A Web site developed by a deaf-blind man that is full of information and links to “make people more aware about deafblindness”.
American Association of the Deafblind (AADB) is a national consumer advocacy organization for people who have combined hearing and vision impairments. It is open to all persons who are deafblind and individuals directly concerned with their well being, including spouses, children, friends and health professionals. AADB provides technical assistance to persons who are deafblind, families, educators, and service providers through direct onsite assistance to consumers at the adult level in the subject areas of community living, curriculum, social skills, and technology. Annual Dues: $20.00. TTY Phone: (301) 495-4402, Voice Phone: (301) 495-4403, Fax: (301) 495-4404
AFB’s mission is to enable people who are blind or visually impaired to achieve equality of access and opportunity that will ensure freedom of choice in their lives. AFB accomplishes this mission through agency-wide program initiatives and through the delivery of a wide variety of products and services.
Phone: (800) 232-5463
The ASCC UCEDD seeks to support, enhance, and improve the quality of life for persons with developmental disabilities. This is accomplished through cooperation, coordination, and collaboration among disability agencies to develop programs that promote self-determination, integration, full inclusion, and person-centered planning with family involvement and family advocacy. The ASCC UCEDD contributes to improving the lives of individuals with disabilities through a variety of initiatives and activities focused on education, research, and service. This includes trainings such as the “Use Your Voice” Parent Workshop which provide parents with information and knowledge to help parents understand and seek appropriate services for their children; “Accessing Services” which was a training geared towards introducing parents and families to the various agencies of the government that provides services for children with DD; and trainings on People-First Language and Signs of Abuse (Quality Assurance).
Assistive Technology Resource Centers of Hawai’i (ATRC) is a 501(c)3 nonprofit, resource center that provides access to assistive technology (AT) for people with disabilities of all ages, enabling independence and participation in every aspect of community life, including employment and education. As a resource center, ATRC’s mission is to link persons with technology and as such, ATRC will utilize demonstrations, outreach, technical assistance, public awareness, device loans and trials, financial loans and other programs to meet that mission.
Bookshare’s goal is to raise the floor of access so that people with print disabilities can obtain a broad spectrum of print materials at the same time as everyone else. People with visual impairments, physical disabilities and/or learning disabilities can look to Bookshare to dramatically increase the quantity and timely availability of books and newspapers in accessible formats. Bookshare’s vision encompasses new technological developments as well as new applications of widely available technologies to stretch the power of technology for increased access to content.
The Hawai‘i & Pacific Deaf-Blind Project provides technical assistance to children and youth who are deaf-blind, birth through 21 years of age, and to their families and service providers here in Hawai‘i and outlying Pacific Island nations/jurisdictions of American Samoa, Commonwealth of the Northern Mariana Islands, Federated States of Micronesia (Kosrae, Pohnpei, Chuuk, and Yap), Guam, Republic of Palau and Republic of the Marshall Islands.
The CHARGE Syndrome Foundation provides support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management. Contact: www.chargesyndrome.org, 516-684-4720, 800-442-7604 (toll free)
NCDB is home to DB-LINK, the largest collection of information related to deaf-blindness worldwide. A team of information specialists makes this extensive resource available in response to direct requests, via the NCDB web site, through conferences and a variety of electronic medium.
Deafblind International (DbI) is the world association that supports and promotes the development of services to enable a good quality of life for deaf-blind children and adults. DbI brings together professionals, researchers, families, deaf-blind people and administrators to raise awareness of deaf-blindness.
The Comprehensive Student Support System (CSSS) provides overarching support to the standards-based curriculum and programs. CSSS is based on the belief that given the appropriate support and interventions, every student will learn and succeed. It links students and families to the resources of the Department of Education, as well as those of their neighborhood, their community and other governmental and private agencies, emphasizing proactive, timely prevention and intervention services.
The Hawai’i School for the Deaf and Blind (HSDB) is a public education facility that provides statewide services to students that are deaf, blind, and deaf-blind. The HSDB’s array of services are designed to assist each student in the target populations to maximize his or her potential with high expectations of success including support services by uniquely qualified personnel, support for families, post-secondary transition services and adapted educational materials.
