Archive for the ‘AbilityLane’ Category

Managed Care, Discrimination, Poverty, Inequality

Human Resources personnel have the ability to help persons with disabilities into the workplace, and there are certainly disabled people who are willing to work. Unfortunately, there are some hurdles that get in the way, hurdles such as managed care, Medicare, Health Maintenance Organizations, Social Security, and historical and current oppressive mentalities on the part of nondisabled persons. In this part of my paper I approach these subjects, beginning with the fact that persons with disabilities and organizations need each other.

While persons with disabilities and Disability Culture leaders enable each other, so do people and organizations. People and organizations are dependent on each other; organizations need the efforts and talent of people, and people need the rewards that organizations offer. Unfortunately, people and organizations don’t always fit together as well as both sides would like. When they don’t fit each other’s needs, people start feeling neglected and oppressed, while organizations lose because people don’t work as well as they might or even work against the goals of the organization. But if both sides fit together well, people have meaningful work and organizations have the energy and talent they need to succeed at what they are doing. (Bolman, Deal, 1997)

Yet as organizations are building up toward competition on a global scale, as well as quick change and turbulence, many organizations are wondering if they should keep the number of people they employ down, or if they should invest in them. If organizations downsize, outsource, or use temporary workers, they risk losing the loyalty and talent of their workers, and may end up finding that they have become a mediocre organization. On the other side, if they invest in people they may find themselves doing well. Persons with disabilities are valuable workers who can contribute to any organization, and investing in them can be a wise decision for an organization to make.

Human resource workers have the opportunity to enable persons with disabilities by finding work for them that is within their abilities. They have the opportunity to match organizations with people, enabling the organization and the worker with a disability, placing them both in a situation of increased standing. Organizations that find employees through human resource workers can provide job security, good pay, training and promotion from within. In turn, they will receive excellent teamwork, loyalty, dedication, and workers who believe in the shared vision of the organization. For organizations and persons with disabilities to have the opportunity to interact; though, some changes are needed in medical insurance programs. (Bolman, Deal, 1997)

Currently, there are more than 140 million people in America who are on some form of managed care. If someone on managed care has depression, chances are they haven’t received immediate treatment. The delayed treatment they do finally end up receiving is questionable; 20-30% of the time it wasn’t the right level of care, or the length of treatment was not enough to take care of the problem. (Fleischer, Zames, 2001)

Managed care organizations many times work in a way that isn’t consistent with what persons with disabilities need. Persons with disabilities tend to have a lower income, but have greater health care needs than other persons in America. They use health services more often and need more specialty and long-term care services; they also don’t usually fit into “capitation payment structures” created for common patients. Older people and chronically ill poor people are more than twice as likely to experience a decline in health if they belong to a Health Maintenance Organization (HMO) than they would in a fee-for-services plan.

Beginning in Fall of 1998, persons with disabilities and older persons who get health care through Medicare were asked to pick from a variety of new options, such as traditional Medicare, HMO coverage, Medical Savings Accounts (MSA), or other plans. Research done by older citizens and persons who support them found that “beneficiaries with chronic illnesses, requiring many expensive health care services, would be hurt by the MSA program because the money in the MSA would not cover their medical costs under the deductible.” Other health care programs were lumped together under the name Medicare Plus Choice, and are private. Medicare Plus Choice includes different financial incentives to reduce care; and doesn’t serve the needs of persons with disabilities. (Fleischer, Zames, 2001)

Personally, when I was sent the pamphlet that Medicare put out concerning these medical care “options”, I thought it might as well have been sent out in comic book form. As I remember, it was meant to answer all my basic questions. It gave a phone number I could call with questions, but if I was not adequately informed about the options, how was I supposed to come up with any intelligent questions? Traditional Medicare became my health care coverage, because I knew a little bit about it; the information about the other programs could have been printed in hieroglyphics for all I cared. Imagine what such a process must have meant to someone with a cognitive impairment, or an older person who might not be as able to decipher the pamphlet as others. The new system was designed to cut federal spending on Medicare; to save consumers money. When it first began it was on shaky ground while insurance companies figured out whether they wanted to participate, and our government tried to educate 39 million beneficiaries about the complicated choices before them.

