're going to say, say it, and tell 'em what you've said!) But note that you don't read the full thing, you won't get to read my Roomba reference!
Executive Summary
I urge the Commission to consider the unique challenges facing children with communication impairments, and their ability to access ACS as intended by Congress in the CVAA. In the Introduction, I present some of the background of these children with disabilities, and the challenges they face using technology currently marketed to the disability community. I then suggest actions the Commission should take to effectuate the intent of the CVAA for these children. First, in Part 1, I argue that children with disabilities will most benefit from multifunctional devices incorporating ACS, in which accessibility options are built-in on the operating system level, and in which third-party software accessibility options are available through regular consumer channels. Second, I urge the Commission to consider the vital importance of rendering ACS affordable to families supporting children with disabilities – the issue of nominal cost is not an academic one. Third, due to the speed in which consumer technologies are changing, permanent, blanket waivers are not appropriate.
Introduction
As noted in the regulations of the ADA and other federal legislation, disability is a continuum. To quote the Individuals with Disabilities Education Act, “Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society “.[1] Researcher Robin M. Smith notes that “Disability is socially constructed. Disability resides in the set of social relationships and outcomes of social practices that tend to disadvantage and marginalize people with impairments, perceived impairments, and physical differences. These relationships are institutional, cultural, and interpersonal social structures.”[2] I would add that these relationships are mediated by technology.
The technologies we use on a daily basis, for better or for worse, define how we interact with others, access information, participate in civic discourse, and thus help shape who we are and the role we play in society. However, for families of children with communication difficulties, finding effective technology to assist in advancing their ability to communicate across multiple contexts is enormously challenging. Often, these children require augmentative and alternate communication (“AAC”) systems. Yet finding these technologies, and using them in day-to-day, is difficult. Why?
(a) The market-dominant, existing technology is several generations old, physically heavy, and non-intuitive for families with nonverbal children;
(b) The cost of these AACs far exceeds that of newer, multi-functional technologies; and
(c) These AACs are outdated, and unfamiliar to “typical” kids. Such devices act more to distance the child with disabilities than connect that child with his peers, and serve as yet another reminder to the child with disabilities that they are “different”. Thus, there is another level of social stigma in even using these devices, which is an unnecessary extra burden for these kids.
In enacting the CVAA, Congress intended to eliminate the technology gap between the disability community and mainstream American society. The technologies used by kids with disabilities must be the same as the “mainstream” technology used by their typically-developing peers. A recent study published in the journal Pediatrics found that 15% of children between the ages of 3 and 17 have a developmental disability, a figure that some researchers feel is low, due to the fact that many learning disabilities are not diagnosed until the 4th grade.[3] That means that at least 3 or 4 students in every “typical” classroom have special needs, often in the areas of communication. By supporting devices that help these children learn to communicate, and that facilitate both face-to-face and distance communication, the Commission has the opportunity now to change the lives of over 10 million children with developmental difficulties.
The best way to effectuate Congressional intent is for the Commission to promote multi-function devices, with accessibility built into the hardware and operating system, customizable to an individual's specific needs through easy, inexpensive software downloads. This approach will permit the individual with a disability to use the communication device as part of her everyday life, without needing extra devices, or devices that mark the child as “disabled”. This individual will be able to take part in the same activities as her peers – playing silly games, sending texts, and learning from relevant applications (“apps”). Children with disabilities will learn, communicate, play, monitor their health, and benefit from organizational supports – all from the same device.
In canvassing the opinions of 1300 parents of special needs children in Colorado, I learned that the majority of respondents reported that their children (from ages 3-21) were using mobile devices, and using them for purposes far beyond that of typical voice communication.[4] For example, one child is using the iPad at school, instead of keyboards, because of deteriorating motor control (the iPad’s sensitive screen is easier to use). Another child’s mobile device has been programmed with his emergency information for him to provide caregivers, in the event of an emergency, because he is non-verbal. One parent reported that her 10 year-old son would not carry his AAC to school because it marked him as different; once he acquired an iPad with AAC software, he brought the iPad to school, shared it with his peers. He benefited from the interest of the other children in seeing his iPad, and the ease of using it to communicate.
The comment submitted by Words+ Inc. and CompuSult Systems Inc., members of the assistive technology industry, (hereafter, “CompuSult Comment”) is not necessarily in the best interests of the disability community. While we respect the experience of such industry veterans, their perspective appears to be more concerned with preserving the status quo – the existing assistive technology market - than with improving technological access to individuals with disabilities. Congress intended the CVAA is to merge the assistive technology industry with “mainstream” consumer technologies. Children with disabilities currently have access (such as it is) to second-class technology – it is time we gave kids with special needs the tools to succeed alongside their typical peers.
Conclusion
I conclude with a summary of my three key points:
1. Congressional intent is to eliminate the gap in accessing advanced communication services (ACS) to members of the disability community. This is particularly critical for non-verbal children. Multi-function devices, like smartphones and tablet computers, can provide a breakthrough for these kids, provided that (a) accessibility supports are built-in on the OS level and (b) software upgrades and third-party accessibility solutions are made accessible through regular consumer market channels.
2. ACS must be affordable to families already facing enormous medical, therapeutic, and support costs for their children with special needs. Medicaid and Medicare won’t step in to solve this problem; therefore, in setting boundaries around nominal costs, the Commission needs to consider the end cost to the consumer of the total ACS package, as compared to existing technology, and must expect to coordinate with other federal agencies supporting the disability community.
3. Because consumer market technology changes so quickly, and because device functionality is hard to predict, no blanket, permanent waivers should be issued; temporary waivers, with annual renewals, will sufficiently incentivize industry while permitting individuals with disability to benefit from this innovation.
[1] 20 U.S.C. § 1400(c)(1)
[2] Robin M. Smith, Social Advocacy and Systems Change, 1(2), 2008-2009. Robin M. Smith
[3] “One in Six Children have a Developmental Disability,” USA Today, Liz Szabo, http://yourlife.usatoday.com/health/story/2011/05/One-in-six-children-have-a-developmental-disability/47467520/1?loc=interstitialskip, accessed May 23, 2011.
[4] Email survey sent by author to the Parent 2 Parent of Colorado parent support group, Yahoo email listserve, April 20, 2011.
I just read your comments -- well done! You made a coherent case for using today's multi-purpose devices like iPads for access to advanced communication services. I hope the FCC listens.
ReplyDeleteJim,
ReplyDeleteThanks very much! I appreciate your feedback, and, well the fact that you read my comment.
I really believe passionately that we can make "mainstream" technology incredibly useful for the disability community. But, there are a number of hurdles to overcome.
From what background do you come? Education? Law? Technology? The disability community? Somewhere else? ;)