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Medical Administrative Issues
When someone travels to a different country, they might find that things take a little getting used to. In this new country, there might be different ways of doing things, including a different language, rules to follow that are unexpected or surprising, and traditions of how to act that are not like you're used to at home. The same applies for people who need medical help and enter the health care system. There might be cultural barriers that include not having translators available, formal rules that must be followed, and difficulties getting insurance or Medicaid/MediCal to pay for services that they want. If you don't "speak the language" of the hospital or clinic you want to get care from, the result might be situations that can keep you from getting what you need, or, worse still, might hurt your health. Here are some ideas about how to try to avoid administrative "red tape" that might limit you from getting the best, most timely health care possible.
Very high on the list of ways to avoid unnecessary mistakes in your health care is making sure communication between you and your doctor is completely clear. If you and your doctor do not speak the same language, bring a friend or family member to the doctor's office who is very good in both languages. Write down (or have your care attendant write down) questions about your health as they come up, and take that list with you when you see the doctor. Also write down details about the things you notice that seem unusual, and tell your doctor about all of these observations; they might be nothing, but one or more might be the symptom of a new medical problem. When you talk with your doctor, make sure that he or she understands everything you are saying, and that you understand exactly what the doctor is saying; repeat back what the doctor said in your own words, and write it down, to make sure you've got it right.
Even more importantly, you may find out when you talk to your health care providers that they truly did not realize there was something you needed that you were not getting. A study done by researchers in England found that people with disabilities commonly reported they needed equipment, care attendants, therapy or information about maintaining good health that they had not received, while the same people's doctors reported that they believed these patients were satisfied that they had all the medical support and information they wanted 1! Sometimes a lack of communication is all that stands between a person and better medical treatment; in such cases, carefully and clearly telling health care professionals exactly what is going on with you could help you get the care you need.
Another big area of communication has to do with your medical history. If you can, keep a copy of your most important medical records, or make your own version, writing down dates, the name of the condition, and the treatment or operation that was given. When you go to a new health care provider, tell them your medical history before you get any kind of treatment from them. An example of this was something that happened to one of our study participants, Alley. Her doctor requested that she eat a high-protein diet to help a pressure ulcer (which means the same thing as "pressure sore" or "bedsore") heal, but a member of the hospital staff kept bringing her high-carbohydrate muffins and treats that made Alley too full to eat all the protein she was supposed to. If you ever have an allergic reaction to a drug or food, be sure to let all your doctors know, as well as the drug store where you buy your medications, and consider getting a MedicAlert® bracelet or necklace if it is a major allergy, like penicillin. When health care providers know exactly what has gone on with your health in the past, they will be able to decide what the best treatment is for you now.
Just how important is it that you communicate clearly with your doctor and with your pharmacy or drug store? A recent study by the Institute of Medicine of the National Academy of Sciences supported a government plan to keep all patient records on computer because they found that errors, many of which are due to not having the right information about a patient, can be responsible for 45,000 to 98,000 deaths a year among all patients nationwide 2. Making sure a doctor, pharmacist or hospital has the correct information about you can help to save your life!
There are other types of medical problems that can come up because you and your health care provider are not "speaking the same language." If you don't know the rules of the hospital or clinic you are going to, or if you ignore those rules, the result can be that you don't get the care you need. For example, if you are a member of an HMO, be aware that before you can get any kind of medical treatment from any health care professional, you usually need to see your primary care physician (PCP) first for a diagnosis and a referral, that is, a prescription for specialized medical care. If you don't, your insurance might not pay for the treatment or medications you get. Before you go to a new health care provider or facility, get a copy of their rules, in the language that you speak best. If a written copy is not available, or if the written rules are confusing, call the office manager of the facility and ask them to explain the rules to you. They might sound too busy to talk to you, but you have to insist to them (in a polite way) how important it is that you understand their rules. This speaking up for yourself is called self-advocacy, and it can mean the difference between good medical care or bad.
A common problem in health care for all patients is when needed treatment or medical equipment is delayed. You need to find out about all the rules your health care facility has that might affect whether you get in the door or not; for example, some places require that you make an appointment in advance. Our study participant Alley had a badly infected pressure ulcer and attempted to see her doctor without an appointment. The receptionist followed procedure by sending Alley home without even letting the doctor know she was there. Alley's pressure ulcer got much worse in the week she had to wait for an appointment. This was a case where the rules made it hard to get access to health care; Alley needed to self-advocate by making it very clear to the receptionist, and her doctor, know that this was an emergency, and she needed to see the doctor right away, appointment or no. And two of our study participants needed new pressure relief equipment to replace equipment that had broken, but the new equipment was delayed in arriving. Mitch ordered an air mattress, but after a few weeks the company finally sent out the wrong item, which had to be returned. Frank's gel cushion broke, forcing him to use a foam cushion temporarily. Both Mitch and Frank developed a pressure ulcer while waiting for the right equipment to come. If any of your equipment breaks, whether it's a wheelchair, mattress, cushion, transfer aid, shower bench or anything else, let your doctor, care attendant or case worker know right away. Call them every day to make sure that they have gotten any required authorization from the insurance provider and ordered the new equipment; if you are very friendly on the phone and explain how important this is to your health, you won't be making a "pest" of yourself - after all, you are just advocating for yourself. If you can, find out the order number and a toll-free phone number or e-mail address for the equipment seller or manufacturer, and call them every day until they ship it. If you have the option to choose overnight, 2-day or 3-day shipping, it might be worth the extra expense to get the equipment before you get a pressure ulcer!
