Posts Tagged ‘orientation and mobility’

Living Visually Impaired in Prescott Arizona — The 2016 Story

July 24, 2016

Living Visually Impaired in Prescott Arizona — The 2016 Story


If your vision is beyond correction by traditional medical and optical procedures, if you are anticipating this situation, or you are assisting someone like this, you need resources and training known as “Vision rehabilitation”.


Good news! Technology and well known practices offer affordable techniques to reduce many vision limitations to inconveniences if you’re willing to tackle the learning curve. Bad news! Prescott is limited in its access to rehabilitation personnel, awareness of possibilities, and diffusion of people who can help each other.


Below are resources collected by a Prescott resident who maintains vision loss coping skills after reaching legal blindness a decade ago. There’s plenty of room to improve the community resources. Please consider action, suggestions and collaboration for everybody losing vision in these days of abundant technology and information sharing.

What is Vision Rehabilitation


Useful techniques range from marking appliance settings by sticky dots through using a smart phone to read books, identify money denominations, and participate in social media. “Active Daily Living” refers to these sticky dot tricks and myriad organizational tasks formerly taken for granted. Serious safety concerns are addressed by “Orientation and Mobility Training” for climbing stairs, walking with the miraculous long white cane, and crossing streets. Gaining or maintaining computer communicationskills requires adapting to magnification or audio interaction or gesturing on a touch screen smart phone.


Sensitive interpersonal skills come into play when a conversation partner must be identified by voice or when sighted assistance must be requested. All these are conquered by learning and practice, leaving only the misery of transportation until the day of civilized public transit or safe, affordable driverless cars.

Where does one start recovering from vision loss?


When the page text becomes wiggly or haze surrounds you or objects jump into your path, eye doctors may help for a while, but there’s no miracle cure for effects of aging, sunlight, and genetics. Struggling to drive, read, walk, recognize faces, or see computer screens tell you it’s time to find vision rehabilitation. Medical interventions (except for cataract removal) rarely restore vision. Don’t deny, bargain, get angry, or become dependent when it’s time to learn new ways of doing things.


A great starting place is Macular Degeneration Support (mdsupport.org). You’ll find ongoing discussions about treatments, vitamins, iPads, good lamps, photography, travel, smart phones, and just about everything a Macular Degenerate lives with. We share secrets, such as the frequency of visual hallucinations called Charles Bonnet Syndrome. Guide books and tips abound. The community is international and multi-generational.


Another great resource is the “Eyes on Success” weekly podcast interviews with vision loss survivors, eyesight professionals, technologists, hobbyists, sportsters, and employed workers. A friendly pair of retired scientists in Rochester NY, one blind and one sighted, have compiled a library of easy listening MP3 files and show notes.

Where do I go for local help?


Locally, here are resources beyond the vision medical professionals who do not customarily offer vision rehabilitation as described above. Veterans have great residential training in Tucson. Students grow through school disability services and special education programs. People seeking jobs have state Department of Economic Services special programs and assistance to work. Otherwise retired people must generally develop and implement their own rehabilitation programs.



  1. The ‘People Who Care’ nonprofit offers “Confident Living” introductions to topics in Vision Rehabilitation and Causes of Vision Loss. Limited transportation and other elder support services are also available. Six-week seminars are presented when funding is available.
  2. Georgeanne Hanna is a contact with and certified rehabilitation contractor for state services that also assist retired individuals. Her phone is 928-775-5857. Watch for Public Service Announcements. Orientation and mobility trainers can be imported at state expense upon request.
  3. The Disability Empowerment Center (formerly New Horizons Independent Living center) provides independent living services for people with various disabilities, and a transportation system based in Prescott Valley. Call and ask whether vision rehabilitation services are currently available.
  4. Yavapai Library Network sites have assistive computers for people who know how to use magnification and audio assistance. Contacts are available for the National Library service “talking books” program.
  5. YC OLLI (Osher Lifelong Learning Institute) offers occasional workshops on vision and hearing loss adaptation.
  6. Prescott Fine Arts Theater honors requests for front row seating for visually impaired people and companions.
  7. Lions clubs underwrite medical and optical services for low income persons and occasional publicized events. Clarification of their services would be appreciated in the comments of this website, especially to identify matches with needs expressed here.
  8. Warning!!! Former organizations now defunct include: Northern Arizona Vision and Hearing Loss, “old blind center”, Yavapai Association for Blind and Visually Impaired (YABVI), “new blind center”. Check out carefully Daily Courier articles for dates referring to services gone from the troubled trail of Prescott vision supporters.

In summary, People Who Care Confident Living Seminars and state DES rehabilitation coordinators are the primary currently active resources. A mobile person losing vision should also consider relocating to gain a full multi-month training program from a facility such as Southern Arizona Association for Visually Impaired.

What help is available from government?


  • AZ Department of Economic Services supports a local vision rehabilitation professional (see above), special services for vocational training, and limited assistive technology. An online directory is available.
  • In 2014 Prescott established Disability and Accessibility coordination mandated by the 1990 American Disabilities Act (A.D.A). Call the city information line or http://www.prescott-az.gov/accessibility/. The federal ADA.gov website expands on citizen rights, organization responsibilities, and procedures for grievance.


