A Publication of Tri-Counties Regional Center | Fall 2017
Cover Story 01 The Art of Advocacy Featured Articles 02 Ten Years and Counting... A Happy, Dedicated Employee 05 Exciting Changes to Respite 05 Special Olympics Expands to Santa Ynez Valley! 06 Little Free Libraries - Good Things Come in Small Packages 07 It's Never Too Late to Find Community 14 The Journey of Cannabidiol 15 My Life Inside
The Art of Advocacy
Artists with developmental disabilities paint a powerful picture By Debra Muzikar Excerpted from the "Autism File" publication with permission from author
Recurring Topics 02 From the Executive Director 08 Calendar of Events 16 Greetings from the President "Consumer" by Gabby Ledesma
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.
This summer the extraordinary art work of Californians with developmental disabilities, many on the autism spectrum, was on display in the Maria Shriver Room at the California Museum in Sacramento. The exhibit, titled TBD – To Be Developmentally Disabled – Arts and Advocacy, was the first of its kind at the museum. In a unique collaboration, Sacramento service provider Choices Person Centered Services partnered with the California Disability Community Action Network (CDCAN), Claraty Art Studio and the Art of Autism to curate the exhibit. “Often a person with a disability is not even seen as a person except as a recipient, a beneficiary, a consumer, a client, a caseload number, or someone who simply and constantly needs help … not a person who needs and wants a life like anyone else – love, happiness, and joy” ~ Marty Omoto, CDCAN
The Lanterman Developmental Disabilities Act It’s fitting that the exhibit, centered in Sacramento, coincides with the 50th anniversary year celebrations marking the establishment of the community-based continued on page 4 Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D. Governor Brown signed the FY 2017-2018 California State Budget on June 27, 2017 (AB 97), along with numerous Budget Trailer Bills including AB 107 - the Budget Trailer Bill for developmental services that was sent to him by the Legislature on June 15, 2017. The approved FY 2017-2018 Developmental Services budget and related Trailer Bill provides for the following significant adjustments: • The Budget provides $6.4 billion to the Community based Developmental Disabilities Services System, an increase of 4.1% over FY 2016-2017. • The Budget anticipates the Developmental Services System will serve around 318,000 people in FY 2017-2018. • $7.5 million in General Fund dollars will be provided for expanded Safety Net services for individuals with developmental disabilities, including the expansion of mobile acute crisis teams, intensive support services, and the development of transition support services and acute crisis homes. • $5.6 million in General Fund dollars will be provided to remove the limit, currently 90 hours per quarter, for in-home respite services, effective January 1, 2018. • An increase of $47.9 million in General Fund dollars will be provided to reflect the impact on service providers for the state minimum wage. Current information and resources related to the budget is posted on the "Budget Watch" page of the TCRC website. Governor Brown had until midnight October 15, 2017 to sign or veto bills passed by the Legislature in the final days of the 2017 session. A third option was to allow bills to become law without his signature. The Governor signed 859 bills (84% of the bills sent to him) including several bills impacting people with developmental disabilities and/or the developmental disabilities services system: • SB 2 – Building Homes and Jobs Act SB 2, which took effect on September 29, 2017, adds a $75 fee on real estate 2 | TriLine | Fall 2017
documents, to be used for affordable housing. Total fees are capped at $225 and do not apply to real estate sales (e.g. buying or selling a house or commercial property). The bill requires that revenues from this fee be sent quarterly to the State Controller for deposit in the Building Homes and Jobs Fund. It is estimated that the bill will generate roughly $250 million each year and create 57,000 jobs over five years. Half of the revenues generated between January and December, 2018 will go towards reducing homelessness throughout California and half will go to local governments to update community housing plans in order to improve neighborhood quality of life and spur affordable housing growth. After the first year, 70 percent of the revenue will go directly to communities to create affordable housing and 30 percent will fund existing state housing programs. • SB 3 (Beall) – Veteran and Affordable Housing Bond Act of 2018 SB 3 would enact the Veterans and Affordable Housing Bond Act of 2018, if adopted as a ballot measure in the November 2018 general election by California voters. The bill would authorize the issuance of $4 billion in bonds, $1 billion of which would be used to provide additional funding for various housing programs for veterans and $3 billion would be used to finance various existing affordable housing programs throughout the state to include multifamily housing. Various housing programs fund the construction, rehabilitation, and preservation of housing for those at risk, those currently homeless, and low-income earners. They will also create home ownership opportunities for low and moderate income earners. It is estimated this bill will result in the creation of 147,000 jobs, more than $9 billion in labor income, $24.5 billion in economic activity and $1.1 billion in additional local and state taxes & fee revenue. • AB 959 (Holden) – DDS List of Services AB 959 requires the State Department of Developmental Services (DDS) to establish and maintain a page on its internet
website that includes a list and description of services purchased or provided to persons served by regional centers. Regional center websites would also have a required link to that page on the DDS website. The bill will also require regional centers to provide information in a manner that is culturally and linguistically appropriate. Preparations for the implementation of the Self-Determination Program continue. Self-Determination services will be in place after federal funding has been approved for the Self-Determination Plan Waiver Application. Once this federal funding is secured, 2500 people statewide will be allowed to enroll in the Self-Determination Program. Participants will be selected on a random basis by DDS according to the demographics of age, gender, ethnicity and diagnosis. Check the TCRC and DDS web sites for updates at www.tri-counties. org or www.dds.ca.gov. The 10th Annual California Gathering for Person Centered Practices took place this October in Camarillo. This anniversary event hosted by TCRC attracted over 200 attendees from across the state. This year, an extra day of learning was provided for regional centers interested in incorporating person centered practices in their work. Many attendees left the event with new ideas to implement person centered changes in their communities. I’d like to thank you all - - your consistent advocacy efforts have resulted in an increase in funding that aligns with the continuing growth of the population of individuals receiving services. We will carefully monitor the implementation of new legislation this year and keep a close eye on the approval process for the Self-Determination Program by the federal government. As we move into the winter holiday season, I’m grateful for the many exemplary individuals I have the pleasure of working with on the TCADD Board of Directors, TCRC staff,our service provider community and most importantly the persons and families we serve.
Ten Years and Counting... A Happy, Dedicated Employee by Steven Crusinberry
disabilities, and Sandra is definitely part of the team.” Sandra has many varied tasks in her job, including filing, straightening up around the office and answering the telephone. What is her favorite part of her job? “Everything!” said Sandra. “I like doing it all, but my favorite is the birthday cards. ” Each week Sandra is given a list of upcoming birthdays among the more than 400 employees of IECP and Sandra sends them a card in the mail.
