Publication summary: This booklet answers questions about how to work with a Personal Care Assistant (PCA) at meetings, conferences and special events. PCAs are attendants, caregivers, aides, support workers, and others. (Published 2014)
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Guidelines for Working with Your Personal Care Assistant
What is the first thing I need to know?
People with disabilities who use PCAs are the employers.
What is a PCA?
PCAs give personal support and help with the activities of daily living to people with all types of disabilities. This support can give individuals with disabilities the chance to be included in activities outside their homes.
Many people with disabilities use PCAs to care for them every day for many hours a day, while others use PCAs only from time to time. Employing a PCA for services outside the home, such as for a meeting or special event, may be a new experience to you. This brochure will help you learn how to work with PCAs in these situations. It is directed toward you - the employer. It does not explain the day-to-day support of full-time caregivers or overnight care at hotels.
Who is a PCA?
PCAs can be family members, caregivers or assistants hired by the people needing them, or by agencies. They can be paid through different sources.
How do you get started?
Whether your PCA is a family member, someone you have worked with before, or someone you are working with for the first time, there are some beginning steps you should follow. These steps will help you build a successful, working relationship.
Review each one of these activities to make sure you both understand them. Let your PCA know if you want him or her to give you the help you've discussed, or if you want them to wai until you ask for help.
- As a good employer, you should respect the way you speak to and treat your PCA. You always should treat a PCA as you would want to be treated. Be polite and respectful. Use good manners. Work as a team with your PCA to solve problems.
- If this is the first time you’ve worked with the PCA, hold a meeting to get to know each other and to let the PCA know your specific needs. Even if your PCA is a family member or daily caregiver, you should hold this meeting to talk about activities and needs that don’t usually happen during your regular day but might happen at a special event. Your PCA will not know what help you need unless you tell him or her. Even family members need to be reminded of what help you need and not what they think you need. Set clear guidelines for your PCA. Examples include:
- Getting beverages and food
- Drinking and eating
- Grooming and dressing (such as removing coats)
- Opening doors and elevators
- Making or answering phone calls
- Putting folders and materials in order
- Setting up computers or other electronic devices
- Putting on earphones and adjusting sound levels
- Turning pages
- Signing documents
- Making purchases
- Walking or feeding a support dog
- You and your PCA should tell each other the best ways to contact each other. For example, exchange phone numbers, text phone numbers, and email addresses. Tell each other if the information is for home or work and the best time to contact each other.
- Your PCA should not take part in the event. Explain that he or she is there to assist you so that you can participate. Your PCA is not the member, representative, or guest. You are. However, if you have difficulty speaking, or if the audience cannot understand you, explain to your PCA that you might ask him or her to speak for you.
- Remind the PCA that while you are working together, both of you need to be as quiet as possible in order not to disturb others. This is very important if you arrive late and have to get settled.
- List items and supplies that you always need to take with you, such as medications, straws, a sweater or oxygen. Make sure you have these items before you leave home.
- Talk about the clothing your PCA should wear, based on the type of event you will be attending. Uniforms usually are not required.
- Your PCA may or may not have training in First Aid or CPR. Therefore, you should always give your PCA information that will help you in an emergency, such as how to be moved or what medication you are allergic to.
- If you take medications, explain what they are for and whether you need help taking them. Give your PCA a list of your prescriptions and over-the-counter medications and how much and how often you need them.
- If you have a support dog, let your PCA know if you have to go out with the dog, or if the PCA can take the dog out without you. If possible, your PCA should practice walking and caring for your dog before the event. Some service dogs will take direction only from their owner, so they need to get to know your PCA.
How do you plan for an event?
- Find out the date, time, place, fee and other important information about the event.
- Pay registration fees before the deadline. Also, register your PCA and inquire if there is a fee for him or her. If you cannot afford the PCA fee, ask the event planner if they will assist with the payment. Do this before the event.
- Tell your PCA what they will need to know about the event, such as:
- Type of event: small meeting, large conference, luncheon with speakers, musical program, etc.
- What the event is about.
- Whether you are a member of the group hosting the event, or a guest.
- The reason you are going to the event, such as for your job, training, or for fun.
How do you plan for your transportation?
- Find out what kind of transportation you will need and make arrangements. Will you rent an accessible van, use a taxi, come with a group from an organization, use your own car, or use another type of transportation?
