A Publication of Tri-Counties Regional Center | Spring 2019
Persistence Pays: A College Success Story by Steve Crusinberry
Cover Story 01 Persistence Pays: A College Success Story Featured Articles 03 Oxnard Peace Officers Wear Commemorative Patch to Support Autism 03 Tech at TCRC: Move To the Next Level of Service Delivery 05 NCI Affiliates Celebrates 40th Anniversary 05 “Breaking the Dawn” Club 06 Right Now I Stay With You 14 Neuroinflammation In Autism Spectrum Disorder: Enter Pioglitazone 15 Fernando’s Initiative 15 Visit Disneyland at a Discount This Fall 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.
Cal Poly student, Ashley Romero
Spring-time is an exciting time for high school seniors. It’s the time of year that colleges send out their acceptance letters and prospective students anxiously await news from their favorite schools. For students with developmental disabilities and their families, this time of year can be especially difficult. Students pursuing higher education will find the support systems that they have been accustomed to in public schools vanish after high school, leaving them feeling adrift and alone as they try to navigate through the unfamiliar morass of higher education. continued on page 4 Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D. After an eventful Winter, this Spring starts a cycle rich with potential. Self-Determination has hit major milestones, and we’ve seen progress on the rate study for Service Providers. On January 10, 2019, newly inaugurated Governor Gavin Newsome announced his first annual State Budget Proposal. The proposed Budget for Fiscal Year 2019-2020 includes plans for expansion of health care, education, childcare, full day universal pre-school, early intervention screening, CalWORKS, homelessness solutions and other programs. Preparation for a potential economic downturn and recession in California is in the structure of this Budget Proposal that includes increasing “rainy day” reserves to 15.3% from 13.5% of the previous year. The Governor is emphasizing increases for one time spending rather than supporting ongoing spending measures. The Fiscal Year 2019 - 2020 State Budget proposal allows for a total of $7.8 billion for developmental services with $7.4 billion allocated to regional center community based services and supports. Funding would support services for 349,606 individuals in the community, an increase of 16,512 individuals over the current year. Funding for the regional center system is proposed with an increase of $506.2 million, compared to the updated current year budget. Purchase of Service (POS) funding for caseload and utilization growth is proposed at $307.9 million and Operations (OPS) funding at $31.3 million. Important adjustments in the 2019 - 2020 proposed budget include allocation of $5.5 million for monitoring of specialized homes by a licensed nurse or behavioral specialist, start-up funds of $4.5 million to develop three community crisis homes for children, $11.7 million operations funding for STAR (Stabilization, Training, Assistance, and Reintegration) Homes and addition of a third Crisis Assessment Stabilization 2 | TriLine | Spring 2019
Team. Specialized Caseloads will be funded for a 1:25 ratio of service coordinator to individuals served to support community living in the least restrictive setting. Other proposed funding includes an increase of $159 million to support the impact of the minimum wage increase from $11.00 to $12.00 per hour for the entire calendar year. In 2020, California minimum wage will increase from $12.00 to $13.00 per hour. The Governor’s Budget proposal re-instates a Statewide 14 Day Mandatory Uniform Holiday Schedule as of July 1, 2019. This measure was originally intended to save money during the recession of 2009. As frozen rates and increasing operating costs impact service providers, this translates to a rate cut. Direct service professionals working for minimum wage will experience this as unpaid days off work. Individuals who require support at work and families who rely on services to manage their own work schedule will be impacted as well.
The Department of Developmental Services (DDS) notified the community in February that recommendations from a study of service provider rates would not be submitted to the Legislature by the deadline of March 1, 2019. Draft rate models and methodologies were presented in two briefing sessions, in Sacramento on February 25, 2019 and in Southern California on February 28, 2019. Information from those rate study briefings can be found at the Burns & Associates website, consultant to DDS for this work, at http://www.burnshealthpolicy.com/ DDSVendorRates/ These briefings include references to assumptions for draft rate models for direct care worker wages and a report about the methods used to
establish regional cost adjustment factors. DDS has posted a place for comments on the website, including instructions, a template and an FAQ for public comment. The Lanterman Coalition, which includes ARCA, is advocating for an 8% “downpayment” on a rate increase as the results of the study are evaluated. ARCA is seeking the same for the regional center service coordination and related supports budget. The application for federal funding, or “Waiver,” submitted to the Centers for Medicare and Medicaid Services (CMS) was approved on June 7, 2018 for the Self-Determination Program (SDP). This program aims to provide people receiving services and their families more freedom and control over how services are provided and by whom. In January 2019, regional centers received a directive from DDS about the requirements for determining Individual Budgets and how the funds can be used. After 57 informational meetings held by TCRC between March and September 2018, 342 individuals submitted their names to the DDS interest list. Individuals selected were notified by DDS last October. TCRC has an online presentation about the program at https://www.tri-counties. org/self-determination-program/. Individuals selected for Self-Determination are now participating in orientations to learn about Individualized Budgets, Fiscal Management Services, the role of the Independent Facilitator and person centered planning. This Spring DDS conducted "train-the-trainer” sessions for regional center staff and Self-Determination Advisory Committee members. TCRC sent twelve staff to attend sessions along with committee members. It is promising to see Self-Determination underway and our advocacy around Service Provider rates paying off. We will also be re-visiting our local legislators. Let us know if you’d like to join. I will personally attend budget hearings in Sacramento. And am ever grateful to our Board, staff and partners who are with me every step of the way.
