RYAN HOUSE.PDF

Gila River Indian Community Grant Application
Municipality Information
Date of Application:
Name of City, Town or County: Maricopa County
Mayor or Board of Supervisor's Chairman: Andy Kunasek
Mailing Address: Maricopa County Government Relations
City: Phoenix State: AZ Zip Code: 85003
Department/Non-Profit Information
Department or Organization Name: Ryan House
Mailing Address: 110 W. Merrell St., 1 st Floor City: Phoenix State: AZ Zip Code: 85013
Contact Person*: Jule Bank Title: Executive Director
Phone Number: 602-200-0767 E-mail Address: jbank@ryanhouse.org
*The individual listed here will be our direct point of contact for grant-related questions or requests for information.
Duplicates of all grant correspondence will be sent to the contact person.
Grant Information
Program or Project Name: Sponsor-A-Stay
Purpose of Grant: To provide respite care for children with life-threatening conditions who
require 24-hour care.
Beginning and ending dates of Program or Project:10/1/2013 to 9/30/2014
Amount Requested: $100,000.00 Total Project Cost: $1,724,161.00
O Multi-year Request — If checked, # of years requested: Amount/year:
Priority Funding Area:
O Economic Development El Education [E] Healthcare El Public Safety 0 Transportation
Geographic Area Served:Statewide
Signature:
Mayor OR Chairman BOS: Date:
Typed Name and Title: Andy Kunasek
Rev. 2/2012

*
The Board of Visitors
RYIAnise.
Proposal to the Gila River Indian Community
A. Narrative

