Two die in a Wilkes-Barre, PA fire. The building is disturbingly similar to the low income high rise where I live with 89 other residents in Downtown State College.
http://thetimes-tribune.com/news/two-dead-in-wilkes-barre-high-rise-fire-1.2276020
It is 2:20 AM. I awoke Tuesday morning sick with a cold or the flu or somatic manifestations of despair–certainly not confined to the tax bill, but a sense of hopelessness that after Elizabeth MacDonough, Parliamentarian of the Senate, raised what is referred to colloquially as “the Byrd bath” before Christmas President Trump will sign a soak the poor bill with devastating economic consequences.
++++
Deror avi, Detail of the Knesset Menorah, Jerusalem: Hillel the Elder teaching a man the meaning of the whole Torah while he stands on one foot
++++
All day, sweaty and exhausted, I have been reluctant or unable to get out of bed–in and out of restless sleeping, hoping for a respite where I might set aside an hour to put my mind in order following the considerable distractions of the week. Seeking for focus now that I am hopeful that at this unlikely time this may be the appropriate hour, I ritualistically clean my glasses.
++++
Ideally, this would be an excellent time to say my prayers or meditate making use of a mantra helpful for launching the wiping clean of temporal thoughts. The best prayer is already on my lips. In Hebrew. Designed to be said first thing in the morning but one I say periodically over the course of the day.
“I offer thanks to You, living and eternal King, for You have mercifully restored my soul within me; Your faithfulness is great.”
++++
The appropriate mantra is the first of three rhetorical questions.
אם אין אני לי, מי לי
“[Rabbi Hillel] is popularly known as the author of two sayings: (1) If I am not for myself who is for me? And being for my own self, what am ‘I’? And if not now, when?’ and (2) the expression of the ethic of reciprocity, or ‘Golden Rule’: ‘That which is hateful to you, do not do to your fellow. That is the whole Torah; the rest is the explanation; go and learn.'”
Prayer and meditation are denied me. Instead, a jumble of distractions cause restlessness. If I begin describing one of the distractions, I may linger too long and fail to provide an understanding of the sense of being overwhelmed. Here are six concerns (not all, but an arbitrary listing of serious issues that readily come to mind competing and too often interfering with the focus required for resolution).
Here at Addison Court, the apartment complex where I live, the danger of fire and I am convinced more serious than fire itself the danger of panic when fire alarms go off in this partially defend in place building where a substantial number of residents are mobility disabled. Addison Court, in the heart of Downtown State College–across the street from Webster’s Bookstore and Cafe–is a low income residence for the elderly and for those with physical and emotional disabilities. At Addison Court, the designated fire escape route is not wheel chair accessible. Instead, those of us with mobility disabilities (especially those living on floors two through eight) must wait for a fire woman or man to rescue us in the event of fire.
According to Steve Bair, Centre County’s excellent fire chief, there may be as many as 30 residences in the Borough of State College where a portion of the residents should be mindful that defend in place is their best safety measure.
Addison Court is in the advantageous position of being constructed of brick and of having an excellent sprinkler system. Five years ago, with the enthusiastic assistance of Mayor Elizabeth Goreham and with Steve Bair working closely with then Police Chief Thomas King the dangers of panic–responded quickly and effectively. The panic was averted. The panic had manifested itself in such dangerous behavior as residents throwing wheel chairs down the stairs–were averted with education and other measures including residents establishing a volunteer group (patrols on each floor).
In January, with the assistance of Addison Court’s efficient property manager Jim Hook, fire safety education will resume in the social hall/bingo parlor (where Lady Gaga has yet to accept an invitation to perform). Two weeks ago, having set up a meeting with Steve Bair, I asked Tom King (now retired as a police chief but working full time as a Borough Council staff member) for assistance. Consequently, Police Captain Mathew E. Wilson and Police Officer with a community relations portfolio joined us at Alpha Fire Company–an encouraging meeting. It is also worth noting that the current State College Police Chief John Gardner, whose career has been based here in the community, is a strong supporter of cooperation with Alpha Fire and Steve Bair.
Last week, Fire Chief Steve Bair told me about the disturbing deaths on December 5th of two residents at a multi-story apartment building in Wilkes Borough–a building disturbingly similar to Addison Court.
“Smoke was seen pouring out of the balcony of a fifth-floor apartment as fire crews evacuated the building, a public housing complex run by the Wilkes-Barre Housing Authority, reported Bob Kalinowski for the Scranton-based “The Times-Tribune.”
“The firefighters really had their hands full. Hundreds of people live in this building. They not only had to go in and extinguish the fire, but they had to rescue the occupants,” Delaney said. “The firefighters did an impeccable job. Yes, there were two people who didn’t make it out, but 150 or 160 people did without injury.”
Initially, fire crews called for ladder trucks from surrounding towns to come rescue people who fled to their outdoor balconies, but they decided against that option after getting a good initial attack on the fire, Delaney said.
++++
We residents at Addison Court are eagerly anticipating Lady Gaga’s acceptance of our invitation to perform at our social hall/bingo parlor. There, late in January, Fire Chief Steve Bair will be distributing ear plugs to muffle the sound of the fire alarm. Do not be concerned, Lady G, we will remove the ear plugs when you perform.
++++
2. At Mount Nittany Medical Center and HealthSouth Rehabilitation Hospital, patient outcome would be improved as well as employee moral if professionals in the field were to incorporate art and music into our hospitals.
