I am fortunate that one privilege of editing this publication is that I get my own soapbox in every issue to talk about pretty much whatever takes my fancy. I had a particular topic in mind for this issue, but as sometimes happens, as the articles came in, I found a theme emerging which interested me more and which I find more relevant to this issue. (You'll get the other one some time in the future.)
The recurring theme to which I'd like to add my voice can be stated in a single word: advocacy. In his 101 series lecture Frank Welte provides strategies for advocating for causes you believe in. Steven Mendelsohn in his article on healthcare reform emphasizes that we must each become an advocate to ensure that aspects of the new spectrum of healthcare issues facing us as blind or visually-impaired citizens don't get overlooked. And in her first message as our new president, Donna Pomerantz reminds us that this organization belongs to each of us and that every single one of us must in a sense become advocates for those areas where we have skill or expertise.
To me the essence of advocacy has two components: speaking up and maintaining perspective. Most of us aren't born good advocates; we gain the skills with practice and experience. After nearly 40 years as a member of this organization, (from its NFB days through its stand-alone status, to its current affiliation with ACB) I'm very good at speaking up. But I wasn't always.
Looking back, I now realize I liked participating in my classes: asking questions, making my point; I even got over my fear when instructors unexpectedly called on me and I stumbled for answers. I survived to talk another day. Finally in my chapter meetings of the UC students in the early 60's (where everyone liked to talk), I asked a question about a piece of legislation. No one laughed, and I learned about a particular bill we were promoting.
Repeatedly I expanded my comfort zone: as in the following incident. In in the spring of my sophomore year, I answered the phone one afternoon when I was the only one at T-22, the semi-permanent portable where all the blind students studied back then.
"This is Dr. tenBroek," the voice said. (Many of you will recognize the name Jacobus tenBroek if for no other reason than that Catherine Skivers, in her recent articles about CCB history, refers to this member of the founders of the organization. While he is a controversial figure in ACB annals, he is revered by the NFB, and as a UC professor and sponsor of our student group, I knew, admired and was terrified of him.)
"I've found a little money from a generous donor here in Berkeley and wondered if any of you over there needed anything." I was tongue-tied; my knees shook. I desperately wished someone else were there for me to hand off the call to. Well as some of you know, Dr. tenBroek didn't suffer fools, and as the silence lengthened, he said, "Well if no one there needs anything," "No," I said, "That is yes! Sir, we don't have enough braille paper. I use the back sides of all my notes from last semester." "How much paper do you need?" "Any amount would do!" "I said, give me a number!" He wasn't making it easy for me. "Well, if we had 6 maybe 8 reams of paper, that would give everyone some for probably a year." "Why do you need so much paper?" "Well I write over 5 pages an hour every lecture and practically copy my textbooks word for word." I was surviving!
"That all?" "I, we could use some tapes!" He wanted to know why rehab wasn't buying us tapes. Having justified the need for paper, I now had to make the case for tapes: we got them but never enough to save books from earlier semesters to keep as references. "That's a good reason!" I was so thrilled that I didn't hear his next question: "I can't hear a number!" I asked for a hundred!
"Shall I tell the others you have money for things they need?" "No, you just spent it all!" I hung up, knees still wobbly but elated. I had advocated for things we needed and been told by the man I almost considered God that I had defended my requests.
On my first trip to Sacramento, I couldn't imagine ever talking to a legislator. Accompanying another CCB member who did all the talking, I discovered that the secretaries and administrative assistants were down-to-earth people, kind, interested and willing to listen. Then in my junior year, I took a bus by myself to Sacramento and visited legislators' offices; I was handing out invitations to our legislative dinner rather than arguing about a difficult issue, but I had gone into those offices; spoken to the staff: and survived. I'm proud to say that though I couldn't accept the job (because as luck would have it I had gotten a summer teaching position), in 1968 the CCB offered me its job as legislative advocate, only a few short years after my joining the organization.
So speak out and expand your comfort zone: ask questions, make your point, stand your ground: in small committees; at chapter meetings; then perhaps on the floor of the convention; then in all the ways and places we so need your efforts.
As for maintaining perspective, Frank wisely advises: keep your temper while advocating! Now this I'm not so good at! Threatening to sue Safeway because their so-called site for visually-impaired shoppers lacked crucial services offered to folks using the regular website, was not one of my better moments. Screaming at the taxi driver who refused to take me and my guide dog to the airport got me no closer to JFK. But I can't spend another 40 years learning this oh-so-important aspect of advocacy.
CCB Fall, 2010 Convention Report
Thanks to a number of contributors to this report: Ardis Bazyn, Lorraine Brown, Steven Mendelsohn, Phil Obregon, Roger Petersen, Katherine Schmitt Whitaker, Judy Wilkinson. This time we have longer accounts of the 4 general sessions and less space devoted to the other convention activities. Remember most of the convention events are available in audio mp3 files for download andplayback.
Lorraine Brown, Part 1
Friday afternoon brought the first CCB general session, with Jeff Thom, CCB President presiding. After the invocation, the presentation of The Colors by the United States Navy Color Guard, and the Pledge of allegiance, the program began with a history lesson about La Jolla from Carol Olten, Historian, La Jolla Historical Society. She said that La Jolla's name is a somewhat controversial subject among town historians. Is it from the Spanish word for "jewel" or the Indian for "hole in the mountain"? In the 1890's, La Jolla became an artists' colony and newspaper heiress Ellen Browning Scripps, whose name is on a number of landmarks and institutions including the Scripps Institute of Oceanography, settled there.
Wesley Johnson and Nikki Warren from Accessible San Diego not only spoke about how accessible San Diego is, but also brought the information on thumb drives for distribution. "Adaptive Martial Arts practice: the path to inner strength and mental focus" was the title on the next presentation by Mario Schapp, Certified instructor. He stated that Martial Arts began when someone first threw a stone and hit his opponent.
"Do you want to learn how to sail before the tide changes too often?" Kelli Gardner, Program Coordinator, Challenged America San Diego, spoke about learning how to sail as a disabled person. The organization was started by two disabled veterans in 1978 when, sitting on the shore in their wheelchairs, they saw people having fun sailing and decided they also wanted to do it. A volunteer sits behind the participant for instruction, safety and as eyes. The controls in front of the participant allow her to do the sailing. Tammy Airhart, a participant with the group, told how learning to sail had brought her out of severe depression when she lost most of her vision.
Joe Xavier, Deputy Director, Specialized Services Division, Department of Rehabilitation (DOR) was the last presenter of this session. He said that DOR was still working on dispensing the stimulus money received from the federal government last year.
Phil Obregon
The 2nd general session was called to order by presiding officer first vice-president Eugene Lozano. Remembrance of CCB members who have passed away since the spring 2010 convention included Mark Oswald from the Bay View chapter; Candis Jones from the San Francisco chapter; Lillian Ganes from the Redwood Empire chapter; Francis Manino from the Glendale Burbank chapter; and Barbara Parker former CCB employee.
Rob Turner gave the credentials report. This included the new Coachella Valley Chapter. Seven chapters did not provide membership information and were not seated.
