A Publication of Tri-Counties Regional Center | Summer 2015
Special Olympics World Games Open in July
Recurring Topics 02 From the Executive Director 09 Calendar of Events 16 Greetings from the President
Visio n:
Persons with developmental disabilities live fully and safely as active and independent members of their community.
Mission: TCRC provides 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.
Photo Credit: Cory Hansen
Cover Story 01 Special Olympics World Games Open in July Featured Articles 03 Ana Tamayo and the Art of Graceful Transitions 04 In Loving Color: Artists with Disabilities in the Contemporary Art Scene 06 The Importance of Humor 14 Naltrexone for Self-injury: The Drug that will Not Go Away 15 My Life Inside (New Column)
Every two years, Special Olympics athletes come together to compete at the Special Olympics World Games. Over 7,000 athletes from around the world will gather in Los Angeles this summer to show the true meaning of courage, joy, and determination. Athletes will be competing in a variety of different sports at venues throughout Los Angeles. Games will feature competitions in aquatics, gymnastics, track and field, basketball, football (soccer) and many other summer sports. Around 500,000 spectators are expected to attend this year’s World Games. The games commence on July 25, 2015 and all competition is free to attend. TCRC communities have stepped up as “Host Towns” for the games in San Luis Obispo, Santa Maria, Santa Barbara, Ventura, Oxnard, Camarillo, Thousand Oaks and Simi Valley. About 30,000 World volunteers are needed to support the Host Towns and athletes in creating a memorable and unique experience. Regardless of skills or background, there are volunteer opportunities for individuals or groups. Learn more about volunteering for the Special Olympics World Games by visiting this web site: www.la2015.org/volunteer. Other ways to support the games include fundraising, corporate sponsorship, donating to a Host Town, being a “Fan in the Stands”, or a team captain. Join us this summer in supporting and celebrating our Special Olympics athletes!! Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D.
regional centers and the service providers in Fiscal Year 2015-2016 and a 5% annual increase until the funding structure for the regional centers is updated. TCRC is collaborating with ARCA (Association of Regional Center Agencies) to implement regional advocacy plans. As the Local Advocacy Coordinator (LAC) for our regional center, I am participating in budget hearings in Sacramento, organizing informative visits to our local legislators and encouraging all stakeholders to be part of this effort. The inspiring stories in this TriLine demonstrate the importance of services and supports for people living with developmental disabilities. What came to mind for me as I read through the articles is the courage, commitment and creativity of everyone in these stories. I’ve seen these same qualities in so many of the people we serve. It’s wonderful to have the Special Olympics World Games close to home this year in Los Angeles! You can make a difference for a Special Olympics athlete. Get involved! Please support an athlete, donate to a Host Town, become a “Fan in the Stands” or volunteer. Look for more information at www.la2015.org. As we celebrate the courage of those we serve, it’s important to pay attention to current underfunding for our regional center system and take action. The funding for regional centers was reduced by over $1 billion during the Great Recession, the majority of which has not yet been restored. Additionally, the regional center system is growing around 3.5% yearly and the funding provided is not adequate to meet the demands of developing services and supports that satisfy new federal home and community based requirements. All 21 regional centers are struggling to meet mandated Service Coordinator caseload ratios and regional center service providers are struggling to recruit and retain qualified direct care staff. As a result, the stakeholders in the system have come together to form the Lanterman Coalition to send a unified message to the Legislature and the Governor requesting a 10% increase in funding to 2 | TriLine | Summer 2015
Once again, we all need to work together to ensure that our system has adequate financial support. Please visit the “Budget Watch” section of the TCRC website for additional current information. We have heard from our families and young adults about the needs of transition-age youth. Young adults want a place to live, a community life, a plan for vocational training, and competitive or supported employment. Read about Ana Tamayo for a great example of a young adult contributing to her community through employment. TCRC is committed to supporting competitive and supported employment for individuals with development disabilities; we know that services to support people in postsecondary school, on the job, and in the community will be needed. I am so pleased that through the support of innovative art programs, artists with disabilities are making a place for themselves in the contemporary art world. A few local programs are featured including Alpha’s SlingShot Art Forum, UCP Work, Inc.’s
SunDial Gallery and PathPoint’s Community Access Programs. I commend these providers for recognizing and nurturing creative talent. A visit to their galleries is a treat for any art enthusiast. And, if you have not had a chance to learn about the publications or speaking engagements provided by Brent Anderson and his family, now would be a great time to find his book! (www.unintentionalhumor.com/shop.) Talk about courage, commitment and creativity – Brent’s work says it all. It’s a delightful read. TCRC and people receiving services are fortunate to benefit from the expertise and knowledge of Dr. Jim O’Hanlon, TCRC’s Psychopharmacologist. Dr. O’Hanlon’s article about treatment with Naltrexone confirms that with some therapies perseverance is an important part of the treatment process. I commend Peter Stone for writing a book about his experiences and life as a person with a developmental disability. Peter was born in a time, the 1950s, of deep misunderstanding of developmental disability. Further excerpts from Peter’s book will be featured in upcoming issues of this newsletter. This series will give us an opportunity to appreciate the hard-won resources we currently have and remind us of the importance of steadfast advocacy for quality lives for people with developmental disabilities. Courage, commitment and creativity - - we see these qualities reflected in the people we serve, as well as in many of the fierce advocates for system change. I want to thank the thousands of you who signed the petition at Change.org. There is still work to be done. Visit the ARCA website at www. arcanet.org for suggestions about advocacy, talking points and activities, and to stay informed about the results of these efforts. Thank you for your dedication in supporting our system and have a wonderful summer! Best regards,
Artist Jeff Working creates a Sculpture
Ana Tamayo and the Art of Graceful Transitions by Heather Wennergren, Media Coordinator Ana Tamayo gets up early every morning and goes to work, returning home by 3:00 p.m. She works at A.C.C.E.S.S, (Adult Community Center for Educational Support Services.) Offered through the Ventura County Office of Education, A.C.C.E.S.S. is an educational program located in Moorpark that provides functional skill training for young adults with moderate to severe disabilities. Ana assists with student care, lunch preparation and clean up. “I like my job a lot,” she smiles, “because I help with special needs kids. It feels good.” Ana started her job after turning 21. She still has hobbies, but now they have to wait for the weekend. Ana earns an hourly wage plus Social Security benefits. She lives with her parents and is pleased to contribute financially. “I pay my rent and sometimes I go shopping. It feels good to help my parents.” Ana attended A.C.C.E.S.S as a student after completing Moorpark High School. She took classes at the Regional Occupational Program (ROP) in Camarillo through the Ventura County Office of Education. She selected Fashion Retail Merchandising to study and spent some time volunteering through a retail internship in a store before her current work opportunity arose. She’s delighted to be working with teachers and students there. Ana has adapted naturally to her shifting role, from student to staff. The familiar setting and teachers provide a supportive structure. Ana’s transition was relatively smooth. This is due in part to good planning. Her circle of support includes her parents and sister Claudia Tamayo, a former TCRC Service Coordinator. Some early challenges for Ana included navigating public transportation, tracking her hours and completing her time card. Some people find a job coach helpful during transition, but Ana didn’t need one. TCRC has service provider organizations that support individuals in employment settings. Agencies such as UCP Work, Inc. and PathPoint have several ways to help people get jobs and keep their
jobs. TCRC Service Coordinator Tawny Lopez describes some of the support for employment. “People get help with job coaches, adjusting schedules, building in additional breaks or shortening the duration of the work day.” Lopez continues, “Employers can also be given some guidance on instruction. Styles of teaching new skills may vary or be multi-modal, according to the individual’s learning needs. For example, instruction may emphasize visual cues, verbal cues, or model the behavior or task.” A combination of teaching styles is selected to fit each person’s needs.
Enjoy two stories about successful transitions to adult life about Ana Tamayo and Brent Anderson. Catch up on local talent on page 4.
