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Respite care is the provision of short-term, temporary
relief to those who are caring for family members who might otherwise
require permanent placement in a facility outside the home.
Respite programs
provide planned short-term and time-limited breaks for families
and other unpaid care givers of children with a developmental
delay and adults with an intellectual disability in order to support
and maintain the primary care giving relationship. Respite also
provides a positive experience for the person receiving care.
The term "short break" is used in some countries to describe respite
care.
In the United
States today 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.
Without this home-care, most of these cared for loved ones would
require permanent placement in institutions or health care facilities.
Even though
many families take great joy in providing care to their loved
ones so that they can remain at home, the physical, emotional
and financial consequences for the family caregiver can be overwhelming
without some support, such as respite. Respite provides the much
needed temporary break from the often exhausting challenges faced
by the family caregiver.
Respite is
the service most often requested by family caregivers, yet it
is in critically short supply, inaccessible, or unaffordable regardless
of the age or disability of the individual needing assistance.
While the focus has been on making sure families have the option
of providing care at home, little attention has been paid to the
needs of the family caregivers who make this possible.
Without respite,
not only can families suffer economically and emotionally, caregivers
themselves may face serious health and social risks as a result
of stress associated with continuous caregiving. Three fifths
of family caregivers age 19-64 surveyed recently by the Commonwealth
Fund reported fair or poor health, one or more chronic conditions,
or a disability, compared with only one-third of non caregivers.
Respite has
been shown to help sustain family caregiver health and wellbeing,
avoid or delay out-of-home placements, and reduce the likelihood
of abuse and neglect. An outcome based evaluation pilot study
show that respite may also reduce the likelihood of divorce and
help sustain marriages.
Models
for Respite
There are
various models for providing respite care including:
- In-home
respite
- Specialized
facility
- Emergency
respite
- Sitter-companion
services
- Therapeutic
adult day care
In-home
respite
In-home care
is popular for obvious reasons. The temporary caregiver comes
to the regular caregiver’s home, and gets to know the care receiver
in his or her normal environment. The temporary caregiver learns
the family routine, where medicines are stored, and the care receiver
is not inconvenienced by transportation and strange environments.
In this model, friends, relatives and paid professionals may be
used. Depending on the state, Medicaid
or Medicare
may be used to help cover costs. Another in-home model will utilize
friends and neighbors as helping hands where the primary caregiver
never leaves the premises but may simply be getting a break so
that they can cook dinner or pay the bills.
Specialized
facility
Another model
uses a specialized, local facility where the care receiver may
stay for a few days or a few weeks. The advantage of this model
is that the specialized facility will probably have better access
to emergency facilities and professional assistance if needed.
Emergency
respite
There may
be the need for respite care on an emergency basis. When using
"planned" emergency care, the caregiver has already identified
a provider or facility to call in case there is an emergency.
Many homecare agencies, adult day care, health centers, and residential
care facilities provide emergency respite care.
Sitter-companion
services
Sitter-companion
services are sometimes provided by local civic groups, the faith
community and other community organizations. A regular sitter-companion
can provide friendly respite care for a few hours, once or twice
a week. Care must be taken to assure that the sitter-companion
is trained in what to do if an emergency occurs while the regular
care-giver is out of the home.
Therapeutic
adult day care
Therapeutic
adult day care may provide respite care during business hours
five days a week.
The
Lifespan Respite Act
Recognizing
this significant contribution and the needs faced by America’s
caregivers, the United
States Congress passed The Lifespan Respite Care Act of
2006 (HR 3248) which was signed into law in December 2006.
The bill was introduced and championed in the US
House of Representatives by Rep. Mike Ferguson and James Langevin
(D-RI). A companion bill in the Senate was cosponsored by Senator
Hillary Clinton (D-NY) and Senator John Warner.
Much of the
success for the passage of this legislation is due to the work
of The Lifespan Respite Task Force which includes a diverse group
of national and state organizations, state respite and crisis
care coalitions; health and community social services; disability,
mental health, education, faith, family caregiving and support
groups; groups from the child advocacy and the aging community;
and abuse and neglect prevention groups.
If and when
the new law is funded, (check progress at the ARCH website) it
will provide funds for states to develop lifespan respite programs
to help families access quality, affordable respite care. Lifespan
respite programs are defined in the Act “as coordinated systems
of accessible, community-based respite care services for family
caregivers of children and adults with special needs.” Specifically,
the law authorizes funds for:
- Development
of state and local lifespan respite programs
- Planned
or emergency respite care services
- Training
and recruitment of respite care workers and volunteers
- Caregiver
training
When the bill
passed the House, Rep. Ferguson, whose own father was a caregiver
for his ill mother for six years said , “Today's action by the
House of Representatives represents not only an important victory
for family caregivers nationwide, but it also sends America's
caregivers a clear message: Your selfless sacrifice is appreciated,
and help is on the way.”
