October 2009

Introduction

This knowledge path about caring for children and youth with special health care needs has been compiled by the Maternal and Child Health Library at Georgetown University. It offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and special education, financing services, rehabilitation, screening, and transition. This knowledge path for health professionals, program administrators, policymakers, educators, researchers, and families will be updated periodically.

Related knowledge paths:
Asthma in Children and Adolescents
Autism Spectrum Disorders
Community Services Locator: An Online Directory for Finding Community Services for Children and Families
Diabetes in Children and Adolescents
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents

Overview

For information on the prevalence of children and youth with special health care needs in the United States and in each state, the demographic characteristics of these children, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive, see the introduction to the Maternal and Child Health Bureau (MCHB) publication, National Survey of Children with Special Health Care Needs Chartbook 2005–2006 (2008). The overview includes MCHB's widely accepted definition of children with special health care needs: "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."

General Resources for Professionals

Web Sites

• 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, evidence reports, and research findings about children with special health care needs. Offers access to the Healthcare Cost and Utilization Project (HCUP), the Medical Expenditure Panel Survey (MEPS), the National Guideline Clearinghouse (NGC), and the National Quality Measures Clearinghouse (NQMC). Resources include
  
  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 Children's Health Insurance Program (CHIP), Title V, and other health programs for children and youth, including those with special health care needs.
  
  Critical Analysis of Care Coordination Strategies for Children with Special Health Care Needs. (2007). [Report].
  
  Health Care Innovations Exchange. Profiles successful and attempted innovations in health care delivery and presents tools to assess, measure, promote, and improve the quality of health care for a variety of populations, including children and youth with special health care needs.
  
  Health Information Technology for Children Toolbox. Presents learning modules and tools for promoting children's health and well-being through health information technology (IT). Links to a series of articles presenting basic information about key aspects of health IT (e.g., electronic medical record systems, electronic prescribing, health information exchange, telehealth).
  
  Mental Health Needs of Low-Income Children with Special Health Care Needs. (2009). [Issue brief].
  
  
• American Academy of Pediatrics (AAP): National Center for Medical Home Implementation. Presents a wealth of resources for health professionals about the medical home approach to quality, comprehensive health care for all children and youth, including those with special health care needs. Includes tools for developing and implementing a medical home, training programs and materials, information about state initiatives and resources, screening tools, and an electronic newsletter. Recent resources include
  
  Act Early on Developmental Concerns: Partnering with Early Intervention (2008). [Webcast materials].
  
  Building Your Medical Home. (2009). [Toolkit].
  
  Medical Home Implementation Teleconference Series. (2009).
  
  What Is a Medical Home? (2009). [Talking points].
  
  
• Association of University Centers on Disabilities (AUCD). Presents program, funding, legislative, training, and conference information to advance policy and practice for and with individuals with developmental and other disabilities, their families, and communities. Content includes newsletters, brochures, program directories, and other publications; a portrayal of people with disabilities; and resources on public policy issues of concern to people with disabilities, such as abuse and neglect, civil rights, community-based services and supports, education, employment, emergency preparedness, and wellness. AUCD is a membership organization that supports and promotes a national network of university-based interdisciplinary programs.
  
  
• Centers for Disease Control and Prevention (CDC). Contains information in English and Spanish about diseases, disabilities, health risks, and health promotion and provides access to publications, data, tools, and other resources. CDC's A to Z Index is a useful navigation tool for this information-dense Web site. Resources and initiatives include
  
  National Center on Birth Defects and Developmental Disabilities (NCBDDD). Contains journal articles, podcasts, fact sheets, conference proceedings, and other publications and information about its surveillance, research, technical assistance, and health education activities. NCBDDD works to identify the causes of birth defects and developmental disabilities, help children to develop and reach their full potential, and promote health and well-being among people of all ages with disabilities, including blood disorders. Also see NCBDDD's resources and initiatives about screening.
  
  Morbidity & Mortality Weekly Report (MMWR). Presents data based on weekly reports to CDC by state health departments about infectious and chronic diseases, environmental hazards, natural or human-generated disasters, occupational diseases and injuries, intentional and unintentional injuries, and other topics of interest to the public health community. Search for articles by entering the name of a chronic illness or disability.
  
  Also see Data2010, the National Center for Environmental Health (NCEH), and CDC's Parent Portal.
  
  
• Champions for Inclusive Communities (ChampionsInC). Presents resources for states to develop and improve systems of care. ChampionsInC is a national leadership and resource center designed to support states and communities in organizing services so families of children and youth with special health care needs can use them easily and families are satisfied. Recent resources include
  
  Champions Newsletter. This bi-weekly electronic newsletter describes recent resources, news, funding opportunities, and successful programs about building a system of care within a community.
  
  Defining a Community-Based System of Services for Children and Youth with Special Health Care Needs. (2008). [Slide show and transcript].
  
  Equality of Health for CYSHCN: Contributing Factors and Help for Families and Communities. (2008). [Issue brief].
  
  Examining State Capacity for Achieving a Community-Based Service System for Children and Youth with Special Health Care Needs. (2009). [Needs assessment tool].
  
  
• Department of Health and Human Services: Health Information Privacy. Presents information about the rights and protections provided by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule.
  
  
• Georgetown University Center for Child and Human Development (GUCCHD). Presents program, conference, and training information; publications; and other resources about developing effective services and supports within comprehensive service delivery systems to improve quality of life for children and youth with special health care needs and their families. Recent initiatives include
  
  National Technical Assistance Center for Children's Mental Health. Offers resources about effective practices to transform mental health and substance abuse services delivery systems for children and youth who have, or are at risk for, mental health problems and their families. A recent publication is
  
  
  • Building Systems of Care: A Primer for Child Welfare. (2008).
    
    
  Also see GUCCHD's National Center for Cultural Competence (NCCC).
  
  
• Healthy People 2010. Offers information and publications about this national health-promotion and disease-prevention initiative that is coordinated by the Office of Disease Prevention and Health Promotion (ODPHP). 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 youth with special health care needs. See Data2010 for data about the objectives. Also learn how to participate in the development of Healthy People 2020.
  
  
• Maternal and Child Health Bureau (MCHB). Describes MCHB's projects and initiatives on behalf of America's women, infants, children, adolescents, and their families. Outlines a national agenda for state Title V programs for children and youth with special health care needs. Endorsed by more than 70 professional and voluntary organizations, the agenda calls for the development of systems of care that are family centered, community based, coordinated, and culturally competent. MCHB programs include the Title V block grant to states (see the Title V Information System for state and federal budget and expenditure data for programs and services for children and youth with special health care needs). The Maternal and Child Health Library and the Discretionary Grant Information System (DGIS) offer additional information about the initiatives and programs supported by MCHB that pertain to children and youth with special health care needs. Recent resources include
  
  Long-Term Follow-Up After Diagnosis Resulting From Newborn Screening. (2008). [Committee report].
  