Sandra Ramirez
There is a charming little office tucked away upstairs above a busy café, immediately adjacent to Ventura harbor. It’s an idyllic location, just steps from the ocean and harbor with a classic, funky California beach atmosphere. This little office is home to Inclusive Education & Community Partnership (IECP) an organization dedicated to helping people with developmental disabilities, and one of their most dedicated employees is Sandra Ramirez. Sandra herself has a developmental disability but that hasn’t slowed her down and she has been working for IECP for over ten years. IECP was founded in 2002. They provide educational and behavioral services in inclusive settings. IECP is deeply committed to including individuals with developmental disabilities into all aspects of community life. Rick Clemens, founder of IECP, first hired Sandra nearly eleven years ago for job training. More than a decade later, Sandra has continued to serve as an employee at the agency. “I like to hire hard working people with a positive attitude” said Rick. “Our overriding ideal is that people with disabilities should have the same opportunities as people without
Sandra also has a support team from ARC of Ventura County. Riki Tamahana is her case manager and Adriana Manzer is her job coach. Adriana checks in with Sandra once a week at work to see how she is doing. Sandra is currently working part time, three days a week. “She would actually like to work more hours” said Riki, "but it negatively impacts her Social Security benefits.” This is a common problem for people with disabilities. They have to strike a balance between employment and Social Security Income as well as consider housing subsidies in order to survive financially. “It is unfortunate” said Riki “it really takes away their independence.” About 80% of the employed people whom ARC supports would work full time, if they could, according to Riki and Adriana, but the loss of benefits is far too detrimental. “That’s one of our main struggles, but we try to make it work” said Riki. Many of us deeply identify with our jobs. We value our contribution and benefit
from the skills that we learn. Having a job provides a sense of belonging. It's an opportunity to make new friends and enjoy the freedom that comes with earning our own money. That's what Riki and Adriana work so hard to do, to help provide those opportunities to people who are able to work. Sandra’s successful, integrated employment was important not just to Sandra, but also to her parents. Sandra lives at home with her Mom and Dad and they are very proud of their daughter for being gainfully employed, but also relieved. Parents can’t be there for their children forever and Sandra’s parents found it very comforting that she could be independent and earn her own money. In addition to working, Sandra takes time to enjoy going to the movies, shopping and learning to cook with her Mom. She looks forward to going to work every day and enjoys the company of her fellow employees. When Sandra first thought about getting a job she was very nervous. She had the same concerns that we all have when embarking on a new path: concerns about not knowing any of the people and concerns about not fitting in with the team. But now, after all these years, she is very happy and comfortable at her job. Although looking for work and applying for jobs may seem a bit frightening for people who may be differently abled, Sandra’s advice is “Just go out and try it!”
Sandra with her ARC support team- Adriana Manzer & Riki Tamahana
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The Art of Advocacy ...continued from cover by Debra Muzikar
system of services for people with developmental disabilities in California that resulted in the landmark 1969 legislation known as the Lanterman Developmental Disabilities Services Act (AB 846). This civil rights legislation states that people with developmental disabilities and their families have a right to receive the services and supports they need to live a more independent and normal life. Curation Process As part of the curation process, the unique story of each artist was shared. These stories highlighted the diversity of the population. The artists took pride in their ethnicity, religion, interests, family and friends which they conveyed through their art. Other pieces were darker, depicting run-ins with law enforcement, the isolation of institutionalization, racism, and the unmanifested desire to have physical relationships. Seeing Beyond the Label The organizers hope to challenge assumptions about disabilities. CDCAN's Marty Omoto describes a goal of the exhibit "to open some of the doors and windows in a person’s life and connect that to the person viewing the art work … to invoke some thought or emotion to cause the person to smile, to relate, to ponder, to be sad or reflective...If the art is compelling enough for the viewer, it can help challenge previous assumptions that a person may have had about a person with disabilities.”
The artwork on the cover, Gaby Ledesma's "Consumer,” was inspired by Andy Warhol’s 1962 Campbell Soup Can piece. "Consumer examines the language that we use to describe, categorize, label, and measure people with developmental disabilities using familiar imagery and common language, aspiring to combine them in such a way as to cause viewers to consider or reconsider each element – each can, each label, and their own experience with these words in a new light.” (Art work courtesy of Claraty Arts). Art as Advocacy Marty Omoto speaks of art being no different than attending a rally, writing a letter or article on disability rights, or performing music.
“Art is advocacy. Not that it can be…. not that it could be. But that it is. Not every artist and not every art piece rises to the point of being compelling in that way – just as not every person who speaks at every public hearing or rally or every writer and every article, poem, essay or letter they write, necessarily rises to that point. But it does when the artist and the art piece are authentic in expressing their point of view, a voice and experience.” ~ Marty Omoto, CDCAN On display is a portrait of Governor Brown painted by Jeremy Sicile-Kira, a
The Colors of a Great Leader, Our Governor Brown “Truly greatly I had a dream about Governor Brown. Greatly there was blue surrounding him for his knowledge for the state and the needs of its people. Truly Governor Brown will do his best with what he can to make California a better state. His stance on how he will defend everybody, every man, every woman, and every child is what is important in a governor. Greatly there is lots of purple for his leadership roles. Red is present for the love that Governor Brown has put towards the lives that matter. Green is truly present for the calmness Governor 4 | TriLine | Fall 2017
non-speaking artist who communicates through his art and a letterboard. Jeremy sees people’s auras or colors, paints them in portraits and then interprets them in words. Below is Jeremy's statement about this portrait. Standards of Excellence "A hope for the exhibit is that people viewing it will realize that artists with disabilities can reach the standards of quality and excellence applied to anyone else. When a person is unchained from stereotypes and old assumptions – or physically unchained from an institution – anything is possible,” Marty says. Participating California artists (who were curated by the Art of Autism) are Joel Anderson, Maria Arroyo, Mia Mantegna, Kevin Mount, Syance Wilson, Ali Shahrouzi, Kristina Woodruff, Max LaZebnik, Jeremy Sicile-Kira, Jeff Working, Jason Cantu and Kevin Hosseini. Many other artists were curated from other organizations. For more information about the exhibits and the artists visit these websites: California Museum www.californiamuseum.org/art-advocacy Choices Person Centered Services www.cts-choices.org California Disability Community Action Network – www.cdcan.us The Art of Autism – www.artautism.com Claraty Arts – www.claratyarts.com By Jeremy Sicile-Kira
Brown feels when he makes a significant difference. Just, kindly magenta is present for the love of his wife, Anne. They work well together and he feels more comfortable with her by his side shown by calm yellow-green. Greatly white is present for the great chance at a brighter future for California and our country. Nicely there is orange for the happiness he felt when he got another chance to be Governor and for all his accomplishments now and to come. Frankly there is gold and silver shining down from their lost pet dog, Sutter.”
Exciting Changes to Respite Good changes on the way
We want to let you know about an important change in the law. Currently, regional centers cannot purchase more than 90 hours per quarter of in-home respite and cannot purchase more than 21 days of out-of-home respite for a family, unless an exemption is granted. Effective January 1, 2018, these limits on the purchase of respite services will no longer apply. As always, the planning team makes the decisions about respite services as a part of the Individual Program Plan process. If you have questions, or you are interested in respite services, please contact your service coordinator for more information. Recent Respite Postcard
Special Olympics Expands to Santa Ynez Valley! by Steven Crusinberry
For those who enjoy sports and friendly competition, there is some exciting news coming for folks in the Santa Ynez Valley. Special Olympics Southern California will begin offering programming in Santa Ynez and Buellton in the spring of 2018. This is a partnership and collaboration between Special Olympics, the City of Buellton and the City of Solvang Parks and Recreation Department. Special Olympics Southern California offers activities to individuals with intellectual disabilities in sports such as flag football, bocce ball, swimming, soccer, volleyball, and golf. The sports rotate seasonally with tournaments held several times a year. There are plans to include cheerleading as well as a wellness program that focuses on healthy eating and exercise habits. Basketball is one of the spring sports. Once the practices have concluded in the Santa Ynez Valley, the teams will go to the big Spring Tournament usually held at the University of California Santa Barbara (UCSB) Thunderdome. Last year’s spring basketball tournament at UCSB included over 400 athletes from Southern California. All Special Olympic programs are free of charge to participants and a great way to get some exercise and meet new friends.
The players and teams may go on to compete County-wide, State-wide or even internationally at the World Games. Special Olympics pays for the athletes' travel expenses. The Santa Barbara region of Special Olympics currently serves over 1200 children and adults. The program is open to all people with intellectual disabilities from age 8 years and up. Most of the players are adults, but there is no upper age limit. The oldest Santa Barbara participant is 72. There are over 500 volunteers assisting with coaching and fundraising events throughout the year.
