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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 20 (48 total).

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

Association of University Centers on Disabilities (AUCD)

Annotation: The Association of University Centers on Disabilities (AUCD) supports and promotes a national network of university-based interdisciplinary programs. Network members comprise University Centers for Excellence in Developmental Disabilities, Leadership Education in Neurodevelopmental Disabilities programs, and Intellectual and Developmental Disability Research Centers. AUCD programs serve as a bridge between the university and the community, bringing the resources of both to achieve meaningful change. AUCD’s website addresses the range of interdisciplinary network activities, including services for children, adults, and families; academic training; research; training and technical assistance; policy advocacy; program evaluation; and dissemination of best practices and new information.

Keywords: Developmental disabilities, Children with special health care needs, Fundraising, Medical research, Mental retardation, SCAN, University affiliated centers, University affiliated programs

Autism Research Institute (ARI)

Annotation: ARI is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also provides referrals and disseminates research findings to parents and others worldwide seeking help. The ARI data bank contains nearly 30,000 detailed case histories of autistic children from over 60 countries. Some materials are available in languages other than English. ARI publishes the Autism Research Review International, a quarterly newsletter covering biomedical and educational advances in autism research. ARI also sponsors conferences and training seminars.

Keywords: Autism, Developmental disabilities, Information dissemination, Medical research

Autism Society

Annotation: The Autism Society (formerly the Autism Society of America) provides information and referral services, education, and increase awareness to parents and families of people with autism. The society sponsors an annual national conference on autism and promotes advocacy and education through various publications including the bimonthly newsletter Advocate. Some materials are available in Spanish, French, Chinese and Vietnamese.

Keywords: Autism, Developmental disabilities

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

Bethesda Communities

Annotation: Bethesda Lutheran Communities offers Christian education and residential rehabilitation services to people with mental retardation. It also offers short term and respite care, a fully accessible camp, day services, and case management. In addition to its main campus in Watertown, WI, Bethesda operates 37 community living facilities in ten states. Through its National Christian Resource Center, Bethesda offers free information and referral services nationwide, systems advocacy, resources for special religious education, staff training video modules, and workshops for religious and secular providers. Conferences and training seminars are sponsored as well. Publications include a catalog and newsletter. Some materials are available in Spanish.

Keywords: Case management Religious organizations, Developmental disabilities, Family support, Mental retardation, Respite care

CHARGE Syndrome Foundation

Annotation: The CHARGE Syndrome Foundation is a nonprofit, nonpartisan, nonsectarian service organization offering information, parent to parent link networking, and support for research. Since 1989 the newsletter, CHARGE Accounts, has provided parents with a way to exchange information, experiences, and mutual support. Other publications include CHARGE Syndrome: A Management Manual for Parents (2 vols.), available in both English and Spanish. The Foundation also sponsors international conferences for families and professionals.

Keywords: Heart malformations, Atresia of the choanae, Developmental disabilities, Ear malformations, Genital hypoplasia, Information services

Cornelia de Lange Syndrome Foundation (CdLS)

Annotation: The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which works to ensure early and accurate diagnosis of CdLS; promote research into the causes and manifestations of the syndrome; and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. Services to consumers include referrals, publications, and reference information. Publications include Facing the Challenge: A Parents' Guide to CdLS, Facts About Cornelia de Lange Syndrome, CdLS Foundation Album, and a bimonthly newsletter, Reaching Out. Some materials are available in Spanish. The foundation sponsors a conference every other year.

Keywords: De Langes syndrome, Developmental disabilities, Parent groups

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

DC Health Resources Partnership (DCHRP)

Annotation: The DC Health Resources Partnership (DCHRP) seeks to expand the community health care capacity for individuals with intellectual and other developmental disabilities in Washington, DC. Funded by the D.C. Mental Retardatrion and Developmental Disabilities Administration, the partnership is a collaboration between a number of community partners, including Georgetown University's Department of Family Medicine, DC Area Health Education Center, Inc., George Washington University Medical Center, D.C. Primary Care Association, Project Action, DC State Policy Council on Family Supports, the Arc of DC, the Quality Trust for Individuals with Disabilities, and the DC Coalition of Service Providers. The partnership, which is administered through GU's Center for Child and Human Development, convenes expert panels (these groups meet four times annually), provides an online database of Washington-area providers, and posts information and publications for consumers and professionals on its Web site.

