Tag: HME News

My credentials for writing an academic paper on renovating existing housing for residents with a mobility disability

This is a photograph of the house where I lived when I lost the ability to walk.

42-kimberlyresized

The year was 1995. I was 48 years old. I lived with my wife and two daughters–Joanna age 9 and Amelia age 4– in Durham, N.C.  I was working as a technical writer  for Northern Telecom. Northern Telecom manufactured large telephone switches. My job was to explain to companies how to operate sophisticated software located on a switch.

Across the road from my office (at nearby Research Triangle Park) was a research facility encircled by a jogging track. I regularly jogged on the track. During a six-week period in 1995, I went from being able to jog on the track to being unable to walk at all. Indeed I became unable to stand without holding or leaning on to an object such as a wall, a desk, a chair, a bed….

During this period when my mobility was getting rapidly worse, I spent a lot of time going from doctor to doctor to find out what was wrong. My insurance required I begin the quest at my primary care physician’s office. My physician referred me to a neurologist for tests. The neurologist referred me to the Neurological Clinic at Duke University. The head of the clinic suggested I speak to an oncologist.

I had been treated with high doses of radiation administered by a linear accelerator. Radiation was the treatment recommended because I had been diagnosed as having Hodgkin’s disease, a cancer of the lymphatic system. I was treated in 1976. When a tumor reappeared in 1989, I was treated with radiation again. I was surprised to discover my mobility problem was a consequence of radiation treatment. My radiologist in 1989  told me before beginning treatment the likely side effects. However, paraplegia was not one of the side effects listed. Nor, had my primary care physician associated my mobility problem with my cancer treatment.

The head of the oncology clinic at the University of North Carolina at Chapel Hill determined  my mobility problems were  a consequence of radiation burning my spine. The oncologist compared the radiation burn to that of a small fire getting larger. At some point; namely, 1995, he explained, the fire had become sufficiently large as to destroy my mobility.

The oncologist prescribed large doses of a steroid drug. He said the drug probably would not work. However, “You have nothing to lose by trying.” The steroids did not work. In fact, the drug had considerable nasty side effects. It was during the period that I was on steroids that I fell in my house and dislocated my right shoulder.

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Raison d’etre for this post.

I am co-authoring a technical report entitled, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently.” When completed, the report will be published as a technical paper on the website of the Pennsylvania Housing Research Center.

For  purposes of comparison, an already published report is entitled, “Impact of Building Codes on Exterior Plaster Assemblies in Pennsylvania.” If you have time, take a look:

 http://www.phrc.psu.edu/assets/docs/Publications/PHRC%20Final%20Stucco%20Report.pdf

Even a cursory glance makes clear this report follows the rules for academic publications. Citations are required for statements of fact.  The appropriate generic style manual regarding how to make citations is the Publication Manual of the American Psychological Association (APA). The APA style manual is the one most helpful to faculty, postgraduates, and graduate students at Penn State’s Department of Architectural Engineering . The APA manual is  (easily modified to comply with the modest variations contained in engineering manuals especially when using Zotero)  for such academic publications as:

While planning the PHRC report, I asked  Dr. Ali Memari, Director of the Pennsylvania Research Center and my co-author, the rules for citing my observations on renovation strategy and priorities based on my 21 years experience as a paraplegic.

Specifically, after re-reading a portion of the report I had written, I realized statements of fact required citation. Given “fact” (as I used it) was based on my knowledge and experience, I was concerned academic scholarship required an authority to confirm it.

Dr. Memari replied no citation is required because I am an expert. Of course, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently”  does require citations regarding matters of fact NOT based on my expertise.

I have been incorporating citations from such sources as:

The more I looked at the citations I am incorporating, the more I realized that it could be useful to cite myself. In the past 21 years since I became a paraplegic, I have been published widely on the subject of renovating housing for the disabled and elderly.

