Disability and Elderly Issues




This section discusses the following methods used to review the knowledge base:

  • Analysis of the data
  • Thorough library-directed peer review of the relevant databases and
  •  Review of specialized and other publications related to education and training for students who are blind, especially in training them for STEM-related careers.

Sadly, the data are of poor quality when concerned with blindness and visual impairment. This author suspects that the people performing the 2000 census did an excellent job. The problem was the people at the census did not ask the right questions. The result is individuals who are blind or visually impaired did not get accurately counted.  They were included with another group of individuals with disabilities. As a result, what the word “blind” means is unclear, or, as far as the Census Department is concerned, includes people who have hearing impairment. Issues relating to people who are blind are different from issues relating to people with hearing difficulties. This datum problem makes it difficult to count and allocate resources appropriately. [The forthcoming Discussion section will discuss this issue and issues related to scholarly work in more detail.]

Review of scholarly work

This work is an outgrowth of a study of the literature of peer- review publications. The review was of the ten year period 1996-2006. The subject was science education instruction in grades K-12 for students with disabilities that affect the ability to see, hear, or walk (Solkoff, 2006). The study was conducted under the supervision of Prof. Gregory Kelly, who is also the editor of Science Magazine. Dr. Kelly suggested relying on the expertise of Dr. Justina O. Osa at the superb Paterno-Pattee Libraries at The State University of Pennsylvania. Dr. Osa was extremely helpful in ensuring that the correct search engines were used in the most effective manner and in selecting the names of publications she regarded as “most influential” in the field and she gave, without hesitation. the names of the publications listed below. The author used the following search engines:

  •  Educational resources information center
  • (ERIC)Professional development collection (Education)
  • ProQuest Direct (newspapers, magazines, business
  • Psychology databases and
  •  PubMed (Medicine).
  • Also, singled out for individual search were the following publications:
  • (a) International Journal of Science Education;
  • (b) Research in Science Education;
  • (c) Research in Science & Technical Education;
  • (d) Technical Education; and
  • (e) Science Education.

The results of the search were disappointing. Included in the literature review were all significant publications in the sciences and in education. In the past 10 years these publications have decided not to foster empirical research leading to studies on the effort to teach science to children with disabilities. The major publications do not yet realize the broader significance of the advances made in teaching science to students who are blind. Newsworthy was the event on July 23, 2007 at the National Federation for the Blind’s Baltimore, MD science fair. For the first time, 500 high school students who are blind and who are interested in science got together in one location and met with role model scientists who are also blind. The students at the meeting requested additional assistance in learning chemistry and even astronomy—is this not the subject of articles and studies to further the knowledge base? Dr. James T. Herbert, Professor-in-Charge, Rehabilitation Counseling Program, suggested that this work concentrate on the experience of individuals who are blind. Following this advice has helped to focus on individual problems to provide suggestions for a solution. One likely solution, STEM careers, is a solution of special interest to this study. This study coincides with current interest in the community of individuals who are blind to consider science careers. It also coincides with on-going assistive technology currently under development. Talk, for example, to Cary Supalo, a chemistry graduate student at The Pennsylvania State University who is blind. Supalo is currently in the process of developing chemical probes so that a chemist who is blind can hear on his or her computers the color name resulting from a test. Supalo has developed other probes, which are currently working and available from Supalo National Science Foundation web page.

Using a Supalo probe, one inserts a probe into a computer and a synthetic voice sounds out the answer. See Supolo’s web site: Marvel at what a work of genius and perseverance  this on-going web page represents. In addition to this study’s performance of peer-review articles, much attention has been given to the specialty and related literature and data which provide considerable insight on the situation of individuals who are blind. Also, included in the specialized non-empirical literature is a discussion of STEM literature and data. The next two points worthy of  focus is recognition of the magnificent contribution of Helen Keller to all of us and an appreciation of Mississippi State’s Rehabilitation Facility. Afterward, are subjects worthy of special focus and possible empirical study self-image and role models.

Helen Keller
Helen Keller


The relevance of Helen Keller to our lives

The work of Helen Keller must inspire all of us who work to better the conditions of the blind in our own way. Helen Killer was also deaf. The quality of her autobiography pointed to a mind  unfettered by disabilities. Helen Killer is our role model. A reading of Helen Keller’s The Story of My Life comes as a tremendous surprise—especially in the beautiful way she uses the English language. Listen to the way she mentions her disability for the first time in the book.

She writes: “I lived, up to the time of the illness that deprived me of my sight and hearing. in a tiny house consisting of a large square room and a small one in which the servant slept.”

She has a sense of who she is and what is important to her and how to make that known. Somehow, in the quality of the writing and the gentile but thorough accounts of what it is like to live with disabilities, the reader realizes that he or she is inside Helen Keller’s mind finding out what Keller sees that is important. What is important to Helen Keller is the recognition that people with serious diseases are entitled to rest now and then. Even so she had a seize-the-day (carpe diem) philosophy that lasted all her life. Every day was an important day to smell a rose, to go for a walk, to read poetry, and to think. Keller’s joy about learning and the learning process is the most important point she makes.

Consider the following words of Helen Keller: “Even in the days before my teacher came. I used to feel along the boxwood hedge, and, guided by the sense of smell, would find the first violets and lilies”

Appreciation of Mississippi state rehabilitation & training center

Since its founding in 1981, the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State is a beacon of hope for anyone concerned with the problems of the blind. The Center encompasses a library of readily accessible scholarships, including empirical research reports over the internet.

  1. Dr.Elton Moore, Professor and Director of the Center, is the author or coauthor of hundreds of articles on rehabilitation and blindness. In one article he looks back at the past 100 years, when the Journal of Visual Impairment & Blindness was previously called New Outlook for the Blind.

