Tri-Counties Associationfor the Developmentally Disabled520 E. Montecito Street, Santa Barbara, CA 93103

NONPROFIT ORG.U.S. Postage

PAIDSanta Barbara

CA 93101

Permit No. 359

TRI-COUNTIESREGIONAL CENTER

Main Office520 E. Montecito StreetSanta Barbara, CA 93103Tel 800.322.6994Fax 805.884.7229

Oxnard2220 E. Gonzales Rd., Suite 210Oxnard, CA 93036Tel 800.664.3177Fax 805.988.7157

Simi Valley1919 Williams St., Suite 201Simi Valley, CA 93065Tel 800.517.2524Fax 805.522.8142

San Luis Obispo3450 Broad St., Suite 111San Luis Obispo, CA 93401-7102Tel 800.456.4153Fax 805.543.8725

AtascaderoHotel Park Business Center6005 Capistrano, CA 93422-7219Atascadero, CA 93422-7219Tel 800.771.6898Fax 805.461.9479

Santa Maria1234 Fairway Drive, Suite ASanta Maria, CA 93455Tel 800.266.9071Fax 805.922.4350

I have completed two exciting years as Presi-dent of the Board of Directors for Tri-Coun-ties Regional Center. As someone who hasbeen around the developmental servicessystem for decades, I found that there is al-ways something new to learn.

The State Of California is in its worstfinancial deficit in history –now at $35 billiona n d

expected to rise. Nonprofit organizationsfunded by the state, like TCRC, are fac-ing a very serious time. Awareness is oneof the most important things I can requestof you because it will make you a better

advocate for yourself,your family, or thepeople you serve.

T h e T C R C b o a r do f directors consistsof clients, familymembers, and pro-

From the Board . . .by Jim Kester, President

FRONT (l to r): Warren Mattingly, PeterStoner SECOND ROW (l to r): JimCarbone, Margaret Cortese, Ph.D., KimOlson, Ingrid Innecken, Gerri Knilans,Jim Kester BACK ROW (l to r): MelanieTopp, Kathy Redmond, Bob Costello,Hamid Hosseini, Jesse Ornelas NOT

PICTURED: Carmen Ramirez, Harriet Levine

I wish to receive this publication by email insteadof through U.S. Mail.Email address I receive multiple copies - please correct.I no longer wish to receive this publication.

NAME

AGENCY (IF ANY)

ADDRESS

CITY STATE ZIP

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Let us know . . .

fessionals who volunteer their time andthey need your support – particularly now.There are major cuts to supports and ser-vices being considered by our legislatorsthat will impact each of our lives and thehealth and safety of clients.

Tragedy can occur if we let it. It’s up to usto protect the rights of people with devel-opmental disabilities and continue to setthe example for the rest of the nation.

Jim KesterPresident SUMMER 2003

Persons with developmental disabilities will live life as full and active members of their community

“Trieana Moon’s voice fills a crowdedroom while she bangs out ‘Hound Dog’on a piano,” says correspondent AliciaDoyle in the April 9, 2003 issue of theVentura County Star newspaper.

The 28-year-old Oak View artistperforms music at openings and benefitsin Ventura, Santa Paula, and more. Shecan be found every Monday morning atthe Little Tree House in Ojai, a SeniorActivity Center, singing anything fromBillie Holiday to the Beatles and MariahCarey. “Wherever she performs, faces

light up and it doesn’t make anydifference what she plays,” according toTrieana’s mother, Carolyn.

She sings day and night. Ask her to turn upthe volume and she’ll belt it out like anamateur-hour gospel shouter. Hand her amike and she’ll work the room like a Vegaslounge singer. “How you all doin’ today?”she booms in a voice that sounds especiallyhuge for someone less than 5 feet tall. “You’relookin’ mighty fine! Are you feelin’ fine?”

- Los Angeles Times, Sunday, July 4, 1999continued on page 3 . . .

