2004 Annual Report - Support for Families of Children with Disabilities

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SUPPORT

FOR

FAMILIES

OF CHILDREN

WITH DISABILITIES

Annual Report

2004

The purpose of Support for Families is to ensure that families of children with any kind of disability or special health care need have the knowledge and assistance they need to make informed choices that support their child’s health, education, and development. We provide peer support to families, and information and education to families, professionals, and the community at large.

Programs and Services 2004

P

HONE

L

INE AND

D

ROP

-

I

N

S

ERVICES

...

...at the Open Gate Family

Resource Center and at satellite facilities in San

Francisco neighborhoods,

SFCD Community Resource

Parents (CRPs) offer families and professionals information, resources, and referrals. Our multicultural staff can reach families in English,

Spanish, Cantonese,

Mandarin, Tagalog, and

American Sign Language.

690 new families completed intakes in 2004.

CRPs responded to 5,848 phone requests from families and 3,933 requests from professionals in

2004 – a total of 9,781 requests for information, education, or support.

Drop-in visits to the Open

Gate Family Resource

Center totaled 219 people.

• Attendance at our satellite facilities in Bayview

Hunters Point, Chinatown, the Mission, California

Children’s Services Medical

Treatment Unit, and three area hospitals totaled 346.

S

UPPORT

G

ROUPS

...

...offer peer support, information, and resources to parents, caretakers and siblings of children with disabilities.

• During 2004, 14 different groups helped meet individual needs. They included two groups for

Spanish speaking families and two for Cantonese speakers; a group for

Bayview-Hunters Point families; groups for siblings; a group for families of children with

Prader-Willi Syndrome; the

Family Links to Mental

Health group; and Living

With Loss, among others.

• 223 parents, guardians and siblings attended Support

Groups offered during

2004.

T

HE

R

ESOURCE

L

IBRARY

...

...

lends books, catalogs, audio- and video-tapes, and toys.

The Support for Families

Resource Coordinator and

Librarian helped 128 families and 126 professionals check out 635 books, videos, toys and other materials this past year.

V

OLUNTEER

P

ARENT

M

ENTORS

...

...are parents of children with disabilities who complete training and are matched with other parents to offer support and resources on an individualized basis.

13 parents completed

Parent Mentor training in

2004; 7 of these belonged to our new cadre of Spanishspeaking mentors.

66 matches of Parent

Mentors and families were made during the year.

W

ORKSHOPS

,

T

RAININGS

,

AND

C

LINICS

...

...offer information to families and professionals on topics relating to disabilities and special health care needs.

Support for Families offered 157 education opportunities in 2004, including workshops, trainings, and small group individualized clinics in

English, Spanish, and

Support for Families Annual Report 2004 Page 2

Cantonese. More than

1,004 families and 1,143 professionals attended.

Topics during 2004 included Individual

Education Programs, Early

Intervention, Transition,

Childcare, Siblings,

Assistive Technology, and many others.

At our 2004 annual

Information and Resource

Conference more than 500 people obtained information from 74 exhibitors and 14 workshops. (See “Program

Highlight”, page 8).

C

OMMUNITY

E

DUCATION

AND

O

UTREACH

...

...includes teams of parents and staff who make presentations to classes, community organizations, and professional groups about disability issues and the experiences of families.

Programs and Services 2004

Medical and nursing students are also matched with families to help them develop a better understanding of family needs and concerns.

T

HE

SFCD

N

EWSLETTER

...

...keeps parents and professionals updated on resources, legislation, and services.

More than 6,026 people received the quarterly

Newsletter in 2004.

What the Numbers Mean:

In 2003 Support for Families saw major increases in phone requests and participation in Support

Groups. Those numbers have remained steady in 2004. This past year we have had

• a great increase in family participation in activities at satellite facilities in San Francisco neighborhoods (up 189%!) and an increase in education opportunities and involvement: the number of workshops, trainings, and clinics increased 27% from

2003, and total attendance rose 62%.

• Of these, 295 families received the Newsletter in

Spanish; 170 received it in

Chinese.

O

NLINE

R

ESOURCES

...

The SFCD website contains information on our services and upcoming events. A bulletin board facilitates family-to-family communication. The website also provides important links to community resources, information on legislation, and opportunities for involvement.