When asked about how young people might prepare for the working world, Jaime Rutiaga, PathPoint Program Manager, shared some suggestions. “Preparation is a continuous learning situation. Young adults are encouraged to volunteer their time in industries that they’re interested in. This will not only allow them to develop soft skills along with transferrable hard skills, but also develop a reference for future employment. Moreover, working in a crew-based setting, such as Integrated Work or Group Supported Employment, provides the individual the opportunity to grow, meet challenges, and succeed in a supportive environment. This is key to long-term success on the job.” Rutiaga reminds job seekers that their first job is not going to be their only job. “This job is the first step on a pathway to continuous employment. The skills learned in this setting will only benefit them for future employment.” He adds, “It’s also important to have an exit strategy in place before leaving a job. Planning to work 12 months or 24 months before moving on is a good strategy.” Rutiaga’s last piece of advice is to always secure a new job before resigning from the current position. Lucky for Ana, she won’t be needing this tip for some time. It’s clear that she has found the right position for her. She does a great job and is appreciated by her employer. “I love it here,” she smiles again. What advice would she give to a job seeker? “Make sure to be positive and patient.”
Ana at Work
Summer 2015 | TriLine | 3
Artists and Artwork at SlingShot Alpha Art Forum in Santa Barbara
In Loving Color: Artists with Disabilities in the Contemporary Art Scene by Heather Wennergren, Media Coordinator; Photos by Isaac Hernandez Artists with developmental disabilities have a place in the contemporary art world through the support of programs like Alpha Resource Center’s SlingShot, UCP Work Inc.’s Sundial Studios, and PathPoint’s Community Access Programs. They are creating their place in local art scenes, building their portfolios, selling their art and producing moving work that touches people’s lives. SlingShot Alpha Art Forum (alphasb. org/slingshot), is a working art studio and gallery in Santa Barbara. The 38 artists with disabilities supported by the program have access to a variety of mediums, including ceramics, painting, drawing, sculpture, mosaic, assemblage, printmaking and fiber arts. The gallery is open 8:30 am - 4:30 pm during the week and by appointment on the weekend. Check facebook.com/slingshotartforum for information, updates and exhibition dates. The SlingShot gallery offers visitors an opportunity to purchase unique art and meet the artists as they work. Since 1980, Alpha has promoted artists with developmental disabilities through participation in gallery and juried art shows. The artists are recognized for their talent and have developed dedicated collectors. The SlingShot Gallery provides their artists visibility and access to the rich local art world. It also gives the Santa Barbara community access to their unique and beautiful visions. As a recent gallery visitor stated, “This place is a community treasure.” The artist’s work is notable for its raw creativity. Each piece, whether a drawing, painting, sculpture or textile, tells a story reflecting the perspective of that artist. The open studio environment is designed to encourage creative expression and the on-site gallery located near downtown offers an exhibition space that fosters a supportive link to the Santa Barbara art community. Artist Representative and Community Liaison Sue Dumm remarks, “Our artists feel proud and empowered when they exhibit in our beautiful gallery.” Mike Blaha, an art instructor at the studio 4 | TriLine | Summer 2015
(and professional working artist), enjoys watching artists evolve in their work, especially as they master techniques like printmaking, mosaic and pointillism. “Some styles and interests remain constant, while others shift perspectives.” One artist glues mosaic tiles to a customordered piece, designed to fit the buyer’s wall and color scheme. Another embroiders, while printmaking and drawing fill the main studio. Ceramic and sculptural artists have their own studio. The gallery offers a space for art exhibitions, receptions and artists talks, as well as an on-site venue for artists to sell greeting cards, t-shirts, ceramics, shrink-art jewelry, coloring books, paintings, fiber arts and prints. According to Sue, visitors often return to see what SlingShot artists are creating. “They recognize the quality of the work.” Sue continues, “This artwork is an important contribution to the contemporary art world. We are helping to bring it to the community. In doing so, we hope to transform assumptions about people with disabilities.” Alpha Resource Center has been a longtime advocate of the artistic potential of people with developmental disabilities. At a time when macaroni, paste, paper plates and dime-store paintbrushes were the predominant art mediums in many programs, Alpha introduced artists to canvas, acrylics and sable brushes. The intent was to allow the artists to produce work from their own imagination with minimal influence by instructional staff. Alpha artists
Artists and Artwork at Sundial Studios in Santa Barbara
“Some of our people show their work in galleries, as well. It’s lovely to see their artistic talents grow.” (805-782-8890.)
produce imaginative and compelling work, competing in juried shows. Alpha opened SlingShot with confidence in the potential for artistic growth, recognition and financial gain for their unique artists. SlingShot is participating in Santa Barbara’s 1st Thursday Art Walk every month at their 220 W. Canon Perdido Street location. PathPoint’s Community Access Programs provide a wide range of activities for the people they serve. An adaptive arts program enables individuals to enhance their skills and create remarkable contemporary pieces in a nurturing, inclusive studio environment. “PathPoint provides the supports necessary to allow people with disabilities to gain self-confidence and express their whole selves,” states Alana Walczak, Vice-President of Santa Barbara County. Artist Sue Ann Fredericks says, “I like it when I sell a painting. Sometimes my work makes someone smile, and then I smile too.” Visitors are welcome to view the art on display or visit the working art studio in downtown Santa Barbara any weekday by appointment (805-961-9200). PathPoint also supports art programs in San Luis Obispo and Atascadero. Artists produce original paintings, drawings, cards and magnets. This year, all of the artists submitted work in the Paso Robles Fair. An annual benefit art show and reception is held the first weekend of December, where artists show their work and receive 50% of sales. The remainder goes to support the program. “We have a lot of fun,” remarked Laura Brown, Supportive Services Assistant Coordinator.
UCP Work Inc.’s Sundial Studios is located in Santa Barbara’s artsy Funk Zone. Manager Michael Craig explains, “This is a stand-alone business. UCP Work Inc. offers art classes through their day program, but this studio is open to all community members. It’s a community-integrated program. There is also a Sundial North in Santa Maria. It’s part of the UPC Work Inc. day program. We show their work in our gallery.” Michael continues, “We have people with disabilities employed in the crew here. They earn an hourly wage and are enhancing their work skills. We’re hoping to add as many more work opportunities as possible; running the gallery, even doing wine tastings… we’re always looking for volunteers, instructors and artists. We collaborate with community artists as well.” Artists work in a variety of media at Sundial, including painting, beading and jewelry making, sculpture, lapidary, ceramics and performance art. Upcoming events include Second Friday Funk Zone Art Walk and fairly regular First Thursday events. A shuttle brings art visitors to the gallery from State Street near the Granada Theatre. Artists currently featured at Sundial include Kyle Allan, who makes popular drawings with images of the Santa Barbara Mission, sometimes in unusual situations… for example, riding on a flatbed truck. His work was featured recently in a Carpinteria Arts Association’ show. Kyle has recently expanded his work to use of clay tiles. Brian Raleigh paints at the studio regularly. His work was featured on the gallery’s latest brochure. Others work in a variety of mediums. There are regular receptions to sell the ceramics, paintings, cards and jewelry that the artists produce. (www.sundialstudio.org). These art industry incubators throughout the region share in kindling creativity with beautiful results. For art that moves the heart and spirit, these galleries deserve a lingering visit. Summer 2015 | TriLine | 5
The Importance of Humor
© Gund Publishing, Inc.
