A Publication of Tri-Counties Regional Center | Winter 2008
Cover Story 01 One Mom’s Positive Message
One Mom’s Positive Message
Featured Articles 03 04 05 08 09 09 10
A Community Works Together New Developments in Pharmacotherapy for Autism (Dis)ability through Education and Action “If You Want Happiness for a Lifetime, Help Somebody” Advocating for my Child and Others Think you are Getting Sick? How to Tell A Perfect Match
Continued on page 3
Vision: Persons with
Miah enjoys a book with her sister Morgan
Miah and her mother Kerri
developmental disabilities live fully and safely as active and independent members of their community.
As a parent of a child served by Tri Counties Regional Center (TCRC) and a staff member of a service provider for TCRC, Kerri Emmons has a unique and powerful perspective. In a recent interview, she explained her quest to demonstrate to other parents that learning of a child’s developmental disability can be an opportunity for an enriched family life.
Mission: TCRC provides
In her role as an early intervention specialist with Abbott and Burkhart Therapy, Kerri educates families about what to expect for the achievement of developmental milestones in early childhood. She teaches strategies for learning through play. To emphasize her positive and inspirational experiences as a parent, she often brings four year old Miah along with her. Parents have the opportunity to learn from Kerri through her instruction and observe her interactions with her own child. “Demonstrating for
person and family centered planning, services and supports for individuals with developmental disabilities to maximize opportunities and choices for living, working, learning and recreating in the community.
continued on pg 3
Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D.
The end of the calendar year is a good time to celebrate results as well as review goals that require further work. The seven Focus Areas of the Tri-Counties Regional Center (TCRC) 20072009 Strategic and Performance Plan form the cornerstone for the achievement of the mission and vision of the organization. The plan, aligned with the Performance and Compliance contract with the Department of Developmental Services (DDS), guides staff and leadership to achieve strategic goals, ensure basic assurances such as health and safety and enhance quality of life for persons served by TCRC. The Focus Areas of the plan offer specific objectives that consider all of these efforts. For example, as we address Family Services, progress is being made around informing new families about regional center services and planning for treatment of autism. Dr. Steven Graff, Clinical Director, along with Autism Coordinator, Colleen Duncan is spearheading this work. Addressing the Health needs of the persons we serve has been high on our list of priorities. Concerned about the resources available for medical and dental services, we have increased our efforts around development of dental resources and have partnered with CenCal to provide information about available medical services. CenCal provides a semi-annual update to the provider list for Santa Barbara and San Luis Obispo Counties. Go to the TCRC web site for more information (http://www.tri-counties.org/ programs-services/servicegeneric/). TCRC’s Training and Development Plan addresses in-service education and orientation for new employees as well as more
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in-depth training for new service coordinators. Leadership training and development has become a core topic as well. Other efforts in this area have included TCRC hosting the first Southern California Gathering in partnership with East Los Angeles Regional Center in early October to promote learning around person centered thinking (PCT). The growth of the PCT initiative continues within the agency as well as through collaboration with other regional centers and service providers. TCRC staff introduced PCT to the regional center Chief Counselors Group this fall in an effort to influence state wide adoption of the principles. We are beginning to see a measurable impact of the PCT efforts. In response to the TCRC 2007 Services and Supports Survey, persons served reported feeling more in control of the IPP and the plan for their life than ever before. Certain analysis suggests that this shift in outlook is linked to the PCT initiative. Much progress has been made in the development of efforts to support TCRC’s affordable Housing Focus Area. I am pleased to announce that Mr. Marc Belfortti accepted the position of Executive Director of the Tri-Counties Community Housing Corporation (TCCHC), a non-profit housing organization recently established by Tri-Countes Association for the Developmentally Disabled (TCADD). View the press release and the TCRC Five Year Housing plan at http:// www.tricountieshousing.org. This fiscal year, TCCHC will purchase two homes in Ventura County to be held in perpetuity for persons with developmental disabilities served by TCRC. These purchases will mark the beginning of the effort to secure 500 units of housing throughout the tri-counties area by 2013, benefiting approximately 1500 people. Supported Employment service providers are working in collaboration with regional center staff to address the barriers to employment for persons served by TCRC, especially in the current economic environment. In an ongoing effort to enhance Life Activities, progress has been made toward defining alternative models
for individualized day services, programs that increase choice and opportunities in the community. Need for effective Autism services continues to grow. One recent enhancement is the provision of in-home services to provide parents and families with education and training about effective behavior intervention strategies. This has given many families the additional tools necessary to keep their child at home. The Autism Taskforce will remain active in 2009 guided by recommendations from the Blue Ribbon Commission regarding best practices to support individuals with autism.
2009 is the 40th anniversary of TCADD. A special “Anniversary Issue” of the TriLine will celebrate staff, community partners and stakeholders who have helped TCRC maximize opportunities for individuals with developmental disabilities.
In response to the proposed midyear cuts in the California state budget, actions around Advocacy are being taken. The TCADD Board of Directors passed a “Resolution of Solidarity”. This document is intended to serve as a call for action to advocates and advocacy groups to protect the rights of persons with developmental disabilities and to continue the promise of the Lanterman Act in spite of the current tough fiscal challenges facing the State. The resolution states that the proposed reductions “will jeopardize the safety, well being, civil rights, and freedom of people with developmental disabilities” and should be opposed. Additionally, The Leadership Project, a group of local selfadvocates and family advocates has also been re-established to organize advocacy efforts. View additional information on the budget at http:// www.tri-counties.org/news-events/ Continued from the cover page hot-topics.htm. As we reflect on the accomplishments of the past year, we look forward to meeting the challenges that lie ahead. In 2009 we will be celebrating the 40th anniversary of the formation of TCADD. We will be acknowledging the history of TCADD and TCRC – with a glance back in time as there is much to celebrate about the progress made to help people we serve to live fully and safely as active and independent members of their community. Wishing you a safe New Year,
Recurring Topics 02 06 09 01 01
From the Executive Director Calendar of Events Health & Safety TCRC Staff News Greetings from the President
A Community Works Together
by Dan Van Keuren, Service Provider II, Oxnard Residing on her own in South Oxnard, Pat Briden enjoys her independence. Her mobile home offers privacy and a great place to create arts and crafts. Pat is known for her wonderful crocheted blankets and scarves and regularly receives ribbons from the Ventura County Fair. The SAGE Supported Living Agency and Lynn Anderson RN from Arc Ventura County, help her out at home when she is not attending the Oceanview Day Program in Port Hueneme. Pat with weekly volunteer, Jack Levy When Pat transitioned to a four point walker last spring, the five steps leading up to her home went from a challenge to a hazard. It became evident that a ramp was necessary. According to contractors, the steps and front porch would have to be demolished. The cost of the project was estimated to be between $10,000 - $15,000!
