March 2006

General Resources

Introduction

This knowledge path has been compiled by the Maternal and Child Health Library at Georgetown University. It points to recent, high-quality resources for health professionals and families about caring for children and adolescents with special health care needs. The volume of materials for and about children and adolescents with special health care needs and their families is vast. In this knowledge path, we aim to identify the best resources for each topic. Our criteria for evaluating resources include the accuracy and currency of the information, the authority of the creator of the resource, the objectivity of the material, how well the resource covers the topic, and how easy the resource is to access or obtain. We have tried to identify resources that are available electronically, since electronic information can be accessed by most users at any time and by those without Internet connections in the home or the workplace at the nearest public library or medical facility. We have also tried to identify those resources that serve as the hub for high-quality information on a particular topic (i.e., Web link pages or bibliographies that direct users to other high-quality resources on a topic).

Related knowledge path topics:
Asthma in children and adolescents
Autism spectrum disorders
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
Diabetes in children and adolescents
Locating community-based services to support children and families

Health Hotlines

• Health Hotlines. Contains information about health-related organizations that offer toll-free telephone services in English and Spanish. Health Hotlines is a service of the National Library of Medicine.
  

  
  
  

Web Sites: A-Z

• Agency for Healthcare Research and Quality (AHRQ). Provides evidence-based information on health care outcomes; quality; and cost, use, and access. Links to statistical briefs, conference and workshop summaries, evidence reports, and research findings about children and adolescents with special health care needs. Offers access to the National Guideline Clearinghouse and the National Quality Measures Clearinghouse. AHRQ is part of the Department of Health and Human Services (DHHS). Information from AHRQ's research helps people make more informed decisions and improve the quality of health care services. Resources include

  Access to needed medical care among children under 18 years of age with special health care needs, 2002. (2005).

  Child Health Care Quality Toolbox: Measuring Performance in Child Health Programs. Contains tips and tools to help state and local policymakers and program administrators evaluate Medicaid, the State Children's Health Insurance Program (SCHIP), Title V, and other health care service programs for children and adolescents, including those with special health care needs.

  Utilization and expenditures for children with special health care needs. (2006).

• Centers for Disease Control and Prevention (CDC). Contains information for health professionals and consumers about diseases, disabilities, and health risks and provides access to publications, databases, and other products, including many in Spanish. CDC's A to Z Index is a useful navigation tool for this information-dense Web site. As part of the Department of Health and Human Services (DHHS), CDC develops and implements infectious and chronic disease prevention and control efforts, environmental health initiatives, and health promotion and education activities to improve the health of Americans.

  The CDC center that focuses on children and adolescents with special health care needs is

  National Center on Birth Defects and Developmental Disabilities (NCBDDD). Contains journal articles, fact sheets, conference proceedings, and other publications and information about its surveillance, research, and technical assistance activities. NCBDDD seeks to promote optimal fetal, infant, and child development; prevent birth defects and childhood developmental disabilities; and enhance quality of life and prevent secondary conditions among children, adolescents, and adults who are living with a disability. Also see NCBDDD's resources and initiatives about developmental screening.

• Center for Children with Special Needs. Presents a wealth of resources specific to Washington State as well as diagnosis-specific health information and tools to support professionals and families caring for children and adolescents with special health care needs everywhere. The center is a program of Children's Hospital and Regional Medical Center in Seattle, Washington. In addition to its electronic newsletter, the center offers many publications, including

  Child care and the Americans with Disabilities Act (ADA): Opportunities and resources for child care providers and families. (2004).

  Employment resources for youth with disabilities. (2005).

  How families can find emotional support. (2005).

• DisabilityInfo.gov. Presents a large set of annotated links to government resources for people with disabilities, their families, employers, health and human service professionals, and other community members. Topics include civil rights, community life, education, employment, health, housing, income support, technology, and transportation. DisabilityInfo.gov is a collaborative effort among several federal agencies.
  
  
• Easter Seals. Contains resources about making homes, schools, child care centers, workplaces, and communities more accessible and supportive for children, adolescents, and adults with disabilities and their families. Easter Seals assists children, adolescents, and adults with disabilities and their families through a nationwide network of service sites that provide medical rehabilitation, job training and employment, child care, adult day services, recreation, and advocacy services. Contact information is provided for local service sites.
  
  
• Family Village. Contains a wealth of resources for people with cognitive and other disabilities, their families, and their service providers. Includes resources about specific diagnoses and general disability-related topics, such as adaptive products and technology, adaptive recreational activities, education, legal issues, respite care, worship, and disability-related media and literature. Also offers communication connections for individuals or families that include online discussion groups, chat rooms, and parent-to-parent matching programs. Family Village is part of the Waisman Center at the University of Wisconsin-Madison.
  
  
• Healthy People 2010. Describes this national health promotion and disease prevention initiative created by a broad coalition of experts from many sectors to improve the health of all Americans, eliminate disparities in health, and improve years and quality of healthy life. Healthy People contains 467 objectives outlined in the complete text (online and searchable), Healthy People 2010: Understanding and improving health, 2nd ed. (2000). Chapter 6 presents objectives that focus on disabilities and secondary conditions. Scan the online table of contents for objectives in other chapters that address specific conditions and programs to improve outcomes for children and adolescents with special health care needs. In addition to the text, Healthy People provides background information on the initiative; data; a list of the Healthy People partners and related sites; and other Healthy People publications. It is coordinated by the Office of Disease Prevention and Health Promotion (ODPHP).
  
  
• March of Dimes (MOD). Contains fact sheets for families, research funding information, nursing modules, statistics, and other resources about birth defects, newborn screening, genetics, and pregnancy-related topics. MOD responds to questions from health professionals and the public and offers a publications catalog with print and electronic resources in English and Spanish. Publications include

  March of Dimes global report on birth defects: The hidden toll of dying and disabled children. (2006).

  State report card on testing for March of Dimes recommended newborn screening conditions. (2004).

• National Children's Study. Contains information about this study to examine the effects of environmental influences on the health and development of more than 100,000 children and adolescents across the United States, following them from before birth until age 21. Researchers plan to examine such factors as the food children eat, the air they breathe, their schools and neighborhoods, the frequency with which they visit health professionals, and even the composition of the dust in their homes. Study scientists also plan to gather biological samples from both parents and children and to analyze them for exposure to environmental factors. The study is seeking information to improve the prevention and treatment of such health problems as autism, birth defects, diabetes, heart disease, and obesity. The National Institute of Child Health and Human Development (NICHD) and a consortium of federal agencies are conducting the study.
  
  
• National Dissemination Center for Children with Disabilities (NICHCY). Provides a wealth of resources for families, educators, and other professionals on disabilities and disability-related issues that include specific disabilities, early intervention, special education and related services, individualized education programs, family issues, education rights, and transition to adult life. State resource sheets list up-to-date contact information for state agencies and organizations; disability-specific organizations, parent groups and parent training and information centers, and other organizations within each state that address disability-related issues. Materials are available in English and Spanish. NICHCY is funded by the Department of Education (ED).
  
  
• National Institutes of Health (NIH). Contains a wealth of resources for those seeking information about children and adolescents with special health care needs, including a program summary with links to each of NIH's 27 institutes and centers and a health information section with an extensive list of links to information about health conditions, consumer health publications, drug information, research studies, and literature references. NIH also sponsors several databases. NIH is the principal medical research arm of the federal government. Also see the following NIH-supported resources: ClinicalTrials.gov, Computer Retrieval of Information on Scientific Projects (CRISP), MedlinePlus, OMIM™ Online Mendelian Inheritance in Man™, and PubMed.
  
  
• National Organization for Rare Disorders (NORD). Provides newsletters, position papers, and other literature about rare disorders for patients, families, and health professionals. Operates medication assistance programs and a patient networking program for those affected by rare disorders for whom no organized support groups exist. Maintains online databases about rare disorders and organizations that assist people affected by rare disorders. Also provides links to information about medications developed to treat rare disorders. NORD is a federation of voluntary health organizations committed to the identification, treatment, and cure of rare disorders. Recent publications include

  NORD resource guide, 5th ed. (2005). Description and ordering information.

  
  
  

Additional Electronic Publications

• Cohen J. 2003. Disability etiquette: Tips on interacting with people with disabilities, rev. ed. Jackson Heights, NY: United Spinal Association. This booklet provides basic tips for interacting more effectively with people with disabilities.
  
  
• Office of the Surgeon General. 2002. Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Rockville, MD: Office of the Surgeon General. This conference report identifies priority goals and action steps set forth by the mental retardation (MR) community at a national conference held December 5-6, 2001, in Washington, DC.
  
  
• Office of the Surgeon General. 2005. Surgeon General's call to action to improve the health and wellness of persons with disabilities. Rockville, MD: Office of the Surgeon General. This report describes the particular challenges to health and well-being faced by persons of all ages with disabilities and identifies four goals that, together, can help people with disabilities experience full, rewarding, and above all healthy lives as contributing members of their communities.
  

  
  
  

Print Publications

See MedlinePlus for a medical encyclopedia, dictionary, and physician directory online.

• Allen PJ, Vessey JA, eds. 2004. Primary care of the child with a chronic condition, 4th ed. St. Louis, MO: Mosby. Description and ordering information.
  
  
• Downing JE. 2005. Teaching communication skills to students with severe disabilities, 2nd ed. Baltimore, MD: Paul H. Brookes Publishing Co., Inc. Description and ordering information.
  
  
• Mars-Proietti L, ed. 2005. Complete directory for people with disabilities 2006: A comprehensive source book for individuals and professionals, 14th ed. Millerton, NY: Grey House Publishing. Description and ordering information.
  

  
  
  

Databases

The databases listed below are excellent tools for identifying additional literature and research, organizations, Web resources, programs, and other information about the care and development of children and adolescents with special health care needs. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.

Also see the Americans with Disabilities Act (ADA) Technical Assistance Program, assistivetech.net, the Education Resources Information Center (ERIC) Database, the Education Resource Organizations Directory (EROD), Exceptional Parent (EP), the Family Center on Technology and Disability (FCTD), the Genetic Alliance, healthfinder®, the National Organization for Rare Disorders (NORD), the National Rehabilitation Information Center (NARIC), OMIM™ Online Mendelian Inheritance in Man™, Parents Helping Parents: Helping Children with Special Needs, and the Self-Help Group Sourcebook Online. In addition, several databases are listed in the data section.

• ClinicalTrials.gov. Provides access to information about clinical research studies for a wide range of diseases and conditions. Included are a summary of the study purpose, recruiting status, patient participation criteria, trial location, and contact information. To identify studies on the topic, enter the name of the chronic illness or disability in the search field or browse the list of studies in order by condition. ClinicalTrials.gov is a service of the National Institutes of Health (NIH) and was developed by the National Library of Medicine (NLM).
  