Oxnard Peace Officers Wear Commemorative Patch to Support Autism by Heather Wennergren
The Oxnard Police Department has partnered with the Autism Society of Ventura County to celebrate and raise awareness for Autism. They designed a commemorative police shoulder patch that some of the officers will be wearing during the month of April. They will be selling patches, t-shirts and pins to the community to raise funds for the Autism Society of Ventura County. The idea sparked from a previous fundraiser the Oxnard Police Department did with the American Cancer Society. Some
of the officers have kids with special needs, so raising awareness around Autism was well received by the police department. Sergeant Jeff McGreevy is the Neighborhood Policing Team Supervisor and Crisis Intervention Training & Trauma Support Team Coordinator for Oxnard PD. He sees the patch as a relationship building tool and hope it starts a conversation. Sergeant McGreevy adds "We care about what's happening in our community and we want to show support for people with Autism and their families".
to have an autism awareness shoulder patch. They are still seeking donations from local businesses to make this project successful. Learn more about the fundraiser by following Oxnard PD on FB and twitter. www.facebook.com/OxnardPD www.instagram.com/oxnardpd1903 twitter.com/oxnardpd1903 www.youtube.com/channel/ UChZ7J5hdp4jW_SK6tdSJfVg
In his role as Crisis Intervention Training Coordinator, Sergeant McGreevy confirmed that interacting with people who have autism is part of a 40 hour training block for the police. He's pleased that around 80% of Oxnard officers have been through the training and will continue to strive toward the goal of 100% completion. Oxnard PD will be the first law enforcement agency in Ventura County's history
Tech at TCRC: Move To the Next Level of Service Delivery Smartphones and their apps change the way we all work and play. We use our smartphones for many different things and TCRC does too. Our goal is to provide the best services to our stakeholders in the most efficient way possible. The tools below allow us to work in new ways while not giving up traditional paper processes.
ELECTRONIC SIGNATURE In 2015 TCRC implemented electronic signatures (DocuSign) to gather information and approvals. We have processed over 400,000 documents since then. Using DocuSign, 37% of those documents are completed in under 1 hour, and 65% in under a day. The faster we can complete approval processes the faster we can refer and provide services.
DOCUSIGN If you have not used DocuSign with TCRC ask to sign your next IPP electronically. You won’t need a DocuSign account, simply add a password to your email login so we can verify your identity. Using electronic signature is fast and secure and can be done on any smartphone or device with internet access.
STORING CASE RECORDS ELECTRONICALLY ECHARTS
All of our records are stored electronically in eCharts. This system also gives us the flexibility to send records securely. We do not keep printed records permanently so there’s less chance that papers will get lost or stolen.
CLOUD STORAGE - BOX.COM
The use of box.com enables TCRC to share files with others in a safe and secure environment. Files are shared inside Box
where the files are encrypted using the highest levels of security. This type of sharing allows us to keep track of who has access to files and manage the permissions automatically.
TEXT MESSAGING WITH TCRC Our staff can communicate with you using text messaging. No more missed phone calls or telephone tag to exchange information. Our staff can exchange information with you directly and efficiently using your regular texting app on your phone. No need to make a voice call. Ask your Service Coordinator about text messaging! If you aren’t familiar with these ways of working with TCRC and would like to learn more, just ask for an introduction to these time saving tools.
Spring 2019 | TriLine | 3
Persistence Pays: A College Success Story
...continued from cover
by Steve Crusinberry
One such student is Ashley Romero. Ashley is a college student at Cal Poly San Luis Obispo, she also has a developmental disability. Ashley faced all of the traditional struggles that students face after high school: filling out applications, writing essays, worrying about financial aid, and finding the right school. But these normal struggles were compounded by Ashley’s other needs, primarily being able to maintain her support team. Ashley was accepted as a student at California State University, Stanislaus. However, the campus was far from home. Perhaps too far, Ashley thought, from her support system and therefore outside her comfort zone. She felt that she needed to stay closer to home. Her local school of choice was Cal Poly. Ashley liked what Cal Poly had to offer and it was close enough to home for her to get the support needed. Even though Ashley had a high gradepoint average and was readily admitted to Cal State, her application to Cal Poly was declined, twice. This is a disappointment faced by all students. College enrollment is heavily impacted in California and acceptance is uncertain for even the best students. But Ashley is not the type of person who easily gives up and she moved on to her alternate plan and enrolled in Cuesta College, a local community college. Ashley was very successful and excelled at Cuesta. She majored in sociology and earned her Associates degree in two years. Ashley wanted to finish her college education with a Bachelor’s degree in sociology so she applied once again to Cal Poly but her application was sadly and inexplicably turned down again. Ashley is an incredibly tenacious self-advocate and she turned her disappointment into action and filed an appeal to have her application reevaluated. She didn’t have much hope because Cal Poly only admits about 3% of students on appeal and her chances seemed very remote. “Everybody told me that appealing was a big waste of time” she said. But she proceeded with the appeals process and much to her surprise, Ashley’s appeal was successful and she is now currently enrolled at Cal Poly and on track to graduate in June. 4 | TriLine | Spring 2019
Ashley used her own experiences in school to create her senior project on self-advocacy. She crafted a brilliant PowerPoint presentation and has been presenting it to student groups at both Cuesta College and Cal Poly. Her presentation has been so well received that professors have invited her to speak to their classes about her journey through academia and the challenges that she faced and overcame. According to Ashley, “Disabilities are not really talked about much on campus and it was interesting to see people’s reactions to my story.” The students that she spoke to were really enlightened by the presentation. Many Cal Poly students approached Ashley after seeing her presentation and asked how they could help advocate for students who need extra support. “It was awesome to get people’s response and see how the students want to make college a better environment for students with disabilities,” she said. Ashley not only attends college, but she is also working on campus at Cuesta as an instructional aid for Carol Lopes. Carol is the instructor for Disabled Student Services at Cuesta College. Ashley got the job through the Paid Internship Program through TCRC and PathPoint. She and Carol co-teach a course on “soft skills.” Soft skills encompass everything from interpersonal skills to academic skills. Carol clarifies, “All the skills that help people be successful in employment or life. Ashley has amazing skills and I really depend on her. She has such a wide range of aptitudes, tech skills, interpersonal skills and a really good instinct for what people need and how they need to get it. I know Ashley will be professionally successful at whatever she does.” After graduation Ashley would like to work helping others. “I decided when I was at Cuesta that I wanted to work in social services,” said Ashley “because I know it can be challenging to get the right services and I want to help others as much as I can.” One career choice she is considering is becoming a social worker at a hospital to help people with disabilities navigate the medical system. “I really do want to help people with disabilities,
