Contributed by the Oregon Lifespan Respite Program http://www.oregon.gov/DHS/respite/
What is respite care?
Respite care is relief for families who are caring for someone with special needs: disabilities, chronic or terminal illness, aging or problems such as abuse or neglect. Respite care is short-term and temporary, lasting from a few hours to a month. Respite can take place once in a while, or be regularly scheduled care such as an after-school program.
Everyone needs time: time to complete tasks; time to do things that are fun and rewarding; time to simply relax; time to think about day- to- day plans, or to plan for dealing with major challenges. Without time for those things, anyone can become overwhelmed and exhausted. Families caring for someone with special needs need refreshing and energizing breaks. Respite is also very important to persons receiving care, regardless of their age or special need.
Respite care can be many things:
- a few hours to go shopping, see a movie, make appointments, or take a nap;
- a family vacation;
- being able to work or do volunteer activities outside the home;
- scheduling medical care that a parent or caregiver has been delaying;
- parents having rare time alone or with each other;
- spending valuable one-to-one time with siblings of a child with disabilities.
Each family determines how to use its own respite care, depending on each family's needs and resources and services available in the community.
Some basic questions to consider are:
- What kind of respite do you need, and why?
- In-home or Outside the home
- Short-term (a few hours or a few days) or longer term (a week or more)
- Would some combination of different types of respite be best for your family?
- What family concerns need to be considered (family vacations, stressful times at work, sibling concerns, etc.)?
- Do you already know someone who would be a good respite provider?
- How much can you afford to pay for respite care?
- If a parent cooperative is available, would you be interested and able to exchange care with other families?
- Are there particular qualifications that you expect in a respite provider?
Make respite care work for your family
These guidelines will help make respite care a positive experience for everyone involved. They’re mostly common sense and courtesy. Your local Lifespan Respite program may also have some suggestions; read all of the program’s information. Ask the program staff if you have questions; that’s their job.
- Plan ahead -- Have all the information the provider will need on hand and ready on short notice. There may be times when you need respite with little advanced notice.
- Give yourself a break -- Make respite part of your routine. Don’t wait until you’re exhausted. Practice using respite for activities you want to do rather than for things you ought to do.
- Request respite services in a timely manner -- Apart from emergencies, it usually works best for families to request respite care three to five days in advance. This helps providers and programs to plan respite for all families more effectively.
- Give early notice of cancellations -- If respite must be cancelled, give 24-hour notice whenever possible.
- Be prompt in returning -- Return home or pick your family member up at the scheduled time; be sure to call if you are going to be late.
- Provide emergency contact information -- Leave a number where you can be reached and the name and number of someone who can be called in an emergency. Tell your provider right away of any changes in plan.
- Provide written medication instructions -- This includes prescription and nonprescription drugs.
- Encourage questions -- Let providers know up front that you welcome their questions. If there are things that you can’t answer, or that must be kept confidential, say so clearly to the provider.
- Be consistent -- If there are two parents in the home, or if siblings are giving instructions, everyone must agree on what the provider needs to know and do.
- Have a backup plan -- You and the provider should be prepared for unexpected events. Suggestions: a neighbor or relative to contact, or provision to take your family member to the provider’s home temporarily.
- Provide all necessities for longer stays -- This includes changes of clothes, spending money, special food, etc.
- Meet with prospective providers in advance -- Have a “pre-respite” meeting at your home for the providerto get acquainted and to meet the family members he or she will care for. Discuss family rules and guidelines, and write them down. Do this in front of the person being cared for if appropriate. Allow enough time to explain any special communication or care needs.
- Confidentiality -- Clearly communicate your wishes regarding confidentiality. By being in your home and caring for your family member, a provider becomes aware of information that some families do not want to be shared. Be certain that your provider is aware of any concerns and expectations you have about private information.
- Clarify provider expectations and boundaries -- Let the provider know what he or she is expected to do and not do. Discuss whether visitors are allowed, access to food, household appliances, stereos, VCR’s, the telephone, etc.
- Be clear about “house rules” for the person being cared for -- Discuss the rules at the start of each visit. Give clear instructions regarding bed time and other routines, who is permitted to visit your home, where your child is permitted to play, and any items (like tools or appliances) that are off limits to your child.
- Reveal any potential safety risks -- Talk about potential behaviors of the person being cared for, as well as physical risks from things like loose steps, faulty play equipment, pets that bite or scratch, and other things that might cause harm to both the care receiver and care provider.