    Many cities have a Disability Services Coordination council based in the Mayor’s office, alas not Prescott, but maybe in Prescott Valley. Audio alerts for street crossing are available only on Willow Creed Road near Embry-Riddle but not downtown. Sidewalk barriers, icy patches, overhanging branches, and unsafe construction should be reported to City Streets and Code Enforcement (they do respond). Visitors to downtown Prescott should not expect comfortable, safe walking conditions.

  • with A.D.A. enforcement, airlines, banks, and hospitals have trained personnel for providing equitable services. PHX airport provides walking guides through TSA to your gate (tell before checking in). Notable within Prescott are bank “talking tellers” for automated cash withdrawal (e.g. Chase Bank). Checkout devices at stores are now equipped for accessibility and privacy, e.g. typing in a PIN, but may not be enabled or known to checkout personnel.
  • social Security offers documents and transmittals in electronic formats on CD.

What do blindness support organizations offer?


The following groups are knowledgeable about all aspects of vision loss and advocate for improvements that benefit people with disabilities. Organizations that accept charity contributions are not necessarily well informed about Active Daily Living, Orientation and Mobility, assistive technology, the A.D.A, or the interface between medical and social service systems (but they should be). “Helping the visually impaired” requires education, awareness of needs, and accountability.


  • The American Council for the Blind (ACB) and National Federation of the Blind (NFB) advocate and educate on blindness issues that benefit people with all kinds of vision loss. State affiliates hold annual conferences and support local chapters (but not currently in Prescott).
  • The American Federation for the Blind (AFB) has special websites for seniors and is affiliated with the Vision Aware service. A monthly newsletter evaluates technology
  • MDSupport.org specializes in macular degeneration with myriad free downloadable guides and an ongoing support mailing list.
  • Books and newspapers are available from Bookshare.org, with a library of over 400,000 fiction/nonfiction, adult/adolescent volumes readable on the website or downloadable to book readers. The NFB NewsLine offers national newspapers and magazines in various formats and reading services, available also through BookShare. National Library (NLS) provides narrated books played on free) devices.

How about technology?


  • PC and Mac computers have built-in magnification and voice support. For Mac, VoiceOver is a click away while for PC a free NVDA package is easily installed. Various $1000 commercial products offer versatile magnification and audio with support and training. These “screen readers” enable a synthetic voice to speak web pages, documents, and buttons or typing. The technology is great, but the learning curve is steep and trainers are scarce.
  • Elegant hand-held devices can read books from NLS or Bookshare, notably Victor Reader Stream and BookSense. Amazon Kindle and Nook devices are not usable without sighted assistance.
  • The smart phone has put mainstream devices into the hands of people without full vision but with sufficient hearing. The iPhone, iPad, and iPod Touch have Voice Over built in to read buttons as fingers glide across the screen as well as text in mail and web pages. Book reader apps from Bookshare, Apple, NLS, Amazon enable downloading and listening to books, magazines, and documents.

  • Smart phone apps provide walking navigation, location awareness, remote identification of photographed objects, reading money, and other assistance. Many games and apps are fully accessible. Speech recognition increasingly replaces keyboarding. Apple devices (iPhone, iPad, iPod Touch) are fully accessible by voice (use Triple Click Home to start). Android devices lag Apple in both capabilities and training, varying across models and manufacturers. Verizon and Apple store personnel can assist in turning on these devices but only practice will determine whether they meet vision needs.


  • The blindness communities maintain a “Internet radio network” of interviews, demonstrations, and advice on all topics related to vision loss and especially technology. Accessibleworld.org, EyesOnSuccess.net, and Hadley.edu have highly informative weekly updates. These are MP3 files for subscription and downloading as podcasts via iTunes or podcatcher apps.
  • Hand-held readers also serve as recorders for presentations, memos, and bookmarks. Some also provide radios with audible controls.
  • Apps can remotely recognize and label record contents of files and food cans. Color identifiers, GPS systems, and talking thermostats exist to overcome daily eye sight annoyances. The coming Internet of Things offers in-home devices that recognize speech, read out device information, and operate remotely. Be sure you understand the surveillance capabilities of such devices as well as how failures can lock you out or inadvertently activate other devices.

  • Twitter social media is a river of news about technology and blindness under the keyword #accessibility and people like slger123 and all major vision-related organizations and federal agencies.

See the “Talking Assistive Technology” page on this website for links to products.

Where can I get more information on vision rehabilitation in the Prescott region?


This web page is your current best bet for information. Its author is a legally blind technologist. She survived the sparse services available in Prescott by seeking resources for self-rehabilitation. She has attended national and state assistive technology exhibitions and visited vision rehabilitation centers in Tucson and San Diego. She’s a user of assistive technologies and a constant tracker of external services. Ask her anything about vision rehabilitation and she’ll find an answer.


Please add comments with additional services, corrections, or opinions. Anyone interested in taking over this web page and keeping it up to date is welcome to the information compiled so far.


