In keeping with the goal of funding Family-to-Family Health
Information Centers (F2F HIC) in all 50 states by 2009, MCHB
has awarded grants to 11 new states, bringing the total to 41 and
counting. These newly funded F2F HICs, developed in strong partnership with Family Voices in
their respective states, will begin their 3 year grants on June 1, 2008. Congratulations to the newly
funded centers at:
Full funding for F2F HICs officially began with the authorization by the Family Opportunity Act
(FOA) signed into law in 2006, (as a part of the Deficit Reduction Act), and is provided through
HRSA Maternal and Child Health Bureau. The FOA provided an official recognition—backed by
funding—that often the best resources for families of children with special health care needs come
from other families who have “been there, done that.”
The path to finding quality health care and related services and supports for CYSHCN is rarely
clear and well defined for a family, and often characterized by mountains of red tape. Knowing
where to start is frequently a challenge. F2F HICs, staffed by knowledgeable parents, provide
invaluable help to families through information, education, training, support and referral services.
The Family Voices National Center for Family/Professional Partnerships (NCFPP) provides
technical assistance, training, and connections among F2F HICs and with other partnering
organizations. Some F2F HICs are independent family run organizations while others are part of
broad based non-profit agencies or organizations with a strong commitment to children and youth
with special health care needs.
For more information about NCFPP and F2F HICs, check out the Family Voices website.
Family Leader Meetings . . . Making a Difference
Family leaders from around the
country are “making a difference” as
evidenced by the wealth of
information and resources shared at 8
face-to-face Family Leader meetings
bringing together family leaders from
41 states and held over the past several
months in multiple locations around
the country. Leaders from 5 additional
states will be meeting in Texas this
month. Funding was made available
for these meetings by the Maternal
Child Health Bureau (MCHB) through
the Family Voices National Center for Family Professional Partnerships (NCFPP) along with
funding from other sources. Multiple state and local partners, including staff of Title V programs,
children’s hospitals, Medicaid programs, and many others participated in these meetings. Family
Voices and Family-to-Family Health Information Centers (F2FHICs) planned and organized each
meeting and report many benefits from these opportunities to learn from each other and from their
partners. In next issue of Friday’s Child, Family Voices will share exciting findings from these
meetings. Kids As Self Advocates Seeking Task Force Members
Kids As Self Advocates (KASA) is looking for disabled youth, between
the ages of 12 and 18 to serve on an all-youth task force to give advice and
opinions to the KASA Advisory Board and staff about what information
and training youth with disabilities need. The Task Force will meet
through phone conferences and work on all aspects of youth-led projects.
If you or a youth you know is interested in applying for the KASA Task Force, please contact
Naomi Ortiz, KASA Project Director at: ortizn@fvkasa.org or for any questions please call:
(785) 273-3398. You can download the application from the KASA website.
Application due date: June 13th, 2008.
Diana Autin (NJ),featured panel participant
Diana Autin, Executive Co-Director
of Statewide Parent Advocacy
Network (SPAN) of NJ and Family
Voices Board and Network
Member has been invited to
participate in an upcoming event
sponsored by the Eagleton Institute
of Politics at Rutgers University.
This community forum, State
Government and Immigrant
Integration: Goals, Models and
Programs, will bring together
directors of state immigrant/
refugee service bureaus and
experts on immigrant integration
to consider state government
responses to changing
demographics and community
needs. Diana Autin, as a member
of the Board of the NJ Immigration
Policy Network and a dynamic
advocate for children’s health, will
share her expertise on families of
children and youth with special
health care needs from diverse
cultures.
Congratulations Diana Autin!
Ernst & Young, an internationalaccounting and professional
services company, is the recent
recipient of an award for their
parent network program, which
provides outreach and support to
their employees who have children
with special health care needs.
Family Voices worked closely with
Ernst & Young to design the Parent
Network. These efforts to raise
awareness and address issues
among employers of the needs of
families of CYSHCN were
undertaken as part of the
Employee Benefits Project, initiated
by Dr. Jim Perrin of Mass General
Hospital for Children. Ernst &
Young is very excited about their
Parent Network initiative and
gives a lot of credit to Family
Voices. Many Family Voices
Network Members participated in
the early phases of this Ernst &
Young initiative. It’s great to see
this prominent business leader
recognized for their best practices
for our families!
Also as part of the Employee
Benefits Project, Family Voices
worked to include questions on
supports to employees (i.e.,
families!) of children with special
health care needs in an annual
survey conducted by Working
Mother Magazine. This survey is
used to rate the work environment
of the Top 100 Companies. Last
year one such question was
included; this year, four. We hope
this will encourage discussion of
issues for CYSHCN to become a
regular part of the conversation in
workplace settings.
Learn more about the Employee
Benefits Project on the Family Voices website.
