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November 6, 2009

H1N1: A National Emergency

Last week President Barack Obama declared H1N1 a “national emergency,” due both to the spread of the disease and the potential for serious illness and death, especially in vulnerable populations. Availability of the vaccine continues to lag behind the need, but the gap is closing. Dr. Thomas Frieden, the Director of the Centers for Disease Control and Prevention, at the October 30, 2009 press conference, gave updates on the spread of the virus, availability of vaccine, and treatment statistics:

The Virus:

• H1N1 is currently widespread in 48 states, with some decreases in the southeast, but it isn’t known if there may be another wave in the months to come.
• Unlike the seasonal flu, the H1N1 flu is a younger people’s disease. Whereas 90% of deaths to seasonal flu are to seniors 65 and older, 90% of H1N1 deaths are younger people.
• As of 10/30/09, there have been 114 deaths in children from laboratory-confirmed H1N1—two-thirds of those were to children with underlying health conditions.
• Prevention and treatment are key, especially in vulnerable populations.

The Vaccine:

• The supply of the H1N1 vaccine is increasing steadily, but there is still not enough for all the people and health care providers who need it.
• More people at high-risk, health care providers, and school children (through school clinics) are getting the vaccinations.
• Demand for seasonal flu vaccine is also on the rise. The H1N1 vaccine is not effective against seasonal flu. While supply is currently limited, it is expected to build in November and December. H1N1 is currently widespread in 48 states, with some decreases in the southeast, but it isn’t known if there may be another wave in the months to come.

The Treatment:

• Some areas are experiencing shortages of the liquid form of Tamiflu most often prescribed for children although compounding pharmacies are making liquid Tamiflu from the adult version.
• Prompt treatment is important—especially for vulnerable patients with underlying health conditions.

Reminder:
You can check the status of the flu vaccine availability in your area by going to www.flu.gov. Additional resources can be found on the Family Voices H1N1 resource page.

Family Leadership in the States

Making Connections - South Carolina Style

Family Connection, South Carolina’s F2F HIC, is expanding its ability to reach out to families of special needs children through both technology and human connection: FCParentsOnline: A web area created by parents for parents, featuring:

• The Story Board: Parents can read and contribute their personal stories about children with special needs.
• Parent Message Boards: Parents can communicate with other parents in similar circumstances. There are disease-specific boards, as well as those designed for fathers, grandparents, siblings, and those who have lost a child.
• InfoAble Portal: Parents can research heath information, check out books/videos or “Ask a Librarian” a research question.

The Fathers Network of South Carolina: Thanks to a $25,000 grant from the National Fatherhood Initiative (NFI), Family Connection is building its capacity to develop fatherhood programming. “Parent to Parent” support is typically “Mom to Mom” and pro-grams and support groups that work well for women don’t necessarily translate well for men, who by their nature, want to “fix things.” Said one father, “We want information. We’re not looking to hold hands and sing Kum-by-yah—we’re seeking things we can do to make our families’ lives better.” The three program components of this program are:

• The Parent-Advisory Council which focuses on a strategic plan for fathers.
• A Fatherhood Survey that asked fathers what services they need, and the best way to deliver them in a father-friendly way.
• Training of the Family Connection Staff of types father-desired provide to “coaches” father train and recruit father-desired types of support.

Family Connections makes a difference. Allyson Velkovich, a Family Connection parent who shared her story on the Story Board, summed it up:

I can't say enough about how FC has impacted our lives. I really don't know how we would have fared without it, as individuals and as a family learning to speak a whole new language with our son, but I know how fortunate we are to have become a part of the FC family. It is our sincere hope to be able to help and support other families as we ourselves have been supported.

Visit Family Connection of South Carolina at: www.familyconnectionsc.org.

Legislative Corner

Health Care Reform—The Outlook for Culturally Diverse Populations

The Congressional debate over health care reform continues to be a complex, multi-faceted attempt to create a system of health care that is both affordable and equitable for all people in the US. A recent webinar sponsored by the National Health Law Program (NHeLP), presented an update on one aspect of reform often overlooked—what health care reform and services might look like for culturally diverse populations. Maya Youdelman and Sarah Lichtman Spector from NHeLP discussed provisions in the various committee versions of health care reform in the House and Senate—what is included, what is omitted, and the implications for culturally diverse groups.

Relevant issues being addressed include such things as nondiscrimination provisions; the creation of a Center for Quality Improvement to disseminate best practices in culturally appropriate formats and languages; and cultural and linguistic training for health care professionals.

The presenters also gave an overview of the “Asks” related to:

• Culturally and Linguistically Appropriate Services (CLAS) standards—to ensure effective communication between patient, family, and all levels of health care professionals, from lab technician to doctor.
• Data Collection—to require all Health and Human Services programs to collect racial, ethnic, and linguistic data in sufficient detail needed to study subpopulations.
• Immigrants—to ensure access to health care and insurance through appropriate eligibility rules for subsidies, a lifting of the 5 year bar for new legal residents, and protection for mixed immigrant families so that eligible children actually receive the health care they are entitled to—regardless of parental status or income.

