A Publication of Tri-Counties Regional Center | Fall 2019
Cover Story 01 Jamie Burba: Author, Filmmaker, Cancer Survivor and Advocate Featured Articles 03 Regular Dental Clinics Bring Big Smiles 06 SSI Recipients May Qualify for CalFresh 06 Getting Off the Streets: The Right Support Makes all the Difference 14 Medication To Improve the Use Of Language in Autism Spectrum Disorder (ASD) 15 Meet Hannon, Professional Beekeeper 15 Visit Disneyland at a Discount This Fall
Jamie Burba: Author, Filmmaker, Cancer Survivor and Advocate Self-expression through adaptive technology by Nancy Black
Recurring Topics 02 From the Executive Director 08 Calendar of Events 16 Greetings from the President Jamie works on her creative projects with assistive tech
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.
In collaboration with PathPoint’s Community Integration Manager Gil Addison, Jamie’s sister Kathy Burba, their family and the team at PathPoint, Jamie (when she’s not volunteering at Cottage Hospital, making films or writing her autobiography) is helping to invent and innovate adaptive technologies to expand access and quality of life for people with reduced mobility. Anne-Elise Sudduth is Jamie’s Service Coordinator. “Jamie is an inspiration to all she meets. Within the past few years, Jamie has been introduced to adaptive technology that has opened a whole new world to her. With the help of Community Integration Manager from PathPoint, Gil Addison, she’s become a film editor, made training videos for her support staff, as well as a documentary of her journey as a cancer survivor. She’s now working on writing an autobiography.” continued on page 4
Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D. With the winter holidays approaching I've been reflecting on systems, particularly the challenges to systems and their resilience. The Great Recession of 2008 brought some extreme challenges to the developmental services system. We pulled together, advocated and made it through. In the last few years we’ve been able to restore most of the approximately $ 1 billion in cuts we sustained during the Great Recession. The push and pull between funding and needs continues today as we plan to implement the latest system changes through new Trailer Bill Language requiring the implementation of new mandates for regional centers. Resilience is critical. You'll see this on a personal level through the story of Michael Cox on page 6. With the proper supports, Michael got himself off the streets and off drugs. These stories of persistence and resilience are woven throughout our community, a constant source of inspiration. On June 13, 2019, the Budget Trailer Bill (SB 81) for the FY 2019-2020 California State Budget (AB 74) was sent to Governor Gavin Newsom by the Legislature. TCRC has formed an internal task force to implement the requirements of SB 81. The TBL covers a broad range of topics such as rights of and information for persons served, public information around performance contract requirements, certain rate increases for some service providers, and specialized residential services. For a complete copy of SB 81, go to bit.ly/SBill81. SB 412, authored by Senator Jeff Stone and sponsored by the Association of Regional Center Agencies (ARCA) was stopped or “held” in the Assembly Appropriations Committee on August 30, 2019. This Bill was intended to repeal two taxes on disability, the Family Cost Participation Program or FCPP and the Annual Family Program Fee. The FCPP requires regional 2 | TriLine | Fall 2019
centers to pay less for respite, daycare, and camp services than a child needs based on family income and families are expected to pay the difference. The Annual Family Program Fee charges parents of children receiving other services. The regional centers and ARCA will continue to fight to end these programs. Senator Jeff Stone is to be commended for his work to repeal these two disability taxes.
receive less than 8.2% and seventeen service codes that were included in the rate study will receive no supplemental rate increase. Service codes that were not part of the rate study will not receive any supplemental rate increases. TCRC was allocated 110 spaces for persons served who wish to participate in the Self Determination Program during the first three years. Of the group of 110 selected, 62 individuals remained interested in the Self Determination Program and 47 decided to continue receiving their services traditionally. DDS selected additional participants in September to replace those who declined to be part of the Self Determination Program. Participants who are selected by DDS to enroll in the Self-Determination Program (SDP) are required to attend an orientation to help them learn more about Self-Determination, the Individualized Budget, Fiscal Management Services (FMS), the role of the Independent Facilitator and person centered planning. For access to all of the orientation materials on-line, in multiple languages, go to the DDS website at: www.dds.ca.gov/SDP/ SDPMaterials.cfm.
The Department of Developmental Services (DDS) delivered the final service provider rate study report to the Legislature on March 15, 2019; public comment was accepted until April 5, 2019. An overview of the rate study well as information on Burns & Associates Inc., is available on the DDS website (www.dds.ca.gov/ RateStudy/). Supplemental service provider rate adjustments allowed for by the enacted California State Budget will go into effect on January 1, 2020 and expire on December 31, 2021. The supplemental service provider rate increases are somewhat aligned with the rate study. Increases of 8.2% for certain service codes will occur. Four service codes will
TCRC has the online informational presentation available for anyone who would like to learn more about the program and submit his or her request to DDS. This presentation can be accessed at: https://www.tri-counties.org/self-determination-program/ Email questions to self-determination@tri-counties.org. Find Board reports and updates on financial issues important to the developmental services system in the Budget Watch section of the TCRC website at www.tri-counties.org/budget-watch. It's the will of the people that brings resilience. And that's why I honor the work of our stakeholders who persist in advocacy efforts in their own spheres. You make a difference every day. Thank you. That is what I'm grateful for this Holiday season.