The SFCD website received

48,148 “visits” (roughly equivalent to the number of different people visiting the site) during 2004.

F

AMILY

S

PECIAL

E

VENTS

...

...provide relaxing, fun opportunities for families to get together and enjoy themselves.

More than 1,000 parents, children and enthusiastic volunteers attended free family events during 2004, including Walk & Roll,

Arts and Crafts Day,

Halloween Carnival, and a

Holiday Ice Skating Party.

Support for Families Annual Report 2004 Page 3

Collaborations

Support for Families actively collaborates with agencies and service providers in San Francisco and throughout

California to improve the services and systems that affect families of children with disabilities and special health care needs.

The San Francisco Improving

Transition Outcomes Project

(ITOP) Interagency Council, which began in the fall of 2004, is our newsest collaboration. Support for Families and Jewish

Vocational Services are working with agencies throughout the city to improve coordination of services for youth with disabilities who are transitioning to adulthood.

Open Gate Family Resource

Center Collaborative provides family access to a wide range of services and supports. Support for

Families is lead and fiscal agency.

Child Care Inclusion

Challenge Project: Support for

Families is a member of this collaboration that helps insure that families have access to inclusive child care.

Family Voices of California:

Support for Families coordinates

Family Voices activities statewide.

Family Voices works to improve access to health care for children with special health care needs.

High Risk Infant Interagency

Council: Support for Families is fiscal agent and active member of this effort to facilitate coordination of services for children birth to five who are atrisk for developmental delays or other disabilities. HRIIC staff and the HRIIC Roundtable are housed at Support for Families offices.

Parent Training and

Information Centers (PTI)

Region 4 Consortium: SFCD works with other PTIs to coordinate activities in a 12county region of Northern

California

Family Resource Centers

Network of California: SFCD is fiscal agent and participant in this collaboration of 55 Early

Start Family Resource Centers throughout the state.

Who Are the Families We Serve?

MOST FRE-

QUENTLY REbehavior-

IEP- childcare- assess-

0 100 200

NUMBER OF REQUESTS

Primary

Concerns of

Families who

Contacted

300 400

Families of children with disabilities come from all walks of life and all income levels. Because Support for

Families does not have eligibility requirements, we can assist families of children with any kind of disability or special health care need, including learning disabilities, behavior disorders, and children at risk for disabilities.

Latino 28%

Caucasian

Unknown or declined to state

Other 4%

Multiethnic

4%

Ethnicity of

Asian/Pac

Isl 21%

African

American 19%

0-5:

43%

6-18:

55%

over 18:

Ages of children/

Spanish

Cantonese

Mandarin 1%

Tagalog 1%

Other 5%

English

67%

Primary languages of

Support for Families Annual Report 2004 Page 4

One Family

Dear Support for Families

Staff, Directors, and

Volunteers:

Each year at holiday time our family makes a donation to

Support for Families; we always feel it important to support an organization that has done so much for us. This year I wanted to let you know more specifically how much you mean to our family, instead of just sending along the check in the envelope.

We have made use of many of the workshops offered on IEPs, transition, and inclusive education, to mention just a few.

The Resource Fair ...is also a wonderful place to become educated, connect with other parents, and learn about other organizations and programs available for our children with disabilities.

Most of all, we have been very grateful that SFCD has, for many years now, offered the San

Francisco Bay Area Prader-Willi

Syndrome Support Group. When my husband and I first received our son’s diagnosis of Prader-

Willi Syndrome (PWS) fourteen years ago, there was no local support group. We were only given the name and number of one other family that had a child with PWS and was willing to talk about it. Now we have been participating in SFCD’s PWS

Support Group for at least six years.

Parents of children with

PWS have unique needs and situations, and it is a wonderful thing to be able to meet together to share our strategies and information to support each other. ..

SFCD has provided meeting space, advertising and mailings, childcare, and qualified and dedicated facilitators for this group over the years. .. SFCD has always had staff members available on the weekends to open up the meeting space and provide the quality childcare needed to assure parents time to meet together. In addition, beginning in 2005, SFCD has agreed to an increase in meetings and found us a facilitator for a sibling support group to meet in conjunction with our parent support group. All of this has been provided to our

PWS families at no charge… an amazing feat.