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17.14...t* Trift.
R House.
Proposal to the
Gila River Indian Community
1. Purpose of Grant
a) Describe the proposed program or project.
The mission of Ryan House is to provide palliative and respite care to children in Arizona with
life-threatening conditions and, as needed, end-of-life care. Ryan House is a new, growing
concept — it is also the only facility of its kind in the Southwest and one of just two in the U.S.
The purpose of Ryan House is to ease the burden on children with life-limiting conditions and
their families by providing a safe and comfortable place where treatments and therapies are
administered by a skilled staff, allowing families to focus on...being families. Although this
eight-bedroom house looks like any other large home to the casual observer, it contains all the
modern medical technology needed to provide care and supportive therapies to replicate the care
being provided at home. Services include:
Overnight Respite Stays: These stays 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. Each child can receive
up to 28 days (672 hours) of overnight stays per year.
Pediatric Palliative Care: Palliative care is an integral part of all Ryan House services. 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.
Family Support: All families receive ongoing on and off-site support ranging from resource and
referral information, to emotional support for parents and siblings. Included are anticipatory grief
and bereavement care, which assist the child (as appropriate), siblings, parents and extended
family members in affirming and appreciating how their love for each other provides courage to
face their challenges and move forward while the child is living, during end-of-life transition,
and after the child's death.
End-of-Life Care
Families with a child facing end -of-life receive supportive planning and care consistent with
clinical, cultural, and ethical standards.
Life-enhancing Therapies: These activities help I) alleviate the isolation, pain and fear children
suffer when trying to cope with their diagnosis, and 2) improve overall quality-of-life and well-
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Ryan House
Proposal to the Gila River Indian Community cont.
being by providing an opportunity to experience new sensations, develop skills and gain
confidence. Activities include: art, music, pet, sensory and hydro therapies. Each child will
receive at least one life-enhancing therapeutic activity during a 24-hour stay.
b) Describe how the proposed program or project satisfies one or more of the "priority
areas" identified by the Gila River Indian Community.
Ryan House primarily meets the Gila River Indian Community health care services priority by
providing respite, palliative and end-of-life care for children with life-threatening conditions,
including all medical care necessary during their stay. Ryan House also provides cost savings for
the community as a whole. Before Ryan House existed, families at their breaking point often
utilized emergency rooms or hospitals when they were in need of respite services. These stays
were often medically unnecessary and costly for the state. Now, desperate families have an
option to unnecessary hospitalization.
c) Identify the needs/problems to be addressed, target population and number of people to
be served by the project.
For families who have a child diagnosed with a life-threatening condition, everyday life is a
challenge. From sunrise to sunset, and often throughout the night, parents provide care for their
terminally ill child while simultaneously trying to manage a household, a marriage, other
children and a job. The constant care that parents provide can include weekly medical
appointments, daily administration of medication, and hourly suctioning of a trach tube, all
without a moment to rest.
The stress that accompanies this type of medical condition, for both on the terminally-ill child
and the caregiving family, is immense. Many families fall apart due to a lack of support,
understanding and time-off from work; divorce rates are high and up to 75% of siblings in the
family develop academic, emotional and behavioral difficulties. According to the Journal of
Clinical Nursing, 42% of these families reported that they receive no help from family and
friends.
For children facing end-of-life, the needs are very different from those of older adults who have
already lived a full life, and most traditional care giving organizations are not set up to meet
those needs. Among the most important — children still need an opportunity to be children.
When it comes to palliative care (relief of pain and suffering), the American Academy of
Pediatrics states the goal is to add life to the child's years, not simply years to the child's life.
All services are provided free of charge to families and Ryan House raises 100% of the funding
needed. The financial burden related to costly treatments often results in the loss of jobs, homes
and even bankruptcy. Medicaid and traditional medical insurance provide no reimbursement for
third-party respite care such as that provided by Ryan House,
Ryan House is inspired by the Cottor Family whose son, Ryan, was diagnosed at only six months
of age with the life-threatening condition Spinal Muscular Atrophy, while they were living in
England in 2001. Ryan House was created in 2010 after their return to the U.S., when the family
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Ryan House
Proposal to the Gila River Indian Community cont.
discovered that that the type of respite and palliative care families like theirs desperately need,
was not available here.
In fiscal year 2013/2014 Ryan House anticipates serving 250 children and their families. Any
child between the age of birth and 16, living in Arizona with a life-threatening condition and
cared for at home, is eligible for services. The children served 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 to see their twenties and require round-the-
clock medical care. Some may be diagnosed with cancer, have suffered tragic accidents or are
brought to Ryan House almost immediately after birth with undiagnosed genetic conditions.
The range of circumstances is great and house guests come from all backgrounds, some
travelling from across the state. Approximately 85% reside in Maricopa County. Ryan House
welcomes families from underserved and low-income communities and it is estimated that 5,000
families in Arizona may be eligible for services.
The following story demonstrates how Ryan House helps to change lives.
Anish's Story:
Anish was born with 3Q Deletion Syndrome, a rare chromosomal disorder that causes various
abnormalities. He has an undersized head, a cleft palate, uses a gastronomy tube and suffers from
respiratory complications. Now six years old, he feels right at home when he visits Ryan House,
and his mother, Gloria, couldn't be happier.
Anish first came to Ryan House when his parents took a three-week trip to India to visit family.
