A Publication of Tri-Counties Regional Center | Fall 2018
Cover Story 01 Scamming Tactics: Protect Yourself and Others Featured Articles 03 New Perspective on Employment, Think BIG and Re-imagine 06 Person Centered Planning Reviews - Bringing Hope and Understanding 07 Josh Phillips, the Heart of the San Luis Obispo Train Station 07 New Internship Program Lands M.E. with R & D 09 Honoring VAC Leadership 09 Congrats to Carly Fulgham! 14 Medicine That Can Induce Violence: The Case Of Antiepileptic Drugs (AEDs) 15 TCRC Announces New Dental Coordinator 15 Disneyland 15 Jonas Shares Joy 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.
Scamming Tactics: Protect Yourself and Others by Dan Van Keuren, Steve Crusinberry & the Ventura County FAST
Have you ever received a call saying that you won something? Or an email or letter promising that you are the winner? Red flag or beware! Likely, you are not a winner, but instead being tricked into giving away your personal information or your money. According to a recent study by the Federal Trade Commission, 400,000 people have filed complaints about being victimized through these scams in the past year in the US. And these are just the people who reported their loss to authorities. The actual number is significantly higher as people are embarrassed to identify themselves as victims or do not know who to inform. Two highly targeted groups include people with developmental disabilities and seniors. Victims can experience financial ruin and often feel helpless. SOPHISTICATED SCAMS BY SMART HACKERS Don't assume you are exempt. Some of these scams are sophisticated, well planned and orchestrated by smart people with call centers all over the world. People with intellectual disability and seniors are prized targets. Scamming tactics are working. "Financial abuse is a high risk for TCRC eligible persons,� comments Dan Van Keuren, Service Coordinator in Oxnard. Concerned about this trend, Dan continued on page 4
Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D. On June 27, 2018, the California State budget for FY 20182019 was enacted into law, providing important considerations for service provider rates. Part of the developmental services budget called for “bridge” funding to reimburse service providers for meeting local minimum wage requirements. This funding, a total of $40 million, $25 million from the General Fund and $15 million through matching federal funds, is available until June 30, 2020. The Department of Developmental Services (DDS) was directed by the Legislature to determine how to allocate these funds. On August 29, 2018, a Developmental Services Task Force considered options. Several possibilities emerged from this discussion including a rate increase for all service providers with a .76% increase in rates. Another option under consideration was distributing this funding for rate increases for only day programs and Community Care residential facilities in “high cost” areas, with an increase of up to 6.23%. DDS and the Department of Finance will make the final decision around the distribution of the “bridge” funding. A formal study of service provider rates is being conducted by DDS. A rate study survey was distributed to all service providers by the consulting firm, Burns & Associates, Inc., in May 2018. The response rate surpassed the minimum requirement of 40% for the study to provide adequate sampling of all service providers. DDS will also develop a family survey and conduct focus groups to gather more information. The service provider survey, family survey, as well as a review of comparable service provider services outside of the developmental services systems all contribute important data to draft recommendations for rate models. These recommendations will be presented to the Developmental Services Task Force. DDS has a deadline to report to the Legislature by March 1, 2019. 2 | TriLine | Fall 2018
The application for federal funding, or “Waiver,” of the Self-Determination Program (SDP) was approved by the Centers for Medicare and Medicaid Services (CMS) on June 7, 2018. This was an important implementation milestone for the first inclusion of 2500 participants in the program state-wide. TCRC will support the enrollment of 110 individuals or families during the first three years. Currently, 14 individuals are in the TCRC Self-Determination pilot project. An additional 96 individuals will then be able to participate. DDS will use the criteria of Ethnicity, Age, Gender, and Disability diagnosis to select participants representative of the statewide regional center population. After the first three years, the Self-Determination program will be available to all persons served through regional centers. Participant selection in the Self-Determination Program was targeted for completion by October 1, 2018. To be considered in this phase of the roll-out, individuals or families had to attend an informational meeting and submit the name of the person served by September 17, 2018. Those who submitted their information after this deadline will be considered for future participation. Orientation materials will be provided this Fall to those selected by DDS to participate in the program. The DDS Self-Determination Program advisory group set the process for enrollment according to thee important steps of outreach, information and the support of local, as well as the statewide, advisory committees. An informational video was developed and posted on the DDS website at https:// www.dds.ca.gov/SDP/ and is available in several languages. Informational meetings were held by TCRC in both English and Spanish. A total of 52 (fifty-two) meetings occurred between March and August of 2018 throughout the catchment area. A video presentation is also available in English and Spanish on the TCRC website at https://www.tri-counteis.org/ self-determination-program/ If you are seeking information about Self
Determination, email self-determination@ tri-counties or opt-in for email notifications when new information becomes available on the web site. Go to “Contact Us”, then “Join Email List” and select the box next to Self-Determination. TCRC has helped to facilitate monthly Self-Determination Advisory Committee meetings over the past two years. The next, and final meeting for 2018, will be held Wednesday, October 24th, 2018. TCRC also participates in the Association of Regional Center Agencies (ARCA) SelfDetermination Committee. Don’t miss the cover article on scamming tactics. We are all vulnerable and it’s good to know the latest tactics of romance and other scammers. Learn how to keep yourself safe. See the next page for examples of truly progressive employment environments for persons served. We need more options like these. And enjoy reading about Josh Phillips on page 7. He’s been greeting travelers daily at the San Luis Obispo train depot, and has made deep connections. This is a great example of person centered planning. He entered his IEP with daily depot visits as a nonnegotiable. If you or a loved one is being medicated for seizures, be sure to see the article on page 14 by our psychopharmacologist. Side effects of some seizure medications may surprise you. We are very pleased to announce that our new dental coordinator role has been filled. Meet Kayla Sejera on page 15. Making progress to support our service provider community around a structure of livable wages is important. We are seeing headway in offering flexible, person centered options of self-determination delivery of services for families and individuals. As we do so, staying involved and informed around all aspects of funding decisions for our system is important. Continue to monitor changes in federal law and learn about processes at the state level. Go to http://www.tri-counties.org/ budget-watch to monitor information about budget issues.