Isn’t it time Prescott had full service vision rehabilitation for retired people with vision loss? Following the MDSupport motto “No one should leave an eye doctor’s office thinking their situation is hopeless”, vision loss is a journey of learning and adaptation and challenges that build on established rehabilitation practices and abundant technologies. Why can’t Central Yavapai have a branch of such a facility? Advocacy needed!!!

Send corrections and additions to slger123@gmail.com or leave a message 928.445.6960.


Links to Resources

Other Posts in “As Your World Changes”

This blog started as a way to reclaim writing skills. These earlier posts convey the spirit of a changing world as vision degrades and skills increase.

Warnings About Web Misinformation


  • Web searches in Google, DuckDuckGo, Bing often link to misleading or outdated web pages. Sometimes links go to local white/yellow page directories driven by advertising.

  • The following organizations are defunct: Northern Arizona Vision and Hearing Loss Center; Yavapai Blind Center; YABVI Blind Center;; and related terms. There is no blind center on Washington Street, vacated in 2007. The phone number 928-778-0055 is disconnected. If you receive a brochure or read an article about this location, facility, or phone number, please correct the mis-informant. YABVI (Yavapai Association for Blind and Visually Impaired) appears to be a restructuring of a previous organization, now managed funds by a group of eye doctors.

  • No attempt is made here to assure accessibility of web sites beyond ascertaining content using Firefox with the NVDA screen reader. Some resources use PDF documents difficult to use with a screen reader.

  • Resources here focus on “vision rehabilitation” rather than medical treatments typically billed to Medicare or insurance. Vision Rehabilitation includes: Orientation and Mobility Training, walking with a long white cane and safely crossing streets; Active Daily Living, tricks and techniques for optimizing remaining vision in everyday life; reading newspapers and books; and using technology by magnification or voice interaction.

National Level Organizations

Vision Information and Support

Federal Government

Under the Americans with Disabilities act we can claim equal access to most resources. However, “civil rights are not self-enforcing”. The following websites address issues of equality and offer many paths to further public information.

  1. Disability.gov, connecting the disability community with information and opportunities drill down by state and topic, e.g. to Arizona and Transportation.
  2. White House Disabilities Coordination including monthly conference calls
  3. Federal Elections Help Americans Vote Act implemented by Yavapai County, supporting private and independent voting on site
  4. FCC 21st Century Communication Act covers cell phones,audio and video descriptions, and PLAN, the Personalized network for public safety alerts
  5. ADA.gov, the law, policies, enforcement’s.Dept of Justice and YRMC settlement on training citizen complaint invokes A.D.A. to change procedures and train staff

State Level Organizations

Government

  1. Directory of services from Department of Economic Security

  2. AZ Governor Council on Blind and Visually Impaired

  3. SunSounds Reading Services
  4. Assistive Tech Training Center (Cottonwood)
  5. National Library Service Talking Book Arizona contact

Resource Centers

  1. SAAVI (Southern Arizona Association for Visually Impaired (Tucson), website describes full service vision rehabilitation
    Arizona Center for Visually Impaired (Phoenix)
  2. (PDF) ViewFinders Low Vision Resource Directory (PDF)

  3. VRATE, Vision Reabilitation and Asstive Technology Expo is held annually in Phoenix, free, excellent coverage of state-wide capabilities

  4. Arizona Assistive Technology Exchange

Chapters of national organizations

  1. AZ Council for Blind azcb.org
  2. NFB (National Federation for the Blind) Arizona Resources

Yavapai County and Prescott Area

Government

  1. State Department of Economic Security Rehabilitation sustains local vision rehabilitation and coordinates orientation and mobility training.
  2. Prescott Public Library may have screen readers on notebooks and vision aware Computer
    Mentors. Also provides membership with National Library Service.

  3. City of Prescott Accessibility and disability coordination (A.D.A) Meeting the A.AD.A law!!!

Nonprofit and other services

  1. Georgeanne Hanna Certified Vision Therapist and Certified Low Vision Therapist, georgeannehanna@gmail.com, phone 928.775.5857. Contact directly to arrange state rehabilitation services.

  2. Disability Empowerment (formerly New Horizons Independent Living) Center (Prescott Valley)
  3. “People Who Care Confident Living Seminar (

Technology Assistance


  1. Verizon can turn on iPhone VoiceOver, Triple-click-home
  2. Best Buy sells Apple products with good accessibility (iPhone, iPod Touch, iPad) and Android tablets with unpredictable accessibility
  3. Chase (and maybe other) banks have “talking ATM” machines that read menus into earphones to dispense cash and perform other services.
  4. Yavapai College Osher Lifelong Learning Institute offers a track of technology courses.

  5. Prescott MAC and PC clubs have held programs on assistive technology


Revised July 25 2016, slger123@gmail.com
“As Your world Changes” article on “Living Visually Impaired in Prescott AZ” — 2016 http://AsYourWorldChanges.Wordpress.com

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What Vision Losers Ask in Searches

April 19, 2010

Personal Themes: Planning, mobility, advocacy, citizenship


In the preceding post on search terms about technology, I recapped some lessons about technology assisting me as a Vision Loser: the wonderful free NVDA scrreen reader; gaining independence using a talking ATM; some technicalities of working with the generally usable WordPress platform; Applemania for assistive technology; and the over-arching theme of TTS, i.e. text-to-speech with synthetic voices. The terms people use to reach my blog expand my range of topics even if I have to make up an interpretation for the searcher’s goal. This post covers more personal than technological topics.

