Victory in the House November 11, 2005 s1

e-NEWS October 10, 2007

Dear Family and Friends,

Below, you will find that the inspirational quote for the week is by our very own Billye Geisecke. It is with great sadness that we must bid her a fond farewell, as she retires from our agency after many years of dedicated service to the disability community in San Diego and Imperial Counties. Billye has been a source of hope and empowerment for many families. We are happy for her to find time to read, relax and enjoy time with family because she has been a tireless ambassador for disability rights and parental involvement over the years.

INSPIRATION FOR THE WEEK:

“When a family realizes they have options and the necessary information to make choices, they regain a sense of control. Their feelings of helplessness are replaced by a sense of empowerment . . . hope is restored.” - Billye Giesecke

In her renowned book Letters to Sheri, Billye says “when they tell you something is wrong with your child, it is as though time skips a beat, and when it begins again, nothing is the same . . . parents often feel the loss of control as decision makers for their families.” Billye has always felt that her loss and life’s lessons are what give her “the credentials to be part of making this difference in these families’ lives.” In her book, she says it is her daughter, Sheri’s, legacy. We would all agree it is Billye’s legacy that guides us with hope and empowerment for a better future for our families. THANK YOU Billye! Enjoy your retirement. Have some FUN as you embark on new adventures. We say to you:

To all the days here and after May they be filled with fond memories, happiness, and laughter ------October is National Disability Employment Awareness Month - "Workers with Disabilities: Talent for a Winning Team"

A Proclamation by the President of the United States of America: "National Disability Employment Awareness Month is an opportunity to recognize the contributions and accomplishments of Americans with disabilities and to underscore our Nation's commitment to advancing employment opportunities for all our citizens. Americans with disabilities strengthen our country's workforce, and their achievements help keep our Nation the world's economic leader. Landmark reforms such as the Americans with Disabilities Act of 1990 have helped to ensure that individuals with disabilities are better able to engage in productive work and participate fully in the life of our Nation. It is important that we continue to expand on these opportunities for Americans with disabilities by eliminating the barriers and false perceptions that hinder them from joining the workforce. By enhancing the workplace environment for people with disabilities, employers can help provide access to jobs that allow these individuals to demonstrate their potential and realize their dreams." The rest of the President's Proclamation can be found at http://www.whitehouse.gov/news/releases/2007/09/20070929-3.html

ODEP Celebrates National Disability Employment Awareness Month Throughout October, the Office of Disability Employment Policy will profile on its Web site individuals who have personally benefited from agency- sponsored programs aimed at eliminating the chronic underemployment of people with disabilities, as well as employers and organizations that have successfully implemented strategies to hire, support, empower and otherwise value employees with disabilities. The profiles can be found at http://www.dol.gov/odep/index.htm

An update on current childcare legislation can be found at http://www.efrconline.org/admin/files/Legislation%20Information%202007-08.doc. ------UPCOMING EVENTS: For event details go to http://www.efrconline.org/calendar/maincal.cfm By clicking on an event link you may view the event details.

Local: 10/12/07 DSA Mom’s Night Out – Mission Valley 10/13/07 Special Needs Trusts 10/13/07 Día de la Mujer Health Festival - National City 10/16/07 School Problems Part I – Clairemont Part II on 10/23/07 10/18/07 Identifying Unique Strengths & Talents Among Those Who Learn Differently - Clairemont 10/20/07 DSA Halloween Social - Lakeside 10/22/07 Pushing the Limits - Oceanside 10/24/07 Child Development Training – Kearny Mesa 10/25/07 Talent Within: Self Employment Conference 10/27/07 San Diego Buddy Walk – Balboa Park Regional: 10/11/07 Defeat Autism NOW conference – Anaheim 10/16/07 Successful Transition Planning for All Students – Imperial 11/03/07 Buddy Walk Imperial Valley

------UPCOMING EFRC SUPPORT GROUPS: For details: http://www.efrconline.org/efrc.cfm?pid=Support_Groups

