RESPITE-PALLIATIVE-AND-END-OF-LIFE-CARE-FOR-CHILDREN-WITH-LIFE-LIMITING-A.PDF

Last updated: 04/04/2018
General information
Organization Ryan House
Contact First name Tracy
Contact Last name Leonard-Warner
Contact e-mail tleonardwarner@ryanhouse.org
Contact phone number 602-200-0767
Address
Street 110 W. Merrell St., First Floor
City Phoenix
State AZ
ZIP Code 85013
From what tribe is the Fort McDowell Yavapai Nation
organization requesting the
grant?
Total grant amount request 15,000
1 / 1



April 5, 2018
Ms. Verlene Enos
Tribal Secretary
Fort McDowell Yavapai Nation Tribal Council
P.O. Box 17779, Fountain Hills, AZ 85269
Prop 202 Grant Application
Primary Organization Contact:
Tracy Leonard-Warner, MHI, MT-BC
Executive Director
Ryan House
110 W. Merrell Street, First Floor
Phoenix, AZ 85013
602-200-0767 – Office; 602-695-7632 – Mobile
tleonardwarner@ryanhouse.org
https://www.ryanhouse.org
Narrative:
1. Ryan House’s is seeking $15,000 in funding to support its Respite, Palliative, and End-of-Life Care Program
for Children with Life-Limiting and Terminal Conditions. This is a continuing program.
2. Purpose of the program and how it meets Fort McDowell’s funding priority (health): Ryan House’s program
in need of funding is our Respite, Palliative, and End-of-Life Care for Children with Life-Limiting and Terminal
Conditions Program.
Respite Care (Health): Respite care is a gift of time; it consists of short-term, overnight stays that relieve families
of the daily stress of home care. These stays at Ryan House are designed to give families a break from the 24-
hour-a-day needs of their child. They allow parents to reconnect with one another and give siblings rare time
alone with their parents. Critically, this care provides the child with a comfortable, away-from-home experience,
which is one way of normalizing their life, and it offers an opportunity to make friends and participate in
activities not otherwise available to them. Families can stay at Ryan House with their child in a less active care
role, or the child can stay on their own, knowing that exceptional, world-class care will be provided by trained
medical professionals. Each child can receive up to 28 days (672 hours) of overnight stays at Ryan House per
year, at no cost to the family.
Palliative Care (Health): This care focuses on enhancing quality of life for the child and family, minimizing
suffering, optimizing functions, and providing opportunities for personal growth. Effective management of pain
and other distressing symptoms, together with psycho-social and spiritual care, are of critical importance,
beginning at diagnosis and continuing throughout the course of a child's life. Our skilled and dedicated Care

Team that provides hands-on-care around the clock includes registered nurses, certified nursing assistants,
medical directors – physicians that are experts in the pediatric care of children with special healthcare needs –
social workers, a certified Child Life Specialist, a non-demoninational chaplain, and volunteers. Parents and
siblings have the opportunity to stay overnight in our family suite to be close to their child as well.
End-of-Life Care (Health): Families with a child facing end-of-life receive supportive planning and care consistent
with clinical, cultural, and ethical standards. From diagnosis through end-of-life, Ryan House provides a
comprehensive program of family-centered care including medical, psychological, social and spiritual support
service and therapies. Activities provided include full medical and hospice care, activities to strengthen family
relationships, and activities to enhance their overall quality of life; all end-of-life planning and care is family-
driven and family-focused. Our approach addresses the emotional, spiritual, and social needs of the family while
also providing relief of the symptoms, pain, and stress associated with any serious illness.
3. The need for the program, population targeted, and estimated number of children who will be served by
this grant:
The target population served by our program includes approximately 207 children between the ages of birth and
18, living in Arizona, with life-limiting and terminal conditions. The children we serve suffer from conditions that
cause significant functional impairment and are diagnosed by medical professionals to be irreversible and
terminal. These children are not expected to live into their twenties and require 24/7 medical care. Some are
diagnosed with cancer, and some have suffered tragic accidents or are brought to Ryan House immediately after
birth with undiagnosed genetic conditions. During our last fiscal year:
• 207 children were enrolled in the respite program;
• Top diagnoses of the children served included cerebral palsy, muscular dystrophy, mitochondrial
disease, and brain deformation/trauma;
• 50 children received hospice services; and
• Approximately 50% of children served were male and 50% were female.
In addition, the children receiving Hospice services were: 4% Asian; 32% White; 36% Hispanic; 20% Native
American; 4% Pacific Islander; and 4% Black. The $15,000 requested will serve 100 children. For families who
have a child diagnosed with a life-threatening condition, everyday life is a constant struggle.
4. Partners: Hospice of the Valley. Other entities providing funding and support: Ryan House’s current
contributors include: Thunderbirds Charities, Three Desert Winds Foundation, Season for Sharing, Otto &
Edna Neely Foundation, the Virginia G. Piper Charitable Trust, Ibis Foundation of Arizona, Sundt Foundation,
Kemper & Ethel Marley Foundation, SRPMIC, Gila River Indian Community, Fiesta Bowl Charities, and many
other individual supporters. Ryan House submitted an application to GRIC specifically for end-of-life care.
5. Timetable for implementation of the program: Since we are requesting support for a continuing program,
our timetable starts upon notification of funding from the Fort McDowell Yavapai Nation: September 1,
2018 and ends on August 31, 2019 (12 months).