Ashley presents to a classroom
that is my main goal” said Ashley. “I want to be a voice for people who have difficulty speaking for themselves.” After gaining a year of work experience Ashley plans to go back to school to get her Master’s Degree in social work to be an even more effective advocate. Much progress has been made in academics for people with disabilities. Fifty years ago people with intellectual or other disabilities were often kept at home or in institutions but thanks to the 1975 Individuals with Disabilities Education Act (IDEA), today more than 90% of people with disabilities go to public schools. However once students move into the arena of postsecondary education, they lose many of the benefits of IDEA that they may have relied on such as having an Individual Education Plan (IEP). Different colleges have different resources and it’s good to be prepared to advocate for these services. In college, the ability to self-advocate is a vital component to successfully access available services. In the public education system, students who may need services are identified by school staff. In higher education, you must self-identify and request services yourself. Knowing your rights and responsibilities will be essential to chart your own future and prepare for independence and success. According to ThinkCollege.net, a federally funded national organization dedicated to promoting college opportunities for developmentally disabled people, there are currently 265 college programs that help developmentally disabled students
"...Reach for your dream and fight for what you want, even if it’s hard...” prepare for employment. That is a huge jump from just 25 programs in 2004. Even with improved access and services for people with disabilities, families need to be prepared to travel through an entirely different landscape than what they were
accustomed to in public school. According to Ashley, it is possible to achieve success. “I had people tell me that I could not get into college and that I could not get a degree, but I would say to not let those barriers get in your way. Keep fighting for
yourself and get help from your support team to make it happen. Reach for your dream and fight for what you want, even if it’s hard. My journey was hard, I could have stopped but I didn’t stop, I kept going. It’s taken a long time… but I’m still going.”
NCI Affiliates Celebrates 40th Anniversary NCI Affiliates is excited to celebrate their 40th anniversary this year! Over the last 40 years, they have continued to expand, with programs from Atascadero to Monterey, and work hard to help people achieve their personal and professional goals. Currently, NCI currently offers a variety of programs and services, including Activity Center Program, Community Based Day Program, Work Activity Program, Supported Employment Program, Individual Placement Program and Community Living Services (both ILS and SLS).
At the time, Emilio lived with family and with the help of the CLS team, Emilio was
NCI has been helping Emilio build his independence and self-confidence. In 2016 Emilio began working with the Community Living Services (CLS) department.
able to find his own place to live and move out into independent living. The CLS team was there to support Emilio through the transition and help him with his budgeting
and money management. Shortly after, Emilio shared with his support team that he was ready to find employment in the community so he began working with a job developer and within just a few months, Emilio was offered a position at Lowe’s in Paso Robles. With the support of his job coach, Emilio was able to maintain community integrated employment and continue building upon his work skills. Emilio has now been with Lowe’s for over a year and a half and was just recently offered the opportunity to become forklift certified and was offered a full-time role at Lowe’s. Many thanks to NCI Affiliates for 40 years of service to our community, helping people like Emilio reach their goals and have a quality life in their communities.
“Breaking the Dawn” Club By Linda Miyahira, M.S., SCII There I was, sitting on the edge of my son’s bed, glancing at photos on his dresser in the faint pink glow of a Himalayan salt lamp which illuminated his room at 3am. I wanted to cry, but a slight laugh emerged from me instead. Even the dog had initially followed faithfully to my son’s room but eventually left, exhausted, to the comforts of his own cushy dog bed. How many times have I been woken suddenly from a dead sleep to the loud vocalizations emanating from my almost 23 year old boy; this restless child trying to find his special, calming rhythm of sounds that will get him back to that much-needed REM sleep. There I am, trying to regulate him through an initially calm voice, escalating to higher pitches out of sheer frustration and exhaustion. I know that I am not alone in this experience. As both a service coordinator and the parent of an adult child with serious sensory integration issues, I know that this scenario
is all too familiar for many of our TCRC families. The fussy infants have now grown into the larger dysregulated teens and adults who still require our attention in the middle of the night. Sometimes sleep techniques work, and often they don’t. It can leave a caregiver feeling very alone and depressed.
with the strength and stamina to withstand the night-watch and function on very little sleep during the day can attest that it’s not a club for the faint of heart. It is, however, a club for the hearts of love, and that is what keeps all of us and our children moving forward to conquer another dawn!
I decided to write about this because I want to remind those who are experiencing the highs and lows of parenting a child (whether infant, teen, or adult) with a special need, that they are not alone during those very solitary moments. As you sit on the edge of those restless beds, half comatose, watching the rooms become brighter as the morning light peaks through the threads of curtains or blinds, know that there are other parents across town also watching that same dawn rising and pondering life because their child has also kept them awake all night. Like it or not, we’ve been initiated into that ‘breaking the dawn club’. Only caregivers
Linda wishes on a good luck elephant for Ronan to sleep
Spring 2019 | TriLine | 5
Right Now I Stay With You by Patricia Forgey
"My life didn’t begin until the day he was born,” said Christine Gorgita about her son Manny. Christine’s life represents that of thousands of parents on our Central Coast who have faced the event of a child born with a disability and then care for their child while making a living, running their household, and providing a community life for their child.
a natural for her. Her work at UCSB right now involves managing information rather than people in such a direct way. Interviewing Christine at work showed her strength of character. The door to her office was completely covered with valentines and hearts, including a “Welcome Back” from a recent hiatus to support Manny’s urgent medical needs. The week of February 6th, Manny became critically ill with repetitive seizures. He was transported to Cottage hospital and was on breathing support. Christine stayed by Manny’s side, while he was under sedation. She was there when he started to wake up and fuss about all of the tubes. “I almost lost him,” Christine reflected with a shake of her head. She was also in the emergency department with Manny because of a seizure again last week.
