TriLine Newsletter - Spring 2016 - English

A Publication of Tri-Counties Regional Center | Spring 2016

Celebrating 50 Years of Community Services Cover Story 01 Celebrating 50 Years of Community Services

Photo Credit: Isaac Hernandez

Featured Articles 03 Telemedicine – Casting a Wider “Net” to Serve Healthcare Needs 03 Join our Photo / Video Contest!

06 Jon Seyster: Riding with Heart 14 What is Self-Determination?

15 Freedom Fighter Remembering Peter Stoner Recurring Topics 02 From the Executive Director 09 Calendar of Events 16 Greetings from the President Board member Shirley Dove holds a personal photo of Ronald Reagan

Blueprint for a Quality Life

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.

Shirley Dove, parent, advocate, and TCADD Board member, stood in the room as Governor Ronald Reagan signed Assembly Bill 225, “It was so exciting, I thought oh my God, my daughter’s going to have a life!” In 1969, families across the entire state of California could develop a community plan for their child through a system of regional centers. Two pilot community service agencies in San Francisco and Los Angeles, in 1966, through Assembly Bill 691, had demonstrated the success of community services.

Shirley tells her poignant story of seeking services for her daughter. Living in Missouri with her daughter, Vera, husband and two sons, where programming was scarce, Shirley searched for services for Vera. When Vera was five, her pediatrician suggested that she be institutionalized.

A friend in California contacted Shirley, “Move to California, classes are starting for Vera.” Special education had been enacted in California. Shirley’s husband made continued on page 4

Santa Barbara | Ventura |

San Luis Obispo |

www.tri-counties.org

From the Executive Director

by Omar Noorzad, Ph.D. Celebrating 50 Years of Community Services This fifty-year milestone of community services is certainly a cause for celebration.

Funding for community living such as day activities, residential services, respite for families, early intervention for toddlers, and supports for school and work based on an individual program plan is a promise made by the State of California to persons with developmental disabilities not available in any other state in the U.S. The groundbreaking legislation of several bills, including the Lanterman Act, has transformed the lives of those we serve.

We are so fortunate to have this system of regional centers and community based services in place, thanks to the pioneering work of dedicated parents and visionary legislators.

More to Celebrate - Restored Funding through Legislative Special Session!

Governor Brown recently signed legislation for restoration of nearly $500 million for developmental services dollars lost during the recession, in two special legislative session bills.

SBX2 2 reforms a Managed Care Organization (MCO) tax through the securing of over 1 billion dollars in federal funding.

ABX2 1 provides almost $500 million for the developmental disabilities services system, including funding for intermediate care facility/developmentally disabled and skilled nursing facilities. The developmental disabilities service system increase takes effect this July and the intermediate care / skilled nursing facility increase this August.

The Lanterman Coalition, comprised of 19 organizations includes Association of Regional Center Agencies (ARCA), service provider associations, advocacy groups and the Service Employees International Union (SEIU). ABX2 1 is a direct result of the Coalition’s steadfast and tireless work on behalf of the developmental services system.

The targeted funding includes: • 7.5% Increases for service provider staff and regional center staff salary and/or benefits • 2.5% increase for administrative costs for service providers and regional centers 2 | TriLine | Spring 2016

• 5% rate increases for supportive and independent living services, in and out of home respite services, transportation services and intermediate care facilities for developmentally disabled • 11% rate increase for supported employment services • $11M to address disparities in services and to develop linguistically and culturally appropriate services • A program will be established to increase paid internships for individuals with developmental disabilities as well as incentive payments to supported employment providers who place individuals in jobs.

Advocacy The signing of ABX2 1 is great news for our system, confirming that sustained, unified and informed influence of our legislature does work. Advocacy activities must be ongoing to protect all aspects of funding for services and supports.

The Budget: FY 2016/2017 Highlights The Governor’s State Budget Proposal released January 7, 2016 included proposed increases and new funding in addition to the funding approved through ABX2 1 as a result of the special session. Consideration of the Governor’s FY 2016/20178 budget proposal will go through the regular annual budget process.

Proposed Increases Funding of $62.4 million would support the minimum wage increase, mandated by AB 10, affecting community care facilities, day program, habilitation, respite, supported living and transportation services.

A proposed $54.2 million would support overtime payments by service providers. A $257.6 million increase (5.8%) is proposed for the Purchase of Services (POS) budget for caseload and utilization growth; the Operations (OPS) budget would be funded with $20.7 million for caseload growth.

Proposed New Funding Residential service providers would be reimbursed a higher rate for 4-bed Alternative Residential Model homes (ARM) with an increase of $46 million. An increase of $15 million would support service

providers to transition from traditional day programs and sheltered workshops to community integrated day services as required by new changes from the federal government. Program Evaluator regional center positions would also be funded.

Funding of $17 million would support 200 Full Time Equivalent (FTE) Service Coordinator positions towards a goal of 650 positions to comply with federally mandated caseload ratios.

Self-Determination Services CMS (Centers for Medicare and Medicaid Services) provided feedback to DDS for the Home and Community Based Services (HCBS) Waiver application that was resubmitted on September 29, 2015. DDS submitted a revised application based on requests received on December 11, 2015 and awaits clarification. See page 14.

POS Expenditure Presentation Community presentations regarding 2014/2015 POS expenditures were held in all three counties this spring. Three additional meetings are planned to include Santa Paula, Lompoc and Paso Robles. TCRC, Family Resource Center, Central Coast State Council on Developmental Disabilities and Clients Rights Advocates representatives interacted with attendees. Dates and times can be found on the TCRC website.

Security Measures at TCRC In the wake of the tragic incident at Inland Regional Center, TCRC is implementing additional facility security measures in all offices with input from local police while ensuring that the TCRC offices continue to be appropriately accessible.

The Year Ahead We have experienced monumental success of our advocacy efforts with the passing of ABX2 1. Thank you to each and every person who wrote letters, made phone calls, visited legislators and traveled to Sacramento to testify in budget hearings. Your efforts made a profound difference! Let’s use our knowledge and understanding gained from this outcome to continue to inform and influence our legislators about the right choices to sustain funding for our system.

Telemedicine – Casting a Wider “Net” to Serve Healthcare Needs

by Patricia Forgey

Helping TCRC Families Not possible to leave the house today?

Traveling to meet a counselor not an option? “Telemedicine” or in this case, telecounseling, may be a new resource.

Counselors can be viewed on your computer screen from the comfort and privacy of your own home.

The USC TeleHealth program is an online professional counseling clinic supported through USC’s School of Social Work and provided free to family members of persons served by a Regional Center in California. Counselors hold a Masters degree in Social Work and are supervised by licensed staff. Families are served typically for up to 12 counseling sessions.

The service is accessed with a newer computer (less than 4 years old), Internet connection, web camera, and microphone. TCRC’s Family Resource Centers’ equipment and space are available if families do not have the technology needed.