Regular Dental Clinics Bring Big Smiles
"...get it done so you can keep your teeth for life. I have my smile back and I couldn’t be happier.”
by Steve Crusinberry
with people who have varied needs and a 95% success rate in treating people with no sedation. TCRC can fund up to three dental cleanings and fluoride treatments per year for those who need this service. Individuals also need to be seen yearly by a dentist in addition to these preventive clinics. It's important to note that TCRC services do not impact MediCal dental benefits. If you or someone you know could benefit from the TCRC dental clinics, please contact your service coordinator for more information.
Jesse Nave with Dental Coordinator Kayla Sejera
October is National Dental Hygiene Month. TCRC is committed to improving smiles with the help of Dental Coordinator Kayla Sejera. Kayla has been doing a tremendous amount of outreach within the TCRC community to find people who need greater access to dental care. “People with developmental disabilities are at a much higher risk for decay and gum disease than the general population, so prevention for our community is vitally important. Prevention is so much easier than trying to repair teeth, that’s why the clinics are so needed and well received.” One person who has participated in a TCRC dental clinic is Jesse Nave. Jesse first heard about the clinic through a program at United Cerebral Palsy. He was very concerned about his dental health and losing his teeth. According to Kayla, Jesse was on the brink of losing all of his teeth if he didn’t get help. Visits to the dentist can rattle the nerves of even the most courageous, but Jesse wants to assure everyone that there is nothing to fear. “The quality of the care is great, said Jesse. They
are all great people and fun to be around. Everyone is terrific, the hygienists, the receptionists, everyone is so nice.”
Good dental hygiene is important for general health. It is also important for emotional health. Smiling with confidence can boost self esteem. Many people, including Jesse, have already taken advantage of this program. Jesse offers advice for people who may be procrastinating, “Just do it, get it done so you can keep your teeth for life. I have my smile back and I couldn’t be happier.”
The dental clinics take place every four months with a focus on prevention. They have considerable experience working
Steven Jimenez shares a smile
Dental Hygenist Denise Cozza poses with Sara Schram prior to a cleaning
Fall 2019 | TriLine | 3
Jamie Burba: Author, Filmmaker, Cancer Survivor and Advocate ...continued from cover by Nancy Black
scary medical procedures.
Jamie shares her book
“I’m working on a book with Gil,” Jamie recounted, sharing her work with the Community Access Project program. This autobiography as well as film projects have been created with adaptive equipment on her iPad and the computer. “She's been a leader in the community, with the help of Gil. It started with a great partnership,” related Kathy. “She and Gil are like family now.” Jamie learned of her cancer in 2014 shortly after starting her writing project. “The doctor helped me,” she recounted “it was Dr. Kimberly Grafton.” After a mastectomy, she had chemotherapy. “Mama, Dad and Kathy came. Mama was worried. We were in the surgery room. I had bubblegum medicine to put me to sleep.” To celebrate the end of her weekly chemotherapy treatments, Kathy and Jamie did the Barbara Ireland Cancer Walk. “Jamie was the second highest fundraiser of that walk,” her sister shared proudly. “You might even see the commercial,” Gil added. “They always put it on KEYT.” The sisters also take part in another cancer walk each October. This one is not designed for people in wheelchairs but that doesn't stop Jamie from cheering. Kathy continued, “Jamie is a cheerleader! She has pom poms.” Now Jamie’s working on a project to help others around cancer. Using an iPad she controls with her cheek, she made a movie to support others dealing with 4 | TriLine | Fall 2019
Gil showed the adaptive stand that Jamie uses to support the iPad. “This technology has been around for a while, but we adapted it. Assistive technology has opened Jamie’s life. She's made nothing but progress from the first day I showed her what it can do. She keeps developing and learning new concepts. She's mastering new tools - - the computer and iPad with accessibility features. Jamie's just amazing! She does her own research. And I think this is one of the key elements to Jamie’s discovery." Gil explained the ‘journey of discovery’, "Once she started understanding how to operate assistive technology, it opened her world, and through the process of the cancer, she started studying and learning what to expect at the doctor appointments, dispelling fears around appointments." The process has been an empowering journey for Jamie. She also uses the iPad to talk to her family. “She Facetimes me at least once a day,” Kathy laughed, “sometimes more." Jamie calls both parents each week. With access to the Internet, she can learn about what is important to her. That’s how she found out about the cancer walk.” “She has a Facebook account,” Kathy gushed, “she does Facetime all the time. Now she’s texting but the spelling is a problem. It's a new challenge that leads to another developmental goal. This new self-actualization resulted from the cancer. Something that could have been awful became a powerful catalyst. It started with the partnership with Gil and the adaptive equipment. It moved to little tools like this stand to hold her water, then the computer, and now this whole program. Jamie was one of the first to get these tools, she’s our pioneer. She’s taught other people how to use it, too.” “Everything that Jamie and I have learned together,” Gil went on, “has really allowed me to take these ideas and concepts, and to spread them out throughout our whole organization. I show them, ‘This is what
Jamie greets guests at Cottage Hospital
