A Publication of Tri-Counties Regional Center | Spring 2017
Cover Story 01 Kat Gets a Home of Her Own Featured Articles 03 Taking Action for Positive Change: Three Advocates Make a Difference 06 MOVE - Mobile Opportunities Via Experience 07 Graceful Expressions: One Young Woman is Changing Minds Through Dance 14 What Drug Is Best For Treating Hyperactivity In Autism Spectrum Disorder (ASD)? 15 New Discovery - Genetic Mutation Linked to Seizure-prone Brain, Autism 15 Visit Disneyland at a Discount This Fall 15 PAC Committee Fundraises to Send Member to Supportive Life Conference Recurring Topics 02 From the Executive Director 08 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.
Kat Gets a Home of Her Own
Realizing a Dream Through Person Centered Planning
Kat Talks About Person Centered Planning, her Goals, and Circle of Support
Kat Baker and her Service Coordinator, Devon McClellan, have used Person Centered Practices and Planning to help Kat get the life she wants. For years Kat struggled to find her place and to achieve a new level of independence. “I love playing games, or reading books. I write short stories, as well. I’m really introverted. I have such anxiety around people. I’ve always felt nervous, just like, ‘don’t touch me.’ It’s a thing. With this group (circle of support), I’ve overcome my fears, and I’m so grateful. The way that they’ve helped me is infinitesimally amazing.” Together, they use Person Centered Practices. “Person Centered Thinking to me is finding ways to help yourself,” Kat shared, “and having the backup to help yourself do it. I have a lot of people behind me. I have the people from the PathPoint day program; and Devon helps me just in general, so much. For instance, when I need help doing something, that’s part of her job. She helps me figure out how to get into a program and what to do in the program. I had an IPP (Individual Program Plan) meeting in August. I had the role in that meeting of the person needing help; continued on page 4 Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D. Budget concerns have been a long-standing companion of the developmental services system. In 2016 we acknowledged successful advocacy that resulted in hard won additional funding for providing services and operating regional centers. As the proposal of the fiscal year 2017-2018 Budget for California was announced in January 2017, we now shift focus to potential reductions in funding from the federal government. Approximately 40% of regional center funds come from the federal government. There are two major funding concerns for the developmental services system. The first is a possibility of reduced State funding for Medicaid (Medi-Cal for California.) Secondly, there may be use of General Fund monies for healthcare services if a repeal or partial repeal of the Affordable Care Act (ACA) occurs without a seamless transition to another program and the state continues to fund services as currently provided through the ACA. Over twenty billion dollars in federal funding is included in the proposed budget for provision of healthcare coverage for five (5) million people in California through ACA insurance and Medi-Cal. This allocation is also planned to support expansion of Medi-Cal. For fiscal year 2017-18, the developmental services system is proposed to be funded with approximately $6.9 billion. Federal funds should amount to $2.5 billion, roughly 40% of the proposed state funding. The January budget includes funding for new and important resources for people receiving services, including paid internships and incentive payments for competitive integrated employment (CIE.) Developing employment opportunities for people receiving services is such an important part of supporting a quality community life. Funding was provided in the 2016-2017 budget to ensure the delivery of culturally and linguistically competent services. TCRC welcomed 2 | TriLine | Spring 2017
Lilia Rangel-Reyes into her new role as Multicultural Specialist in January. Ms. Rangel-Reyes has been accepted to participate in a national Leadership Institute on Cultural Diversity and Cultural and Linguistic Competence. We look forward to Lilia’s contributions in this important work. Funds have also been earmarked for: • Safety Net Services • Self-Determination Services • Enhanced Behavioral Supports Homes and Crises Homes • Centers for Medicare & Medicaid Services (CMS) Final Regulations for Home and Community Based Services • Developmental Services Task Force Our system has continued to refine our resources and plans to support individuals with higher needs for behavioral support. Safety Net Services are intended for individuals moving to the community from IMDs and from developmental centers, including individuals residing in the Porterville DC secure treatment program. Intensive supports within a community residential model are best suited for individuals moving from these more highly restrictive and specialized residential services. Enhanced Behavioral Supports Homes and Crisis Homes are also in development to assist individuals to move into the community. Self-Determination Services are closer to approval from CMS. The Department of Developmental Services has now responded to all requested information from CMS for federal approval for the delivery of services. TCRC’s Local Advisory Committee for Self-Determination has met regularly quarterly; look for information about the Committee and the future meeting dates on the TCRC website. If you are interested in applying for Self-Determination Services, let your Service Coordinator know. Another initiative awaiting CMS approval is the Statewide Transition Plan (STP), as the Department of Health Services has re-submitted the STP) for approval.
This Plan will ensure compliance with regulations for Home and CommunityBased Services for individuals receiving Medicaid. DDS will develop a process for implementing federal regulations through the input and guidance of a stakeholder group. 2016 funding allows for regional center staff to assess providers’ compliance as well as fund service providers to make necessary modifications. TCRC will develop methods of ensuring that providers are supported to meet the requirements. With the uncertainty around the impact of any changes in federal funding for the developmental services systems as a result of reductions in Medicaid, or the Affordable Care Act, we face very different challenges than in recent years. It is critical for our system to develop strategies for informing members of Congress in Washington, as well as legislators in Sacramento. Once the May 2017 revision of the 2017/2018 California Budget is announced, we will have more information about talking points and specific issues to emphasize in our communications with our legislators and the federal government. For more information about the budget and to track budget committee and subcommittee hearings, visit the Budget Watch section on the TCRC web site. Please stay informed and opt into TCRC’s email list at www. tri-counties.org. As the developmental service system faces this potential challenge, TCRC remains committed to ensuring that quality services support community lives for people with developmental disabilities. Let’s all work together to respond with a strong advocacy plan as we learn more about the framework of the CA budget and the potential impact of reductions in federal funding. I commend those who have worked tirelessly advocating on behalf of people with disabilities, we will stand strong, we will remain united.