Instead of cutting federal spending on healthcare, the different plans increased spending while confusing the heck out of recipients with so many things to understand about the different programs. A further sore on the bottom of Medicare came when in 1998, 400,000 people on Medicare were dropped by HMO’s. Concerns over the changes to Medicare brought on protests by the Grey Panthers, who held up signs which read “No More Medicare Cuts!” Disability activists started raising questions of their own. (Fleischer, Zames, 2001)

One of the things Disability activists began to question was the possibility of a two-tiered health care system in America based on the economic level of the person receiving services. The Kyl Amendment of 1997 allows doctors to charge more than the Medicare rate, despite what the market will bear. The one consequence for the doctor was the inability to treat Medicare patients for two years. Before the Kyl Amendment, doctors who didn’t accept Medicare fees were not allowed to treat Medicare patients; these patients comprised a large enough population that doctors weren’t willing to risk losing them. Roughly 96 percent of doctors participated in the Medicare program.

People paying higher fees for a doctor’s services might receive better health care than Medicare patients, so a two –tiered system might be established. Lani Sanjek, an associate director for the New York State Wide Senior Action Council asked “Would those with special needs, people with disabilities, many of whom have very limited resources, receive the benefits of improving technology and care obtainable by the general public?” While I think the question is very valid, and meant to remind others of the potential for health care disaster among the populations mentioned in the question, I also think the question is meant to demonstrate the futility of such a two-tiered system of healthcare. (Fleischer, Zames, 2001)

Persons with disabilities use a lot of assistive technology and personal assistance, both of which are not covered by many health care plans, and most certainly are not covered by the managed care programs of the 1990’s. The health care system was set up to deal with acute health problems, not chronic ones, and services for long-term care are rare. HMO’s avoid bringing persons with disabilities into their systems because they believe that such persons will frequently use expensive medical services. Most of the time, people who wanted significant medical treatment from an HMO were seemingly healthy when they joined, but became disabled later.

HMO’s have been picking their clients based on their visible health, and Lani Sanjek provides an example of how. “An HMO invites prospective clients to a hotel breakfast. After the HMO representative makes a pitch to encourage the Medicare recipients to join the HMO, those who wish to become members are invited to walk up the steps to the mezzanine to sign up. In this way the HMO has ruled out people who have difficulty leaving their homes, traveling, or climbing steps. According to the HMO’s assumptions, they’ve eliminated a large percentage of potentially expensive clients.” HMO’s consistently place profit above people, and I see no reason to expect they will change. (Fleischer, Zames, 2001)

HMO’s point people toward plans that fit their current medical needs, but change is inevitable where health is concerned. People need plans that provide benefits no matter where their health leads them in life. Dr. Linda Peeno, who was an HMO medical director from 1987 to 1991, gives a good description of HMO rationale for denying assistive technology to a young woman with a rare brain stem stroke that keeps her from speaking. The young woman’s doctors asked for a computerized voice machine to help her speak, the HMO’s rationale for not giving it to her, according to Dr. Peeno, was “She purchased a Volkswagen plan and wants Cadillac care – she will have to live with [what the HMO labeled] her choices.”

Efforts to save money are part of the HMO template, and any cutting-edge treatment is most likely to be disapproved of. A general practitioner who sees patients before pointing them to a specialist may not have the skills or knowledge to work with a specific disability, or be able to make judgments concerning what specialist can work with them. HMO’s that actually do send a patient to a specialist in their system still put cost-effectiveness above all, and refuse to see that one doctor has a special skill which another doctor does not have. Examples of persons with disabilities who have had trouble getting the care they need out of managed care are common. (Fleischer, Zames, 2001)

Susan Scheer of the New York City Public Advocate’s offices describes some different stories of persons with disabilities who have had trouble getting adaptive equipment out of a managed care facility. In one story there were three people who needed wheelchairs, two manual and one power. All three people were in the Oxford HMO, and each person was told that the plan didn’t cover the wheelchair they needed. They all complained and appealed, and each of them was given some money to cover the cost of their wheelchair. Interestingly, the person who complained the longest and loudest received ten times as much money to put toward their wheelchair as the one who complained the least.

