Annotation: The mission of Adaptive Environments Center is to promote, facilitate, and advocate for the design of environments in all settings that will allow every individual to participate in community life. This is done through educational programs, technical assistance, and publications. The center maintains a listserv and publishes a newsletter (with limited circulation to New England residents). The center also sponsors conferences and training seminars.

Keywords: Special health care needs;

Annotation: The Adolescent Employment Readiness Center (AERC) is a national program that helps adolescents with chronic illnesses or physical disabilities to obtain the skills required for successful employment. The center advocates early vocational guidance and education as a means of improving workforce readiness and employability among adolescents with chronic illnesses or disabilities. Services provided include referrals, publications, and reference information. Some materials are available in Spanish. An interpreter service is also available. AERC publishes a newsletter and sponsors conferences, workshops, and training programs.

Keywords: Youth; Employment services; Vocational education; Disabilities; Adolescents; Chronic illnesses and disabilities; Information services;

Annotation: The Advocacy Center for Persons with Disabilities, formerly the Governor's Commission on Advocacy, is a federally funded nonprofit corporation working to advance the dignity, equality, self-determination, and expressed choices of individuals with disabilities. The Center promotes, expands, protects, and seeks to assure the human and legal rights of the people through the provision of information and advocacy. The center administers five federally mandated programs: the Protection and Advocacy System for Persons with Developmental Disabilities, the Client Assistant Program, the Protection and Advocacy System for Individuals with Mental Illness, the Protection and Advocacy for Individual Rights, and the Technology Assistance Program. Services to consumers include advocacy and information. The center publishes a newsletter, sponsors training seminars, and provides materials in Spanish.

Keywords: Disabilities; Advocacy; Special health care needs;

Annotation: The American Association of People with Disabilities was formed as an umbrella organization to provide an effective means of bringing people with disabilities together to leverage their power. The specific purposes for which the AAPD was formed include the following: to further the productivity, independence, full citizenship and total integration of people with disabilities into all aspects of society; to foster leadership among people with disabilities; to support full implementation and enforcement of disability non-discrimination laws; to conduct programs to enhance the lives of people with disabilities, including programs to reduce poverty and unemployment; assure adequate housing and access to and funding for assistive technology; to provide critical benefits and services to people with disabilities such as life, health and disability insurance; and to educate the public and government policymakers regarding issues affecting people with disabilities. Services provided to consumers include referrals, publications and reference information. AAPD publishes a quarterly newsletter, AAPD News.

Keywords: Special health care needs; Adults;

Annotation: The American Association on Health and Disability contributes to national, state, and local efforts to prevent additional health complications in people with disabilities, and identifies effective intervention strategies to reduce the incidence of secondary conditions and the health disparities between people with disabilities and the general population. AAHD accomplishes its mission through research, professional and public education, advocacy efforts, and expansion of public awareness on issues related to the prevention of impairments and disabilities. AAHD's Best Practices Web page contains program descriptions on bowel and/or bladder dysfunction, emergency preparedness, oral health, training health professionals, and youth mentoring.

Keywords: Disabilities; Access to health care; Prevention services; Intervention; Research; Education; Advocacy; Information dissemination;

Annotation: The Americans with Disabilities Act (ADA), signed into law in 1990, prohibits discrimination against qualified applicants or employees on the basis of their disability. It also requires most public accommodations, buildings, and transportation systems to be accessible to persons with disabilities. For information on legislation, legal rights, and resources, call: (800) 949-4232. Callers are referred to the regional office for their state which provides information and technical assistance to employers and to persons with disabilities to facilitate the appropriate implementation of the ADA, successful employment outcomes for individuals with disabilities, and greater accessibility in public accommodations.

Keywords: Federal legislation; Children with special health care needs; Disabilities; Technical assistance; Accessible facilities;

Annotation: The ARCH National Respite Network (ARCH NRN) assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services in their communities; and serves as a strong voice for respite in all forums. Publications include fact sheets, manuals, guidebooks, training guidebooks, and survey reports. The National Respite Locator Service assists parents, caregivers and professionals in locating services in their state and local area and the National Respite Coalition advocates for preserving and promoting respite in policy and programs at the national, state, and local levels. The network also maintains a list service. It is supported by foundations and memberships.

Keywords: Respite care; Children with special health care needs;

Annotation: The Association for Persons with Severe Handicaps (TASH) promotes human dignity, education, and independence for people with developmental disabilities. Members include parents, administrators, teachers, medical and legal personnel, researchers, speech pathologists, occupational and physical therapists, and people with disabilities. The association provides information referrals and publications; publishes a monthly newsletter and quarterly scholarly journal; and holds regional workshops, training seminars, and an annual conference. A catalog is also published.

Keywords: Developmental disabilities; Special education; Integration; Handicapping conditions; Disabilities; Advocacy; Special health care needs; Information services;

Annotation: The Beach Center on Disability is a research and training center that focuses on families of people with disabilities. The center is funded in part by the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, U.S. Department of Education, and by private endowments. Services to consumers include referrals, publications, and reference information. The center publishes a catalog and newsletter and sponsors conferences and training seminars. Some materials are available in Spanish and Asian languages. The center's Web site provides lists of groups and organizations in each state.

Keywords: Family support; Developmental disabilities; Technology dependence; Children; Family resource centers;

Annotation: Birth Defect Research for Children (BDRC), formerly the Association of Birth Defect Children (ABDC), disseminates information on birth defects, especially those that may be caused by environmental substances such as drugs, pesticides and other chemicals, and radiation. It also provides referrals and helps people with birth defects to cope with problems associated with physical malformation. The 501 (c) (3) organization sponsors a national parent matching program that links families of children with similar birth defects, and in 1993 it established a National Birth Defect Registry that collects information on birth defects, learning disabilities, cancers, and other childhood disabilities that may be related to environmental exposure of either parent during or before pregnancy. Publications include fact sheets on the most common categories of birth defects as well as environmental toxins that have been linked to birth defects.  A free monthly newsletter is sent out electronically.  Parents may subscribe on the BDRC web site.

Keywords: Congenital abnormalities; Environmental exposures; Information services; Family support services;

Annotation: The Center on Human Policy is an advocacy and research organization that promotes the rights of people with disabilities to be fully included in community life. The Center provides parents, consumers, and professionals with information on costs of local services and resources for parents of children with disabilities, deinstitutionalization research, and other related issues. Through its funded projects, the Center provides referrals, reference information, and publications, including a resource catalog. Some materials are available in Spanish and French. The Center also sponsors conferences, training seminars, and workshops.

Keywords: Public policies; Special health care needs; Inclusion

Annotation: Champions for Inclusive Communities (ChampionsInC) is a national center designed to support communities in organizing services for families of children and youth with special health care needs (CYSHCN). It is funded by the US Maternal and Child Health Bureau to (1) identify and work with major national public and private community development initiatives, (2) facilitate linkages between community development initiatives and State programs; (3) develop and maintain a Web site linked to relevant community development initiatives; (4) develop and disseminate materials on inclusion of CYSHCN; (5) develop and implement a community recognition program; and (6) collect, analyze, expand and apply evidence-based data to integrating community systems.

Keywords: Children with special health care needs; Family support services; Community based services; CSHN programs; MCH services; Resource centers;

Annotation: Child Care Plus is a federally funded project that provides technical assistance, written materials, and training for families, child care providers and others who support inclusion of young children with disabilities in early childhood programs. Services to consumers include referrals, publications, and reference information. The organization publishes a catalog and newsletter and sponsors training seminars and workshops.

Keywords: Children with special health care needs; Child care;

Annotation: The Children's Hopes and Dreams Foundation is a nonprofit foundation that serves children with chronic and life threatening illnesses. The foundation fulfills last dreams, matches special pen-pal friends, and sends Kids Kare packages. Hospitals, hospices, clinics, serious illness camps, Ronald McDonald Houses and Dream/Wish Groups in over 22 countries participate in the program. Publications include a quarterly newsletter for donors.