Jamie can do’; for example, I was in San Luis Obispo talking with someone about adaptive technology, when Jamie called me. ‘It’s Jamie! Let’s talk with her!’ Jamie’s actually talking with someone I’m working with, they’re talking and collaborating and sharing ideas and it’s amazing.” “This wasn’t a funded program,” Kathy pointed out. “This was just ingenuity and heart.” Gil used existing supplies to start the program, which is now funded, partially through a state grant from Home and Community Based Services. “When I first got this job in 1998,” Gil recounted, “it was just about ‘how can I help people become independent and happy?’ And there were two people there at the time; one was struggling and one was happy. So I decided to try and make a difference. At that time, Jamie was using lower technologies. I wondered, ‘What else is out there?’ So we found the Erica System with first-generation eye gaze in 2004, where you just look at the screen to move the mouse and control the computer. Then we started finding switches and software. It just kept growing.” “We were watching a show called This American Life on Michael Philips, an individual in a wheelchair who was using amazing technology. We stopped the video and discovered proximity sensors and this new device called Swifty by Origin Instruments with SwitchXS by Assistiveware. The new software, Proloquo2go produced by Assistiveware, was a popular communications software for
"What’s next is smart homes where Jamie can control the thermostat, open and close the curtains, and use the iPad to see who’s at the door...There’s so much potential.” iPad. I set Jamie up with a switch, and said, ‘it scans and it moves your mouse. I just let her explore it. A half hour later she had it down.” “She’s a fast learner,” Kathy shared proudly. “She can do things on the computer that I can’t. She can troubleshoot. She can drill down into stuff. She gets it and she practices." Gil challenges her by speeding up the mouse. “Just stretching the muscles,” he explained. “She knows I’m right there. It’s been an exploratory process.” “She’s providing an example that others can follow,” Kathy continued. “Her house mate Greig saw her iPad, and he wanted one. Then Watson wanted it, and now three people at her house are actively using their adaptive gear on their own. The other day Greig called my parents by mistake instead of his, but it doesn’t matter… we’re all family.” It’s much easier, with Facetime, for example, to show Jamie what her family members are doing, rather than trying to describe “walking the dog” or “doing the dishes”. She can see what’s going on directly. “I like that,” Jamie affirmed. “It’s bringing her world a lot closer to her,” shared Gil, “all the mystery throughout her life. It’s like, ‘oh; that’s why’. I see a lot of the people that we support here, who have a similar mystery. I wish we’d had this technology twenty years ago!” Gil elaborates, “It’s constantly changing. I foresee in the future that Jamie could have an electric wheelchair that she could actually control herself, through facial gestures or minimal range of motion.” “I want one!” was Jamie’s response. “You’ll get one as soon as it’s available,” Kathy laughed. Jamie is also testing new software from Cognixion, formerly known as Smartstones, that includes an app called SpeakProse. This allows people who can't click buttons to communicate with
Jamie beta tests eye gaze software
gestures, tapping, and eye gaze. “I have the best team,” Jamie grinned. “I want to advocate for breast cancer survivors. I want to help.” Jamie’s team is with her. “What’s next is smart homes,” Gil predicted, “where Jamie can control the thermostat, open and close the curtains, use the iPad to see who’s at the door, unlock the door and let them in. There’s so much potential." Gil continues, "The next year is about figuring out how to build bridges between the home environment, day program, and the community." These new technologies are becoming more accessible. Learning and creativity, combined with progressing technologies is giving people new ways to communicate and to control their environment. "We’re pioneering the tools of the future now," Gil explains, "and will share the results of the pilot with the community. We’re changing the world.”
See Jamie’s movie: https://youtu.be/o2RLQy_8syU or search "Jamies Story A year in the Life My Cancer Journey" Donate to the PathPoint Adaptive Technology Program: https://www.pathpoint.org/donation/
Jamie poses with writer Nancy Black
Fall 2019 | TriLine | 5
SSI Recipients May Qualify for CalFresh by Heather Wennergren
CalFresh encourages students, seniors, immigrants, homeless, or former foster youth to apply. The good news is that this benefit may also be available for SSI recipients. If they qualify, there is no change to the SSI/ SPP monthly benefit. Some seniors or people with disabilities may be able to buy hot, prepared meals at some restaurants. The amount of CalFresh benefits a household receives is based on household size, income, and monthly expenses such as housing, utilities and medical costs. The average national amount for a senior or person with disability is $105 - $110 per month. Is it getting harder to put food on the table? CalFresh (also known as Food Stamps or SNAP) may be able to help. We all know the importance of eating nutritious food. CalFresh is a supplemental program that helps people buy food. Monthly benefits are provided on an Electronic Benefit Transfer (EBT) card that works just like a bank debit card to buy food at most grocery stores, markets and some farmer's markets.
Households with a gross income below 200% of the Federal Poverty Guidelines (FPG) and net income (after certain deductions) below 100% of FPG qualify. Citizens or legal residents are eligible to receive CalFresh. Undocumented individuals are not eligible, but can apply for their children if the children are legal residents or citizens. It only takes 10 minutes to apply at the CalFresh website. Applicants know in 30 days if they are approved. Applications can be expedited in emergency situations.
TCRC has partnered with our Family Resource Centers and local County CalFresh teams to conduct outreach and provide application assistance at TCRC offices. For more information, email Gaby Fukunaga at gabyf@tri-counties.org. If you require assistance or need reasonable accommodations, visit CaLFreshFood.org. Apply online at GetCalFresh.org or call toll-free 1-877-847-3663.