The first speaker of the evening was John Feeney, M.D. Chief Medical Officer, Vanda Pharmaceuticals Inc. Rockville, MD. Dr. Feeney spoke on the subject of circadian rhythm sleep disorders in totally blind people. He described how the body clock controls our sleep patterns in 24 hour cycles. But on average, the cycles are actually 24-1/2 to 25 hours. Sleep disorder is often misdiagnosed as anxiety, depression or chronic insomnia. When there is no light perception, the resetting of the body's clock doesn't occur and the body clock will function at its own cycle which is usually longer than 24 hours. Scientists have discovered a melatonergic chemical system in the brain, the next best thing outside of light perception for synchronizing the body rhythms. Dr. Feeney told us about previous studies that showed taking regular doses of melatonin can reset the body clock and realign the various body cycles, but since melatonin is not a regulated drug product, there are no clear directions for its use. Vanda Pharmaceuticals has a drug product called tazanolteon that is similar to melatonin. In short term trials, it has shown the ability to change the body clock in small increments. They are hoping to enroll 160 patients who are totally blind and have sleep or wake problems in a new study. Their hope is to demonstrate the effectiveness and safety of the drug as well as learn more about the disorder. They are looking for subjects between 18 and 75 years of age in general good health not taking medications that will interfere with the measurement of the body clock. There is currently a clinical trial site in Los Angeles, and there are plans to open sites in San Diego, Sacramento and the San Francisco Bay Area.
To inquire about participating in the study, please call 1-888-389-7033.
The second speaker was Danual Sipple, President, Randolph-Shepard Vendors of America, Eau Claire, Wisconsin. He spoke about the future of the program and expressed hope that everyone enjoys it as much as he does. The National State Agencies for the Blind (NCSAB) and the Council of State Agencies for Vocational Rehabilitation (CSAVR) formed an organization called Business Entrepreneur Alliance (BEA) to protect and improve the Randolph-Shepard Act. A white paper prepared by BEA makes about 15 recommendations on how the program needs to change.
Dan spoke briefly about one of the recommendations to form a national nominee agency. This would allow the Randolph-Shepard Program to acquire business opportunities that the state agencies have bypassed and generate greater opportunities for employment for the blind.
ACB Report by Mitch Pomerantz, President, American Council of the Blind
Mitch first spoke on the Pedestrian Safety Enhancement act. Despite unanimous agreement within the blindness community and support from the automobile industry, disagreement arose in Congress unrelated to the bill's language which will probably doom this legislation for the current session of Congress.
Three weeks ago, President Obama signed into law the 21st Century Communications And Video Accessibility Act. As a result, over the next several years, we can look forward to seeing better accessibility of cell phones, on-screen television menus, emergency notices and video-described movies.
ACB was unsuccessful in 2 grant applications to the Department of Education, for ongoing funding of the audio description project, which promotes wider use of this communications medium to the public.
ACB is also working with the Smith-Kettlewell Institute in San Francisco on another grant application related to audio description. He further reported that at the ACB convention this summer, the Monthly Monetary Support (MMS) program reached a milestone of over 200 participating ACB members and friends. Around November 15th, ACB will send out a Fall Fundraising letter to every member of the organization. The letter highlights ACB's successes in 2010 and asks for our assistance in keeping the work and efforts of this organization alive.
Sometime around December 1st, we will see some changes to the ACB Store website. A company called DQ Systems, of Virginia, has agreed to update and modernize the ACB Store website free-of-charge.
Mitch reminded everyone of 2 events coming up in 2011. The first is the ACB legislative seminar February 25, through March 1 in the Washington DC area. He called upon California to again send a delegation to Capitol Hill to make the pitch for our legislative agenda.
The second event is the fiftieth annual ACB National Conference and Convention, taking place from July 8-16 in Reno Nevada.
Mitch then fielded questions from the floor about accessibility progress on the Kindle Ebook reading device and the expected timeframe for seeing results of quiet car legislation. In both cases, he seemed optimistic that progress is being made. Amazon is aware that schools and universities must not use Ebook devices that are inaccessible to blind and visually-impaired students. As to the quiet car issue, he feels that automobile engineers truly understand the safety issue posed by such vehicles.
CCB President's Report
Jeff Thom gave an overview of what is going on in CCB and what to look for going forward. As a cost-saving measure, he expects that K
through 12 schools will someday go to a paperless environment. CCB is laying the groundwork to ensure that visually-impaired students are not left behind in the new digital forms of school curriculua.
Because JetBlue Airways has shown an unwillingness to act on making their website and kiosks accessible, CCB has filed a lawsuit to ensure that JetBlue will work toward making their systems useable by blind and visually-impaired people. CCB is also part of a lawsuit to ensure that the Golden Gate Recreational Areas are made accessible. Jeff encouraged us to provide input on the accessibility of the areas that we have experience with.
Finally, we've entered into structured negotiations with the Cinemark Theater chain to provide audio description in their Northern California theaters. Jeff again acknowledged the new Coachella Valley CCB chapter. He expressed that overall, CCB membership is up and might reach 1400 members by the end of the year.
He thanked and acknowledged the hard work of our former webmaster Joel Isaac who just moved to New York. He then expressed optimism for the new Technical Operations Group that will take over Joel's role in building and maintaining the CCB website. And he thanked Lily McCray for her effort in helping to obtain a $5,000 Kelly Foundation grant to help in our web presence effort. Jeff urged us and our families and friends to participate in the supermarket reward card fundraising programs.
In conclusion, Jeff expressed thanks to both current and past staff members, officers, chapter presidents, and CCB members who worked at his side these past 8 years.
And he assured us that he isn't going anywhere but will continue working hard to make the next president the most successful ever. He was then given a well-deserved standing ovation.
The final event for this session was the election of officers. Hearty congratulations go out to newly-elected President Donna Pomerantz, 2nd Vice President, Roger Petersen, and Treasurer, Peter Pardini. David Hanlon and Ardis Bazyn were elected to the Board of Directors. First Vice President, Eugene Lozano, and directors Lena Bandy, David Jackson and Vince Calderon were re-elected to their current positions.
Catherine Schmidt-Whitaker
The third CCB general session Saturday afternoon with Donna Pomerantz, Second Vice President, presiding. The Invocation was conducted by Reverend Winston Sharp, a member of the Blinded Veterans Association. The United States Marine Corps Color Guard presented the Colors and Hugh Lipscomb, a member of the Blinded Veterans Association led the Pledge of Allegiance.
Tom Karnes, CCB member, introduced the first speaker, Dr. V.S. Ramachandran, MD PhD, Director of the Center for Brain and Cognition, University of California San Diego, who spoke on the topic of "Plasticity of the Brain". Dr. Ramachandran studies how neurons function and respond to eyesight in monkeys and humans. Researchers found that an individual can experience phantom paralysis recovery and reduction in pain by looking into a mirror at the opposite normal functioning hand. Scientists have learned that when a person loses their eyesight, the touch sensation increases because touch sensation is routed to the visual cortex instead of the touch cortex. However, for individuals who were born with no light perception, the touch sensation remains in the touch cortex and does not travel to the visual cortex. More interesting information about how neurons function in the brain are described in his book Phantoms of the brain.
