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Everyone is talking about the high cost of health care. It's an issue that is at the center of political debates, and it's what can mean the difference between a satisfying life and a life full of pain and a loss of ability to work or participate in important activities for people who get any kind of illness or injury. Some private insurance policies have a lifetime limit that can be quickly reached by the extremely high costs of saving the life of someone who has been seriously hurt, and spinal cord injuries definitely fit into this category. Even though there are government programs like Medicaid and MediCal to serve as a "safety net" for people who can't afford their own health insurance or have "maxed out" (that is, gotten to the limit on a private policy), the fact is that there are still expenses that the patient has to pay for, limitations to what any insurance policy covers and limitations to how much an insurance policy will pay in a single year. And if people can't afford to pay for the medical treatment they need, they simply may not get it. The finances of medical care are very serious for anyone, but especially for people with spinal cord injuries.

What are the dollars and cents of medical expenses? You might know what your health care costs you, but looking at all people with any form of disability nationwide (a group of approximately 54 million people who make up about 20% 1 of the total American population), studies have shown that the average cost of health care yearly is $2,489, as opposed to an average of $420 a year for people who are not (currently) disabled. Of these amounts, people with disabilities pay an average of $427 a year of their own money (or "out-of-pocket"), compared to $144 on average for the nondisabled. In fact, 46% of all health care expenses, 62% of all nights spent in a hospital, 41% of all prescriptions, and 34% of all visits to doctors are for people with disabilities. Reasons for this higher cost of medical care include a "thinner margin of health" for people with disabilities (that is, there are fewer reserves to help them stay well and active if they have any kind of setback); chronic, that is, long-lasting problems or problems that keep coming back; complicated health care needs; need for prescription medications; and need for durable medical equipment (also called "DME"), a list of items that help someone to get around or do things, such as a wheelchair, shower chair, commode, air mattress, special cushions, cane, and so on 2.

But the higher share of medical expenses is not made up for by higher income; in fact, half of all people with disabilities are unemployed, and, for people who describe their disabilities as "severe," the unemployment rate is 70%. And two-thirds of the people who are unemployed reported that they would like to have a job 1. People with disabilities are three times more likely to have a household income under $15,000 a year (that is, what could be called "the poverty level") than people who are not currently disabled. In the year 2000, Social Security Disability Insurance and Supplemental Security Income (that is, SSDI/SSI) paid out $62.5 billion to 7.5 million people with disabilities to help them make ends meet 1.

How does a person with a spinal cord injury pay for their medical costs? What kinds of plans are out there? Unfortunately, there is no one answer to these questions. People are covered by a variety of plans, both private and government. Some plans are what is called "managed care," which is probably most widely known as a "health maintenance organization," or "HMO." Some people have an insurance plan that is "fee for service" (FFS), that is, doctors and therapists bill the insurance company, and the company pays a certain amount of the bill, based on the benefits of the plan, that is, the percentage or dollar amount for that kind of service that is agreed to in writing in the plan. And some plans are called "preferred provider organization," or "PPO;" in these plans, a person can choose to see any doctor they want, but a doctor or therapist who is "preferred" or "in-network," that is, who has signed a contract agreeing to charge the insurance company only a certain amount for a certain service, is usually covered 100%, while a doctor or therapist who is "out-of-network," that is, who didn't sign the contract, will usually be covered at a lower rate. That means the patient will have to pay more out-of-pocket to see an out-of-network doctor or therapist.

If a person was injured on the job, they might be covered by workers' compensation insurance, or "workers' comp." For example, one of our study participants, Brenda, was injured in a car accident while working as a messenger, so her health care treatment was paid for by workers' comp. If you received your injury on the job and you don't already have a lawyer to help protect your rights, you should probably think about getting an attorney.