Getting Off the Streets: The Right Support Makes All the Difference by Heather Wennergren and Nancy Black
make a change. His probation officer, Kim Litle, offered a helping hand. “Kim makes sure I stay out of trouble,” he shared, “which I’ve been doing. We have a good relationship. They have a program called Probation Reporting Resource Center, I go up there every day to see them.” Sandy Stout and Sarah Miller work at the Probation Reporting Resource Center. “They listen to our problems,” he recounts “and motivate us to be better people. That’s been inspiring.” Michael poses after a meeting at TCRC
Michael Cox had a difficult past, in and out of jail frequently, with bouts of drug use and homelessness. With hard work and support he was able to turn his life around. He awoke one day and decided to 6 | TriLine | Fall 2019
When Michael hit rock bottom, he moved to Santa Barbara from Santa Maria. “I came to SB to stay clean from Meth, and ended up moving into a sober living home.” Getting into a different environment with different people helped him to break the
destructive cycle he’d been stuck in. “I knew a lot of people in Santa Maria, and they were involved with drugs.” Service Coordinator Mary Dilley, continued, “He had to make some hard choices. One of them was to not sleep in some halfway and transitional houses. It was better for him to avoid any environment where people were using drugs. He ended up living on the streets, chronically homeless until November 2018. Then he got into the Faulding. He has a housing voucher now. Once Michael got pointed in the right direction, he reached out and he took steps to move forward. He was never elusive, I could always find him. He was serious. He would drop into the Regional Center office whenever he had paperwork to turn in or had questions needing answers. He brought certificates from Anger Management,
from staying clean. We’d just add it to his file. Americorps helped him sign up for his Housing Voucher. It came through fast for him! And the housing voucher too. Getting into the Faulding was a challenge. There were hurdles that tested his patience (and mine). A judge ordered others to go before him… it put him back six months. He hung in there. He stayed clean. All this time he’s had drug tests with the probation office. They’ve actually faded out now. As a Service Coordinator, I had to get creative, especially when he was homeless. We found a hotel for a few nights during the floods and the weather… you can’t even imagine these things we take for granted. He has friends and places he can stay but it’s not a home. It’s been a journey. And we haven’t even talked about employment. He initiated that, too.” Michael went on, “I had a friend who was living on the streets and she worked with Showers of Blessings, an organization that was started in 2004 to help homeless people. It’s a mobile trailer to give the homeless a place to shower for interviews… a lot of our guests from the showers actually got jobs. So I started helping them out for a stipend, and they liked my work. When things changed, they wanted someone to work… I was the first one to get in line to be an intern.” Starting as a volunteer, Michael is earning a paycheck for his work at Showers of Blessings via the Paid Internship Program. The goal for the PIP program is to strengthen his work history, or get hired on permanently. Michael agreed to have assistance with his budgeting through Trust Mgmnt Services (TMS). He’s clear that he wants to be of service to others facing the difficulty of life on the streets. “Because for other people, they’re in the same boat as me. And I make success, because I got into a place, and they are still looking, or still waiting, and with this, my article, it will give them a light to follow, so they can have hope about housing.” “It was rough (to be homeless). I had people asking to use with them and drink with
them, and I told them, ‘I’m a recovering alcoholic,’ for over 20 years, I haven’t drunk. And for drugs, I didn’t want to be a part of it. I didn’t want to be in and out of jail because of drugs. I never went to jail on drug charges. When you gain housing, or get into a place, they test you, and look at you, and see who is running in and out of your apartment for drug activity and I wanted others to know that they can do it too.” “The showers were my inspiration. The Showers are blessings because, it’s like, when you go there to work, it’s peace. It’s calm, it’s serenity. When we have problems with people, we say, ‘Don’t do this, don’t bring your problems here.’ It’s a place of peace and harmony.” My place is what keeps me going because at the Faulding you can start having guests at about 8 o'clock to 10. And it’s secure, the building is secure. I can go into my room, lock my door, and I know it’s my safety zone.” “Kim Ralph, the executive director of Showers of Blessings Santa Barbara (https://showersofblessingiv.org/), took over when Doug Miller had cancer, Doug Miller wanted Kim to be in charge, and he took it full scale, and he’s still right there with us, he shows up to most of our sites to see how things are going and he listens. He wants to help people out here, and if you have a problem you can come to Kim. I had my stuff stolen when I was on the street and I came to the Humanitarian Society and they helped me out, and they called Kim for me and he came over, I spent the night at his house, he bought me a new cell phone for Christmas. He does it out of the goodness of his heart. And if anything happens he’s right there with us.” His Service Coordinator Mary smiles, “I think that Showers of Blessings not only keeps people clean inside and out, it has become another source of wholeness for Michael too.” “Y'know, we have a young couple who comes to the showers and they’re only in their twenties. One of them is working
at the Zoo during the summer for the Kids Camp at the Zoo. And she’s all happy and ‘it’s only seasonal, but I can find another job afterwards,’ trying to get into a place as long as they have income, she one day showed Service Coordinator Mary Dilley up, about 6:15 for a shower and we let her in, we didn’t turn her away.” Michael has a driver’s license, and he’d love a car someday. He hopes to save for one with the CalAble program. He’s also attending Santa Barbara City College. “There's a program for people who were incarcerated, like myself, called Transitions. And they help with schooling, with paying tuition fees and things, and a lot of people who are incarcerated go into the Transitions program from the EOPS program and we work, and they work tirelessly to help us. People are very grateful in this program. I’m studying to be a computer tech.” “When Michael first came, he was enrolled in County Mental Health to stabilize his medications seeing Dr. Lee. One day I got a call, 'Michael met protocol, is out of crisis; can you transfer him to Regional Center for ongoing care?' and I said, ‘You betcha.’ He couldn't have graduated from that program unless he had participated first, so it all goes back to his initiative and drive. When Michael first came to Santa Barbara and Kim Litle became his probation officer, she became a part of the network and attended several meetings. It wasn't just me and Michael anymore, there were three of us. Kim's really been a part of the whole accountability piece. Especially in the beginning, because now that Michael has a place to live, he gets Independent Living Services. He’s getting more benefits and better care.” Michael decided to turn his life around. Hard work, but worth it. Fall 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 805683-2145 x127 or abuesker@alphasb.org. 8 | TriLine | Fall 2019
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 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
Call Alpha for Monthly Events or Visit bit.ly/AlphaCalendar
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.