Manny with his "wheels"
Christine Gorgita decided immediately, when notified by a physician in the Neonatal Intensive Care Unit that her son would not be walking or talking, that she would prove him wrong. Manny was diagnosed with complete agenesis, or absence, of the corpus callosum. The corpus callosum is the band of white matter that connects the two hemispheres in the brain, transferring motor, sensory, and cognitive information. Christine’s described her response to the diagnosis provided by the physician. “I took an indignant stance - I looked the doctor up and down - and said ‘I’m going to prove you wrong!’ He had challenged me when he told me that.” And challenging Christine is not a light matter. After serving as an EMT in Texas, Christine returned to her native Santa Barbara and took a post as Booking Officer at the Santa Barbara County jail. Her jobs have required steadfast and strong responses and it’s clear that being Manny’s mom is 6 | TriLine | Spring 2019
Manny is an active eight year old boy speaking in up to ten word sentences, with a complete love of the outdoors, of riding his two wheel bicycle or electric scooter, careening around his yard, and playing with his cousins. Manny started his day on the day I met his mom, running in a “Move a Thon” at school. In chilly 49 degree weather, his mom and his grandparents were there to cheer him to the finish line.
Manny meets the Harlem Globetrotters
Manny has many interests and experiences in the community, thanks to Christine. He loves to ride his razor electric motorcycle. Christine’s father, Manny’s grandfather, put training wheels on the motorcycle for Manny. “My buddy can’t be without wheels!” was his grandfather comment when noticing that his cousin had moved up to the next size. Manny also learned to ride a two-wheel bicycle without training wheels.
Asking Christine to describe her son brings a brilliant light to her face. “He is very loving, very thoughtful of people - wants to make people smile.” He also struggles with the concept of stranger danger, something that worries his Mom. “He has asked complete strangers to come to the house for sleep overs.” Christine described one of Manny’s special traits, “Manny has a really great super power! He knows everybody’s names - - remembers everyone’s name at camp.” Manny is thoughtful of the experiences of other children, and his mom. If a child at school has a fall, he’s there to assist. Manny greets his mom after her day at work, asking about her day, the graduate students, and the professors! He attended summer day camp at UCSB last year and thrived.
Manny tries to catch dinner
"...That family is not letting the diagnosis rule his life - he is going to rule the diagnosis.”
Manny & his Mom get face paint on 4th of July
Manny enjoys fishing, music, and anything outdoors. Special tickets got Manny introduced to the Harlem Globetrotters last year and he saw the Chinese Lions at UCSB. When Duncan the Dinosaur was at Paseo Nuevo Shopping Center, Manny met him and got a photo in the Santa Barbara NewsPress. Face painting is a favorite at the 4th of July celebration at the Lions Park in Carpinteria. When Big Bounce of America shows up at Elings Park, Manny is there too! With Manny’s love of the outdoors and lots of activity, his mom takes him camping every year at Shaver Lake. Manny is soon to be an international traveler as well, flying to Tuscany with his mom in the fall. And to prepare him for air travel, Manny and his mom will be making a trip to Texas in the summer. Christine is sure that her son will be his typical social self, “He will be talking to everybody on the plane!” Manny hit developmental milestones gradually, then quickly acquired more skills. He used one-word responses at four years of age, but moved to short phrases right before his 5th birthday. Manny and Christine listen to old school funk music, his favorite song being "Brick House" by the Commodores. Manny learned to sing along with his mom to “Car Wash,” emphasizing the “woah woah woah!” Similar to
Christine & Manny in the ball pit
his speech and language development, on the mobility front, Manny waited until 20 months to walk and then at 21.5 months started running! Manny attends public school, spending seventy percent of his time in a typical classroom and thirty percent in a special education classroom. Each year the mainstream time is greater and the goal is for Manny to be in typical classroom full time. “I decided that I was going to raise Manny just like a friend of mine is raising her child with Down Syndrome. This child has chores and is an active part of the family life. That family is not letting the diagnosis
rule his life - he is going to rule the diagnosis.” And that is how Christine and Manny are living their lives together. Christine has advice for other moms, “It’s going to be okay. It won’t be hard like this all the time. You are going to have your ups and downs. Grasp the ups, embrace them and they’ll carry you through the downs. It’s not easy but nothing in life that’s worth it is easy.” Christine’s hopes and dreams for Manny are typical of an engaged and loving parent, “I tell him everyday - there’s nothing you can’t do if you put your mind to it. I want him to be happy with whatever he chooses in life.” Manny listens to his mom - and then lets her know “But right now I stay with you.” Spring 2019 | 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 ~ Patty Moore at 805-683-2145 pjmoore@alphasb.org Santa Maria ~ Norma Puga at 805-347-2775 npuga@alphasb.org Lompoc ~ Mariana Murillo at 805-453-7739 mmurillo@alphasb.org Early Start Playgroups ~ Discussion, networking and crafts. Location varies. 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 805-347-2775 Santa Barbara 805-957-9272 “Katie’s FUNd™ ~ provides social and recreational opportunities for teens and young adults with developmental disabilities. Katie’s FUNd meets weekly for fun outings & activities throughout the Santa Barbara County. Katie’s FUNd is divided into a teen group, Teen Extreme, along with a young adult group, EXPO. We have availability in Teen Extreme, ages 13-22 and a current wait list for EXPO. For more information regarding Teen Extreme or if you would like to be added to our EXPO wait list, please contact Amy Buesker at 8058 | TriLine | Spring 2019
683-2145 x127 or abuesker@alphasb.org. Alpha Adult Services ~ provides a broad spectrum of services for adults with developmental disabilities. Each participant assists in the development of individualized services tailored to achieve his or her personal goals. 805.964.3547. Call Alpha for Monthly 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. PARENT-TO-PARENT SUPPORT Sponsored by Special Needs Network. Meets at noon on the 2nd Tuesday of every month at A Street Cafe at VTC, 2445 A Street, SM. Contact: Diana 805-264-2434. SANTA MARIA SPECIAL EDUCATION & SUPPORT INFORMATION Kathy Rowley hosts a Yahoo Group for parents of children with special needs who live in Santa Maria. Join at http://groups. yahoo.com/group/santamariasupport. AUTISM SOCIETY OF AMERICA SANTA BARBARA CHAPTER (ASASB) Contact: Marcia or Sandy at 805.560.3762 or info@asasb.org, www.asasb.org. SANTA MARIA AUTISM SUPPORT GROUP Has an online support group for parents of children diagnosed with autism. There is also a weekly playgroup that meets at a local park. Contact: 805.714.1187 or email begeasykr@yahoo.com. NEW DIRECTIONS SEEKS VOLUNTEERS
