Have you heard of Ryan House? It's an Arizona gem
Think for a moment that your son or daughter, or any child near and dear to you, has been diagnosed with a life-limiting or fatal condition.
It may be cancer, cerebral palsy, congenital heart disorder, trauma or injury.
How would you cope?
Where would you go to find the best care for your child and support for your family?
In Arizona, children with life-limiting conditions and their families come to The Board of Visitors Ryan House, at the corner of First Avenue and Thomas Road in central Phoenix. The first of its kind in Arizona and one of two in the nation, Ryan House is more than a facility; it is an innovative concept at the forefront of pediatric palliative care.
A point of pride for Arizona
Arizona is often criticized for its apparent lack of investment in children and how we treat our most vulnerable residents. All Arizonans should take great pride in being among the first in the nation to embrace the Ryan House concept.
Palliative care is comfort care aimed at improving the quality of life for the child and family.
Especially important with children, it is delivered by an interdisciplinary care team concurrently with curative care and treatments. Palliative care addresses the emotional, spiritual and social needs of the child and family, supports the child and family in establishing goals of care and quality of life discussions, and decreases the fear, isolation and anxiety from diagnosis through end-of-life and beyond.
Phoenix-based Ryan House a haven for families
Healthcare at its best
As a concept, Ryan House represents the best in healthcare — care is coordinated, compassionate, patient-centered and provided across a continuum throughout the trajectory of the child's condition.
It is also cost-effective. Families plan overnight stays at Ryan House, up to 28 days a year, instead of costly crisis visits to emergency rooms for respite and pain management. Like adult palliative care, pediatric palliative care lowers overall medical expenditures.
The demand for this care is growing fast.
Advances in medicine help children with chronic and life-limiting conditions live longer. In the United States, more than 500,000 children are coping with a life-limiting condition every year.
At Ryan House, those children include a young girl with a contagious smile who battles a rare genetic disorder that greatly limits her life. And a happy, resilient and loving boy struggling mightily with terminal illness. Another is a sweet 16-month-old girl diagnosed with a fatal disease.
Since opening our doors in 2010, Ryan House has provided vital care and services to more than 530 Arizona children and families in need, and supported more than 240 children at the end of life. In addition, Ryan House has supported more than 2,000 siblings, parents and grandparents, and countless other extended family members and friends.
Ryan House is not an experiment or trial run. It is a necessity that needs to expand.
Free to families, supported by donors
Today, Ryan House is sustained by community and philanthropic dollars ($2.1 million in fiscal year 2015) and services are provided at no cost to families. We are lucky and grateful to have such a generous community so vested in our mission, and an exceptional care partner in Hospice of the Valley.
There is no reimbursement for the palliative and respite care provided at Ryan House, and the reimbursement for end-of-life care through Medicaid and private insurers is inadequate.
‘She is loved’ - Mother’s Ryan House story
Public and private insurers should support this quality care
It’s time for this to change.
Reimbursement from insurance companies and government agencies for pediatric palliative care will improve care for children with life-limiting conditions, reduce costly hospitalizations and provide quality of life when it matters most.
To find out more about Ryan House, the work we do and how you can help, please visit ryanhouse.org.
Alyssa Crockett is executive director of Ryan House in Phoenix.