struction materials through a grant from the Changing Life Foundation. She also coordinated a volunteer work force from Calvary Christian Church in Westlake Village. On July 5th, 20 volunteers demolished the steps and porch and built a twenty-four foot ramp. The volunteers also made some minor repairs to Pat’s mobile home. Some of Pat’s neighbors came over and requested assistance with their home - - and some neighbors’s homes were repaired that day. A few volunteers even mentioned coming back in the future to paint Pat’s home, all free of charge. Thanks to collaboration and some outstanding volunteers, Pat now can enjoy safe access to and from her home.
With primary income from Social Security, Pat could not afford the ramp that would enable her to continue her independent lifestyle. After appealing to a variety of community organizations including the Area Agency on Aging, the Action Foundation and Habitat for Humanity, I got a lead on another agency. I called Frances Prince of Rebuilding Together and was relieved to hear “of course, I think we can be of help”. The three of us met at Pat’s home and it was determined that Pat qualified for assistance through Rebuilding Together. Mrs. Prince contacted a licensed contractor. She secured funds for the con-
Pat using her ramp
Special appreciation to Lynn Anderson, RN consultant for ARC of Ventura County, Cindy Armstrong, Director of Oceanview, all the staff of the SAGE SLS Program, and Pat’s Service Coordinator, Dan Van Keuren. Their persistence and collaboration led to action which enhanced the quality of Pat’s life.
One Mom’s Positive Message continued from pg 1 by Heather Wennergren, Media Coordinator
parents the positive realities of nurturing a child with a developmental disability is an important part of my work”. Kerri emphasizes the possibilities, rather than the potential disadvantages of living with a child with a developmental disability. Recalling the first moments she learned of Miah’s disability, Kerri reflects upon thoughts clouded by fears about the experiences that her daughter might have, or might not be able to have. Having now enjoyed four years with Miah, Kerri asks herself “what the heck was I thinking? I have hopes for Miah to do many things. She may live on her own some day, have the power to make her own choices, make her own mistakes - - and learn from them.” Kerri describes the impact that Miah has had on her family, “Miah has changed all of our lives. We all see the world very differently now. We enjoy our time together each day and have hope for our future.” The opportunity to observe Kerri and Miah provides a ‘reality check’ for many parents in terms of positive approaches to intervention. Miah has been part of Early Start services through TCRC and now participates in Special Day Preschool, a language based program offered through the public school system. Miah lives with her mom Kerri, dad Jacob, and two sisters, Mckenna age 8 and Morgan age 11. Kudos to Kerri on her enduring effort to raise awareness of the abilities of every child as she provides inspiration and guidance to families. WINTER 2008 tri-line | 3
NEW DEVELOPMENTS IN PHARMACOTHERAPY FOR AUTISM by Dr. James O’Hanlon, Psychopharmacologist Research for developing safer and more effective treatments for developmental disorders is a constant, ongoing process. Current treatments were mainly developed to minimize disruptive symptoms but in the future a better understanding of innate deficits should lead to treatments that increase individual abilities. Emerging trends in research for achieving this goal are apparent in the list of ongoing clinical trials provided by National Institutes of Health (NIH) at their website, www.ClinicalTrials. gov. The list, stratified by sponsor, disorder and intervention, includes all federally funded clinical trials and most supported privately in the USA with a smattering of those in progress elsewhere. Trials concerned
with autism have quadrupled over the last five years until now, 132 are in progress or completed but not yet reported. Most (74%) deal with testing the efficacy of particular treatments: • Pharmacological (42%) • Behavioral (10%) • Dietary restrictions or supplements (8%) • Acupuncture/acupressure (5%) • Hyperbaric oxygen (4%) • Other (5%) Pharmacological trials may be further divided between the majority dealing with well-established drugs like Risperdal and Prozac and a minority concerning novel agents that have shown promise in preliminary studies. Some among the latter may emerge as pharmacotherapy of the future and are discussed here for that reason.
SOME INNOVATIVE STRATEGIES N-ACETYLCYSTEINE Posey and McDougle are also conducting a study with N-acetylcysteine (NAC), which increases glutathione, the body’s primary defense against toxic free radicals (‘oxidative stress’). The causes, effects and extent of oxidative stress in the autistic population are a matter of hot debate but there is reasonable evidence that it causes immune abnormalities, associated with deficient glutathione, in a sizable proportion.
MINOCYCLINE There is evidence that an innate neuroimmune reaction causes chronic inflammation in the autistic brain. Investigators at National Institute of Mental Health (NIMH) are currently testing the effects of minocycline, an antibiotic with strong anti-inflammatory properties, in children with autism with the hope of achieving global behavioral improvement.
D-CYCLOSERINE D-cycloserine was developed for treating tuberculosis. Then it was discovered that the drug attenuates excitatory neurotransmission in the brain. Preliminary studies have shown its benefit in schizophrenia and also autism where it reduced social withdrawal. Two trials with d-cycloserine, led by world-class experts in autism, Drs. David Posey and Chris McDougle, are underway at Indiana University.
INTRANASAL OXYTOCIN Intranasal oxytocin is being administered to children with autism in a trial at Mount Sinai School of Medicine. Oxytocin is a naturally occurring brain hormone that promotes social bonding in all mammalian species and a pilot study suggested that it might have the same effect in autism.
ARICEPT, RAZADYNE AND EXELON Drugs that increase the acetylcholine neurotransmission in the brain by inhibiting the enzyme that inactivates the transmitter – Aricept, Razadyne and Exelon – are 1st-line therapy for Alzheimer’s disease. Small scale studies with each of the drugs have provided an indication that they improve receptive and expressive language in children with either autism or Down syndrome. The manufacturer of Aricept has now launched an extensive trial series with the apparent purpose of registering the drug for the indication of cognitive dysfunction in children with Down syndrome. Controlled trials with Aricept and Razadyne for autism are also being conducted at NIMH and the University of Medicine, New Jersey, respectively.