Tour Guide/Chaperones needed for group travel vacations for adults with IDD. All expenses paid with a daily stipend. Fill out our online application on our website! www.NewDirectionsTravel.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. 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 http://www.sbch.org DOWN SYNDROME ASSOCIATION OF SANTA BARBARA COUNTY (DSASBC) Down Syndrome Association of Santa Barbara County, Contact Melissa Fitch at Melissa@dsasbc.org or (805) 886.4411, www.DSASBC.org Like us on Facebook @ DownSyndromeAssociationOfSantaBarbara ~ follow us on Instagram @DSASBC PARENT TO PARENT SUPPORT MONTHLY HAPPY HOUR For parents, caregivers, teachers & family of all those in our community- all abilities, everyone is welcome! 3rd Tuesday of every month 4:30-6:30 at The Creekside Restaurant & Bar 4444 Hollister Ave, Santa Barbara 93110. Drop by any time ~ Child care available contact (805) 886-4411 10TH ANNUAL DSASBC BUDDY WALK AND FESTIVAL
Saturday, June 8, 2019, Chase Palm Park Great Meadow, Santa Barbara Volunteer, Fundraise, Sponsor. Contact Melissa at (805) 886-4411 or Melissa@dsasbc.org Register online at www.dsasbc.org 10TH ANNUAL HOE DOWN DINNER DANCE PARTY - OCTOBER 2019 Santa Barbara Carriage Museum – Join us as we honor the “Extraordinary Educator of 2019” and Celebrate Down Syndrome Awareness Month at our annual dinner dance party! Dinner, Dancing, Games, Silent Auction and more! Con-tact melissa@ dsasbc.org for details DSASBC VALENTINE’S DAY DINNER DANCE PARTY Goleta Valley Community Center February 2020. Dinner and dancing for ALL! Contact melissa@dsasbc.org TEEN EXTREME ACTIVITY CLUB Teens 13-22 meet weekly – sign up with Sydney at www.alphasb.org. HORSE RIDING LESSONS Hearts Adaptive Riding Center; For schedule and details: www.heartssb.org. ARF READ TO A DOG Tuesday, 3:30 pm 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 teers for fun activities at parks in Santa Barbara. Check website for dates and details. Some Scholarships available: www. PeerBuddies.com
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.
YOGA FITNESS Inclusive of ALL abilities, siblings, friends, parents – everyone welcomed! Year round @ Carrillo Street Gym, 102 E Carrillo, SB. $8. Drop in fee or Series fee. SB Parks & Rec. DANCE CLASSES FOR KIDS & TEENS OF ALL ABILITIES Thursdays 4:30– 5:30 pm ongoing variety class @ Carrillo Rec Center downtown; and NO LIMITS scheduled for all abilities with SB Dance Arts. Contact Elizabeth at 805/966-5299. NEXT CHAPTER BOOK CLUBS Teens & adults with intellectual disabilities meet weekly with peers and 2 volunteer facilitators to discuss a chapter each week to dialog, develop social skills and friendships. SWIM LESSONS Cottage Rehab Pool; UCSB, YMCA, Wendy Fereday, SB Swim Club, Swim with Phyn, Dos Pueblos High School, Vista de Monte, AND more. www.kidsswimclasses.com
EXPO SOCIAL CLUB Adults 22 & up meet for weekly activities and outings – Sign up www.alphasb.org PEER BUDDY “SOCIAL SKILLS”. One on One sessions pairs volunteer of similar age with child for 1 hour fun activities at a variety of community locations. Scholarships available: www.PeerBuddies.com. PEER BUDDY “SOCIAL SKILLS” Groups and Camps: Similar aged volunteer is paired with your child to engage with other pairs of children and volunSpring 2019 | 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. 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 PARENTS & CAREGIVERS OF PERSONS WITH AUTISM “GET TOGETHER” (ENGLISH & SPANISH) Date varies, please call for details. Meets from 7:00 PM - 8:30 PM in Oxnard, groups meet separately for English and 10 | TriLine | Spring 2019
Spanish. 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. DOWN SYNDROME SUPPORT DOWN SYNDROME SUPPORT GROUP (SPANISH) Meets last 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. EPILEPSY SUPPORT EPILEPSY SUPPORT GROUP (ENGLISH & SPANISH) Meets first Thursday of the month 7:00 PM - 8:30 PM in Oxnard. Parents meet to share their experiences, resources and information. SUPPORT FOR ALL NEEDS SIMI FRIDAY NIGHT GROUP (ENGLISH) Meets 1st Friday of the month 7:00 PM – 8:30 PM at Tri-Counties Regional Center in Simi. Share the joys, concerns, and sometimes unusual humor that come from raising a kid with special needs. Parents are an amazing source for information, strategies, and resources. COFFEE & CONVERSATION (ENGLISH OR SPANISH) Coffee with Rainbow is happening all over the county. Call and find out what community we are in this month. Invite us to your community for connecting and sharing. SUPPORT FOR THOUSAND OAKS WITH CONEJO RPD (BILINGUAL) On the first Monday of the month, a resource parent represents Rainbow Connection at Old Meadow Center in Thousand Oaks as part of the Therapeutic Support Program with Conejo Recreation and Parks Department. Our representative provides support, information, education & training, and remote access to our lending resource library. 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 and
resources. *NEW* FOR PARENTS OF CHILDREN AGE 3-21 YRS* SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets last Tuesday of the month 6:30 PM – 8:00 PM in Oxnard. Parents of children ages 3-21 years with different special needs, meet to share their 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 resourcess. “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30 AM – 10:00 AM at Teague Park in Santa Paula. Families of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources. SIMI SPECIAL PARENTS NETWORK (ENGLISH) Meets 3rd Tuesday of the month 9:30 AM – 11:00 PM in Simi Valley. Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs. INFORMATIONAL “ONE - PAGER” 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. 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. 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. This is a good opportunity to talk with Rainbow staff and other parents who are going through transition! Call Rainbow Connection for more information. 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,
Ventura County
Swim Lessons, Community Gardening and Braille Institute. For information call Maria Sandoval 805-385-8019/ or Direct Line- 805 385-8020. CONEJO RECREATION AND PARK DISTRICT'S THERAPEUTIC RECREATION IN THOUSAND OAKS Children and adults from all over the County attend activities. 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 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. 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
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. To speak with a parent mentor on the phone call 805-496-1632. For more information http://www.autismventura.org/events/
VENTURA COUNTY
AUTISM SOCIETY VENTURA COUNTY PARENT SUPPORT A partnership with The New Beginnings Center Counseling & Integrative Health to provide a FREE supportive environment for loved ones of all-aged children, adolescents or young adults who have been diagnosed with Autism Spectrum Disorder. RSVP Highly Preferred: Grant LaVigna (805)987-3162 ext.3 Childcare available. 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 and Facebook https://groups.yahoo.com/neo/groups/ venturacountyautismtalk/info 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. 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 (Continued) Spring 2019 | 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.