In another story, Susan Scheer describes a man named Alexander Wood, who has paraplegia, uses a wheelchair, and works for Big Apple Greeters, a nonprofit company that promotes tourism in New York City. Mr. Wood was also refused a wheelchair by Oxford, and says that the best way to work with Oxford is to tell the truth. “When they turned down my request for a pillow to prevent pressure sores, I told them, ‘If I get pressure sores, I may need an operation and end up in the hospital. That would cost a lot more than a pillow.’ Within ten minutes I got a phone call from Oxford approving my pillow,” said Mr. Wood. (Fleischer, Zames, 2001)

An aluminum wheelchair apparently costs two thousand dollars, but the chair that Mr. Wood needs in order to work and get around costs three thousand two hundred dollars. Oxford stated that with its new wheelchair policy, and “in the spirit of human care,” it would “cover wheechairs with a contribution of five hundred dollars.” A dismayed Mr. Wood stated in response “I wouldn’t be able to take the wheels off and put the chair in back of my car. I wouldn’t be able to propel myself. I wouldn’t be able to be independent the way I am now.” The HMO council of New York states that insurance coverage of wheelchairs is not mandatory in New York, New Jersey, or Connecticut. I don’t find this in the least surprising; as recent as 1970 New York had a law on the books forbidding persons with noticeable disabilities from presenting themselves publicly out of concern for the tastes of nondisabled persons. Mr. Wood’s fight will hopefully continue.

HMO’s are not the only medical insurance that treat their clients poorly. Robert Fasano, who had become disabled because of a liver ailment, found himself on Medicare. Medicare does not cover medications, and would not pay for the medication he needed following his upcoming liver transplant. Mr. Fasano had to “spend down” and then wait for a last minute acceptance by Medicaid, which does cover the medications he would need. After going through one medical crisis after another, to include end-stage liver disease where toxins distorted his brain functioning, Mr. Fasano finally did have a liver transplant in time to save his life. (Fleischer, Zames, 2001)

For some persons with disabilities, such as me, medications are important to their well-being or even their survival. In 1965 Medicare decided to exclude drugs from Medicare benefits, and it seemed like a good way to cut red tape and fraud at the time. In 1965, medications rarely cost more than one or two dollars, but were not as significant as they are now. Medicare has not reversed their 1965 decision, even though medical technology tells them they should, and a number of persons with disabilities find themselves becoming Medicaid recipients. Even worse, some persons with disabilities are being forced to join HMO’s, which might cover some of the medications they need, but don’t serve many of the other medical needs they have.

A new federal program that runs through Medicaid called, Child Health Insurance Program (CHIP) was designed so that “more children who meet certain qualifications related to their medical condition or disability are able to participate in Medicaid without regard to their parents’ financial resources.” Only children with specific diagnosis are eligible, and the dollar amount of services is capped per year. There have been waiting lists for children eligible for CHIP. Although CHIP does include children with disabilities, the program isn’t as comprehensive as the Medicaid program. Medicaid requires that “if a treatment, service, or equipment – such as an organ transplant, a wheelchair, or an air conditioner (for an asthmatic child) is medically necessary for a child’s health, welfare, growth, and well-being,” it must be granted. Advocates for children with special needs were unable to receive the same requirement under the CHIP program, and so CHIP does not adequately serve children with the most serious disabilities and illnesses. (Fleischer, Zames, 2001)

Medical coverage through Medicare, Medicaid, HMO’s, CHIP or others are not serving the disabled community as well as they might, but there is currently no insurance that will cover independent living for persons with long-term care issues other than through a nursing home. Some people who have physical, developmental, or psychiatric disabilities need personal assistance services in order for them to live independently in a community. Yet according to Melvin R. Tansman, director of health policy at Eastern Paralyzed Veterans Association, “There is no comprehensive federal policy that addresses the need for long-term care.”