“We recognize the tremendous stress often experienced when caring for a family member with special needs. We help families and caretakers develop coping skills.” says Mary Ann Fratterole, Director of Operations for USC Tele-Counseling. Mary Ann developed the services in 2012 when contacted by a woman seeking counseling. This mother of a child with special needs and wife of man with

chronic illness was at the end of her rope.

Mary Ann arranged for a tele-counseling session and the program was launched.

There is no waiting list. The service can handle up to 500 clients at any time, with fifty clinicians. Mary Ann emphasizes, “Many of these social workers are entering this work as a second career. This is a mature and diverse group of people of different ethnicities. Clinicians are selected based on years of experience in social work and expertise demonstrated in training sessions, before becoming a provider in the USC Tele-counseling program.”

Telemedicine Services Over the last forty years, the delivery of healthcare services through telemedicine has grown into a broad range of services, as cost-savings and patient convenience have been recognized. Information and patient consultation can be provided in a variety of ways such as consultation via two-way video between patient and doctor, transmission of images for a doctor’s review or monitoring of a patient’s vital signs in a hospital unit From the remote observation of individuals in hospital beds from a nursing station, to robots cruising the halls of an assisted living center distributing medication, technology is supporting rapid development of the delivery of a range of telemedicine. Physician and professional

Woman in telemedicne session with her doctor

services can include dentists, optometrist, ophthalmologist, podiatrists, psychologists, marriage and family therapists as is the case for the USC TeleHealth program, clinical social workers. Patients who live in remote areas can easily confer with a physician, without the burden of travel.

The telehealth provider can complete an assessment, develop a treatment plan or perform a check-up. A physician can interview a patient and provide an updated prescription. Certain aspects of a physical examination of the patient may be completed by an assistant or reported by the patient during a telemedicine visit with the physician.

The system is in place for TCRC families who wish to access telecounseling services through the USC TeleHealth Center. If you would like to learn more about these services, call the Center at 866-740-6502.

A knowledgeable person will provide information about the program and how to access the services. There is no obligation to access the services and there is no charge for the counseling.

Celebrating the 50th Anniversary of Lanterman, we asked “What Does the Lanterman Act Mean to You? Thank you for joining our photo contest!

All photos displayed at www.tri-counties.org To watch the video, go to YouTube and search “TCRC Celebrates the Lanterman Act”

Spring 2016 | TriLine | 3

Celebrating 50 Years of Community Services

by Patricia Forgey | Photos courtesy of Lanterman Regional Center a trip to California and called his wife,” I’ve got a job, quit your job, sell the house, pack up the kids – we are moving to California!”

Vera started school in Oxnard at the age of six. With the eventual enactment of Assembly Bill 225, Vera had an Individual Program Plan (IPP) supporting a community life. At 62 years of age, Vera lives in her own home with supported living services; she has many friends, loves to socialize in the community and has a jewelry business!

Frank Lanterman speaks to Ronald Reagan

“The Lanterman Act (AB 225) was the greatest piece of legislation for social services of our time,” stated Fred Robinson, retired CEO, The Arc of Ventura, “No other state can say – if you have a developmental disability, you are entitled to an IPP and social services. You are entitled to a blueprint for a quality life.”

Fred is a system veteran. He also worked in the Pacific State Hospital (later Lanterman Developmental Center) and as a social worker and manager for TCRC. Fred reflects “The conditions in the old state hospitals were awful – with hundreds and hundreds of people - lined up cot after cot.”

Frank Lanterman

“The original charge for use of the half million dollars allocated (through AB 691) for the two pilot regional center programs in 1966 was to get people off of the waiting list for developmental centers. But once they got started (providing community services) the momentum was there and there was no stopping it!”

Art Bolton

Denny Amundson

Fred Robinson

4 | TriLine | Spring 2016

Fred also recalls, “The first two regional centers’ directors would meet with families in local public health offices; social services were accessed through what was then known as Crippled Children Services. So, it became known, you don’t have to go to a state hospital to get services.”

Denny Amundson, first Director of the North LA Regional Center and Director of Developmental Services, 1991–1997, described Assembly Bill 225 as “A beautiful piece of legislation – an all encompassing promise.” Amundson had evaluated the fiscal impact of the original two pilot regional centers in his position at the Department of Finance in 1964 and recommended that Governor Pat Brown fund

Assembly Bill 691. Amundson comments “For the first year of operation of the two regional centers, 500 people were served with less than $1M – they did a good job of this.”

Cause for Celebration!

Assembly Bill 691, enacted in 1966, is our reason to celebrate 50 years of community services. This legislation was the result of the campaigning of parents and community outrage around the conditions in hospital institutions. Despite the conditions, thousands of children and adults were on waiting lists for admission to these institutions. When the two pilot regional centers successfully provided community services, the next steps through AB 225 to provide services across California set a different standard for the quality of the lives of children and adults with developmental disabilities.

The Route to Change Arthur (Art) Bolton authored Assembly Bill 691 that launched the two pilot regional centers, drafted language for Assembly Bill 225, The Lanterman Mental Retardation Services Act, and was also responsible for the introductory language of Assembly Bill 846 (the Lanterman Developmental Disabilities Services Act). This bill expanded community services to all individuals with developmental disabilities of cerebral palsy, epilepsy, autism, and the fifth category, other neurologically handicapping conditions similar to mental retardation.

In 1963, Bolton was working in community planning in Sacramento when he was asked to evaluated the conditions in the institutions. The San Francisco Chronicle had published an expose’ series about the conditions, resulting in public outrage. As a result of his review of a sheltered workshop’s application for United Way funding, Bolton was identified as a go-to person to evaluate conditions in the institutions. He became an aide to Frank Lanterman to do this work.

After reviewing the conditions in the institutions, Bolton began the discussion about a state-wide system of community services.

Art adds “We turned to the expertise of the families and they were terrific.” Based

Snapshot of the Legislation on the input of the parents, a system was designed to be implemented through AB 225. There was intense opposition from many. Law enforcement, parents with children in state hospitals for many years did not want to lose the service and state hospital employees objected.

Denny Amundson comments “The pilot regional centers were doing their job, the parents loved it and it was cheaper than running state institutions.” In his role as a financial analyst, Amundson recommended that state-wide community services be considered. Amundson’s outlook was not 100% fiscal; he was aware of the horrible conditions. Amundson remembers with clarity and compassion, “People were committed by the courts – sometimes against their will. (People) had to wear a uniform, sleep in barracks. Staff opened personal mail and everyone had monitored phone calls. (There was more) legal deprivation than for convicted criminals.”

Who was Frank Lanterman?

Frank Lanterman served in the California State Assembly, from 1950-1978. His legislative work covered environmental concerns, transportation, special education, mental health and support for individuals with developmental disabilities.

