TriLine Newsletter - Fall 2003 - English

Tri-Counties Association for the Developmentally Disabled

NONPROFIT ORG. U.S. Postage

PAID

520 E. Montecito Street, Santa Barbara, CA 93103

Santa Barbara CA 93101 Permit No. 359

A PUBLICATION OF TRI-COUNTIES REGIONAL CENTER

Santa Barbara

From the Board . . .

•

Ventura

•

San Luis Obispo

www.tri-counties.org

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

by Jim Kester, President

The State Of California is in its worst financial deficit in history – now at $35 billion a n d

expected to rise. Nonprofit organizations funded by the state, like TCRC, are facing a very serious time. Awareness is one of the most important things I can request of you because it will make you a better advocate for yourself, your family, or the people you serve.

The TCRC board o f directors consists of clients, family members, and pro-

fessionals who volunteer their time and they need your support – particularly now.

There are major cuts to supports and services being considered by our legislators that will impact each of our lives and the health and safety of clients.

Tragedy can occur if we let it. It’s up to us to protect the rights of people with developmental disabilities and continue to set the example for the rest of the nation.

Jim Kester President

FRONT (l to r): Warren Mattingly, Peter Stoner SECOND ROW (l to r): Jim Carbone, Margaret Cortese, Ph.D., Kim Olson, Ingrid Innecken, Gerri Knilans, Jim Kester BACK ROW (l to r): Melanie Topp, Kathy Redmond, Bob Costello, Hamid Hosseini, Jesse Ornelas NOT PICTURED: Carmen Ramirez, Harriet Levine

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TRI-COUNTIES REGIONAL CENTER

Main Office 520 E. Montecito Street Santa Barbara, CA 93103 Tel 800.322.6994 Fax 805.884.7229 Oxnard 2220 E. Gonzales Rd., Suite 210 Oxnard, CA 93036 Tel 800.664.3177 Fax 805.988.7157 Simi Valley 1919 Williams St., Suite 201 Simi Valley, CA 93065 Tel 800.517.2524 Fax 805.522.8142 San Luis Obispo 3450 Broad St., Suite 111 San Luis Obispo, CA 93401-7102 Tel 800.456.4153 Fax 805.543.8725 Atascadero Hotel Park Business Center 6005 Capistrano, CA 93422-7219 Atascadero, CA 93422-7219 Tel 800.771.6898 Fax 805.461.9479 Santa Maria 1234 Fairway Drive, Suite A Santa Maria, CA 93455 Tel 800.266.9071 Fax 805.922.4350

SUMMER 2003

PHOTOGRAPH: MARIE GREGORIO-OVIEDO

I have completed two exciting years as President of the Board of Directors for Tri-Counties Regional Center. As someone who has been around the developmental services system for decades, I found that there is always something new to learn.

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

MicroEnterprise . . .

Let your heart beam in “Trieana Moon’s voice fills a crowded room while she bangs out ‘Hound Dog’ on a piano,” says correspondent Alicia Doyle in the April 9, 2003 issue of the Ventura County Star newspaper.

The 28-year- old Oak View artist performs music at openings and benefits in Ventura, Santa Paula, and more. She can be found every Monday morning at the Little Tree House in Ojai, a Senior Activity Center, singing anything from Billie Holiday to the Beatles and Mariah Carey. “Wherever she performs, faces

light up and it doesn’t make any difference what she plays,” according to Trieana’s mother, Carolyn.

She sings day and night. Ask her to turn up the volume and she’ll belt it out like an amateur-hour gospel shouter. Hand her a mike and she’ll work the room like a Vegas lounge singer. “How you all doin’ today?” she booms in a voice that sounds especially huge for someone less than 5 feet tall. “You’re lookin’ mighty fine! Are you feelin’ fine?”

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

Summer 2003 TRI-LINE | 1

From the Executive Director MicroEnterprise Development Achieving Self-Suf ficiency

ATASCADERO SAVE THE DATE . . . On October 18th, Parents Helping Parents and TCRC will be sponsoring a “Fiesta Familiar” for our Spanish-speaking consumers and families in Paso Robles. This is the first such event in SLO County and we are hoping that all of our Spanish-speaking families will be able to attend.

by Omar Noorzad

The economic crisis in California is a call for communities across the state to become more innovative in the way people with developmental disabilities receive supports and services. At Tri-Counties Regional Center, new and cutting edge ideas that bring freedom and responsibility to people with developmental disabilities will be closely explored. MicroEnterprise development is one of those ideas.

