Highlights from Family Voices of California\'s annual Health Summit

1. 2010 HEALTH SUMMIT HIGHLIGHTS
Emilee Leon and Eileen Crumm
Francisco Garcia with his daughter
Rosa Valledor and Rocio de Mateo Smith
Kenneth, Cinthya and Nathan Padilla with Senator Mark Leno
The voice of families
The vision of quality health care
The future for children and youth with special health care needs
FAMILY VOICES OF CALIFORNIA |1

2. 2010 H EALTH SUMMIT AND LEGISLATION D AY
Family Voices of California (FVCA) is a statewide collaborative Assemblymember Tom Ammiano. Participants met with nearly
of locally‐based parent‐run centers working to ensure quality 30 legislators to discuss policy issues and exchanged informa‐
health care for children and youth with special health care tion to continue the dialogue beyond the Summit.
needs. On March 2‐3, 2010, FVCA held its eighth statewide
Health Summit in Sacramento, bringing together families, In an evaluation of the Summit, participants overwhelming
advocates, state agency representatives, health policy advo‐ responded that the conference enabled them to take action
cates, legislative representatives, providers and insurers. The and address policy issues affecting children with special health
Summit focused on identifying budget issues in California that care needs. Some participants went further to say:
significantly affect the health care of special needs children
I’d never imagined how helpful and educational this would be.
and developing strategies to ensure that families in California
Now I have the knowledge to make a difference.
are able to access family‐centered, affordable care.
Amazing speakers. Fresh ideas to obtaining positive results.
This year’s Health Summit proved to be a great success with a
My point of view on certain issues changed because of the
total of 114 participants, including 51 families, 47 agencies and
information I received today.
13 distinguished speakers. Sixteen counties were represented,
ranging from as far north as Shasta County all way to San
This report profiles some of the parents and advocates who
Diego.
were empowered by the Health Summit to establish programs,
develop partnerships and support legislation that promotes
FVCA incorporated a number of improvements on last year:
quality care tailored to the needs of their loved ones and
break‐out sessions for families to absorb information and
community.
exchange ideas; the Networking Family Dinner to allow fami‐
lies to connect; and Spanish translation of all presentation ma‐
terials to accommodate Spanish‐speaking families.
On March 3, Legislation Day, 30 participants gathered at the
State Capitol to learn how to impact legislation that would Tara C. Robinson, Manager
provide access to quality, affordable health care for special Family Voices of California
needs children and youth. The day began with brief speeches trobinson@familyvoicesofca.org
by Tim Shannon & Erin Auberg‐Givens of the Children’s Spe‐
cialty Care Coalition, followed by a rousing speech by
The Measure of Success
Qualitative Feedback from Families and Advocates
Evaluation questions in
60%
response to the Summit
PERCENTAGE RESPONDED
50%
Did you learn more about policy
issues that af f ect children with 40%
special health care needs?
30%
Do you have new ideas about
addressing policy issues? 20%
10%
Are you more prepared to take
action to address policy issues? 0%
Strongly Agree Disagree Strongly
Agree Disagree
RATING
2 | HEALTH SUMMIT 2010

3. LIBBY H OY : BUILDING B RIDGES TO QUALITY C ARE
Raising a child with an incurable illness to FVCA’s newsletter about the chal‐ rent cuts in health care programs. Every
presents challenges that can frighten, lenges of using private insurance to care time I attend, I grow in my confidence,
confuse and isolate. Libby Hoy has for children with special needs. In not only to pursue health care improve‐
devoted her life to guiding parents response, FVCA asked her to speak pub‐ ment, but also in empowering other
through the gauntlet of challenges to licly. Initially, Libby was reluctant: “It family members to join me.”
experience hope, triumph and unity. was not an appealing
Her resiliency, optimism and service idea to talk with strang‐ Following the Summit,
have sustained her throughout the 14 ers about our mountain “Every time I attend, Libby teamed with Miller
years she and her husband have raised of debt, our low credit I grow in my confi- Children’s Hospital, the
three sons with mitochondrial disease, rating, and the stream of dence, not only to Hospital Association of
an impairment of cells that can cause calls from collection pursue health care Southern California and
organ dysfunction. From countless sur‐ agencies.” But then she improvement, but the National Health Foun‐
geries, ER visits and therapy sessions, thought of the problems dation to launch the first
also in empowering
Libby has learned that the best ally in within the system and annual Southern Califor‐
other family mem-
her children’s health care and quality of realized the importance nia Patient & Family Cen‐
life is collaboration. 1
of speaking out: “I
bers to join me.” tered Care Conference.
