Catalyst Center Week in Review.

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By Sara R. Collins
The Commonwealth Fund
Stateline: State Policy & Politics
December 20, 2011
The U.S. Department of Health and Human Services (HHS) had been working toward developing an Essential Health Benefits package that individual and small group health insurers, as well as all health plans in the state exchanges will have to provide as mandated by the Affordable Care Act (ACA). In a change of policy, on December 16, 2011, HHS issued an Essential Health Benefits Bulletin that says, rather than creating a one-size-fits-all essential health benefits package, states will have some flexibility to create a state-specific benefit plan, as long as each state covers services in the following ten categories:   
  1. Ambulatory patient services
  2. Emergency services
  3. Hospitalization
  4. Maternity and newborn care
  5. Mental health and substance use disorder services, including behavioral health treatment
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices
  8. Laboratory services
  9. Preventive and wellness services and chronic disease management, and
  10. Pediatric services, including oral and vision care
States must select one of the following as a benchmark plan, to "fill in" the health services provided in each category:
  • one of the three largest small group plans in the state by enrollment, or
  • one of the three largest state employee health plans by enrollment, or
  • one of the three largest federal employee health plan options by enrollment, or
  • the largest HMO plan offered in the state's commercial market by enrollment
If a state's benchmark plan does not provide services in one or more of the 10 categories, states can pick a second plan to complete its health benefits package.

This will allow insurers to continue covering a state's mandated benefits without the state incurring the cost of those services which fall outside of the HHS Essential Health Benefits package. See the 2010 list of each state's health insurance mandates. Public input to HHS is welcome about this process. The deadline for comments is January 31, 2012. Send comments to:

By Jennifer Haberkorn
January 6, 2012
On March 26, 2012, the U.S. Supreme Court will begin hearing oral arguments in the 26 lawsuits filed by opponents of the Affordable Care Act (ACA). The suits challenge the validity of the Medicaid expansion and state that the individual mandate that requires everyone to have health insurance is unconstitutional because Congress cannot regulate what people purchase. Furthermore, if the court rules the individual mandate as unconstitutional, opponents want the entire ACA repealed. On January 6, 2012, the Justice Department filed a brief on behalf of President Obama's administration. Using a prior opinion by Justice Scalia as the crux of its argument, the Justice Department states Congress can regulate interstate commerce and require individuals to have health insurance.     

By Joan Biskupic
USA Today
December 31, 2011
Liberals and conservatives think that when the U.S. Supreme Court hears oral arguments about the constitutionality of the Affordable Care Act (ACA) in March 2012, only seven of the nine judges should participate. In March 2010, when President Obama signed the ACA, Justice Kagan was the U.S. Solicitor General. Justice Thomas' wife has publicly stated her opposition to the health reform law. In his year-end report, Chief Justice Roberts addressed the court's recusal policy and iterated his confidence in all the justices' abilities to know when to excuse themselves from a case.   

Centers for Medicare and Medicaid Services
December 28, 2011
The Children's Health Insurance Program Reauthorization Act (CHIPRA) of 2009 includes "Performance Bonuses" for states that work to ensure all eligible children are enrolled in Medicaid and the Children's Health Insurance Program (CHIP) and that adopt at least five of eight program features to streamline the application and retention process. These features include continuous eligibility, presumptive eligibility, and elimination of in-person interviews. The Centers for Medicare and Medicaid Services (CMS) has awarded performance bonuses, totaling almost $300 million, to 23 states, 7 of which are first-time awardees. As a result of these efforts, 1.2 million previously uninsured children now have health coverage through Medicaid and CHIP. See the list of states, the CHIPRA program features each adopted, and their bonus amounts.

By Michael Tomsic
National Public Radio
January 3, 2012
As the result of budget cuts, public school nurses are succumbing to the same fate as art, music, and physical education programs. At a time when more and more children and youth with special health care needs (CYSHCN) are going to school, there are fewer school nurses in attendance to help ensure that the health needs not only of CYSHCN, but also of all students are met during the school day.