  
• Cochrane Database of Systematic Reviews. Presents systematic reviews of health care interventions internationally. View the list of topics to identify reviews in your area of concern. Access to the full-text article requires a subscription that is available in many hospital and university health sciences libraries. The database is published by the Cochrane Collaboration, an international nonprofit organization based in the United Kingdom.
  
  
• Computer Retrieval of Information on Scientific Projects (CRISP). Contains information about federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. Search CRISP to identify scientific concepts, emerging trends and techniques, or specific projects or investigators. Type the name of the chronic illness or disability in the search term box of the Query Form and click on Submit Query to get your results. View the CRISP thesaurus for help with search terms. The database is maintained by the Office of Extramural Research at the National Institutes of Health (NIH).
  
  
• Database of Abstracts of Reviews of Effects (DARE). Contains summaries of systematic reviews that have met strict quality criteria. Included reviews must be about the effects of interventions. Each summary also provides a critical commentary on the quality of the review. Search the database by typing the name of the condition in the search term box. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.
  
  
• Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains several databases to collect, manage, and disseminate knowledge about maternal and child health, with special emphasis on knowledge gained from initiatives and programs supported by the Maternal and Child Health Bureau (MCHB). The databases are

  MCHLine®. Comprises an online catalog of materials in the Maternal and Child Health Library. A selection of recent library items are listed in several bibliographies focusing on various aspects of caring for children and adolescents with special health care needs.

  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 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.

  MCH Projects Database. Comprises an online catalog of projects funded by the Maternal and Child Health Bureau (MCHB), many of which focus on children with special health care needs. To identify projects, enter the term "children with special health care needs" in the simple search field of the database search form and click on status: active. Since this will retrieve many records, narrow your search by adding terms (e.g., insurance). For condition-specific projects, search on the name of the chronic illness or disability. Several final reports from these projects are available online and include

  Capacity development and sustainability of integrated services for children with special health care needs. (2004).

  Center for Leadership in Pediatric Physical Therapy. (2004).

  Enhancing Child Health Outcomes for Children with Special Healthcare Needs (ECHO). (2004).

  Puerto Rico CISS/COG project to enhance managed care systems / Puerto Rico medical home project. (2004).

• National Guideline Clearinghouse (NGC). Contains evidence-based clinical practice guidelines and related materials for health professionals. Identify guidelines by entering the name of the condition in the search box or by browsing the database by disease/condition, treatment/intervention, or other criteria. The database is an initiative of the Agency for Healthcare Research and Quality (AHRQ).
  
  
• National Quality Measures Clearinghouse™ (NQMC™). Contains evidence-based health care quality measures and measure sets for physicians, hospitals, and health plans to evaluate and improve the quality of health care. Search for measures that target a particular disease/condition, treatment/intervention, age range, gender, vulnerable population, setting of care, or contributing organization. The database is sponsored by the Agency for Healthcare Research and Quality (AHRQ).
  
  
• PubMed. Contains over 17 million citations for biomedical articles that date back to the 1950s. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full-text articles and other related resources. For a broad search on the topic, enter the search phrase disabled children OR chronic disease. Then, click on Limits and make the following selections on the page: select a date (e.g. Published in the last 2 years); click on Humans; click on Languages: English; click on Ages: All Child; and select Tag Terms: MeSH Major Topic. Since this will yield many records, narrow your search by adding terms (e.g., insurance). For condition-specific research articles, search on the name of the chronic illness or disability. Follow the instructions above for narrowing a search by selecting Limits. Use MeSH to identify additional search terms. NLM also offers automatic PubMed searches for a wide range of chronic illnesses and disabilities via its health information service, MedlinePlus. PubMed is a service of the National Library of Medicine (NLM).
  

  
  
  

Electronic Newsletters and Online Discussion Groups

Also see Health Care Transitions, Kids As Self-Advocates (KASA) , LD Online, and the National Organization for Rare Disorders (NORD).

• Discussion Groups. The list by Assistivetech.net includes online communication opportunities for individuals with disabilities and their families. Some sites address specific health conditions, while others are for certain populations, such as parents of children and adolescents with special health care needs.
  
  
• Family Village. Offers the Coffee Shop, which lists many online communication opportunities for individuals with special health care needs and their families via disability-related mailing lists, discussion groups, family Web sites, and parent-to-parent and sibling-to-sibling matching programs. Also offers a Post Office with electronic bulletin boards to connect parents who are experiencing similar issues related to their children.
  
  
• Friday's Child. This weekly electronic newsletter by Family Voices contains information for existing and emerging family advocates of children and adolescents with special health care needs on topics such as leadership, mentoring, partnering, and team building.
  
  
• Friends' Health Connection (FHC). Provides two support networks: one that connects individuals with similar health care needs and the other that connects family members, friends, and caregivers of those with special health care needs.
  
  
• Linkages. This electronic newsletter from the Center for Children with Special Needs contains articles, resource lists, and news for professionals and families caring for children and adolescents with special health care needs.
  
  
• Links to Other Disability Resources: Magazines, Periodicals, and Other Media. This list by the Center on Human Policy (CHP) includes online magazines, newsletters, and radio programs for and about people with disabilities.
  
  
• Mothers United for Moral Support (MUMS) National Parent-to-Parent Network. Provides a networking system for parents or caregivers of children and adolescents with special health care needs that matches them with other parents whose children have the same or a similar condition. The network includes over 10,000 families from 54 countries covering over 3,500 disorders. Parents can exchange medical information and contact information for doctors, clinics, and medical resources or research programs and can provide each other with emotional support. MUMS also offers a newsletter for families to share and speak out about issues affecting their lives.
  
  
• NCD Bulletin. Published monthly by the National Council on Disability (NCD), this electronic newsletter reports on federal news, issues, and publications about people with disabilities. NCD also offers the NCD Listserv, an electronic discussion group addressing public policy that affects people with disabilities.
  

  
  
  

Resources on Specific Aspects of Care and Development
Adolescent Transition
Adoption
Advocacy
Child Care/Early Childhood Programs
Chronic Illnesses and Disabilities
Community Interactions: Community-Based Care and Service Coordination
Cultural Competence
Data About Children and Adolescents with Special Health Care Needs
Education/Early Intervention
Environment
Financing Services and Health Insurance
Foster Care
General Health and Safety Resources
Genetic Services
Hospice and Palliative Care
Hospitals and Patient Travel and Lodging
Medical Home
Mental Health
Nutrition
Oral Health
Parenting and Family Supports
Rehabilitation
Screening
Sports, Recreation, and the Arts
State Information

Adolescent Transition

Includes resources about health care, education, employment, and independent living for adolescents with special health care needs who are transitioning to adult services. Also see the Center for Children with Special Needs, Consortium for Children and Youth with Disabilities and Special Health Care Needs, DisabilityInfo.gov, the National Center for Cultural Competence (NCCC), the National Dissemination Center for Children with Disabilities (NICHCY), the National Institute on Disability and Rehabilitation Research (NIDRR), and the Parent Advocacy Coalition for Educational Rights Center (PACER).

• Americans with Disabilities Act (ADA) Technical Assistance Program. Offers Web-based tutorials, audio conferences, technical assistance, and other resources for employers and individuals with disabilities about the Americans with Disabilities Act (ADA). Also provides the ADA Document Portal, an online library with over 7,400 documents about the ADA and employment, state and local government, public accommodations, transportation, facility access, communications, interpretation, and enforcement. The program is funded by the National Institute on Disability and Rehabilitation Research (NIDRR).
  
  
• Health Care Transitions. Offers program information, online videotapes, training materials, an online discussion group, and other resources in English and Spanish for families and professionals about transitioning from pediatric to adult-oriented health care for adolescents with special health care needs. Health Care Transitions is a program of the Institute for Child Health Policy (ICHP).
  
  
• Healthy and Ready to Work National Center (HRTW). Contains annotated links to a wealth of resources for families, health professionals, and state and local agencies to help adolescents with special health care needs receive the services necessary to transition to all aspects of adulthood, including adult health care, employment, and independent living. Resources focus on understanding systems of care, accessing quality health care, and increasing the involvement of adolescents in their health care decisions. HRTW is funded by the Maternal and Child Health Bureau (MCHB).
  
  
• National Center on Secondary Education and Transition (NCSET). Offers a wealth of resources including issue briefs, parent guides, and resource compilations for school and transition professionals, health professionals, and families about secondary education and transition issues for adolescents with special health care needs. Also includes contact information for state transition-related and education offices, Web-based forums about transition, and a monthly electronic newsletter announcing national resources, events, and funding opportunities. NCSET is funded by the Department of Education (ED). Two of many recent publications include

  Transition planning: Community mapping as a tool for teachers and students. (2005).

  Universal design for learning and the transition to a more challenging academic curriculum: Making it in middle school and beyond. (2005).

• National Clearinghouse on Postsecondary Education for Students with Disabilities: HEATH Resource Center. Provides information and publications about educational support services, policies, procedures, adaptations, and opportunities at American college campuses, vocational-technical schools, and other postsecondary training entities. HEATH is part of George Washington University. Recent publications include

  Creating options: Financial aid for individuals with disabilities. (2007).

• National Collaborative on Workforce and Disability for Youth (NCWD/Youth). Offers publications, program information, and tools relating to work force development and adolescents with disabilities. NCWD/Youth is funded by the Office of Disability Employment Policy (ODEP) at the Department of Labor. Recent publications include

  Guideposts for success: A guide to help steer families, institutions, and youth themselves through the transition process. (2005).

  National standards and quality indicators: Transition toolkit for systems improvement. (2005). This toolkit presents the research upon which the guideposts (see above) were developed.

• Next Steps: The Guide to Future Planning. Contains a resource for students with disabilities and their families, educators, and other professionals that identifies the steps a student needs to take to plan for adult life. It includes information about transition planning, self-advocacy, job training and placement, assistance in getting housing, and programs on health care and independent living. Next Steps is a product of the Parent Educational Advocacy Training Center (PEATC).
  
  
• People with Disabilities. Contains links to accessible housing designs, accessibility guidelines, independent living centers, fair housing laws, and other topics about housing for those with special health care needs. Available in English and Spanish, this compilation is provided by the Department of Housing and Urban Development (HUD).
  
  
• Social Security Online: The Work Site. Contains employment resources for adolescents with disabilities and their families, employers, health and social services professionals, and advocates. The work site is provided by the Social Security Administration (SSA).
  
  
• Transition Coalition. Contains program information, online training modules, and publications for professionals and families about the transition from school to adult life for adolescents with special health care needs. The coalition is located at the University of Kansas.
  

  
  
  

Adoption

• Child Welfare Information Gateway: Adoption. Offers an electronic resource guide for prospective parents about adopting a child with special health care needs. Also offers program information, publications, and other resources on a wide range of adoption topics for professionals, prospective parents, adoptive parents, adopted people, pregnant women, and birth mothers, fathers, and relatives. The gateway is a service of the Department of Health and Human Services (DHHS).
  
