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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. 
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Quote of the Week
Individuals with Autism "are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg." - Paul Collins, author and parent of a person with autism  

E1Join Us for a Catalyst Center Webinar
What is the Medicaid/CHIP 101 Tutorial and What's in it for Me? - A Webinar about the Catalyst Center's Tutorial on the Basics of Medicaid and The Children's Health Insurance Program (CHIP)
Date: April 18, 2012
Time: 12 noon - 1 pm EDT
The Catalyst Center is hosting a five-part webinar series about its recently released 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). You are invited to join the Catalyst Center team and the National Academy for State Health Policy (NASHP) for the first webinar on April 18. This is an opportunity to learn how the tutorial was developed; its learning objectives; and about the technical assistance the Catalyst Center can provide on using the tutorial to educate families, family leaders, Title V staff, and others about Medicaid and CHIP. This is also an opportunity to share partnership activities that are happening in your state and hear about others.   

Register now.

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After registering you will receive a confirmation e-mail containing information about joining the Webinar.
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PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server
Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer




In Case You Missed It...

So, what do you think? 
News Items

In recognition of World Autism Awareness Day on April 2, 2012, the Catalyst Center is highlighting the following news items about issues faced by families raising children and youth with autism spectrum disorders.

Press Release - CDC Division of News and Electronic Media
March 29, 2012

Using data from 14 Autism and Developmental Disabilities Monitoring (ADDM) sites, the Centers for Disease Control and Prevention (CDC) examined evaluation records for children, 0 - 8 years old, to monitor changes in the prevalence of autism spectrum disorders (ASDs) since the last surveillance in 2006 when CDC estimated 1 in 110 children, aged 8, had ASDs. The results, published in Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008, show a 23% increase in the number of children with ASDs, now estimated at 1 in 88 8-year olds. Boys are five times more likely to have a diagnosis of ASDs than girls. In response to this report, Kathleen Sebelius, Secretary of the U.S. Department of Health and Human Services, and CDC Director Thomas Friedan issued statements about the importance of this information, stating it will help drive research and improve services and supports. The CDC advises parents to learn more about child development at Learn the Signs. Act Early. Parents who have concerns about their child's development are encouraged by CDC to "act early" and talk with their child's doctor, an early intervention program, or school.

On Point with Tom Ashbrook
National Public Radio
April 2, 2012

To further explore the new Centers for Disease Control and Prevention (CDC) report about the increase in the number of children with autism spectrum disorders, Tom Ashbrook, host of National Public Radio's On Point program, asked, "How can so many American children have autism?" On World Autism Day, his three guests helped answer the question. Geraldine Dawson, chief science officer for Autism Speaks, shared that preliminary research about exposure to pesticides, air pollution, and other environmental factors may affect a child's brain development and cause autism. Max Wiznitzler, a pediatric neurologist at Rainbow Babies and Children's Hospital in Cleveland, suggested increased awareness and improved screening could help explain why more children are being diagnosed with autism. Glen Finland is the mother of a child with autism and an author. She emphasized the broad spectrum of children with developmental issues, stating, "...once you've met one person with autism, you've met one person with autism." Listen to the podcast of this show.

By Carol Gentry
Health News Florida
March 28, 2012

A recent decision in a Florida courtroom has many autism advocates hoping that as Florida goes, so goes the nation. After four days of testimony, U.S. District Judge Joan Lenard ordered the Agency for Health Care Administration, Florida's Medicaid agency, to provide applied behavioral analysis (ABA) as a covered service for Medicaid-enrolled children with autism spectrum disorders (ASDs). A National Review of Home and Community Based Services (HCBS) for Individuals with Autism Spectrum Disorders, a December 2011 Policy Research Brief by the Research and Training Center on Community Living at the University of Minnesota cites 11 states that cover ABA through Home and Community Based Services (HCBS) waivers. However, until this March 26, 2012 ruling, many state Medicaid programs did not include ABA as part of the federally mandated Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit. Contrary to the Agency for Health Care Administration's testimony that ABA was experimental and therefore not medically necessary, Judge Lenard found there was sufficient evidence to demonstrate that ABA improved the functional status of children with ASDs. Read Judge Lenard's injunction.

By Rachael Rettner
March 19, 2012

Payer of Last Resort: Medical Debt and Financial Hardship among Families Raising Children and Youth with Special Health Care Needs (CYSHCN), a March 2007 Catalyst Center publication documents the financial hardship faced by families raising CYSHCN. A new study published online in Pediatrics, Implications of Childhood Autism for Parental Employment and Earnings, examined family income for families raising children with autism spectrum disorders (ASDs), families raising children with other special health needs, and families raising children without health limitations. The authors found that raising children with ASDs has the greatest impact on household earnings. In particular, mothers of children with ASDs, despite having more years of education than mothers in the two other groups, were 6% less likely to work outside the home. Those that were employed worked an average of 7 hours less per week, their earnings were almost $7,200 less than mothers of children with other special health needs, and $14,755 less than mothers whose children did not have health limitations. Fathers' incomes were not affected. The authors of the study suggest these income disparities are the result of a fragmented service system for children with autism. To illustrate the system of care issues that families raising children with autism face, Rettner's article highlights two families, both raising sons with diagnoses of autism. One mother stays at home to take care of her son and drive him to multiple therapies, which are not provided at school or at another centralized location. The other family, unable to find an appropriate child care setting for their son, reduced work hours to care for him themselves, and to drive him to therapies.