It was a tough decision to leave him, but they were worried about taking him to a place where the
medicine was not advanced enough to meet his needs. "I felt guilty leaving him, but I knew he
was being cared for really well at Ryan House," Gloria explained. "Anish spent one week at
Ryan House, then my brother took care of him for a week and then he went back to Ryan House.
The entire time he was there I was getting updates from the Care Team about how he was doing.
For someone to give my son attention like what he receives at Ryan House, it is just so awesome.
It's the best thing for parents, like me, who have kids that are sick."
d) Describe the project goals and objectives, and your plan to meet them.
Our goal is to provide a continuum of coordinated care to enhance the lives of children with life-
limiting conditions. Secondarily, we support the entire family to help them remain intact and
even thrive during the process of caring for a child with a life-threatening illness.
Objectives include providing respite care to offer families a reprieve from the 24/7 care of their
child; palliative care to improve the child's quality of life, minimize suffering, optimize
functions and provide opportunities for personal growth; and end-of-life-care to offer families a
sanctuary of support consistent with clinical, cultural and ethical standards.
The effect of respite care on families is gathered through a recently-implemented anonymous
parent survey and the results show that the program has an overwhelmingly positive impact on
families. Specific results include:
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Ryan House
Proposal to the Gila River Indian Community cont.
• Nearly 90% of families said that respite stays at Ryan House improved the quality of life
for their entire family
• 84% of families agreed that respite strengthened their overall family relationships
• 72% reported that their family developed new friendships (i.e. support system) with other
families and children at Ryan House
• 83% reported that respite lowered their level of stress
• An overwhelming 100% of families responded that their child participates in meaningful
activities at Ryan House
We anticipate similar results as we provide 250 children and families with respite stays, family
support services, palliative care, end-of-life care, and life-enhancing therapies in the coming
year.
e) Define the project as a new or continuing program
Ryan House has been in existence since 2010, thanks in part to capital support from the Gila
River Indian Community. Now in its third year, the organization has expanded the number of
children served and is operating at full capacity. During our first year of operations, Ryan House
only used four of its eight available bedrooms on a regular basis. This was based on a strategic
decision designed to allow the Care Team to gain experience in providing this unique type of
care, and to ensure that fundraising efforts could sustain the program.
After a successful first year of operations and increasing waiting lists for services on weekends,
we determined that it was time to expand to the full eight bedroom capacity. Again, thanks in
part to the Gila River Indian Community we were able to accomplish this.
f) Identify other organizations, partners or funders participating in the project and their
roles.
Ryan House operates in partnership with Hospice of the Valley to provide a full circle of care to
children and families. The partnership allows the organization to follow a family closely
throughout the child's journey, beginning at diagnosis by providing palliative care, either in-
home through Hospice of the Valley or at Ryan House, respite care at Ryan House and end-of-
life care, also at Ryan House. Hospice of the Valley, under contract with Ryan House, handles
the medical component of care.
The Ryan House partnership with Phoenix Children's Hospital includes shared staff
(pediatricians and a social worker) and shared research projects. Other collaborators include
Make-a-Wish Foundation and the Foundation for the Blind as part of the organization's effort to
ensure that the needs of children and families are met.
g) 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/or any other projects/programs.
The organization applied for $10,000 from the Fort McDowell Yavapai Nation to help support Life-
enhancing Therapies. These therapies are one of the services provided by Ryan House under
Sponsor-A-Stay; total costs far exceed the amount requested from either organization. Should Ryan
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Ryan House
Proposal to the Gila River Indian Community cont.
House receive an invitation from the Salt River-Pima Maricopa Indian Community, we will apply
for continued support.
h) Provide a timetable for implementation
Sponsor-A-Stay is an ongoing program. Services will take place during fiscal year 13/14
(October 1, 2013 — September 30, 2014).
i) Identify long-term funding resources or project sustainability.
Now in its third year of operations, Ryan House is transitioning to the next developmental phase
and addressing questions related to longer term growth and sustainability. A strategic planning
session scheduled in early 2013 addressed these questions and solutions, including funding for
Sponsor-A-Stay.
Currently Ryan House raises its entire $2 million budget and will continue its successful
fundraising efforts to support programming. As part of a diversification plan, the organization is
working to limit time-consuming special events and increase donations from individuals. We are
also pursing government grants. Our recent $60,000 government contract from the Arizona
Department of Health Services, Office of Children with Special Health Care Needs, has been
renewed for the next three years, assuming funding remains available.
Respite care is the primary service requested of Ryan House. Insurance providers, including
Medicaid, do not reimburse families for respite care at Ryan House; therefore, all costs are
covered through fundraising efforts. Although we anticipate that these efforts will continue to be
very successful, the organization also plans to broaden the dialog we have begun with insurance
providers with the goal of having respite care treated as a service that is reimbursed by private
and public insurance providers.
2. Reports
Describe your plan to document progress and results. Interim and final reports will be
required for every grant awarded.
Ryan House measures the success of services through the maintenance of detailed records for
children who stay at the house. Information on respite and end-of-life services is gathered by the
Care Team on each child and family. Records are maintained on usage days, services provided
and therapies utilized. Parent/caregiver satisfaction is measured via an anonymous survey.
Results are compiled and used to make program improvements, as needed.
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The BoatId of Visitors
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RYitn)use.
Proposal to the Gila River Indian Community
B. Attachments

