TriLine Newsletter - Fall 2009 - English

Trailer Bill Language FAQ TCRC Celebrates 40th

A Publication of Tri-Counties Regional Center | Fall 2009

Cover Story 01 Changes to the Developmental Services System – the New Reality

Featured Articles

04 “Person Centered in All We Do”: The History of Person Centered Thinking at TCRC 04 A History of Partners in Advocacy 05 Measuring Satisfaction 05 David Mulvey Presents at the Gathering, UK 06 Key Moments for TCRC and the Service Delivery System 10 Trailer Bill Language Frequenty Asked Questions (FAQ) 12 Early Start Program Changes, FAQ 13 Prevention Program Overview, FAQ and Eligibility 14 Is Folinic Acid a Cure for Autism?

Continued on page 3

Vision:

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.

Changes to the Developmental Services System – the New Reality

Receiving Services through TCRC On July 28, 2009, Governor Schwarzenegger signed the revised California State Budget for fiscal year 2009-2010 (July 1, 2009 through June 30, 2010). The revision of the budget included broad and deep cuts to health and human services including developmental services and the regional centers, K-12 and higher education, the state prison system, state employees, local government, as well as many other state funded programs and services.

The budget for the Department of Developmental Services (DDS) that includes the regional centers was impacted by a $334 million reduction approved by the Legislature. An additional $50 million reduction occurred when Governor Schwarzenegger utilized his line item veto power at the time of signing of the budget.

Because the Trailer Bill Language (TBL) that implemented the budget reduction contained an urgency clause, the changes were effective immediately as of July 28, 2009 for most of the reductions. The $384 million reduction to the developmental services budget has affected the services received by many persons served by Tri-Counties Regional Center (TCRC) and their families. The changes fall into the categories of General Standards, Early Start-Specific Provisions, Adult and Family Related Provisions and System-Related Provisions. See the Frequently Asked Questions (FAQ) sections of this issue on pages 10 - 13. Also visit the DDS web site (www.dds.ca.gov) for further details.

Santa Barbara | Ventura |

San Luis Obispo |

www.tri-counties.org

From the Executive Director

by Omar Noorzad, Ph.D. the budget passed in July, anticipating the work ahead, we pledged to implement the changes in services and supports with the least impact on the quality of life for persons served by TCRC. We determined to implement the changes in the Trailer Bill Language as intended in the law utilizing a person centered approach. We recognized the gravity of the cuts while at the same time acknowledging that changes were necessary to sustain the entitlement to services under the Lanterman Act. As we are all keenly aware, this regional center along with its partner agencies across the state has faced monumental challenges over the last six months. Early in 2009, the mounting deficit for California held our focus as we watched the budget process be continually delayed. Once the budget was approved and the Trailer Bill Language introduced into law, TCRC staff and leadership were tasked with implementation of the new laws. When

In these challenging times, it is more important than ever to allow our values to guide our actions. I am pleased to share that person centered thinking practices (PCT) have successfully been at the forefront of our minds as implementation decisions have been made. We remind ourselves of PCT when needed and we use PCT tools, not only with those we serve, but with one another. Through this

approach we strive to hear and act on that which best supports the people we serve.

PCT organizational change has deeply permeated our regional center. As a result, we are making the best decisions possible in this environment.

Families, persons served and service providers, as well as TCRC staff and leadership, are concerned about the fiscal impact of the new laws. The savings intended to be generated through the changes in the Trailer Bill Language and other provisions included in the budget bill may be less than initially projected.

This, in combination with recent projected state deficits in the range of $10 to $20 billion for fiscal year 2010-2011, could result in the Governor proposing further cuts to the developmental services budget. The budget proposal is scheduled for release in January 2010. Additional cuts could be proposed to both the current fiscal year

TCRC’s strategic statements and operating procedures in a presentation now seen in all regional offices

2 | TriLine Fall 2009

2009-2010 in the form of mid year cuts and to the budget for next fiscal year, 2010-2011.

TCRC will continue to monitor the situation closely and we will also continue to provide system and state level leadership within the Association of Regional Centers Agencies (ARCA) and the Department of Developmental Services (DDS) on this and other related issues.

As we experience the unfolding of this new reality for our system, TCRC has turned 40! The history of the evolution of TCRC illustrates that the motivation for pursuing a quality life for persons with developmental disabilities that drove the development of the Lanterman Act forty years ago is alive and strong today in spite of the challenges we have faced.

Over the years, at the state and national level, dedicated professionals, families and

all persons with an interest in advocating for services and supports have lobbied, advocated for and worked intensely to secure rights and services for persons served by the regional center system.

In the midst of this harrowing fiscal situation, we celebrate the strength of our history and will continue to utilize our considerable knowledge and expertise in responding to the urgent and challenging issues at hand. Although we cannot change the fiscal environment for our state, we will strive to do all we can to ensure persons with developmental disabilities live fully and safely as active and independent members of their communities.

Warm regards for the New Year ~

As TCRC and all stakeholders weather current budgetary challenges, TCRC also celebrates its 40th anniversary . The building of the agency from grassroots support to the operation today of serving nearly 11,000 people demonstrates the strength and resolve of those involved in supporting individuals with developmental disabilities. Read about the history of TCRC to learn more about each step of the development of this regional center.

Continued from the cover page

Recurring Topics 02 From the Executive Director 06 Calendar of Events 15 TCRC Staff News 16 Greetings from the President

Fall 2009 TriLine | 3

“Person Centered in All We Do”: the History of Person Centered Thinking at TCRC

by Tina Calderaro-Mendoza, PCT Project Coordinator and Heather Wennergren, Media and Training Coordinator So Cal Gathering 2009 Panelists

Helen Sanderson, expert PCT consultant and PCT mentor trainer, wrote extensively on the topic, developing training manuals and forms. She focused on applying person centered principles to team work. Her work and that of the Learning Community laid the groundwork for cultural organizational change on a larger scale.

Over the last decade, TCRC staff and management have steadily shifted agency culture toward person centered thinking (PCT) practices. The PCT approach now plays a major role in planning for individuals with disabilities. It is part of the daily work of TCRC staff and has far reaching effects in the lives of persons served in the tri-counties area.

PCT principles evolved from a similar type of planning, Essential Lifestyle Planning (ELP).

In the late 1980s, Michael Smull and Susan Burke-Harrison developed ELP for use in transitioning individuals with developmental disabilities from institutions to their home communities. They discovered that traditional planning tools were inadequate to identify what was required to determine “who” a person was and their preferences and needs.

With these new planning tools, many people were able to exceed the limitations of their existing labels and reputations and transition into a successful community life.

Defined

This new way of planning has continued to evolve from the contributions of many who applied the ideas and learned from the results. Essential Lifestyle Planning spread across the United States and internationally to Canada, Europe and Australia. In England,

PCT was introduced to TCRC in the 1990s.

In 1999, TCRC developed Universal Service Expectations, a comprehensive set of values and expectations as a person centered approach to quality assurance. This guide was created with input from persons served, their families and service providers. The implementation of such tools marks a shift in agency culture.

By 2005, the use of PCT tools was customary in planning and IPP meetings. TCRC developed programs to train PCT coaches and mentors. The PCT Task Force was established, and with the help of People First of San Luis Obispo, drafted a proposal for people first language within the organization. For example, the term “consumer” is no longer used at TCRC. TCRC staff and leadership have annually attended The Gathering hosted by the Learning Community for Person Centered Practices in Portland, Oregon since 2001. Staff have returned with new ideas for planning, training, collaborating and serving persons with developmental disabilities.

