Catalyst Center Coverage
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April 30, 2012
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"Nobody cares how much you know, until they know how much you care."

-Theodore Roosevelt
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By Michelle Diament
Disability Scoop
April 17, 2012

President Obama created the "Year of Community Living" initiative in June 2009 to celebrate the 10th anniversary of the U.S. Supreme Court's Olmstead decision that upheld the rights of individuals with disabilities to live in their communities rather than be confined to institutions. Building on this initiative, the U.S. Department of Health and Human Services (HHS) has reorganized the Administration on Intellectual and Developmental Disabilities (formerly the Administration on Developmental Disabilities), the Office on Disability, and the Administration on Aging into the Administration for Community Living within HHS. This new agency will provide "enhanced policy and program support for both cross-cutting initiatives and efforts focused on the unique needs of individual groups such as children with developmental disabilities, adults with physical disabilities, or seniors, including seniors with Alzheimer's." This change also gives disability issues a higher profile, as HHS has a seat at the President's Cabinet table.

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News Items

By Mark Miller
April 16, 2012

While the country awaits the U.S. Supreme Court's decision about two key provisions of the Affordable Care Act (ACA) -- the individual mandate and the Medicaid expansion -- Rhode Island, Maryland, and Oregon are not taking a wait-and-see attitude. Columnist Mark Miller reports that prior to the passage of the ACA these three states were working to reform health care and they are committed to moving forward with these efforts, regardless of the Court's decision expected in June. They are joined by 16 other states and the District of Columbia that have enacted legislation, or their governors have issued an executive order, to create a state health insurance Exchange. Of the remaining states, only 15 have taken few or no steps towards creating an Exchange, a marketplace where residents with incomes less than 400% of the federal poverty level (less than $92,200 a year for a family of four) and no access to an affordable employer-sponsored health plan, will be able to compare and shop for health insurance. If the Court upholds the ACA, these states will have to play catch up and work quickly to establish their Exchanges so they can be operational by January 2014. See a map of each state's progress towards developing an Exchange. If the Court decides the individual mandate is unconstitutional, but does not strike down the entire ACA, Congress may have to enact additional legislation to ensure enough healthy, uninsured individuals purchase health insurance. Without robust participation in the Exchanges, insurance companies will not be able to control premium costs or provide coverage to individuals with pre-existing conditions. In February 2011, the U.S. Government Accountability Office (GAO) interviewed experts about ways to encourage voluntary enrollment in private health plans. Recommendations include limiting open enrollment periods, creating public outreach and education campaigns, providing personalized assistance with enrollment, and including insurance status as part of personal credit ratings.

By Sam Baker
Healthwatch: THE HILL'S Healthcare Blog
April 9, 2012

If there were an ICD-9 code for "needs more time," a majority of physicians would be self-diagnosing and using the code to explain why they can't begin using the new ICD-10 system as scheduled in October 2013. ICDs, which stand for "International Classification of Diseases," are the universal codes used to describe symptoms, diagnoses, and causes of death. Doctors, hospitals, and other providers use ICD codes to bill health insurers for services. The U.S. Department of Health and Human Services (HHS) proposed the new ICD-10 coding system, which has five times as many codes as ICD-9 because it includes new procedures, diagnoses, preventive services, and codes to describe the degree of difficulty for a specific procedure. HHS is now granting a one-year delay in implementation, because, as reported in this article, doctors state the new rules are "overly complicated." However, once the new coding system is put into practice, it will save an estimated $4.6 billion, as it will streamline reimbursement and decrease fraud.

N3Respite Programs for Family Caregivers Face Cuts Despite Growing Needlink2
By Jessica Marcy
Capsules: THE KHN BLOG
April 26, 2012

In 2009, the National Alliance for Caregiving included, for the first time, caregivers of children younger than 18 with special needs in their annual study of family caregivers, Caregiving in the U.S. 2009. These families spend their days monitoring a child's condition, assisting with daily activities that other children the same age do independently, giving medications orally and by injection, preparing special foods, coordinating the financing of care, advocating for additional supports and services, and more. If those estimated 16.8 million family caregivers made a New Year's Resolution to take a break in 2010, many were not able to keep it. Wanted: A National Respite System, a New York Times article published on December 31, 2010, reported that despite federal respite legislation (the Lifespan Respite Care Act of 2006), there was very limited funding. Respite, defined by the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center as, "planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult," remains in short supply. The gains states have made in providing family respite are now losing ground to budget deficits. Illinois, Tennessee, Rhode Island, California, and New Hampshire either have made cuts, proposed cuts, or suspended respite services. As reported in this Kaiser Health News blog, saving money on respite care may lead to increases in costs for other services. The care families provide allows their family members with disabilities to live at home. Without respite, exhausted family caregivers, some aging and struggling with their own health needs, may be unable to continue to provide the care that keeps individuals with special health care needs, and others, out of hospital and institutional care, which is significantly more expensive.

