The JLP is a founding member of Arizona’s and
the Southwest’s first freestanding children’s
palliative care house, providing a community of
support and comfort care for children with
life-limiting conditions and their families.
Ryan House
is a freestanding, small-scale
children's center that will provide a community
of support, emergency, short-term respite and
palliative/hospice care in a home-like setting
to children with life-limiting conditions who
are cared for on a daily basis in their own
homes.
Located at 1st Avenue and Merrill, it will
be an 8 bedroom house, 6 beds for
respite/palliative care and 2 beds for
pediatric hospice. In addition, there will
be four family suites on the 2nd floor.
The
vision for Ryan House comes from Holly and
Jonathan Cottor. The Cottors have made it
their mission to bring this kind of facility
to Arizona in order to help many other
families who devote their lives to caring
for and loving their sick children.
The
model for this Ryan House comes from similar
successful homes in the U.K. and Canada, as
well as the just opened George Mark
Children's House in Oakland. Phoenix's Ryan
House will open in early 2008. |
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THE
NEED FOR PEDIATRIC PALLIATIVE CARE
It is estimated that there are approximately
400,000 children in the United States with a
life-limiting condition. According to the
American Academy of Pediatrics’ Policy Statement
(August 2000), the majority of children who die
in the United States have not had the benefit of
palliative care. The Policy Statement goes on to
describe how children have limited access to
pediatric-specific palliative care and hospice
services. Many families must choose between life
prolonging or palliative care, and between
pediatric and non-pediatric health care
professionals, rather than develop an
individualized treatment plan specific to the
needs of the child and family.
According to the 2001 National Survey of
Children with Special Health Care Needs, 10.71%
or 153.400 of children in Arizona have special
health care needs. Of these, 3500 have
functional or life limiting conditions. Many of
the families report that their child’s health
care greatly and consistently affected their
daily activities. It is estimated that up to 90%
of marriages involving a sick child with a
life-limiting condition will end in divorce¹.
With the odds stacked against them, these
families need support from the time of the
initial diagnosis throughout the life of the
child and bereavement support when the child
dies.
¹ Schiff, 1977
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