As a recipient of a generous grant from the Weingart Foundation in 2007, TCRC is able to further expand organizational capacity

for PCT practices. The objectives of the grant are being managed by Tina Calderaro-Menedoza, PCT Project Coordinator; this position is funded by the grant.

Outcomes of the expansion of the work include: - Creating a sustainable, cost-effective training infrastructure through collaboration with service provider partners.

- Development of a publication to be shared with the larger community of those eager to learn about implementing such change in their own organizations or groups.

- implementation of a model of PCT coaching support. This is being met through the development of the “Communities of Practice”, a regularly scheduled training series that provides an opportunity to share learning and to practice PCT tools and techniques.

- Partnering with the University of California Santa Barbara in an evaluation project designed to learn of the impact of PCT practices on families.

-Collaborating with Eastern Los Angeles Regional Center to host the Southern California Gathering for Person Centered Practices in 2008 and 2009.

PCT practices have supported the effective implemenation of the Trailer Bill Language enacted into law in July, 2009. The history of the growth and development of PCT practices at TCRC lets us know that, especially in these times, we will rely on this learning to ensure that individuals continue to have access to basic assurances.

Person Centered Thinking is a set of ideas, skills & strategies to assist individuals who use services to achieve greater control and influence over their lives leading to positive community participation and value.

Tina Calderaro-Mendoza

A History of Partners in Advocacy

by Gina Gheno, Assistant Clients’ Rights Advocate TCRC and Disability Rights California (formerly Protection & Advocacy, Inc.) have worked together for over fifteen years. TCRC was one of several leaders in the regional center system to seek legal services from an independent advocacy organization for individuals served by the regional center. In 1993, TCRC entered into an agreement with Disability Rights California to provide these services. Jeanne Molineaux was hired as the first full-time 4 | TriLine Fall 2009

attorney and advocate. At the time there were only two other regional centers with similar agreements. In 1998, legislation was passed requiring regional centers to contract with a Clients’ Rights Advocate employed by an independent provider. The Department of Developmental Services conducted bidding for the contract and ultimately awarded it to Protection & Advocacy, Inc. The Office of Clients’ Rights Advocacy (OCRA) was established to perform

the advocacy services. Ms. Molineaux then led the newly established service as the Director of OCRA. Katherine Mottarella was hired as an OCRA Clients’ Rights Advocate for persons served by TCRC. Now a wellestablished service, TCRC’s OCRA office has become one of the most well utilized in the state. The partnership between OCRA and TCRC demonstrates TCRC’s commitment to ensuring advocating for a person centered approach to decision making.

Celebrating 40 Years of Service Measuring Satisfaction: 10 Years of Collaboration

by Ami Sullivan, Director, Kinetic Flow Corporation

to medical needs. Over the past decade, Kinetic Flow has gathered the opinions of nearly 10,000 people, with a strong baseline of data established in 2002. Since that time, Kinetic Flow has observed TCRC’s achievement of significant improvements on all thirty-seven measures or metrics of performance. Last year, respondents to the 2008 services and support survey rated every metric between Good and Excellent.

administrations over the last two years have indicated the positive effect of person centered thinking.

TCRC is a team of professionals committed to supporting people to achieve the best outcomes possible. TCRC has taken a Through the survey process, TCRC provides leading position in California amongst its partner regional centers and internationally an opportunity for individuals with developmental disabilities and their families as a mid-size non profit organization in to rate the regional center on a wide range utilizing person centered best practices to get to mission and vision based strategic of topics – from their service coordinator and operational goals. Results of survey communications and information needs

The steadfast improvement of results for satisfaction with services and supports has been rewarding to report. In these times of regional centers implementing new laws and facing continued challenges, we know that TCRC will use PCT strategies to continue to strive to get to the optimal satisfaction for all persons served. Happy 40th Anniversary TCRC!

Since 1999, Kinetic Flow has assisted TCRC in collecting information from adults and families of children served about their satisfaction with services and supports provided by TCRC. The two organizations have partnered on the annual Services and Supports Satisfaction Survey as well as the first Autism Survey administered to TCRC families in 2008. Before regional centers were involved in the administration of satisfaction surveys, TCRC participated in a pilot study managed by DDS. This began the regular process of collecting feedback by TCRC.

TCRC has used the input from the administration of annual surveys to monitor its efforts. Service delivery systems are never perfect - - improvements can always be made. They have been made and continue to be made.

HSA (Helen Sanderson Associates) Brings David Mulvey to the Gathering, UK

by Heather Wennergren, Media & Training Coordinator David Mulvey, TCRC Service Coordinator, recently presented at the Learning Community Gathering for Person Centered Thinking (PCT) in the United Kingdom.

Invited by Helen Sanderson, expert consultant in the area of PCT, David shared planning and meeting tools along wth ideas to support PCT practices. He presented a template for one-page-profiles and a selection of tools to create a comprehensive plan. He encouraged the use of internet resources to create planning spaces that may be shared with a person’s circle of support.

with developmental disabilities, seniors requiring care, children in foster care and individuals with mental illness. The Learning Community intends to expand this work to Eastern Europe and India. Collaborative work in the area of PCT is influencing people around the world.

David Mulvey

helensandersonassociates.co.uk www.learningcommunity.us

Person Centered Thinking practices are being used in the UK to support persons The Gathering, UK

Fall 2009 TriLine | 5

Celebrating 40 Years of Service

Early Stakeholders

on State Street First TCRC office rbara Ba a nt in Sa

vene TCRC and Work, Inc. Con

Key Moments for TCRC and the Service Delivery System 1967 First Steering Committee convenes for guidance on establishing a local regional center. Tri-Counties Association for the Mentally Retarded (TCAMR) is formed as a sponsoring agency.

1969 The first contract with the State goes into effect. TCRC opens its doors with a nine month budget of $150,000 and staff of ten. An open house is held at Headquarters, Work Inc., 324 State Street in Santa Barbara.

1970 Robert Carrel MD is appointed Medical Director.

1971 Lanterman Mental Retardation Service Act goes into effect. The TCRC Ventura County office opens in Camarillo.

6 | TriLine Fall 2009

1972 TCRC opens a San Luis Obispo office.

Regional Centers across California are providing services to 7,500 individuals and families. Few remain on State Hospital waiting lists. Over 11,000 people now reside in these hospitals.

1973 AB 846 mandates that Regional Centers also serve those with diagnoses of cerebral palsy, epilepsy, autism and other conditions closely related to mental retardation.

1975 Congress passes the Education for All Handicapped Children Act, mandating free, appropriate education in the least restrictive environment.

1976 The Lanterman Act is amended to establish the right to treatment and

habilitation services for persons with developmental disabilities. The final regional center is established bringing the total to twenty-one.

1977 The Articles of Incorporation are amended to change the name TCAMR to TCADD (Tri-Counties Association for Developmental Disabilities).

1978 The organizational structure of the Department of Health changes and the Department of Developmental Services (DDS) is created.

1979 The Association of Regional Center Agencies (ARCA) is formed.

1980 DDS merges the Continuing Care Services Branch (CCSB) of the Department

Leadership Council 2000

Dr. Robert Carrel, Fir st

of Health with the regional centers, transferring responsibility of coordinating services for those in residential placement to the regional centers. An office is opened in Thousand Oaks.

1995 TCRC joins CalPERS, an agency that manages pension and health benefits for California public employees, retirees, and their families.

