TriLine Newsletter - Fall 2016 - English

A Publication of Tri-Counties Regional Center | Fall 2016

First Voice: Finding Ways to Communicate Cover Story 01 First Voice: Finding Ways to Communicate Featured Articles 03 How Teamwork Built a Home of His Own: The long road from a Developmental Center to community living 06 Working as a Team for Excellent Service 07 Employment First: Joey Carroll Supports Workers 14 Sulforaphane: Revolutionary Treatment for the Core Symptoms of Autism or False Hope?

15 My Life Inside. Peter Stoner’s Chronicle of His Early Life in an Institution 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.

Elizabeth wears an EMOTIV EEG device & uses apps to 'think to speak'

First smiles. First sounds. First words. Parents look at an infant’s face for that first sign of recognition. These expressions let us know our baby wants to interact. The toddler’s first words are celebrated with that first greeting or request.

For a child without sounds, speech, or language, the silence can be frustrating and confusing. When those who don’t use speech can use a new technology that helps to convey a word or thought, it can be life changing. Learning a person’s thoughts and their understanding of the world can be miraculous for that person and the family, circle of support, and friends.

Thinking … to Speak Assistive technology for communication has been explored for decades. Backlit picture or word boards with a wired remote cursor have been used along with basic boards including a set of photos. Fast-forward to 2016 - technology exists for a person to communicate a thought through thinking a word! Through the continued on page 4 Santa Barbara | Ventura |

San Luis Obispo |

www.tri-counties.org

From the Executive Director

by Omar Noorzad, Ph.D.

up to 200 new regional center Service Coordinators to reduce caseload ratios, the establishment of a new higher rate for smaller 4 bed group homes, financial incentives to encourage development of internships and increased employment of persons with developmental disabilities, and additional funding to promote research and planning to address the impact of cultural, ethnic or racial differences in accessing and utilizing regional center services.

2016 has been a year of some great celebrations.

The anniversary of 50 years of community services for people with developmental disabilities helped us to look at the past and appreciate the leadership of key legislators such as Frank Lanterman after whom the groundbreaking legislation the Lanterman Developmental Disabilities Services Act is named, along with parents who as pioneers of our system advocated strongly for change to better the lives of people with developmental disabilities in California. We are also celebrating the passage of a state budget for the new fiscal year 2016-2017 signed by Governor Jerry Brown on June 27, 2016 that in conjunction with ABX2-1 funding approved earlier in the year during a Special Session of the Legislature provides over $900 million in additional funding to our community services system. This restores most of the reductions enacted during the Great Recession. The approval of the additional funding is the culmination of several years of hard work, perseverance and coordinated efforts of many stakeholder groups throughout the state. Thank you to all who contributed to this successful effort.

Additionally, the new budget calls for the Department of Developmental Services (DDS) to hire an outside consultant to conduct a comprehensive study of the rates for service providers and funding for regional center operations. While the new additional funding provided this year is very helpful, a closer and more comprehensive analysis of the rates for service providers and funding for regional center operations is critical to the long term sustainability of our system. The rate study is due to be submitted by DDS to the Legislature by March 1, 2019. We are very pleased with this decision by the Legislature to examine the long term sustainability needs of our system and will keep a very close eye on the process to make sure we provide input.

The new state budget for FY 2016-2017 and the new special session ABX2-1 funding provides for a number of funding enhancements for the regional center system expected to serve over 303,000 individuals with developmental disabilities this year in the community. Some of the significant funding enhancements include a much needed rate increase for regional center service providers, the addition of

With the additional new funding comes a considerable amount of behind the scene work needed by TCRC to implement these exciting changes. TCRC is currently in the process of implementing these exciting new enhancements within the Tri-Counties region. More details about the new budget can be found on the TCRC website at www.tri-counties.org . A full copy of the FY 2016-2017 enacted state budget can be

2 | TriLine | Fall 2016

found at http://www.ebudget.ca.gov/.

As these changes and projects are underway, a Local Advisory Committee for Self-Determination has been established and is gathering input to support the development and eventual implementation of Self-Determination when the program is fully approved by the Center for Medicare and Medicaid Services (CMS.) The committee has been meeting regularly this year and will be holding additional meetings for the remainder of the year. You can access information about the TCRC Self Determination Local Advisory Committee and future meeting dates on the TCRC website at www.tri-counties.org. The next step in the Self Determination Program is for DDS to resubmit the Waiver Application to CMS with updated information for review and approval. You can access the Self Determination Waiver Application on the DDS website at www.dds.ca.gov.

This has indeed been an exciting year for us celebrating the 50th anniversary of the community based services system and with the new funding from the state we are finally recovering from the Great Recession. We will, however, need to be more vigilant than ever to ensure we continue to provide strong and timely advocacy at the local level and in Sacramento to address the long term sustainability needs of our system and to keep an eye on important upcoming programs like Self Determination. Let’s looks for ways to continue to support the message that the Developmental Disabilities system requires continued support for its growing population deserving a quality life in the community.

How Teamwork Built a Home of His Own The long road from a Developmental Center to community living Camden may have poor hearing, sight and memory, but he’s come so far. At birth his pediatrician that he would never walk or talk, and should be institutionalized. “He’s been with TCRC since I was six months pregnant,” stated his mother, Rhonda Ring “and we got the news about his genetic disability. He’s had services from the time he was five months old, learning to sit up.”

As Camden grew, his disabilities made his home and school life challenging.

The school district simply didn’t have the appropriate resources to address his disabilities and Camden had to be removed from public school. Camden has a powerful family team including his grandparents Ed and Raellen, who live on a ranch in Paso Robles. His mother lives nearby. Yet they were not able to provide the structure and support that Camden needed.

“It had gotten to where we didn’t have any freedom at our house. It was hard,” his grandmother explained. “We felt like our family was being destroyed,” said Ed, “like our relationships were going down the tubes when we were taking care of him and working.” Based on Camden’s behavioral challenges, he was placed in Porterville Developmental Center, a State operated, secured facility. He was there for five years.

For Camden, it was a very difficult situation. He recalls, “It was not very good.

People were fighting, talking back, copying movies [internet piracy]… I didn’t have a lot of privacy. I didn’t like it.” "He was able to get a good education at Porterville” said Raellen.

Five years was a long time for Camden’s family to wait and they were desperate to give Camden a chance to transition back into the community. Camden’s advocacy team began making plans to move him from the Developmental Center and to find supported living services in the community. This was no small task.