The second topic was "Securing Accommodations on Standardized Tests: Common Problems and Legal Developments" presented by Karla Gilbride, Staff Attorney with the Disability Rights Advocates, located in Berkeley, California. DRA is a cross-disabilities advocacy organization that focuses primarily on class action law suits and some individual cases believed to have far reaching impact.
Standardized tests are taken for entrance into graduate and professional schools and for professional licensure. Access to and an equitable testing experience for people with disabilities is covered in the Americans with Disabilities Act. The law states that exams need to be provided in a place and manner that is accessible. In March, the Department of Justice issued revised regulations that support a list of auxiliary services that include the standard accommodations (Braille, human reader, large print), and screen readers and magnification software to be useable by individuals who are blind or have communication disorders such that the exam measures the affects of test and not disability. There is also discrepancy between documents that are completed by a medical doctor or service professional (such as an assistive technology coordinator), the testing agency relying on consultant determination and the time it takes to complete the request process and hear a decision. Sometimes the decision is a week before the exam and places the individual in a quandary as to appeal or go forward with the exam with modified or no accommodations.
Currently there are two court cases in California and Maryland, against the LSAT for not allowing the use of assistive technology for test takers who are blind. The California court said a test taker who is blind should be able to use assistive technology in the testing environment, while the Maryland court said there were some security concerns, so assistive technology was not permitted.
The Educational Testing Service (ETS) is in the process of developing its own assistive technology software to be used in the testing situation. There remains the issue of people needing the time to practice the use of the assistive technology prior to the examination date. If you are in the situation of needing to take an alternative version of an exam, consider the following advice provided by speaker Gilbride. Have an independent way to monitor the time. Take a copy of the letter granting accommodations for the test with you to the exam session.
The impact of hearing loss and the needs of individuals who have hearing and sight loss were described by Cathy Kirsches, Regional Representative, Helen Keller National Center -- Southwest Region based in San Diego, California. Approximately 1 in 10 people have a hearing loss; one million are profoundly deaf. Ages 3 to 5 are the most critical language acquisition years with an average of 2,000 words acquired by age 5. Individuals who have both hearing and eyesight loss often do not feel their needs are met by entities serving the hearing-loss or vision-loss communities. There is a need for groups such as the newly reconstituted Deaf-blind Committee to focus on the unique needs of the deaf-blind.
San Diego is the only community in the state that provides a comprehensive service for the deaf-blind community (as a result of a bequest from a woman who passed away). The services include transportation and assistance at doctors' appointments, social services and other areas. There is a need for additional programs in the state.
Hearing aids cost approximately $2,500 each. An organization, Hearing More, refurbishes them for low-income clients.
The afternoon session was rounded out with a CCB Governmental Affairs Report by our own Frank Welte, Director of Governmental Affairs for the CCB. See his report in this issue.
The Sunday general session opened with a welcome from Jeff Thom and his reflections on presiding over his last general session as CCB President. Jeff thanked Ken Metz for streaming the convention via ACB Radio. He also thanked the volunteers from the community organizations for their assistance during the convention. A special thank you went to long-time CCB contributors Pinky and Mary Lou. Gabe Griffith, CCB Secretary, read minutes of the 2010 Spring CCB Convention which were approved. Ardis Bazyn, Chair of the Membership Committee, encouraged one member from each chapter to be added to the membership listserv. If you know someone interested in starting up a thrift store using the CCB name, let Jerry Counselor know.
For summaries of the six resolutions submitted at this convention, see the summary in this issue. Jeff Thom encouraged members to submit resolutions, sharing that the committee chair is willing to work with individuals to develop and write a resolution based on topic of interest or concern.
Jeff thanked presidents, Glenda Castle and Jacqueline Jackson, and members from the San Diego Chapter and San Diego Braille Club Chapter for their hospitality and a terrific convention.
The Treasurer's report was presented by Treasurer Chris Gray. CCB's financial reports are now up-to-date; and projections and expenditures will now be available on a monthly, quarterly or upon request basis. CCB has brought in 58% of projected income for the year compared to spending 81% of budgeted expenditures for the year. Treasurer Gray stated to the membership that the CCB Board needs to either significantly reduce expenses and or increase income. CCB can draw upon some resources, but they will not last for many years. CCB has over $1 million in assets, but many of these are restricted funds, such as the Newell Perry Fund. The treasurer pointed out that CCB has been spending $75,000 to $150,000 more than generated income each of the past several years. It is projected at this time that CCB will spend approximately $85,000 more than generated income this year. CCB's investments in 2008 and early 2009 lost approximately 30 to 40 percent as the overall market did not fair well. The investments have begun to turn around and seen significant improvements during 2010. The CD's and money-market accounts providing recent funds are now exhausted.
The treasurer's report was adopted. Chris thanked the membership for their support while he was treasurer. Chris also expressed confidence and support for Peter Pardini as incoming treasurer.
Grant writing is an area that CCB has been exploring. Lily has made great strides in this area. Grants tend to have a specific focus that needs to match CCB's needs and are competitive for the receipt of the grants. There are three ways that each CCB member can assist CCB with generation of income. One option is through store shopping reward programs. Once signed up for the program, you show your card at checkout for CCB to automatically receive a percentage. Stores where CCB is registered include: Food for Less, Ralphs, Vons and Luckys. A second opportunity is to sign up for ACB's monthly monetary support program (MMS) where you can designate CCB to receive up to 50% of your donation. The third program, for those who are eligible, involves completing a utilities program application for which CCB receives a contribution. To learn more about any of these programs, contact the CCB office.
The CCB membership adopted a revision to the Constitution and Bylaws to change the term "convention" to "conference and convention" to more appropriately reflect what actually occurs during the CCB gathering. There was no old or new business. The spring conference and convention will be held at the Doubletree hotel in Sacramento from May 11-15, 2011. The Fall 2011 and 2012 conference and conventions will be held at the LAX Crowne Plaza hotel in Los Angeles.
Other Convention Activities
Note: Because of the length of this report, the activities of the Board meeting will be covered when the minutes appear in an upcoming BC.
Friday Morning
Steven Mendelsohn
The joint session of California Council of Citizens with Low Vision (CCCLV) and the Committee on Access and Transportation (CAT) welcomed Jenine Warden of the US Department of Justice who gave a very informative overview of developments under the ADA. New Title II (state and local government) and Title III (public accommodations) regulations issued by the Department will come into effect in early 2011. Many of the changes are of great importance to people who are blind or visually impaired, including expanded definitions of the technologies that can be used to provide effective communication and requirements that extend accommodations and accessibility requirements to people who accompany people with disabilities, such as parents who are blind.
Opportunities for public input were also highlighted, including through commenting on four requests for comment on proposed ADA rules and including public hearings scheduled for the fall and early winter in at least three cities.
ADA complaint processes have also been updated, including by enabling Title II or Title III complaints to be submitted by email. In this connection, the DOJ has also engaged in vigorous enforcement efforts, including the conduct of compliance investigations to assess the performance of local and state governments more systematically.