Ryan House
FY 17-18 Program Budget
Income
Individual / Business 189,398 29%
Corporations 30,747 5%
Foundations 159,741 25%
State Grants 3,054 0%
Special Events 168,600 26%
In-Kind Revenue 73,304 11%
Investment Revenue 19,470 3%
Misc Revenue 321 0%
Total Income $ 644,635 100%
Expenses
Program Staff 534,883 83%
Other Staff 12,385 2%
Facilities 47,765 7%
Volunteers 12,750 2%
Grief Support Supplies 7,450 1%
Activity Supplies 7,700 1%
Technology 3,702 1%
Misc 18,000 3%
Total Expense $ 644,635 100%
Net Income $ -

“It was 5:05 pm on a Friday afternoon when the doctor’s office called and confirmed what I viscerally
knew - our precious baby was confirmed to have CMV infection. And it was a daughter we were
having. I thought I never heard a louder door slam. Every single wish, hope, dream, aspiration and
picture of life with two children- and with a daughter- was behind that locked door of CMV.
Cytomegalovirus, in itself, is not a fatal diagnosis. But combined with severe anemia, heart failure and
hydrop fetalis it is. Diagnosis brought a whirlwind of fast and reactionary decisions in a small window
of time. We were told our baby would not survive by two very good doctors in their field. We promptly
broke our lease and moved to Phoenix to be closer to family to feel their net of support through a
dying child and a grieving child and grieving family.
Finances were tight, but we did it. We spent many weeks researching and talking and networking.
Finding more people like us and more people to help us. We found a nurse who did perinatal palliative
care. We were her second to last clients. This was our first exposure to perinatal palliative care, but we
felt so at home in this space. This space allowed us to care for our daughter in ways we felt
comfortable. Through the nurse and a local mom who I connected with in a grieving group we found
Ryan House and we were swiftly admitted to their perinatal palliative care program. Our new safety
net. We still felt the reverberations of that door being slammed, but Ryan House was there to soften
the blow. We felt home. We didn't have to continue calling funeral homes for the baby that was
kicking and rolling inexplicably in my stomach- Ryan House would do it for us. We didn't have to have

the burden of death, but we now had the empowerment of life - because Ryan House helps take care
of everything. I didn't have to ask any more questions I didn't want to know the answer to because we
had people that knew exactly what to do in the moment it needed done. We just had to be a family.
The day came that baby girl was to join us earthside. She came earlier than scheduled. I felt the edge
of the door of her life creeping closer to being closed each second I spent in labor. The fear was hard.
The emotions were hard. But she came to be with us.
She stayed with us. And suddenly that door wasn't closed, but it was open. Baby girl decided to stay
earthside with us and thrive off of the web of love and support we spent 15 weeks weaving. Her life
had opened that door I spent 15 weeks thinking was closed. She is not the daughter I thought, she is
not the daughter I anticipated. She is more. She has opened a million and one doors with her life, her
journey, her strength and her ability to endeavor. She has pulled us as her family through doors I never
thought possible and we have met life changes in ways I could never conceive without her. Her
diagnosis was not an end that day to life as we thought - it was only a beginning of a wild, amazingly
hard, mostly uphill, but awfully beautiful journey of love and the power of community support.
Without the support of our "community", we would not be where we are today. Without Ryan House,
we would be without the safety and comfort of palliative care and the tools it brings us to care the
best for Corrinne. Without the support of our social worker we found through Ryan House, we
probably would have lost our house due to finances from having a single income family. I can't work
because I have to keep up with the needs of Corrinne through sickness, 15 doctors and 6 therapists
and one hospital admission a month her first 6 months of life. We have an amazing support system
with family and friends but they can't always take our son when our daughter is admitted, making my
husband lose work hours. Without the support system we have, I would not be the advocate I am for
my daughter, my son, my husband and my family. I would not have the empowerment to have a
voice. This journey would be devastatingly bleak if we did not have the key piece to caring for our
daughter- our support community which we have painstakingly pieced together to have the titanium
strength to carry us in the bad and celebrate with us in the good. This life of medically complex special
needs is the starkest of emotional juxtaposition. It is both grief and celebration. Pain and joy. Giving
up and endeavoring. These coupled feelings are experienced at the same time; in almost the same
moment. It's a blessing and a curse. But to us, it is life. It has always and will always be the most open
of doors for us; one we pass through with intention. I'm not sure another door of life could ever be
closed on us because life with our daughter has showed us what infinity is and we can only ever move
forward through the infinity.”

Ryan House Sensory Room