Terms and Basics: “Legally blind, disability, and personal meaning”

Search terms used to reach this blog

  • creative activities for the legally blind
  • what is print-disabled.
  • can a legally blind person join the navy
  • legally blind disability
  • culture of disability
  • identity after disability
  • who are the legally blind non-readers?
  • are legally blind people fully blind
  • jobs for us citizen for partially blind
  • forms for legally blind declaration
  • adversity as change in disabilities
  • resilience partially sighted
  • disability resilience visual impairment
  • orientation and mobility trainer
  • the use of technology and loss of eyesight
  • declaration of legally blind

VisionAware glossary of vision-related terms offers one framework. This topic is certainly a matter of curiosity for both sighted and Vision Losers like me. Frankly, I am rather indifferent to precise terms and refer to myself as blind, partially sighted, visually impaired, disabled, etc. according to how I think the person I’m communicating with will understand and react. More important, I believe, is that the Vision Loser can be matter of fact and comfortable about the situation. Of course, practically speaking, there is that extra box to check on tax forms, that ID card or driver’s license card, the signature line you’re asked for, and many other details of personal and financial transactions. To my knowledge, there is no moment you get a stamp of “legally blind” but rather a process lets you know it is happening. In fact, vision may fluctuate up and down along scales of acuity and bredth of field that was for years my diagnosis of “stable, but precarious”. In fact, I walked through TSA checkpoints with a white cane in one hand and a still valid driver’s license for ID and even once rented a car from Hertz when my companion couldn’t get a debit card approval. No one ever asks “hey, are you legal?” except in bars. And often the situation itself such as bright lights may define whether your sight is functionally useful. What I find more interesting and challenging is planning and navigating the rehab maze. That will be a future post. For now, the above terms just identify some of the ways people look for information.

Using white, symbol, identity canes

  • white cane low vision
  • how to use symbol cane
  • legally blind safety issues
  • white cane with GPS
  • starting to carry a white cane
  • he walks with white cane
  • define white cane
  • waving cane accident car 2
  • blind man’s Harley: white canes and gend 2
  • slim line white cane
  • do i need a white cane with my vision
  • use white cane
  • white cane adjusting
  • blindness and adjusting to the white can
  • tip white cane
  • symbol cane
  • symbol cane for low vision
  • the cost of not using my white cane
  • blind woman walking with white stick
  • white stick and drivers have to stop
  • using the white stick
    safely

  • no sidewalks for the disabled
  • measuring for white cane
  • using an id cane
  • emotional response to using a mobility cane
  • partially sighted use of white stick
  • white cane technologies

Terminology: identity cane in U.S. called symbol cane in U.K. and differs from ‘long cane’ used for practical mobility. Colors also may differ internationally, white in the U.S.


Back when I was starting to require mobility assistance, I wrote about the values of using an Identity Cane. This instrument was a puny stick valuable for poking around and showing others of my disability, but wasn’t functionally useful for walking or climbing stairs safely. Due to the sorry state of social services in the U.S., notably retirement-focused Arizona, it took a long search, months after I really needed help, to find an OMT (Orientation and Mobility Trainer). Gifted from the state with a $35 sturdier cane matched to my height and walking style, I gratefully received a few lessons in waving the cane and negotiating street crossings.

Here’s the answer to the basic question. You use the cane either tapping or sweeping ahead to tell of rough surfaces, dips, curbs rocks, people’s feet, etc. Meantime, using residual vision, you watch for upper body hazards, like trees, mailboxes, street signs, elbows, etc. Climbing stairs, I use the cane to tap each step then sweep when I think it’s a landing, with bottom steps being the most treacherous. Crossing streets requires far more strategies of listening for and watching turners and signal timings, with the cane displayed or waved to attract drivers’ attention. That
is how I do it, probably not completely according to rules, but I haven’t been to the Emergency room in years. Note: as to measurements, this does require the help of an OMT person watching you and your own personal experience with a length that feels comfortable. It’s a matter of a few inches more or less. Furthermore, at first your arm gets tired so a few trial lengths may be affected. My OMT gave me two specific useful pieces of advice: (1) avoiding a nasty step on the path to my lifelong learning classes and (2) make yourself “big” and noticeable at intersections.


My current problem is actually when people try to help and distract me from the synchrony and concentration of using the cane. Often companion walkers get in a hurry or talking and tell me something like ‘5 steps’ when there are are 4 or 6 or, never matter, let me take the steps at my own pace and style. Most of this training is simple but just requires someone to nudge you out and help build confidence, then practice and learning one’s own mistakes and recovery strategies. This is a difficult interpersonal issue as to how to refuse help as well as when and how to ask for assistance.