  
• Also see the MCH Library's organizations resource list, Adoption and foster care.
  

Advocacy

Also see the Americans with Disabilities Act (ADA) Technical Assistance Program, DisabilityInfo.gov, Easter Seals, the Genetic Alliance, the National Dissemination Center for Children with Disabilities (NICHCY), the National Health Law Program (NHeLP), the Parent Advocacy Coalition for Educational Rights Center (PACER), Parents Helping Parents: Helping Children with Special Needs, and the Technical Assistance Alliance for Parent Centers (The Alliance).

• Center on Human Policy (CHP). Contains an extensive collection of bibliographies, fact sheets, position statements, and links to additional resources for and about people with disabilities on topics such as alternative day activities, community supports, disability studies, faith communities and spirituality, family supports, friendships and relationships, gender and disability, housing, education, health care, membership on decision-making bodies, multiculturalism and disability, recreation and leisure, self-advocacy, supported employment, and supported living. CHP is an advocacy and research organization that promotes the rights of people with disabilities to be fully included in community life.
  
  
• Family Voices. Contains resources supporting family involvement in Title V programs; updates on issues affecting the health care of children and adolescents with special health care needs such as SCHIP, managed care, Supplemental Security Income (SSI), and Medicaid; national data; contact information for state programs; and grassroots organizing tips. Family Voices is a national grassroots organization working on behalf of children and adolescents with special health care needs and their families. In addition to an electronic newsletter, resources and initiatives include

  Bright Futures for Families. Offers materials for families and communities to promote and improve the health and well-being of all children.

  Family to Family Health Information Centers (F2F HICs). Presents program information and materials about this initiative to develop F2F HICs in all states and territories for providing information to families about the medical home concept; health insurance availability; early screening and intervention; appropriate transition services for adolescents and young adults; and improving leadership and decision-making capacity for all families.

  Kids As Self-Advocates (KASA). Offers articles, fact sheets, personal narratives, an online forum, and other resources from this national grassroots network of adolescents with special health care needs and their friends speaking on their own behalf.

  Title V Toolbox for Family Participation. Includes a collection of state materials and program models to strengthen family involvement in state MCH and children with special health care needs programs.

• Federation for Children with Special Needs (FCSN). Offers information about agencies in Massachusetts and throughout the United States that provide information or services to families of children and adolescents with special health care needs. FCSN is a nonprofit organization that provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.
  
  
• National Council on Disability (NCD). Contains reports on the implementation and enforcement of the ADA and other civil rights laws, policy briefs, presentations, articles, and lists of links to federal and state agencies and resources for those with disabilities and their families. Also offers an electronic newsletter and an electronic discussion group about issues and news affecting people with disabilities. NCD is an independent federal agency making recommendations to the president and Congress on issues affecting all Americans with disabilities and their families.
  
  
• National Disability Rights Network (NDRN). Offers training information, legislative news, and other resources for people with disabilities, their families, and disability advocates for guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems. NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy Systems and Client Assistance Programs for individuals with disabilities.
  
  
• National Organization on Disability (NOD). Offers information and links to resources about employment, community involvement, politics, religion, education, transportation, health care, and technology for those with disabilities and their families. Other general resources include disability-related news, disability etiquette tips, and an emergency preparedness guide. NOD aims to increase the participation of people with disabilities in all aspects of life by advocating, educating, and offering recognition to organizations and communities that have made progress in integrating citizens with disabilities into the community.
  
  
• Parent Educational Advocacy Training Center (PEATC). Contains information about publications, training packages, and a videotape for parents and professionals on topics that include early intervention services, special education, transition from school to employment, and mediation. PEATC assists families of children and adolescents with special health care needs, schools, and other professionals through education, information, and training. Note: Also see PEATC's resource about adolescent transition, Next Steps: The Guide to Future Planning.
  

  
  
  

Child Care/Early Childhood Programs

Also see the Center for Children with Special Needs, Easter Seals, the National Dissemination Center for Children with Disabilities (NICHCY), the Parent Advocacy Coalition for Educational Rights Center (PACER), the Parent Educational Advocacy Training Center (PEATC), and Tots 'n Tech Research Institute (TnT). Please see the education/early intervention section for resources about early intervention.

• Child Care Aware. Offers child care information for families in English and Spanish on topics such as choosing high-quality care for a child with special health care needs, types of care, licensing, and accreditation. Child Care Aware is a program of the National Association of Child Care Resource and Referral Agencies (NACCRRA). To find care, use the following resources:

  Child Care Connector. Presents an online directory of local child care resource and referral (CCR&R) organizations that provide parents with referrals to local child care providers, including programs for children with special health care needs, information on state licensing requirements, availability of child care subsidies, and other pertinent information about child care.

• Child Care Plus+: Center on Inclusion in Early Childhood. Contains fact sheets, assessment tools, a newsletter, and other resources for families and child care providers for including children with special health care needs in early childhood programs. Child Care Plus+ is located at the University of Montana.
  
  
• Office of Head Start. Contains program information and resources for including children with special health care needs in Head Start and Early Head Start, which are comprehensive child development programs that serve children from birth to age 5, pregnant women, and their families. Includes an online directory of Head Start programs. The Head Start Bureau is part of the Department of Health and Human Services (DHHS). A recent publication about Head Start's services for children with special health care needs is

  Preparing for success: How Head Start helps children with disabilities and their families. (2005). This report was a collaborative effort between the Center for Law and Social Policy and Easter Seals.

• Partnerships for Inclusion (PFI). Contains product information for videotapes, a magazine, fact sheets, booklets, and training modules for professionals about including children with special health care needs in early childhood programs. PFI is part of the Frank Porter Graham Child Development Institute at the University of North Carolina-Chapel Hill.
  

Additional Publications

• American Academy of Pediatrics (AAP), American Public Health Association (APHA), and National Resource Center for Health and Safety in Child Care. 2002. Caring for our children: National health and safety performance standards -- Guidelines for out-of-home child care, 2nd ed. Washington, DC: American Public Health Association. This manual provides health and safety guidelines for planning and establishing a quality child care program. Panels of experts formulated these health and safety standards, which were then reviewed nationally for content and feasibility. The guidelines include a section about providing child care for children who are eligible for services under the Individuals with Disabilities Education Act (IDEA).
  
  
• Karoly LA, Kilburn MR, Cannon JS. 2005. Early childhood interventions: Proven results, future promise. Santa Monica, CA: Rand Corporation. This report examines the costs and benefits of early childhood programs.
  

  
  
  

Chronic Illnesses and Disabilities

• To identify resources about specific conditions, see Health Hotlines, Centers for Disease Control and Prevention's (CDC's) A to Z index, the Center for Children with Special Needs, the MCH Organizations Database, the National Dissemination Center for Children with Disabilities (NICHCY), the National Organization for Rare Disorders (NORD), LD Online, MedlinePlus, the Genetic Alliance, the Genetic Disorders & Birth Defects Information Center, and the Office of Rare Diseases (ORD).
  
  
• Also see the Maternal and Child Health Library's knowledge paths on the following specific conditions:
  Asthma in children and adolescents
  Autism spectrum disorders
  Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
  Diabetes in children and adolescents

  
  
  

Community Interactions: Community-Based Care and Service Coordination

Also see the Agency for Healthcare Research and Quality (AHRQ), Family Voices, Health CareTransitions, the Healthy and Ready to Work National Center (HRTW), the National Center of Medical Home Initiatives for Children with Special Needs, and the cultural competence section.

• Georgetown University Center for Child and Human Development (GUCCHD). Offers program, conference, and training information; publications; and other resources to improve quality of life for all children and adolescents, especially those with, or at risk for, special health care needs and their families. GUCCHD is a division of Georgetown University's Department of Pediatrics. Resources and initiatives include

  Communities Can! Describes the activities of model communities to successfully serve all their communities' children, including those with disabilities, and their families. Recent publications include

  • Enhancing collaboration between primary and subspeciality care providers for children and youth with special health care needs. (2005).
    
    
  • Strengthening the community system of care for children and youth with special health care needs and their families: Collaboration between health care and community service systems. A workbook. (2004).

  Consortium for Children and Youth with Disabilities and Special Health Care Needs. Contains research and training information and products to improve rehabilitation outcomes for children and youth with disabilities and special health care needs by increasing the effectiveness of service systems. Topics include access to pediatric rehabilitation, promising practices in adolescent transition, use of telehealth in remote settings, and training issues in assistive technology. The Consortium, a national rehabilitation research and training center, is a partnership among GUCCHD, the Heller School at Brandeis University, the Institute for Child Health Policy, and Family Voices. One of many recent publications is

  • Proceedings: Building the capacity of service delivery systems for children and youth with disabilities and special health care needs. State of the science conference. (2004).

  National Technical Assistance Center for Children's Mental Health. Offers program and conference information and other resources about reforming services and building systems of care for children and adolescents who have, or are at risk for, mental health problems and their families.

  Also see GUCCHD's National Center for Cultural Competence (NCCC).

• Institute for Child Health Policy (ICHP). Contains program information, publications, and links to additional resources for professionals, policymakers, and families about access, utilization, cost, quality, and family involvement in health policies, programs, and systems, particularly those at the state level involving children and adolescents with special health care needs. ICHP is a statewide institution of Florida's state university system, and it receives funding from the Maternal and Child Health Bureau (MCHB). See also ICHP's Health Care Transitions program and the National Center on Financing for Children with Special Health Care Needs.
  
  
• Maternal and Child Health Bureau (MCHB). Outlines a national agenda for state Title V programs for children and adolescents with special health care needs. Endorsed by more than 70 professional and voluntary organizations, the agenda calls for the development of systems of care for children and adolescents with special health care needs that are family centered, community based, coordinated, and culturally competent. Several MCHB-funded projects focusing on children and adolescents with special health care needs are described in this knowledge path, and previously funded projects are described in the MCH Projects Database. MCHB provides resources and support to advance the health of mothers, infants, children, and adolescents, including those with special health care needs. MCHB is part of the Health Resources and Services Administration (HRSA). Publications include

  Health and well-being of children: A portrait of states and the nation 2005. (2005). This chartbook highlights broad health characteristics for children and adolescents and points to a need to improve access to health care for children and adolescents from low-income families, children and adolescents with no health insurance, and children and adolescents with special health care needs. The chartbook is based on data from the National Survey of Children's Health and focuses on measures of children's physical and mental health, health care, and general well-being as these measures relate to the children's families, schools, and neighborhoods.

• New England SERVE: Promoting Quality Systems of Care for Children with Special Health Care Needs and Their Families. Includes materials for improving the quality of care for children with special health care needs, building effective parent-professional collaboration, and financing health care for children with special health care needs. New England SERVE is a health policy research and planning organization working to promote family-centered systems of care for children with special health care needs.
  

