This is the first of a series of monthly blogs that will be written by members of the CPD Consumer Advisory Council. CAC members will feature blogs on issues and information that impact the lives of people with disabilities and their families.  Your comments are welcomed.

This month’s blog is written by CAC member Matthew Bone, a family advocate.

CAC member, Matthew Bone

The importance of building a personal support resource group for families and individuals with disabilities and the role the CPD can play in this, or,  You are not alone

When our daughter was born, we knew right away she had health issues.  We learned very quickly that the amount of work required to care for a child with health concerns was significantly greater than for a child without health issues. The doctors did not know what the real issue was, only that she was not expected to live. Now nearly 22 years later, she is in her final year of college, and doing great. She still has the same condition; we just learned how to deal with it.

The other thing we learned was; you need a support group! A support group is made up of people and organizations that you can call and ask to help. This may be as simple as coming over to talk, or other people with similar conditions. It really helps if you can talk to someone who has been there, and done that!

Look for groups that specialize in the area of concern for your child.  With the Internet, it is getting much easier to find information and people who are willing to talk. Recently I found out about the CPD and would recommend looking into what it can offer you. It can be a valuable member of your support group.

Build your support group, and most importantly use it. It will make your life and the lives of everyone around you better.

The thing I encourage people to remember is you are not alone, there are people who are willing to help, but you need to let them know you are willing to let them help you


Kelly Smith and Jeff Sheen will be on the quad at USU to answer questions on September 1.

If you are will walk through Utah State University’s Day on the Quad—or you know somebody who is—make sure you watch for these faces from the CPD on September 1. They’ll be there from 10:30 to 2:30.

Information specialist Kelly Smith and volunteer coordinator Jeff Sheen will be handing out information about our volunteer program, our undergraduate research program and the Interdisciplinary Awareness and Service Learning Class. All three of these programs have something in common: they’re looking for committed, good students. For more information, visit Kelly and Jeff on the Quad—and visit this website.

By Becky Keeley, IDASL Training Development Specialist

Daniel Roberts, an IDASL student presenting his research during USU Research Week 2010.

The Interdisciplinary Disability Awareness and Service Learning Program (IDASL) offers opportunities for students from a variety of disciplines to increase their awareness, knowledge and understanding of people with disabilities and their families across the life span.

Seniors and graduate students from a variety of disciplines are encouraged to enroll in the IDASL Program, which is listed as Special Ed 6500.  In the past, students from diverse disciplines, such  as audiology, elementary education, family and human development, music therapy, school psychology, social work, special education and speech pathology,  have participated in the IDASL Program which has a strong interdisciplinary component.  With the growing numbers of individuals with disabilities and their families, anyone going out into the professional world could have contact with people with disabilities.

According to the US Census Bureau, nearly one in five people in the United States have at least one disability.  The possibility of acquiring a disability increases with age.  By retirement age of 65 years old, 44. 6% of the population report having a disability.  By old age, over 85 years old, 84.2% report a disability.  With numbers like these, disability will most likely touch everyone.  The IDASL Program prepares students to interact in a world, both professionally and privately, where disability is a part of life.

Individuals with disabilities and family members of children with disabilities are encouraged to participate and share their unique expertise in the IDASL Program. The real-life experience with a disability greatly enhances the disability awareness and understanding of the disability community for the college students taking the class.

A student related how much she learned from a mother of a child with disabilities with these words: “I learned so much when [the mother] talked about how important people-first language is.  Her daughter has multiple disabilities, but she isn’t defined by them.”

A community member with a disability who participated in the IDASL program responded that she wanted “to share about [her] TBI (Traumatic Brain Injury),” thus becoming an advocate.  After a seminar relating the history of disability and societal attitudes, she had this to say about how people have reacted to her disability: “I have a deeper understanding of my negative experiences.”  Including community members with disabilities has positively impacted both the students and themselves.

One student shared the most important thing he learned after participating in the IDASL Program: “Instead of focusing on disabilities, let’s focus on abilities.  Focus on the person—everything is about the person, bettering their life, helping them feel like they are doing something, feeling fulfilled.”

The IDASL Program offers students much more than the typical academic credits and stipend. Using their interdisciplinary skills and disability awareness, students can benefit people with disabilities they will meet and serve in their professional and private lives far beyond graduation.

For more information about the IDASL program, you can go to the IDASL project description or contact Alma Burgess or Jeanie Peck.

Feeling the delights of shaving cream

July is the height of summer activities in Utah and the families of the children enrolled in the Up to 3 Early Intervention program at the CPD have had lots of fun participating in them with their children and the Up to 3 staff.

Up to 3 encourages the families they serve to let their children access activities already occurring in their communities.  Staff members are on hand to help the parents work with their little ones on developmental skills as they participate in a variety of activities.