1986 The Education for All Handicapped Children Act is amended to include provisions for development of an Individualized Family Service Plan (IFSP) for families of infants and toddlers with disabilities.

1996 Closure of Camarillo State Developmental Center. TCRC assumes operation of the Foster Grandparent / Senior Companion program.

1991 TCRC is selected to participate in a Supported Living pilot project.

1992 SB 1383 amends the Lanterman Act, updating philosophy and promoting choice.

1993 The state of California passes legislation to implement Early Start. TCRC budget reaches 35.8 million.

1997 TCRC initiates strategic planning through a collaborative process with a variety of stakeholders.

1999 TCRC and Area Board 9 participate in Self Determination Pilot Project. TCRC initiates the first effort to measure satisfaction through a survey conducted by J.D. Power and Associates.

TCRC Executive Direc

tor

Cultural Competency, Performance Excellence and Organizational Accountability.

2007 TCRC develops the 2007-2009 Strategic and Performance Plan with assumptions of person centered thinking, transparency of information, inclusiveness and alignment with DDS performance measures.

2008 Tri-Counties Community Housing Corporation (TCCHC) is formed to increase housing options for persons served by TCRC. The TCRC budget reaches 198.3 million.

2009 TCRC has a compassionate and well trained staff who provide services to over 10,000 through six offices in the tri-county area.

2004 TCRC implements the 2004-2006 Strategic and Performance Plan with guiding principles of Person Centered Planning, Fall 2009 TriLine | 7

San Luis Obispo County calendarSanofLuisevents 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 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.phpslo.org PHP SCHOLARSHIP PROGRAM: June 2009 – May 2010 Use your scholarship to cover the cost of registration for one of the out of town or local trainings you see below!

Attending a specialized conference or training can help further parenting skills, knowledge and confidence when raising a child with special needs. With prior approval, up to $400 of conference registration fees may be reimbursed to a family of a child with a developmental disability who currently receives services from Tri-Counties Regional Center. Call or email to request an application form.

Contact: Parents Helping Parents, 543.3277 or php@ucp-slo.org NEW FRCN AUTISM WEBSITE Parents Helping Parents invites you to explore a new informational website on autism developed by the Family Resource Center Network of California. The resources on the website were chosen with input from families and professionals across the state. Check out the site at http://frcna.org/asdrp/.

PHP SPONSORED EVENTS: SEMI-ANNUAL GATHERING: PARENTS OF CHILDREN WITH DOWN SYNDROME MEET AND CONNECT WITH OTHER FAMILIES Parents Helping Parents invites parents of children 0-10 years old with Down Syndrome.

Thursday, December 10, 2009, 10:00-11:30 a.m.

San Luis Obispo Contact: RSVP to Parents Helping Parents, 543.3277 GET CONNECTED. GET ORGANIZED. PHP is hosting a parent get together to organize their child’s records.

Bring your child’s IFSP’s, IEP’s medical records, assessments and samples of your child’s work. PHP will provide the binder and the organizational tools to help you keep important records for future reference. Reservations are required.

Thursday, January 14, 2010, 10:00-11:30 a.m.

Atascadero Contact: Parents Helping Parents, 543.3277 CREATIVE HOUSING OPTIONS SERIES Beginning in January, PHP will be presenting a series of monthly programs to bring you the information you need to provide quality housing for your adult children with developmental disabilities. The Creative Housing Options series was developed from parent input to the surveys taken after the PHP Creative Housing Options Program in September. Please phone us if you would like to be placed on the interest list.

UCP KIDS CLUB FOR 6 – 12 YEAR OLDS & UCP TEEN CLUB FOR 13 – 17 YEAR OLDS Community recreation activities and socialization opportunities for kids and teens with special needs, including transportation and supervision.

Saturday, November 21, 2009, 1:00-4:00 p.m.: Avila Valley Barn Saturday, December 12, 2009, 1:00-4:00 p.m.: Christmas Party at Meadow Park in SLO Contact: Tessa, 543.7102 or youthservices@ucp-slo.org UCP COMMUNITY INTERACTION PROGRAM: TOURS FOR ADULTS Saturday, January 16, 2010 – Monday, January 18, 2010: Universal Studios Hollywood Cost: $500 Saturday, February 13, 2010 – Monday, February 15, 2010: Circle Bar B Guest

8 | TriLine Fall 2009

Ranch Cost: $500 Contact: Bethanie, 543.2039 or bethanie@ucp-slo.org UCP LEISURE CLUB LOCAL OUTINGS & ACTIVITIES FOR ADULTS Saturday afternoon activities and outings for adults with special needs.

Saturday, December 19, 2009, 1:00 - 4:00 p.m.: Christmas Party at The Graduate Contact: Bethanie, 543.2039 or bethanie@ucp-slo.org AYSO VIP SOCCER The VIP (Very Important Player) soccer program is looking for players. The VIP program is a league for special needs children ages 4 years and up.

Paso Robles Contact: Erin Lawrence, 305-1581 or blissfullybuzy@yahoo.com CENTRAL COAST AUTISM SPECTRUM DISORDERS SUPPORT GROUPS: CENTRAL COUNTY AUTISM SUPPORT GROUP 3rd Friday of every other month (even-numbered months), 7:00 – 9:00 p.m.

No meeting in December.

San Luis Obispo Contact: Sandra Price, 805.550.6630 or www.autismspectrumcenter.com NORTH COUNTY AUTISM SPECTRUM SUPPORT GROUP 3rd Friday of every other month (odd-numbered months), 7:00 - 9:00 p.m.

November 20, 2009 No meeting in December.

Paso Robles Contact: Becky, 471.1354 or nocosupport@autismspectrumcenter.com SOUTH COUNTY AUTISM SUPPORT GROUP 3rd Wednesday of each month, 7:00 – 8:30 p.m.

Grover Beach Contact: Leslie Barton, 904.9212 ENCOURAGEMENT/SUPPORT GROUP For parents with children of special needs. The group’s vision is to accept, encourage, and strengthen parents for the life-long journey of caring for a child with special needs.

3rd Tuesday of each month, 6:30 – 8:30 p.m.

Arroyo Grande Contact: Scott and Liz Rice, 481.6843 FAMILY SUPPORT GROUP Mondays, 9:30 a.m.

For families of children with special behavioral & mental health needs.

Contact: SLO & North County Transitions Mental Health: 458.2596 or mhughes@t-mha.org Contact: Coastal & South County Transitions Mental Health: 458.6388 or jgarza@t-mha.org SAN LUIS OBISPO COUNTY SPECIAL OLYMPICS TRAINING Including: Aquatics, Power Soccer (Motorized Wheelchair), Golf, Gymnastics, Bocce, Track & Field.

Contact: 544.6444 SOCIAL ACTIVITIES For parents and young adult children ages 18 – 35 with Asperger’s, HFA, or PDD-NOS. Contact: Victoria or Greg, 460.9389

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.

Ventura County calendar of events RAINBOW MOMS CONNECTING - VENTURA COUNTY (ENGLISH) Meeting dates and times vary. Come and enjoy a night out with other mothers of children with special needs.

NICU CLASS - MY BABY IS IN THE NICU NOW WHAT? (ENGLISH & SPANISH) Information & Resources for families & parents of current & NICU grad’s. First Monday of the month 10:00 -11:00 am in Oxnard.

