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Living Situations Other Than a Private Home
People often say "there's no place like home," or "your home is your castle," because home should be a place where you can feel comfortable, feel like you have some freedom of choice, or feel like you're connected to the family, friends, spouse or partner you live with. If you live in a house or apartment, even if it's someone else's house (for example, our study participants Billy, Dave, Frank, Mitch, Steve and Tom lived at their parents' homes or with other family; Gary "couch-surfed" at friends' homes for a while; and Brenda lived with her boyfriend), you have a certain amount of control over your environment. Choices you can make about your home include how it's decorated, what belongings are easy to get to and what belongings are stored away, and whether it's accessible for a person who uses a wheelchair or has limited mobility.
But for people who live in institutions of any kind, whether it is a board-and-care facility (like where our study participant Robert lived), nursing home, rehabilitation facility, hospital, or especially for people with spinal cord injuries who are in a jail or prison, there are limits to the amount of control a person can have over their environment, and over their self-care, and, as a result, a loss of the feeling of personal independence 1. (In fact, many advocates for people with disabilities define "independence" as the right to make important personal choices. 2) These restrictions or limits on decision-making and personal control can also lead to health problems, and pressure ulcers (which means the same thing as "pressure sores" or "bedsores") are at the top of that list.
Studies show that between 20% and 60% of all people with spinal cord injuries develop a pressure ulcer during their first stay in the hospital 3. This certainly matches what we found among our study participants: about 25%, or one out of four, of our group got pressure ulcers while they were hospitalized the first time. In most cases, this happens because the health of the patient is too fragile to allow for proper skin care procedures; in order to stabilize their condition and save their lives, paying attention to possible pressure ulcers became a lower priority. This is just a circumstance beyond anyone's control. Among all people with spinal cord injuries who reenter a hospital for any cause, between 7.5% 3 and 12.9% 4 get a pressure ulcer during their stay. One explanation of this might be that when someone is ill enough to go back to a hospital, they are also too ill to move as much as they might when they are feeling better. Even people in a skilled nursing facility or a rehabilitation facility have about a one in four chance of forming a pressure ulcer 5. In these facilities, although there is staff available to handle most needs, there may not be enough people on duty to be sure that all patients are turned or do pressure reliefs at the right times all day and night. The point here is that sometimes people who are in a medical institution are more likely to get pressure ulcers because of how serious their health problems are, and not just because they are in a hospital or other facility.
But this is not the only explanation for the relatively high number of people who develop a pressure ulcer while in a medical institution. Every hospital or health care facility has its own set of rules, which usually include a list of patients' rights as well as patients' responsibilities. And in some cases, the rules might create a situation that makes a pressure ulcer likely. For example, our study participant Howard left the acute care hospital able to stay up in his wheelchair for 5 to 7 hours a day, but it wasn't the policy at the nursing home he moved into to put people up into a wheelchair, so he lost his sitting tolerance. And Howard was told that because he had an air mattress, they didn't need to turn him. The result was developing an advanced-stage pressure ulcer. Charlie lived in a nursing home that didn't allow patients to leave during the day (or, perhaps, not to leave without someone to go with them), so when he had a doctor's appointment, Charlie would sneak out and go the 5 miles to the clinic in his power wheelchair. Taking this long journey in his wheelchair led to an accident that resulted in Charlie's needing stitches.
It is usually a good idea to find out what the rules of a facility are, and, if possible, to find out before you are admitted as a patient. The admissions office should have a written copy available, or be able to tell you which office or person at the facility can give you a copy of the rules. If you notice a rule that might put you in danger of getting a pressure ulcer, speak up to your doctor or to the head nurse and tell them that you have special needs. If the staff is not helping you with pressure reliefs as often as you think you need them, again it's a good time to tell your doctor or the head nurse at the facility about the problem. Also tell your care attendant, a friend or a family member, so that they might be able to come and help you during visiting hours. And if you have a case worker, report it to them; they might be able to help you get some action, or, if things are truly not right for you, they might be able to get you admitted to a different facility. Don't "tough it out" when your health is at risk; let everyone know that you need help, right away.
But this doesn't mean that you are entitled to behave badly just because you haven't gotten treated the way you'd like. Look for ways that you can stay inside the rules and still get what you need; for example, Brenda found out what the shifts were at the hospital, and waited to ask for things till the times each day when there was extra staff on duty. Another study participant, Judy, would keep an eye on the clock herself, and go up and down the halls to find someone to help her back to bed when her sitting time was over. Judy also got several other patients on her ward to work with her, and together they protested to the hospital staff about being served spaghetti, which is difficult for some people to eat independently. (The organized protest worked; the patients got more food choices in the future.) In other words, neither Brenda or Judy hung around waiting for someone to come along, but they didn't lose their temper and act rude, either.
