A Publication of Tri-Counties Regional Center | Winter 2016
Championing the ABLE Act Cover Story 01 Championing the ABLE Act
Recurring Topics 02 From the Executive Director 09 Calendar of Events 16 Greetings from the President
Visio n:
Persons with developmental disabilities live fully and safely as active and independent members of their community.
Mission:
TCRC provides person and family centered planning, services and supports for individuals with developmental disabilities to maximize opportunities and choices for living, working, learning and recreating in the community.
Photo Credit: Sherri Harnisch
Featured Articles 03 Practicing Service, Community Connection and Humility at Ralph’s 03 Adult Education Block Grant: Enhancement of Post-Secondary Education 06 Dream Until Your Dreams Come True 14 What Autism Is and Is Not: Implications for Pharmacotherapy 15 My Life Inside (Column) Brad, Brianna & Julianne Pitzele on the steps of the US Capitol
It began with a promise Brad Pitzele of Thousand Oaks had many aspirations for his unborn daughter. He didn’t know what she would excel at, but he knew that she would be amazing. “In the wake of the diagnosis of my firstborn child, all of those dreams were thrown away. I didn’t know if I was allowed to have a dream for her. Now I know that my dream is for her to have her own dreams, and be able to live the best life that she can.” Brianna was the first of three children for Brad and Julianne Pitzele (with 5-yearold Tyler and 2-year-old Abigail). “She deserves to have a fair shake in this life,” her father said. “There is a group of folks in America who are excluded from partaking in the American dream. If I can help pave the road for other folks too, that would be amazing.” Brad began by writing to his Congress members. He asked for assistance persistently to anyone he thought could help, and he got results. He shared with Assemblymember Julia Brownley (Thousand Oaks) the story that motivated him to take action. “A day after Brianna was born with Down syndrome,” he wrote to her, “a wonderful nurse told us to have high expectations. She told us people with DS were getting married, graduating high school, going to college, and getting jobs. They could do so much more than people thought even ten years ago. She told us it was okay to have dreams for Brianna. This diagnosis need continued on page 4 Santa Barbara | Ventura |
San Luis Obispo |
www.tri-counties.org
From the Executive Director by Omar Noorzad, Ph.D.
The Budget Fight Governor Brown signed the Fiscal Year 2015-2016 California State Budget on June 24, 2015. The Governor also signed the 17 Trailer Bills that implement the budget bill. A full copy of the FY 2015-2016 enacted budget can be found here: http://www. ebudget.ca.gov/. The main budget bill, AB 93, was passed by the Legislature on June 15, 2015 on a party line vote that contained higher revenue estimates and increased spending proposed by the Legislative Democrats that was opposed by Governor Brown. For Developmental Services AB 93 contained a very modest targeted 5% rate increase, effective July 1, 2015 for Supported Living Services, In-Home Respite Services, and Supported Employment Services, and a 2.5% rate increase for Transportation. It also included funding for 1 Dental Coordinator and 1 Forensic Coordinator for each of the 21 regional centers. Effective January 1, 2016 AB 93 contained a 2.5% across the board rate increase for all provider categories not covered by the July 1, 2015 increase and a 2.5% increase for the regional center Operations budget. However, upon further negotiations between the Governor and the leadership of the Legislature a revised budget deal was reached, SB 97, that eliminated nearly all of the rate and spending increases approved by the Legislature except for Child Care, Expansion of Medi-Cal for over 175,000 children regardless of immigration status, and restoration of 7% service hours for all IHSS recipients for at least one year. Additionally, the Governor called for the Legislature to convene two extraordinary (special) sessions dealing with Transportation & Infrastructure funding and Health Care funding issues. Developmental Services funding was included in the Health Care special session. Throughout 2 | TriLine | Winter 2016
the summer, the Senate and the Assembly held several hearings but no action was taken. To ensure that Developmental Services issues continued to remain on the Legislature’s radar, the Lanterman Coalition consisting of regional centers, service providers and numerous advocacy organizations held several protests including a very large protest that drew upwards of one thousand people from across the State to Sacramento advocating for an immediate 10% across the board rate increase for regional centers and service providers and reforming the funding formula for regional center operations and service provider rates to ensure adequate long term sustainability of funding for our system. While several new bills that sought to increase funding for Developmental Services were introduced during the special session, the Legislature ultimately adjourned on September 11, 2015 for the remainder of the year without reaching any comprehensive solution or agreement on any of the health related issues that included Developmental Services. While it is very disappointing that the immediate funding crisis issues for Developmental Services were not addressed in either the regular or special legislative sessions, it seems the political tide in Sacramento may have shifted in favor of recognizing and addressing the funding crisis facing Developmental Services. It will be important for the Lanterman Coalition and advocates across the state to continue to build on this year’s advocacy efforts until we prevail in having the Legislature and the Governor address our urgent funding crisis. The coordinated advocacy efforts will be resurrected in January 2016 when the Governor issues his budget proposal for FY 2016-2017. Tri-Counties Regional Center (TCRC) has developed a “Budget Watch” page on the TCRC website (www.tri-counties.org). Current information and resources related to the budget and the special session of the Legislature are posted on this page and will be kept updated. Opt-in to our newsletter on our web site and get an email alert when new information is posted by checking “Budget Issues”.
Adult Education I’m happy to report that we are seeing results in TCRC’s advocacy for the implementation of AB 86, the Adult Education Bill of 2014, which was funded this year. All four community college regional plans on the central coast adopted TCRC’s recommendation for accommodated post-secondary vocational certifications for adults with disabilities. This should help significantly in our long term efforts to improve employment opportunities for people with developmental disabilities in the Central Coast area. Stay tuned for additional updates in future articles as we work with the our community colleges to implement this initiative. Self-Determination Services In 2013 Senate Bill 468 established the Self-Determination Program. This program will provide children and adults served by the regional center, and their families more freedom, control, and responsibility in choosing services and supports to help them meet the goals in their Individual Program Plan (IPP). Watch for more information from DDS as this program gets rolled-out. You may also opt-in to email alerts on this topic at our web site. The Lanterman Act Turns 50! 2016 marks the 50th anniversary of the landmark Lanterman Developmental Disabilities Services Act which requires the State of California to assume responsibility for necessary services for persons with developmental disabilities. Celebratory projects are in the works across the state. Look for announcements about TCRC activities honoring this landmark legislation. While 2015 was a very busy year and we achieved some success, our work is not done. We will need to continue our relentless advocacy efforts in 2016 on behalf of persons with developmental disabilities on all necessary fronts at the local and at the state level. I deeply appreciate our Board of Directors, staff, service providers, our community partners and every one of you who support our mission to ensure a high quality of life for the persons we serve.
Practicing Service, Community Connection and Humility at Ralphs by Heather Wennergren & Nancy Black | Photos by Isaac Hernandez
Wearing a bright neon vest over his Ralphs shirt to help drivers see him in the parking lot, Luis Prado pushes carts around. A lot. He’s been employed at Ralphs for over 14 years. He greets regular customers with a cheery smile and a wave, and comments, “What I love about my job is that everyone here really treats me well, especially my supervisor, and the others who work here. I love it. I get tired, but that’s okay, because it’s a job, and a lot of people don’t have jobs.” Luis’ supervisor Rinaldo has been a great advocate for this model employee. Customers love Luis. Some even admit to shopping at this Ralphs due to Luis’ friendly service. “He spends every moment rounding up carts. He is truly one of the hardest working people I know. He is always cheerful, positive, helpful,” says Cathy Berry of TCRC. “He’s a wonderful person.”
