What is Respite?
Respite is care provided on a short-term basis to provide relief for families and primary caregivers to restore and strengthen their abilities to continue providing care for a child or adult with special needs. Respite is needed by people of all ages and therefore is referred to as Lifespan Respite. Respite also provides the care-recipient with a temporary break from his/her primary caregiver.
Types of Respite
Respite care in the home can be an informal arrangement with a friend, relative, or neighbor to come over while you take a break or do other things. It can also be a formal arrangement for an individual provider through a respite care referral service or personal care services agency.
There are different ways respite care can take place outside the home, many of which are available throughout Louisiana. Others may be options for you to consider developing within the local community. Some options are available for the care-receiver, others are for caregivers, and even more are for both, which provide a good opportunity for families to network and support each other. Options may include:
- Care in the respite provider's home: This can be arranged with a friend, neighbor, or relative of the families.
- A respite center or day center: A place where planned activities for the day are appropriate for either children or adults. An example of a place could be a local ARC, or a memory care community center at a licensed facility such as an assisted living facility or an adult day service center. Staff are generally trained to provide direct care and supervision.
- After-school, weekend, evening "parent night out," "recreation & respite," or special holiday activities: These activities can be called by different names, and are offered through various community programs or churches for families raising children with special needs.
- A summer camp: This is an expensive option for both children and adults; application and financial arrangements often need to start early in the year.
- A "respitality" program: This is an opportunity for parents to spend time at paid hotel rooms by themselves, or with other parents for networking opportunities. Arrangements can also include children with disabilities for a day.
- A family co-op, barter, or exchange system: This usually involves co-op agreement in which families trade hours to care for each other's children.
- A companionship program
- Crisis or emergency respite care
- A group home, foster home, residential and assisted living facility, nursing facility, or hospital
Steps to Selecting a Respite Provider
Think about the types of care and level of support you need. This will give you an idea of what skill level you are looking for in a care provider (e.g., sign language, complex medication management, medical support from a Registered Nurse or Certified Nurse Assistant), and what type of care setting would have the best support and lowest risks for specific special needs of your family. The following steps are primarily for choosing an individual to provide care in your home, or at the provider's home.
- What kind of person are you looking for?
- Where can you locate a provider?
- How do you screen the provider?
- How do you orient and train the provider?
Types of care providers:
- Domestic employees - sometimes called "family employee" or "home care worker" or "personal support worker," this is a friend, neighbor, or relative who is recruited, hired, and paid directly by the family/consumer or by a general business provider/fiscal intermediary such as a brokerage on behalf of the family/consumer.
- Independent contractors - self-employed and generally work for multiple families/customers. Often recruited and hired by the family/customer. They can be subcontracted and paid by a general business provider/fiscal intermediary such as a brokerage on behalf of the family/consumer. They often are certified to provide behavioral supports or other specialized services.
- Provider agencies - sometimes called "in-home care agency," these are licensed or certified by the State to provide services in individual or group settings.
Some criteria to keep in mind:
- Safety and your family's needs (most important)
- Age range
- Has a valid driver's license and up-to-date car insurance (if transportation is needed and you are willing to pay for mileage)
- Willing to work with any pets you have
- Available times for work
- Categories of experience in special needs
- Acceptance and warmth -- Does the person show a real kindness 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 the person 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 judgment -- 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 the person 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 the person willing to shift from previous ways of doing things in order to follow your expectations?
- Reliability -- Is the person punctual, consistent, and predictable?
- Confidentiality -- Will the provider keep personal information about your child and family private?
An estimated 50 million family caregivers nationwide provide at least $375 billion in uncompensated services -an amount almost as high as Medicare spending ($432 billion in 2007) and more than total spending for Medicaid, including both federal and state contributions and both medical and long-term care ($311 billion in 2005) (Gibson and Hauser, 2008). A new national survey suggests that there are upward of 65 million family caregivers in the US. More than half (56%) are caring for someone under age 75 (National Alliance for Caregiving and AARP, 2009).
Additional Respite Resources
Respite care provides a temporary break for caregivers from their regular caregiving responsibilities. Respite care can be planned or emergency care. From time to time, families with caregiving responsibilities need opportunities for a break from caring for their loved one.
- The ABCs fo Respite
- Building Blocks for Lifespan Respite
- Family Caregiver Assessment
- Funding Summary Table
- Practical Tools for Caregivers
- Volunteer Respite
For More Information Contact
The OAAS helpline at: