Leolinda Parlin is no stranger to Friday’s Child readers—her work
as the Project Director of the Hilopaa Family to Family Health
Information Center (F2F HIC) in Hawaii was featured in the
November 2008 issue. Recently, she was a presenter on an
MCHB-sponsored conference call to discuss partnerships
between State Implementation D70 Grantees and F2F
HICs, speaking about the importance of families
working as partners with professionals to create
effective, responsive systems of health care. D70 grants
offer support to create inclusive, community-based
services for children and youth with special health care
needs. These services include six basic components: family/
professional partnerships, comprehensive care through a medical
home, access to adequate health insurance, early and continuous screening, easy use by families,
and transition to adult health care.
Leolinda described the value that has been provided by the family professional partnerships in
Hawaii, particularly with Title V and the Integrated Services grant. Families are a part of the D70
advisory group that includes Title V, Family Voices, the AAP, and the University of Hawaii’s
John A. Burns School of Medicine. Each partner brings strengths to this advisory table, but it is in
joining, the “braiding firmly” together, (which is the meaning of the Project title Hilopaa) of the
strengths of these diverse groups that delivers the power to the work of the projects.
Combining the D70 and F2F HIC projects provides the opportunity to start something, cultivate it,
and expand the implementation. Hawaii’s D70 project laid the groundwork for incorporating
developmental screening into EPSDT. Because of the strong partnership with Medicaid, the
Hawaii AAP chapter, the university training center, families, and Title V all emphasizing the
importance of developmental screening, physicians are now required to conduct these screenings.
Leolinda added, “We worked closely with the state on system design and training. We provided
training for the doctors, and made developmental screening a part of everything we did. If it
wasn’t for the work of the D70 partners working together, united in the front, leveraging our
agenda onto the state Medicaid program, we wouldn’t be where we are today.”
The family voice in partnerships like these has provided a greater awareness of the ramifications
of budget cuts. Families understand and are willing to work with budget cuts, but also help put
them in perspective. For example, when a budget cut resulted in 15% fewer services in the
Medicaid waiver, family members helped prioritize the services and suggest how to leverage the
available resources to lessen the impact of a necessary cut.
Leolinda described why there is strength in different voices working for the same cause and why each
perspective is so important. Because families are “in the trenches and know what it is really like,”
their perspectives bring a richness and on-the-ground view of family concerns and practical solutions.
Making Partnerships Work
A good partnership begins with inventorying the individual partners’
strengths and resources. The Rainbow Book, a resource of all programs
available to support families of children with special health care needs,
is a good example. Dr. Patricia Heu, Hawaii Title V Director, compiled
the book and families “brought the book to life” by providing specific
real-family examples in training sessions for family members, state and
agency partners. “We all use our strengths,” says Leolinda.
Partnerships like this benefit both families and the community. “When
we partner we can leverage our resources and we can do more work.
We share the burden and use other people’s strengths to advance our own agenda.” Partnership is
about working together and bringing initiatives to the table and it’s learning by example. “Adult
learners learn best from example. Many adults learn best from feeling, touching, seeing. When
families are able to teach, they are able to paint a vivid picture and bring stories to life.”
Families are in a key position to have a strong voice legislatively—they are credible in ways that
providers would not be. When families partner with decision makers around system issues on the
policy and practice level, not only do the children benefit, but the providers and policy makers
understand the issues more deeply. “Families are our constant in the Hilopaa and Integrated Services
projects—we’re everywhere and will continue to be everywhere. Families transcend administrations.
People listen to us differently than they do physicians or other health care professionals.”
Louisiana F2F HIC and Title V: Taking the Office to the Community
The LA Family to Family Health Information Center, at Bayou Land
Families Helping Families, and Children's Special Health Services
(CSHS, LA's Title V program) working in partnership, are
developing strategies to bridge the gap in services available
particularly in rural communities. CSHS employs parent liaisons in
each of their clinics, and working with F2F parents, they are
reaching more families of CYSHCN with the information and
resources they need to access family-centered, culturally appropriate, community based services as
close to home as possible. Dr. Susan Berry, Director, CSHS, says, “The family component is what
makes us family-centered.” She adds that one of their underlying principles is to have “families at
the table in order to have family-friendly policy.”
Kim Detillier, Executive Director of Bayou Land Families Helping Families, describes how their
clinic is taking the issue of access to services seriously—by bringing the services to the people.
People in the rural areas that the Bayou Land Center serves often lack transportation and
telephones, so getting to the regional center is a challenge. “We are planning to take the office to
the community! We’re going to have a day where we go into one of the seven parishes in our
region—the whole office will be available. If they can’t come to us, we’re going to them!” Each
parish will be visited in this way.
This traveling cadre includes educational specialists, F2F Health Information Center specialist,
Parent Liaisons from CSHS, and others. “If the family has a special issue—we’ll all be there. If a
child has a problem with an IEP, they don’t have to call the office for another appointment, that
person is going to be right there!” Representatives from LACHIP and Medicaid will also be onsite
to help families fill out applications for the Family Opportunity Act Medicaid Buy-In Program.
Kim’s enthusiasm for what she calls her
“Dream Baby” began when her area was
devastated first by the “twin sisters”
Hurricanes Katrina and Rita, and then again
by the “twin brothers” Gustav and Ike. After
spending weeks working in the shelters
helping families in need with everything from
toothpaste to replacement copies of driver’s
licenses and birth certificates, she realized
how many families were in need of services
her center could provide. Her staff has been very cooperative about spending these days in the
community.