3. A major effort is required to reduce the infant mortality rate in central PA and promote efforts to prevent women from having avoidable deaths–as are taking place in Texas–during childbirth.
4. The Commonwealth must pass legislation to ensure the intentions of the Americans with Disability Act are made a reality. Currently, a restaurant in State College was able to receive an operating license because it complied with the letter of the law and not its spirit. The restaurant spent more than the $4 thousand dollars to meet its disability requirement. It fulfilled its requirement by installing a wheel-chair accessible toilet. However, it did not first make sure the entrance is accessible–which it is not.
5. Last week Ed LeClair, who is in charge of planning for the Borough of State College, told me his department has no information on the current and future impact on the economy of the Borough of Foxdale and other upscale retirement communities which are growing in size.
6. On Valentine’s Day 2018, I am seeking funds to visit Stuttgart, Arkansas to research a forthcoming book on how to feed the 20 million people in the world currently starving to death. Arkansas is the largest rice-producing state in the U.S. Stuttgart is home to Riceland Funds, an important grain and soybean trading company. The technical savvy of Arkansas’s rice farmers could be critical to helping Zimbabwe improve its rice production. Zimbabwe used to be the breadbasket of the region of southern Africa. Restoring its ability to help Africa be self-sufficient in food production is critical in any effort to prevent unnecessary deaths from starvation.
Figure 1.1. Nadya Ludwig in her customary position watching the front door at Addison Court and greeting all 95 residents by name [1]
++++
Summary
The generation born after the Second World War is commonly referred to as “The Baby Boom Generation.” The U.S. Census Bureau provides statistics on Baby Boomers not as helpful as one would desire. The census definition begins in 1945 (when World War II ended) until the 1960s (when the birthrate began to decline). Only a portion of this demographic is useful for an understanding of housing requirements for the elderly and most especially the disabled. Disability rates are highest among those 65 and older–the focus for this analysis. [2]
This work is a natural outgrowth of a study I have been doing with Dr. Ali Memari of the Pennsylvania Housing Research Center (PHRC). The study is a guide to designing the entrance and interior of a single-family residence. Portions of this study (to be published independently) are included here to provide guidance on design decisions and principles required to understand methods that must be employed to make housing accessible. Especially helpful is the concept of “evidence-based design” which the architecture, construction, and engineering (AEC) community has embraced. [3]. One former president of the American Institute of Architects has described how evidence-based design has swept through her profession. More to the point, evidence-based design is the overriding principle (described in considerable detail both here and in the technical manual).
++++
The Problem with sociology–Not the digression it seems
The origins of sociology are not in question. The question: Is sociology a science?
When Émile Durkheimestablished sociology as an academic discipline before World War I, there was no question that sociology was a science. [4] Oh, how the mighty have fallen.
“Science]is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe,” writes Edmund Wilson in Consilience : The Unity of Knowledge. [5]
I regret to say sociology suffers from failed repute in academic circles. Sadly, this has affected adversely the academic community’s regard for the popularity of a book I love; viz. The Lonely Crowd by David Reisman et al. who after publication became Harvard’s Chairman of the Sociology Department. [6]
“In midcentury America, sociologists for a while rivaled even psychiatrists in their seeming ability to explain everything about everything. The most influential sociologist of the era was David Riesman… Originally intended for the college classroom, ”The Lonely Crowd” unaccountably landed on the best-seller lists and stayed there for months and months as thousands of Americans anxiously examined themselves and their neighbors for directional indications.
“In short, there’s nothing very rigorous about ”The Lonely Crowd,” but the book feels scientific all the same; its very structure imparts a suggestion of seriousness and gravitas.” This critique by New York Times writer Charles McGrath reflects distress within sociology academia. A notable Harvard sociologist who best expressed this distress is Orlando Patterson. Writing in The New York Times, Patterson states, “The dishonoring of David Riesman, and the tradition of sociology for which he stood, is not a reflection of their insignificance. It is merely a sign of the rise in professional sociology of a style of scholarship that mimics the methodology and language of the natural sciences — in spite of their inappropriateness for the understanding of most areas of the social world.”
The relevance of Dr. Patterson’s criticism to this critique is twofold. First, it is necessary to ensure this analysis is indeed science. Second, it is important to heed Dr. Patterson’s concern that a larger analysis of a problem is missing in the current academic wave of sociology’s repute. Hence I proceed with guarded optimism this analysis must indeed be science. This inquiry focuses on the significance of community when analyzing the effectiveness of renovating housing for the disabled. In doing so, I pay homage to the principles which Emil Durkheim asserted when he established sociology as an academic discipline. [7]
Fortunately, this analysis uses as its organizational construct the classic work by Robert S. Lynd and Helen Merrell Lynd two Columbia University-based sociologists whose work has consistently been held in high repute.
This analysis reflects its light from the considerable contribution of the Lynds’ 1929 study Middletown. [8] The study helped provide a structure to guide one to an understanding of disability housing and indeed disability and elderly equality. The intent of this analysis is to pour cold water on the sense of accomplishment one achieves from renovating a residence to make it wheel chair accessible. A residence in the wrong place is no residence at all. After all the elderly and disabled are best served by a public transit system also offering dependable para transit.
It is directly relevant to note the disabled and elderly are a group discriminated against considerably [9]. Let us first focus on the matter at hand; viz. renovating. While focusing remember there is a leitmotif here (the community where the renovation takes place) which will emerge as the goal of this analysis. The goal is integration of the house renovated for the disabled and the community without. Without complete integration access is incomplete and resources are wasted.