Keywords: Children; ,Adolescents; Chronic illnesses and disabilities; Pen pals;

Annotation: The Division of Disability Concerns of the Christian Reformed Church seeks to promote the full participation of people with disabilities in the life of the church. The division encourages support groups and respite care, and it works with Christian service providers, support organizations, and local and national religious and professional organizations to provide referrals, information, education, and encouragement to church leaders and members of the congregation. Publications include a newsletter, Breaking Barriers. Some conferences and training seminars are offered.

Keywords: Mental retardation; Clergy; Disabilities; Religious organizations; Inclusion

Annotation: Communities Can is a network of communities committed to ensuring comprehensive systems of services and support for children, especially children with special health care needs, and their families. Communities Can is designed to network communities to share information, skills and experiences in systems building; provide materials and resources on systems development; provide communities with a voice in national policy discussions; and recognize the achievements of communities in building successful systems for children and families. The network is funded in part by the Maternal and Child Health Bureau, Health Resources and Services Administration, and the Center for Mental Health Services, and coordinated by Georgetown University Center for Child and Human Development. The organization publishes a newsletter and sponsors training seminars.

Keywords: Children with special health care needs; Community programs; Family centered services;

Annotation: The Coordinating Center for Home and Community Care (CCHCC) is a nonprofit organization that provides care management services for people with complex medical needs, special health care needs, and disabilities who are living in their own homes and communities. The Coordinating Center also provides technical assistance, training, and consultation to professionals who work in the community with people who have such needs. Services to consumers include referrals, reference information, and publications. The center publishes a catalog and a variety of brochures. Some materials are available in Spanish.

Keywords: Home care; Chronic illnesses and disabilities; Technical assistance; Case management; Refferals; Home care services;

Annotation: The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational success for individuals with exceptionalities - students with disabilities and/or gifts. CEC advocates for appropriate governmental policies; sets professional standards; provides continual professional development; advocates for newly and historically underserved individuals with exceptionalities; and helps professionals obtain conditions and resources necessary for effective professional practice. Services provided include the following: information dissemination, public policy advocacy and information; conventions and conferences; special education publications; and standards for the preparation and certification of special educators and professional practice. Please note: consumers are asked not to direct inquiries to both CEC and the ERIC Clearinghouse on Disabilities and Gifted Education, since the two organizations share staff and resources in responding to questions on disabilities.

Keywords: Special education programs; Educational factors; Children with special health care needs; Educational programs, Professional societies

Annotation: The Council of State Administrators of Vocational Rehabilitation (CSAVR) is composed of the chief administrators of all public rehabilitation agencies serving people with physical and mental disabilities in the states, the District of Columbia, and the U.S. territories. These agencies are partners in the state/federal program of rehabilitation services provided under the Rehabilitation Act of 1973, as amended. The council provides a forum for administrators of state rehabilitation agencies to study and discuss issues of interest, and it serves as an advisory board for the National Rehabilitation Council and for the Rehabilitation Services Administration of the U.S. Department of Education.

Keywords: Vocational rehabilitation;

Annotation: The Council on Quality and Leadership (CQL), believes in a world of dignity, opportunity and community inclusion for all people, including those with disabilities, mental illness, and the individuals, organizations, and communities who support them. Through its services, publications, and public presence, CQL works to establish real connections between disabilities’ theory and practice and help the disability community take the important step from innovative ideas to everyday action. Publications include Quality Measures 2005, Personal Outcome Measures, Personal Outcome Measures for Children and Youth, and Personal Outcome Measures for Families with Young children.

Keywords: Hospitalization; Children; Alternative medicine; Accreditation; Developmental disabilities; Disabilities; Advocacy; Quality Enhancement Certificate Program; Special health care needs;

Annotation: Disability Rights Education and Defense Fund is a nonprofit organization run primarily by persons with disabilities to achieve the goals of the disability rights movement. It monitors legislative and educational efforts and conducts training and research programs. The organization trains persons with disabilities and their families in the application of their rights under laws such as the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA), and Section 504 of the Rehabilitation Act of 1973. It offers information on the civil rights of persons with disabilities to attorneys, federal agencies, and legislators and their staffs, and provides referrals and publications for consumers. The Disability Rights Education and Defense Fund News the organization's free quarterly newsletter, reports on legislative and judicial activities affecting disability rights. Some materials are available in Spanish.

Keywords: Disabilities; Civil rights; Training; Research; Individuals with Disabilities Education Act; IDEA;

Annotation: The Disability Statistics Center is a program funded by the National Institute on Disability and Rehabilitation Research to train individuals and develop statistical information on disability in the United States. It provides statistical information on a wide variety of topics concerning disability in the United States, and responds to questions using a library of books, reports, research papers, and technical information on surveys and databases. The center produces a catalog and a journal, provides publications and reference information for consumers, and sponsors conferences.

Keywords: Disabilities; Chronic illnesses and disabilities; Statistics;

Annotation: Disabled and Alone/Life Services for the Handicapped is a national nonprofit organization that works to ensure the well-being of people with disabilities after their parents die. Disabled and Alone helps parents of a handicapped child plan for when they will no longer be around; provides an alternative service program if other financial arrangements can not be made; advises parents, relatives, attorneys, and financial planners about planning for a handicapped individual; and provides advocacy and oversight for handicapped individuals whose families have left funds for their care. Local nonprofit direct service organizations are enlisted as partners in this endeavor. Services offered to consumers include referrals, publications, and reference information. The organization publishes a newsletter and sponsors conferences, workshops, and training seminars.

Keywords: Estate planning; Financial planning; Children with special health care needs; Health care financing; Disabilities; Financial support; Counseling; Information services;

Annotation: Easter Seals provides services at 450 locations for individuals and families with disabilities and special needs. Major services include medical rehabilitation, job training and employment, inclusive child care, camping and recreation and adult day services. The organization produces an electronic newsletter and provides referrals and publications for consumers.

Keywords: Rehabilitation; Developmental disabilities; Advocacy;

Annotation: The Family Resource Center on Disabilities (FRCD), formerly the Coordinating Council for Handicapped Children, was organized to improve services for all children with disabilities. Services to consumers include referrals, reference information, and publications. FRCD sponsors conferences and conducts free weekly training community workshops on the rights of children with disabilities to special education. Model programs include the Parent-to-Parent Training Project, which prepares parent group leaders to be effective trainers in their own communities. Publications include a monthly newsletter, brochures, fact sheets, and the manuals How to Organize an Effective Parent/Advocacy Group and Move Bureaucracies and How to Get Services by Being Assertive. A publications list is available. Some materials are available in Spanish. Resources focus primarily on Chicago and Illinois.

Keywords: Disabilities; Children with special health care needs; Advocacy; Special education; Family support; Health services; Illinois;

Annotation: Family Voices is a national grassroots organization speaking on behalf of children with special health care needs. The organization works with local, state, and national policy makers, the media, health care and educational professionals in collaborative efforts to meet the needs of these children. Services to consumers include reference information and publications. Publications include a bimonthly newsletter. Materials are also available in Spanish. Their Web site provides access to state Family Voices groups, including family to family health information centers, and to other resources within each state.

Keywords: Parent groups; Health policy; Children with special health care needs; Advocacy; Consumer education; Public awareness campaigns; State children's health insurance program; Medicaid; Health insurance; State programs; Legislation; Publications; Spanish language materials; Family resource centers; Community programs;

Annotation: The National Fathers Network advocates for fathers of children with special health needs through support and mentoring programs, conferences and training seminars, a newsletter, a Web page, development of curriculum, and ongoing work with professionals to enhance service delivery for all family members. Services to consumers include referrals, publications, and reference information. Some materials are available in Spanish.