Taking Action for Positive Change: Three Advocates Make a Difference by Steve Crusinberry & Nancy Black
They say a journey of a thousand miles begins with a single step. For some of us taking that first step can seem daunting. That journey could come in many forms: striving for a personal goal, taking on a home project, embarking on an educational path, or in some cases, becoming an advocate to improve the lives of other people. It all begins with an idea, and more importantly, the motivation to see that idea through to its conclusion. David Kremer was a man with an idea. David was a frequent passenger on the Santa Barbara MTD bus, and he took offense at the “Disabled” bus pass that the city had given him. “I have a disability, but I am not disabled,” said David. “I did not like the way that word treated me. I felt like I was being put down,” he said. So David took that first step to have the city of Santa Barbara change the name of the bus pass. This was no small feat. He lobbied hard, and gave a formal presentation to the Santa Barbara Metropolitan Transit District (MTD) outlining his ideas for a new designation for the “Disabled” pass. His advocacy was successful, and the city changed the name of the pass from “Disabled” to “Mobility,” with David being issued the very first Mobility pass at a ceremony at MTD headquarters. He also received a certificate for his efforts from then Congressmember Lois Capps, and an article was written about him in the Santa Barbara News Press. Lois Capps said that the work that David had done was “an inspiration for the community.”
Lois Capps & David Kremer
Donald Geagan is another motivated individual with ideas for positive change. Donald was using private bus transportation to and from his UCP (United Cerebral Palsy) program in Thousand Oaks. Thousand Oaks can get very warm in the summer, and not every bus that they used had adequate air conditioning. Donald was concerned about the welfare of some of his fellow bus riders so he launched a successful campaign to have the transportation provider use only airconditioned buses. His fellow bus riders were truly grateful. “Everyone thanked me,” said Donald. That wasn’t the end of Donald’s journey for advocacy, though. When Donald found out that his UCP program was considering a move to a new facility, he sprang into action once again. The UCP program had been in the same location for 29 years, the location was ideal, and the bathrooms were fully equipped and
give up. Keep trying until you get positive results.” Thomas Coffey is an avid bowler. He frequents a local bowling alley in Goleta. Occasionally the elevator would be out
Thomas Coffey
of order, so he asked the staff to take out the elevator and put in a ramp instead. The bowling alley management agreed to make Thomas’ suggested changes in their remodeling! “I told them that I was advocating for everyone in wheelchairs. It also impacts my friends. People at Alpha Resource Center go to the bowling alley and they had the same problem.” Thomas is pleased that his request will benefit others. Finding solutions can start with finding the right person to speak with. “Just go and talk to the people at the place and let them know your feelings about it!”
Donald Geagan
recently renovated. Donald felt this move would be disadvantageous for himself and for the other participants. He recruited his friend Judy, and his father Joe. They presented their case to the Conejo Valley Board of Education to keep the program at its current location. Donald also got other members of the community to join in and write their feelings about the proposed move. There were a few hurdles along the way, but the Board listened to their plea and agreed to keep the program in place. Donald was overjoyed. “I felt on top of the world that they would listen,” he said. Donald’s advice to others with an idea for change: “Don’t
Thomas continues his advocacy, “I’m the President of one group of the Applied Abilities Program for Work, Inc. I help the people who have problems with the roads, the sidewalks, or if they’re having problems with organizations for the disabled. It takes motivation, tenacity, and courage to speak out for ourselves and others, but often a lone voice can get positive results that can be of great benefit for many. Though our journeys may be littered with obstacles, we can all be inspired from the example that Donald, David and Thomas have set, and take that first step. Share your story of advocacy! Email hwennergren@tri-counties.org and your story may appear in an upcoming issue. Spring 2017 | TriLine | 3
Kat Gets a Home of Her Own
Photo Credit: Isaac Hernandez
...continued from cover by Heather Wennergren & Nancy Black
Kat with her Service Coordinator, Devon
so I was in charge of what I needed, but they helped me to get it.” In her IPP meeting, Kat brought up an issue she was struggling with around transportation. She didn’t like sitting on a bus for an hour and a half to get home from her program. With some help, she was able to find another bus and shorten her travel time. Devon reflected, “It sounds like people really listened to what was important to you. By listening, they were able to customize or personalize the transportation to meet your needs.” Kat grinned, “I’m so glad that they listened!” Kat reflects on how receiving services has helped her focus, “Before I joined, I never knew what purpose to follow… I didn’t know what needed to be done, what needed to be focused on. So when I came to this group, everything got so centered that I was able to figure out - - this needs to be done, this can wait for the future - and my health really took an up-turn, it really got better.” Person Centered Planning keeps the individual at the center of the decision making when possible. Recalling her last IPP meeting, Kat comments, “If needed, I can add family members to the meetings and we’ll have a big Pow Wow.” Kat controls who’s invited to her meeting. She also picks a location where she feels comfortable. Kat’s circle of support works together to help plan. “It’s more of a group decision 4 | TriLine | Spring 2017
about what we talk about at the meetings, with my health, or transportation, or doctor’s appointments… a lot of that gets decided by the group. When I talk about the group, I mean Tri-Counties Regional Center, PathPoint, this program, and my family… because all these groups together are my entire defense and my power to help me determine what needs to be done. They just help me so much… they aren’t just people who do their jobs for me. No, they’re family. They help me so much; they have become a part of my family. Family is not always related by blood.” Devon met Kat when she was temporarily assigned to her case. “When I first started working with Kat, she was talking about her Section Eight voucher for housing, and I heard how important that was, living on her own. After that first meeting, there was a spark in her that I was really drawn to, and so I asked to stay on her case; I said, ‘I want to see her see this vision through.’ So I became her permanent Service Coordinator, and we met about three times, and started doing the ‘Important To’ and ‘Important For’ sort, so I could get a sense of where she was in her life in this moment, and so she could find that balance, to be healthy and safe and live on her own, which was something she really wanted.” Recalling Kat’s initiative to get her own place, Devon shares, “I was so honored to sit back and watch you take charge of that dream, of living alone, on your own, in your own place. It was really beautiful watching you blossom.”