Speech language pathologists know children are motivated and try harder to communicate at the fire station or watching a puppet show.  They cheer as they hit the ball playing T- ball in the park or when their putt goes in on a round of miniature golf.  And lots of language and communication can happen at the Logan and Brigham City pools.

A hole in one by a little golfer

Many of the activities for families planned by the Up to 3 staff specifically include fine and large motor, and sensory and tactile activities developed by the occupational and physical therapists.  This summer they held an Art in the Park day where the children could make clay creations-a tactile experience-and take them home to harden.  They also shared a sensory experience by walking and sliding on shaving cream added to a plastic tarp. The Family Picnic, planned by the OTs and PTs, included such fun activities as hitting a pińata, using sidewalk chalk, and playing on the playground equipment.

Making clay critters

There is also the free swimming available on Saturday mornings for people with disabilities and their families to enjoy at the outdoor Logan Aquatic Center, a wonderful service offered by the Logan City Parks and Recreation Department.

All in all, summer brings with it an abundance of activities for children with special needs and their families that are both therapeutic and fun for all to enjoy, thanks to the creative thinking of the Up to 3 staff.

In a recent post we outlined some issues surrounding web accessibility and the ADA. Since then the topic was the subject of in interview on the Utah Public Radio show, Access Utah.  You can listen to a podcast of the interview on the UPR website (the interview is in the second half of the program), or read the transcript below.

Web Accessibility

Kerry Bringhurst: During this portion of the program, we are going to be discussing accessibility for those who have special needs and might require a little more assistance in being able to access our technology, as we are just celebrating the 20th anniversary of the Americans with Disabilities Act. Joining me is the executive director of WebAIM, which deals with web accessibility for those with disabilities. This is Associate Director of the Center for Persons with Disabilities at Utah State University, Cindy Rowland. Thank you so much for joining us this morning.

Cyndi Rowland: Thank you. Thanks for having me.

KB: Now, Cyndi, WebAIM is actually located here on the campus at Utah State University.

CR: It is, it’s a project at the Center for Persons with Disabilities on campus, and we’ve been in operation for about 10 years now. Our focus is to assist others, to make their web content accessible. We have lots and lots of free resources on our website, webaim.org, and anyone can go and get some assistance there. But we work hard to make sure that when folks are done with our resources they’re pretty independent and can just get out there and make things available to everyone, including those with disabilities.

KB: Well, 20 years ago, when this act was incorporated, technology was fairly sparse, and not a lot was taken into consideration as far as thinking forward to where changes might have to be made to deal with technology.

CR: Exactly. When the Americans with Disabilities Act was constructed, even though it wasn’t passed and signed into law until 1990, conventional wisdom was that the bulk of it was written in the mid Eighties. If your listeners will think back to the mid eighties and what they were doing, I know for myself, I think I got my very first computer. It was an old Macintosh. Classic. I was so excited because it had 512 K of external hard drive, or something crazy. But that was in the late eighties. So when the language of the ADA was being constructed no one was thinking of the Internet as a social force, and it has become that. I mean, you can’t today operate very well in society if you don’t have access to the web. It cuts across all strata and just about every function. At the risk of monologing here, Kerry, I’ll say that these days, if you want to get a job you hunt for that job online. You probably apply for that job online. People with disabilities, to the extent that the web is not made accessible to them, may not have that opportunity unless they choose to self disclose to a potential employer that they need a different process, even to make an employment application. With schools, certainly they need to be making accommodations so that folks can get content on the web that is in education.  So often that content is provided after the fact, so if you’re a student in a class and there is a web content you might get it a couple weeks after the rest of your peers. It really does profoundly impact your outcomes and your ability to engage in principles of just-in-time learning that is a hallmark of educational excellence these days.

KB: So you’re talking about something like a power point presentation that might be included? Something that somebody with a disability might not be able to access whether they are not able to visually incorporate that, or maybe have a hearing impairment—

CR: Yeah, and let me even just back up and then I’ll come back to some examples. Of course, I live at this every day of the week, and I’m sure your listeners are trying to figure out what the heck we’re even talking about.

There’s roughly eight and a half percent of the general population that has some form of disability that impacts their ability to use the computer and the Internet. So right now that’s a little over 23 million people in the U. S. alone. If you are an individual who’s blind you would be using some assistive technology—a screen reader—that would actually read to you the contents of what it is that we see. If you were an individual who is deaf, you would need to make sure that in this era of very rich media and lots of video being added, that all of the media that has an audio component is also transcribed or captioned. If you were an individual who had motor restrictions—I think back to Christopher Reeve, an individual who had quadriplegia—he used an array of technologies, voice recognition and some switches, a puff-and-sip switch, that would then allow him to get access to the computer. But for all of the technologies that are available to help people with disabilities get access to the computer, we have to have the companion on the other side of web developers that are creating content so that it can be accessed by the web.