Santa Barbara • Ventura • San Luis Obispo www.tri-counties.orgA PUBLICATION OF TRI-COUNTIES REGIONAL CENTER

MicroEnterprise . . . Let your heart beam in

Summer 2003 TRI-LINE | 1

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In This Issue

MicroEnterprise ............................. 1

From the Executive Director ....... 2

On The Road to Enterprise ....... 4

Enterprise Success ...................... 5

Advocacy ........................................... 6

Success at TCRC ........................... 8

Department Spotlight .................. 9

Parent Profile ............................... 10

Consumer Corner ...................... 10

Important Dates ......................... 11

Foster Grandparents ................ 11

Office Updates ............................. 11

From the Board .......................... 12

2 | TRI-LINE Summer 2003

I m p o r t a n t D a t e s Foster Grandparents Foster Grandparents

Office Updates . . .

by Omar Noorzad

From the Executive Director From the Executive Director MicroEnterprise Development Achieving Self-Sufficiency

The economic crisis in Californiais a call for communities across thestate to become more innovativein the way people with develop-mental disabilities receive sup-ports and services. At Tri-CountiesRegional Center, new and cuttingedge ideas that bring freedom andresponsibility to people with de-velopmental disabilities will beclosely explored. MicroEnterprisedevelopment is one of those ideas.It is a key component to the con-cept of self-determination and atool for people to achieve a goalof financial self-sufficiencythrough business ownership.

It is the belief at TCRC that everyperson with a developmental dis-ability has the same right to be self-determined as all people. Foryears, people with developmentaldisabilities have stated loud andclear that they want to have expe-riences that enable them to takemore personal control and makechoices. Capturing this opportu-nity will push society and policyfurther away from the traditionalthinking that people with devel-opmental disabilities can only beserved by special programs to

knowing they can be and are en-trepreneurs.

While MicroEnterprise develop-ment is rare in California, it is cut-ting edge and in the years aheadwe will hear and learn more aboutits success. Therefore, this issue ofthe Tri-Line will be an importantexercise for all of us, as we openour minds, think of our futures,and study how MicroEnterprisedevelopment might tap into theself-employment potential foryourself or someone you careabout.

Currently, people with disabilitiesare the most underemployed seg-ment of society, with an unem-ployment rate of nearly 70 percent.Unfortunately, there are major bar-riers for people who wish to be-come more self-sufficient. Mostpublic assistance programs haverules that restrict what a personwith a developmental disabilitycan have in assets, and federalpolicies discourage a departurefrom the rolls of the Social Secu-rity system, because people will bepenalized.

However, we are entering a newtime, and policy is gradually shift-ing and becoming more sensitiveto providing the needed resourcesfor people with developmentaldisabilities to lead increasingly self-determined lives.

At TCRC, we embrace opportuni-ties to bring people the freedom,authority, support and responsibil-ity over their lives they havelonged to achieve. People will dis-cover individual gifts andstrengths they were previouslyunaware of, become successfulentrepreneurs, and contribute totheir communities in more waysthan ever before.

I look forward to learning of yourthoughts on MicroEnterprise de-velopment and other features inthe Tri-Line that promote the con-cept of self-determination.

ATASCADERO SAVE THE DATE . . . On October 18th, Par-ents Helping Parents and TCRC will be sponsoring a “FiestaFamiliar” for our Spanish-speaking consumers and families inPaso Robles. This is the first such event in SLO County and weare hoping that all of our Spanish-speaking families will beable to attend.

SANTA MARIA ICCAT, Inclusive Childcare Committee Ac-tion Team, a sub-group of the Santa Barbara Children’s Com-mission, has recently received Prop 10 funding to develop aprogram that is aimed at integrating kids with disabilities intoregular childcare programs. For further information, pleasecontact Jill Baker at the Santa Barbara County Child Care Plan-ning Council, (805) 964-4710 ext. 4473, sbcccpc@sbceo.org

SAN LUIS OBISPO The SLO office serves approximately1000 consumers, with a staff of 16 service coordinators, re-source development, quality assurance, support, psychologyand medical staff. This office serves persons living from north-ern Santa Barbara County line up to Ragged Point south ofMonterey County line.