Dr. Moore writes of previous practice:, “Brief summaries were commonly pushed in the journal that highlighted the activities of individual workshops for people who were blind that were held through the United States, the majority of these courses offered lessons in broom or mop making and chair caning for men and basket weaving and knitting for women. Employment of people who are blind or visually impaired was typically defined in these early issues of the journal in a narrow economic sense as it related to simply earning money.  Little or no attention was devoted to upward mobility or career advancement, finding jobs that were consistent with an individual’s abilities or interest, or other career opportunities.” By writing so prolifically about individuals who are blind and writing in such useful detail about the realities of the situation, Dr. Moore furthers the cause of giving blind individuals access to long-term careers.

Self image

One major issue people who are blind face is self-image. Castellano (2006) writes that a major problem  students face who have been blind most or all of their lives is how they feel about their disability. Callano is helpful when she suggests that feeling sorry for someone who is blind gets in the way of the blind person’s dignity. Here is Costellano’s argument: “We have choices in the way we view blindness/visual impairment. We can view the blind/VI student as helpless—or we can choose a can-do approach and teach the student skills. We can believe that blindness/visual impairment is sad and we can feel sorry for the student, or we can decide it’s okay to be blind/visually impaired. We can blame blindness for any lack of achievement or problem in school or we can search for the real culprit which might be a lack of appropriate materials or the lack of training in a skill.”

The marine biologist Dr.  Geerat J. Vermeij (to be discussed in the Role Model subsection) has been completely blind since early in life. In his autobiography Dr. Vermeij writes that he does not allow the risks involved with being blind get in the way of the even larger risks involved in not living life to the full, “[T]here is nothing about my job that makes it unsuitable for a blind person. Of course, there are inherent risks in the field work. I have been stung by rays, bitten by crabs, and detained by police who mistook my partner and me for operatives trying to overthrow the government of their African country, and I have slipped on rocks, scraped my hand on sharp oysters and pinnacles of coral, and suffered from stomach cramps. There isn’t a field scientist alive or dead who hasn’t had similar experiences. Life without risk is life without challenge; one cannot hope to understand nature without experiencing it firsthand.” A strong advocate of self-determination for the visually impaired is the sociologist C. Edwin Vaughan who writes, “As I have often repeated, the only significant difference between the blind and others is the amount of vision, and with proper education and training this one difference can be reduced to little more than a nuisance.” For infants and early children, the issue of being blind does not affect negatively the future student’s abilities. Of special concern is a person who suddenly becomes blind at 40 or 50 or at an age where blindness comes as a surprise. Then, work on grief at the loss of sight ought to figure prominently in the literature. Loss of one’s eyesight is a terrible loss. The situation with regard to blind pride is most clearly shown in a National Federation of the Blind (NFB) DVD in which the speaker in Episode One boasts kindly of the contributions people who are blind are making to our civilization as a way of denigrating people who have sight. Advocates for certain groups in the hearing-impaired movement suggest the not hearing is better than hearing and those children who have an opportunity to achieve hearing (or a much enhanced sense of it) not perform the operation and the child is better off not hearing and remaining part of a not-hearing community.

The community of people who are blind have not committed themselves to an extreme position. For many students who are blind issues relating to loss of sight are not relevant. These students will probably be blind all their lives and they have created for themselves a new and satisfying way of living. The other issues relating to adults who become blind is not within the purview of this study. Perhaps, Castellano and others whose experiences coying with blindness will be discussed here are correct. Perhaps, feeling sorry for someone who cannot see is inappropriate. Perhaps, the lost skill of sight can be replaced by learning other skills. Perhaps, people who are attracted to helping individuals who are blind are motivated for reasons of empathy which interfere with a can do spirit. Your author has met with, spoken to, and read biographical works of blind men and women who displayed a remarkable sense of drive, ambition, and love of life that cannot be adequately expressed in words. As someone who has a major disability—a mobility disability—the perspective this author brought to this issue is one of gratitude toward people who helped when help was needed. Perhaps the motivation of people who helped was not ideal, but they helped and that is what mattered.

Role models

Simon Kreindler, a Toronto-based child psychiatrist, says that the use of role models is most effective during the period of late adolescence and early youth—from ages 11 to 22. “Here in Canada we have institutionalized role models on a more widespread basis than in the States through regular practices of a role model inviting a student to the work environment. Making use of role models to assist in encouragement of science careers for students who are blind might be quite effective,” Dr. Kreindler says. (S. Kreindler, M.D., personal communication, telephone, August 15. 2007.) The educator Carol Castellano recommends that students who are blind study the lives of two individuals who became successful scientists and who are blind.

Geerat J. Vermeij
Geerat J. Vermeij

One of the role models Castellano cites is  Geerat J. Vermeij, who is permanently blind, received a B.A. degree from Princeton and a PhD. from Yale in biology and geology. Vermeij has published five books and more than 160 learned articles and papers in such periodicals as the American Naturalist, Paleobiology, Transactions of the Royal Society, and Science. His study of marine biology, especially mollusks and the link between marine life to evolutionary forces, has earned him the MacArthur Fellowship. This Fellowship is popularly known as the “genius fellowship,” because of the intellectual strength of its recipients, the size of the award, and the absence of restrictions on people receiving the grants.

The Public Broadcasting System has produced a television documentary on Vermeij’s work. The second role model Castellano cites is Abraham Nemeth, who is Professor Emeritus of Mathematics at the University of Detroit Mercy in Detroit, Michigan. Nemeth, G., J., who was born blind, received his master’s degree in psychology from Columbia University and his PHD in mathematics from Wayne State University.