The Library for the Blind and Physically Handicapped (LBPH) provides services to U.S. citizens statewide and is part of two library systems: the Hawai’i State Public Library System and the National Library Service for the Blind & Physically Handicapped, Library of Congress. LBPH serves as the regional library and machine lending agency for the blind and physically disabled throughout the state and the outlying Pacific Islands.
The Special Education Section (SES) of the Department of Education focuses on the need of students with disabilities. Special education is specially designed instruction to meet the unique learning needs of students who require individualized education programs. Special education services (e.g. speech and language therapy, occupational therapy, etc.) may be delivered in a variety of settings based on the student’s needs.
Children with Special Health Needs Branch (CSHNB) works to ensure that all children and youth with special health care needs will reach optimal health, growth, and development, by improving access to a coordinated system of family-centered health care services and improving outcomes, through systems development, assessment, assurance, education, collaborative partnerships, and family support.
The Developmental Disabilities Division (DDD) assures there is a state system of supports and services for persons with developmental disabilities or mental retardation (DD/MR), which includes principles of self-determination and incorporates individualized funding, person-centered planning and community services.
The Early Intervention Section (EIS), otherwise known as the 0-3 Program, of the State Department of Health is a program that provides developmental services for any eligible child from birth to three years of age in five areas: physical, cognitive, communication, social or emotional and adaptive. Services are available on all islands and there is no cost to families.
The Hawai’i Keiki Information Services System (H-Kiss) is a free information and referral service of the Early Intervention Section. A care coordinator can help answer questions and get your child evaluated for developmental delays or other special needs, get needed services (like speech therapy and physical therapy), and link to other parents and services (such as child care, family support, respite, and community services).
Public Health Nursing Branch (PHNB) administers the public health nursing services statewide. The staff of PHNB is made up of Public Health Nurses, who are Registered Nurses, Licensed Practical Nurses, Para-medical Assistants, and Health Aids in the public schools. Public Health Nursing services are focused on public health issues which include care coordination services for infants and toddlers for EIS and facilitate access to services for special needs populations with medical/health and their caregivers.
The Special Supplemental Nutrition Program for Women, Infants and Children (WIC), is a federally funded program which provides Hawai’i residents with nourishing supplemental foods, nutrition education, breastfeeding promotion and health and social service referrals. The participants of WIC are either pregnant, breastfeeding, or postpartum women, and infants and children under age five who meet income guidelines and have a medical or nutritional risk.
Department of Human Services – Developmentally Disabled/Mentally Retarded Home and Community-Based Services Program (DD/MR HCBS)
The Developmentally Disabled/Mentally Retarded Home and Community-Based Services Program (DD/MR HCBS) is a Departments of Human Services and Health collaboration to administer and implement this program through Medicaid. The DD/MR HCBS Program provides individuals with developmental disabilities, mental retardation, and the medically fragile with support and services that will enable them to live as independently as possible in the least restrictive environment. Some services include: assistive devices, DDMR emergency services, Personal Assistance/Habilitation, respite care, and skilled nursing.
Medicaid is the United States health program for certain people and families with low incomes and resources. It is jointly funded by the state and federal governments, and is managed by the states. People served by Medicaid are U.S. citizens or legal permanent residents, including low-income adults, their children, and people with certain disabilities. The Hawai’i Med-QUEST Program (QUEST) is a Medicaid managed care program where the State pays health plans to provide coverage of medical and mental health services. Dental Services are provided on a fee-for-service income Hawai’i residents since January 1966. The program provides coverage for individuals who are age 65 and over, or under age 65 who are blind or disabled. All other individuals are covered by QUEST.
The Supplemental Nutrition Assistance Program (SNAP) is a federal program funded through the U.S. Department of Agriculture. As of October 1, 2008, SNAP is the new name for the federal Food Stamp Program. Each state administers a SNAP.
Ho’opono provides statewide comprehensive and specialized services to meet the varied needs of persons who are blind, deaf-blind, or visually impaired. There is no fee for services, and you do not have to be totally blind to use the services of Ho’opono. The goal of Ho’opono is to enable visually impaired adults to attain maximum vocational and functional independence with its team of skilled professionals providing varied services to meet the participant’s individual needs.
The Described and Captioned Media Program (DCMP) is a unique educational accessible media resource serving the United States and its territories. The DCMP provides a collection of free-loan accessible media, a database of accessible media available for purchase, guidelines for educational description and captioning, and training and feedback for beginning description and captioning agencies. In addition, the DCMP is a resource for educational description and captioning information, providing its own clearinghouse along with a gateway to additional resources provided by partners and collaborators.