Another concern is becoming a hazard myself, like tripping a shopper looking at grocery shelves. Or tangling canes when walking with someone with their own mobility difficulties. And, I’m currently having a real phobia for street crossing, with too many instances of drivers entering the crosswalk a few feet away and just plain realization of the dangers of inattentive drivers in a hurry. Now, we need a national law to install yet another electronic gadget in cars, receivers from a cane telling drivers we’re around — like your GPS might say ;blind pedestrian at corner waiting to cross Willow Creek. Please wait’.

Accessible websites and advocacy

Terms asking about accessibility

  • “heading list” + accessibility
  • computer curb cuts wikipedia
  • bad accessibility websites
  • page layout of whitehouse.gov
  • sites with bad accessibility
  • image alt tag checker
  • how do i find my alt tags for my picture
  • headings accessibility test
  • universal design for web applications we
  • pdf crippled
  • Google book search accessibility


It comes with the territory that something in society makes a Vision Loser feel like a real loser, for avoidable reasons. Those ‘advocacy juices’ start to flow, you learn why social practices are so harmful, find and apply constructive advice, rationalize compromises, use mistakes as educational opportunities, and generally contribute to the betterment of society. Well, that would certainly be nice but if it were that easy a few active complainers could clean up the messes in society that hamper our ability to operate like everybody else. For me, with my lifelong exposure to the Internet, web accessibility is a perfect advocacy focus. For others, safety or OMT or low tech devices or public transit or rehab or costs might blend professional backgrounds and advocacy missions.


This is my major criticism of inaccessible web sites. If only headings were used to organize and label page parts, screen reader capability to navigate by headings could be fully utilized. Literally hours of wasted time extracting mental maps of pages or tabbing around the wrong lists could be avoided. Indeed, I think failure to use headings is a root cause of many accessibility problems, e.g. lists of unrelated links, maintenance messes, … When I see a page using an ‘h4’ only, I know page authors don’t understand separation of content and presentation nor are they using established progressive enhancement engineering processes. My recommendation in my complaint to site owners is to attend accessibility courses, read myriad blog posts, track #accessibility and #a11y on Twitter, and read Chisholm and Mays ‘Universal Design for Web Applications’. Other culprits, however, are web page editing and content management systems that, hopefully, will soon be superseded by projects like Drupal with accessibility as an important selling point. H1, H2, H3,… is so fundamentally sound for both writing and reading web pages.

Citizenship and Electronic Voting

Terms

  • the nitty gritty of electronic voting

I wrote about my experiences in the 2008 primary and national elections with a generally favorable impression of the usability of the voting tablet. However, voices sped up or slowed down and I had no way of validating the printed output. The voting system vendor Premiere Election Systems is now defunct, with a rather poor history of counting accuracy complaints. Who knows what’s next for this autumn’s national and local elections. It would be great to have a more common interface among similar devices: voting, ATM, store check-out, remote controls, thermostats,… Common functions include: navigation, voice control, selection, confirm/cancel, etc. for users and various administrative setup of ballots, etc. Foremost is that ‘all things should talk to users’ and eventually hold on-board speakable manuals and environmental information. Just
wishing…


My main message on citizenship is that vision loss should not be a disable for citizenship but we have to be take the initiative to make the voting experience productive. For some people, independence and privacy are not big issues, so taking a sighted person to mark you ballot feels fine. For others, like me, I want to stretch the system and use voting as a teachable moment for family, friends, and community. That’s a tall order but legally mandated. For U.S. citizens now is the time to find out how you can vote in the upcoming elections, like calling or visiting local election boards. This was a good experience for me and even helped the election officers to watch me at work.

Remembering Sputnik: Just a memoir moment

Terms used to reach this post

  • impact of sputnik on mathematics
  • how did sputnik affect America mathematics?
  • how did Russia create sputnik first
  • sputniks effect on the public
  • how did sputnik effect the future?
  • political sputnik
  • how did sputnik effect public education
  • how did sputnik affect education
  • world effects of sputnik
  • sputnik tv public
  • bay of pigs then sputnick song
  • computing arpa “von braun”
  • sputnik lead to modern technology such a
    space race 1950’s and military industrial 1

This topic has nothing to do with vision loss or accessibility but rather is a memoir and personal history of Sputnik. For many scientists and technologists in our 50’s and 60’s Sputnik was a notable national event (1957) that precipitated funding for and attention toward math and science education. Summer institutes for high school students and teachers, fellowships, and, drum roll, DARPA and the advent of the Internet. Our Social Media class has proposed lifelong learning activities where we collect, post, and record our experiences and related materials for our progeny and educational systems. Amazingly, most of us had little American history covering WWII, Cold War, etc. just lived through it haphazardly. Today’s students also don’t get much modern history, so our event recollections, like the NPR story Corp project, might provide legacies and primary materials.

Thanks for asking!!

Search terms provide really useful feedback.

Disabled? Sorry, *NO* insurance for you!

August 19, 2009

In line with current U.S. rumblings about our massively messed up health care system, here is my personal diatribe against insurance profiteering, and appeal for attention toward disability services. I don’t usually post negative stuff or rants, but we’re all angry and my story of disability resilience is part of the record submitted in support for a public option. Other Vision Losers may find comparable experiences and those not yet disabled may gain some insight about life becoming disabled in early retirement before Medicare in these dark ages of private insurance.

