TriLine Newsletter - Spring 2018 - English

A Publication of Tri-Counties Regional Center | Spring 2018

Cover Story 01 Start Your Engines - MOXI Ignites Learning for All! Featured Articles 03 Martistic: Mark Gonzalez, Entrepreneur, Artist and Small Business Owner 07 What is the SelfDetermination Program?

07 The ABLE Act and CalABLE 14 Bumetanide, a Diuretic, Reduces Core Symptoms of Autism: The French Connection 15 Ana Barranco and Kailani Gaspar, Walking the Walk 15 Holiday Kindness: Organizations Work Together to Create Special Meal 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.

Photo Credit: MOXI

Start Your Engines - MOXI Ignites Learning for All!

Kids race the cars they built at MOXI, then watch for scores

Interactive science museums offer hands-on exhibits with experiences in science, math, art, and technology - inspiring curiosity and learning for visitors. Many museums are striving to create exhibits that are accessible to people of all abilities.

The Children’s Museum in Pittsburgh offers a guide booklet for parents of children with developmental disabilities to preview the museum’s exhibits before a visit.

The Please Touch Museum in Philadelphia also provides a preview booklet for visitors with special needs. Other museums, such as Seattle Children’s Museum and Boston Children’s Museum have emphasized accessibility around “Sensory Sensitivity Hours” and ASL (American Sign Language) interpreted programs.

Santa Barbara was fortunate to become home to a new interactive science museum, MOXI, The Wolf Museum of Exploration + Innovation, in February 2017. MOXI’s approach to its community, whether it is our central coast residents, or an international visitor, is to ensure that individuals of all abilities and all backgrounds have access to enjoy their stay and be ready to come back for more learning and fun!

MOXI incorporates a state of the art approach to accommodate the special needs of people with disabilities through a progressive smart phone app, Access MOXI. continued on page 4 Santa Barbara | Ventura |

San Luis Obispo |

www.tri-counties.org

From the Executive Director

by Omar Noorzad, Ph.D. Our vigilance and advocacy around budget issues has led to some good news from the State. This January Governor Brown announced the annual State Budget Proposal for the new Fiscal Year, 2018-2019, with funding set aside for Developmental Services of $7.3 billion. In this proposal, Regional Center community based services are allocated $6.9 billion to support 333,024 individuals. This is a 4.8% increase for an additional 15,187 individuals to be served. The Developmental Services Purchase of Services (POS) budget is projected to increase by $329.9 million or 6.04%, and the Operations (OPS) budget is to be funded an additional $31.4 million, at a 4.7% increase.

The majority of this additional proposed funding will support caseload and utilization growth. Statewide, this will mean an additional $290 million in POS and $30.8 million in OPS. The proposed budget also provides for an increase of $178.5 million in POS funds to support the costs of the state-mandated hourly minimum wage increase from $10.50 to $11.00. This increase was effective January 2018; an increase from $11.00 to $12.00 is planned for January 2019.

The May Revision Budget for the new Fiscal Year may be impacted by changes in federal funding for our state. Potential reductions in Medicaid funding (Medi-Cal for California) and the impact of recent legislation around federal tax reductions, cuts and reform may require reductions in federal funding to the California state budget. These two issues could affect funding for Developmental Services, as well as Social Services, such as In Home Supportive Services (IHSS), Supplemental Security Income (SSI) and State Supplemental Payment Grants, (SSP.) Watch for calls to action via email around these issues.

The Uniform Holiday Schedule of 14 mandated days for which service providers are not paid is being proposed to be re-implemented as of July 1, 2018. This policy was originally put into place as a cost savings measure in 2009 and will in effect result in a 2 | TriLine | Spring 2018

rate cut for our service providers. Direct service professionals may end up with unpaid days off from work. Individuals receiving services may be forced to find other means of support such as family members who in turn may need to take time from work.

The advocacy community including the Association of Regional Center Agencies (ARCA) is opposing the implementation of this measure.

Reimbursement for our service providers is an ongoing issue; last year ABX 2 1 included recommendations for a rate study to be conducted and the recommendations presented to the legislature by March 1, 2019. A contractor, Burns and Associates has been selected by DDS to analyze service provider rates, part of which will include surveying a representative sample of service providers around the costs of their service delivery. In the meantime while the rate study is underway, a request for bridge funding of $25 million for service providers is currently being drafted by Assembly member Chris Holden (D-Pasadena). The funding is intended to pay for increases in labor, housing, leasing and fuel costs for service providers. This request will be vetted through the FY 2018 - 2019 budget process and is receiving broad support from all stakeholders in the advocacy community.

On other fronts, we hosted the 10th annual California Gathering in Camarillo last October. Attendees joined from across the state to share learning around Person Centered Practices. This special opportunity will now be more accessible for our neighbors up north. Northern California regional centers are hosting a similar event in their area. TCRC will host the next Southern California Gathering in 2019, on an alternating annual schedule.

The state is making good progress on the implementation of the Self-Determination Program. Senate Bill 468 established this program in 2013. As the approval process has been underway, the Self-Determination advisory committee has organized several informational meetings to share this program with stakeholders. Participants will be randomly selected by DDS to join an extended pilot and eventually the program

will be available to any interested, eligible person. To get on the list, be sure to attend an informational meeting. Additional informational meetings will be announced. Join our email list for updates at bit.ly/joinTCRC. This year is our planning year for the 2019-2021 Strategic Performance Plan.

We surveyed our stakeholders for input to develop plan Focus Areas. We also gathered input during six community meetings conducted this Spring in all three counties.

We asked for input around the existing Focus Areas of the current Plan (2016-2018): Family Support, Employment, Specialized Healthcare and Cultural Competence. We also asked if adding a Focus Area around Self-Determination would be beneficial. A strategic plan offers the opportunity to create action plans around topics identified as important to individuals we serve. We strive to not only meet the requirements of our operational plan, including performance contract measures with DDS, but also create action plans around these topics.

