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Strengthening the evidence for maternal and child health programs

Children with Special Health Care Needs - Organizations

Children with Special Health Care Needs

Annotated Lists of Organizations on Key Topics in Maternal and Child Health

This list of 88 organizations is drawn from the MCH Organizations online database. Contact information is the most recent known to the MCH Digital Library. To identify additional materials on this topic, search the Organizations database using our online search form.

The MCH Organizations Database lists government, professional, and voluntary organizations involved in maternal and child health activities, primarily at a national level. Information available to consumers is indicated where known.

Displaying 88 records.

ADA National Network

Annotation: The ADA National Network (formerly the Americans with Disabilities Act Regional Disability and Business Technical Assistance Centers) consists of 10 regional centers that provide local assistance and foster implementation of the Americans with Disabilities Act (ADA) throughout the United States. The regional centers focus on the specific needs of the residents who reside in their service area. The Network develops projects and events of national significance and works closely with national partners. It conducts research, provides training, and produces a variety of publications. The ADA Knowledge Translation Center, which is also part of the Network, conducts systematic reviews of the current state of ADA related research and translating findings into plain language summaries for policymakers, technical reports, publications in peer-review journals, and presentations at national conferences.

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

Adaptive Environments Center (AEC)

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

Advocacy Center for Persons with Disabilities (ACPD, Advocacy Center)

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: Advocacy, Disabilities, Special health care needs

American Association of People with Disabilities (AAPD)

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: Adults, Special health care needs

American Association on Health and Disability (AAHD)

Annotation: The American Association on Health and Disability (AAHD) advances health promotion and wellness initiatives for children and adults with disabilities. AAHD accomplishes its mission through advocacy, education, public awareness, and research efforts at the federal, state, and community levels. The website contains the Health Promotion and Wellness Resource Center for People with Disabilities, which provides abstracts, best practices, data, links, fact sheets, presentations, and state resources on primary conditions, secondary conditions, and other health and disability-related topics. Additional content includes the Disability and Health Journal, news, initiatives, a public policy center, and membership and scholarship information.

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

ARCH National Respite Network and Resource Center (ARCH)

Annotation: ARCH National Respite Network and Resource Center assists and promotes the development of quality respite and crisis care programs in the United States. The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community; the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels; and the Respite Technical Assistance Center, which is funded by the U.S. Administration on Aging. ARCH National Respite Network and Resource Center is a project of the Chapel Hill Training-Outreach Project.

Keywords: Advocacy, Coalitions, Crisis intervention, Family support services, Information networks, Life course, Resource centers, Respite care, Special health care needs, Technical assistance

Association for Persons with Severe Handicaps (TASH)

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, Advocacy, Disabilities, Handicapping conditions, Information services, Integration, Special education, Special health care needs

Beach Center on Disability

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, Children, Developmental disabilities, Family resource centers, Technology dependence

Birth Defect Research for Children (BDRC)

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, Family support services, Information services

Center on Human Policy, Law, and Disabilities Studies

Annotation: The Center on Human Policy, Law, and Disabilities Studies 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: Inclusion, Public policies, Special health care needs

Child Care Plus+: The Center on Inclusion in Early Childhood

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.

Keywords: Child care, Children with special health care needs

Children's Hopes and Dreams Foundation

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

Christian Reformed Church in North America, Disability Concerns

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: Clergy, Disabilities, Inclusion, Mental retardation, Religious organizations

Communities Can

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

Coordinating Center for Home and Community Care

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, Case management, Chronic illnesses and disabilities, Home care services, Refferals, Technical assistance

Council for Exceptional Children (CEC)

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

Council of State Administrators of Vocational Rehabilitation (CSAVR)

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

Council on Quality and Leadership

Annotation: The Council on Quality and Leadership (CQL) offers consultation, accreditation, training and certification services to organizations and systems that share the vision of dignity, opportunity and community for all people, focusing on improving the quality of life for people with disabilities, people with mental illness, and older adults. It is an international not-for-profit organization.

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

Dental Lifeline Network

Annotation: The Dental Lifeline Network (formerly the National Foundation of Dentistry for the Handicapped), an affiliate of the American Dental Association, works to arrange comprehensive oral health care for individuals with special needs through a national network of direct service programs involving volunteer dentists and laboratories. Programs include Donated Dental Services, Bridge/Campaign of Concern, and HouseCalls. The network publishes Dental Lifeline Network News and collaborates with dental suppliers to offer DentaCheques, a revenue-generating coupon book for dentists.