++++
Let us start with a house where the resident and principal source of income becomes disabled.
This is the house in where I lived when I lost the ability to walk in 1995.
++++
What follows is suggested bathroom design (with appreciation to Blueroof’s Experimental Cottage, McKeesport, PA) [10]:
++++
The Bathroom
The bathroom and bedroom are clearly the areas in the residence where accommodations are required for safety and other purposes. One example of an issue worthy of attention concerns the use of mobility devices useful for getting from room to room and whose function may affect the ability to make individual rooms accessible.
The issue of a sling an individual can use without assistance to lift oneself up from wheelchair to toilet seat or from bed to wheelchair has a significant effect on the process of home renovation.
Figure BR 1. Sensor warning of fall hazard
For individuals with mobility problems, the bathroom is the most dangerous room in the house. It can be wet leading to falls. Clients may be impatient to get in and out quickly thus lending to its danger. There may be inadequate rails. Depending upon when the residence was built, the entrance and exit may be uncomfortably narrow. This might be a good place to consider removing walls and widening the hallway.
Entrance and exit
In many older residences, the path leading to the bathroom is a narrow one. Figure BR2 shows the client using a mobility device to come from the bedroom [behind] in the direction of the refrigerator [ahead].
Figure BR2. Narrow bathroom entrance
The width of the hallway with the bathroom door closed is 41 inches. ADA standards call for a width of 48 inches. The reader may not help but notice that because of a shortage of electrical outlets, the toaster is on the floor.
Figure BR3. The hazards of a narrow bathroom door.
With the bathroom door open the width is only 38 ½ inches. Figure BR3 shows what happens when a powerful power chair, driven by a client impatient to get to the bathroom, collides with the door. A door in a narrow hallway causes difficulties for an individual riding a mobility device including the problem of being able to close the door.
++++
One solution is a pocket-door once fashionable in the late 19th Century which is making a comeback especially for those modifying homes for greater mobility.
Figure BR4. Sliding pocket doors
Clients using the bathroom sink below must go elsewhere, to the kitchen sink for example (or bring along their own mirror) to comb hair, apply makeup, shave, and perform other daily rituals.
A lower sink and mirror set are the most immediate solution. Two grab bars at the base of the sink would make it easier for the individual with a mobility disability to stand or maintain balance. A specially designed sink located elsewhere in the residence could save on remodeling costs. Below is a sink installed at an appropriate height in a residence bedroom which can be modified for individual requirements.
Figure BR5. Bathroom sink
Insertion of an additional sink (either in the bathroom or elsewhere in the residence) also is useful to minimize bathroom accidents can be cleaned up without becoming a major issue)
Other bathroom considerations include:
Where to put one’s cane, crutches, or park one’s mobility device
Storage of toiletries so they are accessible
Bathroom sink
Clients using the bathroom sink must go elsewhere, to the kitchen sink for example (or bring along their own mirror) to comb hair, apply makeup, shave, and perform other daily rituals.
Figure BR6. Kitchen sink (provides options not available at bathroom sink)
+++
Toilet
Going to the toilet requires more prudence than adults without disabilities require. A mobility disability, by its nature, means it takes more time to get from one place to another. Individuals used to going to the toilet on a schedule comfortable to them before they became disabled may be surprised at how much extra time they must factor in.
Figure BR7. Toilet
The toilet shown above should be reassuring. The two grab bars are sturdy and well-positioned. However, it is always helpful to make sure the toilet seat itself is securely fashioned and to check each time before using.
For individuals with transference issues, there are transfer boards for going from wheel chair to toilet:
Figure BR8. Toilet transfer board
This is a convenient way of transferring from a mobility device to the toilet. Less elaborate transfer boards are available. For those with more serious mobility problems, a sling attached to the ceiling is recommended or one might consider installing tracks on the ceiling so a device the individual can use by oneself can easily be moved from the bedroom where it lifted the individual from bed to wheelchair.
++++
Use of a sling
Figure BR9. One of a wide variety of slings
Within the past five years, two developments have made it practical for individuals with severe mobility disabilities to live independently. The first is the development of a sling an individual can use oneself for transference. The above is not a good photograph and should be replaced with a better one. The second development is the use of the ceiling as a method for locomotion; namely, one puts oneself in a sling attached to the ceiling; tracks along the ceiling make it possible to move across the residence, and one can lower oneself to, for example, a bed or a wheelchair in the kitchen. Notice the ceiling tracks:
++++
Ceiling
Last year, I saw a trailer developed by Blueroof Technologies in McKeesport, PA for the use of veterans whose lower limbs had been amputated. The veteran was able to go by sling and ceiling device from bed to bathroom to kitchen for breakfast and then out into the world on a mobility device. Not all this information is relevant to the bathroom.]
Figure BR10. Ceiling tracks
Toilet
If the individual does not allow enough time to position oneself at or on the toilet, accidents can occur just when they seemed most avoidable. Individuals who have not experienced an accident since childhood and who assumed such problems would not occur for decades find themselves discouraged when an accident occurs. For individuals who suddenly experience mobility problem, incontinence may be a temporary consequence and it is useful for the individual to understand that temporary means temporary.