Roger Petersen
On Friday morning, the Braille Revival League of California (BRLC) held its regular business meeting, with President Steve Fort presiding. After the business meeting, the program offered presentations by two braille instructors. First, CCB member Evelyn Drewry, a braille instructor at the Braille Institute in San Diego, discussed how braille is taught to newly blind older adults and what the goals and expectations are. Sharon Bacon, braille instructor at the braille Institute La Jolla, who has been teaching 12 years, herself started as an Institute student. The average age of her students is 65 or older, many suffering from macular degeneration.
As we have done for several years, we collected money during the meeting to help defray expenses for a young person attending the Braille Challenge at the Braille Institute in Los Angeles. The contestants' expenses are paid while they are in Los Angeles, but transportation for the young person and a family member is not covered and is a hardship for some families.
Judy Wilkinson
California Library Users of America (CLUA) held its business meeting and elected Judy Wilkinson president, Ann Kysor secretary and Pam Metz to the board.
The BRLC/CLUA luncheon speaker was Louise Zuckerman, head librarian of the Braille Institute San Diego. She reviewed recent developments in distribution of the new players, passing one around for all to play with.
Saturday Morning
Ardis Bazyn: At a breakfast seminar, Dr. Ron Milliman, ACB Public Relations Chair spoke on "Guerrilla Marketing". He suggested that chapters could make use of free bulletinboards; most of the following resources have online versions: listings on radio, TV, cable, and newspapers; churches, stores, service centers and online directories. He also suggested taking advantage of free placement of flyers or brochures in public places: doctor offices, (especially ophthalmologists and optometrists); state services for the blind (some counselors will give your materials to clients); state divisions of the NLS will often include your brochure with their mailings; and service centers. Public Service Announcements (PSA's: radio, tv, and cable will run them if they have room or find them especially compelling. Refer to the PSA Handbook for ACB Affiliates and Chapters (available on the ACB website). Media Releases (press, editorial or news releases: radio, tv, cable, etc. Contemporary sources are: Social media online. Refer to the PR Handbook for ACB Affiliates and Chapters. Guest appearances were suggested as a means of publicizing your chapters or events: radio and tv programs, clubs and organizations, schools and universities, and conferences. Other ways to become known are: using business cards, having a website, listings on search engines, social media (FaceBook, Twitter, Wikipedia, MySpace, and YouTube).
Lorraine Brown
On Saturday morning was the combined meeting of Council of Citizens with Low Vision (CCCLV) and Seniors with Vision Loss. Kathy Holmes-Hardy and Annabel Kirkendahl of Education and Outreach, San Diego County Department of Aging and Independence, presented "Mental Health Is Ageless", emphasizing how common and treatable depression can be among older people. They gave out a packet of information, only some of which was in accessible large print format. Albert Sayles, Executive Director, San Diego County Public Authority, In-Home Support Services (IHSS), spoke on the topic "Living the Life You Want". Suggestions included living a balanced life; setting achievable goals; and self advocacy. Mr. Sayles is a quadriplegic; he spoke while his wife held his speech and the microphone.
Following the break, the presenter was Steven Mendelsohn, a visually-impaired attorney from San Leandro, and an author on tax law and disability. He spoke on the impact of healthcare reform on blind and visually-impaired people and new rules pertaining to our rights as blind and visually-impaired airline passengers. See his article on Healthcare Reform in this issue.
Judy Wilkinson
The Guide dog Users of California (GDUC) conducted its business meeting bright and early Saturday morning. Officers elected included Pam Metz vice-president, Ken Metz treasurer, and David Jackson board member. Some discussion followed about fund-raising ideas as well as discussion of possible taxes which must be paid to the CCB Office from fund-raising items.
Implications of passage of SB 1491 (dealing with in-home training of guidedog handlers) and the upcoming "sunset" of the Guide Dog Board were also discussed.
The program speaker was Charlene Ornelas: who presented her experiences as a member of the Transportation Advisory Committee in San Diego on accessibility of the San Diego trolley. She has advocated for and obtained many important accessibility modifications vital to dogs and their handlers including: tactile areas to wait for car; easy-to-find buttons both inside and outside the car. She gave tips about placing dogs under seats; having them precede you in and out of the car so as to avoid tragedies such as happened recently in Van Couver when a dog, shut outside a moving train car, was seriously injured. She reminded us that all transportation entities must have advisory committees and take public comment.
At the Orientation Center for the Blind luncheon we heard from Joe Xavier, Deputy Director for Specialized Services Division within DOR who reported on the new construction being undertaken at OCB scheduled to be fully completed before the deadline of September 2011; the dorm will have lots of renovations including a new computer lab; elevator to the second floor; small apartments; refurbished dorm rooms. Staffing needs include an onsite maintenance engineer, and rehab supervisor among others. He discussed how local students will be served while the campus is closed for about 6 weeks at the end of 2010. New ideas for updating the curriculum such as classes in dance, yoga and self-defense to enhance social confidence; more familiarity with online resources; apartment-living skills such as budgeting; the idea is to modernize the student's experience for life and job skills.
Catherine Bailes of Blind Field Services let us know how hard her staff has been working despite hiring freezes and mandatory days off.
Another Look at Healthcare Reform
by Steven Mendelsohn
Everyone has heard a great deal about the national health system overhaul enacted last spring. For some people though, the more we hear the greater is our confusion. No article can eliminate all that confusion. Many questions await further federal and state regulations before they can be resolved, and each day brings the emergence of new issues that no one anticipated. However this article attempts to dispel some of the confusion.
1. Will the new law affect discrimination that people with disabilities face in health insurance? Strange as it may seem, until now the refusal of an insurer to cover someone because of a disability has generally been legal.
The new law doesn't address that problem directly, but it will achieve the result of making health insurance more available and making discrimination rarer. It does this in two ways. First, it creates what are known as "high-risk pools" through which anyone who has been uninsured for over six months and who would be denied coverage because of a "preexisting condition" can get health insurance.
The second way in which the new law combats discrimination is that, beginning in 2014 (when many of the new law's provisions come into effect), it will be unlawful for insurers to deny coverage or raise the price of coverage based on health status. Also in 2014 an important new source of insurance called "health insurance exchanges" will come into existance, and insurance offered through these exchanges must be available without regard to health status or disability.
Through legislation passed this September, California became the first state to establish its "health insurance exchange". In this and a number of other ways, this state has been among the most energetic in moving forward with implementation of the wide range of state activities allowed or required by the new law.
All this does not mean that insurance will be cheap, and there is widespread concern whether it will be affordable for many people. Insurers will still have some discretion in setting rates for the different policies they sell, although several mechanisms will exist to prevent insurers from charging excessive premiums depending on how vigorous states choose to be in their enforcement.
Broader availability of coverage also does not mean that policies suitable to every individual's needs will be available. The law specifies certain features that each policy must include, and there will be several levels of coverage to choose among, but there won't be much if any individualization. People will need to choose among the available packages as carefully as they can, in light of their own situations.
2. How will the new law affect the kinds or amounts of medical care and services people can expect to receive? This depends on whether your insurance is employer-provided, individually-purchased, Medicaid, Medicare or Tricare. On the whole, the most important changes at the outset will relate to: the creation of mandated coverage packages (including wellness and preventive services, many with no copayments) that most policies will have to provide; appeal rights from denials of treatments or services (which are made more uniform and are improved); and a host of regulatory, rate-setting and other matters. These will all affect the care and services you receive, but they will do so indirectly. Mostly they bear upon the relationship among insurers, insurance purchasers and government regulators.