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

Disability Rights Education and Defense Fund (DREDF)

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: Civil rights, Disabilities, IDEA, Individuals with Disabilities Education Act, Research, Training

Disability Statistics Center (DSRRTC)

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: Chronic illnesses and disabilities, Disabilities, Statistics

Disabled and Alone/Life Services for the Handicapped

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, Health care financing, Children with special health care needs, Counseling, Disabilities, Financial planning, Financial support, Information services

Early Childhood Technical Assistance Center (ECTAC)

Annotation: The Early Childhood Technical Assistance Center (ECTAC) 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 online discussion lists are available on the Web site. The center was formerly called the National Early Childhood Technical Assistance System (NECTAS).

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

Easter Seals

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: Advocacy, Developmental disabilities, Rehabilitation

Family Resource Center on Disabilities (FRCD)

Family Voices

Annotation: Family Voices aims to achieve family-centered care for children and adolescents with special health care needs. Family Voices provides families with tools to make informed decisions, advocate for improved public and private policies, build partnerships with professionals, and serve as trusted health care resources. Family Voices provides technical assistance, training, and connections among Family-to-Family Health Information Centers and partnering organizations. The website features health information and resources including publications, news, projects, events, and advocacy efforts.

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

Fathers' Network

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, Consumer education, Family centered services, Fathers, Information sources, Parenting, Public awareness materials, Publications, Referrals, Spanish language materials, Special education

Federal Resource Center for Special Education

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

Federation for Children with Special Needs (FCSN)

Friends' Health Connection (FHC)

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

Genetic and Rare Diseases Information Center (GARD)

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, Information services, Rare diseases, Special health needs

Helen A. Keller Institute for Human disAbilities (KIHd)

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

International Association for Disability and Oral Health (IADH)

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, Access to health care, Disabilities

Jewish Children's Adoption Network (JCAN)

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

Kids as Self Advocates (KASA)

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 developmental disabilities, Adolescents with special health care needs, Advocacy, Listservs, Peer education, Peer support programs

Kids on the Block

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, Audiovisual materials, Children, Educational materials, Mainstreaming, Psychosocial factors, Special education

Lifeline Pilots (LLP)

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

Lifetime Advocacy Plus (LA+)

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: Adults, Special health care needs

MAGIC Foundation (MAGIC)

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, Child health, Congenital adrenal hyperplasia, Congenital hypothyroidism, Development, Down syndrome, Education, Financial support, Growth disorders, McCune Albright syndrome, Russell Silver syndrome, Short stature, Support groups, Support groups, Turners syndrome

Mothers from Hell 2 (MFH)

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: Advocacy, Children with special health care needs, Parents

Mothers United for Moral Support National Parent to Parent Network (MUMS)

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, Children with special health care needs, Disabilities, Parent groups, Parent networking, Rare diseases, Support groups

National Adoption Center (NAC)

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

National Association of Pediatric Home and Community Care, Department of Pediatrics

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, Competence, Job satisfaction

National Association of Private Special Education Centers (NAPSEC)

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: Disabilities, Referrals, School age children, Special education

National Catholic Paratnership on Disability (NCPD)

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

National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP)

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

National Center for Cultural Competence (NCCC)

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 provides technical assistance and consultation, networking opportunities, and information for health professionals and policymakers about designing, implementing, and evaluating culturally competent health services, including services for children with special health care needs and their families. Resources and publications include policy briefs, checklists, self assessments, promising practices, distance learning, and conference information. The center's Web site includes a Spanish language portal for families.

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

National Center for Family Friends

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: Respite care, Special health care needs, Surrogate grandparents

National Center for Medical Home Implementation (NCMHI)

Annotation: The National Center for Medical Home Implementation (NCMHI) works to ensure that all children and youth, including children with special needs, have a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. NCMHI provides medical home resources and advocacy materials, technical assistance, and tools to physicians, families, and other medical and non-medical providers who care for children. The Center works in cooperation with federal agencies, particularly the Maternal and Child Health Bureau (MCHB) and other partners and stakeholders to meet its goals and objectives.