We are so grateful for SFCD, for all it has done for our PWS families, and all the education and advocacy and support it provides to all families of children with disabilities.

Thank you for providing our family with the support we so desperately need.

- Michelle S. Donaldson

Assessing Our Impact

Numbers, of course, tell only part of the story.

As in previous years, Support for Families asked families to let us know if, and how, our services have made an impact.

We’ve been very gratified by their responses. In follow up surveys of more than 200 families in 2004:

• 97% felt less isolated and/or better prepared to solve problems;

97% became more knowledgeable about resources or services;

95% felt better prepared to advocate for their children;

98% were able to obtain at least some of the services their child needed because of the help provided by Support for Families.

Support for Families Annual Report 2004 Page 5

Thank

You…

...to the many individuals, businesses, organizations, and foundations supporting

Support for Families in 2004

ORGANIZATIO

NS,

BUSINESSES,

&

CORPORATIO

NS

$2,500 and above

Farella Braun &

Martel

GATX Captal

Corporation

Pamakid

Runners

Zephyr Real

Estate

$1,000 -

$2,499

Fidelity

Investments

Physician's

Reimburseme nt Fund

Pi Kappa Phi

SF State Push

America

$500 - $999

Anonymous

Bank of

America

Matching Gifts

Kaiser

Foundation

Health Plan

Physicians of

Pan-Med, Ltd.

Rochester Big

& Tall

Safeway Store

# 592

San Francisco

Millwork

$100 - $499

Amgen

Foundation

Applied

Materials

Genentech

Employee

Giving

Program

Little Gators

Preschool

Stuart Hall

School for

Boys

The San

Francisco

Foundation

Employee

Matching Gifts

To $100

ABC Jewelry

Import, Inc.

Cadence

Design

Systems, Inc.

Eldi's Beauty

Salon

Jaime's Jewelry

Premier

Eyecare

Optical

Texi's Jewelry

INDIVIDUALS

$5,000 and above

Jane Lapides &

Murray Cahen

Jo Cummins &

Barry Milgrom

Support for Families gratefully acknowledges gifts received in 2003 from the donors listed here. We apologize for any omissions , errors or misspellings. Please contact us if there is an error so we can correct our records.

Sonia Delen

Dahi Donnelly

Peggy & Millard

Drexler Family

Foundation

Juno & Robert

Duenas

Elizabeth &

Julian

Eisenstein

Shelley & Andy

Forrest

Alison & Brock

Fuller

Linda & Robert

Gilbert

Anne & Randall

Greene

Michael Haas

Catherine &

David

Hayashida

MD

Nancy Hudgins

Nancy Iverson

MD

Judy Janec

Katherine &

$2,000 -

$4,999

Lynn Fuller &

Bill Bivins

Lisa & Stephen

Shirley

$1,000 -

$1,999

Gordon

Atkinson

Bruce Deming

Virginia Kahn

Marjorie

Lewisohn

Peggy & David

Rothman DDS

Irma & Ralph

Thaler

Jan & Jim

Watson

Liz & Jason

Zada

$500 - $999

Deane Bivins

Audrey Carlson

Drs. Lucy &

William Crain

Donaldson

Beckie & John

Fanous

Laura Fisher

Yvel Flemming

Kathleen &

Charles

Franklin

Patricia

Hampton

Beverly &

Michael

Hennessey

Barbara &

Herbert

Herman

Elizabeth &

Brian Joseph

Marla & Tim

Kelly

Ann Lanoie

Annette &

Janes Lee

Betty & Nick

Lituanio

Peter Mansfield

Alan Marcus

Nion McEvoy

Norma & Albert

Moisio

Valerie Pierce

Rony Rolnizky

George Lee

MD

Michele &

Michael Levis

K. Ira McEvoy

Kathleen &

Stephen

Meeker

Mary Houle &

David Phillips

Mimi & Marc

Spier

Stuart Hall

Kindergarten families

Linda & Ray

Tung

$250 - $499

Anonymous

William Bernell

Marie Acacia &

Jennifer

Borders

Joanna & Mark

Cameron

Frank Caufield

Theresa Collins

Joan & David

Crowell

Michelle &

Kevin

Itelson

Linda Justice

Murray Kenney

Sheila Doyle

Kiernan

Marjorie Shaw

& David Kobe

Lori Kochiyama

Kathryn Krusen

& Randall

Kostick

Jacob Lalezari,

M.D., P.C.