We set goals and targets that challenge us to exceed expectations in pursuit of our mission and vision.

The Thomas Fire and subsequent mudslides dramatically impacted the counties of Santa Barbara and Ventura. These natural disasters tested all systems in the two counties to protect people and property. Throughout these ordeals, TCRC management worked all hours of the day and night with our service providers, as well as transportation providers, first responders, shelters, state offices and other supports to ensure the safety of individuals served by TCRC. Thank you to all of our community partners who helped during this very trying time for our community. As we weather fires, mudslides and floods, the true character of our community comes to light. The values and commitment of our staff, service providers, Board and stakeholders has been tested and held steadfast. The evidence of kindness can be seen throughout our community of which I am proud to be a part. I encourage you stay current with local and system-wide news by visiting our newly redesigned web site, www.tri-counties.org.

Martistic: Mark Gonzalez, Entrepreneur, Artist and Small Business Owner

by Nancy Black

“Mom, I made you an elephant.”

Lorena Hernandez says that her son Mark Gonzalez has always been making his creations, creatures and figures. “My coworkers ask him to create figures for them,” she smiles. “That’s evolved into a small business that we call ‘Martistic’, for Mark, autism and artistic.”

He takes it from there. “I live in Oxnard, and I’m 19. I go to Channel Islands post secondary school. When I was three, mom brought home my first Magic Clay (a kind of sculpey clay). I started creating animals. I realized that I wanted to sell my creations online,

and so I’m starting a business. Sometimes I imagine... what comes out of my head I make into sculptures, to make them real.

I like superheroes. I like doing my own heroes. I love how superheroes fight injustice and fly and always look out for each other. I think Batgirl might be my favorite.”

Lorena adds, “The first time he made a creation he was only three. He made it out of gum. He said, ‘Mama, elephant.’ So I went straight to 7-11 and got him another pack of gum and he made me a giraffe.

I’ve always thought that his store could be named, ‘Mom, I made an elephant.’”

“He created this band of superheroes,

called ‘HOPE’,” she went on. Mark elaborated, “It stands for ‘Heroes of Planet Earth.’

They protect everyone against bullies.”

“He drew them and then made them in clay,” Lorena explains. “He loves to create his own heroes. He does copy what he sees, and he has a main character, Thunder Lizard; it’s a lizard who dresses like a man.

He’s really cute.”

Lorena smiles at Mark. “I’ll put the pictures up on the Facebook page. Mark has a hard time with the keyboard. He goes to Kindling Art Studio, Channel Islands, in Camarillo. They’re supporting him to develop an Etsy store. To begin with, we’ll sell his figures on the Facebook page. We made a few stop motion videos too.”

Mark imagines the possibility that his work will inspire people “to create something and make something that they’ve never created before.”

“I like people to see my art,” he says. “I like seeing people excited when they look at my art.”

Learn more about Mark's work and view his creations on Facebook at markgonzales.

Mark spends his creative time at Kindling Studios, learn more about their Camarillo art studio at www.kindlingstudios.org.

Spring 2018 | TriLine | 3

Start Your Engines - MOXI Ignites Learning for All!

...continued from cover

by Patricia Forgey

Father & son approach the Giant Guitar

The Giant Guitar is playable with its substantial string combination ready for striking and the interior (you can go inside) is an informal lesson in sound.

“Our mission is to ignite learning through interactive experiences in science and creativity,” states Ron Skinner, MOXI’s Director of Education. Talking with Ron, and Martha Swanson, Director of Marketing and Communications, has the MOXI flow of lively interaction and enthusiasm. Seated in a meeting room, completely in synch with the MOXI experience, beautifully bright with comfortable orange chairs positioned for a view of the mountains, both staff members shared their experience of bringing the dream of MOXI’s community of originators, over twenty years ago, from an idea to reality.

MOXI celebrated its one-year anniversary on February 25, 2018. The opening 4 | TriLine | Spring 2018

Photo Credit: Jason Rick

day in 2017 surely was a long awaited moment by the community volunteers, founding Board members, businesses, and foundations.

MOXI from State street in Santa Barbara

An exciting atmosphere of exploration and play awaits people of all abilities at MOXI. Each visit is a chance for different experiences in the interactive exhibits of the Tech Track, Light Track, Muzzy Family Speed Track, Muller Family Sound Track and Interactive Media Track. Add the McMillan and Kenny Families Fantastic Forces Courtyard and the Levinson Family Sky Garden for outdoor fun and there are many choices and ways for families to guide their children’s time at MOXI. Sensory input in all modalities at MOXI is a delight, offering informal science learning that can also be managed, for a diverse experience.

MOXI app home screen and sensory map

images offer a break from interactive play and Social Guides provide content about the best way to be and act while enjoying all of MOXI’s exhibits. The Access MOXI app offers people a unique way to prepare for a great visit. A reminder from a parent about the schedule of events, a useful and important way to make needs known for an individual with communication disabilities, or a MOXI game to play in a quieter corner in an outdoor area can all be supported by this app.

A visit with a person served by TCRC, Jared Eichelberger, gave real time insight into the benefit of the Access MOXI app and a chance to see the museum through the lens of an individual with disabilities. Jared is a young adult with autism. As he entered MOXI, Jared was delighted with the possibilities to explore. We headed right upstairs to the Build It, Test It, Race It exhibit.

Photo Credit: Patricia Forgey

Photo Credit: MOXI

Entering MOXI on a rainy Friday afternoon, I was anticipating the many exhibits that I had learned about on the web site, www. moxi.org. “Learn“ is the operative word for this unique immersive environment of the seven themes of MOXI: Technology, Sound, Forces, Speed, Light, Interactive Media and Natural Elements. The focus is on the exploration of science, technology, engineering, arts and math. It’s a welcoming vibe; enter the space and you are “there.”