New Perspective on Employment, Think BIG and Re-imagine by Heather Wennergren
A neat woman with two children with Down Syndrome opened a coffee house on the east coast, aligned with her children's goals for employment. It's not only a person centered project, but a great coffee house as well. Amy Wright was recently honored across several major networks, and was a CNN Hero of the Year in 2017. She was quoted as saying, "I would not change you for the world, but I will change the world for you. Laurie Jordan, Director of Rainbow Connection Family Resource Center, was moved by her story. "To have someone say 'I'm going to change the world', that was profound. It wasn't 'I'm taking a step to improve the application process'...it was bold - - changing the world. Our dreams have gotten so tiny as we've hit so many barriers. Let's just do this. Think big and re-imagine. Bring it on, we are ready." Laurie Jordan is ready for change. She noticed something refreshing about Bitty & Beau's Coffee when she visited last Spring. There was a good feeling. She pinpointed, "For me, the biggest thing was seeing the role reversal. The person without disabilities was re-stocking and washing dishes in the back. People with disabilities were talking to people and filling orders, they were running the shop." The person without disabilities was occasionally asked a question. She answered it and walked away, there was no need to stand by and oversee. Laurie wondered how Bitty & Beau's compared to the competition. Was the coffee good? Were the muffins served warm? Laurie wasn't looking for a sympathy shop. She was not disappointed.
Coffee house employee Brent happened to be working when Laurie visited last summer. Laurie connected with Brent's Mom when she came to pick him up. She felt an instant bond when Brent's Mom shared "This is the place for my son." Laurie knew that feeling that a parent gets when they know their child is truly in the right place. Hugs were exchanged within minutes. Laurie recalled the happy tears and added, "You get to the point where you don't think there is a right thing anymore." Laurie discovered another progressive work environment for people with developmental disabilities while visiting the east coast, a bakery named Special Kneads. Their mission is not to hire people with developmental disabilities. Their mission is that no one goes without a birthday cake. Hiring people with disabilities is just part of their business plan. Special Kneads currently has 173 potential employees on the wait list. They take whomever comes up next. Severity of development disorder does not matter to Co-Founder and CEO Michael Kohler, "We look at what they can do, not what they can't." Special Kneads is not a place of wondering, the pervasive attitude is, that with the right supports, everyone can be successful. Laurie loved the vibe of the space, full of treasures; jewelry created by persons served, a magazine rack, a jukebox, everything was "thoughtful". Special Kneads partners with community agencies who help distribute the birthday cakes. The homeless shelter gets coupons for the cakes. Michael comments, "We've been so blessed with the community support."
Selling Joshua's pet treats
Brent & Cassie at work at Bitty & Beau's
Beautiful cakes dotted the refrigerated display case. Laurie noted an employee in the back decorating, "Everyone gets a chance to decorate a cake." Tables can be raised and lowered to accommodate
Staff take a break at Special Kneads
the worker. "Everyone works at the tables together," explained Michael. "No one, due to their needs for accommodation, gets relegated to the corner." People have called the workplace a job training center. Laurie clarified, "Special Kneads is not a job training center. Staff are learning job skills, but this IS their job, they are employees. Laurie reflected on the positive space, "Such respect, I guess maybe that's part of it." Michael's son works at the bakery. Michael was pleasantly surprised to hear his son state "I don't do weekends". His son had always had lots of activities (special Olympics, etc.) but now, he sees his son going to the movies with co-workers. Laurie thought back to when inclusion awareness first surfaced. "My mind was racing with "How will we make this work?' And my kids looked at me and said, 'Why wouldn't this work?' That was a defining moment for me that we CAN change the world, as opposed to feeling overwhelmed." Businesses like Bitty & Beau's place people with developmental disabilities in important roles at work. Laurie invites, "We need to dream bigger. Often, my conversations deal with the barriers, particularly the barriers to employment. We don't even talk about what the employment is. Job training can't be the only route. Special Kneads doesn't take people from a Job Training program. They don't even have a regional center there. If they can do it, why can't we?" Learn more about Special Kneads at their web site www.specialkneadsandtreats.org or on YouTube at youtu.be/mATHAl8gdzc Fall 2018 | TriLine | 3
Scamming Tactics: Protect Yourself and Others ...continued from cover by Dan Van Keuren, Steve Crusinberry and the Ventura County FAST learned that less than 30 SIRs (Special Incident Reports) on financial abuse were filed in the last few years at TCRC. Dan fears that financial abuse is vastly under-reported in our system.“
and more money.
A recent report from Adult Protective Services cites record breaking numbers in Ventura County. 470 APS reports filed in August with many of these alleging financial abuse of elders and/or dependent adults (including people served by TCRC). This is over 21 reports filed daily to an APS staff of sixteen, overwhelmed with this high volume of new abuse cases.
Scammers may target specific online groups via Facebook and other sites that they deem to be vulnerable. If you meet and interact with people through these groups it is best to stay vigilant. If someone has earned your friendship and begins to ask for money, that is a red flag that this person may be taking advantage of you. TCRC Quality Assurance Specialist Katy Robison said that the main type of fraud that TCRC sees with the people we serve is relationship fraud and romance scams.
ROMANCE SCAMS One of the most prevalent online scams is the “Romance Scam.” The romance scam begins with a stranger “befriending” an unsuspecting person online. The scammer then promises to meet but asks for money for transportation or other expenses. These meetings never take place and the scammer always has an excuse and asks for more
Hitting Where it Hurts: Linda's Story After a few strokes, Linda was both a senior and had cognitive issues. Enter Nigerian love scammer. She was head-over-heals and could not be reasoned with. Any family member who questioned her new love was cut out of all communications. Linda had always wanted to be a mother, but that didn't happen. The love scammer sent photos of a darling 6-year-old son whom was described as “motherless”. He maintained a text relationship with Linda for years, sending photos of himself and the boy and promising to join her in the US. Needless to say, it ended badly as Linda mortgaged her home (at one point owned free and clear) to send a hundred thousand dollars to her love. Her sister saved her from homelessness, but the psychological impact was poignant and deep. It played upon her needs for companionship along with her unmet need to mother and care for a child. It hurt everyone who cared about her. 4 | TriLine | Fall 2018
In 2016 over 15,000 romance scams were reported across the nation and that number increases each year.
Santa Maria Service Coordinator Gerri Massey recalls a failed attempt, "A woman on my caseload was almost a victim of a romance scam, although it was caught at the last minute by her SLS provider, the impact to her self-esteem was long-lasting. She really wanted a companion in life and felt deeply betrayed."
