Family Support

Family Leadership Training Initiative

Family leaders can assist a deaf-blind project by increasing the awareness of deaf-blindness, influencing the development of appropriate programs, services and legislation, and supporting other families. Connections has begun a collaboration with NCDB to provide an annual family leadership training program to train and support family members of children who are deaf-blind to become leaders in deaf-blindness within the local and state communities. All family participants complete on-line SPARKLE training and attend three face-to-face training sessions throughout the year. Training is provided by NCDB staff, with support and supplemental content from Connections staff, with web-based or telephone training between the face-to-face workshops.  Regular email and phone support is provided by Connections throughout the year. Family members in the program identify an individual project based on their interests and strengths, with the goal of meaningful change and increased leadership skills.  Examples of activities which have been completed by participants in other states include mentoring and supporting other families, improving access to community recreation services, increasing awareness of deaf-blindness by “telling their story” to the media, providing activities for sibling groups, and providing training to families and professionals.  “Homework” assignments between workshops help participants to organize and complete their individual project.  Families who participate are invited and encouraged to join the NCDB Community of Practice focused on family leadership.

There are 7 families who are participating in the 2008- 2009 Family Leadership Training program. Training dates are November 14-15, 2008; February 20-21; and May 8-9, 2009. If you are interested in completing Leadership Training duirng the next year, please contact Donna Riccobono.

Site-based Consultation

Site-based Consultation is available to families by request. A referral process is used to outline specific needs, to gather information about the services currently provided to the child, and to ensure that all parties are informed about the involvement of the project. Connections staff can provide supplementary support in the home, school or community setting, with the goal of building the capacity of the educational team and family members to meet the needs of the infant, child or young adult who is deaf-blind.

Project SPARKLE

Developed by the SKI-HI Institute at Utah State University, Project SPARKLE (Supporting Access to Resources, Knowledge, Linkages, and Education) is an individualized learning model for parents of children who are deaf-blind, combining DVD technology and the internet to make information, training, materials and resources, specific to deaf-blindness, conveniently available from home (Alsop, 2006).  The Project Director and Coordinator of Connections have become Project SPARKLE facilitators, and can provide SPARKLE resources, training and support to families in Maryland. Components of the SPARKLE model include: 1) DVD training program for parents with a guidebook and password-protected website; 2) database program to complete a Child Profile which organizes information to share with professionals and others; 3) “Family Room” component on the website and a Listserv to interact with other families; and, 4) web-based resource section, video library, and links to related websites.  Participants in the Family Leadership Training Project are provided with SPARKLE materials as part of the training. Additional guidebooks and materials will be available upon request for other parents who wish to complete the training and join the listserv.

All Things AT

Since 2004, Connections has partnered with Assistive Technology: Loans, Acquisitions, Services, and Training, Inc. (AT:LAST) to benefit children who are deaf-blind as part of the Annual Family Fair. Beginning July 1, 2008, AT:LAST will sponsor monthly “themed” events in the Assistive Technology Learning Center, providing a vehicle for supporting a variety of populations through hands on extensive displays, guest speakers, and vendor demonstrations.  In early 2009, the targeted audience for a month will be students who are deaf-blind, their families, and the systems that provide services to them.  Best practices for achieving educational and functional progress, as well as adapted or assistive devices that support learning, communicating, social skills, and adaptive behaviors will be showcased.  By collaborating with the central Maryland Technology Assistance Program (MDTAP), a program of the Maryland Department on Disabilities and Connections, AT:LAST will be able to combine the AT inventory of both programs for exhibits of “All Things A.T.” related to deaf-blindness. While deaf-blindness, like the other disabilities listed above, will be showcased for a single month each year, parents and professionals can make appointments throughout the year to examine the regular inventory of AT devices and supporting resources.

Transition Packets

Transition Packets have been developed to provide information and resources for families with children of 14 years of age or older. These packets were distributed in the Fall of 2005. Each September, packets are sent to any family whose child has reached his/her 14th birthday during the preceding year. For families not currently on our mailing list, a packet is sent to the school with a request to send it home with the student. Parents who wish to receive a packet directly can contact Donna Riccobono and provide a home mailing address.

New Family Welcome Packets

New Family Welcome Packets contain information and resources for parents of children who are deaf-blind. The packets are available for three age groups: Birth – 2 years, 3-13 years of age, and 14-21 years of age.