2 0 1 4 A n n u a l R e p o r t t o t h e C o m m u n i t y

Raising Special Kids

RaisingSpecial KidsFamilies Helping Families

Raising Special Kids Mission Raising Special Kids exists to improve the lives of children with the full

range of disabilities, from birth to age 26, by providing support, training,

information and individual assistance so families can become effective

advocates for their children.

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Each year seems to bring new changes and growth at Raising Special Kids. We are pleased to present the 2014 Annual Report to feature the latest news about our mission and accomplishments from the past year.

As a medical professional, and parent of a beautiful, accomplished daughter with Down syndrome, I am particularly proud of the fact that so many professionals in

health, education, and social services attended training last year to improve their skills in providing a better quality of care for families and for children with special health care needs.

As you read through the report, you’ll see how hard we’ve been working to achieve our mission of family support for parents of children with the full range of disabilities. We served more families in 2014 than we have in previous years, forged more community partnerships, and trained more professionals than ever before. The numbers are all described and presented, and you can see the impact we’ve had on the community, but Raising Special Kids has never been about the numbers.

Raising Special Kids is about the kids, each and every single one of them. I hope you will take the time to read the story from the Nico family. Jill Nico tells the real story of 2014.

For 35 years Raising Special Kids has been there: for the Nico family, for your family, and mine. For all our children, here’s to a bright future full of promise and potential.

Paula Banahan, President

Board of Directors

Joyce Millard Hoie, Executive Director

Board Members

Paula Banahan, President

Tom Batson, Secretary

Barbara Brent

Leslie Cohen, MD

Blanca Esparza-Pap, Vice President

Elizabeth Freeburg, Treasurer

Tonya Gray

Karen Hinds

Mike Horne

Regan Iker-Lopez

Jennifer Kasten

Jennifer Kupiszewski

Jacob Robertson

Gabriela Sanchez-Orozco

Wade Shrader, MD

Karin Smith

Janelle Tassart

Letter from the Board President

3-4 Programs & ServicesLearn more about the programs and services offered to families and professionals

5 FinancialsLearn more about the financial health of Raising Special Kids

6-7 Donors & SupportersLearn more about the donors who help make Raising Special Kids possible

8 CelebrationsCelebrate with Raising Special Kids for the awards and recognitions received

What’s Inside - Table of Contents

RaisingSpecial KidsFamilies Helping Families

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Who we Serve75% Families with disabilities and special health care needs25% Professionals (health, education, social services)

8593 families received information, training, and individual assistance98% of parents said I received information to help me address a critical need related to my child’s education352 Parent to Parent Matches92% of parents said that Parent to Parent support improved my ability to advocate for my child’s needs, services, and care

Programs for Parents and FamiliesParent-to-Parent support has always been the heart of Raising Special Kids. Each year, more than 300 families in Arizona are connected with veteran “mentor” parents who have walked a similar path, and who understand the challenges of raising a child with a disability or special health care need. Raising Special Kids provides training and consulta-tion in special education to families, schools, teachers, and other professionals.

“One of the most important things I’ve learned from Raising Special Kids is that parents are valu-able members of any team decision-making process and their participation is required by law. Parents are powerful when given the right tools and Raising Special Kids helped me develop my toolbox.”

- Jill Nico

Raising Special Kids provides information, training, resources, and support to families of children with disabilities and special health care needs in Arizona. Experienced staff lend an understanding ear and assist families in identifying and locating appropriate resources.

Workshops offer training in a variety of skills including advocacy, effective communication and collaboration techniques. Our newsletter, Connecting, reaches more than 11,000 parents and professionals and e-news alerts are shared by request with a growing list of interested individuals.

Over 12,000 parents and professionals were reached through e-news alerts by request.

Jill remembers being in the recovery room the day her son Jon was born. When her husband returned to her side after checking on the baby, she described him as “changed.” The doctor then explained to her what he had already shared with her husband; he had identified a few markers for Trisomy 21. When the doctor shared the more common term, Down syndrome, Jill’s limited understanding and experience provided her with dread for her son’s future.

It did not take her long to adjust to what she refers to as “the new normal” which included weekly visits from an early interventionist and various therapists. Jill connected with other families of children with Down syndrome and the fears Jill felt the day Jon was born began to subside.

