An Introduction to the United Web of Life (UWoL)
“People are lonely because they build walls instead of bridges.” — Joseph Fort Newton
Vipin Kalia, MD
20 October 2009
Executive Summary
This paper examines a viable and ambitious program—the United Web of Life—to protect the dignity of human existence in its far point of vulnerability. The disabled, elderly, and chronically sick often find themselves in abject loneliness, with no one acknowledging their wretched state. Even if they are covered in maggots, no system exists to ensure their survival or dignity.
Modeled after Social Security, UWoL provides a means by which everyone can invest some volunteer time while young and healthy, assisting those of less fortune and ensuring their own support when or if they fall to a similar state of neediness. No one wants to think about such things, preferring the pipe dream that some organization out there will magically send representative to their doorstep when they fall chronically sick. The fact is that no such service exists.
The author suggests that a phone system inspired by the familiar “911” could be used to connect those who want to help with those who have a need. This “912” network could be set up at little cost, and itself save a huge amount of money. Perhaps human misery is a “conserved” quantity, which is to say that it can be neither created nor destroyed, but simply moved from one place to another. At least its cost is conserved. If an individual cannot pay for his or her own health costs, someone else eventually will. UWoL has the potential to prevent the suffering from arising or growing worse.
To collaborate with the author on development of UWoL, please contact Vipin Kalia at (317) 414-4439, kalia_vipin@hotmail.com.
Vipin Kalia, MD, has a BA in chemistry from Purdue University and studied medicine at Indiana University School of Medicine. He did his post-graduate training in internal medicine at Indiana University Medical Center at Indianapolis. He is assistant professor of medicine at Indiana University and general internist at the VA Hospital in Indianapolis.
Introduction
Vulnerable populations may be defined as people with disabilities, the elderly, or the chronically sick. The cost of acute medical care, with or without insurance, can be very expensive. Even more expensive is the cost of chronic medical care necessary for an self-sufficient and comfortable life. Chronic institutional care is yet more costly. We need an organization to assist vulnerable people in our society, which any of us can become, to live high-quality, independent lives.
United Web of Life (UWoL) is a concept designed to improve people’s health and quality of life by providing an electronic platform similar to eBay to match volunteers with vulnerable people needing help to manage independent lives.
Mission
UWoL will provide volunteer help to vulnerable populations.
Brokerage Concept
In a brokerage model, buyers and sellers are matched. Companies like eBay electronically match buyers and sellers around the world. Likewise, as a social brokerage, UWoL will provide an electronic, telephonic, and paper-formatted platform for volunteers who want to help vulnerable people.
Who Is Vulnerable?
The vulnerable population is defined as anybody who is elderly, disabled, or chronically sick. When people reach these stages of vulnerability, it is quite difficult for them to maintain their activities of daily living (ADL). Once these ADLs cannot be maintained, independent living becomes quite difficult and challenging. The aim of UWoL will be to lessen the burden on the small circle of people who are sharing the challenges of and supporting vulnerable people by keeping the latter group independent and assisting them with their ADL.
Need for Recreation of Institutional Support
Throughout history, vulnerable populations have relied on family, friends, neighbors, and religious institutions to take on the role of caregiver to fulfill their basic needs. With the onset of industrialization around 1700 AD, urban settings began developing, and people became mobile and began moving around the world. As industrialization accelerated, strains grew on traditional social structures of family units, extended family units, circles of friends, and religious institutions. Notwithstanding industrialization, vulnerability to chronic sickness, old age, and disabilities did not go away, nor are they likely to during our lifetime, despite promises of hundreds of billions of dollars worth of research in medical science.
Traditional social institutions that once provided support to vulnerable populations have largely disintegrated. In large urban settings, newer institutions have tried to take the place of supporting social structures. However, the newly reconstituted units in modern urban environments have not been able to completely fulfill the roles played by the old institutions. The new institutions that have sprung up include hospitals, nursing homes, and multiple charitable organizations that provide some measure of help to the elderly, disabled, and chronically sick.
