Meet Leolinda Parlin, a woman of many “hats,” many talents, and a proven track record of getting things done. Leolinda is the State Coordinator for Family Voices of Hawaii, the Project Director of the Hilopa´a Family-toFamily Health Information Center (F2FHIC), and is a Parent Faculty for the Department of Pediatrics at the John A. Burns School of Medicine, in Honolulu. While her titles are impressive, it is the work that she does that is really exciting. Leo is an active family representative on the Medicaid Waiver Policy Advisory Council, and the Utilization Review Committee, charged with ensuring that individuals with developmental disorders and mental retardation have access to the resources they need. Because Medicaid Waivers are discretionary and not entitlement programs, the state has the responsibility of customizing support services on a case-by-case basis. Leo helped create new guidelines for children under the age of two.
Becoming Family-Centered in a Client-Centered System
In her work on the Utilization Review Committee, Leo brings the real-life family perspective to discussions. She looks at how the recommendations—which might look good on paper—actually fit into the life of a family needing the services. Until the change in guidelines for children under two, most of the cases were adults, not small children, so there were many resources that F2F representatives like Leo knew about that were unfamiliar to Medicaid case managers.
F2F representatives are also able to talk candidly with case managers about what it is like day in, day out, and at night with a child with complex medical needs. “That insight is so important,” says Leo. Leo and the other F2F members help the Committee see the whole picture of life in a family’s home, beyond the details of each individual child.
Who Better to Be the Ombudsman?
Another project with Medicaid that Leo is working on deals with the process of converting 40,000 remaining individuals in fee-for-service Medicaid to managed care. Thanks to the efforts of Leo and her staff, the F2FHIC will become the ombudsmen for the system, taking phone calls, advising individuals of their rights, helping people find the services they need.
When the new program was ready for roll-out, the Medicaid Agency planned to send out a letter to each family. Leo helped the professionals to see how impersonal this would be and suggested instead that they hold a family meeting so that F2F staff could “answer (questions) in a family way to explain how the new guidelines would affect them.” This helped create a partnership between the families and the professionals. Although the professionals were not used to working in this manner, they quickly realized its value and are more likely to have this kind of open meeting in the future.
Not Finger-Pointing, But Problem-Solving
Obviously, Leo’s ability to have this kind of influence and impact didn’t happen overnight. It took years of building a working relationship. “We offered to assist in things to help the process along. We shared the burden and the work—we weren’t just criticizing, we were willing to do the heavy lifting.” She adds, “We are at the table willing to work. We’re not finger-pointing, we’re problem-solving. We just jump in and say we will help out in the trenches. It builds camaraderie.”
Hawaii is a little unusual in that the population is smaller than other states, but the principles of making this kind of partnership work are the same. Nurture the relationship—and don’t be afraid of a little hard work!
Learn more about the Hilopa´a F2F HIC.
Thank you, Leolinda, for all your efforts!
Congratulations to Donene Feist, Family Voices of North Dakota, for being one of 10 recipients of this year’s Robert Wood Johnson Foundation Community Health Leader Award. Chosen from more than 800 nominations, Donene’s work with families with special needs in North Dakota has been honored—and rewarded with $125,000! Donene works tirelessly to ensure access to services for more than 20,000 North Dakotan children with special needs, many of whom are in families living below the federal poverty level. In a large state with a relatively sparse population, access to services often means traveling long distances—and extra costs. Donene is delighted to have won the award and will put the money to good use, saying that the families are “not looking for a hand out, they are looking for a hand to hold on to, to keep from drowning in this complex system.” For more information, read the RWJ press release or view the video.
Way to go, Donene!
The newly-published Family-Centered Care Self-Assessment Tools from Family Voices are designed as an opportunity for health care practices and families to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family-centered care. These tools include a Family Tool, a Provider Tool, and a User’s Guide. The User’s Guide provides a detailed set of steps to use the Family and Provider Tools. The Family Tool is designed for families, both individually and within family support and advocacy organizations, to increase awareness and knowledge of the specifics of family-centered care. The Provider Tool was created for health care settings to use in quality improvement activities and to support development of the first key component of a medical home as defined by the American Academy of Pediatrics — “provision of family-centered care through developing a trusting partnership with families, respecting their diversity, and recognizing that they are the constant in a child’s life” (AAP, 2002). This tool can be used to increase family satisfaction with the care setting and to increase its standing in the community.
An online feedback survey will soon be available to give input to help us to continue to improve these tools.