  Medical Homes for Children. (2009). [Webcast].
  
  National Survey of Children with Special Health Care Needs Chartbook 2005–2006. (2008). Also see the Data Resource Center for Child and Adolescent Health (DRC) for access to the data and related resources.
  
  Recommendations for Improving Access to Pediatric Subspecialty Care Through the Medical Home. (2008). [Report].
  
  
• Medical Home Portal. Presents information to help build a better medical home, screen for medical problems using the latest tools, learn about medical devices, and help children get the most from their school experience. Includes information about newborn screening and specific diagnoses and conditions. The portal is a service of the University of Utah.
  
  
• National Institutes of Health (NIH). Presents a wealth of resources for those seeking information about people with special health care needs. Navigate using the program summary that links to each of NIH's 27 institutes and centers. Also see the following NIH-supported resources: ClinicalTrials.gov, Drug Information Portal, Health Services Research Projects in Progress (HSRProj), MedlinePlus, PubMed, and TOXNET.
  
  
• New England SERVE: Promoting Quality Systems of Care for Children with Special Health Care Needs and Their Families. Offers resources about improving systems for delivering and financing care for children with special health care needs by promoting family-centered care, responsible health care financing, care coordination, and medical home partnerships. 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. Recent reports include
  
  Power of Partnership: Sixteen Family-Professional Partnerships That Are Making a Difference for Children with Special Health Care Needs. (2008).
  
  Preparing for Practice: Addressing Special Health Care Needs in Pediatric Residency Programs. (2008).
  
  Structure and Spark! Building Family-Professional Partnerships to Improve Care for Children with Special Health Needs. (2008).
  

  
  

Additional Electronic Publications

• Antonelli RC, McAllister JW, Popp J. 2009. Making Care Coordination a Critical Component of the Pediatric Health System: A Multidisciplinary Framework. New York, NY: Commonwealth Fund. This report proposes a framework for care coordination in a high-performing pediatric health care system. The framework includes a definition of care coordination; outlines its principal characteristics, competencies, and functions; and sets forth a detailed process for its delivery. It also describes a model to implement care coordination across all health care settings and related disciplines.
  
  
• Association of Maternal and Child Health Programs (AMCHP), Association of Teachers of Maternal and Child Health (ATMCH). 2008. Implementing the Medical Home Model in Minnesota: A Case Study. Washington, DC: Association of Teachers of Maternal and Child Health (ATMCH). This guide involves an extensive data-based case study of Minnesota's efforts to promote the medical home model of care for children with special health care needs. It is designed for classroom use by teachers of public health, MCH, health policy, evaluation, and health education.
  
  
• 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 report presents a national blueprint to improve the health of individuals with mental retardation and to include them fully in health systems that meet their needs.
  
  
• 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 healthy lives as contributing members of their communities.
  
  
• Turnbull HR, Stowe MJ, Klein S. 2008. Matrix of Federal Statutes and Federal and State Court Decisions Reflecting the Core Concepts of Disability Policy, rev. ed. Lawrence, KS: Beach Center on Disability. This matrix defines 18 core concepts of disability policy, briefly describes the federal statutes that advance each concept, and summarizes the decisions of the Supreme Court and a few other significant lower-court decisions interpreting the concept or the statute.
  

  
  

Databases

The databases listed below are excellent tools for identifying data, additional literature and research, and programs about the care and development of children and youth 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.

Data

• Data2010: The Healthy People 2010 Database. Contains the most recent monitoring data for tracking Healthy People 2010. To obtain data about children and youth 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 data from the National Survey of Children with Special Health Care Needs. View national and state data about the prevalence and impact of special health care needs among children and youth and the extent to which these children and youth have medical homes, adequate health insurance, access to needed services, care coordination, and satisfaction with care. Generate profiles by state and health condition. Includes survey information, presentations, and journal articles. DRC is a project of the Child and Adolescent Health Measurement Initiative (CAHMI), and the survey is sponsored by the Maternal and Child Health Bureau (MCHB). Also see MCHB's National Survey of Children with Special Health Care Needs Chartbook 2005–2006 (2008).
  
  
• Healthcare Cost and Utilization Project (HCUP): HCUPnet. Provides access to health statistics and information on hospital inpatient and emergency department utilization at the national and state levels, including use of hospitals by children. HCUP is an initiative of the Agency for Healthcare Research and Quality (AHRQ).
  
  
• Medical Expenditure Panel Survey (MEPS). Contains data on the specific health services that Americans use, how frequently they use them, the cost of these services, and how they are paid for, as well as data on the cost, scope, and breadth of health insurance held by and available to the U.S. population. Data is collected about children's health and chronic conditions. MEPS is sponsored by 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 for patients. Search for measures that target a particular disease/condition or treatment/intervention. The database is sponsored by the Agency for Healthcare Research and Quality (AHRQ).
  
  
• 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 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).
  
  
• Also see the Catalyst Center and the report by the State Health Access Data Assistance Center (SHADAC).
  

Literature and Research Databases

• 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 Reviews. Presents systematic reviews of health care interventions internationally. To identify reviews, enter the name of the condition in the search box or view the list of topics. 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.
  
  
• 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 box. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.
  
  
• Drug Information Portal. Presents information about more than 17,000 drugs for health professionals, researchers, and consumers. Search by drug name or category. Drug information records include a description of the drug and links to resources for additional information. The portal is a service of the National Library of Medicine (NLM).
  
  
• 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 library's bibliographic database is
  
  MCHLine®. Comprises an online catalog of materials in the Maternal and Child Health Library. A selection of recent library items on the topic is located in the following bibliographies: Adolescents with Special Health Care Needs, Children with Special Health Care Needs, Children with Special Health Care Needs: Child Care, Children with Special Health Care Needs: Guidelines and Standards, and Children with Special Health Care Needs: Managed Care.
  
  Also see the library's organizations and programs databases.
  
  
• 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 Institutes of Health (NIH) Research Portfolio Online Reporting Tool (RePORT): RePORTER. Provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH-supported research. To identify information, enter the name of the condition in the Term Search field and click on Submit Query to get your results. Narrow your search by selecting a state or adding terms to other search fields.
  
  
• National Organization for Rare Disorders (NORD): Rare Disease Database. Presents information about more than 1,150 diseases. Enter a disease name in the search field or browse the list of diseases covered in the database. Also see NORD's Organizational Database.
  
  
• PubMed. Contains over 18 million citations for biomedical articles that date back to 1948. These citations are from MEDLINE and additional life science journals. PubMed includes links to 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., (disabled children OR chronic disease) AND 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).
  
  
• Also see the Education Resources Information Center (ERIC) Database, the National Rehabilitation Information Center (NARIC), and TOXNET.
  