Keywords: Children with special health care needs; Fathers; Parenting; Family centered services; Referrals; Special education; Information sources; Consumer education; Public awareness materials; Publications; Spanish language materials;

Annotation: The Federel Resource Center for Special Education (FRC) is a cooperative agreement between the Academy for Educational Development (AED), its partner, the National Association of State Directors of Special Education (NASDSE), and the U.S. Department of Education, Office of Special Education Programs. The FRC supports a nationwide technical assistance network to respond to the needs of students with disabilities, especially students from under-represented populations. Through its work with the Regional Resource Centers and the technical assistance networks, the FRC provides a national perspective for establishing technical assistance activities within and across regions by identifying and synthesizing emerging issues and trends. In addition, the FRC works with the Office of Special Education Programs (OSEP) to plan national conferences of education professionals, with the object of communicating OSEP priorities and promoting positive systemic change in special education programs across the nation.

Keywords: Resource centers; Children with special health care needs; Special education; Technical assistance; Disabilities;

Annotation: The Federation for Children with Special Needs (FCSN) is a nonprofit organization that provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.

Keywords: Parent professional relations; Family support; Agent Orange; Parent education; Advocacy; Young children; Children with special health care needs; Information services;

Annotation: Friends' Health Connection (FHC) is a nonprofit organization offering a customized support service for individuals and family members struggling with health-related problems. FHC connects individuals who have the same health problems on a one-to-one basis. Participants are matched based upon a number of criteria, including age, illness or disability, personal background, symptoms, etc. Once connected, participants can communicate via letters, e-mail, the telephone, video and cassette tapes, and/or face-to-face meetings. The organization also publishes a newsletter.

Keywords: Special health care needs;

Annotation: The Genetic and Rare Diseases Information Center (GARD) -- established by the National Human Genome Research Institute (NHGRI) and the National Institutes of Health Office of Rare Diseases (ORD) -- provides free access to reliable information about genetic and rare disorders (including specific conditions and illnesses) in both English and Spanish and responds to inquiries from patients and families, health professionals, and other interested parties.

Keywords: Genetic disorders; Genetics; Rare diseases; Special health needs; Information services;

Annotation: The Helen A. Kellar Institute for Human disAbilities, a part of the College of Education and Human Development at George Mason University, is an interdisciplinary campus-based organization that focuses on externally-funded activities related to improving the lives and productivity of persons with disabilities. The institute engages in projects including: policy analysis for local, state, and national needs; research and development; model program development and implementation, training (graduate and undergraduate) and technical assistance to professionals and parents. Major areas of emphasis include assistive and instructional technology, distance education, transition and post-secondary education, and severe disabilities. Services to consumers include referrals, publications and reference information. Some materials are available in Spanish. The center also publishes a newsletter and sponsors conferences, training seminars, and workshops.

Keywords: Disabilities; Policy analysis; Research; Technical assistance;

Annotation: The International Association for Disability and Oral Health (IADH) serves as a focus for national academies, societies, federations, and associations as well as individuals striving to improve access to, and the quality of, oral health for people with disabilities. IADH publishes a newsletter.

Keywords: Oral health; Disabilities; Access to health care;

Annotation: The International Patient Advocacy Association (IPAA) has as its major program the Gaucher Network, which matches callers with contacts in the United States and nine other nations who can help address the medical, emotional and social issues surrounding Gaucher Disease. Specific resources available through the Gaucher Network include: (1) pro bono legal advice and consultation; (2) free meeting space at 27 locations in the USA; and (3) a forum for becoming involved in health reform programs and public hearings on behalf of people with Gaucher disease.

Keywords: Gaucher disease; Special health care needs;

Annotation: Jewish Children's Adoption Network works to find Jewish adoptive homes for Jewish children, primarily those with special needs. No-fee services include helping a birth family parent a child, locating resources for help with personal problems or coping with a child's limitations, helping an adoptive family find resources for adoption or parenting, helping families negotiate adoption subsidies, and helping biological and adoptive triad members in getting a search started. Services to consumers include referrals, publications, and reference information. Oral information can be provided in Hebrew or Yiddish. JCAN publishes a newsletter and sponsors training seminars.

Keywords: Adoption; Children with special health care needs;

Annotation: The Kennedy Krieger Institute's Training Products Division is a cooperative of diverse individuals and programs whose goal is to develop, disseminate, and provide training, publications, and consultation to assist individuals with disabilities, their families, and service providers. The activities of the division promote inclusion and independence of individuals with disabilities and encourage service delivery practices that are community-based, coordinated, culturally competent, and family-centered. The division also offers specialized products, technical assistance, and training based on a broad range of topics related to individuals with disabilities, from birth through adulthood. Publications include: Delivering Family-Centered, Home-Based Services, Building Parent/Professional Collaboration, and The Rights of Individuals with Developmental Disabilities. The center publishes a catalog.

Keywords: Disabilities; Family centered services; Technical assistance; Training;

Annotation: Kids as Self Advocates (KASA), a project of Family Voices co-sponsored by the Diana, Princess of Wales Memorial Fund and the U.S. Maternal and Child Health Bureau (MCHB), is a national network made up of adolescents with special health care needs and their families and friends. KASA's mission is to educate society about issues concerning youth with disabilities and special health care needs and works to empower youth to learn how to self-advocate. KASA also assists with building support networks for youth with special needs to share information with their peers. Members of KASA serve as youth advisors to Family Voices and work to educate policymakers, medical students, physicians, and fellow students on issues such as living with special health care needs, health care transition, education, and employment. The organization publishes a newsletter, sponsors a listservice and an electronic bulletin board and offers payment to youth for Web site contributions. KASA also operates the KASA National Youth Information, Training, and Resource Center with funding from the Administration on Developmental Disabilities.

Keywords: Adolescents with special health care needs; Adolescents with developmental disabilities; Advocacy; Peer education; Peer support programs; Listservs;

Annotation: Kids on the Block offers puppet programs designed to help children learn to interact and work together. Programs cover more than 40 topics related to disabilities and mainstreaming, educational differences, medical differences, and social concerns. Program materials include a teacher/user manual, audiotapes, props, a coordinator's manual, and educational materials. Also available are puppeteer training workshops, performances by the national company, and a videotape. The organization also publishes a newsletter.

Keywords: Developmental disabilities; Psychosocial factors; Special education; Mainstreaming; Children; Educational materials; Audiovisual materials;

Annotation: Lifeline Pilots is an volunteer organization of private pilots. Pilots, at their own expense, facilitate free air transportation for patients in financial need who require treatment at locations that are far away from their homes. Second and third priority missions include transporting children with disabilities to special camps, parents to visit children undergoing long-term hospitalization in another city, transporting child with disabilities to an adoptive parent, flying persons to identify remains of family members, returning terminally ill patients home, carrying elderly persons to nursing homes, or assisting in disaster relief operations. Lifeline Pilots is not an air ambulance. The organization also publishes a newsletter and provides speakers for engagements.

Keywords: Chronic illnesses and disabilities; Transportation of patients;

Annotation: The mission of Lifetime Advocacy Plus to enhance the lives and protect the rights of people with disabilities, by providing guardianship, personal attention, advocacy, trust and financial management, and personal services.