Several disability advocates have pointed out that it is usually cheaper to live independently than it is to confine people in a nursing home. Persons with disabilities very often prefer to live in a community and interact with it than to be separated from their community in a nursing home. The number of hours of attendant service people need fluctuates greatly; some people need twenty-four hour a day attendance, others need only an hour in the morning and an hour in the evening. If a person is denied twenty thousand dollars a year for home attendant services, that person will likely end up in a nursing home that costs fifty thousand dollars a year, say disability activists. (Fleischer, Zames, 2001)

The argument shows clearly the path that must be taken for the physical, mental and spiritual well being of persons with disabilities who need assistance; perhaps Medicaid will do enough ’studies’ to figure the way to the path. Medical benefits programs in America which are aimed at providing health care to persons with disabilities need a major overhaul. The goals our government has set before us of having persons with disabilities find jobs and participate in society conflict with the government’s goals regarding health care for these same people.

Another problem with the insurance business is referred to as, “Moral Hazard.” Moral Hazard refers to the fact that some people in our society cheat, and say they are disabled when they are not. To cover themselves, insurance companies try to make sure that their customers will get less money from being on the disability rolls than they would if they continued to work. The Moral Hazard theory ensures that people with disabilities get less than is needed for a decent living, and that translates into disability as a life of financial hardship, despite insurance. This generates a very real fear of becoming disabled. The way that insurance companies do business promotes discrimination against persons with disabilities, and leaves them without medical insurance in many cases. Government disability insurance programs do not make up for lack of private insurance coverage. (Russell, 1998)

Like a twenty-foot high wall, Social Security Disability Insurance(SSDI), and Social Security Insurance(SSI), present roadblocks to the well-being of a person with a disability. SSI is the bottom of the disability benefit pit. The average amount a person on SSI has to “live” on is $470 a month, which is about one-fifth the amount a paraplegic veteran receives, and three-fourths of what someone on SSDI receives. SSI is “means-tested”, meaning that you have to remain destitute to receive it at all. To paint a clearer picture, people with the same disability are getting different levels of public assistance, and have different living standards. People on SSDI receive less-than-adequate aid so that the American public can be assured that a few people are not cheating them by pretending to be disabled.

Doug Henwood, of the Left Business Observer, has pointed out that the poverty line in America is set at a 1950’s level that does not allow for the rise in housing, medical care and childcare costs during the last few decades. SSI’s goal has been to bring the elderly and disabled out of poverty by providing a national income floor; SSI has never reached that goal. The SSI benefit amount is around 74% of the national poverty line for individuals, and 82% for couples. People on SSI are allowed a much smaller income level than people on other programs are. (Russell, 1998)

In a statement about California’s governor, Marta Russell, in, “Beyond Ramps”, says:

“’Moderate’ Republican Governor Pete Wilson in California, a rich state with the eighth largest economy in the world, has steadily chipped away at SSI and AFDC benefits. In 1995 he attempted to reduce benefits 4.9 percent for those living in high-rent areas and a whopping 9.6 percent for those in rural areas. Disability advocates in California decried that folks on SSI had adjusted to two meals a day from past cuts, and were Wilson to succeed they would be forced to choose between paying rent and utilities and eating.”

I have to wonder how much the position of Governor pays; maybe enough to give those on SSI a third meal for the day? Anti-disability postures on the government’s part are apparently no news in America. A 1995 House Ways and Means committee report

found that the United States spent less on long-term disability benefits than nations such as the United Kingdom, Germany, or Sweden. The poverty that persons with disabilities live in is clearly due to our government’s lack of morality. Some people might suggest that it is the person with a disability’s fault, but there is enough to show that this is not the case. (Russell, 1998)

A quadriplegic woman, living on SSI, tried to earn some extra money by stuffing some envelopes. What she didn’t know was that her attempt to work was against SSI regulations, and when she reported her income, SSI dropped her benefits, told her she had to pay back ten thousand dollars and took away her medical coverage. She fought with the Social Security Administration to no constructive end. Lynn Thompson, the woman trying to work, killed herself, leaving a message on her answering machine blaming the Social Security Administration for the hell and anxiety they had put her through over a job stuffing envelopes.