Gregory

Lamdau

David Lazerwitz

Bill

Lewandowski

Ellen Ann

Baumann &

Laurence

Lofberg

Howard Louie

Jane & Allan

Low

Ernest

Maggioncalda

Irene Manfredi

Linda Mickelson

Carol Miller MD

Judith Marrocco

& Matthew

Michael Farmer

Jill Holtz & Joe

Feldman

Lucy Flanigan

Dorothy

Fletcher

Lori Marshall &

Bill Fricker

Gary Gin

Suzanne &

Louis Giraudo

Bernice

Goldmark

Joe Goldmark

Kathi Goldmark

Sally Sehring &

William

Gonda

Karen Kerner

Goodman

Carla & Hank

Greenwald

Mary Ann

Hauck

Daniel Herman

Ingrid Hester

James Hormel

Mary Elizabeth

Warner &

Laurent

Huguenin

Roz & Steve

Miller

Kristine Erin

Moser

Gabriel Murphy

Daniel Niles

Marjorie &

Leonard

Patane

Quyen D. &

Calvin Pon

Shirley Reece

Sue & Steve

William Black

Georganne &

John Boerger

Margaret &

Henry Brodkin

Johanna Buck

Barbara

Tomash &

Edward Bussa

Elaine & Steve

Butler

Barbara

Callaway

Pat Camarena

Martha

Casselman

Linda & Michael

Cassetta

Debra Celis

Ruby Kit Fung

& James

Cheng

Shauna

Chiappella

Diane & William

Clarke

Alexandra &

Scott Clifford

Christopher

Coughlan

Mildred & Jeff

Crear

David Salopek

Alyson Sinclair

Valerie Pierce &

Michael Stortz

Jill Sweringen &

Barbara

Schoeffel

$100 - $249

Anonymous

Arthur &

Deborah Ablin

Kathleen

Anderson

Lorraine & L.B.

Arnaudo

Janet Green &

Richard Babb

Anne Marie Siu

Yuan & Peter

Bacchetti

Lynn & Michael

Beach

Arnold

Bernstein

Michael Bien

William Bivins,

Sr.

Tessa Rouverol

Callejo &

Laura Cross

Audrey deChadenede s

Kathleen &

David deChadenede s

Andrew Dubin

Lisa Duncan

Alex Echeguren

Camilla

Eckersley

Support for Families Annual Report 2004 Page 6

Rosen

Sterling Ross,

Jr.

Steve Schurr

Keta Bill & Joel

Selvin

Paul & Sofia

Seregin

Antje Shadoan

Lisa Louis &

Hitoshi

Shigeta

Tonna To Li

Shu

Elizabeth

Silvestri

Fern Smith

Laurel Kloomok

& Ned Smith

Rocio Smith

Steven

Sockolov

Sally Spencer

Janet Stafford,

MD

Linda Stevens

Julia Strawn

Darian & Rick

Swig

Jeanette &

Seymour

Thaler

Leslie Trook

Audrey &

Russell

Vernick

Jan Wagner

John Walsham

Deborah &

Fredic Warren

DDS

Gwendolyn

Wong

Carolyn Wright

Edward Yaffa

Jeannine

Yeomans

Mark Andrew

Zeeman

Peter Zelter

Benita

Zimmerman

Phyllis & Philip

Ziring to $100

Anonymous

Barbara

Bevan-Abel &

Ellen Abel

Peggy O'Grady

& John

Ahlbach

Paula

Alexander

Jacques Amiel

Robert

Andreatta

Peddie

Arneson

Judy Bachman

Mr. & Mrs.