The attentiveness Luis offers to customers goes beyond greetings and helping with their carts. Shopper Lynda Bell recalls a time she lost a precious item in the lower parking lot. Luis not only helped her look, but found the item and then walked her to her car. Lynda comments, “I have always remembered the great customer service, when he went above and beyond. I consider Ralphs one of the better stores in town because of that service. Luis is an asset to his employer, and has a great smile and helpful spirit.” Luis has a warm countenance that draws others to him. His Service Coordinator, Michael Marvin, knows how conscientious he is. “When Luis says ‘Have a nice day,’ it’s genuine.” Noticing a recorder taping Luis’ comments, a customer approached. She smiled at Luis, and asked about the interview. When hearing that Luis had been selected to be featured in the TriLine newsletter, she beamed, and threw her arms up in joy. “It’s about time! Hurray! After so many years!” “Almost fifteen,” he smiled. “You could throw a party!” she suggested. “I could throw a party,” Luis considered. “My mom, my sister, my brother… they’re proud of me. I’m very, very happy. I have
Luis at Work
a job. It’s hard sometimes, but I have no complaints.” When asked what he likes most about his work, he mentioned how important it is to be able to contribute to his family by bringing home income. Luis also admitted shyly, “I am nice with people.” Luis is bilingual, a highly practical benefit that he brings to his role at Ralphs. “Yes,” he mused, “sometimes my English gets mixed up. It’s okay. I took ESL classes at City College. I consider that my English is pretty good, but Spanish is my first language. I came here from Mexico City twenty years ago, when I was 27. I’ve seen in movies, for example, about the culture in Japan… the important thing is service, to provide good service to people. In order to communicate well with people, there’s a key word: humility. We don’t all have it. Sometimes we fail. We need to have humility, to avoid mistakes, and to help people. I’ve seen a lot. But here, everything’s fine, even peaceful. I live close to work, and I can walk here in five minutes. I’m happy here. I know everyone.” Over the years at Ralphs, Luis Prado has developed deep community connections. His work and practices providing humility and service to others attract people to his store, where they, like he, feel truly welcomed.
Adult Education Block Grant: Enhancement of Post-Secondary Education by Patricia Forgey
Assembly Bill 86 was the education trailer bill passed in 2013. AB 86 provided $25 million to fund two-year grants for the development of regional plans related to adult education. (http://ab86.cccco.edu/ Overview/Legislation.aspx) Each of the community college regions (72) reviewed current adult programs and heard input. A statewide plan was approved by the Community College Chancellor’s Office and Department of Education. TCRC advocated for adults with disabilities in each community college regional planning process.
The Consortia members on the central coast are: Allan Hancock Community College Consortium, San Luis Obispo County Adult Education Consortium, Santa Barbara AEBG Consortium and Ventura County Adult Education Consortium. To view the plans of each consortia, go to http://aebg. cccco.edu/Consortia.
Recommendations for vocational certificate programs that are accommodated for adults with disabilities were included in each regional plan on the central coast. Topics like specialized assessments, assistance for use of technology, and work readiness training were included in the recommendations.
TCRC’s activities included leading or participating in work groups, attending Town Hall meetings, reviewing draft plans and providing input. Each region’s plan varied acccording to the needs of the people in that area.
The term ‘Adult Education Block Grant’ is now being used to reference the funding for new programs that were approved by the California Legislature. To read more about the Adult Education Block Grants go to http://aebg.cccco.edu/. Winter 2016 | TriLine | 3
Championing the ABLE Act
(Continued from page 1)
by Heather Wennergren, Media Coordinator
Photo Credit: Sara Weir
The ABLE Act passed resoundingly and with bipartisan support, 404-17. “I was overcome with joy,” Brad said. “There were tears streaming down my face. I was smiling and waving at Brianna. She was blowing kisses at me and yelling ‘Daddy!’ from the floor up to me in the mezzanine.”
Brianna pauses for the camera while listening to President Obama
not be a tragedy; we could celebrate her life. My hope for her is that she can lead a life where she feels like she’s fulfilled, and that she’s contributing to society in a meaningful way.” “That nurse went on to tell us that we needed to start saving for her future, that Brianna had a pre-existing condition and would probably never be able to afford private health insurance. She would need Medicaid, which meant she couldn’t have more than $2,000, nor earn more than $700 a month. She could have a house or a car, but only if we gave it to her - she could never earn them for herself. My heart was once again thrown into a deep despair. Was this even American? How could my one-day-old daughter have doors shut in her face?” “The nurse left. It was Julianne, Brianna and I in that hospital room alone. I looked Brianna in the eyes, and told her, ‘Brianna, I do not like these laws. They are not fair, and you and I are going to have to change them.’ I had no idea what that entailed, but I knew it was needed. It was a promise I had just made to my little girl in front of my wife, the two most important people in my life. It was a promise I must keep.” Taking Committed Action Brad Pitzele kept his promise to his wife Julianne and to Brianna by sending hundreds of emails and making phone calls to California politicians, asking for their 4 | TriLine | Winter 2016
support. “I was asking them to support (the Affordable Care Act) because it eliminated the preexisting condition clause for health insurance,” he said. “Later I ended up asking them to sponsor another piece of proposed legislation—the ABLE (Achieving a Better Life Experience) Act.” “The ABLE Act allows folks with disabilities to earn money (up to $14K per year, in new tax-free savings accounts) without losing access to Social Security and Medicaid benefits,” Brad explained. Like college and health savings accounts, these new accounts can be used to cover basic needs like education, healthcare, transportation, housing and other expenses.
Brianna was invited to the House floor on December 3 to cast the final, winning vote before legislators in Washington D.C. Congresswoman Julia Brownley (CA 26th District) invited Brianna to the floor for the vote. Brad crafted her a three-page thank you letter with photos. Touched, she shared it with Congresswoman Cheri Bustos from Illinois.
Congresswoman Bustos left a phone message after that for Brad. “I’m good friends with Julia Brownley; Julia shared with me the note you had written her. I loved reading that Brianna was born in Elgin, Illinois. It was a great read, and brought tears to my eyes. I love how you were blowing kisses to Brianna when she was on the floor with us… Your note was filled with such love and affection.” Today Cheri Bustos co-chairs the Congressional Task Force on Down Syndrome. “Brad has done phenomenal things,” said Mark Priceman, of the National Down Syndrome Society. “He has taken it to a completely different level. He had a huge part in getting most of the California delegation in the House of Representatives and both legislators to co-sponsor the ABLE Act.” Brad doesn’t see the ABLE Act as the end of the road. He describes it as, “a step in the right direction.” The language in the law today is a placeholder to remind future legislators to consider the needs of people with disabilities. A seed that has taken root is harder to pull out. Brad believes that in the future, legislators will have to take this issue more seriously, now that it’s in the law. Currently, Brad is supporting California bills AB 449 and SB 324, that would create ABLE accounts to implement the federal law, allowing savings “for the purpose of supporting persons with disabilities to maintain their health, independence, and quality of life.” The California bills are co-sponsored by the Pitzele’s California state representatives, Senator Fran Pavley (Agoura Hills), and Assemblywoman Jacqui Irwin (Thousand Oaks). Brad has also worked to make changes to special education and general education legislature. Among other issues, he is supporting the Lanterman Coalition goals for a
10% increase in system-wide funding. At the end of the day, Brad Pitzele can rest easy knowing that he accomplished something for his daughter. He reflects, “I’ve fulfilled a promise.” “We need champions,” said President Barack Obama Brad’s advocacy for the ABLE Act was so consistent and effective that the National Down Syndrome Society asked him to be their representative at the White House. Pitzele and his wife and daughter were invited by the National Down Syndrome Society (NDSS) to Washington DC to represent the NDSS at the 25th anniversary of the Americans with Disabilities Act with President Barack Obama at the White House, and to witness the ABLE bill’s passage. Last year the NDSS gave Pitzele the NDSS Down Syndrome Ambassador of the Year / Champion of Change Award. “It’s incredibly humbling,” Brad said while receiving the award, “You don’t do something like this to get an award or an accolade. I do it because one day Brianna and my other two children will be adults. And I want to be able to tell them that I did everything I could to make their lives as good as they could be.” It was there that the Pitzeles heard the President of the United States say, “Days like today are a celebration of our history. But they’re also a chance to rededicate ourselves to the future — to address the injustices that still linger, to remove the barriers that remain.” “We need champions in this,” the President said. “We definitely need champions.” Listening to President Obama, Brad was moved by the message. “What he said that I found really touching was that for the next 18 months, he was going to continue to push forward an agenda that’s friendly to the disability community, and even beyond. So he seemed to say that his legacy beyond his presidency might be tied to helping folks with disabilities.” Governor Brown signed the ABLE Act on Oct 11, 2015.
Advocacy Tips • Reach out • Speak your true story • Share your gratitude • Share images by social media • Craft a powerful “ask” • Build relationships • Keep asking
self-respect and self-worth, for fulfilling my obligation to my little girl, and for what that means for tomorrow's new parent of a child with special needs - a parent that will never have to hear those painfully exclusionary words. Forever indebted, Brad Pitzele.”
“Don’t be afraid to connect with your representatives. They’re just normal people, and they work to serve us.” Brad encourages advocates to share their fears or vulnerabilities. "Many of us have powerful stories. When I email legislators I send a photo of me along with photos of my family. I want them to know that we are real people."