Lynn Thompson’s story is dramatic, but persons with disabilities are put through similar stress and anxiety over jobs that most Americans wouldn’t even bother to look at in the newspaper classifieds. Getting accurate information from the Social Security Administration is extremely difficult; you can call it several different times with the same question and get several different answers. The Social Security Administration doesn’t care – the courts have found that it can’t be held accountable for the information it gives out over the phone. The fact that the Social Security Administration won’t give out accurate information makes many persons with disabilities feel that they just shouldn’t try to work. Persons with disabilities are literally in a socio-economic straightjacket. (Russell, 1998)

There is no question over social oppression of persons with disabilities in the United States, especially when you consider the view of Americans of the time concerning people with disabilities in the first thirteen colonies. People with disabilities could not settle in the villages and towns in the original thirteen colonies unless they could show that they could support themselves, and immigration policy kept people with disabilities out of the country. The views nondisabled people had of people who were, both in the colonies and in the states themselves later on, were reason enough to keep disabled people from participating in society. These same views kept people with disabilities from even attempting to become self-reliant. (Fleischer, Zames, 2001)

In history, disability has functioned to justify unequal treatment for people with disabilities, while doing the same to women and minorities. Disability played a significant part in the three great citizenship debates of the nineteenth and twentieth centuries; women’s suffrage, African American freedom and civil rights, and restriction of immigration. When a category of citizenship was questioned, disability was used to define who deserved citizenship. People who were against an equal standing in society for women pointed out what they considered to be disabling flaws, such as physical and intellectual flaws and psychological flaws. People who argued against racial equality, as well as immigration restrictions placed on new citizens, used disabilities such as mental illness, deafness, and blindness to justify why some people were acceptable citizens and some were not. Interestingly, these same disabilities were used to argue against discrimination of people with disabilities. (Longmore, Umansky, 2001)

As the population of our country grew, so did pressure to institutionalize persons with disabilities. Later on, rehabilitation became the accepted mode of “dealing” with disabled individuals. There were certain people, such as Randolph Bourne, who was very noticeably disabled, who attempted to describe his experiences with disability in early America. Mr. Bourne was described by Amy Lowell, a well known poet, in the following way, “His writing shows he is a cripple. Deformed body, deformed mind.” Paul Longmore, a historian, responded to this by saying, “When devaluation and discrimination happen to one person, it is biography, but when, in all probability, similar experiences happen to millions, it is social history.” (Longmore, Umansky, 2001)

The reason Americans think that people with disabilities do not have a history is because we have no written history. Society often thinks that there is nothing in our history to learn from. Minority groups have all been denied the tools needed to record their history, and history has always been something to tell the stories of heroes. People with disabilities are now following the paths of people of color, and women; trying to reach back into their history and write what has been ignored or lost.

By the beginning of the twentieth century, prejudice, discrimination and outright hatred of people with disabilities grew immensely. In 1911, a New York city ordinance stated: “No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view.” This ordinance wasn’t repealed until 1974. (Longmore, Umansky, 2001)

The year 1919 brought the expulsion of a young man with cerebral palsy from a Wisconsin school, even though he was keeping up with the class, because, “the teachers and other children found him depressing and nauseating.” Segregation and even sterilization of blind people, deaf people, people with developmental disabilities, or even people who had tuberculosis was common. 1912 saw the eugenic section of the American Breeders’ Association, which later renamed itself the American Genetics Association, creating a sterilization law for application to ‘socially unfit’ classes. By World War I, sixteen states practiced the sterilization law.