Note: there are many local geographic references, with some Prescott AZ Resources for Visually Impaired.

Background

I have myopic macular degeneration, a lifelong progressive deterioration from birth or growth spurt causing elongated eyeballs and correctable near-sightedness until too much retinal atrophy. My last sliver of good vision left in 2005 taking driving, print reading, face recognition, and surrounding detail into a swirling world of haze. Glaucoma onset at age 60 now costs about $800/year in standard meds that control eye pressure. I have had no other treatments since 1998 with cataract removal following extensive surgery for retinal detachment in 1993. I currently have 3 retinal exams per year with the usual tests.


I am single, not a veteran, did not seek employment after job termination in 2005, preceding my eligibility for employment-based disability benefits by about 6 months. I easily qualified for social security disability at age 63 when I was using COBRA health insurance at about $7000/year.


I have basically provided my own rehab and general disability support, easily totaling over $15,000 out of pocket. Following legal blindness in 2006 I retrained myself in computer use and began seeking orientation and mobility training (OMT) for navigating with a white canes and crossing streets. After applying to AZ social services, I waited over a year for this critical safety and independence training with only one trainer in the county, who quit from low pay. Eventually, after crying at a local low vision information group, a school special educator gained state certification and provided a few lessons and a $35 cane. I am truly grateful for the trainer who kept me moving forward when I was becoming home bound. Second Sight local rehab and People Who Care provided low vision overviews but covering information I had already learned myself.

Health “Insurance” to Susan: Sorry, you own your disability until Medicare.

At end of COBRA in late 2006, I found it difficult to get response from United Healthcare (in Florida) on continued coverage but expected costs over $10,000. AARP insurance rejected me outright because of the 3 glaucoma meds which they would be forced to cover. My professional organization, IEEE, had just suspended its health insurance offerings. I was surprised to find no possible configuration of insurance for an otherwise fit pre-medicare retiree. Turning to a local broker, I found the only choice, at $3500/year, with Blue Cross of AZ which demanded waiver for related eye condition costs. Note that I would have become eligible for Medicare 2 years after admission to social security disability which turned out to be just after I reached age 65 anyway. Isn’t it ironic that the deterioration of a few body cells at the wrong time can alter one’s retirement resources by so many factors?


Like many people independently “insured”, I but down visiting doctors in expectation that any condition occurring after start of insurance would be considered pre-existing, i.e. subject to rejection or rescission. I was basically only covered for accidents. Ironically, my inability to gain OMT increased my chance of accidents out walking or getting around. Indeed, in 2004, a decorative rock near the Prescott court house sent me to the ER for five stitches at about $1000. Inevitably, disability increases medical costs, even for insured people, if the social context, the physical environment, and safety training are minimal or nil.


One effect of visual disability is the extreme difficulty of getting usable health insurance information. I’m as Internet adept as anybody, with email since 1977, but the Medicare, prescription drug, and health insurance websites and documents are painful to use, requiring hours of work and absorption of information in memory. Now, I’m good at web stuff, but filling outh pages of forms is beyond my ability, hence I resorted to a local broker to do this for me, accepting their offerings and trusting their advice. Note that I do have personal helpers, in-house teenagers, but not up to handling complex medical forms I cannot read to check. I also felt that prescription drug policies were partially hoax as I could not find a way to match 3 standard glaucoma meds with 165 choices all couched in weasel words. A consumer protection action could well be applied to make all policies simple enough that even a visually impaired non-Ph.D. had a chance.

My Personal Feelings

  1. The Medicare disability gap, no help for two years, is outrageous. Here is a mature individual adapting their personal life, trying to maintain productivity and independence, seeking but finding only minimal social services, with this gap at the worst possible moment. Who thought of that torture for the permanently disabled?

  2. Social services: rehab are available only if you’re working, want to work, veteran, in school, or really poor. Near retired are on your own. I called everywhere to find OMT and get in touch with local low vision education resources. I was willing to pay for a consultant to guide me at a faster pace, but no such person existed. There were none when I needed them, nada, just a waiting list. Eye doctors refer to low vision specialists, located in Phoenix, who pushes exorbitantly expensive optical devices. Instead, being a technologist myself, I attended an accessibility exhibition in L.A., found podcasts and product demos, and, at a cost of nearly $15,000, assembled my own assistive technology regime. I also began writing a blog at https://asyourworldchanges.wordpress.com to share my experiences with others in the same boat.


    Just imagine how hard it’s going to be on both the services and citizens as more baby boomers lose vision and need both mobility and computing re-training? There are standard occupational and educational training programs but the jobs are ill-paid, yielding much better services in coastal cities. How many low vision people, other than me, will you see walking around Prescott, although an estimated 9000 in Yavapai County?
    At this point, the most valuable service I’ve received is that $35 cane and a few lessons at crossing streets that, of course, lack audible signals or driver warnings. I truly believe that white cane is my ticket to the only freedom I can have. There is no viable public transportation, So I’m often using taxis if rides are not available. And notice that the Community Center, within walking distance of my home, has no sidewalk access.