Another rule that often keeps people from getting treatment is a rule about recreational drug use and alcohol abuse. There are hospitals that require patients to pass a drug test to prove they are not using street drugs or drinking too much before they are admitted for certain health procedures, because presence of these substances can interfere with the outcomes. Three of our study participants were kept from entering the hospital because they tested positive for marijuana. If it means the difference between getting into the hospital or suffering along without medical care, staying clean for a while certainly seems worth it.
There are other rules that might keep you from getting the health care you need. An example was when Charlie, one of our study participants, moved into a nursing home that did not allow him to leave during the day for medical appointments, so he had to choose between breaking the rules at the facility to get to the doctor, or letting his health problems go untreated. Worse still, when he snuck out of the nursing home in his power wheelchair, he had an accident that injured his skin, requiring stitches. Another study participant, Howard, ran into problems when he found out that the disabled-accessible transportation in his area only ran on certain days, and needed to be reserved 10 days in advance, then confirmed the night before. If he skipped any one of these steps, or if the van turned out to be overbooked on the day he was planning to use it, he had to miss out on his doctor's appointment. These were certainly cases where, even though it seemed unfair, the rules kept people from getting the medical care they needed. Be sure to find out what rules apply to the medical services you want, whether the provider is a hospital, clinic, individual practitioner or it's a community service like transportation, a recreation center or a school or college.
Believe it or not, some places that provide medical care are actually not very accessible for people with spinal cord injuries. Physical barriers to care include equipment that is not easily used by people with impaired mobility, such as examination tables that are too high, scales that don't have grab bars, and so on 3 4 5. If you go to see a doctor and find that there are not accommodations for your convenience and safety, advocate for yourself. Let your doctor, or the person in charge, know that the office set-up is awkward or dangerous for you. Tell them it matters a great deal to you, and probably to other people with limited mobility who use their facility, that they make an effort to provide safe access. You can also inform them that a recent study has shown that the cost of making an office or workplace accessible for people with disabilities is relatively inexpensive, usually much less expensive than people think it will be 6. Let them know that there are free guides available online that show how to make their facilities accessible; one is the Americans with Disabilities Act Checklist for Readily Achievable Barrier Removal, on the U.S. Department of Justice's ADA website, and the other, which is ot the website of the North Carolina Office on Disability and Health, and is specifically for health care providers, discusses Universal Design. Be confident that speaking up for yourself could have a positive impact; research has found that even one meeting or talk (about 1-hour long) to an individual or a group about disabilities can be enough to increase their knowledge and improve their attitudes toward people with disabilities 6. But if the situation does not change, and you feel very uncomfortable, find another doctor, clinic or hospital to go to where they make a better effort to take care of your needs.
Sometimes misunderstandings do happen that cause delays or make it harder for patients to get the best health care possible, but the cause can very often be prevented. One way of preventing these situations is to make sure communication between you and your doctor or other health care providers is perfectly clear. Inform your doctor of any problems you've experienced, and if you have any allergies. Another method to prevent mistakes is to find out all the rules that patients are expected to follow before you go to the facility, so that there are no surprises when you get there. If you do everything you can to watch out for your own health, you will make it much more likely that you will get the proper care you deserve. Protect yourself!
In addition to the two Internet publications mentioned above (which explain how a health care provider can make their office more accessible), there are many good websites you can visit to find out more about dealing with medical situations that make you feel uncomfortable. If you are having trouble getting insurance or Medicare coverage, for example, Rights & Benefits, a page on the website of the Christopher Reeve Foundation, could be helpful; it has links to articles and other websites that give information about the basics rights covered by the ADA; sources of payment for medical services including insurance, Medicare, Social Security and Disability; people's rights to work and still receive government health care benefits; and people's rights to get vocational rehabilitation.
To get a better understanding of the rules that a medical facility might have, a Description of Rehabilitation Roles and Services, from the LIFE Center of the Rehabilitation Institute of Chicago, might be a good starting place. It explains what the job is of each of the members of a health care team. If you are wondering about the experience or knowledge your health care provider might have in treating people with spinal cord injury, Changing or Choosing Your Doctor, on the website of Craig Hospital in Denver, Colorado, can be a very helpful guide. It suggests questions to ask the doctor or yourself to size up whether this doctor is a good fit for your needs, and can help you decide if you should change doctors. They also have a page called You And Your Doctor: Rights and Responsibilities, which lets you know what your rights are as a patient.
But if think that the problem with your health care provider might be that the two of you are not communicating well with each other, Craig Hospital also has an article about Interacting With Your Doctor. Another good guide to better communication with your health care provider is Partners in Healthcare, which is a clear, easy-to-remember list from the North Carolina Office of Disability and Health. Let's Talk...and Listen, an article from inMotion, an online magazine of the Amputee Coalition, also has some good tips for both you and a medical professional to keep in mind when talking together about your health. Mainstream, an online-only magazine of advocacy "for the able disabled," offers tips and sample conversations to give you ideas of How to protect yourself when you go to the doctor. Just speaking face-to-face with your doctor or therapist about your concerns might change the situation, and help you get the excellent care you deserve from them!