Bayou Land’s mobile office program will serve as a pilot program, and if successful, may be
expanded to other areas. To Kim, it’s just a matter of doing it. “Let’s not talk about what we can’t
do, let’s talk about we can!”
Grace Williams Joins AMCHP Staff
Grace Williams, formerly a Health Care Coordinator at The
Parents' Place of Maryland (PPMD) and parent leader with
Family Voices of Maryland, has recently joined the AMCHP
staff as the Senior Program Manager for Children with Special
Health Care Needs. Grace, mother of four including twin teenage
girls with autism and a strong advocate for families, brings her
experience in working with the Maryland Title V and Medicaid
programs while at PPMD, and her service on numerous
developmental disabilities commissions and councils in
Maryland. Grace has been involved in AMCHP for several years,
as a family scholar, family delegate to AMCHP, and member of
the Family and Youth Leadership Committee.
Congratulations, Grace!
Last month’s Friday’s Child featured efforts by some states’ Family Voices communities to provide input to President Obama about healthcare reform. In addition to North Carolina, Utah, and Washingon, DC, other meetings are being held around the country to discuss this important topic. President Obama believes that modernizing the American health care system must address:
Obama recognizes that many Americans have both stories to tell about the health care system, as
well as ideas for positive change; these public meetings provide forums for discussion and input.
Families with children and youth with special health care needs (CYSHCN), not surprisingly, have
plenty of stories to tell about availability, affordability, and access to comprehensive care. Beth
Dworetzky, from Massachusetts Family Voices, commented about their recent forum, “Attendees
agreed that healthcare that works for individuals with special health needs works for all individuals,
while the reverse is not always true.” There is a greater need to see the child with special needs—
and his or her family—from a larger perspective.
One discussion topic at the Massachusetts meeting was
about prevention services, such as mammograms, flu shots,
and screenings for high cholesterol. As Beth explains,
“While these screenings are important for individuals with
special health needs, prevention services must be more
comprehensive. Counseling and equipment are examples of
prevention services for individuals with special health
needs. For example, many children with complex health
needs experience bouts of depression when they are older.
If counseling was a preventive service, it would help avoid
the number of prescriptions needed for mood disorders and
depression. Additionally, if an individual does not have the
correct communication device, braces, or wheelchair, he or
she can’t be out in the world in a productive way.”
Diana Autin, from New Jersey’s Statewide Parent Advocacy Network, raised this important
question, among many others, that came out of their forum, “How can we help healthcare
professionals understand and implement the concept of a ‘medical home’ for children with special
healthcare needs, so that their healthcare services are coordinated and so their families do not have
to spend so much of their time coordinating their healthcare?”
Families will continue to share such stories and information with Title V and other key
stakeholders in their states as the important discussions about health care reforms take place at both
the state and national level in the coming months. For a more in-depth look at some of the Family
Voices’ network of public meetings on this important topic, visit our website
The Family Voices National Conference is slated for May 3-5, 2009 at the Marriott Wardman Park Hotel in a Washington, DC. The National Conference will open with a reception on Sunday evening, followed by a full day of activities on Monday. The conference will end on Tuesday at noon. KASA, Family Voices Board, Regional Coordinators and Regions, etc. are discussing pre- conference meetings and F2FHICs and D-70 Integrated Services grantees will add meeting time following the conference. For volunteer opportunities and more information regarding the conference, please contact Family Voices' Executive Director, Sophie Arao-Nguyen, (888) 835-5669.
Families in Program and Policy (FiPPs) Reports
Summary of results of interviews
conducted with state Title V MCH
Directors regarding participation of
families in their department
program and policy activities—
MCH and CSHCN.
Tips for family leaders to develop or renew partnerships with Title V programs.
First Steps for Family
Leaders
Tips for family leaders to develop or renew partnerships with Title V programs.
The Title V Information System provides a wealth of information on state Title V programs, including budget and program data, national and state performance data, needs assessments, state narratives, and more.
Online, searchable history of maternal and child health in the U.S., with in-depth modules on topics such as MCH 101, MCH Systems of Care, Infant Mortality and MCH Performance and Accountability.
Planning for Cultural and
Linguistic Competence in State
Title V Programs…
A checklist to help State Title V programs in incorporating cultural and linguistic competence into all aspects of programs serving children and youth with special health care needs and their families. The checklist is intended for use (1) in strategic planning, (2) in the design and delivery of services and supports, and (3) for quality assurance and evaluation.
AMCHP Legislative Briefing
& Advocacy Training
A presentation, recording, and ASK letter from a recent AMCHP training to help you learn about the current environment for health funding, how to advocate for MCH, and AMCHP Title V Advocacy Materials.
A 5-page handout that highlights the key components of Title V and its legislated interaction with Medicaid and SCHIP.
The Family Voices National Conference is slated for May 3-5, 2009 at the Marriott Wardman Park Hotel in a Washington, DC. The National Conference will open with a reception on Sunday evening, followed by a full day of activities on Monday. The conference will end on Tuesday at noon. KASA, Family Voices Board, Regional Coordinators and Regions, etc. are discussing pre- conference meetings and F2FHICs and D-70 Integrated Services grantees will add meeting time following the conference. For volunteer opportunities and more information regarding the conference, please contact Family Voices' Executive Director, Sophie Arao-Nguyen, (888) 835-5669.