SANTA BARBARA During Fiesta in Santa Barbara, stafffrom the SB TCRC Consumer Services Department volunteeredtheir time and energy at the South Coast Special OlympicsTaco Booth. The Taco Booth was a fund raising event for SouthCoast Special Olympics. Service Coordinator Eli Soto andManager Dan Van Keuren spearheaded the event. BothChildren’s and Adult Team staff participated.

SIMI VALLEY Due to a rise in the number of children withdevelopmental disabilities in the East Ventura County area, fourservice coordinators have been added to the staff, whose as-signments are Early Start and children’s services.

OXNARD On May 30, the Group Service Coordinationproject from the Oxnard team organized an immigration work-shop for monolingual and Spanish speaking families. ElConcilio, a local organization that provides services to mono-lingual and Spanish-speaking families, such as counseling andadvice on immigration issues, made a presentation in the Ox-nard office conference room to about 15 families.

On May 30, 2003, the Tri-Counties Regional CenterFoster Grandparent and Se-nior Companions Programheld their yearly recognitionluncheon. Ninety-five vol-unteers were honored fortheir service to children andadults with developmentaldisabilities. Guest speakersthis year were OmarNoorzad, Executive Directorof Tri-Counties RegionalCenter; Stephen Day, TCRCconsumer advocate; CarolynWhalen, ARC WagonWheel; and Pam Jirkovsky,teacher at Conejo-Triggs El-ementary School.

TCRC BOARD MEETINGSSeptember 13 ...... San Luis Obispo CountyOctober 11 ........... Santa Barbara CountyNovember 1 ......... Ventura CountyDecember 6 .......... Santa Barbara County

TOWN MEETINGSAugust 26 .............. Paso RoblesSeptember 3 ......... Santa MariaSeptember 17 ...... Santa BarbaraOctober 1 .............. Oxnard/Simi

Please call 560.3757 ext. 15 for information on times and locations.

10 | TRI-LINE Summer 2003 Summer 2003 TRI-LINE | 3

Parent Profile . . . Jim Ross

MicroEnterprise. . . continued from page 1

As she thinks about her futurein music, Trieana indicates thatone day she expects to performat the Hollywood Bowl, andagain at Libby Park in Ojai.

When asked how she might getinvited to perform at theHollywood Bowl, she said, “Idon’t know, I’m gonna talk tosomebody about that.”

Trieana has advice for otherssearching for their own gift andtalent. “I just want to tell

everyone out there – all thepotential musicians in the world– go for it, and let your heartbeam in. Everybody has aspecial gift. Everybody cansing.”

Trieana’s CD can be purchasedfrom www.PlanetCD.com orfrom the Arc Ojai EnrichmentCenter, 210 Canada Street, Ojai,CA 93023, phone 805-646-5186.The cost is $10.00.

Trieana doesn’t read music, butwhen she hears a song she likes,a few minutes later she is play-ing it on the piano. “If she hearsit, she can play it,” said Carolyn.“Music is everywhere in herbody.”

Trieana also creates and ar-ranges her own music. “I justsit at the piano and think andcreate,” she says. “I just go withthe flow.”

For 4-1/2 years, Trieana at-tended Hope University in Or-ange County, a school for adultswith developmental disabilitieswho are gifted in music and art,and now she has released herfirst CD, entit led simply“Trieana.”

Jim Ross is Megan’s dad. He is also a respected member

of the Tri-Counties Regional Center staff as its Consumer

Services Manager, for the Santa Barbara Children’s Team.

In his management position, Jim brings a perspective of

serving and supporting the needsof children with developmentaldisabilities that both professionalsand families alike deeply appre-ciate and respect.

It has been only a year since Jimand his wife, Jan, moved theirdaughter, 28 years old, into ahome of her own in a Goleta tractneighborhood. “When Megancomes to visit her mother and me,she is clear about where home is.It makes me feel great when shesays, ‘I want to go home’,” saidJim.

