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Care attendants, that is, people who provide any kind of assistance to a person with a disability, are becoming a larger part of the overall health care picture all the time. As medical breakthroughs make it possible for people to survive severe injuries and to live longer no matter what their disability, the role of the care attendant becomes more important in helping people with disabilities to lead lives that are healthier and more independent 1 2. (Many advocates for people with disabilities define "independence" as the right to make important personal choices 1.) The result is that the use of care attendants among all people with disabilities is growing 3; in fact, 23% of Americans today reported that they give care to someone, whether it is a partner, a friend, a family member, or a person who has hired them to be a caregiver 4. (Some people who are financially able choose to pay a salary to family members who are their care attendants.) Both paid care attendants and unpaid care attendants are part of the lives of most people with spinal cord injury; nationally, between 58.2% and 72.6% of all personal care services provided is unpaid, but about 44% of the ongoing expenses for people with spinal cord injury goes to the salary of paid care attendants 2. Many people receive care from both paid and unpaid care attendants 2 3, and, of the people who have care attendants whether they are paid or not, about 40% have one care attendant, 50% have two, and 10% have more than two people giving them daily care 5. Women with spinal cord injury are more likely to hire an outside care attendant, while men are more likely to rely on a family member who is an unpaid care attendant 2; in some cases, this may be because some men may feel better about themselves if they do not rely on someone else, or they may feel that relying on a "stranger" to care for them is in some way undignified or "unmanly" (this was why our study participant Dave chose not to hire a care attendant).
Despite the growing importance of care attendants in the life and health of people with spinal cord injury or other disabilities, it is still an area where a lack of financial support can keep someone from getting the care they need. Among people who do not have paid care attendants, 40% reported that the reason was that they could not afford helpers, or they were worried about having strangers in their house 4. In fact, 66% of adults with severe disabilities receive Medicare or Medicaid, but they only get payment for care attendants if they require "skilled" care from trained personnel or nurses (such as needing medications or special treatments), and fewer than 5% of people with disabilities who have private insurance can get payment for care attendants 5. In 1998, researchers into this subject wrote that:
And while little has changed in the situation in the years since they made this observation, there are small signs that care attendants are beginning to get more recognition as a profession. For example, in California, home care workers in most counties in the state have unionized, earn anywhere between minimum wage to over $10 per hour, and are entitled to benefits including mileage reimbursement, pensions, paid sick leave and even health insurance; furthermore, these workers' benefits can apply even to people who are providing home care to family members 7.
It is true that providing personal assistance can be physically and emotionally hard work that might bring little or no pay, might be done in addition to another part-time or full-time job, and might have little training or preparation for the caregiver before they begin working 2 4 5. But it can also be a richly rewarding experience. A study of people who are care attendants for family members who are elderly or disabled found that 71% reported that being a caregiver improved their relationship with the person they were helping, 89% felt very appreciated by the person they were helping, and 45% said they felt they had grown spiritually because of their experience giving care 4. Part of the challenge, and reward, of finding a care attendant, or being a care attendant, is to focus on the areas of the experience that provide these kinds of emotional benefits. Just as important as finding the right fit in assistive equipment is for a person with a spinal cord injury, is finding, hiring, training and retaining a competent care attendant who is "the right fit." A care attendant enters into not just the home, but the life of the person they are working for; because of this, finding a good caregiver requires not only the skills of a personnel manager, but also a bit of "match-making" to be sure that the care attendant and their client - you - can work together for your benefit.
A good care attendant needs many skills, but the description of their job depends on what you need them to do. For example, some people may be independent in preparing meals, eating and self-care tasks and just want the care attendant to help with "heavy" housework; other people might need to be fed, bathed and have assistance with bowel and bladder management. (It is estimated that, nationwide, about 1 to 1.5 million adults need help with two or more "activities of daily living" such as these 5.) Some participants in our study (like Brenda) talked about enjoying doing activities with their care attendants, such as shopping or going to movies; Brenda's care attendant, who had gone to beauty school, even styled Brenda's hair. Judy's attendants are familiar with the loose-fitting clothing she wears, so they take extra care to keep her dresses smooth when she sits down; a new attendant in St. Louis who was not so used to that kind of clothing let Judy sit on wrinkles, leading to a pressure ulcer (which means the same thing as "pressure sore" or "bedsore"). Some participants, like Chris and Helen, have had the same care attendant for years, forming a bond of companionship with them, and benefiting from the awareness they have gained, allowing them to spot any small change in Chris' or Helen's skin right away. In fact, some researchers believe that having the skills to guard against pressure ulcers might be the care attendant's most important quality 8; in the same spirit, 25% of people with disabilities who have a paid care attendant praised the health care they receive from them as excellent 4.
