Standards for Systems of Care for Children and …

1 MARCH 2014 . Standards for Systems of care for Children and Youth with Special Health care Needs A Product of the National Consensus Framework for Systems of care for Children and Youth with Special Health care Needs Project Standards for Systems of care for CYSHCN. Acknowledgements The Association of Maternal & Child Health the project, and acknowledges their critical youth and families, including those with special Programs (AMCHP) extends its sincere thanks and input and guidance to this work. These experts health care needs. AMCHP members come from appreciation to the Lucile Packard Foundation for include the members of the national work group the highest levels of state government and include Children 's Health for their funding of this project who are listed on the following page,the project directors of maternal and child health programs, and in particular, Edward Schor, senior vice key informants listed in Appendix A, and the directors of programs for Children with special president, for his vision and support of this work.

2 State representatives who were interviewed for health care needs, and other public health leaders the project case studies. The leads for the case who work with and support state maternal and AMCHP also sincerely thanks the numerous study sites are: Debra Waldron (Iowa Department child health programs. Our members directly serve professionals at the national and state level who of Public Health); Lonnie Barnett (Michigan all women and Children nationwide, and strive to contributed their time, insights and expertise to Department of Community Health); Deborah improve the health of all women, infants, Children Garneau (Rhode Island Department of Health); and and adolescents, including those with special Christopher Born (Texas Children 's Health Plan).

3 Health care needs, by administering critical public health education and screening services, and The work of this project was led and authored by coordinating preventive, primary and specialty Karen VanLandeghem, senior advisor, AMCHP, care . Our membership also includes academic, and project director of the National Consensus advocacy and community based family health Framework for Systems of care for Children and professionals, as well as families themselves. Youth with Special Health care Needs Project;. Phyllis Sloyer, former director of the Florida Children 's Medical Services Network and AMCHP About the Foundation President, and consultant to this project; Vivian The Lucile Packard Foundation for Children 's Gabor, consultant; and Veronica Helms, program Health works in alignment with Lucile Packard manager, AMCHP.

4 Other AMCHP staff who Children 's Hospital and the child health programs of contributed to this project are: Michael Fraser, Stanford University. The mission of the Foundation former chief executive officer of AMCHP;Treeby is to elevate the priority of Children 's health, Brown, associate director, Children 's and adolescent and to increase the quality and accessibility of health; Brent Ewig, director, public policy and Children 's health care through leadership and government affairs; Caroline Stampfel, senior direct investment. Through its Program for Children epidemiologist; and Laura Goodwin, program with Special Health care Needs, the Foundation manager, who designed and edited this document.

5 Supports development of a high-quality health care system that results in better health outcomes for Children and enhanced quality of life for families. About AMCHP The Foundation is a public charity, founded in 1997. The Association of Maternal & Child Health Programs is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, Children , 2 A product of the National Consensus Framework for Systems of care for CYSHCN Project Association of Maternal & Child Health Programs National Work Group Members Terry Adirim Barbara Coulter Edwards Lynda Honberg Office of Special Health Affairs, Health Center for Medicaid, CHIP, and Family Voices Resources and Services Administration Survey & Certification, Centers for Medicare & Medicaid Services Henry T.

6 Ireys Richard C. Antonelli Mathematica Policy Research Boston Children 's Hospital, Michelle Esquivel Harvard Medical School American Academy Laura Kavanagh of Pediatrics Maternal and Child Health Bureau, Health Bruce Ardis Resources and Services Administration District of Columbia Health Services Sharon Fleischfresser for Children with Special Needs Wisconsin Department of Health Tom Klitzner and Family Services Mattel Children 's Hospital at UCLA, David Christina Bethell Geffen School of Medicine at UCLA. The Child and Adolescent Health Eileen Forlenza Measurement Initiative Colorado Department of Public Health and Environment Christopher M. Born Texas Children 's Health Plan Deborah Garneau Rhode Island Department of Health Meg Comeau The Catalyst Center, Health and Kristine Green Disability Working Group, Boston Alaska Department of Health University School of Public Health and Social Services Robert Dimand Marilyn Sue Hartzell California Department of Oregon Center for Children Health care Services and Youth with Special Health Needs.

7 Institute on Development Brenda DuHamel and Disability at Oregon Health Rhode Island Executive Office of & Science University Health and Human Services Catherine Hess Susan Dull National Academy for Children 's Hospital Association State Health Policy A product of the National Consensus Framework for Systems of care for CYSHCN Project 3. Standards for Systems of care for CYSHCN. National Work Group Members continued Colleen Kraft Jaime A. Resnick Kathleen Watters Virginia Tech Carilion School of Maternal and Child Health Bureau, Health Maternal and Child Health Bureau, Health Medicine and Research Institute Resources and Services Administration Resources and Services Administration Christopher A.

8 Kus Gina Robinson Nora Wells New York State Department of Health Colorado Department of Healthcare Family Voices Policy and Financing Michael C. Lu Maternal and Child Health Bureau, Health Sarah Hudson Scholle Resources and Services Administration National Committee for Quality Assurance Marie Y. Mann Edward Schor Maternal and Child Health Bureau, Health Lucile Packard Foundation Resources and Services Administration for Children 's Health Jeanne W. McAllister Colleen Sonosky Indiana University School of Medicine District of Columbia Department of Health care Finance Margaret A. McManus The National Alliance to Advance Bonnie Strickland Adolescent Health Maternal and Child Health Bureau, Health Resources and Merle McPherson Services Administration Retired, Maternal and Child Health Bureau, Health Resources and Fan Tait Services Administration American Academy of Pediatrics Kathleen Nolan Debra Waldron National Association of Medicaid Directors University of Iowa Children 's Hospital, Child Health Specialty Clinics Laurie Norris Center for Medicaid, CHIP, and Survey & Certification.

9 Centers for Medicare & Medicaid Services 4 A product of the National Consensus Framework for Systems of care for CYSHCN Project Association of Maternal & Child Health Programs Background Creating a comprehensive, quality system of Achieving consensus on the necessary capacity and who also require health and related services care for Children and youth with special health and performance of Systems serving CYSHCN of a type or amount beyond that required by care needs (CYSHCN) has been one of the is essential to comprehensive, quality Systems Children In a recent national survey, most challenging areas for state health leaders of care for this population of Children . A central Children with a chronic condition birth to age 18.

10 And other stakeholders such as state Title purpose of the National Consensus Framework represented approximately 15 percent of the V CYSHCN programs, health plans, private for Improving Quality Systems of care for Children entire child population in the United insurers, state Medicaid and CHIP agencies, and Youth with Special Health care Needs project pediatricians and family physicians, and families. is to develop a core set of structure and process These Standards focus on Children and youth with The Patient Protection and Affordable care Standards for Systems of care for CYSHCN, special health care needs for several reasons. Act (ACA) has further heightened this need as based on the research and national consensus Federal requirements under Medicaid require state states extend coverage to millions of uninsured among a diverse group of stakeholders with Medicaid agencies and their partners to identify Children and adults, design essential health expertise in their field.