Here are three examples:

  • For e-architect.co. UK,  a website receiving nearly one million hits a day from the global building community see: “Zaha Hadid’s Miami compared to my life in rural “Rust Belt” Pennsylvania.” This is one of the columns I have been publishing on disability issues for the past four years. In the discussion of “Rust Belt” PA, I discuss Blueroof Technology’s research cottage in McKeesport. At Blueroof, Penn State Engineering Professor Robert Walters designed housing for low-income disabled residents. He inserted sensors at factory-constructed housing which instantly notify caregivers if a resident falls in the shower
  • For Seeking Alpha–a site focused on financial and investment advice–see“Marketing Opportunities As A Consequence Of ‘Baby Room’ Retirement”
  • For the publication of the home medical equipment industry, see HME News: “Put on your 3-D glasses.” The article discusses Dr. John Messner’s Immersive Construction (ICon)Lab  at Penn State. The emphasis is on designing health-related projects, including the ability to transform existing housing so it is accessible to the mobility disabled.

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Regarding “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently” the report  explains that the ideal client for the architect, general contractor, or specialized subcontractor (e.g., the person installing the ramp to enter and exit the residence) is the person who has become disabled. Ideally, she or he should be directing the architect or general contractor or other provider of renovation.

Academic publications describe a house renovated by the person residing in it as “experienced-based design.” Individual preferences do matter. For example, my kitchen does not have any cabinet doors. Anyone entering my kitchen can see at a glance I have several cans of tomato soup. I do not care if you know I have tomato soup. Some people do care. This may not seem a significant design concern. However even seemingly insignificant concerns can matter.

When I became a paraplegic suddenly without warning, I was too overwhelmed to make design decisions. Also, my physicians had prescribed medication that impaired my judgement. In essence, my caregivers were making design decisions while I was otherwise distracted. Design decisions [even no action is a design decision] are most productive when made by a caregiver who has my preferences in mind when telling the architect how to proceed.

Today’s post begins a series designed to document my expertise as a paraplegic. My intention is to provide supplemental (and presumably helpful) detail to readers of the PHRC report I am co-authoring . There are a variety of instances where explaining how I developed my expertise can be useful. Today, I think it useful to describe my state of mind which led to my dislocating my shoulder.

I plan future posts targeted to the report to provide supplemental information on such subjects as:

  • The telecommunications concept of “transparency” as it relates to disability access. Accessibility is most effective when access is so designed that the person with a disability is not continually reminded that he or she is disabled. The chapter on getting to the second floor presents this concept most clearly. Getting into an elevator or a lift is far preferable than taking a stair lift. A stair lift requires one transfer from a mobility device to stair lift. Then, at the top of the stairs, for mobility, transfer to another mobility device is required. Worthy of note is in the past 10 years, elevators have become considerably less expensive. At the same time, manufacturers have developed technology to make it easier to install an elevator throughout a residence, rather than require it be attached to a shaft.
Photograph taken March 13, 2016 showing permanent damage to my right shoulder. Had my residence been renovated appropriately to accomodate my mobility disability, I would not have experienced 21 years of pain and lack of use. Alicia J. Spence, my physical therapist at Phoenix Rehab, State College, PA says that failure to stretch this shoulder on a regular basis could result in the loss of my ability to dress myself. Photograph by John Harris
Photograph taken March 13, 2016 showing permanent damage to my right shoulder. Had my residence been renovated appropriately to accommodate my mobility disability, I would not have experienced 21 years of pain and lack of use. Alicia J. Spence, my physical therapist at Phoenix Rehab, State College, PA says that failure to stretch this shoulder on a regular basis could result in the loss of my ability to dress myself. Photograph by John Harris

The Focus is on experience-based design

I devote considerable space in this post on the consequences of falling the importance of its prevention. Yet, the focus here is on who should be instructing the architect et al. In my case, the unexpected and overwhelming catastrophe that resulted in my becoming a paraplegic made me incapable of dealing with an architect, general contractor, or other specialist. Ideally, since I would have benefited, my inability to act on my behalf was unfortunate. My daughters were too young. My wife understandably was overwhelmed. At question was not merely guard rails in the shower, for example. At question was whether I would be able to work to pay the mortgage, to hold on to the house, to support our children. Catastrophe it certainly was.