Additional Publications

• Association of Maternal and Child Health Programs (AMCHP). 2005. Children with special health care needs. Washington, DC: Association of Maternal and Child Health Programs. This fact sheet describes AMCHP's role in assisting families and state programs with creating and sustaining systems of care for children and adolescents with special health care needs and their families.
  
  
• Fine A, Mayer R. 2006. Beyond referral: Pediatric care linkages to improve developmental health. New York, NY: Commonwealth Fund. This report reviews the current state of pediatric linkages for developmental care, emphasizing the important role of pediatric health professionals in providing developmental care and linking children to needed services and resources within the broader community. Topics include the context in which pediatric developmental care and linkage takes place, working definitions and a typology for describing linkage strategies, key linkage strategies used by exemplary practices and programs, and recommendations and next steps for improved linkages.
  
  
• Grantmakers in Health. 2004. Connecting children to ongoing and coordinated health care. Washington, DC: Grantmakers in Health. This fact sheet provides information about the importance of ongoing health care for children, including children with special health care needs, and outlines funding opportunities for grantmakers in the following areas: (1) improving access to medical homes, (2) coordinating care for children with chronic diseases, (3) educating health professionals, (4) colocating services, and (5) reducing emergency department use.
  

  
  
  

Cultural Competence

Also see the Maternal and Child Health Bureau (MCHB).

• National Center for Cultural Competence (NCCC). Contains information in English and Spanish about providing culturally competent services to children and adolescents with special health care needs and their families. Resources include assessment tools for health professionals, policy briefs, a guide for adolescent transition services, and links to additional information. NCCC aims to increase the capacity of health programs to design, implement, and evaluate culturally competent service delivery systems for children and adolescents with special health care needs and their families. NCCC is part of the Georgetown University Center for Child and Human Development (GUCCHD).
  

Additional Publication

• Lynch EW, Hanson MJ, eds. 2004. Developing cross-cultural competence: A guide for working with children and their families, 3rd ed. Baltimore, MD: Paul H. Brookes Publishing Company. Description and ordering information.
  

  
  
  

Data About Children and Adolescents with Special Health Care Needs

Also see the Agency for Healthcare Research and Quality (AHRQ), the Center for Children with Special Needs, Family Voices, the Healthy and Ready to Work National Center (HRTW), the March of Dimes (MOD), the Maternal and Child Health Bureau, and the National Center for Birth Defects and Developmental Disabilities (NCBDDD).

• Child Trends DataBank. Reports on national trends and research on over 80 key indicators of child and adolescent well-being and offers information about the types of programs and interventions that may influence particular outcomes. Child Trends is a nonprofit, nonpartisan research organization providing research and data to inform decision-making that affects children and adolescents. Recent analyses about children and adolescents with special health care needs include

  Children with limitations. (2004).

• Data2010: The Healthy People 2010 Database. Contains the most recent monitoring data for tracking Healthy People 2010. To obtain data about children and adolescents with special health care needs, click on the field, Data by Focus Area. Under the field, Select a Focus Area, choose 06-Disability and Secondary Conditions from the pop-up menu. Next, click on the button, Include Related Objectives from Other Focus Areas in the Table. Click on the Submit button, or use the other fields to narrow your search. This data set is provided by the National Center for Health Statistics (NCHS) via CDC Wonder.
  
  
• Data Resource Center for Child and Adolescent Health (DRC). Provides access to and use of data from the National Survey of Children with Special Health Care Needs and the National Survey of Children's Health, 2003. Users can search and compare results on over 100 indicators of child health and well-being; view state and regional profiles on key measures; explore survey content relevant to Healthy People 2010 objectives; and compare findings at all levels for children by age, race and ethnicity, income, or health status. DRC is a project of the Child and Adolescent Health Measurement Initiative (CAHMI).
  
  
• National Center for Health Statistics (NCHS). Compiles statistical information on health status and health care for the U.S. population and important subgroups, including children and adolescents with special health care needs. NCHS is part of the Centers for Disease Control and Prevention (CDC). Resources include

  National Survey of Children with Special Health Care Needs. This survey, sponsored by the Maternal and Child Health Bureau (MCHB), represents the first source of both national- and state-level data on the size and characteristics of the population of children and adolescents with special health care needs. The survey assesses the prevalence and impact of special health care needs among children and adolescents nationally and explores the extent to which these children and adolescents have medical homes, adequate health insurance, and access to needed services. Other topics include care coordination and satisfaction with care. The survey instrument, methodology report, and related publications are provided. Publications using the survey data include

  • Blumberg SJ, Osborn L, Luke JV, Olson L, and Frankel MR. 2004. Estimating the prevalence of uninsured children: An evaluation of data from the National Survey of Children with Special Health Care Needs, 2001. Vital and health statistics: Series 2, Data evaluation and methods research; no. 136.
    
    
  • Huang ZJ, Kogan MD, Yu SM, Strickland B. 2005. Delayed or forgone care among children with special health care needs: An analysis of the 2001 National Survey of Children with Special Health Care Needs. Ambulatory Pediatrics 5(1):60-67. See the MCH Alert article summary.
    
    
  • Kogan MD, Newacheck PW, Honberg L, Strickland B. 2005. Association between underinsurance and access to care among children with special health care needs in the United States. Pediatrics 116(5):1162-1169. See the MCH Alert article summary.
    
    
  • Kogan MD, van Dyck PC, eds. 2005. The National Survey of Children with Special Health Care Needs: Using state-level data to improve systems of care for children. Maternal and Child Health Journal 9(Suppl. 2):S1-S130. See the MCH Alert summary of this journal supplement.
    
    
  • Maternal and Child Health Bureau (MCHB). 2004. National Survey of Children with Special Health Care Needs: Chartbook 2001. Rockville, MD: Maternal and Child Health Bureau. This chartbook includes information on prevalence, health and functional status, insurance coverage, health care needs and access to care, care coordination, family-centered care, and impact on families of children and adolescents with special health care needs.
    
    
  • van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. 2004. Prevalence and characteristics of children with special health care needs. Archives of Pediatrics and Adolescent Medicine 158(9):884-890. See the MCH Alert article summary.
    
    
  • Yu SM, Nyman RM, Kogan MD, Huang ZJ, Schwalberg RH. 2004. Parent's language of interview and access to care for children with special health care needs. Ambulatory Pediatrics 4(2):181-187. See the MCH Alert article summary.
    
    
• Title V Information System (TVIS). Contains data from annual Title V Block Grant applications and reports submitted by all 59 U.S. states and jurisdictions. Search and sort data about programs and services for children and adolescents with special health care needs and Title V budgets and expenditures allocated to these programs. TVIS is a service of the Maternal and Child Health Bureau (MCHB).
  

Additional Electronic Publications

• Association of State and Territorial Health Officials (ASTHO). 2004. State activities in birth defects surveillance. Washington, DC: Association of State and Territorial Health Officials. This issue brief highlights ways that state public health agencies can overcome various challenges facing their birth defects surveillance programs to sustain and further improve their birth defects surveillance activities.
  
  
• Canfield MA, Ramadhani TA, Yuskiv N, Davidoff MJ, Petrini JR, Hobbs CA, Kirby RS, Romitti PA, Collins JS, Devine O, Honein MA, Mai CT, Edmonds LD, Correa A. 2006. Improved national prevalence estimates for 18 selected major birth defects: United States, 1999-2001. Morbidity and Mortality Weekly Report 54(51 & 52):1301-1305. This report describes estimates of national prevalence and number of affected births for 18 selected major birth defects using population-based active birth defects surveillance data.
  
  
• Child and Adolescent Health Measurement Initiative (CAHMI). 2002. Children with special health care needs (CSHCN) module. Portland, OR: Foundation for Accountability (FACCT). This set of survey-based methods and tools are designed to identify children with special health care needs and measure basic aspects of health care quality for this population.
  
  
• Sever LE, ed. 2004. Guidelines for conducting birth defects surveillance. Atlanta, GA: National Birth Defects Prevention Network. These technical guidelines are designed to serve as a first step in the documentation of the process of developing and promoting the use of standards and guidelines for state birth defects surveillance programs in the United States. The technical guidelines provide a way of improving the quality of birth defects surveillance data to make the data more useful for research, to encourage the use of such data to link children with birth defects to needed services, and to evaluate such services.
  
  
• Trust for America's Health. 2005. Birth defects and developmental disabilities: The search for causes and cures. Washington, DC: Trust for America's Health. This report finds that improvements in tracking information about birth defects and developmental disabilities could greatly enhance research efforts toward identifying causes, improving treatment, and discovering cures.
  

  
  
  

Education/Early Intervention

This section contains resources about education and early intervention, including promotion of successful school entry and primary, secondary, and postsecondary education. Most of the resources described below are administered or funded by the Department of Education (ED) and touch upon many education-related issues. Also see the National Center on Secondary Education and Transition (NCSET), the National Clearinghouse on Postsecondary Education for Students with Disabilities, the National Dissemination Center for Children with Disabilities (NICHCY), the Parent Educational Advocacy Training Center (PEATC), Parents Helping Parents: Helping Children with Special Needs, the Tots 'n Tech Research Institute (TnT), and the section about child care/early childhood programs.

• Department of Education (ED). Offers many resources in English and Spanish about education and children and adolescents with special health care needs for students, families, and education professionals. Supports the ERIC and EROD databases, two excellent sources for information about education-related publications and organizations, respectively. Also offers

  Disability Discrimination. Provides an overview of the laws involving disability discrimination in education and links to resources on the topic.

  Office of Special Education and Rehabilitation Services (OSERS). Provides program information and links to its three components that support individuals with disabilities:

  • National Institute on Disability and Rehabilitation Research (NIDRR). See the Rehabilitation section.
    
    
  • Rehabilitation Services Administration (RSA). See the Adolescent Transition section.
    
    
  • Office of Special Education Programs (OSEP). Contains a wealth of information about its programs, grants, research, monitoring efforts, national studies, and other resources for ensuring that infants, children, and adolescents with disabilities receive quality special education and related services through the Individuals with Disabilities Education Act (IDEA).
    
    
• LD Online. Contains articles, fact sheets, discussion groups, and "ask the expert" opportunities about a wide range of learning disability-related issues for parents, teachers, and other professionals. LD OnLine is a service of the Learning Project at WETA in Washington, DC.
  
  
• National Early Childhood Technical Assistance Center (NECTAC). Provides a wealth of resources for implementing the early childhood provisions of IDEA. Topics include quality assurance, family involvement, financing systems, inclusion and natural environments, early identification, coordinated services, and early childhood practices. Offers information about the early childhood education projects funded by the Office of Special Education Programs (OSEP) and contact information for state agency staff responsible for implementing the early childhood provisions of IDEA. NECTAC is part of the Frank Porter Graham Child Development Institute at the University of North Carolina-Chapel Hill.
  
