Annual Reportto the Community

2010Raising Special Kids

Mission

To improve the lives of children with disabilties and specialhealth care needs by providing parents with information,training and support.

Programs and services are offered free of charge, in Englishand Spanish, without regard to the child’s disability,age, fam-ily income, qualifying conditions or other eligibility factors.

Credo of Family Support

We believe that experienced families are a key source ofknowledge & support to help parents in becoming effectiveadvocates for their children.

We believe that professionals are important allies for families. The shared wisdom, counsel, respect and supportcreates enhanced positive outcomes for children.

We value diversity and celebrate our commitment to serving families in many forms.

We believe in supporting the role of the family in establishingpublic policy, and promoting public awareness related tofamilies and disabilities.

We believe that parents who model effective self-advocacyencourage a child’s pursuit of his or her own dreams.

“ I am so glad I called. You

opened up my world and

now I can reach out to find

what my kids need. Thank

you so much for your help.”

Letter from thePresident of the Board

xxxxxPresident Kevin BonnerFennemore Craig

Vice President Elaine Ellis, MD

Secretary Vickie HerdExtended Family Disability Services

LLC

Treasurer Elizabeth FreeburgWells Fargo Private Client Services

Heather BuchtaQuarles, Brady, Streich & Lang

Jim ColeChannel 3 TV

Bob CoxNothing But NET

Blanca Esparza-PapCommunity and Public Relations

Manager, Channel 3 TV

Karen HindsTempe Union High School District

Shirley KaufmanRetired Attorney

Michael RemusDirector of Special Education,

Deer Valley Unified School District

Gabriela Sanchez OrozcoPresident of G.A.N.E. (Grupo de

Apoyo para Nios Especiales)

Susan VoirolTempe Union High School District

Tim WattersColliers International

2010 BOARD OF DIRECTORS

Kevin Bonner

“Thanks to you, our child is

one of the thousands of

kids who is getting

treatment, and getting

better every year.

We’re proud of all the work

he's done, and every year

brings more success!”

Raising Special Kids strives to improve the livesof children with disabilities and special healthcare needs by supporting people who carefor them: families and professionals.

Helping families

Improving life for children

with disabilities and

special health care needs

20106,231 parents received

information, training, andindividual assistance.

“Your information is so

practical and useful.

I know what to do now.”

Developing Parent Leaders

Most families are not prepared with the skillsand knowledge to address the unique chal-lenges of raising a child with a disability. Eachstep of a child’s development reveals theneed for new creative solutions which aremade more complex by the presence ofextraordinary health or ability issues unfamiliarto the family or their support network. Bringingfamilies new to these challenges togetherwith experienced parents who can share theirknowledge has proven to help provide chil-dren with the environment and support theyneed to fully develop their potential. The staffand trained volunteers of Raising Special Kidsare family members with experience raising achild with a disability.

Parent Leaders offer information and support.

2010265 Parent to ParentMatches

All participants in our volunteer parentmentoring program recieve follow-up contact from staff.

91% of parents report the experiencehelped them become more effective

in advocating for their child.

100% reported positive benefits fromemotional support and the opportunityto talk with “someone who understands.”

“The meeting on Saturday

was AWESOME! I learned so

much!! It was so helpful

for my meeting at the

school today. I went in

overly-prepared and came

out a happy mom.”

2010

2010Supporting Professionals

Family and CommunityMedicineThrough the Family and CommunityMedicine Program, pediatric physiciansin residency complete an orientationwith Raising Special Kids staff followedby a home visit with Family Faculty—trained volunteer parents—for a first-hand look at the challenging role ofraising a child with special needs.

Parent Panels Trained Parent Leaders present directlyto students in education, health andsocial services. Their perspective onthe challenges of raising a child withspecial needs adds fresh insight totraining programs and helps preparefuture professionals to provide family

friendly services.

Acquiring an understanding of the challengesof families living with disability face each dayhelps professionals in health, education, childcare and social services provide more effec-tive services to children and their families. Theinsight professionals gain from informed par-ent leaders results in improved care, bettersystems management and more positive out-comes for individuals with disabilities and thecommunities in which they live.

64 pediatric and familypractice physicians fromsix hospitals and medicalcenters completed train-

ing and Home Visits.

691 Pre-service teachersattended parent panel

presentations.

My reaction to the entire

presentation was "wow!"

Raising Special Kids

provides a phenomenal

service and now I have a

new resource to help me.”

2010

32% Families of DiverseLanguage andCulture

Serving Diverse Communities

2004-2005Total Contacts

Raising Special Kids provides support throughinformation, training, and assistance in findingresources to thousands of Arizona residentseach year. Services are offered free ofcharge to families and available to diversecommunities in English and Spanish through-out the state. Assistance is designed to meetthe unique needs of each family and is avail-able through varied methods including indi-vidual consultation, workshops and confer-ences, and parent leadership developmentopportunities.