++++
Bathroom fixtures
Figure BR11. A convenient dispenser
Figure BR12. Shower head for roll-in shower
++++
Figure BR13. Shower head ready for use
++++
Figure BR14. Shower head ready to be put back in place
+++
Figure BR15. Standard shower chair
Bathtubs
Conventional bathtubs, such as the one below, provide problems involved with getting in and out. The market place, using slings and transfer boards, does make it possible for individuals with mobility difficulties to take baths. However, a roll-in shower, unless other considerations are involved (e.g. skin disorders, the requirement to soak limbs, and the like), the roll-in shower is probably the most cost effective.
Figure BR16. Think twice about getting into this bathtub
Off the shelf technology gives residents an added level of protection. Figure BR1 shows a motion detector in the bathroom. Motion detection makes it possible to alert caregivers (by a voice simulator automatically calling 911 or another number) if someone slips in the shower, for example, and does not get up according to a pre-programmed time schedule. The cost of this technology is relatively modest and has been falling steadily.
++++
Imagine using this imaging technology displayed for design and working out such issues as how to get from scooter to bath chair? One might:
Turn the scooter around so water does not fall on the controls
Back up to the shower chair
Swivel the scooter chair locking it into place.
A hand rail would be useful to go from scooter chair to shower chair.
++++
Figure BR17. Virtual reality is helpful when going to the shower
References
Footnotes
I am sad to say that Nadya Ludwig is dead. Nadya and Lilian H. served as greeters at Addison Court’s hug a firewoman and man on Valentine’s Day. The event was held at the bingo parlor across from my apartment. Each left the low-income disabled and elderly housing complex in which I live in an ambulance.
Books
Doidge, Norman (2007). The Brain That Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science. New York, NY. Penguin Books.
Durkheim, Émile (1897; 2006 translation). On Suicide. Trans. Robin Buss. London, England. Penguin Books.
Gratz, Roberta Brandes (2010). The Battle for Gotham, New York in the Shadow of Robert Moses and Jane Jacobs. New York, N.Y. Nation Books.
Hamilton, D. Kirk & Watkins, David H. Watkins (2009). Evidence-Based Design for Multiple Building Types. Hobokin, NJ: John Wiley & Sons.
Jacobs, Jane (1961). The Death and Life of Great American Cities. New York, N.Y. Vintage Books.
Keesing, Roger M. (1976). Cultural Anthropology, A Contemporary Perspective. New York, N.Y. Holt, Rinehart, and Winston.
Kottak, Conrad Phillip (20080. Cultural Anthropology, Twelfth Edition. New York, N.Y. McGraw-Hill.
Kunstler, James Howard (1993). Geography of Nowhere, The Rise and Decline of America’s Man-Made Landscape. New York, N.Y. Simon & Schuster.
Lynd, Robert S. and Lynd, Helen Merrell (1929). Middletown, A Study in Modern American Culture. New York, N.Y. Harcourt Brace Jovanovich.
Riesman, David; Glazer, Nathan and Denney, Reuel (1950). The lonely crowd : a study of the changing American character. New Haven, CT. Yale University Press.
Solkoff, Joel (1981). Learning to Live Again, My Triumph Over Cancer. New York, N.Y. Holt, Rinehart, and Winston.
Wilson, Edward (1999). Consilience: The Unity of Knowledge. New York: Vintage.
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:
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.
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.
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.
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.
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.
Highlight the work of Penn State’sSmart 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.
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.
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:
Ambulance parked in front of my bedroom window waiting to pick up a neighbor
Ambulance parked in front of my bedroom window waiting to pick up a neighbor
Today is Sunday, February 26, 2012. I took the photograph above last week. My apartment is within an eight-story building housing 90 low-income elderly and disabled individuals, an ambulance parks outside my window at least once a week. Sometimes my neighbors and I return. Sometimes, not. The cost for Medicare, Medicaid, and other services to go on the gurney ride to the hospital and beyond is many times higher than the cost of preventing and treating.
The following article appeared in the October, 2011 issue of HME News and it still reflects an ongoing concern. Following the article, I will provide a memorial note on one of the residents who did not return.
+++
The money saved as a consequence of concentrating on what is right will astonish the body politic
” I have saved up enough pills to kill myself,” a neighbor told me, “if I ever have to go to Centre Crest.”
I live in an independent housing apartment building in downtown State College, Pa. The nearly 100 residents of Addison Court are disabled or elderly. Most of us are poor–the more affluent are on Social Security or Social Security Disability and Medicare.
At least once a week, the ambulance stops by my window and a resident goes off to the hospital. The lucky return. The not-so-lucky move on to Centre Crest, the default public nursing home about 11 miles away, where assisted living means expensive round-the-clock care, diaper changes, attachment to machines that keep the biological aspects of life going, medical personnel who make sure medications are taken correctly, and a world view that echoes Dante’s inscription over Hell: “Abandon hope, ye who enter here.”
Last year, Pennsylvania’s Department of Aging estimated it costs Medicare $40,000 extra each year for a resident to move from an independent living to an assistive living facility. The loss of dignity to the individual is incalculable.
The French philosopher Jean Paul Sartre observed that when one tries especially hard to listen, often the trying gets in the way of hearing. Medicare is trying too hard to do the wrong thing. Medicare‘s purpose is not to save money, but to provide health care in a way that concentrates on improving the quality of life. Recent evidence on the brain’s adaptive capacity provides hope that not only can individuals resume physical capacity from the devastation of a variety of afflictions that affect us at Addison Court, but also we can regain our talents to improve this society, not simply take from it.
