Comprehensive Care

Comprehensive Care in a Medical Home

• Care is delivered or directed by a well-trained physician who is able to manage and facilitate essentially all aspects of care.
• Ambulatory and inpatient care for ongoing and acute illnesses is ensured, 24 hours a day, 7 days a week, 52 weeks a year.
• Preventive care is provided that includes immunizations, growth and development assessments, appropriate screenings, health care supervision, and patient and parent counseling about health, safety, nutrition, parenting, and psychosocial issues.
• Preventive, primary, and tertiary care needs are addressed.
• The physician advocates for the child, youth, and family in obtaining comprehensive care and shares responsibility for the care that is provided.
• The child’s or youth’s and family’s medical, educational, developmental, psychosocial, and other service needs are identified and addressed.
• Information is made available about private insurance and public resources, including Supplemental Security Income, Medicaid, the State Children’s Health Insurance Program, waivers, early intervention programs, and Title V State Programs for Children With Special Health Care Needs.
• Extra time for an office visit is scheduled for children with special health care needs, when indicated. ¹

Web sites/ Organizations
Ability On-Line Support Network: www.ablelink.org/public/default.htm
Ability On-Line is an electronic mail system that connects young people with disabilities or chronic illness to disabled and non-disabled peers and mentors.

American Council of the Blind: www.acb.org
The Council strives to improve the well-being of all blind and visually impaired people by: elevating the social, economic and cultural levels; improving educational and rehabilitation facilities/opportunities; cooperating with the public and private institutions and organizations concerned with blind services; encouraging and assisting them to develop their abilities and conducting a public education program to promote greater understanding of blindness and the capabilities of blind people.

American Foundation for the Blind: www.afb.org
The American Foundation for the Blind is dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired.

American Society for Deaf Children: www.deafchildren.org
ASDC is a national organization of families and professionals committed to education, empowering, and supporting parents and families to create opportunities for their children who are deaf and hard of hearing in gaining meaningful and full communication access, particularly throught the competent use of sign language, in their homes, schools, and communities.

Association of Birth Defect Children, Inc: www.birthdefects.org
Birth Defect Research for Children, Inc. (BDRC) is a 501(c)(3) non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children.

Assuring Cultural Competence in Health Care: www.omhrc.gov/clas/
Through the Office of Minority Health, this project makes recommendations for national standards for culturally and linguistically appropriate services (CLAS) in health care.

Band-Aids and Blackboards: www.lehman.cuny.edu/faculty/jfleitas/bandaides/
This is an incredibly interactive site for children with chronic diseases and their families. The site promotes understanding and acceptance of chronic diseases and uses stories told by children and their families to inform others. It has wonderful stories and hints to assist children in coping with serious illnesses and is very user friendly.

The Faces of Medicaid: The Complexities of Caring for People with Chronic Illnesses and Disabilities: www.chcs.org/publications3960/publications_show.htm?doc_id=214265
What is Medicaid?
Who Qualifies for Medicaid?
What Services do People on Medicaid Use?
What Does Medicaid Cost?
What is Managed Care?
What is Medicaid Managed Care
Medicaid Managed Care: The Challenges for People with Special Health Care Needs
An Introduction to the Issues

Center for Health and Health Care in Schools: www.healthinschools.org/about.asp
CHHCS was established to explore ways to strengthen the well being of children and youth through effective health programs and health care services in schools.

Center for Healthier Children, Families and Communities: healthychild.ucla.edu/
The Center's mission is to improve society's ability to provide children with the best opportunities for health and well-being, and the change to assume productive roles within families and communities.

Children's Health Insurance Information (eg, SCHIP, Medicaid): www.aap.org/advocacy/schip.htm
This site is intended to provide materials of interest to various audiences regarding the passage of SCHIP, also known as Title XXI, as part of the Balanced Budget Act of 1997.

Commonwealth Fund Survey of Parents With Young Children: www.cmwf.org/surveys/surveys_show.htm?doc_id=240205
The Commonwealth Fund is a private foundation that supports independent research on health and social issues and makes grants to improve health care practice and policy. The Fund is dedicated to helping people become more informed about their health care, and improving care for vulnerable populations such as children, elderly people, low-income families, minority Americans, and the uninsured.

CysticFibrosis.com: www.cysticfibrosis.com
CysticFibrosis.com is an internet community for cystic fibrosis patients, families and loved ones offering everything from basic medical definitions to daily encouragement to Cystic Fibrosis Centers nationwide.

Department of Health and Human Services:
www.hhs.gov/l
The Department of Health and Human Services is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

Epilepsy Foundation: www.efa.org
The Epilepsy Foundation (formerly the Epilepsy Foundation of America)® is the national organization that works for people affected by seizures through research, education, advocacy and service.

The Family Village - Early Intervention Resources: www.familyvillage.wisc.edu/education/ei.html
A global community of disability-related resources. This menu item offers links to early intervention resources.

Family Voices: familyvoices.org
This site is where advocates of children with disabilities join to offer stories, current events, links, and opportunities for others to help.

Individuals with Disabilities Education Act (IDEA): www.ideapolicy.org/ the policymaker partnership for IDEA or www.ed.gov/offices/OSERS/Policy/IDEA including speeches, memos, updates,and regulations surrounding IDEA.

Institute for Child Health Policy: www.ichp.ufl.edu/
Our goal is to research, evaluate, formulate, and advance health policies, programs, and systems that promote the health and well-being of children and youth in the state of Florida and nationally.

Learning Disabilities Online: www.ldonline.org
The interactive guide to learning disabilities for parents, teachers, and other professionals.