Soldiers returning from WWI helped America to begin seeing that persons with disabilities could work and be productive. By 1935, the Social Security Act established “old age and survivors benefits, unemployment compensation, and programs for disabled youth and adults”, out of a realization that, “assistance to disabled individuals was as much a matter of social justice as charity.” The Second World War saw so many workers leaving to fight in the war that persons with disabilities became very valuable workers. Industry began to accommodate persons with disabilities on the job, and disabled workers performed admirably. When the war was over; though, and soldiers returned, persons with disabilities were replaced largely by nondisabled workers.

(Longmore, Umansky, 2001)

The 1970’s brought a realization among people with disabilities, the realization that working together would help everyone in a better way than working competitively or separately. One result of this thinking was a concept containing the idea of disability as a political and social force. Participating in society meant making a universally accessible environment, and this meant redesigning society for everyone.

America has not obtained a universally accessible environment, as demonstrated through a 1998 study done by Louis Harris and Associates for the National Organization on Disability. The study shows that 79 percent of nondisabled people of working age are working. It also shows that a meager 29 percent of persons with disabilities are working, a difference of 50 percent. The main goal of the ADA was to increase employment among persons with disabilities; this clearly has not happened. ADA laws aside, public perception of disability is keeping persons with disabilities from getting jobs.

(Shapiro, 1994)

An example of negative public attitude toward persons with disabilities involves Caren Potoker, a woman with a master’s of science degree in social work from Columbia University, who also happens to use a scooter because of rheumatoid arthritis. Caren spent nearly two years finding a job, and endured fifty interviews. During her interviews she was exposed to, “blatant discrimination”, having to answer questions such as, “Why are you in that thing?”, or, “What is wrong with you?”. The job she finally got was through a company that was open to hiring persons with disabilities.

Many Americans with disabilities who are employed hold marginal jobs. Among the persons with disabilities who are not working, a large number have become so discouraged that they no longer look for work. Women, racial and ethnic minorities who also have a disability have to deal with multiple discrimination in trying to find work. To make matters worse, public places are not all barrier free. With a 70% or worse unemployment rate among persons with disabilities, I can see that there is a great need for some creative change regarding persons with disabilities and employment.

(Shapiro, 1994)

Medicaid, the one place to go for reimbursement for long-term support and services, is available only to people who are not working. For those who need these services, employment is not an option. People on Social Security Disability Insurance cannot earn more than $700 per month, or risk losing their SSDI and more importantly, their Medicare/Medicaid coverage. Yet Paul M. Igasaki, EEOC vice chair, states, “Corporate America is beginning to realize that a diverse work force makes economic sense and is crucial to its success. A 1993 Standard and Poor’s study showed that those companies that achieved some threshold level of diversity had stock market records that were almost two and one-half times better than similarly situated companies. That diverse work force includes individuals with disabilities.”

The results of segregation are harmful myths and stereotypes, whether that segregation sprang from physical barriers or attitude. The assumption by many nondisabled people that the segregation of persons with disabilities shows that they don’t need to be included, or are not capable of inclusion, is a huge social barrier. Children with disabilities are often excluded from school, or kept apart from nondisabled children, because people assume that disabled children can’t learn or because they are easily hurt. In like mind, lack of persons with disabilities in the workplace is seen as a confirmation of the fact that disabled people can’t work. The lack of persons with disabilities at work seems to be further confirmation that disability keeps you from working, and that disabled people are therefore a “dependent cast.” (Shapiro, 1994)

Disability discrimination in America’s schools is keeping children with disabilities from becoming skilled workers in our workplaces. For example, after the 1975 Education for All Handicapped Children Act passed, many school systems kept on running separate schools, and changed only when they were sued by parents, even though the courts almost routinely supported the children. Disabled students are kept from going on to become disabled, working taxpayers, instead of tax burdens. Schools today are fighting for the money to keep teachers and educate students, and students with disabilities are being shoved aside because of the cost to accommodate them. Lack of appropriate education, leading to work in society, is keeping persons with disabilities segregated from the rest of American society. Attempts to protect and promote future workers through law are meeting their own troubles.