Programs Databases

• Community Pediatrics Projects Database. Comprises an archive of community pediatrics grant projects. Identify projects by selecting a topic (e.g., asthma) or by entering a keyword (e.g., special health care needs). The database is a service of the American Academy of Pediatrics (AAP).
  
  
• Discretionary Grant Information System (DGIS). Contains information for more than 900 grants issued by the Maternal and Child Health Bureau (MCHB). Search for financial data, program data, and performance measures concerning children with special health care needs. Also search the abstracts of MCHB discretionary grants by entering special health care needs, or, more specifically, the name of the condition in the Search Word or Phrase field. Click on Search to get your results. To find products and publications produced by MCHB training grantees, select Program Data, Training, and Search Products and Publications. Type special health care needs, or, more specifically, the name of the condition in the search field and click on Exact Phrase. Click on Search to get your results.
  
  
• Health Services Research Projects in Progress (HSRProj). Provides information about ongoing health services research and public health projects. To identify projects, enter special health care needs, or, more specifically, the name of the condition in the search box. Click on Search to get your results. HSRProj is funded by the National Library of Medicine (NLM).
  
  
• Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains two databases to identify organizations and programs that focus on children and youth 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) through October 1, 2004. Many of the projects focus on children with special health care needs. To identify projects, enter the term "children with special health care needs", or, more specifically, the name of the condition in the abstract field of the database search form. Final reports from these projects are available online and include
  
  
  • Coordinating Care for Children with Chronic Conditions in Primary Care. (2008).
    
    
  • See MCHB's Discretionary Grant Information System (DGIS) for information on projects funded after October 1, 2004.
    
    
• National Organization for Rare Disorders (NORD): Organizational Database. Presents information about more than 2,000 organizations that assist people affected by rare disorders. Enter the organization name or the disease name to search for organizations or browse the list of organizations covered in the database. Also see NORD's Rare Disease Database.
  
  
• Also see the National Rehabilitation Information Center (NARIC).
  

  
  

Resources for Families

• Find Care, Services, and Support
• Communicate Online
• Web Sites

Find Care, Services, and Support

• Disability.gov: Information by State. On the left sidebar, select a state; click go; then select a subject from the list to find state information and resources for people with disabilities and their families.
  
  
• Exceptional Parent Magazine. Offers an annual resource guide containing directories of organizations, associations, products, and services for families who have children and youth with disabilities. To receive a free copy, call (800) 372-7368 (E-PARENT).
  
  
• Family Support Center on Disabilities: Knowledge and Involvement Network (KIN). Offers a set of online discussion forums for individuals with disabilities and their families about family and community supports; health, mental health, and wellness; assistive technology; life skills; housing; education; employment; recreation and leisure; financial support and government benefits; transportation; fundraising; and funding sources and supports for groups and organizations.
  
  
• Family Voices (FV). Offers Family Voices in Your State and Family to Family Health Information Centers (F2F HICs) to help families find the resources and services to provide and finance health care for their children.
  
  
• Insure Kids Now. Contains links to each state's child and adolescent health insurance program Web site. Available in English and Spanish. Telephone: (877) 543-7669 (KIDS-NOW).
  
  
• Mothers United for Moral Support (MUMS) National Parent-to-Parent Network. Provides a networking system for parents or caregivers of children and youth with special health care needs that matches them with other parents whose children or youth have the same or similar conditions. The network includes over 21,000 families from 56 countries covering over 3,500 disorders. Parents can exchange medical information and contact information for doctors, clinics, and research programs and can provide each other with emotional support.
  
  
• National Association of Councils on Developmental Disabilities. Presents contact information for state and territorial councils on developmental disabilities, which aim to develop and sustain inclusive communities and self directed services and supports for individuals with developmental disabilities and their families.
  
  
• Parent to Parent USA (P2P USA). Presents contact information for statewide parent to parent programs. The programs provide emotional support and information to families of children and youth with special health care needs. In particular, the programs match parents seeking support with trained and experienced veteran parents who have shared the experience of disability in the family. P2P USA also offers technical assistance and resources to parents interested in building, improving, and evaluating a program.
  
  
• Self-Help Group Sourcebook Online. Contains information on 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.
  
  
• See the Maternal and Child Health Library's Community Services Locator: An Online Directory for Finding Community Services for Children and Families.
  
  
• Also see the ARCH National Respite Network and Resource Center, MedlinePlus, the National Dissemination Center for Children with Disabilities (NICHCY) and Specialized Training of Military Parents (STOMP).
  

  
  

Communicate Online

• CarePages. Create a free, personal, private Web page to help families and friends communicate when someone is receiving care. Also offers online discussion forums, blogs, stories of inspiration, and tips on how to support a loved one.
  
  
• CaringBridge. Create a free, personalized Web site that supports and connect loved ones during critical illness, treatment, and recovery.
  
  
• Friends' Health Connection (FHC) Online Community. Join to find members with similar health care needs to exchange friendship and support. Includes groups for family members and caregivers. Resources include message boards, blogs, and online lectures.
  

  
  

Web Sites for Families

• ARCH National Respite Network and Resource Center. Presents fact sheets, training manuals, and evaluation guides about respite services for caregivers and families. Also contains contact information for state respite coalitions and a tool for locating community respite services.
  
  
• Beach Center on Disability: Wisdom-Based Action. Presents resources for families about planning the transition from early intervention to preschool, advocating for care coordination, and gaining emotional well-being. Also includes resources that address the special needs of Asian-American families, children who have received cochlear implants, and individuals seeking customized employment.
  
  
• Center for Children with Special Needs. Provides tips and tools to help families plan, organize, coordinate, and keep track of important information about their children's care. Includes a guide to getting started after a new diagnosis, strategies for coping, emergency preparedness information, care plans for youth, and resources to help families prepare for their children's adjustment and interaction in child care and school.
  
  
• Disability.gov. Links to government resources for people with disabilities on the following topics: civil rights, community life, education, emergency preparedness, employment, health, housing, income support, technology, and transportation. Also find information by state.
  
  
• Exceptional Parent (EP). Contains articles about technology, health care, education, family and community, financial planning, mobility, sports and recreation, and other issues for families. Also see EP's annual resource guide.
  
  
• Family Support Center on Disabilities: Knowledge and Involvement Network (KIN). Presents information about many issues faced by individuals with disabilities and their families. Includes a set of online discussion forums, a monthly electronic newsletter, personal stories, resources for getting involved, and links to Spanish-language resources.
  
  
• Family Village. Links to a wealth of resources for people with cognitive and other disabilities, their families, and their service providers. Includes resources about specific diagnoses, adaptive products and technologies, adaptive recreational activities, education, legal issues, respite care, disability-related media and literature, online discussion groups, and parent-to-parent matching programs.
  
  
• Family Voices (FV): Bright Futures for Families. Offers materials for families and communities to promote and improve the health and well-being of all children. Also see FV's state contacts and family advocacy tools.
  