Kat laughs. “That was a dream that came true! For a long time I dreamed of living on my own, and because of you guys, I was able to bring it to fruition. I was finally able to live on my own.” Kat had been waiting for a Section Eight voucher for eight years, and it finally came. “I was a nervous wreck,” adds Kat, “The fact that it finally came up was so awesome… so scary… that I knew I would need help to get through it.” Kat recalls the discussion she had with Devon and her circle of support. “You were all talking about your experiences, moving out for the first time, and the fear, about what was that going to look like. You helped me out so much with my feelings of confusion, and fear and anxiety. When you told me about how things went for you guys, I thought, ‘this might really work. This might really be possible.’ You guys helped me do it!” Kat was instrumental in the planning and preparation for her meetings. She really took control of the situation. Devon explains, “She was guiding us with what she wanted and how she wanted it to go. We were there with questions to clarify, so that we were on the same page. She was really the driving force of making her dreams happen.” Person centered planning, thoughtful teamwork and some “true grit” helped Kat realize her dream of living independently. Where to from here? Kat answers, “For the future, I really want to get healthy. I’ve had trouble with my health since I was little, so being healthy is an important dream of mine.”
Kat & Devon Celebrate a Milestone
Person Centered Thinking training introduces several PCT skills. These graphics help guide information gathering, decision making and action planning. The Important TO / FOR sort differentiates the voice of the person receiving support from the voice of the professional or program. It can be used to better understand a person's wants or needs. The Four + One allows participants to reflect on their learning and from that learning take action to move a situation forward.
Four +
Important To / Important For 1
Important to?
Important for?
What else do we need to learn/know?
ne
2
What have we tried?
What have we learned?
3
4
What are we pleased about?
What are we concerned about?
+1
What do we try next based upon what we have learned?
Person Centered Practices
by Mary Beth Lepkowsky, Assistant Director & Tina Calderaro-Mendoza, PCT Coordinator What is Person Centered Thinking? Person Centered Thinking (PCT) is the philosophy behind everything we do at Tri-Counties Regional Center (TCRC). At its core, PCT is a simple idea: Put individuals first, listen carefully and learn who they are and what they want from life, then work together to set goals, create personalized plans, and put them into practice. Being person centered also means always treating others with dignity and respect. PCT recognizes the right of individuals to make informed choices and to take responsibility for those choices and the related risks. When we use PCT, we strive to build on the strengths, gifts, talents, skills, and contributions of every individual. Why does TCRC use Person Centered Thinking? TCRC uses Person Centered Thinking in all we do because we believe that PCT provides the best approach to learning about people and honoring their dreams, capacities, and even their fears. PCT guides all of our activities and provides a common thread among them. We believe that using person centered practices throughout TCRC ensures that being person centered will become our natural approach to problem solving, relating to others, and our work with the individuals and families we support, service providers, coworkers, and our community partners. We put PCT into action through a variety of person centered practices at TCRC,
but the most important of these is Person Centered Planning. Person Centered Planning is a guided process for learning how someone wants to live at home, at work, and in the community and for developing a plan to help make it happen. Person Centered Thinking ensures that the focus of our work and planning stays on the perspectives of the individuals affected by the planning. PCT can do this by helping us learn what is important TO and important FOR the people we serve. Things that are important TO individuals are what matters most to them and makes them happy. Things that are important FOR individuals are what they need to be healthy and safe and valued as members of their community. Who is involved in Person Centered Planning? Planning Teams include the person receiving services, the service coordinator or other TCRC staff, service providers, support staff, and any family members, friends, or others selected by the person served. Where can I learn more about Person Centered Thinking? Everyone is encouraged to attend one of TCRC’s Person Centered Thinking Training sessions. During these sessions, TCRC brings together regional center staff members, service providers, the individuals we serve, and their families and friends to learn about the basics of PCT. You will learn creative ways to gather and share
meaningful information, resolve problems, and create goals and action plans. Find schedules at www.tri-counties.org. If you enjoy what you learn at the PCT Training session, you can get involved in our Communities of Practice. With meetings every other month at each TCRC office, the Communities of Practice dig deeper into topics introduced at the PCT Training and help to build your skills as a person centered thinker. During Communities of Practice meetings, TCRC staff, the individuals we serve, and service providers collaborate to figure out how we can use PCT to improve all of our working relationships, and the lives of people we support. For more in-depth information on Person Centered Thinking, visit: • The International Learning Community for Person Centered Practices at www. learningcommunity.us. • TCRC and partners host the annual California Gathering for Person Centered Practices, a collective learning event focused on sharing knowledge and furthering efforts to promote person centered system change. Learn more at www.tri-counties.org. • Helen Sanderson Associates, a UK-based international team that works collaboratively to embed person centered practices in the heart of teams and organizations, at www. helensandersonassociates.co.uk/about. • John O Brien, www.inclusion.com Spring 2017 | TriLine | 5
MOVE - Mobile Opportunities Via Experience by Heather Wennergren
they can do something new or when they take their first steps. My job is magical. I get to help people realize their dreams,” stated Wallace. Some of these actions many take for granted. “On his first walk in the pacer, one young man went straight to the mirror. He wanted to brush his own teeth and put styling gel in his hair. Another gentleman, Jesus, took his first steps at age 50. He cried and asked me to take a video to send to his brother,” stated Wallace.