Special Olympics, the Wellness program or volunteering in Santa Ynez is invited to an Informational Session. Date: Wednesday, December 13, 2017 Time: 5pm-6pm Location: Buellton Recreation Center Room A301, 2nd St., Buellton, CA 93247
Special Olympics has recruited a head coach, David Ibsen, for the Santa Ynez Valley basketball team. There are opportunities for assistant coaches and volunteers are needed. If you are interested in signing up to play basketball, visit the Special Olympics Santa Barbara website at www. sosc.org/sb for more information. If you would like to volunteer to become a coach, contact Tim Ballaret at 805-8841516 x 104 or tballaret@sosc.org. If you are interested in volunteering to cheer this new team on during practice or games, contact Jerrie Domingos at 805-688-5041. Anyone interested in participating in
Young athletes enjoy a game
Fall 2017 | TriLine | 5
Little Free Libraries - Good Things Come in Small Packages by Steven Crusinberry
Providing access to books is just a small part of a much broader ideal of the Little Free Library project. In addition to fostering a love of literature by providing access to books, the libraries are also a source of opportunities. They are opportunities to give, create, and inform. But mostly they are about community. Community involvement is the cornerstone of the Little Free Library movement. The libraries are funded, stocked and maintained organically, on a grassroots level. xxx
Completed library, full of books
Access to a visit to the library for children or adults is an important community resource. Books just became more accessible in some communities along the coast. Little Free Libraries is an international program devoted to providing access to books for adults and children on a very local level. The program places small decorated library boxes in neighborhoods and playgrounds. People are free to borrow books or donate books to the box on their own, it is entirely community driven. There are Little Free Libraries in over 80 countries with millions of books exchanged every year. Andrea Schacht, Services and Supports manager for the Santa Maria office at TCRC was really inspired by the concept behind the little libraries. “I started thinking about how TCRC could join this community," said Andrea, "especially for our Spanish speaking families and in areas with perhaps fewer resources.” Andrea invited various TCRC partner agencies together to discuss the possibilities of constructing Little Free Libraries in communities that are served by TCRC. “We had the idea to take the Little Free Library concept and have people we support build the little libraries and then decorate and paint them for placement in the community. “ 6 | TriLine | Fall 2017
One agency that was instrumental in helping Andrea launch the library was the Housing Authority. “Since many of the individuals we serve are low income, we partner with the Housing Authority and we decided to see if they would be interested in having the Little Libraries at their housing sites. To our amazement, they were.” Once they had access to potential building sites, Andrea enlisted the help of TCRC partners, UCP Work Inc. and Novelles
Local children painting hand prints
Developmental Services, to help build and paint the libraries. The work was entirely done by individuals who are supported by TCRC. The city of Guadalupe was selected as the site for the first library. “Guadalupe is a small agricultural community, somewhat isolated, with few resources for children and families. So this became our goal for the location of the first library” said Andrea. This was when the community really came together. Andrea met with the local families and explained the project to them. “They were very excited about the idea and anxious to help. We emphasized that this was about individuals we support, giving to others and about providing an
educational, fun experience for children and involving the community.” Meanwhile, people who had heard about the project began donating books. One family member from TCRC brought two trucks full of books. Staff members from many different agencies contributed as well. The people whom TCRC serves at Novelles inspected the books for damage and put a Little Free Library label in each book. According to Andrea, “the concept of the Little Library is that you can keep a book or return it and we wanted the children to be able to keep a book if they wanted. The crews at Novelles were busy!” The grand opening was held at a new playground in Guadalupe in August. It was quite a celebration. There was music, prizes, a hula hoop contest and many, many books to give out. A police officer from the Guadalupe Police Dept. read to the children- and even tried Hula Hooping! So far, the Little Free Library has been a grand success with dozens of books being traded every week. There are plans for as many as eleven more libraries with each library being sponsored by a different agency serving people with developmental disabilities. “It’s amazing what people coming together can do with practically no money and only the goal of doing for others” exclaimed Andrea. “When people in Guadalupe began hearing others talk about the little libraries, they were so appreciative that this was done for their community... that someone actually cared.”
Super hero volunteer George
It's Never Too Late to Find Community by Patricia Forgey
and I traveled to Corona regularly where Tilla then lived with our father; I wanted to make sure that she was okay.” When their father died, Tilla confessed, “I was kinda worried. I was crying because I didn’t know who would take care of me.”
“I want a hug!”
Debra & Tilla
…Of course, I said “yes!”! My first interaction with Tilla told me so much about her spirit, her nature - about whom she is and the person she has become. The support and advocacy of her sister and membership in the Friendship Center, being part of the Center’s activities and finding many friends there, has been life changing for Tilla. As Debra Ermac, Tilla’s sister, arrives in the library at Friendship Center, she is greeted by Tilla’s brilliant smile. The two sisters have renewed their life-long bond since Tilla moved to Santa Barbara twelve years ago. Tilla was born in 1950, when intervention services for children with developmental disabilities were rarely available. Children with developmental challenges were misunderstood. Physicians routinely advised families to place their children in institutional care settings. Tilla’s early memories resonate with the difficulties of her childhood. She remembered poignantly, “I couldn’t walk and I couldn’t talk.” Tilla grew up without intervention services. And, Debra, recalls, “We were all clueless.” As an adult, Tilla remained in the background of the family. She qualified for Supplemental Security Income (SSI) payments in adulthood, but did not have access to the funds. Tilla’s mother managed these resources with the explanation, “My daughter does not know how to count money." Debra shares that, “We’ve always been very close. When our mom died, my husband
When Debra and her husband moved Tilla to Santa Barbara to live with them, the work began to support Tilla to say the words she was thinking and make her choices known. Debra learned more about this sister who had been silent and unempowered in her life. “We would ask her, ‘what would you like for dinner?’ She would never ask us or tell us what she wanted.” This is how we were raised, to be silent. Tilla was always told what to do and she just followed along. Debra described her own form of intervention for her sister. “We worked really hard. It took years for Tilla to understand that she could speak up for herself. She needed to say, ‘I don’t want chocolate - I want vanilla.’” “Well, you did a good job with that," notes Luciana Mitzkun, Director of Family Services. , "I'm surprised that this is the same Tilla whom I now know!”
addition to the activities of art, music and socialization at Friendship Center, Tilla enjoys daily affirmations and listens to meditative music. In 2014, Tilla moved to Comforts of Home, a licensed home in Goleta. Debra knew that Tilla needed a community life. She brought Tilla to Friendship Center’s Montecito location for a tour. With one visit, that included the spacious open-air courtyard surrounded by palatial trees, the rooms for art, tai chi, and other activities along with the dining room decorated with members’ art - she was sold! During her annual IPP meeting with her Service Coordinator, Tilla requested, “I want to say something - I want to go to Friendship Center.” This delightful woman, now speaking her mind, making choices, and being there for others, has made her way to a new life, from one of confinement, absent communication skills and a deficit for the joy of life. Her sister’s concern, advocacy and support, and the lively and creative environment of the Friendship Center, pulled Tilla into her full life with every day now being a good day.