Brad’s Social Media Tips “I really only have a personal Facebook page,” Brad related (www.facebook.com/ brad.pitzele). Not claiming to be a social media expert, Brad shares: • It is a visual medium, and providing a picture will gain you greater attention and engagement. • It is also helpful to use hashtags to outline a cause. We used: #passtheABLEact, it can amplify your message. • Consider engaging your representatives on social media using positive messages; a lot of their staffers are younger folks who are very social media savvy. Don't assume they do not want to help, or that they even understand the issue. • If you do use your Facebook account for advocacy with legislators, be mindful of what else you are posting there.
Brad believes that "the ask" is a critical part of the message. He follows, "I usually lead with what I'm asking them to do, and then I give an explanation of why." Strong networks of personal relationships are crucial. Brad explains, "It's all about building a relationship over time. I may email a legislator monthly over the course of a year.” Brad adds with a grin, "I'm persistent enough that they may want me to go away, yet sweet enough that they don't want to kick me out." He tallied up representatives, and got in persistent communication. “We have 53 Congress people and two senators in the state. I probably emailed every single one of them, every month,” Pitzele said. “I found that for every ten emails I sent, usually I could get one positive response.” Brad also believes in the importance of saying thank you. "Gratitude is everything. I thank them for their action, and I tell them what it means for my life and for my child's life." When Brad thanked Congress members Julia Brownley and Cheri Bustos for their support, he included intimate family photos of hospital visits and Brianna’s babyhood, concluding his heartfelt story with, “You learn so much more about humanity when you are powerless. I will never be able to repay you for what you have done for my spirit, for the story of Brianna's greatness that will fuel her
Stay in “The Know” To get alerts when new information is posted to the "Budget Watch" section of the TCRC web site, visit the site at www.tri-counties. org, click on "Join our Email List" in the right margin. Put a check next to "Budget Issues," and be sure to select your local TCRC office. Calls to Action are posted on the site, along with CDCAN reports, advocacy messages from ARCA, UCP and The Arc, plus the report to the TCADD Board from TCRC Executive Director Omar Noorzad.
Effective graphics from Brad’s #passtheABLE act campaign
Winter 2016 | TriLine | 5
Dream Until Your Dreams Come True by Patricia Forgey
project management by following Cal Poly’s learn-by-doing philosophy. Every spring, the home of a physically disabled individual is selected for this remodel.” This past spring, the students reviewed several applications, and they unanimously selected Jocelyn for the makeover of her home.
Mom Jennifer with Jayden & Jocelyn
Path around Dyer home
Entering the Dyer home is a pleasure. The sunny and open configuration of the downstairs provides an accessible area for this family. Jocelyn, a 21 year-old woman, has required total care since the onset of Rett Syndrome, a degenerative disease that left her as a toddler with diminishment of skills for walking, talking and self-care. Mother Jennifer Dyer has built the family’s life around the needs of her daughter and bright-eyed 7th grade son, Jayden.
lights up when she sees her brother.”
Located in a peaceful rural setting, the Dyer’s home is surrounded by grazing pastures for horses. An equestrian trainer, Jennifer has a spark for training young people to ride. Most apparent is her love for her kids.
And after a back surgery at age 13, once again they were told she would not walk. “We showed them again, didn’t we?” Jennifer smiles big as she hugs her daughter.
“We don’t have a typical life,” she says. “We can’t go to the beach, to the water park… things that other families do. We can’t go to Disneyland. But I don’t care. Jocelyn is happy and healthy. Everybody loves her.” When asked what she has learned from this journey, she pauses, “Patience… I’ve learned to be patient. I was 21 when I had Jocelyn; she has always been with me. I don’t even realize what I may have missed.” “We can’t do anything fast, like run into a restaurant. We have to get Jocelyn in and out of the car… it’s not an easy task even to go get milk. Giving her a shower requires patience. If she gets cold she gets upset. We just have to stay calm.” When reflecting on the most gratifying aspect of her life as a mom, Jennifer quickly responds, “(I have) the happiest, sweetest children. Jocelyn is always smiling, and 6 | TriLine | Winter 2016
As trying as life might have been over the years, it is clear that the threesome is a loving family. Lifting up Jocelyn, a petite angel at just 75 pounds, Jennifer stands her up, plants a big kiss on her cheek and declares, “She had surgery on her legs when she was 9, and they told us she would never walk. But we proved them wrong didn’t we?”
Jayden is an assistant to mom in all things home and Jocelyn. Mom proudly shared, “I don’t have to ask him more than once. He’s there doing what needs to be done.” Jayden, a 12-year-old who is a straight-A student, a baseball and basketball player, has found another interest as well. When asked about his plans for the future, he declared, “I want to build houses!” Having 18 Cal Poly engineering students do a makeover on his home has inspired Jayden’s interest in engineering. Jocelyn was chosen by PolyHouse for renovation of her home. PolyHouse is part of a graduate level project management course taught by Dr. Roya Javadpour, offered in the Industrial and Manufacturing Engineering Department by the professor at Cal Poly in San Luis Obispo. “My primary inspiration was to create a unique and memorable learning experience for my students while making a difference in the life of someone in need. The course is designed for students who want to master
“Most sources of inspiration derive from the desire to make a difference,” observes Dr. Javadpour. “With that in mind, by creating an exciting, bold vision to improve the quality of life for a family in need, I have been able to elicit extraordinary commitment from the students that extends far beyond a grade.” “We have managed to develop and maintain a set of loyal donors that have helped us throughout the years, mostly local businesses and individuals. We are very grateful for their generosity, since our project would not be possible without their support,” comments Dr. Javadpour. “In addition to the community support, the students in my undergraduate project management class organize a 5k/10k run, and all proceeds from that event benefit PolyHouse project.” Find the list of donors at www.PolyHouse.org/new/donors/index. php. The house has been truly transformed. The list of changes is phenomenal for this family. Walls have been moved to open up the downstairs living room and dining area. Blinds and ceiling fans were installed. Another wall was removed in an upstairs bath to incorporate space for a roll-in shower for Jocelyn. The kitchen was remodeled to include a bright and sassy configuration of white cabinets, black counters and sparkly mosaic backsplash. And the main feature saving time (and Mom’s back) is the installation of the chair lift. This special lift goes up the stairs to the bedrooms and baths. Jocelyn got her story in front of the ambitious engineering group through a contact with Joe Hoeflich, Manager of the San Luis Obispo TCRC office. Joe received a message from PolyHouse and asked for input from staff. Darcy Bishop, Service
renovation of her home, Jennifer spoke with emotion. “This was more than I could possibly have expected. I thought that they were going to do just the lift and the shower.” The family had moved out for three weeks, and they didn’t see the final results until the project was finished. The team interviewed Jennifer and Jayden as well, and the selections were made for the family based on this input.
Jocelyn rides special lift up the stairs
“I kept teasing them (the students), ‘When do we move that bus?’” Jennifer smiled, referring to the moment when a family sees the changes in their home in the reality show “Extreme Make-Over.” Donations that the students secured include a new sofa in the family room, and Jocelyn’s new bed. Jocelyn’s pretty bedroom has a new colorful comforter, brightly painted walls and lovely wall hangings. The room was formerly pink, and the students selected purple, which Mom agreed was the perfect choice.