Progress on these “asks” varies widely from committee to committee. There is a potential for amendments in both House and Senate bills. Legislation must pass both chambers, go through conference, and then be passed again in the chambers before being sent to the President for signing. Clearly there is more work to be done.

Thanks to Jamila Davey, Family Voices Executive Assistant, for providing notes from this webinar.

If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

KASA Chapter Development

Kids As Self Advocates, a project of Family Voices, will soon be actively seeking chapters in each state. KASA youth are currently working on a chapter development manual that is expected to be released in the spring. For ongoing news and updates visit the KASA website

Dr. Merle McPherson Receives Award

Dr. McPherson, MD, MPH, FAAP, a member of the Family Voices Board of Directors, received the Arnold Capute Award at the AAP National Conference held on October 17, 2009 in Washington, D.C. This award is presented to a physician who has made significant contributions in his or her field.

In addition to having a distinguished career serving families across the US as the Director of the Division of Services for Children with Special Health Care Needs (MCHB), Dr. McPherson is recognized as a national and international leader in the development of comprehensive, community-based service systems for children with special health care needs. Congratulations, Dr.McPherson!

News You Can Use:
Resources and More

Handy Forms & Helpful Fact Sheets for Families
Caring for a CYSHCN can stress a parent’s ability to stay organized, while having information readily accessible can help improve communication with care providers. The Center for Children with Special Needs, a program of Seattle Children's Hospital, has developed almost 100 forms and fact sheets on a wide variety of topics such as: care schedule, diet tracking, respite care list, asthma, diabetes, and more.

CHIPRA Grant Opportunity
Centers for Medicare & Medicaid Services (CMS) has announced funding for demonstration grant projects that address at least one of the following areas:

• measures of quality for children covered by Medicaid and CHIP;
• health information technology (HIT);
• provider-based models; and
• model electronic health record (EHR) format.

Twenty million dollars will be awarded each FY over the five-year period of performance (2010 through 2015) to implement the demonstration grants. A total of 10 grants will be awarded. Multi-state projects are strongly encouraged and will be scored higher. Find out if your Medicaid Program is applying and how family groups will be involved. Applications are due January 8, 2010. Download the application here.

Public Comments Sought on Process to Identify Quality Measures
A subcommittee (SNAC), of the National Advisory Council of the Agency for Healthcare Research and Quality (AHRQ), has identified 25 preliminary quality measures for voluntary use by Medicaid and CHIP programs. Quality measures that collect data on both children with and without special needs and that can distinguish discrepancies among children of varying racial and ethnic identities have been included. The SNAC subcommittee is currently seeking comment on the process for identifying identify these quality measures. Offer your comments regarding how families can be involved in developing effective quality measures.

Bright Futures Family Information Sheets—All 10 Now Available for Review!
As reported in September’s Friday’s Child, two-page information sheets that correspond to the 10 themes in the AAP Bright Futures project have been created by Family Voices as a part of the Bright Futures Family Pocket Guide revision. Contact Betsy Anderson to review the sheets noted below:

• Family Support
• Healthy Child Development
• Mental Health
• Healthy Weight
• Healthy Food and Eating
• Physical Activity
• Dental Health
• Healthy Sexual Development and Sexuality
• Safety and Injury Prevention
• Community Relationships and Resources

From Our National Partners

Commonwealth Fund

The Commonwealth Fund has released their second state health care scorecard report, Aiming Higher: Results from the 2009 State Scorecard on Health System Performance. The report ranks states on 38 indicators in the areas of access, prevention/treatment quality, avoidable hospital use and costs, healthy lives, and equity.

AAP

This new issue of the American Academy of Pediatrics’ Bright Futures newsletter highlights new tools for physicians to make the Bright Futures Guidelines easier to use, a Medical Home Toolkit, and the upcoming revision of the Bright Futures for Families Pocket Guide from Family Voices.

CAHMI

The Child and Adolescent Health Measurement Initiative (CAHMI) has announced new data resources for advancing state-level knowledge and action on medical homes for children and youth.

Catalyst Center

The Catalyst Center has a new eNewsletter available. This month’s issues includes an update of their online chartbook state pages, new briefs and other information on health reform. If you have a question about financing care for CSHCN contact kjantz@bu.edu and it will be addressed in the Catalyst eNewsletter.

Patient Centered Primary Care Collaborative

A new consumer publication, A Collaborative Partnership, Resources to Help Consumers Thrive in the Medical Home, a Guide for Engaging Consumers, Patients and Families, includes numerous resources, including some from Family Voices.