N4The Reasons for Respitelink2
By Kay Marner
ADDitude: Living Well with Attention Deficit
April 2, 2012

In this blog, Kay Marner, the parent of a child with attention deficit hyperactivity disorder (ADHD), responds to "The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders," an article from the January 2012 issue of the Archives of Pediatrics and Adolescent Medicine. The authors explored the effects of outpatient behavioral and socialization therapies provided to Medicaid-enrolled 5 - 21 year old children and youth with autism spectrum disorders. They found that the amount of therapy received did not decrease the rate of hospitalization and concluded that therapy was not effective. They did comment, however, that many practitioners lacked the necessary training to provide effective therapy. The researchers also examined the provision of family respite and found an 8% decrease in the rate of hospitalization for each $1,000 spent on respite services. Marner offers a different opinion about the usefulness of community-based therapies. She observes that therapy, which is an individual support, benefits the child. On the other hand, respite, which provides stressed family caregivers with a much-needed break, benefits the entire family and may account for reduced hospitalization rates. Because respite is a community-based service that helps families keep their child safely at home, rather than in the hospital, Marner's family receives respite through a Medicaid waiver in her state. Marner and the study's authors agree that it would be beneficial for states to expand Medicaid options to include respite services.

N5Americans' Views on the Personal Impact of the ACA and the Supreme Court's Decisionlink2
The Henry J. Kaiser Family Foundation
March 2012

The Henry J. Kaiser Family Foundation has been tracking public opinion about the Affordable Care Act (ACA) since its passage in March 2010. With the recent news coverage of the U.S. Supreme Court hearings about the constitutionality of several provisions of the ACA, Kaiser conducted an additional poll of more than 1,200 adults throughout the country. They asked participants if they thought their families would be better or worse off under national health reform and how much (a lot, some, not much, or no impact) the Court's decisions might affect their families. The results, summarized in this Data Note, are reported by current insurance status, age, household income, the presence of pre-existing conditions, and political affiliation. Only 32% of individuals that are currently uninsured, and therefore most likely to benefit from the Medicaid expansion and insurance subsidies, think they will be better off under the ACA. Only 33% think the Court's decision will affect them a lot. For households with members with a pre-existing condition, only 25% thought they would be better off under the ACA; 34% thought they would be worse off, and 34% thought the ACA would not make a difference. Democrats were twice as likely as Independents and almost eight times as likely as Republicans to think they would be better off under the ACA. Thirty-three percent of Republicans, twenty-six percent of Independents, and twenty-three percent of Democrats thought the Court's decisions would affect them a lot.
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By Karen VanLandeghem and Edward L. Schor
The Commonwealth Fund
February 8, 2012

State Medicaid and Title V programs are required to coordinate with each other to ensure children with special health care needs (CSHCN) receive a comprehensive array of services. In addition, each state must specify how its Children's Health Insurance Program (CHIP) will coordinate with other public and private health programs, including Title V. (Learn more about Title V, Medicaid, and CHIP partnerships in this section of the Catalyst Center Medicaid/CHIP tutorial.) To foster and expand existing public partnerships to include private health care services, the Affordable Care Act (ACA) offers states various tools and funding opportunities. This issue brief provides an overview of provisions of the ACA that will help states develop public-private partnerships. These include:
The authors highlight how four states have used these tools to create public-private partnerships that increase coverage, improve quality of care, and reduce health care costs for women and children. Colorado is engaging key stakeholders in its Colorado Medical Home Initiative, which is a partnership between the state's Medicaid agency, Family Voices Colorado, the Colorado chapter of the American Academy of Pediatrics, and the Division of Family Health Services in the Department of Public Health. Its purpose is to establish medical homes in order to promote high-quality health care for children that qualify for Medicaid and CHIP, including children with special health care needs (CSHCN). The Florida Children's Medical Services (CMS) Network is building systems to serve children with special needs and provide care coordination. CMS is a managed care plan option for CSHCN enrolled in Medicaid or CHIP. With the help of a CHIPRA (Children's Health Insurance Program Reauthorization Act) demonstration grant, it also pays for pediatric primary care in certain areas of Florida. Ohio and Vermont are both developing standards and promoting quality with Best Evidence for Advancing Child Health in Ohio Now (BEACON) and the Vermont Blueprint for Health. BEACON is a collaborative that promotes cost-effectiveness in care and expands developmental screening for Medicaid-enrolled children. The Vermont Blueprint for Health is a health care reform initiative that requires major insurers to support Community Health Teams and recognize Advanced Primary Care Practices as patient-centered medical homes.