Jim’s greatest concern at this pointin Megan’s life is not the recentlydiscovered independence she de-serves as an adult, but what havocthe state’s fiscal crisis could createin her life. “It may force her tocome back home, because sup-ported living services may not bepossible for her any longer, andthat would be such a huge stepback for her.”

“We must continue to fight thegood fight,” claims Jim. “Fundingis necessary for people like Megan

to live like other citizens. We mustget more involved in making af-fordable housing available andwork with the Housing Authorityand experts that exist in our midst,like CHANCE (the Coalition forHousing Accessibility, Needs,Choices & Equality, Inc.).

“We need to get creative and makeit a priority.”

Consumer Corner . . . Judy . . . Finally, a place to call “home”

Judy Gilder has lived at Hillside House, a 59-bed facility in Santa

Barbara, since she was nine years old. Today she is sixty-two.

For the past twenty-five years, Judy has longed to have the

opportunity to move into an apart-ment or house to call “home.” Shehas watched friends leave HillsideHouse year after year.

Over the decades, Judy appliedfor housing in several differentdevelopments in Santa Barbara,Goleta and in Carpinteria. Butnothing ever materialized. Whenshe discovered that United Cere-bral Palsy (UCP) was developinga 17-unit complex in Goleta, she

placed her name on a waiting listwith dozens of others.

Finally, in the early part of 2003, themulti-million dollar project,funded by a variety of layered fed-eral, state, county, city and privatefunds and grants, (including fund-ing from Tri-Counties RegionalCenter) was nearly complete.

With her long-time friend and ad-vocate, Margaret Dodd, by her

side, Judy anxiously attended aninterview conducted by the panelof agency representatives respon-sible for deciding who would re-ceive housing and who would not.

At the end of the interview, Judyfelt confident she would not bechosen and she would die at Hill-side House. She was wrong.

Congratulations on your newhome, Judy!

PHOTOGRAPH: MARIE GREGORIO-OVIEDO

IN THE NEWS

When Danny was born more than twenty years ago,

Julie Barnes wondered what she should expect from her

son in school as a student, and eventually as an adult

On the Road to Enterprise . . . An entrepreneur in the making

FIRST 5 VENTURA COUNTY FAMILYSTRENGTHENING PROJECTTCRC and Rainbow Connectionreceived a 3-year grant of$220,000 per year

First 5 is the result of the statewideProposition 10 initiative sponsored byRob Reiner to allocate tobacco tax in-come to support the needs of childrenages 0-5 and their families to maxi-mize early intervention opportunitiesfor young children to increase schoolreadiness.

This project will enhance the continuumof care, strengthen community connec-tions and reduce the isolation of familiesidentified with developmental disabilities.

Rainbow Connection Family ResourceCenter will expand its libraries andmobile outreach vehicles with booksand videos on disability issues.Rainbow’s Parent-to-Parent mentor ser-vice will be expanded through the re-cruitment and training of parents ofchildren with disabilities who can sharetheir experience and mentor new par-ents with developmentally disabled in-fants and toddlers.

TCRC has a successful pilot programknown as the Leadership Project, whichhas trained TCRC consumers and familymembers in advocacy at both local andstate levels. Expansion of this project isanticipated in Ventura County as moreparents of Early Start children gain con-fidence and refine their self-advocacyskills on behalf of their children.

Respite services will be expanded toprovide the specialized care infants andtoddlers need so that their parents canparticipate in a variety of training andinterpersonal support opportunities oftheir own choosing.For more information contact LaurieJordan at Rainbow 485-9643/TC1TL@tri-counties.org or ColleenDuncan, Resource Developer.

Lorna Owens, Chief Financial Officer

Department Spotlight Department Spotlight Department of Finance and Administration

4 | TRI-LINE Summer 2003 Summer 2003 TRI-LINE | 9

working and living in the commu-nity. “We decided he would bearound normal kids doing normalthings and we should expect themost,” said Julie.