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

National Center for Medical Rehabilitation Research (NCMRR)

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

National Center on Birth Defects and Developmental Disabilities (NCBDDD)

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

National Center on Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program (EHDI)

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

National Collaborative on Workforce and Disability for Youth (NCWD/Youth)

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, Transition to independent living, Work force, Workplace, Young adults, Youth

National Council on Disability (NCD)

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

National Disability Rights Network (NDRN)

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: Advocacy, Disabilities

National Family Caregivers Association (NFCA)

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

National Health Law Program (NHeLP)

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: EPSDT, Legislation, Managed care, Medicaid, Medicare, Public policies

National Health Law Program (NHeLP)

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: EPSDT, Legislation, Managed care, Medicaid, Medicare, Public policies

National Health Law Program, North Carolina Office (NHeLP)

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: EPSDT, Legislation, Managed care, Medicaid, Medicare, Public policies

National Institute of Dental and Craniofacial Research, National Oral Health Information Clearinghouse (NOHIC)

National Institute on Disability and Rehabilitation Research (NIDRR)

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, Grants, Rehabilitation

National Organization for Rare Disorders (NORD)

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, Advocacy, Health education, Information services, Information sources, Medical research, Online databases, Publications, Rare diseases

National Organization on Disability (N.O.D.)

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: Community organizations, Disabilities, Disabled, Habilitation

National Rehabilitation Association (NRA)

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: Advocacy, Education, Disabilities, Support groups, Rehabilitation

National Rehabilitation Information Center (NARIC)

Annotation: The National Rehabilitation Information Center (NARIC) is the library of the National Institute on Disability and Rehabilitation Research (NIDRR). NARIC collects, catalogs, and disseminates the articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDRR. These projects focus on a wide range of issues, including technology, health and function, independent living, and capacity building. The website content can be viewed in English or Spanish.

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

National Resource Center for Adoption (NRCA)

Annotation: The National Resource Center for Adoption (NRCA) -- formerly the National Child Welfare Resource Center for Adoption -- works to increase the capacity of States, Tribes, and territories to improve adoption systems; integrate policy and practice; and develop, expand, strengthen, and improve the quality and effectiveness of adoption services provided to children and youth in the child welfare system. The NRCA also helps jurisdictions improve the effectiveness and quality of permanency support and preservation services. The center's website provides access to the news on adoption together with tools, curricula, reports, fact sheets, webcasts, and other resources. The center participates in the Children's Bureau Training and Technical Assistance Network (TTA).

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

National Sports Center for the Disabled (NSCD)

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, Colorado, Disabilities, Information services, Recreation, Training

National Therapeutic Recreation Society (NTRS)

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, Children with special health care needs, Community integration

New England SERVE

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

North American Council on Adoptable Children (NACAC)

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, Advocacy, Children with special health care needs, Information services

North Carolina State University, Center for Universal Design

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, Information services, Physical disabilities, Research programs, Training

PACER Center

Annotation: The PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through 21 years old. Located in Minneapolis, PACER provides information, support, workshops, and referrals to families and professionals in Minnesota and across the country. The organization sponsors conferences, produces a variety of publications (with some materials available in Spanish and Asian languages), and develops and develops specialized websites. PACER’s National Bullying Prevention Center provides resources designed to benefit all students, including those with disabilities.

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

Parent Educational Advocacy Training Center (PEATC)

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, Advocacy, Children with special health care needs, Education, Individualized education programs, PL 94-142, Referrals, Training

Parents Engaged in Education Reform (PEER)

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

Parents Helping Parents (PHP)

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. PHP provides assistive technology services through its iTech Center, hosts an online resource directory, and maintains the PHP Community Disability Library, which includes an online catalog.

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

Rehabilitation International (RI)

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

RESNA: Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

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

Search and Respond

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

Shriners Hospital for Children

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: Burns, Children with special health care needs, Hospitals, Orthopedics

St. John's Community Services (SJCS)

Through the Looking Glass (TLG)

Annotation: Through the Looking Glass (TLG) is a non-profit agency that provides 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. Services provided at the national level include training, publications, scholarships, a parent blog, and a legal program that promotes justice and human rights for parents with disabilities and their children in child care custody cases.

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

Transition Research Institute at Illinois (TRI)

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

U.S. Department of Education, Office of Special Education Programs (OSEP)

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

U.S. Department of Education, Rehabilitation Services Administration (RSA)

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

U.S. Social Security Administration (SSA)

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: Disabilities, Retirement, Social Security, Supplemental security income

VSA ( )

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: Art, CSHN programs, Education, Mental retardation

Washington State Fathers Network (WSFN)

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

World Institute on Disability (WID)

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.