All the while, limited help continues to be provided by the old social structures. However, a large percentage of the population (the exact percentage is hard to define) has difficulty in accessing these resources. When there is no support, the doctor’s office or the hospital emergency room is the only resource left. Doctors’ offices and hospitals are, for many of us, very expensive and are the least productive and useful in fulfilling the gaps left behind by prior social institutions. Furthermore, they are principally useful for addressing acute health concerns. In chronic disease, at the point of crucial vulnerability, when no good options are available for leading independent, good-quality lives, only two options remain. Both are suboptimal. One is remaining neglected in one’s own home. The other is nursing home care (which, in fairness, may be the best option for some cases). Remaining neglected in one’s own home is not a theoretical option, but one that thousands of Hoosiers are experiencing in central Indiana. Scores of these neglected fellow citizens present to emergency rooms of all hospitals in central Indiana in varying stages of neglect and abandonment. Often, these poor souls end up in nursing homes, not because they want to, but because they have run out of alternatives.
In the past, the author tried to create an ad hoc organization whenever a vulnerable person required hospitalization. He found this to be neither practical nor fruitful. This is similar to driving from point A to B, with no existing road between A and B, and hoping the road will be built as you are driving! This approach does not lead to useful driving or useful building of roads. Therefore, the pool of preindustrialization resources once available to vulnerable people needs to be recreated, also making use of the best of present infrastructure, modern industrialization, and information technology.
Before we address the scope of UWoL in assisting vulnerable populations, let us review the scope of disease and health issues that will have to be addressed.
Prevalence of Disease in US and 20 Counties of Indiana
The most common and serious diseases are listed in the first column of the table below, including the first nine categories that are heavily interrelated.
US Statistics: The current population of the US (as of Apr 21, 2007) is 301,666,900. Disease is seen in nearly 377,826,000 people, as a result of individuals having more than one disease (second column of the table) and being double or triple counted.
20 Counties of Indiana: For the population of 2,152,539, living in a 70-mile radius of Indianapolis (comprising 20 counties), the incidence of said diseases has been extrapolated from the US figures. The diseased population is 2,695,969 (third column of the table).
Disease | Total Diseased Population in US | Total Extrapolated Diseased Population in 20 Counties of Indiana |
obesity ¯ | 283,992 | |
hypertension ¯ | 356,774 | |
hyperlipidemia ¯ | 356,774 | |
diabetes ¯ | 73,495 | |
coronary artery disease ¯ | 91,334 | |
cerebrovascular accident (strokes) ¯ | 357 | |
congestive heart failure | 34,250 | |
The above sequence illustrates how one disease can lead to another, escalating human misery and health care costs. | ||
Similarly, common maladies such as those below can themselves lead to even worse health problems that precipitate into disabilities and vulnerabilities. | ||
alcoholism | 107,746 | |
Alzheimer’s disease | 35,677 | |
amputation | 13,557 | |
arthritis | 328,232 | |
asthma | 121,303 | |
cancer (all types) | 72,397 | |
chronic obstructive pulmonary disease | 96,329 | |
cystic fibrosis | 214 | |
depression | 121,303 | |
drug abuse | 139,142 | |
hepatitis (types b & c) | 46,381 | |
HIV & AIDS | 6422 | |
peripheral arterial disease | 85,626 | |
schizophrenia | 15,698 | |
total | 334,526,000 | 2,695,969 |
Explanation of Numbers
So-called “walking–talking” diseases, such as hypertension and hyperlipidemia, have no symptoms. However, they are harbingers of complications such as coronary artier disease, congestive heart failure, and cerebrovascular accidents (i.e., strokes) to follow. Once the complications of walking–talking diseases present, so do the vulnerabilities. Who will help you and assist in your daily activities during the worst phase of your life, when you cannot handle things on your own? This question needs to asked when you are in the walking–talking disease phase, before vulnerabilities set in. The good thing about these illnesses is that they give years or decades of planning time for future disabilities. What’s bad is that they leave very little impression on the human brain, very little sense of urgency. How many people will heed the warning and join UWoL to prepare for the future? No one knows the answer.
Establishment of an Acceptable Infrastructure for UWoL
How do we set up such an infrastructure that will be universally accessible and available? We started by looking for models that have already been tried and that worked in our society. Franklin Delano Roosevelt (FDR), was the president of the United States during the 1930s. FDR’s administration struggled with this particular problem and found some useful solutions that provided a very good working model. The administration was faced with a particularly difficult economic and social challenge, especially after the Great Depression of 1929. At that time, it was not uncommon for people to be either begging at every major intersection or standing in soup lines hoping for food and other help. Especially difficult to stomach were the elderly, disabled, and chronically sick people who were economically displaced. FDR’s administration came up with a brilliant idea called the Social Security Administration (SSA).
