February 2011

February 21, 2011

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Feature Story: Legacy of Leadership

Family Leadership in the States: Family Leadership in Rhode Island: 25 Years and 300 Parent Consultants Later

Legislative Corner: Update from Washington

From Our Partners:

News, Resources & More from Family Leaders:

Feature Story: Legacy of Leadership

by Sophie Arao-Nguyen, Ph.D.

Polly Arango and Dr. C. Everett Koop at 2007 Family Voices GalaAs we approach our 2011 gala celebration on February 14, in Washington DC, we honor the Legacy of Leadership in children’s health care that has played such a formative role in the achievement of policies and programs to meet the needs of our most vulnerable population – children with special health care needs.

Since the enactment of Title V in 1935, public health leaders in Maternal and Child Health have embraced the role to “serve all children” and to develop “standards of care and protection which shall give to every child a fair chance in the world.” Under visionary leadership within MCHB partnering with  Dr. C. Everett Koop, US Surgeon General from 1981 to 1989,  these “fair chances” for children with special health care needs gained national attention.  In his Surgeon General’s Report, Dr. Koop issued a call to action to improve access to care and the quality of life for all children with special health care needs and their families, including community-based service systems and adequate healthcare financing.

Dr. Koop exemplifies the leadership qualities found in many of our colleagues at MCHB – individuals who chose a selfless career in public health; individuals who passionately pursue the mission of optimum health care for children; individuals who engage partners and motivate them to achieve this mission; and individuals who work to make families true partners in decision–making.

We also honor the legacy of family leaders who, having been thrust into the agonizing reality of caring for a child with special health care needs, make that same conscious, selfless decision to advocate for all children, like Polly Arango, who 20 years ago mobilized family leaders across the country to fight for optimum health care for children.  Because of Polly and other leaders, the family voice is now heard, respected, and sought-after in stakeholder discussions in every state; because of family leaders, families can now get help from Family-to-Family Health Information Centers (F2F HIC)in navigating community resources; and because of family leaders, health care reform in 2011 will include the needs of families of children with special health care needs.  As a leader, Polly was passionate and determined, but her most important legacy was to inspire others.  “As a leader, you have a responsibility to take your leadership experience and skills, your dedication to children and families, the tools and information you have gained, and make a difference  . . .  We can improve things where we live, in our own homes, neighborhoods, communities, towns, counties.”

How incredibly lucky we are to have had these leaders.  As they have done, we too, can make a difference!

Family Leadership in the States

Family Leadership in the States


Family Leadership in Rhode Island: 25 Years and 300 Parent Consultants Later by Bill Hollinshead
In the 1980's, Merle McPherson helped us all make family centered care a core principle of Title V.  Then RI Department of Health met two formidable parents...insisting that their complex kids c/should live at home.  Together, we got a Medicaid waiver and learned about family centered community care...and the Division of Family Health began to learn about shared leadership with families.  Soon we had enlisted a few parents as volunteer Parent Consultants (PCs) and partners in a regional collaborative project, New England SERVE. 

In the '90's the State Systems Development Initiative helped us pay early PCs to do outreach, program development, and evaluation in WIC, the Lead Program, immunization, and elsewhere in MCH.  We “institutionalized” 26 Parent Consultants in a contract with SERVE (1996), which gave them real support, training, and career paths.  Since 2000, the Rhode Island Parent Information Network (RIPIN), also home of the Rhode Island Family-to-Family Health Information Center, has managed the PC contract, now including many program and practice assignments for 50+ Parent Consultants, funded by nearly $1,000,000 of Title V, MCH program, and Medicaid funds.

After more than 2 decades, there are more than 300 current and former Parent Consultants.  They've made huge differences in the priorities, performance, and public perceptions of RI programs and policies.  Many PCs now work as paid members of community care teams and in other direct contact roles.  Many are still active and effective voices for family-centered, community-based, culturally competent, coordinated care in the state...including Dawn Wardyga, former Parent Consultant, and Director of Family Voices/RI Family-to-Family Health Information Center at RIPIN, who was nominated last week to serve on Governor Lincoln Chafee's Healthcare Reform Commission.

We've learned that it isn't easy to be a Parent Consultant, or to work with one!  But it's good for all of us.  PCs address barriers and problems, change attitudes, and become effective advocates.  PCs often don't fit smoothly into a strong stable bureaucracy.  Mentoring is real work, and not usually paid.  PCs need to tell their own stories, then quickly move beyond to others' needs and policy concerns.  Parent Consultants give RI 300 diverse faces and voices to help accomplish Title V's mission of family-centered community-based culturally competent coordinated care for all.

Rhode Island's long investment in Parent Consultants has paid handsomely.  Families are much more likely to have the help and resources to raise their children, in a much stronger and more responsive family health system.


Legislative Corner

Legislative Corner

Washington Update
Family Voices Policy Team provides these latest updates from Washington:

To the surprise of no one, and the dismay of many, the US House of Representatives voted January 19 to repeal the Healthcare Reform Law passed last year. The vote of 245-189 represented a solid Republican vote for repeal, with 3 Democrats—all of whom had voted against the law last year—joining in. This vote is indicative of the makeup of the new 112th Congress, with the House now having a Republican majority, and all committee chairs are now Republican.

The Senate still has a Democratic majority (including Independents who caucus with the Democrats), but it is now much slimmer (53-47). That’s enough of a majority to ensure that IF the vote comes up in the Senate, the repeal will not survive—and President Obama has promised to veto any repeal legislation that crosses his desk.

Republicans argued that the law would raise taxes, increase spending, and eliminate jobs.
Democrats made a motion to require a majority of House and Senate members to forgo federal health benefits for the repeal to take effect—noting the hypocrisy of those who would oppose increasing health insurance for ordinary Americans but taking full advantage of benefits themselves. The motion was defeated as well.

