Pushin' On: UAB Spinal Cord Injury Model System Digital Newsletter Volume 36 | Number 2 - Page 2

HEALTHY LIVING Personal Care Attendants and Spinal Cord Injury What is a personal care attendant? A personal care attendant (PCA) is someone who provides help with daily living activities. Do I need a PCA? Most people with a cervical spinal cord injury needs at least some help with daily actives. Those with higher levels of injury will need more help than those with lower levels of injury. What help does a PCA provide? • Self-care – might be clearing secretions, bathing, grooming, dressing, feeding, and bladder and bowel management. • Mobility – might be transferring, pressure relief movements, pushing a wheelchair, and transportation. • Set-up – might be setting up assistive devices so that you can do daily activities for yourself or setting up a computer to use for work or school. • Light housekeeping – might be food preparation, dish washing, laundry, and home cleaning. Is there a difference between a caregiver and a PCA? Both are often thought of as the same because they provide help in assisting with daily living activities. But a caregiver is a term often used for an unpaid person who’s in your family, like a parent, spouse or sibling. A PCA is usually someone who isn’t in your family and is paid to help. Is there a benefit to having a PCA instead of a caregiver? Some people simply have to rely on family for daily care. If so, you might want to talk with a psychologist, counselor or social worker about stress relief and ways to separate family roles from caregiving roles. But there are benefits to relying more on a PCA than a caregiver. • Helps avoid blurring the roles of caregiver and family member. • Helps reduce stress on the relationship, especially if a spouse is the caregiver. • May allow greater independence for you and your family member, allowing more opportunities to live an active, productive life. • May reduce the chances of a spouse becoming depressed. How do I find a PCA? There is no “best” way to find a PCA, but here are some suggestions. • Department of Rehabilitation Services - Many states offer programs to help find and, in some cases, pay for a PCA. • Center for Independent Living (CIL) – each state has at least one CIL that provides an array of services. Your nearest CIL might help with information and referrals related to personal care services in your area. • Online - Social media posts let friends and family know you are searching for a PCA. Someone in your social network who’s interested, or they may know someone. Also, some websites let you advertise for help or a list of people who are interested in providing services. • Be very careful with any online activity. You might avoid giving out any personal information until you first meet and get to know the person. • Flyers – posting flyers in areas that might catch the eye of person who’s in the field of providing personal care. For example, you Participate in UAB Research Low Carb/ High Protein Diet to Improve Metabolic Health in Individuals with SCI This study aims to determine the effects of an 8-week high-protein low-carbohydrate diet on metabolic health and gut function. Criteria to Participate • Have a SCI (tetraplegia or paraplegia) • Live in central Alabama and visit UAB 3 times • Willing to undergo lab tests (blood glucose, insulin and lipid levels, gut function, and body imaging) • Complete activity and food intake questionnaires Participants will earn between $250 and $450 for completing the study. Call 205-500-8180 or 205-996- 6896 or email SCIresearch@uab.edu for information. 2 uab.edu/sci Scale Up Project Evaluating Responsiveness to Home Exercise And Lifestyle Tele-Health (SUPER-HEALTH) This study evaluates the effects of an exercise program on improving pain, fatigue, physical activity, and physical function. The program is delivered through a tablet app in the convenience of the home using exercise videos. Criteria to Participate • Ages 18-64 • Mobility Impairment/Disability • WiFi Internet access in Home Participants receive a tablet and Fitbit to use during study and are eligible to keep all equipment at the completion of last study visit. Visit superhealthstudy.org, call (205) 403- 5509, or email superhealthstudy@uab.edu. might put a flyer on a hospital or skilled nursing facility bulletin board. You might post a flyer at a local college with schools of nursing, occupational therapy or physical therapy. • Advertise – you might try to pay for a classified advertisement in your local newspaper. It usually cost money, but an ad is one option to reach job seekers. If you do an ad, do it on weekends because that’s usually when you will reach the most people. • Commercial Agency – there are some agencies that provide personal care services. You might search for agencies using terms like “personal care,” “caregiver” or “home health” services. • Many commercial agencies have restrictions on the types of services offered. This might include limits on services considered to be “medical,” which might include bowel and bladder management. What do I do when someone is interested? You might first speak to the person over the phone. Give the person a brief overview of the type of help you need. Then, schedule an interview if there’s interest. What do I need to know about interviewing? Have a plan Prepare a list of questions to ask before you set up any interviews. Think of questions that help you find the best match. Ask the same questions to everyone so you can judge everyone on equal terms. Here are a few examples. • What’s your work experience? • Can you provide references? • Do you have a criminal history? • Do you have physical problems that prevent you from lifting or pulling? • Do you cook and do housework? • Do you have a driver’s license and dependable transportation? Hints for interviewing • Clearly explain in detail every task that you need your PCA to do. • Explain your schedule and the importance of staying on schedule. • Outline the education and training you will provide. • Explain any special rules you want them to follow. This might be things like no smoking, what to do if running late or can’t make it, and any limits on personal telephone use and texting. • Describe the work environment. Make sure the person knows if you have pets or need the room a certain temperature? • Invite the person to ask questions. Some tasks can be very personal. This helps to better understand what is needed and become more comfortable doing these tasks. • Get to know each other. Questions and answers are only one part of an interview. Interviews are also a good way to find out if you both feel comfortable with each other and get along well. Making your choice You select the person who best fits your needs. If you are having problems deciding, you might make a checklist of your needs and list the person that you think will best fit your needs. You want to also consider good qualities for any employee. • Did the person pass the background check of references and criminal history? • Do you think the person is dependable and will be on time? • Do you think the person is trustworthy and honest? • Do you think the person is able to follow instructions? • Do you think the person is someone who is friendly and someone you want to spend time with? What education and training do I need to provide? Most PCA education and training is done with hands-on experience. This means it’s up to you to provide the education and training to meet your unique needs, even if you find a PCA with a lot of experience. • Download factsheets from the Model Systems Knowledge Translation Center. You can highlight and discuss those parts that fit your unique needs. How do I pay for a PCA? The average pay for a PCA is about $10 per hour, and few people can pay out-of-pocket for services. You might contact a local social worker for your individual options, but here are a couple of common resources. • Some states help pay for a PCA through a medical assistance program or the state’s Department of Rehabilitation Services. • In some cases, private insurance and workers’ compensation insurance will pay for a PCA. What can I do to help keep a PCA? It can be hard to keep a good PCA even under the best of conditions. But you can make sure your PCA is in pleasant work environment. • Develop a professional, but fun, relationship. Humor can help create a more relaxed work environment. • Be polite and show appreciation. Say “thank you” and “please,” and, if you can, pay raises or small bonuses are always welcome. • Do as much for yourself as possible. This shows your PCA that you are partners in your care. • Be assertive without being rude. You are in charge of your personal care, but treat your PCA like a person and not like a servant. • Avoid major changes in your routine that disrupts the work schedule or wastes time. • Respect your PCA’s views, opinions and personal life. • Be honest about the hours worked and pay on time. • Don’t ask for special favors or expect your PCA to work for free. • Be flexible and understanding. Avoid being too strict and understand that honest mistakes can happen. Also, be midful that sometimes people can’t avoid being late or sick. What do I do if I experience abuse? Verbal or physical abuse is never acceptable. This includes someone abusing you and you abusing others. If you experience abuse, report it to your family and your local law enforcement at the safest opportunity. Then, follow the advice of law enforcement on taking action. UAB Spinal Cord Injury Model System 3