The Disability and Communication Access Board (DCAB) serves as a public advocate of persons with disabilities by providing advice and recommendation on legislation, rules, policies, procedures, and plans relating to persons with disabilities and their civil rights or service needs. DCAB establishes and disseminates guidelines for the utilization of Sign Language Interpreters in state programs and activities, provides systems advocacy for issues related to persons who are Deaf, hard of hearing or deaf-blind, and administers the Hawai’i Quality Assurance System to credential Sign Language Interpreters.
The CNMI early hearing detection and intervention (EHDI) program is administered out of the division of public health, however it is part of a larger, federally funded initiative. The EHDI program promotes universal newborn hearing screening by 1 month of age, effective tracking and follow-up as a part of the public health system, promotes appropriate and timely diagnosis of hearing loss by 3 months of age, and enrollment in appropriate early intervention by 6 months of age. Phone: 670-236-8709/670-236-8714
Easter Seals Hawai‘i serves families of children with disabilities through education, advocacy, referral, direct service, counseling, and care coordination to ensure that their children have equal opportunities to live, learn work and play in their communities. Easter Seals Hawai‘i has been serving special needs children, youth and adults for over 60 years.
The Gallaudet University Regional Center and the Intensive Preparatory Program for Deaf and Hard of Hearing, provides services for KCC students and other members of the deaf community in Hawai’i and the Pacific Rim.
The Hawai‘i Association of the Blind (HAB) is an affiliate of the American Council of the Blind. They strive to advocate independence, equality and opportunities for the blind in Hawai‘i.
Hawai‘i Interpreting Services (HIS) is a comprehensive, one-stop service center providing quality sign language interpreters, real-time captioners, and computer-assisted notetakers to facilitate communication between deaf, hard of hearing, deaf-blind, and hearing individuals. These services are available 24 hours a day, 7 days a week on six islands in the state of Hawai‘i (Kauai, Oahu, Molokai, Lana’s, Maui, and the island of Hawai‘i).
Help, Understanding and Group Support (HUGS) serves families with children up to the age of 21 who have been diagnosed with any illness or disease that could rob a child of his or her life. The organization is the only one of its kind in the state that provides programs designed to improve the quality of life for families as they deal with the emotional and financial hardships of caring for a seriously ill child. HUGS’ services are designed to strengthen families in the face of overwhelming adversity.
Island Skill Gathering (ISG) facilitates the learning of independent living skills which empower people to create a life situation of their own choice. ISG seeks to inspire people with disabilities to discover assistive technology solutions while serving as a role model, a trusted mentor, and end-user of technology, and in the process providing support services and product sales. ISG’s technology specialists can help configure a computer system, and then assist with the acquisition, set up and training of its use.
Isle Interpret is a kama’aina interpreting agency dedicated to promoting successful communication with deaf and hard of hearing persons. Isle Interpret offers affordable, convenient, and secure interpreting and captioning services statewide.
The Kapiolani Community College Interpreter Training Program prepares American Sign Language interpreters that work with deaf and deaf-blind people in a variety of settings. Once trained, these interpreters work with clients in community and educational settings.
The Helen Keller National Center serves adults who are deaf-blind and provides support services for youth and adults who are deaf-blind, their families and the professionals who serve them across the country. Their mission is to enable each person who is deaf-blind to live and work in their community of choice. Contact: www.hknc.org, 516-944-8900 (main switchboard), 516-944-8637 (TTY), 516-570-3626 or 866-351-9089 (videophone)
The Learning Disabilities Association of Hawai’i (LDAH) is a non-profit organization founded by parents of children with disabilities. LDAH supports Hawai’i parents of children with any disability and the professionals who serve them through information/referral, education, training, mentoring and advocacy.
The National Center on Deaf-Blindness is home to a wealth of information. Use the Selected Topics section in the Library to find articles and NCDB products.
The National Dissemination Center for Children with Disabilities (NICHCY) serves the nation as a central source of information on disabilities in infants, toddlers, children, and youth. You’ll find easy-to-read information on IDEA, the law authorizing early intervention services and special education, and State Resource Sheets that will help you connect with the disability agencies and organizations in your state.