FRAUDULENT FEDERAL TAX RETURNS An IRS representative who presented at a local Ventura Financial Abuse Specialist Team (FAST) meeting mentioned that there are thousands of attempts to file fraudulent tax returns using stolen social security numbers. Large data breaches at Experian, Target, and Sony, among others, exposed the social security numbers of over 150 million people. The scammers falsify IRS W-2 and 1099 forms. The IRS is flooded with fake filings although they discover and block many of them. As a preventative measure, the IRS already has an account established for each person. Be sure to visit IRS.gov, Get Tax Record www.irs.gov/individuals/get-transcript. If you discover that someone else has filed before you do or has taken some of your tax return, contact your local IRS office. They can issue a PIN# which will prevent this from happening again as future returns will only be paid if you file with the issued PIN#. Professional tax preparers can also help
you. Refunds do come, but slowly. The IRS will never call you to threaten you to make an immediate payment. Never pay taxes through Apple Pay, or a Gift Card, or send cash or wire money through Western Union.
OPENING CREDIT CARD ACCOUNTS IN YOUR CHILDREN'S NAMES People with children who have Social Security numbers should consider contacting the three Credit Reporting Agencies to request a Credit Freeze (See Play it Safe). Many scammers are now applying for credit cards in children's names and running up huge bills, which eventually affect the credit score of the child.
TELEPHONE THREATS You don’t need a computer to fall prey to scammers. Some of the most prolific cons take place on our telephones. The scams often involve threats designed to frighten people. A scammer may call and say a person is under investigation by the FBI or the IRS and threaten legal action if a fine is not paid. It’s important to remember that these agencies will never contact people in this manner. If the IRS or other federal agency wants to contact you, they will always do so in writing, and never ask for money over the phone.
"ACCOUNT HACKED" TO SEEK LOG IN DETAILS Exploiting fear is a common tactic of phone scammers. What "appears" to be a known agency or company like Apple may call and say your account has been hacked and that they need your log in information and password to try and keep your information safe. This is a scam. No company or bank will ever ask you for your password. Your password is for you alone to access your accounts. If someone telephones you and asks you for your password, it is likely that you are being taken advantage of. Never share your password with anyone.
SWEEPSTAKE & LOTTERY SCAMS Sweepstakes and lottery fraud goes back years. But it is an ever evolving scam that
PLAY IT SAFE! Tips to Lessen Your Chance of Being Scammed Visit tri-counties.org for more info on: • IRS Scam • Jury Duty Scam • Edison Scam • Classified Scams • Craigslist Scams • Voice Signature "Yes" Scams • Kidnap / Ransom Scams • Romance Online Dating Scams • Microsoft Scams • Fake Computer Virus Protection Scams • Mailing Bills and Paying by Check through the Mail • You Have Won the Lottery Scam • Car Repair Scams • Charity Scams • Special Prize Offers
For more information and to report scams: www.ftc.gov and www.ic3.gov keeps up with the times. This scam could involve email, a telephone call or even a letter telling you that you have won a large sum of money. Scammers then request a small fee for the money to be released. Winnings never arrive and the scammers may contact you again. The sweepstakes scammers are professional con men who are very experienced at their craft. When they call with the good news, they act very excited for you. They may even ask what you plan to do with all of winnings. Then they will ask for payment via wire transfer, reloadable bank cards or gift cards. Both the Better Business Bureau and the Federal Trade Commission track these fraudulent scams but prosecution can be difficult because many of these calls and emails originate from countries outside the U.S. To avoid scams like this it’s best to stay vigilant and share this information with others who may be at risk. If you do receive an offer that just seems too good to be true you can report it to the FTC at ftc.gov/complaint.
Things to DO
• Use Strong Passwords • Password protect Phones, Computers, & Networks • Use private settings on Social Media • Review checking accounts & credit card charges • Shred Personal Information • Check your free credit report yearly at www.annualcreditreport.com • Freeze your Credit or Add Alerts - FREE • www.experian.com • www.transunion.com • www.equifax.com • Limit Direct Junk Mail https://dmachoice.thedma.org/index.php
• OPT-OUT of credit card offers 888–567-8688 / www.optoutprescreen.com
• Sign up for the DO NOT CALL LIST, a registry for legitimate solicitors that does not block your number 888-382-1222 / www.donotcall.gov Unfortunately, the DO NOT CALL LIST will not stop scammer calls
HOW DO WE KEEP OURSELVES SAFE? ...BECOME AWARE Knowledge of scamming tactics and a healthy dose of skepticism does wonders. Be sure to talk to anyone in your sphere who you think may be vulnerable. Arm him or her with some new tools. See "Play it Safe" tips above and view more resources at www.tri-counties.org. Go to News and find "Avoiding Scams". TCRC participates in the Ventura FAST (Financial Abuse Specialist Team) and receives support from a wide variety of resources to help prevent further scams and further people becoming victims and to use the expertise on the FAST to get help for people who have been scammed. The Ventura County FAST has representatives from Federal, County, and local Law Enforcement, APS, Gray Law, Private Financial Planners, California Insurance Fraud Unit, the District Attorney's Office, Premier America Credit Union, Ventura County Agency on Aging, a local Neuropsychologist, TCRC, and other agencies.
Courtesy of Judy Christman Yates, DPA
Things to NOT do • DON’T answer unknown telephone numbers; if legit, they will leave a message. Return calls only from people you know. Unsure? Verify the number on internet. • DON'T use a debit card for online purchases. • DON’T believe a check you receive is legitimate, talk to your bank. • DON’T send money to someone you have never met. • DON’T open the door to unknown people. • DON’T respond to unknown text or email messages, delete them. • DON’T sign a contract without someone else reviewing it. • DON’T pay an agency or bill with Prepaid Gift Cards! It’s a scam! • DON’T take a job doing wire transfers or transferring money for strangers.
Taking Advantage of Kindness: Mary's Story When Mary moved in with her elderly mother in Oxnard she began receiving phone calls which ultimately convinced her to send money to a charitable organization to help needy people. Mary started sending $150 - $200 through Western Union each month after she received her SSI check. The phone calls continued, thanking her and telling her what a wonderful difference she was making. One month she was late with the payment and got a frightening message that something bad would happen if she stopped sending money. Mary started borrowing money to keep the checks flowing. Mary's Service Coordinator learned of this and contacted APS. Apparently this scam had reached epidemic levels across the country and many people were shamed into keeping quiet. Western Union was sued for enabling this type of scam and was ordered to set up a system of refunds, but Mary only received a fraction of her money. Fall 2018 | TriLine | 5
Person Centered Planning Reviews - Bringing Hope and Understanding
Edrissa shares his thoughts
Edrissa gathered with his family, Oceanview Day Program and TCRC staff for a person centered planning review. He arranged to have his favorite African foods available for his guests. The cupcakes were a bit hit with his niece, Sowo. Edrissa's mom, Henrietta Bassey, appreciated the process. "Working together, we can help Edrissa to be the best that he can be and reach his highest potential.” Henrietta observed how the setting of the meeting made a difference. “The staff reminded us to talk to him and not about him. I’m grateful for that.” Debbie Hernandez, Executive Director of Operations for Oceanview, and her colleague Sarah Armstrong were both participants in a Person Centered Planning Academy course on facilitating person centered reviews. They facilitated Edrissa's review to meet course requirements. Mary Beth Lepkowsky, Assistant Director, Training & Organizational Development observed the meeting.