Keywords: Developmental disabilities, Regional programs, Collaboration, Community programs, Health care systems, Local government, Online databases, Special health care services

Early Intervention Program /The Arc -- Baton Rouge (EIP)

Annotation: The Early Intervention Program (EIP) provides educational and other services to Louisiana children 0–3 years old with developmental disabilities, including direct services, information, support, and statewide referrals. The program also provides in-service training and technical assistance on developmental disabilities and early education, publishes a newsletter, and maintains a library of information on Down syndrome, early intervention, and developmental disabilities. EIP also provides an Inclusive Day School; a learning center for typical and special needs children (ages 6 weeks to 6 years).

Keywords: Down syndrome, Developmental disabilities, Early intervention, Educational programs, Information services, Louisiana, Technical assistance

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

First Signs

Annotation: First Signs is a national non-profit organization dedicated to educating parents and pediatric professionals about the early warning signs of autism and other developmental disorders. The organization works to improve screening and referral practices and to lower the age at which young children are identified with autism and other developmental disorders. First Signs also serves as a model for states in disseminating key information about early warning signs, the need for routine screening, and the treatment options available to parents of children diagnosed. The program provides practitioners with tools and training, and parents with education and support, to help young children stay on a healthy developmental path. The Web site includes research summaries, state progress reports, articles, columns, and book reviews, as well as links to additional resources.

Keywords: Autism, Developmental disabilities

Florida Disabilities Development Council (FDDC)

Annotation: The purpose of the Florida Developmental Disabilities Council (FDDC) is to engage in advocacy, capacity building, and systemic change activities that contribute to a coordinated, consumer and family centered, consumer and family directed, comprehensive system of community services and individualized supports that enable individuals with developmental disabilities to exercise self-determination, be independent, be productive, and be integrated and included in all facets of community life.

Keywords: Advocacy, Children, Developmental disabilities, Families, Family centered services, Family support services, Florida, Infants, Special health care needs, State initiatives

Georgetown University Center for Child and Human Development (GUCCHD)

Annotation: The Georgetown University Center for Child and Human Development (formerly Georgetown University Child Development Center) was established over four decades ago to improve the quality of life for all children and youth, especially those with, or at risk for, special needs and their families. A division of Georgetown University's Department of Pediatrics, the Georgetown University Center for Child and Human Development is founded on an interdisciplinary approach to service, training programs, research, community outreach, and public policy. The center sponsors conferences, training seminars and workshops. Services to consumers include referrals, publications, a catalog, and access to a list service. The policy component of the Center works internationally and nationally, as well as with states and communities, to develop and implement policies and service systems that serve the child.

Keywords: Communication disorders, Congenital abnormalities, Developmental disabilities, Early childhood education, Listservs, Nervous system diseases, Neuropsychology

Illinois Early Childhood Intervention Clearinghouse

Annotation: The Illinois Early Childhood Intervention Clearinghouse provides resource materials on issues related to young children with special needs and their families. The clearinghouse provides referrals and reference information, operates a statewide lending library, maintains a bibliographic database of more than 33,000 citations, and publishes a catalog and a quarterly newsletter, Early Intervention. Some materials are available in Spanish.

Keywords: Early intervention, Children, Developmental disabilities, Illinois, Self help clearinghouses

Interdisciplinary Technical Assistance Center on Autism and Development Disabilities (ITAC)

Annotation: The Interdisciplinary Technical Assistance Center (ITAC) on Autism and Developmental Disabilities, part of the Combating Autism Act Initiative, works to improve the health of infants, children, and adolescents who have, or are at risk for developing, Autism Spectrum Disorders (ASDs) and other developmental disabilities. The Center provides technical assistance to interdisciplinary programs that will better train professionals to use valid and reliable screening and diagnostic tools and provide evidence-based interventions for children with ASD and other developmental disabilities. The Web site provides links to related resources and materials plus a state-by-state directory of related programs.

Keywords: Autism, Developmental disabilities, Information dissemination, National MCH resource center, Resource centers, Technical assistance, Training

International Association for Life Quality

Annotation: The International Association for Life Quality (IALQ) was established online in 2009 as an initiative of the Training, Education, and Research Institute (TERI Inc.) to help educate, advocate and propagate programs and services focusing on quality of life issues without being hindered by geographical boundaries. Goals are to offer the world’s first specialization, coursework and accreditation programs focusing on special needs life coaching and more. This online community is a place for scholars, researchers, professionals, families and others interested in improving and assuring life quality for persons with developmental disabilities to become colleagues together in this mission.

Keywords: Children with special health care needs, Developmental disabilities, Family support services, Individualized family service plans, Life skills, Parent education, Special health care services

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

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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.