Bruce Bailey

Carrie Barnett

Gretchen Beck

Ilana Bernstein

Nathalie

Kakone &

Laurie Blavin

Mary Jane

Borrelli

Fanny & Elias

Botto

Beverly Boyd

Roselee

Brooks

Paulette Brown

Twila Brown

Victoria & Bill

Bruckner

Etta Bryant,

MD

Tracy Burt

Lesly Bush

Cassandra

Calhoun

Berta Campos

Isabel &

Milagro

Campos

A. Capio

Josephine

Cassetta

Margaret &

Robert

Cassetta

Claire Castell

Sarabeth

Chapman

Jonelle Chase

Martha

Kerri Cordova

Hollie Marie &

Terry Cooper

Cotten

Maurice Cridlin

Hongha Crystal

Nora & Robert

D'Acquisto

Jesus de la

Cruz

Edie deChadenede s

Gina DeLoia

Elizabeth Derr

Rebecca &

David

Donohue

Carolyn Doyle

Ralitza

Doynova

Rebecca Duong

Mark Erikson

Mr. & Mrs.

Peter Evangel

John Falbo

Janice Farley

Janet Shalwitz

& Burt

Feuerstein

Ellen & Barry

Fishman

Chesley

Ruby Tsang &

Ken Cheung

Monica Chew

Joyce Chisholm

Catherine

Christensen

Alycia & Robin

Chu

Jennifer

Chueng

Ruth & Richard

Churchill

Julia Cody

Carmel & Frank

Coghlan

Marsha Cohen

Marilyn & Larry

Cohen, M.D.

Amber Collins

Alexis

Contreras

Irene Contreras

Jesse, Esther &

Selena

Contreras

Juanita

Contreras

Margaret

Kendrick &

Angel

Contreras

Theresa Flynn

Jean Fontana

Diane Foon

Dean Fosco

Jacqueline Fox

Susan Gemma

Avraham

Valentino

Giannini

Reza Giavalve

Vincent &

Marcellina

Gibbons

Hornbostel

Pamela Culp

Hunt

Constance

Hutchason

Desiree

Inocencio

Dawn Isaacs

Kitty Jacobson

September

Jarrett

Rosa Jimenez

Charlene Jow

Cheryl &

Wayne Jueal

Betty Kamen

Tatyana

Kardonskaya

& Vladimir

Kardonskiy

Kathryn

Kathman

Regina Karson

Louise Katz

Barbara

Kendrick

Kathi & Paul

G. Gloria

Gillogley

Philip Go

Mary Godfrey

Katherine

Guthorn

Goldstein

Nancy Grant

Nancy & David

Gray

Aracely

Guevara

Sue & Larry

Hanson

David Hardie

Jeri & Van Hart

Mabel & Hector

Hernandez

Patty & Roy

Herstein

Gretchen

Hester

Lisa Hester-

Joseph

June Hew

Paula & Arnold

Hider

Mary & Paul Hill

Lisa Hirschkop

Stephanie &

Michael Hoff

Linda

McGhee, Jr.

Moira Walsh &

Michael

McQuaid

Patricia &

Thomas

McRae

Ignacio Medina

Stan Melby

Ralph Miller

Suzanne Miller

Susan &

Richard Mills

Kendrick

Renny & Tobin

Kendrick

Dennis

Kennedy

Jill & Jason

Kimbrough

Katy Shaw Kiso

Kristy Kocher

Marilyn Zoller &

Joshua Koral

Mary-Ellen

Kreher

Bevereley Lam

Blanche Le

Tran & Phat

Truot Lam

Claudia Lange

Lynn & Ron

Laupheimer

May Shun

Kwan & Yet

Tim Lee

Cheryl

Tomlinson &

Margaret Levy

Carol Holland &

Martin Lifshitz

Sylvia Lifshitz

Charles Ligeti

Elizabeth Lim

Lisa Litsey

Donna & Louis

Lituanio

Jennifer Lorvick

Mayling & Hon.

Harry Low

Andrea Lucas

Martin &

Lorraine

Magid

Natalie

Manfredi

Pip Marks

Marian Marsili

Caroline

Mathers

Steve McCarthy

Sally & Steven

McDonald

Josephine

McGann

Diane & Patrick

* Some of the above workplace campaign gifts and pledges were made during 2003, but, due to campaign processing, did not reach

SFCD until 2004.

FOUNDATION

S:

Ashbury

Children’s

Foundation

California

HealthCare

Foundation

Callison

Foundation

Five Bridges

Foundation

Stanley S.