It is a key component to the concept of self-determination and a tool for people to achieve a goal of financial self-sufficiency through business ownership.

It is the belief at TCRC that every person with a developmental disability has the same right to be selfdetermined as all people. For years, people with developmental disabilities have stated loud and clear that they want to have experiences that enable them to take more personal control and make choices. Capturing this opportunity will push society and policy further away from the traditional thinking that people with developmental disabilities can only be served by special programs to

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knowing they can be and are entrepreneurs.

While MicroEnterprise development is rare in California, it is cutting edge and in the years ahead we will hear and learn more about its success. Therefore, this issue of the Tri-Line will be an important exercise for all of us, as we open our minds, think of our futures, and study how MicroEnterprise development might tap into the self-employment potential for yourself or someone you care about.

Currently, people with disabilities are the most underemployed segment of society, with an unemployment rate of nearly 70 percent.

Unfortunately, there are major barriers for people who wish to become more self-sufficient. Most public assistance programs have rules that restrict what a person with a developmental disability can have in assets, and federal policies discourage a departure from the rolls of the Social Security system, because people will be penalized.

Of fice Updates . . .

However, we are entering a new time, and policy is gradually shifting and becoming more sensitive to providing the needed resources for people with developmental disabilities to lead increasingly selfdetermined lives.

At TCRC, we embrace opportunities to bring people the freedom, authority, support and responsibility over their lives they have longed to achieve. People will discover individual gifts and strengths they were previously unaware of, become successful entrepreneurs, and contribute to their communities in more ways than ever before.

I look forward to learning of your thoughts on MicroEnterprise development and other features in the Tri-Line that promote the concept of self-determination.

SANTA MARIA ICCAT, Inclusive Childcare Committee Action Team, a sub-group of the Santa Barbara Children’s Commission, has recently received Prop 10 funding to develop a program that is aimed at integrating kids with disabilities into regular childcare programs. For further information, please contact Jill Baker at the Santa Barbara County Child Care Planning Council, (805) 964-4710 ext. 4473, sbcccpc@sbceo.org SAN LUIS OBISPO The SLO office serves approximately 1000 consumers, with a staff of 16 service coordinators, resource development, quality assurance, support, psychology and medical staff. This office serves persons living from northern Santa Barbara County line up to Ragged Point south of Monterey County line.

Foster Grandparents

SANTA BARBARA During Fiesta in Santa Barbara, staff from the SB TCRC Consumer Services Department volunteered their time and energy at the South Coast Special Olympics Taco Booth. The Taco Booth was a fund raising event for South Coast Special Olympics. Service Coordinator Eli Soto and Manager Dan Van Keuren spearheaded the event. Both Children’s and Adult Team staff participated.

SIMI VALLEY Due to a rise in the number of children with developmental disabilities in the East Ventura County area, four service coordinators have been added to the staff, whose assignments are Early Start and children’s services.

OXNARD On May 30, the Group Service Coordination project from the Oxnard team organized an immigration workshop for monolingual and Spanish speaking families. El Concilio, a local organization that provides services to monolingual and Spanish-speaking families, such as counseling and advice on immigration issues, made a presentation in the Oxnard office conference room to about 15 families.

Important Dates TCRC BOARD MEETINGS

TOWN MEETINGS

September 13 ...... San Luis Obispo County October 11 ........... Santa Barbara County November 1 ......... Ventura County December 6 .......... Santa Barbara County

August 26 .............. Paso Robles September 3 ......... Santa Maria September 17 ...... Santa Barbara October 1 .............. Oxnard/Simi

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

On May 30, 2003, the TriCounties Regional Center Foster Grandparent and Senior Companions Program held their yearly recognition luncheon. Ninety-five volunteers were honored for their service to children and adults with developmental disabilities. Guest speakers this year were Omar Noorzad, Executive Director of Tri-Counties Regional Center; Stephen Day, TCRC consumer advocate; Carolyn Whalen, ARC Wagon Wheel; and Pam Jirkovsky, teacher at Conejo-Triggs Elementary School.

Parent Profile . . .

MicroEnterprise

Jim Ross

. . . continued from page 1

Jim Ross is Megan’s dad. He is also a respected member Trieana doesn’t read music, but when she hears a song she likes, a few minutes later she is playing it on the piano. “If she hears it, she can play it,” said Carolyn.