“The Brain that Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science,” by Columbia University’s Norman Doidge, M.D., points to the brain’s ability to recover from strokes and other disorders with rehabilitation and concern.
“Traditional rehabilitation,” Doidge writes, “typically ended after a few weeks when a patient stopped improving, or ‘plateaued.’ And doctors lost the motivation to continue. But…these learning plateaus were temporary…Though there was no apparent progress in the consolidation stage, biological changes were happening internally, as new skills became more automatic and refined.”
The Obama administration’s penny-wise-and-pound-foolish cutbacks on availability to durable medical equipment, rehabilitation services, and home health care are forcing residents of independent living facilities into the Centre Crests of this country. For example, the narrow focus is apparent in Medicare‘s frequent citations of the Congressional Budget Office‘s competitive bidding estimates of relatively insignificant savings for Medicare Part B ignoring the astronomical costs that will result to Part A when disabled individuals like me can no longer pick up the phone and call my local medical equipment provider. Instead, I must wait for a competitive bidding winner (several have unsavory reputations and some are based out-of-state) to provide a battery. Delays could easily force me into Centre Crest as a result of falls, problems getting to the bathroom, etc. Delays would rob me of the ability to work as an adviser on virtual reality models for construction of future aging in place housing–construction which will result in significant Medicare savings.
Medicare is discouraging the necessary alliance between rehabilitation therapists and medical suppliers. This alliance will help restore the ability of my fellow residents to function and contribute to society.
“Individuals with disabilities remain one of our nation’s greatest untapped resources,” said Rep Jim Langevin, D-R.I., the only quadriplegic in Congress. To release the untapped resources of the elderly and disabled, Medicare must stop thinking about saving money and start thinking about improving health. The money saved as a consequence of concentrating on what is right will astonish the body politic. Providers of durable medical equipment require the support of consumers like me. Providers and rehabilitation therapists have been slow to recognize that in unity there is strength. Together they must spread the word that when an individual becomes old or disabled, science is rapidly increasing the ability to regain talent and good health.
–Joel Solkoff is the author of “Learning to Live Again, My Triumph over Cancer” and is adjunct research assistant at Penn State’s Department of Architectural Engineering.
+++
Memorial Note: Tonight, November 14, 2011, Jack Seidner aged 93, my neighbor and friend at Addison Court, State College. PA, died while talking to his son who had called from Israel. He died at Centre Crest, an assistive care facility in Bellefonte, PA, 11 miles from Addison Court.
Jack was a veteran of World War II and was a monthly calendar boy on the Jewish War Veterans calendar last year He will be buried beside his wife in Harrisburg at a private funeral.
Jack was a wonderful man. He was basically an intellectual although he hid it as much as possible. When I wrote a story about home medical oxygen, oxygen which he received to stay alive, he refused to be photographed saying, “I have been studied enough.”
His sense of humor was ever-present, sometimes to the point of reciting bawdy limericks to the residents of Addison Court. I will miss him. He died at Centre Crest. The article below, originally published in HME News on September 27, 2011, is dedicated to his memory. In these days of turmoil at Penn State University, the need to care for the real needs of this community should be apparent.
This Lady shattered my consciousness. Not paying much attention to the fact that Lady Gaga was on the cover of September’s Vanity Fair, I bought the issue anyway. I buy Vanity Fair for the political reporting and because it is one of the best paying magazines for writers. I figure buying and reading a copy is like buying a lottery ticket. You can’t win if you don’t play.
The cover story on Lady Gaga says, “She is, without question, the world’s biggest pop star—with 12 million sales worldwide of her 2008 debut album (The Fame and bonus disc The Fame Monster). She had six No.1 hits on the Billboard charts: Just Dance, Poker Face, Love Game, Paparazzi, BadRomance, andTelephone. She has had close to 800 million viewers of her videos on YouTube. She recently broke the record on Facebook with more than 12 million fans—surpassing those of President Obama.”
Then, Lady Gaga became a political activist.Lady Gaga has close ties to the gay community. Indeed, there have been rumors that Lady Gaga is a man in women’s clothing—a rumor effectively quashed in a startlingly revealing scene in the brilliantly made video Telephone in which two prison guards strip her to determine that she is a woman. “Pity,” one guard says to the other guard.
Telephone is about a telephone call that takes place in a woman’s prison in which the astoundingly beautiful Beyoncé plays a featured role. I do not know whether Lady Gaga is beautiful or whether her songs are great music because she is basically a magician and I love her with a love that is more than a love.
At the end of September Lady Gaga engaged in one of the most bizarre forms of lobbying I have ever experienced. Groups such as the Service Members Legal Defence Network asked Lady Gaga to ask senators primarily REPUBLICANS to repeal the “Don’t ask; don’t tell policy” established during the Clinton Administration in which gays can serve in the military as long as they do not reveal their homosexual proclivities.
News 24 Entertainment Celebrity News reported: “In a black-and-white video posted on her website, the singer is dressed in a modest suit and tie, with a US flag as a backdrop, and looks somberly into the camera as she describes how ‘gay soldiers have become targets’ under the 1993 rule that has seen 14.000 Americans discharged from military service, ‘regardless of how honorable or how valuable they may have been to their units.’”
This story of a lobbying effort that began as a Twitter tweet was covered extensively. For another version as well as the tie in to the meat dress (at the Google prompt type in “Lady Gaga’s meat dress”); first, though, key in, “Lady Gaga lobbies Republican senators.”