Keywords: Special health care needs; Adults;

Annotation: The MAGIC(Major Aspects of Growth in Children)Foundation is a national nonprofit organization serving children and adults with critical and or chronic illnesses affecting their growth, including Precious Puberty, Congenital Adrenal Hyperplasia, Septo Optic Dysplasia, Adult Growth Hormone Deficiency, McCune Albright syndrome, Truner syndrome, Genital and Reproductive Anomalies, Hypophosphatasia, Panphypopituitarism, Congenital Hypothyroidism, Growth Hormone Deficiency, Russell-Silver Syndrome and many other Rare Disorders. Incorporated within MAGIC are families, children, and medical professionals in various fields of children's health. Services available through the foundation include support groups, referrals, a financial assistance fund, a birthday club for kids, kid's pen pal program, community outreach programs, family networking, quarterly newsletters, kids' newsletters, and a toll free parent help line (1-800-3 MAGIC 3). Services to consumers include referrals and publications. Educational brochures available include: Congenital Hypothyroidism, Intrauterine Growth Retardation, Hypophosphatasia, Underlying Conditions of Growth Abnormalities, Growth Hormone Deficiency ,The Most Frequently Asked Questions When Beginning Growth Hormone Therapy, Constitutional Growth Delay, Precocious Puberty, Turner's Syndrome, Congenital Adrenal Hyperplasia, Clinical Hypothyroidism, McCune Albright Syndrome, Psychosocial Issues of Growth Delayed Children, Dental Problems Associated with GHD, Me and My Growth Hormone - A Child's View, Septo Optic Dysplasia, Panhypopituitarism, Failure to Thrive, Russell-Silver Syndrome, Newborns with Non-typical Genital Appearance, When My Child May Have Fertility Problems, Adult Growth Hormone Deficiency, etc. The MAGIC Foundation also publishes a magazine and sponsors an annual convention in July.

Keywords: Chronic illnesses and disabilities; Short stature; Development; Education; Support groups; Turners syndrome; Congenital adrenal hyperplasia; Growth disorders; McCune Albright syndrome; Down syndrome; Congenital hypothyroidism; Russell Silver syndrome; Child health; Support groups; Financial support;

Annotation: The Maternal and Child Health Policy Research Center provides policy analysis aimed at improving the financing and effectiveness of helath care delivery systems for children and adolescents, with a particular focus on children with special health needs, low-income youth, and adolescents. Its mission has been to strengthen public policy to be responsive to the needs of children, adolescents, and their families. The organization produces publications for policymakers, as well as consumers.

Keywords: Children with special health care needs; Family centered care; Community based services; Financing; Health insurance; Program evaluation; Access to health care; Economic factors; Barriers; Information sources; Consumer education; Research; Special education; Publications;

Annotation: Meld -- which has merged with the Parents as Teachers National Center -- is a program to enhance the capacity of those who parent to raise nurtured, competent children. Meld offers educational and support services for parents, trains family service providers to apply best practices in their work with families, and publishes a broad range of resource materials for parents and the people who work with them. Most Meld programs serve families during pregnancy and the child's first two years. The programs operate on a peer, self-help model, and have been replicated in over 100 sites in the U.S. and abroad. Services to consumers include publications and reference information, some of which is in Spanish.

Keywords: Adolescent parents; Parenting; Deaf parents; Parenting; Children with special health care needs; Hmong parents; Hispanic Americans; Minority groups;

Annotation: Mothers From Hell 2 is a national grass-roots parent group that advocates for the appropriate education, community acceptance, services, rights of, and entitlements for individuals with disabilities. The organization's newsletter, Brimstone Bulletin, is issued quarterly.

Keywords: Children with special health care needs; Parents; Advocacy;

Annotation: Mothers United for Moral Support National Parent to Parent Network (MUMS) is an organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS's mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of more than 21,000 families from 56 countries, covering over 3500 disorders, very rare syndromes or conditions can be matched. Parents can then exchange valuable medical information, the names of doctors, clinics and medical resources or research programs, and provide each other with emotional support. The Network's list serve is open to anyone. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. Donations are requested for matching service and newsletter subscription - but offered free if financial need is expressed. MUMS also is acting as a clearinghouse to distribute information about Hyperbaric Oxygen Therapy (HBOT) as a treatment for brain damage.

Keywords: Family support; Parent networking; Parent groups; Children with special health care needs; Rare diseases; Disabilities; Support groups;

Annotation: The National Adoption Center (NAC) expands adoption opportunities for children with special needs (those who are older or have physical, emotional, or mental disabilities) and children from minority cultures. Many of these children are siblings who need homes together. The center's National Adoption Exchange provides information, registration, and family recruitment referral services for children and potential adoptive parents. It operates a telecommunications system that links state adoption agencies, state and regional exchanges, and other interested groups. Its Internet site, Faces of Adoption: America's Waiting Children, features photos and descriptions of children for potential adopters. NAC publishes a newsletter and policy positions on adoption topics and sponsors conferences.

Keywords: Adoption; Child welfare; Children with special health care needs; Minority groups;

Annotation: The National Association of Pediatric Home and Community Care (NAPHAC) is devoted to the growing number of providers who work in the home based setting with children with complex chronic medical conditions. NAPHAC works to enhance the professional competence and satisfaction of nurses, physicians, social workers, respiratory therapists and other professionals working with the children and their families. Services to consumers include publications and reference information. NAPHAC publishes a quarterly newsletter, provides access to pediatric home consultative services, and supports research programs and regional education forums.

Keywords: Children with special health care needs; Job satisfaction; Competence;

Annotation: National Association of Private Special Education Centers (NAPSEC) is a nonprofit association whose mission is to ensure access for individuals to private special education as a vital component of the continuum of appropriate placements and services in American education. The association represents programs that provide special education for both privately and publicly placed children and adults and serves as the national voice in Washington for its membership of educators regarding policies that affect individuals with disabilities. Activities include a free referral service for parents, educators, counselors, and others seeking placement options for individuals with disabilities, annual and legislative conferences, a quarterly newsletter, and a monthly national issues service covering legislative initiatives, regulatory actions, educational issues, and judicial decisions. The association also publishes a member directory.

Keywords: School age children; Special education; Disabilities; Referrals;

Annotation: The National Catholic Partnership on Disability (NCPD), formerly the National Catholic Office for Persons with Disabilities, founded in 1982, provides workshops, retreats, and resources for pastoral ministries to promote the principles expressed in the 1978 "Pastoral Statement of U.S. Catholic Bishops on People with Disabilities." It assists pastoral workers in their ministry and encourages the appointment of diocesan coordinators of ministries with people with disabilities. Publications include a newsletter, NCPD National Update, a bi-montly E-NEWS, and resources on church and disability issues for dioceses and parishes.

Keywords: Disabilities; Religious organizations

Annotation: The National Center for Chronic Disease Prevention and Health Promotion is a component of the Centers for Disease Control and Prevention. Divisions of the center that are relevant to maternal and child health include the Division of Adolescent and School Health, Division of Nutrition and Physical Activity, Division of Diabetes Translation, Division of Cancer Prevention and Control, Division of Reproductive Health, Division of Oral Health, and Office on Smoking and Health.

Keywords: Smoking; Adolescent health; School health; Chronic illnesses and disabilities; Outreach; Community programs; Community health services; Public health nutrition; Nutrition research; Nutrition monitoring; Nutrition programs; Nutrition policies; Nutrition education; Women's health; Sexual health; Sexually transmitted diseases; Medical research; Prevention programs; Health promotion; Oral health; Physical activity; Data;

Annotation: The purpose of the National Center for Cultural Competence (NCCC) is to increase the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service delivery systems. The center's current work scope includes the Children & Youth with Special Health Care Needs (CYSHCN) Project and the Sudden Infant Death Syndrome and Other Infant Death program (both of these projects are funded by the Maternal and Child Health Bureau, Health Resources and Services Administration). In addition, the Center's Division of Research, Training and Education (DRTE) Project aims to increase the capacity of the Maternal and Child Health Bureau's DRTE-funded programs to incorporate principles and practices of cultural and linguistic competency in all aspects of leadership training. The Center provides networking opportunities and information exchange; offers training, technical assistance and consultation; maintains a pool of consultants; and develops products such as guidelines and assessments. The center's Web site includes promising practices and a Spanish language portal for families.

