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"An optimist is a person who starts a new diet on Thanksgiving Day."
- Irv Kupcinet
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The Paxton Family: Doing What it Takes to Meet Chance's Hearing Needs
The latest in a series of case studies on challenges families face in getting their children's care paid for.
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Chance's cochlear implants help him to thrive. He is very proud of the "Arrow of Light" award he received this year, the highest Cub Scout award.
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Eleven-year old Chance's cochlear implants don't get in the way of him doing all the things he loves: playing soccer, going camping with his scout troop, and being on the city swim team. Thanks to his family's commitment to ensuring that Chance got the services and supports needed, he is doing well in a regular classroom and playing with friends in the neighborhood. However, the path to this success story was long, costly, and filled with many roadblocks.
The Paxton family's struggle with the private insurance company to get Chance's cochlear implants covered started 7 years ago.
Read the full Paxton Family story on the Catalyst Center website.
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Updated Catalyst Center Online Chartbook Provides Data on Coverage and Financing of Care for CYSHCN
In September, we announced our enhanced online state data Chartbook on coverage and financing of care for children and youth with special health care needs (CYSHCN) for each state, D.C., and Puerto Rico. The Catalyst Center Chartbook combines data from more than 15 respected sources to provide you with the data you need to make the case for improving coverage and financing of care for CYSHCN.
In addition to updated existing data, the Chartbook now includes several new indicators, most notably a section on state performance toward the achievement of the six core Healthy People 2010 performance outcomes for CYSHCN.
Stay tuned for an upcoming announcement from the Catalyst Center, alerting you to our update of the relevant Chartbook indicators when the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) survey data is publicly released this winter. You can also sign up for direct updates on the NS-CSHCN and the National Survey of Children's Health (NS-CH) from the Data Resource Center for Child and Adolescent Health at http://www.childhealthdata.org/home/join.
Have you used the Chartbook in your efforts to make the case for improving coverage and financing of care for CYSHCN? Let us know - you may find your work highlighted in a future issue of Catalyst Center Coverage.
Explore the Chartbook at http://www.data.catalystctr.org
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Children in Foster Care Are Children with Special Health Care Needs
According to a report by the American Academy of Pediatrics (AAP), "children and adolescents in foster care have a higher prevalence of physical, developmental, dental, and behavioral health conditions than any other group of children."1 Due to the increased risk for and prevalence of health issues, virtually all children in foster care, even the healthiest, meet the Maternal and Child Health Bureau (MCHB) definition of a child with special health care needs: those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.2
Read full article Children in Foster Care are Children with Special Health Care Needs on Catalyst Center website
1American Academy of Pediatrics. (2005). Fostering health: Health care for children and adolescents in foster care (2nd ed), pg. ix. Retrieved Oct. 26, 2011 from http://www.aap.org/fostercare/FosteringHealth.htm
2McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1):137-140, pg. 138.
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To learn more about the financing strategies in each of these areas, click the boxes below.
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Is there a topic related to coverage and financing of care for CYSHCN that you would like us to address in a Coverage article? If so, please email Meg Comeau, Catalyst Center Project Director, with your suggestions.
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Meet the Two Newest Members of Our Team
We would like to introduce two new members of the Catalyst Center team: Beth Dworetzky and Rose Hamershock.
You may already know Beth Dworetzky, B.S., M.S., from her work as Project Director for the Massachusetts Family-to-Family Health Information Center at the Federation for Children with Special Needs. Beth's in-depth understanding of health care policies and issues affecting children and youth with special health care needs (CYSHCN) is an invaluable asset in her new role as Assistant Director for the Catalyst Center. Beth researches issues of health care financing, how they affect health care coverage for CYSHCN, provides research on and responses to technical assistance questions by stakeholders, and regularly contributes to Week in Review and Catalyst Center Coverage.
Rose Hamershock joins the Catalyst Center as a research assistant. She has a B.S. in mathematics from Muhlenberg College with a concentration in biology. She is currently pursuing her M.A. in biostatistics from Boston University. Prior to joining the Catalyst Center, Rose was a participant in the National Science Foundation-funded Research Education for Undergraduates at the Virginia Bioinformatics Institute at Virginia Tech and participated in the Summer Institute for Training in Biostatistics at Boston University. In addition to providing help with technical assistance questions, Rose will play an integral role in conducting and analyzing the results of a Catalyst Center research project to determine the effects of Medicaid Buy-In programs in two states for CYSHCN and their families.
