Helpful Web Sites for
Families with Children with Special Heath 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
Medical
Homes
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.
Adequate
Insurance
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.
Serves as a national resource center for information and education regarding
newborn screening and genetics programs and policies.
Genetics
and Educational Materials (GEM) Database.
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
Community
Integrated Systems
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
Healthy
and Ready to Work
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)
National
Center for Self-Determination
Federal
Agencies
Department
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 Administration
Department
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 friendswhose
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.
ABC
for Health, Inc.
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)
Association
of University Centers on Disabilities (AUCD) (formerly American Association
of University Affiliated Programs for Persons with Developmental Disabilities
(AAUAP)
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
EP
(Exceptional Parents)
Eunice
Kennedy Shriver Center UAP
Federation
of Families for Children's Mental Health
Food
and Nutrition Service, U.S. Department of Agriculture
Genetic
Alliance, Inc.
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
Iowa
Leadership Education in Neurodevelopmental and Related Disabilities,
The University of Iowa, University Hospital School
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
Commission of Leadership in Interprofessional Education and Practice
National
Hemophilia Foundation
National
Mental Health Association (NMA)
Oregon
Institute on Disability and Development Child Development & Rehabilitation
Center, Oregon Health Sciences University
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 Children
Social
Security Administration (SSA), Office of Employment Support Programs
Society
of State Directors of Health, Physical Education and Recreation
Society
of Teachers of Family Medicine
Special
Olympics
STARBRIGHT
Strong
Center for Development Disabilities, University of Rochester Medical
Center, New York
United
Cerebral Palsy Associations
University
Affiliated Cincinnati Center for Developmental disorders
UCE
of Arkansas
The
UCLID Center at the University of Pittsburgh, Rangos Research Center,
Children's Hospital of Pittsburgh
U.S.
Department of Education
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
Wheelock
College
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.
MCHData.net
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
Maternal and Child Health Clearinghouse (NMCHC).
The NMCHC holds an inventory of publications, products, and materials
on maternal and child health.
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.
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