The Anderson family business teaches about the experience of people with autism as they process language, incorporating a healthy dose of humor in their message. by Heather Wennergren, Media Coordinator Along with literal interpretations causing confusion, auditory stimulation can contribute to a noisy environment externally and internally for children with autism. “The playground can be the worst part of the day for a kid with autism,” commented Linda, “it’s unstructured and loud.” Due to his literal interpretation of language, Brent regularly experienced frustration and anxiety with communications in his early years. “His is a story of an isolated young man, sitting at his computer playing his favorite games,” began Brent’s TCRC Service Coordinator, Larry Rice. “He moved with his mother in December 2008 from Colorado to California. TCRC was Linda, Brent and Jenny Anderson with Dog Jessie contacted to check out possible supports Double meanings, double entendre’ and services. Brent has overcome a life of Jenny and Celebrate Autism (where – hearing a phrase with a literal interpretachallenges and grown into an amazing, tion – this can be a challenging experience Brent serves as “Resident Autism Expert”) sought-after, national public speaker today.” were chosen to participate in the Seed for people with autism. Spot business incubator in Phoenix, Linda Anderson takes care of business. As Arizona in December 2013, culminating Together, Brent Anderson and his mother, an entrepreneur, she has created online Linda, co-wrote the book Unintentional enterprises selling children’s clothing and Humor; Celebrating the Literal Mind®. (Find a small publishing company. She and the book at unintentionalhumor.com/ Brent have just completed a sequel to their shop). The book, based on Brent’s interpopular book. They sell t-shirts and greetpretation of language, includes idioms, ing cards as well. expressions, and collective nouns, along with their literal interpretation com“Now people are sharing stories of their municated with a sketch, for concepts children’s literal interpretations of language such as “school of fish”, “a band of goriland situations, comments Linda. “Our las”, and “computer mouse”. Linda smiled, second book includes examples of other “You draw this stuff out, and it’s hilarious.” families’ experiences as well as Brent’s She continued, “It’s been an awesome continuing interpretations of his auditory process. Brent is now involved in this world. We’ll never run out of material.” business every day… I enjoy researchLinda reflects, “I never imagined where it Have a Cow ing words, expressions, and idioms. Now (book publishing) would be today; I just in delivering a three-minute pitch before Brent is doing some of the research too. thought it would be a fun thing for us to an audience of a thousand people. They Brent approaches his experience with an do together.” won $25,000 from the Pakis Family Foununderstanding and sense of humor that dation. Listen to Jenny’s presentation at wouldn’t have been possible before.” Service Coordinator Larry Rice provides vimeo.com/82126966. a backstage view of Brent’s accomplishLinda and Brent’s sister, Jenny, 27, have ments. “Brent hit bench marks along the Brent, now 29, had a lot of anxiety growco-founded a nonprofit organization, way after moving to California, going from ing up, experiencing confusion and Celebrate Autism. Celebrate Autism is a toe-in-the-water, take a look approach, to frustration from a world in which he dedicated to helping young adults on the attending a day class 4 to 5 days per week. interpreted his own version of a reality of He made friends and settled in. Soon afterautism spectrum create productive lives. language. He avoided the monkey bars, They have developed a curriculum to wards, he applied and was accepted into teach entrepreneurial skills and encourage out of a fear of becoming a monkey. And the ARC Training for Independent Living the understanding of children’s games employment opportunities. It is currently (TIL) program in Ventura. He began learncould be a source of fear, “Mom,” he being used at the Temple Grandin School ing to become independent, and then confessed to her one day, “I tried so hard in Boulder, CO and other organizations applied and was approved for SSI income never to step on a crack.” across the country. which prepared the way for independently 6 | TriLine | Summer 2015
“Today, autism is a more common diagnosis” Linda points out. “Back in the day, I jumped into getting every service available. Insurance didn’t recognize it. Brent attended Special Education classes until he started at a private school for kids with disabilities. Any activity, especially with peers, was difficult for him. When he got to Community College, he was floundering. I hired a job coach, who found him a job at a grocery store. He was 21 years old, and just completely losing it. He’s always been so positive… but as a young adult, he was angry, upset and miserable.”
Pig-out
© Gund Publishing, Inc.
Brent’s long-time speech therapist, Andrea Mann, in Boulder, Colorado, spent hours teaching him the meaning of ambiguous phrases and expressions. She reminded Linda, “He’s so literal. He learns from pictures. He thinks in pictures. When he hears something, he gets a picture.” Linda asked for a book on the subject, and the therapist replied, “There isn’t one. Why don’t you write it?”
“So we started to write a book,” Linda recounted, “I told Brent, ‘I can’t write a book about you; I want to write a book with you.’ He said ‘yes,’ so we hired the perfect cartoonist! Brent described to him the visuals. We spent hundreds of hours on it. Alan Lewis draws incredible cartoons, and they completely collaborated, over the years. We published the book three years ago.
We’ve sold over 4,000 copies. We created an entire business around the book which includes Brent as an inspirational speaker.” The family travels the nation speaking at conferences about Brent’s experiences. “We’ve spoken at over 50 venues all around the country in the past two years. Presenting is a huge opportunity to make an impact and provide information about how people with autism may perceive what is heard. It’s a great way to find shared understanding. It’s added such an incredible measure of love and light to Brent’s life; people say, ‘You’re such a role model’”. Brent wasn’t originally enthusiastic. “If I wasn’t involved (in writing the book), it might have felt like it was making fun of me. When we first wrote it, I wasn’t exactly ecstatic about it. But then with time, I got used to it, and now I love doing events around it. Sometimes we’re an exhibitor, at a table telling people about the book; sometimes we have a presentation, not just about the book, but about the entire journey that my mom and I have made. It’s more about why humor is important, not just for people with autism, but also for everyone. We have the talks at schools, conferences, and all kinds of places.” He has learned to speak publicly and to present with a great sense of humor. “It’s fun, and it took some getting used to, and I’m comfortable with it now. It’s exciting when we do events, like the ones we did last year in Missouri, Wisconsin and Minnesota.” The benefits of sharing his message about teaching humor to the literal thinker suit him. “I’m a lot happier, much happier. I’m happier socially. I feel like I’m really having a positive impact on people.” Many professionals are known to use the book in their practices, to illustrate the processes of a literal mind. Richard Mesaros, an autism expert with a specialty in special education, uses the book to illustrate interpreting and processing language. “Whether people with autism are verbal or not, I believe the processing of auditory language is different. I especially
want teachers to get this,” Linda expresses. “Expecting a person with autism to fully process the subtleties of auditory language is similar to the experience that persons with dyslexia have for the written word.” Dr. Andrea Samson, of Stanford University, has conducted studies about autism and humor and shares the results of her work with Brent, who uses the information in his presentations. “We had to teach Brent about humor,” Linda shares. “Humor is healthy and healing, and encourages social interaction and friendships. By understanding how people with autism process humor, we can help them, as it doesn’t come naturally. In our presentation, Brent talks about why he likes certain kinds of humor, and doesn’t like others. It breaks barriers.” “Kids with autism have talents as other kids do,” Linda sums it up, “we can help them to be successful with their particular interest and skill to develop a business that allows them the quality of life they want. My son at 22 did not want to live at home; and the fact that he’s in his own apartment, doing well. He makes me so proud. He still receives a lot of support, but he lives independently. All I wanted for my kids was that they enjoy their lives, have self-esteem and feel good about themselves...that they be healthy and happy and safe. It’s been such a phenomenal transformation for our family.” You can connect with the nonprofit at CelebrateAutism.com and @CelebrateAutism on Twitter and www.facebook.com/ CelebrateAutism.
© Gund Publishing, Inc.
living in the community. In 2013 he graduated from TIL and moved into his own apartment. In the meantime, while living at TIL, Brent co-authored the book and the family started the nonprofit.”
Let the Cat Out of the Bag
Summer 2015 | TriLine | 7
SANTA BARBARA COUNTY
Events
Santa Barbara County
ALPHA RESOURCE CENTER FAMILY RESOURCE CENTER email: info@alphasb.org / www. alphasb.org
Santa Maria Office Santa Barbara Office 805.347.2775 877.414.6227 805.683.2145 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 ~ Assists parents of children with special needs to gain the knowledge and skills to enable their children to be all they can be.
SANTA BARBARA SPECIAL NEEDS ADAPTIVE PROGRAMS WEBSITE A wide variety of 100+ community resources, events and information supporting our area special needs agencies. Find activities for all ages posted on website. www.sbSNAP.org PARENT-TO-PARENT SUPPORT Sponsored by Special Needs Network. Meets 2nd Monday of every month, at noon at Denny’s at 1019 E. Main Street, SM. Contact: Diana 805.937.8756. CITY OF SB PARKS & RECREATION DEPT Check out what they have to offer. Contact: Adapted Programs 805.564.5421.
