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The SC Respite Coalition is the only entity
in the state committed to addressing the needs for respite across the
lifespan for all persons caring for a child or adult who has special
needs. The Respite Coalition was incorporated in the summer of 2001 and
is the result of the vision of over 30 organizations. Lead organizations
in the development of the Respite Coalition have been Family Connection of
SC, Inc., the Center for Disability Resources at the USC School of
Medicine, and the Institute for Families in Society at the University of
South Carolina.
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The SCRC provides information about respite to
families and professionals, strives to increase awareness among family
members, policy makers and the general public, and ultimately increase
respite all over the state. Eventually, we hope to be able to offer
vouchers and/or respite providers for families, especially those who fall
through the cracks for what little subsidized respite is available.
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Respite is temporary relief from
caregiving and the need most frequently identified by family caregivers of
all ages. Respite is essential to family preservation for many families
and it plays a significant role in prevention of abuse and
institutionalization. In South Carolina there are inadequate respite
resources to meet the needs of most families. It is significantly
underfunded for those who need subsidy; and it is difficult, if not
impossible, in some places and for certain populations with complicated
physical and mental conditions, to find trained respite providers.
National studies show that one-fourth
of all American families are involved in providing care to someone 50 or
older, which, of course, does not include those caring for someone
younger. Even if only a fraction of families urgently need respite due to
full time care giving, this clearly affects a significant number. The
prevalence of Alzheimer’s disease and other dementias, as the 85+
population grows by 25% every 10 years, is outpacing families’ abilities
to cope without respite services.
We know that 1 in 4 of South
Carolina’s children have been diagnosed with one or more special needs.
These children have a longer lifespan than ever before, so families
provide care for many more years, often 24 hours a day, 7 days a week.
South Carolina spent $40 million in 2001, up from $34 million in 1998, to
remove children with emotional disorders from their family homes during a
mental health crisis. Yet almost no funding is available for these
families to receive respite services that might prevent family disruption
and the expense of Foster Care. And if the loved one is in midlife, not
yet in need of institutionalization or hospice care, with M.S. or A.L.S.
(Lou Gehrig’s disease), for example, the family caregiver just manages
largely alone.
Respite is a cost effective service
that enables families to keep loved ones at home, where they want to keep
them and where loved ones want to be, for much longer. Frankly, the
alternative – institutionalization – is simply not affordable for our
society. We must create services to help families cope!
Because the needs
of caregivers exceed what government can do alone, the Respite Coalition
has worked tirelessly for the past four years to mobilize faith
communities to address the respite needs of families in their own
congregations. Families trust their own family members first to take care
of loved ones and it is our belief that one’s faith community is
next best to kin.
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