Art Bolton remembers Frank Lanterman as a “remarkable man, a musician before a legislator, a very likable, charming man who worked very well with staff.”

Denny Amundson became Chief of Staff to Frank Lanterman, leaving the Department of Finance, to provide legislative analysis support. “It was the most important work of my life, working for Frank Lanterman. He was unbelievably uplifting. Nobody else but Frank Lanterman could have got AB 225 passed – even the governor was opposed to it!”

“Frank lived in the Sacramento Hotel; there was a corner in the bar permanently reserved for him! He would confer with parents in the evenings, asking what they wanted and changes in the AB 225 language would be created in those conversations. The next day, he would tell me, ‘I’ve got more amendments’.”

Along with his expertise and passion for getting things done, Lanterman was well respected and loved. When he showed up for a legislative session in attire different than his regular brown suit that he wore daily, the close of a legislative session was finished with “We close this session in memory of Frank Lanterman’s brown suit.”

Where would we be witout the Lanterman Act? It seems an obvious question, and… it is very important to continue to remember the quality of lives of people with developmental disabilities before 1966 and then throughout the years of developing community services after the laws were put in place.

The mandates of Assembly Bills 691, 225 and 846 have supported the lives of all people who receive services. The Lanterman Act is a part of their life-long safety net. Knowing and understanding the history of entitlement is an important part of protecting it. “Without the Lanterman Act, everyone would be in state hospitals,” says Shirley Dove. “I toured Camarillo; there were even high functioning people, they were dressed the same, had the same haircuts. Somebody with bad behavior was confined to a solitary room. The staff at the state hospital gave it their best. But there were no guidelines and no goals for the lives of people – they were just institutionalized.”

Ongoing Advocacy The developmental services system’s history was built with the work and advocacy of parents, legislative leaders, and dedicated professionals. Californians benefit from the unique legislation created in the 1960s and 1970s. Children and adults with developmental disabilities and their families and friends, the service providers and all professionals who have chosen to support people with disabilities understand the importance of maintaining community services. The need for advocacy continues. Collaborating in our delivery of key messages to decision makers and partnering to create strategies to support the future is critical to the journey ahead. This year we celebrate 50 years of community services, and together we will safeguard a quality life for people with disabilities in the years to come.

The start and growth of the system that now supports over a quarter million people in California looks like this:

1964

A subcommittee to the Legislature was formed to research the care and services for people with intellectual impairments. Governor Pat Brown asked Assembly Member Frank Lanterman to lead the work.

1966

Assembly Bill 691, developed

by Assemblymen Frank Lanterman and Jerome Waldie, was implemented. This launched two pilot regional centers, San Francisco Aid to Retarded Citizens and Children’s Hospital of Los Angeles.

Children with intellectual disability were diagnosed, and counseling and services were provided to them and their families.

These two regional centers were the beginning of service provision in the community! Prior to this groundbreaking legislation, institutional placement for children born with developmental disabilities was the recommended plan for life.

1969

Governor Ronald Reagan signed the Lanterman Mental Retardation Services Act bill into law, Assembly Bill 225.

The work of parent advocates, along with the success of Lanterman’s and Waldie’s Assembly Bill 691, created communitybased services across California. Frank Lanterman envisioned that one thousand people would be served per center.

1977

The Lanterman Developmental Disabilities Act, Assembly Bill 846, was enacted adding services for individuals with diagnoses of intellectual disability, cerebral palsy, epilepsy, autism and other neurologically handicapping conditions similar to intellectual disability.

1985

The California Supreme Court ruled that the IPP process ensures an individual receives services as an entitlement.

Spring 2016 | TriLine | 5

Jon Seyster: Riding with Heart

by Nancy Black & Heather Wennergren training, specialized custom-built bicycles and recumbent bikes. Jon participated in several local rides on that heavy bike, and a few longer ones before he was outfitted with a custom three-wheeled hand-cycle that Ride 2 Recovery designed and built, named to represent Jon, “Cour d’Or” (“Heart of Gold”).

The Ride 2 Recovery has benefitted him, “not just by helping others, but also my cardiovascular and upper respiratory system has improved so much and my speech has gotten clearer, louder and stronger. I got new waterproof hearing aids too, which provided a hearing experience that I have not had before.”

Jon on his three-wheeled hand cycle

Jon Seyster (http://jonseyster.com), 32, of Simi Valley, has discovered his passion.

Drawing great strength from his spirituality, he lives with cerebral palsy and hearing loss, “but I don’t allow that to stop me from living an amazing life,” as he wrote on the flyer announcing his book, Jon’s Peaceful Thoughts. A one-man powerhouse, he’s a graphic designer, photographer, actor, author and designer of his own jewelry line, who cycles all over the country riding with and supporting injured veterans.

Jon is all about empowering and inspiring other people. His book, Jon’s Peaceful Thoughts, shares his photography, designs and writings, collected over the last 17 years. He dedicated this book to the US Armed Forces to thank them for their bravery and sacrifices. He chose to donate a portion of the proceeds from the book to Ride 2 Recovery, who make a difference in the lives of wounded veterans with cycling rehabilitation.

Jon used a photo and poem he created for a postcard, Helping Others, that he personally delivered to veterans at Walter Reed Army Medical Center in Washington DC, and at other events. It reads: “Thank you for helping all of us in America to have our freedoms. I appreciate the sacrifices you have made. You are America’s special heroes. All my thanks and best wishes for a good recovery.”

6 | TriLine | Spring 2016

Jon and his mother Sue attended a Ride 2 Recovery event at the Santa Monica Veterans Administration in 2008, and delivered these Helping Others cards. Sue has raised Jon alone, since a divorce when he was a teen. They’re exceptionally close, and it’s clear that this feeds her spirit.

John Wordin, founder and president of Ride 2 Recovery, invited him to participate in the following year’s ride. He had participated in power wheelchair soccer before, but never cycled before, as this would be a major challenge.

“I told him,” Jon smiled, “‘remember, Dude, I’m going to college. But, after I graduate, I’ll come and ride with you guys. I promise.’”

“On the Texas Challenge in 2013, I was going from San Antonio to Fort Worth, and I met Tim Brown, who lost three of his limbs; his left arm was reattached. They customized a hand-cycle with a glove for him that fits to the hand-pedal and Tim is able to cycle independently.”

“Public figures come out and ride,” he commented, “and there’s great community support; children at schools…we do school assemblies. It’s like one big family.

Being on the bike for them is therapy.”

Jon fits perfectly into the Ride 2 Recovery family, Sue explained, “They treat him like one of them. The girls all kiss him on the forehead. Between Tim and Jon…they always have all the girls around. These veterans really are grateful.”

After earning two consecutive AA degrees at Moorpark Community College (graphic design and photography) in May 2011, Jon started training on a therapy handcycle. This therapy bike is intended to ride around a parking lot; not hundreds of miles. Two push bars were added to this 75-pound, 7-gear bike so that others could help push Jon if needed.