Castellano writes, “Dr. Nemeth says that he was discouraged from making mathematics his undergraduate major by vocational counselors because of his blindness and the lack of braille materials. He acquiesced and switched to psychology instead. But take a look at the courses he chose for his electives at college—analytic geometry, differential and integral calculus, modern geometry, statistics—any math course he could get his hands on.” When the Braille code proved inadequate for the requirements of academic mathematics, Nemeth developed what is now regarded as the authoritative Nemeth Braille Code for Mathematics and Scientific Notation. He also developed MathSpeak, a protocol for reading mathematical text. Nemeth’s on-going work in computer studies continues this professor’s efforts to improve tools for communicating mathematics. Castellano believes that Vermeij and Nemeth are worthy of attention not only because of their accomplishments. Castellano points out that counselors discouraged both Vermeij and Nemeth from pursuing their scientific studies. She believes that studying role models can generate in students who have visual disabilities encouragement to pursue careers requiring lengthy periods of education and intellectual challenges. Consider, for example, the Commonwealth of Pennsylvania’s current Bureau of Blindness and Visual Services web page which lists a wide variety of services. One program, for example, “assists persons operate food service businesses in commercial, industrial or governmental locations. Food services can range from a vending machine route to the management of a large cafeteria.” While the web page does, indeed, offer “vocational and college training,” careers involving challenging intellectual skills receive little attention. Compare the web page with the way Vermeij describes one aspect of his career: “The process of discovering new facts, of adding to knowledge, of building a body of theory based on one’s own work and the accumulated knowledge of others, is immensely rewarding. I learn every day, and I enjoy communicating what I have learned and what I think I know to others. For me, the preferred medium is the written word. I also enjoy lecturing or leading discussions in my classes.



Disability and Elderly Issues



The problem

Why are job opportunities for individuals who are blind or visually impaired so bleak? Consider the figures on employment, college education, and poverty.

Fewer than half of individuals who are blind and visually impaired have jobs (U.S. Census Bureau, 2005 Disability characteristics). [For simplicity, unless distinctions become necessary; henceforth, the word blind will be used to include all individuals who are visually impaired).]

For individuals who are blind:

  • (a) the official employment rate is 47.2 percent (U.S. Census Bureau, 2005 Disability characteristics). This figure applies to the 16-to-64 age group—a standardized designation the U.S. Department of Census uses to define men and women likely to seek employment; (U.S. Census Bureau, 2005 Disability characteristics);
  • (b) 72.4% have no bachelor’s degree and are not enrolled in college (U.S. Census Bureau, 2005 Disability characteristics); and
  • (c) the poverty rate is 18.7 % (U.S. Census Bureau, 2005 Disability characteristics).

This paper discusses the problem of why individuals who are blind have such poor employment, educational, and poverty rates. This paper also clarifies the need for scholarly research to help fix the problem.

This problem is important because

  • (a) there are 3.4 million Americans who are blind (U.S. Census Bureau, 2000 Disability population) and as the general population ages the demand for services, including vocational services to help clients lead an independent life is increasing,
  • (b) there are about 100,000 school age children who are blind (Castellano, 2005) and [thanks to a statistical system that makes it difficult to obtain reliable specific data on the blind]  2.2 million undergraduates who have the entire range of disabilities (U.S. Department of Education, 2004). If current history relies upon the recent past as a predictor, blind students may not obtain the educational opportunities they require for rewarding careers,
  • (c) there are 1,700 returning Iraqi War veterans with brain injuries that include blindness, whose rehabilitation is only beginning (“Struggling back from war’s once-deadly wounds,” 2006), and (d) the Bureau of Labor Statistics and the National Science Foundation predict that the U.S. economy will suffer in future years from a shortage of skilled employees working in jobs where eyesight is generally not required (STEM occupations, 2007).

Because students who are blind face a multiplicity of issues, a successful outcome depends upon focusing on how to achieve measurable improvement. A concentration on primarily vocational issues, none-the-less, requires an understanding of the requirements for supporting, educating, and training individuals who are blind. At issue is preparation for long-term, secure careers requiring an education with a bachelor’s degree as a minimal requirement. A major goal is to enhance the self-esteem of individuals who pursue these careers.

Success, which will not come quickly, involves concentrating on a younger and less-numerous portion of the population who are blind. These are individuals who have years to devote to careers that require several years of obtaining prerequisites prior to their college training.

Individuals who are newly-blind and represent an aging workforce have talent, education, and experience and could benefit from a return to employment. They require new skills to solve problems caused by their loss of sight. It is hoped that as a consequence of a youth-based focus, older individuals who are blind will benefit from the consequences of a step-by-step analysis of the career preparation process. They would also benefit from likely advances in assistive technology and a more clearly-defined set of services as providers work to specialize on meeting special needs.

A primary focus on the vocational requirements of the young is the research strategy of this paper because a large portion of the literature is geared toward the young, because it is easier to martial the available literature to discuss their problems and the background behind those problems, to examine likely solutions, and to identify steps the scholarly community can take the provide the empirical research likely to produce success.

Currently, limitations of peer review publication highlight the need for more academic attention on subjects related to students who are blind including solid clinical accounts of empirical studies in a field of disability research.

Fortunately, the knowledge base concerning individuals with blindness is excellent. This is especially the case in the category of professionally-based literature on specific subjects, such as orientation and how to read Braille, and including a wide range of broader issues.  Counselors would feel more comfortable if prestigious science and education journals paid more attention to the problems of individuals who have disabilities.