A scan of the main floor is an immediate kaleidoscope of color, tempting interactive exhibits, a view into two outdoor spaces, and an initial inviting exhibit, the Giant Guitar. The Giant Guitar is massive at twenty-four feet long and eight feet tall!

MOXI partnered with internationally respected firms to develop exhibits to explore how all people, regardless of ability and development, can authentically enjoy and benefit from this space.

The Access MOXI app was developed to support people in planning their visits. The app helps prepare for the learning experience in each space. A schedule of indoor and outdoor exhibits can be selected, ensuring that people who experience sensory stimulation more intensively or differently than others can fully enjoy their MOXI visit.

For those who are non-verbal, the app has symbols that activate a verbal request with a simple touch. A Sensory Friendly Map provides locations for quiet, loud, tactile and bright areas. Games with MOXI

Jared with Support Staff Caroline

UCSB Media Artists will offer time limitedexhibits, with new experiences regularly being installed. We entered “Reflections.”

Touching screens with infrared sensitivity, on a Thermal Gestures textile, Jared created patterns with his hands. Turning to an exhibit, “Connections,” we were surprised to see our own silhouettes on the massive screen in front of us!

The Sensory Friendly Map on the app offered features to support our decisions about Jared’s journey through MOXI. We

MOXI: In-Depth Discussion on Accessibility

Studying the impact and effectiveness of the app, considered to be in a pilot stage, is important to MOXI. There are initial discussions for collaboration with University of California at Santa Barbara’s Koegel Autism Center.

Ron shares, “We have learned already that disability and ability are on a spectrum. We are striving to understand more about the many facets and impacts of living with disabilities." The next series of classes for staff at MOXI will be around the learning styles and supports for children with autism. Ron continues, "Our staff training program is raising awareness around accessibility and disability.”

MOXI strives to create mutli-sensory exhibits. Ron says, “As we ensure

decided to go to the third floor Sky Garden to take a break from the excitement of the interior space. The beautiful rooftop with views of Santa Barbara and the mountains offered just the break we needed. Jared experimented with the Weather Orchestra, moving objects that are powered by wind, sun and humans!

We could see the Towbes Family Lookout

“When we think about making MOXI an environment for everyone,” Ron states, “we also are aware that socio-cultural aspects of our community must be considered.”

Martha adds, “I’m sure that you noticed that all of our signage is bilingual for English and Spanish.” I must admit, I was brought so far into the technological stimulation of MOXI with my first approach to the exhibits, that I was not looking for written or even verbal instruction. This is not accidental. The environment is intended to be engaging and stimulate individual responses and exploration.

MOXI consulted with Story Teller Children’s Center, a therapeutic preschool for homeless and at-risk toddlers, to understand the context of the life of a young homeless child. Striving to be inclusive of all children and families, such as those with limited financial resources or those who are underrepresented, MOXI’s staff intends to continually evaluate the full integration of all people into their services, and as visitors to the museum.

“Our ‘industry’ of science and technological museums is absorbing the need for ensuring awareness of socio-cultural diversity in a variety of ways," Ron continues. “The Fleet Science Center in San Diego is taking the museum into neighborhoods where cultural norms don’t support making museum visits. We are noticing that trend.

And, we know that we must provide for visits from children who have financial challenges. No one should be turned away from MOXI.” Accommodating for people with disabilities and of communities where socio-cultural norms don’t intersect with museum membership is not a trendy or quick learning curve in MOXI’s organizational culture. “We really do want MOXI to be for all people - especially for people with accommodation needs,” Ron adds.

“We want to ensure that we have an understanding of what is in the front of the experience of a person with a disability when they enter MOXI, and we want everyone to leave, with every visit, wanting to come back to keep exploring and learning.”

Photo Credit: Jason Rick

Ron adds, “We want accessibility to be an important and ongoing topic of conversation for our staff, how we organize our space, how we create our programs, and how we facilitate the learning experience.”

A training program for staff around greeting, supporting and ensuring a full learning experience for people with disabilities is underway. Staff has monthly classes around selected topics regarding accessibility. Staff training and the development of the Access MOXI app were funded through a grant from the Henry Peterson Foundation.

accommodation for those with special needs, we are continually considering how our exhibits are accessible for interaction.

All of the exhibits are multi-sensory and have multi-entry points for people of all capabilities. There are multiple potential learning outcomes. For example, the Giant Guitar, a prominent centerpiece on the main floor, has many potential experiences. A visitor can play it and feel the vibrations. You can go inside the Giant Guitar and when you are inside, you can see the strings moving, you can put your hands on the walls, feel the vibrations.

That’s multi-sensory.”

Photo Credit: Jason Rick

“We are a museum of innovation. We can’t see any barriers - - no challenge is too big.

Because we have a directive to innovate, if we run into some barriers, we are going to think outside of the box," explains Ron Skinner, MOXI’s Director of Education.

Levinson Family Sky Garden

Spring 2018 | TriLine | 5

Start Your Engines - MOXI Ignites Learning for All!

...continued

by Patricia Forgey

Photo Credit: Patricia Forgey

Their job is to spark learning and to facilitate interaction with the many exhibits.

Jared at the Handprint Globe

Photo Credit: Patricia Forgey

Jared finished his visit with the Handprint Globe and the Sound Machine on the first floor. For both exhibits, there are many options for interaction. Jared placed his hand on a screen to view the image on a multi-color globe and was intrigued with the moving objects in the sound machine.

Jared intrigued by the Sound Machine

MOXI not only plans for accessibility, they hire staff with disabilities. Chris Benedict works for MOXI as a "Spark", facilitating exhibits for museum guests. Chris, also a local DJ, loves his job, "I have three roles at MOXI, I spark learning for guests, I play music for evening events, and I teach community members about the lives of people with physical disabilities.” Chris explains, “I have cerebral palsy and it is difficult for people to understand my speech. I repeat what I say and it works!”