Some people might be eligible, that is, they meet the requirements, for government insurance like Medicare or Medicaid (which, in the state of California only, is called "MediCal"). Medicare is health insurance from the federal government (that is, the United States national government) available to people over 65 and to people of any age who have certain types of disability. Medicare covers hospital bills and can pay for up to 100 days in a nursing home following a hospital stay of 3 days or more; it also pays for rehabilitation with a physical therapist, occupational therapist or speech language pathology (or "SLP," which can help with swallowing problems as well as with speaking problems), if the doctor has prescribed it. Because of changes in the national policy from time to time, there are sometimes changes in rules about who is eligible for Medicare and what it will cover (for example, some new rules and rates were put into effect on January 1, 2005). There are also different rates based on what part of the country you live in. Because of all these "ingredients" that go into your individual coverage, it is probably a good idea to keep up-to-date by checking for updates with your physician, your case worker, your local office or the Medicare website on the Internet every few months, or prior to going to a medical appointment. People can receive Medicaid or MediCal when they have no more money left to pay for medical care; a case worker might help you figure out if you are eligible. Medicaid and MediCal are insurance programs run by each individual state, and each state has its own rules, so this is again a case where it's a good idea to talk to your physician, case worker, local office or your state's health benefits website to get more information about your eligibility and what is covered. The websites mentioned below can provide more information on Medicare and Medicaid; you can also try phoning 1-877-267-2323, the toll-free (that is, no charge) phone number for information about both of these government services.

So, bottom line - how much do I have to spend? It's also hard to be exact about how much a person has to pay out when they visit a doctor. Sometimes there is a co-pay, that is, a certain set fee that the patient must pay for every visit to a health care provider. Some plans have a deductible, that is, a certain set amount of money that the patient has to pay out each year before the insurance coverage starts paying out anything. The good news about a deductible is that a patient only has to pay the deductible amount, out-of-pocket, once a year. Other plans have no deductible, or may pay 100% (that is, the total bill) for some services, especially if you go to an emergency room or have to be hospitalized. But insurance plans might also have an annual limit, that is, they only pay out a certain amount of money each year, or only pay for a certain number of treatments. For example, most policies limit the number of physical therapy, occupational therapy, or mental health counseling visits a person can have in one year, and limit DME items to one of a kind every 3 to 5 years (that is, one wheelchair every so-many years, one shower chair every so-many years, etc.) 3.

Here's an example of how much a patient might pay if their plan has a deductible and limited benefits: If a doctor bills a patient $200, and the patient has a deductible of $100, then the insurance company would expect the patient themselves to pay $100 to the doctor as a deductible. For the remaining $100 (that is, the original $200 bill minus the $100 deductible), the insurance would pay a percentage agreed to in the plan's benefits. If the benefits for this service are 50%, then the insurance company would pay $50 (that is, 50% of $100), and the patient would owe the doctor another $50 (that is, the remaining $100 of the bill minus the $50 the insurance company paid). The total the patient pays is $150. But...if the patient goes back to the doctor during the same year, they won't have to pay out a deductible again. So, if the doctor bills $200 again, then the insurance company will pay $100 (that is, 50% of $200), and the patient will pay $100 (that is, the original $200 bill minus the $100 the insurance company paid).

It might be a good idea to find someone who is an expert on insurance to help you to understand your coverage. It might be your case worker; it might be a financial professional, like a lawyer or accountant. It might be an insurance agent or adjuster, although they usually are required to look out for the insurance company's interests and may not be able to help the insured patient if there is a problem. It might be a friend or family member who is really good at understanding and explaining complicated written materials. Sometimes there is a billing representative at the hospital or at your doctor's office who really knows how to take care of insurance; see if they can assist you, or explain to you what is going on with your coverage. All insurance companies send out a booklet of their benefits; read through it yourself, or go through it with the expert you have found. Ask as many questions as you need to, especially if you are shopping around for new health insurance. Write down the facts of your plan in your own words, and use that as a quick guide in the future.

Is there anything special a person with spinal cord injuries should know about insurance? It's important to keep in mind that most insurance plans do not pay for what they label "maintenance therapy," that is, services to help you stay as healthy and functional (able to do things) as you are now. Most insurance companies insist that therapy restores abilities you have lost because of your illness, or helps you to do things better than you do now. But by not getting maintenance therapy, the plain fact is that many people with chronic illnesses and serious injuries do lose the abilities they have, and there's no guarantee that "restorative" therapy will get them back to where they were before. This leaves people frustrated, financially harmed (especially if they lose the ability to work due to a change in their health) and physically more ill, but the truth is that this is the way it is at the moment 2. Future changes in health care might force insurance companies to pay for maintenance therapy, but not now.