You can find a list of our staff, together with short bios, on the "Meet the Team" page on the Catalyst Center website.
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Thoughts on Thanksgiving from the Catalyst Center
This Thanksgiving season, all of us at the Catalyst Center would like to take the time to share what we are thankful for. First and foremost, we are thankful to you for allowing us to be a frequent invader of your inbox. We hope our incursions are useful to you! The continued interest you've shown in our work and the helpful feedback you've provided are vital to our success. We appreciate that so many of you have taken the time to let us know that our materials have helped advance your efforts on behalf of children and youth with special health care needs. We look forward to continuing to hear both positive feedback, which lets us know we're on the right track, and constructive criticism, which helps us be responsive to your needs.
Below are thoughts from some of the Catalyst Center team on what we are thankful for:
I am thankful for the provision in the Affordable Care Act (ACA) that in 2014 will allow youth who have aged-out of the foster care system to continue their Medicaid coverage until they turn 26. - Sheila Phicil, Research Assistant
I'm thankful for a supportive community of knowledgeable coworkers and partners who care passionately about the health and well-being of all children. You inspire me! - Edi Ablavsky, Communications Director
I'm thankful for the provision in the Affordable Care Act (ACA) that allows me to keep my young adult son with complex health needs on our family health plan. - Beth Dworetzky, Assistant Director
I'm thankful to be part of such a wonderful team and to have the opportunity to serve others through work that I love. I'm also grateful to be reminded that "thanksgiving" is an action word that is not limited to a single day. - Meg Comeau, Director
I am thankful for the chance to join the Catalyst Center, which has expanded my knowledge, deepened my compassion, and sparked my interest in research surrounding financing of care for CYSHCN. - Rose Hamershock, Research Assistant
What are you thankful for, as it relates to CYSCHN? Post your thoughts on our Facebook page. |
Announcements and Events
Got Transition Radio Episode 3: Healthcare Transition & College- It Doesn't Have to Be Learned the Hard Way! Part 2
Got Transition?
Wednesday, November 30, 2011 3:00 - 3:30 PM EST
Mallory Cyr, Youth Coordinator for Got Transition? the National Health Care Transition Center, will share her experience planning for college and talk about all the things she learned along the way. Register for this episode of the radio show event. Listen to past Got Transition? broadcasts.
Family Advocacy and Involvement in Title V Programs
The Alabama Department of Public Health
December 2, 2011 12:00 PM - 1:30 PM EST Rylin Rodgers, State Coordinator for Family Voices of Indiana, Family Discipline Coordinator at the Riley Child Development Center, and nationally recognized family leader, will discuss the skills family advocates need to partner with Title V programs, their roles as advocates for maternal and child health polices, and successful partnership models. Register for this satellite conference and live webcast.
Note: State Title V programs include a measure for family participation in children with special health care needs programs. Visit the Catalyst Center State-at-a-Glance Chartbook to see the Family Involvement score for each state or visit the Title V Information System for a snapshot of each indicator that contributes to a state's overall score.
Prematurity Prevention Symposium: Examining National, State, Clinical and Community Efforts
January 19-20, 2012, Omni Shoreham Hotel, Washington, D.C
This symposium, hosted by the March of Dimes in collaboration with the American College of Obstetricians and Gynecologists, American Academy of Pediatrics, American Academy of Family Physicians, American College of Nurse-Midwives, and the Association of Women's Health, Obstetric and Neonatal Nurses is an opportunity for health care providers, health purchasers, health insurers, policy makers, public health personnel, concerned citizens, and other stakeholders is an opportunity to learn about prevention strategies, share best practices, and participate in collaborative problem solving. This two-day event will also be the official launch of the Prematurity Prevention Network, a global initiative to prevent prematurity. Learn more about the symposium, application for poster sessions, and the Prematurity Prevention Resource Center.