When Danny first entered publicschool, the Individuals with Dis-abilities Education Act, the 1975landmark legislation that affordsall children the right to a publiceducation, had just been passed.With her determination to giveDanny every opportunity to beincluded, the first brick was laidfor the inclusion of children withdisabilities in public school in SanLuis Obispo. “I went to the prin-cipal and said I wanted to enrollDanny in kindergarten. I thoughtshe would roll out of her chair.”

It wasn’t long before a kindergar-ten teacher approached Julie andsaid she would like Danny to bein her class, and things started tofall into place. Over the years,Danny has not always been in-cluded, because the support heneeded was at times impossible tofind. “We struggled over the yearsto get him included as much aspossible.”

Once Danny graduated fromschool, Julie and Danny’s fatherhelped him design an individual-

ized day program.Through trial and error,“Danny’s Duds” evolved.

Danny’s first business venturestarted as a volunteer foldinglaundry for neighbors. His skilland dependability was becomingmore valued, and it didn’t takelong before he was getting paid forthe service.

Last year, Julie attended a self-de-termination conference in Las Ve-gas and participated in training onMicroEnterprise development. Inthe training, “We discovered thatDanny likes people and if hedoesn’t have a lot of pressure, butprovides a service to people, hedoes really well.” The conferencewas the beginning of developinga business plan for Danny. “It is away of letting people have controlof their lives, dream and have dig-nity and respect.”

Now keeping her eyes and mindopen to all that is possible forDanny as an entrepreneur, Juliewas in the Santa Maria airport oneday, not many months ago. Shelooked around, eventually turnedto Danny and said, “What wouldyou think if you had a little coffeecart in here and sold some bagelsand muffins? Your customers

would be the airport staff and thetravelers.”

Danny said, “Yes, but I will needhelp.”

Since, Danny has allowed himselfto dream and be excited. But he isalso nervous. “The responsibility isfrightening to him,” said Julie. “Idon’t think anyone has asked himto be this responsible.”

Danny’s business will take time todevelop, but the time is well spentbecause, according to Julie, “It’s thenatural thing to do; it’s the rightthing to do.”

The Tri-Counties Regional Center (TCRC) Department of Finance andAdministration, under the direction of Lorna Owens, facilitates andsupports the management of the agency’s annual budget currently at$112.3 million. “TCRC, serving more than 8,600 consumers, continuesto be in strong fiscal condition based on recent audits,” notes Lorna.

The responsibilities of the department include all financial areas ofthe agency - budgeting, purchase of service and trust accounting, andregular operations accounting, which includes paying rent on regionalcenter facilities, purchasing supplies, and travel reimbursements.

The department is also responsible for compliance regulations, properand best practice record keeping, securing adequate insurance, con-ducting vendor audits, fiscal and legal analysis for program servicecontracts, and supporting the agency in achieving its Strategic Plangoals.

“We are always trying to work on improving processes to make thingseasier for service coordination staff, consumers, families and vendors,”says Lorna. This includes the way the department provides financialinformation to the TCRC board of directors, implements the Expendi-ture Plan, gives department managers more responsibility in main-taining budgets, and the ongoing update of TCRC policies and proce-dures.

Lorna attributes RCRC’s sound fiscal position to the strong team of 19staff and their experience.“The staff ’s experienceand helpful attitudes isnoticed by CPA and DDSauditors. The staff un-derstands what it takesto get the job done.”

FRONT ROW (l-r): LornaOwens, Phil Stucky, KathyZiemkiewicz, Stacey Garcia,Richard GrahamSECOND ROW (l-r):Randy Howells, PaulaSignorelli, Leslie Burton, Tina Piazza,Cathy Black, Sergio Quiroga, Lynda Bell,Gloria Pe, Lori Razo

includes cleft palate, congenitalheart defects, short stature andsometimes, mental retardation.