This professional knowledge base demonstrates a fundamental understanding of the special requirements of people who are blind based on an extensive, frequently excellent, multi-genre knowledge base—but a supplementary knowledge base that does not benefit from the rigor of empirical research. This supplementary knowledge base consists of such categories as

  • (a) orientation and method (O & M);
  • (b) issues of self-image and how they apply to clients, counselors, and family, friends, and educators providing support;
  • (c) multiplicity of providers, including the Bureau of Blindness and Visual Services (whose name may change from state-to-state), visual-impairment, special education, and guidance counselors in the school systems, the Veterans Administration and private agencies providing services which can be overlapping;
  • (d) use of role models to assist in encouragement of new careers;
  • (e) assistive technology, which can provide help, for example, for students who are blind to perform chemical experiments;
  • (f) the problem of declining Braille literacy rates, especially considering that 85% of individuals who are employed are blind are Braille literate (Castellano, 2005);
  • (g) limitations on the quality of data and statistical information on people who are blind to improve the quality of policy decisions and resource allocations (U.S. Census Bureau, 2000 subject definitions);
  • (h) a changing definition of disability which focuses on achievement rather than impairment (Mitre, 2006); and
  • (i) discussion of the demographics of people who are blind. [Separate study would be useful for older individuals who form a growing percentage of the visual impairment population. Of the 3.4 million Americans who are visually impaired, 1.3 million are over the age of 65. These individuals would benefit from employment or other assistance in helping them make use of their talents.]

Suggesting steps for solving the problem

A major problem of low employment, low educational attainment, and poverty is solved when individuals who are blind are educated, trained, and receive assistance in securing well-paying jobs. A Bureau of Labor Statistics (BLS) report on the “fastest growing occupations,” between 2004-2014, showed 30 jobs, growing by at least 30 percent (BLS, 2005).

The overwhelming majority of the jobs require at least a bachelor’s degree. Many of the jobs are science-related, such as network system and data communications analysts, which are projected to grow by 55 %.

According to a National Science Foundation report entitled, An Emerging and Critical Problem of the Science and Engineering Labor Force (2004), jobs in science and engineering are growing by almost 5 % a year compared to 1 % for the labor force at large. The report noted, “Quality education in math and science is everyone’s challenge and responsibility. The nation’s economic welfare and security are at stake.”

The National Science Teacher’s Association and the American Chemical Society jointly chair The Science, Technology, Engineering, and Mathematics (STEM) Education Coalition to advocate on behalf of STEM-related issues (STEM, 2007).

A recent search of job opportunities at Yahoo’s (2007) found the following available jobs at disclosed salaries for each of the STEM categories:

  1. Science: Research scientist, pay $75,000 to $100,000, Azusa, CA, Master’s degree and experience required. Job description for the CyberCoders Company reads, “We are looking for a Research Scientist in the Life Sciences and Cell Therapy divisions who has experience working with plastics, polymer, film….” (Yahoo 2007)
  2. Technology: Java developer, pay $59,000 to $76,000, Philadelphia, PA, Bachelor’s degree and a variety of software including JAVA2007 required. The recruiting company e-brilliance notes, “Developers needed to work for software company which creates system for the insurance and financial services industry.” [Note: For an individual who is blind, the software sets (which require work on web pages) may or may not work, depending on cooperation of colleagues and whether assistive technology can be in place to make this particular job work. The requirement for software engineers, using Oracle, for example, and the state of the market might dictate another software developer choice. Vocational counselors can be especially helpful here.] (Yahoo 2007)
  3. Engineering: Applications Engineer I, pay $43,000 to $55,000, Chrystal Lake, IL, Bachelor of Science degree required and experience. Epson Electronics America notes that the applicant “Provides technical interface for LCD’s [liquid crystal displays] and associated products with field sales and customer to evaluate generate sales leads and design-in EEA [company abbreviation] products for design.” (Yahoo 2007)
  4. Math: Math Teacher, pay $43,500 to $68,887, Dallas, TX, Bachelor of Science degree required, bonus provided because of math teacher shortage, certification results in higher salary. (Yahoo 2007)

The point of the above exercise is that individuals who are blind currently earn a Social Security Insurance (SSI) minimum of $623 per month ($934 for a couple), plus, as a Social Security web site notes, recipients “may be able to get Medicaid, food stamps, and some other social services.” (Social Security, 2007)

The jobs cited here and jobs like them could lift individuals who are blind out of poverty and dramatically change the quality of their lives forever. There are no guarantees that hard work, a college education, experience in the field, knowledge of software, and advanced degrees are likely to result in secure jobs. Nor is there a guarantee that STEM careers will continue to live up to their promise.

Arnette (2006) reported that the private sector unemployment rate for American Chemical Association members was 3.9 % and the Rand Corporation issued an equivocal report raising questions about whether future demand for scientists and engineers will continue to grow.

The U.S. scientific and technical workforce improving data for decisionmaking, 2004). Individuals who are sighted prepare for the vicissitudes of the marketplace and understand that if they have the skills to follow a career, the opportunity may exist for them to grow and prosper. Individuals who are blind should have the same chance to prepare and to develop their talent in an environment that evaluates talent equally with the talent of sighted individuals.

Credible organizations such as the National Science Foundation and the U.S. Department of Labor’s Bureau of Labor Statistics believe in the promise of STEM careers. Other career paths may have less clear and remunerative outcomes. For the individual who is blind, STEM careers offer a reasonable route to choose for escaping a life of low employment, low educational attainment, and poverty.

The body of this work suggests empirical studies the scholarly community conduct to analyze the issues involved in STEM careers so students who are blind can benefit from quality research rigorously conducted.


— Just call me Joel.

Copyright 2016 by Joel Solkoff. All rights reserved.

Navigate to Abstract:

Celebration of the Use of Virtual Reality to Improve Housing for the Elderly and Disabled

University Park, PA.  On Tuesday, May 3, 2011 at 10a.m. Penn State’s Department of Architectural Engineering and its Smart Spaces Center for Adaptive Aging in Community celebrated progress made in a coordinated effort to reduce the cost of housing for Pennsylvania’s elderly and disabled residents today and in the future.

