The S.C. Respite Coalition
brings people together to develop a coordinated system to address respite
needs, regardless of the age of the care recipient. Thirty states now
have such coalitions.
Lifespan Respite is a
coordinated system of accessible, community-based respite services for
caregivers and individuals regardless of age,
race, ethnicity, special need or
The S.C. Respite Coalition inventories existing respite resources in S.C.
to share widely. Our knowledge about the scope of the unmet need for
across-lifespan respite services is increasing. Respite resource
information is at
A major barrier to respite
care is the lack of qualified and trained providers. We need consistent,
professionally taught training classes for respite care providers in all
parts of the state.
Respite care has been the
need most frequently identified by families of children with special
health care needs. (Plauche Johnson, et al, 2005; Congressman George
Miller, 1994; Family Connection of S.C., 1997-2005; Continuum of
Care,1999-2005, Federation of Families, 2003)
As little as 4 hours of
respite per week has been shown to make significant differences in
caregiver lives. At $10/hour, this can be as little
as $2,080 a year.
Without respite there is
greater likelihood of abuse. A 2001 study conducted in 17 U.S. areas: 11%
of caregivers stated they might have abused their child had they not
received respite services. Ninety-one percent report experiencing less
stress now they have respite services (9/2001, ARCH Network news.)
Without respite, caregivers
burn out and institutionalization may occur. Nursing Home or residential
cost is about $50,000 a year, along with deep personal toll to both care
receiver and caregiver.
The 2000 needs assessment
identified 270,000 children (1 in 4) in S.C. with one or more diagnosed
special needs. Many require care 24 hours/7 days a week with no breaks.
Annually S.C. spends $40 million
state dollars for out of home placements for children and adolescents with
serious emotional disturbance. (Continuum of Care.) There is almost no
preventive respite in mental health in S.C., however the OASIS program at
SC Dept. Mental Health plans to create some.
One in 4 households cares for
someone 50+ (S.C. Olmstead Report, 8/01, National Alliance for Caregiving/AARP,
Family Caregivers provide
an average of care 21 hours/wk; 17% give 40+ hours of care. (Nat’l
Alliance for Caregiving/AARP, 2005)
Of the 62,345 persons in
SC with Alzheimer’s disease or a related dementia, more than 73 percent do
not receive supportive services for the family (1998). Because
Alzheimer’s patients are often cared for by someone who is elderly, there
may be additional complications such as lack of transportation, health
conditions (1999, Center for Family, USC), isolation, modest education,
lack of awareness of resources and hesitation to ask for them.
Of family caregivers who
help someone between 18-49, 23% say the care receiver’s main problem is
mental illness or depression (Nat’l Alliance for Caregiving/AARP, 2005)
Families provide the
majority of care in the U.S. and studies show they want to (Kaye &
Applegate, 1990.) Without respite, caregivers’ own physical and mental
The main sources of respite
in S.C. are South Carolina Department of Disabilities and Special Needs
County Boards and Community Long Term Care, both of which have long
waiting lists. Other: Alzheimer’s Association (Upstate and Palmetto
Chapters), Family Caregiver Support Programs, Family Connection of S.C.,
Inc. respite cooperatives, programs funded by the Alzheimer’s Resource
Coordination Center, the adult care center network, assisted living
facilities, a few long term care facilities, and individual providers,
mostly paid for privately.
Sixty-four percent of caregivers
of the elderly receiving 4 hours of respite per week after one year
reported improved physical health, 78% improved their emotional health,
and 50% cited improvement in the care recipient as well. Forty percent
said they were less likely to institutionalize the care recipient because
of respite (Theis, S.L., et al, 1994).
financial strain. Six in 10 say they spend their own money on the care
recipient – average $261/mo. In a study of caregivers of people 50+
highest spending was for care recipients needing greatest amount of care
and minority caregivers were more likely to have out of pocket expenses
for caregiving than whites (National Alliance for Caregiving & AARP, June
businesses also incur high costs in terms of decreased productivity by
stressed working caregivers. A recent study by MetLife estimates the loss
to U.S. employers to be between $11.4 to $29 billion per year. This
includes replacement costs for employees who quit because of overwhelming
caregiving responsibilities, absenteeism, and workday interruptions.
(Metropolitan Life Insurance Company, 1997)
Respite = Relief
A temporary, intermittent break from caregiving that allows one to return
refreshed and renewed. It can be an hour, a day, a week, a month.
Respite is the number one need identified by family caregivers no matter
what the disability or age of the person needing care.
Respite is still in short supply.
Everyone must be part of the
Respite is an essential service that provides family caregivers
with the relief necessary to:
maintain their own
prevent abuse and
keep marriages intact,
Respite is a
cost-effective service. As few as four hours each week of respite has
been shown to:
costs only $2,080 a year
(using a rate of $10 per hour)
avoid or delay much
more costly nursing home, foster care or other residential care.