RYAN HOUSE APPLICATION GRIC 2017.PDF

Created: 02/08/2017 • Last updated: 03/02/2017
General information
Organization Ryan House
Contact First name Alyssa
Contact Last name Crockett
Contact e-mail acrockett@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 Gila River Indian Community
organization requesting the
grant?
Total grant amount request 50,000
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The Gila River Indian Community offers multi-year awards. If your
organization is requesting a multi-year grant for this project or program
from the Gila River Indian Community, enter the amount to be requested
each year.
Amount
Year 1 (Gila River Indian
50,000
Community Grants Only)
Year 2 (Gila River Indian
Community Grants Only)
Year 3 (Gila River Indian
Community Grants Only)
Year 4 (Gila River Indian
Community Grants Only)
Year 5 (Gila River Indian
Community Grants Only)
2 / 2



Gila River Indian Community Grant Application
Grant Cycle 2017
Cover Sheet
Municipality Information
1. Date of Application: 2/14/2017 (NOTE: Click or use up/down arrow keys to move among fields)
2. Name of City, Town or County: Maricopa County
3. Mayor (City or Town) or Board of Supervisor’s Chairman (County): Denny Barney, Chairman
4. Mailing Address: 301 W. Jefferson, 10th Floor
5. City: Phoenix State: Arizona Zip Code: 85003
6. Acknowledgement of Submission by Authorized Municipality Representative:
Typed Name/Title: Melody Henderson, Administrative Coordinator Signature:
Applicant Information
7. Department/Organization Name: Ryan House
8. Is this a 501c non-profit Organization? No Yes If yes, attach IRS Determination Letter
9. Application Contact Person: Alyssa Crockett Title: Executive Director
10. Phone Number: 602-200-0767
11. Mailing Address: 110 W. Merrell St., First Floor
12. City: Phoenix State: Arizona Zip Code: 85013
13. Email Address: acrockett@ryanhouse.org Website Address: www.ryanhouse.org
Project Information
14. Project Name: End of Life Care for Children at Ryan House
15. Purpose of Grant: End of Life and Hospice Services for Terminally-Ill Children
16. Priority Funding Area Healthcare
17. Annual amount requested $50,000
18. Number of years that funding is 1
requested
19. Total amount requested (annual $50,000
amount x number of years)
20. Has your organization received past Yes; Capital Campaign grant of $500,000 awarded between
funding from GRIC? If yes, list each year November of 2008 – May 2011; $100,000 awarded in 2014.
and amount
21. Geographic area served Maricopa County and throughout Arizona
For Office Use Only:
Data Entry Receipt Evaluation
Outcome  Approval Recommended/Amount $  Denial

Gila River Indian Community Grant Application
Grant Cycle 2017
Narrative
Please structure your proposal to provide the following information in the order indicated. Provide the narrative
in paragraph form in the text field provided. Please be thorough but strive for brevity.
1. Briefly describe the organization’s history, mission and goals.
Ryan House was founded in 2004 by a visionary young Arizona family whose eight month-old son, Ryan, was
diagnosed in 2002 with Spinal Muscular Atrophy and given months to live. With generous investments from the
Gila River Indian Community, the Board of Visitors, Hospice of the Valley, St. Joseph’s Hospital (and other
donors), Ryan House opened its doors in 2010.
The inspiration and model for Ryan House is the first children’s hospice in the world, located in Oxford,
England (Helen House). While living in London, the Cottor family was referred to Helen House after their infant
son was diagnosed with a life-limiting condition. The Cottors’ experience at Helen House convinced them of
the essential need for facility-based, family-centered respite, palliative and end-of-life care. The Cottors
returned to their home state with a passion to establish a similar house for Arizona families, and bring this
unique care model to the United States.
Today, any Arizona child from birth to 18 with a life-limiting or terminal condition who is cared for at home is
eligible for Ryan House services. The children we serve suffer from conditions that cause significant functional
impairment and are diagnosed by physicians to be irreversible and terminal. These children are not expected
to live into their 20’s, and require round-the-clock medical, and basic, care.
Ryan House’s mission is to provide world-class care and programs that embrace children and their families as
they navigate life-limiting and end-of-life journeys.
Our primary goal is to provide a continuum of care to enhance the lives of Arizona’s most medically-fragile
children and their families on the most difficult journey imaginable. The care delivered at Ryan House is
coordinated and seamless for child and family, as we work closely with the child’s primary physician and other
care providers. Our secondary goal is to support the entire family to help the family remain intact, and even
thrive, during the challenge of caring for their sick child, and their child’s death.
Ryan House is a lifeline for hundreds of families in Arizona, and our programs would not be possible without
the Gila River Indian Community’s founding support. We are forever grateful for your generosity and passion
for our mission.
2. If the applying organization is non-municipal or a non-profit 501c, please describe your relationship with
Arizona municipalities including past and present support, whether it be through partnerships,
collaborations, in-kind contributions, grants, tax-based funding or other. Describe the supporting
municipality’s role in this project. If the applying organization is a municipality governmental sub-
division please enter the text “Not applicable.”
Ryan House has had positive, collaborative relationships with many cities such as the City of
Phoenix, the City of Scottsdale, and also the state, since our founding. We have received
funding from the City of Phoenix, and the City of Scottsdale has accepted Gila River Indian