Lorena & Nancy use pacers to walk
The Mobile Opportunities via Experience (MOVE) Program at The Arc of Ventura County is designed to assist individuals who spend a lot of time in wheelchairs to safely stand to explore their communities. Over 60 people are currently participating in the program and making great strides, which range from participants just taking their first steps to those who are walking on a daily basis. “When a person with cerebral palsy can stand for the first time and meet you eye-to-eye, it’s a huge achievement,” shares CEO Patty Schulz. It’s 3:00 p.m. and a busy time of day for Holly Wallace. People transitioning out of the day program stop to give Holly a shout out. “I’m kind of a rockstar,” Wallace admits reluctantly. And it’s plain to see why. Wallace is the MOVE Coordinator, and her work holds a special appreciation for the participants. Wallace helps coordinate the scheduling of “pacers” that participants use while at The Arc’s Community Integration Program in Santa Paula. The pacer gait trainers are made of lightweight titanium. “What makes them special is the design of the ‘prompts’ that offer comfortable support and encourage forward progress,” stated Schulz. The pacer is customizable to height and the prompts may be adjusted 6 | TriLine | Spring 2017
for various body types. “The pacers are some of the best equipment I’ve ever used in physical therapy,” adds Wallace. People using the pacers have to work. They are physically strenuous to use. The resulting health benefits are many; including improvements with scoliosis and digestion, as well as elimination of pressure sores and poor circulation, just to name a few. “Simply standing up can be amazing for some people. Using a pacer really helps with certain skills. In some cases, participants can keep skills longer or even get them back,” relays Schulz. The MOVE Program aims to teach functional skills while people are doing the activities that they love, like painting, cooking, bowling, art, basketball, Zumba, yoga or drumming. Walks out in the community are also popular. With sitto-stand, stand-to-sit skills and walking reinforced, some participants are able to use public restrooms utilizing a handicap bar, which leads to increased opportunities for inclusion in the community. Wallace confides that there is rarely a week that she doesn’t cry happy tears that accompany a milestone. “Something magical happens when someone realizes
Tad enjoying a walk in his community
Using a pacer brings some apparent physical changes. Some participants have lost up to 20 pounds. Other changes may not be immediately noticed. “Going from wheelchair to being up and walking can change a person’s personality. Some folks used to be shy. Now they share their opinions; advocating for self, others, and making new friends,” stated Wallace. “One gentleman in the program had some challenging behaviors prior to starting in a pacer. After some training, he’s a totally different person now. He has no behaviors now. He’s a delightful person,” said Wallace. Staff are required to complete special training prior to assisting participants in the MOVE Program. “The rewards for the work are immeasurable. The outcomes for people using the pacers truly stand alone,” stated Wallace. For more information on The Arc’s MOVE Program, contact 805-650-8611 or email Holly Wallace at hwallace@arcvc.org.
Graceful Expressions: One Young Woman is Changing Minds Through Dance by Steve Crusinberry
Jessica poses before integrated dance performance
As the auditorium lights dim, the elegantly costumed dancers glide across the stage with delicate grace. At first glance, you might not notice that one of the dancers is using an electric wheelchair; that dancer is Jessica Clay. Jessica has been dancing since age 9 and although she has many other interests, dance is her true passion. Jessica loves to dance for a number of reasons: exercise, creative self-expression; but she also sees it as an effective means of communication to induce social change and to modify perceptions about people with disabilities. Dance has been a form of expression throughout human existence. Archaeologists have found evidence of dancing dating back over 9000 years. Some believe that dance was used as a form of communication and storytelling before the invention of written languages. This long, rich tradition of dance as expressive, communicative movement carries forward to present day. Jessica sees dance as an excellent method to communicate emotion, thoughts, ideas and beauty. After already earning three Associate of Arts degrees at Ventura College, Jessica is currently in her junior year at California State University Channel Islands. She is double majoring in Performing Arts/ Dance and Political Science. “The reason I am double majoring is so I could create
The dance program at college that Jessica participates in is ‘integrated dance’ including dancers with and without disabilities. She regularly performs throughout southern California and has performed as far away as Texas and Washington D.C., winning a variety of awards. Jessica participates in a number of dance styles including Jazz, Modern and Lyrical dance and she enjoys them all. She has even choreographed her own dance routines. This can be especially challenging since you not only choreograph the timing and movements for the dancers but also for a 400 pound wheelchair that has its own timing. Public outreach is very important to Jessica. She has performed for a variety of fundraisers, raising money for everything from schools to cancer research, often performing in large 1500 seat theaters reaching a diverse group of people outside the dance community. Her Mom, Terri Clay, recalled “When people see her perform, they might expect something cute or stereotypical, but instead they see something really beautiful that they weren’t expecting and that is the most rewarding thing.” Dancing as part of an integrated team is a fabulous teaching tool not just for the audience, but also for the dancers themselves. The dancers without disabilities meld their technical dance maneuvers with Jessica’s wheelchair to create a very fluid, concerted unit on stage, everything working in harmony together. The other dancers may even stand on the wheelchair during the dance, incorporating it into the routine. “This can be challenging sometimes” according to Terri “but it really promotes understanding and is a wonderful learning experience for all of the dancers.” “With integrated dance, everyone on stage is just another dancer, everyone is equal” said Jessica. “With integrated dance, there are no boundaries and no barriers.” Breaking boundaries and barriers is a primary focus for Jessica and she feels that
dance is an excellent means to that end. “I try to communicate a certain message to my audience in my dances,” recalled Jessica. Her message is that “everybody should be equal, no matter their disability or any other feature that might make them a minority.” So far, Jessica’s message has reached people. Often after performances audience members will approach her saying that they didn’t know how she could possibly dance, but after seeing her perform, they “get it.” Jessica is very open to people’s questions and does her best to try and connect with her audience. “I’m not saying that I have changed everyone’s opinion in the audience [after a show] but even if I changed one person’s perspective that would be good," stated Jessica. “ I want to try and change people’s outlook on individuals with disabilities. Just because you are in a wheelchair, or have another disability, doesn’t mean that you can’t be a dancer or have another dream come true.” Jessica’s future plans are to finish college and continue to use the creative arts to further her message of social justice and equality. It takes courage to go out on stage in front of an audience for all of us, perhaps even more so for people who may be differently abled. But Jessica has met that challenge head on and hopes to continue to be a voice for people with disabilities and lead by example. “Through my dance, besides creating social change, I want to show people that there are no limitations and that people can achieve anything as long as they set their minds to it."
Photo Credit: Taylor Brown
Photo Credit: Stephanie Hogue
some much needed social change through my dance,” recalled Jessica. “I am majoring in Political Science so I could educate myself a little more on everything including social issues.”