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.
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) 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 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 11TH ANNUAL DSASBC BUDDY WALK AND FESTIVAL Saturday, June 13, 2020, Chase Palm Park Great Meadow, Santa Barbara Volunteer,
Fundraise, Sponsor. Contact Melissa at (805) 886-4411 or Melissa@dsasbc.org 11TH ANNUAL HOE DOWN DINNER DANCE PARTY - OCTOBER 2019 Santa Barbara Carriage Museum - Celebrate “Extraordinary Educator” 2020 recipient and Down Syndrome Awareness Month. Contact melissa@dsasbc.org for details DSASBC VALENTINE’S DAY DINNER DANCE PARTY Goleta Valley Community Center February 2020. 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 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 volunteers for fun activities at parks in Santa Barbara. Check website for dates and details. Some Scholarships available: www. PeerBuddies.com
Santa Barbara County 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.
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.
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 BASKETBALL SKILLS CLINICS FOR BOYS + GIRLS WITH SPECIAL NEEDS Beginner and Intermediate Skill Instruction, Basketball buddies for players who need assistance Indoor and Outdoor courts. Every child welcomed - pay as you are able. No one is turned away. Register at PYC when you start; Make your check payable to SB SNAP (a non-profit affiliate of the SB Foundation). Spring clinic: Tuesdays, April 2 - May 7; 3:45 – 5pm, Six weeks for $36. (Fall clinic: Sept – October.) Page Youth Center: 4540 Hollister Avenue, Santa Barbara. 805-452-9039 CHALLENGER T-BALL + BASEBALL FOR BOYS + GIRLS WITH DISABILITIES Co-Ed T-ball and coach-pitch and skill development teams for ages 4 and up, teens, and adults with physical, developmental, or intellectual challenges, wheelchair players included. Offering competitive and non-competitive teams adapted for all levels of play. Saturdays, March - May. Game schedules vary at three locations: Girsh Park in Goleta, El Caro Park in Carpinteria, and Montalvo fields in Ventura. Contact Eric Hancy for registration: 805-455-0500.
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. Fall 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 please call 805 -485-9643; 800-3323679; 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 Spanish. Parents meet to share the experiences they’ve had with their children with 10 | TriLine | Fall 2019
Autism as well as share and learn about resources. *Adults only. 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 & Parks Department. Our representative provides support, information, education & training, and remote access to our lending resource library. CONNECTING WITH RAINBOW IN SANTA PAULA (SPANISH) Every Tuesday 10:00 AM – 1:00 PM a resource parent is available to provide support and information to parents at El Buen Pastor Methodist Church in Santa Paula.
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 in Fillmore, location varies. Parents of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources. “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30 AM – 10:00 AM at El Buen Pastor Methodist Church in Santa Paula 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
Ventura County
FUN CLUB THROUGH THE CITY OF OXNARD SPECIAL POPULATIONS PROGRAM This program is designed to provide social and recreational opportunities for persons of all ages with disabilities. Activities offered include: Challenger Sports, Fun Club, Day at the Park, Arts & Jewelry Classes, Swim Lessons, Community Gardening and Braille Institute. For information call Maria Sandoval 805-385-8019/ or Direct 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 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 805-497-9596. AAC PARENT SUPPORT GROUP This is a great opportunity to meet other families with children using communica(Continued) Fall 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.
tion systems (e.g., picture systems, speech generating devices). Please contact Traci Peplinski with any questions, to RSVP and for directions. Space is limited. 805-8443003 traci.peplinski@gmail.com EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month – Meeting location Varies. Support group for active and retired military families with children with special needs. 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 | Fall 2019
PHP SPONSORED EVENTS **For ALL PHP events please RSVP to php@ucp-slo.org or call 543-3277. REAL WORK FOR REAL PAY What will employment look like for your adult child? Learn from David Grady of State Council on Developmental Disabilities about competitive, integrated employment: customized employment, paid internships, invoice based business models and more. Thursday, December 5 from 6-7:30 pm in Pismo Beach. FIRST THURSDAYS AT JOY PLAYGROUND Join us every first Thursday of the month at Joy Playground in Atascadero- a perfect meet up place for children and caregivers in the Early Start program! 9-10 am PRIMER JUEVES EN EL PARQUE Para mamás y papás de niños en Comienzo Temprano, o con necesidades especiales, vengan al parque para jugar, compartir ideas y hablar de lo bueno y lo difícil de ser padres de familia! Joy Playground, Atascadero. 9-10 am. *Evento en Español* GET CONNECTED for parents of children 0-10 A time to chat and connect for parents of children ages 0-12 in Early Start or with special needs.