Adapted bath room
Coordinator in Atascadero at the time, immediately thought of this family. Darcy knew that Jennifer had a chair lift, but no way to install it. Jennifer was carrying Jocelyn up and down the stairs several times a day. Darcy’s expectations of the home remodel were the installation of the lift for the stairs and possibly some modifications downstairs. “I didn’t recognize it when I walked in!” she exclaimed. “I thought, Is this the same place? It was like Extreme Home makeover.” Darcy described the remodel as “thoughtful – changing walls, arranging for donations – making the home so nice for this family.” When asked about how she feels about the
The students built a new pitching mound for Jayden as well as installing a pitching net. A glove was donated by a local sporting goods company. A student sat with Jayden to let him know, “This isn’t just for your sister! Tell us what you like.” As a result, a game room was also designed for Jayden upstairs. In addition to the inside transformation, Jocelyn now has a path to roll her wheelchair from the front door to the truck/van/car, as well as new views out of the kitchen and family room windows. Sustainable landscape beautifies the back of the home. Jennifer pointed out that a drip system was installed, and that some of the students’ parents were involved as well. “We just love our house!” she smiled. When asked about the impact on the students by participation in PolyHouse projects, Dr. Javadpour states, “Obviously, I am very proud of the work of my students and how they have been able to improve the quality of life of individuals with disabilities. I also believe the project impacts and touches everyone that is involved,
Remodeled kitchen
not just the individuals with disabilities. By engaging our community, students who participate in service learning projects receive a broader education than those working on strictly technical projects. Through service, students learn about some of the problems faced by other people, becoming more sensitive to the needs of others.” When reflecting on the students’ experience, Dr. Javadpour observes, “As a result of participation in this course, students witness the impact they can have on society. They develop the ability to communicate with diverse audiences and sharpen their critical thinking skills by reflecting on their experiences. They feel a sense of pride knowing they have helped a family in need. They learn the value of a committed team, realizing that nothing worthwhile comes easily! (The project) also impacts our donors and the many professionals who volunteer their time and services. They see how the students pour their hearts into a project, and they too come back to help and provide their support, year after year.” Jennifer’s main take-away from this experience is how caring people can be. “It’s amazing that the community donated these items to us. When people see us, they say, ‘Hey, you guys were the PolyHouse project!’ In the bank, the grocery store, they recognize us!” Jennifer’s sister also contributed to the remodel. She gifted the family with the special decorative sign now hanging in the kitchen. It reads, “Dream until your dreams come true.” Winter 2016 | TriLine | 7
SANTA BARBARA COUNTY
Events
Santa Barbara County
ALPHA RESOURCE CENTER FAMILY RESOURCE CENTER email: info@alphasb.org / www. alphasb.org
Santa Maria Office Santa Barbara Office 805.347.2775 877.414.6227 805.683.2145 Alpha Resource Center offers a wide variety of services and supports to encompass the needs of individuals with disabilities of all ages and at all stages of life. Children & Family Services ~ Assists parents of children with special needs to gain the knowledge and skills to enable their children to be all they can be. Parent-to-parent and family support, parent-professional collaboration, resource meetings and workshops, information & referral, transition, future planning, and much more! Resource Libraries ~ offer over 2000 titles on developmental and other disabilities. Located at Tri-Counties Regional Center offices in Santa Maria and Santa Barbara. Mobile library services are available. Call for hours or specialized assistance. Katie’s FUNd™ ~ provides social and recreational opportunities for teens and young adults with developmental disabilities. Contact: Amy Buesker at 683-2145 x127 or abuesker@alphasb.org. 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 PARENT TO PARENT SUPPORT AND EDUCATION ACTIVITIES 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 working together to eliminate barriers between able bodied individuals and those with disabilities. $3 fee, $1 refreshments. DJ & Live Sound, DJ of Ability, Chris Benedict 805.729.1512 or djofability@gmail.com 8 | TriLine | Winter 2016
SANTA BARBARA SPECIAL NEEDS ADAPTIVE PROGRAMS WEBSITE A wide variety of 100+ community resources, events and information supporting our area special needs agencies. Find activities for all ages posted on website. www.sbSNAP.org PARENT-TO-PARENT SUPPORT Sponsored by Special Needs Network. Meets 2nd Monday of every month, at noon at Denny’s at 1019 E. Main Street, SM. Contact: Diana 805.937.8756. 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. LOMPOC AUTISM SUPPORT GROUP A support group for parents and other caregivers of children diagnosed with autism. Contact: Polly Bleavins 805.347.2775 or email pollyb@alphasb.org. ALPHA PARENT GROUP A parent support group meets regularly at Alpha Resource Connections library at TCRC. Contact Jennifer Griffin at jgriffin@ alphasb.org or call Alpha at 805-683-2145. ART OF AUTISM The Art of Autism has various events around Santa Barbara County throughout the year. Visit www.the-art-of-autism.com or email theartofautism@gmail.com.
SBATA@YAHOOGROUPS.COM Online group for parents of special needs children, email info@asasb.org. 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. AQUATIC WELLNESS AND EXERCISE TUOHY FOUNDATION AQUATIC CENTER 2415 De la Vina Street, SB. Wheelchair accessible with depths from 3 1/2 ft. to 6 1/2 ft) Aquatic exercise equipment is available to pool users. Aquatic Wellness and Exercise Programs are open to the public and instrumental in helping participants meet their personal fitness goals. Organized by Cottage Hospital Rehabilitation Center. Apts. required for classes. phone (805) 569-8999, ext. 82552 or http:// www.sbch.org NORTH COUNTY PARENT SUPPORT GROUP Meets regularly in Lompoc. Come share your experiences, meet new people and get resources while your children play. All welcome. For details, contact Mariana Murillo at 805-291-1136 or oscarlpz_8@hotmail.com SPECIAL OLYMPICS SOUTHERN CALIFORNIA Santa Barbara County Region offers yearround sports programs and competitions for 350 children, teen, and adult athletes from Carpinteria, Santa Barbara, and Goleta. Fall sports for youth and adults are set to begin in August. Sports include floor hockey, bowling, soccer, tennis and softball. Call 805-884-1516 to learn more. DOWN SYNDROME ASSOCIATION OF SANTA BARBARA COUNTY Contact Melissa Fitch at Melissa@dsasbc. org or (805) 886.4411, www.DSASBC.org “321 PLAYHOUSE” FAMILY PLAY GROUP for families who have children birth – 5 with Down syndrome. Meets monthly at various locations to help families get connected and stay connected. Siblings welcome! Tara Vazquez (803) 269-6313 or
twalling.kidsatplay@gmail.com. www. DSASBC.org VALENTINE’S DAY DINNER DANCE PARTY February 6, 2016, Goleta Community Center. Family and friends dinner dance party to celebrate all of our special sweethearts. Volunteers and donations needed. Contact Melissa (805) 886-4411 7TH ANNUAL DSASBC BUDDY WALK AND FESTIVAL Saturday, June 18, 2016, Chase Palm Park Great Meadow, Santa Barbara – Volunteer, Fundraise, Sponsor. Contact Melissa at (805) 886-4411 or Melissa@dsasbc.org 7TH ANNUAL “HOE DOWN” WESTERN DINNER DANCE PARTY Save the date, October 2016. Santa Barbara Carriage Museum. SUMMER CAMP AND ACTIVITY GUIDE Available online at www.sbSNAP.org SANTA MARIA NONVIOLENT CRISIS INTERVENTION TRAININGS Program focuses on management of disruptive, assaultive, out-of-control behavior. Initial Course designed for school staff. Refresher Course: to renew certification. Phone: 805-683-1424 or http://sbcselpa. org/Events.aspx INCLUSIVE CHEERLEADING! Spring and Fall - Santa Barbara location. Challenger Cheerleading - Inclusive of children and teens of ALL abilities to learn cheer, dance and stunts for community performances. Instructed by local Cheerleading coaches/camp instructors. Fees: $35 per child includes practice uniform and pom poms. Call 805-681-9165. Organized by college students and community volunteers. YOGA FOR ALL Inclusive for all abilities *4-6 week sessions run throughout the year at the Goleta Valley Community Center. Come stretch and flex with Jessica Parson and Rachel Walsh; bring your own mat, towels and water bottles. $5 per session, drop-in anytime. Parents welcome to join, 805-681-9165 or www.sbSNAP.org
Santa Barbara County YOGA TUESDAYS SB Parks and recreation at the Carrillo Rec Center. Call Julie to Register 805-564-5421.
indoor and outdoor courts. Six Tuesdays, every Spring and Fall from 3:45 - 5 pm. Check schedule at www.sbSNAP.org.