This national organization provides support to families through advocacy, information, resources, referral, supports, national policies, encourages founding and strengthening state family organizations, assists professionals in development of materials and training seminars and publishes “News from Advocates for Deaf-Blind.” Phone: (601) 388-7578
The National Organization for Rare Disorders (NORD) is a private not-for-profit organization dedicated to helping people with rare disorders and assisting organizations that serve them. NORD functions as a clearinghouse serving public and medical professionals, answering more than 100,000 questions each year. NORD puts families with the same disorders in touch with each others. Articles on over 4,000 rare diseases are available from NORD. Phone: (800) 999-6673
The NMC UCEDD Program is committed to the development of culturally complimentary outcomes while promoting equal opportunity, independence, productivity, promoting self-determination, and supporting an improved quality of life for people with developmental disabilities in their villages, the Commonwealth, and the world around us.
The National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind (NTAC) provides technical assistance to families and agencies serving children and young adults who are deaf-blind. NTAC will work with agencies and families within states through the provision of technical assistance to: a) facilitate long-range planning and development of collaborative partnerships among families, service providers, and agencies at the local, state, and regional levels; b) use effective practices and current research findings to enhance training opportunities for families and service providers to increase awareness, knowledge, and skills in meeting the unique needs of children and young adults who are deaf-blind; c) assist parents and family members in advocating for and participating in effective service delivery systems for the family member who is deaf-blind; d) assist young adults who are deaf-blind to promote self-advocacy and self-determination; and e) develop a nationwide database of demographic characteristics of infants through young adults who are deaf-blind. Phone: (503) 838-8140
Perkins School for the Blind is an innovative leader in serving people with visual impairments. Perkins is committed to providing education and services that build productive, meaningful lives for children and adults around the world who are blind, deaf-blind or visually impaired with or without other disabilities.
Sense was established in 1955 out of a family support group made up of parents whose children were born with rubella. It is a national charity that supports and campaigns for children and adults who are deafblind.
Signs of Self (SOS) is a nonprofit 501(c)3 contracted through the Hawai`i Department of Human Services, Vocational Rehabilitation and Services for the Blind Division (VR). Signs of Self serves the needs of people who are deaf, hard-of-hearing, and/or deaf-blind, staffed by trained professionals and community members. SOS believes that all individuals have the right to as much say as possible in the direction of their own lives – regardless of individual ability. Their goal is to help clients make the most of their lives.
Supplemental Security Income (SSI) is a Federal assistance program designed to provide income to aged, blind, or disabled people who have limited assets with which to support themselves. The SSI program is managed by the Social Security Administration (SSA), but financed by the general tax fund. Because the program is not financed by Social Security taxes, there are no work requirements necessary to qualify for SSI.
Special Olympics is founded on the belief that people with disabilities, who are at least eight years old, with proper instruction and encouragement, can learn, enjoy and benefit from training, participating and competing in individual and team sports, adapted as necessary to meet the needs of those with special mental and physical limitations. Special Olympics also permits individual programs to accept children from age six to seven for training, but these children may not compete.
The Special Parent Information Network (SPIN) is a parent to parent organization in Hawai’i that provides information, support and referral to parents of children and young adults with disabilities and the professionals who serve them. SPIN tries to keep families of a child with a disability linked to important information through its annual conference, quarterly newsletter, legislative updates, Special Education Advisory Council, fact sheets and parent guidebook.
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
The United Cerebral Palsy Association of Hawai‘i (UCPA) is part of a nationwide network of approximately 93 state and local affiliates that provide services, conduct public and professional education programs and support research in cerebral palsy. UCPA of Hawai‘i is also one of four independent non-profit organizations involved in an innovative collaboration called DiverseAbilities. The purpose of this partnership is to combine resources, reduce costs and expand services in pursuit of strengthening each organization’s mission. In addition to UCPA of Hawai‘i, DiverseAbilities includes Assistive Technology Resource Centers of Hawai‘i, Hawai‘i Centers for Independent Living and Abilities Unlimited.
Wonderbaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. It has a database of articles written by parents who want to share with others what they’ve learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families. Additional resources such as Dots for Tots, Seedlings and NBP for free/cheap Braille books can be found on the Wonderbaby.org website.