Assisted Arabesque
Spring 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 | Spring 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 8TH ANNUAL DSASBC BUDDY WALK AND FESTIVAL Saturday, June 17, 2017, Chase Palm Park Great Meadow, Santa Barbara – Volunteer, Fundraise, Sponsor. Contact Melissa at (805) 886-4411 or Melissa@dsasbc.org 8TH ANNUAL HOE DOWN DINNER DANCE PARTY - OCTOBER 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 2018. 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 INCLUSIVE CHEERLEADING! Challenger Cheer-leading - Inclusive of children and teens of ALL abilities to learn
cheer, dance and stunts for community performances. Instructed by local Cheerleading coaches/camp instructors. Spring and Fall; Fees: $35 per child includes practice uniform and pom poms. Call 805-2843896. Organized by college students and community volunteers. SHAKE RATTLE AND ROLL DANCE CLASSES Ongoing on Thursdays, 4:30 - 5:30 pm at the Carrillo Recreation Center, Santa Barbara. Drop in and join a session when you can - $10. per class. info@sbSNAP.org SB MOPS = MOTHERS OF PRE-SCHOOLERS Every other Thursday during the school year from 9am to 11:15am – Shoreline Community Church SB. Keep track of current MOPS activities or learn more about our group! http://sbmops.weebly.com CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE) Nov 6, 2016 - Jan. 28 2017-; 10 am - 11:30 am at Bishop Diego High School in Santa Barbara : Volunteers coach and buddy your child to enjoy the sport thrill of Flag Football (non-contact) OR Cheer leading basics at same time and 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 CHALLENGER BASEBALL FOR ALL: Ages 4 and Up - Teams for Kids, Teens, and Adults with disabilities: Locations in Thousand Oaks, Simi Valley, Oxnard, Ventura, Carpinteria, Goleta, Lompoc and NIpomo. All skill levels welcomed. T-ball, Coach-Pitch or Skill Development Teams; Peer and Volunteer buddy support provided, Wheelchair users included, Saturday games, no weekday practices. Fall and Spring Programs offered throughout the county 805/899-3475; www.GoChallengers.org OR www.sbSNAP.org MONSTER BALL Monster Ball is an Annual Fall themed Sports Event for those with special needs and their families features MONSTER Sized Balls used for volleyball, kickball, baseball, basketball games. Hosted by Challenger and UCSB Gaucho Baseball on a weekend every Octo-
Santa Barbara County ber: Great FUN, Exercise and Goodie Bags!. Details can be found online at sbSNAP.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 INDEPENDENT LIVING SKILLS BOOT CAMP Summer 2017, 10am to 3pm, Mon - Fri, for young people ages 14-22 with developmental disabilities. Week long sessions, $250, register for 1 week or more! santabarbaraca.gov/register, 805-564-5421.
www.allforanimals.org, (805) 682-3160 BEST DAY AT LEADBETTER BEACH 2017 8:30 am - 1:00 pm: Leadbetter 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. http://www.bestdayfoundation.org/locations/santa-barbara-county-ca
SANTA BARBARA COUNTY
SAND AND SURF DAY August 2017. Learn to surf, kayak, and boogie board. info@asasb.org Contact Cathy Abarca. 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.
JUNIOR WHEELCHAIR SPORTS DAY CAMP By Cottage Rehabilitation Hospital July 11, 2016 to July 15, 2016, UCSB Recreation Center, SB. For youth athletes ages 6-19 with physical disabilities who use a wheelchair or could use a wheelchair to participate in sports such as basketball, rugby, tennis, swimming, racquetball, climbing wall and MORE! Camp provides recreational and competitive opportunities for all the athletes. Contact Rene Van Hoorn at 805-569-8999 x82102 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 library program is free. Spring 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) Meets 2nd Tuesday 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 8:30pm in Oxnard. Location varies, please 10 | TriLine | Spring 2017
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. Do something for yourself as the weekend starts. Join other parents and caregivers to share the joys, concerns, and sometimes unusual humor that come from raising a kid with special needs. Other parents are an amazing source for information, strategies, and resources. Registration required. COFFEE & CONVERSATION (ENGLISH) Meets 1st Thursday of the month 8:45 am to 9:45 am at the Coffee Bean & Tea Leaf, 824 Arneill Rd. Camarillo, CA 93010. Parents and family members of kids with special needs stop by for a cup of coffee or tea and we can share the ups and downs and sometimes strange sense of humor in our lives. *We plan on being there but life happens so please confirm at 805-288-2544 or E-mail: rainbow@tri-counties.org ADULTHOOD (22 YRS THRU LIFE, TCRC PERSON SERVED): THE JOURNEY CONTINUES “SPECIAL FAMILY NETWORK” (English) Meets 2nd Tuesday of the month from 7pm – 8:30pm in Oxnard. Location varies, please call for details. 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. 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 3rd Tuesday of the month 11:30am –
1pm at Dolores Park in Fillmore. 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. SANTA CLARA SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30am – 10am at Mill 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. “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30am – 10am 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) 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 with the people who will be interacting and working with your child (teacher, aide, therapist, etc.) Give us a call and we’ll help you put together your child’s very own One - Pager. Individual Appointments can be scheduled upon request. For persons receiving services from TCRC. THE IEP BASICS (ENGLISH OR SPANISH) *Individual Appointments can be scheduled upon request. 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. 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. OTHER COMMUNITY SUPPORT GROUPS Contact the following groups directly. ACTIVITIES THE AKTION CLUB OF SAN BUENAVENTURA The Aktion Club of San Buenaventura is sponsored by the Kiwanis Club of Ventura and The Arc offering opportunities to form friendships and develop leadership skills through volunteer work and projects. The Aktion Club meets at 5:30 p.m., the first and third Thursdays of the month at Pizza Man Dan’s on Santa Clara Street, Downtown Ventura. The meeting is free and some members stick around to socialize and chip in $5 for 2 pieces of pizza and a soda, or purchase their own meals off the menu. There is no support or transportation provided. 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. Optional pizza dinner afterwards. Contact Sandra Blackwell (805) 583-2610 or sandba@aol.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. 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. Contact Maria Sandoval at
Ventura County
805 385-8019 or 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 info. (805) 381-2739 or http://www.crpd.org/parkfac/ therapeuticrecreation/default.asp FRIENDSHIP CIRCLE Designed to foster relationships between 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 info. (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 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. http://www. autismventura.org/events/ ASAP: ASPERGER’S SUPPORT ADOLESCENTS PLUS! (ENGLISH) A social support group for teens and young adults with Asperger’s or High-Functioning
Autism. More at http://www.vcasap.org or contact Founder, Troy Corley 805 419-9934. VENTURA COUNTY AUTISM TALK ON FACEBOOK 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. Ventura County Autism Talk on Facebook https://www.facebook.com/ groups/1636384583315658/ Ventura County Autism Talk on Yahoo Groups - https://groups.yahoo.com/neo/ groups/venturacountyautismtalk/info
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 805796-7683, joelig17@gmail.com or https:// sites.google.com/site/socalfas dnetwork/ SUPPORT FOR ALL SPECIAL NEEDS PAUSE4KIDS INC PAUSE4kids provides information, support and services for residents of Ventura County and nearby areas. Learn more at http://pause4kids.org/ or call 805-497-9596. SPECIAL EDUCATION ADVOCACY ASSISTANCE is 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- 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 (Continued) Spring 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.