All Things Considered, the National Public Radio program that developed this story, shares information from the National Association of School Nurses that states 25% of schools do not have school nurses, and 33% of districts have reduced nursing staff in the last year. The problem is not limited to a particular region; school districts in the Northeast, mid-Atlantic, Southwest and Western states report they have reduced nursing staff due to budget issues. To bridge the "care" divide, teachers and other school personnel are learning the signs of seizures, when to call 911, and administering oral medications and injections.

Letting Ruth Go: My Daughter's Wheelchair Was Her Legs, Her Computer Was Her Voice. What Would I do With the Things She Left Behind?link2  
By Meadow Rue Merrill
The Boston Globe Magazine
December 9, 2011
Seven-year-old Ruth Merrill died in February 2011. In this emotional and life-affirming story, her mother, Meadow Rue Merrill, relates her first meeting with Ruth, a tiny baby from Uganda who was in the U.S. to receive physical therapy to help treat her diagnosis of cerebral palsy. Merrill tells about the difficulties of foreign adoption, their joy at finally being able to welcome Ruth home as a family member, and some of the frustration and delays they encountered while trying to get a wheelchair so Ruth could sit up and be mobile. After Ruth died, Merrill wanted to donate Ruth's specialized car seat, wheelchair, cochlear implant, computer, and other items that helped her daughter participate in life as much like other children as possible. Through the family's determination and resourcefulness, they eventually found new homes for this specialized and expensive equipment.

In response to this article, in particular the delay the Merrill family encountered in obtaining a new wheelchair for their daughter, Deborah Allen, Director of the Bureau of Child, Adolescent, and Family Health at the Boston Public Health Commission and founding member of the Catalyst Center team, wrote Regarding Ruth, a letter to the Boston Globe Magazine, which was published on January 1, 2012. Allen cites a 2007 study by the Massachusetts Consortium for Children with Special Health Care Needs at New England SERVE that documented the difficulties Massachusetts families encounter while trying to obtain durable medical equipment (DME) for their children with complex medical needs, discusses the impact on the children and families, and identifies the barriers. These include lack of a standardized definition for "medical necessity," problems coordinating benefits between private and public health insurers, and little or no oversight of DME vendors. Allen suggests that improvements to the DME procurement process, such as state mandates and changes to Medicaid policy, could help alleviate these delays.

By Gardiner Harris
The New York Times
December 31, 2011
The Drug Enforcement Administration (DEA) has the authority to set manufacturing limits for medications that have high rates of misuse and abuse, such as medications to treat Attention Deficit Hyperactivity Disorder (ADHD). The DEA sets annual quotas for the amount each pharmaceutical company can manufacture, although each company can decide how much of the brand name and generic they make. The Food and Drug Administration (FDA) works to ensure the safety and supply of medications. Despite widespread reports of shortages of ADHD medications by the FDA, the American Society of Health-System Pharmacists, the American Academy of Child and Adolescent Psychiatry, and consumers, the DEA insists there is no shortage and will not increase the manufacturing quota. While the FDA and DEA argue, individuals in need of these prescription medications are "paying the price," literally and figuratively. Families report they cannot find the generic form of the medications and in desperation are paying co-pays that are 20 times higher for the brand name drug. Others, going without their medications, are reported to be at risk for poor job performance and accidents due to untreated attention deficits. 


Authors: Webb E. Long, Howard Bauchner, Robert D. Sege, Howard J. Cabral, and Arvin Garg
December 19, 2011
The American Academy of Pediatrics (AAP) first conceived the Medical Home concept as a way to ensure children with special health care needs received "accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally effective" health care services. Using data from the 2003 National Survey of Children's Health, researchers at the Boston University School of Medicine conducted a secondary analysis of 70,007 families whose children did not have special health needs to see if care provided through a medical home resulted in improved health care outcomes. About 58% of the children included in the analysis had a medical home. Certain socioeconomic and demographic factors were associated with the likelihood of a child having a medical home. White, non-Hispanic children from two-parent families with income greater than 400% of the federal poverty level were more likely to have a medical home. Children whose parents did not graduate from high school were less likely to receive care in a medical home. After correcting for racial and socioeconomic disparities, the researchers found that children who received care in a medical home had higher rates of preventive health visits, fewer sick visits, lower emergency department usage, and missed less school. In addition, families whose children received care in a medical home were more likely to promote healthy behaviors, such as reading and wearing bike helmets. This study provides evidence that the Affordable Care Act's (ACA) promotion of patient-centered medical homes may lead to better health outcomes for all children.

