Sunday, January 30, 2011

Liz Halperin's Dream

I just got an email from the incredible Liz Halperin. She's one of our Bookshare team members and also happens to be deaf and blind. She shoots me me very interesting ideas frequently, and I thought I'd share this one with my blog readers. I can't quite figure out how to make it, but I bet someone will!!

Hi Jim, Busy, busy man. But I'm intruding because you are "intrude-able" and I have a dream. Like all good science fiction, it starts as a dream, and then somehow becomes real. You have blogged about various funders looking for those "great leaps of imagination", that if created, could make a huge benefit to people.

My idea has likely been floated already, I have no idea. But it's tech-time sci fi.

I imagine I have a small, lightweight box or sphere or flat case like a woman's cosmetic compact in my rear jeans/slacks pocket , purse/briefcase or backpack. I stand in front of a building and pull out the item, and push a button on it or give a verbal command or a method from my wheelchair. The unit opens out to be a hologram. I can give commands (as above) for different levels of info. General layout down to exact placements of empty chairs in an office, or location of receptionist at his desk. Finding the front door, the elevator. If I'm deaf-blind, being able to physically feel the potted plants between the door and elevator. If I use a wheelchair, being able to see in advance if a restroom will be accessible. The hologram not to be just vision: but able for people to feel items, or have stuff spoken to them. Ability to program it for individual needs (me to manually feel, vs. Scott Rains to see vs. Rob Turner to have it read aloud, or converted to braille, and so on) [Note from Jim: Scott Rains is a wheelchair user and Rob Turner is blind, both on our team here at Bookshare]. I could scope out my street for X number of blocks. Discover *in advance* that 36th is closed to pedestrians on south side due to construction. (A biggie for me.) When done, the whole thing collapses back into its mini-shape. This is GPS to an exponential level. It would be immediately updated when turned on, via some sort of satellite or other new tech for indoors. I could stop outside my aunt's house and find which furniture has been moved where. Could help soooo many people, including the senior/geriatric set.

Big dream. High tech. "Out there." But why not???? Maybe you can pass this idea off to someone who likes the headgame and might even pitch it to one of those funders….

Saturday, January 29, 2011

Lawsuit over denying access to a student with learning disabilities

We're really proud of the rapid growth of our Bookshare online library for people with print disabilities. We're up to more than 125,000 users, with over 95,000 books available, and our users are now accessing content at a rate of more than million downloads per year!

That's why it's painful to hear about disputes over denying students with very real print disabilities access to these resources. I've recently been corresponding with a mother whose son's school district seems to be suing them to deny access to accessible material. She asked me to comment on a bunch of issues around Bookshare, and we prepared the comments below. I'm really hoping more information will help resolve these kinds of disputes: I'm often surprised at the things I hear from the field.

Statement on Bookshare
January 24, 2011

Response to Request for Information
Benetech, the nonprofit parent of the Bookshare online library for people with print disabilities, is responding to a request to answer specific questions on how Bookshare operates. Rather than discussing private information about our users, we will answer these questions with information on how Bookshare operates and what typical schools and users would see at different times in using Bookshare.

Background Information
Benetech is Silicon Valley’s deliberately nonprofit technology company. We look for social applications of IT that will make a major impact on social sector activities. We’ve already made a huge difference in the area of software for students with disabilities and for human rights and environmental organizations. We have IRS recognition as a 501(c)(3) charitable nonprofit organization. Our largest single funder is the Office of Special Education Programs of the U.S. Department of Education, which contracts with Benetech at the level of $6.5 million per year to provide accessible book services to students with qualifying print disabilities nationwide. Bookshare currently serves more than 120,000 students with disabilities, and has more than 95,000 accessible books. Our social goal is that all students with disabilities which prevent them from effectively using a printed book, have the opportunity to read the same titles as students without disabilities, through the use of assistive technology and Bookshare digital books. The most typical means of accessibility is to use software that reads the digital text aloud in a computer-synthesized voice.