    In contrast, before the recession, I was formulating plans to move to Tucson where SOAVI offers regular services comparable to Lighthouse in major cities and welcomed my computing expertise as a volunteer. Retirement-rich Prescott is incredibly service-poor.
    I regret that so few other low vision people in the Prescott area can receive comparable training. I also note that there is no computer training I am aware of nor any exposure to assistive technology comparable to the audio reading, book services, and more available to veterans and students. As a technologist, I found my own resources, and I am proposing such information through courses at OLLI at Yavapai College.

  3. How it feels to be a citizen deprived of health insurance “choices”.
    • Not health but rather,
      corporations insurance. They determine the risk pools, not the forces of demographics and society. Some person pushed around the paper to deny me coverage for my pre-existing condition and, at AARP, of any insurance. Managers and policy makers determined that, no matter what else about my health, I would reduce profits in annual exams. I’ve read that about 400,000 health corporation employees spend their working hours paid by premiums to deny insurance to citizens in order to pass profits to shareholders and corporate bosses. This is as evil a form of capitalism as could be imagined with no innovation, public service, or redeeming values, just pure profiteering.

    • Even more insulting, as a “self-pay” I got to fork over for the full rate rather than any reduction negotiated among doctors and insurers. Luckily, I had only year and a half of routine exams for my “pre-existing condition” but lived in fear of a major treatment that could run into $10,000s.

    • I am appalled at state politicians and tax payers who refuse resources to
      our system of social services so starved of trained rehab people that low vision individuals sacrifice safety and independence that probably lead to higher medical costs, e.g. $1000 when I tripped over a decorative rock down town Prescott.

    • I also resent second class status as a citizen who has for nearly 20 years supplemented family members in and out of personal difficulties, but now becoming taxpayers. I was a willing safety net, but there’s no net for me.

    • A visiting friend recently got excited at the national anthem played at the square, but I could find no feeling of national loyalty, only sorrow for myself and the many other disabled people I know who, with great resilience, overcome disability but always end up with less financially and more aggravation and deprivation from lifetime medical services. You own your pre-existing condition, so it goes, but why should the U.S. support a medical industrial complex that profits from exclusion of persons with disabilities.

    • Finally, I know all too many people who remain mired in companies they dislike, submitting to discriminations practices, enslaved due to health insurance.

Recommendations

Abolish the profiteering, paper pushing, intrusive health insurance companies and provide full support for a public option. No country can claim it is “good and great” when its health care system is rotten and wasteful at the core. Why fight terrorism abroad and still facilitate slavery and profiteering from illness and disability in the home system?


Additionally, extend the notion of health support to include the social services, rehab specialists, training centers, and public support that keeps people with disabilities productive and not needing more costly medical services. Just adding 3 more rehab people to the Prescott area would add, what, maybe $300,000 or about one middle-class house or a $1 more taxes. Now, realize that everybody will be disabled eventually and these specialists are even more essential.


Note that the disability I describe is a “social construct” as much as an individual condition. I have rather resiliently responded to my condition with great personal growth while the insurance and social services have constituted far more challenge and distress. I have only faced the full force of this dysfunctional system for about 10 of the 15 years of my progressive disability while many others have a lifetime. I have come out with a sense of service to others exhibited in my blog writing, advocacy in social media, and participation in lifelong learning distance education opportunities at Yavapai College.


Fix the system by abolishing private health insurance, acknowledging that this impoverished dogma of capitalism is far worse than any possible replacement that serves all the people. Apply the funds, after retraining insurance paper-pushers, to building a disability friendly society that, like the curb cut, will improve lives for everybody.

Addendum: So now we know, sorry,, the nation cannot afford health insurers!

Many U.S. citizens have lost our innocence about capitalism watching the fiasco of Wall Street bailouts and, now, the role of the medical-industrial-government complex in our personal lives and 1/6 of the national economy. So, it’s now established baseline that acceptable universal health care can be provided for 3% overhead, i.e. Medicare. And, facts vary, but let’s assume premiums carry 20% overhead, including profits to shareholders, bonuses to executives, salaries to underwriters (i.e. those who deny insurance or claims), adjusters who hassle doctors and their administrators over claims, processors who actually do work comparable to the Medicare 3% overhead. Oh, yeah, also lobbying, lawyering, and the usual industry hobnobbing at expensive places. All this, when in many locations there are near monopolies or few competitors. And more along the lobbying vein are the subsidiary think tanks that produce reports to influence legislators.

Can the U.S. economy actually sustain 20% versus 3% overhead costs? Wouldn’t we be nuts to continue such a costly system? Well, not if it were geared toward innovating and modernizing health care records and studies of comparative treatment effectiveness. But that’s not happening, at least for the benefit of the citizenry. No innovation, inhumanc3e denial of services, isn’t this just pure profiteering?


Here’s a counter-proposal if U.S. citizens cannot give up on capitalism in its most appropriate context, as argued by NYTimes columnist Paul Krugman. Knowing 3% overhead is the baseline, allow 5% of premiums for profit private companies. That’s all, covering administration, executive salaries, and dividends. Sorry, insurance industry investors, and I’m probably one somewhere in my diversified portfolio. Profits have been inflated, costs have not been controlled, it’s time for reparations after the war on those with pre-existing conditions. But won’t the health industry go nuts and up their charges? Well, let the insurers and health care providers go to negotiating like other claims, rather than allow the insurers to have the final call. Now, let’s slice off another 1% of premiums into a fund to improve healthcare delivery, doctors’s lives in underserved districts, the social service gap I’ve described. Isn’t that a better trade-offhann corporate bonuses or deniers’s salaries?