Parent-to-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 and young adults 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. CALL ALPHA FOR MONTHLY PARENT TO PARENT SUPPORT AND EDUCATION ACTIVITIES CLUB DIVERSITY First Friday of each month, 7pm-10pm, Jodi House, 625 Chapala St, SB. All ages welcomed, alcohol-free, inclusive event. Club Diversity is about meeting new friends, having fun and working together to eliminate barriers between able bodied individuals and those with disabilities. $3 fee, $1 refreshments. DJ & Live Sound, DJ of Ability, Chris Benedict 805.729.1512 or djofability@gmail.com 8 | TriLine | Summer 2015
SANTA MARIA SPECIAL EDUCATION & SUPPORT INFORMATION Kathy Rowley hosts a Yahoo Group for parents of children with special needs who live in Santa Maria. Join at 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. ALPHA PARENT GROUP A parent support group meets regularly
at Alpha Resource Connections library at TCRC. Contact Jennifer Griffin at jgriffin@ alphasb.org or call Alpha at 805-683-2145. ART OF AUTISM The Art of Autism has various events around Santa Barbara County throughout the year. Visit www.the-art-of-autism.com or email theartofautism@gmail.com. SBATA@YAHOOGROUPS.COM Online group for parents of special needs children, email info@asasb.org. NEW DIRECTIONS TRAVEL CLUB Come join this fun club for adults with special needs who love to travel! We meet the 3rd Tuesday of each month 5pm-7pm for dinner and travel presentation. Call 805967-2841 for dates and meeting locations. AQUATIC WELLNESS AND EXERCISE TUOHY FOUNDATION AQUATIC CENTER 2415 De la Vina Street, SB. Wheelchair accessible with depths from 3 1/2 ft. to 6 1/2 ft) Aquatic exercise equipment is available to pool users. Aquatic Wellness and Exercise Programs are open to the public and instrumental in helping participants meet their personal fitness goals. Organized by Cottage Hospital Rehabilitation Center. Apts. required for classes, phone (805) 5698999, ext. 82552 or http://www.sbch.org 6TH ANNUAL DSASBC BUDDY WALK & FESTIVAL 6th Annual DSASBC Buddy Walk and Festival, Saturday, June 20, 2015, Chase Palm Park Great Meadow, Santa Barbara – Volunteer, Fundraise, Sponsor and Register online at www.dsasbc.org NORTH COUNTY PARENT SUPPORT GROUP Meets regularly in Lompoc. Come share your experiences, meet new people and get resources while your children play. All are welcome. For details, contact Jennifer Griffin at 805-683-2145 or jgriffin@alphasb.org SPECIAL OLYMPICS SOUTHERN CALIFORNIA Santa Barbara County Region offers yearround sports programs and competitions for 350 children, teen, and adult athletes
from Carpinteria, Santa Barbara, and Goleta. Fall sports for youth and adults are set to begin in August. Sports include floor hockey, bowling, soccer, tennis and softball. Call 805-884-1516 to learn more. SUMMER CAMP AND ACTIVITY GUIDE Available online at www.sbSNAP.org SANTA MARIA NONVIOLENT CRISIS INTERVENTION TRAININGS Program focuses on management of disruptive, assaultive, out-of-control behavior. Initial Course designed for school staff. Refresher Course: to renew certification. Phone: 805-683-1424 or http://sbcselpa. org/Events.aspx ADAPTED GOLF PROGRAM Mondays: 9:00 to 11:00am. Santa Barbara Golf Club, 3500 McCaw Ave, Santa Barbara. Designed for persons with physical, visual or cognitive impairments. $8.00 for 30-minute lesson, or 6 lessons for $30. Includes: putting, chipping, and/or driving with occasional use of the golf course. Program is wheelchair accessible. Organized by René Van Hoorn,RTC. 805-569-8999 x82102 3-2-1 FAMILY PLAY GROUP FOR PARENTS THAT HAVE CHILDREN BIRTH - 4 YEARS OLD WITH DOWN SYNDROME Meets monthly at various locations to help parents of children with Down syndrome birth through 4 years old and siblings of similar age to connect and play with other families. For details and monthly updates, contact Carmen Esquival at carmenesq@ gmail.com or 805-284-3896. INCLUSIVE CHEERLEADING! Spring and Fall - Santa Barbara location. Challenger Cheerleading - Inclusive of children and teens of ALL abilities to learn cheer, dance and stunts for community performances. Instructed by local Cheerleading coaches/camp instructors. Fees: $35 per child includes practice uniform and pom poms. Contact Retta Slay 805/6819165. Organized by college students and community volunteers. YOGA FOR ALL Inclusive for all abilities *4-6 week sessions run throughout
Santa Barbara County the year at the Goleta Valley Community Center. Come stretch and flex with Jessica Parson and Rachel Walsh; bring your own mat, towels and water bottles. $5 per session, drop-in anytime. Parents welcome to join, 805-681-9165 or www.sbSNAP.org MUSIC with SWING Along Band including Wheel Chair Dancers for Adults -Seniors! Every Tuesday and Thursday, 10:30 am to 12 pm – Wheelchair users and those with special needs are welcomed to join the twice weekly adult/senior social dance group that meets at the Goleta Valley Community Center -Organized by GVCC Senior Center; Contact Amey at 805-683-1124. *2nd location at the Carillo Rec Center, Tuesday classes 4:30 - 5:30 through August, 805-564-5421 SB MOPS = MOTHERS OF PRE-SCHOOLERS Every other Wednesday during the school year from 9am to 11:15am – Calvary Chapel Santa Barbara. We have put this site together to help all you moms out there keep track of current MOPS activities as well as have a place to contact us or just learn more about our group! Organized by Joylyn Kovacevich Joylyn@sbmops.com CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE) August 29th - Nov 7, 2015 10:00 - 11:30 am: Santa Barbara Location. Boys and Girls ages 5-18 with physical, developmental, intellectual challenges are invited to participate in this increasingly popular sport. Wheelchair users included! Sign up NOW! Flag Football and CheerLeading Registration forms at www.GoChallengers.org. Organized By: Central Coast Challenger Volunteers (Retta Slay) Phone: 805/681-9165 BEACH DAY AT LEDBETTER BEACH May 30 & 31 and August 29 & 30, 2015 8:30 am - 1:00 pm: Ledbetter Beach. Surfing, bodyboarding, kayaking experiences and more for adventurous children with special needs. Volunteer life guards and experienced volunteers support your child in the water; adapted equipment for those with limited mobility too. Register RIGHT away for this popular program. www.bestdayfoundation.org/sba
ASASB SURF AND SAND BEACH DAY FOR ALL August, 2014. Campus Point, Santa Barbara. Learn to surf, kayak, and boogie board. info@asasb.org NEXT CHAPTER BOOK CLUB FOR ADULTS WITH INTELLECTUAL DISABILITIES (SPONSORED BY DSASBC) The Next Chapter Book Club offers weekly opportunities for people with developmental disabilities to read and learn together, talk about books, and make friends in a relaxed, community setting. Emergent Readers (nonreaders) welcomed! volunteer facilitators lead our book clubs. Contact Amy Brooks 330-603-7507 for locations of book clubs in Ventura and SB County; and Volunteer Facilitator Trainings.