So coming back now to your question about power point, that would be one example. There are certainly ways that an instructor could embed some images into power points that could not be detected by a screen reader, or they could embed some video clips for students to look at that were not captioned. So to the extent that those bits of media are excluding folks with disabilities, that’s a real problem.

KB: It’s a learning problem, but it’s also a social problem, as you mentioned.

CR: Absolutely, absolutely. I mean, think of what you do on a day to day basis or a week to week basis with respect to the web. You know this morning when I was eating breakfast, I was checking my bank balances, then I paid a few bills. I need to re-register my car. I am planning a trip, so I’m probably going to get online tickets soon. And that’s just a small sampling, but you think of all the ways in which we use that powerful transformative social tool, the Internet. Having that not available to an entire class of people, people with disabilities, is a social disgrace. And I know that the Department of Justice right now is trying to clarify the applicability of the Internet as part of what is covered under the Americans with Disabilities Act.

KB: Yeah, that’s one of the changes that is being proposed. In fact, there was a bit of information that was provided by Thomas Perez. He’s the Assistant Attorney General with the Civil Rights Division at the U. S. Department of Justice. He recently was referring to a legal case that involved the Kindle, the e-book reader, that has resulted in some possible changes. I guess there was some controversy that there was some requirement that students might be getting their textbooks through the Kindle and that this might be prohibitive for some of the students in this class, those with disabilities.

CR: Right, and there actually had been several post secondary institutions that were looking at using the Kindle e-reader as the sole source for textbooks. It’s actually a cool idea if you are a student who’s lugging approximately 80 pounds worth of textbooks everywhere…

KB: [laughing] Which could result in a disability of some sort…

CR: All on its own. But, the maker of the Kindle, Amazon, although they had been asked to make sure that the e-reader could be accessible to people with disabilities, made a decision to not do that. Campuses were looking, then, at how they would need to engage in a reasonable accommodation for folks with disabilities. Long story short, it went to the courts because those students felt that this was discriminatory. Not only did the courts agree with the students, but the White House recently sent out a letter to all university and college presidents across the country admonishing them that as they are choosing technologies to make sure that they’re not discriminating against an entire class of their students, and I might even say and of their staff and faculty as well.

KB: Right. I have that letter here, and it says it’s unacceptable for universities to use emerging technology without insisting that the technology be acceptable to all students and, as you mentioned faculty and staff. It’s just hard for me, considering all the changes that are happening with technology and all of the amazing things we’re able to do, that we can’t incorporate this somehow.

CR: Well, I think that we are living a little bit in the past. When you think about the physical changes that happened around the Americans with Disabilities Act, where buildings were transformed into something that was accessible over time, where there was then a new focus on how to make sure that contractors, architects and an array of professional designers knew what the obligation was. Now fast-forward this into a virtual or digital space. It hasn’t been made clear, in part because the word “Internet” was never used in the statute back in 1990, people have wondered if the internet was really part of this. It’s not a brick and mortar entity.

KB: It’s not tangible.

CR: Right, and of course we’ve had two decades now of lawsuits that have dealt with the accessibility of the Internet. Depending on the particular case they’re falling all over the place. I do think that the Department of Justice realizes that we have passed that tipping point. We have crossed over now into the fact that the Web is going to continue to be a very important social mechanism and we can no longer afford folks the luxury of just making those decisions. The other thing that I want to throw into this is that in the past, again with the physical accommodations, there was always that springing mechanism of making a reasonable accommodation when something wasn’t right, and that makes sense if you’re talking about a building that doesn’t have an elevator. During that transition period people needed to figure out how somebody would get to the second floor to do their business. We needed time to figure that out. But when you’re talking about the web, technology is probably the one place where we can create things acceptably from the beginning. We do not need to wait for someone to make a complaint or to say, “I don’t have access and I really want to have access, and, please, please, pretty please, won’t you give me access.” We don’t need to do that with technology. But we’re still relying on that old accommodation process somehow to provide the basic access which, in our society is really a basic right.

KB: Let’s talk about some of the reasons why there’s been a delay in incorporating this, and why it might take a federal action to have this included in the ADA. Some of the concerns and misconceptions are outlined in the WebAIM blog. Why do I have to make my personal website compliant? People with disabilities do not use my site. My content can’t be made accessible. Why all the effort for so few people? These are some of the comments.

CR: Right. WebAIM has been blogging about this just in this past week. The story was picked up in another technology blog, Slashdot, where those were the comments of other folks.

KB: You were the instigator of this blog, we should mention. As executive director this was something you really feel passionate about.

CR: Absolutely. Actually anyone could go on to WebAIM.org and see the blog you’re referring to, which was penned by Jared Smith, one of our one of our senior staffers.