PERSON CENTERED THINKING TRAINING “Introduction to Person Centered Thinking” is a 10-hour training that teaches a set of ideas, skills and strategies to assist individuals who use services to achieve greater control and influence over their lives leading to positive community participation and value. There are several upcoming opportunities to attend this training. Trainings are hosted by different agencies and all trainers use a standard curriculum that has been approved by the Learning Community for Person Centered Practices. *Training dates, times and locations are subject to change. 4 | tri-line WINTER 2008
Training Dates* (Must attend all dates in series) 2/4, 2/11, 2/18
Time
Location
For more information and to register contact:
1:00pm-4:00pm
TCRC, San Luis Obispo Office
2/12, 2/19, 2/26
9:30am-1:00pm
Karen Moore 805-782-8890 ext 16 karenmoore@pathpoint.org Lauren Connelly 805-489-9472 ext 201
2/17, 2/24, 3/3
4/9, 4/16, 4/23
3/6, 3/13, 3/20
Santa Maria, Grogan Park Assembly 9:30am-12:30pm Santa Maria (location to be announced) 9:30am-1:00pm Santa Maria, Grogan Park Assembly 9:30am-1:00pm Ventura County (location to be announced)
Karen Moore 805-782-8890 ext 16 karenmoore@pathpoint.org Lauren Connelly 805-489-9472 ext 201 Vi Nguyen 805-884-7206 vnguyen@tri-counties.org
(Dis)ability Through Education and Action
by Jennifer L. Dwyer, Peer Advocate, San Luis Obispo Being a participant in Partners in Policymaking®, is a little like looking at my favorite painting. At first, as people from all over central California file into the large conference room of the Bakersfield Inn and Suites, the larger picture remains out of focus; if looked at too closely, it appears to be a mass of unconnected, slightly dizzying dots. However, over time, the people that began the journey as virtual strangers, have, through the experience they shared, gained a little perspective. United in a common purpose, like any family, we gathered for a weekend that, while challenging, felt an awful like a Sunday in the Park.
time in 13 years, on October 18, the 40-member class of 2008 graduated from the program. Parents, personal assistants, and selfadvocates received diplomas and lapel pins as a symbols of their collective achievement. “Through education, we have become more aware of how to properly demonstrate respect toward people with disabilities,” Denise Martinez, a self-advocate from San Luis Obispo, said.
Monthly, participants—affectionately dubbed “PIP peeps” by me—converged upon the Doubletree. Coming from as far away as Madera and San Mateo, participants did everything from learning about the ap“Partners in Policymaking has given me propriate use of assistive technology devices, the practical tools to use to speak up for to staging a mock legislative hearing at the those who cannot speak for themselves,” Jennifer Dwyer receives Graduation Certificate state Capitol. With over 100 hours of learning Esther Bautista, mother of 5-year-old behind the newly graduating class, the energy in the room was Bethany, a person served by Tri-Counties Regional Center, Santa Maria, said. “It’s high time that someone speaks out for the injus- one that, thanks to the knowledge gained, removed the ‘dis’ in “disability”, and shifted the focus to abilities, instead. tice they have suffered and work to promote a more accessible world.” “This graduation represents another class of advocates ready to act on issues important to the disabilities community,” Jim LockPartners in Policymaking (PIP) is an internationally recognized wood, coordinator of PIPCA, said. “Next year, Partners in Policytraining program designed to empower people with disabilities, making California will be training our third class of advocates in their families, and other members of their immediate support the southern California region,” he said. “This will mean that, in network. Through a series of eight weekend-long seminars, participants learn about the contemporary lives of the one in five three years, PIPCA will have trained more than 100 advocates from across the state of California.” Americans that, like their loved one, find themselves disabled in some way. They also learn about the historically discriminating Participants’ expenses-about $8,000 each-included lodging and treatment that spurred the earliest disability rights’ activists into action. Like those who came before them, it is believed that Part- attendant care costs, if needed. The California State Council on Developmental Disabilities funds the entire cost of the program ners in Policymaking graduates, once armed with the educational through a grant to the aforementioned members of the Califortools, will actively work to change the perception of a “life with a nia Collaborative. The Collaborative organizations commit staff disability.” time and resources to the oversight and implementation of the Partners in Policymaking program. The program, funded by a 2006 State Council on Developmental Disability grant, is intended to teach those with disabilities—and the people who love, live, and work with them—how to advocate for individual, social, and legislative change. “Half of our participants are ‘self-advocates’, or those who have disabilities themselves,” Linda Landry, of the Family Resource Centers Network of California (FRCNCA) said. “The other half is made up of those who love and [emotionally and physically] support them.” Originally modeled after a curriculum generated by the Governor’s Council of Minnesota 21 years ago, Partners California has not had an easy road. Thanks to the dedication of many organizations — including People First of California, the American Association of Intellectual and Developmental Disability, and the Family Resource Centers Network of California— for the second
Partners in Policymaking Graduating Class
WINTER 2008 tri-line | 5
calendar of events SAN LUIS OBISPO County Parents helping parents - family resource CENTER email: php@ucp-slo.org
SANTA BARBARA County ALPHA RESOURCE CENTER - Family Resource Center email: info@alphasb.org / www.alphasb.org
SAVE TH
E
Feb 18th DATE Call Alp Early Start ha for d etails
San Luis Obispo Office Atascadero Office 800.456.4153 x3277 805.461.7415 805.543.3277
Santa Maria Office 805.347.2775
PHP SCHOLARSHIP PROGRAM August 2008 – May 2009 For families of children with a developmental disability who currently receive services from San Luis Obispo’s Tri-Counties Regional Center. Attending a specialized conference or training can help further parenting skills, knowledge and confidence when raising a child with special needs. With prior approval, up to $300 of the conference registration fee may be reimbursed. For an application, Contact: Parents Helping Parents, 543-3277