SANTA BARBARA COUNTY
CHALLENGER SUMMER CAMP WITH THE SB FORESTERS Girsh Park, June 29, 30 and July 1, 2015. Enjoy three mornings of T-ball, baseball skills camp and fun games, relays and summer activities by our local baseball champions, the Santa Barbara Foresters. Camp is 10 til Noon. Challenger volunteers support our players, $20. for snacks, and T-shirt! Dates and schedule online soon at www.GoChallengers.org. CHALLENGER FALL BALL SKILLS CLUB Meets Sundays, 3-4:30 pm, beginning Sept 6 through October 25 at Goleta Valley South Little League fields behind the Page Youth Center, 4540 Hollister Avenue, SB. www.GoChallengers.org. BASKETBALL SKILLS CLINIC AT PAGE YOUTH CENTER For kids and teens with special needs, indoor and outdoor courts. Six Tuesdays, every Spring and Fall from 3:45 - 5 pm. Check schedule at www.sbSNAP.org. MONSTER BALL GAMES AND SPORTS AT GIRSH PARK Children 4 -age 22 can participate with MONSTER sized inflatable sports balls led by our volunteers - volleyball, basketball, soccer, baseball and MORE! Come ready to play - Sunday, October 25, 2- 4:30 pm at Girsh Park. www.sbSNAP.org. Summer 2015 | TriLine | 9
Santa Barbara County
Independent Living Skills Boot Camp
New Summer Camp, Ages 14 to Young Adult in Santa Barbara and Thousand Oaks
SAN LUIS OBISPO COUNTY
Offers a unique summer camp experience featuring independent living skills in natural environments. Campers engage in meaningful, real-life experiences while having fun with peer mentors. Campers will learn about: • Community resources • Menu Planning • Cooking • Meal Prep • Cleaning • Health & Hygiene • Public Transportation • Recreation • Shopping • Volunteerism Experienced staff use evidencebased practices while supporting choice-making and interdependence. Input from campers and their families directly informs activities,
and camper progress is measured via observations and questionnaires.
Eight one-week sessions, Monday Friday, 10:00 am to 3:00 pm The first session starts the week of June 22, the final session is the week of August 14. Sign up for one week or several. Each week-long session costs just $250 and teaches meaningful skills in community settings. This unique day camp features collaborative
leadership from the fields of special education, recreation therapy, psychology, and rehabilitation counseling. For detailed questions, contact molly@reidsgift.org or 310-853-0794 Camp is offered in Thousand Oaks in collaboration with CRPD Therapeutic Recreation and Santa Barbara in partnership with Santa Barbara Parks & Recreation and the Down Syndrome Association of Santa Barbara County. SANTA BARBARA Register for specific weeks at: SantaBarbaraCA.gov/register or call 805-564-5421. THOUSAND OAKS - SOLD OUT Register for specific weeks at: http://crpd.org/programs/ or call 805-381-2735.
San Luis Obispo County PARENTS HELPING PARENTS FAMILY RESOURCE CENTER email: php@ucp-slo.org www.phpslo.org San Luis Obispo Office Atascadero Office 800.456.4153 x3277 805.461.7415 or 805.543.3277 PARENTS HELPING PARENTS FAMILY RESOURCE CENTER PHP serves families of children with special needs throughout San Luis Obispo County. Two lending libraries, which cover a wide variety of special needs topics, are equipped with toys, games and a place for children to play while their parents browse. PHP has a network of experienced staff 10 | TriLine | Summer 2015
and parents available for mentoring and support. A reliable source of current information, referrals, and training, PHP regularly e-mails a Calendar of Upcoming Events to interested families. Contact: 805.543.3277 (SLO) or 805.461.7415 (Atascadero) or php@ucp-slo.org www.facebook.com/ParentsHelpingParentsSLO/ PHP SPONSORED EVENTS AUTISM MEET UP Join us in Atascadero for this new monthly get together where we can share information and support related to our children on the Autism spectrum, and share the challenges and successes as a community!
First Wednesday of every month from 1011 am. Next date is Wednesday, June 3, 10-11 am. Parents Helping Parents, 7305 Morro Rd, Suite 104A, Atascadero SPEECH/LANGUAGE Join Lesley A. Goodman, SLP in her monthly workshop as she explores issues related to Speech and Language Development- an ideal workshop for anyone whose child is receiving speech services or who has concerns about their child’s language development. Focus is on children ages 0-5. Next date is Monday, May 18, 9-11:30 am PHP 940 Ramona Ave, Suite M, Grover Beach. Please RSVP ASAP as space is limited.
MAKE & TAKE Parents can build materials for their children’s intervention program such as: picture activity schedules, icon exchange materials, visual schedules, social stories, visual prompts, etc. There will be computers, printing supplies, laminating supplies, etc. on hand. Training and support will be provided by Rebecca O’Gorman-Trimbath, BCBA and Director of Praise Behavior Services. One Monday a month: May 18 from 9-11:30 am and June 15 9-11:30 PHP 940 Ramona Ave, Suite M, Grover Beach. Please RSVP ASAP as space is limited. GET CONNECTED AT PARENTS HELPING PARENTS For parents and their children ages 0-5 years old. Come check out our new resources! Meet other parents and PHP’s staff. In May PHP will be collaborating with Coyne & Associates to provide workshops on specific topics such as Behavior and Speech and Language Development. *SAN LUIS OBISPO – SUMMER ACTIVITIES Let’s get together and talk about the diversity of summer activities our county has to offer. Wednesday, June 10, 10-11 am PHP Library, 3450 Broad St, Suite 111, SLO *ATASCADERO – SPEECH AND LANUAGE DEVELOPMENT Promoting language skills across the day: a special workshop with Sally Moore from Coyne & Associates. Thursday, May 21, 10-11 am. PHP Library, 7305 Morro Rd, Atascadero. TOILET TRAINING WITH COYNE & ASSOCIATES Thursday, July 16, 10-11 am PHP Library, 7305 Morro Rd, Atascadero. RSVP: php@ucp-slo.org or 543-3277 EXPLORING DISABILITY BENFITS (FORMERLY REPRESENTATIVE PAYEE SUPPORT GROUP FOR SSI) A monthly support group for family members who have questions about their children’s SSI, Medi-cal or IHSS. We offer in-
San Luis Obispo County sight, research and support with navigation through the various issues, paperwork and services involved with disability benefits. Friday, June 26 from 10-11:30 am PHP Library, 3450 Broad St, Suite 111, SLO RSVP to php@ucp-slo.org or 543-3277 ALTERNATIVES TO CONSERVATORSHIP Explore strategies and tools to protect your child in the future while fostering independence! Presented by Katherine Mottarella, Supervising Clients’ Rights Advocate & Attorney Office of Clients Rights Advocacy Disability Rights California Thursday, June 25, 6:30-7:30 pm PHP Library, 3450 Broad St, Suite 111, SLO LOCAL EVENTS UNITED CEREBRAL PALSY (UCP) UCP’s Family and Youth Services are dedicated to providing full access for children and adults with disabilities in the community. Please contact UCP for more information about Kids & Teens Club, Teen Camp, Adult Camp, Leisure Club, and Community Integration Programs. 543-7102 ARTS FOR LIVING (UCP) So many great opportunities for music! Two Music classes in SLO and one in Atascadero. And a Glee Club- an inclusive community choir- every Wednesday. April-June. $12 per session, and scholarships are available. Transportation can be arranged. Call Laura at 225-6101 or email her at Ldeloye@ ucp-slo.org. TRANSITIONS MENTAL HEALTH ASSOCIATION (TMHA) There are wellness centers in SLO, Arroyo Grande and Atascadero offering a calendar full of classes and support groups. Contact 503-0350. www.t-mha.org
Visual Schedules, Transitions and Routines that Build Independence MORRO ROAD EDUCATION CENTER (MREC) 8005 MORRO RD. ATASCADERO There is no fee. Special educators, parents and care-providers are welcome. SLP CEUs Available Please call or email Debbie Stone to register at least two weeks before the date of the workshop. Phone: 782-7302 Email: dstone@sloselpa.org