The biggest changes in your experience of the healthcare system will come over time as numerous research initiatives under the new law lead to the implementation of new ideas about how to administer health care and about what goods and services are effective and should be provided. There will also be a new emphasis on preventive care and on provider accountability, and this will be manifested in what doctors and hospitals get paid for doing and how much. There will be an effort to increase the role of primary care, that is, of general practice or family doctors, in the management of treatment. This is supposed to mean better coordination, efficiency and accountability in the provision of care, but because of a shortage of primary care physicians, it could also mean longer waits for appointments and for some services.
Many changes will affect healthcare providers including doctors and hospitals, and all of these will eventually affect patients, but these effects will be indirect and as a patient, you may never know when the new law is the source of some change in the procedures or services you experience. In that sense, most of the major changes over time will occur under the hood. For example, hospitals and the government will argue over when hospital readmission rates are too high, because it is widely believed that many people go in and out of hospitals in a revolving door fashion. Reimbursement mechanisms will be developed to reward hospitals for lower readmission rates and to punish them financially for higher rates. This should in turn mean more emphasis on discharge planning and coordination of care between hospitals and the community, and that will affect you, but whether it will result in attention to the unique needs of people with vision disabilities is too early to tell. If new services are developed (such as accessible discharge instructions of the sort the law clearly contemplates) no one will tell you that the new law and its payment policies are the explanation. You can be pretty sure though that when the new law results in a change that hospitals, doctors or insurance companies particularly dislike, they will make sure you know what is at fault and how bad it is for you.
3. How will people pay for their insurance? Beginning in 2014, individuals with incomes up to 133% of the federal poverty level will be eligible for Medicaid, the federal-state health insurance program. This represents a major expansion in Medicaid eligibility, and some people with disabilities whose incomes were previously too high for Medicaid will become eligible under the 133% standard.
Other people who do not qualify for Medicaid and need to buy their own insurance through the individual market, will select from among the policies made available through the health insurance exchange in their state. If their incomes are low, the government will subsidize their premium costs, primarily through a tax credit. This is an unusual tax credit though, because it won't be paid to you when you file your tax return. Instead it will be paid to the insurer on your behalf. Neither the amount of these tax credits nor the value of the medical services provided through the insurance coverage will be "countable" income or resources for means-tested program purposes such as SSI or food stamps.
People who obtain their health insurance through their work will continue to receive their coverage as a fringe benefit of employment. Small employers will be subsidized to provide such insurance.
It is likely that many employers will begin including what are called behavioral health incentives in their plans, including financial incentives for smoking cessation, gym membership or weight loss, and sometimes including penalties for failure to succeed in these goals. Situations may arise in which the measures required by the program are not possible because of a disability. In such cases, punishing someone financially for failure or nonparticipation may prove to be a form of discrimination.
4. If I'm currently receiving Medicaid but would like to switch to private insurance, can I go down to the local health insurance exchange when it opens and buy a policy? We don't know for certain but the answer appears to be no, unless your state refuses to establish a health insurance exchange as some states are threatening to do. If you go to an exchange, you will likely be screened for Medicaid eligibility and given that insurance if you qualify.
5. What about accessibility? The new law places great emphasis on consumer choice and informed decisionmaking about the various insurance options, about the quality of care from different modalities or different providers, about comparative costs and about a number of other matters. To help consumers evaluate all these factors and make informed choices among all their options, the law calls for the establishment of dozens of internet sites by different entities to provide and update information. But the law is not clear that these sites have to be accessible to people with disabilities.
Recent guidance published by the government in the past several weeks appears to signal an awareness of this issue and an attempt to fill in this gap. For the moment what is important to remember is that whatever the statute or implementing regulations do or don't say, the new law does not eliminate general civil rights protections, including the right to effective communication and including emerging internet access rights. There is nothing in the new law to curtail broad civil rights protections, including accessibility rights under the ADA, Sections 504 and 508, and state human rights laws. Furthermore, nothing in the law suggests that these laws don't apply here. You can and should press for accessibility of any information made available to the public under the new law.
And this is true for documents you need to read, understand or sign as well as for websites. Whether informed consent forms that patients must sign, or warning labels, treatment instructions or other materials people need to be able to read, the principles, if not the specific language of the new law, and the provisions of many other laws, all support your right to accessibility.
The new law, although not explicit in requiring these materials to be provided in a form that makes them accessible to people prevented by disability from reading standard print, does make a pathetic start by requiring that certain documents be made available in print no smaller than 12 point type. For the time-being, one may again need to fall back upon general civil rights provisions in those cases where recourse to the law becomes necessary.
6. What about specialized goods and services such as assistive technology? AT comes up in a number of contexts in the statute. First, every insurance policy covered by the Act and sold through the exchanges will be required to offer a summary of its provisions, and these summaries will have to include information on the definition of key terms. If AT or durable medical equipment (DME) are included in the policy, they will need to be defined. This will be helpful because although there are now several education and employment laws using and defining the terms "AT devices and services," these terms are not widely known and have never been satisfactorily reconciled with conventional medical terminology. Additionally, in some instances, "habilitation" or "rehabilitation" will not only have to be defined, but may be required services that have to be included in certain policies.
But in other areas the law treats AT very badly. For example, in connection with the provisions of the new law expanding the availability of home and community-based attendant services as an alternative to nursing homes, the statute indicates that AT is excluded from purchase with what are called "community first choice" funds.
And what about access to specialists? The new law will not restrict access to specialists, including ophthalmologists. In fact, in various ways its emphasis on preventive services including screening may increase such access.
7. What about all these alleged Medicare cuts? Much of the rhetoric that has terrified many older Americans and younger persons with disabilities has reflected widespread misunderstanding of the new law. Some of the alleged cuts in Medicare have involved transfer of activities, functions and payment responsibilities; others involve reductions, not in the size of the existing program but merely in the projected rate of program growth. Many of these cuts will slow that rate but none amounts to actual cuts in the program. Due to concerns over the budget deficit, there is tremendous political pressure building in Congress and elsewhere for further reductions in Medicare's rate of growth or even to shrink the program in the future, but these pressures do not emanate from the new law and the proposed cuts would require further legislative action to be adopted. Many of the loudest calls for Medicare cost reduction come from the same people who frightened seniors during the recent political campaign with charges that the healthcare reform law took money away from Medicare.
In this connection, many readers are familiar with the controversy currently raging over payments to doctors who treat Medicare patients. Unless Congress acts to prevent it, these payments are scheduled to decline steeply, and there are fears that as a result, many physicians will find it economically impossible to treat Medicare patients. This problem is very serious, but it does not originate in the healthcare reform bill. It results from a statute called the Deficit Reduction Act passed several years ago.
A slightly more complex situation exists with Medicaid. Partly through the new law and partly through other provisions, states are currently receiving more federal funds to help pay their Medicaid costs than they have in the past or will in the future. This increase is called enhanced Federal match. But many states, already hard-pressed to deal with massive upsurges in their Medicaid enrollment and spending due to the economy, fear being unable to handle the new requirements, especially after the additional federal funds begin to go away. This can be seen in the Medicaid cutbacks, particularly in such programs as home and community-based services, that have already taken place in many states.