It was a cooperative effort that took two years for Camden to transition into his own home. “We were in constant contact with CPP Service Coordinator

Camden with his Mom and Grandparents

Marion McClain. Camden is really blessed, because we’re his team, his family, TriCounties Regional Center’s staff and the service providers. I know he wouldn’t be here today without his team; I’m sure” shared Rhonda. Now Camden lives in a house that he shares with his roommates. “It’s great,” Camden shares. “I’ve made some real friends.” Since leaving the developmental center, Camden's health has also improved. He walks, bikes and exercises daily and pays close attention to his diet, avoiding sugar and caffeine. He has lost 50 pounds since being discharged from Porterville.

Camden with his support staff

Camden’s Support Coordinator, Gus Castaniaga, comments “It makes a big difference to have family involved as advocates. I’ve seen it from the beginning.

It was a tough adjustment for Camden.

His house staff and all of his support team, we see a big difference. Now we can relax and enjoy his company. We can guide and support him and teach him skills.”

Marion McClain adds “The bottom line is that Camden is learning skills to be more independent in his own home while continuing to receive the proper support and supervision he needs to be successful.”

Camden receives support from Novelles supported living services. “This program with Novelles is an amazing one for us.

TCRC has really worked with us to keep him here locally,” said Rhonda. With the support of his team, Camden, his mom and grandparents can focus on being a family again. Marion McClain noted, “Their relationship was broken and now they are able to spend quality time together on the weekends, going for family trips or camping at the beach." Camden’s grandparents are very grateful for this shift in their family dynamics. His grandfather adds “This team has made a big difference - we can be a family again! Now instead of being authority figures, we’re grandparents. Now we can enjoy fishing, going to the movies and all the other family activities that we have been missing out on."

Camden is also focusing on his long-term goals. He has workdays at his mother’s house doing yard work. Camden’s grandfather taught him landscaping maintenance skills and Camden looks forward to continuing in that line of work.

Perhaps even owning his own business some day. He is very motivated to earn his own money and make his own way and be responsible for himself. He also enjoys writing. He likes to write letters, stories and screenplays. He even wrote a letter to President Obama and received a three page letter in response. Marion McClain is optimistic, “The road is not easy for Camden, however with a great and loving family, supported living program and a behaviorist, Camden is on the right road!” When people pull together like a team, then some major obstacles can be overcome. Camden looks at the room of people assembled in his honor of his residential milestone. He grins, “You said it.”

Fall 2016 | TriLine | 3

First Voice: Finding Ways to Communicate

Photo Credit: Gil Trevino

by Patricia Forgey

face and her excitement the first time she was able to use the technology to think and verbalize a word. Our PathPoint staff have worked diligently over the years to help different individuals increase their vocabulary in a variety of ways. The combination of Smartstones :prose app and iPad with the EMOTIV device has opened up an entirely new world of opportunities for people with all types of disabilities. The progress we are making is really exciting and this is just the beginning” adds Seth Miller, Vice President South Santa Barbara Division.

Gil compares devices, "The flat iPad is not as tactile, interesting or stimulating as the Smartstone for a person with autism. The use of the :prose app, with IOS devices such as the Apple watch, could open up a whole

Elizabeth was asked to establish a neutral state of thinking with the EMOTIV EEG software. The computer was then trained to this baseline mental command.

PathPoint’s assistive technology program has opened up numerous communication opportunities for participants. Staff are trained in using the technology and create an individualized plan for each person to help them reach their personal goals. In using these devices and software, participants are able to communicate with family, friends and community members. PathPoint is currently partnering with Smartstones, a Santa Barbara based company, to test their application or app, “:prose,” and a device, the “stone.” This app and the stone connect to a smart phone or iPad. A touch of the stone helps the person to say “yes” or “no” along with more words or phrases. Smartstones is using EMOTIV to try out or “beta” test the combination of :prose, the stone, and a wearable device that sends a person’s brain waves to a computer.

Through the EMOTIV device and app, Elizabeth was instructed to think about moving a three dimensional cube that floated on the screen. To say “Yes", she thought about pushing the cube away from her. To say “No” she thought about moving the cube toward her.

She could also move the cube left or right corresponding with two additional phrases.

Next, Elizabeth’s choices were matched to corresponding words or sentences.

Gil Trevino, Lead Direct Support Professional at PathPoint talked about the testing of the technology and equipment. “One of our participants, Elizabeth, is participating in the beta testing and pilot study of the Smartstone :prose app, the EMOTIV EEG wearable device, and the application software." To prepare to use the equipment, 4 | TriLine | Fall 2016

After this “training of mental commands” of the EMOTIV software, the :prose app was connected and an iPhone produced the word in response to Elizabeth’s thoughts. As Gil stated in a recent press release “Within minutes (of using the technology) she was speaking several phrases aloud, compared to years of training with other technologies!

This advancement has allowed someone who once was a non-verbal communicator, the ability to communicate her thoughts, feelings and answers in a way she never has before.” Using her Tobii Dynavox, Elizabeth commented “My heart is filled with joy because I can be heard, and I’m thankful for this opportunity.”

“I will always remember the look on Liz’s

world of new possibilities. For example, a non-verbal or deaf person in a supermarket could ask a question with a swipe his watch or IOS device." A smart phone can also receive text messages through the :prose app that show up on the stone. For example, a message such as 'I love you' would light the stone pink. A touch or gesture Credit: www.smartstones.co/presskit

Community Access-assistive technology program at PathPoint in Santa Barbara, one program participant is learning to communicate this way.

Credit: www.smartstones.co/presskit

Elizabeth communicating using the Smartstones Prose App on her iPad with the wearable EMOTIV EEG device

on the Smartstone to the left could mean 'I love you' or 'ditto.' Gil exclaims, "This is an amazingly cool device with incredible potential to change a person's life!” For more information about this technology,

go to www.smartstones.com or to learn more about PathPoint’s Community Access Programs visit www.PathPoint.org.

Utilizing Technology to Communicate The Arc of Ventura County’s Digital Literacy Program provides education, training and support to empower individuals to communicate through the use of technology to achieve their life goals. Andy Mack, Director of Information Technology, explained that the program includes training for staff members on the use of technology assistance for communication. As assessment is conducted by a licensed speech pathologist to identify appropriate applications that meet the participant’s communication needs. The Arc’s staff receives training on the use of the technology and a Communication Plan for the individual records progress towards their goals. The program was established with grants received from the Disability Communications Fund (dcfund.us) and A Voice Discovered (www. avoicediscovered.com).