Life went along smoothly until Jon was in first grade. Jill reached out to Raising Special Kids. She recalls, “One of the most important things I’ve learned from Raising Special Kids is that parents are valuable members of

any team decision-making process and their participation is required by law. Parents are powerful when given the right tools and Raising Special Kids helped me develop my toolbox.”

Jill feels Jon has also provided her with a “unique perspective” in her current position as a program advisor in the Disability Resource Center at Estrella Mountain Community College. Jill recognizes the students she works with as “risk-takers and overcomers” and hopes her experience with them will help her help Jon when it is time for him to make post-high school plans. It is a very different and much more fulfilled future than Jill envisioned the day he was born.

Jill has continued to expand her toolbox as Jon has gotten older and other parents often turn to her for advice. “I regularly refer parents to Raising Special Kids and I tell them how much the organization has helped me. I explain that the Family Support Specialists really understand because they are parents, too. And, most importantly, Raising Special Kids never turns anyone away.”

Raising Special Kids Helped me Develop my Toolbox

Programs and Services

Programs and Services for Professionals

Children Demographics

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Programs and Services continued

Programs for resident physicians in pediatrics and family practice relay information about parents’ perspective on issues relating to medical services. Parent Panels and staff-led workshops are available to students in education, medical, oral health and social service fields.

“Having experienced parents help new or overwhelmed parents navigate the system is exactly what they need. Why aren’t all children with special needs referred to Raising Special Kids? It’s amazing how the human spirit can overcome such difficult circumstances.”

- Chris Cassidy, M.D., Phoenix Children’s Hospital

Children Demographics

Age0-2 year – 12%3-5 years – 18%6-11 years – 34%12-15 years – 18%16-18 years – 12%19+ years – 6%

DisabilityADHD – 12%Autism – 24%Intellectual – 4%Deaf/Blind – 3%Developmental – 10%Emotional/Mental – 7%Epilepsy – 3%

Hearing Impairment/Deaf – 1%Multiple Disabilities – 1%Other Health Impairment – 9%Orthopedic – 1%Specific Learning Disability – 6%Speech/Language – 5%Suspected/Undiagnosed – 5%Traumatic Brain Injury – 1%Visual/Blindness – 1%

EthnicityAfrican American – 6%Asian/Pacific Islander – 2%Bi-Racial – 2%Caucasian – 48%Hispanic/Latino – 37%Native American – 5%

Disability

1%

1%3%

1%

1%

1%

24%

7%10%

6%5%

5%

4%

3%

12%

9% Ethnicity

48%

2%

37%

6% 2%5%

Ages

34%

18%

12%12%

18%

6%

4,676 Training/Conference Attendees (Parents 2,004; Professionals 2,672)

98% of educational professionals reported being better prepared to work with families

57 pediatric and family practice physicians from five hospitals and medical centers completed training and home visits

98% of physicians reported training improved ability to communicate with families

n Annual Parent Day – Ganado

n Assistive Technology Center Open House – Flagstaff

n NAZ Transition Fair - Flagstaff

n Gila River Education Summit – Sacaton

n UMOM

n APS Agency Fair – Phoenix

n SPED Director’s Institute – Glendale

n Foster Care Family Resource Fair – Glendale

n East Valley Transition Expo – Mesa

n International Dyslexia Association Conference – Phoenix

n 10th Annual American Indian Disability Summit 2014 - Phoenix

n Special Day for Special Kids – Scottsdale

n Health & Wellness Fair – Phoenix

n AZA United 2014 Conference – Phoenix

n Special Needs Resource Fair – Kingman

n EPP Support Group – Tucson

n Outreach Challenger Baseball – Tucson

n Association for Education and Rehabilitation of the Blind and Visually Impaired Conference – Sedona

n Yuma High School Transition Fair – Yuma

n Regional Medical Center Family and Community Welcome Day – Yuma

n High School Transition Fair – San Luis

“I regularly refer parents to Raising Special Kids and I tell them how much the organization has helped me. I explain that the Family Support Specialists really understand because they are parents, too. And, most importantly, Raising Special Kids never turns anyone away.”

Community Outreach

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Parent Support Services

Training Support Services

Fundraising

Management and General

n 2014

$1,055,956

$439,982

$35,199

$228,790

PROGRAM EXPENDITURES(in thousands)

At Raising Special Kids we are committed to using funds responsibly to ensure we help families today and in future generations.

