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.
  
  
• National Toll-free Numbers and Web Sites. Lists toll-free telephone numbers and Web sites for national organizations concerned with children and adolescents with special health care needs. This extensive list is organized by topic and maintained by the National Dissemination Center for Children with Disabilities (NICHCY).
  

  
  
  

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 study plan released in 2004 outlines the objectives, methodologies, and measures related to the first years of the 21-year study and identifies the 96 study locations across the United States. 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. Also offers Zigawhat!, a resource for children and adolescents with special health care needs and a list of toll-free telephone numbers for national disability-related organizations. NICHCY is funded by the Department of Education (ED). A sampling of recent publications include

  Attention-Deficit/Hyperactivity Disorder (AD/HD). (2004). This is one of numerous fact sheets and briefing papers that focus on specific disabilities. Each defines the disability, describes its characteristics, offers tips for parents and teachers, and lists additional resources.

  eNews Foundations. These guides are designed to introduce basic resources in various interest areas such as early intervention. Users are invited to sign up for an electronic news service in each interest area that alerts readers to new resources and builds a knowledge base of the central resources described in each guide.

  Finding help for young children with disabilities (birth-5), rev. ed. (2005).

• 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, the National Dissemination Center for Children with Disabilities (NICHCY), and the National Organization for Rare Disorders (NORD).

• Connect with Other Kids. Lists online discussion groups for children and adolescents with special health care needs that includes groups for those with specific chronic illnesses and disabilities and those for siblings of children and adolescents with special needs. This service is provided by the National Dissemination Center for Children with Disabilities (NICHCY).
  
  
• 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. Includes a collection of links to data sources for tracking adolescents transitioning to adulthood. 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).
  

  
  
  

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 tip