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Helpful Web Sites for Families with Children with Special Health Care Needs
On this page, links to (non-MCHB) Web sites with information on:
Medical Homes | Adequate Insurance | Early and Continuous Screening | Community Integrated Systems | Family-Professional Partnership | Healthy and Ready to Work | Federal Agencies | Telemedicine for CSHCN Websites | 2010 Express National Summit Partner Organizations
American Academy of Pediatrics (AAP)
Provides information on the AAP's National Center for Medical Homes Initiatives, including the training program, National Mentorship Network, and Community Access to Child Health (CATCH) program, as well as other resources.
Center on Financing for Children with Special Health Care Needs
Provides research and analysis on financing and reimbursement strategies for CSHN. Located at the Institute for Child Health Policy.
MCH Policy Research Center
Specializes in health care issues affecting children, including those with special health care needs and those from low-income families.
The Center for Health Services Research and Policy
Conducts sponsored health services research and policy analysis on health policy issues including an analysis of contracts between Medicaid agencies and health plans.
Kaiser Family Foundation
Health policy research and reports with a particular emphasis on Medicaid and the uninsured, reproductive health and HIV.
American Association of Health Plans (AAHP)
The AAHP represents more than 1,000 HMOs, PPOs, UROs and other network based plans. Resources include conference listings and publications.The National Committee for Quality Assurance
Is dedicated to assessing and reporting the quality of managed health care plans. See their reports on specific health plans. In the future, see HEDIS CAHPS information. Publications and links.The Urban Institute
Investigates social and economic problems, including many reports on Medicaid and the Children's Health Insurance Program, and on health care coverage and access in general.
Early and Continuous Screening
March of Dimes Resource Center
Available by Internet or telephone, provides accurate, timely information and referral services to the public. Resource Center staff include trained professionals who help address personal and complex problems related to pregnancy and birth defects.National Newborn Screening and Genetics Resource Center
Genetics and Educational Materials (GEM) Database
Serves as a national resource center for information and education regarding newborn screening and genetics programs and policies.
Searchable database of materials developed by regional genetic networks, HRSA projects, publications and other materials.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
The NCBDDD seeks to promote optimal fetal, infant, and child development; prevent birth defects and childhood developmental disabilities; and enhance the quality of life for those living with a disability.
Genetic Alliance
An international coalition of families, health professionals and genetic organizations, representing more than 300 lay advocacy organizations. The Alliance works to foster the integration of genetic advances into quality healthcare, public awareness and consumer-informed public policy.
National Center for Hearing Assessment and Management
Georgetown University Center for Child and Human Development
Provides information about Communities CAN! Projects, the National Center for Cultural Competence, and other resources.
Better Lives for People with Chronic Conditions
A national initiative of the Robert Wood Johnson Foundation, contains national initiatives to improve the organization and provision of services for people with chronic health conditions.
Family-Professional Partnership
Family Voices
A national, grassroots clearinghouse, speaking on behalf of children with special needs. Resources and publications for families on healthcare issues for children with special health care needs, and relevant links.
The Family Village
A global community that integrates information, resources and communication opportunities on the Internet for persons with cognitive and other disabilities, their families, and those that provide them services and supports:
Families USA
Advocates for high-quality, affordable health care, publishes numerous policy papers and hosts the Medicaid Clearinghouse
Institute for Family-Centered Care
The Institute serves as a centralresource for both family members and members of the health care field. This site shares information, facilitates problem-solving and promotes dialogue among individuals and organizations working toward family-centered care.
Federation for Children with Special Needs
Many resources for families and professionals in Massachusetts - special education, health, mental health, legislation and more.
Federation of Families for Children's Mental Health
Provides information, resources, support and linkages to resources concerning children with mental health needs.
National Center for Cultural Competence
Exceptional Parent
Exceptional Parent Magazine's online resource, providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities and the professionals who work with them.
National Resource Center for Family Centered Practice
Provides technical assistance, staff training, research, and information about family-based programs and issues. Contains extensive bibliographies, numerous online links, online newsletter, other publications and resources.
Parents Helping Parents
A comprehensive, not-for-profit family resource center run for and by parents of children with special needs.
Parents Place
The National Information Center for Children and Youth with Disabilities
Provides information on disabilities and disability-related issues for families, educators and other professionals; focuses specifically on children and youth up to age 22.