Second Wednesday of every month from 11am-12pm. SLO and Atascadero You may come with or without your children. CONECTASE Una oportunidad para platicar con otras familias que tienen hijos con necesidades especiales. Este evento es bilingüe. Miércoles, 11am – 12 pm *Evento en Español* MAKER WORKSHOP Parents can create materials such as: picture activity schedules, icon exchange materials, visual schedules, social stories, visual prompts, etc. There will be computers, printing supplies, laminating supplies, etc. on hand. Training and support will be provided by Rebecca O’Gorman-Trimbath, BCBA. Third Monday monthly by appointment PHP 940 Ramona Ave, Suite M, Grover Beach. PARENTS OF TEENS AND ADULTS WITH DISABILITIES SUPPORT GROUP *Now 2 Locations!* Come and talk about the transition out of school, SSI, independence, social opportunities and more. We include parents of individuals between the ages of 13 and 40 for this support group. Atascadero-Third Tuesday from 10:3011:30 am
SLO – Now on Third Friday, from 10:30-11:30 am *Evento en Español* IEP & SERVICES: BEYOND THE BASICS Topics will include Transitions, Disability vs Eligibility, Appropriately Ambitious Goals, Coping Skills. Presented by SELPA. Wednesday, November 30 from 5:30-7:30 pm. RSVP to (805) 782-7302 CAL FRESH APPLICATION APPOINTMENTS Formerly known as Food Stamps, PHP will be hosting one-on-one appointments with the TCRC Benefits Coordinator to submit application for Cal Fresh. November 14 in SLO. November 22 and December 11 in Atascadero. December 12 in Grover Beach. Call for appointment times. *Evento en Español* TRANSICIÓN A presentation on transition to adulthood for Spanish speaking families. Atascadero, 2020 *Evento en Español* UCP SPONSORED EVENTS FRAMING YOUR IEP CONCERNS A toolbox training geared towards helping families frame, support and articulate their specific IEP concerns and skills for building positive, goal focused relationships with your district. Presented by Family Awareness Consulting Educational Services (FACES). December 16, 6-7:00 at the Hilton Garden Inn Pismo Beach 601 James Way, Pismo Beach. RSVP to elizabeth@ucp-slo.org or (805)543-2039 SLO EXCURSIONS is a program that takes place in “real-life” settings, allowing teens to receive handson behavioral support while enjoying fun and new everyday activities with friends! 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.
JOIN THE VOLUNTEER INTERACTION PROGRAM (VIP) GROUP United Cerebral Palsy (UCP) is offering a free volunteer training program (VIP Group) designed for teens and young adults on the Autism Spectrum who are interested in volunteering for local service, non-profit organizations. Pizza or sandwiches will be provided, or you can bring your own food, to eat at break. To sign up for the VIP Group, call UCP at (805) 543-2039 ARTS FOR LIVING has a lot of music opportunities going on – check out http://www.artsforliving.org/ and click on programs – they have two music clubs in SLO and one in Atascadero. GLEE CLUB is an inclusive community choir joyfully singing a variety of styles of music and improvisation in a supportive environment! – They meet every Wednesday, from 5:306:30 pm at the UCP SLO Office, 3620 Sacramento, Suite 201. Call Laura to Reserve YOUR Space for either group: 805-225-6101 or email artsforliving@ ucp-slo.org LOCAL & ONGOING EVENTS 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
NORTH COUNTY ADAPTIVE SPORTS AND RECREATION PROGRAM Special needs athletes from North County & Morro Bay: Basketball, Volleyball, Bocce Ball, Kickball, Line Dancing, Barbeques, Dance Parties & more Contact…Ron Vasconcellos @ 805.772.1806 or Peggy Edwards @ 805.238.0702 PARENT COACHING If you are a parent who is looking for insight into challenging child and teen behavior(s), contacting the parent coach will help you to generate solutions to every day parenting problems. If you want to: learn to set limits, handle disagreements, get your children to do chores and accept responsibilities, then don’t put off contacting the parent coach today! North County & Coast- 805-904-1411 SLO & South County- 805-709-2023 ** Español Spanish Speaking- 805-712-5038 NAMI: FAMILY-TO-FAMILY Do you have a family member or friend with a mental illness such as depression, bipolar disorder, schizophrenia, borderline personality disorder, or obsessive-compulsive disorder? Family-to-Family can help you! It is an educational program for family members and friends of individuals living with mental illness. It offers knowledge, training and emotional support and is free. The course, coordinated by NAMI and TMHA meets 2 ½ hours per week, for 12 weeks. Free For more information and to register, call Henry Herrera at (805) 440-3516 *bilingual •
San Luis Obispo: PHP Library, 3450 Broad St, Suite 111, SLO * bilingual Español/English staff are available (805) 543-3277, php@ucp-slo.org
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Atascadero: PHP Library, 7305 Morro Rd, Suite 104A, Atascadero (805) 461-7415, php@ucp-slo.org
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Grover Beach: PHP Library (Open by Appointment), 940 Ramona Ave, Suite M, Grover Beach (805) 543-3277 php@ ucp-slo.org
Saturdays. San Luis Obispo. Siblings/aides welcome. For more information call 5438235 or aburnett@sloymca.org 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
SAN LUIS OBISPO COUNTY
San Luis Obispo County
Fall 2019 | TriLine | 13
Medication To Improve The Use Of Language In Autism Spectrum Disorder (ASD) by James O’Hanlon, Ph.D., Psychopharmacologist Most individuals with ASD suffer some degree of expressive and/or receptive language impairment. For the higher functioning it may only be a relative inability to comprehend the nuances of verbal or nonverbal communication implying the attitude, emotional state or wishes of another person. For others on the spectrum, it may delay or even prevent the acquisition of spoken language. Those who do speak may do so in an abnormal way, sometimes limited to single words or short phrases, sometimes idiosyncratic and sometimes simply echoing what is said to them. Prosody, the normal intonation, tone, stress and rhythm of expressed language, may be replaced by monotonic speech. Receptive language may be similarly affected. The afflicted individual may be unable to comprehend the meaning of the same verbal cues in the speech of others. The question addressed here is whether pharmacotherapy by itself or adjunctive to speech therapy can reduce