As the earth experiences rebirth in spring so,
too, has Family Voices. Over the past year,
following a thoughtful course outlined in the
Family Voices Strategic Plan, staff, board
members and parent leaders have worked to
address all four directions of the strategic plan—
Infrastructure; Policy; Cultural Competence;
and Funding.
Family Voices has begun to build a strong,
dynamic and effective infrastructure that
includes State Affiliate Organizations,
Individual and Organizational memberships, and
an expanded technical assistance team including
field coordinators and our policy team. Please
watch our website for more information about
membership opportunities. Our DC-based Policy
Team is working to be sure that families have
the information and resources needed to engage
in critical policy discussions on health care taking place around the country. Guided by our
funding plan, Family Voices continues to work to identify and develop ways to sustain our
collective work so that we may realize our vision—every child and youth with special needs
receives family-centered care. The Cultural Competence Committee did preliminary work
with the Board of Directors in October 2008. Tawara Goode of the National Center for
Cultural Competence guided the creation of a framework for putting culturally and
linguistically competent values into policy and practice.
Strong connections and partnerships contribute to our continued success. On February 23rd,
we held the Family Voices Gala in conjunction with the AMCHP annual conference. We
were delighted to meet with our friends and allies, and to honor those who have contributed
so much to our organization. As we convene the Family Voices 2009 National Conference
this month, we’ll connect with and learn from other dedicated parent leaders, providers and
partners, and recommit to our mission of achieving family-centered care for all children and
youth with special health care needs and/or disabilities. We look forward to many of you
joining us!
New Publication on Cultural Competency
Growing Your Capacity to Engage
Diverse Communities by working with
Community Liaisons and Cultural
Brokers is a 20-page booklet that
describes working with community
liaisons and cultural brokers as an
approach to family and community
engagement. Information included
is grounded in the knowledge and
experiences of the FV network of
family leaders.
Family Voices New KASA Pocket Guide
KASA’s newest pocket guide,
How to be Involved in a Board or
Council: Roles and Responsibilities, is
now available. This pocket guide
was developed and written by
youth who have served on boards
and councils successfully and can
serve as a companion piece to the
KASA Youth as Leaders manual.
Order both the How to be Involved in a Board or Council: Roles and Responsibilities and Growing Your Capacity to Engage Diverse Communities: by working with Community Liaisons and Cultural online from the Family Voices catalog.
Children’s Arts Program Performs for Utah Legislators
On the last day of the 2009 legislative session, Utah legislators were
treated to an outstanding performance by children participating in
Kindred Spirits, a non-profit organization that helps empower children
with disabilities through experience in the arts. With instruction from
Sal Jansaan of the Salt Lake Community Action Program and in
partnership with Family Voices of Utah, Kindred Spirits introduced
children to the beauty and vitality of Polynesian arts. The children’s
performance of two Polynesian dances wowed the Senators.
Alice Perreault, the director of Kindred Spirits, believes that “in these
times of economic struggles we can still feed our spirits by
considering the beauty and dedicated work within our own
communities.” Visit the Kindred Spirits website to learn more.
Flooding and the Aftermath in North Dakota — Help Still Needed
Serious flooding—and its aftermath of strain on
people and community services—continues in North
Dakota reports Donene Feist, Executive Director of
Family Voices of North Dakota (FVND). Many
families with special health needs have contacted
FVND looking for assistance -- cribs, special medical
equipment, help with car repairs, warm, dry places to
stay, and ongoing emotional support. Mobilizing
FVND, Donene reached out to her network of
families, who, in turn, actively sought out support from as many other venues as possible. As
a result, FV of ND has become a clearinghouse of information and resources from families
willing to share such resources as special adaptive equipment or a spare room.
You can help families in ND with a donation:
Donene adds:
“Thanks to all who have donated funds…. the families are very
grateful. Thank you on their behalf and mine. Even a little smile
in their loss makes a day brighter.”
FAMILY-TO-FAMILY HEALTH INFORMATION CENTERS (F2F HICs)
Funding for the Family-to-Family Health Information Centers is provided through Federal
Fiscal Year 2009 by the Family Opportunity Act (part of
the Deficit Reduction Act of 2005). NOW we need
Congress to appropriate money for FY 2010 in order for
F2F HICs to continue. We are requesting an increase for
FY 2010 to provide additional funding for states and
territories, needed dollars for federal administration and
additional opportunities for TA, mentoring and in-person
support. However, it is expected that this will be a “lean”
year for appropriations (actual allotment of money), so
family leaders are mobilizing around the county to let Congress know how important the
F2F HICs are to CYSHCN and their families. Contact the policy team -- Brooke Lehmann or Janis Guerney to learn
more, and to find out how you can help.