The SSA has provided a wonderful safety net to people that helps them economically during their stage of vulnerability or retirement or both. However, neither FDR’s administration nor any other government had enough resources at its disposal to completely eliminate the socioeconomic upheaval that followed the Great Depression. However, FDR’s team came up with the ingenious solution that all the workers in the country would pay a small amount of payroll taxes, and those payroll taxes would be accumulated; during disability or retirement, workers would get that money back in monthly installments. The nice thing about Social Security checks is that almost everybody can afford some minimal housing and food. However, it was never intended nor is it enough to totally meet the needs of old age, chronic sickness, and disabilities. Payments are usually from $700 to $1800 a month, barely enough to cover living and food expenses. Those people who are in the $1800 plus range of Social Security are usually in the upper economic level. They are not the ones who UWoL needs or intends to assist. For those people in the lower 50% end of vulnerability, the challenge is horrendous and can be seen on a daily basis in our hospital emergency rooms.
Another common side effect of this fixed income from Social Security is that both spouses’ living expenses are tied to it. If one spouse’s disability money goes to a nursing home, the other spouse is left largely destitute (particularly if the disabled spouse also happens to be the main earner of Social Security). For this reason, people keep their disabled, chronically sick, and elderly family members at home. The challenges of providing round-the-clock care to them are monumental. Of course, this is a purely economical analysis. The psychological and social benefits of being in your own home and familiar environment is tremendous. Beyond pure economics, there are social and psychological reasons why people prefer to stay at home.
Social Security and Medicare also keep social, psychological, medical, economic, and dependence problems largely invisible to the general population. With Social Security, panhandling and begging have now gone from the streets into homes. Once such people are in their own homes, the problems they face are no longer visible to society. Most of us go about our day-to-day work and life pretending they do not exist.
However, when you are a health care provider or a doctor, in an office or a hospital, these problems are very live and evident and are tackled on a daily basis without any underlying infrastructure. As beneficial as FDR’s SSA and Medicare have been, they have taken the limelight away from these problems and hidden them in small little boxes called houses. The only people who know about them are the people who suffer in their homes, their caregivers, health care providers, and the doctors’ offices and hospitals where these problems present themselves daily. This is to minimize the role nuclear and extended families, neighbors, friends, and religious institutions continue to play to fill gaps left in caring for the vulnerable population. However, there are still wide chasms left in-between the Social Security safety net. Also, in situations where there is family or other support, it can become overly burdensome for the families to cope with chronic care.
In other situations, where there is no help, independent, good-quality living becomes even more elusive. When people reach these vulnerable stages in life, few good options are available. There are visiting nurses and custodial care agencies that cost $20–75 per hour. This kind of cost is either not covered by insurance or covered for very limited time. Annual costs can range from $75–250k, based on the skill level of the personnel providing the care and the number of hours the care is required. However, given the median income in Indiana, 90–98% of the population cannot afford to self-pay for this care. Once one is trapped in these vulnerable circumstances, few good options are available. Another unfortunate aspect of this vulnerability is the unpredictable nature of its timing. Disabilities and chronic illnesses often present unpredictably, adding to the uncertainty.
FDR’s administration provided a wonderful model to look for better solutions. What is truly remarkable about this model is that everybody universally participates in this program from the moment he or she reaches adulthood and joins the work force. No matter how much money you earn, whether it is very little or a lot, you still get to participate by paying payroll taxes, and your employer matches them. The money is accumulated in a Social Security fund that is returned to you during your states of vulnerability. For those states of vulnerability for which no present institutions have a comprehensive solution, UWoL hopes to find one as comprehensive and far reaching as the SSA was in the 1930s.
UWoL Concept
UWoL is not a government organization and does not have a government mandate. Therefore no resource of the government or laws can be brought to bear to force people to participate in UWoL. It is a volunteer organization. When you are a young, healthy, working-age individual, you participate in this program by contributing 2–20 hours a month of your volunteer time to help out somebody in your own neighborhood during their states of vulnerability. The organization would keep track of how many hours you contributed, as a cumulative tally. If you reach a state of vulnerability and other existing social organizations are not able to fulfill your needs of ADL to sustain independent living, UWoL returns those hours you have accumulated. These hours would be similar to the dollars you accumulate in Social Security.