- Debrief -- Do it right away if possible, or later by phone. Include the person receiving care if possible. Ask for a brief summary of the respite time and activities. Ask if there were any medical or behavioral concerns and the provider’s response to them. Find out if there is anything that you or the provider need to clarify. Don't “grill” the provider, but be alert to possible problems or indications that the provider used questionable judgement.
- Voice your concerns -- If a provider or respite program staffer does something that is not all right with your family, deal with that person openly and honestly. Bring up concerns promptly. Encourage your provider to do the same.
- Say “thanks” to your provider -- Recognize what your provider goes through when care is especially challenging. Occasionally, ask how he or she is doing.
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Qualities to look for in a respite care provider
- Acceptance and warmth -- Does the person show a real fondness for all people, including individuals who have special needs?
- Understanding -- Does the person recognize that people are in different stages of physical, mental, and social development? Does he or she respond appropriately to your family member’s limitations and strengths? (It’s a good sign when a potential provider asks questions.)
- Competence -- Can this person meet the individualized behavioral, feeding, sleeping, toileting and socialization needs of your family member?
- Patience -- Can the provider be patient when someone receiving care or a respite situation becomes especially challenging?
- Fun, humor and spontaneity -- Does the provider get on the floor and play with your child? Can the provider talk and laugh with an adult who is receiving care?
- Good Judgement -- Can the person solve problems and make good decisions, in both routine and emergency situations? Can you feel confident the family won’t be left with extra problems to take care of after respite care?
- Stamina -- Will the person be able to actively provide care and interact for many consecutive hours, and still be alert, enthusiastic, and patient?
- Respect -- Does the person listen to what you say? Will he or she follow your family’s rules and expectations?
- Communication -- Is the provider able to ask questions and communicate important information to you?
- Flexibility -- Can the person use a variety of approaches to meet the special needs of your family member? Is he or she willing to shift from previous ways of doing things in order to follow your expectations?
- Reliability -- Is the potential provider punctual, consistent, and predictable?
- Confidentiality -- Will the provider keep personal information about your child and family private?
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Interview questions - the long list
Here are some questions you might want to ask a prospective respite care provider; they are applicable to caring for a child or an adult. Select the questions that are most important to you.
Remember, limit the interview to about 10 questions. And keep in mind how much time you will have for questions and answers.
- Tell me about yourself. What are your hobbies and special interests? What do you do in your spare time?
- How would you describe yourself? Describe your personality. Describe your strengths and areas you are working on.
- Do you have any special training or experience you would like me to be aware of? Have you made use of available training?
- Discuss your experience working with individuals with the special needs of our family member.
- Have you had any experience caring for a person with (the particular illness or disability of your child)?
- Why are you interested in providing respite care services?
- Why did you leave your last position?
- What do you like best about this work?
- What do you like least about this work?
- Why are you the right person for the job?
- What kind of employer do you work best with? What are your expectations from this family?
- What would you do if we disagreed about something?
- Do you have any health problems that could affect your ability to do this job?
- What situations make you tense or nervous?
- Describe a difficult situation you’ve had to handle with a child. How did you handle it?
- This position will require that you make independent decisions. Can you give an example of a situation in which you made a job-related independent decision?
- Do you believe in discipline? If yes, how would you discipline? If no, what would you do?
- If my child cries when I leave, how will you handle this situation?
- What would you do if a child deliberately hit another child?
- What would you do if my child did not respond to your request?
- What would you do if you found a child with an open bottle you suspected contained a poisonous substance?
- If my child has to be taken to the hospital for an emergency, what steps will you take?
- (Describe situations that are likely to occur while your child is being cared for and ask them how they would respond.) What would you do if:
- He/she throws food on the floor?
- His/her older sibling has been on the phone for two hours?
- He hits you when you try to get him into his pajamas?
- He/she is whining and appears bored?
- If my child is unable to communicate, how would you know if my child likes a particular food or activity?
- What kinds of activities do you do with the child you are caring for? Are you willing to take my child to outside activities?
- Do you have CPR, first aid, and medication assistance training?
- What are the sleeping arrangements in your home for naps or overnight care?
- Are you easily able to awaken at night and respond to the needs of my child?
- Are you willing to have a criminal background check? A driving record check?
- What are your rates and payment procedures? (If these are determined by a respite care program, it is important that both the provider and the family have this information.)
- What hours are you able to work? During the day, weekends, holidays? Are there specific times when you are unable to work? How much prior notice do you require before scheduling?