Speech pathologists Cheryl Fletcher and Traci Peplinski support this effort through Integrated Therapy Services. They each hold the AACT credential for specialization in augmentative and alternative communication. “There are 400+ apps for augmentation of communication,” says Traci, founder of A Voice Discovered. Enthusiastic about the trends in technology and the benefits for enhancement of communication, Traci comments, “These folks have quite a bit to say! They have blown away the The Arc staff who had no idea what the participants could say. It has been amazing." "When people have a voice, lots of

Arlette working with Traci

messages follow!” Andy noted.

The Arc staff have seen first hand the effect of technology that they say “brings a voice to our participants." One participant, Gracie, was able to go to a restaurant and for the first time in her life, place her own order.

The Arc of Ventura County purchased thirtytwo iPads at the beginning of the program.

Sixteen people are included in the Digital Literary Program at The Arc, using iPads and selected applications, with assessments planned for additional participants. People with the ability to point to a screen were first set up with assistive technology. The apps that are currently being utilized are GoTalkNOW www.attainmentcompany. com/gotalk-now and Proloquo2Go www. assistiveware.com/product/proloquo2go.

Andy tells of success stories that demonstrate how quickly a person learns to use the technology. A young man was asked to leave his drum class to train on a communication device. After ten minutes, he was able to tell the therapist, “I want to go back to my class!” Andy adds, “He really likes his drum class, so - it worked immediately. He figured it out quickly!” In another situation, Andy shared, “A mother broke down in tears when her daughter was able to use words with the use of technology. This was the first time hearing her daughter ‘speak.’” To learn more about The Arc of Ventura County's Digital Literacy Program, contact Andy Mack at amack@arcvc.org.

Cheryl Fletcher looks forward to better use of technology for communication assistance. “Technology now exists” explains Cheryl, “that was not available with the current combinations of the iPad and an app.

Young adults in their late 20s may have left school with a paper based system before the technology existed.” Traci added, “There are some kids with devices that are owned by the public school. When a student leaves the school system at 18 or older, access to the technology for communication is lost when the device stays with the school.”

Planning for this transition from school to adulthood with the support of technology for communication is important.

The ability to communicate helps give us the shared experience of being human. It helps us identify who we are through sharing our thoughts and emotions. Advances in technology over the past twenty years have significantly widened options for assistive technology. A person centered approach is to find the right communication plan for each individual. For some, the answer might be using a low-tech word or picture board. Others, an iPad with picture or word sets. Software to track eye gaze selections is on the horizon for those who can't easily point at a screen. If people can 'think to speak' today, what does our future hold? A brain-interface with Siri?

Adam using a picture board and iPad

Fall 2016 | TriLine | 5

Working as a Team for Excellent Service

by Nancy Black & Steve Crusinberry

not have to use a manual keyboard. Best Buy also modified Jon's work area with a special desk allowing him to get closer to the computer. “I really appreciated that. I wrote them a thank you letter for doing all that.” Jon recalled. With his new customized workspace in place, Jon jumped right in as a team member fielding calls, helping customers with their online orders, and tracking inventory among other customer service related duties.

Jon with Manager Gil at Best Buy

Jonathan Rosales has always enjoyed shopping at Best Buy. He really appreciated their excellent customer service. On one of his shopping trips, he expressed an interest in employment and inquired about any possible job openings that they may have. The sales person directed Jon to use the company website to fill out a job application. Jon also contacted PathPoint, a nonprofit that assists people with disabilities in finding employment. The rest, as they say, is history.

Jon has been employed with Best Buy for two years now and they have a great working relationship. Jon has never let his cerebral palsy dampen his determination.

Tawny Lopez, Jon's Service Coordinator at TCRC acknowledged his strong work ethic.

"When I first met Jonathan, I was impressed by his motivation to gain new employment. He strives to be excellent in his work and many other areas of his life. I love his drive. Jonathan knows what he wants and he'll work tirelessly to get it."

Jon has received services through TriCounties Regional Center since 2013. He's lived in a variety of settings: a family home, group homes and an intermediate care facility, finally reaching his goal of independent living through Supported Living Services. A huge part of reaching this goal 6 | TriLine | Fall 2016

was competitive employment. He appreciates being able to receive services like this due to the Lanterman Act. “It allows me to inspire people to be their best,” Jon said.

Jon works with his Support Plan Coordinator from PathPoint, Brad Hunt. Brad, along with a Job Coach, help Jon establish work goals, learn new skills, and work through employment-related challenges. Brad listed the ingredients for Jon’s success.

“He is driven by a will to succeed and overcome challenges. Jon has a strong work ethic, and he’s flexible with the hours assigned to him. Despite his challenges, his positive attitude, dedication, and professionalism all feed into his recipe for success.” Jon’s coworkers at Best Buy have praised his reliability. He has a long bus ride to and from work, but he’s always on time.

Due to physical limitations resulting from cerebral palsy, Jon had to overcome a few obstacles to be able to perform his job.

Best Buy stepped right up and met Jon’s challenges head on and furnished him with state of the art adaptive technology.

He has a hands-free headset to help him communicate with customers and coworkers and they are currently working on integrating a speech-to-text software program. This will allow Jon to recall and input information as fast as he can speak, and

The unemployment rate for people with disabilities is about double the rate for people without disabilities. Hopefully more employers like Best Buy continue to tap into this under utilized workforce. It’s a great way for companies to diversify their teams and perhaps even take advantage of available tax incentives. “I’ve seen and received feedback from numerous employers throughout the community, and have been told that many of their employees with special needs are some of the most dedicated and valued employees they have,” according to Brad.

The value of employment should not be underestimated. An individual's opportunity to work and contribute help foster independence and define their identity and place within the community.

There are many facets to Jon’s motivation to work. He is an enterprising young man, eager to live an independent life, but he also wants to set an example for others with disabilities. “I decided to apply for a job for various reasons,” he explained.

“I wanted to show people in my life that I could be on my own and be independent and get a job, and also to encourage others in my situation that you can get better by working and showing that you can do something positive with your life.”

Now, as a Best Buy employee, Jon has the opportunity to provide others with the exemplary service that he enjoyed as a customer. “Having a job has changed my life,” Jon shared, "I’ve learned to mature in different ways and areas in my life and being around people, and meeting new people.

I just love the people I work with. They’re very caring, understanding, and helpful.