8. Are there any advocacy opportunities for shaping the impact of the new law? Hardly a week goes by when one of the responsible Federal agencies doesn't issue a request for comment or an advance notice of proposed rulemaking (ANPRM) on one aspect of the law or another. Key implementation decisions are also being made as you read this by every state. Through membership, advocacy and other organizations, all those who care to get involved in these efforts can and should do so, either through advocacy efforts, service on any of the numerous advisory committees that will be established, or by other means. From the accessibility issues discussed above, to how your state decides to oversee insurance company compliance, to whether your state goes after available federal funds for developing consumer information resources or for setting up its health insurance exchange, to whether your state makes its Medicaid funding decisions based on serious cost-benefit calculations or simply on the basis of which recipients are the least powerful and able to fight back--these and every other decisions made in the implementation of this vast bill over the decade it will take to roll out are in the end political decisions as much as they are medical ones. Few issues have generated more passion in recent years, but no issue is likely to have as much impact on your daily life as this. If you look for ways to be involved you will find them. Whatever way you feel, use those opportunities to the best of your ability.
Report on State And Federal Legislation
By Frank Welte, Director of Advocacy and Governmental Affairs
State Legislation
The long-delayed state budget for 2010-2011 has finally been passed. While it includes no reductions in blindness-specific program funding, it does include cuts to social services, such as regional centers, and the Healthy Families Program, that will affect members of our community. This budget is mostly a stop-gap measure, so the next legislature will be facing a similar budget challenge next year.
There were a couple of proposals to tax veterinary services and the products sold in veterinary offices, but they were rejected. This is good news for guide dog users. Here's a partial summary of the bills that CCB was following during this session.
CCB-SPONSORED Bills
AB 1787, Swanson, stalled in the Assembly Appropriations Committee. This bill would have required state agencies to include narrative descriptions of regulatory text in notices of proposed regulations. We hope to sponsor similar legislation next year. AB 2430, Chesbro, passed its Assembly committees but was withdrawn from consideration by the full Assembly. This bill would have required agencies that exclusively serve people who are blind or visually impaired and that receive funds from the Department of Rehabilitation, to reserve 20% of the seats on their boards of directors for people who are blind or visually impaired. CCB hopes to sponsor similar legislation in the future.
The following bills have been passed by the Legislature and signed into law by the governor. AB 584, Huber, authorizes the county of Amador and the cities of Jackson, Sutter Creek and Amador to implement neighborhood electric vehicle transit plans. CCB opposed this bill unless it was amended to address the safety concerns of blind and visually impaired pedestrians. AB 1781, Villines, authorizes the city of Fresno to implement a neighborhood electric vehicle transit plan. CCB opposed this bill unless it was amended to address the safety concerns of blind and visually impaired pedestrians. We will work with CCB members in Fresno to encourage local officials to address the quiet car problem in their NEV plan. ACR 162, Beall, Huffman, Hancock, etc. is a resolution that designates the second week of October, beginning in 2010, as Disability History Week, and it encourages school districts, colleges, state and local agencies, nonprofit organizations and businesses, to engage in disability education activities during this week. CCB originally opposed the bill unless it was amended to describe a more accurate history of the disability rights movement in California. We tried with limited success to get such language added to the bill. We will participate in the development of disability history events and curricula to make sure that the history of blind Californians is accurately presented. ACR 177, Yamada, Chesbro, is a resolution commemorating the 20th anniversary of the signing of the Americans with Disabilities Act. SB 1188, codified into statute the precedent set by a 1978 State Supreme Court decision that a court may not use the disability of a parent as the sole reason for denying custody of a child. SB 1256, Hancock, designates January 23rd as Ed Roberts Day, and it requires local schools to hold appropriate observances. It also designates a number of other commemorative days. SB 1491, Senate Business, Professions and Economic Development Committee, among other things, allows licensed guide dog schools and trainers to provide in-home training regardless of the handler's experience. GDUC and CCB supported this bill.
You may recall that CCB held a successful Capitol Day in May. Thirty-one of us shared information with each other, shared a wonderful picnic lunch, and then shared our concerns with our legislators in the state capitol. Thanks again to the Randolph Shepperd Vendors of California and to Art Takahara for underwriting the cost of this event. We intend to hold our 2011 Capitol Day on Thursday, May 12, in conjunction with our CCB spring convention. We are pleased to learn that RSVC will sponsor our Capitol Day lunch. I hope this will be our largest Capitol Day ever, so plan on taking part in this exciting event. Please notify Frank Welte in the CCB office if you plan to attend Capitol Day.
The CCB Governmental Affairs Committee has identified the following legislative priorities for 2011. State ID cards. While individuals with California driver's licenses are mailed reminders of their license expiration dates and given the option to renew by mail, individuals with California State ID Cards receive no reminders of their card expiration dates, and they must renew in person at their local DMV offices. CCB will work with DMV to eliminate this disparity.
Voting access
We have received reports of cities and counties failing to use accessible voting equipment in local elections and of inconsistent levels of compliance with HAVA accessibility requirements in state and federal elections. CCB will continue to advocate on this matter. CCB will seek a state legislative resolution calling on local governments to use accessible voting equipment in municipal elections.
Disability History Week
Resolution, CR 162, which designated the second week in October as Disability History Week, included a distorted description of California's disability history. We will need to work to get a more balanced history included in curriculum content intended for use during Disability History Week.
Regulations Format Bill
We understand that Assemblyman Swanson is willing to re-introduce our regulations format bill during the 2011 legislative session. We will work with his office and with other stakeholders to get this legislation implemented.
Removing the limit on new state accessibility regulations.
Section 4459A of the state building code states that since 2010, no new accessibility regulations can be adopted. We will seek legislation to lift this restriction.
Federal Legislation
We have great news from Washington, DC. Congress has passed the Twenty-first Century Communications and Video Accessibility Act, and with several ACB members in attendance, the President signed it into law on October 8. Some provisions in the bill were weakened as it made its way through Congress, but the final bill is still a big step forward in the area of accessibility. This new law will restore rules that require a certain amount of audio described television programs. It will require telecommunications equipment to be accessible, and it will provide up to $10 million per year for the purchase of accessible communications equipment by people who are deaf-blind. While it appears that the other bills we promoted won't be passed by Congress this year, our advocacy efforts on those issues raised awareness in Washington, so it is likely that more of our representatives will be inclined to address these issues next year.
The annual ACB Legislative Seminar will take place in the Washington,
DC area from Sunday, February 27, through Tuesday, March 1, 2011. We
encourage chapters to send members to this event. Please notify Frank Welte
in the CCB office if you plan to attend the ACB Legislative Seminar. You can
get detailed information about all of CCB's legislative activities by reading
my legislative reports which will be posted regularly on CCB's webside and
distributed on our various email lists. You can listen to the reports by
calling the CCB's toll-free phone number, 800-221-6359, on evenings and
weekends. Check with the California Connection to find out when my next
Legislative Report will be updated. For federal legislative information,
please check with the Washington Connection (800-424-8666) or on the ACB
website, www.acb.org. Please write me at
frank.welte@ccbnet.org
if you would like me to send you my legislative updates and other advocacy information by email.