The legal framework for Bookshare is the Section 121 copyright exception in federal copyright law: all Bookshare users must have a disability that qualifies under that section. In addition, students who receive textbooks that originate from the National Instructional Materials Accessibility Center must meet additional requirements, most notably that they have an IEP and are covered by IDEA.

1. What is the school signup process for Bookshare?

Bookshare services are freely available to any school in the U.S. serving students with print disabilities. Organizations need to do the following to begin downloading copyrighted content (public domain content is free for all visitors to the Bookshare website):
• Create an online account with basic information about their school or district, listing a Primary Contact responsible for the account
• Add one or more students who qualify, including name, grade level, disability status, IEP status (yes/no), and names/emails of additional staff authorized to download copyrighted information (we call them sponsors)
• Agree to a plain language organizational agreement that commits the school to following the laws around who qualifies and restricts the provision of copyrighted material to only students that qualify

While almost everything around Bookshare signup and activities is done online, we must receive a signed copy of the organizational agreement (attached to this statement) either by postal mail or by fax. The signup process explains each of these required steps. In addition, the school’s primary contact would be reminded of this information by email as well.

2. What happens when a registered organization attempts to download books or requests books before the organizational agreement is signed?

If an organization has not yet returned the signed organizational agreement, instead of download links on the book page, the staff person for the organization will see this message: “The primary contact of your organization must sign and return the organizational agreement to finish registration. This form is available at the Bookshare Help tab.”

3. If specific NIMAS textbooks are available through the Bookshare catalog, can organizational sponsors (Bookshare’s term for staff people authorized by a school to download content) in New Jersey download them directly from Bookshare, or do they first need to go through the state accessible instructional material coordinator?

Textbooks that have been previously requested by other schools or state education agencies are available for download by any K-12 sponsor for students with IEPs (to meet the legal requirements of the IDEA law that established the NIMAC).
If the specific textbook is in the NIMAC, but not yet in the Bookshare library, an authorized user of the NIMAC must request for that textbook be assigned to Bookshare to be converted into a student-ready file. More than half of U.S. states have designated Bookshare as an authorized user for those states, and so Bookshare can simply take care of all such requests from K-12 staff in those states. New Jersey is not such a state, and thus Bookshare would need to wait to be assigned titles by an authorized user of the NIMAC for the state of New Jersey, typically a responsible person at the state education agency. Perkie Cannon is currently listed as the state’s NIMAS/NIMAC coordinator at the CAST website: generally we would point schools to the person with this responsibility to learn more about that state’s process for assigning NIMAC books to be converted.

4. If a member has trouble opening a Bookshare file, or cannot get the file to function properly, what kind of response or advice might they get from technical support? Would it be unusual for Bookshare technical support staff to advise a member to continue to download the same book multiple times, in the absence of any other directive or suggestions, in an attempt to get it to work?

Bookshare’s response will vary with each situation. Generally, support staff will ask the member or sponsor if they are seeing any error messages and which steps they took that produced the error. If Bookshare staff is unable to reproduce the error internally, we may ask the member to perform the download again and let us know if they continue to experience the problem.

5. What school districts in Mercer and Middlesex County, NJ have a Bookshare membership?
Unfortunately, we can’t share specific school district data as it is confidential. We can share that we have multiple K-12 organizations using Bookshare in those counties, as far as we understand the results of a search for those areas in our organization database. In New Jersey alone:
• 5400 K-12 students are signed up for Bookshare services
• We’re serving roughly 500 K-12 school organizations, which includes both school districts and schools
• The majority of K-12 students that we serve are students with learning disabilities, severe enough to meet the qualifications of Section 121
• All students with (such a) LD classification and an IEP are eligible to have NIMAC-sourced textbooks downloaded for them by their school or LEA

6. What is your typical response time to a school contact? How often, or what percent of the time would you estimate that it takes two weeks to respond to a school contact?

It is Bookshare’s goal to respond to support inquiries within two business days, and we meet or exceed this goal in most cases. In rare cases, some responses may be delayed due to the need for additional information and other factors that change with each situation, but we strive to keep these delays minimal.