SAN LUIS OBISPO COUNTY
CALL FOR ARTISTS Did you know that the Regional Center displays art made by its clients on the walls of the hallway? If you know of a talented individual that would enjoy this opportunity, contact Marianne at TCRC. 543-2833 STRIDE’S FRIDAY CLUB A free weekly program put on in conjunction with the SLO Special Olympics. Every Friday for three hours, between 10 am and 1 pm (in one hour sessions by age group), kinesiology students interact with individuals with special needs and partake in different forms of sport and exercise together. It takes place at our Recreation Center, in the main gym. Where: Cal Poly’s Recreation Center Main Gym When: Every Friday 10-11 am (elementary -high school students) 11-12 pm (young adults) 12-1 pm (older adults) For more information, email kinesiology@calpoly.edu or Michael Lara at mlara@sosc.org SWIMMING Paso Robles Sports Center has two instructors who have experience with special needs: Jodi McDowell and Jaclyn Parson. Group, semi-private and private lessons available. Contact at jmcdowell@caclubs.com or 805-239-7397
PROFESSIONAL DEVELOPMENT WORKSHOP SERIES EVIDENCEBASED PRACTICE IN AUTISM California Department of Education Diagnostic Center Central California Presenters: Ananda Aspen Michelle Austin. Sponsored by SELPA. Wednesday, April 29, 2015 from 3:30-5 PM Summer 2015 | TriLine | 11
VENTURA COUNTY
Ventura County AUTISM SUPPORT AUTISM PARENT SUPPORT GROUP (ENGLISH) Meets 2nd Tuesday 7 - 8:30pm in Oxnard. Families meet to share the experiences they’ve had with their children with Autism and to learn about resources. RAINBOW CONNECTION FAMILY RESOURCE CENTER email: rainbow@tri-counties.org Oxnard Office: 2401 East Gonzales Road, #100, Oxnard, CA 93036 Monday through Friday 9:00am to 5:00pm (805) 485-9643 Main Phone (800) 332-3679 Toll Free (805) 485-9892 Spanish Line Simi Valley Office: 2635 Park Center Dr., Suite A, Simi Valley, CA 93065 Monday through Friday 9:00am to 5:00pm (805)823-2325 Main Phone (805) 485-9892 Spanish Line Website: http://rainbowconnectionfrc.weebly.com or find us at Facebook: http://www.facebook.com/RainbowConnectionFRC. Rainbow Connection provides support, information, training and activities for families. Here is a list of on-going support groups. We encourage you to attend a support group at least once. You will be surprised at how much it will help you and how much you can help others. As there might not always be a support group available for a specific diagnosis, we try to provide a parent match upon request. Please contact us to register or for a copy of the current “What’s Happening at Rainbow?” schedule of activities. ACTIVITIES ADULTS RECEIVING SERVICES SOCIAL TIME FOR ADULTS (BILINGUAL) SANTA PAULA Meets 2nd Sunday of the month. Come, bring a friend or just come meet new people, for conversation, playing games or for refreshments and some fresh air. 12 | TriLine | Summer 2015
learn about our resources and talk about issues related to raising children with special needs. SIMI “APRENDIENDO JUNTOS” SUPPORT GROUP 5:30 – 7pm Meets 1st Wed of the month at Rancho Simi Community Park.
AUTISMO SUPPORT GROUP (SPANISH) Meets 4thThursday of the month, 7 8:30pm in Oxnard. Families meet to share their experiences, resources and information.
SANTA PAULA “FAMILIAS UNIDAS” SUPPORT 8:30 – 10am Group Meets last Monday of the month at Mill Park, Santa Paula.
DOWN SYNDROME SUPPORT
INFORMATIONAL
DOWN SYNDROME SUPPORT GROUP - SPANISH Meets last Tuesday of the month, in Oxnard 6:30 pm – 8:00 pm. Families have open discussions on issues related to raising children with Down syndrome.
THE IEP BASICS – ENGLISH OR SPANISH By request, in person or *Schedule your individual appointment Special Education basic IEP information will be shared by a Rainbow parent. Knowing your rights and responsibilities can help you be a more effective advocate for your child.
SUPPORT FOR ALL SPECIAL NEEDS ADULTHOOD (22YRS THROUGH LIFE, TCRC PERSON SERVED): THE JOURNEY CONTINUES “SPECIAL FAMILY NETWORK “ 7pm – 8:30pm in Oxnard. Meets 2nd Tuesday of the month. English Parents/caregivers support group for families who have an adult family member ages 22 and older with special needs. Join us as we endeavor this journey together as well as share resources for our grown children. *Registration Required. SANTA PAULA SUPPORT GROUP - SPANISH Meets 1st Monday of the month 5:30pm – 7:00pm at Heritage Valley-ARC Families meet to share the experiences and resources. SPECIAL FAMILIES SUPPORT GROUP - SPANISH Meets last Tuesday of the month 6:30pm – 8pm in Oxnard. Families meet to share the experiences and resources. SANTA CLARA SUPPORT GROUP (SANTA PAULA, FILLMORE, PIRU) - SPANISH Meets 3rd Tuesday of the month 10:30am – 12 noon. Families meet to share the experiences they’ve had with their children with special needs and learn about resources. SIMI SPECIAL PARENTS NETWORK - ENGLISH 9:30 – 11am, 3rd Tuesday of the month in Simi. Come and join us for a cup of coffee,
“ONE - PAGER” DEVELOP A ONE - PAGER FOR YOU OR YOUR FAMILY MEMBER Create your child’s (or adult served by TCRC) One-Pager. This is a great way to share valuable information. Simply give a copy of the One-Pager to the people who will be interacting and working with your child/adult – the teacher, aides, therapists, etc. Give us a call and we’ll help you put together your child’s/adult’s very own One-Pager. Individual Appointments can be scheduled upon request. For persons receiving services through TCRC. HEALTH CARE NOTEBOOKS Do you have a hard time keeping track of your health care information? Create your own personal notebook with a Rainbow staff person and/or other parents; learn more about the transition process and get suggestions that might help with guidance from one of our staff and/or other parents. Individual Appointments can be scheduled upon request for persons receiving services from TCRC WHAT’S NEXT AFTER EARLY START? Will your child be turning 3 years old and transitioning out of the Early Start Program? Changes can be confusing. Let’s make the transition a little easier. Schedule an appointment today! You will receive a free booklet that has been helpful to other
parents. Individual Appointments can be scheduled upon request. For persons receiving services through TCRC and the school Early Start Program. OTHER COMMUNITY SUPPORT GROUPS The following support groups can be contacted directly. AAC PARENT SUPPORT GROUP This is a great opportunity to meet other families with children using communication systems (e.g., picture systems, speech generating devices). Please contact Traci Peplinski with any questions, to RSVP and for directions. Space is limited. (805)8443003 traci.peplinski@gmail.com BRANDON’S BUDDIES A free play date for children of all abilities. 1st Sat of the month 11am – 1pm, at Brandon’s Village, 25801 Thousand Oaks Blvd. in Calabasas. Go to www.kenproject.com to view calendar. CENTER4SPECIALNEEDS Organizes Mom’s & Dad’s Night Out events and a Mom’s Coffee Break. http://center4specialneeds.org CHALLENGER BASEBALL NOW IN VENTURA Co-ed, ages 5-Highschool, registration starts Jan, Season runs from March-May. www.GoChallengers.org 805-681-9165. CONEJO RECREATION AND PARK DISTRICT’S THERAPEUTIC RECREATION IN THOUSAND OAKS Children and adults from all over the county attend activities. It is a model program throughout the State. For information call (805) 381-2739 or http://www.crpd.org/ parkfac/therapeuticrecreation/default.asp CONNECTING HIGH SCHOOL & POST SECONDARY PARENTS GROUP (BILINGUAL) 7pm-8:30pm in Oxnard 2nd Tuesday of the month *Alternates months in English and Spanish. Call to see which is meeting this month. An informal group of parents with students(16 – 21 yrs.) in high school and post secondary education who meet to share information and concerns on their children’s future.