Langendorf

Foundation

San Francisco

Foundation

Stulsaft

Foundation

True North

Foundation

Walter and

Elise Haas

Fund

GOVERNMEN

T GRANTS

AND

CONTRACTS:

Administration on

Developmenta l Disabilities,

U.S. Dept. of

Health and

Human

Services

Maternal and

Child Health

Bureau, U. S.

Department of

Health and

Human

Services

Office of

Special

Education and

Rehabilitation,

U.S. Dept. of

Education.

California Dept. of

Developmenta l Services

California

Department of

Education

California State

Council on

Developmenta

Support for Families Annual Report 2004 Page 7

Program Highlight:

Information and Resource Conference

It’s a one-day, one stop comprehensive educational extravaganza: the annual Information and Resource Conference coordinated by Support for Families, with event partners including the San Francisco Unified School District,

Golden Gate Regional Center,

California Children Services, and many other organizations.

At the annual March event, parents, professionals and the general community can attend workshops on a variety of topics presented by experts in their fields — everything from

Early Intervention through

Transition to Adulthood.

SUPPORT FOR FAMILIES

OF CHILDREN WITH DISABILITIES

2601 Mission Street, Suite 606

San Francisco, CA 94110

(415) 282-7494

FAX (415) 282-1226 at Open Gate Family Resource

Center:

2601 Mission Street, Suite 300

San Francisco, CA 94110

(415) 920-5040

FAX (415) 920-5099

Scores of exhibitors — including disability agencies, advocacy organizations, and providers of recreational, therapeutic, healthcare, financial, and legal services — are available to provide information and answer questions. An Assistive Technology demonstration room provides a popular

Conference activity.

At the 2004 Conference, more than 198 family members, 89 professionals and 74 exhibitors joined dozens of volunteers at John O’Connell High

School. Several of the workshops were filled to capacity.

Admission to the event is always free of charge, with free childcare and interpretation services; even lunch is provided free of charge to encourage family participation.

2004 Financial Sum-

Complete audited financial statements are available at the Support for

Families office.

Income

$1,647,882.

January 1—December 31, 2004

Expenses

$1,671,869.

January 1—December 31,

Government

Grants

81.3%

(includes collaborations)

Foundations

Other

1.9%

Individua ls 6.4%

Corporate

Contributio ns

.7%

Program

Services

85% c

Management and General

12%

Fundraising

3%

Board of

Directors*

Bill Bivins, President

Bruce Deming

Gretchen Hester, Vice

President

September Jarrett

Allan Low, Esq.

Mary Phillips

David Rothman, DDS,

Treasurer

Lisa Shirley

Alyson Sinclair

Gina Vasiloudis MPT,

Secretary

Advisory Board*

Janet Green Babb, RPT

Mim Carlson

Liane Collins

Lucy Crain, MD

Mildred Crear, PHN

Suzanne Giraudo

Suzanne Graham, RN,

PhD

Carla Greenwald

Jack Hodges, Attorney

Nancy Hudgins,

Attorney

Pat Jackson, RN

Jude Kaye

Betty Lituanio

Peter Mansfield

Dennak L. Murphy,

MSW

Sally Spencer

Diana Tang Duffy, MD

Robert Verhoogen, MD

Support for

Families Staff*

Juno Duenas,

Executive Director

Helen Rossini Co-

Founder

Carolyn Adams,

Community

Resource Parent

Nina Boyle,

Community

Resource Parent

Supervisor

Elaine Butler, Librarian

Wendy Byrnes, ITOP

Coordinator

Emilio Crixell, Jr.,

Community

Resource Parent

Jo Cummins,

Educational

Coordinator

Audrey deChadenèdes,

Special Events

Coordinator

Irma Guerrero,

Administrative

Assistant

June Hew, Parent

Health Liaison/

Community

Resource Parent

Judy Janec,

Information

Management

Specialist

Bill Lewandowski,

Director of

Operations

Patricia Mejia, Open

Gate Coordinator

Veronica Pacana,

Community

Resource Parent

Peggy O’Grady,

Mental Health

Coordinator

Alvin Salonga,

Systems * as of 2/1/05

Administrator

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