The Americans with Disabilities Act, designed to enable persons with disabilities in America, faces a tremendous paradox in overcoming the prejudice and discrimination facing disabled Americans. If the Act requires institutions to be neutral, without regard to gender, race, or ability, it risks reinscribing the differences it is trying to remove, because the Act applies only to persons with disabilities. Yet if persons with disabilities are given special treatment they must first be singled out from society to receive that treatment. Any efforts made to enforce the Americans with Disabilities Act must deal with this paradox. A new stigma has been created because the ADA laws place requirements on employers that cost money while forcing them to pick out who is disabled and who is not. Meanwhile, systematic studies about the work lives of persons with disabilities are lacking, a fact that is troubling because it suggests that evaluating the ADA is not relevant. While the ADA was not meant to resolve all of the problems that persons with disabilities experience, it would certainly help to have some understanding of what is working and what is not in ADA law. (Francis, Silvers, 2000)

Since the eighteenth century, American thought has included the idea that we must refuse to take for granted inequalities between different people or groups. Unequal or different treatment continues, but it has been considered obligatory for society to explain any such treatment. In more recent years, scholars of the humanities have studied and challenged the explanations for inequality, based on gender, race and ethnicity that have arisen. When it comes to disability, one of the main justifications for inequality, they have not paid as much attention. (Longmore, Umansky, 2001)

Educating nondisabled people about people who use wheelchairs, for example, is a task that has some highly worthwhile results. As John Hockenberry states in, “Staring Back”, “I responded just as I did when people wanted to push my chair, or hold a door, or hand me something they thought I was looking at on a supermarket shelf. With a workable, relaxed face of self assured confidence I could dismiss all of these people politely or rudely, but dismiss them I did. ‘No need to be concerned,’ I said. ‘I’ve got the door. I am fine. I can make it across the street. No Problem. I’m not sick. I don’t need a push. I’m not with anyone, no.’” (Fries, 1997)

When a person who is using a wheelchair is obviously in need of assistance, by all means ask if he would like it. If he is not in obvious need of assistance, by all means leave him alone. Interaction with people who have a disability is no more difficult than interaction with nondisabled people, but the simple rules I have just mentioned are forgotten in our toolbox of social skills too often. Educating people by teaching them to ask if a person with a disability needs help when you think they do is easy.

Nancy Mairs, in “Staring Back: The disability experience from the inside out”, states:

“The utterance of an “I” immediately calls into being its opposite, the “not-I,” Western discourse being unequipped to conceive “that which is neither ‘I’ nor ‘not-I,’” “that which is both ‘I’ and ‘not-I,’” or some other permutation which language doesn’t permit me to speak. The “not-I” is, by definition, other. And we’ve never been too fond of the other. We prefer the same. We tend to ascribe to the other those qualities we prefer not to associate with our selves: it is the hidden, the dark, the secret, the shameful. Thus, when the “I” takes possession of the body, it makes the body into an other, direct object of a transitive verb, with all the other’s repudiated and potentially dangerous qualities. At least, then, the body had best be viewed with suspicion.” (Fries, 1997)

A ‘disability’ is only perceived as one if society chooses to see it so. Educating people about the social constructions that causes divisions between persons with disabilities and nondisabled people should be a goal of individuals, groups, organizations and the government. Teaching people that the differences among them are not what is important, but that the social construction of disability which portrays persons with disabilities as ‘not normal’ needs to be changed to a more accepting model, would have an enormous impact on the lives of everyone. The education of both people with disabilities and nondisabled people must include teaching people that the lines that define ‘normal’ and ‘abnormal’ are not clear at all. You cannot understand what it means to have a ‘mental illness’ unless you have experienced it, for example. (Marks, 1999)

The creation of disability in America began partly during the nineteenth century, when people began trying to define what was normal and what was not. As industrialization began to rise, workers began to have more and more accidents, leaving them noticeably physically different from their co-workers. Factories wanted uniform workers to do repetitive tasks, and didn’t attempt to adjust their format to include persons with disabilities. Disabled people were increasingly excluded from work.