Keywords: Children with special health care needs; Cultural diversity; Cultural sensitivity; Linguistic competence; Networking; Training; Information networks; Program evaluation; Information sources; Title V programs; Infant care; Culturally competent services; Program development; Publications; Guidelines; Spanish language materials; SIDS; Resource centers; National MCH resource center;

Annotation: The National Center for Family Friends, formerly the Family Friends Resource Center, provides training, training materials, technical assistance, conferences, and workshops for participants in Family Friends, a national senior volunteer program established in 1986 with funding from the Robert Wood Johnson Foundation. Family Friends volunteers provide practical assistance and emotional support for families of children who are medically fragile or are in need of special services. Publications include How to Succeed in Fund Raising While Really Trying, Seniors and Children : Building Bridges Together, and a bi-monthly newsletter, Newsline, Bringing Family Friends To Your Community: Family Friends Program Guide, and Family Friends Training Manual. The center provides referrals, publications and reference information to consumers.

Keywords: Special health care needs; Respite care; Surrogate grandparents;

Annotation: The mission of the National Center for Medical Home Implementation is to work in cooperation with federal agencies, particularly the Maternal and Child Health Bureau (MCHB), to ensure that children with special needs have access to a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally-competent. Through the center, physicians, parents, administrators, and other health care professionals have access to educational, resource, and advocacy materials, guidelines for care, practice tools, and technical assistance. Activities of the center include: (1) developing educational and advocacy materials that address barriers to medical homes for CSHCN and improve the ability of pediatric health care professionals to overcome these barriers; (2) convening national workgroups to respond to policies and issue recommendations that benefit CSHCN; (3) disseminating outcomes of medical homes; and (4) establishing and supporting a national medical home mentorship network that provides technical assistance to states, communities, and individual to improve access to medical homes. The center is funded by a cooperative agreement from the U.S. Maternal and Child Health Bureau. Services to consumers include publications and reference information; some materials are available in Spanish. The center publishes a newsletter and has a list serve that is open to all requesters. The center also hold conferences, training seminars, and workshops. Prior to June 2008, it was previously known as the National Center of Medical Home Initiatives for Children with Special Needs.

Keywords: Children with special health care needs; Medical home; Training; Networking; Resource centers; National MCH resource center;

Annotation: Created by Congress in 1990, the National Center for Medical Rehabilitation Research conducts research and trains researchers in medical rehabilitation, assists in the development of orthotic and prosthetic devices and the dissemination of health information, and supports multidisciplinary medical rehabilitation research through grants, contracts, and cooperative agreements. The center also supports rehabilitation programs for people with physical disabilities resulting from injuries or from neurological, musculoskeletal, cardiovascular, pulmonary, and other physiological diseases or disorders. Public services include referrals, publications, and reference information. NCMRR sponsors conferences, workshops, and training seminars.

Keywords: Rehabilitation; Research;

Annotation: The National Center on Birth Defects and Developmental Disabilities (NCBDDD) is a federal agency within the Centers for Disease Control and Prevention. Activities include surveillance, research, technical assistance to states, and provision of information and education to the public. Topics include: causes of birth defects (including causes, having a healthy pregnancy, folic acid, and fetal alcohol syndrome); developmental disabilities (austism spectrum disorders, cerebal palsy, vision impairment, hearing loss, mental retardation), helping children develop and reach their full potential (child development, early hearing detection and intervention, attention deficit hyperactivity disorder, Duchenne Becker Muscular Dystrophy), and promoting health and well-being among people of all ages with disabilities (disability and health, hereditary blood disorders, and woment with disability). NCBDDD publishes a newsletter and a journal and sponsors conferences, training seminars, and workshops. Some publications and the Web site are available in Spanish.

Keywords: Disease prevention; Environmental health; Teratology; Congenital abnormalities; Data; Developmental disabilities; Prenatal care; Pregnancy; Human development;

Annotation: The Early Hearing Detection and Intervention (EHDI) program at the National Center on Birth Defects and Hearlng Disorders collaborates with federal, national, and state agencies and organizations in assisting states and territories to develop and implement EHDI programs and assists states in building EHDI data and surveillance systems to improve their capacity to ensure that all infants are screened for hearing loss and receive appropriate follow-up services. It supports research efforts to identify causes of hearing loss, determines developmental outcomes and family issues, collectsInformation on referral rates from EHDI programs, assesses the effectiveness and cost of EHDI programs, uses information gained through the EHDI surveillance systems to find new and preventable causes of hearing loss, and maintains an information clearinghouse on issues related to EHDI that will be available through the EHDI web site and bi-monthly teleconferences.

Keywords: Hearing screening; Hearing tests; Neonatal screening; Newborn infants;

Annotation: The National Collaborative on Workforce and Disability for Youth (NCWD/Youth) is composed of partners with expertise in disability, education, employment, and workforce development policy and practice. NCWD/Youth is housed at the Institute for Educational Leadership in Washington, DC. The Collaborative, funded through the U.S. Department of Labor's Office of Disability Employment Policy, is charged with assisting state and local workforce development systems to integrate youth with disabilities into their service strategies.

Keywords: Adolescents with special health care needs; Disabilities; Youth; Young adults; Transition to independent living; Workplace; Work force;

Annotation: The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities and their families. The council publishes a newsletter.

Keywords: Disabilities; Accessible facilities; Policy development;

Annotation: National Disability Rights Network (NDRN), formerly tthe National Association of Protection and Advocacy Systems, is the membership organization of state protection and advocacy systems and client assistance programs (CAP) that were established by federal law in each state and U.S. territory to protect the rights of people with disabilities. The network provides training and technical assistance to its members, monitors congressional action that may affect services provided to people with disabilities, and monitors the administrative agencies responsible for the protection and advocacy systems and CAP programs (the Center for Mental Health Services, the Rehabilitation Services Administration, and the Administration on Developmental Disabilities). Services to consumers include referrals, publications, and reference information. The organization publishes a newsletter and sponsors conferences, training seminars, and workshops.

Keywords: Disabilities; Advocacy;

Annotation: The National Dissemination Center for Children with Disabilities (NICHCY) assists parents, educators, caregivers, and others in ensuring that all children and youth with disabilities have better opportunities to reach their full potential. The center provides personal responses to specific questions in either English or Spanish, referrals to other organizations, information packets, publications (including eNews), and technical assistance to parent and professional groups. A catalog is available. There is a nominal fee for some publications. Some materials are available in Spanish. State resource sheets list agencies and organizations for parents and professionals that address disability-related issues in each state. A research-to-practice database extracts key findings from research studies, presents implications for practice, and includes additional resources on the topics of the research.

Keywords: Early intervention; Parenting; Children with special health care needs; Special education; Adolescents; Health promotion; Resource centers; Information sources; Publications; Family centered services; Research; Program descriptions; Spanish language materials; Nuvee

Annotation: The National Early Childhood Technical Assistance Center (NECTAC) supports the implementation of the early childhood provisions of the Individuals with Disabilities Education Act (IDEA). Their mission is to strengthen service systems to ensure that children with disabilities (birth through age five) and their families receive and benefit from high quality, culturally appropriate, and family-centered supports and services. The center is funded by the U.S. Department of Education. A publications list and electronic discussion lists are available on the Web site. The center was formerly called the National Early Childhood Technical Assistance System (NECTAS).

Keywords: Early intervention; Special education; Early childhood education; Children with special health care needs; Outreach; Information services;

Annotation: The National Family Caregivers Association (NFCA) is a nonprofit organization that works to improve the quality of life for America's over 50 million family caregivers of chronically ill or disabled loved-ones and to educate the public about the difficulties caregivers face. The association emphasizes the needs and problems of family caregivers as separate and distinct from the needs of the people for whom they care. Services to consumers include referrals and publications. Publications include Take Care!, a quarterly self-help newsletter for caregivers. The association also hosts a list serve and sponsors training seminars.