10/12/07 Grupo de Apoyo: Para familias de niños con necesidades especiales mayores de 5 años. Hora: de 9:30 a 11:00am Lugar: Boys and Girls Club, 1430 D Avenue, National City. No Contamos con cuidado de niños, por favor comparta del grupo sin sus menores. Informes: Laura Cervantes (619)470- 5227, Tessie Salcedo (619)594-7391 o EFRC (800)281-8252. Ver el volante a http://www.efrconline.org/admin/files/Support%20Group%20Spanish %205%20%2020072008.pdf o mapa

10/15/07 Evening Parent Support Group: For parents of children 0 - 5 with special needs meets in the Multi-Purpose Room at Greg Rogers Elementary School, located at 510 E Naples St, CV 91911.Supervised playtime is available ONLY by advanced reservation. Call (800)281-8252 or email [email protected]. Sponsored by Exceptional Family Resource Center, Hope Infant Family Program and First Five San Diego. View flyer at http://www.efrconline.org/admin/files/Support %20Group%20Parent%20Evening%20South%200708.pdf

10/17/07 Grupo de Apoyo: Para familias de niños con necesidades especiales. El tercer miercoles del mes de 10:00am a 12:00pm. Lugar: Centro Regional del Condado Imperial, 512 West Aten Road, Imperial, CA 92251. Para más información llame Bertha Mendoza al (760)355-0147. Ver el Volante a http://www.efrconline.org/admin/files/Support%20Group%20Imperialfall2007.pdf

10/18/07 DSA/EFRC Central Support Group: Support Group and informational meeting hosted by Down Syndrome Association and Exceptional Family Resource Center - for parents of children (birth-5) with Down syndrome. Meets monthly at the Harold J. Ballard Parent Center, 2375 Congress Street, San Diego 92110 (Old Town) from 6:30 - 8:30pm. Supervised play for children up to age 10 is available with reservation. Please call EFRC at (619) 594-7416. View flyer at http://www.dsasdonline.org/admin/files/Support Group DSA 20072008.pdf

10/19/07 Grupo de Apoyo: Para familias de niños menores de 5 años con necesidades especiales. Lugar: Boys and Girls Club, 1430 D Avenue, National City, CA 91950. Contamos con cuidado de niños. Información y reservaciones de cuidado de niños, llame a Laura Cervantes 619-470-5227, Tessie Salcedo 619-594-7391 o EFRC 800-281-8252. Ver el volante a http://www.efrconline.org/admin/files/Support%20Group%20Spanish%200- 5%2020072008.pdf o mapa a http://www.efrconline.org/admin/files/Support%20group %20Spanish%200-5%20map.pdf

10/22/07 Autism Parent Support Group: For parents of young children on the Autism spectrum. Meets in the Multi- Purpose Room at Greg Rogers Elementary School, located at 510 E Naples St, CV 91911.Supervised playtime is available ONLY by advanced reservation, Call 800-281-8252 or email [email protected]. Sponsored by Exceptional Family Resource Center, Hope Infant Family Program and First Five San Diego. Click here to view flyer or map.

EFRC would like to extend heartfelt congratulations to our very own Edna Frizzell for 10 years of outstanding service to the SDSU Research Foundation. She was honored last Friday at SDSU Cox Arena for her dedication and hard work.

PEER MENTORS WANTED! The Center for Emerging Leadership is looking for individuals 18-30 years of age with Developmental Disabilities who are interested in working as Peer Mentors and Ambassadors. People with developmental disabilities who have experience with self-advocating for services, and self- determination are the best people to offer support and teach people learning about self-determination. You will be the guide for these new people as they learn about and begin to practice self-determination.

MENTORS are NOT VOLUNTEERS; they are paid employees of the San Diego State University Research Foundation! Experience with Self Advocacy and/or Public Speaking is desired. Individuals hired will be provided with Paid on the Job Training. MENTORS will give one to one support to CEL participants. Some things peer mentors do include: phone calls to answer people’s questions, sharing ideas about how to find and train support people, attending planning meetings with the people you support. Details can be found at http://www.interwork.sdsu.edu/cel

------RESEARCH STUDIES:

San Diego Union Tribune Photo courtesy of the National Children's Study. October 5, 2007 Major Child Health Study Planned Long-term research will need 1,000 area families by Cheryl Clark

Researchers soon will begin recruiting 100,000 parents-to-be, including 1,000 in the San Diego region, to join a study looking at how genes and environment influence children's health into adulthood.