ACB Convention Report, Part II
by Jeff Thom and Donna Pomerantz
Because the vast majority of BC readers also receive the Braille Forum which has published a thorough report of the 2010 American Council of the Blind Convention since the first part of this report was published, we will provide a shorter conclusion to this report than you are accustomed to seeing. As an aside, if you are a CCB member and not receiving your Braille Forum, please let either your chapter president know or call the CCB office at 800-221-6359 so that we can ensure that you are getting one of the benefits of membership in CCB.
We begin with Wednesday's convention session, which had ACB Secretary Marlaina Lieberg as its presiding officer. The proceedings began with a panel on radio reading services, which opened with remarks from Bill Pasco of Sun Sounds Radio Reading Services in Phoenix. He talked about the many new technologies being used by radio reading services and their capacities to provide services for far more users. As an example, when users can access such a service by a computer or cell phone, significantly larger numbers can be reached than through radio alone.
Mike Duke, ACB member and director of the radio reading service in Mississippi, stressed the need for consumer involvement to help solve problems and, in some cases, to assist a radio reading service in surviving. Larry Turnbull, managing director of ACB Radio and the final panel presenter, discussed the growing collaboration between ACB Radio and radio reading services.
One of the highlights of every convention is the presentation by an NLS narrator, and David Hartley-Margolin from Denver more than lived up to this billing. His indication that reading talkingbooks was the most challenging and rewarding thing he has ever done, just about says it all.
There followed a topic that receives far too little attention in our community: physical fitness. Fitness instructor and ACB member Leslie Spoone led the group in stretching exercises. Doug Powell, a triathlete and ACB member from Virginia, gave an extremely fascinating talk on methods that people can use for fitness and resources that could be helpful. Perhaps the most important lesson from his remarks is that we just need to get ourselves started. Progress will come in due time if we just maintain commitment. Californian Aerial Gilbert provided tips on use of local gyms or fitness centers. Talk to manager and instructors to help design ways that you can use equipment and fully participate in classes. She also talked about one of her passions, that of rowing and the use of accessible rowing machines. The panel concluded with remarks from another Californian, Elizabeth Toumajian, who operates a fitness center specifically designed for use by persons with disabilities.
Wednesday's final speaker was a truly extraordinary individual, Aubrey Webson, Director of National and International Advocacy at the Perkins School for the Blind. He spoke about the United Nations Convention on the Rights of People with Disabilities, which was recently signed by President Obama, but which has not been ratified by the Senate. In this regard, he urged us to advocate for the inclusion in all US foreign aid packages for aid to persons with disabilities.
After taking care of some convention business, Thursday's session, presided over by Treasurer Mike Godino, began with a report from ACB's Executive Director, Melanie Brunson. She highlighted ACB's victory in the Social Security case for notices and other information to be provided in accessible formats, a case that involved several CCB members.
Mr. Godino then gave his treasurer's report. Although we are in a far better position than we were several years ago, we must work quite hard to ensure that we remain fiscally sound while still able to provide the services essential to the blind and low-vision community.
Next, Michael Garrett, chair of the Board of Directors of ACB Enterprises and Services, a wholly-owned subsidiary of ACB, gave his report. He discussed ACB's 7 thrift stores and the work to ensure that they can provide ACB with as much income as possible. Convention Committee chair, Carla Ruschival, reported on a number of convention items, including the work of so many on this convention. Her report contained the information that the 2012 convention will be held in Louisville, the 2013 in Columbus Ohio.
President Pomerantz, and Jeff Thom, chair of the ACB Voting Task Force, conducted a test of the use of a secret ballot, through presentation and a vote on a mock resolution. Essentially, we used the CCB paper ballot method. This experiment was performed in preparation for a potential vote at the 2011 convention as to whether to replace the standing vote with a secret ballot.
Friday's session was devoted to internal business. Elections were held for the ACB Board of Directors and the ACB Board of Publications. All the elected members of the Board of Publications were re-elected. The two incumbent members of the Board of Directors were re-elected and three new members were elected: George Holiday of Pennsylvania, Janet Dickelman of Minnesota, and Allan Peterson of North Dakota. The majority of the day's proceedings were devoted to the consideration of resolutions. Although this report will not go into the content of all the adopted resolutions, we will mention a few highlights of special concern to those of us in CCB. Resolution 2010-01 directs ACB's governmental relations staff and environmental access committee to include in comments on public rights-of-way, support for a requirement that at intersections where there are multiple accessible pedestrian devices, the audible signal phase for each signal must be unambiguously identifiable with its particular crossing; and a recommendation that where digital voice recordings are used for accessible pedestrian signals, differing voices be used to differentiate parallel and perpendicular crossings; andt the vibratory features, making accessible pedestrian signals accessible to pedestrians who are dual-sensory impaired, be the standard in all locations where accessible pedestrian signals are installed.
Resolution 2010-02, introduced through the work of Gene Lozano and other CCB members, puts ACB on record as not accepting the version of disability history that is being offered as truth by other organizations in the disability rights arena, and in particular, the notion that the disability rights movement began with the independent living movement in California in the 1970's. It expresses ACB's pride in knowing that the genesis of the disability rights movement involved people who are blind seeking the opportunity to be fully included in our society; it further demands that every state that has passed laws that permit or require that disability history (included as part of the curricula of elementary and secondary schools) present the significant role played by deaf and or blind people in the disability rights movement. The resolution strongly encourages each state affiliate to become directly involved with its respective state Departments of Education and categorically demand that the role played by sensory-impaired people in the creation of equality for all people with disabilities, be accurately and fully included in such training. It also instructs the national organization to seek funding and support for the development of a national curriculum framework that can provide to states clear and accurate information that can be used to implement these educational opportunities.
Resolution 2010-04 (originally based upon the adoption of a resolution by CCB) urges all public and private entities that operate fixed-route bus and or passenger rail systems, to establish clear, written policies for implementing the ADA's requirements of making route designation and stop announcements, and when establishing such policies, obtain input from local stakeholders including passengers who are blind or visually impaired and other passengers with disabilities who will be affected by such policies. It urges them to incorporate all of the recommendations that have been developed by ACB's transportation committee with regard to the policies that govern the calling of bus stop announcements.
Resolution 2010-11 (again based upon action taken by CCB) directs that ACB urge the entertainment industry to take immediate steps to achieve the following: increased and accurate representation of characters that are blind or visually impaired; more employment opportunities for professionals who are blind or visually impaired; an absolute prohibition on the portrayal of blind or visually-impaired characters by sighted actors; and equal opportunities for actors who are blind or visually impaired to both audition for and portray characters not written as blind or visually-impaired. It also urges state and local affiliates to advocate in a manner consistent with this resolution.
Resolution 2010-20, introduced by Chris Gray, puts ACB on record as regarding the repeated failure of Sprint to meet even minimal accessibility benchmarks as unconscionable and unacceptable. It directs the officers, directors, and staff to communicate our extreme displeasure with Sprint, and demands that Sprint take immediate steps to remedy this situation by working with ACB and its Information Access Committee to develop plans that will lead to the availability of an accessible phone option for the many Sprint users who have remained loyal based on the promise made to them repeatedly that Sprint phones would be accessible.