Tilla says to Debra, “I’m very thankful that you took me in” and … (now) I would like to learn to count money! As Debra and Luciana describe the Tilla who is a member at Friendship Center, a woman with a sense of humor, communication and mobility skills, and a heart for old and new friends, her sister relates, “I’m so proud of you; my heart just rolls over!” says Debra. She recalls that, “It took awhile for her to learn about appropriate words; she would come across as impolite. We would practice at home all of the time for table etiquette and conversation with others.” As Tilla spoke more, her speech became clearer and Debra experienced the gift of truly knowing her sister. “I enjoy her sense of humor," adds Debra, "She tells me that I don’t have one!” Tilla’s days are filled with her hospitality as she greets new arrivals at Friendship Center and assists in the dining room. In
Debra encourages Tilla
Friendship Center, a licensed, non-profit adult day services program, serves older adults with developmental disabilities as well as those experiencing the effects of dementia. Locations in Goleta and Montecito provide opportunities to socialize and enjoy innovative programs to maintain quality of life along with Healthy Aging Courses. Learn more at www.friendshipcentersb.org Fall 2017 | 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 (805) 347-2775 Santa Barbara Office (877) 414-6227 or (805) 683-2145 Lompoc Office (805) 453-7739 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. Parent-to-Parent ~ and family support, parent-professional collaboration, resource meetings and workshops, information & referral, transition, future planning, and much more county wide! For information and support group info contact: Santa Barbara ~ Jennifer Griffin at 805-683-2145 jgriffin@alphasb.org Santa Maria ~ Norma Puga at 805-347-2775 npuga@alphasb.org Lompoc ~ Mariana Murillo at 805-453-7739 mmurillo@alphasb.org
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 breaking barriers between able bodied individuals and those with disabilities. $3 fee, $1 refreshments. DJ & Live Sound, Chris Benedict (805) 729-1512 or djofability@gmail.com 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 CITY OF SB PARKS & RECREATION DEPT Check out what they have to offer. Contact: Adapted Programs 805.564.5421. 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.
Early Start Playgroups ~ Discussion, networking and crafts. Location varies. Contact: Jennifer Griffin 683-2145
AUTISM SOCIETY OF AMERICA SANTA BARBARA CHAPTER (ASASB) Contact: Marcia or Sandy at 805.560.3762 or info@asasb.org, www.asasb.org.
Resource Libraries ~ offer over 2000 titles on developmental and other disabilities. Located at TCRC offices in Santa Maria and Santa Barbara. Mobile library services are available. Call for hours or assistance. Santa Maria 347-2775 Santa Barbara 957-9272
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.
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.
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.
Teen Extreme Social Club~Meets weekly for outings & activities. 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. 8 | TriLine | Fall 2017
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.
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) 569-8999, ext. 82552 or http://www.sbch.org SPECIAL OLYMPICS SOUTHERN CALIFORNIA Santa Barbara County Region offers yearround sports programs and competitions for 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 & softball. 805-884-1516 DOWN SYNDROME ASSOCIATION OF SANTA BARBARA COUNTY Contact Melissa Fitch at Melissa@dsasbc. org or (805) 886.4411, www.DSASBC.org 9TH ANNUAL DSASBC BUDDY WALK AND FESTIVAL Saturday, June 16, 2018, Chase Palm Park Great Meadow, Santa Barbara – Volunteer, Fundraise, Sponsor. Contact Melissa at (805) 886-4411 or Melissa@dsasbc.org 9TH ANNUAL HOE DOWN DINNER DANCE PARTY - OCTOBER 2018 Santa Barbara Carriage Museum - Celebrate Down Syndrome Awareness Month. Contact melissa@dsasbc.org for details DSASBC VALENTINE’S DAY DINNER DANCE PARTY Goleta Valley Community Center February 16, 2018 5-9pm. Contact melissa@dsasbc. org “321 PLAYHOUSE” FAMILY PLAY GROUP For families who have children birth – 5 with Down syndrome. Meets monthly at various locations to help families get connected and stay connected. Siblings welcome! Visit www.DSASBC.org for updates and schedule SUMMER CAMP AND ACTIVITY GUIDE Available online at www.sbSNAP.org CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE)
Nov 18, 2017 - Feb 3 2018. 12:15pm – SB or Goleta Location to be determined. Invite your friends and family to come to out for our Fall Flag Football and Cheer programs. This popular non-contact sport is adapted for children and teens with special needs. Boys and Girls ages 5 - 18 with physical, developmental and/or intellectual challenges will play their final game in our Super Bowl Practice and Family and Community Super Bowl on Saturdays at local school sports fields. Players introduced by sports announcer as they run onto field through a banner and Tunnel of Cheer leaders Half Time performance by our Fall Cheer team After Game Awards and Party for our players. Please come out and Support our players - you will be blessed! Details - Call Laura Herrera at 805/899-3475 Wheelchair users included! Flag Football and CheerLeading Registration forms at www.GoChallengers.org; BASKETBALL SKILLS CLINIC AT PAGE YOUTH CENTER Skills, Drills and Thrills For Kids and Teens with special needs. Beginner and Intermediate skill level groups, Inside and Outside courts. Tuesdays, 3:45 - 5 pm Volunteer buddy support, indoor and outdoor courts. Six Tuesdays every Fall and Spring at the Page Youth Center, 4540 Hollister Avenue, SB PEER BUDDIES Your child will have the opportunity to learn essential social skills from their very own Peer Buddy while having a blast participating in fun activities! Each week, our group will have a different “theme” (theater, sports, arts, cooking). Sign up for individual sessions, groups and camps. Contact (805) 620-PEER (7337) www.PeerBuddies.com ARF READ TO A DOG Tuesday, 3:30pm SB Public Library Saturday, 10-11 am Carpinteria Library Curl up and read to a four-legged friend! Children in grades K-6 are welcome to drop in to the Central Library for a fun, 20-minute reading session with an ARF! therapy dog! Space is available on a firstcome, first-serve basis... Please come early and sign up at the Children’s Desk. All children ages 8 and younger must be accompanied by a parent or guardian. ARF!’s
Santa Barbara County library program is free. www.allforanimals.org, (805) 682-3160 CONNECTIONS AT FRIENDSHIP CENTER Weekly workshops provide brain training designed to help people retain cognitive skills, including memory, logic, language, and math skills. They include fun and challenging games, puzzles, and memory enhancement exercises. Offered in Montecito on Mondays 10 am2pm and in Goleta on Thursdays 9:30 am - 1:30 pm. For more information call (805) 969-0859. CIP: NONVIOLENT CRISIS INTERVENTION TRAINING Time: August 23, 2017 to March 15, 2018 Location: time, dates vary from Goleta/ Santa Barbara to Santa Maria Organized By: Santa Barbara SELPA A program focused on crisis prevention and intervention with a core philosophy of providing for the Care, Welfare, Safety, and Security of everyone involved in a crisis situation. Participants will learn skills to safely respond to various levels of risk behavior while balancing the responsibilities of care. INCLUSIVE YOGA FOR ALL ABILITIES Time: September 14, 2017 to December 6, 2017 Location: time varies with periods of classes Address: 100 E. Carrillo Organized By: City of Santa Barbara Parks and Recreation. Phone: contact adapted programs @ 805-564-5421
must be made and paid for in advance. Cost $20 per person. Note: This event is for adults so, unless the attendee needs one-on-one assistance, please drop him/her off at the door and pick up by 6:00 p.m.
SANTA BARBARA COUNTY
2017 STORYBOOK HOLIDAY LIGHTS TOUR TROLLEY RIDE Children and Teens with Special Needs and their families are invited to board our "Storybook Holiday Lights Tour" for an evening including costumed storybook characters, caroling with costumed cast, hot cocoa, and surprises. Board our Private Rented Trolleys at "Visitor Information Center" on Garden Street for a magical evening of oohs, aahhs and wonder! Volunteers play costumed roles and bring the storybook adventure characters to life! Hot Cocoa and Holiday Snacks served on board trolley. Special gift and holiday photo for each child following trolley ride. Trolley Experiences to choose from: Polar Express: storybook/film comes to life as characters engage in song and costume throughout the evening. Christmas Wonder: faith based story of the First Christmas and songs bring true meaning to this magical season! Frosty & Friends (Polar Express II): Collection of favorite holiday stories and songs including the Polar Express. Night Before Christmas, Rudolph, Away in the Manger, Little Drummer Boy and more!