thought about all the The conference was held
Libby’s mission to advocate for families, like ours, who are living just at Miller Children’s Hospital and
patient care began a decade ago when one medical crisis away from bank‐ attended by more than 300 health care
she volunteered to counsel parents at ruptcy.” A representative of the Ameri‐ professionals, 52 hospital and organiza‐
Miller Children’s Hospital in Long Beach. can Academy of Pediatrics arranged a tional representatives, as well as 29
Now, as the hospital’s Family Advocate, conference call between Libby and a families and patients. In an evaluation
she has laid the groundwork for the group of U.S. Congressional staffers of the conference, 97% of participants
Patient and Family Centered Care Pro‐ from the Committee on Energy and surveyed wanted to be involved in an
gram (PFCC), a program that promotes Commerce. Libby was at first daunted ongoing effort to support PFCC prac‐
respect, information sharing and ongo‐ by the call, but Tara Robinson, FVCA’s tices.
ing communication between patients, Manager, coached her on how to ad‐
their families and health care providers. dress the committee. During the call, Libby’s sons have triumphed over limi‐
As the voice for PFCC, Libby is a confer‐ Libby spent 20 minutes describing her tations characterized by mitochondrial
ence presenter for the Hospital Associa‐ family’s experience with medical debt. disease. They are currently involved in
tion of Southern California and a Family The result? The committee invited her sports, and her eldest is in college. He
Centered Care Consultant to four
to come to Washington, DC to share her had received the “Most Inspiring Stu‐
hospitals.2 story if a hearing could be arranged. dent” Award from the Long Beach Uni‐
fied School District. By partnering with
Last year Libby’s voice was heard at a One year later, FVCA continues to sup‐ medical staff and telling her story,
national level after she shared her story port Libby in reaching out to families Libby is working to ensure that children
with FVCA. She had submitted vignettes and promoting patient‐centered care. with incurable illness are not defined by
After attending their disease, but are recognized for
the Health Sum‐ who they are and what they can
mit, she said, achieve. ♥
“The Summit was
Footnotes
definitely helpful
1 Miller Children's Hospital, "Using Personal Life Les-
in providing me sons to Help Others". Mercury. April 2007: 17-18.
the confidence 2 Hoy, Libby. Patient and Family Centered Care. August
and the sub‐ 10, 2010. <http:// www.ekhealthcare.com/>.
stance of the
issues as I moved
f o r w a r d
with planning a
conference that
would be rele‐
vant to PFCC
practices in the
context of cur‐
(Left to right) Libby Hoy’s sons: Nicholas, 16; Jack, 13; and Stephen, 18
FAMILY VOICES OF CALIFORNIA |3

4. KEVIN-DAT VU: An Empowering Voice for a New Generation
Kevin‐Dat Vu knows how to rouse a g e o g r a p h i c
crowd. At his high school graduation, areas. Their reasons
classmates cheered him on as he for joining the group
accepted his diploma. For Kevin, the ranged from seeing
act of walking to the podium was a it as “an opportunity
remarkable feat and a testament to to branch out,”
his determination. Born with cerebral “move beyond my
palsy, 20‐year‐old Kevin‐Dat Vu sur‐ comfort zone, and
passed doctors’ expectations by “learn more about
learning to speak, walk with crutches advocacy,” to “my
and even play basketball.1 But Kevin’s parents thought it
greatest achievements include far would be good for
more than physical and intellectual me.” As a council‐
milestones. At the age of 12, Kevin member, Kevin has
embarked on a mission to become an learned about the
Kevin‐Dat Vu joins other advocates at the State Capitol
empowering voice for people with historical framework
disabilities. Kevin explains, “My of the ADA, Medi‐Cal and California Kevin admits there is still much work
determination to do all that I do and Children’s Services, HIPPA laws to be done to increase awareness of
not let my disability stop me comes regarding the rights of clients to health care needs. In particular, he
from the passion and the drive that I involve or not involve their parents, says disabled youth “do not realize
have to make a difference in today’s state and federal legislative proc‐ the grand scale of things.” So he car‐
society. I see kids with the potential esses, budgets and budget cuts. ries the budget summary in his back‐
to learn everyday who suffer because pack, prepared at any moment to
they cannot speak for themselves.” 2 At the 2010 Health Summit, Kevin speak for those who have yet to find
learned how proposed budget cuts to their voice. ♥
As an advocate, Kevin collaborates health care could affect him and his
Footnotes
with educators, school administra‐ community, fueling his fire to advo‐
1 Lester, Jessica. "Kevin‐Dat Vu: Thriving Despite
tors, health care professionals and cate for disabled youth. Kevin has Adversity". Asian Pacific Review. December 5, 2007.