The reason REPUBLICANS were targeted primarily has to do with the way the U.S. Senate conducts its business, a discussion that is too long for now. There were not enough Democrats willing to vote for gay rights and there were enough moderate Republicans who could have made the difference. Lady Gaga personally lobbied Senator Sue Collins of Maine, who said on the floor that she was in favor of abolishing Don’t ask; don’t tell. If she had voted then and there to follow her own convictions, then her vote would have made the difference. Instead, she chose not to vote for “procedural reasons” which the panel of Washington Week in Review said meant that in this election year, Senator Collins did not want to give the Democrats a win.
The following is Lady Gaga’s lobbying YouTube video. When she’s old enough (minimum age is 30), can you picture Lady Gaga in the U.S. senate? I can.
Lady Gaga says in the video that she is against all kinds of discrimination. I would like to enlist Lady Gaga’s help in helping solve ongoing problems here in State College regarding our disabled and elderly residents.
Lady Gaga is especially equipped to be helpful in this regard given her sensational video Paparazzi. Her lover throws her off a balcony and she emerges in a wheel chair, holding on to forearmed crutches (such as the ones I have in my closet): While she uses the crutches to get up, she is wearing a silver bodice, tight and revealing, singing:
“I’m your biggest fan/ I’ll follow you until you love me/ Papa-Paparazzi/ Baby there’s no other superstar/ You know that I’ll be/ Your Papa-Paparazzi./”
As she sings she wears a neck brace studded with jewels.
[Fashion note: Suggestion to Lady Gaga. You might want to consider wearing a better class of brace when doing future versions. The forearm crutch comes in a number of variations. The top of the line is the Lofstrand forearm crutch (also known as the Canadian crutch) in wood. I saw a Mexican soap opera star who wore forearm crutches in oak which was polished to gleam and made him look very sexy. I have spent more time than I care to admit looking for a Lofstrand crutch in wood. Wooden versions of the crutch were commonly available 10 years ago, but comfort (aluminum and other materials are lighter) has given way to beauty. If, oh Lady, you decided to go with gleaming oak, I will find you a sexy crutch. As for a wheelchair, what you need is a scooter. Suggested manufacturers include Amigo, made in the USA. and Pride, designed in Scranton, PA. The movement where your sycophants carry you effortlessly up a stair, she be redone to make it clear that you and the chair are heavy.]
What I want you, oh dear Lady Gaga, as a disability and elderly rights advocate here in State College, Centre County, Pennsylvania to do is:
Sing for us at noon at the bingo parlor at Addison Court, 120 East Beaver Avenue, State College. Addison Court is an independent residence for the elderly and disabled. There are 90 of us. Several of us could use cheering up. We do not get to hear a lot of live music. Dazzle us.
Advocate for us. After Florida, Pennsylvania has more elderly residents than any other state in the union. Centre County is attracting large numbers of elderly residents who retire here. Yet the music venues in Downtown State College are closed to us because Downtown businessmen do not think it is worth their while to provide access so people using canes, wheelchairs, walkers, scooters, and power chairs can listen to live music.
Meanwhile, you could do a lot to increase opportunities for elderly and disabled residents of my town.
Come on by. Use your wealth to buy a front-wheel drive
Then drive around town and tell Marilyn Tavenner, (as of December 2011, not yet confirmed), Acting Administrator of the Center for Medicare and Medicaid Services what it feels like to use mobility equipment to get around and then to get stuck.
“I’m your biggest fan/ I’ll follow you until you love me/”
+++
Note: Here at Addison Court, we still have a candle lit to guide Lady Gaga to our bingo parlor.
The following appeared in HME News, the publication for the home medical industry, on July 26, 2011. This year and last, I asked the residents of Addison Court, the low-income apartment for disabled and elderly in State College where I live, to attend a demonstration at the Immersive Construction Lab, described here.One of the participants was Lilian Hutchison, who celebrated her 87th birthday in January. No one can say for sure whether Lilian would have fallen several times in her apartment if this kind of technology were in place. However, the hope is that the future will be kinder to those of us who can benefit from design which residents are able to modify in advance.
The projectors behind the three, 8-foot screens show a virtual reality world that can improve the environment where home medical equipment HME is used. Professor John I. Messner’s Immersive Construction (ICon) Laboratory at Penn States Architectural Engineering Department is a dark, windowless room where the healthcare facilities being viewed seem so real there is a special world for it: immersion.
When Kaiser-Permanente began constructing a medical building in downtown Washington, D.C., pharmacists traveled 140 miles to State College to see how their workplace would appear. Among their suggestions: a partition so when two patients are served simultaneously, their privacy is insured.
There is substantial growth in constructing healthcare facilities from hospitals to housing for the elderly. Previously, a model of how a building would look required physical materials like wood and nails. By comparison, virtual reality offers interactive models early in the design process. The resulting efficiency and cost savings (making changes to a building before it is built) are creating a boom in the use of virtual reality in the architectural, engineering and construction (AEC) industry. Expectations exceed the ability of the AEC industry to have virtual reality applications ready as quickly as desired.
Gala with residents of Addison Court at the Immersive Construction Lab
Sonali Kumar, a graduate research assistant at Penn State, is developing a 3-D model for an independent living facility for elderly and disabled individuals based on the concept of experience-based design. Experience-based design often refers to a body of academic literature, primarily health-care related. Designers are urged to consider the perspective of the individuals who build, maintain, work and reside in the facility, including patients and residents. A common example is the decision of a Philadelphia hospital to build its bathrooms closer to patients beds.