“Music is everywhere in her body.”

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 needs of children with developmental disabilities that both professionals and families alike deeply appreciate and respect.

It has been only a year since Jim and his wife, Jan, moved their daughter, 28 years old, into a home of her own in a Goleta tract neighborhood. “When Megan comes to visit her mother and me, she is clear about where home is.

It makes me feel great when she says, ‘I want to go home’,” said Jim.

Jim’s greatest concern at this point in Megan’s life is not the recently discovered independence she deserves as an adult, but what havoc the state’s fiscal crisis could create in her life. “It may force her to come back home, because supported living services may not be possible for her any longer, and that would be such a huge step back for her.”

“We must continue to fight the good fight,” claims Jim. “Funding is necessary for people like Megan

to live like other citizens. We must get more involved in making affordable housing available and work with the Housing Authority and experts that exist in our midst, like CHANCE (the Coalition for Housing Accessibility, Needs, Choices & Equality, Inc.).

“We need to get creative and make it a priority.”

Trieana also creates and arranges her own music. “I just sit at the piano and think and create,” she says. “I just go with the flow.”

For 4-1/2 years, Trieana attended Hope University in Orange County, a school for adults with developmental disabilities who are gifted in music and art, and now she has released her first CD, entitled simply “Trieana.”

As she thinks about her future in music, Trieana indicates that one day she expects to perform at the Hollywood Bowl, and again at Libby Park in Ojai.

When asked how she might get invited to per for m at the Hollywood Bowl, she said, “I don’t know, I’m gonna talk to somebody about that.”

Trieana has advice for others searching for their own gift and talent. “I just want to tell

everyone out there – all the potential musicians in the world – go for it, and let your heart beam in. Ever ybody has a special gift. Everybody can sing.”

Trieana’s CD can be purchased from www.PlanetCD.com or from the Arc Ojai Enrichment Center, 210 Canada Street, Ojai, CA 93023, phone 805-646-5186.

The cost is $10.00.

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 apartment or house to call “home.” She has watched friends leave Hillside House year after year.

Over the decades, Judy applied for housing in several different developments in Santa Barbara, Goleta and in Carpinteria. But nothing ever materialized. When she discovered that United Cerebral Palsy (UCP) was developing a 17-unit complex in Goleta, she 10 | TRI-LINE Summer 2003

placed her name on a waiting list with dozens of others.

Finally, in the early part of 2003, the multi-million dollar project, funded by a variety of layered federal, state, county, city and private funds and grants, (including funding from Tri-Counties Regional Center) was nearly complete.

With her long-time friend and advocate, Margaret Dodd, by her

side, Judy anxiously attended an interview conducted by the panel of agency representatives responsible for deciding who would receive housing and who would not.

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At the end of the interview, Judy felt confident she would not be chosen and she would die at Hillside House. She was wrong.

Congratulations on your new home, Judy!

Summer 2003 TRI-LINE | 3

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On the Road to Enterprise . . .

Department Spotlight

An entrepreneur in the making

Department of Finance and Administration Lorna Owens, Chief Financial Officer

When Danny was born more than twenty years ago,

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

Julie Barnes wondered what she should expect from her son in school as a student, and eventually as an adult

working and living in the community. “We decided he would be around normal kids doing normal things and we should expect the most,” said Julie.

When Danny first entered public school, the Individuals with Disabilities Education Act, the 1975 landmark legislation that affords all children the right to a public education, had just been passed.

With her determination to give Danny every opportunity to be included, the first brick was laid for the inclusion of children with disabilities in public school in San Luis Obispo. “I went to the principal and said I wanted to enroll Danny in kindergarten. I thought she would roll out of her chair.”

It wasn’t long before a kindergarten teacher approached Julie and said she would like Danny to be in her class, and things started to fall into place. Over the years, Danny has not always been included, because the support he needed was at times impossible to find. “We struggled over the years to get him included as much as possible.”

Once Danny graduated from school, Julie and Danny’s father helped him design an individual-

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ized day program.

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

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

Danny’s first business venture started as a volunteer folding laundry for neighbors. His skill and dependability was becoming more valued, and it didn’t take long before he was getting paid for the service.

Last year, Julie attended a self-determination conference in Las Vegas and participated in training on MicroEnterprise development. In the training, “We discovered that Danny likes people and if he doesn’t have a lot of pressure, but provides a service to people, he does really well.” The conference was the beginning of developing a business plan for Danny. “It is a way of letting people have control of their lives, dream and have dignity and respect.”