$135 Revenue

Per Family

Each workshop only required $135 of revenue

3,626 Donated

Hours

Total 3,626 hours would equal over $75,000

Where Does our Money Come From?

Financials

2014

Grants and contracts . . . . . . . . . . . . . . . . . . . . . . $1,759,926Donations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .$224,345

$1,507,886Grants and Contracts

$224,345Donations

Thank You to our Donors! Your generosity helps us serve thousands of families each year.

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“I really wanted to thank you again for all of your help and guidance. You helped us get started on our path to healing and getting us on track to a brighter future. We couldn’t have done this without you!”

8593 Families Assisted

Friends (to $249)Lisa Aaroe Alyssa AdamsNadine AlfonsoMary Allare, MD AmazonSmile Foundation Scott Anderson Brunetta Andrews Corey & Nancy Arvizu Martha Ashworth Ellen & Lon Babby Christopher & Dawn Bailey Judy Banta Shirley Bentle Cynthia Betts Robin Blitz, MDLaura & Daniel Boone Ross & Kathy Bremner Barbara Buchanan Anna Burgmann Mike Buzar Shari Capra John Carroll Jane Carter Julie Cauich B G Cazares Kristen & Jared Challacombe Anne Chase Peter Chenen Marilyn Coffman Jim Cole Lani Angell Comp Annette Cox Martin Crist Cynthia Cummens Jane Dalen Ryan Dalton Lauren Daniels Philip & Teresa Darling Alan & Dawn Davies Angela Denning Amy Dill Dean & Janice Dinner Dixon Golf, Inc. Eileen Dobias Jeff Edelen Frances Egbers Amalia Encinas Arriaga Kristin Eng Jill Estep Rob & Kathryn Falls Janet Fasulo Michele Ferber Ralph Figueroa Jr. Dr. Ronald Fischler Diedra Freedman Paula Friedlund

James Fults Mary Garland Marcella Gemelli JD & Joanne Ghelfi Timothy & Dana Gilker Evelyn Grabarek Great American Title Agency Susan Gregg Odom Katie Grider Andrew Grunwald Nancy Gunderson Thomas Halpern Jacob David Hammond Georgeanne Hanna Madelyn Harper Barbara Harris Altaf Hasan Michelle Hawkins Karen Hayenga Bonnie Heal Vickie Herd Mary Holman Honeywell Hometown Solutions Barry & Becca Hornstein Kris & Meriah Houser Wendi Howe Linda Hudnall Claudia & Leon Igras Alisa Ilardo Grace Kasnick Geraldine Kasten Ken and Marianne Kennedy Dr. & Mrs Dan & Jill Kessler Anthony King Caitlin King Randy & Sara Kirk David Klingaman Melba Kolling Dick & Betty Kowalski Mark Kuhn Karen Lee Joyce Lefco Sheri Lehmann Brook Lincoln Gabriela Lopez Carlos Lopez Urueta Raymond & Rosemary Maione Danielle & Richard Martinez Shauna & Ronald Mattson Dan McAuliffe Kathy McDonald Deiva Meyyappan Francisca Morquecho Kim Morton Richard Mroczek Eileen Mueske Tobi Murphy

Janna Murrell Helen Nagle Ramona Napier Chellappan Narayanan Jodie Nebrich Rob Neely Mary Neil Jill Nico Janine Oliver Erin Onacki Nancy Oreshack Janet & John Osgood Jr. Stephen & Tonya Price Mary Pyles Kelly Randall Bill and Rhonda Reinhold Ross Robb The Robb Family Trust Karen Ross Alan & Ellen Rothbart Vicky Rozich Ellen Rutemiller Mark Ryan Mary Sachau Guadalupe Sanchez Alberto Santana Shelly Shaffer Jill & Carlo Shaw Amy Shoptaugh Michelle & Richard Slack Chuck & Nancy Smith Robin Smith James & Christina Speros Peggy & Don Storrs Emily Striffler John Strittmatter Tamara Talbot Amy & Eric Taylor Debbie Terrill Christopher Tiffany Terry Tiffany Thomas Timmer Betsy Trombino Dan & Judith Trudeau Stephen L Tufts Jeffrey Turner Esmeralda Vasquez Aaron Shane Vernon Anh Toan Vu Jill & Michael Walker Virginia Ward Jo Ann & Gordon Watkins Christina Watson Theodore Wayne Claudia Weiss Wells Fargo - The Private Bank Scott Wenzel

2672 Professionals

Trained

375 Community

Partners

3,626Donated

Hours

2014 Donors

Legacy Benefactors

$200,000+CareScape, Inc.