Rainbow Connection - Family Resource Center email: rainbow@tri-counties.org Oxnard Office 800.332.3679 805.485.9643

Simi Valley Office 800.517.2524 x2325 805.823.2325

Rainbow Connection provides support, information, training and activities for families. Here is a list of on-going support groups: SPECIAL PARENTS VENTURA COUNTY NETWORKING GROUP - ONLINE Special Parents is an online forum where parents of children with special needs can offer and receive support, referrals and information. This networking group provides families with a comfortable and convenient environment for exchanging ideas and resources on everything from medical visits to IEP’s.

Simply activate a free YAHOO user ID and Password account to log into this forum at http://groups.yahoo.com/group/SpecialParentsVenturaCounty.

SIBCLUB First Friday of the month, 6:30 - 8:00 pm. Games, Fun, Activities, for 5 - 14 years old siblings of children with developmental disabilities in Oxnard.

CEREBRAL PALSY SUPPORT GROUP (ENGLISH & SPANISH) Third Monday of the month, 9:30 - 11:00 am. Groups meet separately in English and Spanish. Join other parents to talk about issues related to raising children with cerebral palsy and share resources and information.

NICU SUPPORT GROUP (ENGLISH & SPANISH) Third Wednesday of the month, 6:30 - 8:00 pm, Oxnard Groups meet separately in English & Spanish. Meet other families and share ideas of coping, photos, info, joy and triumphs. Pizza will be served! Families with babies in the NICU and NICU grads welcome.

G-TUBE/J-TUBE/NG-TUBE NETWORKING (ENGLISH & SPANISH) Third Thursday of the month, 6:30 - 8:00 pm Oxnard.

Does your child have a G-tube, J-tube, or NG-tube? Has it been suggested that your child get a tube? We look forward to sharing our stories of frustrations, fears, and successes (large and small).

OTHER COMMUNITY SUPPORT GROUPS: ASAP: ASPERGER’S SUPPORT GROUP FOR ADOLESCENTS PLUS! (ENGLISH) A social support group for teens & young adults with Asperger’s or high functioning Autism. For more info log on to www.vcasap.org AUTISM SPECTRUM DISORDER (ASD) PARENT SUPPORT GROUP (ENGLISH) Meets second Wednesday of the month at Rainbow Connection, 7:00 - 9:00pm, Oxnard. For more information contact Tera Marquez or Karen Bobo at asdparentsupportgroup@gmail.com.

BRANDON’S BUDDIES (ENGLISH) First Saturday of the month, Calabasas. A free play date for children of all abilities. To RSVP call Dina Kaplan 818.222.8118 or brandonsbuddies@pacbell.net.

SPECIAL PARENTS NETWORK (ENGLISH) Third Wednesday of the month, 7:00 - 8:30 pm, Oxnard. Third Thursday of the month, 9:30 - 11:00 am, Simi. Come and join us for a cup of coffee, learn about our resources and talk about issues related to raising children with special needs.

AUTISM SPECTRUM DISORDER (ASD) PARENT SUPPORT GROUP (ENGLISH) **Meets September thru May, Not in the Summer. Second Wednesday of the month at Rainbow Connection, 7:00 - 9:00 pm, Oxnard. For more information contact Tera Marquez or Karen Bobo at asdparentsupportgroup@gmail.com.

DOWN SYNDROME SUPPORT GROUP (ENGLISH & SPANISH) Groups meet separately in English and Spanish. Last Thursday of the month, 7:00 - 8:30 pm, Oxnard. Families have open discussions about raising children with Down syndrome.

SUPPORT GROUP FOR PARENTS OF KIDS WITH AUTISM Last Monday of the month, 6:30 pm. We provide child care. The address is 2697 Lavery Ct., Suite 17 Newbury Park. Contact Leila Silva at 805.480.9039 or 805.341.3089.

AUTISMO SUPPORT GROUP (SPANISH) Third Thursday of the month, 7:00 - 8:30 pm, Oxnard. Families have discussions on issues related to raising children with autism.

SPECIAL PARENTS CAFE Third Saturday of each month. Spanish speakers welcome, Silvia, 805.265.6111.

RAINBOW MOMS CONNECTING - OXNARD (SPANISH) Third Friday of the month, Oxnard. Come and enjoy time with other mothers of children with special needs and have a relaxing time. For more information or to RSVP please call Rainbow.

TEDDY BEAR BRIGADE Third Saturday of the month (except for summer) 1:00-3:00 pm, Thousand Oaks For children 3 -13 years old with special needs and their siblings. It includes stories, sensory themes, crafts and music. Visit www.bearsandcompany.com to register. Parents meet separately for social and networking time.

SANTA CLARA SUPPORT GROUP - Fillmore, Piru Area (SPANISH) Third Monday of the month 5:30 - 7:00 pm. Families meet to share the experiences they’ve had with their children with special needs and learn about resources.

SANTA PAULA SUPPORT GROUP (ENGLISH) Families meet to share experiences they’ve had with their children with special needs and learn about resources. Meets 4th Monday of the month 5:30 - 7:00 pm.

SANTA PAULA SUPPORT GROUP (SPANISH) Families meet to share experiences they’ve had with their children with special needs and learn about resources. Meets 1st Monday of the month 5:30 - 7:00 pm.

EPILEPSY SUPPORT GROUP Meets the third Wednesday of every month from 6:30 - 8:00 pm at E.P. Foster Library in the Topping Room. Speakers, fun, goodies! 805.715.1041 x719.

LET’S GO HIKING First Saturday of the month, Bob Charney & his son Michael, who has Autism, invite other dads & their sons with developmental challenges to go hiking. If you’re interested in participating, call Bob Charney at 818.735.7331 / 818.789.1586 x223 MOM’S NIGHT OUT THOUSAND OAKS (ENGLISH) Third Tuesday of the month. For contact information call Rainbow.

DAD’S NIGHT OUT THOUSAND OAKS (ENGLISH) Fourth Tuesday of the month. For contact information call Rainbow.

VENTURA COUNTY AUTISM SOCIETY (ENGLISH) For more information call Ventura County Autism Society at 805.496.1632.

HAPPY FRIENDS CLUB Alternate Tuesdays, 6:30 - 8:00 pm, Camarillo Support group for adults & teens with mental/physical challenges. Speakers, games, arts & crafts, round table discussions, occasional community outings.

Contact: Jean McGuire 805.816.2319 or email: bobbyjean2@mac.com.

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Santa Barbara County calendar of events 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 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 ~ Family First 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 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 Parent-to-Parent Support Sponsored by Special Needs Network. Meets third Thursday of every month, 9:00 am at Coffee Diem, 505 S. McClelland Street in Santa Maria. Contact: Diana 805.937.8756.

City of Santa Barbara Parks & Recreation Department Check out what they have to offer. Contact: Adapted Programs 805.564.5421.

Family First at alpha resource connections A family resource center and parent network. Provides parent-to-parent and family support, parent-professional collaboration, parent and family workshops, and information and referral.

Contact: North County 805.347.2775/South County 805.683.2145.

Something for the Siblings The Special Needs Network is a new club for the siblings of individuals with disabilities. The club will consist of several fun activities for the siblings and will also be a chance to get away and relax with others who also have siblings with disabilities. Contact: Laura King, 805.344.1403.

Santa Maria Special Education & Support Information Kathy Rowley has started a Yahoo Group for parents of children with special needs who live in Santa Maria. To join go to 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.

P.O.S.E. Parents of Special Education Parent support group meets the third Friday of every month at 9:30 am at the Alpha Resource Connections library at TCRC. The group also fundraises to provide additional educational materials for special education programs in Santa Barbara.