Photo Credit: Isaac Hernandez
One theme of the day was the family’s learning around communication with Edrissa. His needs were heard -- from him.
Henrietta listens to Edrissa
6 | TriLine | Fall 2018
As Edrissa's mom stated: “This is the first time that our family has sat together and talked to Edrissa rather than at him. We learned a lot about our son that we did not know!” Edrissa's plan includes provision of services around communication, social skills, and safety. Understanding that skills improvement enhances quality of life, Henrietta stated, “I’m really glad that there are services that are available to my son. He will be getting services for speech and social skills in the community, and at home.” She found the meeting to be productive and essential and was pleased to learn of services available to help her son meet his goals while maintaining his independence. Sarah Armstrong stated, “I learned to open myself, listen more and focus on the purpose of the meeting. And I learned from Edrissa that he is a great helper. He’s caring. We need to be more open to what he needs to support his communication.” Edrissa does know how to communicate, yet sometimes he waits for others to do it for him. People in his circle are committed to being more patient. Mary Beth Lepkowsky discussed how the structure of a person centered review sets the stage for great results in a planning meeting. “A person centered review is a wonderful way to use person centered thinking skills to develop and review a support plan. Unlike other meetings, there’s no table. There is not a group sitting around the room with a few people in charge of the conversation, everyone has a voice - - Edrissa had a voice.”
new every time we do a person centered review - each person is unique, each family is unique, every family dynamic is unique. One thing is consistent, when we speak to the person we are planning with and give them the invitation to really be involved in their planning process, they do.” “The Person Centered Review process brings hope into families," stated Mary Beth. “When families and friends who love and care about the person we are planning with get a chance to talk about what matters most and really feel heard, it just opens so much hope and possibility for them.” This family will take some of what they’ve learned about person centered practices to support their larger goal of starting a school Africa for children with Autism. They founded Junior's Place of Hope in Sierra Leone. The project provides for student needs including meals, health checkups, skills training and community inclusiveness. The Bassey family spends about a month in Africa each year. Edrissa is an inspiration to others. Parents in Africa can see just how far someone can go with an engaged family and the right supports. The Bassey family are having a positive impact on the cultural view of people with Autism in Africa. They are showing what a remarkable difference one family can make. To learn more about Junior's Place of Hope visit juniorsplaceofhope.com
Mary Beth continued, “I learned today that Edrissa has an awful lot to tell us and it was clear to me that he was engaged, listening, and communicating with us. Mary Beth noted that one main take-away for the family was being open to step into Edrissa's space and learn his communication style. One PCT tool, the Communication Chart, will be used by the family and Ocean View staff to support this process. Mary Beth added, “I learn something
Photo Credit: Isaac Hernandez
Photo Credit: Isaac Hernandez
by Patricia Forgey
Sowo with her cupcake
Josh Phillips, the Heart of the San Luis Obispo Train Station Josh Phillips has been going to the San Luis Obispo train Station every afternoon for 17 years to greet the passengers, help out with luggage, and assist however he can. He has made close connections with the regular riders and staff at the station, so much that they greet him with hugs and even an occasional gift. Josh is very systematic, knowledgeable, and has an amazing memory. He understands the ins and outs of operations so well that others have said that he can "run the place". His passion for trains runs deep, from train trips that he takes with his father across the country to watching his collection of train movies. Heather Lakey, Josh’s Service Coordinator, refers to his daily visits as “his most prized activity.” His IPP reflects that either staff or his father accompany him daily to greet trains #11and #14. Josh is very helpful with train staff and passengers at the station. He has a great rapport with regular riders and will assist them with loading and unloading their luggage. Josh’s dad, Michael Phillips adds, “Josh entered his planning meeting with the train visits as non-negotiable.” So Josh’s
circle of support makes it happen! Michael Phillips speculates on how Josh got so hooked on trains, “His mother took him for a train ride to the Bay Area when he was a baby, and I thought maybe he liked the rhythm." Josh's mother Donna elaborates, “Joshua learned to tell time when he was five or six…we’d go down to Grover Beach, get a burrito and watch the train. Then Michael started taking him to the San Luis Obispo station.” Michael recalls, “When he was a teenager, we’d go on Saturdays to get a sandwich at Gus’, and watch the trains. We would always stand back, didn’t want to get in the way. One conductor came over and took Josh under her wing. He began to carry her luggage. We introduced ourselves to people who work on the train. Certain people are more open and friendly than others, and there were quite a few who were that way. They just fell in love with him. With his autism he doesn’t understand much. He does shake hands now. It’s just developed over the years, and now we know the conductors, engineers, sleeping car attendants, the whole team.
It’s really helped him a lot because he’s formed all these relationships… it’s been a real benefit.” Josh’s favorite part? “He loves picking up luggage and wheeling it to the front end." The arrival of the train is very important to Josh. He watches the track very closely and does a little dance when the train comes in. This joyful ritual has garnered him some local fame, and a story about Josh with a video of his dance recently appeared in the San Luis Obispo Tribune. www.sanluisobispo. com/news/local/article171030877.html Thank you for your years of service, your enthusiasm and passion, Josh! You’re a gift to our community.