This delightful 12-month calendar features heartwarming photographs of members and friends of the Family Voices family, inspirational quotes, and space to keep track of your important dates. Please visit our online catalog to order your copies today!
The theme of the Family Voices' Gala is One Heart, Many Voices: Celebrating Families. As such, many creative ideas about celebrating our families have arisen from our Family Voices family! We wish to share these ideas with you and invite your participation.
Contact Rachel Rodriguez, (888) 835-5669 or visit our website to learn more.
Make your plans to attend the Gala! Tickets are available on the Family Voices 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.
Join Family Voices and Conni Wells in two upcoming topical calls on organizational development. RISKY BUSINESS II, on December 1 will examine the symptoms of risk and vulnerability within an organization and its leaders. Participants will screen their organization/leadership risk levels and begin guiding their organization away from risky behaviors. RISKY BUSINESS III, on December 8, will examine organizational and leader vulnerabilities and how to prevent them from interfering with the growth and sustainability of an organization. Participants will apply techniques and approaches to customize a plan for their organizations for protection from external and internal risk factors. Visit the Family Voices Topical Call Center to learn more and register for these FREE calls.
Compassionate Allowances Initiative from the Social Security Administration
Some people have medical conditions so severe that they obviously qualify for Social Security benefits—and the Social Security Administration has decided to make it easier for these applicants. The initial rollout of this program includes 25 rare diseases and 25 cancers, with plans to add more over time. According to SSA Commissioner Michael J. Astrue, this initiative will likely shorten the decision process from months or years to a “matter of days.” Visit the SSA website to see the list of 50 conditions.
Insuring Our Kids’ Future: The Importance of Health Insurance to Utilization of Pediatric Health Services
Not surprisingly, when children are uninsured, they are less likely to receive primary care services, including well-child visits, immunizations, and acute care encounters. This report from the Child Health and Development Institute in Connecticut examines this relationship in depth, recommending insurance for all children, as well as well-child visits free of co-pays. To read the full report, go to www.chdi.org.
Markle Foundation’s “Connecting for Health”
Imagine if patients had access to health information that would help them make informed decisions about their health care, communicate better with their health care providers, and that saved money in the process. The Markle Foundation’s non-partisan, public-private collaboration of more than 100 health care professions provides a consensus-based approach to the efficient use of Health Information Technology (HIT). For more information, go to: www.connectingforhealth.org.
Speaking of Health Information Technology: Healthfinder.gov
The US Department of Health and Human Services has released a more user-friendly version of healthfinder.gov. The site offers quick and easy information and tools to help people stay healthy and prevent disease. This new web site is particularly valuable for those of us working in the health promotion arena. Check out especially the Quick Guide to Healthy Living and “myhealthfinder” tools on the website at www.healthfinder.gov.
The American Public on Health Care: The Missing Perspective
Would it surprise you to know that the top three health care issues that matter most to the American public are cost, quality, and access? A close collaboration between Accenture, The Council for Excellence in Government, and the Institute of Medicine of the National Academies has produced the results of eight months of research in a report entitled “The American Public on Health Care: The Missing Perspective.”
Patient-Centered Medical Home: Building Evidence and Momentum
This new report by the Patient-Centered Primary Care Collaborative’s Center for Multi-Stakeholder Demonstrations looks at pilot programs across the country—their demographics, payment models, and project evaluation. Not surprisingly, the patient-centered medical home concept leads to cost-savings and increased satisfaction—a win-win situation for everybody. Read the report at their website. (Note: registration is required to read the report.)
Pediatric Perspectives and Practices on Transitioning Adolescents with Special Needs to Adult Health Care
When should health care providers begin planning the transitioning of adolescents with special health care needs to adult health care? What kind of services should be offered? Check out the new fact sheet published by the National Alliance to Advance Adolescent Health (formerly Incenter Strategies).
Resources on Sustainability:
Funding Announcements from AAP: Last month’s Friday’s Child had a link to the AAP’s funding information page. As a followup, here’s the link to the November Funding Announcement —see if it will help you find funding for your health project! If you would like to receive these monthly announcements, email docbi@aap.org.
Pediatric Heroes: Is your pediatrician your hero? Did he or she make a difference in your life, in your community? Tell the AAP your story.
Have you checked out the Maternal and Child Health Library Knowledge Paths yet? These topic-specific resource lists are treasure troves full of helpful websites, organizations, and general information. MCH recently released the new edition of the Domestic Violence website.