For more information contact Jennifer Griffin, 805.967.0371 (jenagrif@verizon. net) or Cathy Abarca, 805.448.6431 (cat736@aol.com).

TALK ABOUT CURING AUTISM (TACA) Meets 3rd Saturday of the Month, 11:00 am - 1:00 pm at Ocean Hills Ministry Center “The Loft” 821 State Street, Santa Barbara, CA (above Sur La Table in Paseo Nuevo). This is a support group meeting for caretakers for those with special needs. Contact Kathleen_reish@tacanow.org, www.tacanow.org.

SBATA@YAHOOGROUPS.COM Online group for parents of special needs children, email hosseini58@cox.net.

10 | TriLine Fall 2009

frequently asked questions GENERAL QUESTIONS ABOUT CHANGES TO THE SYSTEM Q: Why are changes being made to our system?

A: Our state is in financial turmoil and there no longer is enough money in the state budget to support and fund the programs the way they were previously funded. When the state budget was passed in July, 2009, the Legislature and Governor cut more than $334,000,000 statewide from the regional centers’ budget.

Q: Can stakeholders do anything to change this?

A: The budget has been passed and the changes put into law.

Stakeholders may contact their state representatives to let them know how the cuts have directly impacted their family.

Q: There seem to be a lot of unanswered questions. When will everything be understood and completed?

A: This is an ongoing, evolving process. TCRC staff is working diligently to put processes and procedures in place to meet the requirements of the Trailer Bill. Look for continuing updates in this newsletter and on the TCRC web site.

TEMPORARILY SUSPENDED SERVICES (UNTIL INDIVIDUAL CHOICE BUDGET IS CERTIFIED) Q: Trailer Bill Language requires that TCRC no longer fund certain services. Which services will no longer be funded?

A: TCRC shall suspend funding of the following services: • Camp and associated travel expenses • Social recreation activities (except those vendored as community-based day programs OR when the social recreation activity for adults is part of the plan for ongoing day program and total programming does not exceed 30 hours per week) • Educational services for children ages 3-17 years • Non-medical therapies, including, but not limited to specialized recreation, art, music, dance, horseback riding, and swimming GENERIC RESOURCES The Lanterman Act currently requires regional centers to use generic services when available. If a person served or family member chooses not to access available generic services (e.g. IHSS, Medi-Cal, public school, California Children’s Service), regional centers will not be able to pay for the service.

Q: If a person served or family member is requesting services beyond what the generic resource is willing to provide, can TCRC fund the additional services?

A: Regional centers cannot supplant the generic resource. The person served or family member should contact the responsible funding agency to address the level of service.

Q: When is TCRC referring a child to California Children’s Service?

A: Any child who receives occupational therapy or physical therapy who may qualify for the Medical Therapy Program provided by California Children’s Service.

Q: What are the qualifying conditions for the Medical Therapy Program?

A: The Medical Therapy Program covers services for children who have handicapping conditions, generally due to neurological or musculoskeletal disorders. Examples of qualifying conditions for the Medical Therapy Program provided by California Children’s Service include:

Trailer Bill Language

The categories listed here represent some of the categories of changes. This is not a comprehensive list. ~ Cerebral palsy ~ Spina bifida ~ Muscular dystrophy ~ Rheumatoid arthritis

~ Spinal cord injuries ~ Arthrogryposis ~ Osteogenesis imperfecta ~ Head injuries

There is no financial eligibility requirement for Medical Therapy Program services.

Q: What if a child has an eligible condition for the Medical Therapy Program and the parent does not want their child referred to California Children’s Service? Can TCRC still fund the occupational therapy and physical therapy services?

A: No, if a child has an eligible condition for the Medical Therapy Program and the family delays applying for the program, TCRC cannot continue to pay for the services. Typically, TCRC allows one month to begin the application process and two months to receive a determination from California Children’s Service.

Q: Can TCRC physicians write prescriptions for California Children’s Service?

A: Prescriptions should be written by the child’s primary health care provider. Referrals to California Children’s Service can be made without a doctor’s prescription. In fact, anyone can refer a child to the Medical Therapy Program.

RESPITE PROGRAM Q: If a family has been receiving 25 hours per month and “banking” 120 hours for a summer vacation in one month, can this still be done?

A: No. Families may only use up to 90 hours per quarter of respite (three months).

The new law limits the number of hours of respite that TCRC may fund to 90 hours per quarter of in-home respite and/or 21 days per year of out-of-home respite Exceptions may be granted from the respite limits if it is demonstrated that the intensity of the individual’s care and supervision needs are such that additional respite is necessary to maintain the person in the family home, or if there is an extraordinary event that impacts the family member’s ability to meet the care and supervision needs of the individual.

IN HOME SUPPORTIVE SERVICES (IHSS) Q: If a person served does not want to use IHSS services due to an established relationship with an SLS provider, can that person decide to not apply for IHSS? A: No. Persons must apply for an IHSS award of hours and utilize those hours in coordination with the SLS hours determined by the planning team.

TCRC is prohibited from purchasing supportive services for a person served who meets the criteria to receive, but declines to apply for IHSS benefits.

Persons receiving Supportive Living Services must apply for IHSS within five days of the start of Supportive Living Services. TCRC may fund IHSS type services during the application period.

UNIFORM HOLIDAY SCHEDULE Q: Have the types of services affected by the Uniform Holiday Schedule changed?

A: Yes. There will be 14 required Holidays for the following: ~ Work activity programs ~ Adult development centers ~ Behavior management programs ~ Adaptive skills trainers ~ Activity center ~ Creative arts programs ~ Infant development programs ~ Social recreation programs ~ Socialization training programs ~ Program support groups (day service) ~ Client/parent support behavior intervention training programs ~ Community integration training programs ~ Community activities support services This also includes transportation services associated with the identified programs.

This proposal standardizes the holiday schedule for these programs and increases the total number from 12 to 14 days. Required holidays may vary from year to year. DDS may change the schedule with 60 days notice. There are no provisions in the law or budget for supplemental services to be provided during holiday closures. Exception requests based on health and safety should go through the usual exception process.

Q: What are the holidays?

A: For the 2009-2010 fiscal year, they are: ~ Labor Day (Sept 7, 2009) ~ New Years Day (Jan 1, 2010) ~ Veteran’s Day (Nov 11, 2009) ~ Martin Luther King Day (Jan 18, ~ Thanksgiving Day (Nov 26, 2009) 2010) ~ Day After Thnksgvg. (Nov 27, 2009) ~ President’s Day (Feb 15, 2010) ~ Christmas Eve (Dec 24, 2009) ~ Cesar Chavez (March 31, 2010) ~ Christmas Day (Dec 25, 2009) ~ Easter Observance (April 5, 2010) ~ Christmas Holiday (observed on ~ Independence Day (observed on Dec 28, 2009) July 5, 2010)

Q: What programs in Early Start are affected by the holiday schedule?

A: Infant and behavioral programs.

TRANSPORTATION Q: What changes to transportation have been mandated?

A: The new law limits the transportation that TCRC may provide in the following ways. TCRC shall: • Not fund private specialized transportation services for an adult who can safely access and utilize public transportation when that transportation is available.

• Fund the least expensive transportation modality available.

• Only fund transportation from the person’s residence to the lowest cost vendor that provides the service that meets the person’s needs as set forth in the IFSP/IPP. • Only fund transportation for a minor child living in the family residence if the family provides sufficient written documentation to demonstrate that they are unable to provide transportation for the child.