  
• Medical Home Portal. Presents information about responding to a diagnosis, siblings of children with special health care needs, managing and coordinating care, family supports, advocacy, terminology, record keeping, newborn screening, and specific diagnoses and conditions.
  
  
• Sibling Support Project. Presents information about its program and workshops for the siblings of children with special health care needs and developmental needs. Includes online discussion groups for siblings and for parents of the siblings. Also presents publications for purchase that are for and about siblings.
  
  
• Social Security Online: Benefits for Children With Disabilities. Presents information for the parents, caregivers, or representatives of children and youth under age 18 who have disabilities that might make them eligible for Supplemental Security Income payments. Also presents information for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance benefits.
  
  
• Specialized Training of Military Parents (STOMP). Presents fact sheets and other materials and an online discussion group for military families of children with special health care needs. Search by state to find contact information for volunteers in each state who are parents of children with special health care needs and have experience in raising their children in military communities and traveling with their spouses to different locations.
  
  
• Also see MedlinePlus and the Drug Information Portal. See too the Maternal and Child Health Library's knowledge path, Health Insurance and Access to Care for Children and Adolescents and the organization list, Family Resource Centers.
  
  
• Note: Many of the resources presented in the following section of this knowledge path, Resources on Specific Aspects of Care and Development, contain information for families.
  

  
  

Resources on Specific Aspects of Care and Development

• Adoption
• Advocacy
• Child Care and Early Childhood Programs
• Chronic Illnesses and Disabilities
• Cultural Competence
• Early Intervention and Special Education
• Environmental Concerns
• Financing Services
• Foster Care
• General Health, Wellness, and Safety Resources
• Genetics
• Hospice and Palliative Care
• Hospitals and Patient Travel and Lodging
• Mental Health
• Nutrition
• Oral Health
• Rehabilitation
• Screening
• Sports, Recreation, and the Arts
• Transition
• Universal Design

Adoption

• Child Welfare Information Gateway: Adoption. Offers an electronic resource guide on all aspects of domestic and intercountry adoption, including adoption from foster care. Includes information for prospective and adoptive parents; information about searching for birth relatives; and resources for professionals on recruiting adoptive families, preparing children and youth, supporting birth parents, and providing post-adoption services. The gateway is a service of the Department of Health and Human Services (DHHS).
  
  
• North American Council on Adoptable Children (NACAC). Presents information and materials about how to adopt a child, state adoption subsidy programs, parent support groups and other forms of post-adoption support, and adoption-policy education and advocacy. NACAC promotes and supports permanent families for children and youth in the United States and Canada, many of whom have special health care needs and have been in foster care.
  
  
• See the Maternal and Child Health Library's organizations resource list, Adoption and Foster Care, which includes several organizations focused on expanding adoption opportunities for infants, children, and youth with special health care needs.
  

  
  

Advocacy

• Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS). Presents fact sheets, articles, position papers, and other resources for families, educators, and policymakers about the risks of using aversive interventions, restraints, and seclusion and the benefits of using positive behavior supports to respond to or control the behavior of children and youth in schools, treatment programs, and residential facilities. Includes steps parents can take to protect their children from abusive interventions.
  
  
• Department of Justice: Americans with Disabilities Act (ADA). Presents information and technical assistance about the ADA. Includes a guide to disability rights laws.
  
  
• Family Voices (FV). Presents resources in English and some in Spanish to help families make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. FV is a national grassroots organization working to achieve family-centered care for all children and youth with special health care needs. Resources and initiatives include
  
  Families Partnering with Providers: Tips to Help Families Build Effective Partnerships with Their Child's Health Care Providers. (2007). [Booklet].
  
  Family-Centered Care Self-Assessment Tools. (2008). [Family Tool, Provider Tool, User's Guide].
  
  Friday's Child. [Electronic newsletter]. Contains information for existing and emerging family leaders on topics such as leadership, mentoring, partnering, and team building.
  
  Kids As Self-Advocates (KASA). Offers articles, fact sheets, personal narratives, and Spanish-language resources about leadership and self-advocacy from this national grassroots network of youth with special health care needs.
  
  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.
  
  Also see FV's Bright Futures for Families, Family to Family Health Information Centers (F2F HICs) and Family Voices in Your State.
  
  
• Federation for Children with Special Needs (FCSN). Presents resources for parents and parent organizations working together on behalf of children and youth with special health care needs and their families. FCSN operates a parent center in Massachusetts that offers a variety of services to parents, parent groups, and others who are concerned about children with special health care needs.
  
  
• National Council on Disability (NCD). Presents reports, position papers, an electronic newsletter, and an online discussion group about guaranteeing equal opportunity for all individuals with disabilities and empowering individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. Topics include the ADA and other civil rights laws, emergency preparedness, employment, health care, technology, and transportation. NCD is an independent federal agency that makes 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, and transportation, as well as 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. Recent publications include
  
  School Is Not Supposed to Hurt: Investigative Report on Abusive Restraint and Seclusion in Schools. (2009).
  
  
• National Organization on Disability (NOD). Offers information and links to resources about employment, community involvement, politics, religion, education, transportation, health care, technology, and emergency preparedness for individuals with disabilities and their families. Includes guidelines for writing about disability and disability etiquette tips. NOD aims to increase the participation of people with disabilities in all aspects of life by raising disability awareness through programs and information.
  
  
• Kutz GD. 2009. Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers. Washington, DC: Government Accountability Office (GAO). This report provides an overview of seclusion and restraint laws applicable to children in public and private schools, reports on allegations of student death and abuse from the use of these methods, and examines the facts and circumstances surrounding cases where a student died or suffered abuse as a result of being secluded or restrained.
  
  
• Also see the Association of University Centers on Disabilities (AUCD) newsletter, Legislative News in Brief, which features weekly updates on what is happening in Congress on issues affecting people with disabilities and their families. See too the Technical Assistance Alliance for Parent Centers (The Alliance).
  

  
  

Child Care and Early Childhood Programs

• 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. Includes an online directory of local child care resource and referral 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 Aware is a program of the National Association of Child Care Resource and Referral Agencies (NACCRRA).
  
  
• Child Care Plus+. Contains fact sheets, assessment tools, a newsletter, and other resources for purchase by families and child care providers for including children with special health care needs in early childhood programs. Child Care Plus+ is part of the Center on Inclusion in Early Childhood located at the University of Montana.
  
  
• Early Childhood Learning and Knowledge Center (ECLKC): Disabilities. Presents resources about program planning, health and development issues, working with families, and staff support and supervision for including and supporting children with disabilities in Head Start, a national program that serves the development needs of infants and children from birth through age 5 and their families with low incomes through the provision of education, health, nutrition, social, and other services. Includes an online directory of Head Start programs. ECLKC is a service of the Office of Head Start.
  