Floor Sparks are the “sparks of the flame, supporting the mission,” Ron Skinner adds.

6 | TriLine | Spring 2018

MOXI's inclusiveness also extends to its volunteer program. According to Ron, bringing on staff and volunteers with disabilities has “added tremendously to our staff’s understanding and awareness that all individuals experience this space differently, according to his or her unique lens." This comment from Ron revealed how MOXI's philosophy around an integrated environment has evolved from staff's conclusions that disability is on a continuum and that indeed, all individuals are unique.

And, in fact not only is MOXI pursuing the development of a uniquely accommodated environment for accessibility, MOXI is also the training ground for facilitating informal science learning. Ron shares, “Clearly MOXI is a fantastic place for making broad changes. We have collaborated with UCSB to develop an apprentice program in facilitating informal science learning.“ “We are studying how informal science learning is best facilitated, how we can best encourage learners to engage in the practices of scientists and engineers. We are on new ground. We are conducting a study of our industry around facilitating informal science learning for community uses, and we are trying to build consensus around important facilitation strategies. These strategies are taught in our apprentice program. The apprentices are students, graduate students, or those who have an interest in education.”

Marcia Eichelberger, parent and President of the Autism Society, shares, “I appreciate MOXI’s commitment to accessibility.

On Jared’s next visit, he will continue to explore exhibits, with the help of the Access MOXI app. The communication icon feature on the app is a great snapshot version of Proloquo2Go, the technology Jared uses for communication." Jared and his Support Staff, Caroline Hollister, will help improve the app by providing feedback.

When asked 'What are you most proud of so far?' Ron answers instantly, “We have had over 200,000 people visit MOXI and leave our door with a smile, or crying because they do not want to leave! Visitors have come into our space and they immediately 'get it' without our telling them.

Our Sparks have assisted visitors through the informal science learning process. As we observe people of all abilities engage with our exhibits, we know that we are really serving our community.”

MOXI was named one of the World’s 10 Best New Museums by Fodor’s Travel, in July 2017. For all people regardless of developmental level, our community now has a world-class interactive science museum. Enjoy MOXI everyone!

An important component of the apprentice program is accessibility. “If we are going to facilitate learners, we have to understand how they learn, who are they, what their abilities are, and how they interact," Ron explains.

The Apprentice program is a year-long commitment. Work experience as a Spark and coursework at MOXI, through UCSB extension, results in a Certificate in Informal Science Education.

Photo Credit: MOXI

Tower with five different observation scopes — a periscope, a thermal imaging lens, a telescope for viewing the city up close, a kaleidoscope, and a LIDAR scope, that measures wind and targets distance.

Ron Skinner, Chris Benedict & Kaia-Joye Moyer of MOXI

What is the Self-Determination Program?

by Cheryl Wenderoth, Assistant Director of Federal Programs The Self-Determination Program allows for individuals receiving services and/ or their families to have the freedom to control and select the programs and services that support the goals in their IPP (Individual Program Plan.) Tri-Counties Regional Center has been a pilot regional center for over twenty years; there are currently 14 individuals in the original Self-Determination Program at TCRC. “As part of the original pilot program for Self-Determination, my daughter and our family have been able to access services, equipment, and opportunities that would otherwise have been out of reach for her,” states Louise MacKenzie. “These self-determined options have allowed her to live a full life in our community, a life with friends and family and activities that matter to her. Self-Determination begins with person centered planning and is a way to organize and plan your life for maximum enjoyment, meaning, and fulfillment.”

In 2013, Senate Bill 468 established the Self-Determination Program to be implemented statewide. The Department of Developmental Services (DDS) then

submitted the required application to the Centers of Medicare/Medicaid Services (CMS) and responded to the follow-up questions of CMS by December 2014.

The application was re-submitted to CMS on March 6, 2018. When the application is approved, 114 people will be selected to participate in the Self Determination Program at TCRC for the first three years.

After that, anyone served by the regional center who is interested in the program will be able to enroll.

Self-Determination Information meetings about the application process are taking place in early April, 2018, in all TCRC office locations. Additional meetings will be held this year. If after attending an information meeting, you are interested in enrolling in the Self-Determination Program, notify the regional center. It’s important to learn about the increased responsibilities involved with Self- Determination. Enrolling does not guarantee that a person will be selected as part of the group of 2500 to be initially included in the program state-wide.

DDS will randomly select the 2500 participants, ensuring representation according

to: regional center, ethnicity, age, gender, and disability diagnosis. If you are not selected for this first group, your name will remain on the interest list with DDS in the event someone decides they do not want to participate.

Self-Determination is an excellent fit for some individuals and their families. It’s important to talk over the increased responsibilities with the circle of support, family members, service coordinators, and others to make sure that Self-Determination is the right choice. DDS will be selecting 114 people served by TCRC to participate in the next phase of this program. We look forward to hearing the many success stories as this program expands.

Learn more at www.tri-counties.org.

Self-Determination postcard

The ABLE Act and CalABLE

by Steven Crusinberry

WHAT IS CALABLE?

HOW DOES IT WORK?

HOW DO I OPEN AN ACCOUNT? ABLE accounts are scheduled to become available in California in 2018.

AM I QUALIFIED?

Any person with a qualifying disability can open an account and contribute up to $15,000 per year with a $100,000 account maximum.” Financial contributions to the account can be made by family, friends or the individual with the disability. This money accumulates tax free as long as the funds are spent on a “qualified expense.”

California Achieving a Better Life Experience (CalABLE) is a new program that allows people with disabilities to establish tax advantaged accounts and save up to $100,000 without losing public benefits such as SSI, SSDI and Medi-Cal.