MOVIE MATTERS Time: September 23, 2017 to March 19, 2018 Location: SBCC. Time varies. Movies and discussion on special needs, current issues and new awareness. Visit sbsnap.org for further details. DSALA'S HOLIDAY DANCE Saturday, December 2, 2017 3:00 pm-6:00 pm Saint Stephen's Lutheran Church 15950 Chatsworth St. Granada Hills, CA 91344 The season of celebration is here, so come on over for a toast and a cheer. Dress your best and come celebrate with the rest. There will be a light dinner, punch, and cake. See old friends, make some new ones and have a great time. You can bring a friend (age 18 or older). Please RSVP by November 29th at noon. Reservations Fall 2017 | TriLine | 9
VENTURA COUNTY
Ventura County 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 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 our “What’s Happening at Rainbow?” email group. ACTIVITIES SOCIAL TIME FOR ADULTS RECEIVING SERVICES FROM TCRC (BILINGUAL) Meets 2nd Sunday of the month 11am – 12:30pm at Teague Park in Santa Paula. Come, bring a friend or just come meet new people, for conversation, playing games or for refreshments and some fresh air. AUTISM SUPPORT AUTISM PARENT SUPPORT GROUP (ENGLISH) NEW MEETING DAY - Meets 2nd Wednesday 7 - 8:30pm in Oxnard. Location varies, please call for details. Parents meet to share the experiences they’ve had with their children with Autism as well as share and learn about resources. AUTISMO SUPPORT GROUP (SPANISH) Meets 4th Thursday of the month 7pm 10 | TriLine | Fall 2017
8:30pm in Oxnard. Location varies, please call for details. Parents meet to share their experiences, resources and information. DOWN SYNDROME SUPPORT DOWN SYNDROME SUPPORT GROUP (SPANISH) Meets first Tuesday of the month 6:30pm – 8pm in Oxnard. Families have open discussions on issues related to raising children with Down syndrome. SUPPORT FOR ALL SPECIAL NEEDS SIMI FRIDAY NIGHT GROUP (ENGLISH) Meets 1st Friday of the month 7pm – 8:30pm at TCRC in Simi. Join other parents and caregivers. Share the joys, concerns, and sometimes unusual humor that come from raising a kid with special needs. Parents are an amazing source for information, strategies, and resources. COFFEE & CONVERSATION (ENGLISH) Meetings are at a different location in the county every month. Join us for a cup of coffee, learn about our resources, and talk about issues. *Call to confirm date, time and location at 805-288-2544 or E-mail: rainbow@tri-counties.org SANTA PAULA SUPPORT GROUP (SPANISH) Meets 1st Monday of the month 5:30pm - 7:00pm at Heritage Valley – ARC in Santa Paula. Families of adults served by TCRC meet to share the experiences and resources. SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets first Tuesday of the month 6:30 PM – 8:00PM in Oxnard. Parents meet to share the experiences and resources. SANTA CLARA SUPPORT GROUP (SPANISH) Meets 3rd Tuesday of the month 11:30 AM – 1:00 PM at Neighborhoods For Learning (NFL) in Fillmore. Parents of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30 AM – 10:00 AM at Teague Park in Santa Paula. Families of young children with special needs meet to share the experiences
they’ve had with their children with special needs and learn about resources SIMI SPECIAL PARENTS NETWORK (ENGLISH) Meets 3rd Tuesday of the month 9:30 AM – 11:00 PM in Simi Valley. Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs. INFORMATIONAL “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. For persons receiving services from TCRC. Individual Appointments can be scheduled upon request. THE IEP BASICS (ENGLISH OR SPANISH) 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. Individual Appointments can be scheduled upon request. 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 IS NEXT AFTER EARLY START A time of excitement, transition, and new challenges! Are you wondering how it all works? Are you confused? Want to know how to make a plan? Let’s have a cup of coffee and talk about this. This is a good opportunity to talk with Early Start Managers, Rainbow staff and other parents who are going through transition! Call Rainbow Connection for more information.
OTHER COMMUNITY SUPPORT GROUPS Contact the following groups directly. ACTIVITIES THE AKTION CLUB OF SAN BUENAVENTURA The Aktion Club of San Buenaventura is a community service club sponsored by the Kiwanis Club of Ventura and The Arc. Club membership offers opportunities to form friendships and develop leadership skills through volunteer work and projects. For further information call Patty Schulz at 805-218-7807 or http://www.cnhaktion.org/ about.html SIMI AKTION CLUB - SIMI VALLEY Meets 1st and 3rd Tuesday of the month at 5:30 PM at The ARC at 5143 Cochran St, Simi Valley. Sponsored by the Kiwanis and The Arc. Club membership offers opportunities to form friendships and develop leadership skills through volunteer work and projects. For more information call Sandra Blackwell (805) 583-2610 or sandba@aol.com BRANDON’S BUDDIES A free play date for children of all abilities. 1st Saturday of the month 11:00 AM – 1:00 PM, at Brandon’s Village, 25801 Thousand Oaks Blvd. in Calabasas. Go to www.kenproject.com to view calendar. FUN CLUB THROUGH THE CITY OF OXNARD SPECIAL POPULATIONS PROGRAM This program is designed to provide social and recreational opportunities for persons of all ages with disabilities. Activities offered include: Challenger Sports, Fun Club,Day at the Park, Arts & Jewelry Classes, Swim Lessons, Community Gardening and Braille Institute. For information call Maria Sandoval 805-385-8019/ or Direct Lin- 805 385-8020. 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 805-381-2739 or http://www.crpd.org/programs/therapeuticrecreation/default.asp FRIENDSHIP CIRCLE Designed to foster relationships between
Ventura County
community teenagers and children giving them a chance to develop social skills and the opportunity to experience a diverse array of 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 818-8652233 www.FriendshipCircleCa.org 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 program not only provides people with intellectual disabilities with physical fitness and athletic competition, but also social interaction and community involvement. For information 805-650-7717 or http://www.sosc.org/ventura CENTER4SPECIALNEEDS Offers various types of supports for families, that have children ages 2-16 with developmental disabilities, Organizes Mom’s & Dad’s Night Out events and has a huge calendar of support groups on their website at http://center4specialneeds.org RUNNING GROUP - NEWBURY PARK For all ages, exercise at your pace! Meets every Wednesday evening at 6:30 PM at Peppertree Park near restrooms, please wear a blue shirt. For further information please contact Brian E. Thompson at brian_e_thompson@hotmail.com ASL STORYTIME Meets every 3rd Friday of the month at Barnes & Noble (4820 Telephone Rd, Ventura) from 7:00 PM to 8:00 PM. Bring your Deaf, Hard of Hearing, and Hearing children to watch a Deaf Storyteller sign stories in American Sign Language! AUTISM SUPPORT AUTISM SOCIETY VENTURA COUNTY (ASVC) Supporting individuals with Autism and their families with resources and referrals in the Ventura County area of California. A chapter of the Autism Society of America. To speak with a parent mentor on the phone call 805-496-1632. For more information http://www.autismventura.org/ events/
VENTURA COUNTY AUTISM TALK ON FACEBOOK Both for any parent or professional or interested community member in the Ventura County or nearby area. Ventura County Autism Talk on Yahoo Groups https://groups.yahoo.com/neo/groups/ venturacountyautismtalk/info Ventura County Autism Talk on Facebook https://www.facebook.com/ groups/1636384583315658/
VENTURA COUNTY
FETAL ALCOHOL SUPPORT SOUTHERN CALIFORNIA FASD INFORMATION & SUPPORT NETWORK Support group for Moms of children and adolescents ages 5-18 years old with Fetal Alcohol Spectrum Disorder. For more information please contact Joeli Gutfleisch 805-796-7683, joelig17@gmail.com or https://sites.google.com/site/socalfasdnetwork/ SUPPORT FOR ALL SPECIAL NEEDS PAUSE4KIDS INC PAUSE4kids provides information, support and services for residents of Ventura County and nearby areas. For more info go to http://pause4kids.org/ or call 805-4979596. The Special Education Advocacy Assistance designed to assist parents in advocating for their child's needs. The meeting is held the first Wednesday of every month, September through June, from 7:00 PM - 8:30 PM. Contact Special Ed Law facilitator: Kathy Greco malibulaw@aol.com AAC PARENT SUPORT 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 *EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month – Meeting location Varies. Support group for active and retired military families with children with special needs.