- Do you have a valid driver’s license? Do you have your own transportation and car insurance?
- Do you smoke?
- Are you comfortable working with pets in the home?
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Options for respite care: In-home or Outside-of-home
Respite care in the family home
This can be formal, such as personal care services or home health services through various types of in-home care programs for a family member while you take a vacation; It can also be informal, such as simply having a neighbor come over while you go shopping.
Advantages of in-home care:
- The person receiving care may be more comfortable at home with familiar settings and routines.
- All necessary equipment, toys, medications and other important items are right there.
- The home is already set up for the person receiving care.
- The home may be the best site for training a new provider.
- The family can relax in one part of the house while the provider cares for the family member in another. This is especially helpful while getting to know a new provider.
Disadvantages of care in the home:
- You may prefer to take your break at home. Respite may be a rare chance to have the house to yourself. This may also be a time to work on projects at home without distractions.
- Making arrangements for you to be away from home during the respite time may be time-consuming or expensive.
- You may not feel comfortable having someone in the home while you are away.
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Respite care outside the home
Options for care outside the home can include:
Respite in the provider’s home: some examples
- friend, neighbor or relative
- home provider located through a respite referral or listing program
- registered child care provider
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Respite center
It’s often located in schools, churches, and community centers. Respite can be offered after school, during the daytime or on Saturdays for children and for adults with developmental disabilities and other special needs. There are also day programs for seniors that offer respite to spouses and other primary family caregivers. Additional special times can also be available during holidays or summer breaks. Programs usually require planned scheduling, but may also have “drop in” times.
Potential advantages:
- Trained and supervised staff
- Planned, age-appropriate activities
- Opportunities to socialize
- Frequent, planned access to respite
Potential disadvantages::
- May be limited to a certain age group or special need
- Transportation required
- May be higher costs due to staffing, space and other expenses.
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Community activities
Some fun and interesting activities can be offered through city parks and recreation programs, Church programs, or other community programs such as:
- Arts and crafts classes
- Martial arts classes
- Organized sports activities
- Senior excursions
A respite care program may be able to help you use these community activities by:
- Using respite funds to help pay for the activity;
- Finding someone to attend the activity with the child or adult;
- Advocating to assure that activities are open to persons with special needs;
- Helping to make modifications so that activities are more accessible.
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Summer or holiday camp (Overnight or day camps)
There are many kinds of camps, including some specialized camps for children with special needs. Camps do offer many of the benefits as those through respite centers and community activities, such as: structured activities, trained staff, and a predictable length of time for respite. Check with your local Lifespan Respite program coordinator for possible assistance with payments. You can also check with your local Campfire, United Way, school districts, Education Service Districts and other agencies for information on camps and “campership” or other financial assistance.
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“Respitality”
Sometimes, local hotels donate rooms or facilities for a weekend to parents or primary caregivers, while respite providers care for the child or adult with special needs.
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Family co-ops, exchanges or barter systems
Respite can be occasional informal care or structured formal cooperative systems. It usually involves no cost or exchange of money, but a trade of hours by members of co-op families.
Within the co-ops, families can have organized training for co-op members on CPR/First Aid, behavior management and other issues.
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Companionship programs
It can be an informal arrangement with neighbors or friends for someone of a similar age and with a similar interest to share an activity together in the community. This can be a trip to the mall, seeing a movie, or just playing or hanging out together.
It can also be a formal arrangement through programs such as Big Brother/Big Sister, “Special Friends” or “Fostering Friendships”.
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Respite care in a residential facility
Often available in group homes, residential programs, nursing facilities, hospitals and other programs. Benefits include:
- Trained staff
- Backup staff available in case of medical or behavioral needs
Potential drawbacks:
- “Institutional” setting with required formal admission procedures
- Cost may be high -- Medicaid or other funding sources may cover as short-term nursing care for children and adults with special needs.
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Crisis or emergency respite care
Important resource in case of:
- illness or emergency hospitalization of a caregiving spouse;
- death in the family, requiring to attend a funeral or memorial service;
- family disruption due to domestic violence
Contact your local community mental health program or United Way for information on emergency respite services, investigate programs beforehand, and keep their number handy.
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Family Care Book
Use this book to fill out important names, phone numbers, emergency information, and other useful information for your respite care provider.
http://www.oregon.gov/DHS/respite/docs/fam-care-bk.pdf
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All information on respite care information was contributed by the
Oregon Lifespan Respite Program http://www.oregon.gov/DHS/respite/.