Molly was born dying of conges-tive heart failure and over thecourse of 15 years she had severalmajor operations, including herfirst open heart surgery at ageone.

As a child, Molly was diagnosedw i t h A t t e n t i o n D e f i c i tHyperactivity Disorder (ADHD)and by the time she reached 12years of age, she developed hal-lucinations and paranoid delu-sions requiring her first psychi-atric hospital visit, where shestayed for six weeks. “She wouldsee cartoon characters runningaround,” according to Dr. JimO’Hanlon, psychopharmacolo-gist on staff at Tri-Counties Re-gional Center.

Over the course of the next tenyears, Molly was hospitalized forpsychosis four more times andwas forced to move from herhighly staffed residential place-ments six different times. By thetime she was 18 years old, she hadattempted suicide, and by 19 shehad developed hypertension anda seizure disorder.

Two years ago, Dr. O’Hanlon wascalled in to review Molly’s case ata time when she had become veryaggressive and physically de-structive. After meeting Molly,and becoming familiar with herchallenges, Dr. O’Hanlon formeda team with her internist, a newneurologist, and the psychiatrist.Together, they worked with Mollyfor about a year.

During the course of his workwith Molly, Dr. O’Hanlon dis-covered that one of the genes shewas missing was at the root of allher psychiatric disorders. An en-zyme that metabolizes trans-mitters in her brain was not beingmade in normal amounts.

Dr. O’Hanlon selected an old drugthat would slow down transmit-ter production. Within two weeks,the epilepsy stopped and her hal-lucinations went away. WhenMolly was asked if she felt a changein her feelings, her response was,“I can’t get mad anymore.”

Molly was able to move to a lessrestrictive home and made the ac-quaintance of a young man. Thecouple fell in love, and late onenight Molly packed her bags andwalked seven miles to move inwith him. Molly has been in the

same living situation for sevenmonths. She terminated nearly allservices of Tri-Counties RegionalCenter and began to control herown SSI Disability benefits.

According to Dr. O’Hanlon,Molly’s past is an example of thecost of bad medicine. The expenseof numerous hospitalizations andh e r r e s t r i c t i v e r e s i d e n t i a lplacements were enormous. To-day, the public bears little cost atall.

Is it possible Molly got better h e r-s e l f – e x p e r i e n c e d a sponta-neous remission? “Possible, yes,but I don’t think so,” said Dr.O’Hanlon. “The only way we canreally find out is to take her off thedrugs, and if she became psychoticand the seizures returned wewould know for sure. But no one,including Molly, is willing to dothat.”

Note: Dr. O’Hanlon and the team heformed to help Molly published a casereport in the International ClinicalPsychopharmacology journal, March2003. For copies of the article, contactAlyson Delbrook at Tri-Counties Re-gional Center at (805) 962-7881 or goto the journal website atwww.intclinpsychopharm.com andrequest a copy.

Enterprise Success Through the Lens of a Camera

Every Sunday, Ali displays his artat the Santa Barbara Cabrillo Blvd.art show, where dozens of otherartists sell handmade jewelry, pot-tery, paintings, purses, clothing,and more. The art show is one ofSanta Barbara’s hottest tourist at-tractions.

“I’m in love with the art of pho-tography. The art show is some-thing I can count on and it makesme feel like I’m somebody – like ahuman being,” said Ali.

Ali does not have the use of eitherhis arms or legs and his brother,Sean, makes it possible for Ali tocontinue to pursue his love forphotography. “My brother helpsme out and buys equipment andsupplies for me. Otherwise, Iwouldn’t be a photographer. It isa very expensive hobby.”

During nearly every photo shoot,Ali’s brother is by his side. “Heputs the camera on the tripod onthe right hand side of my chair. Ilook through the camera and askhim to move the camera until it iswhere I want it to be. My brotherlooks at the light reading for me,and I tell him what to set the cam-era at. I look through the camerawhile my brother is focusing, andI tell him to stop when the image

is sharp. When everything is theway I want it to be, I say, ‘Shoot!’and he presses the shutter forme.”