Peplinski with any questions, to RSVP and for directions. Space is limited. 805-8443003 traci.peplinski@gmail.com EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month – Meeting location Varies Support group for active and retired military families with children with special needs. For information please Contact: Scott Council, Military Liaison for Special Needs, at 805-982-2646 or scott.council.
ctr@navy.mil 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 Grover Beach PHP Library (Open by Appointment), 940 Ramona Ave, Suite M, Grover Beach 12 | TriLine | Spring 2019
PHP SPONSORED EVENTS **For ALL PHP events please RSVP to php@ucp-slo.org or call 543-3277. 0-5 SUPPORT GROUP PHP is gathering input for a new support group for parents of young children 0-5 with medical needs such as seizures or specific genetic diagnosis 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 hour. Contact 543-3277 or php@ucp-slo.org GET CONNECTED SUPPORT GROUP Come in to our offices with or without your children to meet other families and learn more about our resources. Support Group for parents of children 0-10. SLO and Atascadero. 2nd Wednesday of every month from 11am-12 pm *Evento en Español* 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: 3rd Tuesday of every month. Tuesday, April 16, from 10:30-11:30 am. PHP Library, Atascadero I HAVE A VOICE “I Have A Voice” People with disabilities are especially vulnerable to crimes of abuse
which can include physical, sexual, financial or neglect. Join PHP for a presentation by Victim’s Witness Assistance Center and learn about: Victim Rights, Access Advocates, Navigate the Justice System, Support Victims, Assistance for Victims with Disabilities. May 1 from 6-7:30 pm in Pismo Beach UCP SPONSORED EVENTS TEENS CLUB Join UCP’s newly revamped Teens Club for a movie! Participants pay $30 and that includes transportation and food! For more information call UCP at 805 543-2039 or email us at: contact@ucp-slo.org. See you there! (805)543-2039 or email us at: contact@ucp-slo.org. 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 5:30-6:30 pm at the UCP SLO Office, 3620 Sacramento, Suite 201. Call Laura to Reserve YOUR Space for either group: 805225-6101 or email artsforliving@ucp-slo.org LOCAL EVENTS INDOJAX SURF CAMP for Special Needs Children. Today we open registration for our 2019 camp to be held July 23-24-25 in Cayucos, CA, 9:00am to 12:00pm, all three days. Indo Jax Surf Charities will supply all equipment (surfboards, wetsuits, life vests and professional instructors). We do have to limit registrations to 25 participants and request a donation. To register click on the following link and scroll down and click on Cayucos camp: https://indojaxsurfschool.com/outreach. php ONGOING EVENTS THE LENS HOUR LENS consultants, Dr. Marcus Shira and Ms. Diana Ringer will be available at the San Luis Obispo Parents Helping Parents library the 4th Friday of each month at 11:00 a.m. The time will be devoted to an open discussion on any questions parents would like to ask. It will also be an opportunity for creative collaborative thinking in a casual, confidential and positive climate. RSVP to Dr Shira at 541-8561 or Ms Ringer at 9757560 CENTRAL COAST AUTISM SPECTRUM CENTER (CCASC) Details for many events including gym days at Central Coast Gymnastics, Autism Night at the Paso Robles Children’s Museum, park dates, South Country support group and more can be found at www. sloautism.org 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 7-25. The goal of the program is to empower with independent living skills, physical activity and fun! Siblings and/or aides welcome
Ages 7-12 11:30-12:30. Ages 13+ 1-2 pm. Saturdays. San Luis Obispo. Siblings/aides welcome. Contact April for more information 543-8235. alewallen@sloymca.org ASSISTANCE WITH CHILDCARE COSTS For families who meet the income requirements and have children ages 0-12, CAPSLO Childcare Resource Connection is now accepting applications for assistance. For questions call (805) 541-2272 APPLY @ https://goo.gl/PFZu3z 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. Free or more information and to register, call Henry Herrera at (805) 4403516 *bilingual 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) 546-3100, 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.