Moved by the memory of vets being welcomed back home with such gratitude, Jon shared, “They don’t want to talk about the past. What they do want to talk about is what’s coming up next, about the future.”

Ride 2 Recovery (https://ride2recovery.com) is a nonprofit with the motto “Saving Lives

by Restoring Hope and Purpose,” that organizes bike rides as long as 600 miles for disabled vets, providing them with

He considers the Ride 2 Recovery 9/11 Challenge “an experience of a lifetime.”

Jon reminisced, “When we did that 9/11 challenge… it was seven days, 580 miles.

I completed about half of it. When we got

“You can see how healing it is,” Sue remembered, “to have communities acknowledge and thank them. You see the tears.”

to the Pentagon, everyone cried. How could you not?”

“He only missed one day,” Sue clarified, “the day they climbed the summit in Pennsylvania. It was raining. His bike was too heavy to push; he rode along and cheered the other riders from the van.” When Jon’s heart is in something, his enthusiasm is contagious.

The emotion of this ride, on the anniversary of 9/11, with survivors and veterans present, many that went to war right after that, felt enormous, before the grateful crowds.

Sue recalls, “When the group arrived at the Pentagon on their bikes, the main mechanic came running back through the crowd to us, ‘Jon Seyster, we need you!’ So the guys pushed him on his bike through the crowd, yelling, ‘make a hole!’”

“A hole did open, and standing in the center was US Marine General James Amos. He was waiting for me! There were my fellow riders giving me a standing ovation. I felt so honored. I told him, ‘Thank you, sir, for serving our country. I’m here to ride with our brave men and women to say thank you for serving and for their sacrifices so I can be free.’”

Jon grinned, “The others told me that I can’t give up that Challenger coin; it’s a general’s coin.” He was told that the coins follow the rank of their givers.

Recently, Jon’s acting career has been keeping him busy. Jon has been in commercials, Netflix shows, MTV series, a web series and a short film. His profile is on IMDB.com (http://www.imdb.com/name/ nm7404404/ ) and he’s a proud member of the Screen Actors Guild.

“In 2014 it started,” Jon explained, “as I needed some money coming in. A friend of mine is a producer; I said, ‘I’d like to try this. How do I get in?’ She had me work for three days on her show as a special needs actor and I became eligible for Union status. So that’s how I got started with that.

I have an agent as well who specializes in diversity and disabled performers on TV and movies. I got several background jobs in commercials and TV shows. I did my first co-starring role last year, called ‘Con Man’; it’s a web series with Alan Tudyk and Nathan Fillion. I’m part of the LA Conservatory. The American Film Institute reached out looking for someone in a wheelchair to play a lead role in a student film. I auditioned and got the lead as Henry. Because of that, I have more auditions and jobs coming up.”

He’s very clear about why he pursues acting. “I want to inspire people with disabilities… to let them know that there are no limits, anything is possible. Don’t let anything put you down; just keep going, even if it’s hard, just keep trying.”

Jon with General Amos

Sue continued, “The General shook his hand, and gave him a Challenger coin; the coin is passed palm-to-palm to someone special. It challenges the recipient that ‘when I see you next, you’d better have your coin with you or you have to buy the next beer.’ It’s an honor to receive.”

Jonathon Seyster

old.’” The memory moves him to tears.

Sue takes up the story, “I said, ‘think about Kenai and how important she is, and how she’s touched your life.’ He started crying. He told the director about her as he wept; the director said, ‘roll camera and keep it rolling’.”

“It took nine takes,” Jon goes on, “and it was so exhausting, but thinking about Kenai helped me to blubber, and do a great job.

They were so impressed.”

Jon would like to someday start a nonprofit organization to help support his mission to educate and empower others.

“I would like to share this: no matter what you do in life, stay true to yourself, and deliver whatever message that you’ve learned and that you believe could help someone change their life for the better.

I want to inspire people to see that life is important; don’t take it for granted. Take one step at a time, one moment at a time.

Enjoy it and embrace it.”

What’s next for this powerhouse? Along with continuing his business and participating in upcoming Ride2Recovery events, he’s co-organizing a one-day Ride 2 Recovery Project Hero Honor Ride(with free registration for injured veterans and first responders, public welcome).

“The short student film I just did, called Space, is 17 minutes, and I had to put in so many different emotions. I had to play a frustrated disabled person; I had to cry, laugh, do all kinds of things.”

“I have a story to tell you,” he leaned closer.

“On that film project, the one thing that was difficult: I had to cry a lot, really blubber. At the audition, I was able to do it, and then after that I had a harder time. My mom reminded me, ‘Your friend Kenai is dying of cancer; she’s only fourteen years Jon with his Mom

Spring 2016 | TriLine | 7

SANTA BARBARA COUNTY

Events

Santa Barbara County

ALPHA RESOURCE CENTER FAMILY RESOURCE CENTER email: info@alphasb.org www.alphasb.org

Santa Maria Office (805) 347-2775 Santa Barbara Office (877) 414-6227 or (805) 683-2145 Lompoc Office (805) 453-7739 Alpha Resource Center offers a wide variety of services and supports to encompass the needs of individuals with disabilities of all ages and at all stages of life.

Children & Family Services ~ Assists parents of children with special needs to gain the knowledge and skills to enable their children to be all they can be.

Parent-to-parent and family support, parent-professional collaboration, resource meetings and workshops, information & referral, transition, future planning, and much more!

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

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

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

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 breaking barriers between able bodied individuals and those with disabilities. $3 fee, $1 refreshments. DJ & Live Sound, Chris Benedict (805) 729-1512 or djofability@gmail.com 8 | TriLine | Spring 2016

FUTURE PLANNING WORKSHOP June 2, 2016 at Alpha Resource Center, SB. This workshop will focus on: Effective use of public assistance; Personal and fiscal management; Estate Planning; Special Needs Trusts; Conservatorships and alternatives. REGISTRATION IS REQUIRED by May 27. Call to register or for more information: Alpha Resource Center Jennifer 805.683.2145 or jgriffin@alphasb.org 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.

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.

ALPHA PARENT GROUP Parent Support Groups meet regularly at Alpha Resource Connections library at TCRC in Santa Maria and Santa Barbara and at the Family Service Agency Dorothy

Jackson Family Resource Center in Lompoc Contact 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.

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

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 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 INCLUSIVE YOGA FOR ALL ABILITIES Tuesdays from 4:30 - 5:30 pm Thursdays from 11:00 am - 12:00 pm SB Parks and recreation at the Carrillo Rec Center. Call Julie to Register 805-564-5421.

