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.
[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.
“Individuals with Disabilities Remain One of Our Nation’s Greatest Untapped Resources”
A shot from the revolver of the Rhode Island policeman went off by mistake. The bullet hit Jim Langevin, a 16-year-old boy, who was a police cadet in a Boy Scout Explorer Program. It hit Langevin’s spine and kept going. The damage made him a quadriplegic (paralysis of both arms and both legs).
Rep. Langevin is the first quadriplegic to serve in the U.S. House of Representatives. To enter the House chamber 10 years ago, when he was first elected, the maintenance crew made the chamber wheelchair accessible and removed two fixed seats in the front row so Langevin could maneuver his power chair and effectively address his fellow colleagues. Langevin has made his reputation in Congress as an expert in terrorism, computer security, and biological warfare.
This column comes to you at an awkward time. This column will appear in early December, before the seasonal gloom causes you to cheer up others with presents. This December/January issue of Voices stays on the stands until Jan. 31, by which time you will have already broken the New Year’s resolutions you have not made yet.
More to the point, for those of us who care more about politics than football, December marks the end of the lame duck Congress, controlled in the House by the Democrats and is succeeded in January by a new 112th Congress with a large majority of Republicans (63) new members) and not enough Democrats in the Senate to break a filibuster, but enough to sustain a presidential veto.
In short, the next two years promises to be a period when NOTHING will get done. Since Congress controls spending, it is possible that legislation that was dear to the president’s heart will find itself without the money to implement. For those of you so inclined, Gloom is a gift that will not go out of style, especially between now, February first, and beyond.
This column focuses on the problems and opportunities of the elderly and disabled here in Centre County. I chose to interview and profile Langevin because of a letter he signed at the end of the summer, just as the vacuous senate race in Pennsylvania was beginning to heat up. The other signer was Glenn Thompson who represents us here in State College. Langevin is a liberal Democratic; Thompson a conservative Republican. Langevin voted for Obama’s health care reform bill; Thompson voted against it. Why are these two unlikely representatives working for the same cause?
The cause is the fight to keep local medical suppliers in business. This is a cause that affects me personally because without a battery-operated wheelchair I would not be able to go from my bed to the bathroom, or to the kitchen to make dinner, or outside to work and make a life for myself. Previous attempts to reduce costs by giving large corporations, some outside the Commonwealth, contracts to provide wheel chairs, scooters, power chairs and oxygen, have resulted in companies with unsavory reputations receiving the lowest bid and raising the likelihood that poor and middle class individuals who are unable to walk face long waits for equipment delivery, maintenance and repairs. The consequence of these waits are likely to be accidents of the kind that would force independent people with disabilities to move to assistive living resulting in cost increases many times greater than Obama’s penny pitching savings on medical equipment.
Langevin and Thompson agree to end competitive bidding and (the subject of the end-of-summer letter) to halt Medicare’s requirement that customers be given the option of renting their chairs for a 13 months, rather than buying them—through Medicare–in the first month. Power chairs are custom designed to the needs of individual patients, and forcing medical suppliers to pay for them in advance will badly damage a business that is already strapped for cash.
Langevin’s exclusive written interview of over 1,700 words is available on my blog at voicesweb.org. Thompson and Sen. Robert Casey, Jr. have expressed the desire to give you their points of view. Stay tuned.
The big issue, of course, is money. Does our country have enough money to invest in the talent of those of us who are disabled and elderly? Langevin maintains, “Individuals with disabilities remain one of our nation’s greatest untapped resources, and they continue to face challenges in accessing employment, transportation, housing and even health care.”
–Joel Solkoff, author of The Politics of Food. Contact him at [email protected] or at voicesweb.org.
From Where I Sit: My column in Voices of Central Pennsylvania, October 2010
“Trouble, trouble, I have had trouble all my days. / It seems like trouble going to follow me to my grave,” sang the great blues artist Bessie Smith. An African-American, Smith’s skin color put her in her grave, according to the authoritative American National Biography: “On 26 September 1937, with Richard Morgan at the wheel, her car collided with a truck, parked without lights on the roadside at Coahoma, Mississippi, just south of Memphis. Because of her skin color, she was refused admission in nearby hospitals and therefore had to be taken to an African-American hospital in Clarksdale, Mississippi—over200 miles from the accident site. Never regaining consciousness, she died eight and a half hours after the time of the accident due to internal injuries and loss of blood.”
I am in the Corner Room having breakfast and staring at two photographs. The first is Elliott Erwitt’s 1950 photograph of a black man drinking from a segregated water fountain. Above his head is the sign “Colored.” To the left is another water fountain with the sign “White.” The white water fountain is refrigerated. The colored one is not.
When the photograph was taken, it was illegal for the black man to drink from the white fountain. If he had tried and been caught, the police would have arrested him and taken him to jail; he would have been tried, sentenced and imprisoned. In the segregated South, black men “who did not know their place” were lynched for less.
The second photograph is of the entrance to Ye Olde College Diner just up the street. Clearly, no human being in a wheel chair can enter even though we are celebrating this year the twentieth anniversary of the signing of the Americans with Disability Act (ADA) when the president said, “Let the shameful wall of exclusion finally come tumbling down.” At the College Diner, across the street from Penn State, the shameful wall of exclusion remains.
Why this form of State College segregation remains is the subject of this column. I compare the State College Diner to my experiences during the Civil Rights Movement in the South where, in 1962, at the age of 14, I participated with two black ministers in a restaurant sit in at a bus terminal in Athens, Georgia. At the time I lived in Atlanta, where blacks and whites could not eat together in the same restaurant, sleep in the same hotel, go to the same bathrooms, attend the same schools, swim in the same pools, or marry each other. Integrated protestors were arrested for praying in white churches.
That year I attended the Ebenezer Baptist Church and watched Dr. Martin Luther King, Jr. preach a sermon on the spiritual effects of injustice which apply to the owners and patrons of State College’s Diner. The following year I heard Dr. King at the March on Washington say, “We can never be satisfied as long as our children are stripped of their self-hood and robbed of their dignity by signs stating: ‘For Whites Only.’”
Laws are not the solutions to all our problems. The loophole in the ADA that permits the Diner to be inaccessible to the disabled relates to buildings constructed before the ADA went into effect. The law could be changed. But does it need to be changed? If the patrons of the restaurant realized the assault on the dignity of human beings who happen to be unable to walk, the loss of business would force the owners to construct what could be a relatively inexpensive ramp.
If the cost to the business endangers its survival, the community can contribute to the ramp. There could be bake sales at religious institutions. Grant proposals could be written. What is intolerable is the on-going assault to the dignity of those of us who are unable to walk, see, or hear—the assault perpetuated and tolerated by those of you able bodied people who do not realize segregation exists here and now.
Do we really need more laws to protect the disabled and elderly against the numerous daily forms of segregation you impose upon us? Didn’t God give you immortal souls and the injunction to do unto others as you would have others do unto you?
Post Script: This election season has been disappointing. It is useful to remember that if we treat each other as human beings we can avoid expensive and unnecessary legislation.
Nevertheless, we must prepare for the next election. A new organization, Disabled and Elderly Informed Voters for Equal Rights (DELIVER), will endorse candidates and support legislation. Voices of Central Pennsylvania and its columnists are not permitted to endorse candidates or legislation due to its nonprofit status.
Meanwhile, this column at Voices of Centrral Pennsylvania provides detailed information on disability and elderly issues not available elsewhere. Medical suppliers, rehabilitation counselors, and others must advertise in Voices. As Benjamin Franklin said, “We must all hang together or we will all hang separately.”