Respite providers: Key roles and responsibilities

1. Work as a team with the family

You are a team member, not the coach or captain. Family members are more likely to be receptive to your ideas when they are respectfully offered as suggestions rather than expectations. It is the family’s decision whether or not to accept your ideas. If they choose not to follow your suggestions, work within their decision.

2. Gather information

The kind of information you need as a respite provider will depend on the particular needs of the care recipient and family. Here are some of the facts you may need before a respite session:

• Name, age and disability of the child or adult being cared for;
• Siblings to be cared for during the respite time;
• Any special needs the person has (including monitors, feeding, medications, etc.);
• Documentation or notes that need to be kept;
• The individual’s normal routines;
• The individual’s likes and dislikes;
• How discipline is handled;
• If there is any special equipment, how does it work?
• How payment will be handled;
• All necessary release forms are on file;
• The family’s emergency procedures, and location of any house alarms.
• Don’t hesitate to ask questions.

3. Give the family information about yourself

Families need basic information about the individuals providing respite care. The list below, adapted from the Arc of Multnomah’s suggested interview questions, outlines the most important questions you should be prepared to answer.

• What times are you available or generally not available?
• What experience and training do you have taking care of children or adults with disabilities, seniors, or other people with  special needs?
• What are your rates and payment procedures? (If these are determined by a respite care program, it is important that both you and the family have this information.)
• What are your discipline procedures?
• What kinds of activities do you typically do with children or adults you care for? This includes activities in the home, as well as in the community.
• What are the sleeping arrangements in your home for naps or overnight care?
• Do you have current CPR/first aid certification?
• Can you provide transportation and do you have a current driver’s license?
• What would you do if . . .

4. Basic care and supervision of your charge

• During respite care, you must assure that the care recipient is reasonably clean and is dressed in a way that respects the person’s values and privacy. If the individual has adequate basic self-care skills, see that personal hygiene tasks such as bathing, changing soiled clothes and caring for the mouth are properly accomplished.
• When the person requires help with personal functional activities, assist in a way that is respectful of the person’s needs and abilities. For example, the individual may be able to dress herself but need help with fine motor activities like tying shoelaces. Ask the individual and family if you are uncertain about the kinds of help to offer.
• You must see that the care recipient is appropriately supervised  according to the level of needs. Particular behavioral issues, special medical needs or other factors may  require constant monitoring.
• If you provide food and drink, be sure to discuss about the family’s standards for intake and nutrition. Also be aware of any food-related allergies or concerns.
• Basic care requires observing and reporting signs of sickness or injury to the family. Ask the family if the care recipient is vulnerable to particular illnesses and any common indications (e.g., unusual slowing down).
• Families and the individuals being cared for are the experts on basic care needs and required level of supervision. Discussing these things together is always a good first step for a respite provider and family.

5. Specialized care (e.g., giving medications, feeding, lifting, communicating)

Be aware of any special care needs before beginning a respite session.The individual and his or her primary caregivers are the first source of information on special care needs. Staff of the respite program, the family’s medical providers, and others may also be able to offer information and assistance.

• Ask and learn about schedules and techniques for feeding, lifting, transferring, or other needs of the care recipient. Administer medications as instructed by the family.
• Ask and learn about issues that might occur, and be prepared to prevent or respond to them.
• Types of problems include:
  • changes in medical status, i.e., signs and symptoms of impending seizure;
  • how often are the problems expected to occur;
  • signs of distress given by someone who can not verbally express;
  • any special equipment or clothing (i.e., a helmet) that must be used or worn;
  • any particular activities or hazards in the house or yard (e.g., a loose step for someone with brittle bones or vulnerability to head injury

6. Assuring a safe and healthy environment

Offer a safe and comfortable place for the person receiving care. Child care and other home care providers often use a checklist to help locate and minimize any risks in their home. Here is a sample checklist. Reviewing it periodically will help you, the care recipient and families know that your home is a great place for respite care.

7. Modeling appropriate behavior

“Modeling” means acting in a way that demonstrates good behavior to someone else. It is one of the best tools for teaching behaviors. Therefore, it is especially important to demonstrate the behavior expected of the child or adult being cared for.

• Be aware of the family’s standards and expectations for behavior (in the home and in the community). Then reflect those things in your own behavior.
• The respite program may have suggestions or guidelines of expected behavior for respite providers to model.

8. Managing behavior

Especially when caring for children, respite providers should encourage positive behavior and discourage problem behaviors. Some general steps to take:

• Ask the family for the expected standard behavior of the care recipient in the home and the community. Also, ask about any special behavioral issues to expect and respond.
• Ask about household rules for the person being cared for. For example, there may be special rules about food, bedtime, or boundaries.
• Ask the family  for specific techniques for time-out or correction. Also, find out about any natural consequences that follow particular behaviors.

Ask the local Lifespan Respite coordinator for information and referral to policies or guidelines, and available training in the community on behavioral management for children and adults with special needs.

Remember, the family is the ultimate trainer in the care of the family member.

Be aware of the details of any specialized behavioral modification program for the care recipient, and make every effort to consistently follow them. Discuss with the family and respite program coordinator if you are not able to follow the program’s expectations.

9. Planning activities that are fun, interesting, enriching and inclusive

Make respite time special by thinking carefully about the types of activities you will do. Some good places for things-to-do ideas:

• provider training manuals;
• books on games, crafts, science activity, gardening, etc;
• teachers and staff of child care programs;
• staff of day programs, group homes, and nursing homes.