When Ali completed high schoolat least two decades ago, hewanted to go to Brooks Instituteof Photography in Santa Barbara,but couldn’t afford it. Ali learnedthat the husband of a friend of hismother’s knew Ernie Brooks per-sonally, the founder of the insti-tute.

This contact is why Mr. Brooksagreed that Ali would be permit-ted to sit through classes, withoutcost, without credit and listen tothe instructors and learn what hecould. Ali didn’t have the propercamera equipment and wasn’table to complete every assign-ment. But, “I drove the instruc-tors crazy by asking a lot of ques-tions,” he said.

Ali sat through classes for threeyears at the Brooks Institute ofPhotography from 1984 through1987, completing the program, asany other student would havebeen expected to do. Toward theend of the program, Ali said to hismom,”“I wish I had just a piece of

paper to prove I had skills thatwould give my art credibility.”

Not many days later Ali and hisbrother were sitting in the livingroom and the phone rang. “Mybrother picked up the phone andit was Mr. Brooks’ secretary.”

Ali was invited to join the rest ofthe Brooks graduating class cer-emony where he would be pre-sented with an Honorary Bach-elors degree in photography.“When we heard the news we allcried,” said Ali.

Ali has been interviewed by nu-merous publications and had hisphotos published in Peterson’sPhotographic Magazine, PopularPhotography, and Santa BarbaraDestination Guide. Ali’s websiteis www.scenicshots.com and hewill soon be featuring these ac-complishments. Keep an eye outover the next few months andwatch how Ali’s future grows.

“I hope I am an inspiration tosomeone – someone who has agoal they want to reach but isn’tsure they can. It doesn’t matter ifthey are disabled or not.”

Ali Shahrouzi, 38, is an artist – a photographer by

profession. For twenty-five years, with a little help

and a lot of fortitude, Ali trained himself to be the

best landscape photographer he could be.PHOTOGRAPH: PJ HELLER

8 | TRI-LINE Summer 2003 Summer 2003 TRI-LINE | 5

Success at TCRC Molly . . . 23 years and 7 miles to find home

Molly (her name has been changed to protect her

identity) is 23 years old, born with velocardiofacial

syndrome (VCFS), a genetic disorder that occurs in

approximately 1 of 5,000 live births. VCFS usually

6 | TRI-LINE Summer 2003 Summer 2003 TRI-LINE | 7

Stephen Day • Tri-Counties Regional Center • 805.560.3757 ext. 11

Kathy Mottarella • Office of Clients’ Rights Advocacy • Protection & Advocacy, Inc.520 E. Montecito St. • Santa Barbara, CA 93103 • 805.884.7218

Jacqueline Phan • Assistant Clients’ Rights Advocate • 805.884.7297

Advocacy . . . Consumer Advocate

Advocacy . . . The whole world is watching

On the morning of April 7, 2003,the message boomed loud andclear from the voices of thousands- “No More!” The hall of theC o n v e n t i o n C e n t e r i n Sac-ramento, California, was filled be-yond the 1,200 people it originallyintended to hold. Even so, peoplefrom across the state were stream-ing in still, lining the walls twoand three people deep. The lobbyoutside the hall doors was occu-pied with a thousand more, andhundreds were left to wait on thesidewalk - unable to enter at all.

They came from as far north asEureka, California, and from athousand miles the other way.More than eighty people from thetri-counties were there to witnessand be a part of history in themaking. They were children, cli-ents, family members, direct carestaff, providers, and advocates.Between the support of the Lead-ership Project, a program of AlphaResource Center in Santa Barbara,the Tri-Counties Regional Center,and vendors across the tri-coun-ties, their participation was pos-sible. “I can’t believe it!” criedJohn, personal assistant to Nick, ayoung man from Santa Barbara.“I can’t believe it!” he repeatedover and over again.