I love the fact that I don’t feel like I’m the oddball out; I feel I’m a part of the team.”

Potential Tax Savings for Home and Community Based Services Waiver We would like to make you aware of potential tax savings for family members of people on the Home & Community Based Services Waiver!

Per Internal Revenue Service (IRS) Notice 2014 – 7, there may be tax savings for family members who earn income by providing supports through In-Home Supportive Services (IHSS) for an individual who is enrolled in the Home & Community Based Services (HCBS) waiver.

Talk to the person who helps with your taxes to find out if you qualify. If so, you will need a letter of verification that you are in the HCBS waiver program. Contact your service coordinator and we will send it to you.

Review the IRS notice at:

https://www.irs.gov/pub/irs-drop/n-14-07.pdf

Employment First: Joey Carroll Supports Workers Welcome Joey Carroll, TCRC’s new Employment Coordinator!

TCRC heard the message from our stakeholders about their wants and needs and made it a priority to fund this new position as part of our strategic performance plan.

We are very pleased to announce Joey Carroll as our new Employment Coordinator. With her expertise and enthusiasm, Joey is an incredible asset to our broader community.

Joey began working with Tri-Counties Regional Center almost four years ago, as a Service Coordinator for transition-age youth. Joey’s new role will be to support TCRC and our service providers in creating opportunities for meaningful jobs in the community that offer competitive wages, benefits, and long-term peer relationships.

This will include assessing the need for employment resources throughout San Luis Obispo, Santa Barbara and Ventura Counties and developing person-centered

services and supports that meet the needs of those who want to work. Joey will also be guiding TCRC in its support of Employment First Policy which she explains, “is about ensuring that all people, regardless of the severity of their disabilities, have opportunities to enjoy the benefits of competitive integrated employment, including self-employment.” One way TCRC can help people receiving services to find a job is by helping them access resources for vocational training and job support through the planning team process. This service is available due to the Lanterman Act. The right to work is an integral part of the overall rights for all people with disabilities. If you are receiving services through TCRC and you are looking for employment opportunities, please contact your Service Coordinator to review options that may be available to you.

Thank you Joey for taking on this very

"It's about ensuring that all people, regardless of the severity of their disabilities, have opportunities to enjoy the benefits of employment..."

Joey & Irene at a Employment Planning Workshop

important new role in empowering people to have the lives they choose.

Contact Joey at jcarroll@tri-counties.org or stop by and welcome her at TCRC. Fall 2016 | 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!

Resource Libraries ~ offer over 2000 titles on developmental and other disabilities.

Located at Tri-Counties Regional Center offices in Santa Maria and Santa Barbara.

Mobile library services are available. Call for hours or specialized assistance.

SANTA BARBARA SPECIAL NEEDS ADAPTIVE PROGRAMS WEBSITE A wide variety of 100+ community resources, events and information supporting our area special needs agencies. Find activities for all ages posted on website. www.sbSNAP.org PARENT-TO-PARENT SUPPORT Parent to parent support group for topic directed discussion and facilitated networking. Located at the Alpha Resource Connections library in the Tri-Counties Regional Center, 1234 Fairway Dr. – meets the 2nd Tuesday of every month, 10am-12pm. Contact Norma Puga 347-2775.

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.

AUTISM SOCIETY OF AMERICA SANTA BARBARA CHAPTER (ASASB) Contact: Marcia or Sandy at 805.560.3762 or info@asasb.org, www.asasb.org.

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.

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.

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.

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.

CALL ALPHA FOR MONTHLY PARENT TO PARENT SUPPORT AND EDUCATION ACTIVITIES

ALPHA PARENT GROUP Parent Support Groups meet regularly at Alpha Resource Connections library at TCRC in Santa Maria and Santa Barbara and at the Family Service Agency Dorothy Jackson Family Resource Center in Lompoc Contact: SB- Jennifer Griffin at 805-6832145. SM- Norma Puga 347-2775. LompocMariana Murillo 453-7739. Email: oscarlpz@ hotmail.com (This group is for Spanish speakers.)

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 8 | TriLine | Fall 2016

EARLY START PLAYGROUP Discussion, networking and crafts. Location varies. Contact: Jenifer Griffin 683-2145 ART OF AUTISM The Art of Autism has various events around Santa Barbara County throughout the year. Visit www.the-art-of-autism.com or email theartofautism@gmail.com.

SBATA@YAHOOGROUPS.COM Online group for parents of special needs children, email info@asasb.org.

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 350 children, teen, and adult athletes from Carpinteria, Santa Barbara, and Goleta.

Fall sports for youth and adults are set to begin in August. Sports include floor hockey, bowling, soccer, tennis and softball. Call 805-884-1516 to learn more.

DOWN SYNDROME ASSOCIATION OF SANTA BARBARA COUNTY Contact Melissa Fitch at Melissa@dsasbc. org or (805) 886.4411, www.DSASBC.org DSASBC VALENTINE’S DAY DINNER DANCE PARTY Goleta Valley Community Center February 2017. Contact melissa@dsasbc.org for 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! Tara Vazquez (803) 269-6313 or twalling.kidsatplay@gmail.com. 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 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,

Santa Barbara County 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 October: 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

TEEN EXTREME SOCIAL CLUB Meets weekly for outings & activities Contact Amy Buesker at (805) 683-2145.

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

SANTA BARBARA COUNTY

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 SAND AND SURF DAY August 2017. Learn to surf, kayak, and boogie board. info@asasb.org Contact Cathy Abarca.

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.

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 Fall 2016 | 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.

AUTISM SUPPORT AUTISM PARENT SUPPORT GROUP (ENGLISH) Meets 2nd Tuesday 7 - 8:30pm in Oxnard.

Families meet to share the experiences they’ve had with their children with Autism as well as share and learn about resources.

AUTISMO SUPPORT GROUP (SPANISH) Meets 4th Thursday of the month 7pm 8:30pm in Oxnard. Families meet to share their experiences, resources and information.

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.

10 | TriLine | Fall 2016

SIMI PARENT SUPPORT GROUP (ENGLISH & SPANISH) Group in transition- Call for next meeting date and time. Group meets at Tri-Counties Regional Center in Simi. This group is open to parents at all stages of life and dealing with all sorts of diagnosis. The discussion is centered on the children’s disability, how it affects the family, the resources the family currently uses and resources that the family might not already know about. A Rainbow representative facilitates the group. Registration required.