The celebration took place at the virtual reality Immersive Construction (ICon) Laboratory. The celebration:

  1. Demonstrated the use of full-scale 3-D virtual models on large display screens for evaluating cost-effective designs to allow for aging in place. The animated model, based on the Blueroof  Technologies housing initiative in McKeesport, PA, is the work of graduate student Sonali Kumar. The virtual reality approach allows for an avatar to enter the wheel-chair accessible cottage and evaluate tasks such as making coffee in a kitchen to appropriately design for residents who desire housing where they can grow old without having to move to a costly institution.
  2. Allowed participants to meet the leaders of Blueroof Technologies in McKeesport, PA using a live video connection.  Blueroof is using prefabricated housing with embedded sensors for improving user interaction with their residence.  The environment can inform a resident when to take medication, monitor for falls (then, call 911 if the resident slips in the shower and does not get up), and provide televised links to medical facilities reducing routine medical care cost.
  3. Show the work of the Computer Integrated Construction Research Program, directed by John Messner, associate professor of architectural engineering,  focusing on the application of advanced computer modeling to improve the design, construction, and operation processes for buildings.
  4. Present the work of architectural engineering students  trained in using 3-D experienced-based design.  Virtual modeling is rapidly becoming an important tool for the construction industry, providing the ability to make changes in health care and other facilities before construction actually takes place.
  5. Provide an opportunity for residents of Addison Court, a State College independent living facility for elderly and disabled individuals, to see what the future will bring and serve as critics who can use their life experiences to aid in the design process.
  6. Highlight the work of  Penn State’s Smart Spaces Center, directed by Richard Behr, who leads an interdisciplinary effort to address the needs of the rapidly increasing number of baby boomer Americans who wish to age successfully in their own homes.
  7. Recognize contributions made by the Raymond A. Bowers Program for Excellence in Design and Construction of the Built Environment, the Smart Spaces Center, the Partnership for Achieving Construction Excellence, and other private and public organizations working with Penn State to improve life for Pennsylvania’s elderly and disabled.
  8. Using a scooter from Amigo Mobility, Blueroof will begin to experiment on how to help residents with mobility disabilities make better use of the technology around them. The Amigo scooter will have an iPad 2 and other remote devices so residents can turn the lights on and off and perform other functions without leaving the chair.
After Florida, Pennsylvania has the highest per capita of elderly of any state in the union. Not all news about health care costs is bad news. Come learn about some of the good news.
Computer Integrated Construction Research Program:
Immersive Construction Lab (ICon Lab):
Smart Spaces Center:
Immersive Construction Lab
306 Engineering Unit C
University Park, PA 16802

My first scooter: Originally published as a Valentine to the Durable Medical Equipment Industry

 [The following was originally published in the February, 2011 edition of HME News as a Valentine to the Durable Medical Equipment industry. The love continues.]

I was so angry, wild with fatigue, that I lifted my ugly drug store cane intending to destroy my employer’s computer printer. This was in California’s Silicon Valley. The printer was networked to nine computers. After a late night writing a portion of a manual on silicon wafer inspection, I commanded the computer to print.

After I weaved my way to the printer (seemingly miles away from the computer), there was no document. Five trips back and forth (nothing each time) and my level of frustration caught up to my level of exhaustion. My control was at the breaking point.

Six months previously, I had lost my ability to walk. The concepts I was writing about were hard to understand even when I had been healthy and well-rested. My ability to physically support my body was shaky. I fell several times a day. My right arm had been badly dislocated in a fall. What I needed was a fore-arm crutch with properly fitted prosthetics or a scooter. My doctors focused on understanding how I lost the ability to walk and little on how I could live without walking.

Mortgage payments were due. Home was North Carolina where a wife and two elementary-school-aged children waited. The local economy determined technical writers were not currently needed. At the same time (1996), California needed my skills as of yesterday and I was promptly hired for KLA-Tencor, a company paying large sums to do fascinating work.

I did not break the printer. I drove to my apartment, slept and thumbed the yellow pages praying for relief. I did not know what I was looking for. After a while, I left a voice mail with a dealer in wheelchairs and scooters (not knowing then what a scooter was). That is how I purchased my first mobility device.

Scott returned my call and listened to my situation. We talked price. He recommended a used front-wheel drive scooter. I was skeptical. “Let me show you how it works,” he said, crossed town quickly and lifted a scooter from his truck. I sat down and drove circles around the empty street. My able-bodied college friend David Phillips, in whose house I had an apartment, was fascinated. Keeping David from driving my scooter was hard.

I had discovered three important things about mobility devices:

    • They are fun.
    • They take away the drudgery of not being able to walk.
    • They remove the image that I am someone to be pitied.

I arrived at KLA-Tencor, having:

    • Given Scott a down payment (the beginning of many, mostly personal, expenditures, on equipment, including rear-wheel  drive scooters, power chairs, wheelchair lifts and ramps)
    • Taken the scooter apart myself and shakily inserted the parts into the trunk
    • Slid sidewise hugging the Pontiac’s body
    • Reversed the process

My colleagues applauded. I had solved a physical problem with a technical solution and in the Silicon Valley that was worthy of commendation.

As I look back on the past 14 years, especially worthy of commendation are you, the suppliers of DMEPOS. My time with you here is almost up. Traditionally a column is about 750 words. I have used most of them. A 750-word column can express effectively only one major idea. That idea is that you, the medical suppliers, and people like me, your customers, are a family.

We are a family surviving in a world where David Stockman, Ronald Reagan’s former budget director, said in November on ABC News that the United States can no longer afford to provide its disabled citizens with “scooters.” As competitive bidding illustrates, clearly a bipartisan effort is underway to make it difficult for the disabled to receive mobility and other DMEPOS devices and for you, our local medical suppliers, to get paid for them or even to stay in business.