Now keeping her eyes and mind open to all that is possible for Danny as an entrepreneur, Julie was in the Santa Maria airport one day, not many months ago. She looked around, eventually turned to Danny and said, “What would you think if you had a little coffee cart in here and sold some bagels and muffins? Your customers

The department is also responsible for compliance regulations, proper and best practice record keeping, securing adequate insurance, conducting vendor audits, fiscal and legal analysis for program service contracts, and supporting the agency in achieving its Strategic Plan goals. would be the airport staff and the travelers.”

Danny said, “Yes, but I will need help.”

Since, Danny has allowed himself to dream and be excited. But he is also nervous. “The responsibility is frightening to him,” said Julie. “I don’t think anyone has asked him to be this responsible.”

Danny’s business will take time to develop, but the time is well spent because, according to Julie, “It’s the natural thing to do; it’s the right thing to do.”

“We are always trying to work on improving processes to make things easier for service coordination staff, consumers, families and vendors,” says Lorna. This includes the way the department provides financial information to the TCRC board of directors, implements the Expenditure Plan, gives department managers more responsibility in maintaining budgets, and the ongoing update of TCRC policies and procedures.

Lorna attributes RCRC’s sound fiscal position to the strong team of 19 staff and their experience.

“The staff ’s experience and helpful attitudes is noticed by CPA and DDS auditors. The staff understands what it takes to get the job done.”

FRONT ROW (l-r): Lorna Owens, Phil Stucky, Kathy Ziemkiewicz, Stacey Garcia, Richard Graham SECOND ROW (l-r): Randy Howells, Paula Signorelli, Leslie Burton, Tina Piazza, Cathy Black, Sergio Quiroga, Lynda Bell, Gloria Pe, Lori Razo

IN THE NEWS FIRST 5 VENTURA COUNTY FAMILY STRENGTHENING PROJECT TCRC and Rainbow Connection received a 3-year grant of $220,000 per year

First 5 is the result of the statewide Proposition 10 initiative sponsored by Rob Reiner to allocate tobacco tax income to support the needs of children ages 0-5 and their families to maximize early intervention opportunities for young children to increase school readiness.

This project will enhance the continuum of care, strengthen community connections and reduce the isolation of families identified with developmental disabilities.

Rainbow Connection Family Resource Center will expand its libraries and mobile outreach vehicles with books and videos on disability issues.

Rainbow’s Parent-to-Parent mentor service will be expanded through the recruitment and training of parents of children with disabilities who can share their experience and mentor new parents with developmentally disabled infants and toddlers.

TCRC has a successful pilot program known as the Leadership Project, which has trained TCRC consumers and family members in advocacy at both local and state levels. Expansion of this project is anticipated in Ventura County as more parents of Early Start children gain confidence and refine their self-advocacy skills on behalf of their children.

Respite services will be expanded to provide the specialized care infants and toddlers need so that their parents can participate in a variety of training and interpersonal support opportunities of their own choosing.

For more information contact Laurie Jordan at Rainbow 485-9643/ TC1TL@tri-counties.org or Colleen Duncan, Resource Developer.

Summer 2003 TRI-LINE | 9

Success at TCRC

Enterprise Success

Molly . . . 23 years and 7 miles to find home

Through the Lens of a Camera

Molly (her name has been changed to protect her

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

identity) is 23 years old, born with velocardiofacial

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

syndrome (VCFS), a genetic disorder that occurs in

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

approximately 1 of 5,000 live births. VCFS usually

best landscape photographer he could be.

includes cleft palate, congenital heart defects, short stature and sometimes, mental retardation.

Molly was born dying of congestive heart failure and over the course of 15 years she had several major operations, including her first open heart surgery at age one.

As a child, Molly was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and by the time she reached 12 years of age, she developed hallucinations and paranoid delusions requiring her first psychiatric hospital visit, where she stayed for six weeks. “She would see cartoon characters running around,” according to Dr. Jim O’Hanlon, psychopharmacologist on staff at Tri-Counties Regional Center.

Over the course of the next ten years, Molly was hospitalized for psychosis four more times and was forced to move from her highly staffed residential placements six different times. By the time she was 18 years old, she had attempted suicide, and by 19 she had developed hypertension and a seizure disorder.