  
• SpecialQuest Birth to Five. Presents a multimedia library of training materials, discussion forums, directories, and an electronic newsletter about providing inclusive early childhood services for infants and children from birth through age 5 with disabilities and their families. SpecialQuest is funded by the Office of Head Start.
  
  
• 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 high-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).
  
  
• Sweet M. 2008. A Thinking Guide to Inclusive Childcare for Those Who Care About Young Children with and Without Disabilities. Madison, WI: Disability Rights Wisconsin. This guide offers ideas and strategies to support staff in developing child care practices that consider the needs of individual children and promote an inclusive experience for the families of children in child care.
  
  
• Wisconsin Child Care Information Center. 2007. Think Big, Start Small: Together Children Grow. Quality Child Care for Children with Special Needs. Madison, WI: Wisconsin Child Care Information Center. This guide offers information about providing high-quality child care for children with special health care needs. It includes strategies for success and information about what to do when a child care provider refuses to care for a child with a disability.
  
  
• Also see the section, Early Intervention and Special Education.
  

  
  

Chronic Illnesses and Disabilities

• To identify resources about specific conditions, see CDC's A to Z Index, MedlinePlus, and the National Organization for Rare Disorders (NORD) Rare Disease Database.
  
  
• Also see the Maternal and Child Health Library's resource brief, Genetics, the MCH Organizations Database, and knowledge paths on the following specific conditions:
  
  Asthma in Children and Adolescents
  Autism Spectrum Disorders
  Diabetes in Children and Adolescents
  Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents
  
  
• Also see the Exceptional Parent (EP) annual resource guide.
  

  
  

Cultural Competence

• National Center for Cultural Competence (NCCC). Presents resources to increase the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service-delivery systems for children and youth with special health care needs and their families. Provides tools and processes for individual and organizational self-assessment, a consultants list, training modules, a section about working with linguistically diverse populations, highlights of promising practices in cultural and linguistic competence, and publications that include Spanish-language materials. NCCC is part of the Georgetown University Center for Child and Human Development. Recent resources include
  
  And the Journey Continues: Achieving Cultural and Linguistic Competence in Systems Serving Children and Youth with Special Health Care Needs and Their Families. (2007). [Report].
  
  Body/Mind/Spirit: Toward a Biopsychosocial-Spiritual Model of Health. Presents a framework for health professionals on spirituality and religion in health. Addresses the potential role of spirituality and religion in how an individual copes with illness, health care decision-making, and health outcomes. Includes literature reviews, international and domestic publications, references, and other resources.
  
  Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care. (2007).
  
  Incorporating Cultural and Linguistic Competence in the Diagnosis and Treatment of Depression. (2008). [Online continuing medical education activity].
  
  
• Also see the Maternal and Child Health Library's knowledge path, Racial and Ethnic Disparities in Health and its section about cultural and linguistic competence.
  

  
  

Early Intervention and Special Education

• Department of Education (ED): Disability Discrimination. Presents an overview of the laws involving disability discrimination in education and links to resources on the topic.
  
  
• 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 youth with special health care needs. Use the ERIC Thesaurus to inform your search by scanning the terms under the category Disabilities. ERIC is the information database of the Department of Education (ED).
  
  
• Family Center on Technology and Disability (FCTD). Presents resources for educators and families about assistive and instructional technologies. Includes resource reviews, fact sheets, an organizations database, an electronic newsletter, an online conference series, and Spanish-language materials. FCTD is sponsored by the Office of Special Education Programs (OSEP).
  
  
• LD Online. Contains articles, discussion groups, multimedia resources, and "ask the expert" opportunities for parents, educators, and other professionals about learning disabilities and attention deficit hyperactivity disorder. LD OnLine is a service of the Learning Project at WETA in Washington, DC.
  
  
• 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 early intervention, special education and related services, individualized education programs, 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). Recent resources include
  
  Building the Legacy: A Training Curriculum on IDEA 2004. (2007 & 2008). This collection of training modules is intended to assist in understanding and implementing the IDEA 2004 Part B regulations, and it includes PowerPoint presentations, discussion guides, supplemental resources, and handouts.
  
  Categories of Disability Under IDEA (rev. ed.). (2009). [Booklet].
  
  Developing Your Child’s IEP: A Parent's Guide (rev. ed.). (2009).
  
  
• 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-centered services, financing systems, inclusion and natural environments, personnel, early identification, interagency coordination, transition, and early childhood education policies and practices. Includes contact information for state agency staff responsible for implementing the early childhood provisions of IDEA and for Department of Education–funded early childhood projects. NECTAC is the national early childhood technical assistance center supported by the Department of Education (ED).
  
  
• 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 youth with disabilities receive quality education and related services through IDEA. View OSEP Ideas that Work for a wide range of research-based products, publications, and resources to assist states, educators, and families with improving results for students with disabilities. OSEP is part of the Department of Education (ED).
  
  
• Technical Assistance Alliance for Parent Centers (The Alliance). Gives 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 children and youth with disabilities to help them participate more effectively with professionals in meeting children's educational needs. The Alliance is supported by the Department of Education (ED) and administered by the Pacer Center (Parent Advocacy Coalition for Educational Rights).
  
  
• Also see AAP's Act Early on Developmental Concerns: Partnering with Early Intervention (2008), the HEATH Resource Center: Online Clearinghouse on Postsecondary Education for Individuals with Disabilities and the National Center on Secondary Education and Transition (NCSET).
  

  
  

Environmental Concerns

• Centers for Children's Environmental Health and Disease Prevention Research. Describes research investigating how environmental factors affect children's health. The centers are a joint initiative of the Environmental Protection Agency (EPA) and the National Institute of Environmental Health Sciences (NIEHS), with additional expertise and laboratory services provided by the Centers for Disease Control and Prevention (CDC).
  
  
• Centers for Disease Control and Prevention (CDC): National Center for Environmental Health (NCEH). Presents program information and resources, such as data, reports, fact sheets, and training tools, to prevent the adverse health effects of exposure to toxic substances and to combat the societal and environmental factors that increase the likelihood of exposure and disease. Includes information about NCEH's efforts to prevent birth defects and developmental disabilities resulting from nutritional deficiencies or exposure to environmental toxins in utero or during early childhood. Resources include
  
  National Environmental Public Health Tracking Network. Presents information and data that scientists, health professionals, and members of the public can use to track environmental exposures and chronic health conditions.
  
  
• Environmental Protection Agency (EPA): Children's Health Protection. Presents program information and resources about the vulnerability of children to environmental exposures that can lead to health problems, such as asthma, childhood cancer, and developmental disorders.
  
  
• National Children's Study. Contains information about this study to examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21. The goal of the study is to improve children's health and well-being and to improve the prevention and treatment of health problems such as autism, birth defects, diabetes, heart disease, and obesity. The study is led by a consortium of federal partners.
  