Kaiser Commission on Medicaid and the Uninsured
The Henry J. Kaiser Foundation
March 2012

This issue paper from the Kaiser Commission on Medicaid and the Uninsured, provides an overview of the governors' budget proposals for Medicaid for fiscal year 2013. In general, Medicaid enrollment and spending has slowed as the economy has improved. The majority of states are proposing Medicaid expansions or enhancements for eligibility and enrollment, benefits, long-term care, care management, health information technology (HIT), and program integrity. Some states budgeted for an increase in provider rates, as they will receive additional federal funds from the Affordable Care Act (ACA) for primary care physician fees in 2013. Despite the Maintenance of Effort (MOE) requirement of the ACA, six states have proposed cuts for eligibility and enrollment; however, these reductions are subject to approval from the Centers for Medicare and Medicaid (CMS) Services before they can go into effect. States are also implementing provisions of the ACA, such as the health home option and use of HIT; the 90% federal match rate for these improvements is incentive for updating and coordinating systems of care. In addition, many states are working to reduce costs with proposals for Medicaid managed care initiatives.

From the American Academy of Pediatrics Committee on Child Health Financing
By Lead Authors Mark E. Helm and Patience Haydock White
January 1, 2012

In 2008, the American Academy of Pediatrics (AAP) published the third edition of Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, a comprehensive set of recommendations for health supervision, developmental surveillance, and anticipatory guidance for infancy, early and middle childhood, and adolescence through age 21. The Affordable Care Act (ACA) references Bright Futures as the standard of care for children and young adults. This policy statement from the AAP recommends:
  • Comprehensive health services for children and young adults, birth through age 26, that includes children and youth with special health care needs;
  • A scope of services that builds on the broad categories of recommended services, which mirror, in part, the 10 essential health benefits required by the ACA;
  • The provision of these services by Medicaid, the Children's Health Insurance Program (CHIP), and all private health insurance plans (independent, fully insured and self-funded employer-sponsored health plans);
  • Coverage decisions based on "evidence of usefulness and understanding of risks" that consider new and changing treatments and evolving standards of care in the absence of a scientific evidence base for treatment;
  • Adequate compensation of services to incentivize children's access to care
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EventsEvents and Announcements

The Catalyst Center is hosting a series of five webinars about its newly released Medicaid/CHIP Tutorial, Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the Children's Health Insurance Program (CHIP). If you were unable to participate in the first webinar on April 18th entitled "What Is the Medicaid/CHIP Tutorial and What's In It For Me?" you can download the slides and listen to the playback.

Rylin Rodgers, Director, Family Voices of Indiana, participated on the April 18th webinar. She shared, "The Catalyst Center leads the way in creating materials that are useable. And by useable I mean by all audiences, something I am SO grateful for because it allows us to build partnerships by being on the literal 'same page'." If you haven't yet given us your comments on the webinar, please take 3 minutes to answer a short survey. We rely on your feedback to improve future webinars and ensure we address your need for information.

The Catalyst Center invites you to participate in the second webinar, "Understanding the Basics: Medicaid & CHIP and Building Partnerships Among Stakeholders" on May 16, 2012, from 12 noon - 1 pm EDT. Visit the Catalyst Center website for registration information and the schedule for the entire webinar series.
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NewsfromPartnersNews You Can Use from Our Partners

The National Maternal and Child Oral Health Resource Center at Georgetown University has developed new resources for improving the oral health of infants, children, adolescents, and families. Leadership and Legacy: Oral Health Milestones in Maternal and Child Health is a timeline of U.S. events that have helped improve families' overall health. The Oral Health for Infants, Children, Adolescents, and Pregnant Women: Knowledge Path and Focus on K-12 Education includes tools, data, news, and publications of interest, for parents and professionals, about children with special health care needs.
PastIssuesIn case you missed it...the most popular news item from our last issue

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To view more articles from past issues of Catalyst Center Coverage, visit the Catalyst Center website. For state-specific news, visit the Catalyst Center Facebook page.
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If you have suggestions for news items related to coverage and financing of care for CYSHCN please email Beth Dworetzky Catalyst Center Coverage editor and Catalyst Center Assistant Director by 12 noon on Friday.
The Catalyst Center is a national center dedicated to working with states and stakeholder groups on 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 is funded under cooperative agreement #U41MC13618 from the Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. Lynda Honberg, MHSA, MCHB/HRSA Project Officer. The contents of Catalyst Center Coverage are solely the responsibility of the authors and do not necessarily represent the views of the funding agencies or the U.S. government.