SHAKE RATTLE AND ROLL DANCE CLASSES Ongoing on Thursdays, 4:30 - 5:30 pm at the Carrillo Recreation Center, Santa Barbara. Drop in and join a session when you can - $10. per class. info@sbSNAP.org
SUPER BOWL INVITATION - FINAL GAME! January 23, 2016 from 10am to 12pm, Bishop Diego High School Stadium Help needed. Retta at 805-452-9039
SB MOPS = MOTHERS OF PRE-SCHOOLERS Every other Wednesday during the school year from 9am to 11:15am – Calvary Chapel Santa Barbara. We have put this site together to help all you moms out there keep track of current MOPS activities as well as have a place to contact us or just learn more about our group! Organized by Joylyn Kovacevich Joylyn@sbmops.com CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE) Now through Jan 23rd, 201510 – 11:30 am at Foothill School in Goleta: Volunteers Coach and buddy your child to enjoy the sport thrill of Flag Football (non-contact) OR Cheerleading basics at same time and location. Boys and Girls ages 5-18 with physical, developmental, intellectual challenges are invited to participate in this increasingly popular sport. Wheelchair users included! Sign up NOW! Flag Football and CheerLeading Registration forms at www.GoChallengers.org. Organized By: Central Coast Challenger Volunteers info@ GoChallengers.org, 805-681-9165 SOCIAL BOOK CLUBS FOR TEENS AND ADULTS Groups meet weekly in a public location to enjoy reading a chapter a week, encouraged & guided by volunteer facilitators. Sign up with Jennifer at jenfeen@gmail.com. Popular and Classic books available at K – 2nd grade level and above. “Emergent” readers welcomed – members do NOT need to be readers to participate as many will develop a love for reading and learn. BASKETBALL SKILLS CLINIC AT PAGE YOUTH CENTER For kids and teens with special needs,
SANTA BARBARA COUNTY
PEER BUDDIES Feb to April, 2016. 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 or group weekly one hour sessions. Contact 805.620.PEER (7337), PeerBuddies.com TEEN EXTREME SOCIAL CLUB Meets weekly for outings @ activities – contact Amy Buesker @ 805-683-2145. ARF READ TO A DOG Tuesdays, 3:30pm Santa Barbara Public 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 first-come, 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 and open to the public. www.allforanimals.org, (805) 682-3160 TRANSITION AND RESOURCES FAIR 2016 March 16, 2016 from 3:30pm to 6pm, San Marcos High School Cafeteria Are you in High School or Jr. High and have an I.E.P.? Are you in a place of transition? Start preparing for your future after High School. Learn about Adult Services (day programs, residential services, employment services, recreation and education); other agencies like TCRC, Housing Authorities and Department of Rehabilitation; out of the area residential services such as Taft, UCLA and Wayfinders. You really don’t want to miss this! 805-961-9200 x1125 Winter 2016 | TriLine | 9
VENTURA COUNTY
Ventura County RAINBOW CONNECTION FAMILY RESOURCE CENTER email: rainbow@tri-counties.org Oxnard Office: 2401 East Gonzales Road, #100, Oxnard, CA 93036 Monday through Friday 9:00am to 5:00pm (805) 485-9643 Main Phone (800) 332-3679 Toll Free (805) 485-9892 Spanish Line Simi Valley Office: 2635 Park Center Dr., Suite A, Simi Valley, CA 93065 Monday through Friday 9:00am to 5:00pm (805)823-2325 Main Phone (805) 485-9892 Spanish Line Website: http://rainbowconnectionfrc.weebly.com or find us at Facebook: http://www.facebook.com/RainbowConnectionFRC. Rainbow Connection provides support, information, training and activities for families. Here is a list of on-going support groups. We encourage you to attend a support group at least once. You will be surprised at how much it will help you and how much you can help others. As there might not always be a support group available for a specific diagnosis, we try to provide a parent match upon request. Please contact us to register or for a copy of the current “What’s Happening at Rainbow?” schedule of activities. ACTIVITIES SOCIAL TIME FOR ADULTS RECEIVING SERVICES FROM TCRC (BILINGUAL) Meets 2nd Sunday of the month 11am – 12:30pm at Teague Park in Santa Paula. Come, bring a friend or just come meet new people, for conversation, playing games or for refreshments and some fresh air. AUTISM SUPPORT AUTISM PARENT SUPPORT GROUP (ENGLISH) Meets 2nd Tuesday 7 - 8:30pm in Oxnard. Families meet to share the experiences they’ve had with their children with Autism as well as share and learn about resources. 10 | TriLine | Winter 2016
AUTISMO SUPPORT GROUP (SPANISH) Meets 4th Thursday of the month 7pm 8:30pm in Oxnard. Families meet to share their experiences, resources and information. DOWN SYNDROME SUPPORT DOWN SYNDROME SUPPORT GROUP (SPANISH) Meets last Tuesday of the month 6:30pm – 8pm in Oxnard. Families have open discussions on issues related to raising children with Down syndrome. SUPPORT FOR ALL SPECIAL NEEDS *NEW GROUP* TRANSITION AT AGE 3 DISCUSSION GROUP (ENGLISH & SPANISH) Meets 1st Monday of the month 10am11:30am in Simi Valley & Meets 1st Wednesday of the month 10am-11:30am in Oxnard. Are you wondering how it all works? Are you confused? This is a good opportunity to talk about transition with other parents who have been through it. Join us at Rainbow for a cup of coffee and to talk. *NEW GROUP* NOW AN ADULT: MOVING FORWARD…“SUPPORT GROUP FOR CAREGIVERS” (ENGLISH) Meets 3rd Monday of the month 10:00am 11:30am at Simi Valley. A parents/caregivers Support Group for families who have an adult family member ages 18 and older with special needs served by TCRC. ADULTHOOD (22YRS THRU LIFE, TCRC PERSON SERVED): THE JOURNEY CONTINUES “SPECIAL FAMILY NETWORK” (ENGLISH) Meets 2nd Tuesday of the month from 7pm – 8:30pm in Oxnard. Parents/caregivers support group for families who have an adult family member ages 22 and older with special needs. Join us as we endeavor this journey together as well as share resources for our grown children. SANTA PAULA SUPPORT GROUP (SPANISH) Meets 1st Monday of the month 5:30pm - 7:00pm at Heritage Valley – ARC in Santa Paula. Families of adults served by
TCRC meet to share the experiences and resources. SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets the last Tuesday of the month 6:30pm – 8pm in Oxnard. Families meet to share the experiences and resources. SANTA CLARA SUPPORT GROUP (SPANISH) Meets 3rd Tuesday of the month 11:30am – 1pm at Dolores Park in Fillmore. Families of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources. “APRENDIENDO JUNTOS” SUPPORT GROUP (SPANISH) Meets 2nd Friday of the month 10am – 11:30am at Valley at Rancho Simi Community Park. 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. “FAMILIAS UNIDAS” SUPPORT GROUP (SPANISH) Meets last Monday of the month 8:30am – 10am at Mill Park in Santa Paula. Families of young children with special needs meet to share the experiences they’ve had with their children with special needs and learn about resources. Simi Special Parents Network (English) Meets 3rd Tuesday of the month 9:30 – 11am in Simi Valley. INFORMATIONAL THE IEP BASICS (ENGLISH OR SPANISH) * Individual Appointments can be scheduled upon request. Special Education basic IEP information will be shared by a Rainbow parent. Knowing your rights and responsibilities can help you be a more effective advocate for your child. “ONE - PAGER” DEVELOP A ONE - PAGER FOR YOU OR YOUR FAMILY MEMBER Create your child’s (or adult served by TCRC) One- Pager. This is a great way to share valuable information. Simply give a copy of the One -Pager to the people who will be interacting and working with your child/ adult – the teacher, aides, therapists,
etc. Give us a call and we’ll help you put one together for your child. For Persons Served, call to schedule appointment. HEALTH CARE NOTEBOOKS Do you have a hard time keeping track of your health care information? Create your own personal notebook with a Rainbow staff person and/or other parents; learn more about the transition process and get suggestions that might help with guidance from one of our staff and/or other parents. Individual For Persons Served, call for appt. WHAT’S NEXT AFTER EARLY START? FOR YOUR CHILD WITH SPECIAL NEEDS Will your child be turning 3 years old and transitioning out of the Early Start Program? Changes can be confusing. Let’s make the transition a little easier. Join one of our “What’s Next After Age 3 Discussion Groups” by calling Rainbow for the next meeting date or to schedule an individual appointment! OTHER COMMUNITY SUPPORT GROUPS (The following support groups can be contacted directly.) ACTIVITIES THE AKTION CLUB OF SAN BUENAVENTURA Sponsored by the Kiwanis and The Arc. Club membership offers opportunities to form friendships and develop leadership skills through volunteer work and projects. Meets at 5:30 p.m., the first and third Thursdays of the month at Pizza Man Dan’s on Santa Clara Street, Downtown Ventura. There is no support or transportation provided. Free. For further information call Patty Schulz at 805-218-7807 or http://www. cnhaktion.org/about.html
Ventura County
and recreational opportunities for kids 5 years or older. Caregivers are welcome. Fun Club offers games, handcrafts, inside sports, holidays, and birthday celebrations and dancing. Meets 5:30pm – 7:30pm at Wilson Senior Center, 350 N. C Street in Oxnard. Cost: FREE For information call 805 385-8019. CONEJO RECREATION AND PARK DISTRICT’S THERAPEUTIC RECREATION IN THOUSAND OAKS For info. (805) 381-2739 or http://www.crpd. org/parkfac/therapeuticrecreation/default. asp FRIENDSHIP CIRCLE Designed to foster relationships between community teenagers and children. Programs offered are Sports Night, Friends at Home, Gymnastics Programs, Sunday Circle, and a Winter Camp that includes Rock Climbing and Sibling workshops. Agoura Hills (818) 865-2233, www.FriendshipCircleCa.org SPECIAL OLYMPICS VENTURA COUNTY Offers training and competition opportunities in 10 different year-round sports at over 20 different training sites throughout Ventura County. The program not only provides people with intellectual disabilities with physical fitness and athletic competition, but also social interaction and community involvement. For info. (805) 654-7787 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
7-9pm in which guest speakers present on topics important to parents, and parents are able to mingle, socialize and network. Free onsite childcare is usually provided. Call 805-496-1632 or http://www.autismventura.org/events/
VENTURA COUNTY
ASAP: ASPERGER’S SUPPORT ADOLESCENTS PLUS! (English) A social support group for teens and young adults with Asperger’s or HighFunctioning Autism. For information log on to www.vcasap.org or call 805 419-9934. VENTURA COUNTY AUTISM TALK ON FACEBOOK Both for any parent or professional, or interested community member in the Ventura County or nearby area. VENTURA COUNTY AUTISM TALK ON YAHOO GROUPS https://groups.yahoo.com/neo/groups/ venturacountyautismtalk/info and Ventura County Autism Talk on Facebook https://www.facebook.com/ groups/1636384583315658/ FETAL ALCOHOL SPECTRUM SUPPORT SOUTHERN CALIFORNIA FASD INFORMATION & SUPPORT NETWORK Support group for Moms of children and adolescents ages 5-18 years old. Contact Joeli Gutfleisch 805-796-7683, joelig17@ gmail.com or https://sites.google.com/ site/socalfasdnetwork/ SUPPORT FOR ALL SPECIAL NEEDS
AUTISM SUPPORT
AAC PARENT SUPPORT GROUP This is a great opportunity to meet other families with children using communication systems (e.g., picture systems, speech generating devices). Contact and RVSP to Traci Peplinski. Space is limited. (805)8443003 traci.peplinski@gmail.com
BRANDON’S BUDDIES A free play date for children of all abilities. 1st Sat of the month 11am – 1pm, at Brandon’s Village, 25801 Thousand Oaks Blvd. in Calabasas. Go to www.kenproject.com to view calendar.