the language deficits of this disorder. Discovery of abnormalities in brain cholinergic systems in deceased adults with ASD, and subsequent trials with medication to compensate for these supposed abnormalities in children with ASD, suggests that targeted pharmacotherapy might be effective. Different cholinergic systems arise from major neuron clusters, located in the basal forebrain and the brain stem. Different clusters project axons to the cortex, hippocampus and thalamus where axons release the transmitter, acetylcholine (ACh). ACh acts on two types of receptors, each comprising multiple subtypes. Projections to the cortex mediate cognitive functions including working memory and learning. Those to the hippocampus mediate the exchange of information between working memory and long-term memory. The exchange is critical because information in working memory in constantly changing and would be lost if it were not consolidated in long term memory; i.e., learned. The same is true in reverse. Learned information in long-term memory would be useless if it could not be transferred to working memory; i.e. recalled. It is noteworthy that 14 | TriLine | Fall 2019
the cholinergic system projecting to the hippocampus is the first to degenerate in Alzheimer’s disease. This is held responsible for its earliest symptoms; i.e., the progressive deficits in both learning and recall. The deficits can be slowed but not reversed by drugs that inhibit acetylcholinesterase, the enzyme that inactivates ACh after release. Though the drugs cannot prevent steady attrition of cholinergic neurons, they at least increase the effectiveness of ACh released by the survivors. Discovery of cholinergic deficits in ASD occurred in the United Kingdom where Elaine Perry and associates undertook four postmortem studies of brains from a total of 24 adults with ASD, comparing them with the brains of age and IQ matched control subjects. Their work revealed that several ACh receptor subtypes were expressed at lower levels in ASD than control brains. One in particular was expressed in the cortex at levels of only 27% to 35% of the average control level. The relevance of these results was recognized by independent investigators in Germany, Iran and USA who sought drugs to improve cognitive functions in children with ASD. They turned to acetylcholinesterase inhibitors approved for the treatment of mild Alzheimer’s disease: donepezil (Aricept), galantamine (Razadyne) and rivastigmine (Exelon). Some but not all the investigators chose to measure drug effects on expressive and receptive language. Those who did were handicapped by the lack of validated tests for measuring drug-induced improvement in language. In all, 8 trials involving 197 children and adolescents with ASD were undertaken before 2019. Doses as well as drugs varied between trials. All were small with as few as 8 and no more than 43 participants. Only 3 were placebo-controlled. As might be expected, results were equivocal and sometimes contradictory. But in 3 of the 4 trials where expressive and receptive language skills were measured, drug effects were positive. The latest and most rigorously controlled trial was undertaken in Israel.1 It included 60 children with ASD, aged 5-16, who were
randomly assigned to receive treatment for 3 months, double-blind, with either placebo or the combination of donepezil and choline, an ACh precursor and widely available nutritional supplement. Various clinical, intellectual and behavioral tests were applied before and after the treatment period, including those for expressive and receptive language skills. In a departure from the way drug trials are usually conducted, this one did not end with the conclusion of the treatment period. Rather, the children were brought back after a 6-month ‘washout’ period for another round of testing. Children using up to two psychoactive drugs prior to the trial were allowed to continue using them but to remain in the trial, they were not allowed to change them in either the treatment or washout periods. Results pertaining to treatment effects on language skills were surprising to me but perhaps not to the investigators. There were no significant differences between drug/supplement and placebo treatments for either expressive or receptive language over the 3-month treatment period. None of the other measures changed significantly either, except one of dubious importance; i.e., an indication of disturbed ‘health and physical behavior’ not corroborated by parents’ reports. Stunningly, a highly significant treatment effect emerged 6 months after treatment had ended. Receptive language skills of the group treated with donepezil plus choline had continued to improve over the ‘washout’ period, whereas those of the placebo group remained the same. However, expressive language skills remained at previous levels in both groups. The implication is that pharmacological treatment started a self-perpetuating process in the brain that eventually improved the children’s ability to at least understand verbal language if not to use it themselves. One wonders whether their improved receptive language will eventually lead to better expressive language. Gabis LV, Ben-Hur R, Shefer S, et al (2019). Improvement of Language in Children with Autism with Combined Donepezil and Choline Treatment. J Mol Neurosci; 9(2): 224-34
1
Meet Hannon, Professional Beekeeper by Nancy Back
Hannon Ladenheim discovered an interest in beekeeping on the internet. “I found my fascination on Youtube,” he shared. “I first became interested in beekeeping when I watched a single video, and then one video led to another; and before you know it, I was interested in beekeeping. There’s no set way to learn beekeeping, there are lots of ways to do it. It almost like something clicked… it just fascinated me.” Hannon has been working at El Campeon Ranch (www.elcampeonfarms.com) in Hidden Hills over the last three months, with the TCRC Paid Internship Program, tending the bees there. He’s managing four hives. “They’re trying to bring in more hives. Two are feral and the other two are new Italian hives. I’m their main beekeeper currently.” That first day when the barn manager, Mark Audenino, wanted Hannon to check the hives, they’d tried to move one hive into a bigger hive, but Hannon could see that they did it the wrong way. “I was checking out the hives with the rancher, and I told him, ‘I see why this first hive didn’t work out, and also the second.’”