The National Children's Study, which Congress mandated in 2000, will begin tracking the children before birth through age 21. The $69 million project is the largest examination of child developmental health attempted in the United States.

The goal is to learn what factors - genes, birth weight, dust, diet, chemicals, lifestyle and other behaviors or circumstances - are behind the increase in diabetes, obesity, attention-deficit disorder, autism and other conditions.

Online: For more National Children's Study information, go to nationalchildrensstudy.gov

"We're creating a national repository . . . that will allow us to go back years from now and answer questions about health that we haven't even thought of yet," said Christina Chambers, principal investigator for the University of California San Diego portion of the study. UCSD, in partnership with San Diego State University, is one of 105 centers that will recruit and follow the 100,000 children. Other partners include the county Department of Health and Human Services.

One goal of the San Diego portion of the study, Chambers said, is to examine a theory that pregnant women with diabetes are more likely to give birth to children with birth defects.

UCSD will receive $14 million of the $69 million for the first five years of the project. Parents and children - when they turn age 7 - will be paid for participating, Chambers said. The estimated compensation will be about $50 per visit.

Recruiting will be done through door-to-door random surveys.

Recruiting will start in Orange County next year and in San Diego County in 2009. The National Institute of Child Health and Human Development is funding and running the study.

A Prospective Study of Mercury Toxicity Biomarkers in Autistic Spectrum Disorders by David & Mark Geier can be found at http://www.usautism.org/PDF_files_newsletters/A_Prospective_Study_of_Mercury_Toxici ty_Biomarkers_in_Autistic_Spectrum_Disorders1.pdf ------INPUT FROM THE COMMUNITY REQUESTED:

On November 30th, the State Interagency Coordinating Council on Early Intervention will meet at the Crown Plaza Red Lion Hanalei Hotel, located at 2270 Hotel Circle North in Mission Valley, San Diego 92108. If you are a parent, grandparent or guardian of a child with special needs, they want to hear from you. Newcomers orientation is at 8am and public comment will be at 10:00am. For more information, call 800-515-2229 or visit www.dds.ca.gov

------ADVOCACY:

Department of Developmental Services New Proposed Draft Regulations for "Self Directed Services" Issued

PUBLIC Written Comment Deadline: 5:00pm Friday, October 12th

SACRAMENTO (CDCAN) - Moving forward on the long delayed "Self Directed Services" program that policymakers say will have a major impact on thousands of children and adults with developmental disabilities who receive regional center funded services, the Department of Developmental Services released early Friday evening new proposed draft regulations and a draft proposal to the federal government to fund the program, for public comment. Advocates and policymakers agree that the program, when fully implemented, could have a dramatic impact on the entire regional center system. [CDCAN Note: You can get an official copy of each document by going to the CDCAN website at www.cdcan.us ] The implementation of the program will come during a year when it is believed that the budget deficit will swell anywhere from $5 to $10 billion with looming potential cuts in spending.

The Self Directed Services program is based on the concept of "self determination" where a person with disabilities has more control and decision making in choosing existing types of services and supports or creating new ones entirely, with certain significant limitations and restrictions. The program is scheduled to begin rolling out in March 2008 (about 2 regional centers per month) though this schedule could change when the Governor submits his new budget on January 10th. The program is voluntary.

Who This Impacts * Potentially thousands of eligible children and adults with developmental disabilities and their families who are or will be receiving community-based services funded by the non-profit regional centers. This includes children and adults with autism and others who are seeking different or innovative supports and services not possible or allowed currently. * Thousands of community-based providers who might be able to offer services or supports under the Self Directed Services program - or will have to look at ways to develop different supports or services that can be offered under the program. Some community-based providers face the potential prospect of expanding supports and services under this program. Some might face the prospect of losing people, including staff, because the type of services they offer not are not allowed under Self Directed Services Program. Self Directed Services, once fully implemented, could result in a shift and change of community-based organizations and how they deliver services and supports. Policymakers and advocates disagree on what that could end up being. * Thousands of workers - including those who provide supported living services, or In-Home Supportive Services (IHSS) and other similar direct care workers who could see changes, though much of that depends on what organization or individual the worker is employed by. * Regional centers will be impacted as they will be responsible for overseeing the local implementation of the program