AUTISM SPECTRUM AND RELATED DISORDERS SUPPORT GROUP Group meets 5:30-7:00 the 3rd Monday of each month at the Camarillo Health Care District. Free and open to all. Contact Jeff or call 805-388-1952, ext. 100 to RSVP.
EFMP SUPPORT GROUP Meets 2nd Wednesday of the month at NBVC Port Hueneme Naval Base. Support group for active and retired military families with children with special needs. Contact Gil Cajala at gil.cajala.ctr@navy.mil
FUN CLUB THROUGH THE CITY OF OXNARD SPECIAL POPULATIONS PROGRAM This program is designed to provide social
AUTISM SOCIETY VENTURA COUNTY (ASVC) ASVC holds Community Talk Nights usually on the third Friday of the month from
PAUSE4KIDS INC. – ENGLISH PAUSE4kids provides information, support and services for residents of Ventura County & nearby areas. For more info go
(Continued) Winter 2016 | TriLine | 11
VENTURA COUNTY
Ventura County to http://pause4kids.org/ or call 805-4979596. PAUSE4kids hosts Monthly Special Education Advocacy Assistance designed to assist parents in advocating for their child’s needs. The meeting is held the first Wednesday of every month, September through June, from 7:00- 8:30 pm. Contact Special Ed Law facilitator: Kathy Greco malibulaw@aol.com
SAN LUIS OBISPO COUNTY
CONNECTING HIGH SCHOOL & POST SECONDARY PARENTS GROUP (BILINGUAL) *GROUP WILL BE RESUMING January 2016 Meets quarterly on the 2nd Tuesday of that
month from 7pm-8:30pm in Oxnard. *Group alternates from English to Spanish. Please call to get current details. This is an informal group of parents with students in high school and post secondary education who meet to share information, resources and concerns on their children’s future. SPECIAL PARENT’S CAFÉ An informal group of parents who meet to share information, take a break and make new friends. For more info contact Silvia at (805) 265-6111 or email: spc.moorpark@ gmail.com
THE TRANSITIONS SUPPORT GROUP For parents of people aged 10 – 28 and young adults aged 8-28. Brings together families with representatives of local and state agencies, organizations, and groups to offer up to date information, insight and direction. Parents have direct access, the opportunity to ask questions and to be heard. Contact Susan at susan@baukus.net UNITED PARENTS A parent run non-profit that helps families raising children with emotional, mental, and behavioral disorders. Office (805) 3841555, or 24/7 line (805) 551-0472.
San Luis Obispo County 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 of Upcoming Events to interested families. Contact: 805.543.3277 (SLO) or 805.461.7415 (Atascadero) or php@ucp-slo.org www.facebook.com/ParentsHelpingParentsSLO/ PHP SPONSORED EVENTS ** For all PHP events in Grover Beach, SLO or Atascadero, please RSVP to php@ucp-slo.org or call 543-3277. 12 | TriLine | Winter 2016
SOCIAL SECURITY PARENT SUPPORT GROUP A monthly support group for family members who have questions about their children’s SSI, Medi-cal or IHSS. We offer insight, research and support with navigation through the various issues, paperwork and services involved with disability benefits. Specific topic TBD. Friday, December 4, from 10-11:30 am PHP Library, 3450 Broad St, Suite 111, SLO RSVP to php@ucp-slo.org or 543-3277 GET CONNECTED AT PARENTS HELPING PARENTS For parents and their children ages 0-5 years old. Come check out our new resources! Meet other parents and PHP’s staff at BOTH OUR Atascadero and San Luis Obispo offices one Wednesday a month. November topic: When was the last time you thanked one of your therapists, teachers, doctors, etc for their services and care? PHP will provide a stamp and envelope plus creative materials to make thank you cards and send them. Attend for a chance to win a Starbucks gift card! Wednesday, November 18 from 10:30-11:30 am at both offices. December topic: Creative time for caregivers with adult coloring books- it’s all the rage! Attend and you have a chance to win a prize from Whiz Kids!
