In 2009, the Lucille Packard Foundation for Children's Health created a grantmaking and advocacy program with the goal of transforming a fragmented and costly system of care for children and youth with special health care needs (CYSHCN) into one that is family-centered, high quality, and coordinated. Current Foundation activities that help advance this goal include:

• A grant to the Center for Medical Home Improvement to get input from providers, families, and patients on creating a template for hardcopy and electronic care plans for CYSHCN;
• Use of life-course and ethnographic models to improve the experience of care for families raising CYSHCN;
• Projects that both inform families of CYSHCN about how well the current system of care is working and that help them build needed skills to use their experiences to improve care;
• Redesign of successful adult models for self-managing care to support self-management skills for CYSHCN and their families;
• Examination of the opportunities in the Affordable Care Act (ACA) and public policies that will improve the family and patient experience of care and overall health, as well as a focus on strategies that improve financing of care and controls costs.

U.S. Department of Health and Human Services (HHS) Press Office

November 1, 2012

January 1, 2013 will be more than just the first day of a new year. It will also be the start of a two-year rate increase for primary care providers, including pediatricians and related subspecialists who treat Medicaid patients. This requirement of the Affordable Care Act (ACA), coupled with the efforts of the National Health Services Corp, detailed below, will help strengthen the primary care workforce. 

U.S. Department of Health and Human Services (HHS) Press Office

October 11, 2012

By Michelle Diament

Disability Scoop

October 23, 2012

Prepared by Manatt Health Solutions, Center for Health Care Strategies (CHCS), and State Health Access Data Assistance Center (SHADAC)

State Health Reform Assistance Network

September 2012

This issue brief by the State Health Access Data Assistance Center (SHADAC) at the University of Minnesota, the Center for Health Care Strategies (CHCS), and Manatt Health Solutions includes a worksheet for states to use in creating a cost/benefit analysis on implementing the optional Medicaid expansion provision of the Affordable Care Act (ACA). As noted in the blog by Lynn Blewett, each state's financial analysis must include the cost of currently eligible adults and children who are not enrolled, as states will only receive an enhanced match for newly eligible populations in 2014.

By Joan Alker, Tara Mancini, and Martha Heberlein

Georgetown University Health Policy Institute Center for Children and Families

October 2012

These authors, faculty with the Georgetown University Health Policy Institute's Center for Children and Families analyzed data from the American Community Survey for 2009 through 2011 to chart the status of uninsured children throughout the country. They found:  

• Despite an increase in the number of children living in poverty, fewer children are uninsured.
• Texas, California, Florida, Georgia, Arizona, and New York account for half of all uninsured children.
• Massachusetts, with its "culture of coverage" has the lowest number of uninsured children.
• Two-thirds of the 5.5 million children without insurance are eligible for Medicaid or the Children's Health Insurance Program (CHIP), but are not enrolled.

As implementation of the Affordable Care Act (ACA) continues, and states work to streamline eligibility and enrollment and upgrade information technology systems, the number of eligible children who are not enrolled should decrease. The authors expect to see a further decline in uninsured children in states that implement the optional Medicaid expansion provision of the ACA. This is because the ACA prohibits parents from enrolling in Medicaid if their children are not enrolled in other public or private coverage. Other key findings include:

• There are significant disparities among uninsured children by race, age, family income, and geographic location. Hispanic children of any race and American Indian/Alaskan Native children are two and three times more likely to be uninsured than white children, respectively.
• Older children (ages 6 to 18) are more likely to be uninsured than younger children.
• A higher percentage of families living at less than 50% and 100% of the federal poverty level have Medicaid for their children than families with higher income.
• Children living in rural areas are more likely to be uninsured than children living in urban areas.

The Kaiser Family Foundation

November 1, 2012

Medicaid is an important publicly funded program, which provides health care access, financing, and coverage for U.S. citizens with low income including children and youth with special health care needs (CYSHCN). The optional Medicaid expansion provision of the Affordable Care Act (ACA), if adopted by a state, will expand Medicaid eligibility to legally residing childless adults. Take the Kaiser Family Foundation's Medicaid Quiz to see how much you know about the people Medicaid serves, per person spending in Medicaid compared to private health insurance, differences in emergency room usage, eligibility under the ACA, and more.

Learn more about publicly funded health insurance programs and CYSHCN. The Catalyst Center has developed a tutorial on the basics of Medicaid and the Children's Health Insurance Program (CHIP). 

The Association of Maternal and Child Health Programs (AMCHP) is hosting a Social Media Campaign on Systems Building for Children and Youth with Special Health Care Needs (CYSHCN) during the month of November. The Catalyst Center is participating in this campaign; watch for the resources our Center has shared as well as existing and new content and materials from other organizations that have contributed. Follow AMCHP on Facebook and Twitter to learn more.

November is National Family Caregivers Month. Caregiving encompasses more than medical care received from health care professionals. Read the Presidential Proclamation that recognizes the important contributions family caregivers make to ensuring the health, well-being, and safety of their loved ones, including children and youth with special health care needs. 

Patients, family members, caregivers, nurses, care coordinators, and other health providers - the Robert Wood Johnson Foundation (RWJF) wants to be watching you. The Foundation is hosting a Transition to Better Care Video Contest. They are looking for stories about innovative ways providers and patients have worked together to improve transitions from the inpatient setting or other best practices for improving patient care and health outcomes. The deadline for submissions is November 17, 2012. Visit the Care About Your Care website for information about entering a video, consent forms, and judging criteria.