HEALTH CARE REFORM
Family Voices’ Public Policy Team has been active in Capitol Hill discussions concerning
health care reform, participating in discussion groups with key staffers to make sure that
they do not overlook the needs of CYSHCN and their families. Some of the relevant
congressional committees are gearing up to take action soon, but at this time, there is
nothing “on paper” to which advocates can respond. Therefore, Family Voices will
continue to convey to Congress its general principles for health care reform, including the
need for care is universal, comprehensive, community-based, coordinated, and familycentered.
SPEAK NOW FOR KIDS IN HEALTH REFORM CAMPAIGN
Family Voices has signed on as a supporter of the Speak Now for Kids in Health Reform
Campaign, a new national campaign sponsored by the National Association of Children’s
Hospitals (NACH) to raise the visibility of children's needs in the national health care
reform debate.
As focus on the issue has grown in the past month, one thing has become exceedingly clear:
If we don't speak up, we won't be heard. There are no better voices for what children need in
health care reform than those of the parents, family members, physicians and others who
work with children and care about their health. Visit the NACH website to read more about this campaign to be
launched in early May.
Moving Patient-Centered Care towards
Family-Centered Care
In the adult health care world, the
patient-centered care concept focuses on
the relationship between individual
patients and their providers, particularly
in primary care settings –urging
improved communication, culturally
competent coordinated care, and use of
electronic health records. The
importance of a patient’s family as part
of the health care team, the role of
community resources, and the potential
for patients and families to be advisors are less frequently included in discussions.
Nevertheless, this new spotlight on patient-centered care in adult healthcare has brought the ideas of family professional partnerships to a much bigger arena.
Family Voices recently interviewed Dr. Richard Antonelli, of Boston Children’s Hospital, who
has been actively engaged, along with Dr. Fan Tait of the American Academy of Pediatrics, in
sharing the perspective and experience of the pediatric community with a major adult advocacy
initiative, the “Patient-Centered Primary Care Collaborative (PCPCC).” The PCPCC has
vigorously engaged in defining and garnering support for patient-centered care concepts.
“There is (now) broad endorsement within the medical community that the health care system in
the US must evolve… There is a recognition that patients and families need to be part of the
solution… We need strategies that integrate families and youth as advisors in both health care
design and quality improvement…In the pediatric community we have decades of experiences
(with these partnerships) both in the family and provider community…” Antonelli said.
Moving patient-centered care towards family-centered care gained momentum recently at a
stakeholders meeting of the Patient Centered Primary Care Collaborative (PCPCC) on April 28.
A new set of consumer principles for the patient– and family-centered care, developed by the
National Partnership for Women and Families, was endorsed by 24 leading national consumer
groups, including Family Voices.
Antonelli encourages families, youth and young adults to “Step up and say what it is you
expect. Do everything you can to raise the expectation” that the tools, methods, and
techniques developed within the pediatric model of medical home are included in this
movement within adult health care and health care reform.
Learn more about opportunities to participate in the PCPCC at their website.
100 Days/100 Voices Campaign
The Annie E. Casey Foundation is
marking President Obama’s first
100 days in office by asking
concerned citizens to tell them—in
100 words or less, or a video clip
lasting no more than 2 minutes--
what is the most important thing
that the Obama administration has
done for children and families
during this first 100 days? What
should be next on the agenda? And
why is this issue so important?
The Foundation website will feature
selected photos, videos, and emails.
Go to their website to add your voice.
Birth Defects and Developmental Disabilities Website
Established by the Children's Health
Act of 2000, the National Center
on Birth Defects and Developmental
Disabilities (NCBDDD) at Centers
for Disease Control and Prevention
(CDC) is dedicated to helping
people live to the fullest. With that
goal in mind, they have built a comprehensive
website focused on
information and resources for
people who are especially
vulnerable to health risks - babies,
children, people with blood
disorders, and people with
disabilities. Check out these topics:
Epilepsy and Your Child
A new website, Epilepsy and My
Child, has been designed for
parents with input from parents.
This website contains a wealth of
information for families, including:
There are some great tips on how to have an open, positive discussion with your child about epilepsy.
More Resources on Epilepsy
Project Access oversees
demonstration projects in eight
states focused on early detection,
treatment, and seizure control for
children and youth residing in
medically underserved areas. If
successful, the activities conducted
under this initiative will spread to
other communities across the United
States, providing broader, national
significance.
From the Genetic Alliance website: The 4th call in the AAP’s Medical Home Implementation Teleconference series is scheduled for May 21st at 1:00pm EDT. This call will focus on Role of the Medical Home in Family-Centered Early Intervention. Space is limited. Click here to pre-register.
Family Delegate Fundamentals
fact sheet describes the AMCHP
Family Delegate roles and
responsibilities in supporting
families and programs, and help
for states in how to identify
potential delegates.