Bottom Line: If the for-profit insurers’ cannot even come close to a current public option, i.e. Medicare, the country cannot afford to subsidize their dogmatic capttalism. For those who cannot abide government-run systems, give a private option capped at a reasonable level of 5% overhead, stripped of denial privileges and forced to innovate and streamline to survive.

Contact

August 19 2009
Susan L. gerhart, Ph.D.
https://asyourworldchanges.wordpress.com
blog “As Your World Changes”, ‘Adjusting to vision loss with class, using technology’

slger123@gmail.com

Grabbing my Identity Cane to Join the Culture of Disability

May 14, 2008

How the white cane marked my transition

I am just coming off 2 months of travel to events in differing capacities as professional reviewer, accessibility spokesperson, disability consumer, and general traveler. After two years of legal blindness, I am still feeling like an immigrant in a new culture. I retain strong memories of my past ways of work and interpersonal interaction, but I am now beginning to understand the culture of disability. This transition has been marked by my adoption of the Identity Cane as a frequent companion as I navigate my hazy world.

Description of the white identity cane

The Identity Cane is a slim white cane intended not for robust walking assistance but rather to let others know its carriers are visually impaired. There are a few issues here.

First, consider robustness of the instrument. Mine, costing about $20, folds nicely and is quite light. It is good for poking at curbs and sidewalk spots that look like holes or ridges. But it is not for tapping or waving, as would be learned in a mobility training regime. One tangle with a fire hydrant or bicycle and this pole will be a pile of sticks. However, compared to other physical gadgets that seem to break for no reason, this fold-up item is holding up well.

How the identity cane signals vision limitations

The Identity Cane is meant to be a signal to passersby, service people, and new acquaintances that you have vision difficulties where they might help you. The other day, at an intersection, another street crosser seeing my cane just stated loudly "ok, time to cross", not knowing whether I could see him or how much help I needed. Airport personnel are alert to the cane to offer assistance to find elevators or check-in counters. A white cane can also gain more polite and helpful responses when you ask a stranger "where is the Saint Michael Hotel?" while standing directly in front of its sign.

However, this little pole is no badge of invincibility. Drivers on cell phones are just as likely to run over you whatever you are carrying, although the cane can be waved to possibly attract attention. Airport T.S.A. check-ins are variable, with some monitors wanting to stuff your cane onto the conveyor or into a box or frisk for objects planted on the blind lady. To my surprise, nobody ever asked when I went through security with my soon-to-expire Drivers License in one hand and a white cane in the other. A cane can help remind flight attendants you might need extra help but it might also enlist an unwanted wheel chair rather than a walking escort, if needed at all.

The identity cane influences my own behavior

For me, the Identity Cane is an important reminder that I am partially sighted. I do not use it on my exercise walks along a regular route, but elsewhere it tells me "slow down, watch out for decorative stones that might send me to the Emergency Room, look for exit doors that might set off sirens, remember I can ask for help, never take a short-cut, generally behave like a person who cannot see everything".

Yes, it was really hard to get used to carrying the cane as an Identity. What if people think I am blind? Well, duh, Susan, remember your priorities – safety is paramount, energy is consumed by covering up, and relationships are hard enough without the ambiguity of a disability.

But it is not really that simple to clarify the cane’s meaning if you are partially sighted. Having covered up my condition for 5 years with an uncomfortable employment situation, I became very good at navigating and acting normal. Except when I tripped or ran into something. Then I looked clumsy. Or when I skipped an event that was hard to handle for transportation or dining reasons,, I appeared unsociable or shirking. This is getting into more aspects of the culture of disability, where adopting the cane is an admission of vocational difference, a more than symbolic transformation of identity that demands organizational change in work or community groups.

The white cane educates public option

Since low vision is a relatively rare occurrence condition the Identity Cane is a strong signal in the noise of everyday life. Never in my career had I seen a blind woman at a professional event, so my cane carrying at recent working gigs has probably been most unusual for other attendees. That is especially good for computing professionals to remind them that low vision is not just for their grandparents but also is part of the working conditions for someone performing the same tasks as them. If only it could also raise their curiosity to learn more about assistive technology, the afflictions of their students, the A.D.A. regulations they wish away, and the prevalence of accessibility issues.

For me, the Identity Cane is a badge of education, not only within my profession but also in the community that suffers from lack of low vision services. Visually impaired people may appear less often in public leading to a circle of ignorance. City fathers think "we do not need to pay for accessible street crossing when nobody blind wants to cross" — but no sane blind person would risk their life at the intersection. This makes the Identity Cane a symbol of activism as well as a protective measure.

The identity cane is a strong force in vision loss

In summary, the cane used only for Identity is a strong force for overcoming vision adjustment resistance, personally, professionally, and for the wider public.