children with special needs. For information please Contact: Scott Council, Military Liaison for Special Needs, at (805)982-2646 or scott.council.ctr@navy.mil SPECIAL PARENT’S CAFÉ An informal group of parents of children with special needs who meet to share information, take a break and make new friends. Contact Silvia at (805) 265-611 or email: spc.moorpark@gmail.com 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 brings
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, contact Susan at susan@baukus.net 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
Grover Beach PHP Library (Open by Appointment), 940 Ramona Ave, Suite M, Grover Beach
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/
MAKE & TAKE Does your child receive behavior or speech services? 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. Monday, May 15thfrom 9:30—11:00am by appointment. PHP 940 Ramona Ave, Suite M, Grover Beach. RSVP to 543-3277 or php@ucp-slo.org
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 | Spring 2017
PHP SPONSORED EVENTS **For ALL PHP events please RSVP to php@ucp-slo.org or call 543-3277.
PARENTS OF YOUNG ADULTS WITH DISABILITIES SUPPORT GROUP Come and talk about the transition out of school, SSI, independence, social opportunities and more. Once a month, next meeting: Tuesday, May 16th, 10:30-11:30 am @ PHP Library, Atascadero. Call PHP Atascadero with questions: 461-7415.
GET CONNECTED AT PARENTS HELPING PARENTS Come find out about the resources and staff available at our libraries in SLO and Atascadero – Join us Wednesday, May 10th in Atascadero, or Thursday, May 11th in SLO from 11-12 am for informal discussion or help with your specific questions. HOW TO HELP YOUR CHILD GROW Join Kelly Andrasik, MOT, OTR/L, SWC from Lucile Packard’s Children’s Hospital Stanford for a presentation where parents will have the opportunity to explore typical and atypical feeding development in infants and children. This event will cover strategies to overcome challenges including struggles with bottle feeding, toddlers and picky eaters, or behavioral struggles at dinner. This event will be held on Saturday, April 8th from 9:00am-1:00pm at the Elks Lodge in SLO: 222 Elks Lane. A continental breakfast is provided! CHILDREN'S DAY IN THE PLAZA Come celebrate the 39th annual Children’s Day in the Plaza, which recognizes April as the National Month of the Child and Child Abuse Prevention Month. Partnered with Passport to the Arts, SLO County Child Care Planning Council will provide hands-on visual, literary and performing arts activities, as well as interactive booths provided by the community. Don’t miss out!
Saturday, April 8th at Mission Plaza in downtown SLO and Saturday, April 22nd at Atascadero Lake Park. If you have any questions, please feel free to email ccpc@capslo.org or call (805) 782-4723. UCP SPONSORED 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 Our CIP Tour will travel to Disneyland or California Adventure! An annual outing at the Happiest Place on Earth! Departure is May 20th, and we will be returning on May 22nd! This month’s Leisure Club will be a hoedown at The Ranch! Join us for food, fun, and games! May 13th from 1:00-4:00pm at The Ranch: 875 Laureate Lane. For more information about these and other events, contact UCP at 543-2039. 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. 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
LOCAL EVENTS 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 5:30-6:30 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 CENTRAL COAST AUTISM SPECTRUM CENTER (CCASC) Does your kiddo get overwhelmed at our local Children’s Museums in Paso and SLO? Consider attending one of the monthly sensory nights – designed to make your kiddo more comfortable—it’s free! This month’s sensory night is on May 13, 2017 @ 5:15 pm-7:15 pm. RSVP to Tyler at 805-715-4484. This month’s event highlight is the Walk for Autism and Awareness Fair. Walk through downtown SLO in support of individuals with autism and acceptance in our community. There will be child friendly booths and activities! To participate, sign up at www.grouprev.com/sloautism. For questions, email contact@sloautism.org or call (805) 763-1100. Check out CCASC’s events calendar for more information on a variety of other programs they have to offer- http://www. sloautism.org/resources/#calendar. A couple of the other upcoming March events include the Children’s Museum Autism Night in Paso Robles and a gymnastics day at Central Coast Gymnastics!
child’s skills for school and where to go for fun, free, family activities. May 10th, 6:30 – 8:00 pm. *snacks and childcare provided* First Presbyterian Church, 981 Marsh St. San Luis Obispo (*call 471-7529 for childcare) 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, basketball, line dancing, and their newest feature, Broomball! Swimming is held at the Atascadero Kennedy Fitness in the indoor pool: Mondays from 6:00-7:00pm. Broomball is held on Thursdays from 6:00-7:30 at Colony Park Community Center. Check the calendar on the Website: http:// ncasarp.org/ Contact email: info@ncasarp.org
SAN LUIS OBISPO COUNTY
San Luis Obispo County
FAMILY TIES SUPPORT GROUP Are you caring for another relative’s child? Then you are a “Kin Caregiver”. Kinship Center has three groups meeting monthly – 2 in North County and 1 in South County. Contact: Marta Nielsen at (805) 434-2126. 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 SPRING REGIONAL GAMES Special Olympics SLO County’s annual games are here again! Come support the athletes as they compete for gold in basketball, swimming, and many more! Friday, May 5th from 9:00am-3:00pm at Cuesta College. For questions, please contact Kenna Shannon at kshannon@sosc.org.