To qualify, you must be diagnosed with a disability before age 26 and meet one of the following criteria: • Be entitled to Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) because of your disability.

• Be able to provide “self-certification” of your disability and diagnosis. This means you must have a written, signed diagnosis from a licensed physician which must be available upon request.

WHAT ARE “QUALIFIED EXPENSES”?

You can withdraw money from the account for any expense that relates to the person’s disability and helps them maintain or improve their health, independence or quality of life. This includes: daily living expenses, transportation, housing, wellness, legal expenses, financial services, among others.

They are already available in a few other states including, Alaska, Florida, Illinois, Iowa, Kansas, Kentucky, Michigan, Minnesota, Nebraska, Ohio, Oregon , Tennessee and Virginia. Out of state residents can open accounts in other states, but California residents should research them thoroughly as each state has different rules, fees etc. You can compare different states ABLE programs at this website: http://ablenrc.org/state_compare/ For more information on California’s ABLE program, please visit: http://www.treasurer.ca.gov/able/ Spring 2018 | 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 Events or Visit bit.ly/AlphaCalendar 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 2018

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) 5698999, 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 9, 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 6, 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 2018. Contact melissa@dsasbc.org MONTHLY PARENT HAPPY HOUR For parents & caregivers of those with all special needs in our community, meets the 3rd Tuesday of the month 4:30 - 6:30 at The Creekside 4444 Hollister Ave visit www. dsasbc.org for more details.

“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

Santa Barbara County 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 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 am- 2pm and in Goleta on Thursdays 9:30 am - 1:30 pm. For more information call (805) 969-0859.

ties are invited to experience their "BEST DAY" ever participating in ocean sports and beach play with trained volunteers.

The best day foundation provides wet suits, surf boards and kayaks along 3 or four trained volunteers for each participant while they are in the water getting to ride their first waves at Leadbetter beach.

Free lunch and awards after.

Volunteers needed - please spread the word. Check out their website for details. www.sbsnap.org

SANTA BARBARA COUNTY

PYC BASKETBALL SKILLS CLINIC FOR YOUTH WITH SPECIAL NEEDS SKILLS, DRILLS AND THRILLS! Join us for Beginning or Intermediate Basketball Skills Clinic hosted by Santa Barbara Special Needs Adaptive Programs at PYC every Fall and Spring. Clinics adapted for youth with special needs happen every fall and spring on 8 Tuesdays at the Page Youth Center. Coach Claudia and Coach Peter will be with us this spring along with support from community volunteers.

You may Register your child at the gym when you arrive. Fee: $45.00 Please call for scholarship information, no child is turned away. 805/452-9039 BASEBALL SEASON IS HERE! Join your friends playing Challenger baseball with one of our local little leagues. The season begins soon, so REGISTER NOW! Goleta, Carpinteria and Ventura: http://dpll. net Phone: Eric Hancey 805/455-0500

SURF, KAYAK AND BEACH PLAY WITH BEST DAY FOUNDATION May 20, 2018 from 8am to 1pm – Leadbetter Beach Children and teens with disabili-

Santa Ynez Valley Special Olympics Basketball Through collaboration between Special Olympics, the City of Buellton and the City of Solvang Parks and Recreation Department, Special Olympics Basketball is now offered in Santa Ynez Valley! The team meets every Monday until May 28th at 5:30 pm at Buellton Recreation Center (301 2nd Street, Buellton).

All Special Olympic programs are free of

charge to participants and a great way to get some exercise and meet new friends.

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.

If you are interested playing basketball or volunteering, visit the Special Olympics

Santa Barbara website at www.sosc.org/sb for more information.

If you would like to volunteer to become an assistant coach, contact Tim Ballaret at 805-884-1516 x104 or tballaret@sosc.org.

If you are interested in volunteering as a cheerleader contact Jerrie Domingos at 805-688-5041.

Spring 2018 | TriLine | 9

VENTURA COUNTY

Ventura County RAINBOW CONNECZTION 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. ON-GOING SUPPORT GROUPS, TRAININGS & ACTIVITIES 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. To register to attend or for a copy of the current “What’s Happening at Rainbow?” schedule of activities, please call 805 -485-9643; 800332-3679; E-mail: rainbow@tri-counties.org or go to our Website: www.rainbowconnectionfrc. weebly.com ACTIVITIES SOCIAL TIME FOR ADULTS RECEIVING SERVICES FROM TCRC (BILINGUAL) Meets 2nd Sunday of the month 11:00 AM – 12:30 PM 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 GROUP (ENGLISH) Meets 2nd Wednesday 7:00 PM - 8:30 PM 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.

10 | TriLine | Spring 2018

AUTISMO SUPPORT GROUP (SPANISH) Location varies, please call for details.

Meets 4th Thursday of the month 7:00 PM - 8:30 PM in Oxnard. Parents meet to share their experiences, resources and information.

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.

DOWN SYNDROME SUPPORT

EPILEPSY SUPPORT GROUP *NEW* STARTING IN MAY 2018 (ENGLISH) Meets first Thursday of the month from 7:00 PM – 8:30 PM in Oxnard. Let’s meet to share our experiences, resources and information.

DOWN SYNDROME SUPPORT GROUP (SPANISH) Meets first Tuesday of the month 6:30 PM – 8:00 PM in Oxnard. Families have open discussions on issues related to raising children with Down syndrome.

SIMI FRIDAY NIGHT GROUP (ENGLISH) Meets 1st Friday of the month 7:00 PM – 8:30 PM 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.

SANTA PAULA SUPPORT GROUP (SPANISH) Meets 1st Monday of the month 5:30 PM 7:00 PM at Heritage Valley – ARC in Santa Paula. Parents of adults served by TCRC meet to share the experiences & resources.

SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets first Tuesday of the month 6:30 PM – 8:00 PM 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 –

EPILEPSY SUPPORT

INFORMATIONAL “ONE - PAGER” 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 next date.