CDCAN Townhall Telemeetings Focusing on Self Directed Service Regulations * CDCAN will be scheduling a series of CDCAN Townhall Telemeetings on this issue in order to generate interest in providing comments and feedback to the Department of Developmental Services regarding this program. In 2005 CDCAN held a series of townhalls held during workdays, evenings and weekends that attracted hundreds of people at each on this issue. * In addition, CDCAN Townhalls will also be focusing on other issues impacting developmental services under the Lanterman Developmental Disabilities Services Act, including the two hearings scheduled by the Assembly Human Services Committee (October 24th at the Capitol and November 16th in San Jose), the Legislative Blue Ribbon Autism Commission report, and a report that is due October 1st from the Department of Developmental Services to the Legislature on ways to control and cap spending in regional center operations and community- based services and supports. That report was required in AB 203, as part of the 2007-2008 State Budget. Advocates are concerned about that report and what it may propose.

Background of Self Directed Services The Self Directed Services program proposed by the Schwarzenegger Administration in January 2005, was passed by the Legislature and approved by the Governor as part of the State Budget Act of 2005 (the program is mentioned specifically in a budget related bill - called a "trailer bill" - AB 131. The program is based on the self determination pilot projects that have been running successfully in five different areas of the state for several years. The Self Directed Services program however has significant differences from those pilots - and the program was initially proposed by the Schwarzenegger Administration as a "cost containment" measure - meaning a program meant to control or reduce spending. However many advocates have embraced the program as outlined so far as a innovative step in providing community-based supports and services - a step that could be used in other programs for other persons with disabilities.

AB 131 gave the Department of Developmental Services the authority under Section 4685.7 of the Welfare and Institutions Code to, "Contingent upon approval of a federal waiver, the Self-Directed Services Program is hereby established and shall be available in every regional center catchment area to provide participants, within an individual budget, greater control over needed services and supports."

Public Comment Due on Draft Regulations and Draft Proposal To Federal Government The Department of Developmental Services has prepared two important documents for public comment prior to the Department submitting the regulations and waiver application. The Department of Developmental Services is not required to issue these documents for comment before submitting it officially - but said, in a recent CDCAN Townhall Telemeeting, that they wanted to hear from the public and correct any errors or mistakes. The two documents are (available on the CDCAN website at www.cdcan.us) PUBLIC Written Comment Deadline is 5:00pm Friday, October 12th.

DRAFT PROPOSED SELF DIRECTED SERVICES REGULATIONS * This is the document - based on the language of AB 131, that will actually implement how the Self Directed Services program will be run. The language in this document is important because it is document that everyone - regional centers, advocates, families, people with developmental disabilities, providers, the State, will have to follow. * The Department of Developmental Services sent out an earlier version of this draft last year and received comments. This revised version (dated September 28th) is based on that and reflects suggestions, comments received. * The Department of Developmental Services could revise this version or they could simply move it forward (meaning the proposed regulations would be issued officially, that includes an official 45 day public comment period.) HOME AND COMMUNITY BASED SERVICES SELF DIRECTED SERVICES WAIVER APPLICATION * This document is officially called "The Home and Community-Based Services (HCBS) Self-Directed Services Waiver application definitions Waiver Application Service Definitions" and is simply a proposal to the federal government for Medicaid funding. * It is called a "waiver" because the proposal is asking the federal government to waive existing federal Medicaid laws to allow this program to be funded under Medicaid for a certain time period. * The current 5 self determination pilot projects in California is, because of the nature of the pilots, receive only state funds. * State departments are not required to circulate draft waiver applications - but the Department of Developmental Services felt it was important to receive public comment.

Send comments to: By US Mail: Department of Developmental Services Services and Supports Section, Attn: Gina Dela O 1600 9th Street, Room 340 (MS 3-13) Sacramento, CA 95814

OR email to [email protected]

If you have questions about either document, please Call Gina DeLao at the Department of Developmental Services at (916) 651-7705.