(Continued) Fall 2017 | TriLine | 11
Ventura County
SAN LUIS OBISPO COUNTY
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.
For information please Contact: Scott Council, Military Liaison for Special Needs, at 805-982-2646 or scott.council.ctr@navy.mil
would like to be added to the email list or if you have questions, please contact Susan at susan@baukus.net
THE TRANSITIONS SUPPORT GROUP For parents of children and young adults aged 10 – 28 and young adults who have 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
UNITED PARENTS A parent run non-profit that helps families raising children 4-18yrs with emotional, mental, and behavioral disorders. For info call Hannah Abitia (805) 384-1555.
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 and parents available for mentoring and support. A reliable source of current information, referrals, and training, PHP regularly e-mails a calendar to interested families. Contact: SLO (805) 543-3277, Atascadero (805)461-7415, Grover Beach (805)904-6625 or php@ucp-slo.org www.facebook.com/ParentsHelpingParentsSLO/ San Luis Obispo PHP Library, 3450 Broad St, Suite 111, SLO * bilingual Español/English staff are available Atascadero PHP Library, 7305 Morro Rd, Suite 104A, Atascadero 12 | TriLine | Fall 2017
Grover Beach PHP Library (Open by Appointment), 940 Ramona Ave, Suite M, Grover Beach PHP SPONSORED EVENTS **For ALL PHP events please RSVP to php@ucp-slo.org or call 543-3277. MINDFULNESS WORKSHOP Join Dee DiGioia, former SLP, and PHP for a lunch time workshop for parents of school age children and professionals. Dee will address: What are the challenges for youth in school today? What is mindfulness? Will it help MY child? November 29 from 1-2 pm. RSVP to 5433277 . Call with questions. PARENT ORIENTATION TO SPECIAL EDUCATION Wednesday, November 29, 5:30-6:30 pm Morro Rd Education Center, 8005 Morro Rd, Atascadero. RSVP to 782-7301 *Evento en Español si llame antes del 11/22/17 UCP SPONSORED EVENTS SLO EXCURSIONS is a program that takes place in “real-life” settings, allowing teens to receive handson behavioral support while enjoying fun and new everyday activities with friends! Please e-mail CJ Tilford at cjtilford@gmail. com for more information about dates, times, and locations
ARTS FOR LIVING Has a lot of music opportunities going on – check out http://www.artsforliving.org/ and click on programs – they have two music clubs in SLO and one in Atascadero. GLEE CLUB Is an inclusive community choir joyfully singing a variety of styles of music and improvisation in a supportive environment! – They meet every Wednesday, from 5:306:30 pm at the UCP SLO Office, 3620 Sacramento, Suite 201. Call Laura to Reserve YOUR Space for either group: 805-225-6101 or email artsforliving@ ucp-slo.org ARTS FOR LIVING SAVORY SOIREE Music, art, wine appetizers and auction Saturday November 4, 6-9pm.For more information call (805) 225-6101 LOCAL EVENTS HASLO SECTION 8 Apply online for the Housing Choice Voucher (Section 8) Interest List. This is the first time that the list has opened in about 5 years and if you get on it, it still takes a year or more to get a voucher. Your adult child may have options in the future. It's a good idea to place their name on the list. November 1-14 online only at www.haslo.org SLO PANDAS/PANS SUPPORT GROUP This group is for families currently with a diagnosis of PANDAS/PANS (Pediatric
Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and for families looking to learn more. Second Thursday of every month at 6:30 Next support group: Thursday November 9, 6:30-7:30 pm ** RSVP BY NOVEMBER 7 PHP Library, 940 Ramona Ave, Suite M, Grover Beach. For more information contact: slopandaspans@gmail.com or Zoe Jones 703-5688574 WREATH MAKING Make your own wreath to benefit Special Olympics. S’more and cider included! Saturday, December 2, 2017 11am-1pm Jack Creek Farms, Templeton. For more information (805) 544-6444 or kshannon@ sosc.org PROJECT SEARCH OPEN HOUSE Project SEARCH is a one-year internship program for students with disabilities, between the ages of 22-35. It is targeted to students whose goal is competitive employment. Interns will experience total workplace immersion and a seamless combination of classroom instruction, career exploration and on-the-job training and support. Sponsored by PathPoint. Come to an informational night. Wednesday, November 1st at 5:30 at Embassy Suites by Hilton- 333 Madonna Road, SLO Questions: Contact Parker, (805) 782-8890 x1518 or parker.hall@pathpoint.org ONGOING EVENTS MINDFUL KINDFUL YOUNIVERSITY "YOUnique Fitness" (music, movement, and mindfulness) is a new class starting in Los Osos for special needs youth. Dee DiGioia, a former speech language pathologist, is a Certified Mindfulness Educator & Life Coach. Contact: mindfulkindfulyou@gmail.com; 805-270-5523 REACH: REALISTIC EDUCATION ADDRESSING CONDITIONING AND HEALTH A new YMCA class for children and families impacted by Autism. Participants will be divided by age and/or abilities based on parent surveys and instructor observation. Any skill level welcome between ages 6-18. The goal of the program is to empower
those on the spectrum with independent living skills, physical activity and fun! YMCA membership is required. Saturdays. Ages 6-12 11:30am-12:15pm, ages 13-18 1-1:45 pm. Contact April for more information 5438235. alewallen@sloymca.org CLUB 42 Club 42 is a social gaming club and activities center (developmentally disabled, elderly, 11 years and under are always free.) Atascadero. www.club42atascadero.com STORYTIME AT THE GROVER BEACH COMMUNITY LIBRARY Kids of all ages are welcome for stories, songs, and surprises in both English and Spanish. Niños de todas las edades están invitados para cuentos, canciones y sorpresas en inglés y español. Únete a nosotros cada lunes a las diez y media. Mondays at 10:30am at 240 N. 9th St., Grover Beach. 240 N. 9th St., Grover Beach. *Evento en Español* SOUTH COUNTY PARENTING SUPPORT GROUP The group provides parent education and information about community resources for family support as well as a safe and confidential place to share concerns and learn with other parents. Facilitated in Spanish by Ximena Ames. Fridays, 9am – 11am, First 5 School Readiness, 1551 17th St., Oceano. For questions, call Ximena: (805) 462-7135 GRUPO DE APOYO PARA PADRES DEL CONDADO DEL SUR Está invitado a un grupo de apoyo para padres que es totalmente gratis. El grupo ofrece educación para padres e información de recursos disponibles en la comunidad para el apoyo familiar. El grupo va a proporcionar un ambiente seguro y un lugar donde podrá compartir inquietudes y aprender con otros padres de manera confidencial. Los viernes 9am – 11am, Oficina de First 5 School Readiness, 1551 17th St. Oceano. Para preguntas, llame a Ximena al (805) 462-7135. *Evento en Español*
NAMI: FAMILY-TO-FAMILY Do you have a family member or friend with a mental illness such as depression, bipolar disorder, schizophrenia, borderline personality disorder, or obsessive-compulsive disorder? Family-to-Family can help you! It is an educational program for family members and friends of individuals living with mental illness. It offers knowledge, training and emotional support and is free. The course meets 2 ½ hours per week, for 12 weeks. For more information, call Martha Elias at (805) 234-4369 or Jackie Garza at (805) 801-4376.