Josh waiting for the train
New Internship Program Lands M.E. with R & D R&D Transportation Services, Inc. (R&D) welcomes Marietta (M.E.) Powell to their office team. They brought her on through the TCRC internship program. HR Manager Lori Burke adds “The ARC of Ventura County referred M.E. and we are very lucky to have her.” Since May 2018, M.E. has been working part time in a variety of office duties such as stamping mail, organizing office supplies, recycling, and other related responsibilities around the office. Her enthusiasm, positive attitude and friendly demeanor are noticed and appreciated. "I love doing the weekly inspirational quotes," confesses M.E., "I greatly appreciate all my duties and the many co-workers who have taught me. Even though I sound like a nerd, I completely love it here. Working in an office is my greatest dream job." Fall 2018 | TriLine | 7
SANTA BARBARA COUNTY
Events
Santa Barbara County
ALPHA RESOURCE CENTER FAMILY RESOURCE CENTER email: info@alphasb.org www.alphasb.org Santa Maria Office (805) 347-2775 Santa Barbara Office (877) 414-6227 or (805) 683-2145 Lompoc Office (805) 453-7739 Alpha Resource Center offers a wide variety of services and supports to encompass the needs of individuals with disabilities of all ages and at all stages of life. Children & Family Services ~ Assists parents of children with special needs to gain the knowledge and skills to enable their children to be all they can be. Parent-to-Parent ~ and family support, parent-professional collaboration, resource meetings and workshops, information & referral, transition, future planning, and much more county wide! For information and support group info contact: Santa Barbara ~ 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 347-2775 Santa Barbara 9579272 “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 | Fall 2018
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. 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 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) 5698999, ext. 82552 or http://www.sbch.org 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 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 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 10TH ANNUAL HOE DOWN DINNER DANCE PARTY - OCTOBER 2019 Santa Barbara Carriage Museum - Celebrate Down Syndrome Awareness Month. Contact melissa@dsasbc.org for details DSASBC VALENTINE’S DAY DINNER DANCE PARTY Goleta Valley Community Center February 2019. Contact melissa@dsasbc.org CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE) SB or Goleta Location to be determined.
Invite your friends and family to come to out for our Fall Flag Football and Cheer programs. This popular non-contact sport is adapted for children and teens with special needs. Boys and Girls ages 5 - 18 with physical, developmental and/or intellectual challenges will play their final game in our Super Bowl Practice and Family and Community Super Bowl on Saturdays at local school sports fields. Players introduced by sports announcer as they run onto field through a banner and Tunnel of Cheer leaders Half Time performance by our Fall Cheer team After Game Awards and Party for our players. Please come out and Support our players - you will be blessed! Details - Call Laura Herrera at 805/899-3475 Wheelchair users included! Flag Football and CheerLeading Registration forms at www.GoChallengers.org; BASKETBALL SKILLS CLINIC AT PAGE YOUTH CENTER Skills, Drills and Thrills For Kids and Teens with special needs. Beginner and Intermediate skill level groups, Inside and Outside courts. Tuesdays, 3:45 - 5 pm Volunteer buddy support, indoor and outdoor courts. Six Tuesdays every Fall and Spring at the Page Youth Center, 4540 Hollister Avenue, SB PEER BUDDIES Your child will have the opportunity to learn essential social skills from their very own Peer Buddy while having a blast participating in fun activities! Each week, our group will have a different “theme” (theater, sports, arts, cooking). Sign up for individual sessions, groups and camps. Contact (805) 620-PEER (7337) www.PeerBuddies.com ARF READ TO A DOG Tuesday, 3:30 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.
Santa Barbara County www.allforanimals.org, (805) 682-3160 CONNECTIONS AT FRIENDSHIP CENTER Weekly workshops provide brain training designed to help people retain cognitive skills, including memory, logic, language, and math skills. They include fun and challenging games, puzzles, and memory enhancement exercises. Offered in Montecito on Mondays 10 am- 2pm and in Goleta on Thursdays 9:30 am - 1:30 pm. For more information call (805) 969-0859. SURF, KAYAK AND BEACH PLAY WITH BEST DAY FOUNDATION Children and teens with disabilities are invited to experience their "BEST DAY" ever participating in ocean sports and beach play with trained volunteers. The best day foundation provides wet suits, surf boards and kayaks along 3 or four trained volunteers for each participant while they are in the water getting to ride their first waves at Leadbetter beach. Free lunch and awards after. Volunteers needed - please spread the word. Check out their website for details. www.sbsnap.org PYC BASKETBALL SKILLS CLINIC FOR YOUTH WITH SPECIAL NEEDS SKILLS, DRILLS AND THRILLS! Join us for Beginning or Intermediate Basketball Skills Clinic hosted by Santa Barbara Special Needs Adaptive Programs at PYC every Fall and Spring. Clinics adapted for youth with special needs happen every fall and spring on 8 Tuesdays at the Page Youth Center. Coach Claudia and Coach Peter will be with us this spring along with support from community volunteers. You may Register your child at the gym when you arrive. Fee: $45.00 Please call for scholarship information, no child is turned away. 805/452-9039 DANCE CLASS WITH SUE B. DANCE COMPANY DSALA and Onstage Workshop are teaming up to present a monthly dance class and social for teens, ages 12 to 19. The class will include an introduction to dance instruction, and will end with a free form dance party complete with music. Students benefit from learning not only fun dance moves, but also further developing the social and discipline skills that
Honoring VAC Leadership TCRC would like to welcome two new officers to the Vendor Advisory Council (VAC). Sharon Francis and Paula Johnson will Co-Chair and Seth Miller will assume the role of Secretary. Much appreciation to outgoing members Amy Evans and Debbie Bertrando for their leadership and service. VAC meets the first Thursday of the month and provides advice and guidance to the TCRC Board of Directors. come along as an ancillary benefit of the dance process. email info@dasla.org
Congrats to Carly Fulgham! TCRC would like to congratulate Carly Fulgham, named Volunteer of the Year by the Autism Society of America. Carly serves as both President of the Autism Society of Ventura County and Vice President of the Autism Society of California. Carly received the award at the Autism Society of America's 50th National Conference for her unwaivering efforts and advocacy for people and families with ASD. Fall 2018 | 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.
AUTISMO SUPPORT GROUP (SPANISH) Meets 4th Thursday of the month 7:00 PM - 8:30 PM in Oxnard. Location varies, please call for details. Parents meet to share their experiences, resources and information.
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.
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.
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.
EPILEPSY SUPPORT
INFORMATIONAL
EPILEPSY SUPPORT GROUP Epilepsy Support Group (English) Meets first Tuesday of the month 6:30-8:00 PM in Oxnard. Parents meet to share their experiences, resources and information.
“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.
SUPPORT FOR ALL NEEDS
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
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.
ACTIVITIES
SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets last Tuesday of the month 6:30 PM – 8:00 PM in Oxnard. Parents meet to share the experiences and resources.