A common question about UWoL (see more frequently asked questions at the end of this paper) is how people who are vulnerable today can suddenly start getting this help for free. They have not contributed anything to UWoL, so will they get any help? The answer is very similar to the SSA’s. The first check issued by the SSA was to elderly persons who had not contributed a dime to the Social Security fund. However, they were given the first check nonetheless. All the future generations that followed the first check actually did contribute to some extent to this and in return were given social security checks for their accumulated dollars. This process has to start somewhere. The fact that today’s vulnerable people have not contributed anything to UWoL is no reason to hold back the formation of this organization or distribution of help to vulnerable people.
Vesting and UWoL
The SSA vests you on a quarterly basis when you pay payroll taxes. These payroll taxes are for a certain amount (10 years or 40 quarters). Only after that do you become eligible for Social Security funds. However, in UWoL, the vesting is a two-fold process. One is the accumulation of your hours of service, and the second is making sure you are helping with the intention of helping only and do not have any deviant intentions.
In the first vesting process with UWoL, we hope to be more liberal than the SSA. The moment you join the organization, you automatically become vested. Should you suddenly become vulnerable through accidental disability, medical disability, or other social or psychological reasons, you automatically qualify for help from other volunteers. The other vesting process ensures that all the volunteers are actually providing help the way it is intended. In the short term, when we are trying to get this organization off the ground, we will have vulnerable people sign liability waiver papers, and volunteers who want to help these vulnerable people will also sign liability waiver forms. If they are mutually acceptable, they can help each other. We will plan on getting liability insurance to cover for the small percentage of people who either accidentally or intentionally cause harm. In the intermediate and long term, the vesting process will be somewhat more complicated.
We have learned a huge lesson from the Catholic priest scandal. The vast majority of priests are decent, honest, God-fearing people who have dedicated their entire lives to the service of God and humanity. However, a small percentage of deviants have tarnished the names of those decent, God-fearing people. The church had placed its entire trust, blindly, in the priest. We realize that the vast majority of volunteers who are going to come and help our vulnerable people are going to be decent, honest, and God-fearing. In the same way, those vulnerable people who are seeking help are going to be decent, honest, and God-fearing, though stuck in this state of vulnerability and hoping for some help. However, a small percentage of vulnerable people and a small percentage of volunteers are likely to have deviant intentions. Therefore, the vesting process in the intermediate and long term will be complicated by monitoring activities of volunteers and vulnerable people needing help. The vesting process will go somewhat similarly to the process described below.
Each of the volunteers and each of the vulnerable people would have been investigated in this program for attributes of diplomacy, people skills, dependability, honesty, integrity, and altruism. Most important, they would have to be free of deviant intentions that could include sexual gratification or material or other secondary gain. Unfortunately, there is no quick test, no thermometer that one can put in someone’s mouth, for measuring his or her intentions with 100% certainty. Therefore the vesting process should last for at least seven years.
Vesting will be done by written feedback from the vulnerable population who we serve at each occurrence. Further, people who are involved in setting up this volunteer organization of UWoL will have to be manually supervised by other volunteers when they are with other vulnerable populations. For the first month, this supervision has to occur on an every-occurrence basis. From the second to the sixth month, this can decrease to 50% of the occurrences. From there:
Months | Percentage of Supervision |
12–24 | 25 |
24–36 | 20 |
36–48 | 15 |
48–60 | 10 |
60–84 | 5 |
However, this manual supervision of volunteers from local supervisory volunteers at an organizational level should never decrease below 5%, to keep on-going quality control. This supervision has to be random, unannounced, and manual—verifiable with a paper trail to be effective and ongoing. Every time a volunteer is serving a vulnerable person, a full paper evaluation is done by the volunteer of the vulnerable person and conversely of the volunteer by the vulnerable person.
The 0-9-1-2 Concept
Any charitable organization providing help to people living their states of vulnerability has to be universally accessible, at all times. A lot of the nonprofit organizations are already providing the kind of help we are tying to recreate. However, their biggest deficit is that they are neither universally recognized nor universally accessible. How does one build an organization that is universally recognized and universally accessible? Again, rather than reinventing the wheel, we should look for organizations and institutions that already exist in our society. The 911 system is an excellent model from which to borrow.