77,r Bard of
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Proposal to the Gila River Indian Community
Budget
A. BUDGET PERIOD (e.g.]! 1/ 20Jff to12/31/20XX):
10/1/2013 to 9/30/2014
B. EXPENSES
Please itemize expenses that are applicable to your program or project. Please note:
Columns will not total automatically i f a currency field is left blank
Proposed Budget Amount Amount In Kind Total Budget
(list each budget item) Requested secured from Expense
from GRIC other Funders
Salaries & Benefits $75,000.00 $1,142,121.00 $0.00 $1,217,121.00
(Program/Nursing)
Professional Fees $0.00 $63,390.00 $0.00 $63,390.00
Supplies/Office Expenses $8,000.00 $44,985.00 $0.00 $52,985.00
Facility/Medical Equipment $17,000.00 $180,278.00 $0.00 $197,278.00
Travel $0.00 $10,300.00 $0.00 $10,300.00
Depreciation $0.00 $84,090.00 $0.00 $84,090.00
Misc. Expenses $0.00 $98,997.00 $0.00 $98,997.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
$0.00 $0.00 $0.00 $0.00
Total Budget $100,000.00 $1,624,161.00 $0.00 $1,724,161.00
Rev. 2/2012

ri.
R 1--louse
Proposal to the Gila River Indian Community
Budget Narrative
C. BUDGET DETAIL, IF APPLICABLE (Narrative description of unusual budget items, in-
kind expenses, donations, etc.)
Salaries and Benefits: $75,000 in funding will support medical staff, including registered
nurses and certified nursing assistants, for approximately 100 24-hour respite stays.
Supplies/Office Expenses: $8,000 will provide food and Life-enhancing Activity supplies for
approximately 100 24-hour respite stays.
Facility/Medical Equipment: $17,000 will support medical equipment and facility expenses
for approximately 100 24-hour respite stays.

ne Bead Virden
R House.
Proposal to the
Gila River Indian Community
FY 2013 List of Funders & Funding Sources*
Corporate and Foundation Grants
Salt River Pima-Maricopa County Indian Community (awarded) $100,000
Nina Mason Pulliam Charitable Trust (awarded) $75,000
Season For Sharing (awarded) $7,500
Bob & Renee Parsons Foundation (awarded) $26,000
West Valley Lutheran Thrift Shop (awarded) $8,000
Fort McDowell Yavapai Nation (pending) $10,000
Boeing Employees Community Fund (pending) $5,000
Otto & Edna Neely Foundation (pending) $7,500
CVS Caremark (pending) $5,000
Valley Anesthesiology (pending) $10,000
The Board of Visitors (pending) $100,000
Phoenix Suns Charities (pending) $10,000
Phoenix Suns Charities Playmaker (pending) $100,000
Sundt (pending) $7,500
Desert Schools Federal Credit Union (pending) $7,500
Steele Foundation $100,000
Kemper and Ethel Marley Foundation $80,000
Bruce T. Halle Family Foundation $10,000
Virginia G. Piper Charitable Trust $100,000
Walmart Foundation $25,000
Arizona Diamondbacks Charities $5,000
Three Desert Winds Foundation $30,000
Cardinals Charities $5,000
Avnet $5,000
Other Project Funding Sources
Individual Donations $264,600
State Contracts $78,500
Special Events $150,000
rd Party Events $266,600
Other Revenue $25,425
Dividend/Interest Income 100,000
* We anticipate similar FY 2013/2014 funding sources based on relationships and past history.