------RESOURCES:

Autism Spectrum Disorder: An Introductory Guide from Early Diagnosis to Primary School Services For Parents, Care Providers, Case Managers and Other Concerned Individuals can be found at http://www.efrconline.org/admin/files/Autism%20Introductory%20Guide.pdf or Trastorno del Espectro Autista: Una Guía Introductoria desde el Diagnóstico Precoz hasta los Servicios de Escuela Primaria Para los padres, asistentes de salud, administradores de caso y otras personas involucradas -http://www.efrconline.org/admin/files/Autism %20Introductory%20Guide%20span.pdf

HearingExchange Tweens for Kids Ages 9-13 Now Online HearingExchange Tweens, a free social network group for kids with hearing loss ages 9-13 is now online. Kids can message and blog in a safe, parent-controlled environment. Set up an account at http://www.imbee.com. Have your child set up their screen name and profile. Email Paula Rosenthal at [email protected] with your child's screen name. She will send an invitation to their Imbee account inviting them to join HearingExchange Tweens. Once they accept, they will be a part of the group! Thank you for helping to promote this great opportunity for tweens to connect with one another!

The Children's Tree House 5th "Deaf Fun" Walt Disney World Youth Education Series (Y.E.S.) Trip. Excite your K-12th grader with hands-on, eye-opening learning behind-the- scenes at Walt Disney World®. See the shows at the Disney World parks wonderfully interpreted. http://www.deaffun.homestead.com/files/dw_2008_general.doc

California Bipolar Foundation is pleased to announce its formation. The foundation's mission is to eliminate Bipolar Disorder through the advancement of research; to provide and enhance care and support services for all affected; and to erase associated stigma through public education.

Bipolar Disorder, also known as manic-depressive illness, is a serious brain disease that causes extreme shifts in mood, energy, and functioning. It affects approximately 3.3 million Americans ( 1 in 83 adults). The disorder typically emerges in adolescence or early adulthood, but in some cases appears in childhood. Cycles of depression, mania, or "mixed" manic and depressive symptoms typically recur and may become more frequent, often disrupting work, school, family, and social life.

The Foundation, founded by President Muffy Walker MSN., MBA, John C. Reed MD., Ph.D. , Lynn Hart Muto JD, Karen Sheffres DVM, Lisa Weinreb JD, and Karen Silberman will officially launch on Thursday, October 11, Bipolar Disorder Awareness Day.

Reed, who will co-chair the Scientific Advisory Board (SAB) along with National Institute of Mental Health's Husseini K. Manji MD., has already put together an impressive board of renowned behavioral health scientists including Hilary Blumberg MD; Yale University School of Medicine, Eric Nestler MD., Ph.D.; University of Texas Southwestern Medical Center, Kay Redfield Jamison Ph.D.; John Hopkins School of Medicine, Rob Malenka MD., Ph.D., Stanford University Medical Center, and John Kelsoe MD; University of California, San Diego. The Honorary Committee, a group who supports mental health issues, includes Pamela S. Wygod, Sheila Lipinsky, Deborah K. Torbati, Pauline Foster, Erna F. Viterbi, actress and author Carrie Fisher and distinguished author and Washington Post reporter, Pete Earley . In addition to the Executive and Scientific Advisory Boards, a Patient Advisory Board, made up of both teen and adult patients who have Bipolar Disorder, will advise the Executive Board on pertinent educational, care and supportive issues which need to be addressed.

------RECREATION:

Southern California Families of Deaf and Hard of Hearing Children. Explore, play, and ride REAL trains!Families and friends, please join us for a fun meet and greet Pot Luck Picnic at Griffith Park’s Travel Town on Sunday, October 20th 2007 from 12:00 pm – 4:00 pm Northwest Picnic Area 5200 Zoo Dr. Los Angeles CA 90027. Parking and admittance is FREE! Train rides $2.00. This is a parent organized event. An opportunity to socialize, share, and play. All are welcome! RSVP with your potluck item to [email protected]

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