Twenty-one years later, I look back at the situation and realize that there were indeed caregivers willing to help if only we knew how to ask. Caregivers are in the difficult situation of trying to understand how to offer help. Families are similarly in the difficult situation of knowing how to accept help. The PHRC report I am co-authoring will  provide advice to caregivers and families.  Fortunately the report will benefit from my experience when one caregiver did emerge who was instrumental in my getting beyond the role of victim.

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Addendum

On December 12, 2006, I described the experience of dislocating my shoulder for WPSU radio.

Toe_hold_WPSU

Go here to listen: http://legacy.wpsu.org/radio/single_entry/LL-1756/

Or, read the transcript

Toe-Hold on Penn State

For most of my life, my toes worked perfectly well. Then, around the age of 48, they gave up their natural function. I went from “occasional jogger” to someone who could not walk across a room. Eventually, my doctors figured out why. I had been treated for cancer, and the radiation had destroyed nerves in my spine.

On a winter day in 1995, fueled by enthusiasm for a brilliant biography of Martin Luther King, Jr.,  I just HAD to read a passage to my wife.  I dashed from the bedroom toward the kitchen—forgetting that my dashing days were over. My toes curled under my right foot and I fell and rolled, dislocating my shoulder. The pain was rapid and intense.

That was at my house at Durham, North Carolina. Now, some 12 years later, I am at Penn State as a graduate student in Rehabilitation Counseling. In the interim, I have come to preach the gospel of assistive technology. This is technology that would have prevented me from dislocating my shoulder.

Here in the graduate dormitories on the western frontier of the Penn State campus, I  can drive my scooter out of my apartment and through the front doors of the apartment complex (which have an electric key providing both access and security). I can cross the bridge over Atherton, a busy street, go to the library and then to the grocery store on Allen Street where I fill my book bag with groceries. I can do all this, and I can go 25 miles before I have to recharge my scooter.

Since my disability began, I have never had this kind of accessibility that Penn State makes possible. Twelve years ago, if I had had equivalent access for an environment with dangerous roads and few sidewalks; namely, if I had

  • a scooter
  • a ramp for my house
  • a wheel chair lift for my car

maybe I would have been able to work productively. Instead, my energy levels and my jobs seemed to fizzle out at the same time.

In the 12 years since my disability began, the three following positive factors have combined to increase opportunity and dignity for the physically disabled:

  • Greater availability of assistive technology
  • Improved environmental design
  • More effective enforcement and compliance with the Americans with Disability Act (ADA), which, among other things [i.e. The Rehabilitation Act of 1973]  provides the standards for the ramps, street cuts, and sidewalks I use when I scoot around Penn State

When I receive my degree, I am scheduled to work as a counselor for the Office of Vocational Rehabilitation (OVR). At OVR, I will be finding jobs for the mobility, visual, and hearing disabled and for those with other disabilities. For technology to be effective, its use must be combined with the proper environment.

My job training as an OVR counselor begins here at Penn State. A high priority for me is to help the Office of Physical Plant make Penn State’s travel routes for wheelchairs, powerchairs, and scooters safer and easier to use. Just because access at Penn State is good does not mean that it is good enough. Unfortunately, I can cite too many instances where sidewalks end without warning (with a sharp drop for stairs), where there is an absence of helpful signs at entranceways, where street cuts are impassable because the cement is so high or so badly poured.

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References used in this post

1.

December motto plus optional isolation

Dr. Jeniffer Simon, a caring and experienced urologist at Geisinger Medical Center in State College PA showed me on her computer this image of a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York, telling me, "Unless you have surgery quickly, you will be dead in 10 years." The date April 5, 2013, 4 P.M.

CanceroustumorsurroundingrightkidneyDr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

  1. Motto
  2. Paraplegia and the recollection of previous cancers
  3. The last part of cancer therapy
  4. Optional isolation
  5. Joanna’s wedding
  6. This I believe

Motto

Make haste slowly is the motto.

Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: "Make haste slowly."
Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: “Make haste slowly.”

I first came across this seemingly contradictory expression when trying to learn Latin: Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

This is my first "step" in getting to New York.
My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

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In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version of The Canary Murder Case
Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia 

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School  in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan
Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College's Phoenix Rehab begins; it is time for me to return to her.
The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of  affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.
Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia was my caregiver at the American Cancer Society's Hope Lodge in NYC where we roomed together before, during, and after my surgery.
Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

  • Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

sarahatwedding

  • Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
  • Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
  • My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

[To be inserted here observations about suicide attempts by survivors. This issue I discuss in my book Learning to Live Again, My Triumph over Cancer available on this site https://joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/].

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

  1. I am alive for a purpose.
  2. The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way, gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road;  the automobile provides the driver computer-voice simulated operated instructions.

Thank you Wired Magazine: http://www.wired.com/autopia/2009/07/blind-driver-challenge/
Thank you Wired Magazine

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia's college graduation.
Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes. 

VirtualRollinshower

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

SloanBath

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.
Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

To be continued.

Meanwhile, here is Edward R. Murrow  interviewing then former President of the United States Harry S Truman on what Truman believes. http://thisibelieve.org/essay/17058/

President Truman is followed by a bad video of an Alan Jackson song. I like the theme. I like the song.

–Joel Solkoff

Copyright 2013 by Joel Solkoff. All rights reserved.

 

Saving Medicare billions: Trying too hard can get in the way

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.

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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.
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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.

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.

Marilyn Tavenner Confirmation Watch June 19th Update: Who cares if anyone runs Medicare?

Senator Max Baucus, Chairman of the Senate Finance Committee, who helped write the original Medicare legislation that President Johnson signed into law.

June 19, 2012 update on Marilyn Tavenner’s confirmation (don’t hold your breath) hearings:

“So what did Sen. Max Baucus (D-Mont.) say when HHS Secretary Kathleen Sebelius asked him to hold a confirmation hearing for Marilyn Tavenner, acting administrator of CMS?

“’It’s going to be difficult to proceed with the Republican opposition,’ said Baucus, chairman of the powerful Finance Committee, when I asked him about the conversation.'”

http://www.modernhealthcare.com/article/20120618/BLOGS04/306189981/max-baucus-fire-non-starter:

You call the enthusiastic endorsement of Tavenner by Rep.Eric Cantor, House Republican Majority Leader,  “Republican opposition.” Give me a break Senator Baucus.

Senator Max Baucus, Chairman of the Senate Finance Committee, who helped write the original Medicare legislation that President Johnson signed into law.

Here is what I told Katrina vanden Heuvel , the editor and publisher of the Nation Magazine [who appeared this Sunday as a refreshingly articulate advocate for abandoning the current foolish policy of austerity above all else on This Week with George Stephanopoulos ] when she asked me to give my younger daughter a gift subscription as a college graduation present:

“Katrina:

“I am shocked by The Nation’s failure to report on the deterioration of the current Medicare system which as a recipient and a left-of-center Democrat, I can report on what is actually going on (despite the Nation’s unexamined rhetoric). Indeed, I have suggested that I write about it for you to no avail. Hence, no subscription for my daughter Amelia: https://joelsolkoff.com/blueroof-reality/countdown-to-amelias-graduation/”

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In response to the report from the Wall Street Journal below:
11:52 pm May 21, 2012
Joel Solkoff wrote :

