The Ophthalmology Department at the Children's Hospital Boston (CHB) and the Perkins School for the Blind (PSB) have a long history of working together to evaluate and treat young children with visual impairments. There has been a conscious effort to recognize the three sided parent-doctor-teacher communication, and to create an environment for open care. This includes a deliberate effort to use language that speaks to all three groups using a notebook called the Open Care Record (OCR). This small and very plain effort has made apparent the eagerness for easy and accurate communication, and a thirst for more information about the child's ophthalmic condition, more than presently provided by the traditional professional-parent communications. As the OCR developed, discussions with parents, educators and physicians in the other New England states underscored the desire for more accessible and better information about pediatric visual impairment and its management throughout the region.

New technology can facilitate the communication among these parents, teachers and doctors. Around fall of 2002, seed funding and support from the Hilton Perkins Foundation was gained for a basic start up of an expanded online version of the OCR. Thus, the ADVISOR was created to Assist the Development of Visually Impaired Students through Online Resources. In early 2003, the initial development of the ADVISOR website resulted in a National Institute of Health (NIH) application to the National Library of Medicine (NLM) for funding to fully develop the ADVISOR. By late 2003, the NLM award for a 3-year grant was approved to develop a collaborative resource with a goal to enhance communication among parents, teachers and doctors, and to gather a New England ADVISOR e-Collaborative. With the support of the NLM, caregivers are given an up-to-date and sustainable online tool to assist the blind and visually impaired in New England and beyond.

Traditionally, ophthalmologists communicate using a precise and technical vocabulary. The teachers of the visually impaired have a separate, specialized terminology. Parents, who are asked to follow the recommendations of the doctors and the teachers, have repeatedly expressed the need to know more about their child's vision care, and their frustration with the use of technical terms. Thus, a fundamental premise of the ADVISOR is that good communication is the common denominator for high quality vision care in visually impaired infants and toddlers. It is a shared effort to facilitate communication amongst those caring for the visually impaired. The ADVISOR is accessible on the Internet at anytime and anywhere. It provides a platform to acquire and disseminate information creating a cycle of knowledge between parents, teachers and doctors.

The Ophthalmology Department at the Children's Hospital, Boston is a referral center for the New England states and beyond. It offers a full array of state of the art diagnostic services for infants and children with visual impairments, and is involved in the management of complex visual disorders. In addition to 7 full time pediatric ophthalmologists, professional personnel include leaders in the assessment of visual functions in infants and young children, and an experienced pediatric optometrist who specializes in the care of low vision patients. The common diagnoses among these children are cortical visual impairment, optic nerve hypoplasia, retinopathy of prematurity, ocular malformations and albinism. Thus, access to a body of information about the most important points for the management of these conditions, and web-based discussion boards are welcomed. In addition to online interactions on the discussion boards, the project strongly encourages users to contact the ADVISOR freely via telephone, fax and email.

Media Communications (MC) and MRRC Multimedia at the Children's Hospital Boston has a 25-year history and provides dedicated new media communications resources to directly assist physicians and scientists at the Children's Hospital, Harvard Medical School and other affiliated institutions. They also have joined the PSB teachers and parents in the Infant Toddler program and the eye doctors at the Children's Hospital in the start up project to develop a basic informational website to serve these parents, teachers and doctors. Media Communications is creative and experienced in incorporating multimedia and interactive Internet features to enhance the delivery of web-based information, thereby providing a clear understanding to the caregivers of visually impaired infants and children. Multimedia features include tutorial videos to enhance the educational process, virtual tours of clinical areas, the virtual eye model and animations.

Currently, the Infant-Toddler Program at Perkins School for the Blind sees approximately 450 families of children with visual impairments per year. All socio-economic and ethnic groups are represented and approximately 65% of the children have multiple disabilities. The backbone of services is the home visit of the teacher of the visually impaired (TVI) to the child's home (TEACHER <-> PARENT), usually every other week. Visits also take place at the Early Intervention Program to coordinate services with other therapists as a multi-disciplinary effort is often needed to serve the special needs of babies with visual impairments. Parents report that some of the best visits occur at an ophthalmologistÕs office (DOCTOR <-> PARENT), when their teacher can be present to ask questions, and help to interpret and reinforce what the doctor has advised. Periodic professional focus groups are also conducted with ophthalmologists at the participating institutions (DOCTOR <-> TEACHER). Social worker-led groups of parents are scheduled four days a week, with nine families in each group. The parents participate in open discussions and listen to invited speakers. Events that emphasize a social and networking agenda are open to all of the families served statewide. In May 2004, the New England Regional Family Conference for families from the six New England States met at the Perkins School for the Blind. The Conference was attended by parents, siblings, grandparents, teachers and, of course, the babies. This was an all-day event with workshops and childcare for over 130 children. Teachers see each other at professional group meetings, such as The Association of Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) and The Association of Massachusetts Educators of the Visually Impaired (AMESVI). Additionally, many attend a weeklong summer course at the PSB's Outreach Program.

A New England wide e-Collaborative of organizations serving infants and children with visual impairments was developed. Eleven agencies from six New England states including Connecticut (BESB), Maine (Catholic Charities, Maine Bureau of Rehabilitation Services), Massachusetts (PSB, NAPVI, NEC Deafblind Project), New Hampshire (MICE, ATECH/ASSETT), Rhode Island (RIDE, ORSBVI) and Vermont (VABVI) were assembled to pool and share resources online for all. On one hand, the e-Collaborative will enhance the face-to-face parent-teacher-doctor exchanges. On the other hand, the e-Collaborative will draw input from parents-teachers-doctors to develop the content of the website. Furthermore, the New England organizations will establish contact with key state agency representatives serving the blind and visually impaired to develop project ideas, disseminate factual information and develop effective interactive online teaching tools. Altogether, the ADVISOR project will create universal access to eye care information by uniting geographically dispersed organizations in an effort to engage in common activities for the visually impaired.