NOW AN ADULT: MOVING FORWARD…“SUPPORT GROUP FOR CAREGIVERS” (ENGLISH) Meets 3rd Thursday of the month 10:00am - 11:30am at Simi Valley. A parents/caregivers Support Group for families who have an adult family member ages 18 and older with special needs served by TCRC. ADULTHOOD (22YRS THRU LIFE, TCRC PERSON SERVED): THE JOURNEY CONTINUES “SPECIAL FAMILY NETWORK” (ENGLISH) Meets 2nd Tuesday of the month from 7pm – 8:30pm in Oxnard. 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.

“FAMILIAS UNIDAS” 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.

SIMI SPECIAL PARENTS NETWORK (ENGLISH) Meets 3rd Tuesday of the month 9:30 – 11am in Simi Valley. Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs.

INFORMATIONAL - 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.

“ONE - PAGER” DEVELOP A ONE - PAGER FOR YOU OR YOUR FAMILY MEMBER Create your child’s (or adult served by TCRC) One- Pager. This is a great way to share valuable information. Simply give a copy of the One-Pager to the people who will be interacting and working with your child/adult – the teacher, aides, therapists, etc. Give us a call and we’ll help you put one together for your child. For Persons Served, call to schedule appointment.

*NEW DAY* SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets the first Tuesday of the month 6:30pm – 8pm in Oxnard. Families meet to share the experiences & resources.

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 & get suggestions that might help with guidance from one of our staff and/or other parents.

Individual For Persons Served, call for appt.

SANTA CLARA 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.

WHAT’S NEXT AFTER EARLY START? FOR YOUR CHILD WITH SPECIAL NEEDS Will your child be turning 3 years old and transitioning out of the Early Start Program?

Changes can be confusing. Let’s make the transition easier. Join one of our “What’s Next After Age 3 Discussion Groups”. Call Rainbow for the next meeting date or to

schedule an individual appointment!

OTHER COMMUNITY SUPPORT GROUPS Contact the following groups directly.

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.

THE AKTION CLUB OF SAN BUENAVENTURA Sponsored by the Kiwanis and The Arc. Club membership offers opportunities to form friendships and develop leadership skills through volunteer work and projects. 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.

There is no support or transportation provided. Free. For further information call Patty Schulz at 805-218-7807 or www.cnhaktion.org/about.html 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.

CENTER 4 SPECIAL NEEDS 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 FUN CLUB THROUGH THE CITY OF OXNARD SPECIAL POPULATIONS PROGRAM This program is designed to provide social and recreational opportunities for persons 5 years of age and older 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 go to www.oxnardrec.org/17/1/1027/ or call 805 385-8019.

Ventura County

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.

Programs offered are Sports Night, Friends at Home, Gymnastics Programs, Sunday Circle, and a Winter Camp that includes Rock Climbing and Sibling workshops.

Agoura Hills (818) 865-2233, www.FriendshipCircleCa.org SPECIAL 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) 654-7717 or http://www.sosc.org/ventura AUTISM SUPPORT AUTISM SPECTRUM AND RELATED DISORDERS SUPPORT GROUP Group meets 5:30-7:00 the 3rd Monday of each month at the Camarillo Health Care District. Free and open to all. Contact Jeff or call 805-388-1952, ext. 100 to RSVP. AUTISM SOCIETY VENTURA COUNTY (ASVC) ASVC holds Community Talk Nights usually on the third Friday of the month from 7-9pm in which guest speakers present on topics important to parents, and parents are able to mingle, socialize and network.

Free on site childcare is usually provided.

Call 805-496-1632 or 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 HighFunctioning Autism. For information log on to www.vcasap.org or call 805 419-9934.

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

VENTURA COUNTY AUTISM TALK ON YAHOO GROUPS https://groups.yahoo.com/neo/groups/ venturacountyautismtalk/info and 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. Contact Joeli Gutfleisch 805-796-7683, joelig17@ gmail.com or https://sites.google.com/site/ socalfasdnetwork/ SUPPORT FOR ALL SPECIAL NEEDS 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.) Contact and RVSP to Traci Peplinski. Space is limited. (805)8443003 or traci.peplinski@gmail.com SPECIAL PARENT’S CAFÉ An informal group of parents who meet to share information, take a break and make new friends. For more info contact Silvia at (805) 265-6111 or email: spc.moorpark@ gmail.com EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month at Seabee Museum. Support group for active and retired military families with children with special needs. For information please *NEW Contact: Scott Council, Military Liaison for Special Needs, at (805)982-2646 or scouncil@AFSC.com PAUSE4KIDS INC. – ENGLISH PAUSE4kids provides information, support and services for residents of Ventura County & nearby areas. For more info go to http://pause4kids.org/ or call 805-497-9596.

PAUSE4kids hosts Monthly (Continued) Fall 2016 | TriLine | 11

Ventura 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.

THE TRANSITIONS SUPPORT GROUP For parents of people aged 10 – 28 and young adults aged 8-28. 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. Contact Susan at susan@baukus.net

UNITED PARENTS A parent run non-profit that helps families raising children with emotional, mental, and behavioral disorders. Office (805) 3841555, or 24/7 line (805) 551-0472.

SAN LUIS OBISPO COUNTY

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 PHP SPONSORED EVENTS MAKE & TAKE Does your child receive behavior or speech services? Parents can build materials for their children's intervention program. There will be computers, printing supplies, laminating supplies, etc. on hand. Training and support will be provided. This workshop is offered the 3rd Monday of every month. By appointment. PHP, 940 Ramona Ave, Suite M, Grover Beach. *RSVP required* PARENTS OF YOUNG ADULTS WITH DISABILITIES SUPPORT GROUP Come and talk about the transition out of school, SSI, independence, social opportu12 | TriLine | Fall 2016

nities and more. Once a month: Call PHP Atascadero with questions 461-7415 PHP Library, Atascadero GET CONNECTED AT PARENTS HELPING PARENTS Does your child have a speech delay, sensory issues, ADHD or another diagnosis?

Are they in Early Start or do they have an IEP? Get Connected events are for parents and their children ages 0-10 years old.

Come check out our new resources! Meet other parents and PHP’s staff at BOTH our Atascadero and San Luis Obispo offices one Wednesday a month from 11am-12pm SAN LUIS OBISPO PHP Library, 3450 Broad St, Suite 111, SLO * bilingual Español/English staff are available ATASCADERO PHP Library, 7305 Morro Rd, Atascadero 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 ARTS FOR LIVING Early Intervention Music Group.