Gila River Indian Community Grant Application
Grant Cycle 2017
Community funds previously on our behalf. This year, we are applying through Maricopa
County, as 85% of children we serve are Maricopa County residents. We are grateful for the
opportunity to apply through the County.
3. Describe the proposed project and planned goals and activities.
Ryan House is seeking grant funding to support our End-of-Life Care Program for medically-fragile children
with terminal illnesses at Ryan House. 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. 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.
Children served (ages birth through 18) typically suffer from approximately 75 different diagnoses, including:
blood disorders, various cancers, congenital abnormalities and syndromes, neuro-degenerative disorders,
cycstic fibrosis, cardio-pulmonary illnesses, consequences of tragic accidents, such as near drownings and car
crashes, shaken baby syndrome, muscular dystrophy, brain defects, undiagnosed genetic conditions, and
more. At Ryan House, we wrap our arms and hearts around each one of these children and their families to
help them navigate the unimaginable journey of losing their child.
This critical program at Ryan House is the only pediatric end-of-life and hospice program of its kind in the
entire state of Arizona and encompasses supportive planning and care consistent with clinical, cultural, and
ethical standards of each family served. This program will serve approximately 50-60 children in 2017-2018;
last year, 56 children received 300 days of End-of-Life Care at Ryan House.
Members of the Ryan House Care Team provide parents, guardians and/or siblings with long-term support
systems through the child’s end of life and beyond. With the care provided by our prestigious care partners and
highly-trained staff, we are able to foster a loving community that offers ongoing support and compassion from
diagnosis to end-of-life. We provide therapies for children, such as art, music, and hydro. Our Story of Me
room provides our children with the chance to tell their “story of me” using various media technologies and
therapeutic play. The room provides opportunities for families to document the story of their child’s life prior to
their death. It provides a state-of-the-art multimedia experience that allows Ryan House children to capture
memories and promote healthy communication with their entire family; the room helps capture the child’s
journey- from diagnosis through end-of-life.
We also provide bereavement care, which provides support to families in a number of ways, offering a
personalized tile in Ryan House’s Memorial Garden, a Treasured Memories bereavement box for families, on-
site support groups and family counseling.