Keywords: Family centered services; Caregivers; Families; Chronic illnesses and disabilities; Support groups;

Annotation: The National Foundation of Dentistry for the Handicapped (NFDH), an affiliate of the American Dental Association, works to improve the oral health of disabled and elderly citizens. Activities include providing treatment to indigent disabled and elderly people through dentists who donate their services, arranging for dentists to make house calls for people who cannot travel, and teaching oral hygiene skills to developmentally disabled people. NFDH provides referrals to consumers. Some materials are available in Spanish.

Keywords: Special health care needs; Oral health; Older adults; Dental care; Dental hygiene;

Annotation: The National Health Law Program (NHeLP) is a national support center that provides technical assistance to advocates of low-income adults, minorities, the elderly, and people with disabilities. Attorneys provide expertise on Medicaid, managed care, EPSDT, rights of AIDS patients, insuring the uninsured, maternal and infant care access, and state and local government responsibility for care. Many of NHeLP's publications can be downloaded free of charge from the Web site. Services for consumers include referrals, reference information, and publications. Materials are available in Spanish and some Asian languages. NHeLP also maintains a consumer-oriented Web site, http://www.healthcarecoach.com, which provides information on keeping health care costs down, dealing with health insurance issues, and numerous health care issues. The program also has offices in Chapel Hill, North Carolina and in Washington, DC.

Keywords: Legislation; Public policies; Medicaid; Medicare; Managed care; EPSDT

Annotation: The National Health Law Program (NHeLP) is a national support center that provides technical assistance to advocates of low-income adults, minorities, the elderly, and people with disabilities. Attorneys provide expertise on Medicaid, managed care, EPSDT, rights of AIDS patients, insuring the uninsured, maternal and infant care access, and state and local government responsibility for care. Many of NHeLP's publications can be downloaded free of charge from the Web site. Services for consumers include referrals, reference information, and publications. Materials are available in Spanish and some Asian languages. NHeLP also maintains a consumer-oriented Web site, http://www.healthcarecoach.com, which provides information on keeping health care costs down, dealing with health insurance issues, and numerous health care issues. The program also has offices in Los Angeles, California (main office) and in Washington, DC.

Keywords: Legislation; Public policies; Medicaid; Medicare; Managed care; EPSDT

Annotation: The National Health Law Program (NHeLP) is a national support center that provides technical assistance to advocates of low-income adults, minorities, the elderly, and people with disabilities. Attorneys provide expertise on Medicaid, managed care, EPSDT, rights of AIDS patients, insuring the uninsured, maternal and infant care access, and state and local government responsibility for care. Many of NHeLP's publications can be downloaded free of charge from the Web site. Services for consumers include referrals, reference information, and publications. Materials are available in Spanish and some Asian languages. NHeLP also maintains a consumer-oriented Web site, http://www.healthcarecoach.com, which provides information on keeping health care costs down, dealing with health insurance issues, and numerous health care issues. The program also has offices in Los Angeles, California (main office) and in Chapel Hill, North Carolina.

Keywords: Legislation; Public policies; Medicaid; Medicare; Managed care; EPSDT

Annotation: The National Institute on Disability and Rehabilitation Research (NIDRR) supports efforts to improve rehabilitation systems, products, and practices. NIDRR is one of three components of the Office of Special Education and Rehabilitative Services (OSERS) at the U.S. Department of Education. The Institute participates in cooperative agreements and provides grants to universities (including graduate student fellows and university consortia), Indian tribes, research groups, nonprofit and for-profit organizations, and individuals. Services to consumers include referrals, publications, and reference information.

Keywords: Disabilities; Rehabilitation; Grants;

Annotation: The National Oral Health Information Clearinghouse (NOHIC), a service of the National Institute of Dental and Craniofacial Research, focuses on the information needs of individuals with medical or disabling conditions that can affect their oral health. Staff responds to inquiries from consumers, health professionals, and the public; produces and distributes professional and consumer education materials on special care and oral health; and also provides information on general oral health topics. Publications, some in Spanish, can be viewed and ordered online.

Keywords: Oral health; Craniofacial abnormalities; Special health care needs; Federal government; Spanish language materials;

Annotation: The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations and individuals dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD provides information on diseases, referrals to patient organizations, a networking program, medication assistance programs, research grants and fellowships, and advocacy on issues related to rare diseases. Publications include the NORD resource guide (5th edition, 2005) for use in offices and instititional settings; the NORD Guide to Rare Disorders, a series of booklets for physicians, and reports on specific diseases. The organization also publishes a newsletter and sponsors an annual conference.

Keywords: Orphan drugs; Rare diseases; Advocacy; Information services; Medical research; Health education; Information sources; Online databases; Publications;

Annotation: The National Organization on Disability (N.O.D.) is a national advocacy group working to improve opportunities for Americans with every kind of disability. Particular areas of focus include employment, technology, housing, religious participation, emergency preparedness, and access to healthcare and other services. Local governments are encouraged to join N.O.D.'s Community Partnership Program to engage with citizens with disabilities to maximize their potential to participate and contribute to their communities. N.O.D. provides resources and links on its website.

Keywords: Disabled; Disabilities; Habilitation; Community organizations

Annotation: The National Rehabilitation Association (NRA) is a membership organization that works to improve the quality of life for people with disabilities through advocacy and professional education. Members are professionals and advocates in the field of rehabilitation, people with disabilities, and their immediate families. The association advocates for government support of rehabilitation programs and activities, sponsors workshops, training seminars, and an annual training conference, and produces the Journal of Rehabilitation , a newsletter, and other publications.

Keywords: Rehabilitation; Advocacy, Education, Disabilities, Support groups

Annotation: The National Rehabilitation Information Center (NARIC) is funded by the National Institute on Disability and Rehabilitation Research. The center's collections include books, journal articles, audiovisual materials, organization pamphlets and referral sheets, and results of federally funded research projects. Services include searches of REHABDATA, a bibliographic database, a listserv, information and referral, and document delivery. Publications include the NIDRR Program Directory.

Keywords: Disabilities; Rehabilitation; Information services; Resource centers; Program descriptions; Referrals; Directories; Online databases; Information sources; Special education; Spanish language materials; Publications;

Annotation: The National Resource Center for Adoption (NRCA) -- formerly the National Child Welfare Resource Center for Adoption -- assists federally-funded child welfare agencies in building their capacity to ensure the safety, well-being, and permanency of abused and neglected children through adoption and post legal adoption services, program planning, policy development, and practice. The resource center provides technical assistance and training to states and tribes to help build child welfare adoption programs, tailoring its technical assistance to the needs and circumstances of the particular state or tribe. The center's Web site provides access to the news on adoption, chat room discussions on specific adoption topics, links to related sites, and an online reference desk. Publications include curricula, a materials catalog, and a newsletter highlighting issues, programs, and policies in the field.

Keywords: Adoption; Technical assistance; Child welfare; Child abuse; Child neglect; Resource centers;

Annotation: The National Sports Center for the Disabled (NSCD), formerly the Winter Park Handicap Program, was established in 1970 to offer recreational opportunities for individuals with disabilities in the Colorado Rockies. The center's program enables people with over 40 different types of disability to achieve the previously unachievable in skiing, rafting, climbing, and other endeavors. The program offers challenges that create personal growth, enhance family involvement, and allow participants to experience the outdoors on an equal basis regardless of ability level. The center publishes a newsletter,Outrigger , four times a year and produces a program brochure for individuals with disabilities. A catalog is available. In addition, the center offers referrals and reference information to people with disabilities and sponsors conferences, training seminars, and workshops.