Technical Assistance Alliance for Parent Centers
The Family Village
A global community that integrates information, resources and communication opportunities on the Internet for persons with cognitive and other disabilities, their families, and those that provide them services and supports:
Family Voices Kids As Self-Advocates
Academy for Educational Development-Disability Studies and Services Center
Interagency and Community Systems for Serving Youth with Disabilities
Provides overview of major federal services and funding streams serving youth with disabilities, with linkages to Health and Human Services, Education, Social Security Administration and Juvenile Justice.
Easter Seals Project ACTION (Accessible Community Transportation in Our Nation
TATRA (Technical Assistance on Transition and the Rehabilitation Act)
Federal AgenciesDepartment of Education
Office of Special Education and Rehabilitation Service (OSERS)
Office of Special Education Programs (OSEP)
National Institute on Disability and Rehabilitation Research (NIDRR)
Office of Educational Research and Improvement (OERI)Department of Health and Human Services:
Administration on Developmental Disabilities (ADD)
Children's Bureau, Administration for Children and Families
Child Care Bureau, Administration for Children and Families
National Center on Birth Defects and Development, Centers for Disease Control
Early Hearing Detection and Intervention (EHDI)
Head Start Bureau, Administration for Children and Families
Center of Medicare and Medicaid Services
Indian Health Service
Maternal and Child Health Bureau
National Institute of Mental Health
National Institute of Child Health and Human Development
Office of the Surgeon General
Pediatric AIDS Program, HIV/AIDS Bureau
Substance Abuse and Mental Health Services AdministrationDepartment of Agriculture
Women, Infants, and Children (WIC)Department of Defense
DefenseLink
Military Assistance Program for Families
Special Needs Network
2010 Express National Summit Partner Organizations
Health Resources and Services Administration
HRSA directs national programs that improve the Nation's health by assuring equitable access to comprehensive, quality health care for all. Through its four Bureaus, HRSA works to improve and extend life for people living with HIV/AIDS, provide primary health care to medically underserved people, serve women and children through State programs, and train a health workforce that is both diverse and motivated to work in underserved communities.
Family Voices
Consists of families from throughout the United States who have children with special health needs, as well as caregivers, professionals, and friends whose lives have been touched by these children and their families.
American Association of Pediatrics
The mission of the American Academy of Pediatrics is to attain optimal physical, mental and social health and well-being for all infants, children, adolescents and young adults. To this purpose, the AAP and its members dedicate their efforts and resources.
March of Dimes
Four major problems threaten the health of America's babies: birth defects, infant mortality, low birthweight, and lack of prenatal care. The March of Dimes is committed to the day when all babies will be born healthy.
Academy for Educational Development, Disabilities Studies and Services Center (DSSC)
AIDS Alliance for Children, Youth & Families
Agency for Healthcare Research and Quality (AHRQ)
Alabama UAP, Civitan International Research Center, University of Alabama at Birmingham
American Academy of Pediatric Dentistry (AAPD)
American College of Medical Genetics (ACMG)
American Dietetic Association (ADA)
The American Medical Women's Association (AMWA)
American Physical Therapy Association (APTA)
American Public Health Association (APHA)
American Speech-Language-Hearing Association, Clinical Issues in Speech-Language Pathology
Ambulatory Pediatric Association (APA)
American Occupational Therapy Foundation (AOTF)
Association of Maternal and Child Health Programs (AMCHP)
Association of State and Territorial Dental Directors (ASTDD)
Boling Center for Developmental Disabilities, University of Tennessee
Center for Genetics & Child Development, Dartmouth-Hitchcock Medical Center, New Hampshire
Center for Development & Disability, University of New Mexico Health Sciences Center
Center for Mental Health Services, U.S. Department of Health and Human Services
Center for Persons with Disabilities, Utah State University
Center on Disability and Community Inclusion/University of Vermont
Children and Adults with Attention Deficit Hyperactivity Disorder (CHADD)
Children's Seashore House of The Children's Hospital of Philadelphia
Center for Child Development & Development Disabilities, University of Southern California
Center on Human Development & Disability, University of Washington
Child Development Unit/Kansas UCE
Children's Hospital of Philadelphia
Cornell University Program Employment and Disability
Council on Social Work Education (CSWE)
The Detroit Institute for Children
Directors of Speech and Hearing Programs in State Health and Welfare Agencies
Eunice Kennedy Shriver Center UAP
Federation of Families for Children's Mental Health
Food and Nutrition Service, U.S. Department of Agriculture
Georgetown University Child Development Center, Georgetown University Medical Center
Provides information about Communities CAN! Projects, the National Center for Cultural Competence, and other resources.Hawaii University Affiliated Program, University of Hawaii at Manoa