N5Ryan Budget - Same Old Tunelink2
By Joan Alker and Martha Heberlein
Say Ahhh! A Children's Policy Health Blog
Georgetown University Center for Children and Families
March 20, 2012
On March 20, 2012, Representative Paul Ryan of Wisconsin, Chair of the House Budget Committee, introduced The Path to Prosperity: A Blueprint for American Renewal, a federal budget proposal for fiscal year 2013. Nine days later, all but 10 Republican representatives voted in favor of this budget, passing it with 228 votes for and 191 against it. Prior to release of the budget, Karina Wagnerman, Executive Policy and Communications Assistant, at the Georgetown Center for Children and Families  anticipated that Representative Ryan's budget would include a proposal to make Medicaid a block grant program. Her March 19 blog Medicaid Block Grants Reduce Flexibility Less Responsive to Changing Need explains why Medicaid block grants can be harmful to the people who rely on Medicaid for health coverage.

According to Wagnerman, turning Medicaid into a block grant would mean that each state would receive a fixed amount of federal funding, rather than the federal match each state currently receives for each state dollar spent on Medicaid services and administrative costs. To illustrate this point, she describes how the Assistance to Families with Dependent Children (AFDC) program used to serve 75% of families with children living in poverty. In 1996, AFDC was converted to a block grant and renamed the Temporary Assistance to Needy Families (TANF). By 2009, only 28% of families with children living in poverty received assistance from TANF.

In their blog post on March 20, Joan Alker and Martha Heberlein explain further how turning Medicaid into a block grant will affect Medicaid-enrolled children in particular. With a fixed amount of federal funding, a state will have to dedicate a larger portion of its budget to cover new enrollees or cap enrollment and reduce benefits. This version of the House budget also proposes to annul the Affordable Care Act (ACA). If the ACA is repealed, the Maintenance of Effort protections are moot, and the Medicaid expansion, scheduled for 2014 and estimated to provide coverage for an additional 16 million people, will not occur.

N6Don't Forget What the Affordable Care Act is Doing for Former Foster Youthlink2
Aisha Amanda Marie Hunter, Program Assistant, Policy Reform Advocacy, The Annie E. Casey Foundation and Nicole Tambouret, Project Director, New England Alliance for Children's Health
Health Policy Hub: The Community Catalyst Blog
March 21, 2012
There has been a lot of news coverage about the 2.5 million 19 - 26 year olds who now have health insurance due to a provision of the Affordable Care Act (ACA) that allows their parents to keep them on their health plans. But what about the young adults who are not in their parents' care? In this blog, Aisha Hunter and Nicole Tambouret discuss a provision of the ACA that will go into effect in 2014, which will provide the extended coverage benefit to youth aging out of foster care by allowing them to remain eligible for Medicaid up to age 26. Unfortunately, youth aging out of foster care prior to 2014 may continue to experience gaps in coverage, even though foster youth with complex health needs may still qualify for Medicaid as disabled adults; however, because they are unfamiliar with the healthcare system, many do not re-enroll. Hunter's paper, Toward Providing Equal Access to Health Care for Foster Youth, explores system design, policy, and legislative efforts that will work towards identifying and re-enrolling youth in Medicaid.

Note: Many children and youth in foster care are also children and youth with special health care needs. Learn more about the special health needs of children in foster care, and learn how the Key Clinic, a primary care setting in Maine, strives to meet the health care needs of children in foster care.

N7Health Tracking Poll: Exploring the Public's Views on the Affordable Care Act (ACA)link2
Kaiser Family Foundation
March 2012
Since April 2010, the Kaiser Family Foundation has been tracking public opinion about the Affordable Care Act (ACA). They asked, "As you may know, a health reform bill was signed into law in 2010. Given what you know about the health reform law, do you have a generally favorable or generally unfavorable opinion of it?" See the monthly responses, broken down by political affiliation, income, age, gender, and race/ethnicity in an interactive infographic.