911 is a universal emergency system in our society. A lot of history, organizational effort, institutional effort, intellectual power, and money have gone to create this infrastructure. In the 1940s and 1950s, if you were having chest pain in your own home, you would thumb through the yellow pages and look for an ambulance service. Some ambulance services worked only Monday through Friday. Some of them worked seven days. Some of them worked only certain hours. Some of them worked only certain areas. Therefore, you would be calling multiple people while having chest pains and a heart attack or having difficulty breathing or having an accident on the side of the road. As a result, many people died needlessly. The American Federation of Scientists and many other organizations spearheaded the effort to build a universally accessible organization and infrastructure system that anybody could access from anywhere to have instant police, fire, and medical help. The 911 system has served our society very well. Therefore, we intend to copy the 911 model in UWoL. The 911 number is universally recognizable and already taken, and everyone knows about it. Our long-term goal is a “912” system.
The 912 system would come into play once you are done having your heart attack, stroke, diagnosis of Parkinson’s or Alzheimer's disease disease, or a motor vehicle accident, and you are taken care of for your acute medical needs in a hospital setting and ready to be released back to your home. At this point, when you reach this stage after initial diagnosis and acute care is given, if you have a lot of money or a close-knit family structure, neighbors, friends, or religious institutional communities, those hurdles are no longer a problem. However, in our hospital settings we have come across a fairly large percentage for whom this stage of vulnerability is a complete nightmare. In the steps that follow the delivery of acute care—during the state of vulnerability, which is chronic illness, old age, or disability—huge gaps loom, and they have to be fulfilled by a universally recognizable, universally accessible organization.
In the short term, we would buy in each area code in central Indiana the area code plus the prefix of the telephone number plus 0912 for the last 4 digits. That way, in every community, everybody would know what number to call when looking for help during a state of vulnerability. For example, if you live in the Castleton area in central Indiana (Castleton is in the northeast side of Indianapolis), you would know that your area code is 317, your prefix is 846, and the last four digits are 0912. Many church pastors ask, “How would we be able to get the 0912 number if it has already been taken?” In the short term, our hope is to appeal to people’s goodwill and generosity and beg and plead with them to give us that number so we can build a universally accessible organization. However, once we reach a certain critical mass of volunteers and vulnerable people, legislative remedy can be sought that would include asking for a 3-digit infrastructure, like 911, of 912 numbers so it would be universally accessible.
The organization has to provide multiple ramps to get access. When you are trying to get on the highway, the main city roads have ramps to get to it. In the same way, the 0912 system would provide ready access to the UWoL during your state of vulnerability. It could be listed in the yellow pages and provide local help in your area. UWoL would also have Internet presence, and the hope is that wherever you would be in the world you could access www.UnitedWebofLife.org and sign up and register your state of vulnerability.
By the same token, once a certain amount of publicity and advertising has been done, a critical mass of volunteers who believe in such causes could also list themselves through the Web site. Therefore, UWoL will essentially provide an electronic platform where vulnerable people are matched with volunteers in their own area. Our short-term to intermediate hope is that all religious institutions, regardless of denomination, would join us to form a 1.5 ´ 1.5 mile quadrant around their physical location. If we find a vulnerable person in their quadrant, the institutions would promise to help that vulnerable person regardless of his or her religious affiliation (or lack thereof), just like the three organizations that have already joined us: Methodist Church of Noblesville, Shepherd Center, and Sikh Satsang of Indianapolis.
Our first prayer for assistance with UWoL is to God, of course. The second is to religious leaders: Apply moral pressure on your congregations to get involved in their quadrant, helping vulnerable fellow Hoosiers, regardless of religious denomination. Our third prayer is that the congregations would affiliate themselves with UWoL so it can provide an easy access ramp to their generous help. Of course, our prayer is the same for other NGOs, volunteer organizations, and neighborhood associations to affiliate themselves with UWoL for easy/universal access.