My perspective on Sonali’s effort comes from my status as a disabled resident of a primarily elderly independent living facility. For example, I look at an early version of Sonali’s model showing a bathtub in the bathroom and say, No. There should be a roll-in shower here. I show an early prototype to Travis Barr, co-owner of T & B Medical here in State College. While fixing my scooter, Travis says, “There should not be cabinet doors in the kitchen. Doors are a nuisance for people with disabilities.”
Sonali’s model is based on a Blue Roof Technologies cottage in McKeesport, Pa. Pennsylvania has a larger number of elderly people in its population than any other state except Florida. The need for elderly housing is acute. In McKeesport, where the factory for steel pipes closed down leaving a near-ghost town and an elderly population of more than 20%, Robert Walters, a retired Penn State professor, created Blueroof. The cottages are constructed of pre-fabricated housing and have special sensors inserted in the walls to remind residents when to take their medicine (the walls talk) and to call 911 if a resident falls and does not get up in a timely fashion.
Sonali’s model of a Blue Roof cottage makes use of interaction, the most significant new development in virtual reality. Look at the screen shot Sonali took of the power chair inside the kitchen of her model cottage. For those readers who have not spent their productive hours playing video games, an avatar is a virtual reality representation of an actor functioning in a 3-D environment. The avatar in the Sonali’s kitchen is a power chair. The power chair makes coffee and toast, opening the refrigerator door to get eggs and milk, and scrambles eggs on a stove the avatar has just turned on. Interactivity is key to understanding how practical people in the construction industry have come to use 3-D technology for practical purposes.
Interactivity is arrived at slowly as Sonali experiments with a wide range of software. I suggested that Sonali replace the 3-D power chair with a scooter. In my experience, a scooter is more mobile and less likely to damage walls and take bathroom doors off their hinges. I ask a manufacturer to provide a 3-D scooter file, but for reasons I cannot explain (because I do not understand), the file does not yet open. Sonali explains, “We are in the process of integrating the computer model obtained from Amigo Mobility.” Keep your 3-D glasses on and await future developments.
Joel Solkoff writes about disability issues from a customer perspective. He is an adjunct research assistant at the Department of Architectural Engineering at The Pennsylvania State University.
Memorial Note: November 13, 2011, Jack Seidner aged 93, my neighbor and friend at Addison Court, State College. PA, died while talking to his son who had called from Israel. He died at Centre Crest, an assistive care facility in Bellefonte, PA, 11 miles from Addison Court.
Jack was a veteran of World War II and was a monthly calendar boy on the Jewish War Veterans calendar last year He will be buried beside his wife in Harrisburg at a private funeral.
Jack was a wonderful man. He was basically an intellectual although he hid it as much as possible. When I wrote a story about home medical oxygen, oxygen which he received to stay alive, he refused to be photographed saying, “I have been studied enough.”
His sense of humor was ever-present, sometimes to the point of reciting bawdy limericks to the residents of Addison Court. I will miss him. He died at Centre Crest. The article below, originally published in HME News on September 27, 2011, is dedicated to his memory. In these days of turmoil at Penn State University, the need to care for the real needs of this community should be apparent.+++
Saving Medicare billions: Trying too hard can get in the way
The money saved as a consequence of concentrating on what is right will astonish the body politic
“I have saved up enough pills to kill myself,” a neighbor told me, “if I ever have to go to Centre Crest.”
I live in an independent housing apartment building in downtown State College, Pa. The nearly 100 residents of Addison Court are disabled or elderly. Most of us are poor–the more affluent are on Social Security or Social Security Disability and Medicare.
At least once a week, the ambulance stops by my window and a resident goes off to the hospital. The lucky return. The not-so-lucky move on to Centre Crest, the default public nursing home about 11 miles away, where assisted living means expensive round-the-clock care, diaper changes, attachment to machines that keep the biological aspects of life going, medical personnel who make sure medications are taken correctly, and a world view that echoes Dante’s inscription over Hell: “Abandon hope, ye who enter here.”
Last year, Pennsylvania’s Department of Aging estimated it costs Medicare $40,000 extra each year for a resident to move from an independent living to an assistive living facility. The loss of dignity to the individual is incalculable.
The French philosopher Jean Paul Sartre observed that when one tries especially hard to listen, often the trying gets in the way of hearing. Medicare is trying too hard to do the wrong thing. Medicare‘s purpose is not to save money, but to provide health care in a way that concentrates on improving the quality of life. Recent evidence on the brain’s adaptive capacity provides hope that not only can individuals resume physical capacity from the devastation of a variety of afflictions that affect us at Addison Court, but also we can regain our talents to improve this society, not simply take from it.
“The Brain that Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science,” by Columbia University’s Norman Doidge, M.D., points to the brain’s ability to recover from strokes and other disorders with rehabilitation and concern.
“Traditional rehabilitation,” Doidge writes, “typically ended after a few weeks when a patient stopped improving, or ‘plateaued.’ And doctors lost the motivation to continue. But…these learning plateaus were temporary…Though there was no apparent progress in the consolidation stage, biological changes were happening internally, as new skills became more automatic and refined.”