Some guidelines to help with the creative process:

• Make it fun. Find out from the care recipient and the family, and plan fun activities accordingly. It may be playing cards, or tossing a ball, or strolling in the mall. It can even be a waste basket and some paper for a basketball game on a rainy day., (You can both even add a little “sports commentary” while you’re playing.) And don’t be afraid to get down on the floor and play, especially if you’re caring for a young child.
• Match the person’s skills and capacities. Fine and gross motor skills, reading level, mobility, etc., can make a great difference in whether or not a person enjoys an activity. Ask for guidance from family members, teachers and others on activities appropriate to an individual’s developmental level and skills.
• Make it interesting. Find out what special interests the care recipient has and include them in your activities.For example, if a person is interested in bugs, you might find a National Geographic video on the subject at your local library; or, you might cut bug pictures out of old magazines. Taking part in someone’s interests can be a good learning experience for you, too.It might also be fun to expose new things and to create new interests for someone by demonstrating things you know about.
• Enrich the experience. You can teach fun activities, new skills, good exercise, or introduce new people to the individuals doing the activities. It may be important for some individuals to find a balance between doing things alone or with some assistance. Allowing someone to do things alone can encourage self-confidence and independence and does not mean you are ignoring or neglectingthe person . Families are the best guides to the types and level of assistance you might offer.
• Be inclusive. This means being in the community and including other people as much as possible. For example, your presence may allow a child to participate in a game with other children; or espite time might be used to visit a county fair. The care receiver and the family would be able to help with ideas for inclusive activities. Make sure you know what the person’s boundaries in the neighborhood and community are when planning activities outside the home.

10. Respecting each family’s patterns, values and culture

Respite care is an opportunity for families and providers to experience each other’s routines and patterns, opinions, beliefs, and cultural values. This can be a very positive and enriching experience for both. It is important not to make judgments about individuals you are caring for or about their families. The Lifespan Respite program coordinator can assist in finding the appropriate match for you and the family.

11. Staying up-to-date on informationimportant to providing respite care

This means checking periodically on the things on this list. Have there been changes in medication? Is there any activity that isn’t currently safe for the care recipient? The easiest approach may be to ask the individual and family: Has anything important changed since last time I was here?

12. Communicating important information to the family or primary caregiver

You will regularly make important observations about the care receiver. It is very important that you pass on things you notice during the respite time. Taking notes may help you to remember and to share the information. Important things to note include:

• Indications of illness or injury;
• Severe behavioral issues;
• Significant changes from typical moods or behaviors;
• Excessive sleeping, or difficulty sleeping;
• Patterns of behaviors requested by the family to observe.

13. Respecting boundaries, family rules and the home environment

Be aware that you are working in someone else’s environment. Respect rules, values, and standards that may be different from your own. Some basic guidelines that may be simple and common courtesies, but . are very important to respite care being satisfactory for everyone involved:

• Show up on time. Be on time to allow time for you and the family to exchange necessary information before respite begins. Show respect for the family and for the care receiver. Remember that the primary caregiver’s respite time may be used for important appointments, a special event, or for a chance to spend rare time alone with a friend or relative. If you must be late, be sure the family knows as soon as possible.
• Respect the family’s standards for order or cleanliness. As long as a family’s home does not present a health risk, you as a provider will need to adapt to the household conditions.
• Have a clear agreement with the family on expectations for housecleaning or other chores. Be sure to ask whether tasks such as housecleaning, laundry or yard work are part of the respite agreement or not.
• Know the family’s emergency phone numbers and procedures. Go over locations of fire extinguisher and first aid equipment. Ask if there are particular neighbors or relatives to contact for help in case of an emergency.
• Respect the family’s rules and expectations for use of household items (appliances, entertainment system, etc.). Make sure you have permission to use and be aware of any specific rules for yourself and the care receiver.
• Ask about phone usage. Make sure you know if you should be expecting any calls, and where to leave phone messages.
• Discuss about food and drink. Be aware of any food restriction for the care receiver and yourself.
• Be clear about any verbal or written rules (bedtimes, snacks, chores, having visitors, etc.). These rules must not be changed without the family’s permission.
• Leave the home how you found it. The family should not have to clean up your messes.

14. Planning and negotiating respite time and location

Before a respite care session, be sure you and the family agree on:

• The exact day and time and location care will be provided;
• Whether overnight care is required;
• Any particular needs or expectiations;

Be sure to give the family at least a 24-hour notice of cancellation.

15. Maintain confidentiality and respect the privacy of the care receiver and the family

Families need to be able to trust that any health and safety information or records they share with you will be kept in confidence. Some basic confidentiality rules:

• Know the difference between need-to-know and want-to-know. Ask for information necessary to health, safety and appropriate care.
• Never share any verbal or written information about a family or family member in public.
• Check with the family what kind of health and safety information that can be shared, if you are caring for the individual in your home.
• Never photograph or record any image of the family or the care receiver without any consent.

16. Complete paperwork and maintain any record keeping required by the respite program.

Good records can be critical to obtaining funding for the respite program. They also document that standards are being met, payments are made, etc.

17. Know when to report abuse and neglect

As a respite care provider, whether you are paid or a volunteer, you may be mandated under the Oregon state law to report suspected abuse or neglect of at-risk population — infants and children with special needs.

For individuals with developmental disabilities, call 1-866-406-4287.

For adults with physical and mental disabilities, call your local Seniors and People with Disabilities Services.

For infants and children, call your local child welfare office.

In an emergency, call 911.