Resources

AMCHP 

AMCHP’s State Public Health Autism Resource Center (SPHARC): Is a comprehensive website for states to learn about autism activities and resources, share promising practices, link to federal and national partners and follow Combating Autism Awareness Initiative activities. SPHARC serves as a means to facilitate communication among states to learn from successes and challenges as states develop state autism plans and work to strengthen services for children, youth and families with ASD/DD. In addition, SPHARC holds technical assistance calls on subjects such as financing of care, care coordination, cultural competency, family-centered care, medical home, health information technology and transition. Each technical assistance call is recorded and made available on the SPHARC website at www.amchp.org/spharc 

AMCHP Fact Sheet: State Birth Defects Performance Measures [May 2010]: AMCHP reviewed the Title V Information System to identify states that have adopted performance measures related to birth defects surveillance. This fact sheet highlights innovative and effective ways that state Title V agencies utilize birth defects surveillance systems to improve maternal and child health.  

Environmental Scan: State Title V Program Response to Autism Spectrum Disorder and other Developmental Disabilities [November 2009]: This issue brief summarizes finding from AMCHP's environmental scan of state Title V autism activities and captures key opportunities and challenges that states are currently facing as they work to strengthen systems of care for children and youth with autism spectrum disorder and developmental disabilities. The brief specifically highlights challenges and opportunities in six areas: screening and diagnosis, care coordination/medical home, family involvement, access to services and evidence-based programs, financing of care and transition. 

Models of Care for Children and Youth with Special Health Care Needs: Promising Models for Transforming California's System of Care [November 2009]: The Lucile Packard Foundation for Children's Health commissioned the AMCHP to produce this report, which identifies promising models implemented outside of California to support the system of care for children and youth with special health care needs. 

Data Resource Center 

The Data Resource Center for Child and Adolescent Health (DRC) website, created by the Child and Adolescent Health Measurement Initiative (CAHMI), is sponsored by the Maternal and Child Health Bureau and provides free, easy access to a variety of national and state level data on children’s health topics, including information about families of children with special health care needs (CSHCN). For more information on the DRC or to request technical assistance, please visit childhealthdata.org. 

How many CYSHCN have families who spend 11 or more hours a week providing health care? How many CYSHCN have families who are partners in decision making and satisfied with the services their children receive? Find state level data on how often families eat meals together, read to their children, go on family outings and share ideas with one another. Or, learn about how special health care needs impact family out-of-pocket medical expenses and parental stress 

New Special Health Care Needs Disparities Snapshot: Compare 2007 National Survey of Children’s Health data profiles of CYSHCN and non-CYSHCN within your state.
 

MCH Library 

MCH Library at Georgetown University: Children and Youth with Special Health Care Needs Knowledge Path: This knowledge path offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and special education, financing services, rehabilitation, screening, and transition to adulthood. 

The MCH Library also offers Family Resource Centers, a list of organizations that parents can contact to get involved with their child's health care and education services providers; and the Community Services Locator, an online directory for finding community services for children and families. The Locator contains sections on education/special needs and on family support groups, as well as other topics. 

Additional MCH Library resources:

  • Title V Toolbox for Family Participation: A collection of state materials and program models to strengthen family involvement in state MCH and children with special health care needs programs.
     
  • Family Voice's Bright Futures for Families, Family to Family Health Information Centers (F2F HICs) and Family Voices in Your State.
     
  • Federation for Children with Special Needs (FCSN): Presents resources for parents and parent organizations working together on behalf of children and youth with special health care needs and their families. FCSN operates a parent center in Massachusetts that offers a variety of services to parents, parent groups, and others who are concerned about children with special health care needs.
     
  • Mental Health Needs of Low-Income Children with Special Health Care Needs [April 2009]:This issue brief summarizes a Child Health Insurance Research Initiative (CHIRI™) study that compared the prevalence of mental health problems among CSHCN to family perceptions of mental health needs.
  • Antonelli RC, McAllister JW, Popp J. 2009. Making Care Coordination a Critical Component of the Pediatric Health System: A Multidisciplinary Framework. New York, NY: Commonwealth Fund. This report proposes a framework for care coordination in a high-performing pediatric health care system. The framework includes a definition of care coordination; outlines its principal characteristics, competencies, and functions; and sets forth a detailed process for its delivery. It also describes a model to implement care coordination across all health care settings and related disciplines.
     
  • MCH Organizations Database: Contains contact information for groups concerned with specific illnesses and disorders, genetic services providers, government offices and agencies, national centers for children and youth with special health care needs, networks and support groups for parents, professional associations, and providers of services and products. For organizations that focus on children with special health care needs overall, see the list, Children with Special Health Care Needs, which is compiled from the database. For condition-specific organizations, search on the name of the condition.
     
  • Parent to Parent USA (P2P USA): Presents contact information for statewide parent to parent programs. The programs provide emotional support and information to families of children and youth with special health care needs. In particular, the programs match parents seeking support with trained and experienced veteran parents who have shared the experience of disability in the family. P2P USA also offers technical assistance and resources to parents interested in building, improving, and evaluating a program.
     
  • Sibling Support Project: Presents information about its program and workshops for the siblings of children and youth with special health care needs and developmental needs. Includes online discussion groups for siblings and for parents of the siblings. Also presents publications for purchase that are for and about siblings.
     

MCH Training Program Grantees

The following are learning opportunities and/or resources developed by MCH Training Program Grantees that address the areas of family involvement, medical home and children/youth with special health care needs.  

o    Cultural Competency: Family-Centered Culturally Responsive Care

o    Communication: Fostering Family-Centered Communication 

  • Distance Learning opportunities from the University of Massachusetts Medical School Shriver Center, including “Cultural Competency,” “Children with Special Health Care Needs,” and “Family Centered Care.”
     

Others

  • Family Voices: Aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, they provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. 
     
  • Maternal and Child Health Bureau (MCHB) : Is part of the Health Resources and Services Administration, U.S. Department of Health and Human Services and is responsible for meeting the needs of the maternal and child health populations of the United States and its jurisdictions. 
     
  • The Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs: The Catalyst Center is dedicated to improving health care coverage and financing for CYSHCN. Visit their Website to find publications, products, answers to technical assistance questions, research and resources. 
     
  • American Academy of Pediatrics (AAP): Is an organization of pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents and young adults. The AAP provides information, policy statements, practice guidelines, child health resources and other publications from leading child health experts.
     
  • Champions for Inclusive Communities: A national center designed to support communities in organizing services for families of CYSHCN. 
     
  • Association of University Centers on Disabilities (AUCD): Is a membership organization that supports and promotes a national network of university-based interdisciplinary programs consisting of the University Centers for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental Disabilities (LEND) Programs, and the Intellectual and Developmental Disability Research Centers (IDDRC). These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.