equal opportunity employers to offer attended town hall legislative forums, Vance, Christina. "Hoover High graduate rises to the
solutions to the daily challenges dis‐ but found the Health Summit to be a occasion: Student with cerebral palsy leaves his
wheelchair behind." The Fresno Bee. June 09, 2007.
abled people face. His advocacy more valuable resource: “As much
extended to news as I watch, I have a better grasp 2 Vu, Kevin‐Dat. "Steps of Faith and Hope: A Journey
in a Lifetime". August 1, 2010.
“I calculated the total the White of the state and federal budget be‐ <http://kevindatvu.com/life/>.
of the trigger cuts and House in cause of the Health Summit. It gave
overall cuts, and it was 2006 when me a better understanding of how
he met with many people are affected, what sec‐
$7 billion, $936 million.
P r e s i d e n t tions of people are affected.”
Just to see that opened George Bush
my eyes in a big way.” to discuss FVCA provided a three‐page sum‐
health care mary of the budget that allowed
and education reform. As a nationally Kevin to comprehend the gravity of
renowned public speaker, he has the reductions at a glance: “I calcu‐
inspired disabled youth and has pre‐ lated the total of the trigger cuts and
sented before the State Independent overall cuts, and it was $7 billion,
Living Council (SILC) and the Califor‐ $936 million. Those numbers are
nia Foundation for Independent about me. Just to see that opened my
Learning Centers (CFILC). eyes in a big way.” The Health Sum‐
mit armed Kevin with knowledge that
Kevin has also been an active mem‐ has given him more leverage and
ber of the Family Voices of California confidence when speaking with legis‐
Youth Advisory Council (YAC) since lators, including Insurance Commis‐
its inception in 2005. Via an sioner Mike Villines and a representa‐
a p p l i c a t i o n p r o c e s s , F V C A tive of Senator Thad Cochran,
selected youth ages 14 to 23 from cosponsor of the Blind Persons
diverse cultural backgrounds and Return to Work Act.
4 | HEALTH SUMMIT 2010

5. NITA THOMPSON: Crusading for a Cure
“Everyone should have a Nita in their Bone Marrow Registry for Sickle Cell Health Summit’s Legislative Day, Nita
lives. She is one of a kind!” exclaimed Disease Awareness. What began as a described her visits to the State Capi‐
E. Carr, a student of Nita L. Thomp‐ support group for concerned parents tal as a success: “The input I was
son. ¹ E. Carr is just one of many lives has evolved into a grassroots organi‐ allowed to share was reacted to posi‐
inspired by Nita’s enthusiasm, com‐ zation that teams with blood centers tively.” She proceeded to visit legisla‐
passion and fortitude. Nita’s radiant and the Sickle Cell Foundation of Cali‐ tive offices in her
smile and dynamic presence uplift fornia to recruit blood and marrow area of Los Angeles “You encourage
those she counsels as a surrogate donations, which can cure sickle cells. and worked with us to do more.
parent and success coordinator. But For her extraordinary leadership and Assemblymember
You provide us a
beneath the surface lies the heart of community service, Assemblymem‐ Anthony J .
a warrior, fiercely dedicated to the ber Curren Price, Jr. honored Nita at Portantino t o
venue where . . .
health care and realized potential of his annual “A Tribute to 51 SHeros” achieve passage of you allow us to
people with medical challenges. Awards Ceremony.3 AB52, a bill that dialogue . . .”
proposes a n
Nita has shepherded her loved ones, Because sickle cell disease is a public umbilical cord blood collection
including her son, through the ardu‐ health problem, the United Nations’ p r o g r a m f o r p u b l i c u s e .