Arizona Business Bank 7

Jill West Mark & Meg Williams Neil Wintle Cindy Wolfinger Cherie Wright Kimberly Wright Eric & Caryle Zaharia Mentors ($250.00 to $499.00)Laura Alger Nancy Allen Marti Baio Sandy Bawden Greg & Kelly Clark Paul Cocuzza Leslie Cohen Todd Crimmins Brian & Sara Dessoy Scott & Christine Dietrich Michael Disalvo Heather Dunn Elaine Ellis, MD Joseph Errante Michelle & Arvid Faudskar Rosa Fernandez Arminda Figueroa Tonya Gray Jack Hallam Randy and Frymet Hare Brad Harper F.C. Harris Justin Hart Nathaniel Hastings Gary & Amy Heinfeld Karen Hinds Philip R Hobday Valerie & David Iwinski Alison & Clark Johnson Sandra Kotecki Diane Kudo Jennifer Kupiszewski Carol & Jim Lee Ellen & William Leibow Jill Linden Andrew Martin Nancy Maser Nancy Meech Sharon Melton Dr. Shawn Meyer Zell Millard Maureen & John Mills Michelle Mowrey Amy Niederhaus Gayle Nobel Ndidiamaka Obiesie Philip Pangrazio Amy & Shaun Pressley Heather Prouty

Frank & Janet Pugh Kurt & Michele Kittleson Pam & Mark Remsey Kathryn Rich David Rucker Ruxton Schmietenknop Maulik Shah Jennifer & Dave Shields Mary Slaughter Jon & Lisa Soeby Linda J Tasco Paul & Margaret Tiffany Tigran Unciano Rob & Kelly Watson Tim & Sally Watters Cheryl Weiner Leslie Williams Patricia Winner

Mentors ($250 to $499)Laura Alger Nancy Allen Marti Baio Sandy Bawden Greg & Kelly Clark Paul Cocuzza Leslie Cohen Todd Crimmins Brian & Sara Dessoy Scott & Christine Dietrich Michael Disalvo Heather Dunn Elaine Ellis, MD Joseph Errante Michelle & Arvid Faudskar Rosa Fernandez Arminda Figueroa Tonya Gray Jack Hallam Randy and Frymet Hare Brad Harper F.C. Harris Justin Hart Nathaniel Hastings Gary & Amy Heinfeld Karen Hinds Philip R Hobday Valerie & David Iwinski Alison & Clark Johnson Sandra Kotecki Diane Kudo Jennifer Kupiszewski Carol & Jim Lee Ellen & William Leibow Jill Linden Andrew Martin

Nancy Maser Nancy Meech Sharon Melton Dr. Shawn Meyer Zell Millard Maureen & John Mills Michelle Mowrey Amy Niederhaus Gayle Nobel Ndidiamaka Obiesie Philip Pangrazio Amy & Shaun Pressley Heather Prouty Frank & Janet Pugh Kurt & Michele Kittleson Pam & Mark Remsey Kathryn Rich David Rucker Ruxton Schmietenknop Maulik Shah Jennifer & Dave Shields Mary Slaughter Jon & Lisa Soeby Linda J Tasco Paul & Margaret Tiffany Tigran Unciano Rob & Kelly Watson Tim & Sally Watters Cheryl Weiner Leslie Williams Patricia Winner

Guardians ($500 to $999)Jim Attwood Gary Berebitsky Barbara Brent Elaine Ellis, MD Laura Busby Blanca Esparza-Pap Jodi Feuerhelm Elizabeth Freeburg Steve & Vickie French Tim Kauffman Emily Kile Leyla Mackenzie Joyce Millard Hoie Donald & Danielle Needham Chuck & Donna Riser Jacob Robertson Paulina Serna Sheila Shapiro Lisa & Ronald Stalica State Employees Charitable Camp. Janelle Tassart United Cerebral Palsy Association of Central Arizona, Inc. Marc & Susan Voirol