LEARN.CONNECT.PLAY.PRESCHOOL Lively, interactive, hands-on parent education classes. The May session will focus on using summer activities to enhance your Spring 2017 | TriLine | 13
What Drug Is Best For Treating Hyperactivity In Autism Spectrum Disorder (ASD)? by James O’Hanlon, Ph.D., Psychopharmacologist Children with ASD are commonly hyperactive. This symptom is disruptive at home, limits learning in school and interferes with behavioral therapy. Of course many typically developing children with the diagnosis of Attention Deficit/ Hyperactivity Disorder (ADHD) present the same symptoms, which besides physical restlessness include deficient attention, distractibility and impulsivity. On the basis of appearances, many think that the cause of hyperactivity is the same in both disorders and therefore efficacious medication in one should be as efficacious in the other. Appearances can be deceptive. Trials of three drugs approved for treating hyperactivity in ADHD were recently undertaken with individuals, aged 5-17 yr., who suffer from ASD. Collectively, the results indicate that drugs approved for managing hyperactivity in ADHD are not always appropriate for treating the same symptoms in ASD. Drugs approved in the USA for the treatment of ADHD include various amphetamines (Adderall, Vyvanse, others), methylphenidate (Concerta, Focalin, Ritalin, others), atomoxetine (Strattera) and guanfacine (Tenex, Intuniv). The amphetamines need not concern us here. The last assessments of amphetamine in children with autism were made in the late 1970’s. At that time autism was thought to be a psychotic disorder and amphetamines were said to cause a “worsening of psychosis”. The drugs also exacerbated hyperactivity in the majority of children treated. The results were so daunting that no one wished to pursue studies of amphetamine in the ASD population. But amphetamines are pharmacologically unique and drugs with different mechanisms of therapeutic activity are now available for treating ADHD. The question of whether the benefits of three of them – methylphenidate, atomoxetine and guanfacine – extend to ASD, has recently been answered in separate trials involving children with that disorder, aged 5-17 yr. 1 2 3 The methylphenidate trial was conducted in three stages. First was a sensitivity 14 | TriLine | Spring 2017
check wherein all 72 participants were given day-long exposures to each of three therapeutic doses. Six became agitated and dropped out. The remaining 66 children entered a double-blind, crossover trial wherein each dose and placebo was given for a week. Again, some children dropped out due to side effects and others did not respond favorably to any methylphenidate dose. The 35 individuals who responded favorably to one or more doses continued taking individualized “optimal doses” for the next 8 weeks. The atomoxetine and guanfacine trials followed a double-blind, parallel group design. Respectively, 97 and 62 children were randomly assigned to drug or placebo groups in approximately equal numbers. Atomoxetine doses were gradually increased over 3 weeks to maximum dose that continued over the next 5 weeks. A similar dose escalation was possible in the 8-week guanfacine trial but the progression could be reversed by returning to the preceding dose to cope with emerging side effects. Drowsiness, fatigue, emotionality or irritability led to dose reduction in 30% of the group with the rest going on to maximum dose. Statistical tests showed that by the end of the trial, each drug was “significantly” more effective than placebo for reducing hyperactivity. But statistical significance only means that the final mean difference between drug and placebo is unlikely to be due to chance. Another statistic, “effect size”, is of greater clinical relevance because it measures the magnitude of the mean difference relative to individual differences that existed prior to treatment. Effect size typically varies in drug trials from about 0.2 to 2.00, in practical terms, from a clinically irrelevant effect to an overwhelmingly strong indication of drug efficacy. Methylphenidate in the optimum dose and atomoxetine had similar effect sizes of about 0.9 - good but not exceptional. Guanfacine had an excellent effect size of 1.67. Another indication of efficacy is the relative frequency of individuals, called “responders”, whose reduction in target symptoms exceeds a standard criterion during drug treatment. Responder frequency was only 21% in the atomoxetine
trial but about 50% did in both the methylphenidate and guanfacine trials. The choice among alternative medications is not only determined from their respective efficacies. It also depends upon comparison of their side effect profiles. As generally defined, serious side effects range from those requiring temporary hospitalization to those constituting a threat to life. Most side effects occurring in clinical trials are mild-moderate in severity and abate as treatment continues. They are still distressing to the participants and in the present context, to their parents as well. The net cumulative effect of all side effects is said to reduce a drug’s “tolerability”. The simplest way to compare different drugs’ tolerabilities is from the respective percentages of individuals who discontinued treatment due to side effects. In these three trials, 18% discontinued methylphenidate, 13% guanfacine and 2% atomoxetine. One guanfacine side effect was judged serious: i.e., physical aggression of a 6 ¾ -year-old boy, requiring hospitalization for 3 days. Guanfacine emerged as the most efficacious drug for managing hyperactivity in children with ASD. Yet almost as much attention was given for adjusting guanfacine doses as for methylphenidate to achieve a balance between efficacy and tolerability. Neither drug can be effectively used without careful medical monitoring and dose adjustment. In contrast, atomoxetine was the least efficacious though well tolerated across its pediatric dose range. It is important to note that the same order of efficacy does not apply to typically developing children with ADHD. For them, methylphenidate (or amphetamine) is recognized as most effective drug for reducing hyperactivity, atomoxetine less and guanfacine least of all. It seems the pathophysiological processes that cause hyperactivity in ASD and ADHD are different. Research Units on Pediatric Psychopharmacology Autism Network. Archives of General Psychiatry 2005;62:1266-1274 2 Harfterkamp M et al. Journal of the American Academy of Child & Adolescent Psychiatry 2012;51:733-741 3 Scahill L et al. American Journal of Psychiatry 2015;172:1197-1206 1
New Discovery - Genetic Mutation Linked to Seizure-prone Brain, Autism by Steve Crusinberry
"Parents of children with epilepsy or autism spectrum disorder often ask 'what caused this to happen?'" According to TCRC Director of Clinical Services, Dr. Steven Graff "At long last researchers are zeroing in on the actual genetic mutation that can lead to either one of those conditions." A recent study of more than 4000 children with autism found that genetic mutations play a large role in the onset of autism. This is the strongest evidence so far of an actual cause for autism. The gene they are studying is common to all people and it is known as the SCN2A gene. If this gene changes or mutates it could lead to epilepsy or autism depending on the mutation. These mutations are spontaneous, meaning that they are not inherited from either parent.