Keywords: Rehabilitation; Recreation; Disabilities; Colorado; Information services; Training;

Annotation: The National Therapeutic Recreation Society (NTRS), a branch of the National Recreation and Park Association, is a membership organization of practitioners, administrators, educators, volunteers, students, and others interested in providing therapeutic recreation services for people with disabilities in clinical facilities and in the community. The Society unites professional and paraprofessional therapeutic recreation personnel and encourages their professional development, advocates for the leisure rights of people with disabilities, encourages and conducts research to improve the quality of therapeutic recreation service, and promotes relationships between therapeutic recreation personnel and professions and agencies concerned with the health and well-being of people with disabilities. Services to consumers include referrals. Publications include Therapeutic Recreation Journal. NTRS sponsors conferences and training seminars.

Keywords: Recreation therapy; Community integration; Children with special health care needs;

Annotation: New England SERVE is a health policy research and planning organization that has been working with the six New England state Departments of Public Health, health care organizations, providers and families of children with special health care needs to promote family-centered system of care. With the support of a number of grants from the Maternal and Child Health Bureau over the past 15 years, New England SERVE has provided technical assistance to state leadership teams to enhance their capacity to assess the quality of health care delivery and financing systems for children with ongoing health conditions. Recent projects have linked families, state Title V programs, managed care organizations, state Medicaid programs and community based providers through a series of regional Task Forces. New England SERVE provides health policy research and consultation to states, health care organizations and communities outside of New England as well. Activities have included: design and implementation of quality measurement tools, community based needs assessments, strategies for building effective parent-professional collaboration and consumer leadership, and a set of tools for improving the quality of family-centered systems of care in managed care settings. Many of these materials are available on the Web site. Some materials are available in Spanish.

Keywords: Special health care needs;

Annotation: The North American Council on Adoptable Children (NACAC) is an advocacy organization that works for permanent placement of special needs children and for the families who eventually adopt them. NACAC focuses its program services in four areas: public policy advocacy, parent leadership capacity building, education and information sharing, and adoption support. Services to consumers include publications and reference information. The council also publishes a newsletter and sponsors conferences. The council's Web site includes a database of parent support groups and information on adoption, adoption support, recruiting families, transracial parenting, post-adoption services, public policy, and other topics.

Keywords: Adoption; Children with special health care needs; Advocacy; Information services;

Annotation: The Center for Universal Design (formerly the Center for Accessible Housing) is a national resource center on accessible and universal design in housing, buildings, and products. The Center conducts research on ways to improve accessible housing, develops new designs for homes and products, and trains people in providing accessible housing and universal design. The Center also offers a fee-based technical design service and Information and Referral Service on accessible housing and universal design. Publications include a newsletter and a catalog. The Center also sponsors training seminars and workshops.

Keywords: Habilitation; Accessibile facilities; Research programs; Training; Information services; Physical disabilities;

Annotation: The PACER Center, founded in 1977, was created by parents of children and youth with disabilities to help other parents and families facing similar challenges. PACER strives to improve and expand opportunities that enhance the quality of life for children and adults with disabilities and their families. The center offers training and information about special education laws and procedures, parents' rights and responsibilities, and health and transition issues. PACER is staffed primarily by parents of children with disabilities and works with a coalition of 18 disability organizations. PACER offers programs for students, in-service training for professionals, and referral and reference information for the general public. The organization sponsors confeences, produces a variety of publications (with some materials available in Spanish and Asian languages), and develops and develops specialized Web sites.

Keywords: Assistive devices; Affective disorders; Behavior disorders; Parent education; Mainstreaming; Young children; Supported employment; Special education; Transitions; Disabilities; Parents; Children; Parenting; Training; Family resource centers;

Annotation: The Parent Educational Advocacy Training Center (PEATC) is an independent nonprofit organization that provides training programs, information, referrals, and consultation services for parents of children with special educational needs in Virginia. Training program sponsors include state departments of education, local education agencies, community mental health and mental retardation services boards, private schools, and disability interest groups. Publications include Negotiating the Special Education Maze: A Guide for Parents and Teachers, Beginning with Families 3rd Edition, A Parent's Guide to Early Intervention Services, Managed Care Maze? What About the Children (video), Infusing Cultural Competence in Early Childhood Programs , A Challenge for Teen Parents: video and guide books, Fostering Health in the Foster Care Maze: video and guide books and The PEATC Press, a quarterly newsletter. Some materials are available in Spanish. The center receives funding from the Office of Special Education and Rehabilitative Services, U.S. Department of Education.

Keywords: Special education; PL 94-142; Individualized education programs; Education; Advocacy; Children with special health care needs; Training; Refferals;

Annotation: The Individuals with Disabilities Education Act (IDEA), the federal special education law, establishes a grant program to support organized parent-to-parent efforts. The purpose of these programs, known as Parent Training and Information (PTI) Centers, is to enable parents to participate more effectively with professionals in meeting the educational needs of children with disabilities. Parent Training and Information (PTI) Centers exist in each state to assist parents of infants, children, and youth with disabilities. Although the activities of the PTIs vary from state to state, typically parents receive training individually and in groups to understand their rights under federal and state law and to develop skills to enable them to be effective members of the team planning an appropriate educational program for their child. Speakers and workshops are often scheduled to address parents' rights and responsibilities in special education, communication skills, transition from school to independent living, integration of students with disabilities, networking, advocacy, and parent/professional partnerships. Many PTIs have lending libraries, publish newsletters, and make other materials available to families.

Keywords: Parents; Children with special health care needs; Education; Training; Individuals with Disabilities Education Act; IDEA;

Annotation: Parents Engaged in Education Reform (PEER) is a national technical assistance project funded by the U.S. Department of Education, Office of Special Education Programs. PEER's purpose is to increase the participation of parents of children with disabilities and their organizations in school reform efforts. PEER Project activities are based on the premise that active participation of parents and communities is essential if the promise of school reform is to be fulfilled for all students. Through workshops, publications, and institutes, the PEER Project provides opportunities for parents, parent organizations, and professionals to learn from each other about school reform efforts occurring in states and local communities. In addition, to enhance opportunities for early literacy in reading for at-risk students, PEER is providing information and training to parent and community organizations in promising and best practices in literacy. Services to consumers include referrals, reference information and publications. Some materials are available in Spanish.

Keywords: Parent support programs; Children with special health care needs; Individuals with Disabilities Education Act; IDEA;

Annotation: Parents Helping Parents (PHP) is a nonprofit, family resource center that benefits children with special needs. This includes children of all ages (birth through life) and all backgrounds who have a need for special services due to any special need, including but not limited to illness, cancer, accidents, birth defects, neurological conditions, premature birth, learning or physical disabilities, mental health issues, and attention deficit (hyperactivity) disorder. PHP's mission is to help children with special needs receive the resources, love, hope, respect, health care, education, and other services they need to reach their full potential by providing them with strong families, dedicated professionals, and responsive systems to serve them.

Keywords: Disabilities; Parents; Siblings; Children with special health care needs; Parent groups; Support groups; Health educaton; Family resource centers; Spanish language materials; Learning disabilities; Mental disorders;

Annotation: Rehabilitation International is a federation of 185 organizations in 85 countries whose programs assist people with disabilities. The federation works to prevent disability and offers support for rehabilitation and community integration of people with disabilities. Some materials are available in Spanish, French, and Arabic. The organization publishes a newsletter, catalog and journal and sponsors conferences and training seminars.