HOSPICE
oftheVALLEY
April 12, 2013
Gila River Indian Community
Office of Special Funding
P.O. Box 2172
Sacaton, AZ 85147
To Whom It May Concern,
I am writing in support of the Sponsor-A-Child proposal from Ryan House to the Gila River
Indian Community.
Ryan House is a state-of-the-art respite, palliative and end-of-life care facility for children with life-
threatening conditions. In Arizona, an estimated 5,000 children with life-threatening conditions are
receiving round-the-clock care at home. Prior to Ryan House these families had limited options for
respite care services. Now families can take advantage of the state's only child-centered respite and
palliative care offered in an intimate home-like setting that meets the needs of the entire family.
Hospice of the Valley and Ryan House enjoy a true partnership that includes shared facilities and
staff. In our shared location, Ryan House occupies the ground floor and Hospice of the Valley
provides adult hospice care on the 2 nd floor. This arrangement, combined with shared staff, results in
significant cost savings for Ryan House and enables the organization to direct more resources to
services versus overhead.
Ryan House is an important part of our community and I hope that you will consider continued
support for this unique organization.
Sincerely,
1510 E d •
Phoenix. A1 Susan Levine
850/./, -565n Executive Director
602.S30.6900
Fax 5:10.69()1
hov.org
not-tot profit otgarn ttioll

PHOENIX
CHILDREN'S
Hospital
April 10, 2013
Gila River Indian Community
Office of Special Funding
P.O. Box 2172
Sacaton, AZ 85147
To Whom It May Concern,
As one of the medical directors at Ryan House, and a physician at Phoenix Children's Hospital, I
am honored to support the organization for a grant from the Gila River Indian Community.
Phoenix Children's Hospital has many community partners and subspecialties. Phoenix
Children's Hospital has long been a supporter of Ryan House — sharing referrals and staff, and
participating in collaborative research. Our current joint research project is capturing statistics
from Ryan House and PCH to examine the benefits of Ryan House, including the degree to
which Ryan House reduces the number of unnecessary hospital visits.
Ryan House is a state-of-the-art respite, palliative and end-of-life care facility for children with life-
threatening conditions. In Arizona, an estimated 5,000 children with life-threatening conditions are
receiving round-the-clock care at home. Prior to Ryan House these families had limited options for
respite care services. Now families can take advantage of the state's only child-centered respite and
palliative care offered in an intimate home-like setting that meets the needs of the entire family.
Ryan House is an important part of our community and I hope that you will consider continued
support for this unique organization.
Sincerely,
(79
Tressia Shaw, MD
1919 E. Thomas Rd. e Phoenix. AZ 85016 (602) 933-1000 (888) 908-5437 www.phoenixchiidrens com

June 25, 2012
To Whom It May Concern:
My family and I have stayed at Ryan House on multiple occasions. I am a single mother and my son,
Joel, has Neurofibromatosis Type 1. He has multiple tumors on his spine and brain and wears an orthotic
brace to prevent further damage to his spinal cord. His older brother, Carter, loves Joel and would be
devastated if anything happened to him. Because of the severe compression on his spinal cord he is
unable to stay in traditional day cares. Ryan House is my only form of respite.
Our first stay at Ryan House coincided with my son's release from the ICU at Phoenix Children's
Hospital. We spent 5 days in the ICU and I was nervous to go home as I don't have family nearby for
support. Ryan House stepped in and provided emotional and physical support for my family. I was able
to sleep well knowing the nursing staff and doctor-on-call were readily available.
The home-like setting, along with the professional and skilled staff, provide a fun and safe environment
for my son and I schedule a stay for Joel once a month on average. I am a full-time working mom who is
raising my special needs son alone. We average 7 doctor/therapy appointments per week. He has an MRI
every 3 months and I am in the midst of getting second and third opinions from experts all over the
country. We have narrowly escaped chemotherapy and invasive surgeries on several occasions. This life
is more stressful than you can imagine. All the love and joy in your heart can't refill your physical body
when you are exhausted and up all night praying and watching over your child. I pour over medical
journals and paperwork from insurance companies and experts in the field nearly every night.
Before Ryan House came along I really struggled. I now depend on Ryan House for mine and my
family's well being. Without a recharged and energized mom, the whole family suffers. I know that Joel
will be active and entertained all weekend. The volunteers and staff love and interact with him throughout
the visit and I can rest knowing he is safe and any emergency will be immediately attended to.
My kids are my life and I am humble enough to know I cannot do this on my own. I realize the fragile
balance required to raise a special child. It is an honor and a huge requirement of the soul. My recharge
comes monthly with the help of Ryan House.
Jolyn and Joel Andrews