Resolutions concerning technology, education, the ADA and other topics were also adopted. As a former Resolutions chair, I would like to specifically acknowledge the fine work and contributions that our own Mitch Pomerantz makes in the resolutions process.
The curtain fell on the ACB Convention with the banquet, held on Friday evening. If you have never attended an ACB Convention banquet, you have missed quite a treat. They are always full of surprises, with lots of humor, awards and excellent speakers; this one was no exception. In 2011, you will have an incredible opportunity. Join us for the best ACB convention ever, as we celebrate our 50th anniversary. Convention dates are July 8 -- 16, and the hotel is the John Ascuaga Nugget Hotel Resort Casino. Rates are $87 single or double; add $10 per each additional person in the room. Rates do not include 13.5% tax. You can make reservations by calling the nugget at 800-648-1177; be sure to tell the reservationist that you are with the American Council of the Blind, group code gblind, in order to receive the conference rate. Plans are already being made for a truly incredible week. We hope to see all of you there.
Advocacy 101: Lecture 3: Advocating for Access
by Frank Welte
I believe CCB will only succeed in improving life for blind and visually-impaired Californians if we mobilize our members throughout the state to advocate on behalf of our community. This column is designed to provide our members and chapters with the tools they need to become more effective advocates. The spring, 2010 joint convention session of the CCB Committee on Access and Transportation and of the California Council of Citizens with Low Vision featured a highly informative panel presentation on advocacy issues. The presenters were Lainey Feingold, Margie Donovan, Kim Charlson and Brian Charlson. The recommendations listed below were taken from that presentation. The audio recording of this program is available on the CCB web site. The website is www.ccbnet.org/ConventionArchives.htm. Find the heading for April 16, 2010, and select the link to listen to
or to download the joint Cat and CCCLV session. Throughout our history the California Council of the Blind has advocated successfully to improve conditions for blind and visually impaired Californians. In the past decade or so, we have successfully participated in structured negotiations to address access issues in a variety of situations. Our work has made automated teller machines and retail point of sale terminals accessible to blind and visually impaired consumers.
Various commercial web sites are now more accessible to people who use screen reading software. We now have better access to credit reports, bank statements and utility bills in accessible formats, and The city of San Francisco now has over 100 intersections equipped with accessible pedestrian signals. We have rightly recognized the work of our attorneys in achieving these outcomes. However, the vital role played by individual advocates is not as well known. Each of us can advocate for greater access. Here are steps you need to take to make your advocacy a success. Identify an access barrier that you feel strongly about. Commit yourself to working to remove that barrier, and find others who share your concerns and are willing to help. Brian Charlson is an avid fan of the Boston Red Sox baseball team. He learned that, while Boston's venerable baseball stadium, Fenway Park, had accommodations for wheelchairs, there were no such considerations for guide dog users. Brian made up his mind to do something about this problem. Now, as a result of his efforts, Boston baseball fans and their guide dogs are more welcome in their local ball park. What's more, the relationships that Brian established with Red Sox officials put him in a better position to advocate when he and other visually impaired baseball fans took up the cause of making the Major League Baseball web site more accessible.
Margie Donovan and others weren't satisfied with their lack of access to bank ATM's. The efforts of these individuals to solve this problem laid the groundwork for the structured negotiations that have resulted in the thousands of accessible ATM's that can now be found throughout the United States. Advocacy begins with education. Learn your access rights. If you don't know much about the Americans with Disabilities Act or the Air Carriers Access Act, and you don't know what it means when people talk about things like Section 255 or Section 508, start educating yourself about these laws. If you don't know about the technologies that can make our environment and various sources of information more accessible, seek opportunities to try out these new products. The more you know, the better advocate you can be. Education goes two ways. When you encounter an access barrier, think of it as an opportunity to educate those with whom you do business about access issues. For example, if you go to a store where you can't comfortably use your ATM card because the point-of-sale terminal at the check-out counter has a touch screen and no keypad (so you can't punch in your own PIN number), let it be an opportunity for you to nicely explain to the cashier that this is a problem and that California law requires stores to include accessible keypads on their POS terminals.
Most of the time the first person you talk to will be in no position to solve your problem, so cheerfully ask to explain your dilemma to a supervisor. Then, patiently and persistently, work your way up the chain of command until you get in touch with someone who has the power to fix the problem. If you need to communicate in writing and you don't feel confident composing an appropriate letter, feel free to ask me to help you write it. Once you've started your advocacy, carefully keep records of your activities. If you're dealing with a particular retail establishment, save sales receipts, so you can prove that you are a loyal customer. Keep a log of your contacts, including dates, times, the name of the person you talked with and the outcome of the conversation. Save copies of correspondence, including email messages. These records are particularly important once you get up to the corporate level.
All advocacy requires follow-up, so be politely persistent. It will be your responsibility to follow through on complaints. After making your first complaint, give your contact person a little time to respond to you, but don't wait any more than a month before you make a follow-up contact. Then continue to regularly communicate with the company until you've resolved your problem.
Don't let your emotions control your behavior. Angry outbursts and other rash actions won't help your cause. As you are working with the company to find a solution to your access problem, remember that you're not advocating just for yourself. Try to take the needs of others into account. While one particular solution may work for you, it may not work for other people with disabilities. Try to think of what would help someone who is totally blind, someone with low vision, someone with difficulty hearing, someone with limited hand dexterity, etc. This can best be accomplished by getting people with a variety of disabilities involved in your negotiations.
Find others who share your concerns and passion and enlist them in your campaign. The more you can involve other advocates in your project, the louder your voice and the stronger your advocating position will be. Seek out someone in the company who can champion your cause.
At some point in this process, you'll know if it's time to bring in a disability rights lawyer. Your personal advocacy activities are necessary to lay the groundwork for any legal action. You may have to make several contacts with the lawyer to get him or her to take up your case. Again, be politely persistent. CCB has worked with our attorneys, Lainey Feingold and Linda Dardarian, on many successful structured negotiations. You can contact Lainey by email at
lf@lflegal.com and her website is
www.lflegal.com. You can call Linda at 800-822-5000. Once the lawyer has taken on the case, you must stop all direct contact with the company involved in your dispute. Let your attorney handle the problem. Give your attorney copies of all your documentation, and forward all correspondence from the company to the lawyer. During the negotiation process, you must be available to the lawyer as a resource. Be available to demonstrate your problem and test possible solutions. The process takes time. For example, it has taken an average of from one to two years from the time that a person has begun trying to get accessible POS terminals installed in a particular store, until the store chain has finally put in the terminals. After the settlement you will probably be called upon as a subject matter expert to help monitor the company's compliance with the settlement's terms.
Finally, once the problem has been settled, and a new level of accessibility has been achieved, it is important for all of us in the blind community to take advantage of that access to justify its existence. Also, when we encounter companies that do things right, make it a point to thank them for the good things they do. If you'd like to learn more about the subjects discussed above, feel free to call me at the CCB office or send me email at
frank.welte@ccbnet.org. Also, I send regular email bulletins to interested advocates. Let me know if you'd like to receive these bulletins.