A full article on the House vote can be found at here.
So what does this mean? There is still work to be done on health care reform. Our legislators need to understand the health care financing needs of CYSHCN. Visit the Families USA website, and in particular their Health Care Reform Central site, which provides resources related to health care reform including suggested activities within your own state, helpful statistics, as well as explanations of legal processes.

If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.


From Our National Partners

Catalyst Center : The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State PolicymakersCatalyst Center: The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers
The Catalyst Center and the National Academy for State Health Policy have released a new report to help state policymakers understand how the Affordable Care Act (ACA) impacts children with special health care needs.  Specifically, this paper examines ACA provisions that can contribute to achieving the three major coverage goals for CSHCN: universal, continuous coverage; adequate coverage; and affordable coverage. For each of these three areas, the paper reviews ACA provisions that are particularly relevant to CSHCN – first those related to the private insurance market and Exchanges, and then those related to the major public coverage programs for children: Medicaid and CHIP.

MAXIMUS: State Health Literacy: The Pathway to Patient Engagement and Cost-Effective Care
This white paper relates the complex set of health IT requirements in the Recovery Act of 2009 to the problem of health literacy.  “If health IT is to have a sustained impact on improving quality and reducing the cost of care, patients need accessible, easily understandable information (such as personal health data and educational materials) to assist them in making decisions about access to care, treatment and costs.” This paper provides specific examples that define the problem as well as suggested steps that providers and consumers can take now to improve health literacy.

CDC: Health Disparities and Inequalities Report — United States, 2011
This report is the first in a series of periodic, consolidated assessments that highlight health disparities by sex, race, and ethnicity, income, education, disability status and other social characteristics in the U.S.  The report addresses disparities in health-care access, exposure to environmental hazards, mortality, morbidity, behavioral risk factors, disability status, and social determinants of selected health problems.

News, Resources & More from Family Leaders 

News You Can Use

Guide to Success
Parents, Let’s Unite for Kids (PLUK), Montana’s F2F HIC, collaborated with the state Developmental Disabilities Program to create this handbook describing the Program’s services, eligibility process, and answers to common questions parents ask about the program.

PEAL's CHIP, Medical Assistance and Waivers for CYSHCN On-line WorkshopCHIP, Medical Assistance and Waivers for CYSHCN On-line Workshop
This nine-part video workshop, developed by the  Parent Education & Advocacy Leadership (PEAL) Center, Pennsylvania’s F2F HIC in collaboration with David Gates from the PA Health Law Project, provides information for families, including legal advice, on health care financing programs.  Parents can choose to watch the whole workshop or to view specific chapters.  An accompanying PowerPoint handout can be downloaded from the PEAL website and parents can find out more from David Gates in follow-up Q & A webinars.


Family Manual for Transition
Family Voices of Illinois, partnering with Title V CSHCN agency parents, the Illinois Chapter of the American Academy of Pediatrics, and other state agency and advocacy agencies, created this comprehensive manual for youth transition with sections on Special Education and Transition Planning; The World of Adult Services/Supports; Health Insurance and Employment; and Services and Supports, Options and Trends. The manual is available on CD, in hard copy and online. http://www.thearcofil.org/secure/reveal/admin/uploads/documents/FamilyManualTransitionNov302010FINAL.pdf


Staying on Track with your Child who has Hearing LossStaying on Track with your Child who has Hearing Loss
A care notebook for families whose child has been diagnosed with hearing loss, has been developed by Family Voices of Tennessee’s Newborn Parent Consultants and state Early Hearing Detection and Intervention (EHDI) representatives, with the Tennessee Disability Coalition staff. This notebook provides a single place to keep information about emergency contacts, health care providers, audiological information, including amplification notes, and much more.  Download the Newborn Hearing Notebook or request a copy from familyvoices@tndisability.org.


Health Care Disparities Focus Groups: The Experiences of Latino and African American Parents of Children with Disabilities and Special Health Care Needs
This report, developed by the Partnership for People with Disabilities at Virginia Commonwealth University (F2F HIC) for Virginia Department of Health,  summarizes the findings of focus groups  (African American and Latino parents) conducted to address the extent to which families report receiving coordinated health care and family-centered care and how race/ethnic factors affect coordination of health care and family-centered care.  Results from the 54 parents “illustrate that care coordination from health providers is largely absent, but is not perceived to be a result of racial discrimination or bias . . . parents recognized that elements of family-centered care, particularly the level in which they feel heard by health care providers, may be affected by their race or ethnicity. Most of the parents reported that health care providers spend insufficient time with them and that health care providers often disregard their concerns. Feeling heard by health care providers does not translate into preferring a doctor of the same race/ethnicity or establishing trust in relationship to health care providers.


Family/Professional Partnership Uses Peer Support Model to Bridge Gaps in Medicaid
Rhode Island Parent Information Network (RIPIN), home to Rhode Island’s Family Voices/Family to Family Health Information Center, has partnered with the RI Department of Human Services, Neighborhood Health Plan of RI and United HealthCare in a new program, “Communities of Care.”  As part of this program, RIPIN’s Communities of Care Peer Navigator team reaches out to individuals identified by their health plans through utilization records, helping them to better access community resources, appropriate, timely and proactive medical care, and consistent primary care. The primary goal of this program is to connect individuals with what they need before they become ill or need emergent care, thereby reducing unnecessary emergency room visits. Care Managers from the health plans work with Peer Navigators to better educate families about services and care coordination through a family-friendly medical home model, where the entire situation and family is cared for rather than only addressing individual issues. RIPIN’s 15 Peer Navigators are all individuals, family members or other caregivers of individuals with special health care needs, experienced in navigating community systems.



 February is National Children's Dental Health Month


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