Institute for Family-Centered Care: www.familycenteredcare.org
The Institute serves as a central resource 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.

Maternal and Child Health Bureau: www.mchb.hrsa.gov/
The final purpose of the Bureau is to serve all children, to try to work out standards of care and protection which shall give to every child his fair chance in the world.

Muscular Dystrophy Association: www.mdausa.org
The Muscular Dystrophy Association is THE source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families.

National Association for Hospitals and Related Institutions: www.childrenshospitals.net/
NACHRI is a not-for-profit membership organization of children's hospitals, large pediatric units of medical centers and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses.

National Association for the Education of Young Children: www.naeyc.org
The National Association for the Education of Young Children (NAEYC) is the nation's largest and most influential organization of early childhood educators and others dedicated to improving the quality of programs for children from birth through third grade.

National Center for Education in Maternal and Child Health: www.ncemch.org
The National Center for Education in Maternal and Child Health provides national leadership to the maternal and child health community in three key areas-program development, policy analysis and education, and state-of-the-art knowledge-to improve the health and well-being of the nation's children and families.

National Cystic Fibrosis Foundation: www.cff.org
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

National Down Syndrome Society: www.ndss.org
Through education, research and advocacy, the National Down Syndrome Society works to ensure that all people with Down syndrome have the opportunity to achieve their fullest potential.

National Information Center for Children and Youth with Disabilities: www.nichcy.org
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Our special focus is children and youth (birth to age 22).

National Institute of Diabetes and Digestive and Kidney Diseases: www.niddk.nih.gov
The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.

National Institutes of Health: www.nih.gov
The NIH mission is to uncover new knowledge that will lead to better health for everyone

National Institute of Neurological Disorders: www.ninds.nih.gov
The mission of NINDS is to reduce the burden of neurological disease-a burden borne by every age group, by every segment of society, by people all over the world.

National Multiple Sclerosis Society: www.nmss.org
The mission of the National Multiple Sclerosis Society is to end the devastating effects of multiple sclerosis. Providing accurate, up-to-date information to individuals with MS, their families, and healthcare providers is central to our mission

National Organization for Rare Diseases: www.rarediseases.org
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

National Organization on Disability: www.nod.org
The National Organization on Disability promotes the full and equal participation and contribution of America's 54 million men, women and children with disabilities in all aspects of life.

National Parent Information Network (NPIN): npin.org/
The National Parent Information Network (NPIN) is a project of the ERIC system, which is administered by the National Library of Education in the U.S. Department of Education. NPIN is designed and maintained by two ERIC clearinghouses: the ERIC Clearinghouse on Urban Education at Teachers College, Columbia University, New York City; and the ERIC Clearinghouse on Elementary and Early Childhood Education at the University of Illinois at Urbana-Champaign.

National Rehabilitation Information Center For Independence: www.naric.com
For 20 years, the staff of the National Rehabilitation Information Center (NARIC) has collected and disseminated the results of federally funded research projects. NARIC's literature collection, which also
includes commercially published books, journal articles, and audiovisuals, averages around 200 new documents per month.

National Spinal Cord Injury Association: www.spinalcord.org
The National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to helping the hundreds of thousands of Americans coping with the results of spinal cord injury and disease.

Office of Special Education & Rehabilitative Services (OSERS): www.ed.gov/offices/OSERS/
OSERS supports programs that help educate children and youth with disabilities, provides for the rehabilitation of youth and adults with disabilities and supports research to improve the lives of individuals with disabilities.

OMIM (Online Mendelian Inheritance in Man): www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
This database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by NCBI, the National Center for Biotechnology Information.

PACER Center: www.pacer.org
The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

Parents Helping Parents: www.php.com
PHP is a comprehensive, not-for-profit family resource center run for and by parents of children with special needs

Pediatric Orthopaedic Surgery: www.peds-ortho.com
This site is dedicated to the musculoskeletal system of children. It's intent is to provide information pertaining to pediatric orthopaedics, including fractures, bone diseases, bone and soft tissue tumors, bone disorders, and syndromes.

Rural Institute on Disabilities: ruralinstitute.umt.edu/
The Rural Institute is part of the national network of programs funded by the Administration on Developmental Disabilities (ADD) committed to assisting in the provision of interdisciplinary training, research, service demonstration programs, leverage of funds, and information dissemination which increases and supports the independence, productivity, and inclusion into the community of persons with developmental disabilities.

Shriners Hospitals for Children: www.shrinershq.org/Hospitals/index.html
Shriners Hospitals for Children is a network of pediatric specialty hospitals, founded by the Shrine, where children under the age of 18 receive excellent medical care absolutely free of charge.

Special Needs Assistance Program for Children: www.snap4kids.org
SNAP is a national advocacy organization that promotes the awareness and acceptance of children with special needs.

Social Security Administration: www.ssa.gov
The Official Web site of the Social Security Administration.

Spina Bifida Association of America: www.sbaa.org
The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.

Starbright Foundation: www.starbright.org
Starbright represents a collaboration between pediatric medicine, entertainment, and advanced technology working together to create projects that empower seriously ill children to combat the medical and emotional challenges that they face on a daily basis.

Supplemental Security Disability Programs: www.ssa.gov/disability
Social Security Administration Office of Disability

United Cerebral Palsy Association: www.ucp.org/
Mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities.

Zero to Three: www.zerotothree.org
ZERO TO THREE's mission is to promote the healthy development of our nation's infants and toddlers by supporting and strengthening families, communities, and those who work on their behalf.

1. The medical home. Pediatrics. 2002; 110: 184-186

Last Updated August 8, 2008