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Recent Media Highlights
Resources on Deficit-Reduction Plans
The Kaiser Family Foundation
November 17, 2011
Hopes are rapidly dimming that the Super Committee will reach an agreement on a debt-reduction package before its mid-week deadline. So what might happen now for Medicare, Medicaid and other health-related programs? The Kaiser Commission on Medicaid and the Uninsured and the Program on Medicare Policy, projects of the Kaiser Family Foundation, have written numerous summaries and comparisons, policy analyses, issue briefs, and other materials about various deficit-reduction plans. Topics include discussions about how the repeal of the Affordable Care Act (ACA) and funding Medicaid as a block grant will affect each state, and the importance of Medicare and Medicaid for individuals who are dually eligible. Access these materials.
28 States, DC Cut $1.7B in Mental Health Funding
By Matt Sedensky
Associated Press
November 10, 2011
The National Alliance on Mental Illness (NAMI) reports that states have been cutting their budgets for mental health services over the past three years. The end of the enhanced Federal Medical Assistance Percentage (FMAP) that each state received to bolster its Medicaid program, coupled with decreases in state mental health budgets, and the disparity in how states approach the provision of mental versus medical health services, has resulted in loss of mental health services for children and adults with special mental health needs. To compensate for loss of the enhanced FMAP, some states have moved money into their Medicaid programs. According to NAMI, this has resulted in further reductions or loss of mental health services, such as case management, for individuals who are not eligible for Medicaid and increased waiting lists for other services, such as housing for individuals with mental health needs. Read the November 2011 NAMI report, State Mental Health Cuts: The Continuing Crisis.
Low-income State Workers Begin to Gain Access to Children's Health Insurance Program
By Sara Barr
The Washington Post
November 6, 2011
Prior to the passage of the Affordable Care Act (ACA), state employees who were income eligible for their state's Children's Health Insurance Program (CHIP) were barred from enrolling their children. As a result, some children were not receiving the comprehensive services they needed through state health insurance plans. Additionally, some families experienced financial hardship paying their share of the health plan's premiums. A provision of the ACA lifts this ban for states that do not decrease the amount they contribute towards employees' health premiums, or who can demonstrate the employees' premiums cause financial hardship. The Centers for Medicare and Medicaid Services (CMS) has approved the CHIP option for state employees in Alabama, Kentucky, Montana, Pennsylvania, and Texas. Georgia, currently waiting for CMS approval, will be the sixth state to utilize this provision of the ACA.
CMS Survey Shows High Satisfaction Rates for Medicaid and CHIP
CMS Office of Public Affairs
November 8, 2011
The Centers for Medicare and Medicaid Services (CMS) commissioned a survey to learn about family satisfaction with the health care services their children receive through Medicaid or the Children's Health Insurance Program (CHIP). Of the almost 2,000 families surveyed, every family had income less than 250% of the federal poverty level (for example, less than $55,875/year for a family 4). One-third of the children were enrolled in Medicaid or CHIP, one-third were covered by a parent's employer-sponsored health insurance, and one-third were uninsured or had been uninsured during the last year. Families whose children were covered by Medicaid or CHIP reported they were very satisfied with access to and the quality of care provided to their children. Overall, families whose children were enrolled in these public health programs were more satisfied (66%) with their children's health care services than families whose children had employer-sponsored health insurance (48%). Read the CMS report for more information about the survey methods, demographics, barriers to enrollment, outreach and enrollment efforts, and family preferences for learning about Medicaid and CHIP.
Faces of Medicaid
The Kaiser Commission on Medicaid and the Uninsured
November 2011
Over the past year, the Kaiser Commission on Medicaid and the Uninsured interviewed Medicaid beneficiaries throughout the country. Visit this interactive guide to meet the families, hear their stories, see state data, and learn about the pathways to Medicaid eligibility in each state. You can also hear about preventative health services that ensure children's overall health and home health services that enable children with complex health needs to live at home. Download the Faces of Medicaid booklet.
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The Catalyst Center is a national technical assistance and research 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 www.catalystctr.org or
contact Meg Comeau, Project Director at mcomeau@bu.edu.
The Catalyst Center is funded under grant #U41MC13618 from the
Maternal and Child Health Bureau, Health Resources and Services Administration
US Department of Health and Human Services.
The Catalyst Center
Health & Disability Working Group
Boston University School of Public Health
715 Albany Street
Boston, MA 02118-2526
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