Alpha Resource Center offers a wide variety of services and supports to encompass the needs of individuals with disabilities of all ages and at all stages of life. Children & Family Services ~ Family First assists parents of children with special needs to gain the knowledge and skills to enable their children to be all they can be. Parentto-parent and family support, parent-professional collaboration, resource meetings and workshops, information & referral, transition, future planning, and much more! Resource Libraries ~ offer over 2000 titles on developmental and other disabilities. Located at Tri-Counties Regional Center offices in Santa Maria and Santa Barbara. Mobile library services are available. Call for hours or specialized assistance. Katie’s FUNd™ ~ provides social and recreational opportunities for teens with developmental disabilities. Contact: Amy Buesker at 683-2145 x127 or abuesker@alphasb.org. Alpha Adult Services ~ provides a broad spectrum of services for adults with developmental disabilities. Each participant assists in the development of individualized services tailored to achieve his or her personal goals. 805.964.3547
Parents Helping Parents’ Educational Playtime Resource Library for your children with special needs. To inspire your child’s senses, stop by and check out a toy! PHP Family Resource Center Library: New arrival: On the Spectrum, a Film by Jeff Grinta, is a documentary about people successfully coping with Asperger Syndrome and Autism. Parents, doctors, therapists, psychologists and children talk about Asperger’s and their challenges and victories. Meet Jonathan, voted out of class by his classmates, and beaten up daily, he is now a successful professional bass player. Meet Matt, a 29 year old who struggled with Asperger’s through high school and is now a highly sought after peer support counselor for children with Asperger’s and Autism. Parents of Children 0-10 years Down Syndrome Support Group Coming soon! Contact PHP for details. 805.543.3277 or email php@ucp-slo.org. HOUSING OPTIONS FOR YOUNG ADULTS WITH DISABILITIES Would you be interested in learning about future housing options for your young adult children with special needs? Please contact the Parents Helping Parents Library to place your name on an interest list for this upcoming event, time and date to be announced. Contact: PHP 805.543.3277 or email php@ucp-slo.org. UCP KIDS CLUB, 6 – 12 YEAR OLDS OR TEEN CLUB FOR 13 – 17 YEAR OLDS Community recreation for kids or teens with special needs, including transportation, supervision and fun activities. Contact: Tessa 543-7102, youthservices@ ucp-slo.org UCP SLO LIFE WITHOUT LIMITS WEEK EVENTS April 29, 2009: Adult Employment Open House April 30, 2009: Abilities Fair May 2, 2009: Paul Wolf Access Advocacy Awards Contact: Karl Winkler 541-8751 or kwinkler@Ride-On.org. ONGOING: NORTH COUNTY AUTISM SPECTRUM SUPPORT GROUP 3rd Friday of every other month, 7 - 9:00 pm, Paso Robles. Contact: Becky: 471-1354 or ncautismsupportgroup@charter.net or contact@ autismspectrumcenter.com. SOUTH COUNTY AUTISM SUPPORT GROUP 2nd Tuesday of every month, 12 – 1:30 pm, Grover Beach Contacts: Leslie 904-9212 or sweeters@digitalputty.com. INDEPENDENT LIVING RESOURCE CENTER’S PEER SUPPORT MEETING FOR INDIVIDUALS WITH DISABILITIES 1st Monday of every month, 1:30-2:30, SLO, Contact: Denise Martinez 593-0667. POSTPARTUM DEPRESSION SUPPORT GROUP 2nd Saturday of the month, 9 - 10:30 am, Cost: $20, Contact: Joan Fusco, LCSW, phone: 801-3127. THIRD SUNDAYS AT THE PASO ROBLES CHILDREN’S MUSEUM 3rd Sunday of the month, 10 am – 12 pm, For families of children with special needs, Paso Robles, Cost: $7 for Adults; $6 for children 1 – 13 years; $5 for Seniors aged 65 and over Contact: 238-7432.
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Santa Barbara Office 877.414.6227 805.683.2145
Parent-to-Parent Support Sponsored by Special Needs Network. Meets third Thursday of every month, 9:00 am at Coffee Diem, 505 S. McClelland Street in Santa Maria. Contact: Diana 805.937.8756. City of Santa Barbara Parks & Recreation Department Check out what they have to offer. Contact: Adapted Programs 805.564.5421. Family First at alpha resource connections A family resource center and parent network. Provides parent-to-parent and family support, parent-professional collaboration, parent and family workshops, and information and referral. Contact: North County 805.347.2775 / South County 805.683.2145. Something for the Siblings The Special Needs Network is a new club for the siblings of individuals with disabilities. The club will consist of several fun activities and will be a chance to get away and relax with others who also have siblings with disabilities. Contact: Laura King, 805.344.1403. Santa Maria Special Education & Support Information Kathy Rowley has started a Yahoo Group for parents of children with special needs who live in Santa Maria. To join go to http://groups.yahoo.com/group/ santamariasupport. Autism Society of America - Santa Barbara Chapter (ASASB) Contact: Marcia or Sandy at 805.560.3762 or info@asasb.org, www.asasb.org. Santa Maria Autism Support Group Has an online support group for parents of children diagnosed with autism. There is also a weekly playgroup that meets at a local park. Contact: 805.714.1187 or email begeasykr@yahoo.com. Lompoc Autism Support Group A support group for parents and other caregivers of children diagnosed with autism. Contact: Polly Bleavins 805.347.2775 or email pollyb@alphasb.org. P.O.S.E. Parents of Special Education This parent support group meets the third Wednesday of every month at 9:30 a.m. The group also fundraises to provide additional educational materials for special education programs in Santa Barbara. For meeting locations and fund raising events, contact Jennifer Griffin, 805.967.0371 (jenagrif@verizon.net) or Cathy Abarca, 805.448.6431 (cat736@aol.com). TALK ABOUT CURING AUTISM (TACA) Meets 3rd Saturday of the Month, 11:00 am - 1:00 pm “The Loft” Above Sur La Table in Paseo Nuevo. This is a support group meeting for caretakers for those with special needs. Contact Kathleen_reish@tacanow.org, www.tacanow.org. SBATA@YAHOOGROUPS.COM Online group for parents of special needs children, email hosseini58@cox.net.