As can be seen from the model of UWoL, a large part of the work is going to be done by volunteers. Just as eBay owns no inventories, but provides networking power to match buyers and sellers, we hope to provide a platform to match volunteers with vulnerable populations. Because a large part of the work is going to be done by volunteers, it does not require a huge start-up budget. We need seed money to physically locate the headquarters and a staff of about ten people: a third of the staff for public relations to get the word out, a third to support computing strategies, and a third for administrative purposes. Of course, every dollar invested in UWoL would have a 1000-fold return in the quality of life for our fellow Hoosiers. On a more practical and economical basis, this should significantly reduce the costs of hospitalizations related to neglect and the need for social admissions. (Social admissions are done in hospitals on a daily basis because no alternative is available, even though there is no acute medical reason for hospitalization.) Similarly, this will help keep vulnerable people independent in their own homes, away from institutionalized care that is largely picked up by federal or state governments through Medicare, Medicaid, V.A. benefits, and so on.
Yearly Budget
three people with computer skills, including Web design, @ $60,000 each | $180,000 |
three PR experts, at $50,000 each | $150,000 |
three administrators @ $40,000 each | $120,000 |
one MBA @ $100,000 | $100,000 |
Subtotal | $550,000 + 30%, benefits and payroll taxes = $715,000 |
umbrella liability + per-incident insurance coverage | $1000 + $280/volunteer (25/50/100 [customary insurance caps, such as personal, group, and property payouts, in thousands] w/ $500 deductible) covering assault & battery andsexual abuse & molestation 200 volunteers would equal ($280 x 200) + $1000 = $57,000 insurance cost |
office space, lease vs purchased | lease: $30,000 for 2000 sq. ft @ $15/annually versus purchase: $10,600/annually for 2000 sq. ft mortgage over 25 years |
utilities | $5000 |
stationery | $500 |
supplies | $500 |
miscellaneous | $10,000 |
advertising | $120,000 |
Total | Leased office and 200 volunteers = $938,000 Mortgaged office and 200 volunteers = $918,600 |
Were a benefactor to provide a major foundational grant to UWoL, perhaps $7–10 million, the program could be funded for the better part of a decade. Social return on investment would be huge. Consider, for example, the lessened burden on the strained hospital systems, in which beds are being used for social admissions simply because no other system exists to accept the destitute when they become ill. Similarly, if nursing homes could be spared the task of caring for people who are presently discarded by society, or even a fraction of them, the staffs could be less overtaxed and provide better care to the remaining tenants. In both cases, direct and indirect cost savings will be immediate and profound.
Sustainability
However, this program would not need funding from a government grant, endowment grant, or philanthropic organization donation forever. It would convert to being self-sustaining by charging an easily affordable 10¢ to 25¢/hr for help received from volunteers to offset administrative costs. Additionally, all recipients and donors of services would be encouraged to buy goods and services from preferred vendors. Those vendors selling goods and services to vulnerable populations and donors of volunteer services would be asked to return 0.1 to 3% of the aggregate purchasing power for the running of the organization. These multiple sources of revenue could make it self-sustaining, with growth potential and expansion beyond central Indiana.
Benefits to Individuals
Though most people in America have no idea, everyone lives disturbingly close to one or more individuals whose vulnerable existence has been aggravated to the extreme. The following story, from a news report from 2004 in Florida captures the essence of this kind of nightmare:
A […] Martin County woman has died after emergency workers tried to remove her from the couch where she had remained for about six years.
Gayle Laverne Grinds, 40, died Wednesday, after a failed six-hour effort to dislodge her from the couch in her home. Workers say the home was filthy, and Grinds was too [disabled] to get up from the couch to even use the bathroom.
Everyone going inside the home had to wear protective gear. The stench was so powerful they had to blast in fresh air.
…officials want to know more about the circumstances inside the home.
Investigators say Grinds lived with a man named Herman Thomas, who says he tried to take care of her the best he could. He has told them he tried repeatedly to get her up, but simply couldn't. No charges have been filed, but officials are looking into negligence issues.
Emergency workers had to remove some sliding glass doors and lift the couch, with Grinds still on it, to a trailer behind a pickup truck. Removing her from the couch would be too painful, since her body was grafted to the fabric. After years of staying put, her skin had literally become one with the sofa and had to be surgically removed.
She died at Martin Memorial Hospital South, still attached to the couch.
Neighbors say they had no idea Grinds lived at the duplex, though they had seen Thomas and some children outside.[22]
Obviously, this is not death with dignity. Some people like this woman present to emergency rooms with maggots in their festered bedsores. Doctors who deal with this get accustomed to the maggots themselves, but cannot so easily steel themselves to the gross inhumanity of the situation. Nor should they. UWoL is a conceivably workable way to prevent this kind of neglect.