The pain is especially felt by indigent consumers and small suppliers. In this month where every day is Valentine’s Day, it is helpful to remember the words of Benjamin Franklin (an amorous man if ever there was one) on the signing of the Declaration of Independence: “We must all hang together or assuredly we shall all hang separately.”

–Joel Solkoff is a monthly columnist on disability and elderly related issues for Voices in State College, Pa. He is the author of three books, including The Politics of Food and Learning to Live Again: My Triumph Over Cancer. He served in the Carter Administration as Special Assistant to the Under Secretary of Labor. He has a bipartisan loathing of anyone trying to keep assistive technology from individuals with disabilities—a loathing he is trying to turn into corrective love.

Exclusive Written Interview of Rep. Jim Langevin (D-RI)

Exclusive Written Interview of Rep. Jim Langevin (D-RI) by Joel Solkoff, Voices of Central Pennsylvania
1. Why do you oppose the Obama Administration’s efforts to create competitive bidding for medical suppliers of durable medical equipment, such as medical oxygen, power chairs, scooters, wheelchairs, and other mobility devices?

The competitive bidding program was enacted as part of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA) in an effort to improve quality of service and eliminate excess costs in Medicare. While I support these overall goals, flaws within the bidding process sparked early concerns within the program.

Competitive bidding was implemented in July 2008. However, Congress delayed the program two weeks after it began, recognizing the new system was not generating the savings and competition the law had intended. Further, the program was acknowledged to be a potential threat to access and quality of services, vulnerable to corruption, and resulting in fewer suppliers capable of meeting the unique needs of patients.

During the moratorium, the Centers for Medicare and Medicaid Services pursued other avenues that achieve higher quality care and succeeded in cutting costs, yielding savings of 16.5 percent. These alternatives underscore my belief that the original program is ineffective and unnecessary to keep as written law. For this reason, I cosponsored H.R. 3790, which would repeal the Competitive Bidding Program.

2. What are your objections to the attempt to repeal the first month purchase option for users of mobility devices?

Currently the Medicare program allows beneficiaries a choice as to whether they want to purchase the power wheelchair that is right for their size, disability, functional level and home situation, or if they want to rent it. Over 95 percent of beneficiaries choose the first month purchase option because their disability often involves a chronic, long-term condition and they require use of a power wheelchair to remain active and independent in their homes and communities.

The Affordable Care Act repeals the first month purchase option and requires a mandatory 13-month rental, regardless of the acuity of the condition or long-term need of the patient. Unfortunately, many power wheelchair providers do not have the capital or lines of credit in the current economy to bear the burden of paying the up-front costs to procure the appropriate wheelchairs from the manufacturers. Without a one-year delay, this policy could create significant access and quality-of-care issues as providers of this equipment struggle to make the significant changes to their business model to adapt to a new payment model, which has the costs front-loaded with reimbursements from Medicare spread over 13 months. They may also simply go out of business.

A one-year delay of this provision will allow providers of power wheelchairs more time to implement this significant policy change.

3. Why do you think President Obama waited so long to appoint an administrator of Medicare and Medicaid? (I would think a Medicare Administrator could have given the President valuable information and advice during the health care reform process.)

While I cannot speak for the President, I believe that vetting and selecting high-caliber individuals to lead departments and agencies can be a long and challenging process, particularly those that require Senate confirmation. As health reform was considered in Congress, counsel was sought from numerous stakeholders at all levels and throughout all steps of the process. Now that the law has been enacted, the Administrator of the Centers for Medicare and Medicaid Services (CMS) is one of many Administration officials tasked with its implementation, which is equally, if not more important to the success of health reform.

4. What affect will Donald Berwick’s recess appointment, with its limited duration, have on the future of Medicare and Medicaid, especially given the strong Republican and Tea-party desire to cut Medicare even more.

Donald Berwick is a highly respected leader in the field of health policy. His knowledge and experience make him uniquely qualified to head CMS, particularly as we begin to institute payment and delivery reforms to maximize quality and efficiency in Medicare and Medicaid. While a Senate confirmation would have been preferable, some senators intended to make Donald Berwick’s confirmation process a referendum on health reform, placing ideology over his qualifications as a potential administrator. Republicans have long stated their intentions to “repeal and replace” the health reform law. We cannot dismiss the probability that they will use every means at their disposal to accomplish this, including the use of controversial amendments, defunding the program through the appropriations process, and blocking future nominees for positions in the Administration.

5. What are your views on the half trillion dollar cuts in Medicare as a way of helping to pay for the health care reform bill?

Health care costs in the United States are rising at an alarming rate. Yet despite the fact that we spend more per capita on health care than any other industrialized country, we produce disappointing outcomes by a number of important health measures. Furthermore, the U.S. remains the only developed nation that does not guarantee health coverage as a right to its citizens.

Health reform will expand coverage to 32 million Americans, promote a strong health care workforce, reduce the deficit by $143 billion over 10 years and protect Medicare for our seniors by extending the trust fund by a decade. These reforms are funded in part through Medicare savings, not benefit cuts.

Reducing health care costs and expanding insurance coverage does not mean we have to raid Medicare. On the contrary, we can and must use the money already in the system more efficiently to ensure a sustainable health care model.

6. As a Democrat who worked for President Obama’s election (and as a paraplegic), I have been disappointed by the President’s insensitivity to issues relating to disability, especially as they relate to the on-going difficulties in obtaining needed assistive technology. What are your views on the subject?

On July 26, 2010, we celebrated the 20th anniversary of the Americans with Disabilities Act (ADA). This was an opportunity to both celebrate our accomplishments, and reflect on the continuing challenges.

Individuals with disabilities remain one of our nation’s greatest untapped resources, and they continue to face challenges in accessing employment, transportation, housing and even health care. This will only continue as we see increasing numbers of veterans returning with Traumatic Brain Injury, Post Traumatic Stress Disorders and other disabling conditions.