Ventura County Rainbow Connection - Family Resource Center email: rainbow@tri-counties.org Oxnard Office 800.332.3679 805.485.9643
Simi Valley Office 800.517.2524 x2325 805.823.2325
Rainbow Connection provides many activities for children and families. Here is a list of on-going support groups: SIBCLUB First Friday of the month, 6:30 - 8:00 pm Games, Fun, Activities, for 5 - 14 years old siblings of children with developmental disabilities in Oxnard. CEREBRAL PALSY SUPPORT GROUP (ENGLISH & SPANISH) Third Monday of the month, 9:30 - 11:00 am Groups meet separately in English and Spanish Join other parents to talk about issues related to raising children with cerebral palsy and share resources and information. SPECIAL PARENTS NETWORK (ENGLISH) Third Wednesday of the month, 6:30 - 8:30 pm, Oxnard Third Thursday of the month, 9:30 - 11:00 am, Simi Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs. DOWN SYNDROME SUPPORT GROUP (ENGLISH) Second Thursday of the month, 6:30 - 8:30 pm, Oxnard Families have open discussions about raising children with Down syndrome. DOWN SYNDROME SUPPORT GROUP (SPANISH) Second Thursday of the month, 6:30 - 8:30 pm, Oxnard Families have open discussions about raising children with Down syndrome. AUTISMO SUPPORT GROUP (SPANISH) Second Thursday of the month,10:30 - 12:00 pm, Oxnard First Thursday of the month, 7:00 - 8:30 pm, Oxnard Families have discussions on issues related to raising children with autism. RAINBOW MOMS CONNECTING - OXNARD (SPANISH) Third Friday of the month, Oxnard Come and enjoy time with other mothers of children with special needs and have a relaxing time. For more information or to RSVP please call Rainbow. CONNECTING WITH RAINBOW - FILLMORE (SPANISH) Third Friday of the month, 5:00 - 7:00 pm, Dr. Neil Schmidt Family Resource Center. Families of children and adults who receive services from TCRC are assisted in navigating the healthcare system as well a variety of other issues. They can also make an apt. in advance to make a Health Care Notebook. TEDDY BEAR BRIGADE Third Saturday of the month (except for summer) 1-3:00 pm, Thousand Oaks For children 3 -13 years old with special needs and their siblings. It includes stories, sensory themes, crafts and music. Visit www.bearsandcompany.com to register. Parents meet separately for social and networking time. SANTA CLARA SUPPORT GROUP (SPANISH) Third Monday of the month. Families meet to share the experiences they’ve had with their children with special needs and learn about resources. SANTA PAULA SUPPORT GROUP (ENGLISH) Families meet to share the experiences they’ve had with their children with special needs and learn about resources. Meets 4th Monday of the month. SANTA PAULA SUPPORT GROUP (SPANISH) Families meet to share the experiences they’ve had with their children with special needs and learn about resources. Meet 1st Monday of the month. RAINBOW MOMS CONNECTING - FILLMORE (ENGLISH) Third Monday of the month. Moms of children with special needs meet to share and learn new information.
RAINBOW MOMS CONNECTING - VENTURA COUNTY (ENGLISH) Meeting dates and times vary. Come and enjoy a night out with other mothers of children with special needs. NICU SUPPORT GROUP (ENGLISH & SPANISH) Third Wednesday of the month, 6:30 - 8:00pm, Oxnard Groups meet separately in English & Spanish. Meet other families and share ideas of coping, photos, info, joy and triumphs. Pizza will be served! Families with babies in the NICU and NICU grads welcome. G-TUBE/J-TUBE/NG-TUBE NETWORKING (ENGLISH & SPANISH) Third Thursday of the month, 6:30 - 8:00 Oxnard Does your child have a G-tube, J-tube, or NG-tube? Has it been suggested that your child get a tube? We look forward to sharing our stories of frustrations, fears, and successes (large and small). SOCIAL TIME FOR ADULTS SERVED BY TCRC Last Saturday of the month (RSVP a must), 12:30-2:30 pm, Oxnard Come and join other adults for refreshments, conversation, browsing in the library, and enjoy a movie and popcorn at Rainbow Connection in Oxnard. Direct care or supervision is not provided. OTHER COMMUNITY SUPPORT GROUPS: MEETUP GROUP FOR FAMILIES WITH KIDS WITH ASPERGER’S NEW GROUP, ages 5 - 12 years. RSVP at the link to the MeetUp site: http:// parents.meetup.com/636/ BRANDON’S BUDDIES (ENGLISH) First Saturday of the month, Calabasas. A free play date for children of all abilities. To RSVP call Dina Kaplan 818.222.8118 or brandonsbuddies@pacbell. net. AUTISM SPECTRUM DISORDER (ASD) PARENT SUPPORT GROUP (ENGLISH) Second Wednesday of the month at Rainbow Connection, 7:00 - 9:00 pm, Oxnard. For more information contact Tera Marquez or Karen Bobo at asdparentsupportgroup@gmail.com. SUPPORT GROUP FOR PARENTS OF KIDS WITH AUTISM Last Monday of the month, 6:30 pm We provide child care. The address is 2697 Lavery Ct., Suite 17 Newbury Park. Contact Leila Silva at 805.480.9039 or 805.341.3089. SPECIAL PARENTS CAFE Third Saturday of each month. Spanish speakers welcome, Silvia, 805.530.0315. LET’S GO HIKING First Saturday of the month, Bob Charney and his son Michael, who has Autism, invite other dads and their sons with developmental challenges to go hiking. If you’re interested in participating, call Bob Charney at 818.735.7331 or 818.789.1586 x223. MOM’S NIGHT OUT THOUSAND OAKS (ENGLISH) Third Tuesday of the month. For contact information call Rainbow. DAD’S NIGHT OUT THOUSAND OAKS (ENGLISH) Fourth Tuesday of the month. For contact information call Rainbow. VENTURA COUNTY AUTISM SOCIETY (ENGLISH) For more information call Ventura County Autism Society at 805.496.1632. HAPPY FRIENDS CLUB Alternate Tuesdays, 6:30 pm - 8:00 pm, Camarillo Support group for adults & teens with mental/physical challenges. Speakers, games, arts & crafts, round table discussions, occasional community outings. Contact: Jean McGuire 805.816.2319 or email: bobbyjean2@mac.com.
With each issue of the Tri-Line, we provide information on some of the resources available to families within the Tri-Counties area. Please call to confirm dates and times of events. Check with your service coordinator for information on other resources available to you in your area. WINTER 2008 tri-line | 7
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TH
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Mary met Evelynn at a support group for parents of special needs children that Evelynn, a licensed therapist, was facilitating and is grateful that Evelynn founded “her Angels group” as it is “clearly one that is needed in the community.” Angels Bearing Gifts serves beneficiaries from Carpinteria to Paso Robles. In her wallet, Mary keeps a Chinese proverb which concludes with the line “If you want happiness for a lifetime, help somebody.” (Volunteers seem to instinctively know this.)