Staff and Parent Leaders represented thefamily voice on systems-level boards, commit-tees, and activities:

• First Things First

• Developmental Disabilities Planning Council

• State Rehabilitation Council

• ICC for Part C programs

• Special Education Advisory Panel

• Cultural Competence Committee (ADHS)

• Foster Care Review Board

• Division of Developmental DisabilitiesSustainability and Innovation Task Force

• Arizona Autism Coalition

• Children’s Action Alliance’s Health CareCommittee

• Arizona Disability Advocacy Coalition.

Community Outreach Activities

• Special Day for Special Kids

• Autism Conference – Window Rock

• Hopi Special Needs Activity Day –Kykotsmovi

• Salt River Pima Maricopa Indian Council

• Training at Head Start programs servingNavajo and Hopi families

• In collaboration with UMOM, monthly work-shops, training, and family support services,were provided to meet the unique needs ofof homeless families.

Need new

data

Sent data to Vickie

for new report

“Raising Special Kids has

been a tremendous

help, comfort and

encouragement to count-

less individuals and families

who wrestle with some of

the toughest issues people

have to face.”

2010

2010

40% Professionals (Health, Education, Social Services)

60% Families of children with disabilitiesand special health care needs

Parents and ProfessionalsServed

Many parents, and indeed, many profession-als, find the system under which special edu-cation operates to be overwhelming. Somefamilies found their child exiting high schoolbefore they fully understood the complexi-ties of qualifying for special education serv-ices, developing Individual EducationPrograms (IEPs), and the availability of assis-tive technology. Raising Special Kids hashelped thousands of parents understandtheir rights and how the system works so theycan advocate effectively for what their childneeds to receive a “Free and AppropriatePublic Education” (FAPE) as guaranteed bylaw.

The U.S. Dept. of Education awarded RaisingSpecial Kids a 5-year federal grant to serveas Arizona’s Parent Training and InformationCenter. Parent centers in each state providetraining and information to families of infants,toddlers, school-aged children, and youngadults with disabilities and the professionalswho work with them. This assistance helpsparents participate more effectively withprofessionals in meeting the educationalneeds of children and youth with disabilities.

Education

Raising Special Kids serves as Arizona’sFamily to Family Health Information Centerunder an award from the U.S. Departmentof Health and Human Services.

Our services encourage principles of family-centered care, and educate about policyand regulatory developments that mayimpact children and youth with specialhealth care needs and their families.

Health

94% of physicians trainedreported improvement totheir ability to communi-

cate with families.

92% of parents reportedinformation at workshops

will help them make better decisions abouttheir child’s education

Principles of Family Centered Care

• Acknowledges the family as the constant in a

child’s life.

• Builds on family strengths.

• Supports the child in learning about and partici-

pating in his/her care and decision-making.

• Honors cultural diversity and family traditions.

• Recognizes the importance of community-based

services.

• Promotes an individual and developmental

approach.

• Encourages family-to-family and peer support.

• Supports youth as they transition to adulthood.

• Develops policies, practices, and systems that are

family-friendly and family-centered in all settings.

• Celebrates successes.

“Thanks again for attend-

ing the IEP meeting! I can't

believe we finally got what

we've been after for two

whole years.

I am really enthusiastic and

have high hopes!!”

Age of Children of Families ServedDisabilities of Children of Families Served

2010

%

The O’Hare Family

When she mentioned at Jack’s18-month checkup that her sonwas not using any words, Ellenrecalls being told “not toworry.” After three more monthspassed with no words, theirdoctor recommend an EarlyIntervention evaluation. It waswhile receiving speech andoccupational therapies thatEllen learned about RaisingSpecial Kids.

She began consulting with staff,attending workshops and learn-ing how to work with theirschool to get appropriateplacement and services forJack. Ellen finds the insightgained in the workshops to beinvaluable and has attended “asmany as I can!”

Ellen has become a leader in a support group for families of students with special needs atJack’s school. She regards Raising Special Kids as an essential tool in assisting other familieswhom she often refers for services. Tom, a teacher at Midwestern University, has been instru-mental in incorporating Raising Special Kids Parent Panels into classes for medical studentsat the university. Both parents use their experience of their child’s disability to reach out tohelp other families and professionals improve the lives of children.

Family Stories

Ellen & Thomas O’Hare with son Jack who has autism

1 Autism2 At Risk (0-3) Developmental Disabilities 3 Developmental Disability4 Speech/Language Disorder5 ADD/ADHD6 Down Syndrome7 Behavioral Health

1 2 3 4 5 6 7

Sent data to Vickie

for new report

“Thank you, thank you for a

wonderful conference

today! I learned so much

and got alot of resources

that I did not have before.

Thank you for all that you do!”