ous and frightening journey of being December 22, 2008 resolution desig‐ Governor Schwarzenegger signed the
diagnosed, hospitalized and treated nated June 19 of each year World bill September 29, 2010! Passage of
for sickle cell anemia. To ensure her Sickle Cell Day. Nita has been the this bill is monumental in offering
loved ones receive the best care dur‐ “Paula Revere,” informing people and hope to those with sickle cell anemia
ing their hospital stay, she remains at offering suggestions for global activi‐ as umbilical cord blood can treat the
their bedside. She explains, “I ties that honor this day. disease and immune disorders.
decided not to eat, drink a few sips
only to limit restroom use, never As an advocate, Nita encourages her Since the Health Summit, Nita has
sleep, only doze, for fear that if I did, community to act by saying, “We facilitated a monthly forum that
something would happen to disturb need to empower ourselves to brings together medical staff and
or hinder the recovery of my loved empower others!” At the Health members of the sickle cell community
ones . . .” Alerting medical staff to Summit, the experience of dialoging to discuss health care challenges and
intervene when necessary, her dili‐ with other advocates empowered solutions. On the horizon is an advo‐
gence has saved lives. 2 Nita. She said, “Finding out about cacy training program for parents and
laws and about how everyone was guardians. Nita has even forwarded
Beyond the hospital, Nita works tire‐ impacted and affected . . . empow‐ FVCA literature to advocates in Wash‐
lessly to save lives as the chair of the ered me to talk knowledgeably when ington D.C. and encourages people to
African American Blood Drive and I met with my legislators.” On the support their local FV network.
In response to the Health Summit,
Nita told FVCA, “You encourage us to
do more. You provide us a venue
where . . . you allow us to dialogue . .
. .” Considering the impact Nita has
made thus far, FVCA is ever more
committed to continuing the dialogue
and empowering SHeros like Nita. ♥
Footnotes
1
Thompson, Nita L. “Star’s We Are and Associates:
What People Say about Nita.” Star's We Are and
Associates. August 10, 2010.
<http://starsweareandassociates.webs.com/
whatpeoplearesaying.htm>.
2
“Sickle Cell Disease Awareness.” African American
Blood Drive and Bone Marrow Registry for Sickle Cell
Disease Awareness. August 10, 2010. <http://
aablooddriveandmarrowregistry4sicklecellaware‐
ness.webs.com>.
3
Price, Senator Curren. “Senator Curren Price: Tribute
to SHeroes.” 26th Senate District. August 10, 2010.
<http://dist26.casen.govoffice.com >.
(Left to right) Debra Capers, Assemblymember Anthony J. Portantino and Nita Thompson
FAMILY VOICES OF CALIFORNIA |5

6. T HE P ADILLAS : ONE F AMILY ’ S J OURNEY TOWARD A DVOCACY
The journey from concerned parent
to empowered advocate begins with
awareness. Graduates of an eight‐
month Spanish Parent Mentor Pro‐
gram at Bay Area’s Support for Fami‐
lies, the Padillas received information
on how to advocate by learning about
parental rights, the IEP process, law
and policy, and how to build an Indi‐
vidualized Program for their child
through the school district. They now
provide information and support to
other families in the Bay Area. Their
work doesn’t stop there: the Padillas
also educate professionals by partici‐
pating on Family‐Centered‐Care pan‐
els and offering the parent’s perspec‐
tive for the benefit of future pediatric
and educational professionals. (Left to right) Kenneth, Cinthya and Nathan Padilla; Senator Mark Leno; Juno Duenas; Laurie Strawn
At the Health seemed genuinely interested, <and> us grow. ” When state agency repre‐
“Our story Summit, FVCA inquired about my son's disability. sentatives ask how he has been well
matters, especially took the Padillas Our story matters, especially when informed, Kenneth tells them about
when shared with one step further shared with legislators.” the Summit’s Legislation Day. This, he
legislators.” in learning to explains, has opened many doors to
advocate for their In addition, the Padillas walked away an often closed system. ♥
son’s health care. with newfound confidence and
On Legislation Day, FVCA led the insight. With regard to state agencies,
Padillas to the State Capitol to meet Kenneth Padilla says, “I've been bet‐
with State Senator Mark Leno. The ter willing to work with them be‐
Padillas were encouraged by his cause . . . I know more laws . . . the
response: “Mark Leno gave us time, result has been positive and has made
THE PANEL OF DISTINGUISHED SPEAKERS
Family Voices of California was honored to provide a platform for the following presenters who made the Health Summit a success.