Journalists, newscasters from TVand radio, and documentary film-makers memorialized this historicevent. “My eyes were filled withtears most of the day. I witnessedhistory in the making,” said LauraBialis, documentary filmmaker. “I

felt honored to be there.” Whenthe rally ended an hour or morelater, a crowd estimated by severalpolice officers at “over 3,000”formed a march behind the ban-ner, THE WHOLE WORLD ISWATCHING, stepping to the beatof the drums that led the way.

They moved down K Street to-ward 11th - some walking, otherspushing a wheelchair or holdingsomeone else’s hand, passing po-lice controlling traffic, with the TVnews helicopter hovering over-head.

“There were so many people, itwas like there was no end,” com-mented a mom from VenturaCounty. As the march approachedthe State Capitol, some legislatorsstood on the balconies outsidetheir offices looking on at a sightthey had never seen before.

The marchers split up to en-ter the North,East, and Southentrances to at-tendlegislative hear-ings to testify, asthey will be doingagain and again.

Warren Mattingly, a client fromSan Luis Obispo - “Today, I wantto talk about my friend, Phil. Phil usesa wheelchair, needs help getting out ofbed, and getting dressed. He can’t eatwithout assistance or take care of hisdaily needs. He is learning how to usea communication device so he canspeak and others can understand.Please don’t take Phil’s life from him.”

Annie Topete, a mother fromSanta Barbara - “This is a photo ofmy lovely eleven-year-old daughter,Isa. She uses a wheelchair and com-municates with photographs. Cuts toservices for people with disabilities canleave her without proper medical care,a wheelchair that works, and a specialtoilet and bath seat. Eliminating thesethings from her life would change herfrom being an active part of our fam-ily and the community we live in, to alife of isolation.”

Steve is always busy and wouldn’t have it any otherway. He is either on the phone with a regional centerclient or a family member who is in need of the guid-ance and motivation that many have learned to counton - or on the road to a People First meeting or a dayprogram to provide information and support. Steve’sjob comes to him so naturally. What he can offer oth-ers in their personal efforts to make positive changein their lives comes from personal experience and theknowledge that having control over one’s life andfuture is worth a fight.

Parents need him, too, as they learn to “let go” of theirchild whose disabilities cause them to be vulnerablein a world that is not always accepting. “Everyonemust have a chance to grow and develop and becomethe person they were meant to be,” reflects Steve ashe thinks of his own life growing up.

“I try and sup-port people byfirst finding outwhat inspiredthem,” saidSteve. “Everyonehas something intheir life, or abouttheir life. An exampleis a young man I havebeen working withwhose gift is photogra-phy. Even though hehas a speech impediment that prevents him from fullycommunicating his thoughts, pictures are so power-ful and you don’ have to say one word. The gift of hisphotography can change his life and the lives of a lotof other people.”

“Advocacy is

my life!”

insists Steve.

Advocacy . . . Clients’ Rights Advocate

The regional center is required to have at least oneperson to fulfill the duties of clients’ rights advocate,to protect the legal, civil and service rights of clientsserved by the regional center. According to KathyMottarella, Clients’ Rights Advocate (CRA), “We dothat by helping folks with a variety of problems in-cluding access to special education, In-Home Support-ive Services, vocational services, regional center ser-vices and Medi-Cal, as well as refer abuse and neglectclaims to the proper authorities.”

Because the volume of need for advocacy is high, di-rect representation is not always possible. For ex-ample, if a parent calls and needs more respite carefor their child and has been unsuccessful in obtain-

ing this service from the regional center, Kathy orJacqueline will send a Respite Care Fair HearingPacket so families can prepare for a fair hearing, ifneed be.

The CRA has numerous informational packets use-ful to parents whose children are in special educa-tion, or to clients who believes their civil rights arebeing violated. The CRA may directly represent cli-ents and families who have been denied eligibilityfor regional center services. They may also attend IEPmeetings, special education and Medi-Cal hearings.

The CRA also trains clients in self-advocacy and doesoutreach to Latino families to help them understandservices and rights issues.