HHS 2011 Year in Reviewlink2  
Watch this 6 minute video or read the transcript that provides an overview of the U.S. Department of Health and Human Services' (HHS) 2011 initiatives, including the Affordable Care Act (ACA), to improve American's health.

Top Ten Catalyst Center Resources for 2011link2  
As in previous years, Catalyst Center staff researched issues and provided information about improving financing of care for children and youth with special health care needs (CYSHCN). Read about the Catalyst Center's top ten resources for 2011.

EventsEvents and Announcements

Date: January 19, 2012, 2:30 - 3:30 PM EST
U.S. Department of Health and Human Services
Health Resources and Services Administration
Maternal and Child Health Bureau
Learn about the purpose and uses of the National Survey for Children with Special Health Care Needs, the data collection methods used for the 2009-2010 survey, the new survey questions, and take a "guided tour" of the online tool for using the data for your own analyses. Learn more and register for this event.

Date: Thursday, February 2, 2012, 1:00 PM EST
National Institute for Health Care Management (NIHCM)
There are many unknowns about the Affordable Care Act (ACA), including whether or not it will ultimately slow and reduce health care spending. This webinar, hosted by the National institute for Health Care Management (NICHM), is an opportunity to hear an expert panel discuss the budget implications of the costs of health care, ways to control costs, and opinions about the mechanisms currently in place for reducing health spending. See the agenda, speaker biographies, and resources, and register for this event.

Washington, D. C.
Join state and national public health and Maternal and Child Health (MCH) leaders to learn about state initiatives to promote MCH, chronic disease prevention, initiatives to promote MCH, and more. The early bird discount on registration ends January 13th!

QuickTipsNews You Can Use from Our Partners  

Data Resource Center Survey

The Data Resource Center for Child and Adolescent Health (DRC) wants to hear from you. They are asking their partners to answer a short survey that will help them plan their work for 2012. Participate in the survey.

You don't have to be a member of the DRC community to access the website and use the data, but if you'd like to receive news and updates from them about new features and initiatives, you can set up an account and register.

Tip2National Academy for State Health Policy Request for Applications

The National Academy for State Health Policy (NASHP) has released a Request for Applications (RFA) for Technical Assistance. Three successful state coalitions will receive technical support from the Agency for Healthcare Research and Quality (AHRQ) to adapt North Carolina's model of primary care transformation. Listen to a webinar and download the application. The application deadline is January 27, 2012. E-mail Larry Hinkle for more information.

PastIssuesIn case you missed is the most popular news item from our last issue of the Week In Review

By Michelle Diament
Disability Scoop
December 7, 2011
Using data from the 2007 National Survey of Children's Health, researchers at the Oregon Health & Science University School of Medicine prepared a report for the Health Resources and Services Administration (HRSA) analyzing overweight and obesity among children with special health care needs. They found that children 10 - 17 years old with special health care needs have a higher incidence of overweight and obesity than children without special health needs, and the more complex the health needs, the higher the likelihood a child will be an unhealthy weight. Christina Bethell, a professor of pediatrics at the university, noted the importance of the report. Disability Scoop quotes Professor Bethell as saying, "It allows us to measure children's health, well-being and health care system performance in the context of their family, home, community and school environments - and to compare across many subgroups of children within and across states. This information is important to identify priorities and opportunities for improving children's health and health care in the United States."

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To view more articles from past issues of the Week In Review, visit the Catalyst Center website. If you have suggestions for news items related to coverage and financing of care for CYSHCN please email Week In Review editor and Catalyst Center Assistant Director Beth Dworetzky by 12 pm EST on Friday at



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The Catalyst Center is a national center dedicated to improving health care insurance and financing for Children and Youth with Special Health Care Needs (CYSHCN). For more information please visit us at or contact Meg Comeau, Program Director at


The Catalyst Center

Health & Disability Working Group

Boston University School of Public Health

715 Albany Street

Boston, MA  02118-2526

The Catalyst Center is funded under grant #U41MC13618 from the
Maternal and Child Health Bureau, Health Resources and Services Administration
U.S. Department of Health and Human Services.