March 2, 2010 Presentations David Maxwell‐Jolly, Director Laurie Soman, Senior Policy Analyst
Department of Health Care Services Lucile Packard Children’s Hospital
Joan E. Crook, Program Director
CARE Parent Network Julia Mullen, Deputy Director Rosa Valledor, Parent‐to‐Parent Mentor
Community Services and Supports Division CARE Parent Network
Juno Duenas, Executive Director
Support for Families Marty Omoto, Founder and Director
California Disability Community Action March 3, 2010 Legislation Day
Lyn Gage, RN, Program Manager II Network
Department of Managed Health Care Erin Aaberg Givans, Executive Director
Help Center Children’s Specialty Care Coalition
Edwin Park, Senior Fellow
Center on Budget Policy and Priorities Tom Ammiano, Assemblymember
Jessica Lehman, Lead Community Organizer
Community Resources for Independent 13th District, California State Assembly
Carolyn Ramirez, Caseworker/Field Rep
Living Office of Congresswoman Doris O. Matsui Tim Shannon
Rocio de Mateo Smith, Executive Director Shannon Government Relations
Jean Ross, Executive Director
Area Board 5 on Developmental Disabilities
California Budget Project
6 | HEALTH SUMMIT 2010

7. FVCA WELCOMES Y OUR S UPPORT FOR THE
2011 H EALTH SUMMIT !
Next year’s Health Summit promises to be an enlightening and powerful experience for families, advocates and youth. The panel
of renown speakers will include David Maxwell‐Jolly (Department of Health Care Services), Edwin Park (Center on Budget Policy
and Priorities), Jean Ross (California Budget Project) and Laurie Soman (Lucile Packard Children’s Hospital), among others.
The impact of the Summit depends in part on the generosity of its sponsors, who give advocates like the Padillas,
Kevin‐Dat Vu, Nita Thompson and Libby Hoy the opportunity to attend. With your help, we can make a difference for
children and youth with special health care needs!
What Your Sponsorship Will Do:
$150 provides a stipend to help a family attend
$200 offers families an opportunity to discuss policy issues with their legislator
$500 empowers families with cutting‐edge advocacy and leadership training
$600 provides breakfast for attendees
$800 sends one family to the Summit
$900 provides lunch for attendees
$2,500 covers translation for Spanish‐speaking families
$3,500 funds the Networking Family Dinner for attendees to build partnerships and exchange ideas
$6,500 covers essential Summit logistics (like room rental and transportation)
$8,000 sponsors 10 families to attend
Sponsorship Benefits
Sponsors receive recognition in all documentation of the Summit, on the FVCA website, and are announced at the Summit. All
sponsorship levels are welcome and encouraged. Please contact trobinson@familyvoicesofca.org today for more information.”
Becoming a Sponsor
There are two convenient ways to sponsor the Summit:
1. Fill out a Sponsorship Commitment form and mail with a check payable to Support for Families of Children with
Disabilities (MEMO: FAMILY VOICES 2011 SUMMIT). Send form and payment to Tara C. Robinson, FVCA Manager at
1663 Mission St. 7th Floor, San Francisco, CA 94103.
2. Donate online by visiting www.supportforfamilies.org. Click “Donate.” Select “Family Voices of California” under
“Programs.” Include in Comments: “FAMILY VOICES 2011 SUMMIT.”
THANK YOU TO OUR 2010 SPONSORS
Family Voices of California gratefully acknowledges the financial support of the Maternal and Child Health Bureau and the Lucile
Packard Foundation for Children’s Health.
FAMILY VOICES OF CALIFORNIA |7

8. FAMILY VOICES OF CALIFORNIA
Tara C. Robinson, Manager
1663 Mission St. 7th floor
San Francisco, CA 94103
Phone: (415) 282.7494, ext. 123
Fax: (415) 282.1226
trobinson@familyvoicesofca.org
www.familyvoicesofca.org
8 | HEALTH SUMMIT 2010