SOCIAL TIME FOR ADULTS RECEIVING SERVICES FROM TCRC (BILINGUAL) Meets 2nd Sunday of the month 11:00 AM – 12:30 PM at Teague Park in Santa Paula. Come, bring a friend or just come meet new people, for conversation, playing games or for refreshments and some fresh air. AUTISM SUPPORT AUTISM GROUP (ENGLISH) Meets 2nd Wednesday 7:00 PM - 8:30 PM in Oxnard. Location varies, please call for details. Parents meet to share the experiences they’ve had with their children with Autism as well as share and learn about resources. *No Children Please. 10 | TriLine | Fall 2018
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.
SANTA CLARA SUPPORT GROUP (SPANISH) Meets 3rd Tuesday of the month 11:30 AM – 1:00 PM at Neighborhoods for Learning (NFL) in Fillmore. Parents of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources. “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30 AM –
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 Early Start Managers, 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, 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
Ventura County
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 ASL STORYTIME Meets every 3rd Friday of the month at Barnes & Noble (4820 Telephone Rd, Ventura) from 7:00 PM to 8:00 PM. Bring your Deaf, Hard of Hearing, and Hearing children to watch a Deaf Storyteller sign stories in American Sign Language! AUTISM SUPPORT AUTISM SOCIETY VENTURA COUNTY (ASVC) Supporting individuals with Autism and their families with resources and referrals in the Ventura County area of California. To speak with a parent mentor on the phone call 805-496-1632. For more information http://www.autismventura.org/events/ 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, adoles-
cents 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
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 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 THE TRANSITIONS SUPPORT GROUP For parents of children and young adults (Continued) Fall 2018 | TriLine | 11
Ventura County
SAN LUIS OBISPO COUNTY
With each issue of the TriLine, we provide information on some of the resources available to families within the Tri-Counties area. Please call to confirm dates and times of events. Check with your Service Coordinator for information on other resources available to you in your area.
aged 10 – 28 and young adults who have special needs aged 18-28. This group is designed to bring together families with representatives of local and state agencies, organizations, and groups to offer up to date information, insight and direction. Parents have direct access, the opportunity to ask questions and to be heard. For information on the next date and speaker, or if you would like to be added to the email list or if you have questions, please contact Susan at susan@baukus.net designed to bring together families with representatives of local and state agencies, organizations, and groups to offer up to date information,
insight and direction. Parents have direct access, the opportunity to ask questions and to be heard. For information on the next date and speaker, or if you would like to be added to the email list or if you have questions, please contact Susan at susan@ baukus.net UNITED PARENTS A parent run non-profit that helps families raising children 4-18yrs with emotional, mental, and behavioral disorders. For info call Hannah Abitia 805-384-1555.
San Luis Obispo County PARENTS HELPING PARENTS FAMILY RESOURCE CENTER email: php@ucp-slo.org www.phpslo.org San Luis Obispo Office Atascadero Office 800.456.4153 x3277 805.461.7415 or 805.543.3277 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 12 | TriLine | Fall 2018
PHP Library (Open by Appointment), 940 Ramona Ave, Suite M, Grover Beach PHP SPONSORED EVENTS **For ALL PHP events please RSVP to php@ucp-slo.org or call 543-3277. 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. Monday, November 26 and December 17, from 10—11:30 am by appointment PHP 940 Ramona Ave, Suite M, Grover Beach. RSVP to 543-3277 or php@ucp-slo. org. PARENTS OF YOUNG ADULTS WITH DISABILITIES SUPPORT GROUP Come and talk about the transition out of school, SSI, independence, social opportunities and more. We include parents of individuals between the ages of 14 and 40 for this support group. This month’s event will be held on: Tuesday, November 27, December 18, January 15, from 10:30-11:30 am. PHP Library, Atascadero FINAL RULE Many state and federal laws will be altered in the days, weeks, months and years
ahead, that, over time, will mean changes to the way services are provided to Regional Center-served families/individuals. This training will give individuals and their families an overview of these new laws, the purposes behind them, as well as the challenges they may create.... January, 2019. TCRC conference room, SLO 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 SUPPORT GROUP: PARENTS OF CHILDREN WITH EPILEPSY Does your child have epilepsy/seizures? New support group forming in North County. Please contact PHP to be put on an interest list and you will be notified as soon as a date is made: php@ucp-slo.org ORIENTATION TO SPECIAL EDUCATION Join SELPA Director Liz Smith for an opportunity to learn more about special education programs here in SLO County. The next presentation will be held on: Wednesday, November 28 from 5:30-6:30 pm at Morro Rd Education Center, Atascadero RSVP 782-7301
UCP SPONSORED EVENTS TEENS CLUB Join UCP's newly revamped Teens Club for a movie November 17th, 2018 from 3:00 pm to 5:30 pm. Movie will be at Downtown SLO Cinemas. On December 8, join us for an outing to the Madonna Inn! Participants pay $30 and that includes transportation and food. See you there! For more information call UCP at (805)543-2039 or email us at: contact@ucp-slo.org. ARTS FOR LIVING Has a lot of music opportunities going on – check out http://www.artsforliving.org/ and click on programs – they have two music clubs in SLO and one in Atascadero. GLEE CLUB Is an inclusive community choir joyfully singing a variety of styles of music and improvisation in a supportive environment! – They meet every Wednesday, from 5:306:30 pm at the UCP SLO Office, 3620 Sacramento, Suite 201. Call Laura to Reserve YOUR Space for either group: 805-225-6101 or email artsforliving@ucp-slo.org LOCAL EVENTS PEOPLE FIRST HOLIDAY DANCE $5 cover with proceeds to be donated to a local non-profit Friday, December 14 from 7-9 pm Ludwick Center, 864 Santa Rosa St, SLO. Call Bradlee at 782-8890 for more information. YOUNIQUE FITNESS Social/emotional/mental/physical fitness classes for those with disabilities (different abilities) integrating the wide-ranging benefits of music, movement, and mindfulness, where everyone is welcome and everyone succeeds! For more info check the website first: https://mindfulkindfulyouniversity.com/ younique-fitness/ or contact Dee DiGioa at 805-270-5523 or mindfulkindfulyou@ gmail.com WREATH MAKING Come out and enjoy our Annual Wreath Making Workshop at Jack Creek Farms. Tickets are $35 per wreath and all supplies are included as well as local sweet treats. This family friendly event is a benefit for Special Olympics.