Six Saturday, 10AM sessions starting October 15th-November 19th. Fig @ Courtney's House (in secret garden) 311 6th Street Templeton, CA Call 225-6101 for availablility. Arts for Living is establishing two San Luis Obispo and one Atascadero Music Club beginning in October – please call

for November and December availability – drop ins may be welcome if space allows!

LOCAL EVENTS LEARN.CONNECT.PLAY.PRESCHOOL Lively, interactive, hands-on parent education classes are held on the second Wednesday of the month. Please call ahead so we can provide free babysitting in the nursery. Wilson Social hall at First Presbyterian Church 981 Marsh St. San Luis Obispo 805-471-7529 SOUTH COUNTY PARENTING SUPPORT GROUP Please join us for a free 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. Thurs., 9am–11am. Nov. 17th & Dec. 8th. First 5 School Readiness, 1551 17th St., Oceano. For questions, call Ximena (805) 462-7135 PARENT ORIENTATION TO SPECIAL EDUCATION Brought to you by PHP, Community Advisory Committee and SELPA. This is your opportunity to learn more about special education programs in San Luis Obispo County. The evening will include a presentation by Jill Heuer, SELPA Director. Topics will include: • Overview of services in San Luis Obispo County SELPA • Brief history of IDEA • IEP process & information • Ways to seek solutions. • Raising a child with a disability • More presentations in early 2017.

Contact/RSVP: 805-7827301

CCASC AUTISM SPECTRUM PARENT SUPPORT GROUP (NORTH COUNTY) Providing opportunities to network and socialize with other parents, grandparents, & guardians, whose children’s lives are challenged with autism spectrum disorders (including Asperger Syndrome/HFA/ PDD-NOS). Next meeting is November 18th. More details can be found at http:// autismspectrumcenter.com/calendar NORTH COUNTY ADAPTIVE SPORTS AND RECREATION PROGRAM Meets each Thursday evening 6-7:30 pm at Colony Park in Atascadero. Currently we are playing kickball in the gym and all are welcome! Website: http://ncasarp.org/ Contact email: info@ncasarp.org TCRC PEER-TO-PEER HEALTHY RELATIONSHIPS AND SEXUALITY Educational classes focused on social and sexual issues are currently available to adults and transition-aged youth served

by TCRC. Me & You, teaches participants skills that help them reject unhealthy relationships and nurture positive and safe ones. The second, Respect Yourself, provides clear and accurate information about human anatomy, sex, reproduction, birth control, STD's, pregnancy, and abuse prevention. Classes are taught by an experienced peer-training team with guidance from professional training facilitators, and are fully funded through TCRC. For more information, please contact Karen Moore, PathPoint-SLO director, at karen.moore@pathpoint.org, or consult your TCRC service coordinator.

Family-to-Family Education Program is a free, 12-week course offering education and support for family members whose relative or loved one has schizophrenia, major depression, or other mental illnesses or brain disorders. The class provides upto-date information on the diseases, their causes, and treatments available, as well as help and coping tools for the caregiver or loved one. Call John Klimala at 550-3889 for more information. www.nami.org/f2f TRANSITIONS MENTAL HEALTH ASSOCIATION PARENTING CLASSES 10 week Parenting Class/Support Group every Tuesday utilizing the wisdom of Trauma Informed Heather Forbes. This class will be geared to parents who want to deepen their connections with their kids and have a deeper understanding of what might be driving challenging behaviors.

For more information call (805) 540-6500 CCASC AUTISM SPECTRUM PARENT SUPPORT GROUP Providing opportunities to network and socialize with other parents, grandparents, & guardians, whose children’s lives are challenged with autism spectrum disorders (including Asperger Syndrome/HFA/ PDD-NOS). For more info please contact Debra at 805-235-8038 or email contact@ autismspectrumcenter.com. 7-9 pm Every other month, odd months, usually on the third Friday. Hampton Inn Conference Room; Child Care not available.

SELF-DETERMINATION The Self-Determination Program is a voluntary alternative to the traditional way of providing Regional Center services, including greater control of individualized budget. It will begin when approved for Federal funding, but you must be on the “interest list”; contact TCRC and your service coordinator or you can self-identify by emailing sdp@dds.ca.gov with your name, name of person interested and your regional center.

STRIDE’S FRIDAY CLUB A free weekly program put on in conjunction with the SLO Special Olympics. Every Friday for three hours, between 10 am and 1 pm (in one hour sessions by age group), kinesiology students interact with individuals with special needs and partake in different forms of sport and exercise together. It takes place at our Recreation Center, in the main gym. 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 For more information, email kinesiology@calpoly.edu or Michael Lara at mlara@sosc.org

FAMILY TO FAMILY The National Alliance on Mental Illness

FAMILY TIES SUPPORT GROUP Are you caring for another relative’s child?

Then you are a “Kin Caregiver”. Kinship Center has a monthly support group in Oceano. For more info call 434-2126 Marta ext. 3030 Alex ext. 3031 LEISURE CLUBS Leisure Clubs are supervised excursions and activities in the local community once a month on Saturdays for adults with developmental disabilities. The cost of $25 includes meals, staff, activities and two-way transportation. Call UCP at (805) 543-2039 for more information, or email @ ellen@ucp-slo.org. See upcoming Leisure Club events below.

SAN LUIS OBISPO COUNTY

San Luis Obispo County

SHOPPING AND LUNCH IN SLO November 19 @ 1:00 pm - 4:00 pm CHRISTMAS PARTY December 17 @ 1:00 pm - 4:00 pm The Graduate, 990 Industrial Way San Luis Obispo THE RANCH WORKDAY November 11 @ 1:00 pm - 4:00 pm December 9 @ 1:00 pm - 4:00 pm The Ranch, 875 Laureate Lane, CA 93405 Join us and volunteer for The Ranch. Ranch workdays are held every second Friday of every month in 2016 except for August 2016. Contact Raymond Crandell, UCP’s Program Coordinator, for more information at rcrandell@ucp-slo.org.

CIP TOURS CIP Tours are supervised vacations for adults with disabilities. Each tour price includes transportation, lodging, meals, support staff, and all activities. Personal spending money is not included in the cost of the tour.

Our trips fill up fast, and a $100 nonrefundable deposit is required to hold your spot! Full refunds are available if your trip is cancelled for any reason. View the tours below for more information and contact Ellen at (805) 543-2039 or email veronica@ ucp-slo.org to sign up!