OTHER COMMUNITY SUPPORT GROUPS (The following support groups can be contacted directly.)

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 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 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

Ventura County

Camp that includes Rock Climbing and Sibling workshops. Agoura Hills 818-8652233 www.FriendshipCircleCa.org 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.

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 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 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 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

VENTURA COUNTY AUTISM TALK ON FACEBOOK https://www.facebook.com/ groups/1636384583315658/ FETAL ALCOHOL SPECTRUM 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.

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 PM 8:30 PM. Contact Special Ed Law facilitator: Kathy Greco malibulaw@aol.com AAC PARENT SUPPORT GROUP This is a great opportunity to meet other families with children using communication systems (e.g., picture systems, speech generating devices). Please contact Traci Peplinski with any questions, to RSVP and for directions. Space is limited. 805-8443003 traci.peplinski@gmail.com EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month – Meeting location Varies (Continued) Spring 2018 | 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.

Support group for active and retired military families with 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

ents have direct access, the opportunity to ask questions and to be heard. For information on the next date and speaker, or if you would like to be added to the email list or if you have questions, please contact Susan 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. Par-

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 | Spring 2018

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.

SUMMER ACTIVITIES Join us to find out what is happening in your community during the summer.

Wednesday May 9, from 11am-12 pm SLO and Atascadero RSVP to 543-3277 or php@ ucp-slo.org For families of children ages 0-10. You may come with or without your children.

MAKER WORKSHOP Parents can create materials 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. May 21 from 10-11:30 by appointment. PHP 940 Ramona Ave, Suite M, Grover Beach. RSVP to 543-3277 or php@ ucp-slo.org.

PARENTS OF YOUNG ADULTS WITH DISABILITIES SUPPORT GROUP Come and talk about the transition out of school, SSI, independence, social opportunities and more. We include parents of

individuals between the ages of 14 and 40 for this support group. This month’s event will be held on: Tuesday, May 15, 10:30-11:30 am. PHP Library, Atascadero 0-5 SUPPORT GROUP PHP is gathering input for a new support group for parents of young children 0-5 with special medical needs such as seizures, rare diagnosis, medically fragile in South County at our Grover Beach Office.

Please contact us to tell us what day of the week would work best for you and what evening hour: 5:30-7pm or 6-7:30 pm Contact 543-3277 or php@ucp-slo.org 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!

Activities range from eating out and bowling to movies, climbing gyms and archery.

Fridays. 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 LOCAL EVENTS TEEN DANCE April 27 at Ludwick Center, SLO. CAMP EXPEDITION Camp is almost sold out. If you would like your name on a waiting list please send an email to contact@SLOAutism.org. Camp is held at Camp Arroyo Grande 250 Wesley Ave Arroyo Grande, CA 93420. Register at http://sloautism.org/events/camp-expedition-06-18-2018 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.

For more information or to be put on the interest list, contact: slopandaspans@gmail.com or Zoe Jones (703)568-8574 ONGOING EVENTS ADULTS WITH DISABILITIES CONTINUING EDUCATION (AWD) CUESTA COLLEGE To provide an accessible program of active learning that enables adults with disabilities in San Luis Obispo County to achieve their individual employment, education, and life goals. In support of this mission, AWD is announcing a series of cost-free, ongoing informational sessions for: Students with autism who seek increased social and academic supports on the SLO campus, Students with developmental and learning disabilities who are interested in continuing their education through the Cuesta AWD program.

For more information please contact: Greg Halfman, AWD Program Liaison, (805) 5463100, EXT 2858, gregory_halfman@cuesta.edu SPECIAL OLYMPICS SLO Special Olympics is in need of volunteers. If interested please contact Kenna

Shannon at kshannon@sosc.org CHANGE A LIFE WITH THE GIFT OF MOBILITY Do you have mobility equipment that is no longer being used? Donate it to Joni and Friends Wheels for the World program. The group gathers manual wheelchairs, walkers (collapsible) and crutches and canes (aluminum) and distributes them to children and adults with disabilities worldwide. Pediatric equipment is highly desired. A tax deductible receipt will be provided. Contact Liz Rice at 441-2161 or liz@the5rices.com for pickup and drop off options.

REACH: REALISTIC EDUCATION ADDRESSING CONDITIONING AND HEALTH A new YMCA class for young people with disabilities. Participants will be divided by age and/or abilities based on parent surveys and instructor observation. Any skill level welcome between ages 6-25. The goal of the program is to empower those on the spectrum with independent living skills, physical activity and fun!

Saturdays. Ages 6-12 11:30am-12:15pm, ages 13-18 1-1:45 pm. 6 week karate class begins March 24. San Luis Obispo. Siblings/ aides welcome.

Contact April for more information 5438235. alewallen@sloymca.org 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*

2 Fridays of the month, 9am – 11am, Oceano Family Resource Center- 1511 19th St. For questions, call Ximena: (805) 4627135 or 431-2291 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 obsessivecompulsive 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, coordinated by NAMI and TMHA meets 2 ½ hours per week, for 12 weeks.

For more information, call Henry Herrera at (805) 440-3516 *bilingual

SAN LUIS OBISPO COUNTY

San Luis Obispo County

NORTH COUNTY ADAPTIVE SPORTS AND RECREATION 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 6:00-7:00pm, Other activities may include line dancing and more.

Check the calendar on the Website: http:// ncasarp.org/ and contact by email at info@ ncasarp.org

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.

Spring 2018 | TriLine | 13

BUMETANIDE, A DIURETIC, REDUCES CORE SYMPTOMS OF AUTISM: THE FRENCH CONNECTION

by James O’Hanlon, Ph.D., Psychopharmacologist French medical scientists seem to have a knack for appreciating the properties of drugs, developed for other purposes, which make them suitable for treating neuropsychiatric disorders. The classic example was their recognition in 1952 that chlorpromazine, initially developed as an antihistamine, was uniquely effective for treating schizophrenia. The French may have done it again, this time for autism.