- Some PCAs can drive. Others will go with you in a vehicle that has a driver. Make sure your PCA knows what he or she will be doing.
- Show your PCA how you enter and exit a vehicle, and explain what assistance you need. If you use a wheelchair, show where to place your chair and how to use tie-downs. Make sure you buckle your seatbelts.
- Explain how temperature affects you. Do you need to be kept warm or cool?
- Bring the right clothing, such as a coat, gloves, hat, scarf, raincoat, poncho, or umbrella. If you use a power wheelchair, explain that it is important to keep the controller (joystick) dry. You may use a plastic bag to cover it in wet weather.
- Explain how long you can travel before needing to take a break, use a restroom, or have food or beverage.
- Tell your PCA and driver the exact address of the event so he or she can plan the best way to get there and how long it will take. Leave plenty of time to get to the event on time. Before arriving, find out where to park and if there is a parking fee. You or your PCA should have the correct parking payment with you. If you need to use an accessible entrance, ask the driver to let you out at that entrance.
- If you know you are going to be late to the event and people are expecting you, phone or text them so they will not worry. This will let them know whether to begin the program without you.
When you arrive
Ask your PCA to do the following, when you need help:
- Go with you and carry all your needed materials, such as tickets and printed information.
- Find the room or location of the event, and the closest elevator, restroom, and emergency exit.
- When you get to the room or event, sign in and pick up your materials. PCAs should not pick up a second set of materials for themselves, unless a host offers them.
- Follow you to an open place to sit and remove a chair if needed. Try to sit at the tables or a central location so that you can participate with the other attendees. Ask your PCA to sit beside you or directly behind you, whichever is the easiest to assist you. Some of you will not need your PCA to be right next to you, but he or she should always be in the room where you can get his or her attention.
- If changing from a wheelchair to a regular chair, ask your PCA to move your wheelchair out of the way. Do not block or ge in the aisles. Also, keep walkers, crutches, canes and electrical cords out of the way.
- If needed, remove your coat and make sure you are comfortable. If event is offering refreshments, get you a beverage, straw and snack.
- Set up materials and electronic devices in front of you. As the meeting moves on, open folders and change pages when the group is working on them. If using a talking computer, keep the sound at a low level or use earphones.
- Turn off the ringer on cell phones during meetings. Answer texts, calls or voice mail during breaks.
- Do steps 3-8 before event begins so that you do not disturb others and you will be ready to participate.
During the event
- If you cannot raise your hand, ask your PCA to raise his or her hand to show people you want to be called upon or to vote.
- If you have difficulty speaking, or if the audience cannot understand you, ask your PCA to repeat your words. Your PCA should try to repeat your words exactly and not change the meaning of what you said.Your PCA should never speak on your behalf unless you ask. At no time should your PCA give his or her opinions, make requests, or ask questions unless you have asked him or her to do so.
- Take notes either by hand or on a device as needed.
- If microphones are at the table, use them so everyone can hear. Your PCA should hold a microphone for you, if needed.
- If you have a support dog, let your PCA know when to take the dog out, or when the dog needs water.
- Ask your PCA to tell you when he or she leaves the room. They should never participate in a different meeting than you are attending. Your PCA should never leave the building or location while you are at an event.
- Although you may be able to take care of yourself during parts of an event, you may need assistance when your PCA is out of the room. If this happens, you usually should wait for your PCA to return and not ask other participants to help you.
- If a meal is served as part of the event, ask your PCA to assist you. The PCA should be served a meal, too. If the meal is buffet style, tell your PCA if you want to go through the line, or what you would like him or her to bring to you. If you have asked for a special diet, the PCA should make sure you get it.
- Before, during breaks, and after meetings, let your PCA know when you would like to socialize, get to know and talk with other people. As needed, ask the PCA to assist you in meeting others.
After the activity
- If your PCA is not your driver, check ahead to make sure your driver will be meeting you at the time you need to leave—or to let the driver know if you are running late. Ask your PCA if he or she can wait with you, if needed, and for how long.
- Meet your driver at the agreed upon time and place, or wait for your PCA to pick you up.
- Discuss with your PCA how the day went. Did you work together well? Did you have problems? What could make things better? Before saying goodbye, always thank the PCA for helping you.
- If the PCA was sent by an agency, let the agency know how happy you were and if you’d like to use this PCA again. On the other hand, if you feel the PCA did not help you with what you needed, or you did not feel you worked well together, ask not to have the person assist you again.