INTERNAL REVENUE SERVICE .DEPARTMENT OF THE TREASURY
P. 0. BOX 2508
CINCINNATI, OH 45201
Employer Identification Number;
Date: fte 2 g ziC6 20-1852393
DLN:
17053328031044
RYAN HOUSE Contact Person:
7470 E NESTLING WAY JOAN C KISER ID # 31217
SCOTTSDALE, A2 85255-4637 Contact Telephone Number:
(877) 829-5500
Accounting Period Ending:
DECEMBER 31
Public Charity Status:
170(b) (1) (A) (vi)
Form 990 Required,
YES
Effective Date:of Exemption:
AUGUST 2, 2004
Contribution Deductibility:
YES
Advance Ruling Ending Date:
DECEMBER 21, 2008
Dear Applicant:
We are pleased to inform you that upon review of your application for tax
exempt status we have determined that you are exempt from Federal income tax
under section 501(c) (3) of the Internal Revenue Code. Contributions to you are
deductible under section 170 of the Code. You are also qualified to receive
tax deductible bequests, devises, transfers or gifts under section 2055, 2106
or 2522 of the Code_ Because this letter could help resolve, any questions
regarding your exempt status, you Should keep it in your permanent records.
Organizations exempt under section 501(c)(3) of the Code are further classified
as either public charities or private foundations, During your advance ruling
period, you will be treated as a public charity. Your advance ruling period
begins with the effective date of your exemption and ends with advance ruling
ending date shown in the heading of the letter.
Shortly before the end of your advance ruling period, we will send you Form
8734, Support Schedule for Advance Ruling Period. You will have 90 days after
the end of your advance ruling period to return the completed form. We will
then notify you, in writing, about your public charity status.
Please see enclosed Information for Exempt Organizations Under Section
501(c) (3) for some helpful information about your responsibilities as an exempt
organization.
Letter 1045 (DO/CG)

RYAN HOUSE
Sincerely,
Lois 1. Lerner
Director, Exempt Organizations
Rulings and Agreements
Enclosures; Information for Organizations Exempt Under Section 501(C)(3)
Letter 1045 (DO/CG)

Internal Revenue Service Department of the Treasury
P.O. Box 2508
Cincinnati, OH 45201
Date: NOV 0 2008 Person to Contact:
Vaida Singleton
ID# 0203345
RYAN HOUSE Toll Free Telephone Number:
% HOLLY COTTOR 877-829-5500
PO BOX 16234 Employer Identification Number:
PHOENIX AZ 85011-6234 20-1852393
77 7
Dear Sir or Madam:
This is in response to your request of November 5, 2008, regarding your tax-exempt status.
Our records indicate that a determination letter was issued in February 2005, that recognized you as exempt
from Federal income tax, and reflect that you are currently exempt under section 501(c)(3) of the Internal
Revenue Code.
Our records also indicate you are not a private foundation within the meaning of section 509(a) of the Code
because you are described in section 509(a)(1) and 170(b)(1)(A)(vi).
Donors may deduct contributions to you as provided in section 170 of the Code. Bequests, legacies, devises,
transfers, or gifts to you or for your use are deductible for federal estate and gift tax purposes if they meet the
applicable provisions of sections 2055, 2106, and 2522 of the Code.
If you have any questions, please call us at the telephone number shown in the heading of this letter.
Cincry/Westcott
Manager, Exempt Organizations
Determinations