Eric Lemonnier, a child psychiatrist, is the central figure in this story. During the time he worked at the French equivalent of a Regional Center, Lemonnier attended a presentation by neurologist Yezkhel Ben-Ari. It concerned the generally unrecognized potential of bumetanide for treating many brain disorders.

Lemonnier grasped the implications for the treatment of autism and elicited Ben-Ari’s collaboration. After preliminary studies, they undertook a series of clinical trials that have grown in size and sophistication over the past decade. The most recent shall be described shortly but first, what is bumetanide?

Bumetanide has been used since 1975 as a diuretic for reducing edema due to heart, kidney or liver failure. The drug acts by inhibiting a family of distinct proteins, called cotransporters, which span the plasma membranes of cells to allow the influx of specific ions. At a rate of 1-3 times per second, these cotransporters carry one sodium (Na+), one potassium (K+) and two chloride ions (Cl- ) into cells. There are two members of the family named for the ions transported and distinguished by their order of discovery; i.e., NKCC1 and NKCC2.

NKCC1 is expressed in numerous organs, including the brain, whereas NKCC2 is expressed exclusively by nephrons in the kidney. Nephrons are the urine-forming units of the kidney. Each nephron filters water, ions and other solutes from the blood, directing the stream through a conduit lined with specialized cells that extract solutes, returning them to the blood. Water follows the solutes by osmosis as the stream condenses into urine.

Multiple transporters, including NKCC2, are involved in the extraction process. By 14 | TriLine | Spring 2018

Figure showing the movement of chloride ions in and out of neurons in two stages of brain development

inhibiting NKCC2, bumetanide increases the urine volume up to 20%, albeit with some detrimental ion wastage, particularly that of K+. The drug’s diuretic effect is irrelevant to any therapeutic effects it may have in autism but is important for understanding its side effects.

Consequently, a pathological situation exists whereby GABA remains excitatory in some proportion of the neuronal population. They sought to compensate for the supposed predominance of NKCC1 over KCC2 by blocking the former with bumetanide.

The figure illustrates the function of NKCC1 in two stages of brain development. In both stages NKCC1 transports Cl- into neurons. Its effect on the neuronal chloride concentration is balanced by that of another cotransporter, KCC2. Whereas NKCC1 controls Cl- influx, KCC2 controls Clefflux. Together, the cotransporters regulate the internal neuronal Cl- concentration.

However, the balance between neuronal influx and efflux changes with brain maturation. Finalization of connections between neurons occurs during late fetal development and for several postnatal weeks. During this immature stage, neurons express NKCC1 abundantly but express KCC2 to a much lower extent. Consequently the internal neuronal Cl- concentration is higher than that in the external milieu.

This affects the neuron’s response to the neurotransmitter, γ-aminobutyric acid (GABA). GABA acts upon a particular receptor to open a chloride channel through the neuronal membrane allowing Cl- to flow out of the neuron. The effect is excitatory making it more likely that the neuron conduct a signal to other neurons. As the brain matures, KCC2 is also expressed abundantly and internal neuronal Cl- concentration falls below that in the external milieu. GABA still opens the channel but the direction of the Cl- flow is reversed. Now the effect is inhibitory and will remain so for duration of life. At least that is what normally happens. The French suspected that this developmental switch is poorly executed in the autistic brain.

The latest French study1 was a multicenter double-blind, placebo-controlled, trial. The purpose was to evaluate the efficacy and safety of three doses of bumetanide to select the optimum dose for use in subsequent trials. Participants were 88 children and adolescents with severe autism aged 2-17 years. They were randomly assigned to four groups who received placebo or bumetanide in doses of 0.5, 1.0 or 2.0 mg, twice daily, for 90 days. Standard scales were used for measuring changes in autistic symptoms from baseline to the final day of treatment.

The Childhood Autism Rating Scale (CARS), measuring stereotyped behavior, deficient communication and impaired social interaction, was deemed the most important. Improvement on CARS and two supporting scales was significantly greater after bumetanide than placebo.

All bumetanide doses produced similar degrees of improvement. For participants who completed the trial, 62% of those receiving bumetanide verses 19% of those given placebo qualified as “responders” by exceeding a pre-established criterion for improvement on CARS. Psychiatrists rating overall change in participants’ behavior on a 7-level scale found that 33% of the bumetanide-completers but only 5% of the placebo-completers were “much” or “very much” improved. But fewer participants completed the trial while taking bumetanide in medium (83%) and highest (59%) doses than those taking the lowest dose (100%) or placebo (91%). Side

effects related to the drug’s diuretic activity were the main reason for attrition at higher doses. So, bumetanide reduces the core symptoms of autism but only in children and adolescents who can tolerate it.

Identification of NKCC1 as the target for drugs that reduce core symptoms of autism is a major achievement of French research. Also important is the

indication of dysregulated neuronal Cl- transport in autism. Least important is the drug Lemonnier and Ben-Ari employed for validating their concept.

They chose bumetanide because it is the most selective NKCC1 inhibitor currently available. Yet it also inhibits NKCC2; fine for diuretic purposes but definitely unwanted for treating autism. It would be surprising if pharmaceutical companies were not

already engaged in developing drugs that specifically inhibit NKCC1. The first to gain official approval for the treatment of autism would be the real breakthrough. In the meantime, there is bumetanide.

Lemonnier E, Villeneuve N, Sonie S, et al. Effects of bumetanide on neurobehavioral function in children and adolescents with autism spectrum disorders.

Translational Psychiatry (2017) 7, e1056; doi: 10.1038/ tp2017.10

1

Ana Barranco and Kailani Gaspar, Walking the Walk

by Nancy Black

Oxnard, Ventura, Bakersfield… all over.”