$ 879,118 Total Revenue

$ 670,072 Parent Information, Support & Training

$ 104,878 Training for Professionals

$ 95,738 Community Support

$ 774,949 Program Expenditures

$ 105,675 Administrative Functions

$ 880,624 Total Expenditures

Reporting year revenue and expenditures

A foundation grant from the Virginia G. Piper Charitable Trust for parent training supported aseries of parent conferences throughout the state:

• Collaborative Therapy Conference – Phoenix Children’s Hospital

• Assistive Technology Conference – Noah’s Convention Center

• Practical Parenting Conference (Spanish) – Banner Estrella Medical Center

• Practical Parenting for Foster Parents – Disability Empowerment Center

• Collaborative Therapies Conference – Tuba City

Milestones

Financial Statement

others?

2010

“Reader satisfaction with

the newsletter is extremely

high. Readers almost

universally found the

information is presented in

a manner that is family

friendly and easy to

understand. The reputation

for being trustworthy and

reliable is excellent.”

— Piper Trust Report on results of Newsletter Survey

Referral AgencyA Place to Call HomeAid to the Adoption of Special

KidsAmerican Academy of

PediatricsArizona Autism UnitedArizona Baptist Children's

ServicesArizona Bridge to Independent

LivingArizona Care Providers, LLCArizona Center for Disability LawArizona Child Study CenterArizona Counseling and

Treatment ServicesArizona Department of

Economic Security - ChildProtective Services

Arizona Department ofEconomic Security - Division ofDevelopmental Disabilities

Arizona Department ofEducation - PINS

Arizona Department of HealthServices - Bureau for Women'sand Children's Health Services

Arizona PediatricsArizona State UniversityArizona's Children AssociationAssociation for Supportive Child

Care: The Child CareConnection

Bart Stevens Special NeedsPlanning Services

Bureau for Women's andChildren's Health Services

Cardon Children's MedicalCenter

CareConnectAZCatholic CharitiesCenpaticoChild & Family Resources/AzEIPChild Care and ReferralChildren's Rehabilitative ServicesChristina Family Care AgencyCity of Phoenix Early Head StartCity of Phoenix Head StartCommunity Information &

ReferralCoronado Elementary SchoolDeer Valley School DistrictDevereuxDirect Care PersonnelDreaming Summit Elementary

SchoolEmily CenterFamily Learning CenterFamily PartnersFirst Southern Baptist Church @

Sahuaro RanchFirst Things FirstFriendly HouseGALAGANEGilbert Parent CouncilGilbert Unified School DistrictGlendale Family Health CenterGlendale Union High School

DistrictGolden Gate Theological

SeminaryHealth and Associates

IncorporatedHealth Through NatureHealthy Mothers Healthy Babies,

Maricopa CountyHigh Functioning Asperger's Group

HummingbirdHurley Ranch Elementary SchoolJewish Family & Children's

ServicesJoni and FriendsKith and KinLa Frontera EMPACTLaveen SchoolLearning and Loving It

SymposiumLegend SpringsLife Development InstituteLindbergh ElementaryMagellan of ArizonaMaricopa Health PlanMaricopa Medical CenterMaryvale Family Health Center

(MIHS)Melmed CenterMelvin E Sine ElementaryMesa Unified School DistrictMexican ConsulateMIKIDMountain Health and WellnessMountain Pointe High SchoolMurphy School DistrictMuscular Dystrophy AssociationNAMI ArizonaNorthern Arizona Autism Society

of AmericaOn Angel's WingsOne Life UnlimitedParenting ArizonaPayson Education CenterPEDI CenterPeople Of ColorPhoenix Children's HospitalPhoenix Interfaith CounselingProvidence Clinica Familia

ProvidenciaQuality Care NetworkRehab Without WallsRISE, Inc.S.E.E.K.Safe HavenSalt River High SchoolSARRCSharing Down SyndromeSouthwest Behavioral HealthSouthwest Human DevelopmentSouthwest NetworkSt. Joseph's HospitalSunrise E ElementarySunshine AcresTASK San DiegoTempe Unified School DistrictTouchstone Behavioral HealthTourette Syndrome Assn Support

GroupTraumatic Brain Injury Assn.Tungland CoporationU.S. Department of EducationUCP of Central AZUMOMUnion Elementary School

District/Dos Rios ElementaryUnited Healthcare APIPAUniversity Family CareWashington Elementary School

DistrictWeinburg Elementary/ChandlerWest Valley Family Development

CenterYavapai School

Special thanks to our State Partners who fund Family Support Programs

Arizona Department of Economic Security - Division of Developmental Disabilities

Arizona Department of Health Services - Office for Children with Special Health Care Needs

Arizona Department of Education

Thank You to our Community Partners

Donors

“We called Raising Special

Kids, because we knew the

information and training

you provide to families is

clear and accurate.”

Tommi Pierce, Special Education Director,

Gilbert School District

Raising Special Kids

5025 E. Washington St., Suite 204

Phoenix, AZ 85034

602-242-4366 • 800-237-3007 • Fax 602-242-4306

www.raisingspecialkids.org

Raising Special Kids is a 501(c)3 non-profit organization.