  
• Parent Advocacy Coalition for Educational Rights Center (PACER). Offers a wealth of publications, training information, and other resources for families and professionals on a wide range of topics including special education laws and procedures, parent advocacy, early childhood education, transition, supported employment, vocational rehabilitation, and disability awareness. PACER strives to expand opportunities and enhance quality of life for children and adolescents with disabilities and their families, based on the concept of parents helping parents. PACER administers the national office of the

  Technical Assistance Alliance for Parent Centers (The Alliance). Provides contact information and other resources for developing, assisting, and coordinating Parent Training and Information Projects (PTIs) and Community Parent Resource Centers (CPRCs) under IDEA. PTIs and CPRCs in each state offer training and information to parents of infants, children, and adolescents with disabilities to enable parents to participate more effectively with professionals in meeting the educational needs of their children.

Additional Publications

• Family Infant Toddler Program, New Mexico Department of Health. 2005. Family handbook: A guide to early intervention in New Mexico. Santa Fe, NM: New Mexico Department of Health. This document for parents of children with special health care needs in New Mexico is a guide to the Family Infant Toddler (FIT) Program and a tool to use in putting together an early intervention plan. Section topics include a description of the FIT program, what to expect from the evaluation and eligibility process, the individualized family service plan, developing a transition plan for services and support after early intervention, family rights, definitions and acronyms of early intervention, and family resources. A Spanish version of the handbook is also available.
  
  
• Georgia Division of Public Health. 2004. Transition at age 3: Steps for success. A guide for Georgia children with disabilities, their families, Babies Can't Wait early intervention services, schools, and community programs. Atlanta, GA: Georgia Department of Human Resources. This guide provides guiding principles, recommended practices, and tools to promote smooth and effective transitions from Georgia's Early Intervention/Babies Can't Wait program (which serves infants and children from birth through age 3) into preschool services and other options for children ages 3-5.
  

Databases

• Education Resources Information Center (ERIC) Database. Covers all aspects of education-related issues through journal articles, conference proceedings, papers, speeches, research reports, teaching guides, curricula, and books. Search the database to identify many items about education and children and adolescents with special health care needs. Use the major descriptor disabilities for a general search. Use the ERIC Thesaurus to select additional terms to narrow your search. ERIC is the information database of the Department of Education (ED).
  
  
• Education Resource Organizations Directory (EROD). Contains contact information and descriptions for approximately 3,000 organizations that provide information and assistance on a broad range of education-related topics. EROD includes contact information for state offices that administer education- and health-related programs for children and adolescents with special health care needs. For a general list of organizations focusing on this population, search on the broad terms special education OR disabilities. Browse EROD's list of subject terms to identify descriptors for more focused searching. EROD is a product of the Department of Education (ED).
  

  
  
  

Environment

Also see Easter Seals and People with Disabilities.

• Adaptive Environments Center (AE). Contains resources about universal design, including checklists and evaluation guides for accessibility. AE promotes, facilitates, and advocates for the design of environments in all settings that will allow every individual to participate in community life.
  
  
• Center for Universal Design. Contains program information and resources about accessible and universal design in housing, buildings, and products. Resources include design manuals and plans for universal design, product fact sheets, consumer product guides, and journal articles. Also contains an extensive list of links to Web sites on topics related to universal design and accessibility. The Center for Universal Design is a national research, information, and technical assistance center that evaluates, develops, and promotes universal design in housing, public and commercial facilities, and related products.
  

  
  
  

Financing Services and Health Insurance

Also see the Agency for Healthcare Research and Quality (AHRQ), Easter Seals, Exceptional Parent (EP), Family Voices, the National Association of Children's Hospitals and Related Institutions (NACHRI), and New England SERVE. For links to resources about health insurance and access to care for all children and adolescents, see the Maternal and Child Health Library's Knowledge path: Child and adolescent health insurance and access to care.

• Center for Health Care Strategies (CHCS). Contains resources and information about initiatives and funded projects to help states, health plans, and consumer organizations effectively use managed care to improve the quality of services for children and adolescents with special health care needs. CHCS provides training and technical assistance to improve the quality of publicly financed health care in the United States. Recent resources include

  Improving managed care for children with special needs: A best clinical and administrative practices toolkit. (2004).

  Enhancing child development services in Medicaid managed care: A best clinical and administrative practices toolkit. (2005).

• Centers for Medicare and Medicaid Services (CMS). Contains program information, publications, forms, data, and information about research and demonstration projects for professionals and consumers. CMS provides health insurance for millions of Americans through Medicare, a health insurance program for individuals ages 65 and over and for certain individuals with disabilities; Medicaid, a program that funds state medical services to low-income individuals and families; and SCHIP. CMS also oversees federal medical care quality-control efforts related to these programs and implements the Health Insurance Portability and Accountability Act, part of which protects health insurance coverage for workers and their families when the workers change or lose their jobs.
  
  
• Insure Kids Now. Provides information in English and Spanish about each state's child and adolescent health insurance program Web site. Insure Kids Now is a national initiative of the Health Resources and Services Administration (HRSA) to link all uninsured children and adolescents to free or low-cost health insurance. Telephone: (877) KIDS-NOW (543-7669).
  
  
• Kaiser Family Foundation: Medicaid/SCHIP for People with Disabilities. Presents a wealth of resources about health care coverage via Medicaid and SCHIP for children, adolescents, and adults with disabilities. The Kaiser Family Foundation is an independent philanthropy focusing on national health care issues. Recent publications include

  Navigating Medicare and Medicaid, 2005: A resource guide for people with disabilities, their families, and their advocates. (2005).

  SCHIP-enrolled children with special health care needs: An assessment of coordination efforts between state SCHIP and Title V programs. (2004).

• Medicaid Reference Desk. Explains Medicaid in basic terms for people with cognitive disabilities, family members, and advocates. Provides information about what is available through each state Medicaid plan and waivers and where to apply for services. The Medicaid Reference Desk is funded by the Centers for Medicare and Medicaid Services (CMS).
  
  
• National Center on Financing for Children with Special Health Care Needs. Includes program information, publications, and educational materials about financing and reimbursement strategies for children and adolescents with special health care needs. The center is part of the Institute for Child Health Policy (ICHP).
  
  
• National Health Law Program (NHeLP). Offers publications and links to other high-quality resources about Medicaid, managed care, the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program, the rights of AIDS patients, insuring the uninsured, maternal and infant care access, and state and local government responsibility for care. NHeLP is a national public-interest law firm that aims to improve health care for children and adolescents with special health care needs, among other populations. Resources include

  HealthCareCoach.com. Contains facts and do-it-yourself tips for consumers on health care topics ranging from health insurance to improving patient care. Includes a guide to resources for families of children and adolescents with special health care needs.

• Social Security Administration (SSA): Benefits for People with Disabilities. Offers application and program information about Social Security disability benefits. SSA administers the federal government's social security programs, including retirement benefits, disability benefits, and survivors' benefits. A recent publication is

  Benefits for children with disabilities. (2005). This booklet reviews the kinds of Social Security and Supplementary Security Income (SSI) benefits a child or adolescent with a disability may be eligible for and explains how SSA evaluates disability claims for children and adolescents.

Additional Electronic Publications

• Fox HB, Limb SJ. 2005. States' use of Medicaid options for expanding children's eligibility. Washington, DC: Maternal and Child Health Policy Research Center. This issue brief describes the major options provided to states for expanding children's eligibility for Medicaid and presents information on states' use of these options. It is divided into two sections: (1) Medicaid eligibility options available for covering children generally and (2) options available for covering certain children with disabilities or other special health care needs.
  
  
• Fox HB, McManus MA. 2005. A 50-state analysis of Medicaid benefit coverage for children without EPSDT. Memorandum to the March of Dimes and National Association of Children's Hospitals. Washington, DC: Maternal and Child Health Policy Research Center. This memorandum provides an analysis of the Medicaid coverage that would be available to children in each state if the EPSDT benefit requirement were eliminated and states applied the coverage policies in effect for categorically needy adults. The memorandum examines 12 benefits of particular importance to children with chronic physical and developmental conditions.
  
  
• Knipper S. 2004. EPSDT: Supporting children with disabilities. Tualatin, OR: National Center for Family Support. This booklet is designed to help parents who have a child with special health care needs better understand the EPSDT program and Medicaid. The booklet explains what EPSDT is, service delivery, limits on services, eligibility, Medicaid and immigration, the EPSDT process, grievances and appeals, and typical areas of confusion.
  
  
• Nyman RM, Ireys HT. 2004. Children with special health care needs: Building a quality-of-care initiative. Trends in health care quality. Washington, DC: Mathematica Policy Research (MPR). This issue brief summarizes recent studies investigating utilization and cost patterns for a large sample of children with special health care needs enrolled in two commercial managed care plans.
  
  
• Nyman RM, Ireys HT, Wickstrom S, Rheault P. 2004. Family cost-sharing for children with special health care needs in employer-based managed care plans 1991-2001. Washington, DC: Mathematica Policy Research (MPR). This report focuses on a study conducted using claims and administrative data from 1999 to 2001 to describe patterns of use and cost of health services to establish baseline data on the level of costs incurred by the families of children with special health care needs in commercial managed care programs.
  
  
• Peters CP. 2005. Children with special health care needs: Minding the gaps. Washington, DC: National Health Policy Forum. This paper examines medical expenditures, utilization, and insurance coverage of children and adolescents with special health care needs.
  
  
• Tu HT, Cunningham PJ. 2005. Public coverage provides vital safety net for children with special health care needs. Washington, DC: Center for Studying Health Systems Change. This issue brief provides data on insurance coverage for children with and without special health care needs as a whole and by income. The brief also provides data on access to care for children with and without special health care needs by insurance status and for children with and without medical bill problems.
  

  
  
  

Foster Care

• See the electronic resource guide by the National Center of Medical Home Initiatives for Children with Special Needs.
  

  
  
  

General Health and Safety Resources

Search these Web sites to identify resources about a wide range of health and safety topics that are applicable to all children, not just those with special health care needs. Also see the American Academy of Pediatrics (AAP), the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the health hotlines section.

• Bright Futures at Georgetown University. Contains guidelines, distance education resources, and training tools for a practical developmental approach to providing health supervision for infants, children, and adolescents, including those with special health care needs. Topics include general health and development, mental health, nutrition, oral health, and physical activity. Some materials are available in Spanish. Bright Futures is funded by the Maternal and Child Health Bureau (MCHB).
  
  
• healthfinder®. Offers a gateway to consumer health and human services information that includes links to online publications, clearinghouses, databases, related Web sites, and support groups, as well as government agencies and not-for-profit organizations that produce consumer health information. Topics cover a wide range of diseases and conditions. healthfinder® is coordinated by the Office of Disease Prevention and Health Promotion (ODPHP).
  