Q: Can children in Early Start still receive TCRC funded transportation through the Early Start program?

A: Yes, in some cases. Generally speaking, minors living in the family home shall be transported by the family. If a family provides documentation that demonstrates the family is unable to provide transportation for the child, TCRC will fund transportation. Even in those cases transportation will only be authorized to travel to and from required services documented on the child’s IFSP. In addition TCRC will fund the least expensive transportation modality and not necessarily the most convenient.

Fall 2009 TriLine | 11

Trailer Bill Language

frequently asked questions about TBL impact on Early Start The Early Start Program serves infants and toddlers age 0 – 3 with a developmental delay or an Established Risk condition. For children under the age of 2, a developmental delay is defined as a 33% delay in one or more areas of development as compared with same age peers. A child over the age of 2 must demonstrate a delay of 50% in one area of development, or a delay of 33% or more in two areas to qualify for Early Start. Established Risk exists when an infant has a condition of known etiology which has a high probability of resulting in developmental delay.

As a result of the recent changes to the California Early Intervention Services Act, infants and toddlers who were formerly eligible for Early Start under the category of “high risk” are instead eligible for the new Prevention Program. A “high risk” exists when an infant’s genetic, medical, developmental or environmental history is predictive of a substantially greater risk for developmental disability than the general population. Children over the age of two, who do not meet the 50% cut-off for Early Start eligibility, may also be eligible for the new Prevention Program.

NON-REQUIRED SERVICES Beginning October 1, 2009, and with the exception of durable medical equipment, regional centers will not purchase services that are not required under the federal Early Start grant program.

Q: What is a non-required service?

A: Services that are not required under the Federal Early Start grant program.

Non-Required Services include: Child Care; Diapers; Genetic Counseling; Respite; Social Recreation Program; Medical services unrelated to evaluation and diagnosis or that are unnecessary to enable the child to benefit from other early intervention services during the time that the child is receiving the other early intervention services; Hospitalization; Immunizations; Medical devices, equipment and supplies necessary to control or treat a medical condition; Well-baby care; other services that are not for diagnostic or evaluation purposes to determine a child’s developmental status or services that are unnecessary to enable the child to benefit from other early intervention services.

Q: Isn’t respite a required service under Early Start?

A: Only when it enables a parent to participate in another early intervention service (e.g., parent training such as the Hanen Program). It is not to give the family a break as defined for children/ families over the age of three under the Lanterman Act. Q: What if a child currently has respite or another non-required service documented on their IFSP and TCRC is funding that service?

A: Every family that is currently receiving respite (or any other nonrequired service that TCRC is funding) has received a notification letter about the change in the law. The letter indicated the date the service ended.

Q: If a child in Early Start has a substantial disability and qualifies under the Lanterman Act, can TCRC consider funding respite under Lanterman?

A: Yes. Q: How will TCRC communicate with parents who need translation?

A: Interpretation is allowable if it is necessary for the family to participate in IFSP meetings, case conferences, therapy instruc12 | TriLine Fall 2009

tion or when interpreter services are necessary to enable the child and family to benefit from other early intervention services during the time that the child is receiving the other early intervention services. Translation services are allowable if needed for the family to receive information in their native language.

Q: Is TCRC going to work with vendors to develop in-house translation services?

A: That would be desirable in the future. Currently, Service Coordinators will access translation and interpreter services as needed according to the guidelines outlined above.

USE OF PRIVATE INSURANCE As is currently required of families with children over 3 years of age, this proposal requires parents of children under 3 to ask their private insurance or health care service plan to pay for medical services covered by the insurance or plan. Intake and assessment will remain without charge.

Q: What are considered “medical services” in Early Start?

A: Occupational Therapy (OT), Physical Therapy (PT), and Speech Therapy.

Q: Does this apply to all families in Early Start?

A: All families that have an insurance plan, whether it be private or public, and whose child needs OT, PT or Speech, must demonstrate their effort to access these services through their insurance plan, if these services are medically necessary.

Q: Will TCRC pay for insurance co-pay or deductibles?

A: TCRC will not generally fund or reimburse parents for insurance co-pays or deductibles.

Q: Will TCRC continue to fund for services while a family is attempting to access payment of the service through their health plan?

A: Yes. TCRC will not delay or stop the provision of early intervention services specified on the IFSP while the family secures other funding.

Q: When does this provision go into effect?

A: This provision was effective July 28, 2009

Overview of the Prevention Program

by Early Start Managers Deena Bernabe and Anne Baltzer Eligibility for Early Start services, the regional center program that serves children under 3 years of age, changed when the budget was signed in July. The change in the California Early Intervention Services Act eliminated eligibility for infants and toddlers who were considered to be at risk for developmental delay and increased the developmental delay criteria for children over 24 months of age. The Department of Developmental Services developed a “Prevention Program” to serve infants and toddlers who meet the new criteria for high risk for developmental delay. Regional centers implemented this program on October 1, 2009.

The primary purpose of this program is to provide identification and monitoring of infants and toddlers at risk of having a developmental disability who may eventually need and qualify for early intervention services through Early Start.

Infants and toddlers eligible for the prevention program will be assigned a case manager from the regional center who will develop a Prevention Program Plan in collaboration with the family. The case manager will monitor the child’s development as well as provide parent training, guidance, support, and referral to community resources as necessary. Should a child begin to exhibit developmental delays while in the Prevention Program, that child may then be referred for evaluation and consideration for Early Start eligibility.

Some Frequently Asked Questions about Prevention Program Q: What is the target population for the Prevention Program?

A: Infants and toddlers who are at high risk for developmental delay or disability but have yet to manifest delays and have specific risk factors or children aged 24 through 35 months of age who have a developmental delay in one domain of 33% - 49%.

Q: Where is the referral made for the Prevention Program?

A: TCRC. All infants or toddlers potentially eligible for any regional center program will have a single point of entry at the regional center to determine eligibility for services.

Q: What services will be offered in the Prevention Program?

A: Intake services, assessment, case management and referral to generic agencies.

Q: Will children in the prevention program have an IFSP? A: No, their plan will be referred to as a Prevention Program Plan (PPP).

The development of this plan will be similar to the IFSP in that it will be developed by the case manager in collaboration with the child’s parent and family.

Q: What will be in the PPP? A: The PPP will include things such as documenting the resources and referrals identified for the child/family, the type and frequency of monitoring being done for the child, and factors supporting eligibility for the Prevention Program.

Q: What if a parent disagrees with TCRC’s decision regarding eligibility into Prevention Program?

A: A process is available for parents who disagree with the Prevention Program eligibility determination. Eligibility is the only action or decision of the regional center that may be appealed. The regional center‘s decision will be final. A parent may submit a written request to the regional center to initiate the appeal process.