Institute for Healthcare Improvement
JFK Partners, University of Colorado Health Services Center
Kennedy Krieger Institute, The Johns Hopkins University School of Medicine
Mailman Center for Child Development, University of Miami School of Medicine
Maternal and Child Health Bureau
MIND Program at Vanderbilt Medical Center/Child Development Center/Child Development Center
Munroe-Meyer Institute for Genetic & Rehabilitation, University of Nebraska Medical Center
National Association of Children's Hospitals and Related Institutions (NACHRI)
National Association of Pediatric Nurse Associates and Practitioners
National Association of Social Workers (NASW)
National Association of Pediatric Nurse Associates and Practitioners
National Association of County and City Health Officials (NACCHO)
National Hemophilia Foundation
National Mental Health Association (NMA)
Providence Children's Hospital
Riley Child Development Center
Rosalynn Carter Institute for Human Development
Rose F. Kennedy Center UCE, Albert Einstein college of Medicine, New York
School of Health, Florida International University
Shriners Hospitals for ChildrenSocial Security Administration (SSA), Office of Employment Support Programs
Society of State Directors of Health, Physical Education and Recreation
Society of Teachers of Family Medicine
Strong Center for Development Disabilities, University of Rochester Medical Center, New York
United Cerebral Palsy Associations
University Affiliated Cincinnati Center for Developmental Disorders
U.S. Department of Health and Human Services
Washington Business Group on Health (WBGH)
Westchester Institute for Human Development, Westchester Medical Center, New York
Waisman Center on Mental Retardation and Human Development at the University of Wisconsin-Madison
West Virginia University, Center for Excellence in Disabilities
Telemedicine for CSHCN Websites
University of Iowa
University of North Carolina
Children's Hospital, Pittsburgh
American Telemedicine Association
Other Resources
New England SERVE
Is a health policy, research and planning organization working to promote quality systems of care for children with special health care needs and their families. Resources include publications and related links.
The Center for Children with Special Health Care Needs
Collaborates with a variety of health care organizations, state agencies, families, and health care providers to plan and implement demonstration grants and contract projects that improve care and increase access to health education materials and community resources.
Maternal and Child Health Policy Center
Is a national center that specializes in health care issues affecting children, especially those with special health care needs.
Title V Information System
Site provides access to state and national information and data from Title V - Maternal and Child Health Bureau - programs. Program materials and relevant links.
National Information Center for Children and Youth with Disabilities
Is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals; focuses specifically on children and youth (birth to age 22) and has several useful articles and contact sheets for parents.The Institute for Child Health Policy
Focuses its attention on issues of access, utilization, cost, quality and family involvement in both our policy and program development and health services research.
The Association of Maternal & Child Health Programs
Represents state public health leaders and others working to improve the health and well being of women, children and youth, including those with special health care needs, and families.
Bright Futures
Is dedicated to providing guidelines and a practical developmental approach for child and adolescent health supervision. Resources include publications in English and Spanish and relevant Web links.
Child and Adolescent Health Measurement Initiative (CAHMI)
CAHMI provides leadership and resources for measuring and communicating information about the quality of health care for children and adolescents. Under Children with Special Health Care Needs see the Consumer Assessment of Health Plans (CAHPS). The Question Supplement will become part of the Health Plan Employer Data and Information Set (HEDIS) - standardized performance measures to compare the performance of health plans.
Bright Futures for Families
Bright Futures for Families is a national child health initiative to promote and improve the health, education, and well being of all children, families, and communities. Materials for families on child health.
Centers for Disease Control, National Center on Health Statistics
SLAITS, State and Local Area Integrated Telephone Survey, collects important health care data at State and local levels. This website includes the questionnaire for the MCHB National Survey on Children with Special Health Care Needs. Other resources include data, surveys, initiatives, and research programs.Institute for Community Inclusion (ICI), Children's Hospital, Boston
ICI is committed to developing resources and supports for people with disabilities and their families. Publications and disability resources.The Consortium
The consortium is a partnership of Georgetown University Child Development Center, Family Voices, Heller School at Brandeis University, and the Institute for Child Health Policy of the University of Florida. Consortium research projects seek to improve care systems and rehabilitation outcomes for children and youth with disabilities.