N8116 Billion Reasons to be for the Individual Mandate
By Ruth Marcus
The Washington Post
March 20, 2012
In this opinion column, Ruth Marcus explains why she thinks the individual mandate, the provision of the Affordable Care Act (ACA) that requires everyone to have health insurance, should  be one of the more popular elements of the ACA, rather than sitting at the bottom of the Kaiser Health Tracking Poll charts. She attributes the lack of popularity to a lack of understanding, as once the provision is explained, opinions improve. Citing text from the Obama administration's brief to the U.S. Supreme Court in favor of the mandate, Marcus notes that in 2008, people without health insurance paid only 37% of their combined $116 billion heath care costs. She encourages people to examine this issue with their wallets, rather than their politics, as the unpaid portion of the health care tab for the uninsured is picked up, in part, by those with health insurance - in the form of higher premiums.

N9Off-Label Use Of Risky Antipsychotic Drugs Raises Concernslink2
By Sandra G. Boodman
Kaiser Health News in Collaboration with the Washington Post
March 12, 2012
The use of "atypical antipsychotics," an expensive class of drugs generally reserved for the treatment of individuals with severe mental health needs, are being used to treat less severe conditions such as sleep disorders, behavior problems, anxiety, and attention deficit disorder. Pharmaceutical companies cannot market these drugs for off-label use, but primary care physicians and other doctors can and are prescribing them for nontraditional use rather than providing counseling, behavior therapy or other treatments first, despite the known side effects, which include rapid weight gain and facial tics. Medical experts, policymakers, and consumer advocates are concerned that patients, including young children and children and youth in foster care, are being given these medications as a convenience to control undesirable behaviors, without first examining the root cause of their problems, which can include poverty and dysfunctional family life. A physician suggested that other medical professionals might be prescribing these drugs for children to make them eligible for Supplemental Security Income (SSI). In 2010, these medications cost more than $16 billion; Medicaid covers the cost of these drugs for their beneficiaries. States are making an effort to stop misuse and cut costs. For example, Texas requires state authorization to prescribe antipsychotics for a child younger than three years old and in Arkansas, parents must provide informed consent before a physician can prescribe an antipsychotic for their child.
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Kaiser Health News
March 29, 2012

Mary Agnes Carey, Kaiser Health News senior correspondent, Attorneys Stuart Taylor and Tom Goldstein, and National Public Radio health policy correspondent Julie Rovner discussed the oral arguments about the Affordable Care Act (ACA) presented to the U.S. Supreme Court on March 26, 27, and 28, 2012. They reviewed elements of the hearings, including some judges' concerns that the individual mandate that everyone have health insurance will give the government unlimited power to regulate all commerce. Several panelists shared their surprise that the Court decided to hear arguments about the Medicaid expansion. No lower court judge ruled against this provision, even though some states contend it's "coercive" because they will lose all federal Medicaid funding if they don't comply. The group addressed questions from viewers, which included whether or not the judges' political ideologies would influence their ruling. Panelists, noting that the Constitution was written more than 200 years ago, agreed it might be difficult for a judge to make a decision about whether or not the law is in the best interest of the country without considering their political instincts. In answer to a question about the likelihood that the Supreme Court would find the entire ACA unconstitutional, the group referenced prior Supreme Court decisions, noting that the Court has not struck down a major regulatory law because it found it to be an overreach of government power since it struck some statutes of the New Deal. There were no clear answers to a question about what will happen to the provisions of the ACA that are already in place if the law is struck. Watch the video or read the transcript.

Prepared by MaryBeth Musumeci
Kaiser Commission on Medicaid and the Uninsured
The Henry J. Kaiser Family Foundation
March 2012

The two main reasons people appeal insurance decisions are 1) they were found ineligible for coverage, or 2) they were denied coverage for a specific service, or a service they were receiving was reduced, suspended, or terminated. While there is an appeals process for all types of health insurance--private, public, federal, military--the Medicaid appeals process has unique differences. The Due Process Clause of the U.S. Constitution guarantees that people denied Medicaid eligibility and current enrollees whose requests for covered services are denied must receive notice of the Medicaid agency's decision and must have an opportunity, through a fair hearing, to have the decisions reviewed by an outside party. Medicaid beneficiaries enrolled in managed care organizations must first use an internal appeals process. If they exhaust the internal appeals process and are not satisfied with the decision, they can then have a fair hearing. This ensures eligibility and/or services cannot be denied without the applicant or beneficiary knowing why, and if they appeal the decision within the timeline, services will continue during the appeals process. This Guide to the Medicaid Appeals Process explains the process, provides case studies, flow charts, timelines, and more.
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E2Tell Us about TEFRA! 
The March 26, 2012 issue of Catalyst Center Quarterly included an article about the TEFRA Medicaid State Plan Option and Katie Beckett Waivers for Children indicator on our State-at-a-glance Chartbook pages. There was a tremendous response to this article and we would like to know more about your interest in this topic.

We invite you to share your thoughts and questions about TEFRA so we can support your efforts around coverage and financing of care for children and youth with special healthcare needs. E-mail your questions and comments to our assistant director Beth Dworetzky.
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PastIssuesIn case you missed it...the most popular news item from our last issue 
Want more news?
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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News to share?
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