SAN LUIS OBISPO COUNTY
San Luis Obispo County
NORTH COUNTY ADAPTIVE SPORTS AND RECREATION PROGRAM Do you want to incorporate more fun, sports-like activities into your child’s life? This program offers weekly events, including swimming and kickball! Swimming is held at the Atascadero Kennedy Fitness in the indoor pool: Mondays from 6:007:00pm, Kickball is held on: Thursdays from 6:007:30pm at the Atascadero Community Center. Check the calendar on the Website: http://ncasarp.org/ and conact by email at info@ncasarp.org STRIDE'S FRIDAY CLUB A free weekly sport program put on in conjunction with the SLO Special Olympics. Every Friday 10-11 am (elementary – high school students) 11-12 pm (young adults) 12-1 pm (older adults) @ Cal Poly’s Recreation Center Main Gym. Email kinesiology@calpoly.edu or Michael Lara at mlara@sosc.org
Fall 2017 | TriLine | 13
The Journey of Cannabidiol
by James O’Hanlon, Ph.D., Psychopharmacologist The rise of cannabidiol (CBD) to prominence began on August 11, 2013 with a CNN documentary about Charlotte Figi, a 5-year-old born with a rare, single-gene mutation that causes a devastating type of epilepsy – Dravet syndrome. Her tonicclonic (grand mal) seizures began at six months of age. By the age of three, she was having 300 per week, despite treatment with standard antiepileptic drugs (AEDs). Had this continued, she would have been physically and intellectually disabled and possibly died before reaching adulthood. On the advice of a friend, her parents tried an extract of marijuana that contained an unusually high concentration of CBD. Charlotte’s seizures declined after the first dose. When the original supply was almost exhausted, her parents contacted the Stanley brothers, respected “artisanal” cross-breeders of marijuana and hemp, who had developed an oily extract containing CBD as practically the only active component. On CBD, the girl’s seizure frequency stabilized at about four per month. The public reaction to CNN’s broadcast is hard to exaggerate. Parents whose children were afflicted with any type of intractable epilepsy clamored for access to the CBD-rich oil, and in States where that was then prohibited by Law, found means to circumvent the restriction. Other manufacturers rushed to produce their own artisanal CBD oil with variable and often dubious results since all are unregulated by FDA. Not to be outdone, the Stanley brothers changed the name of their product from “Hippies’ Disappointment” to “Charlotte’s Web” and went into high production. Cannabidiol (CBD) is one of at least 113 cannabinoids synthesized by the plant, cannabis sativa. CBD and ⁹-tetrahydrocannabinol (THC) are the principal members of this family. THC possesses psychoactive properties owing to its strong affinity for a particular receptor type in the brain where its action mimics and in ways exceeds that of natural transmitters. CBD has little affinity for the same receptors and produces no subjective changes that gratify the user. But obviously CBD has some mechanism 14 | TriLine | Fall 2017
of action in the brain, perhaps several. Scientists were caught off guard by the antiepileptic efficacy of CBD and are now struggling to explain it. The number of relevant publications has jumped from 5 in 2013 to 36 in the first half of 2017. Various mechanisms have been proposed but none is generally accepted. About all that is certain is that the antiepileptic mechanism of CBD is unlike those of standard AEDs. If scientists were slow to react to the CNN broadcast, BIG PHARMA was not. Before the end of 2013, GW Pharmaceuticals (GWP), a British corporation specializing in developing drugs from cannabis extracts, petitioned FDA to designate their own purified CBD oil (Epidiolex®) as an “orphan drug.” This allowed selected neurologists to prescribe Epidiolex to epileptic patients whose seizures resisted approved AEDs. GWP also began the process of filing for a permit (Investigational New Drug) from FDA for allowing the company to conduct clinical trials in the U.S. with Epidiolex as treatment for Dravet syndrome and other epilepsies that emerge in early childhood and resist standard AEDs. Now, four years later, the first results of GWP’s massive effort are emerging.
receive placebo; i.e., from 14.9 to 14.1 per month. Three (5%) Epidiolex but no placebo completers were seizure free by the end of the trial. Results of the Lennox-Gastaut trial were similar: 72 (84%) participants completed Epidiolex treatment and 84 (99%) completed placebo treatment. Prior to treatment, their respective median dropseizure frequencies were 71/mo. and 75/ mo. During treatment, median drop-seizure frequency fell by 44% among Epidiolex completers and 22% among placebo completers. Again, three (4%) Epidiolex but no placebo completers were drop-seizure free by the end of the trial.
GWP has submitted a New Drug Application to FDA for approval of Epidiolex marketing and prescription for seizure control in Dravet and Lennox-Gastaut syndromes. FDA’s decision is expected this year. GWP is not stopping there. Phase III trials of Epidiolex in Tuberous Sclerosis are underway and early results are promising. Phase II trials with Infantile Spasms have recently begun. The four epilepsies addressed by Epidiolex are very different with respect to etiology and clinical presentation. It would be surprising if the drug were shown to similarly effective in every trial. But even if GWP’s success in clinical trials continues there may be After preliminary Phase II trials to confirm other hurdles ahead for the company. CBD efficacy, establish safety and define an is currently defined as a component of optimum CBD dose, GWP initiated parallel marijuana under Federal statutes. As such, Phase III trials with Epidiolex for treatment CBD is a Schedule I substance under the of Dravet and Lennox-Gastaut syndromes. Controlled Substance Act; i.e., with abuse Both trials followed essentially the same potential but no accepted medical use. It is protocol. Children and adults were selected difficult to imagine how FDA could approve who met the diagnosis and whose seizures Epidiolex before CBD is rescheduled. There were poorly controlled by multiple AEDs. is also potential litigation pending that They continued to use these drugs during may delay the drug’s arrival on the market. the trial. Approximately half of them received Epidiolex has the status as an orphan adjunctive Epidiolex and the others placebo, drug. According to the Orphan Drug Act: double-blind, for 14 weeks. Results of both “The first NDA applicant to receive FDA trials are available from GWP and those from approval for a particular active ingredient to treat a particular disease with FDA orphan the Dravet trial have been published.1 drug designation is entitled to a 7-year exclusive marketing period in the U.S., for In the Dravet trial, 61 participants received that product, for that indication.” Artisanal Epidiolex and 59, placebo. Respectively, providers of CBD, like the Stanley brothers, 52 (85%) and 56 (95%) completed the trial. can hardly be expected to stand aside Prior to Epidiolex treatment, completers had a median frequency of 12.4 convulsive while GWP acquires their market: they will challenge any such ruling in Court. seizures per month. During treatment, their median frequency fell to 5.9. In 1 Devinski O, Cross JH, Laux L, et al. Trial of Cannabidiol contrast, median seizure frequency hardly for Drug-Resistant Seizures in Dravet Syndrome. New changed among participants assigned to England Journal of Medicine 2017;376: 2011-20.
