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Home :: Health & Wellness :: Living with Illness

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About Living With Illness

Reviewed by NASW Center for Workforce Studies and Human Rights & International Affairs Staff

Introduction

Is It Acute or Chronic?

It's a Family Affair

Who Cares for the Caregiver?

Money Matters

What Are My Rights If I Cannot Return to Work?

What Happens If I Lose or Don't Have Health Insurance?

Introduction

If you or someone in your family develops a short or long term medical condition, whether due to illness or injury, you can count on one thing—your life and that person’s may not be the same. The injured or sick person may not be able to return to work or to their daily routine. The entire family and loved ones are affected by a person's medical condition. Having a disabling condition means you are not able to function at your prior level before the onset of illness or injury. You may not be able to work, at least not immediately, and you may be not be able to take part in everyday activities, like grocery shopping, housekeeping or even fun things like fitness, gardening and other pursuits.

Is It Acute Or Chronic?

With acute illness, you can expect to “get over it†in the short term and feel better or back to normal once you’ve been properly diagnosed and treated. The flu or a cold are examples of an acute illness. Appendicitis or pneumonia, which may be serious, can also be treated and resolved, and are therefore considered an acute illness.

A chronic illness, on the other hand, is a condition that lasts for a year (also called long term) or possibly longer, sometimes for the rest of your life. (chronic comes from the Greek word chronos, meaning time). Diabetes, glaucoma, multiple sclerosis, cancer and fibromyalgia are examples of chronic illness. More than half of all Americans have some kind of chronic illness, which accounts for more than 75 percent of all national health care spending.

It’s a Family Affair

One person’s illness can substantially alter a family’s dynamic, creating stress, upheaval, and worry about the future. While the affected person may have difficulty adjusting to a limited lifestyle and may experience byproducts of illness such as depression or anxiety, loved ones are impacted too. They may be placed into the often demanding and difficult role of caregiver. Children may feel resentful or left out if a sibling’s illness has dominated the family’s attention. Or, they may feel frightened if a parent is sick.

In other words, if someone in your family is chronically or acutely ill, you can count on a ripple effect. Everyone else will be affected, too.

Who Cares for the Caregiver?

One out of five adults in the U.S. falls into the role of caregiver for a loved one who cannot manage alone. If you help someone with daily living activities like bathing and using the toilet, getting in and out of bed or chairs, and preparing meals, you are a caregiver. Likewise, if you help someone with housework, grocery shopping, meals, managing finances or transportation, you too are a caregiver.

Trying to do all these things and also tend to your own family’s needs can overwhelm you and place your own health at risk. Getting the proper support and having a healthy mind, body and spirit are crucial if you are to continue to provide care to a loved one.

Money Matters

Finances – this is among the more concerning aspect of having a chronic illness, or becoming disabled, particularly if you are the breadwinner. Exactly how will you continue to generate an income and take care of your family if you are too ill to work?

Disability is something most people prefer to avoid thinking about. But the odds that you will become disabled are greater than you might realize. Some studies have shown that a 20-year-old worker has a 3 in 10 chance of becoming disabled before reaching retirement age.

One place to begin researching the benefits to which you are entitled is to with your employer’s Human Resources department. Another good starting point is to contact the nearest Social Security office, or phone them toll free at 1-800-772-1213. The Social Security Administration has financial programs for individuals who become disabled on a long-term basis, and who meet their financial and medical eligibility guidelines.

What Are My Rights If I Cannot Return to Work?

The rights of employees who become ill and cannot return to work are dependent on a number of factors. The first important step is to know your work policy on illness, injury, and disability, and to talk with the assigned employee who handles personnel matters. Such factors as full-or part-time employment, length of employee work history, size of business or organization, and policies for employee leave all impact your rights about returning to work or not, access to short or long term disability, and compliance with federal laws affecting employment.

For more information on employment rights, you can link to the US Department of Labor at http://www.dol.gov/odep/pubs/fact/rights.htm

For caregivers who may need to take a leave of absence from work to care for a loved one, you can access information on the Family Medical Leave Act at http://www.dol.gov/esa/regs/compliance/whd/1421.htm

What Happens If I Lose Or Don’t Have Health Insurance?

You are certainly not alone. The number of uninsured Americans has risen to more than 41 million, as of 2002. More than 8 million of the uninsured are children. Perhaps even more startling, 8 out of 10 uninsured people are in working families that cannot afford health insurance yet are not eligible for public assistance.

However, there is no reason to panic. Health care “safety net providers†have a legal mandate or a mission to offer medical care to all patients, regardless of their ability to pay. Health care safety net providers include community health centers, emergency departments, public hospitals, charitable clinics and others. Emergency Departments actually have a legal mandate to provide health care. The Emergency Medical Treatment and Labor Act or EMTLA ensures that anyone who comes into an emergency room, regardless of whether they can pay, must be screened and stabilized. The state or local health department is always a good place to begin asking about medical resources in your area.

If you become disabled on a long-term basis, you may qualify for a number of programs which help pay for medical bills and treatment. You may qualify for Medicare, Medicaid, or Workman's Compensation if you were injured or became ill due to a work variable.

Another important law or right to be aware of is the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The words may seem overwhelming, but anyone who is out of work due to illness or disability needs to be aware of this right. HIPAA protects health insurance coverage for workers and their families when you change or lose your job by giving employees rights in considering pre-existing conditions when trying to obtain another health insurance policy. There are restrictions, but to access information on HIPAA link to http://www.cms.hhs.gov/hipaa

Lastly, if you experience job loss for a period of time or permanently, the continuation of health insurance coverage may be possible with the COBRA Act. You may be responsible for the cost of continuing health coverage, but this may be an option for you. To learn more about COBRA, please link to http://www.dol.gov/dol/topic/health-plans/cobra.htm

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