Champions for the Cause ($1,000 to $19,999)

Advanced Business Learning, Inc Gerald Allen ASU Alumni Association/Public Affairs Paula & James Banahan Thomas Batson Blue Cross Blue Shield of Arizona Kevin & Amy Bonner The Bufka Foundation Carbonari Family Foundation, Inc. Cenpatico of Arizona Michael Cozzo Edward B. Diethrich M.D. Express Scripts, Inc. Gregg L. & Madelyn Foster The Hannah B Foundation Heinfeld Meech & Co., PC Eugene Huang Regan Iker-Lopez Ken & Valarie Kahoun Jr. Kile & Kupiszewski Law Firm MedShape Weight Loss Clinic, LLC Medtronic Delphine Mendez de Leon MGA Home Healthcare Peoples Mortgage Company NUVU Health Productions, Inc. Lawrence O’Neill Orthotic Specialists Kirk & Marilyn Peda Perkins Coie, LLP Phoenix Children’s Hospital Bill and Marsha Pike Sander Holdings Co., LLC Karin Smith Snell & Wilmer The Wayne Foundation United Healthcare Wells Fargo Bank, N.A. Welsh Law Group, PLC John & Molly West

“Thank you again for all your advice and guidance as it helped me tremendously in making the best decision for my son’s education. I couldn’t have asked for a better outcome. Most importantly, my son is happy and excited about school again.”

Thank you for your extraordinary generosity

Alliance of Arizona Nonprofits Policy Council

Arizona Autism Coalition

Arizona Department of Education • Community of Practice on Transition • Special Education Advisory Panel • Rules Committee • State Inclusion Coalition

Arizona Developmental Disabilities Planning Council

Arizona Disability Advocacy Coalition

Arizona State University, Presidents Community Council

ASPIRE (Achieving Success by Promoting Readiness for Education and Employment Advisory Council)

AFN Emergency Preparedness Task Force

Center for Parent Information and Resources

Division of Developmental Disabilities Advisory Council

Employment First

First Things First

Flagstaff Medical Center Patient and Family Advisory Council

Institute for Patient-Centered Design

Maricopa Family Support Alliance

Maricopa County CSHCN Coalition

Parent 2 Parent USA, National Board of Directors

Phoenix Children’s Hospital • Family Advisory Council • Genetic Services Advisory Committee

Positive Behavior Intervention Advisory Committee

Smooth Way Home

State Medicaid Advisory Council

State Rehabilitation Council

Boards and Councils Served by Raising Special Kids Staff

Raising Special Kids5025 E. Washington St., Ste. 204 Phoenix, AZ 85034

Phoenix: 602-242-4366 Flagstaff: 928-444-8834 Tucson: 520-441-4416 Yuma: 928-444-8803 Toll Free: 800-237-3007 info@raisingspecialkids.org

DONATE TODAY! www.raisingspecialkids.org

Raising Special KidsFamilies Helping Families

Lisa Aaroe, Ph.D.

Mary Allare, MD

Kevin Bonner

Heather Buchta

Linda Cannon

Jim Cole

Bob Cox

Elaine Ellis, MD

Jodi Feurehelm

Conrad Greene

Brad Harper

Vickie Herd

Mary Holman

Shirley Kaufman

Dan Kessler, MD

Bill Leibow

Ellen Leibow

Gina Maravilla

Susan Morris

Michael Remus

Susan Riedel

Carolyn Sechler

Mary Slaughter

Chuck Smith

Bill Spain

Don Storrs

Susan Voirol

Debbie Voll

Tim Watters

Advisory Council

The Parent Center Standards for Excellence, developed under the guidance

of the U.S. Department of Education, Office of Special Education Programs

(OSEP), consist of indicators that measure quality in nonprofit management

and family-centered services. The standards reflect current best practices and

federal requirements for OSEP-funded Parent Centers.

*Exemplary practices noted: office location and accessibility; the strategic use of an Advisory Council; fund diversification efforts; parent leadership practices, outreach to diverse populations and communities; and professional development opportunities.

The “Parent Center of Excellence Award” is

the highest award given to Parent Centers

which achieve 100% of the “Required”

indicators, at least 75% of the “Effective”

indicators, and at least 75% of the “Best

Practice” indicators.

Raising Special Kids meets Parent Center Standards for Excellence