8 | TRI-LINE Summer 2003

Two years ago, Dr. O’Hanlon was called in to review Molly’s case at a time when she had become very aggressive and physically destructive. After meeting Molly, and becoming familiar with her challenges, Dr. O’Hanlon formed a team with her internist, a new neurologist, and the psychiatrist.

Together, they worked with Molly for about a year.

During the course of his work with Molly, Dr. O ’Hanlon discovered that one of the genes she was missing was at the root of all her psychiatric disorders. An enzyme that metabolizes transmitters in her brain was not being made in normal amounts.

Dr. O’Hanlon selected an old drug that would slow down transmitter production. Within two weeks, the epilepsy stopped and her hallucinations went away. When Molly was asked if she felt a change in her feelings, her response was, “I can’t get mad anymore.”

Molly was able to move to a less restrictive home and made the acquaintance of a young man. The couple fell in love, and late one night Molly packed her bags and walked seven miles to move in with him. Molly has been in the

same living situation for seven months. She terminated nearly all services of Tri-Counties Regional Center and began to control her own SSI Disability benefits.

According to Dr. O ’Hanlon, Molly’s past is an example of the cost of bad medicine. The expense of numerous hospitalizations and her restrictive residential placements were enormous. Today, the public bears little cost at all.

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 spontaneous remission? “Possible, yes, but I don’t think so,” said Dr. O’Hanlon. “The only way we can really find out is to take her off the drugs, and if she became psychotic and the seizures returned we would know for sure. But no one, including Molly, is willing to do that.”

Note: Dr. O’Hanlon and the team he formed to help Molly published a case report in the International Clinical Psychopharmacology journal, March 2003. For copies of the article, contact Alyson Delbrook at Tri-Counties Regional Center at (805) 962-7881 or go to the journal website at www.intclinpsychopharm.com and request a copy.

Every Sunday, Ali displays his art at the Santa Barbara Cabrillo Blvd. art show, where dozens of other artists sell handmade jewelry, pottery, paintings, purses, clothing, and more. The art show is one of Santa Barbara’s hottest tourist attractions.

“I’m in love with the art of photography. The art show is something I can count on and it makes me feel like I’m somebody – like a human being,” said Ali. Ali does not have the use of either his arms or legs and his brother, Sean, makes it possible for Ali to continue to pursue his love for photography. “My brother helps me out and buys equipment and supplies for me. Otherwise, I wouldn’t be a photographer. It is a very expensive hobby.”

During nearly every photo shoot, Ali’s brother is by his side. “He puts the camera on the tripod on the right hand side of my chair. I look through the camera and ask him to move the camera until it is where I want it to be. My brother looks at the light reading for me, and I tell him what to set the camera at. I look through the camera while my brother is focusing, and I tell him to stop when the image

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

When Ali completed high school at least two decades ago, he wanted to go to Brooks Institute of Photography in Santa Barbara, but couldn’t afford it. Ali learned that the husband of a friend of his mother’s knew Ernie Brooks personally, the founder of the institute.

This contact is why Mr. Brooks agreed that Ali would be permitted to sit through classes, without cost, without credit and listen to the instructors and learn what he could. Ali didn’t have the proper camera equipment and wasn’t able to complete every assignment. But, “I drove the instructors crazy by asking a lot of questions,” he said.

Ali sat through classes for three years at the Brooks Institute of Photography from 1984 through 1987, completing the program, as any other student would have been expected to do. Toward the end of the program, Ali said to his mom,”“I wish I had just a piece of

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

Not many days later Ali and his brother were sitting in the living room and the phone rang. “My brother picked up the phone and it was Mr. Brooks’ secretary.”

Ali was invited to join the rest of the Brooks graduating class ceremony where he would be presented with an Honorary Bachelors degree in photography.

“When we heard the news we all cried,” said Ali. Ali has been interviewed by numerous publications and had his photos published in Peterson’s Photographic Magazine, Popular Photography, and Santa Barbara Destination Guide. Ali’s website is www.scenicshots.com and he will soon be featuring these accomplishments. Keep an eye out over the next few months and watch how Ali’s future grows.

“I hope I am an inspiration to someone – someone who has a goal they want to reach but isn’t sure they can. It doesn’t matter if they are disabled or not.”

Summer 2003 TRI-LINE | 5

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Advocacy . . .

Advocacy . . .