What do I do if my insurance refuses to cover a treatment I think I should have? There are times you might want to think about paying extra out-of-pocket to get a higher quality of medical care. For example, a person might decide to pay for maintenance therapy out-of-pocket; this could be very expensive, but it might be worthwhile to remain as healthy as possible. Another example was when one of our study participants, Chris, noticed that the cheaper medications were not as effective as other drugs that cost more. He also had several skin breakdowns caused by his condom catheter slipping because his health care provider gave him a cheap adhesive tape that didn't work. Paying more might have been worth it to get a pill or adhesive that did its job better.

Other times, people have to fight for their rights to get the coverage they deserve. One of our study participants, Alley, even had to check herself out of the hospital because her social worker told her on the phone that not only had Social Security refused to pay any more salary to her care attendants while she was in the hospital, but they wanted to be paid back immediately for money they had already sent out earlier. Alley was able to negotiate with the social worker to drop the demand for repayment, but her health was hurt by having to leave the hospital for a few days.

A face-to-face meeting with a government or insurance company worker, like Alley's meeting with her social worker, is just one way to speak up for yourself if you are turned down for coverage. First, gather all the information that you can. Get written records of your treatment where possible, or, if the treatment hasn't happened yet, get a letter from your doctor describing the treatment. In either case, talk to your doctor about the treatment and find out why he or she thinks it is necessary to improve your health. Ask the doctor if this treatment is usually given for your condition; if it is, this can help your case. If your doctor is not sure, use the Internet to find the answer for this question (good search terms would be "practice guidelines" and the name of the health condition that the treatment is for, like "spinal cord injury") 4.

While remembering to stay calm and polite (getting angry or being rude might only make the situation worse), call your insurance company and use the words "appealing your denied care;" an insurance company has to do something about an "appeal" - an appeal is a legal term - but if you just call and "complain," they have the legal right to ignore it. Then send them a letter saying "appeal" and "denied care" in it, and include written copies of the information you gathered from your doctor, the Internet and any other expert or source you used. If your insurance is from an employer, call the human resources department to tell them about your problems, and send them a copy of what you sent to the insurance company. Try to get the human resources people to support your request 4.

What if the insurance company still says no, or if I don't have insurance at all? Above all, get the medical care you need. Find out if you would be eligible for Medicare/Medicaid/MediCal for this treatment. See if the doctor will agree to bill you later. Ask them if there is someone else in their clinic, or that they know of, who might use a sliding scale, that is, only charge what you can afford, for patients who are disabled or who don't have insurance. Ask your friends or family to loan you the money, or, if they are able, to pay for the services. Find out about the health insurance your spouse or partner or parents have; sometimes other people are eligible on these plans. For example, one of our study participants, Gary, found out he was covered by his mother's insurance, and quickly got himself admitted to a private hospital for treatment. See if there are organizations in your community that provide assistance to people with disabilities. Find out if your church, temple or mosque has a fund to help congregation members. Do you know anyone who would put on a fundraiser for you, like a block party, dance, bake sale, car wash or a performance of some kind? Use the Internet to find out if there are national organizations that help people with health care needs; good search terms would be descriptions of your situation like "spinal cord injury," "foundation," "support," "eligible," "without insurance," and so on.

Dealing with money issues can be stressful, frustrating, depressing or even scary. If you get in a situation where money blocks you from getting health care, encourage or empower yourself to fight for your rights. Demand to know why they are turning you down for coverage for treatment. Look for other sources of funds. Be creative, stay hopeful, and don't take "no" for an answer. It's your health on the line!

The good news is that there are a lot of websites on the Internet with information about health insurance, disability benefits and other sources of money for health care for people with spinal cord injury. But, in a way, that's "bad news," too, because some of the information might be confusing, out-of-date (since health care policies and laws are changing all the time), or it might disagree with what another Internet article has to say. The best sources will probably be sources run by insurance companies themselves; by organizations that advocate (that is, speak up for) the rights of people with disabilities; or by the government. If a web page says that it is a copy of another page, try to go to the original website; it's possible that the copy is now old and newer information might be available on the original site.