Here are a few scenarios seen on a regular basis in hospitals. A patient comes walking and talking into the hospital, and after a few hours or days a cancer is diagnosed. Chemotherapy, radiation, and surgery make independent living and a normal state of mind impossible for quite a few weeks, or possibly months. Death could be imminent or distant. After the acute-phase care, continued hospitalization is no longer economically justifiable. Meaningful home care is prohibitively expensive. Eventually, these patients are forced to fend for themselves in the worst phase of their lives, sometimes in the dying phase.
This drama plays out thousands of times, but the name of the disease can be changed to stroke, Parkinson’s, Alzheimer’s, congestive heart failure, severe disabling arthritis, spinal cord injury, traumatic brain injury, amputation, or peripheral arterial disease. Invariably, they all lead to a sense of being “trapped, helpless, and completely abandoned.” As in the example of the woman bonded to the couch, victims can be in predicaments far more desperate than merely feeling trapped and abandoned. They can be sitting in their own stools and urine for days (or months), developing skin breakdown and maggot-infested open sores. Sheets and stools fuse with the skin. They are brought in to the hospital attached to their bedding.
Whenever a doctor sees psychological, emotional, or physical abandonment, the same question comes to her mind. Where are the family, neighbors, churches, and not-for-profits? Where is our humanity? Where is civility? Indeed, where is God?
In the hunting–gathering days of our ancestors, were you physically disabled and unable to fend for yourself, nature had a plan. You were placed on the lunch menu of some carnivore who quickly put you out of your and its misery. You were connected, in a fierce and uncompromising way, to the web of life. In our present-day, complex urban environments, some percentage of people is completely disconnected from families, neighbors, friends, churches, and other not-for-profit organizations and is disconnected from the web of life, existing in isolation. The moment vulnerability strikes, that isolation comes to the fore and gets magnified. Our hope is for people to be connected in their own environment and their own ZIP codes to their web of life! This new web of life, a bit less savage than that of our ancestors, would hold one’s hours of service in escrow (just as a bank holds one’s money until one needs it or the SSA holds one’s money until old age or disability) until required during a state of vulnerability.
During the most vulnerable phase of life, those who cannot count on family, friends, neighbors, religious institutions, or other not-for-profit organizations would always be able to count on UWoL to provide some consistent cushion of services to live independent, dignified lives (and to some extent demand their hours of service back from UWoL because they would be held in escrow). UWoL would restore hope, dignity, support, and quality of life where none exists to at least some subset of the population.
Benefits to Society
A large percentage of these vulnerable people end up being admitted to acute-care hospitals for preventable complications of benign neglect. These add to the cost of health care for everyone. Eventually, nursing homes become the only viable option, at a tremendous psychological, emotional, and economic cost, a large part of which is borne by Medicaid (state assistance programs), Medicare, and a combination of federal, state, and county tax revenues. There can be a lot of cost savings through prevention of acute-care hospitalizations and unnecessary nursing home admissions.
Everyone benefits if the most unfortunate among us have their ignored vulnerabilities addressed in a timely and humane manner. Additionally, a civilization will be judged by history on the basis of how it treated those in greatest need. UWoL can lift the whole culture to one of caring and compassion. If the US adopted this system, it would reestablish the highest moral ground in the world.
Frequently Asked Questions
Q. I don’t know anyone who needs any help!
A. Fellow Hoosiers in various stages of benign neglect due to old age, disabilities, and chronic illnesses are seeking help from various institutions on a daily basis. However, at this point there are not enough resources to meet the needs of these populations. There is no shortage of legitimately needy vulnerable populations who have reached that stage thru old age, disabilities or chronic illnesses. Such people can be seen in central Indiana health care facilities every day. UWoL can make their needs known.
Q. Why is this organization giving preference to Veterans?
A. Veterans are a special group of Hoosiers whose sacrifices for our country are far beyond imagination. The author has worked in the VA Hospital since 1992 and has first-hand experience with the special challenges these Hoosier veterans face. Their service and sacrifice has made all of our lives freer and better in incalculable ways, and therefore it is fitting to give them preference. However, once this organization is well-organized with adequate resources, we hope to serve all vulnerable fellow Hoosiers.
