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 agencysponsored 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)4705227, 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%2020072
008.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 msebastyn@sdcoe.net. 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%20Sout
h%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%2005%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 MultiPurpose 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 msebastyn@sdcoe.net.
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 selfdetermination 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
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.
Photo courtesy of the National
Children's Study.
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 <http://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 communitybased 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 sdsp@dds.ca.gov
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%2
0span.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 info@hearingexchange.com 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-thescenes 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 socalimpact@yahoo.com
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October 10, 2007
Exceptional Family Resource Center does not promote or recommend any therapy, treatment, institution, etc.
and does not espouse any particular political, educational or religious views. Inclusion of information or
resources does not necessarily imply promotion or recommendation by EFRC. Content is provided for
informational purposes only.