Keywords: Rehabilitation; Disabilities; Support groups;

Annotation: RESNA is an interdisciplinary membership organization composed of people with a common interest in technology and disability, whose mission is to improve the potential of people with disabilities to achieve their goals through the use of technology. RESNA's membership ranges from rehabilitation professionals to providers and consumers. Services to consumers include publications and reference information. RESNA publishes a semi-annual journal Assistive Technology, the bimonthly newsletter RESNA News, and other publications through RESNA Press. RESNA also sponsors national and regional conferences that provide forums for the dissemination of information on the development and delivery of state-of-the-art technologies.

Keywords: Children with special health care needs;

Annotation: Search and Respond (a service of Exceptional Parent magaine) prints letters from people looking for others dealing with similar disabilities, health care needs, or other situations. All replies are forwarded; some are printed in the magazine. The organization also sponsors conferences.

Keywords: Children with special health care needs;

Annotation: Shriners Hospital for Children operates 19 orthopedic hospitals, one hospital that provides orthopedic, burn and spinal cord injury care to and three burn hospitals serving children under the age of 18 in the U.S., Mexico, and Canada. Diagnosis and treatment are offered solely on the basis of medical need, at no charge to the patient's family. The burn hospitals accept children who need immediate care or those needing plastic surgery and rehabilitation (healed burns). Research on the causes of crippling and scarring and on methods of treatment is conducted at all 22 of the Shriners Hospitals. Eligibility for treatment is determined on the basis of applications completed by parents or guardians, the referring physician, and a local Shriner sponsor. Referrals, publications, and reference information are available to the Shriners Hospitals. Some resources are available in Spanish.

Keywords: Hospitals; Children with special health care needs; Orthopedics; Burns;

Annotation: The Specialized Training of Military Parents (STOMP) is a federally funded parent training and information center established to assist military families who have children with special educational and health needs. The organization provides information, referrals, assistance, and training about testing and assessment and Individual Education Plans (IEP's) to families who have children with disabilities. The center is staffed by parents of children who have disabilities and have experience in raising children in military communities and traveling with spouses to different locations. The organization also sponsors conferences and training seminars and produces publications (including a newsletter) and maintains an open listserv. Some materials are available in Spanish and Asian languages.

Keywords: Children with special health care needs; Parents; Military;

Annotation: St. John's Community Services provides a variety of community-based services for children, youth, adults and seniors with developmental and other disabilities in Washington, DC, Virginia, New Jersey, Pennsylvania, and Tennessee..

Keywords: Children with special health care needs; Childrenwith developmental disabilities; Community programs; Community agencies; Community based services;

Annotation: Through the Looking Glass (TLG) is a nationally recognized non-profit agency and first National Resource Center for Parents with Disabilities. It provides direct services, training, materials and research concerning families in which a child, parent or grandparent has a disability or medical issue. Direct services to local Bay Area families include in-home clinical intervention services, development of adaptive parenting equipment, parent support groups and other services geared to each family's unmet needs. The mission of the National Resource Center is to empower parents and potential parents with disabilities by disseminating disability-appropriate information regarding parenting to parents, disability advocates, and legal, medical, and social services providers. Services to consumers include referrals, publications, and reference information; some materials are available in Spanish. The resources of the National Resource Center include a national toll-free information and referral line; a national clearinghouse; consultations, training and workshops for parents and professionals; a national parent-to-parent network of parents with disabilities; regional and international conferences; publications including a quarterly newsletter free to parents and professionals; an adaptive parenting equipment catalog and a national survey of parents with disabilities. Other staff publications include Mother to Be: A Guide to Pregnancy and Birthing for Women with Disabilities and Mother Father Deaf: Living between Sound and Silence. The center also has several ongoing research projects concerning parents with disabilities and their families.

Keywords: Special health care needs; Women; Chronic illnesses and disabilities; Parenting; Pregnancy; Children with special health care needs;

Annotation: Transition Research Institute (TRI) at Illinois defines effective practices that will promote the successful transition of youths with disabilities from school to adult life. The institute was designed to address both the theoretical and practical problems of transition and to organize and conduct a complementary set of activities including research, evaluation, and evaluation technical assistance. Services to consumers include referrals, publications, and reference information. Many publications focusing on transition are available. As headquarters for the National Transition Alliance for youth with Disabilities (WTA), TRI continues to promote the inclusion of students with disabilities in the national school-to-work efforts.

Keywords: Transition to independent living; Disabilities; Youth in transition programs; Research; Evaluation;

Annotation: The Branch of Exceptional Education assures that Indian children with disabilities, who are between the ages of 5 and 22 and who are enrolled in Bureau-funded schools, have available to them a free appropriate education in the least restrictive environment in accordance with an Individualized Education Program (IEP). Activities include: monitoring to assure the rights of the children with disabilities and their parents or guardians are protected; providing technical assistance to provide for the education of all children with disabilities; and assessing the effectiveness of efforts to educate children with disabilities. Services to consumers include referrals and reference information. Some materials are available in Navajo. The organization publishes a newsletter, and sponsors conferences and training seminars.

Keywords: Native Americans; Minority groups; Education; Disabilities; Individualized education programs; Individualized education programs;

Annotation: The Office of Special Education Programs (OSEP) in the Office of Special Education and Rehabilitative Services (OSERS) administers the Individuals with Disabilities Education Act (IDEA). IDEA provides financial assistance to State Education Agencies and through them to local education agencies to help make a free appropriate public education available to all eligible children with disabilities ages 3 through 21. IDEA also provides funds to assist states in the development of a comprehensive state-wide system of early intervention services for eligible infants and toddlers and their families. In addition, OSEP works to ensure that eligible children with disabilities receive quality special education and related services. OSEP provides reference information and sponsors conferences, training seminars, and workshops. The Office also administers discretionary grant programs that support research and development, training, technical assistance and parent training, and technology activities.

Keywords: Special education; P; L; 94-142; Individuals with Disabilities Education Act (IDEA); Financial support; Public education; Children with special health care needs; Early intervention; Disabilities;

Annotation: The Rehabilitation Services Administration administers federally sponsored and supported vocational rehabilitation programs for people with physical and mental disabilities.

Keywords: Rehabilitation; Disabilities; Federal programs;

Annotation: The Social Security Administration (SSA) administers the federal government's social security programs, including retirement benefits, disability benefits, survivors' benefits, and Supplemental Security Income (SSI). Publications are available on the Web site; some are available in Arabic, Armenian, Chinese, Farsi, French, Greek, Haitian Creole, Italian, Korean, Polish, Portuguese, Spanish, Russian, Tagalog, and Vietnamese.

Keywords: Social Security; Retirement; Disabilities; Supplemental security income;

Annotation: VSA arts is an international nonprofit organization founded in 1974 by Jean Kennedy Smith to promote education and lifelong learning opportunities in the arts for people with disabilities. Through a worldwide affiliate network, nearly 5 million people participate in VSA arts programming annually. VSA arts programs in music, dance, drama, creative writing, and the visual arts develop learning skills, encourage independence, and promote access and inclusion. VSA provides referrals, publishes a newsletter, and sponsors training seminars.

Keywords: Education; Art; CSHN programs; Mental retardation;

Annotation: The Washington State Fathers Network (WSFN) advocates for fathers of children with special health care needs through support and mentoring programs, conferences and training seminars, a newsletter, Web site, development of curriculum, and ongoing work with professionals to enhance service delivery for all family members. Services to consumers include referrals, publications, and reference information. Some materials are available in Spanish. WSFN also publishes Connections, a newsletter issued 3 times annually, and produces an electronic newsletter for families of children with special needs.

Keywords: Children with special health care needs;

Annotation: The World Institute on Disability (WID), a public policy center run by people with disabilities, uses research, public education, training, and model program development to create a more accessible and supportive society for all people, disabled and nondisabled alike. Services to consumers include referrals and materials are available in Spanish language. WID is a part of the Information Technology and Technical Assistance Training Center.

Keywords: Developmental disabilities; Advocacy; Spanish language materials; Disabilities; Public policies;