  
• KidsHealth. Contains a wealth of doctor-approved information for parents, children, and adolescents about child and adolescent health on topics that include behavior, growth, nutrition, physical activity, infections, first aid, safety, laboratory tests, and medical and surgical conditions and treatments. The site contains articles about specific disabilities and chronic illnesses as well as information pertinent to all families. KidsHealth is a service of the Nemours Foundation's Center for Children's Health Media.
  
  
• MedlinePlus. Contains a selective list of authoritative health information sources for consumers and health professionals on a wide range of health topics that include chronic illnesses and disabilities. Offers links to publications, Web sites, dictionaries for medical terms, physician directories, and consumer health libraries around the country. Each list also contains a link to an automatic PubMed search on the topic. MedlinePlus is available in English and Spanish. It is provided by the National Library of Medicine (NLM).
  
  
• Also see the Maternal and Child Health Library's Social and Emotional Development in Children and Adolescents.
  

  
  
  

Genetic Services

Also see the March of Dimes (MOD), the National Organization for Rare Disorders (NORD), and the screening section which includes several additional newborn screening resources.

• Genetic Alliance. Contains a database of genetic resources, information about diseases and conditions, glossaries of genetic and medical terms, family history tools, Spanish-language resources, advocacy tools, and information about public policy issues such as genetic discrimination, open access to federally funded genetic research, and a national newborn screening policy. The Genetic Alliance is a coalition of genetic advocacy organizations, health professionals, clinics, hospitals, and companies that promotes the needs of individuals affected by genetic disorders and their families. Resources include

  Does it run in the family? A guide to family health history. (2005). This non-medically based family history tool is currently being tested.

• Genetic Disorders & Birth Defects Information Center. Offers an annotated, online guide to Web sites, publications, and other resources about genetic disorders, birth defects, genetic testing, and counseling, Also links to resources that cover the basics of genetics, including ethics, gene therapy, and career possibilities. The center is a service of the Indiana University School of Medicine Library.
  
  
• Genetics Home Reference. Contains information for consumers about genetic conditions and the genes responsible for those conditions. Also provides a basic explanation of how genes work and how mutations cause genetic disorders. Information about genetic counseling, genetic testing, gene therapy, newborn screening, and the Human Genome Project is also provided. This Web site is a service of the National Library of Medicine (NLM). Resources include

  Help me understand genetics. (2005). [Handbook].

• National Newborn Screening and Genetics Resource Center (NNSGRC). Provides information about newborn screening and genetics to health professionals, families, and policymakers. Includes resources to assist states in improving their newborn screening activities and enhancing their capacity to incorporate new developments in genetics, health promotion, and disease prevention into the public health system. Resources include contact information for the regional and state networks for genetic services and the support groups and professional and consumer organizations involved with newborn screening, genetic disorders, and birth defects. Information about policy statements, laws, newsletters, and other publications is also included. NNSGRC is located at the University of Texas Health Science Center at San Antonio and is funded by the Maternal and Child Health Bureau (MCHB). Publications include

  A compendium of resources on genetic testing of children and adolescents. (2004).

• Office of Rare Diseases (ORD). Includes information about more than 6,000 rare diseases, research and clinical trials, patient support groups, and other resources. ORD is part of the National Institutes of Health (NIH). ORD's services include

  Genetic and Rare Diseases Information Center (GARD). Responds to questions about genetic and rare diseases from patients and their families, health professionals, biomedical researchers, and the general public.

• OMIM™ Online Mendelian Inheritance in Man™. Comprises an online catalog of textual information and references about human genes and genetic disorders. Also offers links to the National Center for Biotechnology Information (NCBI) Entrez database of MEDLINE articles and sequence information. OMIM™ was authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins University and elsewhere and was developed for the Internet by NCBI.
  

Additional Electronic Publication

• Office of the Surgeon General. 2004. My family health portrait. Washington, DC: Department of Health and Human Services (DHHS). This tool is part of the Surgeon General's national initiative to improve health by encouraging people to track their family health history. Available in English and Spanish, it provides a chart of a family tree that individuals can fill in with family members' relevant health information.
  

  
  
  

Hospice and Palliative Care

• Center to Advance Palliative Care (CAPC). Provides health professionals with tools and training for developing hospital palliative care programs. CAPC is a national initiative supported by the Robert Wood Johnson Foundation, with direction and technical assistance provided by the Mount Sinai School of Medicine, New York.
  
  
• Initiative for Pediatric Palliative Care (IPPC). Presents a curriculum, videotapes, and quality-improvement tools for health professionals aimed at enhancing family-centered care for children and adolescents living with life-threatening conditions. IPPC is an initiative of the Center for Applied Ethics and Professional Practice (CAEPP) at Education Development Center, Inc.
  
  
• National Hospice and Palliative Care Organization (NHPCO). Offers a national hospice directory, general information about hospice care, and a guide to selecting a hospice program. Includes Spanish-language resources. NHPCO is a national membership organization that works toward improving end-of-life care and expanding access to hospice care with the goal of enhancing quality of life for individuals dying in the United States and their loved ones.
  

  
  
  

Hospitals and Patient Travel and Lodging

• National Association of Children's Hospitals and Related Institutions (NACHRI). Offers hospital profiles accessible by geographic region, pediatric specialty, care delivery program, and other services. Also contains materials about financing, quality of care and accountability, research, and advocacy. NACHRI is a national 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 of Hospital Hospitality Houses (NAHHH). Contains a directory of lodgings with a homelike environment for families of hospital patients and hospital outpatients. NAHHH is a national organization serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies.
  
  
• PatientTravel.org. Provides information about charitable, long-distance medical air transportation to research and treatment sites for patients and referrals to all appropriate sources of help available in the national charitable medical air transportation network. PatientTravel.org is a service of the National Patient Travel Center.
  
  
• Shriners Hospitals for Children. Contains a hospital directory and eligibility and admission guidelines for this network of hospitals that provide no-cost orthopedic and burn care to children and adolescents. Patient education information is also included. There are 18 orthopedic Shriners Hospitals, 3 Shriners Hospitals dedicated to treating children with severe burns, and 1 Shriners Hospital that provides orthopedic, burn, and spinal cord injury care. Research on causation and treatment methods is conducted at all 22 of the Shriners Hospitals.
  

  
  
  

Medical Home

Also see Family Voices.

• National Center of Medical Home Initiatives for Children with Special Needs. Contains a wealth of resources for health professionals and families about providing medical homes for children and adolescents with special health care needs. Policy statements, journal articles, reports, training materials, screening tools, and state resource fact sheets are provided on topics that include access to care, family-centered care, foster care, screening, and transitions. The center is part of the American Academy of Pediatrics (AAP), and it is funded by the Maternal and Child Health Bureau (MCHB). Publications include

  Foster care and the medical home. (2005). This electronic resource guide explains the importance of establishing consistency in health care and access to a medical home for children and adolescents in foster care, many of whom have special health care needs. This annotated guide also links to tools, program information, presentations, and resources for further information.

  Proper use of coordination of care codes with children with special health care needs (CSHCN). (2004). This toolkit provides information on billing for the coordination of care with descriptions of individual codes and proper documentation, as well as an easy-to-follow billing slip.

Additional Electronic Publications

• Association of State and Territorial Health Officials (ASTHO). 2005. State policy options to establish medical homes for children and youth. Washington, DC: Association of State and Territorial Health Officials. This report highlights actions states have taken to establish medical homes for children and adolescents and provides additional policy options for states to consider.
  
  
• Inkelas M, Regalado M, Halfon N. 2005. Strategies for integrating developmental services and promoting medical homes. Los Angeles, CA: National Center for Infant and Early Childhood Health Policy. This report addresses how the medical home concept contributes to the child health policy and practice improvement agenda of the Maternal and Child Health Bureau's State Early Childhood Comprehensive Systems (SECCS) Initiative.
  
  
• Onufer CN, Pont EA, Brazdziunas DM, Desch LW, Cooley WC, Gardner HG, Sassetti M, Sia CJ, Keenan VD, Cook RJ, Roat SG, Pitts AM, Wilkin TM, Scherer D, eds. 2004. A medical home primer for community pediatricians and family physicians. Chicago, IL: University of Illinois Division of Specialized Care for Children. This monograph aims to provide a basic primer on the medical home concept to pediatric and family physicians who care for children and adolescents with special health care needs and their families.
  

  
  
  

Mental Health

• See the Maternal and Child Health Library's Knowledge path: Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents.
  

  
  
  

Nutrition

Also see Bright Futures at Georgetown University. For information about nutrition for all children and adolescents, see the Maternal and Child Health Library's Knowledge path: Child and adolescent nutrition.

• American Dietetic Association (ADA). Contains food and nutrition resources for health professionals and families on topics that include nutrition services for children and adolescents with special health care needs. Recent resources include

  Children with special health care needs: Nutrition care handbook. (2005). Description and ordering information.

  Position of the American Dietetic Association: Providing nutrition services for infants, children, and adults with developmental disabilities and special health care needs. (2004).

Additional Publications

• Ekvall SW, Ekvall VK, eds. 2005. Pediatric nutrition in chronic diseases and developmental disorders: Prevention, assessment, and treatment, 2nd ed. New York, NY: Oxford University Press. Description and ordering information.
  
  
• Lucas B, Feucht S, Nardella M, eds. 2004. Medicaid reimbursement for medical nutrition products and nutrition services for children with special health care needs: A Washington state case studies report. Olympia, WA: Washington State Department of Health. This report documents the costs and health and nutrition outcomes of providing medical nutrition products and nutrition services by a certified dietitian to children with special health care needs.
  
  
• Pipes P, Lucas B. 2005. Guidelines for the development and training of community-based feeding teams in Washington State, rev. ed. Olympia, WA: Washington State Department of Health. This manual provides guidelines for coordinating activities among community-based nutrition services in Washington State that care for children with special health care needs. Since many different services are involved in this process, these guidelines use a team approach to resolve conflicts that result from other service models.
  
  
• University of Washington Center on Human Development and Disability. 2005. Nutrition and oral health for children. Seattle, WA: University of Washington. This curriculum is designed for health professionals who wish to learn more about nutrition and oral health for children, including children with special health care needs. The curriculum contains five modules: (1) typical oral health development in children, (2) nutrition-related risk factors for dental caries, (3) influence of special health care needs on oral health, (4) prevention of nutrition-related oral health problems, and (5) screening for nutrition-related oral health problems.
  
  
• University of Washington Center on Human Development and Disability. 2005. Nutrition for children with special health care needs. Seattle, WA: University of Washington. This curriculum is designed for registered dietitians and other health professionals who wish to learn more about working with children with special health care needs. The curriculum contains six modules: (1) growth and assessment, (2) dietary intake and determining individual needs, (3) feeding skills, (4) fluid and bowel problems, (5) integrating community services and programs, and (6) putting it all together - developing a family-centered plan.
  

