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Access to Health Care
It makes sense that to stay as healthy as possible, a person should eat good food, get plenty of rest, exercise sensibly, and follow their physician's orders to take care of any special health problems they might have, whether it is an allergy, diabetes, or a heart condition. People who have a spinal cord injury have a number of things to do to protect their health, including taking care of bowel and bladder management, "listening" to signals the body sends when there might be a problem, and, of course, using practices that will prevent pressure ulcers (which means the same thing as "pressure sores" or "bedsores"). In fact, a recent study found that people with spinal cord injury who get good nutrition and stay at a healthy weight, exercise, do general activities to prevent pressure ulcers, keep a good attitude, improve their skills at problem-solving, and stop smoking and recreational drug and alcohol use are much less likely to develop a pressure ulcer 5 or more years after their injury than people whose lifestyle habits are not as healthy 1. At the center of any self-care program for anyone is staying in touch with their health care providers: a primary care physician (PCP), and specialists like an occupational therapist or a physical therapist. But how are you supposed to get well and stay well if you can't get to your doctor?
It can sometimes be difficult to get access to health care for a number of reasons, such as when insurance won't cover a treatment that you or your doctor requests, or a person may not have insurance at all 2 3. There are PCPs who are excellent general practitioners, but don't have enough detailed knowledge about spinal cord injuries 2 4, and the nearest doctor who specializes in health care for people with spinal cord injuries might be too far away for someone who lives in a small town, or who has trouble getting transportation 2. There are also cases where the rules of the clinic or hospital make it too confusing or too difficult to get an appointment, or where past negative experiences make a person embarrassed or uncomfortable, so they don't even try to go back 3. There are even clinics and hospitals that have physical barriers that make them inaccessible for people with special needs, and the doctors are unaware that their offices aren't accessible 2 3 4! And it can be more than just frustrating or even depressing when a person needs medical treatment, but doesn't have access to it 3; it can even lead to getting sick with a pressure ulcer or other illness, or becoming more dependent on help from others 3.
Perhaps one of the most frustrating rules of medical insurance for all patients is that health plans typically do not provide coverage for therapy intended to maintain health or allow people to keep up the skills they already have, even it if means the difference between living independently or needing care attendants or living in an institution. Usually, insurance will only pay for medical services that restore or improve function that has been lost 2 3 4 5, or will only pay for a limited amount of medical services; as Chris, one of our study participants, put it: "Back in the day, they used to keep you [in rehabilitation] for a year; now they turn and throw you within 3 months." And many people have trouble getting insurance at all, perhaps because their spinal cord injury is considered a "preexisting condition," or because insurance is too expensive 3. In fact, several studies have found that people with spinal cord injury do not get all the medical services they need 3 5 6 7. When people qualify for Medicare or Medicaid, it may improve their chances of getting requested services or equipment 5, but they still must follow the rules, which includes limits of how much treatment or assistive devices each year or for each new illness. All of this can put people in the difficult position of having to decide if they want to pay for medical or therapy services themselves in order to get the care they feel they need when the insurance company turns them down, or needing to look around for other sources of medical payment. For example, one of our study participants, Gary, discovered that he was entitled to medical treatment through his mother's policy; he quickly got admitted to a hospital for an infected pressure ulcer he had not been able to have treated before. For more information about paying for medical services, and ideas of what to do if your insurance declines something you've requested, go to our article on finances.
Many people with a spinal cord injury report that the average doctor they go to see does not know enough about their condition to give them proper care, such as understanding the limitations or the abilities of people with paralysis 2 3 4. Unless they are specialists in the care of people with spinal cord injury, health care providers may also lack knowledge about preventing or treating pressure ulcers; for example, Alley, who participated in our study, watched her pressure ulcer go from small (probably Stage 2) to infected and life-threatening (probably Stage 3 or 4) when a home health nurse and a wound care specialist both gave her treatments that allowed her condition to get worse. It is also common for a doctor to ignore a person's other current medical complaints and "blame" what they are experiencing on the spinal cord injury, possibly missing an important diagnosis of a new illness or condition 2 3 4. If you feel that your health care provider is not informed about the needs of someone with spinal cord injury, it's time to self-advocate, that is, speak up for yourself. If you are a patient at a clinic or hospital, ask to find out if there is a practitioner at the facility who has special training or experience working with people with spinal cord injury. If you have had a favorite health care practitioner in the past who was very skilled with you, like someone at your rehab center, contact them to see if they can recommend a doctor or therapist for you to see, or maybe you can even start treating again with that favorite practitioner! Talk to your case manager or to someone at your insurance provider to see if you can change your PCP to a doctor who is familiar with spinal cord injury.
