What Are Respite Services?

Respite services - Flowers

What are respite services?

Respite services are caregiving services that are provided to aid with maintaining the goal of a patient living in a natural community setting by temporarily relieving the primary unpaid caregiver, such as a family member and/or adult family foster care provider, and is provided during those times of day when a caregiver is not being paid to provide care.  

Respite services are intended to provide planned short-term and structured breaks for families and other unpaid care givers. These services are helpful for caregivers of children with a developmental delay, children with documented behavioral problems, adults with an intellectual disability, and adults with cognitive loss. They assist with giving external support and maintaining the primary care giving relationship. Respite services also provide a positive experience for the person receiving care. The idea of a short term break is used to describe the process.

Even though many families take great pride in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences for the primary caregiver can be overwhelming without additional supportive services such as respite. Respite has been shown to help sustain family caregiver health and well being, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect. In the United States there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Respite services are what Alzheimer’s caregivers report they need most. One study found that if respite care delays institutionalization of a person with Alzheimer’s disease by as little as a month, $1.12 billion is saved annually.  A similar study found that as respite use increased, the probability of nursing home placement decreased significantly.  Without this home-care, most of these cared for would require permanent placement in institutions or health care facilities. A study showed that respite may also reduce the likelihood of divorce and help sustain marriages. 

U.S. businesses also incur high costs in terms of decreased productivity by stressed working caregivers. A study by MetLife estimates the loss to U.S. employers to be between $17.1 and $33.6 billion per year. This includes the replacement costs of employees who either resign or take extended leave because of overwhelming care giving responsibilities, absenteeism, and workday interruptions. 

An estimated 50 million family caregivers nationwide provide at least $306 billion in uncompensated services, This amount is comparable to Medicare spending in 2004 and is more than twice what is spent nationwide on nursing homes and paid home care combined. Family caregivers may suffer from physical, emotional, and financial problems that impede their ability to give care now and support their own care needs in the future. Without attention to their needs, their ability to continue providing care may well be jeopardized.

Respite provides a break for the family caregiver, which may prove beneficial to the health of the caregiver. A recent survey showed that 60% of family caregivers age 19-64 reported that they were experiencing fair or poor health, one or more chronic conditions, or a disability , when compared with only 33% of non caregivers surveyed.

Respite services are not intended to be provided on a continuous, long-term basis.  Unlike a program of daily services, those would enable an unpaid caregiver to work elsewhere full-time.  For that level of care, community living support, including the services of paid support or training staff, should be utilized. These services should never be substitute for community living support or other services of paid support/training staff.

It is acceptable for a patient to receive respite services in the appropriate settings. Respite care may be provided in the patient’s home or place of primary residence. It may also be provided in either a licensed family foster care home or state approved facility that is not a private residence. This can include either a group home or licensed respite care facility. Another option is the home of a friend or relative chosen by the beneficiary and members of the care giving team. 

There are several settings in which respite services may not be provided. These include day program settings, or structured medical facilities including Intermediate Care Facilities for Individuals with Mental Retardation, nursing homes, or hospitals. Respite services are not allowed to be provided by parent of a minor beneficiary receiving the service, a spouse of the beneficiary serviced, a beneficiary’s guardian or an unpaid primary care giver. As part of the services the cost of room and board must not be included as part of the respite care unless they are provided as part of the respite services while in a facility that is not a private residence.

Respite services are not intended to replace or circumvent any other service providers in the health care delivery model. A personal care attendant would be specifically employed to care for a particular person. They would go to their home or accompany them going to work, college, or wherever they need to go. They may be assisting the family/primary caregivers, or they may be assisting a disabled person who lives alone. They often have specific tasks during their time with the person they are there to help, such as assistance with bathing and dressing. They may have a number of people that they visit and will travel between various addresses in their working day or week.

Respite services offer care to children or adults in order to give their primary caregivers, usually their family, a break. This may be for the day, or overnight, or for a period of a few nights or a few weeks. It enables the caregivers to rest, have a holiday, do something that would be difficult or impossible with their family member who has special needs around.

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