“If You Want Happiness for a Lifetime, Help Somebody” by Jill Davis, Angels Bearing Gifts
Volunteers—what would we do without them? Not nearly as much as we can do with them. One passionate volunteer is worth more than a dozen clock-watchers someone once said. This may have been the same person who said if you want something done give it to a busy person. Mary Watts and Holly Sherwin, two working moms in Santa Barbara, for whom a 24-hour day surely can’t be enough, are living examples of this viewpoint. Interestingly enough, working mothers with school-age children volunteer more hours than any other demographic in America according to U.S News & World Report. “I have done it all my life. It was instilled in me by my parents and in my husband from his parents,” says Mary. “So it is sort of second nature to us.” “It is so easy to get caught up in our everyday routines and forget about or just put off doing something for others,” says Holly. Both women chose Angels Bearing Gifts to introduce their children to volunMary with her son Ben teering and to the lessons that volunteering conveys. Mary’s son, Ben, and Holly’s son, Alec, have special needs (as does Angels founder Evelynn Smith’s daughter, Michelle) so it is a match that works well on several levels. “It was an eye-opening experience for Alec,” says Holly. “A bit scary at first, but I think he got it. We were able to have a great discussion about the importance of helping our fellow human beings.” And she adds: “Volunteering as a family made the experience so much richer.” 8 | tri-line WINTER 2008
Holly and Lanny with their son Alec
“I don’t always live up to it the best that I can,” says Mary, “but it is something I usually strive for.” Volunteering as a family and, at this time of year, as a family holiday tradition, is what feels right to so many in our community. It’s giving back. It’s making a difference. It’s an “active lesson” in compassion for children. “As Alec gets older, I hope the extent of our volunteering grows and through it, we also will continue to grow as a family and a community,” says Holly. Both the Sherwin and Watts families are hands-on volunteers for Angels Bearing Gifts, wrapping and delivering holiday gifts to individuals with developmental disabilities who don’t have families. They also sponsor beneficiaries through financial contributions, ensuring that they are remembered on their birthdays, Valentine’s Day as well as Chanukah and Christmas. Volunteers, we need you. We can’t do much without you, and we appreciate everything you do. And if you want to know more about Angels Bearing Gifts and the ways you can help developmentally disabled people without families celebrate the holidays, please call 884.7222 or email info@ angelsbearinggifts.com. It’s not too late to volunteer!
Advocating for My Child and Others
by Linda Miyahira, M.S, Service Coordinator, Simi Valley team
The word “advocacy” is thrown around more than ever these days. As parents of children with special needs, we are advised to become an advocate by every doctor and therapist we meet. So, what exactly does it mean?
affiliates, provide regular trainings for parents and caregivers (which include the development of effective advocating with your regional center and school district), as well as a basic understanding of your child’s rights on both state and federal levels.
Advocacy, according to the dictionary, is the act of pleading or giving verbal support for a cause. To be an advocate means you must become that voice. This is easy enough if you have been trained to speak or have a natural gift for speaking up. For many parents, this is not the case, and it is a scary role that we are suddenly expected to step into immediately for our children.
It is necessary for parents to know when they are ready to advocate. Sometimes a parent must jump in and learn along the way when there is urgency. However, as a service coordinator and a parent, I have seen a number of parents with good intentions create huge rifts with the very people their children need in their lives. They burn bridges where there needs to be a smooth path for children to receive every necessary service to reach their potential.
Generally, you are not alone in this process if your child is born with a condition that requires the assistance of doctors, therapists, and service coordinators. However, if your child has a condition that is not immediately obvious to anyone but family and friends, a parent’s world can feel like a dark chasm swirling with a myriad of possible diagnoses (thanks to the Internet) and professionals without names. For those of us involved with the regional center system and our local school districts, some of that confusion has been eliminated, but that does not end our advocacy. It is a lifelong role for many parents. So, where can a parent learn more?
We all go through the grieving process (denial, anger, bargaining, depression, acceptance), and it is important to know where you are in that process before going about the business of advocating for your child or someone else’s child. It is also important to make sure that what is being advocated for is in the best interest of the child and not to satisfy a parent’s personal need (or subconscious vendetta). It requires much self-reflection and introspection, which is a brave act in itself. By doing this exercise, we can see more clearly and take a more objective approach.
Rainbow Connection Family Resource Center is a wonderful support network that is run by parents of children in the Regional Center system. They have a lending library and a number of support group
Advocacy is about building bridges and forming links that will give parents and their children appropriate support and access to every service that will help them both on their journey to a fulfilling life.
health & safety Think you are Getting Sick? How to Tell. . .
If you have developed a few symptoms, but are unsure if you have a cold or allergies, the matrix below may help. It lists the symptoms of cold, flu, sinusitis and allergic rhinitis.
By Louis Cassano, RN Nurse Specialist symptoms
COLD
FLU
FEVER
Rare in adults and older children, may be high in infants and small children
Not usual, fever may Usually high (102-104) and can last for 3-4 days, indicated infection fever and chills
Not usual, fever may indicate infection
HEAD ACHE
Rare
Sudden Onset, may be severe
Yes, may have facial or eye pain
Possible
MUSCLE ACHES
Possibly mild
Not usual
Not usual
TIREDNESS / WEAKNESS
Mild
Yes, may last two or more weeks
Mild
Not usual
EXHAUSTION
Never
Sudden onset, may be severe
Never
Never
NASAL DISCHARGE
Watery to thick, cloudy or white
Sometime watery to cloudy or white
Thick yellow-green sinus Thin, watery, itchy eye congestion
SNEEZING
Often
Sometimes
Sometimes
Sometimes
SORE THROAT
Often
Sometimes
Not usual
Often
COUGH / CONGESTION
Mild hacking, a lot of clear, yellow or green phlegm may indicate infection. If wheezing, notify your doctor. If cough lasts 14 days or more, see your doctor.
Usual, may be severe. A lot of clear, yellow or green phlegm may indicate infection. If wheezing, notify your doctor.
Especially at night
Possible
Yes, often severe
Spotlight on the Web
SINUSITIS
ALLERGIC RHINITIS
WINTER 2008 tri-line | 9
A Perfect Match
by Athena Meisheid, Associate Director, Community Options, Inc. (COI) Some people with developmental disabilities have never had the opportunity to benefit from the many rewards family home life brings. Others desire to participate in family home life again. For the past thirteen years, Community Options, Incorporated (COI -An Adult Family Home Agency - AFHA ) has offered unique opportunities for adults with developmental disabilities to live in a home in their community with a family carefully matched to meet their needs and preferences. The culture that they are accustomed to is carefully considered.
Estela doesn’t need medication to sleep any more. Best yet - - Estela is often laughing and smiling! She is invited and participates in all the Dela Vega’s large extended family events and is an integral part of the family holidays and traditions. When Kahlia was born, Estela was there at the hospital with all of the family. There are weddings, showers, birthdays with piñatas, and Estela is there for it all! Family Home Provider, Jessica says, “I don’t know how you figured out the match, but Estela really fits with our family, she really feels like a part of my family.”
Estela near her bed
Estela and her home life situation is just one example of many wonderful matches that have occurred through COI. For the past four years, Estela has lived with the Dela Vega Family in Santa Maria, which includes Family Home Providers Jessica, Carlito, their daughter Vanessa, and two year old granddaughter Kahlia. The Dela Vega family became certified to provide care, supervision, and support through COI, completing a rigorous process that includes information gathering about their family, on-going training, background clearances, and maintenance of their home according to COI standards. Estela previously lived in a care home that did not meet her cultural preference. Although good quality care was delivered, Estela appeared frustrated. She would sometimes cry and hit her head with her hand to express her unhappiness. Specialized care and cultural considerations were difficult to accommodate at this home due to regulatory restrictions that impede the ability to customize care and support. For example, growing up in her family home, Estela was accustomed to sleeping on the floor and often crawled out of her bed to do so. It was common for Estela and her family to sleep on the floor together. At her previous care home, Estela slept in a high hospital bed and was in danger of injury on nights when she attempted to lay on the floor. Due to these “nocturnal behaviors”, Estela was treated with medication to deter her from leaving the bed at night.
Estela with Jessica Dela Vega
In addition to the Dela Vega family, Estela also receives the support of Community Living Coordinator, Kim Burt, who helps to coordinate medical and other supports, oversees quality assurance for the home, and helps to provide whatever Estela needs to be successful at home and in the community. Respite supports are also provided by COI to the Dela Vega family. This provides a break for the Dela Vega family and provides Estela with opportunities to do fun activities at home or in the community with an additional member to her circle of support. COI contracts with consultants that provide practical and technical expertise in helping her become as independent as possible.
Ingrid Rushing, COI President/ CEO states, “When it comes to the process of creating a home for ourselves and building our The previous care provider suggested that the quality of Estela’s life circle of people we want to share may improve if she lived with a family who spoke her native tongue our home and personal life with, and could more readily accommodate her cultural and physical living that process is a very thoughtful, preferences. unique, and intimate one. What Estela with Kahlia may be defined as the “comforts Through a regional center referral to COI, Estela was able to move into of home” for one person will certainly be different for the next. This a Spanish speaking home, where foods she was accustomed to were is why at COI we believe that facilitating, developing, and matching lovingly prepared and familiar music was heard. Accommodations supports with one person at a time is what quality service is all about. and adaptations to the environment were made to meet Estela’s needs Thoughtful considerations, watching, listening, and collaboration are a and preferences. The Dela Vega family welcomed Estela with her own part of the success!” specially made bed, one that fit her petite frame, was cozy, and had modified legs to lower the bed. The Dela Vega family home also had For more information about becoming a state certified Adult Family soft carpeting and padding on the floor to accommodate Estela when Home Provider or to inquire about COI’s services, please contact she preferred to sleep there. Athena Meisheid at (805) 481-7329- ext. 201. 10 | tri-line WINTER 2008
Please note that the Fall 2008 TriLine included a misprint in the Awards section. The correct information for all Spirit of Excellence Award winners is printed below. In our continued commitment to recognize employees for outstanding work, some exciting changes have been made to the Spirit of Excellence award program. The award acknowledges employees who demonstrate teamwork, good citizenship, service to the people we serve, morale building, quest for quality and above and beyond dedication to their work. The new program will be instituted the fourth quarter of 2008. Employees are nominated quarterly by their colleagues. Two quarterly winners are selected from each of the larger Oxnard and Santa Barbara offices and one from each of the remaining offices. A nomination committee comprised primarily of TCRC employees selects the quarterly winners. All nominees receive a $20 gift certificate. Quarterly winners receive an award certificate, temporary possession of the lovely, stone Dolphin Award and a chance to become one of the two annual winners. At the end of the year, the accomplishments of all quarterly winners are reviewed by the Director’s team and two employees are selected to receive the Annual Spirit of Excellence award. Annual winners receive a $300 gift card, public acknowledgement, and a Dolphin Award engraved with their names. SPIRIT OF EXCELLENCE AWARDS
3rd Quarter
2007
SPIRIT OF EXCELLENCE AWARDS
4th Quarter
2007
SPIRIT OF EXCELLENCE AWARDS
1st Quarter
2008
SPIRIT OF EXCELLENCE AWARDS
2nd Quarter
welcome new employees
2008
Jessica Osuna Service Coordinator II
Phil Stucky Controller, Santa Barbara Anabelle Cordero Service Coordinator II, Oxnard Danielle Gonzalez Secretary III, Simi Valley Lars Eacott Service Coordinator II, Simi Valley
darcy bishop Service Coordinator II, Atascadero bruce powers Psychologist, San Luis Obispo karen wissig Service Coordinator II, Santa Barbara matt lorden Human Resources Associate, SB
dan van keuren Service Coordinator II, Oxnard violeta pulido Secretary III, Oxnard gary riewer Service Coordinator II, Simi Valley
David mulvey Service Coordinator II, Atascadero Andrea Schacht Service Coordinator II, San Luis Obispo Genevieve soto-berry Service Coordinator II, Santa Barbara Vi Nguyen Organizational Development Associate, SB Alisa Welsch Service Coordinator II, Atascadero Shilo Freer Service Coordinator I, San Luis Obispo Sally Mendoza Service Coordinator I, Santa Barbara Cathy Berry Executive Assistant, Santa Barbara
Rebecca Luden, Service Coordinator II Regina Kentner, Psychologist I
TCCHC ANNOUNCES NEW EXECUTIVE DIRECTOR
TCCHC
DENISE rENNA Service Coordinator II, Atascadero Summer Beasley-Hoffman Service Coordinator II, San Luis Obispo Cynthia Camacho Service Coordinator II, Santa Maria Rosemary Rice Service Coordinator I, Santa Barbara
promotions
awards
TCRC staff news
Tri-Counties Community Housing Corporation (TCCHC) Board of Directors is pleased to announce that Marc Belfortti has accepted the position of Executive Director. Mr. Belfortti brings to this new position over twenty years of experience in banking and financial services, project feasibility and affordable housing. Prior to joining TCCHC, he served as
Megan Bovenzi Service Coordinator II, Oxnard Zeke Vargas Service Coordinator II, Oxnard Uvence Garcia Service Coordinator II, Simi Valley Dalia Ruiz Service Coordinator II, Santa Maria Anne Baltzer from SC II to Early Start Manager Megan Bovenzi from SC II to SC II with Masters Alison Forsyth from SC II to SC II with Masters SUMMER BEASLEY from SC II to with SC II with Masters COLLEEN DUNCAN from Resource Developer to Autism Coordinator
First Vice President and CRA Officer for IndyMac Bank, Pasadena. TCCHC’s mission is to enhance the quality of lives for people with developmental disabilities served by Tri-Counties Regional Center by creating quality, affordable housing options in inclusive communities. For more information, visit www. tri-countieshousing.org.