Institutions were created to ‘provide’ for persons with disabilities, and became their own category in society. Persons with disabilities were placed into these institutions, and change had been created by an economic relationship. Asylums for the mentally ill were created to ‘house’ people with mental health disorders because they could not contribute economically to society, and society created its image of people with mental health disorders around the image of the asylum. Disability labels in general sprang from America’s institutions; but not always. (Marks, 1999)

Instead of creating labels which define some people as ‘normal’ and others as ‘abnormal’, we need to throw ourselves into the concept of accommodation so that everyone can participate in society. A lack of ramps can define disability for people who use wheelchairs, lack of use of ASL by the general public can do the same for hearing impaired individuals, and negative attitudes toward persons with disabilities that are not easily visible can also define disability for that group of people. The nondisabled population often takes for granted its own definitions of ‘normal’ and ‘abnormal’. It is hard to understand what it means to be ’sane’ if you have no understanding of what it is to be ‘insane’. Intelligence and stupidity are hard to understand unless you know them both.

Dear House Majority Leader

YOUR NAME

YOUR ADDRESS

YOUR CITY, STATE

YOUR ZIPCODE

YOUR PHONE NUMBER

YOUR EMAIL ADDRESS


Dear House Majority Leader,

The purpose of this letter is to raise your awareness of a dangerous situation that is costing lives and causing needless suffering among patients and residents of persons in Nursing Homes, In-Home care situations, and Hospitals in our State. At this time, in our State and elsewhere in our nation, Nursing Facilities are allowed to staff their facilities according to a, “warm-body,” theory which accepts a level of Nursing and Certified Nursing Assistant staff as, “adequate,” based on the ratio of numbers of residents per numbers of medical staff. The problem with this theory of staffing by the numbers of residents is that the residents have health conditions which vary greatly. Many of these residents require care that demands Nursing and Certified Nursing Assistant time in far greater amounts than other residents, leaving medical personnel without sufficient time for other duties.

Nurses today not only have to work doing, “hands-on,” duties providing medical care, they also have an increasing amount of medical documentation to deal with. Due to the requirements for ever-increasing charting and treatment demands, as well as paperwork associated with transfers from hospitals, reports associated with resident falls, admissions, discharges, medication administration, and many other forms of documentation which remove them from the floor where they provide care, the demands on a Nurse’s time have grown to the point where staffing by acuity of patient needs is much more than just imminent – it is overtly necessary.

As reflected in State Surveys, as well as the failure of Nursing Facilities to meet the requirements by the State, staffing by acuity is past the point of crisis. There are Nurses with years of experience shifting from facility to facility; some are leaving the healthcare field entirely, because of the issue of staffing by acuity. These Nurses, who are the wealth of knowledge and experience in our healthcare field, are leaving and not returning for careers in other fields, such as Legal Nurse Consulting, or a change of career entirely. Who will be there to pass on such wealth of knowledge, Majority Leader? Who will be there to do the Nursing? How will the residents of our State receive the care they need if our Nurses are being worked to the point of depression? How can Nurses provide quality care when they have to pick and choose what treatments they provide due to time limitations?

The Certified Nursing Assistants in Long-Term Care facilities are being worked to the point of exhaustion as well, House Majority Leader. Nursing Assistants often have harder jobs than Nurses themselves, and at a wage that is discriminatory, to be plain. Nursing Assistant wages have not been raised in a decade or more, leaving Nursing Assistants a choice between living in poverty, or working multiple jobs. Overworked Nurses and Nursing Assistants place residents of Nursing Homes at risk.

House Majority Leader – Let our State lead the way in providing an example for the nation. Help the Nurses and Certified Nursing Assistants in our State by supporting their need for staffing by Acuity.

Sincerely,

YOUR NAME, R.N or C.N.A.