SHAKE RATTLE AND ROLL DANCE CLASSES Ongoing on Thursdays, 4:30 - 5:30 pm at the Carrillo Recreation Center, Santa Barbara. Drop in and join a session when you can - $10. per class. info@sbSNAP.org SB MOPS = MOTHERS OF PRE-SCHOOLERS Every other Thursday during the school year from 9am to 11:15am – Shoreline Community Church SB. Keep track of current MOPS activities or learn more about our group! http://sbmops.weebly.com CHALLENGER FOOTBALL - FLAG FOOTBALL (*ADAPTIVE) March - May, 10 – 11:30 am at Foothill

Santa Barbara County 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 Teams in Goleta, Carpinteria, Ventura, Lompoc and Nipomo. Registration forms at www.GoChallengers.org. Organized By: Central Coast Challenger Volunteers info@ GoChallengers.org, 805-681-9165 MONSTER BALL October 23, 2016 from 2pm to 4pm, Girsh Park, Goleta. Kids and teens ages 5 -highschool, with physical, developmental and/or intellectual challenges can join in this “spirited” game. Little League now has a senior challenger division for anyone ages 15 and up. Any age adults now invited to play with us. Paint your face and Join us for a treat!

BASKETBALL SKILLS CLINIC AT PAGE YOUTH CENTER Oct 2 - Oct 23, 2016, Girsh Park Goleta For kids and teens with special needs, indoor and outdoor courts. Six Tuesdays, every Spring and Fall from 3:45 - 5 pm.

Details at www.sbSNAP.org.

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

rugby, tennis, swimming, racquetball, climbing wall and MORE! Camp provides recreational and competitive opportunities for all the athletes. Contact Rene Van Hoorn at 805-569-8999 x82102 TEEN EXTREME SOCIAL CLUB Meets weekly for outings & activities Contact Amy Buesker at (805) 683-2145.

SANTA BARBARA COUNTY

ARF READ TO A DOG Tuesday, 3:30pm SB Public Library Saturday, 10-11 am Carpinteria Library Curl up and read to a four-legged friend!

Children in grades K-6 are welcome to drop in to the Central Library for a fun, 20-minute reading session with an ARF! therapy dog! Space is available on a firstcome, first-serve basis... Please come early and sign up at the Children’s Desk. All children ages 8 and younger must be accompanied by a parent or guardian. ARF!’s library program is free. www.allforanimals.org, (805) 682-3160 BEACH DAY AT LEADBETTER BEACH May 14 & 15 and August 20 & 21, 2016 8:30 am - 1:00 pm: Leadbetter Beach. Surfing, bodyboarding, kayaking experiences and more for adventurous children with special needs. Volunteer life guards and experienced volunteers support your child in the water; adapted equipment for those with limited mobility too. Register RIGHT away for this popular program. http://www.bestdayfoundation.org/locations/santa-barbara-county-ca

INDEPENDENT LIVING SKILLS BOOT CAMP July 18 - Aug 19, 2016, 10am to 3pm, Mon - Fri, for young people ages 14-22 with developmental disabilities. Weeklong sessions, $250, register for 1 week or more! santabarbaraca.gov/register, 805-564-5421.

JUNIOR WHEELCHAIR SPORTS DAY CAMP

by Cottage Rehabilitation Hospital July 11, 2016 to July 15, 2016, UCSB Recreation Center, SB. For youth athletes ages 6-19 with physical disabilities who use a wheelchair or could use a wheelchair to participate in sports such as basketball, Spring 2016 | TriLine | 9

VENTURA COUNTY

Ventura County RAINBOW CONNECTION FAMILY RESOURCE CENTER email: rainbow@tri-counties.org Oxnard Office: 2401 East Gonzales Road, #100, Oxnard, CA 93036 Monday through Friday 9:00am to 5:00pm (805) 485-9643 Main Phone (800) 332-3679 Toll Free (805) 485-9892 Spanish Line Simi Valley Office: 2635 Park Center Dr., Suite A, Simi Valley, CA 93065 Monday through Friday 9:00am to 5:00pm (805)823-2325 Main Phone (805) 485-9892 Spanish Line Website: http://rainbowconnectionfrc.weebly.com Facebook: http://www.facebook.com/RainbowConnectionFRC. Rainbow Connection provides support, information, training and activities for families. Here is a list of on-going support groups. We encourage you to attend a support group at least once. You will be surprised at how much it will help you and how much you can help others. As there might not always be a support group available for a specific diagnosis, we try to provide a parent match upon request. Please contact us to register or for our “What’s Happening at Rainbow?” email group.

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

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

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

DOWN SYNDROME SUPPORT GROUP (SPANISH) *NEW DAY Meets first Tuesday of the month 6:30pm – 8pm in Oxnard. Families have open discussions on issues related to raising children with Down syndrome.

10 | TriLine | Spring 2016

SUPPORT FOR ALL SPECIAL NEEDS *NEW GROUP* TRANSITION AT AGE 3 DISCUSSION GROUP (ENGLISH & SPANISH) Meets monthly in Oxnard & Simi Valley from 10am-11:30am. Please call for current dates.

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. *NOW FORMING - SIMI PARENT SUPPORT GROUP (ENGLISH & SPANISH) Meets 2nd Thursday of the month 7pm – 8:30pm at Tri-Counties Regional Center in Simi. This is a new group, and it is open to parents at all stages of life and dealing with all sorts of diagnosis. The discussion is centered on the children’s disability, how it affects the family, the resources the family currently uses and resources that the family might not already know about. A Rainbow representative facilitates the group. Registration required. *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. *NEW DAY* ADULTHOOD (22YRS THRU LIFE, TCRC PERSON SERVED): THE JOURNEY CONTINUES “SPECIAL FAMILY NETWORK” (ENGLISH) Meets 4th Thursday 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. *NEW DAY*SPECIAL FAMILIES SUPPORT GROUP (SPANISH) Meets the first Tuesday of the month

6:30pm – 8pm in Oxnard. Families meet to share the experiences & resources.

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.

Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs.

INFORMATIONAL THE IEP BASICS (ENGLISH OR SPANISH) *Individual Appointments can be scheduled upon request.

Special Education basic IEP information will be shared by a Rainbow parent. Knowing your rights and responsibilities can help you be a more effective advocate for your child.

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

HEALTH CARE NOTEBOOKS Do you have a hard time keeping track of your health care information? Create your own personal notebook with a Rainbow staff person and/or other parents; learn more about the transition process & get suggestions that might help with guidance from one of our staff and/or other parents.

Individual For Persons Served, call for appt.

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

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

OTHER COMMUNITY SUPPORT GROUPS Contact the following groups directly.

ACTIVITIES SOCIAL TIME FOR ADULTS RECEIVING SERVICES FROM TCRC (BILINGUAL) Meets 2nd Sunday of the month 11am – 12:30pm at Teague Park in Santa Paula.

Come, bring a friend or just come meet new people, for conversation, playing games or for refreshments and some fresh air.