It is more important than ever that we educate businesses and connect them with proper resources to create more employment opportunities in our communities. We must collaborate with local and state governments to ensure that transportation is available and accessible to everyone so they can get to their job, or the doctor, or the grocery store. We need to provide more resources for our teachers so that every child can receive a proper education, which is the stepping stone to a better future.

We must also continue the development of assistive technologies and make sure that computers, PDAs and phones are fully accessible for the vision and hearing impaired. To that end, on the 20th anniversary of the ADA, the House of Representatives passed the Twenty-first Century Communications and Video Accessibility Act, which would require that certain technologies be compatible with devices used by individuals with disabilities, and attempts to increase access to technology through various funding and regulatory requirements. This was signed into law by President Obama on October 8th.

7. Here in State College, PA, I am a constituent of Rep. Glenn Thompson, a Republican with whom you have been working on issues affecting local suppliers of medical equipment. Would you describe what your working relationship with Rep. Thompson is like?

Disabilities don’t discriminate on the basis of party affiliation. I have a long record of working in a bipartisan fashion to enact policies that increase the quality of life for all individuals with disabilities. My relationship with Representative Thompson is no exception.

8. What are your views on the future of productive working relationships with Republicans on health care-, Medicare-, and disability-related issues over the next two years?

While the climate in Washington has been particularly partisan during the elections, it is my greatest hope that we will not let the issues that divide us keep us from the work we were elected to do. Nothing would be more detrimental to our economic, fiscal and social progress than the continuation of partisan rhetoric and the lack of courage to make the tough choices that will ultimately lead us into a more prosperous future.

9. Do you think a Republican-dominated Congress will be effective in preventing full implementation of the health care reform bill?

Passage of the health reform bill wasn’t the end; it was the beginning of a new chapter for health care in America. This law will be judged by the court of public opinion, just as it will be challenged in the courts and in Congress. Some changes will have to be made, and the policy will evolve as our society does. At the end of the day, I believe the reforms will prove popular and successful.

10. Donald Stockman, budget director for the late President Reagan, says the country is out of money, must cut back on everything, and said on ABC’s This Week with Christiane Amanpour that scooter manufacturers should cut back on production. Is the country out of money? Can we afford to provide our disabled population with the assistive technology we need to be productive? Can our economy afford not to develop the talent of people with disabilities?

Americans are innovative and resilient. Although we will have to make tough budgetary decisions to put our country on a fiscally sustainable path, we still have the resources to invest in key areas that will plant the seeds of economic and social growth. We can make transportation and technology even more accessible and available. We can provide more resources to teachers and students to achieve a better education. We can focus on income and asset development so families have the means to become productive members of their communities. If we act with courage and commitment, then we will provide the means for every individual to realize their true potential.

Thank you.

Joel Solkoff, November 19, 2010, Voices of Central Pennsylvania

[Please note: As a columnist, I have the liberty of injecting personal notes in my writing, such as the fact that I am a Democrat.]


From Where I Sit

“…Dr. [Margaret] Pfanstiehl…said her goal was to engage the sight-deprived to‘live a 20/20 existence without 20/20 vision.’”

                            –from The Washington Post.

Dr. Pfanstiehl, mourned last month in a Maryland ceremony, was blind and promoted audio description technology to the point where a blind patron can hear audio description of dance.

From where I sit on my $5,000 power chair, two issues come to mind immediately. First, President Obama, the man I supported to be president, plans to reduce the Medicare budget by nearly half a trillion dollars. These cuts, intended to help pay for health care reform, have come on top of procedures that hurt me and others who are elderly or disabled. The argument is that current and future cuts will reduce “fraud
and abuse.” Attorney General Eric H. Holder, Jr.’s fraud and abuse prosecutions are notable for their relative insignificance.

The second issue that comes to mind is when elderly and disabled voters are organized,
they constitute an effective voting bloc. As I write this column in Addison Court in State College, I note that Addison Court has about 90 residents who are 55 or older or who have disabilities or impairments.

Most of us are registered and vote even in low-turnout elections. Addison Court now has a tradition of iinviting candidates to inform our residents about the issues. To date, residents (eating
Elaine Mede-Wilgusr donated food from Webster’s Café) have heard R e p r e s e n t a t i v e
Glenn (GW) Thompson, his challenger Mark C. McCracken (currently a Clearfield County commissioner),
Assemblyman Scott Conklin, State College Mayor Elizabeth Goreham, and four State
College Borough Council candidates representing both major parties.

When George Bush was president, he attacked Medicare, creating barriers that
made it more difficult for eligible citizens to obtain medical oxygen for homecare,
wheelchairs, power chairs and scooters.

To take me as an example, in March 2008 a power chair was prescribed for me after (in-patient
hospitalization at Health South). I received a thorough evaluation from physical and
occupational therapy. My physician, Dr Colin McCaul, a specialist in rehabilitation,
prescribed the chair because he said it would be useful for me to have more support
for my right arm, helping to avoid surgery.

It would also be useful teaching my left arm how to perform functions previously
done by my right. The chair’s controls are on my left causing much trouble
before I finally learned how to drive lefthanded.

Medicare required that I go through an hour-and-a-half test with a rehabilitation
specialist. After passing the test, I saw Dr. McCaul in the hallway. The rehabilitation specialist
emphasized the importance of the doctor scheduling a one-on-one appointment devoted strictly to why I need a power chair and to be followed by a paper prescription with the magic words on top “after a one-on-one appointment.”
Since I had seen Dr. McCaul immediately before the test, he said it wasn’t necessary
to meet again. He would take care of it.  Medicare, which has been consistently negligent in explaining the rules to physicians rejected the prescription and would not pay. The prescription was not written in keeping with Medicare regulations. [How I obtained payment from an agency other than Medicare
 is a story for another time.]