Hannon inspecting honeycomb
not inspectable. You need to inspect it, to judge what’s happening in the hive. That’s why we use frames, so that the bees can build comb onto something that we can maneuver and inspect.” Now Hannon works on the ranch, about 20 hours a week. He enjoys the chickens and goats. He also works with bee removal specialist, Ron O’Brien. Hannon helps him with his apiaries while learning from a master beekeeper. www.beespecialist.net “Hannon has been a pleasure to work with,” shares his Service Coordinator, Mindy Mosher. “He has awesome work ethic and integrity, on top of having a great personality. I am fully confident that he will continue to grow in his career and I look forward to continuing to support him.” Hannon’s long term vision is to become a “bee guru”, to nurture bees without pesticides, and to promote bee and pollinator health in his region.
Hannon knew what to do. “My mom, Mark and Raul, the onsite veterinarian, showed them how to convert one hive into a bigger box, and another to help with burcomb… that’s the honeycomb that the bees have made that’s attached to a wall so you can’t inspect it… I helped with fixing it up a bit. It’s comb that’s not in a frame or connected to a top bar. If you have burcomb, that’s comb that’s
Hannon in the classroom
Visit Disneyland at a Discount This Fall The Disneyland Community Involvement Program is an opportunity to purchase discounted tickets for people with developmental disabilities served by TriCounties Regional Center. For more details on open enrollment and how to take advantage of this great offer, please refer to our website bit.ly/TCRCDisneyland. For questions, contact Elyse Rodriguez at erodriguez@tri-counties.org.
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.
Fall 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
www.whatcanyoudocampaign. that can impact eligibility for lawful permanent residence. org provides information on This is creating fear and conwhat you can do. fusion resulting in individuals We all appreciate the arrival of not enrolling in services or the first phase of implemenopting out of benefits. It’s important to guide individuals tation of Self Determination. to seek legal advice whenever Individuals approved by DDS Ensuring that individuals with are supported to learn about possible. Check the TCRC developmental disabilities website for updated inforthe elements of the program in need of the supports and mation. Current lawsuits by through orientation materiservices from regional centers als. The orientation material advocacy groups and states have access to a quality com- is available for all on the DDS have deterred this change munity life is an important in public charge policy. The and TCRC websites. responsibility for all regional good news is that it is curcenter Boards. One key aspect Regional centers Boards are rently on hold. of community life, employbeing supported through the ment, has been funded in a As evident by the topics such efforts of the Department very practical way over the last of Developmental Services as employment, Self Deterfew years, in the form of the (DDS) to offer training events, mination and legislation, Paid Internship Program. This advocacy has powerfully influincreasing communication funding has been accessed by across the state for volunteers enced positive changes in our Tri-Counties Regional Center in these important governance systems. Continued advocacy for the benefit of people is needed for such as taxes on roles. I look forward to the receiving supports. We look disability and the change in planned training next Februforward to the regional cenPublic Charge Policy. ary; sharing views, discussing ter’s continued development common issues, and ensuring of relationships with commu- that Boards are equipped with Holiday season is rapidly nity employers and hearing approaching and I look the skills to properly serve in of stories of flourishing job forward to seeing individuals these roles. opportunities for people with served out in the community developmental disabilities. The proposed changes to enjoying the holiday cheer a Public Charge Policy are and bringing holiday cheer to October is recognized as others. On behalf of the TCRC disturbing. If an individual National Disability Employment accesses a benefit such Board of Directors and staff I Awareness month. I request want to extend best wishes to as Medi-Cal or IHHS for 12 you all to become champions months in a 36-month period, all. Happy Holidays! for disability employment. he or she can be considered www.dol.gov/ndeam and to become a public charge
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
Mark Wolfe
Vice President
Michael Kaszycki Secretary
Sharon Francis, VAC Representative Shirley Dove Craig Johnson Ada Gonzales Ramon Hooper Howard Kraus Ralph Morales Robin Rosso Nicole Turofsky Elizabeth Webster, PAC Representative
2020 Upcoming Board Meetings Feb 7.......................6:00 PM (SB) March 7.......................9:00 AM (SB) May 2......................10:00 AM (SM) June 6......................10:00 AM (OX) July 11...........................10:00 AM (SV) Sept 11...........................5:00 PM (SB) Oct 3...........................10:00 AM (AT) 2020 Upcoming Town Hall Meetings Feb 19.....................1:00 PM (SLO) March 25..................1:00 PM (SB) May 13.......................1:00 PM (SV) July 15...................... 1:00 PM (SM) Sept 16.....................1:00 PM (OX) Oct 21........................1:00 PM (AT)