The Obama administration’s penny-wise-and-pound-foolish cutbacks on availability to durable medical equipment, rehabilitation services, and home health care are forcing residents of independent living facilities into the Centre Crests of this country. For example, the narrow focus is apparent in Medicare‘s frequent citations of the Congressional Budget Office’s competitive bidding estimates of relatively insignificant savings for Medicare Part B ignoring the astronomical costs that will result to Part A when disabled individuals like me can no longer pick up the phone and call my local medical equipment provider. Instead, I must wait for a competitive bidding winner (several have unsavory reputations and some are based out-of-state) to provide a battery. Delays could easily force me into Centre Crest as a result of falls, problems getting to the bathroom, etc. Delays would rob me of the ability to work as an adviser on virtual reality models for construction of future aging in place housing–construction which will result in significant Medicare savings.
Medicare is discouraging the necessary alliance between rehabilitation therapists and medical suppliers. This alliance will help restore the ability of my fellow residents to function and contribute to society.
“Individuals with disabilities remain one of our nation’s greatest untapped resources,” said RepJim Langevin, D-R.I., the only quadriplegic in Congress. To release the untapped resources of the elderly and disabled, Medicare must stop thinking about saving money and start thinking about improving health. The money saved as a consequence of concentrating on what is right will astonish the body politic. Providers of durable medical equipment require the support of consumers like me. Providers and rehabilitation therapists have been slow to recognize that in unity there is strength. Together they must spread the word that when an individual becomes old or disabled, science is rapidly increasing the ability to regain talent and good health.
Joel Solkoff is the author of “Learning to Live Again, My Triumph over Cancer” and is adjunct research assistant at Penn State’s Department of Architectural Engineering.
[Note: I was diagnosed and treated for cancer in 1976 when I was 28 years old. This is how I described the experience when I was in the midst of my first round of radiation treatment.]
A New Lease on Life by Joel Solkoff, November 26, 1976
I am 28 years old and I have cancer. Anger comes before anything else. There are times that the anger becomes overwhelming, turns to frustrated rage, because there is no one to be angry at. I can curse God which I’ve done many times, but it is unsatisfying because God doesn’t shout back. Crying helps.
I started weeping in the hospital. An intern; frightened by the emotion, asked me to stop, She said I was upsetting the other patients. I told her to get lost, and when I was done weeping I found her and shouted at the top of my lungs, “You’re what’s wrong with doctors. You have no feelings!” It felt good to shout at someone.
My form of cancer was first described in 1832 by Dr. Thomas Hodgkin—after whom it is named—and its cause is still a mystery. It is a disease of the lymphatic system, clogging the body’s ability to purify the blood and thus to fight off infection.
The cancerous tumors, which are enlarged lymph nodes, may also take over nearby vital organs, such as the liver and lungs. Because the tumors are part of a system that circulates throughout the body, surgical removal generally does not remove the disease. A microscopic piece of tumor may remain in the body, or whatever caused the gland to grow abnormally large may already be elsewhere. Such problems made Hodgkin’s disease extremely difficult to treat and meant that, until quite recently, it was described as “universally fatal.”
In my lifetime, advances in treatment have been so successful that it appears unlikely that the disease will affect my lifespan or that I will feel its effects. Many techniques are so new that we patients haven’t lived long enough to establish whether we’ve been “cured.” The other day, as the technician adjusts my body under the linear accelerator, she said, “If I had to pick a disease to have, I’d pick yours.”
During the months of incapacitation, Ihave slowly begun to appreciate that I am fortunate to be living in these times. The process began when a lump under arm right arm did not go away. The lump did not hurt; it wasn’t even uncomfortable, but seeing a doctor seemed sensible. My appointment was on a Friday afternoon, and when the internist grabbed the phone, told me to run three blocks to the nearby surgeon, and then reassured me “not to worry,” I was frightened. Removing the lump, under a local anesthetic, hurt less than I had feared. After an assortment of pathologists had looked at sections of the lump under a microscope and after one misdiagnosis (Hodgkin’s disease is a difficult cancer to identify), my internist’s suspicions were confirmed.
Then came tests. To treat the disease it was first necessary to know where it was located. I was injected with isotopes So that my liver would show up on a television screen. Marrowwas taken from the hip bone. There were blood tests and X-rays. My feet were slit open so an opaque fluid could run through the lymphatic system.
Finally, there was abdominal surgery. Its purpose was exploratory, but the pain afterwards was overwhelming. Screaming for more relief than the drugs could give, I was oblivious to the long-term beneficial result. I had always thought that pain was either avoidable or imaginary.
As soon as I recovered from surgery, the internist prescribed the treatment–radiation. The radiology lab is in a basement, and most of us walk in off the street as outpatients. When patients come in for the first time, their names are placed on a blackboard, with the name of the disease and of the doctor. Etiquette forbids the placing of numbered odds, but most patients do not share my apparent good fortune.
I go into the room where X-rays are sent through my body every day for 12 weeks. The process takes a few minutes and is painless. The rays kill all cells the area at which the machine is focused. Because cancer cells multiply more rapidly than normal cells, the rays do more lasting damage to the cancer cells. However, since cells are killed indiscriminately, treatments make me feel weak and weepy.
I have trouble swallowing. The hair on the back of my neck has fallen out –temporarily. I have severe skin burn. My stomach feels queasy and I spend a lot of energy fighting the urge to vomit. Slowly, I have come to understand that life has been given to me for a second time.
+++
Joel Solkoff is author of the forthcoming book “You Reap What You Sow: How the Government Regulates Agriculture.”