When Obama became president I thought he would reverse those policies. He has
made things worse. Especially distressing is that while Obama has been busy with health
care reform in which Medicare was a significant factor, he had not named a director of
Medicare, the largest health insurance company in the United States. Assistive technology
(which gets me from bed to the bathroom reliably) generally helps the disabled
avoid assistive living (which costs Medicare more than $40,000 extra per person
per year than independent living. Also, independent living
allows a greater sense of independence and helping to improve morale.

I said in my last column that I would discuss John Wayne’s comment that after
cancer surgery he did not feel sorry forhimself, despite the temptation. Wayne
proved it by getting back to work, filming a movie only two weeks after surgery.
For those of us who are disabled, not feeling sorry means having the equipment to
get a job, equipment suc as that listed above.

Assistive technology for the blind especially have resulted in
very exciting developments Disgracefully, technology that is very
useful to help individuals who are blind gain indepence
is not paid by Medicare. We also need technology for those who cannot
hear—only some of which is paid for, including controversial cochlear implants.

The most effective message to the Democratic Party is the creation of a bloc
within the party that will vote strictly on disability and aged concerns—a bloc which
will flirt with the Republicans if it does any good. [It should go without saying that this
bloc would include disabled veterans, but all too often veterans are neglected even
when intentions are best.]

—Joel Solkoff, author of “The Politics of
Food.” Contact him at [email protected]

Kvetzing in Centre County, December 2009 Version

Preparing for the next column–a columnist kvetches 1.
Submitted by jsolkoff on Sat, 2009-12-26

Dear Reader

I write a column for Voices which appears in the Community and Lifestyles section. The column “From Where I Sit” is about the disabled and elderly. [Please note that according to the Publication Manual of the American Psychological Association (frequently referred to by academics reverently as “the APA style manual”) terms such as “the disabled and elderly” and “the blind” are incorrect; if you want to be published in an academic journal that uses the APA manual, your article will be rejected because, for example, “the blind” assumes that the individual defines himself as blind as opposed to using the politically required phrase “individual who is blind” or better yet “individual who happens to be blind” so that one does not identify individuals by their disability; this is a distinction that does violence to the English language, a language for which I have a lot of loyalty; but a discussion of the language of the disability community must await another time and requires some care).]

For the current issue of Voices (now available at Webster’s and the Corner Room and so on), I describe a telephone interview with John Wayne (conducted before he died) in which he describes his cancer experience. [Expressions such as “cancer experience” should be forbidden by law.]. He counseled people to follow his example. Two weeks after surgery, he was back on the set making a movie and telling people not be weak and feel sorry for themselves.

My original plan was to segue to the next [February] column on tools people who cannot see, walk, or hear require in order to work; dividing the column into three sequential columns and making the next one assistive technology for the blind.

A genius in Boston named Raymond Kurzweil
introduced in June 2005 the “Kurzweil National Federation of the Blind Reader”, which Wikipedia describes as “a pocket-sized device consisting of a digital camera and computer unit. Like the Kurzweil Reading Machine of almost 30 years before, the K-NFB reader is designed to aid blind people by reading text aloud.”

The K-NFB reader gives a blind person at the grocery store the ability to pick up a box of cereal, click the scanner, the device reads the ingredients out loud [available in 13 languages, a concept I find outrageous; imagine hearing words “modified corn starch” in Portuguese; I would find it hard to leave the grocery store, justifying my behavior as saving money on Berlitz—and the Romanian word for avocado is…].

I am eager to describe in detail the voice simulation and generation technology that made it possible for my friend Suzanne Erb, chair of the Philadelphia Mayor’s task force on disabilities, to help me communicate helpful information to the Centre County Obama campaign headquarters, housed in the former Verizon offices across the street from Schlow Library, a headquarters where I convinced the staff to cause new concrete to be poured for the disability entrance so I could take my power chair from my apartment to headquarters.

Erb, who is blind, is also an expert on voting, especially voting machines, contributing regularly to a complicated, detail-filled blog on the subject. Suzanne explained to me the machines the Centre County Board of elections uses and the problems associated with the expensive disability machines (not designed by people with disabilities). [People with disabilities who must use equipment must use equipment without having input in its design.]

President Obama—the candidate for whom I voted in the primary and general election and worked to elect)–is in the process of taking away from those of us with disabilities access to the kind of assistive technology that we used to help get him elected.

Yesterday, I received an email from the President (the same email sent to all Obama supporters on his extensive e-mail list) expressing pleasure at the passage of the health care reform bill by the Senate. Now the House and Senate bills need to be reconciled. I mention this with a sense of urgency because my column must meet a deadline of January 15.

My column is limited to 800 words [fewer words than in this blog posting] which limits me to the expression of only one idea and its exposition. So the question nags: Which new to you idea do I want to write about for the FEBRUARY issue? As a columnist I am obliged to see in the future. Yes, I know that the New Year’s resolutions you have not yet made you WILL break before February.

A predictor of Congressional events told me that reconciliation will take about 3 weeks. But if it takes 6 weeks, then maybe it is time for me to address the effect on Medicare cuts—which the Administration has inserted as an essential element to health care reform—on the ability of low income people with disabilities to obtain power chairs so, for example, I can go from my bed to the kitchen and make my own breakfast or to Webster’s to have Seth make me breakfast. Or, as the cuts continue, I fear being forced by my disability to go to an assisted living place instead, where the cost to Medicare would be $60,000 a year when the cost of my rent is less than $20,000 a year. If I am forced to go to assistive living it will rob me of my ability to take care of myself and it would bum me out considerably.

I will keep you up to date I my quest for the right 800 words for the right time.