Saturday, December 1, 11am-1pm. (805)544-6444, kshannon@sosg.org 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 543-3277 ~ Listen, Encourage, Nurture, Strengthen ~ ONGOING EVENTS ADULTS WITH DISABILITIES CONTINUING EDUCATION (AWD) CUESTA COLLEGE To provide an accessible program of active learning that enables adults with disabilities in San Luis Obispo County to achieve their individual employment, education, and life goals. In support of this mission, AWD is announcing a series of cost-free, ongoing informational sessions for. For more information please contact: Greg Halfman, AWD Program Liaison, (805) 5463100, EXT 2858, gregory_halfman@cuesta.edu REACH: REALISTIC EDUCATION ADDRESSING CONDITIONING AND HEALTH A new YMCA class for young people with disabilities. Participants will be divided by age and/or abilities based on parent surveys and instructor observation. Any skill level welcome between ages 6-25. The goal of the program is to empower those on the spectrum with independent living skills, physical activity and fun! 6 week karate class begins March 24. San Luis Obispo. Siblings/aides welcome. Contact April for more information 5438235. alewallen@sloymca.org 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. For more information, call Henry Herrera at (805) 440-3516 *bilingual
SAN LUIS OBISPO COUNTY
San Luis Obispo County
NORTH COUNTY ADAPTIVE SPORTS AND RECREATION Do you want to incorporate more fun, sports-like activities into your child’s life? This program offers weekly events, including swimming and kickball! Swimming is held at the Atascadero Kennedy Fitness in the indoor pool: Mondays from 6:00-7:00pm, Other activities may include line dancing and more. Check the calendar on the Website: http:// ncasarp.org/ and contact by email at info@ ncasarp.org WHEELS TO WATER Empowering people with disabilities through adaptive kayaking. www.wheelstowater.com, (608) 514-3843 Morro Bay BEYOND BOUNDARIES Artistic movement and expression for dancers and musicians with special needs. www.coastalperformingartsfoundation. org/beyondboundaries. Grover Beach 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 and more can be found at www. sloautism.org PARENT SUPPORT GROUP PASO ROBLES. Contact Debra at 235-8038 or contact@ sloautism.org Grupo de apoyo para familias 5:30-7 pm, Paso Robles. Contacta a Brenda en Español al 805 975-9924 (or Debra in English at 805 235-8038) o por correo electrónico: contact@sloautism.org *Evento en Español
Fall 2018 | TriLine | 13
Medicine That Can Induce Violence: The Case Of Antiepileptic Drugs (AEDs) by James O’Hanlon, Ph.D., Psychopharmacologist Most people know that alcohol and certain illicit drugs can promote feelings of hostility leading to impulsive aggression. Less well known is that many medicinal drugs from numerous therapeutic classes can do the same in susceptible individuals. The class of drugs for controlling seizures in epilepsy (anti-epileptic drugs, AEDs) is used to illustrate the point. The choice was not because AEDs are collectively the worst in this respect but rather because the individuals who must use them did not generally suffer from a mental disorder that predisposed them to aggressive behavior before starting the medication. Another reason is that epilepsy often accompanies developmental disorders and if severe, is sufficient by itself to qualify an individual for Regional Center services. The aggression inducing properties of antiepileptics was brought into sharp focus by an FDA “black-box” warning attached to the 2012 approval of perampanel (Fycompa) for treating epilepsy: Serious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger and homicidal ideation and threats have been reported in patients taking FYCOMPA…FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening. Perampanel followed the standard testing procedure for an AED headed for approval. In the culminating clinical trials, perampanel in different daily doses or placebo were added, double-blind, to whatever AEDs epileptic patients had been taking in unsuccessful attempts to control their seizures. Individual trials were scheduled for 6 months. During this period, anger-related side effects emerged in 12% and 20% of the patients receiving the lowest and highest maintenance doses as compared to only 6% of those receiving placebo. More disturbingly, 3 of 4,368 patients in all trials expressed homicidal ideation and/or threats, which FDA viewed as life-threatening. Yet perampanel has proven to be one of the most effective 14 | TriLine | Fall 2018
AEDs and for that reason entered the market in 2013 and remains there today. This is in accord with neurologists’ belief that seizure control is primary. A sound principle: self-perpetuating seizures can be lethal and even self-terminating seizures can be brain-damaging if frequent and severe. Neurologists are therefore willing to accept considerable risk for adequate seizure control. Besides, perampanel is only one of many AEDs that can produce lifethreatening reactions. The implementation of prudent safeguards minimizes the respective risks while not eliminating them entirely. FDA’s late recognition of the seriousness of AED-induced aggression naturally raised the question of whether any of the previously approved AEDs possess this property. To answer the question, neurologists specializing in treatment of epilepsy undertook the first retrospective survey of psychiatric and behavioral sideeffects of 18 AEDs approved in the USA before perampanel.1 They reviewed the records of 4,085 patients whose seizures started at the age of 18 or older and who took one or more of these AEDs from the year 2000 to 2014. The purpose was to compare rates of psychiatric and behavioral side effects associated with different AEDs. Rates of “Psychiatric” side effects – depression, psychosis, anxiety and suicidal ideation – were relatively low and are not the topic of this article. “Behavioral” side-effects were more prevalent and largely (84%) related to expressions of anger: i.e. irritability – generally negative mood with a tendency to lose temper easily; tantrum – sudden outburst of anger out of proportion to stressor; and aggression – behavior aimed at causing harm to self or others. The investigators further distinguished between “intolerable” side effects that led to dose reduction or discontinuation of the AEDs supposed to be causing them and those that did not. Sixteen AEDs were associated with low rates of anger-related side effects; i.e., < 4%. The two exceptions were tiagabine (Gabatril) and levetiracetam (Keppra) . Tiagabine was associated with a 10.9% rate of irritability but the group taking it was by far the smallest (46) and the data
may be unreliable. The same cannot be said for levetiracetam: the group taking levetiracetam was the second largest (1,890) in the survey. The first table below shows the overall rate of anger-related side effects among patients taking levetiracetam in comparison with the average rate of side effects in patients taking any of the other AEDs. The second table is similarly constructed for comparing rates of intolerable anger-related side effects.