Q. What if I feel overwhelmed with the needs of a legitimately vulnerable person ?
A. It is perfectly reasonable to feel overwhelmed with some of the sad stories and circumstances of the lives of fellow Hoosiers. However, UWoL will be set up such that no one individual feels responsible for any one vulnerable person. Your goal should be to donate as many hours as you can and let UWoL arrange for more if a need exists.
Q. Why should I worry about other vulnerable people?
A. There is no mandate or law that one should worry about vulnerable people’s needs. However, most of us would feel bad if there was a person bleeding to death and we just drove by without stopping to help. Up until Good Samaritan laws came into existence, it was common for people not to intervene at the site of accidents, where someone could be bleeding to death. It was the collective conscience of enough Good Samaritans that forced legislatures to enact these laws. Now, because of these laws, people routinely stop at accidents to offer or seek assistance for accident victims.
When you see or hear the stories of these vulnerable people, they are no less gut-wrenching. The question is, are there going to be enough Good Samaritans willing to help these vulnerable people or are we going to pass by, pretending not to see their needs? We are civilized people, living in a very civilized society, and that civility demands of us that we not let fellow Hoosiers live in a state of benign neglect.
Q. What is in it for me?
A. First is the joy of bringing cheer to the life of a fellow human being. Second, your hours of service will be tracked and banked in UWoL, and should you ever find yourself in this vulnerable situation (which comes unpredictably), you would know exactly what organization to call.
Q. I am well-off and well-insured, and if I ever reach that vulnerable stage, I will have plenty of help. Besides, I have enough family to help me. Why do I need to get involved with some organization that wants to help vulnerable Hoosiers?
A. We are quite pleased with your blessings and hope they continue for the rest of your life. If you are blessed, this might be the perfect opportunity for you to share your blessings with your fellow Hoosiers. However, a lot of vulnerable people did similar calculations in their minds before they became vulnerable. Due to life’s complexities and unpredictabilities, the best-laid plans don’t always work out. At that time, you need organizations to step in to help. Currently, there is no volunteer network organization universally accessible to provide help for vulnerable people. We are trying to build such an organization; if you are blessed not to need any thing, please join us to build such an organization.
Q. If I join such an organization and some busy, hectic schedule comes in my own life, can I back out during that period?
A. Of-course, you can back out during busy, hectic periods in your own life. We hope to recruit a large number of volunteers, so one person’s busy schedule would not interfere with UWoL’s mission.
Q. I don’t mind helping ethnic group X, but I am not sure I want to get involved with ethnic group Y. Why should I?
A. Your personal preferences will never be challenged. However, human misery is universal in all ethnic, religious, and socioeconomic classes. Diseases, disabilities, and old age do not discriminate based on ethnicity, class, and social status. UWoL’s hope is for service to all, regardless of ethnic or class barriers. However, no volunteer will be forced to associate with someone he or she is not comfortable with.
Q. Aren’t some of the religious institutions already providing such help to vulnerable people?
A. Some religious institutions are already doing a lot of wonderful things, and we encourage them to get organized and collaborate with us so we can build a universally accessible organization. Other religious institutions probably would like to get involved in serving vulnerable fellow Hoosiers but don’t know where to start. Our hope is that we can pool talents and resources to build a universally accessible organization. In such an organization, everyone can participate and enjoy the benefits of UWoL during states of vulnerabilities.
To collaborate with the author on development of UWoL, please contact Vipin Kalia at (317) 414-4439, kalia_vipin@hotmail.com.
Vipin Kalia, MD, has a BA in chemistry from Purdue University and studied medicine at Indiana University School of Medicine. He did his post-graduate training in internal medicine at Indiana University Medical Center at Indianapolis. He is assistant professor of medicine at Indiana University and general internist at the VA Hospital in Indianapolis.
[8] National Women's Health Information Center and National Institute on Alcohol Abuse and Alcoholism
[12] National Institute of Allergy and Infectious Diseases; National Health Interview Survey (NHIS-97); National Women's Health Information Center; National Heart, Lung, and Blood Institute
[13] US National Cancer Institute’s Surveillance Epidemiology and End Results database for the year 2002
[18] National Institute of Allergy and Infectious Diseases & National Women's Health Information Center & Centers for Disease Control and Prevention 2001