THE AKTION CLUB OF SAN BUENAVENTURA Sponsored by the Kiwanis and The Arc. Club membership offers opportunities to form friendships and develop leadership skills through volunteer work and projects. Meets at 5:30 p.m., the first and third Thursdays of the month at Pizza Man Dan’s on Santa Clara Street, Downtown Ventura. There is no support or transportation provided. Free. For further information call Patty Schulz at 805-218-7807 or http:// www.cnhaktion.org/about.html BRANDON’S BUDDIES A free play date for children of all abilities.

1st Sat of the month 11am – 1pm, at Brandon’s Village, 25801 Thousand Oaks Blvd. in Calabasas. Go to www.kenproject.com to view calendar.

CENTER4SPECIALNEEDS Offers various types of supports for

Ventura County

families, that have children ages 2-16 with developmental disabilities Organizes Mom’s & Dad’s Night Out events and has a huge calendar of support groups on their website at http://center4specialneeds.org FUN CLUB THROUGH THE CITY OF OXNARD SPECIAL POPULATIONS PROGRAM This program is designed to provide social and recreational opportunities for persons 5 years of age and older with disabilities.

Activities offered include: Challenger Sports, Fun Club, Day at the Park, Arts & Jewelry Classes, Swim Lessons, Community Gardening and Braille Institute. For information go to http://www.oxnardrec. org/17/1/1027/ or call 805 385-8019.

CONEJO RECREATION AND PARK DISTRICT’S THERAPEUTIC RECREATION IN THOUSAND OAKS Children and adults from all over the County attend activities. It is a model program throughout the State. For info. (805) 381-2739 or http://www.crpd.org/parkfac/ therapeuticrecreation/default.asp FRIENDSHIP CIRCLE Designed to foster relationships between community teenagers and children.

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

Agoura Hills (818) 865-2233, www.FriendshipCircleCa.org SPECIAL OLYMPICS VENTURA COUNTY Offers training and competition opportunities in 10 different year-round sports at over 20 different training sites throughout Ventura County. The program not only provides people with intellectual disabilities with physical fitness and athletic competition, but also social interaction and community involvement. For info. (805) 654-7717 or http://www.sosc.org/ventura AUTISM SUPPORT AUTISM SPECTRUM AND RELATED DISORDERS SUPPORT GROUP Group meets 5:30-7:00 the 3rd Monday of each month at the Camarillo Health Care District. Free and open to all. Contact Jeff or call 805-388-1952, ext. 100 to RSVP.

AUTISM SOCIETY VENTURA COUNTY (ASVC) ASVC holds Community Talk Nights usually on the third Friday of the month from 7-9pm in which guest speakers present on topics important to parents, and parents are able to mingle, socialize and network.

Free 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 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 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

(Continued) Spring 2016 | TriLine | 11

Ventura County Thank You Jean Farley!

Jean Farley Retires as Senior Deputy Public Defender in Ventura County

SAN LUIS OBISPO COUNTY

Ms. Farley has a long history of advocacy and expert knowledge of people with developmental disabilities and/or mental health issues. She’s advocated for people in the legal system, helped to assure they get fair trials and are treated with respect.

We appreciate Ms. Farley’s many years of service to our community. Jean Farley will be missed.

EXCEPTIONAL FAMILY MEMBER NETWORK (EFMP) SUPPORT GROUP Meets 2nd Wednesday of the month at Seabee Museum. Support group for active and retired military families with children with special needs. For information please *NEW Contact: Scott Council, Military Liaison for Special Needs, at (805)982-2646 or scouncil@AFSC.com

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

PAUSE4KIDS INC. – ENGLISH PAUSE4kids provides information, support and services for residents of Ventura County & nearby areas. For more info go to http://pause4kids.org/ or call 805-497-9596.

PAUSE4kids hosts Monthly

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

children’s SSI, Medi-cal or IHSS. Participants offer insight, research & support with navigation through the various issues, paperwork & services involved with disability benefits. Specific topic TBD. Friday, March 25, from 10-11:30 am PHP Library, 3450 Broad St, Suite 111, SLO RSVP to php@ucp-slo.org or 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 & a place for children to play while their parents browse. PHP has a network of experienced staff & parents available for mentoring & support. A reliable source of current information, referrals, & 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 facebook.com/ParentsHelpingParentsSLO/ PHP SPONSORED EVENTS ** For a ll PHP events in Grover Beach, SLO or Atascadero, please RSVP to php@ucpslo.org or call 543-3277.

GET CONNECTED AT PARENTS HELPING PARENTS For parents & their children ages 0-10 years old. Come check out our new resources!

Meet other parents & PHP’s staff at BOTH OUR Atascadero & San Luis Obispo offices one Wednesday a month.

This month PHP wants to share with you an exciting new collaboration- we are excited to now house the library collections of NAMI (National Alliance on Mental Illness) & CCASC (Central Coast Autism Spectrum Center)! Come check out all the fabulous new books we have to loan out!

Wednesday, April 13, & May 11, from 11am12pm at both offices.

San Luis Obispo PHP Library, 3450 Broad St, Suite 111, SLO *staff is bilingual Español/English Atascadero PHP Library, 7305 Morro Rd, Atascadero

SOCIAL SECURITY PARENT SUPPORT GROUP A monthly support group for family members who have questions about their

MAKE & TAKE Does your child receive behavior or speech services? Parents can build materials for

12 | TriLine | Spring 2016

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 & support will be provided by Rebecca O’GormanTrimbath, BCBA. Workshop offered every 3rd Monday. Monday, March 21 from 9-11:30am by appt.PHP 940 Ramona Ave, Suite M, Grover Beach. RSVP required.

LOCAL EVENTS 8TH ANNUAL WALK FOR AUTISM & AWARENESS FAIR I Get your teams ready! Team, individual & vendor sign-ups are available. Sponsors greatly welcome! www.ASCtoWALK.com, (805) 763-1100 April 17, 12 to 3 pm in Mission Plaza SLO. TRYATHLON AT KENNEDY CLUB FITNESS ATASCADERO A special event for people with disabilities (intellectual & physical). Have fun Running/ Walking, Riding a Stationary Bike & Swimming/Wading. Go as far & as fast as you can in 15 minutes per event! Every athlete will be accompanied by a volunteer coach.

Everyone who TRYs will be rewarded! Medals & T-shirts for ALL! Saturday, April 23, 2016. Contact Jamie 6744291, Chris 461-6533, or Becky 461-5284.

READING TO ROVER Caring Canines therapy-trained dogs & handlers will visit the Grover Beach Community Library to work with children who would benefit from practice outside the home or classroom with beginning reading skills. Reading to a dog will promote reading skills while building self-confidence.

We are marketing this to special needs kids in our area first before opening it to the general public. Wednesdays at 3:30p.m.