Here is a list of web addresses of some Internet sites that are most likely to have the most up-to-date information, listed by subject. Next to each link is a short description of the page the link will send you to. Keep in mind that some of these pages will have links of their own that could give you even more information about your question.


Medicare home page
The government's main page for Medicare is a good place to start any search.

Medicare en Español
También hay una portada con información para Medicare en Español en Español.

Medicaid home page
The government's main page for Medicaid not only has links to information about Medicaid, but also can link you to websites about other financial sources, such as Medicare.

The Medicare Maze
Article on the website of Craig Hospital in Denver, Colorado, with the basic information about Medicare.

The Medicare Drug Program - A Good First Step
Love it or hate it, this program is the new way that Medicare pays for medications. This page, on the website of the Arkansas Spinal Cord Commission, explains what the card is and how to get one.

Private Insurance (HMO, PPO, and so on)

What is the Difference Between HMO, PPO, and POS?
A very good, easy-to-understand explanation of the differences between these different types of health insurance policies.

Social Security/SSDI/SSI benefits

Social Security Online
This is the main page for the Social Security Administration, or "SSA." Be aware that this page is so full of links that it can be very confusing to find the link you want. You can also call for information at the toll-free phone number 1-800-772-1213.

Benefits For People With Disabilities
Although this page is much easier to read and to use than the Social Security Administration home page, it is also very full of links and a little hard to read.

Seguro Social en Español
Portada para Seguro Social con información en Español.

SCI-Info Pages: Social Security Disability Benefits
Some people will find this article on the SCI-Info-Pages website more useful than the SSA's own home page, because SCI-Info-Pages collected the basic information from the SSA on one page that is easy to read, and has links to the SSA website and other useful pages. This award-winning website is maintained by Matt, a person who received a spinal cord injury at C-5/C-6 in a diving accident in 1999.

Maximizing Your Benefits
This July, 2001 article from New Mobility magazine explains how disabled people who work can still apply for, and receive, certain government benefits.

General Information about Finances

Choosing a High-Quality Medical Rehabilitation Program
This PDF booklet, which was prepared by Melinda T. Neri at the National Rehabilitation Hospital Center, includes a detailed, easy-to-read guide to health insurance plans, including private insurance, Medicare and Medicaid. A free copy is also available by phoning toll-free at 1-866-380-4344.

American Association of People with Disabilities
Digital Federal Credit Union (DCU)
For $8 a year, people can become members of the American Association of People with Disabilities (AAPD), an advocacy organization. One of the advantages for members of AAPD is the chance to join the Digital Federal Credit Union (DCU), which has special deals on loans for people with disabilities. For example, a mobility loan (that is, borrowing money to buy a wheelchair or adapt a van) can be paid back over 10 years instead of the 3 years most banks want. Credit union members can also open checking or savings accounts; the minimum deposit to join DCU is $5. (If you want to phone AAPD, the toll-free number is 1-866-241-3200.)

This website, maintained by the U.S. Government, has links to many of the federal government's disability-related information and resources.

Financial Assistance
Federal/State Benefits
These useful pages are from the National Spinal Cord Injury Association, a private, non-profit group whose mission is to advocate for people with spinal cord injuries and to enable them "to achieve their highest level of independence, health and personal fulfillment.

Proyecto Visión: información y Recursos Gubernamentales
Una página bilingue de la red para Latinos con discapacidades. Esta página contiene información sobre la comunidad Latina, discapacidades, recursos de empleo y recursos gubernamentales. Every page on this website for Latinos with disabilities is available in English and in Spanish.

1 Hunt, C. S., & Hunt, B. (2004). Changing attitudes toward people with disabilities: Experimenting with an educational intervention. Journal of Managerial Issues, 16, (2), 266-280.

2 DeJong, G., Palsbo, S. E., Beatty, P. W., Jones, G. C., Kroll, T. & Neri, M. T. (2002). The organization and financing of health services for persons with disabilities. The Milbank Quarterly, 80, 2, 261-301.

3 Neri, M. T., & Kroll, T. (2003). Understanding the consequences of access barriers to health care: Experiences of adults with disabilities. Disability and Rehabilitation, 25, 2, 85-96.

4 Theodosakis, J., & Feinberg, D. T. (2004, September 19). When your insurance won't pay. Parade, pp. 10-11.