Gila River Indian Community Grant Application
Grant Cycle 2017
Far too many days end with tears as we comfort families struggling with their child’s condition and premature
death. With funding from the Gila River Indian Community, we will continue to provide world-class care and
services to medically-fragile children nearing end of life and their families as they navigate the unimaginable.
4. Describe how the proposed project satisfies one or more of the priority funding areas identified by the
Gila River Indian Community.
This project aligns with, and satisfies the Gila River Indian Community’s “Healthcare” funding area by
providing world-class care for children with life-limiting and terminal illnesses. While at Ryan House, our
interdisciplinary care team assumes full medical care of each child throughout their stay, while they
have unique opportunities to maximize functioning, receive pain relief, and significantly increase their
quality of life. Without Ryan House, children would suffer, medical costs for families and the community
would significantly increase, and families would crumble, facing life-long and devastating effects.
5. Identify the needs/problems to be addressed, target population and number of people to be served by
the project.
Caring for dying children and their families can be challenging and stressful. It is difficult to acknowledge that a
child is dying and will not live a normal lifespan. Clinicians share many of the same stresses that the child’s
family members experience. The strain, disruption, pressure, and depletion associated with such stress
require significant personal and professional efforts to adapt and achieve balance. Many pediatric patients still
die in the hospital setting where the focus is on diagnosing, curing, and prolonging life. Life-saving efforts are
usually common when the patient is a child. When working with the dying, these skills are irrelevant and can
lead to potential for conflict in goals, values, interests, and frames of references.
Sixty percent of caregivers say caregiving limits the amount of time they spend with other family and friends.
Parents often have health issues themselves due to prolonged stress and fatigue
(http://caregiveraction.org/resources/caregiverstatistics). Often family members cut work hours or give up work
entirely to care for the child, losing the benefits they so desperately need. Divorce rates for these families are
currently at 90%.
In addition to accidents, congenital and chromosomal abnormalities are leading causes of death for children
ages 1-4 and cancer is now a leading cause of death for children ages 5-14
(https://medlineplus.gov/ency/article/001915.htm). Every day, 43 children are diagnosed with cancer and 12%
of children diagnosed with cancer do not survive (http://curesearch.org/ChildhoodCancerStatistics).
For children facing end-of-life in Arizona, Ryan House is the only place that provides pediatric end-of-life and
hospice care for medically-fragile children – there is nowhere else to turn. At Ryan House, our goal is to ease
each child’s pain and suffering, and to provide the best quality of life - through their end of life. Our home-like
environment provides a safe and comfortable place for families to be embraced by our Care Team while they
endure the unbearable.
Our goal is to enhance the lives of children with life-threatening illnesses while supporting the entire family.
This goal directly aligns with the Ryan House mission of embracing all children and their families as they
navigate life-limiting or end-of-life journeys. Ryan House offers a new, innovative, and cost-effective healthcare

Gila River Indian Community Grant Application
Grant Cycle 2017
delivery model for children who are terminally ill; it improves quality of life and serves as an alternative to costly
emergency room and hospital use.
This program is desperately needed because the pediatric end-of-life and hospice care services and programs
of Ryan House are not duplicated anywhere else. Ryan House is the only organization of its kind in Arizona
and the entire Southwest, and is one of only two of its kind throughout the country. Furthermore, the financial
burden related to costly medical treatments and care often results in the loss of jobs, homes and even
bankruptcy; therefore, all services are provided free of charge to families.
Finally, the need for this program can also be demonstrated through the stories of the children and families we
serve. Please find one such story below.
“Mom, please take me to Ryan House.”
Fifteen year old Jazmin from Tolleson loved to play soccer. It was her favorite sport and she was good at
it. One January day, Jazmin told her mom, Sylvia, that she wanted to quit playing -- she was just too
tired. Later that year, Jazmin was diagnosed with stomach cancer and was given six months to live.
Devastation set it. Jazmin and her family had major decisions to make. Should she go through
chemotherapy? Should she have major surgery to remove key organs? This surgery on her frail body could
result in kidney failure, deafness and blindness. Doctors said she could live another year or two at the most.
Jazmin made her decision. She wanted to take the days she had to run, and she wanted to swim in the ocean.
In the fall Jazmin told her mom, “It’s time to go to Ryan House.”
It was her sister’s birthday shortly after Jazmin arrived and Ryan House helped the family celebrate. They
made it a pool party so Jazmin could swim. That night Ryan House brought the ocean to Jazmin. The family
swam together in the hydrotherapy pool. It was magical.
Jazmin’s family visited her and cooked in the S’Mores Café as if it were their own kitchen. Jazmin and her
friends had sleepovers and ordered pizza. Everyone was peaceful. Everyone was comfortable.
Jazmin recorded legacy videos in the “Story of Me” room for her mom and dad. She instructed the staff to give
these videos to her parents after she died. The staff created a memory book for visitors to write their memories
of Jazmin during this last stay at Ryan House.
Jazmin died peacefully, surrounded by her friends and family.
“Ryan House is a true gift,” says Sylvia. “We were able to treasure our last days and moments with Jazmin.”
Target population: any Arizona child from birth through 18 with a terminal condition who is cared for at home is
eligible for Ryan House’s End-of-Life services. The approximate number to be served by this project over the
grant term is 50-60 children.
6. Define the project as a new or continuing program.