  
• TOXNET: (Toxicology Data Network). Presents a cluster of databases with bibliographic citations and data covering toxicology, hazardous chemicals, environmental health, and toxic releases. TOXNET is a service of the National Library of Medicine (NLM).
  
  
• Institute of Medicine (IOM), Forum on Neuroscience and Nervous System Disorders. 2008. Autism and the Environment: Challenges and Opportunities for Research. Workshop Proceedings. Washington, DC: National Academies Press. These proceedings provide information from a 2007 workshop examining the ways in which environmental factors such as chemicals, infectious agents, and physiological or psychological stress can affect brain development.
  
  
• Also see the Maternal and Child Health Library's resource brief, Environmental Health.
  

  
  

Financing Services

• Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs. Presents reports, issue briefs, data, and PowerPoint presentations for policymakers, program administrators, and health professionals about improving health insurance and financing for children and youth with special health care needs. Catalyst is a national center located at the Boston University School of Public Health and funded by the Maternal and Child Health Bureau (MCHB). Recent resources include
  
  Breaking the Link Between Special Health Care Needs and Financial Hardship. (2009). [Report].
  
  Health Care Reform and Children and Youth with Special Health Care Needs: Coverage Is Not Enough. (2009). [Issue brief].
  
  Mandated Benefits: Essential to Children and Youth with Special Health Care Needs. (2008). [Report].
  
  State-at-a-Glance Chartbook on Coverage and Financing for Children and Youth with Special Health Care Needs. Presents data on selected indicators of health coverage and health care financing for children and youth with special health care needs in every state plus Washington, DC and Puerto Rico.
  
  What Do Children with Special Health Care Needs Require from Health Care Reform? (2009). [Issue brief].
  
  
• Centers for Medicare and Medicaid Services (CMS). Contains program information, regulations and guidance, forms, data, and information about research and demonstration projects for policymakers, program administrators, and service providers. CMS provides health insurance for millions of Americans through Medicare, Medicaid, and CHIP.
  
  
• Kaiser Family Foundation: Medicaid/CHIP for People with Disabilities. Presents a wealth of resources about health care coverage via Medicaid and CHIP for children, adolescents, and adults with disabilities. The Kaiser Family Foundation is an independent philanthropy focusing on national health care issues. Recent publications include
  
  Helping Families with Needed Care: Medicaid’s Critical Role for Americans with Disabilities. (2008). [Testimony].
  
  
• Mathematica Policy Research: Children with Special Needs in Commercial Managed Care Plans. Presents a collection of data briefs about service use and costs of care for approximately 30,000 children with special health care needs who were enrolled in private managed care plans in 1999–2000. Mathematica, a nonpartisan research firm, conducts high-quality, objective policy research and surveys to improve public well-being.
  
  
• State Health Access Data Assistance Center (SHADAC). 2008. A Needed Lifeline: Chronically Ill Children and Public Health Insurance Coverage. Princeton, NJ: Robert Wood Johnson Foundation. This report presents a state-by-state analysis of children's access to health care services, especially children with chronic illnesses.
  
  
• Also see the Agency for Healthcare Research and Quality (AHRQ), the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule, and New England SERVE. See too the Maternal and Child Health Library's knowledge paths, Health Insurance and Access to Care for Children and Adolescents and Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid.
  

  
  

Foster Care

• National Center of Medical Home Initiatives for Children with Special Needs: Foster Care and the Medical Home. Briefly describes the problems with health care that children and youth in foster care often experience and the opportunities that the medical home approach presents to address these problems. Links to tools, program information, presentations, and Web sites for further information.
  
  
• First Focus. 2008. Addressing the Health Care Needs of Foster Care Children. Washington, DC: First Focus. This issue brief highlights several critical health concerns and policies impacting children and youth in the foster care system, many of whom have special health care needs.
  
  
• National Council On Disability (NCD). 2008. Youth with Disabilities in the Foster Care System: Barriers to Success and Proposed Policy Solutions. Washington, DC: National Council on Disability (NCD). This report describes the characteristics and challenges faced by youth with disabilities in foster care and covers topics that include safety, permanency, self-determination and self-sufficiency, quality of life, community integration, and how the complex array of existing programs and services could be better designed to improve outcomes for these youth.
  
  
• See the Maternal and Child Health Library's organizations resource list, Adoption and Foster Care, which includes several organizations focused on infants, children, and youth with special health care needs in the foster care system.
  

  
  

General Health, Wellness, and Safety Resources

Use these Web sites to identify resources about a wide range of health, wellness,and safety topics that are applicable to all children and youth, not just those with special health care needs.

• Centers for Disease Control and Prevention (CDC): Parent Portal. Presents a wealth of information for families about health and safety topics with sections about pregnancy, infants and toddlers, children, and adolescents.
  
  
• KidsHealth. Contains a wealth of doctor-approved information in English and Spanish for parents, children, and youth about health, emotions and behavior, growth and development, and positive parenting. 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 Center for Children's Health Media.
  
  
• MedlinePlus. Features links to information in English and Spanish on over 750 topics on conditions, diseases, and wellness. Also includes prescription and nonprescription drug information; a medical encyclopedia; a medical dictionary; health news; health directories; links to local resources for health-related issues in many states; and health information in over 40 languages. MedlinePlus is a service of the National Library of Medicine (NLM).
  
  
• Also see the healthy development resources of the American Academy of Pediatrics (AAP) and Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, 3rd ed. (2007).
  
  
• Also see the Maternal and Child Health Library's knowledge path, Social and Emotional Development in Children and Adolescents.
  

  
  

Genetics

• See the Maternal and Child Health Library's resource briefs, Genetics and Family Health History. Also see the section, Screening.
  

  
  

Hospice and Palliative Care

• Center to Advance Palliative Care (CAPC). Provides health professionals with tools and training for developing hospital palliative care programs, including pediatric palliative care. CAPC is a national initiative directed 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 youth living with life-threatening conditions. IPPC is an initiative of the Center for Applied Ethics (CAE), a division of the Education Development Center, Inc.
  
  
• National Hospice and Palliative Care Organization (NHPCO). Offers a national program directory, information about end-of-life care, and tools for quality assessment and performance improvement. 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.
  
  
• Visiting Nurses Association of America (VNAA). Offers a national directory and information about the services offered by home health and hospice care services. Includes tips on how to select a provider. VNAA is a national association of nonprofit visiting nurse agencies and home healthcare and hospice providers.
  

  
  

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, community-outreach program, camps for children with special health care needs, and current research programs. Also contains materials about financing, quality of care and patient safety, 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 national directory of nonprofit organizations that provide family-centered lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities.
  
  
• National Patient Travel Center. Provides information about charitable medical air transportation to specialized medical evaluation, diagnosis, or treatment.
  