Ana started working for Rainbow Connection in August. Together, they’re partnering to provide an Epilepsy Support Group, available at both Rainbow Connection locations in Oxnard and Simi Valley.

Kailani

Ana and her twelve-year-old daughter Kailani began their journey with epilepsy when she was 13 months old. Kailani was diagnosed with Lissencephaly, with seizures as part of the diagnosis.

Ana and Kailani visited UCLA when she was four. It was there that they were invited to join the annual Epilepsy Walk in LA. “I wanted to create our own team,” Ana reflected, “so we created a team for the Epilepsy Walk. We started with only 15 people; last year it was 60.”

The walk is open to participation from anyone who’s willing, and is held annually at the Rose Bowl. “I have people who walk on our team with us from San Diego,

Ana envisions the new support group in Ventura County, "Parents and people with epilepsy would have others to relate to, share their struggles, and hear what’s working and what’s not. For example, talking about CBDs - - for some people it works and for others, it doesn't. So this would an opportunity to share information and stories. It took me a while to agree to CBDs. Finally, we tried it and It stopped her seizures for a whole month. She’s been on CBDs now for three or four years. When I take her off, her seizures go crazy. It was just about getting more information. As soon as I started learning, she tried it and stopped having seizures.”

Having dramatically fewer seizures has changed Kailani's life. Ana says, "This is the first year she’s able to get to school on time. She only used to be able to go from ten to noon, and now she’s making it

to school on time and staying the whole day. She’s happy there. Just about two years ago she got VNS (Vagus Nerve Stimulator magnet therapy) which also really helps.”

Join Kailani’s Epilepsy Walk team by emailing walk.4.kailani@gmail.com. To learn about the Ventura County Epilepsy Support Group, please contact rainbow@tri-counties.org

WHAT DO YOU DO IF SOMEONE HAS A SEIZURE?

A common misconception is the advice to put something in their mouth. Don't do that. Here’s the correct procedure if someone has a seizure: • Make sure they’re not hurting themselves • Put them on their side • Make sure they’re breathing • Time the seizure As long as they’re breathing, they’ll recover and don’t need an ambulance. When they’re done, make sure they’re fine and don’t need any other help.

Rainbow Connection provides seizure cards that can be laminated and kept on the person who has epilepsy, showing what to do if someone has a seizure.

Holiday Kindness: Organizations Work Together to Create Special Meal Each Fall, Amigo Baby collaborates with several organizations to create a special Thanksgiving experience for people served by the regional center. Amigo Baby takes the lead on organizing efforts with the local Rotary Clubs from Thousand Oaks and Simi Valley, TCRC Volunteers, CDR Volunteers, Micop Volunteers, Amigo Baby Volunteers, Ralph's, private donors, along with others. Funding is secured for 400

meals that serves around 3500 individual, many of whom are mono-lingual or bi-lingual. Amigo Baby coordinates outreach and delivery. Work begins early on Thanksgiving morning, when volunteers take to the road to deliver a warm meal to the home of the family. This holiday kindness embodies the spirit of the season and is only possible with true collaboration in a compassionate community.

Spring 2018 | 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

This time of year always brings awareness of the critical issues around the State of California planning cycle for a viable budget to be funded as of July 1. Increased funding to support the growth of the population eligible for services is a mainstay of funding for developmental services in California.

I was pleased to see the California budget in January included $7.3 billion for our system. Federal tax reform and uncertainties around Medicaid funding (Medi-Cal) may be a continuing concern for our system. Our TCADD Board will remain vigilant around the impact of these issues.

on January 9, 2018. We were concerned for all people receiving services in those areas, our own Board members, and TCRC staff who were affected.

I appreciated the strong team effort of TCRC management to ensure the safety of people receiving services by TCRC. And we were so saddened around the loss of life.

So much of the work we do is focused on the myriad ways to improve quality of life for people with developmental disabilities. Being able to spend time doing something you enjoy is a common goal.

When a person's talents are encouraged to the point of a micro-enterprise, this is a true success. Enjoy the art of Mark Gonzalez on page three.

Our Board is pleased to see progress on the Self-Determination program. This has been in the works for awhile and the As the calendar year of 2018 advisory committee has offered launched, the TCADD Board several information meetings of Directors supported the in April. Watch for upcoming intensive efforts TCRC staff to meetings, if you are interested respond to the impact of the in Self-Determination, you must Thomas Fire in Ventura and attend a meeting to get on the Santa Barbara Counties, as well list. Sign up for email alerts at as the debris flow that occurred bit.ly/joinTCRC.

I also find interesting, and concerning, the impact of certain conditions, such as epilepsy, on the life of a child, and their family. My awareness around this condition was increased and I have further understanding of the challenges, after reading the article in this TriLine.

And, I so excited to learn about a world-class children’s museum, MOXI, in Santa Barbara! Not only am I eager to accompany my son to experience MOXI, I want to go for my own learning. I want to acknowledge the leadership of MOXI around their commitment to involvement and engagement of all people, all abilities, and all, regardless of resources.

Be sure to check out CalABLE accounts on page seven. This new resource is expected to become available this year and is a great way to save extra funds.

Please be mindful of all opportunities to advocate for our system. We are stronger together.

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 Howard Kraus Ralph Morales Robin Rosso Mark Wolfe

2018 Upcoming Board Meetings May 5............................10:00 AM (SM) June 9...........................10:00 AM (OX) July 14..........................10:00 AM (SV) Sept 7..........................6:00 PM (SB) Oct 6..........................10:00 AM (AT) Nov 2..........................6:00 PM (SB) 2018 Upcoming Town Hall Meetings April 4.............................................. SB May 16............................................ SV July 11........................................... SM Sept 19.......................................... OX Oct 24............................................. AT