  
  
  

Oral Health

Also see Bright Futures at Georgetown University. For information about oral health for all children and adolescents, see the Maternal and Child Health Library's Knowledge path: Oral Health and Pregnant Women, Infants, Children, and Adolescents.

• National Foundation of Dentistry for the Handicapped (NFDH). Includes information about its programs to provide oral health services to individuals with special health care needs and elderly citizens through oral health professionals who donate their services. NFDH is an affiliate of the American Dental Association and state and local dental associations.
  
  
• National Institute of Dental and Craniofacial Research (NIDCR): Special Care Resources. Offers resources for families, educators, and health professionals about oral health management tailored to individuals with a variety of medical conditions. NIDCR is part of the National Institutes of Health (NIH). Recent publications include

  Practical oral care for people with developmental disabilities: Making a difference. (2004). Titles in the series are

  An introduction to practical oral care for people with developmental disabilities. (2004).
  Continuing education: Practical oral care for people with developmental disabilities. (2004).
  Dental care every day: A caregiver's guide. (2004).
  Practical oral care for people with autism. (2004).
  Practical oral care for people with cerebral palsy. (2004).
  Practical oral care for people with Down syndrome. (2004).
  Practical oral care for people with intellectual disability. (2008).
  Wheelchair transfer: A health care provider's guide. (2004).
  
  

• National Maternal and Child Oral Health Resource Center (OHRC). Provides information and materials to assist health professionals, program administrators, policymakers, and others in improving oral health services for infants, children, and adolescents, including those with special health care needs. OHRC is supported by the Maternal and Child Health Bureau (MCHB). Recent publications include

  Oral health for children and adolescents with special health care needs: Challenges and opportunities. (2005). [Fact sheet].

  Oral health services for children and adolescents with special health care needs: Resource guide. (2005).

  Strategies for improving the oral health system of care for children and adolescents with special health care needs. (2005). [Tip sheet].

Additional Electronic Publications and Online Tutorials

• Balzer J. 2004. Promoting the oral health of children with special health care needs: Opportunities for increased collaboration between state oral health and CSHCN programs. Jefferson City, MO: Association of State and Territorial Dental Directors. This paper examines the amount of collaboration taking place between state programs for oral health and those for children with special health care needs and makes recommendations about how more effective collaborative relationships can be established.
  
  
• Burtner P. 2004. Oral health care for persons with disabilities: An online continuing education course. Gainesville, FL: University of Florida College of Dentistry. This online continuing education course for oral health professionals presents information about providing oral health services to individuals with disabilities. Topics include demographic and social status, barriers to accessing oral health care, oral health considerations with major disabling conditions, and practical clinical information that will assist general dentists in safely providing appropriate oral health care to individuals with disabilities.
  
  
• Isman B, Newton RN. 2004. Oral conditions in children with special needs: A guide for health care providers, rev. ed. Los Angeles, CA: California Connections Project. This guide for health professionals describes oral conditions that can occur in children with special health care needs, including abnormalities in oral development, oral trauma, bruxism, oral infections, and gingival overgrowth.
  
  
• Lewin Group. 2004. Dental services for children with special health care needs: Treatment guidelines and Medicaid reimbursement options. Falls Church, VA: Lewin Group. This report describes the District of Columbia Oral Health Initiative, a program that provides comprehensive oral health services for children with special health care needs in two public schools. Topics include treatment guidelines for oral health services for children with special health care needs, Medicaid coverage for services and school-based health centers, managed care and examples of different reimbursement systems for children with special health care needs, and Medicaid coverage of special services.
  
  
• University, Community, Leaders, and Individuals with Disabilities Center at the University of Pittsburgh and University of Pittsburgh School of Dental Medicine. 2005. An oral health tutorial providing a brief overview of early childhood caries for non-dental professionals. Pittsburgh, PA: University of Pittsburgh School of Dental Medicine. This oral health tutorial is designed for non-oral health professionals who work with infants and children with special health care needs. It aims to help these professionals identify early signs of early childhood caries (ECC), differentiate between ECC and other oral heath problems, counsel families about prevention, and refer children with cavities to a dentist.
  

  
  
  

Parenting and Family Supports

Topics include parenting, respite care, and sibling support. Also see Bright Futures at Georgetown University, the Center for Children with Special Needs, the Center on Human Policy (CHP), Family Village, Family Voices, the Federation for Children with Special Needs (FCSN) , LD Online, the National Dissemination Center for Children with Disabilities (NICHCY), the National Health Law Program (NHeLP), New England SERVE, the Parent Advocacy Coalition for Educational Rights Center (PACER), the Parent Educational Advocacy Training Center (PEATC), and the Technical Assistance Alliance for Parent Centers (The Alliance). See the MCH Library's organizations resource list, Family resource centers. Also see the electronic newsletters and online discussion groups section.

• ARCH National Respite Network and Resource Center. Contains fact sheets, training manuals, evaluation guides, and other resources about respite care services for caregivers or families of individuals with disabilities or other special health care needs. Also contains contact information for state respite coalitions and a locator service to assist parents, caregivers, and professionals in locating respite services in their community. ARCH is a service of the Chapel Hill Training-Outreach Project.
  
  
• Beach Center on Disability. Includes reports and articles about a wide range of issues affecting families of children and adolescents with special health care needs. Also contains contact information for parent-to-parent support groups in each state. The Beach Center is a research and training center located at the University of Kansas.
  
  
• Exceptional Parent (EP). Contains articles about technology, health care, education, financial planning, and other issues for parents and families of children with special health care needs and the professionals who work with them. Also includes toy reviews for children with specific needs; a children's page; and a library of books, videotapes, and software. Directories of companies and organizations that develop products for those with special health care needs, schools, camps, residences and other special-needs-related organizations and associations are also provided. EP publishes Exceptional Parent Magazine.
  
  
• Parents Helping Parents: Helping Children with Special Needs. Offers information and links to resources about education, health, technology, and advocacy for families of children with special health care needs in any state, and provides information about training seminars and programs and a directory of services in California. Offers two online libraries of books and videotapes for parents and professionals about the special health care needs of children and their families. Also contains an online letter-writing tool for parents seeking an initial special education assessment and another tool to help parents prepare for an Individualized Education Plan (IEP) meeting.
  
  
• 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 with special needs most notably by matching parents seeking support with a trained and experienced veteran parent who has shared the experience of disability in the family. Also offers technical assistance and resources to parents interested in building, improving, and evaluating a program.
  
  
• Self-Help Group Sourcebook Online. Contains information about over 1,100 national and international self-help support groups for chronic illnesses and disabilities, bereavement, parenting, caregiver concerns, and other stressful life situations, and includes information about starting self-help groups. The database is compiled by the American Self-Help Group Clearinghouse.
  

Additional Publications

• May J, Wall T. 2004. Maine health care notebook. Orono, ME: University of Maine Center for Community Inclusion and Disability Studies. This notebook is an organizing tool designed to help families who have children and adolescents with special health care needs keep track of family, financial, and medical information about their child.
  
  
• Meyer DJ. 2004. The sibling slam book: What it's really like to have a brother or sister with special needs. Bethesda, MD: Woodbine House. Description and ordering information.
  
  
• Power PW, Dell Orto, AE. 2004. Families living with chronic illness and disability: Interventions, challenges, and opportunities. New York, NY: Springer Publishing. Description and ordering information.
  
  
• Stuve-Bodeen S. 2005. Best worst brother. Bethesda, MD: Woodbine House. Description and ordering information.
  

  
  
  

Rehabilitation

Also see the Consortium for Children and Youth with Disabilities and Special Health Care Needs, Exceptional Parent (EP), and Family Village.

• ABLEDATA. Provides information about assistive technology (AT) products and rehabilitation equipment available from domestic and international sources. ABLEDATA is funded by the National Institute on Disability and Rehabilitation Research (NIDRR).
  
  
• Alliance for Technology Access (ATA). Provides information to consumers and professionals about AT tools and services for individuals with disabilities. Also offers contact information for ATA centers across the country. ATA is a national network of AT resource centers, individual and organizational associates, and technology vendors and developers.
  
  
• assistivetech.net. Offers an online library of AT and disability-related resources. assistivetech.net is sponsored by the Georgia Tech Center for Assistive Technology and Environmental Access, the National Institute on Disability and Rehabilitation Research (NIDRR), and the Rehabilitation Services Administration (RSA).
  
  
• Family Center on Technology and Disability (FCTD). Presents reviews of AT materials for families of children and adolescents with disabilities on topics ranging from augmentative and alternative communication to wheelchair lifts. Also includes an organizations database, success stories, an online discussion series, and an electronic newsletter. AT funding, technology trends, AT supports for young children, research, and other aspects of AT are also addressed. Recent resources include

  Family information guide to assistive technology. (2005).

• National Institute on Disability and Rehabilitation Research (NIDRR). Contains information about its research programs and related activities aimed at maximizing the full inclusion, social integration, employment, and independent living of individuals of all ages with disabilities. NIDRR is a component of the Office of Special Education and Rehabilitation Services (OSERS). A recent publication is

  Guide to resources produced by National Institute on Disability and Rehabilitation Research (NIDRR) grantees: Infants, children, and youth with disabilities. (2004).

• National Rehabilitation Information Center (NARIC). Provides access to databases of information about literature, organizations, and Web resources about rehabilitation, disability, and AT. NARIC is funded by the National Institute on Disability and Rehabilitation Research (NIDRR).
  
  
• Rehabilitation Services Administration (RSA). Offers a wealth of information about its programs, grants, research, monitoring efforts, and other resources to help individuals with physical or mental disabilities obtain employment and live more independently through the provision of such supports as counseling, medical and psychological services, job training, and other individualized services. RSA is a component of the Office of Special Education and Rehabilitation Services (OSERS), Department of Education.
  
  
• Tots 'n Tech Research Institute (TnT). Offers research information about the use of AT to enhance the development of infants and toddlers with disabilities. Includes ideas from early intervention professionals about communication, mobility, eating, and play. TnT is an interuniversity collaboration between Thomas Jefferson University and Arizona State University.
  

  
  
  

Screening

Also see Bright Futures at Georgetown University, the Center for Health Care Strategies (CHCS), the March of Dimes (MOD), the National Center of Medical Home Initiatives for Children with Special Needs, and the National Dissemination Center for Children with Disabilities (NICHCY). In addition, see the education/early intervention section, which includes resources about early identification and intervention and the genetic services section, which includes several additional newborn screening resources. The Maternal and Child Health Library's Knowledge path: Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services includes guidelines for the frequency, timing, and content of health promotion and disease prevention services for infants, children, and adolescents. The Maternal and Child Health Library also offers two bibliographies about screening: (1) neonatal screening and (2) child developmental screening.