The Lifespan
Respite Care Act of 2006 is based on model state lifespan
respite programs that have successfully addressed all of these
barriers. Three states have enacted legislation to implement lifespan
respite programs (Oregon, Nebraska,
Wisconsin), which establish state
and local infrastructures for developing, providing, coordinating
and improving access to respite for all caregivers, regardless
of age, disability or family situation. Oklahoma
has also implemented a successful lifespan respite program.
Respite
in the US
An estimated
50 million family caregivers nationwide provide at least $306
billion in uncompensated services — an amount comparable to Medicare
spending in 2004 and 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 care
is one of the services that Alzheimer’s caregivers say 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 in 1995 found that as respite use increased, the
probability of nursing home placement decreased significantly
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 replacement costs for employees who quit because of overwhelming
caregiving responsibilities, absenteeism, and workday interruptions.
Caregiver
wellness reduces hospitalizations, doctor visits, work absences
Significant
percentages of family caregivers report physical or mental health
problems due to caregiving. A recent survey of caregivers of children,
adults and the disabled conducted by the National Family Caregivers
Association, found that while 70% of the respondents reported
finding an inner strength they didn’t know they had, 27% reported
having more headaches, 24% reported stomach disorders, 41% more
back pain, 51% more sleeplessness and 61% reported more depression.
Three fifths
of family caregivers age 19-64 surveyed recently by the Commonwealth
Fund reported fair or poor health, one or more chronic conditions,
or a disability, compared with only one-third of non caregivers.
Caregivers reported chronic conditions at nearly twice the rate
of non caregivers (45% to 24%).
A 1999 study
in the Journal
of the American Medical Association found that participants
who were providing care for an elderly individual with a disability
and experiencing caregiver strain had mortality risks that were
63% higher than non caregiving controls.
In an Iowa
survey of parents of children with disabilities, a significant
relationship was demonstrated between the severity of a child’s
disability and their parents missing more work hours than other
employees. They also found that the lack of available respite
care appeared to interfere with parents accepting job opportunities.
Respite
for younger family members with disabilities
Respite has
been shown to improve family functioning, improve satisfaction
with life, enhance the capacity to cope with stress, and improve
attitudes toward the family member with a disability.
In a 1989
US national survey of families of a child with a disability, 74%
reported that respite had made a significant difference in their
ability to provide care at home; 35% of the respite users indicated
that without respite services they would have considered out-of-home-placement
for their family member.
There was
a statistically significant reduction in somatic complaints by
in a study of primary caregivers of children with chronic illnesses,
and a decrease in the number of hospitalization days required
by children, as a direct result of respite care.
Data from
an ongoing research project of the Oklahoma
State University on the effects of respite care found that
the number of hospitalizations, as well as the number of medical
care claims decreased as the number of respite care days increased.
A Massachusetts
social services program designed to provide cost-effective family-centered
respite care for children with complex medical needs found that
for families participating for more than one year, the number
of hospitalizations decreased by 75%, physician visits decreased
by 64%, and antibiotics use decreased by 71%.
An evaluation
of the Iowa Respite Child Care Project
for families parenting a child with developmental disabilities
found that when respite care is used by the families, there is
a statistically significant decrease in foster care placement.
A 1999 study
of Vermont’s then 10-year-old respite
care program for families with children or adolescents with serious
emotional disturbance found that participating families experience
fewer out-of home placements than nonusers and were more optimistic
about their future capabilities to take care of their children.
Results
when caregivers of the elderly use respite
Respite for
the elderly with chronic disabilities in a study group resulted
in fewer hospital admissions for acute medical care than for two
other control groups who received no respite care
Sixty-four
percent of caregivers of the elderly receiving 4 hours of respite
per week, after one year, reported improved physical health. Seventy-eight
percent 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.
Caregivers
of relatives with dementia who use adult day care experience lower
levels of caregiving related stress and better psychological well-being
than a control group not using this service. These differences
were found in both short-term (3 months) and long-term (12 months)
users.
Respite
provided across the lifespan yields positive outcomes
In a 2004
survey conducted by the Oklahoma Respite Resource Network, 88%
of caregivers agreed that respite allowed their loved one to remain
at home, 98% of caregivers stated that respite made them a better
caregiver, 98% of caregivers said respite increased their ability
to provide a less stressful environment, and 79.5% of caregivers
said respite contributed to the stability of their marriage.
When newly
formed, the Nebraska statewide lifespan
respite program conducted a statewide survey of a broad array
of caregivers who had been receiving respite services, and found
that one in four families with children under 21 reported that
they were less likely to place their child in out-of-home care
once respite services were available. In addition, 79% of the
respondents reported decreased stress and 58% reported decreased
isolation.
Data from
an outcome based evaluation pilot study show that respite may
also reduce the likelihood of divorce and help sustain marriages
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