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† In February of 2012, Peter Stoner was invited to present his ideas on the abuse of people with developmental disabilities to a gathering of Human Services professionals in San Luis Obispo County. He adapted this presentation using excerpts from My Life Inside and presented it using a Dynavox voice synthesizer. Good Morning. I am Peter Stoner, and I have been an advocate for people with developmental disabilities in the community for 35 years, first in Orange County, now here in beautiful San Luis Obispo. I’ve been asked to give you my views on abuse, and I hope these remarks will be helpful to you. The first memorable case of abuse in my life occurred when I was just 5 years old and living in the first of 3 institutions where I would spend my childhood through early adulthood. It happened on several occasions that staff there found it expedient to quell my 5 year old exuberance by tying my arms and legs to my bedframe and taping over my mouth to keep me in check. I thought this was normal and acceptable behavior until my stay at the place came to an abrupt end when my grandmother found me in this state on an unannounced visit one Tuesday morning. In the 1970’s, during the very early days of the Independent Living movement, we were young, naïve, and very inexperienced. Regional Centers were just getting going and there were few services available to support independent living in the community. As a young paraplegic man living in his own apartment who had recently won his freedom from institutional life, I was reduced to taking out a local newspaper ad for a new attendant. The result was Jim (not his real name) a small-time con man with a record as long as your arm. Once hired, the first thing Jim did was take control of everything related to finances in the apartment I shared with my 2 disabled roommates. Suddenly, we couldn’t do the shopping anymore! Jim was visiting the Food Bank weekly and
pocketing most of our grocery money. At home he would pull us out of our wheelchairs then passively watch as we struggled to get back in. We later found out he had made friends with unwitting people living in the various institutions around Orange County and offered to take the brand new TV sets they had received from relatives out for repair. He’d later return with an apology and the news that the set was unfortunately not repairable. It was later exposed that Jim had merely unplugged these TV’s, taken them for “repair” and sold them for his own profit. This case of naked abuse could have been prevented with a good background check that was not available to us at the time. Interestingly, one person’s abuse can be another person’s act of compassion. I was a religious young man and had recently become involved with a church I felt an affinity for. When invited on the spur of the moment to a prayer meeting, I eagerly accepted, hoping for new friends and the spiritual direction I was craving. During the meeting, however, I began to become increasingly uncomfortable as I was surrounded by well meaning but extremely ignorant people praying to cast the demon of cerebral palsy out of my body. I was singled out because my appearance of difference was perceived to be evil. Yes, it is abuse to enforced an exorcism, no matter how well intended. Cerebral palsy is not a spiritual condition and it will not go away, no matter how many times you invoke the name of God. I’d like to point out a form of abuse that is subtle, yet I’ve seen and felt it all my life. It is so institutionalized and ingrained that at first glance it may not appear to be abuse to most of you. I think it is very abusive to assume that every person with a developmental disability is the same as every other person with a developmental disability. How readily people who vary from the norm (whatever that is) are seen as anomalies! I wonder how many minds throughout the ages have been locked away or denied because an uninformed professional told parents: “This child will never progress. Put him with people like
Peter used his left foot to write
himself, where he can be taken care of.” Or, as in my own case, parents may say: “Why not give this child over to the care of professionals who know what they are doing?” Sadly, I believe that many potentially gifted minds and open hearts have been lost to the institutional environment. To me, this is real abuse. I want to leave you with a final thought: It is that: Not being able to speak is different than not having something to say. When it comes to people with developmental disabilities, judging a book by its cover may equal abuse. So talk down to no one, and always presume competence. You may be talking to Stephen Hawking, or if even if that’s not the case, you are at the very least talking to a human being, someone with needs, wishes, and dreams that may be different from, but equal to your own, though he or she may be unable to verbally express them. First and foremost, speak directly to that person rather than to a third party, such as to their personal assistant. Ask how and if the person needs any help and be observant. Watch for facial expression, body language and eye contact when seeking the person’s response. In one way or another, he or she will let you know how they feel. Peter Stoner authored numerous articles and essays on topics ranging from personal perspectives on disability to euthanasia and political action. The above excerpt is from Peter Stoner’s “My Life Inside”. With the aide of a Dynavox communication device, Peter delivered public presentations locally, as well as testified on behalf of disability rights. Peter died peacefully in Spring of 2016 in San Luis Obispo. †Deceased 28 February 2016. Fall 2017 | 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 Robyn Adkins, President, TCADD Board of Directors of the lives of people with developmental disabilities. Continued funding for paid internships gives individuals living in this regional center’s catchment area a key opportunity. This opportunity has been extended to youth age 18 - 22 to access the paid The signing of the FY internship funding. Early 2017/2018 California State experiences in work settings Budget (AB 97) along with Trailer Bill Language (AB 107) is support building of career a shift from other years. There interest, confidence competing in the job market and is an emphasis on housing, employment and safety; topics the chance to socialize and build community through important to quality of life for networking. people with developmental disabilities. We don’t often see Safety is always on our mind. Trailer Bill Language with this Certainly as a parent, the safety critical focus. These topics are of my son is paramount. I’m hallmarks of community life pleased to see emphasis in that we all need and expect. Trailer Bill Language around Although housing is certainly ensuring safe environments for a financial challenge, we the people we serve. We are are seeing that this budget certainly past the time of using allows for flexibility in the use seclusion to modify behavior. of funding, such as allocaI’m relieved to see that seclution of available Community Placement Plan funds for Com- sion can no longer be used munity Resource Development in Developmental Centers. Plans. We can always do more Guidelines for use of restraints in Developmental Centers and for resources in housing. Housing must continue to be a Enhanced Behavioral Support Housing facilities are crucial. focus for our state system. The Department of Development Services is tasked with Employment enhances both ensuring that guidelines are financial and social aspects
developed and followed. I see incident reporting as an important part of maintaining quality services. We must ensure that our reporting structure is monitored and that strict standards of compliance are enforced. We must be rigorous around this issue. We await the final approval of the Self-Determination program at the federal level. I look forward to learning of the experience of those randomly selected to participate when the program moves to the next stage of implementation. With all of the challenges around delivery of quality services, I’m so proud of TCRC for leading the charge of implementing Person Centered Practices. After more than a decade of hard work, learning, and decision-making, TCRC is at the forefront of the Person Centered initiative and host of the Annual California Gathering for Person Centered Practices. This year, as usual, the event sold out quickly and drew attendees from staff, service providers and other regional centers.
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 preserve quality of life and protect the rights of individuals with developmental disabilities. Editor & Design: Heather Wennergren | Writing Team: Heather Wennergren, Patricia Forgey, Nancy Black & Steven Crusinberry 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 Robyn Adkins President
Ryan Wilkinson Vice President
Ada Gonzales Secretary
Tim Farrar, PAC Representative Sharon Francis VAC Representative Shirley Dove Diane Figueroa Mani Gaur Michael Kaszycki Thomas Kline Howard Kraus Ralph Morales Robin Rosso Mark Wolfe
2018 Upcoming Board Meetings Feb 2.............................6:00 PM (SB) Mar 3.............................9:00 AM (SB) May 5............................10:00 AM (SM) June 9...........................10:00 AM (OX) July 14..........................10:00 AM (SV) 2018 Upcoming Town Hall Meetings Feb 21.......................................... SLO Mar 7................................................ SB May 16............................................ SV July 11........................................... SM