Deciding whether a care attendant is right for you depends on your health needs as well as your personal preferences and your financial situation. These facts can also help you decide whether it is better to ask a partner, friend or family member to be your care attendant or to hire someone else. Remember that when you have a paid care attendant, you are becoming that person's boss, and, as an employer, you will have responsibilities to them just as much as they will have responsibilities to you! "Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury" is an excellent guide that can help you make the right choice about personal care assistants. It was created by Debra L. Burdsall, an occupational therapist and community liaison for the Santa Clara Valley Medical Center's Spinal Cord Injury Project. Also included are samples of classified ads to use to find people who might want to work for you, sample questions to ask when interviewing a possible care attendant, a sample time sheet and lists of resources for more information about taxes, financial assistance, and so on.
Whatever choice you make, remember that you don't have to settle for a situation that makes you unhappy - if having a care attendant is right for you, find people who fit your needs and your personality. For example, our study participant Alma very carefully interviews possible care attendants, seeing them as potential friends as well as potential employees. She says she would rather find someone who has a little less medical experience but who gets along well with her and has a good, reliable character than someone who has more knowledge but whom she does not feel as comfortable with. As Alma puts it, "You have to get along. You spend so much time together, and it really is a personality match. So that is first, because after that, everything else falls into place. But if that is not in order, then you just have problems all the way." Think about what would be most important to you about someone who will be giving you care, and keep that in mind when you are looking for a care attendant.
Hiring a care attendant is really a time when you need to self-advocate, that is, speak up for yourself. Do your best to make sure your care attendant is knowledgeable; also look for someone with a personality compatible to yours. If you feel uncomfortable with a particular care attendant, consult with your physician or ask a friend or family member to check them out by asking about previous employers or observing them on the job, or both. On the other hand, keep in mind that being a care attendant is a difficult job that usually does not carry a high salary, so understand that there might be very reasonable limitations the care attendant might have, such as imperfect skills in the language you usually speak, wanting to take a break at a certain time of day (such as to pick up their kids from school) or not wanting to work certain shifts, such as evenings or weekends. It is probably worthwhile to accept minor areas like these if your care attendant is giving you good, reliable care overall.
Among people whose care attendants are family members, about one-third reported that their caregiver was someone who was in poor health themselves, so the health of their care attendant affected their own health 3. This was certainly the case for our study participant Robert, who lived with his elderly grandmother shortly after his spinal cord injury; at night he would sometimes choose to sleep in his own urine and feces because he knew his grandmother was too ill to come and help clean him. In about half the cases where a person's caregiver is not well, the person with spinal cord injury has no one else available to give the care they need 3; these might be times when both the person receiving care and the caregiver should find out if there are services that could help them both, such as support groups for the caregiver, respite care (that is, a service where someone fills in for the regular caregiver for a day or more so that they can get some rest), or health care services for the caregiver's own needs. Your doctor, case worker or a nearby hospital or rehabilitation facility might have more information about such sources of help.
An experience with the wrong care attendant can be emotionally devastating, and even dangerous to your health. Some care attendants are unreliable, not showing up when expected or simply quitting after just a few days, as often happens to our study participant Ken. He even had one experience where he hired a man who, like him, had had a troubled past but who was now Christian, but Ken sadly learned that this care attendant was smoking crack in Ken's home and stole from him before quitting abruptly. Unfortunately, situations like this are not unusual; one study found that 40% of people who have a care attendant reported that a care attendant had stolen from them (usually money, food, alcohol, clothing or jewelry; our study participant Helen had once had jewelry stolen from her by a care attendant) and 33% reported that a care attendant drank or used drugs while on the job 5.