CIP TOUR – CATALINA ISLAND December 10 @ 8:00 am - December 12 @ 5:00 pm.

Fall 2016 | TriLine | 13

Sulforaphane: Revolutionary Treatment for the Core Symptoms of Autism or False Hope?

by James O’Hanlon, Ph.D., Psychopharmacologist Those who follow research on autism spectrum disorder (ASD) were astonished by a recent article describing the beneficial effects of sulforaphane (SFN), a broccoli extract, on the behavior of young men with ASD participating in a clinical trial. Most of us became aware of the article from sensational and misleading media reports.

I greeted the news with skepticism.

However after reading the article and noting the qualifications of its authors, skepticism was replaced by wonder. Could this be a breakthrough? For me at least, it was time to learn about SFN. SFN exists in all cruciferous vegetables with highest concentrations found in broccoli sprouts and seeds. SFN is not normally free in plants. Rather it is bound to glucose in an inert compound called glucoraphanin.

Rupture of plant cells by insect predators or infection releases an enzyme, myrosinase, which breaks the bond between SFN and glucose. In plants, SFN acts as an insect repellent, a selective antibiotic and antifungal agent. SFN was first isolated in 1992 by a team of pharmacologists led Paul Talalay at Johns Hopkins University.

They shortly recognized that its biological activity was not limited to the plants that produce it. Their initial studies, followed by an explosion of worldwide research, revealed that SFN is capable of inducing the genomic expression of protective proteins to withstand a variety of stressors.

Although the effects of SFN are mediated through several metabolic pathways, each achieving a different result, that for coping with oxidative stress is best understood. Oxidative stress occurs when the concentration of certain anions (“free radicals”) exceeds the natural antioxidant system’s capacity to neutralize them. Free radicals are generated in several metabolic processes, most notably the one occurring in intracellular mitochondria that transfers the energy from nutrients to a molecule providing energy for virtually every metabolic reaction. Free radicals are highly reactive. If unchecked they oxidize cellular components causing loss of vital functions, cell degeneration and eventually cell destruction. Cell injury triggers an innate 14 | TriLine | Fall 2016

immune reaction releasing even more free radicals and promoting local inflammation.

So what began as an intracellular event can expand to affect functions of an entire organ. The brain is the most vulnerable organ to oxidative stress owing to its high metabolic rate and relatively low antioxidant capacity. Yet a mechanism exists for increasing that capacity. The key element is a protein, Nrf2, which has been called the “Master Regulator of Cell Defense.” Under normal conditions Nrf2 is inert and bound to other proteins but when oxidative stress exceeds a threshold, Nrf2 is released to travel to the genome where it acts as a “transcription factor” to activate numerous genes that produce antioxidants and enzymes for neutralizing free radicals. This mechanism does not normally operate at maximal capacity and certain nutraceuticals and their synthetic analogs are known to boost its activity.

Of this number none is as potent and as capable of penetrating the brain as SFN. Unequivocal signs of oxidative stress and neuroinflammation were discovered in the majority of individuals with ASD more than 10 years ago. The discovery was made in part by neurologists working at the same university where pharmacologists were busily seeking medical indications for SFN. Leaders of these groups, Andrew Zimmerman and Paul Talalay, recognized their complimentary interests. In 2011 they joined forces for designing a placebocontrolled, double-blind, clinical trial for assessing the effects of SFN on symptoms of ASD.1 Zimmerman, who had moved to the University of Massachusetts, was responsible for conducting the trial and Talalay for providing pharmaceuticalgrade SNF. Participants were young men, aged 13-27y, with moderate-severe ASD. Twenty-nine received SFN and 15 received placebo for 18 weeks. Their behavior was systematically rated by parents/caregivers using two scales. One, the Aberrant Behavior Checklist (ABC), has become the standard instrument for measuring untoward behavioral symptoms of ASD. The other, Social Responsiveness Scale (SRS) is less widely used but uniquely sensitive to one of the core symptoms of ASD; i.e., deficient social/emotional

reciprocity. Additionally, clinicians rated the changes in many of the same symptoms from the beginning to the end of the trial. The results were dramatic. The SFN group’s average improvement on the ABC was 10 times larger than that shown by the placebo group (confirmed by clinicians’ ratings). The SFN group’s average improvement on the SRS was likewise 10 times that of the placebo group’s (also confirmed by clinicians' ratings). This is not to say that everyone’s responded to SFN in the same manner. Most members of the SFN group did improve but the behavior of a substantial minority either did not change or actually worsened. Still, the demonstration that SFN can globally improve the symptoms of a subset of individuals with ASD was unprecedented.

Developments that followed publication of this study were also unprecedented.

Within a month, two major clinical trials with SFN involving individuals with ASD were commissioned by Governmental agencies. The first will be conducted at Rutgers University to completely replicate the original suforaphane trial with a new group of participants. The second allows continuation of Zimmerman and Talalay’s research. Similar methods will be used at the University of Massachusetts for measuring the effects of SFN in children with ASD, aged 3-12y. Additionally, tests will be applied for defining the biological basis for any improvement in the children’s behavior and mental functions. The former is scheduled for completion in 2022 and the latter in 2019. The results of these studies and others undertaken in the interim may show SFN to be the first effective treatment for core symptoms of ASD. They may also show that this hope was unjustified.

SFN used in research is not commercially available. Consuming commercial broccoli extracts or the plant as sold in markets would not be expected to achieve any beneficial effects.

Singh K, Conners SL, Macklin EA, et al. Sulforaphane Treatment of Autism Spectrum Disorder (ASD). Proceedings of the National Academy of Science USA 2014; 111: 15550-5

1

My Life Inside Peter Stoner’s chronicle of his early life in an institution.

Additional excerpts will be featured in future issues of the TriLine. By Peter A. Stoner† TV and Me A sad fact of life for most people who live in institutions is that television is a constant companion. During my adolescent years I was no exception; TV was the great escape from my institutional life.

Probably I could have used my time more constructively while growing up inside, but television was readily available, and frankly, for someone like me there weren’t a lot of options. Consequently, I admit to becoming a confirmed TV addict in those years, and for better or for worse, all my early role models came straight from TV. I became fascinated with the United Kingdom and all things British in the early 60’s, after seeing the series “The Invisible Man.” Another British series “Secret Agent” showed up in 1965. “Mission: Impossible” followed in ‘66, and then came “The Saint,” the man I wanted to be when I grew up. And who could help from falling head over heels in love with Emma Peel of “The Avengers”?