Overall Rates of Side Effects (%) Irritability* Aggression* Tantrum Levetiracetam
12.49
1.43
0.74
Ave. 17 other AEDs
2.66
0.45
0.17
* Statistically significant difference: Levetiracetam rate higher than average rate of other AEDs
Rates of Intolerable Side Effects (%) Irritability* Aggression* Tantrum Levetiracetam
9.79
1.16
0.47
Ave. 17 other AEDs
2.07
0.35
0.18
* Statistically significant difference: Levetiracetam rate higher than average rate of other AEDs
The rates of anger-related side effects were significantly greater for patients taking levetiracetam than any combination of AEDs without levetiracetam. Other studies have indicated that the rates are even higher in children and individuals with intellectual disability than typically developing adults. Levetiracetam, which otherwise has a benign side effect profile, resembles perampanel in respect to its tendency to induce aggressive behavior. That is not to say that either highly efficacious AED should be avoided. But it does indicate that neurologists prescribing them should inform patients and care providers of the possible anger-related side effects and if informed of their emergence, consider substituting another AED. Chen B, Choi H, Hirsch LJet al. Psychiatric and behavioral side effects of antiepileptic drugs in adults with epilepsy. Epilepsy & Behavior 2017; 76: 24-31.
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TCRC Announces New Dental Coordinator by Steven Crusinberry
The smiles have been bright around the TCRC offices lately as we welcome Kayla Sejera, our new Dental Coordinator. Kayla is a registered dental hygienist in alternative practice (RDHAP.) TCRC is very excited to be Kayla able to provide this needed service. ”Oral hygiene has been linked to one’s health and wellbeing," said Anoushka Moseley “therefore, ensuring that individual's dental needs are met is critical.” RDHAPs are advanced licensed dental
Jonas Shares Joy by Nancy Black
The Hilton family have created a beautiful long-term vision for their community and son Jonas: a delivery service for fresh vegetables and maybe even eggs. Cindy and Aaron Hilton began considering this a few years ago when Jonas turned twelve and his behaviorist, Brooke Foster, said, “Okay, it’s time to think about developing skills for adulthood.” Cindy elaborated, “Our son loves visiting people. What skills does he need for that? How can he visit people? We imagine this being his forever home. One day, my husband and I will move out. We have a little farm in the backyard, enough for trees and chickens and a large garden. We thought if Jonas grew his own vegetables he could deliver to neighbors, maybe sell eggs or make deliveries on his bike with a farm basket.”
hygienists whose primary focus is providing access to dental care for people who have a hard time traveling for cleanings. Kayla will be working directly with TCRC’s providers throughout our service area in all three counties to assure that everyone who is receiving services has access to dental care. Communication and understanding are important factors in all fields of healthcare including dentistry. Kayla will improve access to dental care and act as a communication liaison between the dental care providers and the people receiving services to ensure that the most effective, sustainable treatments are used. Individuals with different abilities and varying tolerances
may require custom tailored, diverse treatment plans and Kayla works directly with local dentists & RDHAPs to craft treatment and preventive maintenance plans that are suited to each person’s needs. Determined to improve outreach, within one month, Kayla coordinated 14 day program dental hygiene clinics and has plans to launch more. TCRC has funded the clinics to provide additional preventive care where Denti-Cal falls short. Kayla will also be focusing on education for both care providers and persons served. If you have any questions about dental services available through TCRC, contact Kayla at ksejera@ tri-counties.org.
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. focused on being part of a community and having a purpose in life, feeling productive and like you’re making a contribution. This fulfills all of that, as Jonas knows everyone in our neighborhood now and we didn’t know anyone before. He has his basket with bags and stickers.”
This budding family business is still in the preparation phase. Orders will be placed through the Jonas Shares Joy Facebook page (www.facebook.com/JonasSharesJoy). “We’ll post what we can share," says Cindy.
Jonas is non-verbal, communicating with an app on his iPad. Cindy knows her son loves his work, "He tells us ‘Make deliveries' on the iPad. We didn’t consider side benefits like how the people who do Respite for him help on the project. In the past, it was difficult to keep people for a long time; now they have a project together. He has his routine, in his safe neighborhood… it’s really working well for him.”
They're building their vision. “We thought a lot about what makes people happy. We
“Jonas has a job. He has a project and a purpose. He shares joy in his community
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.
by growing and delivering vegetables to his neighbors.” Everyone wins!
Jonas and Jessica make deliveries
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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
Tri-Counties Regional Center has been preparing for the launch of the Self-Determination Program for many years. In June of this year an important milestone was achieved when Centers for Medicare and Medicaid Services (CMS) approved the application by the Department of Developmental Services (DDS). DDS can now take the next steps to ensure that all eligible people receiving services and their families can consider using SelfDetermination as a method to fund and select services. By early November, 2500 people across the state selected for the program will be notified and receive orientation materials. As a parent and TCADD Board member, I’m always looking for ways to support a viable reimbursement system for service providers. A rate study and a full analysis of possible rate structures is currently being conducted. I look forward to
this report and learning about the recommendations that the Legislature will review in March 2019.
travelers. I'm also pleased to hear that the Dental Coordinator is in place. Learn more about her new role on page fifteen.
This TriLine cover story hits some critical topics. Any time vulnerable people, and that’s all of us in some way, are targeted, it’s important to be aware of existing scams. Learn how to keep yourself and others safe and get some valuable information from this article.
Person centered planning is a great support for families and individuals receiving services. The “PCT” approach supports diversity, focusing on the particular needs and preferences of the person. This approach was very effective for the Bassey family, who recently participated in a planning session with their son.
All people with disabilities and diverse backgrounds, neurodiversity being one of them, deserve a quality life in their community. As the concept of diversity expands in conversations at work and in the community, I would like to hear more about successes around “neurodiversity.” It is important to support, encourage and recognize businesses that have implemented a progressive and inclusive approach. Read about Bitty & Beau's and Special Kneeds Bakery on page three. Enjoy learning about Josh Phillips and the creative approach to his daily visits to the San Luis Obispo train depot. He's become a regular, supporting depot staff and befriending
TCRC staff and board are committed to improving the quality of life for people with developmental disabilities. Your input helps shape the policies and advocacy efforts, so please provide your suggestions to your Service Coordinators and via the TCRC website at www. tri-counties.org/who-we-are/ contact-us/ Holiday season is rapidly approaching. I want to extend my best wishes to all persons served, staff, Board members, their families and provider communities who give us tremendous support.
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 Ada Gonzales Ramon Hooper Howard Kraus Ralph Morales Robin Rosso Mark Wolfe 2019 Upcoming Board Meetings Feb 8............................ 6:00 PM (SB) Mar 9...........................9:00 AM (SB) 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 Feb 13.....................1:00 PM (SLO) Mar 20........................1:00 PM (SB) May 15..................... 1:00 PM (SV) July 10...................... 1:00 PM (SM) Sept 18................... 1:00 PM (OX) Oct 16...................... 1:00 PM (AT)