Mistreatment (that is, a variety of ways of being treated badly, including being stolen from, being insulted, being neglected, being hurt because of a mistake or accident, being hit or receiving unwanted sexual attention) is another concern that comes up when thinking about care attendants. Of people who don't have care attendants, 19% said the reason was that they were afraid a care attendant might abuse or neglect them 4. When researchers asked members of two self-advocacy groups for people with spinal cord injury if they had ever experienced mistreatment from care attendants, sadly they found that 30% of the participants said their main care attendant had mistreated them at some point, and 61% said another care attendant (including past care attendants) had at some point time mistreated them.
The most common conditions that led to mistreatment, according to the study, were when the care recipient had extremely low income (possibly because it is harder for people with low income to find new care attendants when they are having trouble with someone, or because they can't pay a high salary), when the care attendant was newly hired (possibly because the person who hired them had not yet had the chance to find out if this care attendant was trustworthy), or when the care attendant worked over 40 hours a week (possibly because the care attendant did something wrong because they were too tired or too "burned out") 5.
The most commonly reported form of mistreatment was verbal abuse, that is, being cursed, insulted, talked to disrespectfully, or talked to like a child. Of the people who said they had been mistreated, 18% said their primary care attendant had verbally abused them and 29% said other care attendants had verbally abused them 5.
It is more serious when a care attendant gives incorrect medical care, or accidentally harms a person; 5% said their primary care attendant and 21% said other care attendants had made this kind of mistake. This happened to some of our study participants; for example, a home health nurse who visited Alley changed a dressing on a pressure ulcer and told her not to worry about the smell; a few days later, Alley discovered the wound had become so infected it eventually led to an amputation. Another home health worker prescribed the wrong kind of bed for Mitch; while waiting for the right mattress to be delivered, he developed a pressure ulcer from sleeping too long on the wrong surface.
Neglect, or not caring for a person at all, is probably the most serious form of incorrect medical care, because it is not done by mistake or accident - it happens intentionally. In the study of mistreatment mentioned earlier, 6% of the self-advocacy group members said their primary caregiver at one time neglected them, and 26% said that other caregivers had neglected them 5. In our study, Rachel was outraged to discover that a care attendant she had hired was not giving her clean diapers, but just putting back on dirty ones stuffed with paper towels, leading to a Stage 4 pressure ulcer.
If at any time you find that your care attendant is neglecting you, or if they are mistreating you in any other way, it is very important to self-advocate. Tell your doctor, case worker, partner, family members or friends what has happened, right away. If the person who hurt or insulted you works for a home health agency, report them to the agency and tell them you need someone else to provide your care immediately. Get the person who mistreated you out of your life as soon as you can. If they had a key to your home, get it back; if there is a safety issue, get help from their agency or from a friend or family member for extra support. If you think the person has broken the law, tell the police what they did. Our study participant Alley went to the police for help when her friend Lucy died and Lucy's care attendant stole some of Lucy's belongings; due to her persistence, Alley got the belongings returned. One person in the mistreatment study mentioned earlier was raped; she reported the crime to the police, and the rapist was convicted and jailed 5.
For some people, hiring a care attendant is simply out of the question due to the costs; for others, a care attendant is not desired because of personal preferences (as in Dave's case) or availability of other sources of assistance, such as family or friends (as in Mitch's case). But finding the right person as your care attendant can make your life much easier - and can become a valuable friend and ally, as Alma, Brenda, Chris and Helen discovered. Consider whether a trusted friend or family member might be the best care attendant for you, or whether you would prefer a professional who might have training or experience or other qualities you would like in a caregiver. In any case, make sure that the person or people you find give you the right help that you need to be as independent and as healthy as you would like to be!
In addition to the "Hiring and Management of Personal Care Assistants for Individuals with Spinal Cord Injury" booklet offered by the Santa Clara Valley Medical Center mentioned earlier, some helpful Internet resources on the subject of care attendants include videos available for loan via mail at no cost from the Spinal Cord Injury Video Access lending library of the SpinalCord Injury Network International, a non-profit organization based in Santa Rosa, California. The Educational Brochures section of the website maintained by Craig Hospital, a rehabilitation center in Englewood, Colorado, has links to five separate articles on different aspects of working with care attendants, including finding and hiring attendants and two articles intended to support family members or other loved ones who are providing long-term care. Lots of articles with information about Caregiving are on the website of the Spinal Cord Injury Model System, maintained by the University of Alabama at Birmingham. If your caregiver is feeling stressed out, these articles have tips they can check out to help take care of themselves while they take care of you.