SAN LUIS OBISPO COUNTY
San Luis Obispo County
WHEELS TO WATER Empowering people with disabilities through adaptive kayaking. www.wheelstowater.com, (608) 514-3843 Morro Bay CURIOUS PARENT FORUMS & SUPPORT GROUPS South County Youth Coalition partnered with Parent Connection are pleased to provide San Luis Obispo - South County residents with Curious Parent Forums and Support Groups in the 2018-2019 school year! Topics ranging from: Childhood Nutrition and Feeding, The Dance of Attachment, Raising Bright Courageous and Strong Children with Dramatic Play, Why Reading Matters and How to Get Kids to Love It. Arroyo Grande Library. For registration call Rubi Cuevas at 474-3000 ext.1229 or email rubi.cuevas@lmusd.org. Childcare provided and refreshments served. Free 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. 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. 2 Fridays of the month, 9am – 11am, Oceano Family Resource Center1511 19th St. For questions, call Ximena: (805) 462-7135 or 431-2291 Spring 2019 | TriLine | 13
Neuroinflammation In Autism Spectrum Disorder: Enter Pioglitazone by James O’Hanlon, Ph.D., Psychopharmacologist In 2005, neurologists at Johns Hopkins University published a postmortem study comparing 11 individuals with ASD and as controls, 11 typically developing individuals.1 Groups were matched with respect to age at death, 5 to 44 years. All of the autistic brains but none of the control brains showed unequivocal signs of chronic neuroinflammation that varied regionally in severity, the cerebellum being the worst. Authorities on the pathophysiology of autism immediately recognized the importance of this study. It clarified hitherto inexplicable findings; e.g., selective degeneration of neurons in the autistic cerebellum. It also suggested that anti-inflammatory drugs might be relatively safe and effective treatment for core and associated symptoms of ASD. Neuroinflammation in the autistic brain has been repeatedly confirmed and today no authority doubts it is part of the pathophysiology of autism. The neuroinflammatory process is well understood. What remains uncertain is how neuroinflammation starts and how it usually stabilizes at a level that interferes with brain functions without being life-threatening. Microglia are key players in this process. They are the free-standing, resident immune cells in the central nervous system. In the healthy brain, microglia are quiescent but vigilant. They recognize bacterial or viral components and those from damaged or dead neurons using molecular- pattern recognition receptors. When so stimulated, microglia quickly progress into the first (M1) of two activated states. They rapidly multiply and morph into amoeba-like cells that follow a chemical gradient to the source of stimulation. As they approach the target, microglia release proteins – proinflammatory cytokines – that promote local inflammation. In closer proximity they release various cytotoxic substances that disrupt cell membranes. Microglia then engulf and digest the remains. To limit the destructive immune response, microglia shift into the second (M2) activated state, whereupon they release anti-inflammatory cytokines and other agents that promote healing. 14 | TriLine | Spring 2019
The balance between pro-and antiinflammatory processes is intricate. In ASD it seems, the balance is partially shifted to the pro-inflammatory side. This is not only evident in postmortem studies; it has been shown in living individuals. Twenty, healthy and generally high-functioning men with ASD were compared with 20 age- and IQ-matched normally developing men by positron emission tomography (PET) using a radiotracer selective for activated microglia.2 Imagery of radiotracer binding to microglia was significantly greater for the men with ASD than the controls in every brain region studied, with the largest difference in the cerebellum. Pioglitazone is a contender to be the first anti-inflammatory drug to be approved for treating ASD. The drug was originally developed and later approved by FDA as an antidiabetic drug because of its sensitizing effect on insulin receptors of adipose cells. But this is now known to be an indirect consequence of the more basic effect the drug has upon gene production of regulatory proteins in many quite different cell types, including microglia. Pioglitazone binds to and activates the peroxisome proliferator-activated receptor-gamma (PPAR ). After pioglitazone binds to PPAR , the entire complex migrates to the cell nucleus where it causes certain genes to increase transcription of particular proteins and inhibits other genes from transcribing proteins. The entire process is too complex to describe here but the net effect on an inflammatory reaction is easily stated. Activated microglia are transformed from M1 to M2 states as their effects shift from pro- to anti-inflammatory. The first team to study the effects of pioglitazone in pediatric patients with ASD was led by an immunologist who, it seems, conducted the study in his own private practice.3 A series of 25 children and adolescents, aged 3 to 17, were openly treated with pioglitazone for 4 months. Treatment was effective for reducing aberrant behaviors in 76% of the participants. Improvement was inversely related to the participants’ age; i.e., the younger the child the more he/she improved. Other than slightly and transiently elevated liver enzymes and white blood cell counts in a few children, no side effects
were observed. The second trial compared adjunctive pioglitazone versus placebo treatments, double-blind, combined with standard risperidone therapy.4 Separate groups of 20 children with ASD (aged 4-12) received each treatment for 10 weeks. Relative to placebo, pioglitazone significantly enhanced the beneficial effects of risperidone on hyperactivity, irritability and social withdrawal. Side effects did not differ significantly between groups and none was serious. The third pioglitazone study generally followed a standard format for establishing safety, obtaining preliminary evidence of efficacy and establishing the maximum tolerated dose within the range tested.5 The investigators measured changes in pro-inflammatory and antiinflammatory cytokines in plasma, which if occurring in the brain, might explain behavioral effects of pioglitazone. Twentyseven children with autism (aged 5-12) completed the 4-month open trial. A broad battery of behavioral tests was employed to measure significant improvements in the following: 1) global behavioral disturbance, 2) social withdrawal, 3) irritability, 4) anxiety, 5) hyperactivity, 6) repetitive behavior and 7) obsessive-compulsive behavior. The plasma concentration of a pro-inflammatory cytokine dropped while that of an antiinflammatory cytokine rose significantly during the trial. No serious side effects occurred, though again, a few children showed a slight drop in white blood cell count that resolved spontaneously during or after the trial. Anti-inflammatory drugs are targeted on the pathophysiology of ASD not on behavioral symptoms that occur as consequence. Many of those symptoms are assumed to be caused or at least exacerbated by neuroinflammation. Thus, when a drug successfully reduces neuroinflammation, one would expect a global reduction in ASD symptoms. Pioglitazone appears to have done this in early trials. Vargas DL, Nascimbene C, Krishnan C, et al. Ann Neurol 2005;57: 67-81 2 Suzuki K, Sugihara G, Ouchi Y, et al. JAMA Psychiatry 2013; 70: 49-58 3 Boris M, Kaiser CC, Goldblatt A, et al. J Neuroinflammation 2007; 4:3 4 Ghaleiha A, Rasa SM, Nikoo M, et al. Psychiatry Res 2015; 229: 181-187 5 Capano L, Dupuis A, Brian J, et al. Mol Autism 2018; 9:59 1
Fernando’s Initiative by Heather Wennergren
PathPoint, noticed a big change in his friend. "It's like night and day. He’s motivated, he's happier. He's energized, he's like a new person. Fernando has turned a new leaf." Service Coordinator Maria Vanoni has also seen a shift. "He used to be very quiet... I didn't see him smile. Now, he walks with his head up, he's proud and he smiles."