Other recent studies have found that autism can often be detected using MRI brain scans in very early infancy, positively confirming that the MMR vaccine plays absolutely no role in the development of autism. The SCN2A gene that the UC San Francisco researchers were studying regulates a sodium channel protein that is critical for communication between brain neurons in early brain development. These sodium channels can experience a variety of mutations. If the mutation makes the neurons more excitable, this could lead to epilepsy while the mutations seen in children with autism spectrum disorder made it harder for the neurons to send electrical signals. Dr. Kevin Bender, a neuroscientist who participated in the study said “These findings solidify SCN2A’s status as one of the
most important genes in autism. They give us a place to start exploring exactly how changes in early brain development lead to this condition.” The next phase of this study is to determine whether the severity of autism or developmental delays can be predicted by which specific mutation the person has. *University of California-San Francisco. "Autism Researchers discover genetic 'Rosetta Stone': Opposing defects in a single neural protein lead either to epilepsy in infancy or to autism." ScienceDaily. ScienceDaily, 26 January 2017. www.sciencedaily.com/ releases/2017/01/170126083605.htm. The Scientist. February 17, 2017 http:// www.the-scientist.com/?articles.view/ articleNo/48524/title/Infant-Brain-ScansMay-Predict-Autism-Diagnosis/
Visit Disneyland at a Discount This Fall By Yanet Garcia, Receptionist
The Disneyland Community Involvement Program is an opportunity to purchase discounted admission tickets for people with developmental disabilities served by Tri-Counties Regional Center. Open enrollment runs from the end of August through the beginning of October. For more detail information on how to take advantage of this great offer, please contact your Service Coordinator during open enrollment.
New Directions Travel provides full and partial scholarships for trips to Disneyland throughout the year. Information is available on their website at www.NewDirectionsTravel.org or by calling the office at 805-967-2841.
PAC Committee Fundraises to Send Member to Supportive Life Conference by Heather Wennergren
Board member Tim Farrar was selected by the People’s Advisory Committee (PAC) to attend the Supportive Life Conference and share what he learned. TCRC matched the funds raised by PAC. He attended in October 2015. Mr. Farrar brought a few tips back to the committee. Some were around independence and how to do a job search. “It made me feel really good” Farrar recalled, “really responsible, like I was doing something good for the committee.” Executive Assistant Raquel Blanford adds, "When Mr. Farrar returned from the conference to share what he learned, it was like all the members of PAC attended. The experience was appreciated by the entire
PAC Committee." Another topic discussed at the conference was healthy relationships. Farrar took to heart what he learned, “I brought home a better understanding of things I needed to change in my life.” After making some changes, Farrar shared “I actually got myself a girlfriend”. Eighteen months later, the happy couple is still together. “I’m very happy to have Missy,” Farrar adds with a subtle nod, “she puts me in my place.” This was one conference he won’t be forgetting anytime soon. PAC is currently selling Carl's Jr. coupon booklets to raise money to support a PAC member to attend the Supported Life Conference in 2017.
Board member Tim Farrar with Missy & AngelBaby
Spring 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 federal funding for MediCal; this could have significant and deep effects on people receiving services. Changes in the Affordable Care Act may impact millions in California, including people served by the regional centers. The TCADD Board is charged with a broad scope and depth of responsibility. As the TCADD officers and board members convene our Board and committee meetings, we work with the dedicated staff and leadership at TCRC to ensure that people receiving services lead full community lives with safety and the maximum of independence. And, along with this focus on the delivery of services we continually educate ourselves around the funding climate determined by decision makers in Sacramento and Washington. The Governor’s proposed 2017 /2018 Budget that was announced on January 10, 2017 contains assumptions about the continuation of federal funding for individuals receiving care through Medi-Cal as well as the current structure of the Affordable Care Act. We know that there is a possibility of the reduction
Although the backdrop of uncertainty around federal funding is on our minds, we also are keenly aware of the recent legislation that provides for expansion of education, training and employment for individuals with developmental disabilities. It is so exciting to consider the availability of postsecondary Work Readiness and Career Planning Certificates in development on the central coast. And, we know that funding for paid internships and incentives to supported employment service providers will raise the bar for employment opportunities for people receiving services. I also find the articles in this TriLine around advocacy activities to be so uplifting and encouraging. We have made such a difference with advocacy efforts and strategic activities over the last decade. When my son first entered the
system, almost fifteen years ago, advocacy was considered to be important. However, we now realize that advocacy must be an underlying theme for family and individual planning, and in the broader sense, an assumption for strategic planning. I’m pleased about this trend, it gives me confidence and courage as we navigate the news of potential changes in funding. When the May revise of the 2017/2018 Budget is announced, this will be a time for mobilizing our message for advocacy. The issues will be more clear, allowing us to unify messages to our lawmakers. Be sure to follow the information that is on TCRC’s website, in the Budget Watch Section, at tri-counties.org. As we await further news about funding, also consider the progress we have made, especially in 2016 for improved funding, our celebration of 50 years of services in the community and the dedication and expertise of the staff and leadership of TCRC. That leaves me inspired for now.
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 & Steve 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
Rachel Huff
Vice President
Ryan Wilkinson Secretary
Tim Farrar, PAC Representative Sharon Francis VAC Representative Chris Correa Shirley Dove Diane Figueroa Mani Gaur Ada Gonzales Thomas Kline Howard Kraus Ralph Morales
2017 Upcoming Board Meetings May 6...........................10:00 AM (SM) June 3..........................10:00 AM (OX) July 8............................10:00 AM (SV) Sept 8.......................... 6:00 PM (SB) Oct 7............................10:00 AM (ATAS) 2017 Upcoming Town Hall Meetings May 24............................................ SV July 12........................................... SM Sept 20.......................................... OX Oct 11....................................... ATAS