Gila River Indian Community Grant Application
Grant Cycle 2017
End-of-life care at Ryan House is a continuing program. End-of-life care is provided at Ryan
House 24 hours per day, 365 days per year.
7. Provide a brief timeline including start and finish dates. Indicate if the timeline is flexible.
The timeline for this program is ongoing; it takes place and serves children 365 days per year.
End-of-Life care for children begins when they enter Ryan House and ends after each child’s
passing. We do, however, provide bereavement services to help families through the grieving
process – once a family is a part of Ryan House, they are always a part of Ryan House. Grant
funds would be used during Ryan House’s 17/18 fiscal year (10/1/2017 – 9/30/2018).
8. Identify other organizations, partners or funders participating in the project and their roles.
Ryan House uses a collaborative, team approach to care delivery and operates in partnership with
Hospice of the Valley to provide a full circle of care to children and families beyond its walls. Shared
facilities and operations enable both organizations to benefit from considerable cost savings, allowing
more funds to be spent on direct services. Ryan House also partners with hospitals, including Phoenix
Children’s Hospital, and other Arizona organizations that serve children with life-limiting and terminal
conditions, such as Make-A-Wish Arizona. These partnerships ensure that the unique and
individualized needs of Ryan House children and families are met. Make-A-Wish Arizona and Ryan
House also refer clients to one another for services; the children Ryan House cares for qualify for
wishes, and some of the children served by Make-A-Wish Arizona qualify for stays at Ryan House.
Furthermore, two of the three Medical Directors for Ryan House children lead the palliative care
program at Phoenix Children’s Hospital, and both are highly-regarded specialists in the emerging field of
pediatric palliative care.
9. Would you be able to implement the proposed plan if your organization received partial funding for this
project?
If partial funding was received, we would be able to implement the program, but may have to serve
fewer children with terminal illnesses as a result.
10. Describe your plan for project sustainability beyond the grant period. If this is a program/project
previously funded by the Gila River Indian Community describe efforts made towards the previously
described sustainability plan.
Ryan House has successfully supported End-of-Life care since opening its doors in 2010. We plan to
continue to support these activities through our aggressive fundraising program that includes corporate
and foundation grants, individual donations, workplace giving campaigns, third-party events, and three
signature special events. Our organization remains fiscally sound; we are grateful and proud to note
that we are gaining more supporters who believe in our mission and programs each year.

Gila River Indian Community Grant Application
Grant Cycle 2017
As a part of our efforts to diversify revenue sources, a new Reimbursement Committee is also reaching
out to state lawmakers and insurance industry experts to advocate for Ryan House services. Ryan
House is also working to expand and strengthen its Board of Directors and committees, and to further
offset expenses by increasing volunteer staff support and in-kind donations of goods and services.
11. Describe your plan to document progress and results.
The results of our End-of-Life Program are documented and measured through case
management files, medical records, feedback from children and siblings, staff observation and
anonymous parent surveys. In our most recent program evaluation conducted by Arizona State
University (May of 2016), success of this program and the positive effects of services on
children and their families were indicated through the results/outcomes below.
• Eighty-one percent of families said that as a result of Ryan House services, their family
experienced less stress, anxiety, and exhaustion.
• Sixty-seven percent of parents said that their relationship with their spouse or significant other
improved.
• Twenty-four percent of parents agreed that Ryan House decreased the need for hospitalization
and/or emergency room trips, saving their family and the community countless dollars.
We anticipate that the outcomes for this grant will be similar to the ones outlined above during
this grant term. Furthermore, qualitative results were communicated to us through a
parent/guardian survey as well. Quotes from parents are below.
• “My family feels like we have extended family and support. Ryan House isn’t just a place for
respite. It’s a place that supports our family in all aspects – mentally, physically, and spiritually.”
• “There is no other pediatric respite/hospice care option available, period.”
• “Ryan House is a heaven-sent place for families.”
12. Indicate any application to and/or awards made by a tribe other than the Gila River Indian Community
for state shared revenues for this and any other project for the past five (5) years. If this information is
included in a separate attachment, please indicate that here.
Ryan House has applied for and received funding from the Salt River-Pima Maricopa Indian Community
specifically for our Sponsor-A-Stay Respite Program for the last 5 years. Awards are as follows:
2016: $75,000
2015: $75,000
2014: $75,000
2013: $175,000
2012: $100,000