Ventura County
FRIENDSHIP CIRCLE Designed to foster a relationship between community teenagers and children giving them a chance to develop social skills and experience diverse activities. Programs offered are Sports Night, Friends at Home, Gymnastics Programs, Sunday Circle, and a Winter Camp that includes Rock Climbing and Sibling workshops. Agoura Hills (818) 865-2233 www.FriendshipCircleCa.org
special needs aged 18-28. This group is designed to bring together families with representatives of local and state agencies, organizations, and groups to offer up to date information, insight and direction. Parents have direct access, the opportunity to ask questions and to be heard. For information on the next date and speaker, or if you would like to be added to the email list or if you have questions, Please contact Susan – susan@baukus.net
THE FUN CLUB A social and recreational opportunity for persons 5 -15 and 16 yrs & older with special needs through the City of Oxnard Adaptive Program. Call 805 385-8019 for info.
AUTISM
EFMP SUPPORT GROUP Meets 2nd Wednesday of the month at NBVC Port Hueneme Naval Base Support Group for active and retired military families with children with special needs. For information please contact Gil Cajala at: gil.cajala.ctr@navy.mil PAUSE4KIDS INC. – ENGLISH SUPPORT GROUP This support group is open to the public and there is no charge. If you plan to attend, please call or check the website to make sure there are no changes to the scheduling. For more info go to: http://pause4kids.org/ or leave a message at 805-497-9596 SPECIAL OLYMPICS VENTURA COUNTY Special Olympics Ventura County offers training and competition opportunities in 10 different year-round sports at over 20 different training sites throughout Ventura County. The Ventura County program not only provides people with intellectual disabilities with physical fitness and athletic competition, but also social interaction and community involvement. (805) 654-7787. www.vcso.org THE TRANSITIONS SUPPORT GROUP For parents of children and young adults aged 10 – 28 and young adults who have
VENTURA COUNTY
AUTISM SOCIETY VENTURA COUNTY (ASVC) ASVC holds Community Talk Nights usually on the third Friday of the month from 7-9pm in which guest speakers present on topics important to parents, and parents are able to mingle, socialize and network. Free onsite childcare is usually provided. http://www.autismventura.org/events/ For more information call 805-496-1632 AUTISM SPECTRUM AND RELATED DISORDERS SUPPORT GROUP Group meets 5:30-7:00 the 3rd Monday of each month at the Camarillo Health Care District. The group is free of charge and open to all who may benefit from the group, regardless of age of the individual who is diagnosed, specific diagnoses, or geographic region. Contact Jeff or call 805388-1952, ext. 100 to RSVP. ASAP: ASPERGER’S SUPPORT ADOLESCENTS PLUS (ENGLISH) A social support group for teens and young adults with Asperger’s or HighFunctioning Autism. For information log on to www.vcasap.org or call 805 419-9934 (new number). CHILDREN WITH EMOTIONAL, MENTAL, AND BEHAVIORAL DISORDERS UNITED PARENTS A parent run non-profit that helps families raising children with emotional, mental, and behavioral disorders. Office (805) 3841555
With each issue of the TriLine, 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. Summer 2015 | TriLine | 13
Naltrexone for Self-injury: The Drug that will Not Go Away by James O’Hanlon, Ph.D., Psychopharmacologist
The term, SIB, refers to repetitive acts of physical violence directed against oneself. These acts can vary in severity from arm-biting or skin-scratching without permanent tissue damage to eye-gouging and head-banging causing blindness and brain damage. Although typically developing individuals may acquire mental disorders that foster SIB, the phenomenon is more common in developmental disorders. The prevalence of SIB among individuals with uncomplicated intellectual disability (ID) varies from 2% to more than 25% in relation to the severity of disability. When ID is accompanied by autism the rate is approximately doubled. Comparably high rates are found in many different genetic disorders and even higher rates in some. From such a diversity of genetic starting points, one would not expect the brain dysfunction that underlies SIB to be the same in every case. However it begins, SIB can be exacerbated by pain, by the inability to communicate effectively, and by environments that evoke fear or boredom and/or restrict behaviors of choice. There are many factors that cause and perpetuate SIB and it would be naïve to believe that the same pharmacological treatment could counter them all. But no health care professional who has witnessed a child with severe SIB and the anguish of the child’s parents would hesitate to try any drug that has had a modicum of success. Naltrexone fits the description. 14 | TriLine | Summer 2015
A fraction of neurons in the brain release opioid transmitters that convey signals to other neurons by binding at specific receptors these express. β-Endorphin is the most widely known transmitter. Release of opioids in the brain provides short-term analgesia to an individual who has just sustained a serious injury. Euphoria is produced by natural opioids the same way that it is produced by drugs like heroin. Athletes are aware of the relationship between pain and euphoria: runners push themselves through the “pain barrier” for the pleasant experience of the “jogger’s high.” Naltrexone blocks opioid receptors. The drug was not developed for treating SIB and is not approved by FDA for this purpose. Yet over the last 30 years, numerous case studies and small, low-budget clinical trials have repeatedly demonstrated that naltrexone can be an effective treatment for SIB. Not every trial showed a beneficial drug effect but a recent review of the entire data base has concluded that naltrexone reduced SIB to some degree in about 50% of all cases.1 The initial impetus for trying naltrexone with individuals who engage in SIB came from recognition that many of them have an abnormally high pain threshold. It was thought that insensitivity to pain might result from excessive production of opioids in the brain. But opioids not only cause analgesia, they also produce euphoria. So the complete theory goes like this. Individuals engage in SIB because they are insensitive to pain due to high brain opioid levels and because this behavior elevates those levels to the point where pleasure reinforces SIB. If the theory is correct, naltrexone should change SIB from a reinforcing event to something that should be avoided. A case study published at length in the prestigious American Journal of Psychiatry indicates how this can happen.2 The patient was a 3-year-old boy with ID. He had a history of failing to cry or seek comfort after sustaining minor injuries in childhood accidents. SIB began with mild intermittent head banging when the boy was approximately 2 years of age. It
evolved into severe head hitting and arm biting throughout most of the day. After antipsychotic drug therapy had failed, the boy was given a trial on naltrexone, starting with low doses. Results were as shown in the figure. Initially the boy’s SIB worsened. His parents and psychiatrists were horrified but rather than stop the trial, they reasoned that what they were seeing might be an “extinction burst.” This could occur if SIB had been previously reinforcing but was no longer in the presence of naltrexone. The child’s natural tendency would be to increase SIB until convinced that whatever benefits it had in the past were gone. A courageous decision was made to increase the dose to a moderate level, which reduced SIB. Later, SIB returned and again the dose was increased, this time to a high level. SIB fell precipitously. For the next 2½ years, the psychiatrists struggled to keep SIB in check with the lowest effective dose. They largely succeeded. In my experience, naltrexone has significantly reduced SIB in about one-third of children and adults who were treated with naltrexone. No other drug has been even that effective. And, when it works, naltrexone usually does so without serious side effects. Common knowledge of these facts has for 30 years inspired physicians who specialize in treating developmental disorders to keep using naltrexone for SIB. It will not go away any time soon. Roy A, Roy M, Deb S, et al (2015). Journal of Intellectual Disability Research; 59: 55-67 2 White T, Schultz SK (2000). American Journal of Psychiatry; 157: 1574-1582 1
My Life Inside Peter Stoner’s chronicle of his early life in an institution. Additional excerpts will be featured in future issues of the TriLine. By Peter A. Stoner Early Years
My earliest memories prior to moving to an institution, are those of a little boy with cerebral palsy in 1950’s America. The 1950’s was a decade of paranoia and suspicion of anything out of the ordinary. The Red Scare was at its peak with individuals like Senator Joe McCarthy searching for Communists under every table. Newspapers were filled with articles about how to respond to a nuclear attack, because it was believed that Joseph Stalin and the Soviet Union possessed deadly nuclear capabilities. This threat injected fear into our nation’s heart (though at the time we had no idea what a paper tiger the USSR was, and that it would not survive the century, ending in total collapse in 1991.) In those days anything or anyone different from the “norm” was relegated to an environment where the unusual could be controlled. At the tender age of four, I was to discover that this included me. Clearly, the ‘50’s was not the ideal era to be a kid with a disability, and straight off I had three: I was born Polish, I was made Catholic, and I acquired cerebral palsy. My very first memory is lying on the carpet in my grandmother’s living room at four years of age. Since birth I had lived with my nuclear family: my mother, Marjorie, known affectionately as Fifi, my father Tony, an architect with the firm Adrian Wilson Associates of Los Angeles, and my older brother, Mark. Born in St. Joseph’s Hospital in Pasadena, California, on February 25, 1951, I bore the name Peter Anthony Fijalkowski for the first six months of my life. The Cold War probably had more than a little to do with the fact that shortly after my birth my father changed our family name to Stoner, in part because anyone with an eastern European surname was viewed with more than a little distrust at this time. We lived a few doors down from my Aunt Addie and Uncle Leonard, and another of my mother’s sisters, Aunt Bertha, who became a nun. Her name was Sister Ann Louis, and I remember her coming home dressed in full habit, everything covered but her face. Being only four years old, I could not for the life of me figure out what happened to her ears. The place erupted in