Wednesday, December 9 from 10:30-11:30 am at both offices. San Luis Obispo • PHP Library, 3450 Broad St, Suite 111, SLO Atascadero • PHP Library, 7305 Morro Rd, Atascadero ORGANIZE YOUR CHILD’S RECORDS- SPANISH PHP proporcionará una carpeta con materiales para ayudarle a organizarse. Traiga todos los documentos de su hijo/a! PHP will help Spanish speaking parents to organize their child’s educational and medical records, materials provided. Friday, December 4, 10am-12pm. PHP 940 Ramona Ave Suite M, Grover Beach Confirme su asistencia 805-543-3277 or php@ucp-slo.org MAKE & TAKE Does your child receive behavior or speech services? Parents can build materials for their children’s intervention program 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. This work-
shop is offered the third Monday of every month. Mon, November16 from 9-11:30am by appointment, PHP 940 Ramona Ave, Suite M, Grover Beach. RSVP required. IN-HOME SUPPORTIVE SERVICES (IHSS) Presenter Kat Lauterback, IHSS Program Manager will give an overview of IHSS, newest updates, eligibility requirements, program structure and tasks covered based on individual need. Thursday, December 17, 6:30-8 pm. PHP, 3450 Broad St, SLO LOCAL EVENTS AWSD ADVISORY COMMITTEE Cuesta College is currently designing an educational program for adult students with substantial disabilities which is expected to launch in fall 2016. Currently an AWSD (Adults With Substantial Disabilities) Advisory Committee is being formed to solicit input from students, parents and community members. Contact: Matthew Green Ph.D., Director of Workforce Economic Development & Community Programs at Cuesta at 805 5463100, ext 2229, email: mgreen@cuesta.edu PARENT ORIENTATION TO SPECIAL EDUCATION SELPA, CAC and PHP invite you to a parent orientation with SELPA director Jill Heuer. Topics will include SELPA services, brief history of IDEA, IEP process, seeking solutions and raising a child with a disability. Thursday, November 19 at Lucia Mar USD, Arroyo Grande 5:30-6:30 pm Thursday, January 14, 2016. TCRC Office Building, 3450 Broad St, SLO. 5:30-6:30 pm For more information and to RSVP call 781-7301. ANGELS BEARING GIFTS Angels Bearing Gifts brings happiness to people with developmental disabilities on the holidays. Sponsor someone yearround! Donations needed: money, gift cards, and stocking stuffer items. Donations are tax deductible. Wrapping parties: Dec. 18th in SLO and Dec. 21st in Atascadero Deliveries on December 24th between 10 am - 12 noon), children welcome! Contact Debra at 805-461-7415
ARTS FOR LIVING MUSIC TIME: EARLY INTERVENTION MUSIC THERAPY GROUPS Bonding musical interaction for you and your little one(s), ages 0-3. Set goals and encourage and support your child’s: social skills, creativity and emotional expression, cognitive development and learning, speech and language, musical development, and gross and fine motor skills! All while having fun and sharing lots of SMILES! Music Time is led by Hannah Kenyon, MA, MT-BC Board Certified Music Therapist Courtney’s House 311 6th Street Templeton, CA 93465 (530) 712-5095 LIMITED CLASS SIZE. Current session full- call to find out more. $72 for six sessions. NORTH COUNTY ADAPTIVE SPORTS AND RECREATION PROGRAM Meets each Thursday evening 6-7:30 p.m at Colony Park in Atascadero. Currently we are playing kickball in the gym and all are welcome! SPECTRUM YOGA CLASSES FOR KIDS Friday afternoons with classes for 4-7 and 8-12 year olds. Cuesta Canyon Park, 2400 Loomis St, SLO. Contact Jonathan Gabriel at 540-0528 or omnipranaslo@gmail.com FREE/LOW COST COUNSELING The Child Development Resource Center offers play therapy for children and individual and family therapy for children, teens and adults. Families with Medi-Cal can access counseling for free or low cost and those with no insurance have a lowcost sliding scale. Locations in SLO and Los Osos. Call 544-0801 or online at www. childrensresource.org. FREE SUPPORT PROGRAM Through this free program, California residents can receive 12 weekly sessions of professional counseling for families and caregivers who have a child or adult with special needs. Must be referred by your TCRC service coordinator. And have
access to the internet. Topics include but are not limited to: sibling behavior issues, stress, burnout, couple therapy, financial pressures. Available in Spanish as well as English. USC Telehealth. Call (866) 740-6502 STRIDE’S FRIDAY CLUB A free weekly program put on in conjunction with the SLO Special Olympics. Every Friday for three hours, between 10 am and 1 pm (in one hour sessions by age group), kinesiology students interact with individuals with special needs and partake in different forms of sport and exercise together. It takes place at our Recreation Center, in the main gym. Every Friday 10-11 am (elementary -high school students) 11-12 pm (young adults)12-1 pm (older adults) Cal Poly’s Recreation Center Main Gym For more information, email kinesiology@ calpoly.edu or Michael Lara at mlara@sosc.org
SAN LUIS OBISPO COUNTY
San Luis Obispo County
UNITED CEREBRAL PALSY (UCP) UCP’s Family and Youth Services are dedicated to providing full access for children and adults with disabilities in the community. Please contact UCP for more information about Kids & Teens Club, Teen Camp, Adult Camp, Leisure Club, and Community Integration Programs. 543-7102 TRANSITIONS MENTAL HEALTH ASSOCIATION (TMHA) There are wellness centers in SLO, Arroyo Grande and Atascadero offering a calendar full of classes and support groups. Contact 503-0350. www.t-mha.org Are you interested in learning about mental health? TMHA and NAMI offer Familyto-family classes starting in September in Arroyo Grande and SLO. Registration required. Free. Call John Klimala at 5503889. www.nami.org/f2f CALL FOR ARTISTS Did you know that the Regional Center displays art made by its clients on the walls of the hallway? If you know of a talented individual that would enjoy this opportunity, contact Marianne at TCRC. 543-2833
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. Winter 2016 | TriLine | 13
WHAT AUTISM IS AND IS NOT: IMPLICATIONS FOR PHARMACOTHERAPY by James O’Hanlon, Ph.D., Psychopharmacologist The diagnosis of autism or more generally, of an autism spectrum disorder (ASD), is based upon matching behavioral symptoms, or phenotype, to a set of criteria established by experts. The diagnosis says nothing about the etiology (cause) of the disorder. It says nothing about anatomical or molecular abnormalities associated with it. And it says nothing about the pathophysiological processes that mediate behavior. Yet the rational application of drugs to alleviate symptoms of autism depends, not upon behavior, but upon supposed pathophysiology. More than 30 different, readily identifiable and relatively simple genetic mutations produce an autistic phenotype. Fragile X Syndrome, caused by the inactivation of a single gene, is a good example. When a unitary genetic deficit is known, it is possible in theory and sometimes in fact to correct the deficit with a single drug. Yet altogether, autistic phenotypes attributable to identifiable causes constitute no more than 15% of all cases. The phenotype in this minority is called “secondary autism.” It is debatable whether this should be called autism of any sort. Certainly it has not the same biological basis as that causing autism the vast majority of individuals with the diagnosis. The majority are said to suffer from “idiopathic autism,” which literally means autism of unknown causation. Actually, we are not so ignorant as the name implies. It has long been known that idiopathic autism is a multigenic and polygenic disorder; multigenic in the sense that a set of interacting genetic mutations is involved and polygenic in the sense that the set varies among individuals with the disorder. Over the last decade, an enormous effort has been mounted to identify the mutations that increase susceptibility to autism. The work is still in progress but even now, its results are revolutionizing our concept of the disorder. According to the latest count1, 71 spontaneously occurring (i.e., not inherited) mutations have been identified as starting points for autism, 6 involving either deleted or duplicated sections of chromosomes containing 1-45 genes apiece and 65 involving inactivating defects in single genes. Afflicted individuals can have 14 | TriLine | Winter 2016
one or more of these mutations and the number and type of affected genes affect the severity and type of their disorders. All of the mutations are associated with core symptoms of ASDs – social disability and restricted, stereotyped interests and behaviors. But only certain mutations cause associated disorders, like epilepsy. Similarly, some mutations cause intellectual disability and others do not. This research has provided clues for the 4-to-1 predominance of males over females with autism. The same mutations occur in both genders but females present more at the same time. The interpretation is that females are somehow protected from developing autism until the mutational burden overcomes their defenses. None of this belies the well-established role of environmental factors in the etiology of autism. Most authorities believe that environmental factors can trigger and intensify autistic symptoms but only in genetically vulnerable individuals. Idiopathic autism is not a single biological entity: it has a variable etiology leading to different structural and physiological abnormalities in subsets of the afflicted population. The primary implication is that no single pharmacological intervention will be effective in all, or even the majority of cases. Until differential biomarkers are known for the various subsets of individuals with autism, pharmacotherapy must proceed on the basis of rational trial and error. Though the identification of abnormal genes associated with autism is a promising development, it presently is of little help for guiding therapy. Most susceptibility genes so far identified have widespread effects on multiple neurotransmission systems and therefore do not indicate specific targets for drugs. More useful information has come from postmortem studies of the autistic brain that identify deficiencies in particular systems or a disturbance affecting neurotransmission in general. Various abnormalities have been found in systems that separately utilize acetylcholine, serotonin, gammaaminobutyric acid (GABA), glutamate and oxytocin as transmitters. Drugs acting on each of these systems have been used
with some success in clinical trials. Of greater therapeutic relevance was the discovery of signs of oxidative stress and neuroinflammation in a large proportion of individuals with autism. These related phenomena appear to be the most consistent pathophysiology of autism but their genetic basis is unknown. That uncertainty has not troubled investigators who repeatedly confirmed the modest beneficial effects of antioxidants or antiinflammatory drugs in controlled clinical trials with autistic subjects. The latest trial2 was with sulforaphane, a natural substance possessing both antioxidant and anti-inflammatory properties. This time the results were impressive. Sulforaphane substantially improved social interaction and verbal communication, while decreasing abnormal behavior, in about half of the participants. The others did not improve, again demonstrating the heterogeneity of autism. Development of drugs for treating the symptoms of autism has undergone a radical change over the last decade. Previously, drugs approved for other indications, such as schizophrenia or ADHD, were the only ones tested in trials with autistic subjects. If they improved behavior in any respect, the manufacturers petitioned for and sometimes won an additional FDA approval for autism. Now, with a better idea of what autism is and is not, greater efforts are being made to develop drugs that specifically target pathophysiology revealed by basic research. The consequence is expected to be safer and more effective pharmacotherapy for autism.