KB: And this is about the misconceptions and the concerns that you’re talking about, that you’ve been involved with, is trying to get some type of compliance incorporated with the ADA.

CR: Right. In our initial blog we were just providing the notice that the Department of Justice is seeking is seeking comment from the public on this notion that they would like to clarify and make explicit the obligation of governments and places of public accommodation, that the internet is a covered entity.

KB: So we’re talking libraries, universities that are government-funded.

CR: Certainly, and a place of public accommodation. I think that if people just consider what is covered now under the Americans with Disabilities Act, a place of public accommodation is places like, and I think the list is fifteen or sixteen long. They are places of commerce, they’re places of education, they’re places of employment, they’re places of entertainment, they’re places of social gathering. You can map any of that kind of stuff directly onto the web, but going back to some of the blog statements here, I do think that folks say to themselves, now wait a minute. Why would our website need to be made accessible for eight and a half percent of the users? It’s interesting because web developers routinely create fixes for very…

KB: …elite groups…

CR: …seldomly-used browers or yes, as you say, elite groups. I think in part because the web has been pretty much an unregulated entity, as our federal government moves in this direction there’s going to be predictably a lot of push back because folks are going to think that Big Brother is in here, just wrecking… One of the one of the top comments is, “Oh great, the web’s going to look like it did back in 1990.” There isn’t that understanding that we have come such a long way in accessible web design that you can give me virtually any website and I can give it back to you looking exactly the same. The only difference is it now can be accessed by everybody. I’m just going to throw in this one other thing Kerry. For all of us that hope to get old, we are going to hope that this Department of Justice rule making does go through, because there for the Grace of God go a lot of us. My eyesight is starting to go. My hearing is starting to go. My mother has tremors, and she uses the web. At what point would she no longer be able to accurately use the mouse? There are web developers that are still developing what are called “on mouse only” commands, so although they could be keyboard compatible, if you can’t use the mouse you cannot get around the website.

KB: It would seem like that would be a business opportunity, an industry for those who are willing to incorporate these changes. But there is concern, going back to this WebAIM blog, one of the concerns is again, there is no economic benefit to being accessible.

CR: I absolutely would disagree. First, let’s look at the disposable income of people with disabilities. It’s very high, and they’re going to be spending those billions of dollars somewhere. If you are business and you have product to sell, why wouldn’t you want to include that to a broader array of users? A lot of folks in the in the technology and web world will spend hundreds of thousands of dollars on search engine optimization. They want their site to return higher on Google, and what they don’t know is that by creating a site that’s more accessible, they’re probably going to natively come up higher in Google anyway. If someone complains you open yourself up for litigation, and making a site accessible after it’s built is always much more expensive than doing it from the ground up. Nobody in the Department of Justice briefings that are out is talking about making every one do this overnight. I mean, this would be rolled out over several years.

For most sites, a new site is rolled out every 18 months to two years. So what they’re really talking about is, as we go to the new that next iteration, let’s make sure that it’s accessible. Let’s make sure that we have things in place to pick up the problems that we have now. I’ll also say that for anybody that it is looking at going outside of our borders, the United Nations passed the Convention on the Rights of Persons with Disabilities. Part of that is an entire section that deals with accessibility, so if you were doing business in Asia, if you were doing business in the European Union, if you were doing business actually in much of South America, countries are now codifying a legal requirement for web accessibility for their citizens. Of course they’re not going to buy a U. S. product that has a software or web based component if it then would be a disadvantage for their own citizens or put the burden of the accommodation onto their fiscal shoulders.

KB: So would your office, or the office or the organization of WebAIM, would you serve as a resource to software developers and others who would like to incorporate this technology?

CR: Absolutely. We’ve got oodles of free tutorial and resources, we even have, for those that are developing web content, we have a web accessibility evaluation checker called WAVE. You can get to a place to look at your own stuff and see if it’s accessible or not. WebAIM, I would say… well, I’ll try to be a little humble here, but we’re one of top accessibility groups in the nation. In fact, you should Google us. You should Google web accessibility sometime. I think you’ll see that we’re usually in the top 5 returns of about 45 million hits, so we’re a very respected group. Who’d have thunk it? Up here at little old Utah State University in Logan.

KB: So are you hoping this will become the next social movement in American society?

CR: It is. It is the next wave of civil rights in America. Disability rights, where they butt up against the digital world, that really is what’s happening right now.

KB: Again, to our listeners, one of the best resources available is right here in Logan, at Utah State University at WebAIM, keeping Web Accessability in Mind. Cyndi Rowland is executive director at the organization. She also serves as associate director at the Center for Persons with Disabilities here at Utah State University. Cyndi, thank you so much for giving us an overview of what has been happening with the ADA and helping us look forward to much needed changes.

CR: Thank you so much.