The whole world is watching

Consumer Advocate

On the morning of April 7, 2003, the message boomed loud and clear from the voices of thousands - “No More!” The hall of the C o n v e n t i o n C e n t e r i n Sacramento, California, was filled beyond the 1,200 people it originally intended to hold. Even so, people from across the state were streaming in still, lining the walls two and three people deep. The lobby outside the hall doors was occupied with a thousand more, and hundreds were left to wait on the sidewalk - unable to enter at all.

They came from as far north as Eureka, California, and from a thousand miles the other way.

More than eighty people from the tri-counties were there to witness and be a part of history in the making. They were children, clients, family members, direct care staff, providers, and advocates.

Between the support of the Leadership Project, a program of Alpha Resource Center in Santa Barbara, the Tri-Counties Regional Center, and vendors across the tri-counties, their participation was possible. “I can’t believe it!” cried John, personal assistant to Nick, a young man from Santa Barbara.

“I can’t believe it!” he repeated over and over again.

Journalists, newscasters from TV and radio, and documentary filmmakers memorialized this historic event. “My eyes were filled with tears most of the day. I witnessed history in the making,” said Laura Bialis, documentary filmmaker. “I 6 | TRI-LINE Summer 2003

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

felt honored to be there.” When the rally ended an hour or more later, a crowd estimated by several police officers at “over 3,000” formed a march behind the banner, THE WHOLE WORLD IS WATCHING, stepping to the beat of the drums that led the way.

They moved down K Street toward 11th - some walking, others pushing a wheelchair or holding someone else’s hand, passing police controlling traffic, with the TV news helicopter hovering overhead.

“There were so many people, it was like there was no end,” commented a mom from Ventura County. As the march approached the State Capitol, some legislators stood on the balconies outside their offices looking on at a sight they had never seen before.

The marchers split up to enter the North, East, and South entrances to attend legislative hearings to testify, as they will be doing again and again.

Warren Mattingly, a client from San Luis Obispo - “Today, I want to talk about my friend, Phil. Phil uses a wheelchair, needs help getting out of bed, and getting dressed. He can’t eat without assistance or take care of his daily needs. He is learning how to use a communication device so he can speak and others can understand.

Please don’t take Phil’s life from him.”

Annie Topete, a mother from Santa Barbara - “This is a photo of my lovely eleven-year-old daughter, Isa. She uses a wheelchair and communicates with photographs. Cuts to services for people with disabilities can leave her without proper medical care, a wheelchair that works, and a special toilet and bath seat. Eliminating these things from her life would change her from being an active part of our family and the community we live in, to a life of isolation.”

Steve is always busy and wouldn’t have it any other way. He is either on the phone with a regional center client or a family member who is in need of the guidance and motivation that many have learned to count on - or on the road to a People First meeting or a day program to provide information and support. Steve’s job comes to him so naturally. What he can offer others in their personal efforts to make positive change in their lives comes from personal experience and the knowledge that having control over one’s life and future is worth a fight.

Parents need him, too, as they learn to “let go” of their child whose disabilities cause them to be vulnerable in a world that is not always accepting. “Everyone must have a chance to grow and develop and become the person they were meant to be,” reflects Steve as he thinks of his own life growing up.

“I try and support people by first finding out what inspired them,” said Steve. “Everyone has something in their life, or about their life. An example is a young man I have been working with whose gift is photography. Even though he has a speech impediment that prevents him from fully communicating his thoughts, pictures are so powerful and you don’ have to say one word. The gift of his photography can change his life and the lives of a lot of other people.”

y is c a c o “Adv !” fe my li Steve. ts insis

Advocacy . . .

Clients’ Rights Advocate 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

The regional center is required to have at least one person to fulfill the duties of clients’ rights advocate, to protect the legal, civil and service rights of clients served by the regional center. According to Kathy Mottarella, Clients’ Rights Advocate (CRA), “We do that by helping folks with a variety of problems including access to special education, In-Home Supportive Services, vocational services, regional center services and Medi-Cal, as well as refer abuse and neglect claims to the proper authorities.”

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

ing this service from the regional center, Kathy or Jacqueline will send a Respite Care Fair Hearing Packet so families can prepare for a fair hearing, if need be.

The CRA has numerous informational packets useful to parents whose children are in special education, or to clients who believes their civil rights are being violated. The CRA may directly represent clients and families who have been denied eligibility for regional center services. They may also attend IEP meetings, special education and Medi-Cal hearings.

The CRA also trains clients in self-advocacy and does outreach to Latino families to help them understand Summer 2003 TRI-LINE | 7 services and rights issues.