Now, with a better idea of what autism is and is not, greater efforts are being made to develop drugs that specifically target pathophysiology revealed by basic research. Sanders SJ, et al. Insights into Autism Spectrum Disorder: Genomic Architecture and Biology from 71 Risk Loci. Neuron 2015; 87: 1215-1233 2 Singh K, et al. Sulforaphane Treatment of Autism Spectrum Disorder (ASD). Proceedings of the National Academy of Sciences 2014; 111: 15550 -15556 1
My Life Inside Peter Stoner’s chronicle of his early life in an institution. Additional excerpts will be featured in future issues of the TriLine. By Peter A. Stoner My New Address When I was just 6 years old I was moved to a large institutional setting. I was there for 14 years, 5 months, and 19 days, but who was counting? If this sounds like a prison term, that’s exactly how it often felt. At first, I was as confused as a 6-year-old could be: one day I was living happily at home with my parents and brother, the next day they were moving to a far-off place called the Philippines and I was moving to a strange place with strange people. I felt terribly abandoned. I could not fathom why my family was leaving for the Philippines, wherever that was. And when I noticed that some of the other residents did not appear to have CP like me, I wondered why my brother wasn’t living here too. The whole thing was so totally scary and unfair and I didn’t know how to express myself except to cry. The day after my mother left, I cried for six hours straight. In the week to follow, I was to be introduced to how strange and not-so-wonderful some of my fellow residents were. I will never forget sitting in my wheelchair at a dining table when some kind of disruption ensued. As I glanced up from my plate, the face of another resident flashed in front of me. He was screaming wildly, and if it weren’t for the fact that his working hand was restrained, he would have been swinging wildly too. As soon as our eyes connected he spat directly into my face. Shocked and upset, I had never experienced anything like this. The administrator of this surreal new place was a curious little man. He wanted us residents to call him Pop or Poppa, but I didn’t want to know the guy on a firstname basis, and always addressed him as “Mister.” The only time you ever really saw him was when you violated the rules of the house. He was the sole administrator throughout my 14-year stay, and he became the face of everything negative about institutional life. During this man’s early years in the field,
he was thought of as a visionary in the field of care for “the handicapped.” As such, he became administrator of my new home, which claimed to provide state-of-the-art institutional care for kids with cerebral palsy. Many years later, when residents sought independence by expressing their increasing desire to move away from institutional living, he considered it a personal affront. I’m sure the administrator never understood the Independent Living Movement, which came alive in the late 60’s and early 70’s. As a result of his limited vision, many people gave their entire lives to the institution, who with the right training and encouragement could have lived much more fully and independently as members of the community. In the later years, the pressures of living in this environment led me to smoking pot. And I wasn’t alone. At the tender age of 6, I was a talker. I probably said anything that came into my head, as many kids do at that age. During my first month in my new home I grew attached to a staff lady. One day, I was sitting happily chatting with her, secure in the knowledge that I had found a friend, when she abruptly told me in very serious tones to be quiet. It wasn’t an out and out rejection, but it was a clear warning not to get too close and I didn’t know how to react. Maybe I was looking for someone to replace my mother. We residents had few friends in the outside world, so we often considered the staff at the institution our friends. We never knew from one week to another, and indeed from day to day, whether our friends would be working there anymore, with the high turnover rate. I was deeply hurt many times over by people quitting or getting fired. One happy exception to this was Lela Hardy. It was my good fortune to know such a great lady. One or two years after I arrived in Santa Barbara, she came to the institution on a Saturday and ended up staying in my life until I left in 1971.
Peter using left foot to write
Lela came to visit every Saturday at precisely three o’clock. I still remember waiting breathlessly for her VW Bug to come zooming down the hill. On these visits she would either read to me or take down letters to my family. After I got my own typewriter I relied on her secretarial skills a lot less, but she always continued to read. Sometimes we’d go out to dinner, to a play, or to a classical music concert. On my birthday every year we’d go to a drive-in called the Blue Onion, and we continued until they went out of business in the early 60’s. After that, we started going to some place called McDonald’s, but the hamburgers were never as tasty. We even spent a couple of Thanksgivings at her small house on Foothill Road, where she popped in some frozen turkey dinners. Lela was a member of the Christian Science Church and very politically liberal, but she never pushed her faith or political beliefs. She was a class act. Years later in 1974, after I had moved to Anaheim, my father came to visit. We took a road trip back up the coast to Santa Barbara to visit Lela. Later I wished we hadn’t gone. She barely knew who I was, and couldn’t decide if my father was who he claimed to be. Whether it was Alzheimer’s or just old age, I never knew. My father summed that day up by saying, “How sad, how very sad.” It was a long, silent drive back to Orange County. The above excerpt is from Author Peter Stoner’s “My Life Inside”. With the aide of a Dynavox communication device, Peter has delivered public presentations locally, as well as testified on behalf of disability rights. Peter resides in San Luis Obispo where he writes independently by typing with his left foot. Winter 2016 | TriLine | 15
NONPROFIT ORG. U.S. Postage PAID Santa Barbara CA Permit No. 359
Tri-Counties Regional Center 520 E. Montecito Street Santa Barbara, CA 93103
Greetings from the President by Rachel Huff, President, TCADD Board of Directors communications with legislators Julia Brownley and Cheri Bustos along with the courage to pursue his goal of a quality life for his daughter, Brianna, led to outstanding results.
Service providers are struggling to stay afloat and our population is growing in numbers, transitioning from teen to adulthood, and aging, along with more young children being diagnosed with autism. This type of positive persisPlans to close Developmental tence is a good example for us Together, We can Work to Centers such as Sonoma will all. Brad tells us to use our story Improve the Future require community services for a call to action or “ask” of At TCRC, we are a committed funding. The Purchase of team from our families, to each legislators, repeatedly sending Services Budget must support messages. Building relationand every staff person along allocation of funding for each ships through personal contact, with our Board of Directors. person’s Individual Program e-mail, phone calls and social We will continue to be here to Plan (IPP) or Individualized media is this parent’s approach. ensure the safety and support Family Services Plan (IFSP). for each office and every person We need you to meet with The articles in this TriLine we serve. YOU and your familegislators, attend local meetings inspire me to be an advocate lies are the reason we are here. or rallies and write letters! You for change. In addition to can decide what level of involveLet’s get Involved! Brad and Brianna’s story, I was As our TCRC families, you have ment works for you. Advocacy moved by the community can be a daily commitment to the biggest impact on what advocacy promoted by the happens next. Only by working supporting a family member’s Cal Poly engineering initiative, together can we get the fund- journey as well as working for PolyHouse. ing needed for our community. system change. My take away from this TriLine Results of the Budget Process, Parents who take action and the individuals and families is: Hear concerns, make your the Time is NOW who live the stories on these case and take action! This is not an action item for pages, along with others, the future, we have to get Successful Advocacy Efforts deserve our support. As the started today! Given the results In this issue we highlighted Lanterman Act approaches a of the budgeting process for Brad Pitzele, who launched a 50th anniversary in 2016, we writing campaign to California Fiscal Year 2015/2016, we must must step-up our efforts to turn to continued efforts for legislators for support of the ensure that individuals with Affordable Care Act. This work reform. The regional centers developmental disabilities manage operations budgets led to his communications are served well. As a Board that are insufficient, especially with Congress for support member, I am compelled every related to the “core staffing of the development of the day to ensure that this is my formula” that sets unrealistic ABLE (Achieving a Better Life goal. Will you join me? ranges for staff compensation. Experience) Act. Pitzele’s
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 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 Rachel Huff President
Diane Figueroa Vice President
Robyn Adkins Secretary
Tim Farrar, PAC Representative Sharon Francis VAC Representative Chris Correa Shirley Dove Ada Gonzales Michael Kaszycki Howard Kraus Ralph Morales Susan Rasmussen Robin Rosso Ryan Wilkinson
2016 Upcoming Board Meetings Feb 5.........................6:00 pm (SB) March 5....................9:00 am (SB) May 14................. 10:00 am (SM) June 4.....................10:00 am (OX) July 9.........................10:00 am (SV) 2016 Upcoming Town Hall Meetings Jan 13............... San Luis Obispo March 9................ Santa Barbara May 25.......................... Simi Valley July 13........................ Santa Maria Sept 21................................ Oxnard Oct 12......................... Atascadero