There are some very fine rehabilitation facilities throughout the United States and in other countries, but not every city has a hospital or clinic that offers specialized care for people with spinal cord injuries. Three of our study participants - Alley, Robert and Tom - all moved from small towns to a large city with an excellent rehabilitation center. For other people who are already near a good health care provider, getting reliable transportation can be a problem; for example, Howard, one of our study participants, lived in an area where accessible transportation was only available on certain days, had to be reserved 10 days in advance, and then confirmed the night before, and then might still be canceled at the last minute if the service is overbooked. For Charlie, who lived in a nursing home that didn't allow residents to go out during the day, getting to a doctor's appointment meant sneaking out of the home when he could, and going 5 miles in his power wheelchair to get to the clinic, which sometimes led to scraping his skin in an accident. If you don't live near a good rehabilitation center, contact one by phone or e-mail (you can usually find this information by calling 411 or by using an Internet search engine like Google) and find out if they recommend any doctors or therapists in your town. Also be sure you know about all the accessible transportation choices in your area; your doctor, care attendant or case manager might be able to help you get this information, or a disabled advocacy group might also help you with information or actual transportation services. Another option is to find out if home health services would work for you.
Probably one of the most frustrating of all barriers to health care is when going to see a health care provider is such a bad experience that it discourages a person from ever returning 3 4. Sometimes this is because there are a lot of rules to follow that are confusing or too strict, like when Alley had a very serious pressure wound that needed immediate treatment, but the receptionist would not let her see the doctor without an advance appointment. Other times, medical care providers who may not be experienced with people with spinal cord injuries are not responsive to their needs, or, worse still, might act impatient with them. Howard got a pressure ulcer when the staff at his nursing home where he was didn't think he needed to be turned because he had an air mattress; another time, he asked a staff member to be suctioned because he couldn't breathe, and they replied, "Well, you're not that bad. You can talk, can't you?" This led to Howard and his family finding him a new nursing home. This was a case where a person really did not have access to health care, even though he was living in a health care facility, since the staff was not providing what was needed! For other people, the result can be that they feel humiliated or frustrated enough that they skip going back to the doctor, even if they have a problem like a pressure ulcer, because they had such a bad experience 3. If you find yourself in a situation like this, self-advocacy is again very important. Make a list of very specific examples of when they did not give you the care you needed, and report it to that health care professional, or, better still, to their supervisor. Let your case manager and your friends and family know as well. If that doesn't result in getting better care, find a new health care provider or facility.
Another surprising, and frustrating, barrier to getting health care is when the clinic or hospital is not truly accessible for people with disabilities. For example, studies reported that the examination table in many doctors' offices is too high for a person with spinal cord injury to get up on, and few offices have proper equipment to make a safe transfer possible 3 4. One study found clinics with sloped parking lots that were extremely tiring to go up, even from the disabled parking spaces 3. This is again a case where self-advocacy is very important; in fact, research has shown 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 8. Let your doctor or therapist know that their office or office equipment is not accessible. You may also wish to tell them that if they get more accessible furnishings, you will come back as a patient, and you will recommend them to other people with disabilities you know. (Even though the Americans with Disabilities Act [ADA] requires facilities of a certain size to be accessible for people with disabilities, showing the doctor that paying for new equipment to accommodate people with disabilities will be worthwhile financially can be a strong motivation!) You may wish to let your health care provider know that there are free guides available online that show how to make their facilities accessible; one is at the U.S. Department of Justice's ADA website, and the other, which is specifically for health care providers, is at the website of the North Carolina Office on Disability and Health. If you have a printer, you can even print out these brochures for your doctor or for yourself. 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 cheaper than people think it will be 8.
A large component of taking care of your health is seeing a doctor or therapist regularly. When access is limited by finances, although it is challenging, there are sometimes alternatives available that can help a little. When past bad experiences, like strict rules or unresponsive or impatient behavior, make a person feel like avoiding the doctor, it may take courage, but it could be worth it to let the health care provider know that they have made it uncomfortable to see them. And when a medical office is physically inaccessible, explaining to health care providers who may not even be aware that, for example, their exam table is too high, could result in a change that makes their facility accessible to you and to many other people with disabilities. But if your medical professional doesn't make efforts to take better care of you, or if they are not familiar with spinal cord injury, finding someone who is more experienced or specialized can make a huge improvement in the quality of care you receive. You can make a difference in your health!
In addition to the two Internet publications mentioned above (which explain how a health care provider can make their office more accessible), there are other good websites you can visit to find out more about getting access to health care. To find out more about what role or function the members of your rehabilitation team serve, the website of the LIFE Center at the Rehabilitation Institute of Chicago has an excellent description of the jobs of health care professionals. If money or insurance is creating a barrier to health care, the website of the Christopher and Dana Reeve Paralysis Resource Center 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.
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 the problem with your health care provider is only because 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, 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. And Mainstream, an online-only magazine of advocacy "for the able disabled," offers tips and sample conversations to give you ideas of how to talk to your doctor or therapist. Just by 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!
If you are looking for material that is written in "medical-sounding" language or is more academic in nature, we recommend a very clearly-written scholarly paper titled "Barriers to Health Care: Findings From Consumer Focus Groups - Barriers to the Health Care for People with Mobility Impairments in Managed Care Programs", which can be found on the website of Independent Living Research Utilization (IRLU). ILRU is a program of The Institute for Rehabilitation and Research (TIRR), and is affiliated with Baylor College of Medicine.
1 (2004). Patterns of recurrent pressure ulcers after spinal cord injury: Identification of risk and protective factors 5 or more years after onset. Archives of Physical Medicine and Rehabilitation, 85, 1257-1264.