The failure of Max Baucus and the 12 Democratic members of the Senate Finance Committee, many of whom are liberals whose rhetoric on saving Medicare is voluminous, to hold hearings on Marilyn Tavenner to be head of Medicare and Medicaid is a disgrace. As a paraplegic who has experienced the deterioration of Medicare as it currently exists under President Obama, the fact that his Administration has not had a confirmed Administrator reveals the sharp disparity between a President who lauds Medicare while cutting its budget by half a trillion dollars as part of the cynical price paid to ensure passage of Obamacare. Eric Cantor’s support of Tavenner would have forced Senate Republicans to think twice about voting against her. As one who enthusiastically supported the President four years ago, my unenthusiastic vote for his re-election is indicative of the lukewarm support that could cost him the election. The Nation, The Progressive, and other presumed defenders of Medicare have failed to be critical of the President’s penny-wise, pound foolish administration of a program which he is currently destroying while speaking eloquently about preserving its future. A genuine confirmation hearing for an Administrator whose budget is larger than the Pentagon’s is long overdue. Failure to hold hearings undermines the Democratic pretense that Medicare is worth saving and makes me ashamed to admit that I am a Democrat. What happened to the party of Adlai Stevenson and Eleanor Roosevelt? The best way for Obama to prove his credibility is to push for the support of his nominee and to indicate his commitment to what used to be Democratic values.

http://blogs.wsj.com/washwire/2012/05/21/no-confirmation-hearing-planned-for-marilyn-tavenner/

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Every day I:

1. Log onto the Senate Finance Committee website. http://finance.senate.gov/

2. Click http://finance.senate.gov/nominations/

3. Then, scroll down to here:

12/01/11

Marilyn B. Tavenner, of Virginia, to be Administrator of the Centers for Medicare and Medicaid Services, vice Donald M. Berwick, resigned

4.   Click

  Check Status

5.  Watch paint dry as I go to this site http://www.thomas.gov/cgi-bin/thomas which reads:

Presidential Nominations
112th Congress (2011 – 2012)
PN1165-112

 

Nomination: PN1165-112
Date Received: December 01, 2011 (112th Congress)
Nominee: Marilyn B. Tavenner, of Virginia, to be Administrator of the Centers for Medicare and Medicaid Services, vice Donald M. Berwick, resigned.
Referred to: Senate Finance

Legislative Actions
Floor Action: December 01, 2011 – Received in the Senate and referred to the Committee on Finance.

Organization: Department of Health and Human Services

Control Number: 112PN0116500

__________________________________________________________

Now for some background information. In December, I published the following article in HME News, the publication for the home medical equipment industry which may help you understand the circumstances behind the nomination of Marilyn Tavenner to head the half trillion-dollar agency which significantly affects the life and health of all Medicare and Medicaid recipients.

Who is in charge of Medicare?