San Luis Obispo County Atascadero Hotel Park Business Center 6005 Capistrano, Suite E Atascadero, CA 93422-7219 805.461.7402 FAX 805.461.9479 San Luis Obispo 3450 Broad Street, Suite 111 San Luis Obispo, CA 93401-7102 805.543.2833 800.456.4153 FAX 805.543.8725 Santa Barbara County Santa Barbara 520 East Montecito Street Santa Barbara, CA 93103-3278 805.962.7881 800.322.6994 FAX 805.884.7229 Santa Maria 1234 Fairway Dr. Santa Maria, CA 93455 805.922.4640 800.266.9071 FAX 805.922.4350
Ventura County Oxnard 2401 Gonzales Road, Suite 100 Oxnard, CA 93030-2119 805.485.3177 800.664.3177 FAX 805.988.9521 Simi Valley 1900 E. Los Angeles Ave. Simi Valley, CA 93065 805.522.8030 800.517.2524 FAX 805.522.8142 WINTER 2008 tri-line | 11
Tri-Counties Association for the Developmentally Disabled 520 E. Montecito Street Santa Barabara, CA 93101
NONPROFIT ORG. U.S. Postage PAID Santa Barbara CA 93101 Permit No. 359
Greetings from the President By Stan Deakin, TCADD Board Director potential impact on our staff and management. I am proud of our leadership and how they are handling the continuing fiscal crisis. Funds have been well managed, resulting in little or no impact on persons served as well as staff. We know that there is much work ahead The Tri-Counties Association and expect a state budget for the Developmentally for the remainder of this fiscal Disabled Inc. (TCADD) Board year and next that will most of Directors is comprised of likely be further affected by volunteers, including business economic conditions. We will people, professionals, family members and persons served. not pause in our continued advocacy efforts to ensure the Many board members wear best outcomes for our regional multiple “hats” – for example one may be both a professional center’s fiscal health. and have a family member Monitoring the progress who is served by Tri-Counties Regional Center (TCRC). Board for the TCRC Strategic and Performance Plan is a critical members bring a dedicated duty of the TCADD Board. and informed approach We support the efforts of our to their work, especially Executive Director, Dr. Omar in their activities in board Noorzad and the TCRC staff committees. This year has as they work hard to meet the been particularly challenging objectives in the plan. A copy for the Administration and Executive Committees around of the plan can be accessed on the TCRC web site at monitoring the impact of the www.tri-counties.org/aboutdelay in the passage of the tcrc/strategic-performance/. State budget in California, I want to in particular note which affects delivery of the great strides that have services and supports by been made in the area of TCRC. Of equal import, we housing this year. TCADD have been vigilant around the
board members and staff have played important and integral roles in the development of the Tri-Counties Community Housing Corporation (www. tri-countieshousing.org), a non-profit housing corporation set up by our regional center to focus solely on affordable housing for persons with developmental disabilities.
Tri-Counties Regional Center Headquarters
TCRC’s 40th anniversary is upon us! It is a time to reflect upon the history of TCRC, to appreciate and learn from the early beginnings of the regional center’s work and to acknowledge the progress made in the delivery of services and supports. We are so pleased to be part of the work of our regional center and we are sure that despite daily challenges faced by staff and the roller coaster ride of state budget crises, we will all work together to maximize opportunities and choices for living, working, learning and recreating in the community for those with developmental disabilities.
Stan Deakin
Have a wonderful holiday season!
Call for Volunteers for the TCADD Board Potential members have business management, public relations, education or other business or non-profit experience. Family members of persons served by TCRC are encouraged to apply. Make a rewarding contribution to TCADD and help improve the quality of life for persons with developmental disabilities. Please contact Nancy Kavin at nkavin@mwdh2o.com for more information, or visit our web site: http://www.Tri-Counties.org/tcrc4/about-tcrc/tcadd/membership/
520 E. Montecito Street Santa Barabara, CA 93101 805.962.7661 Tel 800.322.6994 Toll-Free www.tri-counties.org
Board of Directors President
Sandra Aldana Secretary
Robyn Adkins Justine Blevins Bob Cobbs Charles Devlin Cathy Farrar Nancy Kavin Julie Kahn Donna Moore Shanti Nadiminti Kathleen Redmond Kathy Reed
Board Meetings in Santa Barbara
Jan 30th ..................... 6:00 pm March 14th.................. 9:30 am May 2nd ..................... 9:00 am
Town Hall Meetings Scheduled for 2009 Jan 21st ...... San Luis Obispo April 15th........ Santa Barbara May 20th................ Simi Valley
Cover Design: Heather Wennergren | Editor & Design: Heather Wennergren Translation: Carlos Cerecedo | Photography: Wendy Guerrero
July 15th............. Santa Maria