  
• Shriners Hospitals for Children. Contains a hospital directory and eligibility and admission guidelines for this network of hospitals that provide no-cost care to children and youth up to age 18 with orthopaedic conditions, burns, spinal cord injuries, or cleft lip and palate.
  

  
  

Mental Health

• See the Maternal and Child Health Library's knowledge paths, Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents and Social and Emotional Development in Children and Adolescents.
  
  
• Also see the National Technical Assistance Center for Children's Mental Health.
  

  
  

Nutrition

• American Dietetic Association (ADA). Contains food and nutrition resources for health professionals and families. Important resources about children and youth with special health care needs 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).
  
  
• Pacific West MCH Distance Learning Network: Nutrition for Children with Special Health Care Needs. Presents a Web-based curriculum for registered dietitians and other health professionals who wish to learn more about working with children with special health care needs. Learning modules address growth assessment, dietary intake and determining individual needs, feeding skills, fluid and bowel problems, integrating community services and programs, and developing a family-centered plan.
  
  
• See the Maternal and Child Health Library's knowledge path, Nutrition in Children and Adolescents.
  

  
  

Oral Health

• See the Special Health Care Needs section of the Maternal and Child Health Library's knowledge path, Oral Health for Infants, Children, Adolescents, and Pregnant Women.
  

  
  

Rehabilitation

• ABLEDATA. Provides information about assistive technology (AT) products and rehabilitation equipment available from domestic and international sources. Includes fact sheets, papers, and resource guides on AT-related topics. ABLEDATA is sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR).
  
  
• assistivetech.net: National Public Website on Assistive Technology. Offers an online library of AT and disability-related resources that is browsable by function, activity, and vendor. Includes information about state AT programs, an AT Wiki, and a list of discussion groups about AT and disability. 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).
  
  
• National Rehabilitation Information Center (NARIC). Presents databases of information about literature, organizations, Web resources, and projects on rehabilitation-, disability-, and AT-related topics. NARIC is funded by the National Institute on Disability and Rehabilitation Research (NIDRR). Resources include
  
  NARIC Knowledgebase. Presents information about organizations, facilities, agencies, journals, magazines, newsletters, and Internet resources focusing on disability and rehabilitation.
  
  NIDRR Program Directory. Presents contact information and descriptions for NIDRR-funded disability and rehabilitation research projects.
  
  NIDRR Tools Collection. Includes information about checklists, survey instruments, assessment scales, questionnaires, evaluative software, and interview schedules designed for disability and rehabilitation research.
  
  REHABDATA. Describes over 70,000 books, reports, articles, and audiovisual materials about disability and rehabilitation research.
  
  
• Pass It On Center: National AT Reuse Center. Presents contact information for organizations that facilitate used AT product exchange. Pass It On Center is part of the Georgia Assistive Technology Project.
  
  
• Rehabilitation Services Administration (RSA). Offers 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 part of the Department of Education. Resources include
  
  Promising Practices for Basic VR [Vocational Rehabilitation] Agencies Helping Transition Age Youth. (2007). [Program summaries].
  
  
• Tots 'n Tech Research Institute (TnT). Offers research information about the use of AT to enhance the development of infants and young children 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.
  
  
• Also see the Family Center on Technology and Disability (FCTD).
  

  
  

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).
  
  
• Centers for Disease Control and Prevention (CDC): National Center on Birth Defects and Developmental Disabilities (NCBDDD): Screening. Offers background information, tools, and recommendations for newborn screening, hearing screening, and developmental screening. Initiatives include
  
  Early Hearing Detection and Intervention (EHDI) Program. Offers program information, educational materials in English and Spanish, teleconferences and transcripts, and guidelines about about infant hearing loss and hearing screening.
  
  Learn the Signs. Act Early. Provides fact sheets in English and Spanish on developmental milestones for infants and children from birth to age 5 that include a list of signs that could indicate a developmental disability such as autism. View the online video, Baby Steps: Learn the Signs. Act Early (2008).
  
  
• First Signs. Offers information for health professionals, educators, and families about the importance of early detection of and intervention for developmental, behavioral, and learning disabilities. Lists key social, emotional, and communication milestones for infants and young children (birth to age 3), and describes critical warning signs indicating that an infant or child is at risk for developmental delays and disabilities. Includes information about the First Signs training programs in several states. First Signs is a national, nonprofit organization that aims to improve screening and referral practices and to lower the age at which young children are identified with developmental, behavioral, and learning disabilities.
  
  
• 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 young children 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.
  
  
• Drotar D, Stancin T, Dworkin P. 2008. Pediatric Developmental Screening: Understanding and Selecting Screening Instruments. New York, NY: The Commonwealth Fund. This Web-based manual helps health professionals choose and apply the structured screening method that is most appropriate for their practice setting. The manual is based on an extensive review of scientific research on available developmental screening instruments.
  
  
• Mayer R, Anastasi J, Clark EM. 2006. What to Expect and When to Seek Help: Bright Futures Developmental Tools for Families and Providers. Washington, DC: National Technical Assistance Center for Children's Mental Health, Georgetown University Center for Child and Human Development, with National Center for Education in Maternal and Child Health. This packet includes four tools that offer a framework for health professionals and families to begin a conversation together about how best to support healthy social and emotional development in infants, children, and adolescents and encourage families who have concerns about their child to ask questions and to seek help. A companion referral tool helps professionals identify resources in their own communities.
  
  
• Sices L. 2007. Developmental Screening in Primary Care: The Effectiveness of Current Practice and Recommendations for Improvement. New York, NY: The Commonwealth Fund. This report makes several recommendations to strengthen developmental surveillance and screening, and thereby improve outcomes for young children and families.
  
  
• The Maternal and Child Health Library's knowledge path, Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid, 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) child developmental screening and (2) newborn screening.
  
  
• Also see the Medical Home Portal and MCHB's Long-Term Follow-Up After Diagnosis Resulting From Newborn Screening (2008). Also see the section, Early Intervention and Special Education, for resources about early identification and intervention. See too the Maternal and Child Health Library's resource brief, Genetics, for newborn screening resources.
  

  
  

Sports, Recreation, and the Arts

• 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 disability.
  
  
• National Center on Accessibility (NCA). Presents a webinar series, technical reports, educational materials, articles, 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 and disability. Includes fact sheets about activities, games, camps, 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.
  
  
• Special Olympics. Contains program and event information for year-round sports training and athletic competitions for children, adolescents, and adults with intellectual disabilities. Includes sports rules, program guides, coaching guides, articles, and a program locator. Also describes its 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. Special Olympics serves more than 2.5 million individuals with intellectual disabilities in more than 180 countries.
  