In English & Spanish Mondays 10:30 am.

Homework Hub Mondays 3-4:30 pm Grover Beach Library (240 N 9th St, GB) SLO LIBRARY SPANISH STORY TIME Monthly Cuentos y Cantos at the downtown SLO Library. The parent leaders are bilingual & have children with special needs.

March 28, April 25, May 23. 5:30-6 pm. Free.

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

Then you are a “Kin Caregiver”. Kinship Center has a monthly support group in Oceano. For more info call 434-2126 Marta ext. 3030 Alex ext. 3031 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 & community members. If interested in participation please call: Matthew Green Ph.D., Director of Workforce Economic Development & Community Programs at Cuesta College at 805 546-3100, ext 2229 or email: mgreen@cuesta.edu ARTS FOR LIVING Music groups in March – San Luis Obispo (Thursdays 4-5 pm) & Atascadero (every other Tuesday 6-7 pm) Glee Club inclusive community choir. Every Wednesday 5:30-6:30 at UCP of SLO. For more information, contact Laura DeLoye at 225-6101 or Ldeloye@ucp-slo.org THE NATIONAL ALLIANCE ON MENTAL ILLNESS (NAMI) A nonprofit, grassroots, self-help, support, & advocacy organization of consumers, families, & friends of people with severe mental illnesses, such as schizophrenia, ma-

jor depression, bipolar disorder, obsessivecompulsive disorder, and anxiety disorders.

NAMI has Family-to-Family and Peer-toPeer support. Call 225-1431 or 550-3889 for more information.

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!

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 low-cost sliding scale. Locations in SLO and Los Osos.

For more information 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 3 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 info, email kinesiology@calpoly. edu or Michael Lara mlara@sosc.org

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

SAN LUIS OBISPO COUNTY

San Luis Obispo County

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 February in Atascadero and SLO. Registration required.

Free. Call John Klimala at 550-3889. 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

Meet the Artist-Noah Erenberg!

Please join us for an opportunity to meet and enjoy local artwork created by internationally recognized outsider artist Noah Erenberg. The self-taught artist, who is on the autism spectrum, has been featured in numerous publications, including The New York Times, and has been exhibiting internationally for more than 20 years.

Show dates: 4/11/2016 until 6/30/2016 Where: Tri-Counties Regional Center-3450 Broad Street-San Luis Obispo, CA Reception date: 4/27/2016 from 4pm until 5pm www.thegoodluckgallery.com/noah-erenberg

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.

Spring 2016 | TriLine | 13

What is Self-Determination?

by Cheryl Wenderoth & Heather Wennergren • Selection Process • Local Volunteer Advisory Committee

What is Self-Determination?

In October of 2013, Governor Brown signed into law SB 468 authorizing the implementation of the Statewide SelfDetermination Program. This program offers a voluntary, alternative to the traditional way of providing regional center services. The Self-Determination Program is intended to provide individuals served by the regional center and their families more freedom, control, and responsibility in choosing services and supports to help them meet the goals listed in their Individual Program Plan. This program will be rolled out over several years. The program will need Federal funding before it can be fully implemented.

The First Three Years For the first three years, the number of participants in the Self-Determination Program is limited to 2,500 individuals throughout the state. TCRC will have 114 individuals or families enrolled in the program during this phase. This includes 16 individuals who are currently in our Self-Determination pilot project plus an additional 98 people that TCRC will add.

After the three year phase-in period, the program will be available to all eligible persons served and families on a voluntary basis with no limit on the number of participants. Once federal approval of matching funds is authorized, the program will be available in every regional center.

Role of the Stakeholder Advisory Group An advisory group to the Department of Developmental Services (DDS) is working to ensure that the enrollment process is fair. Here are some of the topics they have discussed: • Outreach • Pre-enrollment Requirements 14 | TriLine | Spring 2016

Outreach To help spread the word about the Self-Determination Program, DDS, with input from a workgroup, developed an informational video that features some of the people currently in the pilot. This video emphasizes the new opportunities along with increased responsibilities of the program. It is posted on the DDS website at https://www.dds.ca.gov/SDP. Pre-enrollment Requirements Those interested in the Self-Determination Program will be required to attend and participate in an informational/preenrollment meeting covering topics identified by DDS. The meeting will include the: • Principles of self-determination • Role of the financial management services provider • Development of an individual budget.

The DDS Self-Determination workgroup is currently developing training materials to be distributed to all regional centers that will be used during these informational / orientation meetings.

Selection Process Regional centers will forward to DDS the names of those who have participated in an informational/pre-enrollment meeting and are interested in participating in the Self-Determination Program. DDS will then randomly select the participants based on the following demographic factors within each regional center: age, gender, ethnicity and disability diagnosis.

Individuals not initially selected will remain on the interest list for potential future openings. The process for selecting and enrolling participants in the first three years is described in the Self-Determination Enrollment Process which can be found at: http://www.dds.ca.gov/sdp/docs/ selfDeterminationEnrollment.pdf Local Volunteer Advisory Committees The primary responsibility of these committees is to provide oversight of the Self-Determination program at each

regional center. The committees will review the development, implementation and on-going progress of the Self-Determination Program and ensure that the requirements of the law are being met. The committees will also make on-going recommendations for improvements to the program to the regional center and to DDS. TCRC’s Self-Determination Advisory Committee meets on a quarterly basis in Santa Barbara and all meetings are open to the public. The committee includes parents and participants, staff from TCRC, and community service providers.

The co-chairs of this committee are Louise MacKenzie and Michele Carbone, both parents of daughters who have developmental disabilities and have been participants in the Self-Determination pilot since its inception over 15 years ago. Ms. MacKenzie and Ms. Carbone are committed to offering their experience and knowledge of the program as well as continuing to learn about the implementation of the Self-Determination Program when final approval is received

by DDS. Ms. MacKenzie and Ms. Carbone also participate on behalf of TCRC as members of a state-wide Stakeholder Advisory Committee. They will share back to TCRC’s committee the best practices being developed across the state.

ARCA Self-Determination Committee TCRC is actively participating on the SelfDetermination Committee through the Association of Regional Center Agencies (ARCA). This group will provide feedback to DDS around the implementation of the pilot program and obtain input and direction as well on the timing and implementation of the various components of the program.

Self-Determination News Update your preferences on our website (upper right margin) to get email notifications when new information is posted. Click the box next to “Self-Determination”.

Freedom Fighter Peter Anthony (Fialkowski) Stoner died peacefully on February 28, 2016 in San Luis Obispo, after 65 years of living life to the fullest.

Born with cerebral palsy, Peter never allowed disability to diminish his curiosity, thirst for knowledge, love of life, or sense of humor, despite significant physical limitations. Instead, he used his disability to effect social change as a pioneer in the Independent Living movement of the 1970s, and as a disability rights activist from the 1980s forward. He testified before the California State Legislature on numerous occasions, and was instrumental in policy change on behalf of people with disabilities in California.

maintained his sense of humor through it all.”