In late 1966, when the institution became wired for cable, it was possible to view what was known as “educational TV.” Soon Masterpiece Theater emerged on NET (later to become PBS) with a production of “The First Churchill” and in the summer of 1967, CBS introduced an unusual British series called “The Prisoner.” Even then I saw it as an ironic metaphor for institutional life. Here was an unnamed hero (“Number 6”) who found himself living somewhere he didn’t want to be for reasons he didn’t understand. His prison was a quaint English village, very comfortable, and with every modern feature imaginable. But he was not free.

In the summer of 1967, thanks to my father, I got my first television set. Soon thereafter I fell in love with an American TV sitcom “The Courtship of Eddie’s Father.” To this day I’m not sure why this was the one program I could never miss, but I suspect it might have had something to do with my longing for the family life I constantly fantasized about.

Given the way people with disabilities were viewed back then, and how disability

in general was depicted on TV, it became clear to me that this was a subject to be either completely ignored or to at best, be vanquished. The first person in a wheelchair I recall ever seeing on TV appeared in an episode of “Fury.” A disabled man was coached out of his wheelchair by Fury (a horse) to heroically rescue his own son from peril. By the end of the episode this man no longer had need of his wheelchair at all. His disability was never dealt with, so viewers saw only a helpless and pitiful guy confined to a chair, who through some miraculous circumstance cast it off and walked, thanks to a horse. So what was a young boy with severe cerebral palsy left to think? Should I hope to lose my wheelchair through some random miracle? I felt like they were telling me: “If you’re in a wheelchair you’re no good to anyone.”

In those years, TV became a fundraising vehicle for charities on behalf of “crippled” children. They would rent a local TV station for an all-day telethon, drag an adorable little kid with metal braces on her legs (usually a girl) on stage, and wait for the pledges to roll in.

The first true TV hero with a disability showed up in 1967 was “Ironside,” starring Raymond Burr. The main character, Robert T. Ironside, was a detective with the San Francisco Police Department before he was struck down by a sniper and was paralyzed from the waist down. In 1971, ABC introduced “Longstreet” a show about a blind insurance investigator. Neither of these programs addressed the actual problems of people with disabilities.

For example, the mobility challenges of getting around in a big hilly city like San Francisco were conveniently overlooked by the producers of Ironside. Few people with disabilities had a personalized van complete with a wheelchair lift back then as Ironside did, which in fact remains true to this day. In fact, in 1967 very few people even had a motorized wheelchair, making Ironside a disappointingly unrealistic hero.

Finally in 1967, PBS featured a program about the disabled Irish author Christy Brown as a way to publicize Brown’s new

Peter used his left foot to write

book “Down All The Days.” This was the first program in my recollection that depicted a person with a disability who reflected the actual experience. In the dramatization of one scene from the book, a young Christy Brown was shown spying on his older sister getting dressed. A person with a disability has curiosity and sexual feelings?

Shocking!

Later in this book I speak frankly about my early sexual experiences while living institutionally in the 50’s and 60’s. I have two reasons for doing this: One is to tell younger people with disabilities that their sexual thoughts and desires are normal and completely natural. The other is to help people in the so-called “normal” world understand that for people with disabilities, sexual feelings and desires are a reality to be accepted without shame or blame.

We humans without exception share a common need for intimacy, both physical and emotional. And sadly, for lack of understanding of this fact, countless people with disabilities end up living a fundamental piece of their humanity vicariously through television and movies.

Now that is a shame.

Peter Stoner authored numerous articles and essays on topics ranging from personal perspectives on disability to euthanasia and political action.

The above excerpt is from Peter Stoner’s “My Life Inside”. With the aide of a Dynavox communication device, Peter delivered public presentations locally, as well as testified on behalf of disability rights. Peter died peacefully in Spring of 2016 in San Luis Obispo. †Deceased 28 February 2016.

Fall 2016 | 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

Appreciation of Support of our System As the 2016/2017 California State Budget was signed in June 2016 by Governor Brown, I breathed a sign of relief. We had finally made progress in shoring up our system with funding for both the Purchase of Services and the Regional Center Operations budgets.

Service providers will be able to manage their agencies with accommodation for minimum wage regulation, supported employment services will be buoyed up by rate increases and incentives for people to stay employed. A wide range of negotiated services have received rate increases that allow for staff to be hired and may lead to higher retention rates for provider staff. These are a few of the impacts we are seeing from the additional funding.

Benefits of Technology We are so fortunate to be

living at this time of rapidly evolving technology available to be adapted to the communication needs of people with disabilities. I enjoyed reading the article in this TriLine, First Voice: Finding Ways to Communicate. My own son has benefited from the use of an iPad. It is helpful in meeting every day needs for communication. The efforts of our service providers to pair iPads with applications for communication, as well as the testing of “think the message” hardware, are fascinating. I’m so enthusiastic about the potential for all individuals who can access this technology for a better quality life.

Promising Prospects for Employment I would like to extend a warm welcome to Joey Carroll in her new role as Employment Coordinator. This is an important position in support of the development of new opportunities for job seekers in our community.

New Hope from a Difficult Transition Life transitions can be difficult even in the best circumstances.

Camden Ring’s new beginning

of life in the community, moving from a Developmental Center, offers a glimpse into a brighter future.

What’s Next …

The Waiver Application for approval of Self Determination Services is in the process of final evaluation by the Center for Medicare and Medicaid (CMS.) DDS will be re-submitting the Waiver application based on questions received from CMS by February 2017.

TCRC is looking forward to implementing Self Determination Services as soon as Federal approval is received by DDS. Advocacy is Always on our Mind We are not complacent about the new financial support for our system. The efforts of many make a difference. Talking to legislators, using your vote to put people in office who understand the importance of funding programming for individuals with developmental disabilities, staying informed about legislation in process - these are all ways to continue the important work of advocacy.

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 Ada Gonzales Michael Kaszycki Howard Kraus Ralph Morales Susan Rasmussen Robin Rosso

2017 Upcoming Board Meetings Feb 3............................6:00 pm (SB) Mar 4............................9:00 am (SB) May 6.......................10:00 am (SM) June 3.....................10:00 am (OX) July 8........................10:00 am (SV) 2017 Upcoming Town Hall Meetings FEB 15.......................................... SLO Mar 15............................................. SB May 24............................................ SV July 12........................................... SM Sept 20.......................................... OX Oct 11....................................... ATAS