7. Are NIMAC-sourced textbooks only for the blind?

The majority of students served by Bookshare, the largest user of the NIMAC, are not blind. Under IDEA 2004, the students that are eligible to receive textbooks obtained through the NIMAC must be doubly qualified: they must have an IEP and a disability that qualifies under the Section 121 copyright exception. Students do not have to be blind to have an IEP: it’s simple to demonstrate that from statistics widely published by the Department of Education (the blind and visually impaired are a very small fraction of students with IEPs). Students do not have to be blind to qualify under the copyright exception. Bookshare and RFB&D, the two largest agencies the serve students exclusively who qualify under Section 121, both have more than 70% of their members as those with learning disabilities. Of course, since the Department of Education is the largest single funder of Bookshare and RFB&D, our policies for how to serve students (and which students qualify under IDEA for NIMAC-sourced content) have received extensive legal review by the Department’s attorneys.

8. Does Bookshare work with the Kurzweil products for students with learning disabilities?

Bookshare works with all developers of access products that support our users with qualifying disabilities. The Kurzweil 3000 product is one of the leading commercial products used by our users with learning disabilities. As a point of fact, the Kurzweil 3000 allows Bookshare users to search for Bookshare books, download them, and read them without ever leaving the Kurzweil 3000 software program.

Monday, January 24, 2011

Brainstorm in Providence with a side of Serendipity

I occasionally get invited to small group brainstorms of key leaders in fields where we’re active (and we’re active in a lot of fields!). I’m on the plane home from one such weekend in Providence, Rhode Island, held at Brown University. The Think Different Summit was 15-20 smart people, led by an experienced facilitator, trying to imagine the future of the learning disability rights movement.

The outcomes of the brainstorm aren’t for me to share, although I look forward to tweeting/blogging as some of these results hit the web. But, I can share the excitement of being part of this process and some of the things I learned.

For one thing, it was the first meeting with a major presence of adults with avowed learning disabilities. Of course, with the prevalence of people with learning disabilities in the population being one in four or five, they’ve been part of probably every meeting I’ve ever been to! But, these leaders were “out” about their disability.

And so, the first insight for me was the role of adults with learning disabilities in their own rights struggle. I would not expect the parents of blind children to drive the rights struggle for blind people, but I had taken the role of parents as the prime movers in the LD movement for given. Part of this is that LD was much less diagnosed in my generation, but now we have quite a number of people in their 20s and 30s who have known that they are people with learning disabilities from a young age. I’m sure part of the issue is that society strongly encourages people with LD to stay in the closet about their disability. But, the increased leadership of people with LD in their own movement seems a given. Of course, it’s pretty clear given heredity that many parent leaders in this effort have LD too!!

Over the weekend, I received email from a parent who is will be in court next month, fighting an attempt by her son’s school district to remove his access to textbooks through Bookshare (he won’t lose access to Bookshare itself, just the couple of thousand K-12 textbooks that we have where the school is the gatekeeper). I was able to share her predicament with the people there, and the chair of one of the organizations present jumped to offer his assistance to this parent, since he had worked on LD advocacy in her very state.

The need to requalify for dyslexia services over and over again at great expense (thousands of dollars each time) to get accommodations in school and for testing came across as a huge problem. At Bookshare, we don’t think that people with LD get “cured,” because that's not our understanding of the science. We don’t require people to qualify again once we’ve received the initial certification of a qualifying disability. We’re dealing with people with severe disabilities that stop them from reading a print book effectively. This won’t go away. But, the great expense involved in qualifying puts advanced educational opportunity beyond the means of most families with a child with learning disabilities. This seems to be an even bigger problem than I recognized.

Another welcome opportunity was the chance to talk informally with some of the top leaders in our field, including Jim Wendorf of NCLD and Andrew Friedman of RFB&D, who are both on the federal commission on accessible materials for post-secondary students.

Although the topic was on learning disabilities, one of the funders present had a strong interest in environmental ideas. Right now I’m spending more time on a new project concept at Benetech around helping local government address practical issues around climate change. I received a handful of people we should be talking to, and strong feedback on different aspect of our ideas.