Eligibility for Prevention Program 1. An infant or toddler is eligible for the Prevention Program when the regional center determines that an infant or toddler has a combination of two or more of the following factors: a. Prematurity of less than 32 weeks gestation and/or low birth weight of less than 1500 grams. b. Assisted ventilation for 48 hours or longer during the first 28 days of life. c. Small for gestational age: below the third percentile on the National Center for Health Statistics growth charts. d. Asphyxia Neonatorum associated with a five minute Apgar score of 0 to 5 e. Severe and persistent metabolic abnormality, including but not limited to hypoglycemia, acidemia, and hyperbilirubinemia in excess of the usual exchange transfusion level. f. Neonatal seizures or nonfebrile seizures during the first three years of life. g. Central nervous system lesion or abnormality. h. Central nervous system infection. i. Biomedical insult including, but not limited to, injury, accident or illness which may seriously or permanently affect developmental outcome.

j. Multiple congenital anomalies or genetic disorders which may affect developmental outcome. k. Prenatal exposure to known teratogens. l. Prenatal substance exposure, positive infant neonatal toxicology screen or symptomatic neonatal toxicity or withdrawal. m. Clinically significant failure to thrive, including, but not limited to, weight persistently below the third percentile for age on standard growth charts or less than 85% of the ideal weight for age and/or acute weight loss or failure to gain weight with the loss of two or more major percentiles on the growth curve. n. Persistent hypotonia or hypertonia, beyond that otherwise associated with a known diagnostic condition.

2. High risk for a developmental disability also exists when a multidisciplinary team determines that the parent of the infant or toddler is a person with a developmental disability.

3. A toddler is also eligible for the prevention program when the regional center determines that a toddler between the ages of 24-35 months has a developmental delay in one domain of 33% through 49% that requires intake services, assessment, case management and referral to generic agencies.

Fall 2009 TriLine | 13

Is Folinic Acid a Cure for Autism?

by James O’Hanlon, Ph.D., Psychopharmacologist I ordinarily regard claims that any treatment substantially reduces the core symptoms of autism with deep skepticism. That may be a healthy attitude in a world inhabited by unscrupulous entrepreneurs and their potential victims but it should not blind one to unanticipated breakthroughs. One may have occurred recently in Germany.

A publication1 from the international group led by Vincent Ramaekers, Professor of Child Neurology at Aachen University Hospital, described their successful use of folinic acid for treating “low functioning autism with neurological deficits.” The degree of global improvement shown by 25 children was little short of miraculous. Two, the youngest, were said to be “cured” of autism.

Ramaekers and his colleagues are widely respected medical researchers who have done much to characterize neurodevelopmental disorders caused by cerebral folate deficiency. The term, folate, commonly identifies an essential vitamin; i.e., folic acid. In the sense used by Ramaekers, it means the vitamin together with its biologically active derivatives.

After ingestion and absorption, the vitamin is rapidly converted into 5-methyltetrahydrofolate (5MTHF), which is carried in the circulation for uptake by various tissues where it participates in more than 100 vital enzymatic reactions. 5MTHF does not diffuse passively into the brain but rather is taken through the blood-brain barrier by special proteins; i.e., folate transporters. At first, Ramaekers’ group concentrated upon children with severe neurologic symptoms of uncertain origin.2 Many were found to have low 5MTHF levels in cerebrospinal fluid (CSF) but normal levels in blood. The investigators identified the causal factor as an antibody that binds and blocks folate transporters. They were able to bypass the blockade, restore normal folate levels in CSF and reduce the children’s symptoms by giving them folinic acid, which is similar to folic acid but more rapidly converts to 5MTHF. Ramaekers’ group then turned their attention to girls diagnosed with Rett Syndrome. They found that most of these children presented low 5MTHF and antibodies to the folate transporter in CSF samples. Those who did responded well to folinic acid.

However, only one of three attempts by independent groups to confirm the deficiency in Rett Syndrome was successful and the issue remains in doubt. Undismayed, Ramaekers’ group went on to conduct a similar study with autistic children.

Children entering this study satisfied standard diagnostic criteria for Autistic Disorder but also presented one or more severe neurological symptoms the investigators had come to associate with cerebral folate deficiency. Some symptoms, like epilepsy, are fairly common in autism but others, including involuntary movements, spasticity and decelerating head growth between 4 and 18 months, are definitely not. Given the selection bias, it is hardly surprising that these particular children also showed transporter antibodies and low levels of 5MTHF in CSF samples.

By correcting the deficiency, folinic acid dramatically reduced all of the children’s symptoms, including those that define autism.

The problem here is that current diagnostic criteria for autism are entirely behavioral. The diagnosis implies nothing about cause or treatment. In a minority of cases (ca. 10%), the diagnosis of autism can be qualified as secondary to a known biological defect, usually but not always hereditary. Cerebral folate deficiency is the latest addition to a sizable list of very different defects that can produce autistic behavior. If a treatment selectively corrects a particular defect and reduces autistic behavior to the point where it no longer satisfies diagnostic criteria, can it be called a cure for autism? The answer is YES if one equates autism with characteristic behavior. The answer is NO if one believes autistic behavior to be the common expression of a number of distinct brain disturbances, known and unknown, that must be separately treated and eventually cured by different means. Ramaekers and colleagues chose to interpret their results the first way. I choose the second.

It seems unlikely that the majority of children with a diagnosis of autism have a cerebral folate deficiency that can be corrected with folinic acid. But for the relatively few who do, that treatment may be highly beneficial, even curative when started at an early age.

The procedure for determining cerebral folate deficiency involves a lumbar puncture (“spinal tap”) to obtain CSF for assaying 5MTHF. Serious complications are rare but it is still not a procedure that most parents would sanction without a good reason. The reason might be autistic behavior accompanied by serious neurological disturbances of unknown origin.

1 Ramaekers VT, Blau N, Sequeira JM, Nassogne MC, Quadros EV. Folate receptor autoimmunity and cerebral folate deficiency in low-functioning autism with neurological deficits. Neuropediatrics 2007; 38: 276-281.

2 Ramaekers VT, Rothenberg SP, Sequeira JM, Opladen T, Blau N, Quadros EV, Selhub J. Autoantibodies to folate receptors in the folate deficiency syndrome. New England Journal of Medicine 2005; 352: 1985-1991.

Celebrating Contribution TCRC staff play an important role in our service delivery system. We honor all of our committed staff, including those who devote not only expertise and knowledge but dedicate many years of their careers. These individuals have devoted their lives to helping the people we serve. Their contribution has been substantial.

14 | TriLine Fall 2009

15+ Years of Service Wendy Beckham Ruth Camacho Soyla Ceja Claudia Light Ruth Lima

15+Years of Service Steven Neighbors Robert Nopar, MD Mark O’Keefe Lorna Owens Michael Quijada

15+ Years of Service Jeff Schweissinger Livia Smoquina Jackson Wheeler Katarzyna Ziemkiewicz

San Luis Obispo County

TCRC Staff News The Spirit of Excellence award program acknowledges employees who demonstrate teamwork, good citizenship, service to the people we serve, morale building, quest for quality, above and beyond dedication to their work. Employees are nominated by their colleagues and quarterly winners are also selected by a panel of their peers. Nominees receive a recognition certificate and $20 gift certificate. Quarterly winners receive temporary possession of the stone Dolphin Award and an opportunity to be chosen as one of the eight annual winners. Two annual winners receive the stone Dolphin Award and $300.