Gila River Indian Community Grant Application
Grant Cycle 2017
Ryan House plans to apply for funds for that program again in 2017 if invited.
In 2015, Ryan House applied to Tohono O’Odham for the Sponsor-A-Stay Program for $50,000. This request
was declined.
In 2012 and 2013 Ryan House applied for $10,000 from the Ft. McDowell Yavapai Nation for our Sponsor-A-
Stay Program. Both requests were awarded. We applied for $20,000 for our Child Life Program in 2014 and
2015; both requests were declined.

Gila River Indian Community Grant Application
Grant Cycle 2017
Project Budget
Budget Period: 10/1/2017 – 9/30/2018
For each budget item listed here please provide a narrative description on the following Project Budget Detail
page.
Proposed Budget Expense Amount Amount In Kind Total Budget
(list each budget item) requested from requested or contributions
GRIC secured from
other funders
1. Program Salaries $37,000 $59,355 $0 $96,355
2. Facility Costs $2,650 $6,608 $0 $9,258
3. Volunteer Training $500 $780 $0 $1,280
4. Grief Support Supplies $9,500 $2,254 $0 $11,754
5. Program Activity Supplies $350 $272 $0 $622
6. Technology Costs $0 $897 $0 $897
7. Miscellaneous $0 $3,974 $0 $3,974
8. Program Administrative Support $0 $2,744 $0 $2,744
9. Click here to enter text. $0 $0 $0 $0
10. Click here to enter text. $0 $0 $0 $0
11. Click here to enter text. $0 $0 $0 $0
12. Click here to enter text. $0 $0 $0 $0
13. Click here to enter text. $0 $0 $0 $0
14. Click here to enter text. $0 $0 $0 $0
15. Click here to enter text. $0 $0 $0 $0
16. Click here to enter text. $0 $0 $0 $0
17. Click here to enter text. $0 $0 $0 $0
Total Budget $50,000 $76,884 $0 $126,884

Gila River Indian Community Grant Application
Grant Cycle 2017
Project Budget Detail
Please provide a narrative description for each of the project budget items listed on the previous page. Include
the dollar figure and how it was derived.
1. Program Salaries: This line item totals $96,355 and it includes a portion of the cost of our Child Life
Specialist, Certified Nursing Assistants, 2 Volunteer Coordinators, Nursing Staff, and applicable employee
taxes and benefits.
2. Facility Costs: The total cost for this line item is $9,258 and includes a portion of our occupancy costs and
$1,200 for meals.
3. Volunteer Training: This line item includes training costs for volunteers that work with medically-fragile
children and their families in this program. The total cost for this line item is $1,280.
4. Grief Support Supplies: This line item totals $11,754 and includes bereavement supplies.
5. Program Activity Supplies: This line item totals $622 and includes costs for life-enhancing therapeutic
activities (i.e. pool maintenance and supplies, child/family activities and events, supplies for The Story of Me
room, child life enhancement costs, and additional activity and educational supplies).
6. Technology Costs: The total cost for this line item is $897 and includes telecommunications and technology
costs.
7. Miscellaneous: This line item totals $3,974 and includes costs paid to Hospice of the Valley and other
miscellaneous program supplies.
8. Program Administrative Support: This line item includes program support salaries and their employee
related expenses.
9. Click here to enter text.
10. Click here to enter text.
11. Click here to enter text.
12. Click here to enter text.
13. Click here to enter text.
14. Click here to enter text.

Gila River Indian Community Grant Application
Grant Cycle 2017
15. Click here to enter text.
16. Click here to enter text.
17. Click here to enter text.
Other explanation: Click here to enter text.