We are strong believers in the power of serendipity: the idea that great things happen when you get together with interesting people that were in no way anticipated! This weekend just reconfirms that for me: most of these exciting outcomes weren’t anticipated by me: and I’m not even discussing the central topics of the event!!

Tuesday, January 04, 2011

Russia rights groups get help from Microsoft

Patrick Ball and I have often discussed the risks to social justice groups from using unlicensed proprietary software. A government could suppress a group using "piracy" as a reason, rather than criticism of the government. We've seen this happen in places like Russia.

That's why it's heartening to read an article like this in the Christian Science Monitor, Russia rights groups get help from unlikely champion: Microsoft. It doesn't help Microsoft to be associated with suppression of environmental and human rights groups, and it's great to see them do the right thing!

Saturday, January 01, 2011

Benetech Truths

Benetech has spent a good part of this last year thinking about what's next for our mission and our team. A crucial part of that effort has been to identify what we think is uniquely true about Benetech. This portion was an internally focused effort based on conversations with our team. We came up with the following truths as part of that process. You might call them Benetech's values, but we didn't look at traditional organizational value statements while drafting these truths. Writing them down has been powerful for us: these truths articulate who we are and how we do things at Benetech. We're striving now to fully live up to them!

Benetech Truths

1 We are committed to social change through technology.

Benetech is a Silicon Valley nonprofit organization developing innovative technology solutions with a primary goal of positive social change rather than profit.

2 We get stuff done.

Benetech has a record of success in securing funding, creating partnerships, and delivering products and services that are useful tools for the social sector. Our users are the primary drivers of our technology development. We honor our commitments to all our stakeholders. Our work has significant impact on users, partners, and the fields of social enterprise, human rights, disability and the environment.

3 We do the right stuff right.

We solve social problems that otherwise would not be solved. We are a nonprofit technology company serving the unserved, tackling important challenges that the private sector cannot by developing content, products and services to effect social change. We value professionalism, dedication and service. We seek to evaluate our people and our work, and to continue to document and improve our procedures.

4 We prefer open to proprietary (internal and external).

Benetech seeks to be open internally and externally. While respecting individual privacy and our other values, we foster a collaborative work environment through open communication. We rely on open source tools for information exchange and development tools, as appropriate. Externally, Benetech is committed to open standards in software to ensure others are able to learn from and contribute to our work.

5 We think we can do more together (internally and externally).

Benetech works in partnerships. We value modesty and show humility and respect for users, community members, funders, opinion leaders and organizational partners. We avoid competing with our partner organizations. With extensive feedback from users, we ensure our projects truly make a difference, helping to amplify the impact of our partner’s work. Benetech’s partnerships in literacy, human rights and environmental conservation are matching the creativity of the high-tech sector with the efforts of grassroots leaders around the world.

6 We value flexibility (as an employer and from our employees).

Flexibility is an asset to Benetech’s accomplishments and to its ability to attract and retain excellent staff members. We seek to establish workplace flexibility that enables greater effectiveness without sacrificing teamwork and spirit. Benetech is committed to communication and cooperation with employees, whether physically present or not.

7 We are committed to personal and professional development.

Benetech’s success at effecting social change stems in large part from its excellent staff. Benetech seeks to create leaders by fostering personal learning, growth and service. We want to expose all of our team to our technology and our customers. Benetech seeks to empower its managers with knowledge, authority and responsibility, and encourages them to use their judgment and expertise. We encourage our staff to take on leadership positions within the fields we work, through activities such as external speaking engagements. These opportunities bring benefits not only to Benetech but to the broader community.

With regard to professional development, Benetech’s depth of knowledge and diverse program activities offer great opportunities for cross-learning in the workplace and in the field. These include formal and informal activities such as individual training by other staff members, workshops, staff brown bags and visiting speakers. Benetech assists employees with courses, degree programs and other relevant learning experiences. Benetech seeks to nurture and celebrate staff and organizational accomplishments.