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.
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