F2F: Oregon Family-to-Family
Health Information Center
The Oregon Family-to-Family Health Information Center provides
information to families who are navigating the complex world of special
health care needs. We are family members ourselves, who have firsthand experience raising a child or youth with a chronic health condition,
developmental delay, disability, or emotional/behavioral challenges.
CSHCN in OR1
Ø119,187 children (13.7%)
Ø42,944 children have inadequate
Ø34,542 children have conditions that
consistently affect their activities
Ø40,630 do not receive familycentered care
HIGHLIGHT: Regional Family Gatherings in
Rural, Latino, and Slavic Communities
Since 2011, the Oregon Family-to-Family Health Information Center has
conducted 31 Regional Family Gatherings throughout the state to exchange
information, ideas, and support. These gatherings have taken place in rural communities and with Latino and Russian
families in both metropolitan and rural Oregon.
In order to do this work, the OR F2F HIC has developed a unique “map” of the state that identifies key groups who
will partner with us to offer these gatherings in locations that are familiar and welcoming to families. Our map, a 5’ x
3’ map of the state pinned to a wall in the office, was first populated with tags representing every known parent leader
in the state. Using word of mouth, we contacted dozens of groups, like the Autism Society of Oregon and The Arc of
Oregon, as well as groups that meet informally in churches and playgrounds, and everything in between. We included
parent groups from the health, developmental disabilities, and mental health domains, as well as those focused on
advocacy, recreation, or other topics.
Gathering the names of contact persons from agencies and organizations that touch families’ lives in some way, we filled
in our map and built a database. Now, for almost each of Oregon’s 36 counties, we have identified a network consisting
of family groups and helpful professionals such as Disabilities Coordinators at Head Start, Early Intervention Teachers,
Title V Nurse Care Coordinators, Community Developmental Disabilities Case Managers, and many others. In the most
rural part of Oregon, even the delivery drivers of home medical equipment have participated in our network.
Information about these organizations is provided specific to the region where the Family Gathering is taking place.
We connect with an organization to host the gathering and they locate a meeting place, circulate publicity, organize
registration, and let us know a focus for the meeting. Typical topics include: Resources and More, Becoming Your
Child’s Health Advocate, and Planning for a Healthy Transition. We bring light refreshments and plenty of resource
materials. Groups are generally between 3 and 15 participants. As a result of these gatherings, families connect with
one another and learn about support and health-related programs. Through the meetings we also are able to provide
our state’s Title V CYSHCN program with feedback about families’ experiences. During the launch of our state’s Health
Insurance Marketplace, these Regional Family Gatherings were instrumental in providing information about the ACA
and in clearing up myths and misconceptions. One family member from a frontier county remarked: “I don’t think we
really knew what Obamacare was until you came out here.” She left the event with a supply of explanatory brochures about
Cover Oregon and Health Care Reform to distribute to her friends.
Total Families Served:
IMPACT: Service Navigation
Families rate the usefulness of the support/information/resources they received
from the OR F2F in helping them find and/or learn about community services
(primary health care, intervention programs, translation services, etc.)2
Total Professionals Served:
1.5% Not Useful
1.5% Somewhat Useful
44.6% Very Useful
41.5% Extremely Useful
Oregon Family-to-Family Health Information Center • 707 SW Gaines Street CDRC, Portland, OR 97239-3011
Phone: (503) 494-0865 • Toll-Free: (855) 323-6744 • Fax: (503) 494-2755 • Website: http://www.oregonfamilytofamily.org
Contact: Tamara Bakewell, firstname.lastname@example.org
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 04/03/2014 from www.childhealthdata.org.
FY2013 F2F data represents families and professionals served through one-to-one contact, training, and broader outreach from June 1, 2012 through May 31, 2013.
*National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health
website. Retrieved 04/03/2014 from www.childhealthdata.org.
Helping Families of Children/Youth with Special Health Care Needs & the Professionals Who Serve Them