Fernando with Service Coordinator Maria Vanoni & Job Coach Charlie Perkins
Service Coordinator Maria Vanoni usually has the role of initiating annual meetings. She was pleasantly surprised when a person she supports, Fernando Ortiz, reached out to her, "We need to meet."
to move from an unhappy roommate situation into a new space with his own room. When asked about his new living situation, Fernando replies, "I love it, I have to pay rent."
Fernando had found another job and wanted to transition out of his old job. This was not a small transition. Fernando was going from working six hours a week with a job coach to a full time job with competitive pay. Fernando was also clear that additional employment support was no longer needed. He's thrilled in his new position as a dishwasher at Casa Dorinda, a retirement community in Montecito. He is responsible for washing and then returning various cookware to it's stored location. He's already proven himself there, as he's received a raise and been offered special tasks. This positive change in Fernando's life caused a chain reaction. With the extra income, initiative and support, he was able
The old Fernando had some challenging behaviors stemming from his general unhappiness. It didn't take long for the behavioral services staff to confirm, "We don't need to see him anymore."
Fernando in his bedroom
Fernando is deeply loyal to Casa Dorinda for this new start. He confesses, I'm going to retire from there when I'm 67." At 45 years of age, that’s a solid commitment to fulfill any employer’s dream.
Fernando washes dishes at work
But that's not all Fernando pays for. He's upgraded his iPhone, Playstation 4 and iPad. Charlie Perkins, Fernando's job coach at
When asked what advice he would give other job seekers, Fernando is very direct. "Go to casadorina.org, go to 'Careers' and ask for Jerome. Go for it! Get an application and let others help you." Now Fernando takes his mother out for dinner.
Visit Disneyland at a Discount This Fall The Disneyland Community Involvement Program is an opportunity to purchase discounted admission tickets for people with developmental disabilities served by Tri-Counties Regional Center. Open enrollment runs from the end of August through the beginning of October. For more detail information on how to take advantage of this great offer, please contact Yanet Garcia at ygarcia@tri-counties.org.
By Yanet Garcia, Receptionist
New Directions Travel provides full and partial scholarships for trips to Disneyland throughout the year. Information is available on their website at www.NewDirectionsTravel.org or by calling the office at 805-967-2841.
Spring 2019 | 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 Mani Gaur, President, TCADD Board of Directors through the transition. TCRC also conducts and participates in transition fairs to provide information so that best choices can be made. Additional resources are available at tricounties.org. Spring is here and summer is rapidly approaching. This is a critical time of the year for individuals we serve, their families and the regional center staff. The proposed State Budget of $7.8 billion for regional center services acknowledges the need for increased funding for Purchase of Services budget and Operations budget (OPS) for the regional centers. I’m pleased to see that specialized caseloads with ratios of 1:25 are being recommended in the proposed State Budget. For individuals with complex needs, these service coordinator teams will be able to respond effectively and plan with families and individuals served.
The Government of California, private corporations and residents are leading the efforts in diversity and inclusion. Lanterman Act has helped integrate individuals with developmental disabilities into their communities. Many of these Individuals have proven their capabilities in a wide range of professions. Push for intellectual diversity along with support from the Paid Internship Program will help realize full employment potential of many individuals we serve.
hear their stories. Educating our elected officials about the everyday issues for people with developmental disabilities assists everyone to make the best programmatic and funding decisions. No matter where you interact with the developmental services system, please work alongside us to continually advocate for the needs of people with developmental disabilities. Please use the TCRC website to stay updated and participate whenever possible to encourage funding for issues important to you.
There are several wonderful organizations that provide employment to individuals with developmental disabilities. As you are out shopping or eating please consider supporting the businesses that employ the people we serve and provide With the launch of Self-Determination, those accepted in this encouragement to these orgafirst phase can begin to develop nizations and their employees. their plans. I look forward to hearing success stories as indi- During summer there are several non-profits and TCRC viduals develop their services service providers that offer For several individuals under 22 with this unique form of funding and support. wonderful experiences for years this time of year brings individuals with developmental tremendous anxiety as they disabilities. Two of my favorites I’m a strong believer of ensurtransition into or out of the school system. Your regional ing that our legislators and the are Night to Remember and center service coordinator uses community understand not Best Day Foundation. So get out and enjoy. Have a great Person Centered Thinking (PCT) just the numbers of people summer. methodology to help you guide needing services but also
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 Mani Gaur President
Ryan Wilkinson Vice President
Michael Kaszycki Secretary
Tim Farrar, PAC Representative Sharon Francis, VAC Representative Shirley Dove Diane Figueroa Craig Johnson Ada Gonzales Ramon Hooper Howard Kraus Ralph Morales Robin Rosso Nicole Turofsky Mark Wolfe
2019 Upcoming Board Meetings May 4.......................10:00 AM (SM) June 8......................10:00 AM (OX) July 13......................10:00 AM (SV) Sept 6...........................6:00 PM (SB) 2019 Upcoming Town Hall Meetings May 15..................... 1:00 PM (SV) July 10...................... 1:00 PM (SM) Sept 18................... 1:00 PM (OX) Oct 16...................... 1:00 PM (AT)