Anyone who breaks the law can be sent to prison, even people with spinal cord injuries. Four of the people who participated in our study spent some time in jail after their injuries. Not only is jail a hard experience for anyone, but it's even worse for people with spinal cord injuries because the reality is that there are just too many health risks behind bars. While there are many activities that people with a spinal cord injury can take part in and do very well, the truth is that, no matter where they live or what their income, a person with spinal cord injury has more risks to their health than the a person who does not have a disability, including being more likely to develop some kind of illness or medical complication, requiring more specialized or complicated health care, and often needing extra health supports such as medications, care attendants, and medical equipment (like a wheelchair or air mattress) 6. When someone is in jail, they may not be able to get any of these health supports; for example, one of our study participants got a pressure ulcer when the padding on their leg brace wore out and wasn't replaced. (The guards probably didn't even realize how dangerous it was for this person to wear a brace that was rubbing against their leg without padding.) A study participant also got a pressure ulcer in prison when, due to overcrowding, this person was one of many inmates forced to sleep on mats on a concrete floor, a condition that happens even in county jails 7. Another risk in jail is not getting proper medical treatment; when one study participant injured their skin transferring to a shower chair, the prison infirmary (that is, clinic) discharged them after only 2 weeks because the infirmary needed the bed. Because the pressure ulcer was still open, it got infected and needed surgery; this person was again released from the prison hospital too soon, and the wound reopened when they went back to the prison yard. And, of course, there is a danger that when in jail, a person will be hurt by violence; one study participant said that they had a pressure ulcer that was made much worse when they were mistreated in jail.
Someone who is in jail and not getting proper treatment should tell the medical staff, but also tell their lawyer right away. Unfortunately, it's possible that due to problems like overcrowding or lack of understanding, they still may not get the medical help they need, and pressure ulcers and other injuries are likely to happen. Of course, nobody wants to go to jail, but when someone has a problem with their health, such as a spinal cord injury, it makes sense that staying out of prison is vital. And the best way to stay out of jail is to stay away from crimes, including gang activity and buying, doing or dealing street drugs.
To sum it up: when a spinal cord injury makes it hard for someone to keep control over many areas of their lives, giving up even more control because they are in an institution with rules to follow can be very frustrating, or even depressing 8. If staff or other people don't pay attention or make mistakes with a person that lead to a pressure ulcer, being in the wrong institution can even hurt their health. And if that institution is a jail or prison, well, the number of possible health risks grows, a lot. Sometimes, a person can't help being in a medical institution because their health is in trouble; in these cases, it might not be possible to avoid getting a pressure ulcer because of how bad those health problems are. But if you are in a facility, whether it is a hospital, rehabilitation facility, nursing home or board-and-care, and you need the staff to help you with something, tell them very clearly what you need in a polite way without yelling or being rude. If they don't assist you after a while (it's only fair to give them some time to react to your request), politely speak up for yourself to other people, like the head nurse. If the staff doesn't seem to want to hear any complaints, tell your primary doctor, your loved ones and your case worker. Remember: even when you are in an institution and you have to follow their rules, you still control your own decisions and your own behavior, and you can still let people know your needs are important.
If you'd like to use the Internet to learn more about institutionalization and people with spinal cord injury, good websites include United Spinal Association. United Spinal Association strongly supports the rights of people with any disability to live independently, outside of institutions, as does the Independent Living Institute (ILI). The www.independentliving.org Library contains hundreds of documents, presentations and papers about independent living, but please be aware that most of them are written for political, educational or medical audiences, so the most of the language is college or graduate school-level. It might be more interesting to read The Berkeley Scene: The Ed Roberts Campus & the Power of Nine, a very good article on the beginnings of the "Independent Living Movement" in Berkeley, CA, in the 1970s, on the website of New Mobility magazine. New Mobility also has two excellent articles, both written in June 1998, on the experiences of people with disabilities in jail; A Kinder, Gentler Hell? is about a program in California for inmates who use a wheelchair, and Life, Death & Disability Behind Bars has personal stories of several individuals with disabilities who were in jails around the country at that time, including one prisoner who at one time had asked a court for the right to have a physician-assisted suicide but later changed his lawsuit to simply asking for control over his own health care decisions, only to die not long after that due to an infection from a bad catheterization. (Reading these articles can really create a strong feeling of wanting to stay far away from prisons if a person has any kind of disability at all!)
Articles about being in an institution other than a jail include Cabin Fever: 105°, on the website of PN/Paraplegia News magazine, which is published by the Paralyzed Veterans of America. It talks about "cabin fever," the feeling of unhappiness and restlessness that comes from being stuck inside for a long period of time, and offers suggestions to deal with it.