Congratulations to our friends and partners at the National Center for Cultural Competence, led by Director Tawara D. Goode, MA, for their recognition during National Minority Health Month- 2008 by Health Power for Minorities. Other honorees included David Sather, MD, PhD, Director of the Center of Excellence on Health Disparities, Morehouse School of Medicine and the 16th US Surgeon General.
Department of Health and Human
Services (HHS) maps out the health
goals for the country. Plans are
already underway to begin the
task of identifying the topics and
specific goals and objectives
deemed important enough to
become national priority.
This spring, HHS has been
sponsoring 6 public meetings
around the country to encourage
people to give input on this
important process. It is also
possible to send in written
comments as well. This is a perfect
opportunity to make sure that the
policy makers keep the needs of
families and CYSHCN.
For more information about the
process, the meetings, and to
register written comments, please
go to the Healthy People 2020
website
.
Bright Futures: Family Matters-- Spring 2008 Newsletter Now Available.
The current issue of Bright Futures: Family Matters focuses on
parent leadership—roles, opportunities, and avenues for training.
From the opening article:
When parents speak out on behalf of their own child, the changes they request often help improve programs and services for all children. Riding the wave of a successful parent/professional partnership, or occasionally getting caught in the undertow of a failed one, may be the incentive to continue to work to change and improve services and systems. When parents take on this role, they are LEADERS!Read more about various leadership roles parents take on—sometimes out of necessity rather than choice—as well as a listing of leadership training materials from such sources as the Johns Hopkins Bloomberg School of Public Health, the Minnesota Governor’s Council on Developmental Disability, and the W. K. Kellogg Foundation. The quarterly newsletter is available on the Family Voices Bright Futures for Families website.
Family Matters Promoting Health And Wellness For Children With Special
Health Care Needs Family Booklet Now Available!
Family Voices has published a NEW booklet designed to give practical tips to help families eat
nutritiously, incorporate physical activity into daily routines, and limit screen time (TV, video games,
computer). While the booklet is geared specifically for families with children with special needs,
most of the tips and suggestions are applicable to all families—including adults. Suggestions are
“doable” and include lots of websites for more information.
The booklet is based on findings from a three-year research project, conducted by Family Voices in
partnership with Tufts University School of Medicine, Public Health and Family Medicine, and
funded by the Centers for Disease Control and Prevention. The project combined focus groups, an
online survey of over 800 families, and mentoring by Mentor Parents. Recommendations for parents
were based on the Bright Futures Guidelines for Health Supervision of Infants, Children, and
Adolescents, the US Department of Health and Human Services Healthy People 2010 Goals, as well
as ideas from nutrition specialists and families themselves.
Copies of the booklet are available for $3 from the Family Voices National Office, 2340 Alamo SE,
Suite 102, Albuquerque, NM 87106, phone 505-872-4774 or toll free at 1-888-835-5669.
“Families, Clinicians, and Children and Youth with Special Healthcare
Needs: A Bright Future” . . . Family Voices article in April 2008 Pediatric
Annals Journal
The second of a two-part issue of the Journal of Pediatric Annals, featuring the newly revised Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents, includes an article written by Family Voices leaders Polly Arango, Betsy Anderson, and Nora Wells. The article describes the role of families in the health care of their children with special needs. Beginning with an historical perspective and a discussion of the need for ongoing well-child care for all children, it also describes the role of the family in a Bright Futures’ approach that includes families as vital partners in their children’s health:
Families expect their child’s clinicians to be experts in their fields. We count on them to know what they are doing, to be honest about an unknown outcome, to have access to outside expertise when needed. Physicians count on families to openly share information, concerns, and skills as decisions are discussed, peer to peer, before important decisions are made. This team decision-making implies that all parties share the same information and will be honest about what they can and cannot do. It also implies that families will provide honest feedback if we are not able to follow a treatment or decide to explore further treatment options. This is true whether the mutual decision is about a therapy, a delicate surgical procedure, or an effort to serve healthy after-school snacks. (p.219)
Contact the Family Voices National Office (888) 835-5669 for a copy of the article.
CMS Presents Satellite Broadcast: “Health Implications Of Caregiving”
The Centers for Medicare and Medicaid Services (CMS) is hosting a satellite broadcast on June
25th, from 1:00-2:30pm EST, entitled “Health Implications of Caregiving.” The broadcast will
include an open microphone question and answer period. It is important that caregivers of
children and youth with special health care needs be included in this discussion, not just the
caregivers for the elderly. Check out www.blsmeetings.net/caregivers for more information and to register for this event.
Sooner SUCCESS Family Partnership
Families sometimes express needs that reach beyond their
communities. This is why the Sooner SUCCESS Family
Partnership involves families at the State, Regional and Local
Level. The Family level is the most critical to the program and all
stops are pulled out if a family expresses a need for a service that
doesn’t exist within a community. Learn more about Sooner
SUCCESS (State Unified Children’s Comprehensive Exemplary
Services for Special Needs), a program of the University of
Oklahoma Child Study Center at the University of Oklahoma at
their website.