The wide-ranging debate over Medicare, a major factor in the presidential election next year, primarily focuses on whether future generations will benefit in the same way that the current 46 million recipients like me benefit. Politicians, critics and would-be-recipients express the illusion that the health care I receive from Medicare represents the ideal. I believe that the only way to save Medicare is to dramatically improve the way it is run today so that it remains a program worth saving.
The primary audience for this commentary is the men and women who provide DME other equipment necessary to sustain and maintain the quality of life. Recently, 87-year-old Lilian Hutchinson, who gets around on an unstable walker, fell and broke her elbow in an independent living facility for 90 elderly and disabled residents where I live in State College, Pa. I believe that if Lillian had access to a scooter or a power chair in her apartment, she would not have fallen. The tales of needless suffering you could tell resulting from a Medicare bureaucracy that increasingly limits access to mobility equipment and medical oxygen seem beside the point.
Durable medical equipment represents only a small fraction of the Medicare budget. The whole system for providing medical care for the elderly, disabled and poor is not working efficiently in large part because of the absence of leadership at CMS, an agency of the U.S. Department of Health and Human Services. My intention here is to answer the question: Who runs Medicare? In theory, Dr. Donald Berwick, a distinguished Harvard physician with an outstanding reputation as an advocate for efficient health care, runs CMS.
Last year, President Obama named Dr. Berwick to be administrator of CMS, a position one senator described as the nation’s health czar since the job also includes putting in place much of the legislation passed last year, which, by one estimate, will extend health care to 32 million Americans who do not have coverage.
Sadly, the president had failed to appoint an administrator early on in his administration, when Senate confirmation would not have been a problem and when an adviser with the expertise and gravitas Dr. Berwick has in the medical community would have proven useful. The major flaw in the president’s landmark legislation was how he intended to pay for it. He decided against raising taxes, which might have doomed passage.
Instead, half the estimated trillion dollars required to extend healthcare coverage was targeted to come from savings to the Medicare budget as a result of achieving cost savings, reducing fraud and abuse, and increasing efficiency. Anyone who has ever made a New Year’s resolution to save money can tell you it is imprudent to spend it before the money is actually saved.
By the time Dr. Berwick arrived at Medicare, he was in the impossible situation of being required to save $500 billion, a requirement for which he had not been consulted and in a situation where the president had given him neither the time nor the authority to implement.
The political comedian Mark Russell observed, in a similar context, that exercising leadership without the necessary authority is equivalent to sending a eunuch to an orgy. Fearful of Republican reaction to Dr. Berwick’s appointment and unsure of the allegiance of Democrats on the Senate Finance Committee, the president refused to fight for Berwick’s confirmation or to find a replacement who would achieve bipartisan support.
Using the recess appointment mechanism, which allows a president to appoint an official on a temporary basis while Congress is not in session, Berwick currently serves as acting administrator and will be replaced next year by his deputy Marilyn Tavenner. Tavenner, while respected for her organizational skill, her background as a nurse and a hospital and state health care administer, does not have the stature required to lead what is in effect a cabinet level position.
Although CMS has a larger annual budget than the Pentagon, as I write this, there has not been a confirmed head of Medicare since 2006. For the purposes of comparison, if the Defense Department did not have a confirmed secretary for five years, there would be a national outcry.
–Joel Solkoff was a political appointee in the Carter Administration, serving as special assistant to the Under Secretary of Labor. He believes a bipartisan solution to the problems of Medicare is achievable.

On February 3, I sent the following letter to Senator Max Baucus (D Montana), chairman of the Senate Finance Committee which has oversight over Medicare and has the power to conduct confirmation hearings on President Obama’s nominee to run Meadicare:

The Honorable Max Baucus

Chairman

Committee on Finance

United States Senate

219 Dirksen Senate Office Building

Washington, D.C. 20510

Dear Senator Baucus

I am writing to request an invitation to testify at the confirmation hearing of Marilyn Tavenner to be Administrator of the Centers for Medicare and Medicaid Services.

I am a paraplegic who is a Medicare recipient. While I am generally supportive of Acting Administrator Tavenner’s appointment, especially since it has been so long that CMS has had a confirmed Administrator; I have considerable concerns about durable medical equipment. As a user of mobility devices and as one who has researched other equipment in the durable category, especially medical oxygen, I think it important that my concerns be discussed.

Specifically, I am concerned about the cumbersome procedures involved in obtaining medical equipment. The current competitive bidding program, the absence of assurances that award winners will provide batteries, other necessary equipment, and maintenance are among the issues on which I would like assurance—both from Acting Administrator Tavenner and from the Senate Finance Committee with its oversight responsibilities.

I realize that no hearings have been scheduled as of this writing. However, given the importance of Medicare and Medicaid I would appreciate my voice being heard, especially on the subject of indigent disabled individuals who have suffered most from current and proposed CMS practices.

I write frequently on disability issues for Voices of Central Pennsylvania, HME News, the monthly publication of the home medical care industry, and for a variety of other publications. I am the author of three books including Learning to Live Again My Triumph over Cancer. My disability writing can be accessed easily by keyboarding my name into Google.

Thank you.

Sincerely,

Joel Solkoff

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Of course I cannot testify unless there are hearings.

For a number of reasons, it seems likely that Marilyn Tavenner is not a controversial nominee and the committee and the Senate would vote to confirm her.

It is hard to run something when you do not have the necessary authority.

Politicians are using this election season to talk about the important of Medicare and Medicaid. If they really believe what they say they would hold confirmation hearings.

There has not been a confirmed had of Medicare since the Bush Administration. 

 

 

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