• American Academy of Pediatrics (AAP). Contains guidelines, schedules, health education materials, and other resources for strengthening newborn screening services and ensuring healthy development of infants, children, and adolescents. Resources include

  Bright Futures: Guidelines for health supervision of infants, children, and adolescents, 3rd ed. (2007).

• Commonwealth Fund. Contains program information and an extensive collection of reports about children's health and development that can be used for improving services to identify developmental and behavioral problems in early childhood. The Commonwealth Fund is a private foundation that supports independent research on health and social issues. Recent publications include

  How medical claims simplification can impede delivery of child developmental services. (2005).

  Quality of preventive health care for young children: Strategies for improvement. (2005).

• Developmental Behavioral Pediatrics Online (dbpeds.org). Contains screening tools, articles, research news, program and conference information, handouts for families, and other resources for health professionals to promote better care and outcomes for children, adolescents, and families affected by developmental, learning, and behavioral problems. dbpeds.org is funded by the Commonwealth Fund. Recent resources include

  Introduction to developmental and behavioral screening. (2005). This online tutorial provides information about techniques for screening children for developmental, behavioral, and emotional problems that can be used effectively and efficiently in the pediatric office setting. The tutorial includes background information on screening, an annotated list of screening tools, and parent handouts.

• National Academy for State Health Policy (NASHP). Contains program information and resources to help states improve the delivery of early childhood development services for low-income children and their families. The program, Assuring Better Child Health and Development (ABCD), is funded by the Commonwealth Fund. Recent publications include

  Key measurement issues in screening, referral, and follow-up care for young children's social and emotional development. (2005).

  Screening for behavioral developmental problems: Issues, obstacles, and opportunities for change. (2004).

• National Center for Hearing Assessment and Management (NCHAM). Contains a wealth of resources for health professionals, policymakers, program administrators, and families about early identification and management of hearing loss. NCHAM assists hospital-based universal newborn hearing screening and state-based early hearing detection and intervention programs in their efforts to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. NCHAM is located at Utah State University.
  
  
• National Center on Birth Defects and Developmental Disabilities (NCBDDD): Child Development. Includes information about developmental milestones and resources for developmental screening. Initiatives include

  Early Hearing Detection and Intervention (EHDI) Program. Offers program information and materials for professionals and families about about infant hearing loss and EHDI programs. Includes links to current screening guidelines, recommendations, and position statements related to infant hearing loss. Recent materials include

  • Just in time for pediatric primary care providers (2005) and Just in time for families (2005). These materials provide an overview of the EHDI process, including screening before ages 1, 3, and 6 months; communication choices for families with infants who have hearing loss; and early intervention. Other materials include a CD-ROM, a fact sheet, posters, parent guides, and a brochure about CDC's EHDI programs in states.

  Learn the Signs. Act Early. Provides fact sheets for families with developmental milestones from birth to age 5 that include a list of signs that could indicate a developmental problem.

  Pediatric Screening and Intervention Project. Includes information about this pediatric practice model that will be assessed for its effectiveness in increasing the number of children who receive EPSDT services, and developmental screening in particular, to ensure that their physical and psychosocial developmental needs are being met.

Additional Publications

• American College of Medical Genetics. 2005. Newborn screening: Toward a uniform screening panel and system. Rockville, MD: Maternal and Child Health Bureau. This report, made available for public comment, describes an analysis of the scientific literature on the effectiveness of newborn screening and gathers expert opinion to delineate the best evidence for screening specified conditions.
  
  
• Association of Maternal and Child Health Programs (AMCHP). 2005. Tune in to newborn hearing screening. Washington, DC: Association of Maternal and Child Health Programs (AMCHP). This policy brief provides information on newborn hearing screening. It introduces the issue of children born with hearing loss, discusses the state and the federal role in providing screening, and offers recommendations.
  
  
• Association of State and Territorial Health Officials (ASTHO). 2005. Financing state newborn screening systems in an era of change. Washington, DC: Association of State and Territorial Health Officials (ASTHO). This report provides an overview of methods of financing expanded state newborn screening programs and examines the experiences in seven states.
  
  
• Association of State and Territorial Health Officials (ASTHO). 2004. State strategies to promote coordination of the newborn screening system. Washington, DC: Association of State and Territorial Health Officials (ASTHO). This issue brief highlights ways state public health agencies can support a coordinated newborn screening system that benefits infants, families, and providers.
  
  
• Ferebee A. 2004. Childhood vision: Public challenges and opportunities. Washington, DC: Center for Health and Health Care in Schools (CHHCS). This policy brief provides a framework for policymakers, educators, and parents to assess the adequacy of current strategies to identify children with vision problems. The brief outlines issues in vision testing for children, describes programs and policies currently in place, summarizes select state and federal initiatives, and discusses policy options for ensuring that children's vision problems are identified and treated in a timely manner.
  
  
• Georgia Newborn Screening Program. 2004. Georgia newborn screening manual for metabolic diseases and hemoglobinopathies. Atlanta, GA: Georgia Division of Public Health. This report describes the Georgia Newborn Screening Program, a program requiring that every live born infant have a blood test for nine metabolic disorders and for sickle cell disorders. The report provides an overview of the program; discusses its screening, testing and reporting, and diagnostic activities; and describes its follow-up programs.
  
  
• Georgia Newborn Screening Program. 2004. Georgia Newborn Screening Program physician pocket reference. Atlanta, GA: Georgia Division of Public Health. This pocket card for physicians provides concise information about 10 disorders that can be identified during newborn screening so that early intervention can be implemented.
  
  
• Joint Commission on Health Care. 2005. Review of newborn screening in Virginia (HJR 164, 2004): Report of the Joint Commission on Health Care to the Governor and the General Assembly of Virginia. Richmond, VA: Virginia General Assembly. This report to the Virginia Governor and General Assembly reviews information regarding newborn screening programs for metabolic disorders including disorders screened in other states, and the benefits and costs associated with screening.
  
  
• Meisels SJ, Atkins-Burnett S. 2005. Developmental screening in early childhood: A guide, 5th ed. Washington, DC: National Association for the Education of Young Children (NAEYC). This book discusses the basics of screening used to identify which children may have learning problems or disabilities, social or emotional concerns, or developmental problems and offers advice for selecting an appropriate screening instrument and for setting up a screening program.
  

  
  
  

Sports, Recreation, and the Arts

Also see Easter Seals, Exceptional Parent (EP), and Family Village.

• Disabled Sports USA. Contains program information for this national network of community-based chapters offering a variety of sports rehabilitation and recreation programs to anyone with a permanent physical disability.
  
  
• National Center on Accessibility (NCA). Includes technical reports, educational materials, products listings, and program information for consumers; health professionals; and the parks, recreation, and tourism industries about recreation-related accessibility issues for people with disabilities. NCA is part of Indiana University's School of Health, Physical Education, and Recreation.
  
  
• National Center on Physical Activity and Disability (NCPAD). Offers a virtual library of resources about physical activity for people with special health care needs. Includes fact sheets about activities, games, recreational pursuits, and sports that have been adapted to the needs of people with disabilities. NCPAD is located at the University of Illinois at Chicago.
  
  
• National Sports Center for the Disabled (NSCD). Contains program and event information about this outdoor therapeutic recreation organization for children, adolescents, and adults with disabilities.
  
  
• National Therapeutic Recreation Society (NTRS). Offers program information and resources about therapeutic recreation services for people with disabilities in clinical facilities and in the community. NTRS is a branch of the National Recreation and Park Association.
  
  
• Special Olympics International (SOI). Contains program and event information for SOI's year-round sports training and competitions for children, adolescents, and adults with mental retardation and other developmental disabilities. Describes SOI's Healthy Athletes initiative, which offers health screenings and education to Special Olympics athletes and trains health professionals about the needs and care of people with intellectual disabilities. SOI is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive, and respected members of society through sports training and competition.
  
  
• VSA arts. Contains information about this national arts-based program in creative writing, dance, drama, music, and the visual arts for people with disabilities. Includes links to online interactive exhibits and other arts, disability, and education Web sites; publications; and educational products. Also contains information and materials for Express Diversity!, VSA art's educational program promoting disabilities awareness through art education projects for schoolchildren. VSA arts (formerly Very Special Arts) also offers a database of educational research on the arts and people with disabilities. VSA arts was founded as an educational affiliate of the John F. Kennedy Center for the Performing Arts.
  

Additional Electronic Publication

• McMillen C, Packer J, Cuff D, Lester M, Stanger C, Butler L. (2005). Let's play: A guide to toys for children with special needs. New York, NY: American Federation for the Blind (AFB). This guide presents descriptions of toys appropriate for children with physical impairments, hearing impairments, blindness and low vision, and developmental disabilities. The toys were tested by more than 100 children with a variety of special health care needs at 10 centers across the country.
  

  
  
  

State Information

• To identify resources for and about state programs for children and adolescents with special health care needs, see the Agency for Healthcare Research and Quality (AHRQ), the Center for Children with Special Needs, the March of Dimes (MOD), NICHCY's state resource sheets, the Healthy and Ready to Work National Center (HRTW), Family Voices, the Institute for Child Health Policy (ICHP), the Association of Maternal and Child Health Programs (AMCHP), the Data Resource Center for Child and Adolescent Health (DRC), the National Center for Health Statistics (NCHS), the Title V Information System (TVIS), the National Early Childhood Technical Assistance Center (NECTAC), the Technical Assistance Alliance for Parent Centers (The Alliance), the Center for Health Care Strategies (CHCS), the Centers for Medicare and Medicaid Services (CMS), Insure Kids Now, the Medicaid Reference Desk, the National Newborn Screening and Genetics Resource Center (NNSGRC), the National Center of Medical Home Initiatives for Children with Special Needs, the ARCH National Respite Network and Resource Center, the National Academy for State Health Policy (NASHP), and the National Center for Hearing Assessment and Management (NCHAM).
  
  
• Additional electronic publications about state programs for children and adolescents with special health care needs can be found in the following sections: Community Interactions: Community-Based Care and Service Coordination, Data About Children and Adolescents with Special Health Care Needs, Education/Early Intervention, Financing Services and Health Insurance, Medical Home, Nutrition, Oral Health, and Screening.
  
  
• To find available state and local education, mental health, family support, child care, health care, and other services that can address child and family needs, see our knowledge path, Community services locator: an online directory for finding community services for children and families.
  

  
  
  

Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health Library.
Reviewers: Suzanne Bronheim, Ph.D., Georgetown University Center for Child and Human Development; Olivia K. Pickett, M.A., M.L.S., Maternal and Child Health Library; Savithri Nageswaran, M.D., M.P.H., Wake Forest University School of Medicine; Ceci Shapland, R.N., M.S.N., Healthy and Ready to Work National Center.