laughter when I voiced this concern. Aunt Bertha and I were always rather close, even after, as a young adult, I abandoned Catholicism and declared myself a Protestant. At a very young age, I remember losing my front teeth in a nasty fall, and how upset my mother was over this. I also remember going into the hospital to get my tonsils out and how upset I was at having to be separated from my mother for the first time! Shortly thereafter, my parents placed me into the first of 3 institutions that would be my home for the next 17 years. In the first of these places, at the tender age of 4, I figured out a rather unique way to move my wheelchair with my feet, without my feet ever touching the floor. I don’t know that I was any noisier than the rest of the kids, but I sure felt like I must be. At first I thought it was a game when the staff started taping my mouth. After I had lived there close to one year, my stay came to an abrupt end. My grandmother made an unannounced visit to discover me with arms and legs strapped to my bed and tape across my mouth. I’ve never had a desire to go back to that place, not even just to visit. After that, I lived a brief time at home with my family again, but soon they would find it necessary to reinstitutionalize me. I think my mother had a hard time dealing with my disability. I vaguely remember her insistence that I keep quiet whenever we were out in public. Was my mother embarrassed by my voice? Putting people with disabilities (the “handicapped”) into institutions was much more acceptable in those days. The fact that my father had been offered a job in the Phillippines when Adrian Wilson Associates opened an office in Manila made it practically a fait accompli. It was inevitable I would re-enter an institution. If I had to assign blame for my institutionalization, I would say it was the fault of the medical community of the 1950’s. My parents were encouraged by no one to keep me home with the family. And indeed, no support system existed for them to plug into. Now just a word about my disability, cerebral palsy: Clinically speaking, cerebral palsy is an umbrella term for many conditions
Peter using left foot to write
surrounding injuries to the motor portion of the brain before, during, or shortly after birth. I was told I acquired a form of cerebral palsy known as Terronic Neck Reflex (TNR), and that this was one of the most classic forms of cerebral palsy. I learned all this lying naked on countless clinic tables while doctors and wanna-be doctors discussed my case as if I weren’t there. I was quite the little star in the clinic world for awhile because I was such a prime example of TNR. Try eating while someone is yanking your feeding arm hard in the opposite direction. This is what it feels like to have CP on the very best of days. CP is not a disease. CP cannot be acquired through contact with a person who has it. Parents with CP are not fated to have children with it. CP is not the result of a spiritual or moral defect of either parents or children. Despite these facts, the popular media of the 1950’s equated CP with alcoholism or other socially undesirable conditions that needed to be eradicated. Small wonder parents of children with CP were made to feel ashamed, told to put their child away, and urged to move on with their lives. Peter Stoner is author of numerous articles and essays on topics ranging from personal perspectives on disability to euthanasia and political action. His most significant work, My Life Inside, is a memoir of his experiences in institutional living from age 6 till age 20, when he finally achieved independence as a pioneer in the early Independent Living Movement. With the aide of a Dynavox communication device, Peter has delivered public presentations locally, as well as testified on behalf of disability rights. Peter resides in San Luis Obispo where he writes independently by typing with his left foot. Summer 2015 | TriLine | 15
NONPROFIT ORG. U.S. Postage PAID Santa Barbara CA Permit No. 359
Tri-Counties Regional Center 520 E. Montecito Street Santa Barbara, CA 93103
Greetings from the President by Rachel Huff, President, TCADD Board of Directors self-employment, and microenterprises for persons with developmental disabilities. (For more information go to www.scdd.ca.gov/ Employment_First_Policy.) Assembly Bill 86 is the basis for enhancement of adult education in adult schools and community colleges. Learn The stories that I enjoy so much more at ab86.cccco.edu. in this TriLine are wonderful opportunities to learn about Unfortunately, I must also the dedication and creativity say that individuals receiving that goes into the making of services are living in a time a quality life. From artwork to where budget issues may affect public speaking to training for their services and supports. and getting a job, I know that The developmental services TCRC and its’ service providers, system is growing between 3% are working in partnership with and 4% each year. The funding people receiving services and doesn’t align with this growth. their families to make these For example, the Governor’s positive stories a reality. proposal in January 2015 for California’s 2015/2016 Budget As young people transition allowed for no rate increases for from high school to adulthood, providers and no cost of living vocational and creative adjustments for regional center. interests are so important. Training and employment I am concerned about the are being recognized in financial future of our system. both our educational and TCRC service providers are developmental services struggling to make payroll systems as one of the and pay their bills. What can important ways that quality be done? In a word, advocacy. lives are created and supported. Advocacy with and information I’m pleased to see resources for our legislators is a critical emerging to meet these needs. factor to our success in ensuring Employment First (Assembly Bill that the funding is provided for 1041) is facilitating the increase the regional centers’ growing of integrated employment, population. Legislators will
benefit from hearing the facts about the “footprint” in the central coast’s communities of service providers and the regional center – the number of staff employed, the individuals and families able to work, go to school, and pay rent in the community because of services provided. Join me in advocating for our system in whatever ways that you can. There are many ways to help. Learn about opportunities to communicate with legislators at www.ARCA.org. The ARCA site has tools to help advocate for a 10% increase in funding for regional centers and a 10% increase for service providers. We have successfully weathered budget cuts, inadequate funding and changes to the system for over 45 years since the Lanterman Act became part of our Welfare and Institutions Code in 1969. It is helpful to remind ourselves that despite whatever governmental changes occur, however our state budget must flex with many complicated issues, we are committed to ensure that the people we serve have quality lives. It just takes all of us working together to ensure it happens!
Bring Your Skills and Ideas to the TCADD Board Contributing to the well being of persons served by TCRC is a rewarding experience. Many TCADD board members have served their terms and seats for these valued roles are opening. Family members are encouraged to apply, especially those with management, public relations, education or other non-profit experience. Please email BoardSecretary@tri-counties.org for more information. Or visit our website at www.tri-counties.org, select TCADD Board of Directors, then Membership / Role. We need your help to improve quality of life and protect the rights of individuals with developmental disabilities. Editor & Design: Heather Wennergren | Writing Team: Heather Wennergren & Nancy Black Translation: Carlos Cerecedo and various translators | Photography: Isaac Hernandez and various photographers
Tri-Counties Regional Center Headquarters 520 E. Montecito Street Santa Barbara, CA 93103 805.962.7881 Tel 800.322.6994 Toll-Free www.tri-counties.org Tri-Counties Association for the Developmentally Disabled Inc. (TCADD) Board of Directors Rachel Huff President
Diane Figueroa Vice President
Michael Kaszycki Secretary
Sharon Francis VAC Representative Tim Farrar, PAC Representative Chris Correa Shirley Dove Mani Gaur Donna Moore Shanti Nadiminti Susan Rasmussen Robin Rosso Ryan Wilkinson
2015 Upcoming Board Meetings June 6..................10:00 am (Ven) July 11................... 10:00 am (SV) Sept 11....................6:00 pm (SB) Oct 3.....................10:00 am (SLO) Nov 6.........................6:00 pm (SB) 2015 Upcoming Town Hall Meetings July 15........................ Santa Maria Sept 23................................ Oxnard Oct 14......................... Atascadero