A charismatic and articulate person, Peter left his mark on everyone he touched, whether through personal interaction or through his writing. His masterwork, My Life Inside, exposes the realities of institutionalization in a memoir of his early life.

This work was a 12-year effort, typed with Peter’s left foot.

Robert Butler was Peter’s caregiver and friend for over 30 years. “We lived an amazing life. We overcame many obstacles together. We did things that at the time were groundbreaking. We were able to overcome those obstacles and be the advocates for much of the change we have today. Peter was an innovator, and I was able to assist him in ensuring that the endeavors were mostly successful, and that his legacy will live on.”

Paul Crafts worked with Peter as his Service Coordinator over ten years. “Peter never really complained,” he recounted.

“He bore his physical challenges with dignity, humor and grace.”

“Peter was always grateful for my work.

I supported his choice to live in his own home, close to his community, his friends.

There he was able to write, to get out, get a meal, or go to the Mission; depending on the staff available. I was grateful for his understanding of a patchwork of supports, a stream of staff and good staff managers.

I always included him in staff hiring and major decisions.”

Paul learned from Peter that with dedication, vigilance, acceptance and trust, a team can support someone in living in their home despite very severe medical conditions. “I think in part that Peter’s personality, his strength, intelligence, and wit made others want to take up the challenge.”

Alice Bailey was Peter’s registered nurse for the last five years. “Peter required 24/7 care,” she shared. “Peter was fiercely independent. He and Robert lived the dream of a person-centered life. Peter led more of a physical life than some might think.

Regardless of the medical challenges, he

Jody Barker was Peter’s friend and fellow advocate. “When I first met Peter, he was President of a group called People First of SLO. Peter was a writer. He said, ‘Just because you meet someone with a disability like yourself, doesn’t mean that you have to like them.’ It gave me food for thought. Peter had many challenges.

Through the effort and the struggles he always had his dignity.”

TCRC staff and service providers went above and beyond to support Peter and Robert in overcoming challenges together.

Peter rallied a great many people who came together to help him realize his goals.

Robert reminisced, “I remember his sense of humor. It could be a serious subject, and Peter would say something uproariously funny. He had this infectious humor that lit up a room. He was clever and unexpected.”

Peter and Robert were trailblazers for both independent and person-centered living.

“We made so much progress through advocacy efforts. I want to ensure that this continues into the future; that young people know that through diligence and hard work, anything is possible.”

Robert is committed to continuing his advocacy for people with disabilities. “It’s ongoing. By meeting with Jody Barker and other advocates, writing and communicating, we will solidify foundations of hope for young people to come. Parents and others will be able to encourage their loved ones, and the memory of this legacy will inspire independence into the decades ahead.”

Peter used his left foot to write

Kristen Lopes is a member of Peter’s church community at the Old Mission in SLO. She visited him weekly for the past several years, and grew to know and love him. “Though I only knew Peter for 15 months, the impact of his friendship will stay with me for life. By the time I met him, he was living a life completely physically dependent on others. But he was not dependent on others emotionally, intellectually or spiritually. In fact, he was a person that the rest of us had a lot to learn from, in those areas. Peter had a presence of joy about him, despite having every excuse to be bitter. He chose to look for the good in his life and to be grateful – a lesson many of us are still begrudgingly trying to learn.

Gratefulness for each day with whatever life presents – even the suffering – is one lasting gift that he modeled for me.”

Patty Moyer Pepper from the SLO Mission adds, “Peter was deeply spiritual and had a profound trust in his faith. He had a strong will to live life despite his disability. He taught us a lot. I notice people with disabilities more now, and remind myself that what I am seeing may be only a small piece of who they are. The spirit is strong, and the intellect can sometimes be hidden. I’ve learned to look into people’s eyes. People emerge if you take the time to connect. Peter taught me this.”

Peter is survived by his brother Mark Stoner of Brownsville, Vermont, by Robert Butler, his devoted friend and caregiver of 30 years, and by the countless friends and caregivers who were privileged to have known and loved him.

A memorial mass for Peter was held at Old Mission San Luis Obispo on Monday, April 11, 2016, at 2pm. Gratitude is offered to the ICU staff of French Hospital.

Special thanks to contributor Carol Lopes.

Spring 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 “milestone” bills - one law supporting the beginning of our system. The second signed at the 50 year anniversary of community services.

This Spring we celebrate two legislative events, one historical and one contemporary. Fifty years ago two pilot regional centers were launched as a result of Assembly Bill 691 being signed by Governor Pat Brown. And this year, on March 1st, Governor Jerry Brown signed ABX2 1, providing almost $300 million in additional funding for the developmental disabilities services system. Join in our celebration by participating in our video/photo/phrase contest.

Share your story about what Lanterman means to you! (See details on page 3.)

California Governors Pat Brown and Jerry Brown, father and son, both signed legislation impacting the quality of life for people with developmental disabilities. One law created access to community services and the second will now provide for long overdue improvement in the financial support required to deliver those services. I see these as

I am so delighted and grateful to celebrate the anniversary of our service delivery system.

One that strives to keep the person at the center of the decision making process. We also congratulate the Lanterman Coalition for a job well done. This win is the result of years of advocacy work of Lanterman Coalition members including ARCA. Our legislators heard our message. Our Board is reaching out to each of our legislators to personally thank them for their support.

It’s time to set aggressive and achievable goals for people to have real jobs - - living wages that support a community life.

New funding will help make this happen.

One of the new bills funds vocational training and competitive, integrated employment. It mentions paid internships along with incentives for supported employment service providers to find job placements for people that last.

And Assembly Bill 104 is being implemented this year. It is linked with the Adult Education Block Grant and AB 86. These bills help fund community colleges and adult schools to enhance post-secondary education for key populations, one of which is adults with disabilities.

ABX2 1 will be enacted this July bringing multiple rate increases and higher compensation for staff. We must remain steadfast in our advocacy to protect funding for the people we serve.

Our messages to the lawmakers, and all decision makers for funding must address all aspects of a quality life for people with developmental disabilities.

Thank you to all who contributed to the advocacy efforts that resulted in the enactment of ABX2 1!

With a growing population and a heightened awareness around the need for funding, we commemorate our recent funding increases, and use this success as a stepping-stone to the next milestone!

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 May 14................. 10:00 am (SM) June 4.....................10:00 am (OX) July 9.........................10:00 am (SV) Sep 9.........................6:00 pm (SB) Oct 8.........................10:00 am (SLO) Nov 4.........................6:00 pm (SB) 2016 Upcoming Town Hall Meetings May 25.......................... Simi Valley July 13........................ Santa Maria Sept 21................................ Oxnard Oct 12......................... Atascadero