SPIRIT OF EXCELLENCE AWARDS

1st Quarter

2009

SPIRIT OF EXCELLENCE AWARDS

2nd Quarter

2009

Dave Mulvey Service Coordinator II, Atascadero Miguel Altamira Service Coordinator II, Oxnard Hector Guzman Service Coordinator I, Oxnard Sally Mendoza Secretary III, Santa Barbara

Diva Johnson Community Placement Plan Manager Shiloh Freer Service Coordinator I, San Luis Obispo Calley Romero Secretary III, Santa Maria Sheryl Gamble Service Coordinator II, Simi Valley

Diana Placencia-Ford Service Coordinator II, Atascadero Vanessa Ruiz Service Coordinator I, Oxnard Luzmaria Espinoza Service Coordinator II, Oxnard Sergio Arreola Facilities and Purchasing Assistant, Santa Barbara

Paulina Chwalisz Services & Supports Manager, Santa Barbara Marianne Culver Service Coordinator II, San Luis Obispo Wendy Beckham Service Coordinator II, Santa Maria Deena Bernabe Services & Supports Manager, Simi Valley

Promotions

New Hires

Rosemary Rice, Service Coordinator II Leslie Randleman, Service Coordinator II Evelyn Gonzales, Secretary III Alejandra Luna, Service Coordinator II Jesus Catalan, Service Coordinator II Raquel Blanford, Executive Assistant Betty Solanikow, Secretary III Olga Silva, Service Coordinator II Rosalba Cardona, Service Coordinator II

20+ Years of Service Bruce Anselmo Stephen Beard Lynda Bell Leslie Burton Paul Crafts Lisa Fox

Diva Johnson from Service Coordinator II to Community Placement Plan Manager Jennifer Dwyer from Peer Advocate to Peer Advocacy Supervisor

Joe Hoeflich from Community Placement Plan Manager to Services and Supports Manager Jessica Osuna from Service Coordinator I to Service Coordinator II

Atascadero Hotel Park Business Center 6005 Capistrano, Suite E Atascadero, CA 93422-7219 805.461.7402 FAX 805.461.9479 San Luis Obispo 3450 Broad Street, Suite 111 San Luis Obispo, CA 934017102 805.543.2833 800.456.4153 FAX 805.543.8725 Santa Barbara County Santa Barbara 520 East Montecito Street Santa Barbara, CA 931033278 805.962.7881 800.322.6994 FAX 805.884.7229 Santa Maria 1234 Fairway Dr. Santa Maria, CA 93455 805.922.4640 800.266.9071 FAX 805.922.4350

Ventura County

Dr. Monica Q. Mora, Psychologist I Crisanta Rocha, Service Coordinator II Lynda Jimenez, Service Coordinator II Maribel Williams, Service Coordinator II

Karla Flores-Martinez, Service Coordinator II Julianne Crosgrove, Secretary III Andrez Padron-Duran, Service Coordinator II

20+ Years of Service

25+ Years of Service

Lucinda Grayum-Cook Randy Howells Rene Kopes Sally Mendoza Pat Stretchberry Donna Zaza

Cheryl Aldrich Adele Anderson Bernardino Espinosa Ana Moreno Diane Placencia-Ford Letcy Ramos-Anselmo Wade Welsh Debby Wenkart

Oxnard 2401 East Gonzales Road Suite 100 Oxnard, CA 93030-2119 805.485.3177 800.664.3177 FAX 805.988.9521 Simi Valley 1900 E. Los Angeles Ave. Simi Valley, CA 93065 805.522.8030 800.517.2524 FAX 805.522.8142

30 / 35 Years of Service Celina Andrade (30+) Joseph Bremm David Mulvey (30+) Denise Renna (30+) Frank Renna (30+) Don Sorensen (30+) Suzanne Wertz (30+) Frank Bush (35+)

Fall 2009 TriLine | 15

Tri-Counties Association for the Developmentally Disabled 520 E. Montecito Street Santa Barabara, CA 93103

NONPROFIT ORG. U.S. Postage PAID Santa Barbara CA 93199 Permit No. 359

Greetings from the President

by Robyn Adkins, TCADD Board Director of Services and Transportation.

Changes enacted by the state of California legislature in 2009 affected many of the persons we serve. For persons we support and their families, worries about changes to services have been paramount over the last few months. Service Providers also anxiously awaited for the outcome of impact of the reduction in services, with concerns about the viability of their agencies or practices.

The TCADD Board of Directors is very supportive of the person centered approach that grounds the agency’s implementation of the Trailer Bill Language.

Here are some examples of the efforts of TCRC leadership to create the groundwork for adhering to the law: • Twelve representative stakeholder groups were convened to gather input to advise the TCRC Leadership.

Over 80 persons participated in stakeholder groups related to Early Start, Clinical services, Individual Choice Budget, Senior Services, Supported Living Services, Custom Endeavors Program, Downsizing of Large Facilities, Federal Programs, Residential Services, Statement

• A general letter was sent to 11,224 persons served, family members, service providers and other persons requiring information to explain the TBL, the implementation process and the appeal rights under the law.

• Customized letters were sent to 6994 persons served and their families to inform them of specific changes to their services. Service Coordinators, in many cases, initiated phone calls prior to receipt of the letter.

• TCRC staff participated in four Town Hall meetings facilitated

by AB 9, held in TCRC offices in Oxnard, Santa Barbara, Santa Maria, and San Luis Obispo.

• Dr. Omar Noorzad, TCRC Executive Director conducted weekly conference calls as Chair of the Executive Directors of Regional Centers including leadership from all regional centers, Association of Regional Center Agencies (ARCA) leadership and Terri Delgadillo, Director of Developmental Services (DDS) and deputy staff of DDS. • An Infrastructure Committee comprised of leadership of TCRC has convened regularly to address implementation strategies for the TBL.

opportunities to pose questions to TCRC leadership for answers or further research.

California continues to face significant fiscal problems – with an even higher deficit projected next year. What will this mean for us? There is uncertainty around this issue.

The mission and vision of our agency serves as the cornerstone for our continued work and our partnerships across all stakeholder groups.

Now is the time to support one another, share information and keep in mind our purpose of serving those who require our help to lead quality lives.

I encourage you to remain involved. Communicate with your local legislative representative about key issues to support the persons we serve, watch the voting record of your representatives, follow the testimony in hearings, and participate in hearings if possible.

This is a time to acknowledge the fiscal situation of our state along with advocating for protection of core services and supports.

With warm regards,

• The TCADD Vendor Advisory Committee (VAC) has been supported through regular

Call for Volunteers for the TCADD Board Potential members have business management, public relations, education or other business or non-profit experience. Family members of persons served by TCRC are encouraged to apply. Make a rewarding contribution to TCADD and help improve the quality of life for persons with developmental disabilities. Please contact Nancy Kavin at nkavin@mwdh2o.com for more information, or visit our web site: http://www.Tri-Counties.org/tcrc4/about-tcrc/tcadd/membership/ Editor & Design: Heather Wennergren, hwennergren@tri-counties.org Translation: Carlos Cerecedo | Photography: Wendy Guerrero

Tri-Counties Regional Center Headquarters 520 E. Montecito Street Santa Barbara, CA 93103 805.962.7661 Tel 800.322.6994 Toll-Free www.tri-counties.org

Tri-Counties Association for the Developmentally Disabled Inc. (TCADD) Board of Directors Robyn Adkins President

Bob Cobbs

Vice President

Justine Blevins Secretary

Stan Deakin Charles Devlin Cathy Farrar Mani Gaur Julie Kahn Michael Kaszycki Nancy Kavin Shanti Nadiminti Kathy Reed Robin Rosso

Upcoming Board Meetings Feb 5th........... 6:00 pm (in SB) March 13th.... 9:00 am (in SB) May 7th......... 6:00 pm (in SB) June 5th... 10:00 am (in VEN) Upcoming Town Hall Meetings Jan 20th...... San Luis Obispo March 17th..... Santa Barbara May 19th................ Simi Valley July 21st.............. Santa Maria