  
• VSA arts. Contains information about this national arts-based program in creative writing, dance, drama, music, and the visual arts for people with disabilities to increase disability awareness, encourage expression, improve learning, and grow self-esteem. Resources include publications, guides, and tools for educators, parents, and artists to support arts programming in schools and communities; an artists registry, a database of educational research about the arts and people with disabilities; and links to online interactive exhibits and other Web sites. VSA arts is an affiliate of the John F. Kennedy Center for the Performing Arts. Each year millions of people participate in VSA arts programs through a nationwide network of affiliates and in more than 60 countries around the world.
  

  
  

Transition

Includes resources about health care, education, employment, and independent living for youth with special health care needs who are transitioning to adult services.

• Department of Housing and Urban Development (HUD): People with Disabilities. Offers information in English and Spanish for people with disabilities about renting, buying, and making a home accessible, and about fair housing rights.
  
  
• Health Care Transitions. Offers program information, training materials, and other resources for families and professionals about transitioning from pediatric to adult-oriented health care for youth with special health care needs. Health Care Transitions is a project of the Institute for Child Health Policy (ICHP). Recent resources include
  
  Now That You're In High School: A Health Care Transition Guide for Teens in High School. (2008).
  
  Talking with Your Doctor. (2008). This online video teaches youth how to communicate more effectively with their health professionals.
  
  This Is Health Care Transition. (2007). This online video helps youth and young adults with chronic health conditions and their families prepare for the move from pediatric to adult-oriented health care.
  
  
• Healthy and Ready to Work National Resource Center (HRTW). Presents annotated links to a wealth of resources to inform and guide efforts to build a system of care that will ensure successful transitions for youth with special health care needs to the activities and concerns of adult life. Resources include a conference call series and archive, PowerPoint presentations, tools and checklists, and youth-involvement materials. HRTW is headquartered at the Maine State Title V Program. Recent publications include
  
  Title V MCH 5-Year Needs Assessment & Transition: A Primer for CYSHCN Programs (rev. ed.). (2008). [Issue brief].
  
  Transition for Youth with Special Health Care Needs: How Do We Get This Done? (rev. ed.). (2009). [Issue brief].
  
  
• Healthy Transitions. Presents tools in English and Spanish for youth with developmental disabilities, families, and health professionals to develop skills for transitioning from pediatric to adult health care. Resources cover scheduling an appointment, getting health insurance, deciding about guardianship, speaking up at a doctor's office, understanding my disability, managing medications, keeping a health summary, looking into service coordination, setting health goals, and finding community resources. Healthy Transitions is a service of the New York State Institute for Health Transition Training.
  
  
• HEATH Resource Center: Online Clearinghouse on Postsecondary Education for Individuals with Disabilities. Presents an online clearinghouse for individuals with disabilities about educational support services, policies, procedures, adaptations, and opportunities in college or university campuses, career-technical schools, or other postsecondary programs. Resources include online training modules, resource lists, a toolkit, and papers. HEATH is part of the George Washington University Graduate School of Education and Human Development.
  
  
• National Center on Secondary Education and Transition (NCSET). Offers a wealth of resources about secondary education and transition issues for youth with special health care needs. Includes issue briefs, resource compilations, and an electronic newsletter for school and transition professionals and health professionals, parent guides, and tools for youth. Topics cover academic standards, accommodations, adolescent literacy, assessment, dropout, graduation, instructional strategies, professional development, student learning strategies, universal design for learning, and work-based learning. NCSET is headquartered in the Institute on Community Integration at the University of Minnesota.
  
  
• National Collaborative on Workforce and Disability for Youth (NCWD/Youth). Offers program information, issue briefs, white papers, guides, training materials, and other resources about employment and youth with disabilities. NCWD/Youth is based at the Institute for Educational Leadership. Resources include
  
  Innovative Strategies. Presents an online database of promising programs and practices in the work force development system that effectively address the needs of youth with disabilities.
  
  
• National Council on Independent Living (NCIL). Presents legislative news, training and conference information, and links to directories of state centers for independent living. NCIL advocates for independent living and the rights of people with disabilities.
  
  
• National Secondary Transition Technical Assistance Center (NSTTAC). Presents evidence-based practices, a guide to transition assessment, and many other resources to help states improve transition planning, services, and outcomes for youth with disabilities. NSTTAC is located in the Special Education Program at the University of North Carolina at Charlotte, in partnership with Western Michigan University and Appalachian State University.
  
  
• NEXT STEPS Transition Program. Presents a webinar series about transition for parents, students with disabilities, and the professionals who work with them. Next Steps is a product of the Parent Educational Advocacy Training Center (PEATC) in collaboration with Virginia Commonwealth University Rehabilitative Research Training Center.
  
  
• Social Security Online: The Work Site. Contains employment resources for individuals with disabilities and their families, employers, health and social services professionals, and advocates.
  
  
• Technical Assistance on Transition and the Rehabilitation Act (TATRA). Includes parent training project information and resources to help families prepare youth with disabilities for employment and independent living. Topics include transition planning, the adult service system, and strategies that prepare youth for successful employment, postsecondary education, and independent living outcomes. TATRA is a part of the Pacer Center (Parent Advocacy Coalition for Educational Rights).
  
  
• Transition Coalition. Offers resources for professionals and families about the transition from school to adult life for youth with special health care needs. Includes online training modules and materials, descriptions and contact information for models of success, a database of transition tips, and transition-planning guides and workbooks for students and families. The coalition is located at the University of Kansas Department of Special Education.
  
  
• Williams B, Tolbert J. 2007. Aging Out of EPSDT: Issues for Young Adults with Disabilities. Washington, DC: Kaiser Commission on Medicaid and the Uninsured. This issue brief discusses the challenges and implications for young adults with disabilities when they lose their eligibility for EPSDT program benefits.
  
  
• Also see the Rehabilitation Services Administration (RSA).
  

  
  

Universal Design

• Center for Universal Design. Contains program information and resources about accessible and universal design in housing, commercial and public facilities, outdoor environments, and products. The Center for Universal Design is a national information, technical assistance, and research center located at North Carolina State University College of Design.
  
  
• United States Access Board. Presents accessible design criteria for the built environment, transit vehicles, telecommunications equipment, and electronic and information technology. The Access Board is an independent federal agency devoted to accessibility for people with disabilities.
  
  
• Also see the National Center on Accessibility (NCA).
  

  
  

Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health Library.
Reviewers: Lauren Agoratus, M.A., parent of a child with special needs, Family Voices and Family-to-Family Health Information Resource Center at the Statewide Parent Advocacy Network of N.J.; Cheryl Murphy, Depression and Bipolar Support Alliance of Southern Nevada; Olivia K. Pickett, M.A., M.L.S., Maternal and Child Health Library; Suzanne Ripley, parent of children with special needs, National Dissemination Center for Children with Disabilities (NICHCY); Brad Thompson, M.A., parent of a child with special needs, HALI Project and Family Voices; Jacqueline Washington, Mississippi State Department of Health.